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Book Reviews

In 2 essay collections, writers with disabilities tell their own stories.

Ilana Masad

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More than 1 in 5 people living in the U.S. has a disability, making it the largest minority group in the country.

Despite the civil rights law that makes it illegal to discriminate against a person based on disability status — Americans with Disabilities Act passed in 1990 — only 40 percent of disabled adults in what the Brookings Institute calls "prime working age," that is 25-54, are employed. That percentage is almost doubled for non-disabled adults of the same age. But even beyond the workforce — which tends to be the prime category according to which we define useful citizenship in the U.S. — the fact is that people with disabilities (or who are disabled — the language is, for some, interchangeable, while others have strong rhetorical and political preferences), experience a whole host of societal stigmas that range from pity to disbelief to mockery to infantilization to fetishization to forced sterilization and more.

But disabled people have always existed, and in two recent essay anthologies, writers with disabilities prove that it is the reactions, attitudes, and systems of our society which are harmful, far more than anything their own bodies throw at them.

About Us: Essays from the Disability Series of the New York Times, edited by Peter Catapano and Rosemarie Garland-Thomson, collects around 60 essays from the column, which began in 2016, and divides them into eight self-explanatory sections: Justice, Belonging, Working, Navigating, Coping, Love, Family, and Joy. The title, which comes from the 1990s disability rights activist slogan "Nothing about us without us," explains the book's purpose: to give those with disabilities the platform and space to write about their own experiences rather than be written about.

While uniformly brief, the essays vary widely in terms of tone and topic. Some pieces examine particular historical horrors in which disability was equated with inhumanity, like the "The Nazis' First Victims Were the Disabled" by Kenny Fries (the title says it all) or "Where All Bodies Are Exquisite" by Riva Lehrer, in which Lehrer, who was born with spina bifida in 1958, "just as surgeons found a way to close the spina bifida lesion," visits the Mutter Museum in Philadelphia. There, she writes:

"I am confronted with a large case full of specimen jars. Each jar contains a late-term fetus, and all of the fetuses have the same disability: Their spinal column failed to fuse all the way around their spinal cord, leaving holes (called lesions) in their spine. [...] I stand in front of these tiny humans and try not to pass out. I have never seen what I looked like on the day I was born."

Later, she adds, "I could easily have ended up as a teaching specimen in a jar. But luck gave me a surgeon."

Other essays express the joys to be found in experiences unfamiliar to non-disabled people, such as the pair of essays by Molly McCully Brown and Susannah Nevison in which the two writers and friends describe the comfort and intimacy between them because of shared — if different — experiences; Brown writes at the end of her piece:

"We're talking about our bodies, and then not about our bodies, about her dog, and my classes, and the zip line we'd like to string between us [... a]nd then we're talking about our bodies again, that sense of being both separate and not separate from the skin we're in. And it hits me all at once that none of this is in translation, none of this is explaining. "

From the cover of Resistance and Hope: Essays by Disabled People, edited by Alice Wong Disability Visibility Project hide caption

From the cover of Resistance and Hope: Essays by Disabled People, edited by Alice Wong

While there's something of value in each of these essays, partially because they don't toe to a single party line but rather explore the nuances of various disabilities, there's an unfortunate dearth of writers with intellectual disabilities in this collection. I also noticed that certain sections focused more on people who've acquired a disability during their lifetime and thus went through a process of mourning, coming to terms with, or overcoming their new conditions. While it's true — and emphasized more than once — that many of us, as we age, will become disabled, the process of normalization must begin far earlier if we're to become a society that doesn't discriminate against or segregate people with disabilities.

One of the contributors to About Us, disability activist and writer Alice Wong, edited and published another anthology just last year, Resistance and Hope: Essays by Disabled People , through the Disability Visibility Project which publishes and supports disability media and is partnered with StoryCorps. The e-book, which is available in various accessible formats, features 17 physically and/or intellectually disabled writers considering the ways in which resistance and hope intersect. And they do — and must, many of these writers argue — intersect, for without a hope for a better future, there would be no point to such resistance. Attorney and disability justice activist Shain M. Neumeir writes:

"Those us who've chosen a life of advocacy and activism aren't hiding from the world in a bubble as the alt-right and many others accuse us of doing. Anything but. Instead, we've chosen to go back into the fires that forged us, again and again, to pull the rest of us out, and to eventually put the fires out altogether."

You don't go back into a burning building unless you hope to find someone inside that is still alive.

The anthology covers a range of topics: There are clear and necessary explainers — like disability justice advocate and organizer Lydia X. Z. Brown's "Rebel — Don't Be Palatable: Resisting Co-optation and Fighting for the World We Want" — about what disability justice means, how we work towards it, and where such movements must resist both the pressures of systemic attacks (such as the threatened cuts to coverage expanded by the Affordable Care Act) and internal gatekeeping and horizontal oppression (such as a community member being silenced due to an unpopular or uninformed opinion). There are essays that involve the work of teaching towards a better future, such as community lawyer Talila A. Lewis's "the birth of resistance: courageous dreams, powerful nobodies & revolutionary madness" which opens with a creative classroom writing prompt: "The year is 2050. There are no prisons. What does justice look like?" And there are, too, personal meditations on what resistance looks like for people who don't always have the mobility or ability to march in the streets or confront their lawmakers in person, as Ojibwe writer Mari Kurisato explains:

"My resistance comes from who I am as a Native and as an LGBTQIA woman. Instinctively, the first step is reaching out and making connections across social media and MMO [massively multiplayer online] games, the only places where my social anxiety lets me interact with people on any meaningful level."

The authors of these essays mostly have a clear activist bent, and are working, lauded, active people; they are gracious, vivid parts of society. Editor Alice Wong demonstrates her own commitments in the diversity of these writers' lived experiences: they are people of color and Native folk, they encompass the LGBTQIA+ spectrum, they come from different class backgrounds, and their disabilities range widely. They are also incredibly hopeful: Their commitment to disability justice comes despite many being multiply marginalized. Artist and poet Noemi Martinez, who is queer, chronically ill, and a first generation American, writes that "Not all communities are behind me and my varied identities, but I defend, fight, and work for the rights of the members of all my communities." It cannot be easy to fight for those who oppress parts of you, and yet this is part of Martinez's commitment.

While people with disabilities have long been subjected to serve as "inspirations" for the non-disabled, this anthology's purpose is not to succumb to this gaze, even though its authors' drive, creativity, and true commitment to justice and reform is apparent. Instead, these essays are meant to spur disabled and non-disabled people alike into action, to remind us that even if we can't see the end result, it is the fight for equality and better conditions for us all that is worth it. As activist and MFA student Aleksei Valentin writes:

"Inspiration doesn't come first. Even hope doesn't come first. Action comes first. As we act, as we speak, as we resist, we find our inspiration, our hope, that which helps us inspire others and keep moving forward, no matter the setbacks and no matter the defeats."

Ilana Masad is an Israeli American fiction writer, critic and founder/host of the podcast The Other Stories . Her debut novel, All My Mother's Lovers, is forthcoming from Dutton in 2020.

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The Dignity of Disabled Lives

The burden of being perceived as different persists. The solution to this problem is community.

By Andrew Solomon

Mr. Solomon is a professor of clinical psychology at Columbia University and the author of “ Far From the Tree ,” which has been made into a documentary film .

This essay is adapted from the author’s foreword to the new book “ About Us: Essays From The New York Times Disability Series .”

The eugenic movement spearheaded by Francis Galton in England in the late Victorian period reached a culmination in the view that if you got rid of the misfits, you could breed a pure, advantaged race. The reach of the movement was reflected in the American campaigns to sterilize disabled people, supported in a 1927 Supreme Court decision in which Oliver Wendell Holmes wrote, “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. Three generations of imbeciles are enough.”

Drawing on these sources, Hitler began his campaigns of genocide by gassing the disabled, presuming not only that they were polluting the larger population, but also that they were a group no one would miss. Genetic determinism presumed that the weak and disadvantaged passed along their weakness and disadvantage, and that a systematic campaign of eliminating all but the best and strongest could improve the lot of humanity.

There are two entwined arguments here, one about who makes disabled children, and the other about the worth of the lives of those disabled children. What sort of parents have children with disabilities? Every sort of parent. Nondisabled parents produce disabled children with startling regularity — and disabled people produce nondisabled children time and again. So that part of the argument is specious, at least when applied so specifically as Galton, Holmes and Hitler contemplated. More relevant to us today is the modern argument that whether disability is passed along generationally or not, it has inherent worth, and the loss of it from our society would be a troubling depletion of human diversity. That is a more radical, philosophical challenge.

Disabled lives are lives, and are charged with inherent dignity. Most people with disabilities don’t wish they had never been born; most people with disabilities contribute to the world they inhabit; most people with disabilities both give more to and get more from life than their nondisabled peers may be inclined to guess. Some have rich lives despite their disability, but others would say they have rich lives at least in part because of their disability.

In 1968, the ethicist Joseph Fletcher wrote in The Atlantic Monthly, that esteemed journal of liberal thought, that there was “no reason to feel guilty about putting a Down’s syndrome baby away, whether it’s ‘put away’ in the sense of hidden in a sanatorium or in a more responsible lethal sense. It is sad, yes. Dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down’s is not a person.”

A lot of ink has been spilled covering our society’s gradual embrace of women’s rights, then racial rights, and most recently, gay rights. The shift in attitudes toward disability has been nearly as powerful, if less complete, but it has been much quieter. Today, no one would publish an article in the mainstream media that championed dehumanizing a group of disabled people as Joseph Fletcher did. What was once par for the course has become unthinkable.

Though utilitarian philosophers such as Peter Singer have proposed that parents should have the right to murder their disabled newborns, these views are deliberately polemical, widely protested and abhorrent to most people who encounter them. We have learned to value most people, and with that social advancement has come progress in improving their lives. Acceptance is protection. People with Down syndrome live nearly twice as long as they did in 1968, and many hold down jobs; some are writers or actors or models; some live at least semi-independently. That progress reflects an opening up of a society that no longer experiences the birth of a disabled child as an unmitigated tragedy, that no longer assigns chronic sorrow to the parents.

This more accepting and celebratory point of view has some ascendancy in the United States, but is a work in progress both here and globally; what constitutes an identity in one society or family may be a disability in another. The sociologist Ashton Applewhite quoted a matador who said, “The bull looks different when you’re inside the ring.” Disability is very different for disabled people than it looks to nondisabled people. What we wouldn’t have opted into is not the same as what we’d now like to change.

It’s hard to remember how strong the arguments were that women were lesser than men, that black people were lesser than white people, that gayness was a crime, a sin, and a disease in search of a cure. It can be hard to realize how many people still make these arguments, how many hated living under the authority of an African-American president and how many abhor the idea of a female president, how many would deny basic services to gay and trans people, how many regard the disabled with polite disdain.

Our society is rife with glass ceilings, and the disability ceiling has the fewest cracks in it. When I attended the 2018 annual convention of The Arc, the country’s largest and oldest organization for people with intellectual and developmental disabilities, I was struck by how seldom we see in common life what I saw there: the meeting of disabled and nondisabled people as equals.

Increasingly, decisions about what kind of child to have are made prenatally, either through preimplantation genetic diagnosis or through amniocentesis. An image of disability is set at the birth of a newborn child. But predictions about any individual life are always hypothetical and often wrong. In interviewing hundreds of parents of children with disabilities, I found a recurring theme of indignation from parents whose children had achieved much more — or much less — than doctors had anticipated. A baby, disabled or not, is a cipher, and only time will show how and what he or she will do.

Doctors who deliver prognostications are usually representing averages. On average, certain conditions bestow certain degrees of disability, but brains and bodies are highly adaptive, and the skills of an individual child can surprise everyone. It is a tough call for doctors. Creating an atmosphere of false hope can be catastrophic; it sets families up for renewed despair with every milestone their child misses. But presuming the worst often results in the worst results; low expectations can be a self-fulfilling prophecy. A tempered realism about the vagaries and uncertainties often obtains the best result, but parents crave assurances and doctors too often indulge that inclination.

The mother of a man with diastrophic dwarfism, a very disabling condition, described to me how for the first year of her son’s life, every doctor she saw rattled off a catalog of what was likely to go wrong and asked her if she was prepared to deal with it all. When her son was a year old, a doctor who specialized in skeletal dysplasias lifted the baby up, held him aloft in the light, and said, “Let me tell you. That’s going to be a handsome young man one day.” The rewarding life she was to have with her son began that very day, a fact she reflected on when we chatted at his joyous wedding years later.

The expectations with which a child is raised may have a strongly determining effect on what that child can do. Parents must hope for the best, but also believe that life will have meaning even with a child who achieves limited functioning. The process of forging meaning does wonders for both parents and child. A recent study looked at children with various complications at birth and found, simply, “The children of mothers who had tried harder to find meaning had a better developmental outcome.” How we frame disability determines how we live it, and if it is defined as calamitous from the start, the job of finding meaning is steeper than it need be. The fact that you wouldn’t have chosen something doesn’t mean that you can’t find joyful meaning in it.

Every condition manifests in a mix of inherent challenges, access challenges, and social challenges. Many people with achondroplasia (the most common form of dwarfism) have spinal compression and need surgery for it. We can fix social attitudes toward people with dwarfism all we want, and spinal decompression procedures will neither be obviated nor become pleasant. They are an inherent challenge of the condition. Challenges of access are amply addressed by the Americans With Disabilities Act and we recognize the need for accommodations to address them, but though things are much better than they were on this front, problems persist. So, someone with achondroplasia may be unable to reach the cereal at the local supermarket. The solution to this problem is not to make the LP (little person) taller, but to build grocery stores with lower shelving — or at least to give customers some tools or assistance that allow them to retrieve what they want to put in their cart. Because achondroplasia is a relatively infrequent disability, there are no standards for addressing high grocery shelves. That is a challenge of access.

The social challenges are the most pernicious. It is tough for dwarfs that people stare at them and try to make iPhone videos of them when they are quietly leading their regular lives. People try to joke with them; they say derogatory things in plain earshot. They plan parties at which dwarfs are the extraordinary entertainment. There is no escape from the intrusive exoticizing. These social problems of intractable rudeness are obdurate. An intellectually disabled person may not be able to parse difficult texts at the library; a physically disabled person may not be able to get up the front steps to that same library; someone with a speech impediment may be dealt with patronizingly there. We can’t make good policy unless we acknowledge that all three challenges — inherent, access, and social — are almost always in play.

Negative views of disability are deeply rooted in tradition. The evil of Shakespeare’s Richard III was inseparable from his hunchback. The disabled body was morally suspect. In “Henry VI, Part 3,” Gloucester (who would become Richard III) says bitterly, “Since the heavens have shaped my body so, / Let hell make crooked my mind to answer it.” Disability was an invitation to degenerate behavior. He goes on, “And this word ‘love,’ which graybeards call divine, / Be resident in men like one another / And not in me: I am myself alone.”

To be found grotesque is often to become grotesque; we fit other people’s perceptions of us and grow into what they see. Forced into isolation by a deformity, the disabled man is infected with rancor that has no other occasion. Though we’ve disavowed Shakespeare’s association between deformity and evil, the burden of being perceived as different persists, and it can generate isolation and rage. The best solution to this problem is community .

That there are now widely read platforms such as this one, in which people with disabilities tell our own stories, points to the new ways communities are being built and acknowledged; and those who read them may find redemptive community in these words. This is not to say that if Richard III had belonged to a chat group of other hunchbacks he would have been a cheerful fellow, but only to comment that unmitigated outsiderness has always been poisonous and remains so.

Disabled lives are as valid as nondisabled lives, but they are not the same. This quest to assert equality without making false claims of equivalence echoes the quest of the women’s movement, the civil rights movement, and the gay rights movement.

Isolationism is a national policy of separating your country from dependence on others, and I believe it has been overplayed of late. It has its human equivalent in the elevation of personal independence: independence of children from parents, of parents from extended family, of extended family from the society around them. We admire the ability of people to stand on their own two feet and to function without reliance on social supports. Pundits disparage those who depend on public funding. But where has this modern, Western value originated?

Independence is not so brave a value as we often insist, and it is also almost impossible; we live in a collective fabric, all our lives entwined with the lives of others. Human beings are social animals. Disabled people are often dependent on other people, and in our lionization of self-sufficiency, we see that as a weakness. But dependency has its own particular poetry. It is a fundamental aspect of intimacy, a defining quality of love.

When I first came across inclusion and mainstreaming as educational strategies, I thought they must be lovely for the disabled people whose position was advanced. But I thought it might be tough on the nondisabled people, whose progress would inevitably be slowed down by the accommodations that their disabled classmates required. Now, having been in many such classrooms, I can say that the primary advantage redounds to the nondisabled children, who grow up less afraid of difference than they would otherwise be, more receptive to the intense humanity of their fellow students. They do not think that independence is success and dependence is failure. This can allow them more willing to acknowledge their own dependence, to tolerate their own vulnerability.

Until Jason Kingsley, who has Down syndrome, began appearing on “Sesame Street” in the 1970s, there had been almost no disabled children publicly visible since the Victorian era, when the disabled were often sentimentalized and gathered at the family hearth. In the 20th century, people whose children were disabled tended to hide them, seldom taking them into the market squares or shopping malls or restaurants or theaters where human beings come into contact with strangers. They were squirreled away at home or ferried to institutions, an exhausting embarrassment.

Now, disabled people are more visible than ever. We live in a time of great social progress, when that visibility has been achieved — but we also live in a time of great medical progress, and at the same time that many forms of disability are being acknowledged as identities, they are becoming subject to cure. I believe in social progress and I believe in medical progress, but it would be tremendous for them to be more awake to each other. Disability may coexist with shocking ability; indeed, the shocking ability may rise in part from the depth of consciousness required of people who are disabled and who have to figure out an often bewildering world through their particular consciousness. To imagine, and I use the most obvious example, Stephen Hawking without disability is to imagine someone else entirely.

I come to this movement for rights through my struggle with depression, a mental illness that can earn you disability stripes. Depression’s up side is substantial; I’ve learned a lot from my depression. If I had my life to do over, however, I’d wish it away. I pray that it never afflicts my children. I also belong, as we all do, to myriad other minorities. If I imagine myself without dyslexia, without A.D.D., without depression, without gayness, without nearsightedness, without orthostatic hypotension, without Jewishness, without white privilege, without prosopagnosia, then there’s very little of me left. We are mostly an accumulation of strengths and weaknesses, of pathologized and nonpathologized conditions and identities.

My grandmother used to say, “Everybody’s got something.” Our work is to seek for meaning in who we are rather than in who we might have wished to be. It may be easier in the United States as it’s currently constructed to be white than it is to be of color, but most people of color do not spend their time wishing they had pale skin and golden hair. Women may know that men have more privilege, but women don’t in general experience that difference as one they would address by switching gender. We are our authentic selves, striving for justice, and the rest is commentary.

Andrew Solomon ( @Andrew_Solomon ) is a professor of medical clinical psychology at Columbia University Medical Center, and the author of “ Far From the Tree ,” which has been made into a documentary film , and of “ The Noonday Demon ” and “ Far and Away .”

This essay is adapted from the author’s foreword to the new book “ About Us: Essays From The New York Times Disability Series ,” edited by Peter Catapano and Rosemarie Garland-Thomson.

The Times is committed to publishing a diversity of letters to the editor. We’d like to hear what you think about this or any of our articles. Here are some tips . And here’s our email: [email protected] .

Follow The New York Times Opinion section on Facebook , Twitter (@NYTopinion) and Instagram .

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Disability: Health, Well-Being, and Personal Relationships

In the past 50 years, there has been burgeoning philosophical interest in well-being, health, and personal relationships. There has also been increasing philosophical writing on disability, particularly in relation to justice and equality. Until recently, however, there has been little philosophical discussion of disability's relevance to well-being, health, or personal relationships—in contrast to the growing scholarship on these topics in the social sciences. Until the past decade, most philosophical discussions of well-being simply treated disabilities as conditions that reduced it. Philosophical accounts of health and disease have mentioned disability, but mainly to treat it as a form of disease or ill-health; they have had little to say about the complex, contested relationship between disease and disability. And with the notable exception of parental attitudes toward one’s actual or possible disabled children, the role of disability in personal relationships has provoked scant philosophical interest.

This Entry will proceed as follows. Part 1 will discuss disability and well-being. It will begin by reviewing debates on the application of three standard accounts of well-being to disability. It will note the divergence between first- and third-person assessments of the impact of disability on well-being under all these accounts and suggest some reasons for this divergence. We will then examine what we regard as the most difficult challenge to the claim that many or most disabilities do not necessarily reduce well-being: the widely-held view that it is desirable to prevent, correct, or mitigate disabilities, and generally undesirable to acquire one. The concluding section of Part 1 will examine how assumptions about disability and well-being inform a number of contemporary debates in medicine and health care.

Part 2 will examine philosophical writing on health and disease. It will review different definitions of health and their implications for the question of whether it is necessarily unhealthy to be disabled. It will consider the few attempts that have been made to distinguish disability from disease. It will also note a tension for disability scholars in making the distinction between disease and disability: although that distinction provides a basis for separating the medical from the socially constructed aspects of disability, it can also oversimplify the experience of people with disabilities.

Part 3 will discuss disability and personal relationships. It will examine widely shared assumptions concerning the impact of disabilities on a variety of relationships, in particular the doubts expressed by many laypeople about the capacity of adults with disabilities to become friends, lovers, and parents. This Part will also consider how historical and contemporary accounts of friendship and love apply to persons with disabilities.

After exploring the relevance of disability to well-being, health, and personal relationships, this Entry will conclude by examining common features of the philosophical treatment of disability in the three domains. Philosophical scrutiny is particularly needed in these areas, because of the strength and persistence of popular assumptions about the adverse impact of disability on all three.

The impact that disability has on each domain is largely a function of the view or model of disability one accepts. Disability scholars and philosophers of disability now refer to two models of disability, the medical and the social (see SEP entry on disability: definitions, models, experience ). For present purposes, we understand the social model of disability as holding that the physical and social environment are the primary source of the limitations and disadvantages faced by people with almost all impairments. This model has obvious relevance for the accounts of well-being, health, and personal relationships we will examine. It suggests that if people with disabilities appear to be unhappy, unhealthy, or socially isolated, it is primarily due to contingent features of their physical and social environments, not to any intrinsic features of their impaired functions. In some cases, this recognition will require a reassessment of their present well-being, health, or social relationships. In other cases, it will not challenge that assessment, but will alter the prescription for improving their well-being, health, or relationships, or the expectation of success in doing so.

1.1 Disability and Subjective Theories of Well-Being

1.2 disabilities and objective lists, 1.3 cognitive disability and well-being, 1.4 the claimed neutrality of disability, 1.5.1 reproductive testing, 1.5.2 withdrawal of life support from disabled newborns, 1.5.3 “end-of-life” decision making, 1.5.4 health related quality-of-life measures, 2.1 the first approach: distinguishing disability from disease, 2.2 the second approach: health as more or other than the absence of disease, 3.1 the nature of personal relationships, 3.2 peer relationships: friendship and love, 3.3 romantic love and sexual intimacy, 3.4 parenting and disability, 3.5 personal relationships and third-party assistance, 4. conclusion, other internet resources, related entries, 1. disability and well-being.

The relationship between disability and well-being is important both theoretically and practically. How philosophers, social scientists, policy makers, and lay people understand that relationship matters for the theories of welfare and flourishing we construct, the judgments about our lives we make on a regular basis, and the social and health policies we adopt.

Assumptions about well-being, tacit as well as explicit, pervade our thinking about disability. Decisions about abortion after a “positive” prenatal test result are often based on the parents’ judgment about the child’s expected quality of life. Decisions about life-sustaining treatment for severely disabled infants and critically ill adults are often made on the same basis, although what counts now as an acceptable quality of life may differ from what is considered acceptable when contemplating the futures of fetuses and newborns. Judgments of well-being also figure in allocation decisions, where scarce resources may be diverted away from persons who, because of certain disabilities, are deemed to have poor prospects for an acceptable quality of life, and toward persons with “better” prospects. The examples could be multiplied, and they are not confined to health-related matters.

Disability is often initially encountered as an atypical mental or physical condition whose impact on well-being is mediated by the physical and social environments. For example, an individual is deciding whether to undertake expensive and risky surgery to restore functioning lost in an accident; a couple is deciding whether to continue a pregnancy with a fetus diagnosed with a genetically-based health condition; a legislature is deciding how much money to allocate to competing injury-prevention programs. All these decision makers first confront disability as a biological phenomenon—a sudden or gradual loss of functioning; a genetic condition with various health effects; a range of vehicular, recreational, household, and workplace injuries. Their concern is with the effect of disability, encountered this way, on lives they care about or are charged with protecting: their own, their future children’s, or their constituents’.

As these examples suggest, the fact that disability-related disadvantages often reflect contingent features of the social environment may have different relevance for different decisions and decision makers. Parents deliberating about whether to have a child with a severe disability may need to treat as “given” the adverse effects on well-being of social stigma or inadequate educational resources. It is far less clear that legislators would be justified in treating as “given” the reduction in well-being associated with these social conditions, given that they are in a position to modify those conditions, by, for example, prioritizing funding for inclusive education.

We begin by examining the impact that disabilities have, or are expected to have, on various accounts of well-being. Philosophical discussions of what makes life go well generally recognize three distinct types of accounts. T.M. Scanlon distinguishes

“experiential theories…which hold that the quality of a life for the person who lives it is determined completely by…its experiential quality;” “desire theories…which hold that the quality of a person’s life is a matter of the extent to which that person’s desires are satisfied;”

“substantive-good theories…which hold that there are standards for assessing the quality of a life that are not entirely dependent on the desires of the person whose life it is”. (Scanlon 1998: 109ff) [ 1 ]

The first two accounts are “subjective”, in that they define well-being as relative to the individual’s mental states, whereas the last theory is “objective”, assuming a substantive view about what makes a life go well that is independent of the individual’s mental states (see SEP entry on well-being ).

These rival accounts of well-being clearly have different implications for the bearing of disability on individual well-being. If, as hedonic experiential theories hold, well-being is a matter of having positive experiences, whether disability reduces well-being depends on whether and to what extent it reduces the number or intensity of positive experiences enjoyed by persons with disabilities. On these theories, the self-reports of persons with disabilities carry considerable weight in assessments of well-being, at least if we accept the assumption that people are in a better position, epistemically, to assess the quality of their own experiences than other people’s. Indeed, most research on the well-being of people with disabilities relies on self-reports, and those reports do not confirm the grim views of third parties. Most people with disabilities report a quality of life similar to people without disabilities (Saigal et al. 1996; Albrecht and Devlieger 1999; Gill 2000; Goering 2008).

For similar reasons, self-reports ought to carry considerable evidentiary weight on desire-based accounts of well-being—though perhaps not as much weight as on the experiential view, if we have less first-person authority with respect to what our desires and their fulfillment than t we do with respect to our experiences. Self-reports have the most limited and contingent relevance on objective accounts, since individuals will not always be in the best position to know how well they are doing in various physical, social, and professional domains.

Some philosophers regard the implication that persons with disabilities can achieve levels of well-being equal to those of their able-bodied counterparts as a reductio of subjective accounts (see Sen 1980; Crocker 1995). And some disability scholars have been drawn to subjective metrics on the basis of their considered judgment that persons with disabilities can achieve levels of well-being that are at least comparable to those of their able-bodied counterparts. Despite this, subjective accounts may offer only thin practical support for the claim that disabled people are not handicapped in the pursuit of happiness. Many nondisabled philosophers and laypeople are inclined to doubt the reliability of disabled persons’ self-reports to the effect that they are doing well. Some suspect that these ratings are deliberately overstated to take account of their expected discounting by nondisabled people. Others regard them less as self-reports than as directives against pity or sympathy.

Even when self-reports are accepted as sincere, the interpretation of self-reported well-being is disputed (Menzel et al. 2002; McClimans et al. 2013; Barnes 2009b). Some psychologists and philosophers see those reports as distorted by adaptation or response-shift; by habituation to aversive experiences or a shift to more modest objectives or comparison classes (Menzel et al. 2002; Murray 1996; McClimans, et al. 2013). Indeed, the phenomenon of adaptation highlights some of the differences among rival accounts of well-being. Adaptation refers to a group of processes, though which newly disabled people change their habits, activities, and goals to accommodate their disabilities. Among those processes are developing new skills, changing comparison classes and goals, and habituating to pleasant or unpleasant experiences (Menzel et al. 2002). Although the first of these processes—the acquisition of new skills—might reflect a change in objective well-being, the latter two would not (unless feelings of satisfaction and pleasure are included on the “objective” list). But habituating to unpleasant experiences might improve well-being under a hedonic account by making the individual feel less pain or more pleasure. Similarly, insofar as changing one’s goals involves changing one’s desires, and insofar as one’s new desire-set is more satisfiable than one’s old desire set, the second process of adaptation would also yield an improvement in well-being on the desire-satisfaction view. By contrast, on an objective account of well-being, mere habituation and goal-downsizing habituation would not necessarily improve well-being.

Derek Parfit has coined the term “objective list theories” to refer to accounts that assess well-being in terms of a set of goods and activities that are objectively good for people (Parfit 1984: 493ff). Some of the more contentious questions about the relationship between disability and individual well-being concern what objective goods are indispensable for a good life and at what level of generality they should be described. Although “objective list theories” may suggest a simple checklist, they are better seen as recognizing (i) that there is an irreducible plurality in the goods of life and (ii) that their contribution to well-being cannot be expressed in terms of a common metric, like utility. Both (i) and (ii) distinguish objective list theories as a special case of objective or substantive-good theories of well-being. Martha Nussbaum, an influential objective list theorist, includes the following among her valuable capabilities and functionings: health, nourishment, shelter, sex, mobility; the ability to use one’s senses and to imagine, think, and reason; family and other relationships, attachments and love; living a life one has thought about and in some way chosen; laughter, play, and living in contact with the natural world (Nussbaum 1998: 135–156). It is difficult to see what unifies all these different categories, but item by item there would probably be widespread agreement on their value and importance for individual well-being.

Given that several of the items on Nussbaum’s ’98 list cannot be enjoyed by many people with disabilities, it follows that if high levels of well-being cannot be attained by someone who cannot enjoy all of the items on the list, then high levels of well-being are not attainable by many people with disabilities. If that implication is false, then the list must be changed. For example, even if it is necessary to include substantive goods or normative ideals in an account of individual well-being, it is not clear that all of the categories in Nussbaum’s list, for example, are necessary for high levels of well-being. As Jerome Segal (1998) points out, most of us would agree that a life can go very well without one or more of the capabilities Nussbaum regards as essential. Indeed, the most successful of lives of people lacking a single capability may go as well as the most successful lives of people with a standard complement of sensory and motor functions. Although a life could hardly go well without at least some of these capacities, we have no clear basis for establishing a minimum set.

In understanding how disability may be compatible with high levels of well-being, understood in objective terms, it is helpful to distinguish intrinsic from instrumental value. An activity may valuable for itself, e.g., seeing as a rich sensory experience; or instrumentally, for what it achieves or contributes to, e.g., seeing as a means of finding an object. As intuitive as the distinction seems, it is difficult to make clearly. First, there is deep disagreement about what is of ultimate value. Second, it is possible to parse many activities and conditions indefinitely into instrumentally valuable means and intrinsically valuable ends, e.g., making money or friends can be seen as an end in itself, or as a means to obtaining comfort and security (see SEP entry on intrinsic vs. extrinsic value ).

The social model of disability encourages us to recognize that many of the activities precluded by certain disabilities can be seen instrumentally, as means to valuable ends—ends that can be achieved by other means that are not precluded by those disabilities. As Asch contends (2003),

Those who maintain that disability forecloses opportunity, and that any foreclosed opportunity diminishes life, focus too narrowly on the activity and do not see it as a means to an end, e.g., … walking instead of mobilizing or exploring; talking instead of communicating.

As Asch suggests, much of what we value in seeing, talking, and walking is instrumental. We value them as ways of achieving communication with other people, reading, and moving from place to place, are themselves be bearers of intrinsic value. (Of course, we also recognize that these activities have instrumental value as well, e.g., for finding social partners and business opportunities). None of these valuable activities, however, is precluded by deafness, blindness, or paraplegia. Each can be achieved in alternative ways, by signing, reading braille, or operating a wheelchair. If these considerations are on the right track, they show that the instrumental value of species-typical functioning is exaggerated, because its ends can frequently be achieved in multiple ways, many of which are available to people with fewer, impaired, or atypical functions.

Disability scholars do not deny that typical sensory and motor functions can have great intrinsic as well as instrumental value, but they argue that their intrinsic value is often understood too narrowly. If, for example, we see the intrinsic value in sight not specifically in visual experience, but in sensory and aesthetic experience, then that value is not precluded by blindness.

It may be true that someone who cannot see or hear lacks experiences of great intrinsic value that are available to someone who can see or hear. However, the broad characterization favored by disability scholars seems most appropriate for assessing the role of intrinsic value in how well our lives go. For example, one obvious source of intrinsic value for standard sensory functions and activities is aesthetic—the beauty, richness, and complexity of the experiences they enable. But we do not regard color-blindness, tone-deafness, or impairments of smell or taste as inimical to well-being, although they preclude vast ranges of rich aesthetic experience. There is no reason to doubt that someone who has never had, or has long lost, those sensory functions (as opposed, say, to an visual artist or food critic who relies on them for her vocation) can lead a life as rich and rewarding aesthetically as someone who has those functions, despite lacking admittedly valuable experiences. This suggests that we cannot infer from the fact that there is great value in a function that those who lack it have lives that go significantly less well. It is only plausible to claim that a good life needs to contain certain kinds of valuable experiences and activities if those kinds of experience and activity are characterized very broadly. We will have more to say about this below, in reviewing the debate over whether disabilities can be seen as “neutral” characteristics.

Finally, even granting the significance of objective goods for well-being, it is not only their possession that makes a life go well. Also relevant is how a life seems to the person living it, and this reintroduces subjective elements. Common sense supports the view that individual well-being must have a subjective as well as an objective aspect; “two strands”, as Jonathan Glover puts it (Glover 2006: Chapter 3). Roughly speaking, well-being consists partly in having certain substantive goods and partly in being happy with (or being content with, or enjoying, or taking pleasure in) one’s life. But these strands may not be readily separable: the positive valuation of objective goods may be necessary for the possession of those goods to count towards well-being, or for their absence to count against it. Moreover, any plausible objective list must include enjoyment or pleasure, either as a free-standing good or as an aspect of valued states, activities or relationships.

The differences among standard accounts of well-being are particularly significant in thinking about the well-being of people with severe cognitive impairments. We believe that a separate discussion of this topic is warranted, but not because cognitive impairments are in a class by themselves. As we have noted, there are great differences among all types of impairments. Cognitive impairments, however, have until recently received relatively little attention in philosophy, and we give them special emphasis as a corrective.

Subjective accounts of well-being, hedonic and simple-desire accounts, appear easier to apply to people with such impairments, for two reasons. First, joy, pain, satisfaction, and frustration are more readily conveyed and assessed than the more complex mental states that informed-desire and objective list theories take into account. Second, people with cognitive impairments appear less capable of enjoying or attaining some items on standard objective lists: not merely various forms of achievement, but also a variety of social relationships and aesthetic experiences. More broadly, persons with cognitive impairments may be unable to form and pursue a conception of the good life. The conviction that persons with severe cognitive impairments can and often do enjoy relatively high levels of well-being thus seems to favor a more subjective account of well-being than that adopted for everyone else.

Even Martha Nussbaum (2006), a strong proponent of an objective account of well-being and of the capabilities of people with disabilities, fears that the premium her capabilities account places on choice may be excessive in assessing the well-being of people with the most severe cognitive disabilities, who lack the capacity to make meaningful choices in some or many domains. She favors a greater emphasis on functionings than capabilities for people with cognitive disabilities: on what they actually do or experience than on their capacity to choose among experiences, activities, and life plans. This suggests a way to modify her account so that more people with such disabilities reach a threshold of well-being. But it adopts different standards for people with severe cognitive disabilities as compared to other people, and raises the question of where and how to draw the line between those to whom each standard applies.

Some disability scholars may worry that the use of a double-standard is fraught with elitism and condescension. But it has a stubborn appeal, insofar as objective accounts seem too demanding when applied to cognitively disabled people. Jeff McMahan concedes that it seems “deeply and perniciously inegalitarian” to place people with severe congential cognitive impairments in a separate comparison class from cognitively normal people for purposes of assessing their well-being (2001: 160). But he argues that it is even less plausible and attractive to view such individuals as suffering grave misfortune, however well they do with their limited potential.

Of course, it could simply be the case that all else equal, people with severe cognitive disabilities do have lower levels of well-being than people without these disabilities. But all else need not be equal: it may be that many people with cognitive disabilities can achieve levels of well-being as high as others if they receive certain forms of support. For example, recognizing that cognitively disabled persons may require assistance if they are to develop and carry out conceptions of the good life, Nussbaum (2006, 2009) and Francis (2009) have proposed structured ways of assisting them to do so. Nussbaum suggests that people with even severe cognitive disabilities can have representatives or surrogates who enable them to participate, at least vicariously, in most social and political activities (2009; but see Wasserman and McMahan 2012 for limits on meaningful surrogate agency); Francis discusses “mental prostheses” that aid in constructing a personal conception of the good. She offers, as an example of a mental prosthesis, an actual device that allows people with Alzheimer’s to locate objects in their houses by touching an icon on their computer screen. The use of that device would not deny the user agency in locating the device, any more than a prosthetic foot would deny its bearer agency in running (Francis 2009: 203–204). Such a device could also allow cognitively disabled persons to communicate their preferences, but it is unclear how it enables them to form a conception of the good.

These are different approaches to securing the well-being of people with cognitive impairments, with different purposes. Nussbaum seeks to facilitate the exercise of, or the capacity for, valuable functionings such as social affiliation, meaningful work, and political activity. Francis’s goal is broader and less concrete: to promote the participation of people with cognitive impairments in developing conceptions of the good that accord with their desires and that offer reasonable prospects for fulfillment.

Both approaches receive some support from empirical research. Disability theorists such as Goode 1994 and Ferguson 2001 maintain that people with significant cognitive and communicative impairments can and do have the capacity to choose among alternatives if those choices can be formulated in ways they can comprehend, or if their non-impaired intimates or caregivers can learn to read the ways in which they actually express their preferences, in order to help them make their lives go the way they want.

Many plausible accounts of well-being can explain why life can and often does go comparably well for people with most disabilities relative to people without disabilities. There are unresolved issues about how broadly the objective elements of well-being can be framed without becoming so broad as to lose distinct content. But these questions may be less about disability and more about objective list theories generally.

Some philosophers have argued more affirmatively that disabilities are “neutral” characteristics or “mere differences”, with no average or generally adverse impact on well-being. They argue that disability should be regarded as a characteristic like race or sex, which are widely seen as neutral with respect to well-being, once discrimination and its effects are factored out—or even if they are not. Disability is grouped with these characteristics in anti-discrimination law. But it is also grouped with those characteristics by writers who argue, more ambitiously, that disability, no less than race or sex, is a neutral characteristic—one that, in the absence of social exclusion, does not make lives go any worse on average (Barnes 2009a; McBryde-Johnson 2003). These writers do not deny that becoming disabled may make life go worse for some time, but no more so than other wrenching changes, like losing a job, home, or loved one. In the former case as well as the latter, the bad or harm is in the transition—in the loss and disruption—and not in the end state. Any disadvantage that persists after the transition is plausibly attributed to social factors.

There are various ways to distinguish disabilities, on the one hand, from neutral characteristics like race and sex, on the other. The distinction can be easily made on a maximalist view of well-being which holds that life is presumptively better with more valuable capacities. In contrast to race and sex, disabilities, by definition, involve fewer valuable capacities, so they presumptively make life go worse. It is simply better to have more senses, more intelligence, and a greater range of motion, even if they do not make one happier, have limited practical value, and do not advance one’s specific projects. This view regards standard disabilities as among the most salient limitations to which humanity is subject. Less is always worse, although how much worse will depend on contingent circumstances. But many philosophers reject maximalism, in part because they balk at the implication that we should strive to acquire, and bear children who will possess, the greatest number and range of possible capacities.

Jeff McMahan offers a non-maximalist argument against the neutrality of disabilities, based on a view of how people with single impairments flourish despite them:

A single disability may seem neutral because it can be compensated for by other abilities that develop to fulfill its functions. Blindness, for example, may be compensated for by the enhancement of other senses, particularly hearing. But if disabilities were individually entirely neutral, they ought also to be neutral in combination; but they are not (2005: 96).

Some might dispute McMahan’s claim that disabilities cannot be neutral in combination, but our focus here is his claim that neutrality for individual disabilities implies neutrality in combination. In support of this claim, he argues the effects of disabilities on well-being “are largely additive”, because with each further disability, it becomes harder to compensate for other disabilities. This argument assumes that the possibility of living as well without as with any given ability depends on the possibility of compensating for its absence. This assumption may be mistaken: the possibility of flourishing with a single disability may depend not on compensation but on what we could call “saturation”. A blind person can live as well as a sighted one not because she develops better hearing—she may not—but just because the senses and abilities she has are more than adequate to allow her to live as fully and richly as possible. As Asch and Wasserman argue:

[H]uman beings enjoy a fortunate redundancy in many of the capacities that are instrumental for, or constitutive of, valuable human goods and activities, from intimate relationships to rewarding work. Humans with a standard complement of senses and motor functions rarely use all of these functions in achieving such goods, and humans lacking those skills can use only some. But those are usually sufficient (2005: 208 ).

There may be a limited number of ways to realize important human goods like rich aesthetic experience, and those with disabilities may have fewer ways to do so. But the ways they have may be as good as the ways they lack, and employing the ones they have need not be seen as compensating for their inability to employ the ones they lack. Having more ways to realize a good does not mean that you can realize it more fully.

This response, however, suggests two final sources of difference, both of which involve what we might call “welfare security”. Even if people with a single major disability can live as well as people without one, 1) it requires more effort or luck for them to do so, and 2) they are at greater risk of lacking the means to do so. The first claim is that the fewer means there are to achieve a particular good like rich aesthetic experience, the more difficult it may be to achieve it. An individual who can meet his aesthetic quota, so to speak, with sunsets or symphonies, doesn’t have to work as hard or need as aesthetically rich an environment as one who can meet his quota only with symphonies. The second claim is that people with single disabilities are at greater risk than people without any disabilities of losing the means to achieve various goods, since they have a smaller surplus or reserve. The plausibility of these claims depends on a myriad of unresolved issues: Is there an irreducible plurality of objective goods and if so, how they are individuated? Are there a limited number of means for attaining those goods? If it requires greater effort to attain a particular good with fewer functions, does that additional effort itself enhance or reduce well-being?

Another argument for the conclusion that disabilities entail setbacks to well-being is suggested by the human variation model (Scotch and Shriner 1997). This treats disabilities not as a distinct category, but as conditions falling on a continuum of physical or mental difference. It is not intrinsically disadvantageous to be near the end of such a continuum but may be disadvantageous in a society in which only a small proportion of people fall near that end. This is because many of the physical structures and social practices of that society will inevitably be designed for its average members. No matter how just a society, how committed to inclusion, there would still be some disadvantage in being toward the end of the spectrum. There may be some truth to this claim, but it is easy to overstate. Universal design advocates argue that it is, or will become, feasible to build structures and practices that fully or equally accommodate individuals across large ranges of human variation. Even if their claims are also overstated, they suggest a need for caution in concluding that minority status is intrinsically disadvantageous.

Perhaps the most tenacious source of resistance to the “mere difference” claim comes from a stubborn asymmetry, which appears to distinguish disability from race and sex and to challenge its neutrality. We generally seek to prevent individuals who are not disabled from becoming disabled, but not vice-versa. We strongly support measures to prevent disability, if prevention can be accomplished without coercion, harmful side effects, or the loss or disruption of personal or narrative identity. Consider a form of prevention widely seen as unproblematic: taking folic acid during pregnancy to prevent spina bifida. Some governments mandate that certain food be enriched with folic acid. These mandates are controversial, but the controversy concerns the issues of involuntary medication and possible side-effects rather than the intended preventative effect. Few, if any, disability advocates object to these mandates, any more than they object to the myriad safety measures imposed by the modern state, from requiring seat belts to restricting teratogenic drugs. Many object to the needlessly grim depiction of disability in some safety campaigns; few to the campaigns themselves (Emens 2012).

No such asymmetry exists for other allegedly neutral characteristics. There would be strong opposition to government measures to prevent them, alter them, or reduce their incidence. Imagine that a dietary supplement as safe as folic acid could alter the sex of the fetus, or lighten its complexion. We suspect that most people would find it troublesome for pregnant women to take that drug voluntarily, let alone for the government to put it in the food supply. Or imagine a fluoride-like substance with a similar effect, which could be safely added to the water supply. Fluoridation to prevent female sex or dark skin would strike most people as offensive, even though it would not prevent the existence of anyone on the basis of a disfavored characteristic, at least if personal identity survives alteration of race or sex. The claim that women or people of color lead worse lives on average due to pervasive discrimination would not be seen as a justification for changing sex or race. Undertaken by an individual, it would be seen as complicit with sexism or racism regardless of its motivation; undertaken by the state, it would be seen as an egregious expression of racism or sexism. Public health measures to prevent disability, like dietary supplements, would not provoke similar objections. In general, measures to alter other significant characteristics—not only race and sex, but minority cultures, sexual orientations, and social identities—would be considered unjustifiable or only justifiable in special circumstances. By contrast, measures to prevent disabilities are considered presumptively acceptable.

The contrast between sex and race, on one hand, and disability on the other, is especially striking in light of the fact that in the former, measures to alter stigmatized social identities are often regarded as more objectionable than measures to alter dominant social identities that are not stigmatized. Just the reverse is true for disability. Giving deaf children cochlear implants is somewhat controversial; deafening hearing children would be considered criminal abuse. And this would be so even if the children were too young to have the self-conscious experience of hearing, had no other effects from being deafened, and faced no discrimination on the basis of deafness. These contrasts raise the question of whether the asymmetry with respect to disability-prevention is compatible with the view that disabilities are neutral characteristics—that they do not make life go worse overall.

Recently, Elizabeth Barnes has sought to challenge this perceived asymmetry between measures to prevent or correct disabilities and other significant characteristics. She attributes much of the objection to changing sex or gender to moral considerations equally applicable to “correcting” disability: 1) they would violate the individual’s right to control her own body unless consented to; if consented to, they would be permissible elective procedures (as would, Barnes maintains, procedures to create disabilities); and 2) such procedures generally involve considerable loss and transition costs—but so do procedures to correct disabilities, as many “cure” narratives attest. For preventative measures not involving bodily modification, loss, or transition costs, Barnes argues that the claimed difference between preventing disabilities and preventing less favored races or sexual orientations is simply question-begging—no good reason has been given to accept the former and reject the latter, merely the “negative-difference” view the intuition is supposed to support.

Barnes’ argument, not surprisingly, has proven controversial. Several commentators sympathetic with mere-difference claims for some disabilities have questioned Barnes categorical claim for all disabilities; others have questioned whether she is too quick to accuse those claiming an asymmetry in the case of preventative measures of begging the question (see Dougherty 2014).

Yet even if disability could be regarded as neutral if other features contingently associated with it, such as social exclusion, physical pain, and the loss of valued functions, are factored out, that conclusion might have limited practical significance for decision makers who cannot factor out those features. As noted earlier, the question of whether it is disadvantageous may have a different answer for those who can significantly modify the physical and social environment and those who cannot. Many decision makers, from prospective parents to healthcare policy makers, will fall in the latter category.

Before discussing specific decision making contexts, then, we need to consider arguments that significant disabilities can be neutral, in the sense of not reducing overall well-being, even if various contingent harmful features are not excluded. We will examine two grounds for claiming that disabilities, including painful, disruptive, and stigmatized ones, need not reduce overall well-being, although they may still be conditions worth preventing: 1) if disabilities deny some valuable experiences and achievements, they provide others, which may not be accessible, or may be less accessible, to nondisabled people; and 2) there is a non-additive relationship between parts or aspects of a life and life as a whole.

Barnes (2009a) argues that having a disability can make an individual’s life more difficult and challenging at some points without making it go worse overall, or even making it more probable that it will. The challenges of disability are like those of other minority characteristics such as homosexuality; facing those challenges can give a life greater depth or direction. For example, some individuals who are disabled in adolescence or adulthood find that their previously shallow or aimless lives gained focus and purpose from the challenges they faced, and some individuals find that they acquired new skills or interests more rewarding than those precluded by their impairments. Because such enriching responses are so common, there is no basis for concluding that people with disabilities have a lower quality of life overall. But because disabilities

are, in general, the kinds of things that make life harder—they impose limitations, they cause pain, they subject their bearers to stigmas and discrimination (2009a: 339)

—they are associated with with harms and should be prevented in some circumstances. They should not, however, be regarded as “negative difference-makers”—conditions that necessarily make lives worse overall.

In blocking the inference from disability as a harm to disability as a negative difference-maker, Barnes adduces instances of the positive consequences that disabilities have had for specific individuals, despite or sometimes because of the “local” hardships they cause. It may be, however, that no positive consequences are needed to “neutralize” the hardships associated with a disability. Those hardships may simply get absorbed in the immense complex of factors that make a life go better or worse. It is only on a simple additive view of the relationship of parts to whole that a local harm would necessarily make a life go worse unless compensated for. It is difficult to be more precise about the impact of disability on whole lives, however, because it is not clear how the goodness or badness of parts of a life contribute to the goodness of the whole, on either objective or subjective accounts of well-being (Feldman 2008). David Velleman has argued that whatever one’s particular theory of individual well-being, the parts of a life do not contribute to the goodness of a life additively. That is, the goodness of a whole life is not the sum of the goodness of its parts. Instead, the goodness of a whole life is to be understood in terms of the narrative relations between its various parts. From this perspective, successes or failures at particular times in one’s life can retrospectively alter the meaning or significance of earlier ones (Velleman 1991).

Recent accounts of noncomparative harm (Harman 2009; Shiffrin 2012, 1999) provide additional reasons to challenge the inference from disability as harm to disability as negative difference-maker. These accounts reject the prevailing, counterfactual analysis of harm as a setback to an individual’s interests with reference to some baseline—her past, her expectations, or the average of her group or society. Instead, they understand harms as fundamentally bad states or events, like pain, disability, and death; states or events that (proponents of these accounts claim) can be regarded as bad without reference to any baseline. On these views, an individual is harmed merely by suffering pain or injury, regardless of whether that pain or injury leaves her worse off overall. She is harmed by painful life-saving surgery, although that averts a greater harm, or life-transforming disability, although her life may go much better as a result.

Obviously a critical question for these accounts is what makes something a noncomparative harm (Bradley 2012). Harman (2009) offers no general characterization of noncomparative harms; Shiffrin characterizes such harms in terms of a significant chasm, conflict, or other form of significant disconnect between one’s will and one’s circumstances (2012: 388). Disabilities, injuries, and illnesses and typically regarded as harms in these terms because they “often significantly impede one’s capacity to achieve substantial congruity between one’s will and one’s life (2012: 384). Shiffrin recognizes both that one’s circumstances may narrow that chasm considerably, and she considers it a strength of her account “that it can recognize quotidian conditions such as ordinary conditions as harms” (2012: 387, n. 46). Although Shiffrin does not take this additional step, it would seem that if ordinary conditions can be harmful in damaging one’s agency, extraordinary ones can be harmless, if they were congenital, predictable, or successfully adapted to, such that congruity between one’s will and one’s life is never lost, or is quickly restored. Further, although Harman and Shiffrin, like Barnes, regard the onset of most disabilities as harms, they also, like Barnes, hold that such harms need not make life go worse overall.

Another factor associated with disability—reduced lifespan—arguably has an adverse impact on well-being. Many disabilities, or their associated disease processes, result in lower-than-average life expectancy, though it is worth emphasizing that the relationship between disability and reduced lifespan is contingent, and so even if reduced lifespan necessarily reduces well-being, it would not follow that disability necessarily reduces well-being. Moreover, it is not clear that reduced lifespan necessarily reduces well-being. It is at least arguable that living to 80, with the last 5 years of one’s life in severe pain, does not yield more well-being than a life of 75 relatively painless years. And it is at least arguable that longer lives correlate with greater well-being because they enable one to pass through all of life’s stages—childhood, adolescence, young adulthood, middle age, and gradual aging—but that having passed through all of life’s stages, additional years yield small increases in well-being. Clearly, these are complicated issues that deserve more attention. We simply note that there is no straightforward inference to be drawn from disability’s correlation with reduced lifespan to disability’s having an adverse effect on well-being.

1.5 The Impact of Disability on Well-Being: What is at Stake?

This subsection will examine how assumptions about the relationship between disability and well-being that have been challenged in academic debate continue to play a significant role in reproductive and health-care decision making. We discuss four contexts in which these assumptions have been relied upon in policies and personal decisions about creating or sustaining lives: reproductive testing for disability, neonatal care, “end-of-life“ decision making, and the use of ”quality-adjustment” measures to assess the cost-effectiveness of health-care and other interventions.

In all of these cases, objections have been raised besides those concerning the assumption that lives with serious disabilities must be substantially worse than lives without them. For example, in the case of life-termination, the debate also concerns the decisional capacity of newly disabled individuals; in the case of quality-adjustment, the debate also concerns the assumption that the quality of a life should affect its priority in allocating scarce resources. We will, however, focus on the objections that concern well-being.

Some prospective parents see life with some disabilities as worse than no life at all. This claim is often made with respect to such conditions as Tay-Sachs, Lesch-Nyan, and trisomies 13 and 18. Even for those conditions, however, that view is not universally held (Wilkinson 2011). The notion of a life so bad that it is a harm to the individual living it came to popular and philosophical attention in the 1980s, when a number of lawsuits in the U.S claimed that physicians or parents had wronged the child by failing to diagnose its condition in utero and/or prevent its birth. These lawsuits appeared to require a comparison of existence and non-existence, which most courts and some philosophers rejected. A majority of philosophers, however, starting with Joel Feinberg (1986), have concluded that the notion can be useful in theory if not necessarily in practice.

In cases involving less severe disabilities, some prospective parents think that they are protecting the welfare of “their child” by preventing the existence of a child who would have a disability. This attitude involves seeing the future child not as a particular individual who can only exist with a disability, but as a role that prospective parents do not want to fill with a disabled child. Philosophers have debated the appropriateness of regarding future children in this way (Malek 2008; Hare 2007; Velleman 2008; Wasserman 2008; Heyd 2009). Even if this view were appropriate, its moral force would depend on the extent to which the diagnosed condition could reasonably be expected to reduce the child’s welfare, as well as the existence and strength of a moral reason not to bring into existence persons with such welfare deficits.

In the context of prenatal testing, as with assessments of adult functioning, the extent to which a disabling condition reduces well-being depends on the conception of well-being that is adopted. With prenatal testing, however, there is an additional complication: there is massive uncertainty about how the detected variants will be expressed in the developing child. That depends on their their interplay with other genes and interaction with a variety of environments. The formidable challenges of predicting phenotype may be more readily acknowledged by health professionals than the even more daunting challenges in the non-medical assessment of how life with a given phenotype could go for the person living it.

The debate over the withdrawal of life support for very premature and severely disabled newborns surfaced in the 1980s with the 1982 Bloomington, Indiana Baby Doe case and the adoption of federal guidelines for support of newborns and termination of life-sustaining treatment. The debate continues as medical technology permits an increasing number of severely disabled newborns to survive. Some of the debate appears fairly abstract, concerning whether there should be a “grey area” around “a life (just barely) worth living”, in which parents and physicians would be permitted to decide for themselves whether to continue or withdraw life-support (Wilkinson 2011). Disability scholars, however, have the more practical concern that decisions about life-support, whether made by parents or caretakers, too often rely on inaccurate or misleading medical indicators of expected well-being, resulting in significant discrimination against newborns with disabilities (Silvers and Francis 2011). Although the accuracy of medical prediction may improve after birth, it remains difficult to assess the potential of a neonate to develop higher cognitive functions. And although the prediction of the course of physical impairments has improved, that improvement offers only a partial safeguard against the tendency of many parents and health professionals to exaggerate the hardships of life with an impairment—a tendency driven as much by stigma as by medical error and uncertainty.

Assumptions about disability and well-being play an important if somewhat less salient role in this context. They figure most prominently when the individual is no longer capable of deciding for herself whether to receive, continue or refuse life-sustaining treatment. For adults once capable of making such decisions, two standards apply to surrogate decision making: substituted judgment and best interest. The first involves judging what the individual would have wanted or chosen if she could want or choose for her current situation; the second involves judging the person’s interests by a standard other than her own. In cases where the adult never had decisional capacity and there is no basis for making a judgment about what the patient would have chosen, the best interest standard applies. But those who judge the best interests of such an adult are prone to the same errors of projection as nondisabled people judging the well-being of disabled people. A nondisabled surrogate might be devastated at losing capacities the cognitively impaired individual never had, or assume that the inability to understand the source of, or reason for, physical pain must be even more traumatic for that individual than it would be for the surrogate. Such judgments are not clearly wrong, but rather speculative; the primary error is in overconfidence.

Assumptions about disability and well-being also play a significant role in judging the reasonableness of requests by competent adults to end, or not receive, life sustaining treatment. Many jurisdictions recognize the right of such individuals to make this decision for themselves, but disability advocates remain concerned that their decisions are more likely to be considered reasonable, and respected, if they are made in response to severe, permanent disabilities. Thus, in the influential case of Elizabeth Bouvia, the court allowed a fully competent, severely disabled, women to refuse the medical support that could have prolonged her life indefinitely. Critics of the decision maintained that both Bouvia and the court were unduly swayed by the perceived indignity of her physical dependence, and by their difficulty in seeing how life could go very well with a severe disability (Asch 2005; Gill 1992; Longmore 1987).

Perhaps the setting in which the relationship of disability to well-being has received most attention is the assessment of “quality of life” (see, generally, Wasserman, et al. 2005a). For judging the cost-effectiveness of medical interventions, it is useful to have measures of well-being that facilitate quantitative comparison. Quality-of-life measures in medicine and health care offer benchmarks for assessing the well-being of groups of people, focusing on the aspects of well-being most amenable to reliable assessment. There is no guarantee that individuals who are doing well by such measures are actually living good lives according to more robust philosophical criteria of well-being. Any uniform metric for quality of life will provide an oversimplified assessment of an individual’s well-being, and to some extent this is unavoidable from a policy perspective. But the worry when these judgments are applied to people with disabilities is not oversimplification so much as systematic bias.

Assumptions about the adverse effect of disability on well-being pervade the measurement of “health-related quality of life” (HRQL). In particular, two features of many standard approaches to measuring HRQL treat disability as inimical to well-being: 1) assuming that an individual’s adaptation to a disability is a source of distortion or a measurement artifact in assessing how well he or she is doing; 2) expanding the definition of health outcomes to include not only the physiological and sensory-motor effects of disease and injury, but their “sequelae”—their effect on daily living and social participation. The first feature ignores the extent to which adaptation involves changes that would count as improvements in well-being on most objective as well as subjective accounts (Menzel et al. 2002; Barnes 2009a). The second fails to distinguish the contribution of medical and social/environmental factors to the restriction or loss of objectively valuable activities (Wasserman, et al. 2005a). These features not only exaggerate the adverse impact of disabilities, but in some contexts, threaten adverse consequences for people with disabilities.

The inclusion of functional and activity limitations as health outcomes is in tension with the social model of disability, which treats many of those limitations as due to an exclusionary environment. It also conflicts with the view, discussed below, that an individual can be disabled but healthy. The assumption that adaptation to disability cannot be an accurate measure of well-being has motivated a reliance on health professionals to assess the quality of life with specific disabilities, rather than on people with those disabilities (Murray 1996). The refusal to treat people with disabilities as reliable witnesses to, or authorities on, their well-being is particularly striking, given that nondisabled people also adapt to the vicissitudes of their lives (Brickman and Campbell 1971). As Wasserman, et al. note:

The lives of people with disabilities are assumed to be of low quality, whatever environmental factors mediate the impact of their impairments, and their own testimony to the contrary is seen as inherently unreliable. Their adaptations to their impairments appear not as instances of the universal processes of adjustment to changed circumstances, but as disability-specific strategies for recovering the ground that has been lost, or for covering up its loss through benign self-deception (2005a: 11).

This view of disability is not merely inaccurate. Its use to assess the effectiveness of health care interventions has disturbing implications for the lives of people with disabilities. Effectiveness measures typically treat a disability as equivalent for assessment purposes to a shorter life-span. Health outcomes are measured by life-years saved or gained; life-years are “adjusted” by their quality, and their rated quality is substantially reduced if the intervention fails to correct, risks causing, or causes a disability. As a result, people who have, or will be left with, disabilities also have their future life-years adjusted downward in light of the presumed lower quality of those life-years. As a result, the priority of persons with disabilities for life-saving interventions is substantially reduced. Because it employed such discounting, the 1990 Oregon Health Care Plan to set priorities for Medicaid-funded procedures was found to discriminate against people with disabilities (Bodenheimer 1997). Several years later, the most comprehensive international effort to develop summary measures of population health proposed a more explicit and very sharp discounting of lives with disabilities in assessing the “Global Burden of Disease” and in setting priorities for its reduction (Murray 1996). Although some objectionable features of the discounting methodology have been modified (Saloman and Murray 2002), the Global Burden of Disease frameworks continue to adopt procedures that result in strikingly low quality-of-life estimates for many disabilities.

Many mainstream philosophers and bioethicists question the use of summary health measures in priority setting (Harris 1987; Brock 1995). They argue that their proposed use is based either on a questionable utilitarian assessment of lives as more valuable if they “contain” more utility, or on the controversial distributive principle that society should give scarce goods to those who will benefit most from them. But many still defend the general assumptions about disability and quality of life that informed those measures (Brock 2005). Other philosophers and disability scholars have challenged these assumptions (Bickenbach 2005). Some have gone even further, questioning whether quality-of-life assessments place an exaggerated premium on the prevention or correction of impairments that do not, in hospitable environments, preclude rich and rewarding lives (Barnes 2009a; Asch and Wasserman 2010).

2. Disability and Health

People appear to regard health as one of the most important goods, more important than wealth, status, or professional success. Health is seen as special in part for instrumental reasons, because it is thought to be a prerequisite for many or most other goods. So the relationship of health to disability is an issue of central concern for those who seek to replace or supplement a medical model of disability (Bickenbach 1993; Shakespeare 2006).

The social model of disability, which informs the Americans with Disabilities Act and kindred legislation, may appear to move disability away from health policy and toward civil rights. Yet movement in one direction does not preclude movement in the other. People with disabilities have significant health care needs, and their needs may depend to some extent upon their disabilities. For philosophers as well as policy makers, the challenge posed by the social model is to acknowledge the importance of health and health care for people with disabilities without assuming that all people with disabilities are unhealthy just because they are disabled, and without overemphasizing the correction or mitigation of impairments. This requires a careful examination of the relationship between health and disability. Do all disabilities result from, or in, a loss of health? Can a person with a disability be in good or even “perfect” health? To answer such questions, we need a serviceable theory, concept, or definition of health.

There are a variety of competing philosophical accounts of health (see SEP entry on concepts of health and disease ). They can be distinguished in several ways: 1) some regard health as the mere absence of disease (e.g., Hofman 2005); others regard health as a form of well-being or flourishing, and treat the absence of disease as at most a necessary condition of health (e.g., Carel 2007 and WHO 1948); 2) some regard the concept of health as value-laden, or normative, in the sense that the good of health enters into its very concept (e.g., Engelhardt 1986; DeVito 2000); others regard health as value-neutral, or non-normative, defined by bio-statistical or other biological criteria (e.g., Boorse 1987 and Wachbroit 1998); 3) some see the value of health as instrumental, in the capacity of the agent or organism to achieve certain goals (e.g., Nordenfeldt 1995); others see its value as intrinsic as well, as good in itself (e.g., Becker 2005).

These distinctions are not independent of each other. Non-normative accounts of health tend to treat health as the absence of disease, dysfunction, or deformity. These accounts also tend to be instrumental: they define health as normal or species-typical biological functioning, which is itself defined in such goal-oriented terms as survival and reproduction. On the other hand, instrumental accounts that define health in terms of the pursuit of an individually, culturally, or other variable range of goals will tend to weaken the connection of health to bodily, cognitive, or affective functioning.

If health is defined simply as the absence of disease, then a person can be disabled but healthy if and only if he can be disabled but not diseased. If, however, health is a state of psychophysical flourishing or vitality, then an individual can be healthy, although perhaps not perfectly healthy, even if disabled or diseased, and unhealthy even if free of disability or disease.

Many philosophers and bioethicists take it that “health”, “disease”, and “disability” are value-laden, that it is part of their meaning that the conditions to which they refer are (inherently) desirable or undesirable (e.g., Engelhardt 1986 and DeVito 2000). Two notable exceptions are Christopher Boorse and Robert Wachbroit, who offer biomedical definitions that are value-neutral, or as Boorse claims, as value-neutral as biology itself (Boorse 1987: 359–93; Wachbroit 1998: 533–38). They define health in terms of normal or species-typical physical and mental functioning, so that disabilities are by definition unhealthy. But such value-neutral accounts do not assume that disabilities are therefore bad or undesirable, merely atypical. [ 2 ]

Since they deny that the goodness of health is part of its definition, value-neutral accounts stress the enormous, but contingent, instrumental value of health. The leading attempt to explain the importance of health in these terms is Daniels’ account of health-care as maintaining or restoring fair equality of opportunity (Daniels 1985). Daniels’ account gives a priority to the maintenance of typical functioning and the correction of disabilities that many critics find excessive (Wasserman 1998: 152–58). Still, the core intuition, concerning the enormous practical value of species-typical functioning, can be accepted without accepting medical normalization as the preferred or default response to atypicality; indeed, without accepting the claim that species have functions with species- typical levels defined in biological terms (see Amundson 2000). Further, the claim that species-typical functioning is instrumentally valuable leaves open the question of why departures from species-typical functioning are instrumentally disvaluable : is it because they render one vulnerable to discrimination, subject one to an unaccommodating environment, cause medical problems, or all of the above?

Yet most people have a strong conviction that practical advantages do not exhaust the value of health, nor practical disadvantages its disvalue. To accommodate this conviction, those accepting a narrow definition of health as the absence of disease may want to acknowledge that disease, or its usual symptoms or consequences, has inherent disvalue, while distinguishing disability from the other symptoms or consequences of disease, particularly pain and death. Those adopting a broader definition of health as an aspect of well-being or flourishing may also want to claim that being unhealthy has inherent disvalue, while distinguishing disability from a lack of health.

The distinction between disease and disability has received surprisingly little attention in the philosophical literature. Most statutory and other official definitions either treat serious diseases as disabilities or make “impairment”, “loss of function”, or “structural/functional abnormality” an element of disability, leaving the relationship of disease to disability unclear (e.g., Americans with Disabilities Act, 1990 or Disability Discrimination Act, 1995). One of the few detailed analyses of the relationship between disease and disability was offered by Ron Amundson, who proposed that disability should be understood as one of the three general consequences of disease, along with pain and death (Amundson 1992: 105–119). Amundson adopted Boorse’s value-neutral account of health, but argued that Boorse defined “disease” too broadly, as a “deviation from the functional organization of typical members of a species”—a definition which would encompass most disabilities. Amundson contended that it was both clearer and closer to common usage to treat disease as an atypical process that tended to result in disability, pain, or death. [ 3 ]

Amundson defined disability as the loss or deviation from a particular kind of species-typical function: action at the personal level, e.g., the inability to move one’s arm, as opposed to the inability to metabolize sugar. Disabilities that are not products of a process that leads to pain, death, or further impairment are not symptomatic of disease in Amundson’s sense. They are consistent with health narrowly defined. Yet some philosophers (Hausman 2001: 254) find the notion that individuals can be in excellent health if they are blind, deaf, or paraplegic sufficiently implausible to count against analyses of health with that implication.

The disagreement between Amundson and Boorse on the distinction between disease and disability is not just a matter of semantics. The critical point in Amundson’s analysis is a practical one. Medical interventions are the presumptive response to disease; they seek to slow, arrest, or reverse processes that cause pain and may lead to physiological dysfunction, (further) disability (in Amundson’s terms), or death. But on Amundson’s view, which makes disability consistent with health, the presumptive response to disability need not be medical as opposed to environmental or social. Furthermore, the loss of opportunity associated with disabilities can often be prevented or mitigated more effectively and (in the long run) more economically by modifying the physical and social environment than by medical intervention. This is true even though environmental measures are likely to fare poorly against medical interventions in the competition for scarce resources, because of the prestige and perceived importance of medical treatment. The failure to distinguish disease and disability, and the tendency to favor a medical response for both, reflects the sway of the medical model, and offers a clear illustration of how it differs from the social model (see SEP entry on disability: definitions, models, experience ).

Recently, Peter Hucklenbroich has proposed a harm-oriented account of health as the absence of a “disease” process. Such a process is pathological in the sense that:

• it is immediately lethal or definitely life-shortening, [or]
• it is a condition of pain, suffering, or other specific complaints, [or]
• it is a condition of infertility (incapability of biological reproduction), [or]
• it is a condition of inability or impairment for living together in human symbiotic communities, [or]
• it is a non-universal disposition of the organism to develop a condition that is pathological according to one or more of these criteria. (12) [ 4 ]

Hucklenbroich’s account defines health in terms of a list of reasonably health-specific harms and it restricts health to the absence of biological conditions that either (a) directly involve harm or (b) dispose one to suffer harm.

An account along these lines may have the potential to distinguish disease from disability so as to make the former immediately relevant to well-being in a way the latter is not. Unlike purely non-normative accounts, it only finds a health-decrement where something bad comes from the state of the body. Unlike capaciously normative accounts, it defines these “bads” in terms of a general and health-specific harm; not just any body-based limitation on the pursuit of our (potentially idiosyncratic) goals makes us unhealthy. And finally, defining health in terms of bodily dispositions could help to explain why extrinsic factors, like those cited by social models of disability, are irrelevant to health. It could distinguish between harms that come from social responses to the body from harms that come from the body itself; thereby distinguishing between harms that generate claims on health care and harms that generate claims against discrimination or the denial of fair equality of opportunity.

Despite the importance of distinguishing disease from disability, there are at least three reasons why it is difficult to do so. First, as noted above, many or most diseases are defined as disabilities by disability discrimination laws or their judicial and administrative interpretations; they are subject to the same legal protections and requirements of reasonable accommodation as “Amundsonian” disabilities. This legal treatment may, however, be justifiable, because some diseases, such as AIDS, are stigmatized as severely as many or most disabilities. Second, many disabilities, such as the inability to walk, may be associated with diseases, such as MS, which have a progressive character, causing pain and further impairment, and sometimes increasing the risk of death (Wendell 2001). [ 5 ] Third, a society such as our own, where atypical functionings are often not well accommodated, accords a higher priority to the prevention or treatment of some non-fatal diseases than would a society that better accommodated them.

An alternative approach to the relationship between health and disability involves a broad or positive conception of health as more than, or distinct from, the absence of disease or disability. This approach has more and less instrumental versions. The former is represented by Nordenfelt’s account of health as the ability of an individual to reach her “vital goals”—those whose achievement is independently necessary and jointly sufficient for minimal happiness (Nordenfeldt 1995). On such an instrumental account, the relationship of disability to health depends on the goals that are considered vital or central and on the role of typical functions in achieving them. Some impairments will hinder the pursuit of some goals (goal-based accounts of health vary in whether or how they specify the relevant environment(s) affecting their pursuit), other impairments will have no effect, and some will enhance the pursuit of some goals. Any generalizations about the impact of impairments on health will depend on the assessment of their net effect on the pursuit of the specified goals.

The breadth of an instrumental approach is apparent in Sridhar Venkatapuram’s variation on Nordenfeldt, which replaces the latter’s mix of universal and personal “vital goals” with the “basic capabilities for minimal happiness”, as enumerated by Martha Nussbaum. “What is important”, Venkatapuram maintains, is “the idea of health as the capability to achieve a cluster of basic capabilities and functionings” (277). Far from denying that this conception resembles the much-ridiculed 1948 WHO definition of health as “a state of complete physical, mental, and social well-being”, Venkatapuram just alters that definition to refer to a capability for minimal well-being. Nor does he shirk from the practical implications of this conception:

“Health policy and expertise will have to encompass all the determinants of the core human capabilities that constitute a minimally decent life” (278).

At the same time, he recognizes a narrower conception of health, treating it as one of the more specific capabilities that health in his broader conception encompasses. Health in this narrow sense is just the capacity to avoid disease and impairment. But it is unclear why even health in this narrow sense should be a constituent of well-being, given the fact of human mortality and vulnerability.

Lawrence Becker has proposed a broad but less instrumental conception of health, examining positive conceptions of health in other disciplines, specifically models of positive mental health in psychology, which incorporate notions such as resilience, robustness, developmental maturity, character strength, and subjective well-being (Becker 2005). Such conceptions go beyond the absence of disease in two ways: they are positive, requiring psychophysical vitality—robustness, vigor, and resilience—and they are broad, concerned not merely with biomedical functioning but with more comprehensive well-being.

More recently, Becker (2012) argues for “basic good health” as the metric for “basic justice”. For Becker, basic good health is defined in interactive terms, as “reliably competent physical and psychological functioning in a given environment” (2012: 45). As David Crocker (2013) observes, this notion

has both negative and positive elements. The negative dimension includes absence of disease, illness, disability, and other impairments. The positive aspect is … ”robustly active agency. To be healthy is to have a kind of agency appropriate to the stages on life’s way—from infancy to mature adulthood to old age.

This positive aspect of basic good health, if not the notion as a whole, gives support and structure to the claim that one can be disabled but healthy. It could also promote the development of health interventions for people with disabilities that are not directed at the normalization of their atypical or impaired functions. One challenge for this approach is to limit the scope of positive health, so that it does not encompass all aspects of well-being, but remains anchored in biomedical functioning. A second challenge for this approach is to explain how cognitive and affective conditions bear on health, and how any adverse effects of such conditions can be mitigated or eliminated without medical normalization.

3. Personal Relations, Family, and Disability

Although the connection between disability and interpersonal relationships is a topic worth exploring in its own right, it also has important implications for well-being and health. Numerous empirical studies across a number of behavioral science and medical disciplines have shown the importance of close interpersonal relationships for health and well-being (Cohen, Gottlieb, and Underwood 2001; Uchino, Cacioppo and Kiecolt-Glaser 1996; Cohen and Wills 1985). For example, more than 130 empirical studies have shown that on a number of well-being indices, married men and women are generally happier and less stressed than unmarried people (Coombs 1991). Personal relationships, including love and friendship, are for most people an essential ingredient of the life they want for themselves, something to value for their own sake as well as for the support they provide during stressful times. However, many people see disability as an obstacle to friendship, romantic love, and rewarding family life. Disability scholars and activists reject this widespread belief, arguing that the obstacles that exist to accessing such relationships are due primarily to features of the social and physical environment.

In this section, we discuss the perceived barriers to such relationships. Clearly, one’s view about the effect of disability on interpersonal relationships depends on one’s conception of disability and on one’s conception of the relevant interpersonal relationships, such as friendship and love. As is evident from the discussions in the “Friendship” and “Love” entries in this encyclopedia, there is lively debate among philosophers concerning the nature and value of love and friendship.

The term “personal relationship” encompasses relationships of widely varying sorts. We will focus on relationships typically understood as enduring and in some way intimate: between parents and children, siblings, friends, and committed partners. In that respect, our conception of personal relationships is narrower than the broad conception of a relationship that figures in some of the literature on relational egalitarian theories of justice (see, for example, Anderson 2010; though for a principle of relational egalitarianism that is derived from consideration of what spouses owe one another, see Scheffler 2014). The close relationships we have in mind—whether of friendship, partnership, or family—involve some degree of mutual regard, personal disclosure, and particularized knowledge. They also involve material and emotional mutuality, but need not involve equal exchanges between the parties.

Philosophers have often treated equality of some kind as a prerequisite of friendship (see SEP entry on friendship ). In the Nicomachean Ethics , Aristotle distinguished among three kinds of friendship: friendships of pleasure, of utility, and of virtue. The last, the highest or truest form, required similarity of character. Philosophers since Aristotle have rejected some of his prerequisites for friendship, such as equality of social or economic status, but they have shared his view that friendship must be a relationship among equals. The debate has largely focused on the kind of equality that is required. Thus, Aristotle denied that parents and their children could ever be true friends, since the inequality between them could never be overcome no matter how much the child does for his parents. This position is rejected by English (1979) and Kristjansson (2006). Generally, contemporary accounts of friendship place less emphasis on equality or similarity of specific traits and more on equality of respect, investment, and commitment. Given the vast range of differences among close friends in talents, interests, and tangible contributions, it would not seem that disabilities pose any general barrier to intimacy.

Nevertheless, philosophers and bioethicists have tended to look skeptically on the possibility that a person with a disability could offer the mutuality and equality required for a satisfying relationship with a nondisabled friend, romantic partner, or family member. Even in those relationships where unequal contributions and asymmetric dependence are the norm, as with parents and their children, a child’s disability has been seen as an obstacle to a desirable and rewarding relationship. The disability is perceived as creating an uncomfortable degree of inequality and dissimilarity; parents have difficulty picturing the child growing into a productive adult and parent, fulfilling some of the goals people have for undertaking childrearing (Ruddick 1998). Additionally, the child’s disability has been viewed as imposing burdens on parents that differ from and greatly exceed those posed by raising children who do not have disabilities (Botkin 1995). Moreover, the child’s disability is presumed to extend the duration of parental care (Botkin 1995; Kittay 1999; Lindemann and Nelson 2008). Similarly, when the bioethics literature considers people with disabilities as parents, it is largely to assess whether it will be harmful for children to be raised by disabled parents (Coleman 2002; Robertson 2004); or whether adult children will have to give up their other life projects to care for their newly-disabled parents (Callahan 1988).

In this literature, relationships involving disabled people are chiefly viewed from the perspective of those without disabilities. Whether the topic is end-of-life decision making (Hardwig 2000), treatment decisions for low birth weight, premature or otherwise disabled newborns (Stack 1987), the rehabilitation of persons after traumatic brain injury (Nelson and Frader 2004), or selection for or against disabling traits in embryos or fetuses (Botkin 1995; Ruddick 2000; Green 2008), the focus is on how nondisabled people are affected by a (potential) relationship with someone who has a disability. What is largely missing from these accounts is serious consideration of the perspective of the person with a disability; of how her life will be affected, for good or ill, by the family or friendship relationships in which she is embedded. In addition, little attention is paid to relationships in which all involved parties have disabilities. As Chappell (1994) has noted, writers assume that it is in the interest of people with disabilities to aspire to relationships with nondisabled people, even if it is not is the interest of the latter. It seems clear that if the consequences of personal relationships for the flourishing of persons with disabilities were given the same weight as the consequences for nondisabled persons, it would encourage a deeper and fuller appreciation of the goods of personal relationships.

At the heart of the negative portrayal of disability’s impact on interpersonal relationships is the presumed inequality imposed on the relationship when one participant has a disability but others do not. The type of inequality and its explanation are not always made explicit. Does it result from the (perceived) inability of people with disabilities to participate in activities that are important to some, most, or all friendships? Or does it arise from the (perceived) need on the part of the person with a disability for technological or human assistance to manage typical life tasks? Does it stem from a belief that the person with a disability does not possess the social or psychological resources to prove a stimulating and rewarding friend?

The influence of a dichotomous conception of disability, that is, of a conception of disability as a personal attribute one either has or lacks, is evident even in the way questions about disability and personal relationships are framed. In asking questions like “Are relationships between disabled and nondisabled people necessarily unequal?” we tend to assume that disability is a categorical characteristic: that there is a distinct subset of the population that is disabled and everyone else is nondisabled. If, instead, we adopted the human variation model of disability (see SEP entry on disability: definitions, models, experience ), we could reframe such questions. That model conceives of an impairment as an arbitrary range on the continuum of variation for a human attribute. Moreover, the model sees disability as an interaction between atypical functioning or embodiment and an unaccommodating environment. Consequently, it emphasizes that most people are “disabled” in some particular physical or social context, insofar as they have some atypical characteristic which fits poorly in that context. The model also suggests that a disability, like an impairment, ought to be considered as a graduated characteristic: just as there are degrees of functioning, there are degrees of fit between functioning-embodiment and social environment.

On this view, the question “Are relationships between disabled and nondisabled people problematically unequal?” would be better reformulated as

Is there a positive correlation between the degree to which the parties to a relationship differ in overall level of disability, on the one hand, and the degree of problematic interpersonal inequality, on the other?

Although this is largely an empirical question and cannot be answered by philosophical reflection alone, philosophy can clarify the concepts that figure in the question: what is it to have a disability, what sorts of equality matter in valuable interpersonal relationships, and is there a reason, given what disability is and what sorts of equality matter, to think ex ante that such a correlation would exist?

One reason having or acquiring a physical, intellectual, or emotional disability lessens the chances that relationships will move beyond acquaintanceship is that the disability looms so large in the minds of the nondisabled person (and perhaps the disabled person as well) that it obscures or eclipses other features on which an intimate relationship can be solidly grounded. Most people do not yet see disability as one among many characteristics with respect to which humans can vary. In this way, one aspect of a person comes to dominate the whole, an aspect of stigmatization that elsewhere we have described as “synecdoche” (Asch and Wasserman 2005).

These points apply as well to the relationship between disability and romantic and sexual intimacy. This aspect of romantic leave can amplify the concerns of people already skeptical about the ability of persons with disabilities to contribute to thriving friendships. Many nondisabled people may doubt that people with disabilities can be fulfilling partners in any loving adult relationship. Prominent explanations of love, again based in Aristotle, hold that having loving relationships promotes self-knowledge, insofar as one’s beloved acts as a kind of mirror, reflecting back one’s character (see SEP entries on love and friendship ). Many nondisabled people may find it hard to imagine seeing their reflection in a disabled partner. According to LaFollette (1996), love, at least ideally, brings out the best in the participants. For nondisabled people, it may be hard to see past the impairment to imagine that a partner with a disability can bring out their best, be similar enough to understand them, enhance their self-worth, or meet their deepest needs.

Disability creates a number of challenges to forging intimate physical and emotional relationships. People with sensory-motor impairments who were disabled beginning in early life often report that they were socially segregated from other children, either directly because they were tracked into different classes or different schools, or indirectly because other students avoided them. Consequently, many disabled children have not been socialized about sex in the way other children have been: even playground misinformation can play a role in developing and affirming a sense of nascent sexual identity in able-bodied children, yet disabled children are often excluded from this process. To make matters worse, many disabled children do not receive sex education until a much later age than their able-bodied peers (if at all), a reflection of the pervasive stereotype that disabled people are infantile and asexual (Shakespeare 1996).

These challenges persist into adulthood. When disabled people form intimate relationships with other adults, cultural stereotypes and prejudices continue to exact a high cost. Disabled people are often expected to be “with their own kind”, and if they do form intimate relationships with unimpaired people, they must confront patronizing assumptions about the “real” reasons for the relationship: dependency, pity, etc.. When disabled people form intimate relationships with one another, they must overcome psychological barriers to intimacy that result from society’s views about what an appropriate partner would be or what acceptable sexual activity is. Or they must battle family opposition to being with a partner whose similar or different disability prevents that partner from assuming the role of “caregiver” or personal assistant. Emens (2009) shows how institutional practices, along with physical and communication barriers, perpetuate and reinforce prevailing views that people with disabilities will be incapable of participating in sexual and partner relationships.

For various reasons, people with intellectual disabilities have been thought incapable of understanding and appreciating the value of romantic, sexual, or partner relationships. But as first-person narratives attest, disabled people have grown quite adept at navigating and even overcoming these challenges (Shakespeare 1996). Narratives and research demonstrate that even people with developmental disabilities or dementia can and often do consent to mutual, sustained sexual relations (Kaeser 1992). This is not to deny, obviously, that some disabled people lack the cognitive abilities necessary to genuinely consent to sex.

The assumption that people with disabilities will not be able to enter into intimate relationships, or will impose onerous burdens on their intimates, may play a significant role in the routinization of prenatal testing and abortion for disability. The reluctance of many parents to have a disabled child often rests on an exaggerated view of the physical and emotional demands of raising such children, or on a failure to appreciate the capacities of such children to form rewarding parent-child relationships. The latter is likely to play a major role in the strength of the desire to avoid having a child with a serious cognitive impairment. Indeed, surveys show that prospective parents are far more reluctant to have a child with a cognitive or affective impairment than a sensory or motor impairment (Wertz 1998).

This reluctance may also rest to a great extent on the overwhelming salience of the impairment in a setting where little else can be known about the future child. That salience reinforces the already-powerful tendency to see only the stigmatized trait. Botkin may express the dominant view among prospective parents in arguing that the burden of raising a child with a disability should be treated as equivalent to the burden of raising an unwanted child (Botkin 1995: 32–39). Ferguson argues that the findings from research and from parent narratives in the past thirty years contradict such assertions and demonstrate that families with a child who has a disability look much like other families in terms of satisfaction, stress, and system functioning (Ferguson 2001: 373–95). Other research suggests that raising children with severe cognitive and other disabilities has greater stresses but similar rewards (Aschbrenner, et al. 2010; Blacher and Baker 2007; Gerstein et al. 2009).

Prospective parents with disabilities are less likely to be encumbered by these stereotypes about disabled children, but they may believe that their disabilities have been sufficiently difficult for them that they do not want to pass them on to their children. Moreover, even if their impairment is not genetic and they are likely to become the biological parent of a child without a disability, they must struggle with deeply-rooted skepticism about their own ability to parent disabled or nondisabled children. If one of the most pervasive assumptions about disability is its association with a need for help or “care” from others, the person with a disability may think herself incapable of doing so for others.

The prospect of parenting by people with disabilities provides an opportunity to consider the question of which components of customary parent-child relationships are essential to good parenting (Blustein 1982; Ruddick 1998; O’Neill 2002). Parents with disabilities, particularly cognitive disabilities, are often regarded as unfit to meet the “special needs” of disabled children, and incapable of serving as mentors and role models for nondisabled children. Although some judicial decisions, empirical reports, and personal narratives recognize that many people with physical, sensory, affective, and cognitive impairments can effectively raise children alone or with some assistance, daily life, social service agencies, and attitudes of professionals and the public still thwart people with disabilities in their parenting goals (Collings and Llewellyn 2012; Picciuto 2015). However, social attitudes are gradually changing as examples of successful parenting by people with disabilities proliferate (Mutcherson 2008).

Disability theorists and activists reject the assumption that disabilities pose unique difficulties for personal relationships on the grounds that this assumption reflects an overly narrow view of the mutuality required in an intimate relationship. That said, not all persons with and without disabilities have the same views about possibility of combining intimacy with disability-specific personal assistance. To accommodate these differences, some theorists and activists have argued for options that separate instrumental assistance from close relationships. These options involve providing by paid staff for personal assistance in cases where this helps to preserve the mutuality, sharing, and interdependence of friendships, partner relations, and family life (Litvak et al. 1987; Asch 1993; Ratzka 2004). There is much to be said in favor of making third-party assistance available. The lack of education and training of family members in meeting a person’s disability-related needs, the societal treatment of these needs as different from and more shameful than other needs, and the scarcity and inaccessibility of other supportive services for meeting these needs, can indeed place enormous strain on intimate relationships between nondisabled and disabled persons. Further, the constant reliance upon intimates for assistance with travel, communication, or preparation for work or school may thwart the desires of persons with disabilities to select what they wear, when they come and go, or with whom they associate in their free time. The idea of an entitlement to state-subsidized personal assistance has been developed on a policy level by Litvak, Heumann, and Zukas (1987), Adolf Ratzka (2004), and Americans Disabled For Attendant Programs Today (ADAPT).

It might be thought that the argument for state-subsidized personal assistance undermines the claim that disability does not pose any general barriers to intimacy. Those arguing that the state should subsidize personal assistance for people with disabilities might seem to share the assumption of Callahan (1988) and Wertz and Fletcher (1993) that disability-related needs differ in kind as well as in degree from other material and emotional needs for which state-subsidized assistance is not defended.

Disability advocates would reject this conclusion for at least two reasons. First, it is the stigmatization of disability-related needs, more than the actual cost of meeting them, which serves as a barrier to intimacy. The stigmatization of disability-related needs creates an aversion to meeting those needs and a tendency to exaggerate the costs of doing so. There is an inclination to see meeting those needs as falling outside the scope of an intimate relationship, when meeting relevantly similar needs of a nondisabled relative are seen as part and parcel of intimate relating. By subsidizing personal assistance, the state helps to overcome the exclusionary effects of deeply entrenched social attitudes that pose a barrier to intimacy. If these attitudes change so that the dominant culture does not find it shameful to have disability-specific needs and distasteful to meet them, there might well be less need for personal assistance programs. The remaining need for personal assistance would not sharply distinguish persons with disabilities from friends and intimates who also call upon each other for various forms of assistance.

Second, the fact that some people with disabilities require more assistance than most nondisabled people to achieve their life goals does not mean that disabilities must pose a barrier to intimacy. Intimate relationships often impose special demands on participants unrelated to disability. An individual with expensive projects or commitments may cost significantly more to befriend or marry, but unless those projects and commitments are extravagant or all-consuming, we would not see them as a general barrier to intimacy. Likewise, even in an Internet age, it may be more costly to maintain friendships with people who live in remote areas. Yet we tend to see those costs as incidental to the relationships we form, even if they limit them in ways we may regret (Amundson 2005).

A state-subsidized personal assistance response to disability-related needs is not welcomed by all disability theorists and activists. Wendell (1989, 1996) sees people with disabilities, in their dependence, as having lessons to teach nondisabled people about human interdependence. Similarly, Eva Kittay has argued for the importance of kinship caregiving. Kittay stresses the importance of a loving and “sustaining” relationship between the caregiver and the care-recipient, which may be absent when care is professionally outsourced. Moreover, family caregivers are more likely to maintain trusting and long-lasting relationships, as opposed to professional caregivers, who may come and go. Furthermore, Kittay stresses the significance of including disabled people in familial and cultural activities rather than relegating them to paid caregivers, although it is not clear why having a paid assistant is inimical to participating in familial and communal activities (Kittay 2003). (See also Longmore 1995 and Levine 2004.).

These arguments about the value of kinship caregiving do not undermine the case for making professional caregiving relationships a dignified and economically viable option. There are many families ill-equipped or poorly disposed to adopt that option. But there are also many circumstances in which the differentiation of personal assistant from parent, spouse, or friend will give the person with a disability the freedom and privacy that nondisabled people take for granted. In circumstances where kinship assistance would strain rather than enhance intimate relationships between family members, it seems clear that third-party assistance should at least be made available as an option, even if it is not encouraged across-the-board.

Subsidizing third-party assistance is a means by which the state can help to create the conditions for the flourishing of positive relationships. The provision of paid third-party assistance is not intended to force the separation of instrumental help from close relationships, but to give friends and family members the freedom to decide how much of such assistance they want to incorporate into their relationships. Friends and family members may be entirely comfortable meeting someone’s disability-specific needs, just as they are prepared to meet other needs of the people with whom they have intimate relationships (Asch 1993). In other cases, and with respect to other needs, they may not. Close relationships are not all of a piece, and persons with disabilities, their friends, family members, and lovers should be able to determine for themselves what kind of relationship they will have and what role there is in it for third-party assistance.

Having separately discussed well-being, health, and personal relationship, the Entry concludes by considering the links among these three domains, as they pertain to disability.

On most plausible accounts of well-being, health and personal relationships are either instrumentally conducive to well-being or partially constitutive of it. An account of well-being which entailed that health and personal relationships were not important means to or constituents of well-being would be prima facie implausible. Consequently, an account of health entailing that persons with disabilities are necessarily unhealthy, or an account of personal relationships entailing that persons with disabilities cannot enjoy many of the goods of those relationships, will also have the implication that persons with disabilities cannot attain the same level of well-being as able-bodied persons absent compensating capacities or achievements in other domains.

Many laypersons, policymakers, and philosophers implicitly or explicitly adopt theories of health and personal relationships with this implication. But there are plausible accounts of health and personal relationships which do not entail that disability is inimical to well-being. And on most plausible accounts of well-being, disability need not present a formidable barrier to living a good life. This is so on appropriately pluralistic, flexible and broadly-framed objective-list accounts as well as on subjective accounts. A blind or deaf person cannot exercise all five senses. But there are plausible arguments for the conclusion that they can have lives with rich aesthetic experience, pleasure, and joy.

We suggest that the difficulty in appreciating that people with disabilities may have lives as good as those of people without disabilities, objectively as well as subjectively, may arise in part from a failure of imagination by nondisabled people. A body of empirical research indicates that people without disabilities rate the subjective well-being of people with disabilities far lower than they rate it themselves. (Albrecht and Devlieger 1999; Gill 2000; Goering 2008). If all persons enjoy a defeasible presumption of epistemic authority with respect to the quality of their experiences, this divergence suggests that the widely shared assumption that disabilities reduce quality of life should be regarded as controversial, not self-evident. Although we have no empirical research to support us, we suspect the same is true for the divergent assessments of the prospects for objective well-being of people with disabilities. Non-disabled people may have greater difficulty imagining how people with disabilities can enjoy or develop the capabilities for the various constituents of objective well-being, particularly those concerning health and personal relationships.

This highlights a broader point connecting all three domains, as well as the relationship between philosophy and disability more generally. Most philosophical discussions of disability have implicitly assumed the perspective of persons who do not have a disability. They have asked whether other people, the people with disabilities, have lower levels of well-being; whether other people, the people with disabilities, are less healthy; whether other people, the people with disabilities, will pose a comparatively higher burden as friends or intimates. In much recent work in political philosophy, disability has figured most prominently as a paradigm example of bad luck, and the question is whether and to what extent we the able-bodied should compensate disabled others for their misfortune (see SEP entry on disability and justice ). By implicitly adopting the perspective of nondisabled persons, from which persons with disabilities appear only in the third-person, much mainstream work in philosophy has failed to take seriously the perspectives of persons with disabilities—even when those perspectives are directly relevant to the conceptual question under discussion: what is the nature of well-being, or friendship, or health? We hope that this entry can be a point of departure for a discussion of these concepts that takes into account a wider range of relevant considered judgments, intuitions, and perspectives.

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Essay on Disability

Students are often asked to write an essay on Disability in their schools and colleges. And if you’re also looking for the same, we have created 100-word, 250-word, and 500-word essays on the topic.

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100 Words Essay on Disability

Understanding disability.

Disability means having a condition that makes it tough to do certain things. Some people are born with disabilities, while others get them from accidents or illnesses. Disabilities can be seen, like when someone uses a wheelchair, or unseen, like trouble with learning or hearing.

Types of Disabilities

There are many kinds of disabilities. Physical ones affect the body, like trouble walking. Sensory disabilities impact senses, like being blind. Mental health and learning disabilities affect the mind, making learning or feeling good harder.

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People with disabilities can do many things. They go to school, work, and play sports. Sometimes they need tools or help to do these things. It’s important to treat everyone with respect and kindness, no matter what.

Support and Rights

Laws protect people with disabilities, giving them the same chances as others. Ramps, special software, and support in school are examples. These help make sure that everyone, regardless of ability, can join in all parts of life.

250 Words Essay on Disability

Disability is when a person has a condition that makes it more challenging for them to do certain things. This can be because of problems with their body or their mind. Just like everyone is different in their own way, disabilities are different too. Some people are born with disabilities, while others may get them because of an accident or illness.

There are many types of disabilities. Some people might have trouble seeing, hearing, or walking. Others might find it hard to learn or remember things. It’s important to know that just because someone has a disability, it doesn’t mean they can’t live a full and happy life. They can still play, learn, and work; they might just do these things in a different way.

People with disabilities use tools and help from others to make their lives easier. For example, someone who can’t see well might use a cane or a guide dog to walk around. There are also special computers and programs that help people with different kinds of disabilities to study or do jobs.

Being Kind and Respectful

It’s very important to be kind and respectful to everyone, including people with disabilities. They should be treated just like anyone else. You can be a good friend by understanding their needs and helping them when they ask for it. Remember, having a disability doesn’t stop someone from being a great friend, artist, scientist, or anything else they want to be!

500 Words Essay on Disability

When we talk about disability, we mean a condition that makes it hard for a person to do certain things. This could be because their body or mind works differently from what most people consider usual. Disabilities can be seen, like someone in a wheelchair, or unseen, like someone who has trouble learning.

Disabilities come in many forms. Some people are born with them, while others might get a disability because of an accident or illness. Physical disabilities affect the body, making it tough to walk, see, hear, or move around. Mental disabilities can make learning, communicating, or handling emotions challenging.

Life with a Disability

Living with a disability means facing challenges that others might not think about. Simple things like climbing stairs, reading a book, or remembering directions can be hard. But it’s important to know that having a disability doesn’t stop someone from living a full and happy life. People with disabilities go to school, work, play sports, and enjoy time with friends and family just like anyone else.

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To help people with disabilities, we need to make places more accessible. This means creating ramps for wheelchairs, having books in Braille for those who can’t see, and using sign language for those who can’t hear. Support also comes from friends, family, and helpers who give their time and love to make sure everyone can join in.

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Sometimes, people don’t understand what it’s like to have a disability, and they might act in a way that is not kind. It’s very important to treat everyone with respect, no matter how they look or what they can or can’t do. By learning about disabilities, we can be better friends and help make sure everyone feels included.

Technology and Disabilities

Technology has done a lot to help people with disabilities. There are computers that speak for those who can’t talk, wheelchairs that can climb stairs, and apps that help people who have trouble with learning. These tools open up a world of possibilities and help break down barriers.

The Power of Positivity

Having a disability might make some things tougher, but it can also teach us about strength and courage. Many people with disabilities have done amazing things and have shown that it’s not the disability that defines them, but their talents and personality. With a positive attitude, anyone can overcome challenges and reach their goals.

Disability is part of the human experience, and it touches all of us in one way or another. By learning about it and creating a world that is good for everyone, we build a kinder, more understanding society. Remember, it’s not our differences that matter, but how we treat each other. With care and support, we can all help make life better for people living with disabilities.

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Disability Studies: Foundations & Key Concepts

This non-exhaustive reading list highlights some of the key debates and conceptual shifts in disability studies.

Disability studies emerged out of the disability civil rights movement in the late twentieth century. Early scholarship distinguishes the medical model of disability, which locates physical and mental impairments in individual bodies, from the social model, which understands the world as disabling people. The social model names both architectural and attitudinal barriers as the cause of disablement. Over the last few decades, the field has expanded to include individuals with a wide range of disabilities—not just physical conditions, but also mental and chronic ones.

This list, far from exhaustive, highlights some of the key debates and conceptual shifts in the field.  In addition to showcasing disability studies’ interdisciplinary focus, the list traces the relationship between D.S. and other minority fields of study. At its broadest, disability studies encourages scholars to value disability as a form of cultural difference. As the sources below reveal, ability should not be the default when it comes to human worth.

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Asch, Adrienne. “Recognizing Death while Affirming Life: Can End of Life Reform Uphold a Disabled Person’s Interest in Continued Life?” The Hastings Center Report , 2005

Bioethics scholar Adrienne Asch is one of the first scholars to bring a disability studies approach to bioethics. This essay addresses U.S. policy regarding decisions for end-of-life treatment and, more broadly, it critiques discourse surrounding “quality of life.” Asch attacks the slogan “better off dead than disabled” by showing how disability does not necessarily diminish one’s life. Instead, she argues, healthcare practitioners should focus on forms of care that give disabled people independence. She also offers pragmatic suggestions for how caretakers can affirm the humanity of patients receiving end-of-life treatment.

Baynton, Douglas. “Slaves, Immigrants, and Suffragists: The Uses of Disability in Citizenship Debates.” PMLA , 2005

Douglas Baynton’s groundbreaking essay foregrounds disability in accounts of American history. He assesses three U.S. debates regarding citizenship: the civil rights movement, women’s suffrage, and immigration legislation. This essay considers how disability has been used as a justification for the oppression of marginalized populations. For example, slaves were said to become “crazy” if they were granted freedom. Women were often described as mentally incapable of receiving an education. And immigrants have been cast as disabled due to racial difference. Baynton explores how attending to disability in its own right (rather than as a symptom of misogyny or racism) enables an intersectional analysis.

Brueggemann, Brenda Jo, Rosemarie Garland-Thomson, Georgina Kleege. “What Her Body Taught (Or, Teaching about and with a Disability): A Conversation.” Feminist Studies , 2005

Written from the perspective of three female scholars with disabilities, this essay is one of the first pieces of scholarship to address the presence of disabled faculty in the classroom. Brueggemann, Garland-Thomson, and Kleege explore the tension between wanting their disabilities to be normalized, but also wanting them to be present in students’ minds. In addition to discussing the difficulty of disclosure in the classroom, they explore how educators might adopt different approaches to teaching to accommodate instructors’ disabilities.

Davis, Lennard. “Crips Strike Back: The Rise of Disability Studies.” American Literary History , 1999

This essay reviews three publications that address disability studies from a humanities-based perspective. While D.S. first emerged in the social sciences, Davis makes a case for the centrality of disability studies scholarship in literary studies. More broadly, he proposes that disability studies should no longer be considered a narrow or specialized field. It’s applicable to us all.

Donaldson, Elizabeth J. “The Corpus of the Madwoman: Toward a Feminist Disability Studies Theory of Embodiment and Mental Illness.” NWSA Journal , 2002

This essay takes up the figure of the madwoman in literature. Adopting a feminist disability studies approach, Donaldson critiques the way feminist scholars read madwomen as merely symptomatic of patriarchal oppression, which discounts the reality of mental disability. She is resistant to framing disability as a metaphor and advocates for readings that consider disability alongside questions of gender.

Erevelles, Nirmala. “Race.” Keywords for Disability Studies (2015)

This short essay gives an overview of the relationship between disability studies and critical race studies. Erevelles shows how disability has been aligned with race. However, analogizing race to disability (or saying, “disability is like race”) eliminates the specificity of both identity categories. She uses special education as an example because it is a site where racial segregation takes place on the premise of disability. By attending to disabled people of color, she argues that we can achieve a more nuanced analysis, which accounts for how social forces like poverty and involuntary institutionalization exacerbate different forms of social marginalization.

Garland-Thomson, Rosemarie. “Feminist Disability Studies.” Signs , 2005

In placing feminist studies and disability studies in conversation, Garland-Thomson argues that both fields work to de-naturalize assumptions about embodiment and social roles. Her essay explores a range of pressing social issues, including selective abortion, caretaking, and reproductive rights.

Ginsburg, Faye and Rayna Rapp. “Disability Worlds.” Annual Review of Anthropology , 2013

Ginsburg and Rapp call for a critical approach to disability in the field of anthropology. Bridging the gap between the medical and anthropological fields, they shift toward understanding impairment as both environmental and cultural. They also consider what ethnography can bring to questions of disability within anthropological study.

Hershey, Laura. “Disabled Women Organize Worldwide.” o ff our backs , 2003

Recounting events from the NGO Forum on Women in China (1995) and the International Leadership Forum for Women with Disabilities in Maryland (1996), disability activist Laura Hershey moves beyond Western definitions of disability to offer a global perspective. In addition to showing how disabled women are doubly discriminated against, Hershey outlines how gender can influence the international movement for disability rights. She also considers how issues like poverty and illiteracy speak to the feminist and disability movements.

James, Jennifer C. and Cynthia Wu. “Editors’ Introduction: Race, Ethnicity, Disability, and Literature: Intersections and Interventions.” MELUS , 2006

This essay brings ethnic studies into conversation with debates regarding disability representation. From the nineteenth-century freakshow to forced sterilization, people of color have been disproportionately disabled, and James and Wu call for an intersectional approach to these complex subjectivities.

Kleege, Georgina. “Blind Rage: An Open Letter to Helen Keller.” Southwest Review , 1998

In this more personal essay, Kleege interrogates Helen Keller’s status as a disability icon. Kleege critiques the way disability has been individualized, refuting both tragic and triumphant representations of impairment. In describing her experience navigating everyday life as a blind woman, Kleege attends to the realities of living in a world not made for disabled people.

Kudlick, Catherine. “Disability History: Why We Need Another ‘Other.’” The American Historical Review , 2003

In this groundbreaking essay, Kudlick moves to situate disability studies in historical scholarship. Reframing disability as valuable, she argues that a renewed attention to bodily and mental impairments can revise our accounts of nearly all events in history—from women’s rights to labor movements. Her essay offers a comprehensive overview of books and articles pertaining to disability history, and, more specifically, deaf history.

Linker, Beth. “On the Borderland of Medical and Disability History: A Survey of Both Fields.” Bulletin of the History of Medicine, 2013

This essay addresses why the history of medicine and disability studies fail to interact. Linker begins by critiquing disability studies’ resistance to medical discourse. She argues that certain disabled people, especially those who are living with chronic conditions, often rely heavily on medical care, which is why the “medical model” should not be so readily dismissed. In turn, while disability history is typically understood as different from medical history, especially in the U.S., Linker argues for a greater need for cross-disciplinary collaboration.

Linton, Simi. “Reassigning Meaning.” Claiming Disability: Knowledge and Identity ,1988

One of the most foundational essays in the field of disability studies, Linton outlines how language has been important to naming disability as a political rather than medical category. She also addresses the problem of “overcoming rhetoric,” which fails to address disabled people’s need for access.

McRuer, Robert. “Crip Eye for the Normate Guy: Queer Theory and the Discipling of Disability Studies.” PMLA , 2005

McRuer is one of the first scholars to assess the relationship between disability and queerness. In this essay, he analyzes how the popular show The Queer Eye for the Straight Guy normalizes the disabled body. While representations of queer life often resist disability, he argues that queer and disability studies share a resistance to normalization, which should be embraced in future scholarship and activism.

Price, Margaret. Mad at School: Rhetorics of Mental Disability and Academic Life . University of Michigan, 2011

Price offers one of the first substantive accounts of mental disability, which has come belatedly to studies of physical disability. She focuses on higher education as a site that stigmatizes mental disability in its focus on rationality, cohesion, and cognitive agility. Her book offers a range of suggestions, many of which are pedagogical, for how mental disability might revitalize academic life.

Siebers, Tobin. “Disability in Theory: From Social Constructionism to the New Realism of the Body.” American Literary History , 2001

Siebers critiques the social model of disability, arguing that it fails to account for the experience of individual bodies. His term “the new realism of the body” calls for an assessment of the bodily effects of disability, which often cannot be altered through environmental transformations alone.

Wendell, Susan. “Unhealthy Disabled: Treating Chronic Illness as Disabilities.” Hypatia , 2001 

This article broadens the definition of disability to include individuals with chronic illnesses.  While people in the disability community often distinguish themselves from people who are ill, not all disabled people, she observes, are healthy. Wendell questions some of the main assumptions in disability activism and scholarship regarding social justice and reform. Dismantling the environmental effects of disablement will not always eliminate a body’s suffering, she argues.

Williamson, Bess. “Access.” Keywords for Disability Studies (2015)

This short essay gives a comprehensive account of the history of access and why it is a key term in D.S. Williamson argues that paying attention to access turns our focus away from the individual, highlighting instead the disabling makeup of the social world. Although access is easy to define, Williamson notes that it is hard to implement in practice because disabled people have conflicting needs.

Editor’s Note: This list has been updated to include publication dates.

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Philosophical Reflections on Disability pp 19–36 Cite as

An Essay on Modeling: The Social Model of Disability

• Anita Silvers 3  
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From its first exposition almost half a century ago, the social model of disability has been aimed at altering both theory and practice, bringing about profound changes in people’s understanding of disability, and in the daily lives of disabled people as well. The social model’s foil, and on some accounts its antithesis, is the medical model of disability. Both models treat disability as a locus of difficulties. While the medical model takes disability to be a problem requiring medical intervention—and as both the prerogative and the responsibility of medical professionals to fix—the social model understands disability as a political problem calling for corrective action by citizen activists who alter other people’s attitudes and reform the practices of the state. These two conceptualizations of disability have been treated as competitors, as if one must prevail over and eradicate the other in thinking about who disabled people are and what should be said and done in regard to them.

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291 Disability Essay Topic Ideas & Examples

🏆 best disability topic ideas & essay examples, 👍 good essay topics on disability, ✅ simple & easy disability essay titles, 💡 most interesting disability topics to write about, 🎓 good research topics about disability, ⭐ interesting topics to write about disability, ❓ research questions about disabilities.

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• Learning Disabilities: Differentiating ADHD and EBD As for the most appropriate setting, it is possible to seat the child near the teacher. It is possible to provide instructions with the help of visual aids.
• The Definition of Disability in Clare’s “Freaks and Queers” These words, in the view of the author, can be used as a disguise or as weapons, and the queer and disabled are capable of taking them from the abusers and use them to build […]
• Intellectual Disability Considerations The best way to help an intellectually disabled individual is through developing interest in learning more about what intellectual disability entails.
• Mental Disabilities: Characteristics and Causes TBIs are caused by an impact of the head against a blunt object or from its penetration by a sharp object; it often results from vehicle accidents. Autism is a developmental disorder that influences the […]
• Learning Disability: What Is Dyslexia? As noted in this paper, many aspects of dyslexia are unknown, and thus further research is needed to address the problem.
• Americans With Disabilities Act (ADA) There is a commission in the US that fights for the rights of people with disabilities when it comes to employment.
• The Quality of the Working Environment for Persons With Disabilities The progressive introduction of new practices more tolerant of the disabled will be carried out at every stage of the work cycle and in every segment of the corporation as a connected infrastructure.
• Provision of Quality Services to People With Disability Provision of quality services to persons with disabilities entails addressing the environmental and attitudinal hurdles created by the community, which impede the autonomy and contribution of persons with disabilities.
• Employees With Disabilities and Their Workplace Behavior In H3, the authors found that employees with disabilities remained loyal and committed to work and were satisfied with their job.
• Child and Youth Care Perspective on Disability The origin of ASD is still unclear for the medical society, but it is assumed that the combination of genetic and environmental factors can cause it.
• Computer-Based Technologies That Assist People With Disabilities The visually impaired To assist the visually impaired to use computers, there are Braille computer keyboards and Braille display to enable them to enter information and read it. Most of these devices are very expensive […]
• Peer Buddy Programs for Students With Disabilities In the essay, the author will provide recommendations with regard to how the peer buddy program can be successfully implemented in schools in the future. The aim is to enhance the success of the peer […]
• Impact of Individuals With Disability Education Act (IDEA) on Education In this case, the judges were of the opinion that the state had the power to choose whether to terminate federal aid offered to facilitate education or, agree on the fact that the Department of […]
• The Ohio Department of Developmental Disabilities Policy The paper outlines the proper policy and procedure of incident reporting and investigation and thus, provides how to become an agent for the Ohio Department of Developmental Disabilities and satisfy individuals receiving services.
• Art: The Illness Narrative of Invisible Disability The aluminum foil is attached to half of the page and represents that the artificial limb is attached to half of the usual limb, such as a lower leg prosthesis.
• People With Disabilities in Society I think that these people are powerful and inspiring, as they prove to the world that it is possible to live life to the fullest with a disability.
• Recreational Activities for People with Disabilities Even the number of customized recreational equipments should be increased so as to enable the people with disabilities to choose from.
• Lawsuits Regarding College Students With Disabilities Abuse is one of the factors considered to have discouraged physically challenged students from pursuing their academic careers.
• Disability Studies as an Academic Discipline By focusing on medical and social constructs of disability, disability studies tend to be multidisciplinary, intersecting the humanities and social sciences.
• Intellectual Disability and Inclusiveness Therefore, the existence of inclusive strategies and the creation of an emotionally friendly environment with participation in group practices is crucial for the happy life of people with ID.
• Children With Disabilities in Education By the end of the experiment the student will demonstrate his ability to understand the information, to discuss it, and to reflect his ideas in writing.
• Epilepsy and Learning Disability Relationship Once nurses identify the symptoms of learning disability in a patient with epilepsy, they refer them to the relevant caregivers for treatment.
• Employment Equity Act: Aboriginals and Disabilities Persons If the Employment Equity Act is applied appropriately, the Act will guarantee that people in the labour force are given the opportunity of the equivalent admission to job openings along with identical management in the […]
• Amundson on Hedonic Psychology, Disability, and Life Quality To facilitate the introduction of a new concept to the field of psychology, Amundson makes a sound decision to specify the essence of the standard view, according to which other definitions and comparisons can be […]
• Learning Disability and Special Educators’ Duties In conclusion, the case study provides the story of Larissa, a young El Salvadorian girl who is disabled because of learning disabilities such as reading and writing.
• Rights of Young Women With Intellectual Disability in the US Since most primary care physicians lack experience and education, the barriers to adequate medical care for adults with intellectual disabilities are being strengthened in sexual health, a sensitive topic for people with and without disabilities. […]
• Autism and Disability Advocacy People with autism can contribute to the diversity of disability culture by expanding understanding of what disability is and how it can be accepted.
• People With Disabilities in the Frida Movie After the accident, her father bought her a canvas that she would use for painting because she loved art and was an artist, helping her cope with her disability.
• Extreme Obesity as a Risk Factor of Respiratory Disability One of the most widespread risk factors that perturb the prevalence of respiratory impairment is extreme obesity. In conclusion, extreme obesity is a dangerous condition that may pose as a threat to the life of […]
• Safety Evacuation for People with Disabilities First, before a disaster occurs, the government should be aware of the number of individuals in the scenario and keep track of them to verify the figures are correct.
• Individuals with Disabilities: Social Misconceptions One of the misconceptions I noticed is the community’s attitudes to people with disability. Community views about individuals with disabilities can also be impacted by features of the person with a disability unrelated to the […]
• Individuals With Disabilities: Prejudice and Discrimination I researched that people with persistent medical or physical disorders, such as cerebral palsy or multiple sclerosis, who have speech, articulation, or communication impairments, for example, are sometimes seen as having an intellectual deficiency. Corey […]
• Special Olympics and Profound Intellectual and Multiple Disabilities Together with partners, the Special Olympics aspires to improve the health outcomes for people with physical and mental disabilities to close the gap with the healthy population who are more advantaged in terms of access […]
• Abortion of a Fetus With Disability It is worth paying attention to the fact that it is precise because of such things that terminations of pregnancy occur so that a person does not come into contact with obvious prejudices still actively […]
• Sports Can Improve the Psychological Well-Being of People with Disability Maresova et al.maintain that viewing the self as a bother and worthless leads to psychosomatic challenges among numerous people with disabilities.
• Ohio Department of Developmental Disabilities’ Staff Training Specifically, the introduction of the assessment modules for the evaluation of the staff members’ compliance with the set requirements will be enacted.
• Developmental Disabilities: Best Practice and Support Family therapy and the creation of support groups seem to be an effective method for children with disabilities and their environment.
• Bronx Developmental Disabilities Council: Organization Assessment During events, council, and committee meetings, the organization provides printed materials with information on disability and the prevention of social distancing of people with disabilities.
• Assistive Technologies for Individuals with Disabilities A rehabilitation consultant will be able to recommend this equipment to people who are acutely worried about the inability to use a computer and the Internet to ensure a comfortable life.
• Addressing Intellectual Disability Disorder Epidemic The process of child growth is different in diverse parts of the world, and depending on the cultural values and language, children can create their specific beliefs and way of living.
• Smart Farms Hiring People with Disabilities Although Smart Farms is a non-profit organization and benefits from donations, the workers play their role in income generation by working on the farms and sales.
• Traumatic Brain Injury: Chronic Illness and Disability The most common cause of a traumatic brain injury is a severe blow to the head or body. He is confined to a wheelchair and is under the care of a full-time caregiver.Mr.
• Instruments to Assess People’s Health, Disability, and Quality of Life In conclusion, it is possible to present the strengths and limitations of the instrument under analysis. Now, it is rational to comment on the primary strengths and limitations of the instrument.
• Americans with Disabilities Act and Nursing Practice Acts such as the Americans with Disabilities Act affect not only the political and legal environment in a country but also the rights and responsibilities of nurses.
• Inequalities in African Women and Disability Studies The problem is that African women are subjected to a higher risk of sexual abuse and illnesses than females of other nationalities.
• Abortion on the Grounds of Disability Removing a fetus from the woman’s womb results in death which is contrary to the morals of the community that is against killing.
• Reasonable Accommodation for the People with Disability A reasonable accommodation in the recruiting process is a change in the nature of the job or the work context that allows a person with a disability to qualify for the position while still having […]
• Life of Individuals Dealing with Disabilities The child’s image hitting the t-ball also showcased a powerful issue, that disabled individuals should be treated similarly to other people and given equal opportunities to give them the chance to perform optimally.
• Partnership for People with Disabilities’ Mission The mission of this organization is to partner with stakeholders both in the intellectual and developmental disability community and other interested groups at Virginia Commonwealth University. The organization was founded in 1985 to better people’s […]
• The Experience of Parents of Children With Disabilities Enhancing support for the mental well-being of parents of children with a disability: developing a resource based on the perspectives of parents and professionals.
• Diabetes Mellitus as Leading Cause of Disability The researchers used data from the Centers for Disease Control and Prevention, where more than 12% of older people in the US live with the condition.
• Disability Programs and Their Funding Issues The public has to promote programs for people with disabilities to address the challenges that they and their families may encounter, and everyone should strive to overcome those challenges as a part of the community.
• Healthcare Disparities in People With Disabilities In addition to health care disparities, such as poor access to care, including preventive one, and dependency, people with disabilities also face higher morbidity and lack of insurance.
• Employment for People With Disabilities Accommodation is also considered to be a restructuring of work and the attraction of other personnel to help in adaptation – as it should have happened with Adele.
• Media and Disability Journal Responses During the study of the literature, it was revealed that in boarding schools, professionals who thoroughly know the features of the disease do not always take care of the child.
• Laws Protecting the Rights of People With Disabilities The aim of this essay is to research the law that protects the rights of people with disabilities in the context of sporting events.
• Disability-Adjusted Life Years in the US and India Therefore, the main contrasts are evident in the ratio of non-communicable and infectious diseases, a greater variety of non-communicable illnesses in the US, and a considerable impact of drugs on the lives of American citizens.
• Disability Discrimination and How to Deal With It The problem of health disparities is a crucial health issue, and it requires the early introduction of strategies that can reduce such inequality.
• Real Magazine Exhibiting Disability Artworks The organization aims to provide their help in selling the paintings and other products to provide the participants with the necessary confidence and support in the realization of the incentive.
• People With Disabilities and Social Work Moreover, there is a tendency towards the rise in the number of such people because of the deterioration of the situation and the growing number of environmental concerns.
• Alternate Assessments for Students With Learning Disabilities The problem is that many school districts experience difficulties with proposing adequate formative and summative assessments for those students who require special attention.
• People with Disabilities’ Problem of Employment Although truck driving can be a stressful job, it is not evident if it is true, and thus, it is important for John to experience the job-related himself and determine whether he can handle it. […]
• Living with Disabilities in the Nondisabled World A variety of laws, initiatives, and regulations are currently implemented to ensure simpler and less costly access to information resources and the functionality of a device.
• Living with Disabilities from an Insider’s Perspective Additionally, Armendariz was able to use a prosthetic arm to assist with her disability which she recalled as being helpful before it led to severe negativity from her peers at the time.
• Disability Hate Crimes in England and Wales An estimated 19% of the population in England and Wales is disabled, and the scale and scope of DHC are grossly underreported since over half of all the incidences go unreported.
• United Arab Emirates Schools: Students With Learning Disabilities The current UAE public school environment does not allow for the provision of the necessary skills due to the lack of a proper teaching strategy.
• Workplace and People With Disabilities The purpose of the research is to make coherent and accurate observations in regards to the usefulness of the given method in improving the overall attitudes of people and organizations toward people with disabilities.
• Interview on Permanent Disability due to an Accidental Injury He also said that forgiving was the best way to free oneself from anger and that it helps in the recovery process. In the beginning, it was difficult for him to accept.
• Career Counseling for People With Disabilities To sufficiently research, the issue of career counseling for individuals with disabilities in the academic press, a list of journals that offer such information was developed.
• Impairment Pain Management and Disability Equality The purpose of the policy is to examine approaches to pain management to ensure disability equality. The first method is a formalized approach to pain management, assessment, and frequent reassessment/ monitoring of the patient’s state.
• Genetic Modification and Implicit Bias Against People With Disabilities There is also a factor of disabilities that are life-threatening to a child, or illnesses that may be able to be fatal within the first few years of life.
• Impact of Social Darwinism on the Perception of Human Disabilities In addition, connecting behavior such as the likeliness of criminality to genetics is incorrect and damaging not only to the individual but to a community and society as a whole.
• The Social Model of Disability From the examples given, it is evident that disability exists because people with impairments are forced to live in a world that is not accessible to them.
• Music Therapy for Children With Learning Disabilities This review includes the evidence supporting music therapy as an effective strategy for promoting auditory, communication, and socio-emotional progression in children with ASD.
• Disability: Coping and Adjustment By applying a combination pf psychodynamic and behavioral theories to the management of the patient’s perception of themselves in a new setting and with the restrictions imposed on them due to their disability.
• History of Disability and Institutionalisation The legacy of oppression for the disabled still exists in many institutions despite the anti-discrimination legislation supporting their participation in the community’s social and economic life.
• Religious Impact on Disability Experience Faith significantly impacts the experience of disability through the salient religious teachings about the meaning and nature of disabilities. However, according to religion, the primary purpose of disability is to enable the society to learn […]
• Healthcare Professionals: Individuals With Developmental Disabilities The presentation provide an overview of relevant health related issues in individuals with developmental disabilities and how it relates to the group of professionals assigned.
• Short-Term Disability Benefits To sum up, when an employee asks for short-term disability leave, if the firm has a contract with an insurance company, the HR manager should begin by contacting their representatives to investigate the situation.
• Relation Between Disability and Health The analysis of descriptive epidemiological and demographical data is an opportunity to learn more about the distribution of disabilities among Americans and the problems related to the lack of education and health promotion programs.
• Impairment and Social Perceptions: Disability However, there is a need to understand each debate’s value in the context of how they affect the general productivity and social developments of people in communities.
• Health Practitioner Practice: Disability Of great importance in this theoretical study is the impact of aging as well as some of the prevalent factors that affect their condition. Vividly, it is worth noting that the level of disability varies […]
• Protection for Persons With Disabilities and Their Service Animals Additionally, it must be trained to give assistance to a person with disability. Service animals that can be selected to assist persons with disability must be either a dog or a miniature horse.
• Intellectual Disability: Autism In their adulthood, and because of the communication issues that most individuals with autism tend to have, they will naturally have difficulty in finding and keeping jobs.
• Death Penalty: Juveniles and Mental Disabilities Consequently, the Eight Amendment should dismiss the death penalty for this category and state laws must implement recommendations of the National Alliance on Mental Illness, the American Psychological Association, and the American Bar Association that […]
• Limitations and Disability in Multiple Sclerosis The data collected contained demographic information such as the gender, age, hypertension and diabetes mellitus history, and the current usage of prescribed medication among the participants.
• Lifelong Disability and United Nations Convention In this report, I will aim to discuss the discursive significance of UNCRPD, to identify the qualitative aspects of how UNCRPD relates to the themes and motifs, contained in the ‘Labor of love’ video, and […]
• National Disability Insurance Scheme Implementation This paper explores the economic, political, sociological, epidemiological public health factors affecting the implementation of the NDIS, and their effect on the health policy in response to the growing needs of the community.
• The Prevalence, Effects and Challenges of Developmental Disabilities While the increase in the number of people with developmental disabilities is attributed to the rising numbers of the aging population, disabilities may arise in childhood and affect the entire lives of people.
• Disability, Handicap and the Environment: Amundsen’s Argument The limitation appears to follow easily from the reality that disabilities entail species-atypical operation together with the fact that species-typical operation is an efficient way of procuring the products present in the environment in which […]
• Community Disability Awareness Program: Elderly Women With Disabilities A measurable outcome in the program’s success will be a decline in the rate of crime related to elderly women with disabilities.
• The Understanding of Needs of People With Learning Disabilities Despite several problems in the overall design of the strategy that can be used to improve the nursing services for PLD, Drozd and Clinch make a very valid point by stressing the significance of a […]
• Addressing the Needs of People With Learning Disabilities As a student aiming at becoming a Nurse Practitioner, I am currently focusing on the exploration of the options for managing the work of the nursing staff, as well as seeking the opportunities for improving […]
• Judicial Conduct and Disability Act Controversy The following paper addresses the Act from the perspective of its constitutionality, the measures applicable to judges caught in misconduct and the terms of judges’ removal, as well as the terms of appointment.
• Tax Eligibility and Disability Payment Another reason is that the injury he suffers occurred during his service in the army as an employee of the state.
• Discrimination Against Customers With Disabilities The role of the law is to regulate such cases and to provide necessary tools for both sides to prove their point of view.
• “Compounding Mental and Cognitive Disability” by Baldry and Dowse A justification of the statement as briefed in the article is that most of the mentally and cognitive disabled individuals have a higher rate of contact with police officers throughout their lives.
• Elderly Women with Disabilities: Problems and Needs Despite the economic crisis, the cost of medical care has also increased due to the rise in the number of lawsuits filed against the physicians of the state.
• Relationship Satisfaction and Psychological Well-Being Among Greek People With Physical Disabilities In the light of this lack of knowledge, the present study attempts to explore the degree of relationship satisfaction in connection with the way handicapped people deal with the challenges of romantic involvement, as well […]
• Understanding of Disability According to the World Health Organization, impairment refers to any problem that affects the functioning of the body or the body structure, limitation in doing an activity refers to the difficulty that results from an […]
• Communication and People With Disabilities The bathrooms were close to the food court; moreover, there were special handle bars which helped to transfer to the commode and, at this, the height of the commode was almost the same as the […]
• Disability Equality of a Disabled Lone Parent Although the officials were initially reluctant owing to her physical condition and the nature of work she was to perform, they allowed her to try.
• Music Therapy as a Related Service for Students With Disabilities From a neuroscientific perspective, how would music intervention improve classroom behaviors and academic outcomes of students with ADHD as a way to inform policy-makers of the importance of music therapy as a related service?
• Importance of the Social Model of Disability For instance, the public perceives people with disabilities as dependents and burdens to their families and communities. Conclusively, the model suggests solutions that rectify the problems witnessed in the modern and disabling world to remove […]
• Professional Practice in Aged Care and Disability The organization has to work with its customers on a partnership level by including them in the planning and assessment of their care.
• The National Disability Insurance Scheme: The Issue of Financing Professionals working within the sphere of Aged Care and Disability Services have to collaborate with many organizations in order to ensure that their clients and patients receive the most benefits from the system.
• National Disability Insurance Scheme The development of NDIS is conditional upon the existence of specific issues related to the provision of healthcare services to disabled people.
• Problem Behaviors in Intellectual Disabilities Community The proposed quality designed study will evaluate the behavior of people with intellectual disabilities over a certain period of time and consequently conclude the primary triggers that influence ID people to demonstrate behavioral issues, including […]
• Sutherland Leisure Center: Professional Practice in Aged Care and Disability Thus, for example, the consideration of Parkinson’s disease by the owner of Sutherland Leisure Center would allow it to benefit from a higher degree of satisfaction of people with this condition.
• Law for People With Disabilities in California The family, the immediate environment of a person with disabilities, is the main link in the system of his or her care, socialization, the satisfaction of needs, support, and career guidance.
• The Resilience Experiences of People With Disabilities The focus of the study was on the participants’ lived experiences, as well as their attitudes towards certain aspects, so the use of interviews as a data collection method is justified.
• Disability and Murder by Caregivers The study of the situation of the family of a person with disabilities in the social structure of society and the possibilities of social mobility is a special section of the disability problem.
• Culturally Aware: Chinese Americans’ Views on Disability Prior to considering the perspectives of the Chinese concerning disability, it is useful to examine the incidence of this health issue among Asian people and some of its peculiarities.
• Intellectual Disability: Causes and Roles Diagnostics needs to be carried out, and a problem in the development of thinking should be revealed with the help of different methods.
• Literature Circles for Students With Learning Disabilities On the other hand, the affected individuals contend that the categorization should be removed to pave the way for the integration of assistances where all needs are attended without classification regardless of the student’s physical […]
• Students With Disabilities: Research Analysis In the process of undertaking this research and practical alignment, there is a misalignment in the inclusion of students with disabilities in the GE class.
• Vocational Expert on Disability Claims While representing a client, an expert has to identify the level of disability of his client and other available jobs in the company.
• School Counselors for Students With Disabilities When the goals are set out, and the professional sphere is chosen, the counselor becomes responsible for the student’s preparation and reception of essential job skills as well as for the communication with the post-school […]
• Adaptive Behavior Skills and Intellectual Disabilities Four assessment tools are important for identifying adaptive behavior and skills: the Adaptive Behavior Scale, the Scale of Independent Behavior, and the Vineland Adaptive Behavior Scale.
• The Specific Needs of Students With Physical Disabilities The research problem that will be the focus of the planned paper relates to the specific needs of students with physical disabilities or behavioral issues in general classrooms.
• Assistive Technology for Students with Disabilities The United Nations Convention on the Rights of people with disabilities proposes a raft of measures to be undertaken by states to promote the wellbeing of individuals with disabilities.
• Job for Individuals With Physical Disabilities For instance, when a new technology is about to be installed, it will be rational for a number of workers based on departments to be selected and taken through how to use the innovation, such […]
• Language Learning Disability: Language Assessment Plan The C&FD subtest will help to evaluate Oscar’s ability to interpret, recall and execute oral commands that contain concepts of functional language.
• An Audit of the Accessibility of the College of the North Atlantic-Qatar to Individuals With Physical Disabilities It should be noted that structural presentation of the paper is considered to be one of the most important elements of the paper because it allows following the logical thought of the research paper.
• Learning Disabilities and Communication Disorders The students are also being taken through research-based and special education programs and the determination of these disorders is done cooperatively between teachers and specialists like psychologists.
• Children With Disabilities: Supporting Student Behavior The comfortable atmosphere will help the children to attend the class and also provide a good way to mingle with the children with disabilities.
• Dyslexia Disorder: Characteristics and Services Primary dyslexia is a kind of dyslexia disorder which is caused by dysfunction of cerebral cortex of the brain and the condition is not normally affected by change in growth development.
• Americans With Disabilities and Act Amendments Act to the ADA: The Main Issues and Comparison Moreover, the essence of the major amendments to the ADA is disclosed in the article using comparison and implications of those changes for the public use in the spheres of employment and human resources management […]
• Teaching Character Education to Students With Behavioral and Learning Disabilities The purpose of the study was to determine the effectiveness of character education programs implemented in schools on students with behavioral and learning disabilities.
• Plan of the Kickball Game That Involves the Students With the Disabilities While simulating the situation where one is in charge of the PE class, one needs to remember that disability is never inability, thus the students with the disabilities can participate in any games as well […]
• American With Disabilities Amendment Act The main intention of the Act is that civilians receiving benefits or services through the measures of local and state governments may not be differentiated on the fundamentals of the individual’s physical disabilities.
• Disability Discrimination Laws: Workers’ Compensation It is seen that The Americans with Disability Act 1990 was not having a sound definition for what constituted disability and thus the protection that could be claimed or rejected against disability is also a […]
• Parenting a Child with a Disability Study Books Used in Class But the majority of families find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges with regards to their child’s illness or disability.
• Genetic Testing Under Americans With Disabilities Act There is nothing surprising in the fact that the genetically tested employees counted the testing as a violation of their human rights, and The Americans with Disabilities Act was adopted in 1990.
• Americans With Disabilities Act for Employers However, in practice, an employer could still legally discriminate against those with disabilities An employer is obligated to make reasonable accommodations for an employee or applicant if they are ‘otherwise qualified’ to perform the responsibilities […]
• Disability Insurance Plans in Canada Disability insurance is the type of insurance that provides you with financial security when you are unable to work and earn an income due to an accident or illness.
• Gerontology: The Aging and Disability Programs The practitioner is in charge of taking care of older adults, and the administrator is involved in greeting and guiding the clients.
• Teaching Language to Students With Severe Disabilities The objective of this study is to find the different approaches that can be used in teaching phonics and the whole language to students with varied severe disabilities.
• Program Improvement: Developmental and Intellectual Disabilities The government has been keen to present specific resources and support systems that can support the educational and career goals of these individuals.
• Daily Living Skills Training for Individuals With Learning Disabilities Teaching individuals with physical and mental disabilities the life skills needed to compensate for their disadvantages are considered to be the key factor to ensuring a relatively safe, functional, and happy life for those individuals.
• Disability as a Social Problem in the UK’s History A brief historical analysis of the European disability policy of the selected period is needed to show what determined and directly influenced the development of the current disability policy in the UK.
• Teaching Adaptive Behavior Skills to Children Suffering From Intellectual Disabilities in the Kingdom of Saudi Arabia This theoretical framework will contribute to the validation of the perspectives used by the teachers to construct their system of beliefs regarding the process of teaching ABS to students with ID.
• Disability Experience Shaped by Society The experience of disability is connected to social perception and the infrastructure that surrounds people with disabilities. Viewing disability as a socially constructed concept provides insight into the attitudes and perceptions of disabled people.
• Life Stages of People with Learning Disabilities In order to proceed with the observation, it is necessary to identify the normal issues likely to be encountered by the representatives of both groups.
• Strategies for Recruiting of Practice for Disability Employment The primary goal of the authors is to discuss the role of HR specialists in the process of “enhancing the employment rate of people with disabilities” and to consider approaches to recruiting, engaging, and retaining […]
• An Employment for Individual With a Disability William’s parents can refer to the Department of Rehabilitation of the State of California in order to acquire assistance with his future independent living and employment support.
• Individuals With Intellectual Disabilities in the Workplace Intellectual disability puts a strain on an individual’s ability to have a social life and communicate with other human beings due to the fact that their capability of adapting is limited to a certain extent.
• Cognitive Disability Resource Sheet The inability of persons with intellectual and developmental disabilities to participate in everyday life limits the reach of health promotion programs, which leads to more health-related issues.
• Lifespan Development and Learning Disabilities in Childhood Parents in this situation would most likely select the authoritative parenting style to manage children because they are left to make their own choices under a guided framework.
• Autism Should Not Be Viewed as a Disability
• Lesly Group of Companies and Disability Issues
• Natural Supports for Individuals With Disabilities
• Ican Bike for Individuals With Disabilities
• Ableism: Bias Against People With Disabilities
• Children With Disabilities and Parental Mistreatment
• School Counselor Job for People With Disabilities
• Americans With Disabilities in Criminal Justice Agencies
• Rights of Parents of Students With Disabilities
• Student With Disability in Saudi Arabia: iPad Usage
• Disability Models, Labels, and Language
• Strategies for Teaching Students With Mild Disabilities
• Learning Disabilities and Memory Disorders
• Students With Mild and Moderate Disabilities
• Teaching Children With Multiple Disabilities
• Constructivism Theory for Adolescents with Disabilities
• Veterans With Disabilities: Integration and Employment
• Intellectual Disabilities and Higher Education
• Students With Intellectual Disabilities and Their Independence
• Independence of Students With Intellectual Disabilities
• School Event Supporting Students With Disabilities
• Intellectual Disabilities and Limitations for Human Life
• Psychological Testing of Intellectual Disabilities
• Young Adult Children With Intellectual Disabilities
• Disability in Medieval and Modern Societies
• Access to Disability Services from Various Aspects
• Effective Teaching of Students with Disabilities
• Parenting Children With Learning Disabilities
• Caregivers’ Perceptions of People With Intellectual Disabilities
• People With Disabilities and Their Employment Issues
• Disability Simulations and Their Limitations
• American Deaf Rights History and Disability Act
• Talent-Oriented Intervention for Learning Disability
• Students With Learning Disabilities and Assessment
• Patients With Learning Disabilities: Quality Care
• Talent-Oriented Therapy: Patients With Learning Disabilities
• Involving Adults With Autism Plus Learning Disability
• Age Bias, Disability, Gay Rights in the Workplace
• Sibling Relationships of Children With Disability
• Grandparents Raising Grandchildren With Disabilities
• People With Disabilities: Local and a Federal Law’ Regulation
• Reading Disability Controversies
• Students With Learning Disabilities: Needs and Problems
• Disability and Diversity in the Workplace
• Students With Disabilities: Characteristics and Strategies
• Instructional Plan in Writing for Learners With Disabilities
• Inclusive Education and the Cultural Representation of Disability
• People with Disabilities: The Systemic Ableism
• Writing Disabilities Management in Children
• Disability Issues in Society
• Developmental Disabilities and Lifelong Learning
• Action Plan for Patrons With Disabilities
• Remediation in Students with Disabilities
• Sexuality with the Disability
• Improving Reading Performance of Students With Learning Disabilities
• Understanding How the Medical and Social Model of Disability Supports People With Disability
• Americans With Disabilities Act
• GM’s Committal to People With Disabilities
• Supporting Students with Speech Impairment
• Physical Disabilities and Assistive Technology
• Special Interest Disability and Personal Interview
• Sensory Disabilities and Age of Onset
• High Incidence Disabilities and Pedagogical Strategies for Learning Disabilities
• Exploring Representations of Difference and Disability. Building Blocks or Barriers?
• What Is the Impact of Disability on Children’s Experiences at School?
• Families With Members Who Experience Disabilities
• Support Inclusion and Effective Practices for Students With Disabilities
• Peer Buddy Program: Students with Disabilities in High School
• An Action Plan for Serving Individuals With Disabilities – Library and Information Science
• Proper Identification of Students With a Learning Disability
• Internal Campaign Planning for Inclusion of Persons With Disabilities
• Human Rights of People With Intellectual Disabilities
• The Individuals with Disability Education Act
• Adolescents with Learning and Behaviour Disabilities: Graduation and Employment Difficulties
• Hiring People with Disability
• The Problem of Reading of Children With Learning Disabilities
• People With Disabilities
• Culturally Responsive Teaching of Students With Disabilities
• Education Reflection on Multicultural Perspective and Disability Classes
• People With Disabilities and Abuse of People With Disabilities and Criminal Justice
• Reading Disability
• Terminology and Etiquette Discussion Regarding Persons With Disabilities
• People With Disabilities and the Hotel Industry
• The American Disability Act, ADA
• Post Education for Adults With Disabilities
• The Right Attitude Towards Disabled People
• Being Obese as a Disabling Disability: Concerning the Obstacles for Challenged People
• Assistive Technology for Kids with Learning Disabilities
• Inclusion for Students With Severe Disabilities
• The Impact of a Fitness Intervention on People with Developmental and Intellectual Disabilities
• Autism and Educational Process
• School Disability Program
• Is It Ethical to Abort Based On Genetic Disability?
• Current Trends and Issues in Educating Students With Disabilities
• General Curriculum for Intellectual and Developmental Disabilities Learners
• US Should Ratify the UN Convention on the Rights of People with Disabilities
• Disability Management Practices in Canada
• Myths and Misperceptions of the Disability
• The Individuals With Disabilities Education Improvement Act
• Defining Disabilities in Modern World
• Preschool Teachers’ Actions for Integrating Children With Disabilities
• What Is a Disability?
• How Has Disability Changed Over Time?
• What Special Treatment Should Students With Learning Disabilities Get?
• Can Civilian Disability Pensions Overcome the Poverty Issue?
• How Does Disability Insurance Differ From Health Insurance?
• What Can We Learn From People With Disabilities?
• Does Disability Insurance Receipt Discourage Work?
• How Can States Help Workers Keep Their Jobs After Injury, Illness, or Disability?
• Does Disability Status Modify the Association Between Psychosocial Job Quality and Mental Health?
• How Many Disability Beneficiaries Forgo Cash Benefits Because of Work?
• Does Parental Disability Matter to Child Education?
• How Does Disability Insurance Reform Change the Consequences of Health Shocks on Income and Employment?
• What Drives Inflows Into Disability?
• How Does the Composition of Disability Insurance Applicants Change Across Business Cycles?
• Does Protecting Older Workers From Discrimination Make It Harder to Get Hired?
• How Large Are the Classification Errors in the Social Security Disability Award Process?
• What Happens When the Definition of Disability Changes?
• How Does Social Constructionism Impact Our View of Disability?
• Does the Pension System’s Income Statement Matter?
• How Do Financial Incentives Induce Disability Insurance Recipients to Return to Work?
• Does Community-Based Rehabilitation Enhance the Multidimensional Well-Being of Deprived Persons With Disabilities?
• Why Are the Disability Rolls Skyrocketing?
• How Can Disability Effect Child Development?
• Are School Feeding Programs Prepared to Be Inclusive of Children With Disabilities?
• Should Children With Disabilities Be Mainstreamed or Not?
• What Makes Special-Education Teachers Special?
• Why Does Our Society Provide Vocational Rehabilitation Services for Persons With Disabilities?
• What Is the Importance of Disability Awareness?
• How Do Disabilities Affect People’s Lives?
• What Are the Five Barriers for Persons With Disabilities?
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Disability Visibility

75 pages • 2 hours read

Disability Visibility: First-Person Stories from the Twenty-first Century

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Essay Topics

Summary and Study Guide

Disability Visibility: First-Person Stories from the Twenty-First Century (2020) is an anthology of 37 nonfiction essays collected by disability rights activist Alice Wong. Each essay concerns a different aspect of what it means to be disabled, and the volume includes writings from people with physical, intellectual, psychiatric, and sensory disabilities. These essays center a broad array of topics, including medical trauma, personal relationships, career success, family dysfunction, art, activism, history, and politics.

Disability Visibility ’s model of disability studies and activism is thoroughly intersectional. Most of the contributing authors are queer, women, and/or people of color. Many of them draw specific attention to how these identities intersect with their disabilities and disabled status. Many are also multiply disabled, which they explore in varying degrees of detail.

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This text is one part of a broader effort called the Disability Visibility Project (DVP). Spearheaded by Wong, DVP is an ongoing multimedia project and digital community dedicated to collecting, preserving, and sharing disability media and culture. This banner includes several other books, a digital archive, a podcast, and a blog. Like DVP, Disability Visibility aims to capture and share a broad range of disabled experiences and perspectives. To make the text widely accessible, it is available in a variety of formats including an audiobook, a braille edition, a plain language summary, and an adaptation for young readers.

This guide references the eBook edition from Vintage Books, published in 2020.

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CONTENT WARNING: This text (and this guide) contains extended discussions and depictions of ableism , medical abuse/malpractice, sexual assault, racism, sexism, classism, antisemitism, islamophobia, anti-queerness, eugenics, Nazism, physical injury, serious illness, and compulsory institutionalization. This book also contains frank discussions and depictions of human bodies, bodily fluids/waste (e.g.: blood, vomit, excrement, urine), sex and sexuality, and physical pain.

In her Introduction , editor Alice Wong introduces her work and the ethos behind this book: “I want to center the wisdom of disabled people […] Collectively, through our stories, our connections, and our actions, disabled people will continue to confront and transform the status quo” (xxii). The anthology comprises 37 nonfiction essays written by people with disabilities.

Harriet McBryde Johnson’s “Unspeakable Conversations” recalls her formal debate with Dr. Peter Singer at Princeton. On a personal level, Johnson finds Singer respectful and pleasant, but she regards his beliefs as genocidal towards disabled people.

“For Ki’tay D. Davidson, Who Loved Us” is a eulogy for disability rights advocate Ki’tay Davidson written by his surviving partner, Talila Lewis. Lewis celebrates Davidson’s identity as a Black, disabled, transgender man.

“If You Can’t Fast, Give” is a reflection by Maysoon Zayid, a Muslim performer with cerebral palsy. She writes about her experiences fasting during Ramadan .

In “There’s a Mathematical Equation that Proves I’m Ugly,” Ariel Henley describes the difficulties of growing up with facial deformities. The essay is built around a seventh-grade art lesson in which she recalls being taught “the golden ratio,” a mathematical formula created to objectively measure facial attractiveness.

“The Erasure of Indigenous People in Chronic Illness” recalls Jen Deerinwater’s experiences with anti-Indigenous racism in medical settings.

June Eric-Udorie’s “When You Are Waiting to Be Healed” charts her journey of self-acceptance. She grew up in a deeply religious family; her family members only acknowledged her disability when praying for God to “heal” it. As a young adult, Eric-Udorie finds a greater level of independence and self-esteem by acknowledging and accepting her disability.

“The Isolation of Being a Deaf Person in Prison” describes Jeremy Woody’s traumatic experiences as a deaf prisoner.

“Common Cyborg” concerns author Jillian Weise’s exploration of cyborg identity. She uses a prosthetic leg and defines cyborgs as disabled people who have technology incorporated into their bodies. She also refutes transhumanism from a disabled perspective .

“I’m Tired of Chasing a Cure” follows Liz Moore as they navigate life with chronic pain and bipolar disorder. Though they identify many things “wrong” with their body, they are tired of seeking relief through medicine and spiritual healing.

“We Can’t Go Back” by Ricardo T. Thornton Sr. is an excerpt from his statement before the US Senate. In it, he recounts his life’s story and argues that the intellectually disabled are fully capable of participating in society.

“Radical Visibility” discusses Sky Cubacub’s clothing brand, Rebirth Garments. Rebirth’s stated mission is to create fashionable and functional clothing for disabled and gender-nonconforming people.

Haben Girma’s “Guide Dogs Don’t Lead People. We Wander as One” centers on the dynamic she shares with her seeing-eye dog Mylo and describes the sensory experience of navigating together.

“Taking Charge of My Story as a Cancer Patient at the Hospital Where I Work” follows Diana Cejas through her residency at a hospital, centering on the fallout from her stroke and cancer diagnosis. She notices a unique social element to working at the hospital where she received treatment and struggles to adjust. As she recovers and progresses in her career, Cejas starts talking about her experiences on her own terms and hears other people’s stories in return.

Sandy Ho’s “Canfei to Canji” contends with her intersecting identities which are often in tension with each other. She is a disabled Asian American and the child of immigrants. Her parents immigrated to the United States in the 1980s, just prior to the rise of disability acceptance in China. As a result, they struggled to parent Sandy while contending with the assumption that disabled people are canfei— “a useless burden.”

“Nurturing Black Disabled Joy” is a reflection on hard-won hope by Keah Brown. Though she was initially a pessimistic, angry, and skeptical person, Brown now embraces the pursuit of joy and “living unapologetically.”

“Last but Not Least” describes Keshia Scott’s exploration of her sexuality. As a blind person, she initially took umbrage at the thought that she might be asexual because she’d been exposed to the ableist myth that all disabled people are either sexless or hypersexual. At the time of writing, she gladly embraces asexuality .

In “Imposter Syndrome and Parenting with a Disability,” Jessica Slice describes the way her disability limits her movement and how that impacts the way she raises her son.

“How to Make a Paper Crane from Rage” uses origami folding as a metaphor for suppressing one’s rage. Elsa Sjunneson writes about losing her father to AIDS, enduring sexual assault, and experiencing ableism.

“Selma Blair Became a Disabled Icon Overnight. Here’s Why We Need More Stories Like Hers” praises actress Selma Blair for her poise and confidence in the public eye after announcing her multiple sclerosis (MS) diagnosis. As a disabled person herself, author Zipporah Arielle is moved by seeing her experiences reflected in mainstream media.

“Why My Novel Is Dedicated to My Disabled Friend Maddy” by A. H. Reaume is an acknowledgment and celebration of disabled collaboration. Reaume and her friend, Maddy Sloan, have each sustained brain injuries that impact their abilities to function on a day-to-day basis. Reaume writes that she physically could not have finished her novel without Sloan’s help.

Rebecca Cokley’s “The Antiabortion Bill You Aren’t Hearing About” is a 2019 response to Texas Senate Bill 1033, which would ban abortion in the case of “severe fetal abnormality.” Though the bill is framed as a defense of disabled lives, Cokley identifies it as an assault on bodily autonomy.

“So. Not. Broken.” is Alice Sheppard’s exploration of what it means to be a dancer who uses a wheelchair.

“How a Blind Astronomer Found a Way to Hear the Stars” is a transcription of Wanda Díaz-Merced’s TED Talk on how her blindness led her to innovate as an astronomer.

“Incontinence Is a Public Health Issue— and We Need to Talk About It” addresses the shame and stigma attached to incontinence. Author Mari Ramsawakh demonstrates why this creates health risks for the people who suffer from it and presents her own experiences with incontinence as a case study.

In “Falling/Burning,” Shoshana Kessock uses comedian Hannah Gatsby’s special Nanette to explain her experience of being an artist with Bipolar II. Kessock refutes the idea that artists must suffer to achieve greatness by sharing her history with medication and productivity.

In “Six Ways of Looking at Crip Time,” Ellen Samuels explores the concept of “crip time,” defined by author Margaret Price as a “flexible approach to normative time frames” (175). Samuels explains the solitude and confusion she feels by creating six different iterations of crip time .

“Lost Cause” follows Reyma McCoy McDeid from early childhood to the time of writing. The essay is structured around moments in which she was told that she or something she was pursuing was a “lost cause.” She also explores the intersection of ableism, sexism, and racism and how it affects her.

“On NYC’s Paratransit, Fighting for Safety, Respect, and Human Dignity” recounts Britney Wilson’s experiences with Access-A-Ride, New York City’s paratransit service. Wilson’s testimony depicts Access-A-Ride as an extremely flawed service that overworks its drivers, wounds its disabled user base’s dignity, wastes their time, and even puts them in danger.

“Gaining Power Through Communication Access” is an excerpt from an interview with Lateef McLeod. The interview was conducted by Alice Wong on the Disability Visibility podcast. McLeod uses augmentative and alternative communication (AAC) as disability aids. He describes his history with AAC and other assistive technologies.

“The Fearless Benjamin Lay” simultaneously celebrates the life of the titular 18th-century abolitionist and little person. Author Eugene Grant, a self-identified dwarf person himself, also challenges Lay’s modern-day obscurity.

“To Survive Climate Catastrophe, Look to Queer and Disabled Folks” urges the reader to use multiply oppressed communities’ knowledge of survival to avert climate disaster.

“Disability Solidarity” is a document undersigned by the members of the Harriet Tubman Collective. It argues that social justice movements and discussions around police violence against Black people are incomplete without active anti-ableist praxis.

“Time’s Up for Me, Too” contains author Karolyn Gehrig’s appraisal of the “Time’s Up” and “Me, Too” movements, especially in Hollywood. As a disabled survivor of sexual assault, Gehrig feels that she and her disabled aunt, Virginia, are excluded from these movements.

“Still Dreaming Wild Disability Justice Dreams at the End of the World” consists of both poetry and prose . It concerns what it means to be disabled in times of widespread crisis and explores what disabled people can provide to social justice movements, including climate justice and protests against ICE concentration camps.

Jamison Hill’s “Love Means Never Having to Say… Anything” reflects on his relationship with his girlfriend, Sharon. Both have myalgic encephalomyelitis. Although they are unable to care for one another as able-bodied partners might, their shared experiences result in an extremely strong bond.

Stacey Milbern’s “On the Ancestral Plane” uses her favorite pair of shoes (“crip socks”) as a framing device to explore her ideological and cultural heritage as a disabled person.

“The Beauty of Spaces Created by and for Disabled People” describes what it feels like to be a disabled person in a majority-disabled audience at a dance recital created and performed by disabled people.

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Home — Essay Samples — Nursing & Health — Other Diseases & Conditions — Disability

Disability Essay Examples

Navigate the complexities and diverse narratives surrounding disability with our extensive collection of disability essay samples. These essays offer a wide range of perspectives on disability, highlighting the challenges, triumphs, and societal implications associated with physical and mental disabilities. Whether you're seeking to deepen your understanding, gather evidence for an argument, or find inspiration for your own disability essay, our collection serves as a valuable resource for any student engaged in this important discourse.

Understanding Disability

Disability encompasses a broad spectrum of conditions that impact individuals' daily lives and abilities. Essays on disability cover various themes, including accessibility, discrimination , legislation, and personal experiences of living with a disability. By exploring these essays, students can gain insights into the lived experiences of individuals with disabilities, the societal barriers they face, and the ongoing efforts towards inclusion and equality. These essays encourage a deeper reflection on how society perceives and accommodates disability, challenging stereotypes and advocating for change.

Highlights from Our Essay Collection

Our disability essay samples address a multitude of topics, ensuring that students can find essays that resonate with their specific area of interest or research focus. From analytical pieces on policy and rights to reflective essays on personal growth and resilience, our collection provides a rich source of information and perspectives. Each essay not only enriches your research but also helps in crafting compelling narratives that bring to light the realities of living with a disability.

Leveraging Our Essays for Your Academic Success

• Idea Generation: Use our essays as a springboard for developing your own unique thesis or research question on disability.
• Research Aid: Employ these essays to identify key issues, trends, and scholarly debates surrounding disability.
• Structural Guide: Analyze the structure and argumentation strategies used in our essays to enhance the organization and persuasiveness of your own writing.
• Citing Sources: Observe how our essays incorporate and cite evidence, providing a model for academic integrity and proper referencing in your work.

The exploration of disability through academic writing is an opportunity to engage with critical issues affecting millions of individuals worldwide. Our collection of disability essay samples is designed to support students in navigating this complex topic, offering a foundation for informed, empathetic, and impactful essays. By delving into our essays, you can contribute to a more inclusive and understanding discourse on disability.

Begin your journey through the multifaceted world of disability by exploring our disability essay samples today. Allow these essays to inspire and guide you as you contribute your voice to the vital conversation on disability and inclusion.

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People with disabilities essay

Disability is one of the most important issues in the contemporary society because stigmatization of people with disabilities contributed to the formation of biases and prejudices which put them into the disadvantageous position compared to people, who did not have problems of disability. Such biases and prejudices contributed to the discrimination of people with disabilities which has been eliminated consistently since the emergence of the Civil Rights movement and introduction of legal changes, such as the Americans with Disabilities Act. Nevertheless, today, the problem of people with disabilities and their discrimination persists because many biases and prejudices are resilient. In this regard, education is particularly vulnerable to the problem of the integration of students with disabilities into the learning process since the modern education system attempts to provide equal opportunities for all students, eliminating the discrimination of students with disabilities. Moreover, the modern education system confronts another problem, the problem of students with excessive abilities, who also face problems with the integration into the classroom environment and development of positive relations with their peers. In such a way, the concept of disability/ability is fulcrum of the contemporary education system in relation to students interaction and elimination of discrimination of students based on abilities/disabilities.

Disability is the complex notion that involves limited opportunities and special needs of people but it does not mean the inferiority of individuals compared to those, who do not have disability. At the same time, ability is a set of skills, knowledge and opportunities to exercise them to perform specific tasks. In such a situation, the risk of the widening gap between individuals with disabilities and those, who do not have them because disability can limit opportunities for individuals to exercise their knowledge, skills and opportunities to the full extent, while those, who do not have disabilities, can take the full advantage of their skills, knowledge and opportunities (Kudlick, 2005). In this regard, the attitude of the social environment to people with disabilities may be crucial for their social standing and opportunities to stand on the equal ground for others.

One of the major challenges people with disabilities face is the challenge in their professional training and development. Disability may limit learning abilities of individuals that prevent them from obtaining the target education and making a successful career. For example, many students with learning disabilities, such as ASD, have difficulties with learning that prevent them from successful learning. In such a situation, they cannot complete their education just like other students do, while the lack of education limits their career opportunities consistently. On the other hand, many researchers (Mansell, 2003) point out that students with disabilities may be as successful as other students, while some students may be even more successful than the average student in certain subjects.

In such a situation, disability may be a substantial obstacle on the way to the professional development of individuals and to their career. On the other hand, often it is not the disability proper but the prejudice of employers that becomes an obstacle on the way of people with disabilities. However, such discrimination tends to disappear due to legal changes, including the introduction of the Americans with Disabilities Act, and current policies aiming at the inclusion of disabled people. In this regard, the discrimination of people with disabilities persists because the power of prejudices and biases is very strong.

At the same time, educators should be aware of special needs of students with disabilities. They should understand that students with disabilities are no different from other students but they have special needs, which educators should match to help them to succeed in their learning and reach a considerable academic progress just like other students do. In fact, students with disabilities are not inferior compared to their peers but they just have special needs. For example, some researchers (Mansell, 2003) admit that even children with serious mental disabilities may be integrated in the learning process successfully on the condition of meeting needs of those students but the problem is that educators are not trained to work with such students. This is why they have difficulties while working with students with disabilities and the integration of students into the learning process and into their peer groups becomes quite difficult.

On the other hand, the modern education focuses on such issues as Knowledge, Enquiry, Empathy, Pluralism, Social Commitment to prevent the problem of discrimination of students with disabilities and to set educators free from their biases and prejudices in relation to students with disabilities. Knowledge is essential for educators to understand needs of students with disabilities. The enquiry is essential for the research of latest advancements in the field of education and exploration of the problem of disability. The empathy is essential for educators to treat students with disabilities, which educators should treat on the equal ground compared to other students. The pluralism is essential for educators to develop the personalized approach to each students, regardless of their abilities and disabilities. The social commitment is essential for educators to treat students with disabilities as an integral part of the school community. The social commitment means that educators should serve to interests of the community and help students with disabilities to integrate into their communities and help communities to accept children with disabilities as equal community members.

At the same time, there is another issue related to abilities, which often remains unnoticed by educators and researchers, which is the issue of excessive abilities. What is meant here is the fact that some students are gifted in certain fields, which make them different from other students and, to a certain extent, put them in the position similar to the position of students with disabilities (Enns, 2013). Excessive abilities lead to the focus of students on the specific subject, which is particularly interesting for them and where they are particularly successful. For example, gifted students may be successful in math that will put them in quite a challenging position. On the one hand, conventional math classes will be boring for them because instructions educators provide for other students may be not even necessary for gifted students, who understand those instructions perfectly and know more than other students, while their math skills may match standards which are normally attributed to higher grades. As a result, such students feel bored with the classroom environment and the learning process because math classes are not interesting for them because they do not contribute to their progress that discourages them from paying much attention to their math class. This trend can be traced in relation to other subjects, which gifted students may be particularly strong in.

On the other hand, gifted students may have difficulties with developing positive interpersonal relations with their peers. In fact, peers may feel the difference of gifted students because of their excessive abilities that may lead to the development of the sense of inferiority-superiority in relationships between the average and gifted students. In addition, gifted students may stay too focused on their favorite subjects or particular interests that also prevent them from developing positive interpersonal relations with other students. In such a way, students with excessive abilities have difficulties with building up positive interpersonal relationships with other students just like students with disabilities.

Thus, the concept of ability/disability turns out to be pivotal for the modern education system and society at large because it influences consistently the development of students and position of individuals with disabilities and excessive abilities. In this regard, disability and excessive ability are two extremes which may raise problems in the personal and professional development of individuals because they face the risk of the development of poor interpersonal relations with their peers. At the same time, both students with disabilities and excessive abilities need the integration into their classroom environment and development of positive interpersonal relationships with their peers.

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Table of contents

Other interesting articles, frequently asked questions about writing an essay, an appeal to the senses: the development of the braille system in nineteenth-century france.

The invention of Braille was a major turning point in the history of disability. The writing system of raised dots used by visually impaired people was developed by Louis Braille in nineteenth-century France. In a society that did not value disabled people in general, blindness was particularly stigmatized, and lack of access to reading and writing was a significant barrier to social participation. The idea of tactile reading was not entirely new, but existing methods based on sighted systems were difficult to learn and use. As the first writing system designed for blind people’s needs, Braille was a groundbreaking new accessibility tool. It not only provided practical benefits, but also helped change the cultural status of blindness. This essay begins by discussing the situation of blind people in nineteenth-century Europe. It then describes the invention of Braille and the gradual process of its acceptance within blind education. Subsequently, it explores the wide-ranging effects of this invention on blind people’s social and cultural lives.

Lack of access to reading and writing put blind people at a serious disadvantage in nineteenth-century society. Text was one of the primary methods through which people engaged with culture, communicated with others, and accessed information; without a well-developed reading system that did not rely on sight, blind people were excluded from social participation (Weygand, 2009). While disabled people in general suffered from discrimination, blindness was widely viewed as the worst disability, and it was commonly believed that blind people were incapable of pursuing a profession or improving themselves through culture (Weygand, 2009). This demonstrates the importance of reading and writing to social status at the time: without access to text, it was considered impossible to fully participate in society. Blind people were excluded from the sighted world, but also entirely dependent on sighted people for information and education.

In France, debates about how to deal with disability led to the adoption of different strategies over time. While people with temporary difficulties were able to access public welfare, the most common response to people with long-term disabilities, such as hearing or vision loss, was to group them together in institutions (Tombs, 1996). At first, a joint institute for the blind and deaf was created, and although the partnership was motivated more by financial considerations than by the well-being of the residents, the institute aimed to help people develop skills valuable to society (Weygand, 2009). Eventually blind institutions were separated from deaf institutions, and the focus shifted towards education of the blind, as was the case for the Royal Institute for Blind Youth, which Louis Braille attended (Jimenez et al, 2009). The growing acknowledgement of the uniqueness of different disabilities led to more targeted education strategies, fostering an environment in which the benefits of a specifically blind education could be more widely recognized.

Several different systems of tactile reading can be seen as forerunners to the method Louis Braille developed, but these systems were all developed based on the sighted system. The Royal Institute for Blind Youth in Paris taught the students to read embossed roman letters, a method created by the school’s founder, Valentin Hauy (Jimenez et al., 2009). Reading this way proved to be a rather arduous task, as the letters were difficult to distinguish by touch. The embossed letter method was based on the reading system of sighted people, with minimal adaptation for those with vision loss. As a result, this method did not gain significant success among blind students.

Louis Braille was bound to be influenced by his school’s founder, but the most influential pre-Braille tactile reading system was Charles Barbier’s night writing. A soldier in Napoleon’s army, Barbier developed a system in 1819 that used 12 dots with a five line musical staff (Kersten, 1997). His intention was to develop a system that would allow the military to communicate at night without the need for light (Herron, 2009). The code developed by Barbier was phonetic (Jimenez et al., 2009); in other words, the code was designed for sighted people and was based on the sounds of words, not on an actual alphabet. Barbier discovered that variants of raised dots within a square were the easiest method of reading by touch (Jimenez et al., 2009). This system proved effective for the transmission of short messages between military personnel, but the symbols were too large for the fingertip, greatly reducing the speed at which a message could be read (Herron, 2009). For this reason, it was unsuitable for daily use and was not widely adopted in the blind community.

Nevertheless, Barbier’s military dot system was more efficient than Hauy’s embossed letters, and it provided the framework within which Louis Braille developed his method. Barbier’s system, with its dashes and dots, could form over 4000 combinations (Jimenez et al., 2009). Compared to the 26 letters of the Latin alphabet, this was an absurdly high number. Braille kept the raised dot form, but developed a more manageable system that would reflect the sighted alphabet. He replaced Barbier’s dashes and dots with just six dots in a rectangular configuration (Jimenez et al., 2009). The result was that the blind population in France had a tactile reading system using dots (like Barbier’s) that was based on the structure of the sighted alphabet (like Hauy’s); crucially, this system was the first developed specifically for the purposes of the blind.

While the Braille system gained immediate popularity with the blind students at the Institute in Paris, it had to gain acceptance among the sighted before its adoption throughout France. This support was necessary because sighted teachers and leaders had ultimate control over the propagation of Braille resources. Many of the teachers at the Royal Institute for Blind Youth resisted learning Braille’s system because they found the tactile method of reading difficult to learn (Bullock & Galst, 2009). This resistance was symptomatic of the prevalent attitude that the blind population had to adapt to the sighted world rather than develop their own tools and methods. Over time, however, with the increasing impetus to make social contribution possible for all, teachers began to appreciate the usefulness of Braille’s system (Bullock & Galst, 2009), realizing that access to reading could help improve the productivity and integration of people with vision loss. It took approximately 30 years, but the French government eventually approved the Braille system, and it was established throughout the country (Bullock & Galst, 2009).

Although Blind people remained marginalized throughout the nineteenth century, the Braille system granted them growing opportunities for social participation. Most obviously, Braille allowed people with vision loss to read the same alphabet used by sighted people (Bullock & Galst, 2009), allowing them to participate in certain cultural experiences previously unavailable to them. Written works, such as books and poetry, had previously been inaccessible to the blind population without the aid of a reader, limiting their autonomy. As books began to be distributed in Braille, this barrier was reduced, enabling people with vision loss to access information autonomously. The closing of the gap between the abilities of blind and the sighted contributed to a gradual shift in blind people’s status, lessening the cultural perception of the blind as essentially different and facilitating greater social integration.

The Braille system also had important cultural effects beyond the sphere of written culture. Its invention later led to the development of a music notation system for the blind, although Louis Braille did not develop this system himself (Jimenez, et al., 2009). This development helped remove a cultural obstacle that had been introduced by the popularization of written musical notation in the early 1500s. While music had previously been an arena in which the blind could participate on equal footing, the transition from memory-based performance to notation-based performance meant that blind musicians were no longer able to compete with sighted musicians (Kersten, 1997). As a result, a tactile musical notation system became necessary for professional equality between blind and sighted musicians (Kersten, 1997).

Braille paved the way for dramatic cultural changes in the way blind people were treated and the opportunities available to them. Louis Braille’s innovation was to reimagine existing reading systems from a blind perspective, and the success of this invention required sighted teachers to adapt to their students’ reality instead of the other way around. In this sense, Braille helped drive broader social changes in the status of blindness. New accessibility tools provide practical advantages to those who need them, but they can also change the perspectives and attitudes of those who do not.

Bullock, J. D., & Galst, J. M. (2009). The Story of Louis Braille. Archives of Ophthalmology , 127(11), 1532. https://​doi.org/10.1001/​archophthalmol.2009.286.

Herron, M. (2009, May 6). Blind visionary. Retrieved from https://​eandt.theiet.org/​content/​articles/2009/05/​blind-visionary/.

Jiménez, J., Olea, J., Torres, J., Alonso, I., Harder, D., & Fischer, K. (2009). Biography of Louis Braille and Invention of the Braille Alphabet. Survey of Ophthalmology , 54(1), 142–149. https://​doi.org/10.1016/​j.survophthal.2008.10.006.

Kersten, F.G. (1997). The history and development of Braille music methodology. The Bulletin of Historical Research in Music Education , 18(2). Retrieved from https://​www.jstor.org/​stable/40214926.

Mellor, C.M. (2006). Louis Braille: A touch of genius . Boston: National Braille Press.

Tombs, R. (1996). France: 1814-1914 . London: Pearson Education Ltd.

Weygand, Z. (2009). The blind in French society from the Middle Ages to the century of Louis Braille . Stanford: Stanford University Press.

If you want to know more about AI tools , college essays , or fallacies make sure to check out some of our other articles with explanations and examples or go directly to our tools!

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In high school, you may have to write many different types of essays to develop your writing skills.

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The structure of an essay is divided into an introduction that presents your topic and thesis statement , a body containing your in-depth analysis and arguments, and a conclusion wrapping up your ideas.

The structure of the body is flexible, but you should always spend some time thinking about how you can organize your essay to best serve your ideas.

Your essay introduction should include three main things, in this order:

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• A thesis statement that presents your main point or argument.

The length of each part depends on the length and complexity of your essay .

A thesis statement is a sentence that sums up the central point of your paper or essay . Everything else you write should relate to this key idea.

A topic sentence is a sentence that expresses the main point of a paragraph . Everything else in the paragraph should relate to the topic sentence.

At college level, you must properly cite your sources in all essays , research papers , and other academic texts (except exams and in-class exercises).

Add a citation whenever you quote , paraphrase , or summarize information or ideas from a source. You should also give full source details in a bibliography or reference list at the end of your text.

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Art Talk with Disability Culture Activist and Community Performance Artist Petra Kuppers

Petra Kuppers, disability culture activist and community performance artist. Photo by Tamara Wade

Speaking with disability culture activist and community performance artist Petra Kuppers is like taking a journey through the senses, which is exactly the kind of experience she cultivates in her artistic practices. Kuppers uses movement, sound, taste, scent, touch, and dream-like visuals to take those she’s inviting on her performances to new places, real and imagined. These methods, as she states on her website, are meant to “engage audiences toward more socially just and enjoyable futures.” In 2023, Kuppers received a Guggenheim Fellowship in recognition of her art and scholarship. 

In addition to being a performance artist, Kuppers is the Anita Gonzalez Collegiate Professor of Performance Studies and Disability Culture at the University of Michigan and a published poet. She has also received a 2022/23 Dance/USA fellowship, the American Society for Theatre Research’s best dance/theatre book award, and the National Women’s Caucus for the Arts’ Award for Arts and Activism.

At the time of this writing, Kuppers is in the South of France as a fellow at the Camargo Foundation, completing an experimental documentary as part of her Crip/Mad Archive Dances project, which she pursued with the resources from her Guggenheim Fellowship. This project tracks the presence of disabled movement in archival dance footage, which Kuppers said can be a challenge due to the stigmas around disability or mental health difference, which archivists or individual’s families often left off the record. Using relational methods and storytelling to find people and records that might fit into this project, Kuppers then responds in the present.  

“I was able to find these beautiful dancerly traces from the Bronx Psychiatric Institution, and then we dance with them in disability community, track them, be in gestural and physical communication with these traces.”

In her distinctive style, Kuppers spoke with the NEA via video conference about the other ways she has engaged community in performance, how that work translates into her poetry, and the power in operating outside of the confines of traditional art spaces and methods. 

NATIONAL ENDOWMENT FOR THE ARTS: How were you first introduced to art and your artistic practice? Where did that begin? 

PETRA KUPPERS:  I've been engaged in art life practice and fields all my life. I grew up in Germany in the countryside, middle of nowhere, in an environment where I had a strong sense of the animacy of the world around me. There were creatures in the rivers, and in the trees, creatures I could be in relation with, dance with. This sense of the aliveness of the world still very much drives how my work happens now. 

I also grew up as someone who lived with pain. From quite early on, I experienced a lot of pain, so I always had to find a way of modulating my interest in the natural world and being outdoors and moving. I did enjoy moving a lot, so I had to find a way to work with, not against, my painful experiences.

I'm a first-generation high school finisher in my immediate family. There was no model, there was nobody out there who was telling me “Well, these are the ways you can go. These are the kind of experiments artists are engaged in.” I had to find them by and by. At university I started experimentation with community performance work. At the University of Cologne, we had a student theater. They were very happy to accommodate obsessive people who wanted to do strange experiments – like me. They gave me a studio to work in for a year on [a performance piece] called Frankenstein , and I did a German stage translation of [the novel] Frankenstein . It was deliciously weird. My team was really varied, too - some of us were squatters, some were architects, some were students, people from all different walks of life. We explored movement together and we engaged in these strange birthing rituals, a slow coming into sensation and world awareness. The movements still look very much like what I'm doing now—movement practices that are not dependent on virtuosity or on an ability to jump high. Instead, they were all about concentration, immersion, relationship to self, other and ground, ritual practices. That's still very much what I do today.

NEA: You say that you're grounded in disability culture method. Can you describe what that means to you and how that manifests in your work?

KUPPERS:  Disability culture methods means, for me, that I'm always trying to come from the place of a question. Who's not in the room, and how can we have more people in the [real or virtual] room? That core question characterizes to me what disability culture is about. I, and the group of people I work with, always think about whoever “we” are as provisional. The kind of ways in which we communicate are provisional. We're not trying to come up with best practices. Instead, we're trying to experiment toward more access for more of us, toward more open futures. For me, that meant that my first art practices beyond these student experiments were Dance with a Difference, where I’ve danced with people who also had significant chronic pain. I danced a lot with people in hospice, in the last months of their lives – hand dances, skin dances, small vibrational work of presence and joy. 

I also worked a lot in mental health self-help groups with people who had really complicated relationships to movement. Many of us had experiences of not being allowed to physically move freely due to incarceration, poverty, age or mobility differences, or were forced on medications that altered movement patterns. Many of us had memory problems and could not memorize movement patterns. For all these reasons, many in our group were not interested in engaging in conventional movement practices, something “recognizable” as dance for audiences, but we were very happy to think about the relationship between inner and outer movement. Dream journeys to experience freedom. Artful ways to calm ourselves and open new pathways to rich sensation. That's, for me, a really important part of the kind of disability culture work that I do. How can I make delicious movement experiences available to people who might be joining me on their bed? How can I use media, like video dance or written language, to enlarge who can dance with us? 

NEA: Community seems to be a big part of what you do—performance as being in community. There's a perception that performance is something that is given to an audience versus bringing them in. Can you talk about your perspective on community and performance?

KUPPERS:  There's many ways I can answer that question. I'm just going to do it through a recent performance experience. Last December, I was in Venice, Italy, as part of the Venice International Performance Art Week. I opened this festival with a performance in a beautiful palazzo by a canal, very inaccessible, but we were still plenty of disabled people there. We just had to have a lot of help in order to get into this thing.

In this performance, I invited people to go on a Crip Drift with me. We touched in with the lagoon, Venice being surrounded by the water. We traveled back in time and felt ourselves standing in the lagoon, our feet in the mud, next to a salt worker, a woman worker who was winnowing salt from the sea by opening up earth dams toward evaporation beds. We went on this dream journey in the darkened room, with red light glowing on us. Volunteers then gave everybody in the audience a sea salt crystal. Next, I invited people into contact, asking them if they were happy to touch someone else’s shoulder, or a hand, or just be in energetic connection. In this way, I wove 120 people into a giant crystal. Then I invited them to put their salt crystal onto their tongue, if they agreed to do so. Of course, salt is quite a mild substance, but it still is a mind-body-spirit-altering substance. You put salt on your tongue, and you know it, right? Your whole body responds, it’s like electricity coursing through. So we created this communal crystal, a lattice, humming with energy, moving through time and space together. We then invited the waters of the lagoon to come in, to dissolve and interact with our salt, and the whole giant room began to move, to vibrate. Swaying, dancing, dreaming, we were all touching each other in some way, either energetically or physically, in this beautiful half-light of the palazzo. 

There’s something about 120 body-mind-spirits dreaming together that creates a different experience in this time-space. That's what I'm so interested in, transformation. No one had the same experience. No one was asked to have the same experience. 

It's less about storytelling. It's less about sharing our life experiences direct. Instead, it's a dance of the community. It's a community of breathing, a community of being enfleshed, a community of being at a particular time and space and touching in with other times in space in order for us to imagine new futures for Venice, new futures of how we live on the edges of lagoons, in climate emergency worlds, in states of dissolve.

Kuppers, next to her wife and collaborator Stephanie Heit, leading community participants in Becoming Fossil, a community dance video about climate emergencies and resiliencies, at the Venice International Performance Art Week. Photo by Edward Smith

NEA: Can you speak about your different artistic practices and how they feed into one another?

KUPPERS:  I just published in February Diver Beneath the Street , my fourth poetry collection, with Wayne State University Press. That is a book that holds onto some of these drifting experiences that I just described in the Venice performance. It holds onto these experiences through the medium of poetry. 

At the heart of Diver Beneath the Street are two serial killer murder cases. True crime meets eco-poetry. I'm looking at the sites in my neighborhood in Ypsilanti and in Ann Arbor where the bodies of young white women were found in 1967 to ‘69, and Detroit sites where older Black women were found in 2019. The 60s cases are the famous Michigan Murders. They are one of the reasons why women are told not to hitchhike, to constrain their travels. The aftermath of these cases tells us how women are supposed to navigate space. As a white queer disabled woman with a scooter whose access to space is complex, I got really interested in this aspect of the national obsession with true crime. 

My wife and collaborator, poet-dancer Stephanie Heit, and I found out that we had bought a house on the street where the murder house was, where the final evidence was found that convicted the 1960s murderer. Then the pandemic happened, and we were in shutdown. I couldn't be in physical community. So instead, like many of us, I engaged a lot with my neighborhood. At that time, and continuing into the present, the pandemic forced all of us to think about those edges of life and death.   

I drifted through the neighborhood with my little scooter, moving, feeling the roots beneath me. When you're on a scooter, on a wheelchair, you really notice the unevenness of the pavements, the way trees strain against the geometry of city planning. Diver Beneath the Street speaks about these experiences of drifting through different neighborhoods. I was drifting past some of the sites where women's bodies were found, and I wrote about decay and renewal. About nematodes, springtails and worms, and about the recycling of life that happens in soils. The resulting collection dives into soil, dives into the Huron River, dives into locations through trance-inducing drifting methods. I do not write about the murders themselves, the women’s suffering, or the murderer. Mine is a very different engagement with racialized, classed, and gendered crime patterns.

In my language engagement with site, I am also holding on to some of what I have learned about Anishinaabemowin, the Ojibwe language. When I live in different countries, I always try to get a sense of what the Indigenous language feels like, what the grammar is like, as that speaks so much about relationships. Even though I don't speak Anishinaabemowin, I was able to take two semesters' worth of instruction in this, and that has left a trace in my relationship to English, and to the land where I now live. Again, the animacy of the world that I spoke to at the beginning, that sense of animacy and relationship is very much part of Anishinaabemowin grammar. While I'm writing in English, I'm trying to have in my ear that there are other languages that are part of this land. English is a settler language that has a very different relationship to trees, to shrubs, to the beetles than Anishinaabemowin has, and being alert to that in the crafting of poetry is something I find very generative.

NEA: You're so wonderful at painting a picture. I have these images coming into my mind as you're talking that are so vibrant. It’s also evident your work operates outside of traditional art spaces and is more experimental. How would you advise or encourage others to seek out working outside of the traditional engagement with art, and engagement with the world, when it can feel very daunting or unaccepted?

KUPPERS:  That is a lovely question and an important one. I would point to art/life again, that connection between art and life, and the satisfaction of being in creative contact with the aliveness of the world. That's, for me, the only way in which there can be hope for us as the human species, for this human species working, living, being in human and more-than-human community on a planet that is becoming less and less habitable for many of us. 

That was a big answer. Let’s make it a small answer. We can use our senses to invent new methods, to find new art forms, to connect ourselves with heritage art forms that might not be part of what is currently happening on the paid stages or in the paid galleries, but that might be part of the traditional frameworks of our lineages. These are such satisfying ways of being part of human cultural production. The majority of people who want to be on the big stages, have their paintings in the big galleries, or have their book be a major bestseller, will likely not achieve that particular goal. Many of us artists, even if we properly train and do everything we're supposed to do, will not get there. It's tiny little bunches of people who get that kind of recognition. That's just how it is in this particular star-based art world system. Getting satisfaction out of the connection between art and life, touching in with spiritual depth and the depth of relationships that you build with others, with yourself and with the world that you're in, that you're part of, that you're serving — these will provide so much more satisfaction than any kind of external marker. Your path will be much more enjoyable if you have other ways of finding recognition and affirmation. It will make for a much more satisfying life, particularly and specifically when there's so much precarity in so many people's lives. Where do you find joy? Start with that.

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Disability Inclusion & Accessibility for Technologists (CSE513) | Research Paper Analysis

Analyze an article using theoretical frameworks drawn from disabilty studies and activism, research paper analysis.

The goal of this homework is to apply a disability model/framework to analyzing a technology or service currently in use in the world. It is also helpful to your peers, it is due 2 days ahead of the lecture on that topic.

Learning Goals / Competencies

This homework may contribute to

• Your competency grade on understanding how to apply Positive Disability Principals to Research
• Your competency grade on Disability Model Analysis
• Your competency grade on Accessible Document Creation
• Other competencies you choose, if relevant

To complete this assignment, you will need to do the following

0. Select an article to focus on.

You should pick one of the research papers assigned as a reading in class, or a paper of your own choosing (requires instructor approval).

1. Select and define three principals/models you will use to analyze it.

You may analyze and critique it using concepts such as

• One of the medical, social or other models of disability as defined in this book chapter
• The concept of a disability dongle as defined in this post
• Up to three of the 10 principles of disability justice
• Something else approved by the instructors

1. Read and summarize article on the topic you have selected.

Read your article and summarize it. Your summary should be about a two paragraphs long. The first paragraph should explain what the paper is about. The second paragraph should answer the following questions:

• Is this project ableist?
• What parts of the work are accessible and what are not (for example, are both design tools, and their outputs accessible?)
• Are people with disabilities engaged in guiding this work? At what stages?
• Is it being used to give control and improve agency for people with disabilities
• Is it addressing the whole community (intersectionality, multiple disabled people, multiply disabled people)

2. Analyze it from the perspective of the principles/models you chose

How did the article you chose address, or fail to address, your there principles?

For each principle

• Name and define it
• Write 1-2 paragraphs (250-500 words) explaining how it relates to the article. Does it highlight a flaw? Or a good aspect?

This should be shared with the class on the discussion board and submitted on Canvas . Your writeup should include

• The article you read
• Your summary of the article
• Your analysis including definitions of the 3 principles/models you picked and your analysis of them
• Remember the academic conduct guidelines and tell us if and how you used generative AI in your assignment, or any other sources of information you used.

NY state budget should raise short-term disability benefits for moms like me

The New York Capitol  in Albany. There’s a real chance to update our short-term disability laws in the budget the legislature will approve in the coming days. Credit: AP/Hans Pennink

I was pregnant and my first thought was: Am I going to have enough money in my bank account to pay my bills when I leave work to recover from the birth of my new child?

In New York State, wage replacement benefits for short-term medical leave, which is what you go on when you have a baby, have been capped at $170 a week since 1989. Back then, a movie cost $3.99, a gallon of gas was $1.06, and a dozen eggs cost a buck.

As an insurance professional living on Long Island who assists New Yorkers in claiming their short-term medical leave benefits, also known as disability benefits, I was fortunate enough to know this ahead of time and we planned ahead. We cut out all the extras, bought diapers early on the deepest discounts we could find, and squirreled away as much savings as possible.

While 30% of short-term medical benefit recipients are women pre- and post-birth, not all of them are aware of the low statutory benefit. Among those who are, not all have the resources to plan ahead and save. Within the remaining 70% are folks who fall ill or are hurt off the job — a sudden occurrence for which no one can plan ahead.

As a result, in my professional role, I hear from New Yorkers making a claim for this insurance that the incredibly low reimbursement cap means they have to choose between putting food on their table or paying their rent. Ultimately, that's a choice between following a doctor’s orders to temporarily leave work and recover your health or going back to work too soon and suffering the consequences. For Black women, this can be a decision between life or death as they’re three times more likely to die while giving birth than white women.

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Yet, in what is perhaps the oddest twist around this issue, if New York’s Paid Family Leave program had existed when I had my children, my husband would have had his wages replaced at a much higher level — currently about $1,100 per week. So here in New York, if you’re sick, injured, or pre- or post-pregnancy, your wages are capped at $170 a week while the person caring for you can have their wages reimbursed at more than six times that rate.

On a personal and professional level, I’ve been following this issue closely as it percolates in Albany. The Equity in Leave Act, introduced in December, would increase the short-term medical leave benefit cap starting in 2026 and phased in over four years, critically balancing the needs of workers, their employers, and the insurance companies that will implement the change.

With Gov. Kathy Hochul including a similar measure in her proposed state budget, and the State Senate and Assembly including versions in their one-house budgets earlier this month, there’s a real chance to get this update to our laws made in the budget the legislature will approve in the coming days.

We can’t wait any longer. The governor and legislature are close. For all of us, they must find a path forward, stay focused on the core issue, and bring short-term medical leave benefits in line with those offered through Paid Family Leave. We must have equity between New York State’s two paid leave programs.

This guest essay reflects the views of Rebecca Hanna, a Long Island mother of two and assistant vice president of product management for ShelterPoint, an insurance company that provides statutory short-term medical/disability coverage.

I'm fed up with playing Disability Top Trumps

As a kid, did you ever play Top Trumps? 

The game was simple. Each deck was based on an element of pop culture and every card had a number of attributes (like age, strength, skills) and you had to compare these values to try to trump and win an opponent’s card.  

The highest value won. Harmless fun, right?

It should be, but I’ve come to realise that being Disabled means life itself feels like a game of Top Trumps – and I’ve never had the highest value. 

As someone born with a genetic condition (Brittle Bones) not only did I come into the world with a diagnosis, I was also given a label, ‘Disabled’ – a word that comes with stereotypes, often mistaken as a life without joy or success. 

A life where ableism has dictated everything from my safety to my ability to live independently. 

I know that I probably always will play second fiddle to my non-Disabled peers. In short, the world isn’t designed for people like me.  

But this discrimination goes much deeper than the simple hierarchy of society that appears to rank non-Disabled people above Disabled people. 

There is, sadly, a hierarchy that is much more taboo and much less discussed – a hierarchy of Disability. 

The idea that some forms of Disabilities are more acceptable, more palatable than others.  

For example, when most people think of Disability, they picture a wheelchair user. 

Therefore, ‘Disability access’ to them starts and ends with a ramp and a lift. 

In fact, wheelchair users like me are estimated to only make up eight percent of the 16million Disabled people in the UK.

So ramps are all well and good, but about the rest of my community? 

The hierarchy is revealed in the stark differences in accessibility depending on location. 

I recently moved out of London to Lancashire and now as a manual and powerchair user I am feeling the impact of those disparities 

In the capital, I could easily travel in an accessible black cab, but up north none of my local cab providers have accessible vehicles. 

One of the main reasons for the Disability hierarchy is that people simply don’t understand how big the Disability community is, and the complex nuances contained within it.   

As Disabled people, our impairments range from physical, limb or facial differences, communication disorders, sensory and cognitive and mental health to name but a few. 

Yet despite the multifaceted nature, too often we are all grouped together under the same umbrella term.  

But we are not the same, and that has real world consequences. 

For example, the Equality Act of 2010 stipulates that some organisations and public buildings must make ‘reasonable adjustments’ for Disabled people. 

But what is reasonable for one person may not work for another.  

And when that isn’t properly acknowledged, society ends up separating people by Disabilities that are considered acceptable.

In my experience, forms of Disability that are seen as more acceptable are those with hidden or invisible conditions, those who can mask and cover their impairment, or those who can work or live independently with little external support. 

These individuals are lauded as ‘inspirational’, while those who are on benefits, need caregivers, are incontinent, or breathing or feeding tubes and ventilators, often feel invisible. 

But discussing this is seen as taboo, in the Disabled and enabled communities. 

Most non-Disabled people don’t like to be told that they are cherry-picking what type of Disabilities they most feel comfortable with, while some Disabled people tend not to recognise that it exists. 

With the latter group, I understand the reluctance, because once we start to actually have honest conversation about needs, we could realise we are doing ourselves a disservice in a world that already doesn’t give us the bare minimum.  

For example, if you are Disabled but your impairment doesn’t impact your ability to walk or talk, the world will likely be far easier for you than other Disabled people. 

Or if you are a manual chair user rather than a powerchair user, public services will be so much easier to navigate. 

I’ve seen it too when I’ve been asked to comment on things like car parking provisions for wheelchair users – it can feel like we are focussing on one section of the diverse Disability community, while ignoring the elephant in the room that an ableist society, and the Disability hierarchy, is stopping people from getting the help they need and deserve. 

Because life isn’t a game of Top Trumps, and no matter what your impairment looks and feels like we should all have access to an equal and equitable world. 

Those of us with ‘acceptable’ Disabilities shouldn’t have to feel guilty that the world as it is benefits us more than other Disabled people. What we should do, however, as Disabled people, is amplify the voices of others in our community. 

The Disability hierarchy will always exist, until more of us up and advocate and create awareness for our community as a whole, not just those who are more palatable.

That way, we can end this game for good. 

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Measuring violence against women with disability: Data availability, methodological issues, and recommendations for good practice

Publication year: 2024.

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Developed as part of the UN Women–WHO Global Joint Programme on Violence Against Women Data, this briefing note focuses on the measurement of violence against women with disability and is one in a series of methodological briefing notes for strengthening the measurement and data collection of violence against particular groups of women or specific aspects of violence against women.

The briefing note is meant for researchers, national statistics offices, and others involved in data collection on violence against women. It provides an overview of the challenges in the availability, measurement, and collection of data on violence against women with disability and outlines recommendations for good practice in measurement, with the aim of strengthening ongoing and future data collection efforts and increasing the availability of such data.

The inclusion of women with disability and the issue of disability within population-based surveys and research on violence against women is necessary for an improved understanding of populations of women at specific risk of violence. This knowledge would also allow more tailored prevention strategies and response/services and programmes to be designed in a way that addresses the specific needs of women with disability.

Additional documents

• Publication (PDF, 490KB)
• Press release: WHO calls for greater attention to violence against women with disabilities and older women
• Video: Ending violence against women with disabilities: Nicole Lee’s story

Publishing entities

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