Disability in an Ableist World

Disability as a constructed concept is not a commonly understood or propagated idea in the mainstream of an ableist society. The average non-disabled person, and frequently even disabled people who’ve had limited or no exposure to disability rights theory or disability culture, does not understand disability beyond something that happens to other people, thereby rendering them tragic objects of pity, scorn, and charity. The general understanding of disability among those whose professions and research lie in the long-established fields of health sciences, rehabilitation sciences, special education, and abnormal psychology is one of a highly and often exclusively medicalized model that understands disability as a pathology in need of treatment, remediation, rehabilitation, and mitigation.

For theorists in the emerging interdisciplinary field of disability studies who are increasingly disabled themselves, there are two foundational understandings of disability—essentialism posits that disability is inherent to the person, whether innate or acquired, while constructivism posits that disability is a social construct and exists only because of sociological, cultural, or political factors. Those who understand disability as a medicalized phenomenon through the lens of an exclusively biological or psychological model of disability are essentialists. Those who insist that there is no such thing as disability or that everyone is disabled in some way are frequently constructivists.

But it cannot be denied that disabled people of any particular disability or condition do have inherent differences from nondisabled people or people with different disabilities. The Autistic brain is different from the non-Autistic brain; those who are Deaf or Blind perceive the world in different ways than those who are hearing or seeing; those who use wheelchairs move differently than those who have no need to use wheelchairs. These differences are real, and the differences are certainly not social constructs. Thus, constructivism does not adequately address the lived and inherent neurological, mental, emotional, and or physical differences that disabled people of any particular group have from those outside that group.

Yet essentialism discounts the roles that lived experiences, attitudinal biases and prejudices, policy and systemic barriers to access, societal ableism, constructs and representation of disability, and hate crimes play in the lives and shared experiences of disabled people across all sectors of society. Essentialism does not address the systemic denial of equal access and opportunity for disabled people in education, housing, community and social life, healthcare, employment, and policymaking. And it certainly fails to consider the consequences of rhetorical and discursive constructions of disability and the disabled experience.

Disability is far more complex and nuanced than either pure essentialism or pure constructivism are capable of adequately conveying. The experience of disability, of being disabled, arises when a person whose neurological, mental, emotional, and or physical differences are atypical and divergent enough from the neurologies and physicalities of the majority so that this person is forced to exist and live in a society and world not constructed to incorporate natural supports and full inclusion and access for people like this person. That is, the experience of disability and being disabled is the result of the interaction of a person’s inherent differences with a society and its attitudes and policies.

On the Massachusetts island of Martha’s Vineyard, it used to be that a significant percentage of the island’s population were deaf until the mid-twentieth century.[i] As a result, nearly all residents learned Sign language from an early age, whether they were Deaf or hearing, and easily switched between signing and speaking without much effort or thought regardless of who was present in the conversation. Today, there are no longer any Deaf people born into the signing tradition living on Martha’s Vineyard, yet elderly hearing islanders continued to communicate in Sign language as late as the 1980’s.[ii]

In communities where everyone or nearly everyone shares the same sensory, physical, cognitive, or emotional experiences, such differences that might in mainstream society be considered to be deficits or disability are not, in fact, disabling at all. While divergent and diverse neurologies and physicalities exist in nature and in isolation of cultural, sociological, historical, and political context, disability does not exist in the absence of a society’s rhetorical and discursive constructions of it that create attitudinal, systemic, and institutionalized barriers to access for those whose neurological and physical variances are atypical.

In order to fully understand disability and the disabled experience, and in order to effectively and meaningfully advocate for attitudinal and systems changes that will lead to equal access and opportunity in a more just and equitable world for disabled people, it is imperative to both examine and challenge the common rhetorical and discursive constructions that posit disabled people as the Other and disability as a pathology, while at the same time suggesting a radically different construction and understanding of disability and the disabled experience as natural and normal parts of the human experience.

Disability has historically been understood in the paradigm of a strange and alien other, as evidenced by the sterilization and eugenics movements targeting the disabled for fear that we might bear disabled children and perpetuate disability. Even today, disabled people who wish to kill themselves are more frequently praised as brave and courageous, and offered the option of euthanasia, while non-disabled people who express the same suicidal ideations are referred to anti-suicide counseling and support.

The lives and humanity of disabled people are routinely questioned not merely by the supposedly objective and well-meaning professionals hailed by the public as experts on disability, but also by the mainstream media. Disabled people face prejudices and attitudinal barriers such as the presumption of incompetence, infantilization, dehumanization, the belief that disabled people are incapable of being sexual beings, paternalism, and the prevailing assumptions that our lives are tragic and that it should be normal for a disabled person to seek to be cured of disability. We are frequently assumed incapable of having opinions or directing our own lives, treated as children even when we are adults, denied access to basic healthcare or education, deprived of accessible or meaningful sex education or even the opportunity to form romantic relationships, treated as though our opinions and ideas have no value, and discussed as though we are not present and cannot be.

Our experiences and lives are usually described through a paradigm of grief, pity, shame, scorn, tragedy, and fear. Our non-disabled parents are taught to mourn their disabled children’s existences and to wish for their children to be cured. Our neighbors are taught to pity us, and our families are taught to be ashamed of us. Youth who believe that their intentions are good are taught that our lives are inherently tragic and that they should be afraid that more children will be born disabled if they do not contribute money to charities working frantically to eradicate disability. If media portrayals and representations of disabled people are to be believed, we are incapable of living full, rich, and meaningful lives, and we remain perpetual children regardless of biological age. Society teaches the non-disabled to fear and pity us, and it teaches us to be ashamed of and hate ourselves.

The concept of disability pride, which has existed for decades in an organized fashion, is revolutionary in its biting response to the paternalism and discursive constructions of disability popular in our society. The idea that people with deformities, people with visible physical disabilities, and people with neurological or mental disabilities are capable not merely of accepting themselves but of publicly proclaiming their pride in being disabled is anathema to a society in which deviation and divergence from neurological and physical typicality is labeled pathology and defect. Yet it is a necessary idea, because we who are disabled must continue to reassert our necessary presence in shattering old rhetorical and discursive constructions of disability while creating and perpetuating new ones.

Without significant changes in societal and individual attitudinal barriers to access, there will be no meaningful systems change, no changes to policies and institutions that create further barriers to equal access and opportunity and full and equal participation in all facets and aspects of life. Few outside the disability community ever consider the consequences of their perceptions and limited understanding of disability, and many whose views are shaped by unsound and dangerous ideas continue to perpetuate ableism without ever having their privilege challenged and examined. Disability exists because we are largely complacent in allowing ourselves and our society to perpetuate a world where disabled people are marginalized and oppressed by attitudinal and systemic barriers to access.

We need the concept of universal design to move from small academic circles and pilot programs in public schools to a foundational principle of all aspects of life, culture, and society. We need to incorporate the language of the Developmental Disabilities Act, which describes disability as a natural part of the human experience, into our fundamental attitudes and everyday practices. We need to stop using language that marginalizes and oppresses and begin to craft rhetorical and discursive constructions of disability that recognize our innate ability to lead full, rich, and meaningful lives as disabled people across the lifespan. We need to stop medicalizing and pathologizing every characteristic belonging to disabled people, and begin to address the problems and deficits in our society and its institutions and policies rather than looking to problem-find in the disabled person. We need to stop presuming incompetence and dehumanizing disabled people, and begin to presume competence and recognizing the innate humanity and equal quality of life of all human beings.

We need to build a world in which all supports are natural supports provided unquestioningly, without the feeling of legal or contractual obligation, but because of a sense of human dignity and decency, and where those supports are not viewed as accommodations for a standard system but natural and normal facets of a universally designed system. We need to educate young students, young researchers, young clinicians, young educators, and young service providers about the diverse and rich history of disability cultures and communities in the context of a disability rights activist movement and a disability studies interdisciplinary scholarship, and we need to encourage and support young disabled people to empower themselves and their peers to demand equal access and opportunity and full and equal participation and inclusion. We need to educate our children and youth about disability as diversity, and we need to incorporate our history into mainstream history.

Ultimately, we need to challenge the constructions and institutions that continue to perpetuate ableism across all facets of society, and we need to promote this radical notion that disability is natural and normal—not something to be feared or pitied, but something to be welcomed and proudly proclaimed.

---

[i] Groce, N. E. (1985). Everyone here spoke sign language: Hereditary deafness on Martha's Vineyard. Cambridge, MA: Harvard University Press.

[ii] Sacks, O. (1989). Seeing voices: A journey into the world of the Deaf. Berkley and Los Angeles. California: University of California Press.

Disability is a Social Construct: A Sociological Perspective on Autism and Disability

An accessible audio recording of this post:

Disability is a Social Construct - Autistic Hoya by autistichoya

(Special Note: Today is Autistics Speaking Day. With the end of midterm examinations and the second annual Autistics Speaking Day, I’ve prepared a special article during a time that might otherwise have been occupied with some intense studying.)


Earlier this year, someone I knew told me about meeting a man who obtained very high levels of education (probably a doctorate) in a technical field and who is reputed as one of the top minds in the entire country in his field. He was sought by some of the most prestigious educational institutions in America. Instead, he chose to work for the government, for one of the agencies in the intelligence community. At forty-something years old, he lives with his mother, who drives him every day to work.

When I told my mother this story, and suggested that he might have been Autistic based on the facts that I know about him, she immediately shook her head and said, “That’s sad. His mother didn’t do the right thing for him. He should be able to live on his own and take care of himself, and take himself to work. That’s not a successful ending.”

“No it’s not,” I responded immediately. “You don’t have to be able to live independently to be happy or a contributing member of society.”

“But what’s going to happen when his mother passes away? Who’s going to take care of him then? He’s not going to have anywhere to go.”

That, to me, is the most significant problem, and it is a societal one.

Disability is a social construct. That may seem like a revolutionary idea, or perhaps the proud declaration of someone who would rather not use an “ugly” or “pejorative” word. But what that means is that the way that we understand disability is ingrained in our society’s attitude toward ability. When most people say or read “disability,” they understand that word to mean a person who is unable to fully participate in typical life activities because of a mental or physical impairment.

Our culture says that to be fully functional and able means that one should be able to attend a mainstream school, complete university or vocational training if desired, obtain housing, obtain and keep a steady job, and marry and support a family if desired -- all without significant outside support or assistance. While it is considered socially acceptable to speak to a college counselor while in high school, see a math tutor for algebra or calculus, and even depend on one’s parents for financial support through young adulthood (twenties or so), an individual is not considered fully able and functional if he or she is unable to do one or more of those activities without significant amounts of support from others.

By this definition, the definition propagated and permeated throughout the societies in which we live, we Autistic people are disabled. Some of us may be more disabled than others -- as some of us are more able to participate in life activities with less amounts of outside support, and others of us do now and will throughout their lives only be able to participate in some of those activities with significant amounts of outside support.

For the other Autistic folk reading this article, please understand that I am not classifying or differentiating “types” or Autistic people. I feel very strongly that you are either Autistic or not Autistic. I do not believe it is possible to make meaningful distinctions between types of Autistic people through terms like “severe” or “mild” or “high-functioning” or “low-functioning.” Those terms are not only demeaning and offensive, but also lack scientific validity. I do not think it is possible to be “mildly” Autistic.

Why is that? Autism is a bio-neurological developmental disability (and there’s that “disability” word again) defined by a certain set of characteristics -- differences in sensory processing, information processing, and communication. Those marked deviations from a typical neurological profile (or, in any case, most non-Autistic people) manifest themselves in a variety of ways -- some fairly positive, some fairly challenging, and others simply -- different. For us Autistics, autism affects and influences every aspect of our lives, throughout our lives. In short -- you either have this particular grouping of characteristics or you do not. You are Autistic or you are not Autistic.

Let me take a moment here to draw an analogy with religion. Of people who identify as religious (and one’s faith, or choice not to align with a particular faith, necessarily impacts all of one’s ideas and beliefs about everything else -- politics, ethics, and otherwise, informing and influencing all aspects of that person’s life), some are immediately recognizable as religious by glancing at them. You might see a man wearing a skullcap and yarmulke, or a woman wearing a hijab headscarf, or a man with a clerical collar -- and you would know immediately that that person is religious. In other cases, you might know a certain person fairly well, speak to him or her quite often, and never think about religion or whether the person is religious -- but that does not change the fact that that person belongs to a particular faith tradition or that that person’s beliefs about religion are an integral part of his or her identity and worldview (regardless of how deeply involved with “traditional” religious activities the individual may be.)

Similarly, some Autistic people may appear at first glance to be Autistic, based on common ideas of what it looks like or means to be Autistic, while others have become skilled, through life-experience or coaching, at “passing” for non-Autistic. Not all Autistic people are interested in Autistic culture (which, quite frankly, I think is tragic -- but a personal decision.) Not all Autistic people choose to identify themselves as Autistic -- and for a myriad of reasons, not least of which is the justified fear of discrimination or misunderstanding. When you live in a world where people think it is a compliment to tell you “But you seem normal,” and where you are under constant pressure to appear as non-Autistic as you can, that creates an environment where it is supremely uncomfortable to disclose that information.

And like people who all belong to the same faith, each Autistic person -- while sharing a common identity -- is an individual. We are not identical, and we each have our own individual strengths and weaknesses. Autistics are a diverse lot. Some of us speak, and some of us do not. Some of us have attended mainstream schools, and some of us have attended schools specifically for special education. Some of us have gone on to university, and some of us have not. Some of us can effectively advocate, and some of us have not yet learned how to advocate. Some of us can live independently, and some of us need intensive supported living services. Some of us have obtained jobs and worked toward careers in a competitive environment, and some of us struggle to find employment. We are not all alike. But we are all Autistic.

But what does this have to do with disability? Why do I use this word? Because it would be inaccurate, within the context of our society, to say that Autistic people are not disabled. It would also be inaccurate, within the context of our society, to say that no Autistic people are more or less disabled than other Autistic people. Within the context of our society, some Autistic people are more disabled than others, because of how we have come to define and understand ability.

I do not like the word disability. I do not think it should be used. I hope that over the coming generations, it will fall into disuse -- or at least, be redefined. If I could redefine “disability,” I would start with our definition of what it means to be fully functional and able. To be fully functional and able -- outside the context of our particular societal attitudes -- should mean possessing the ability to live a life that is meaningful and satisfactory for oneself, by one’s individual feelings, with the appropriate amounts of support where required to live that life. By that definition, almost no one would be disabled. Nearly every Autistic person falls into that definition -- and I only say “nearly” because I try to avoid absolutes. Notice that the definition that I have proposed does not say anything about independent living or activities of daily life. It is only in our society that “independent living” is a hallmark of being fully functional and able. I do not think that “independent living” has any correlation with the ability to live a meaningful life or to make meaningful contributions to society.

But in our society, I use the word disability. In fact, I use it quite often. And why is that? Because if I need to advocate on behalf of Autistics in order for us to receive needed services or supports, or for systemic changes to be made to benefit Autistics, I have to use the word disability to get attention, to be taken seriously, and to effect those changes.

I think this is a tragedy. I think it is a tragedy that while there are parts of the world -- usually rural, “undeveloped” (another word with such nuanced connotations behind it) areas -- where people who need significant amounts of outside support are welcomed and supported by the entire community, and where this is natural and normal, it is abnormal or exceptional in most of the “developed” world, and indeed, in the places where most people live. We look down on people who require significant support from people, especially non-family members. We pity them. Sometimes, we think of them as burdens to society because of the public funding that goes to support them. In these other parts of the world, in these isolated hamlets, these people are equal parts of the community that joyfully supports and encourages them instead of reluctantly giving to charity cases.

That is why I found my mother’s response to the story so problematic. It encapsulates, in only a few fell sentences, the attitude our society has developed toward ability and disability.

I am Autistic. For now, I am disabled.

Today, I am speaking.