What I’d Like to See Change in (and for) the Disability Community in the Next 50 Years

Above: Helen Keller (1880-1968) as a young woman in her late teens wearing a white, Victorian dress. She has a soft smile and is smelling a white rose. (Courtesy of History.com)

By Michael John Carley

(Trigger warning: This article contains mention of genocide and pictures of partial nudity.)

Frequent readers of mine know this quote from Helen Keller:

………Security is a superstition
………It does not exist in nature
………Life is either a daring adventure
………Or nothing
.

I love this quote because it reveals the terrible loss that often occurs when we stay in our comfort zones, or give in to fear. Keller’s words don’t just encourage bravery, they inform us that we have no choice but to be brave.

Yet Keller’s phrasing doesn’t intimidate either, it reassures. And Keller was blind and deaf at a time in which supports barely existed. The fact that I, as an autistic, can live by these words is one thing. If she can say it…

Herein, as a recipe for the next half-century (and with thanks to Vanessa Ira for requesting), I want to see three, specific changes: How we define disability, that we speak about our history (because we currently do not), and that we orchestrate our efforts within the context of culture change.

1. Let’s Change How We Define Disability

A black and white photo depicts a poster from the 1990s taped to a window. The poster is from the disability rights organization, Not Dead Yet. On the right is a drawing of a skeleton lying in a coffin. On the left from top to bottom are the words, “The Real News. People with Disabilities don’t want your pity or your lethal mercy. We want Freedom. We want life. We’re Not Dead Yet.” The standard person in a wheelchair disability logo is worked into the inside of the “o” in the word “not.” Photo: Disability History Exhibit. Alaska Department of Health and Social Services)

A. The Deficit Lens

To start…All the widely-read definitions of disability are deficit-based.

From the World Health Organization (WHO):

………Disability results from the interaction between individuals with a health
………condition such as cerebral palsy, Down syndrome and depression as well as
………personal and environmental factors including negative attitudes,
………inaccessible transportation and public buildings, and limited social support.

From the US Centers for Disease Control (CDC):

………A disability is any condition of the body or mind (impairment) that makes it
………more difficult for the person with the condition to do certain activities (activity
………limitation) and interact with the world around them (participation
………restrictions).

From the Americans with Disabilities Act (ADA):

………an individual with a disability is a person who:

………•  Has a physical or mental impairment that substantially limits one or more major life activities
………•  Has a record of such an impairment
………•  Is regarded as having such an impairment

Is the use of the word, “impairment,” inaccurate? No. But it isn’t “accurate” either. It doesn’t take a great brain to understand that this is a true “beauty in the eyes of the beholder” or “two people looking at the same rock from different angles” situation. If our choice of whether or not to use an asset-based definition, or a deficit-based definition is arbitrary? Then why do we choose the deficit model? Is it really just because we can argue it so easily? Or because our collective insecurities demand it?

In addition to our cultural DNA’s preference for the deficit model, another contributing factor is that an asset model has limitations, and everyone subliminally knows this.

Multiple attempts at wordplay, for instance, have sought to linguistically alter “disability” through a positive lens. “Differently abled,” “Don’t ‘dis’ my ability,” “handi-capable,” etc. Their failure to catch on as substitute terms reflects more than the arguable condescension lying underneath. Maybe anything with a prefix of “dis” (as put forth by the second example) is simply bound to have a psychologically negative effect? Maybe—dare we say it?—the positive lens isn’t the answer, even if it’s better than the negative lens?

What if we stopped caring about the lens, and looked at the whole camera? And then, what if we turned the camera 180 degrees around? What if we started to define disability by looking in rather than out? What if we defined disability as the rest of the world’s inability to include, and we put the negative stigma on them (i.e. you, the non-disabled person)? Very often we bitterly have to concede that the problems of disabled people are entirely external anyway, that our only problem is other people’s attitudes, right?

And immediately someone will challenge that very point, usually with the argument about, say, the medical needs of a significantly challenged person, and how it isn’t external sources that prevent them from walking, speaking, or achieving a college degree.

It’s a larger topic than I have room for here, but since when is independence, or not needing assistance, the measuring stick for the value of a human life? First off, don’t we all need assistance at some point? And even if we didn’t, aren’t we ready as a society to acknowledge that human progress has not been solely dependent on competition, that it has actually been equally if not more dependent on cooperation? And sharing? Or are we still believing in the “survival of the fittest” because it serves to justify our flawed economic system?

Think of the wheelchair user, and the accumulated effect that they endure over a lifetime of passing by inaccessible buildings. Since accessibility is at least 50% an economic challenge, how then to interpret the refusal to spend what is only money on making all our buildings accessible? Does “effect” herein translate to someone saying to you, the wheelchair user, “We don’t care what your needs are” several times a day for your entire life? Herein, is the real “effect” trauma? Physical disabilities are not mental health conditions save for the fact that we make them so by our treatment of the people we negatively impact. And you don’t have to be a Bernie Sanders fan to know that the money for such change, despite the whining, more than exists.

In this black and white photo from the 1970s, two white men in their 30s or 40s who use wheelchairs, are seen in front of government building steps that they clearly will not be able to use to gain entrance.  They are wearing suits, and only the back of a passerby, presumable an older woman, is seen other than the two men. (Photo: Disability History Exhibit. Alaska Department of Health and Social Services)

In the big picture, this might be less about “disabilities” and more about “minorities” and “majorities.”

“Minorities” and “majorities” are two words thought of as sociological terms, but they’re math terms first. And if you are a part of any majority (racial, gender, economic class, immigration status…) you will instinctively believe that your way of doing things is the best way. That’s just how majorities think, whether their way of doing things is brilliant or flat-out delusional. And if you’re a part of any minority, you instinctively will doubt your way of doing things—again, whether your way of doing things is brilliant or flat-out delusional, because that’s just how minorities think. Until we are made consciously aware of how irrational these impulses are, we just obey the instinct.  Would a majority-deaf world not instinctively look upon the hearing minority as inundated with anxiety-producing stimuli; factors that render them nervous wrecks?

In softening the ideas from the militants of long ago, maybe “disability” can be defined as society’s insecure demand to be able to “exclude”?

B. Categorization—Compartmentalize Better, or Communicate Better

Of all the six traditional elements of Diversity, Equity, and Inclusion (DEI)—race, gender, sexual orientation, religion, and veteran status—disabilities is easily argued as the most intimidating for outsiders. To obtain the confidence necessary in, say, your company’s onboarding process, one might feel they need to become an expert on “disabilities”—and that might be 1,000 diagnoses you have to learn.

A great example of this lies within corporate ERGs (Employee Resource Groups—basically, support groups). An ERG of five people of Latin descent will still be composed of different people, perhaps with intersectional uniqueness if not also distinctly different personalities. But their shared Latin heritage will justify the gathering. They will feel more comfortable saying certain things to each other than they would amongst non-Latin people.

But have a support group for disabled folks? Let’s say you get one wheelchair user, one hearing-impaired person, someone undergoing chemotherapy, an autistic, and someone with Post-Traumatic Stress Disorder suffered during a childhood of poverty…there’s not a lot of shared experience there.

Joining many others who ditched their wheelchairs at the bottom of the Washington DC capital steps, 8-year-old Jennifer Keelan, in a picture now made famous, crawls up the many steps to demand the passing of the 1990 Americans with Disabilities Act. Surrounded by others, she is looking at the camera, her hands on a step. She is a medium-built, white girl with straight blond hair. She wears a red and white headband, a light blue shirt, and blue jeans. A white, rolled-up piece of paper sticks out of her back pocket. (Photo: Disability History Exhibit. Alaska Department of Health and Social Services)

When I was the Executive Director at ASTEP (now called “Integrate”), working with Fortune 1000 companies in NYC, we went with the following, two-way model of disability:

Visible Disabilities:

………Physical – mobility limitations…
………Sensory – hearing, vision…


Non-Apparent Disabilities:

………Mental health – depression, anxiety, Bipolar Disorder…
………Physical health – diabetes, epilepsy, cancer…
………Learning – dyslexia, ADD…
………Developmental – ADHD, autism…

But I have since morphed into a fondness for the following three-way outlook:

Accessibility:

………Access/opportunity— plus the trauma of access denied

Neurodiversity:

………Some Disclosure options
………Identity vs. pathology
………Behavioral differences
………“Cherry picking” vs. truly inclusive

Health:

………Privacy (Cancer, HIV…)

I like this version better for many reasons, one of which is that it resolves many contradictions, such as the topic of disclosure. Neurodiverse folks often have the ability to hide their diagnosis, and so disclosure becomes an option that is theirs to choose. In almost all cases herein, it is much better for the individual’s mental health if they are disclosed, and feel valued by their surroundings for who they are. To suspect that you are similarly valued, but not to have disclosed, will always contain much internal doubt about whether or not people really do accept you, or if they accept you only because they think you’re like them.

And yet in the health space, disclosing your condition to the world is most often not a good idea, as significant medical diagnoses can often be used to marginalize or stigmatize you in ways that can especially stifle your career trajectory at work.

C. Stop Person-First vs. Identity-First Language Infighting

Choosing person-first language means that you regard yourself as a human being first, and that your condition or diagnosis is only one aspect of who you are. Using autism as an example, you are herein “a person with autism.”

Choosing identity-first language means that are aware that some folks might want you to feel bad about the fact that you have (again) autism. Or, you might regard autism as the most important factor in determining who you have evolved to become. Here, you are “an autistic person.”

I highly doubt anyone would notice, but when referring to myself I try to intersperse all my writings with both person-first and identity-first references. It’s not an accident. I’m trying to show that this is not a debate worth going to war over. Both sides of this argument are rooted in empowering the individual in ways that do not demean themselves or others. Both options rock. So why demean someone else based on your choice, especially a fellow disabled person? In the trans community, do people go after each other for their individual choice of pronoun use? No. In their community, there are healthy conversations for sure, but when encountering another member who uses different pronouns, they respect the individual choice.

In the autism world, this conversation appears to have a 60-40 discrepancy in favor of person-first that, frankly, I see as being debated in a healthy, non-judgmental manner. Now, that said, if you take a quick peek at social media—which is NOT an accurate read on everyone on the spectrum—that will tell a different story of perhaps a very vocal online majority of identity-first practitioners. That’s no criticism, as everyone needs to feel heard.

But whatever the real numbers, it’s not worth a divisive competition of suffering between fellow spectrumites by any means. Furthermore, I see neurotypical people getting more passionate, opinionated, and militant about this issue than most people on the spectrum. That really doesn’t help, and could/should be interpreted as colonialist.

2. Let’s know the REAL History

In a photo from the 1940s, 5 men who we assume have disabilities (because their faces carry expressions that are not associated with able-bodied people) are posing for the camera and wearing their concentration camp uniforms. (Photo: Disability History Exhibit. Alaska Department of Health and Social Services)

Occurring all across western culture is a deep reckoning with the historic treatment of people of African descent. People with disabilities/disabled people need to cheer, support, and also take notes. For when I mentioned “society’s insecure demand to be able to ‘exclude,’” I may not have been as overreactive as you thought.

Ancient Greeks took the disabled into the woods and chopped us up. The Spanish Inquisition of the Catholic Church drowned us, or lit us on fire. Europeans from the middle ages throughout the first half of the twentieth century (when Americans joined them) used us for scientific experiments without permission or anesthesia. The Nazi “final solution” included us. Until the 1972 discoveries within Staten Island’s “Willowbrook” facility, U.S. residential institutions neglected our nutrition, our sanitary needs, allowed us to often die from treatable diseases, and repeatedly raped (mostly) female residents.

Globally it is not hard to discover pockets of such eugenics. As late as 2010, California’s prisons were still sterilizing (what were almost exclusively, non-white) female inmates, in exchange for early release.

All throughout this soul-crushing history, families were encouraged not to love their disabled children as, for centuries, under the “religious model” of disability, we were interpreted as punishments from God for perceived sins of the parents.

Did we improve that much through the centuries, and into the 1960s-1970s, when parents of autistic children were told “Put him in a home and forget you ever had him”?

In a black and white photo, most likely from the 1950s, seven men are gathered inside the Willowbrook facility. Two are sitting on an elongated bench and five are standing on what looks like a stainless steel floor. Most are emaciated and two of the men are completely naked. (Photo: Angela Baxter collection. Willowbrook State School)

There are many “models” of, or ways you can look at disability. There’s the social model, the economic model, the aforementioned religious model, and the medical model. And under the medical (or deficit) model of disability, we are defective. It is only here, in this figurative, nasty space, where the combining of people with disabilities makes sense. The lack of assumed potential in all of us created an opportune, hypothetical disposal unit that justified centuries of murder. 

And as in slavery, our ancestors who did not have disabilities had little if any objection to these horrors.


A painting from the middle ages shows four people (who all look in their 40s) in an outdoor yard. In the distance across meadows is barely seen a city. Left to right, the four people are a) a man wearing a cone-like object for a hat and a pink and white overcover. He is holding a knife that he carves into the head of the second person, another man, b) who sits in the chair. The first man’s eyes are focusing on the bloody hole he is making in the second man’s head. The second man’s eyes are dazed. He sits slumped in a white shirt with red pants into the chair. The third man c) is a friar with a large brown robe. His hair is grey and he is carrying a pewter container. He looks at the first man and, judging by his raised hand, he is either questioning, criticizing, or encouraging the first man. The last person is a woman, d) who stares with noticeable but not passionate interest at what the first man is doing to the second man. She wears a white headdress and a brown overcover dress. Her elbows are on the table with one hand holding up her head. Oddly, she is balancing a large red book on her head. (Photo: Disability History Exhibit. Alaska Department of Health and Social Services)

So when is our moment? When do we get to share this all with the world?

3. Change our Culture

A picture of Harriet McBryde-Johnson (1957-2008), a middle-aged white woman sitting in a wheelchair that appears far too big for her. She poses with her head resting contemplatively on her hand. The backdrop is black. She wears black pants, shirt and is partially draped with a South American-looking blanket that has purple and black and white stripes amidst a mostly black coloring. (Photo: The New York Times)

In 2003, I was about to say “no” to the offer to start what would become GRASP. I had been a minor-league diplomat who throughout the ten years of working for my organization had watched multiple Executive Directors—as I recall, five EDs in one six-year period—who justifiably quit or were pretty much left with no choice but to resign. Twice I had been offered the post and twice I had turned it down (we had a brilliant, but very difficult Board of Directors).  Being an Executive Director, in my second-hand experience, was an exercise in self-loathing, nor was I up for a career change.

But while mulling the offer, I read a then-recent New York Times Sunday Magazine article written by one Harriet McBryde-Johnson. McBryde-Johnson, a Georgian who had significant enough physical challenges that she required assistance to accomplish basic bodily functions, had in her life risen to become a successful lawyer and disability advocate.

A very famous philosopher, Daniel Singer, had been writing about how it would be more humane to kill people like McBryde-Johnson at birth. The justification for him lay in his judgment that her life wasn’t worth living—that her life was too full of suffering. Singer, a handsome, best-selling author of several books, and a noted animal-rights activist and strict vegan, had read McBryde’s writing through the organization she belonged to, Not Dead Yet.

In response, he invited her to a public discussion that to her, would force her to defend her right to live. The discussion would be on his home turf of Princeton University, where he taught. Should she accept such an awful proposition?

Her article, “Unspeakable Conversations,” chronicled the entire experience. The first line, “He insists he doesn’t want to kill me.” is impossible to walk away from.

That two supposedly progressive causes, animal rights and disability rights, could be at such polar opposites on a topic, is a reality of assumed alliances that our culture has not spent enough time examining. Needless to say, it doesn’t take an enormous investigation to discover that Singer in both of these causes, was assuming that he had the right to judge the value of lives that were anything but his own.

But this is not a unique situation. In physician-assisted suicide, a cause celebrated by the left, the disability community has often advocated against the idea, and for the rights of the victim (whether they are voluntary or not) to live.

There are even such buttings of heads outside disability, wherein we “progressives” get caught being intellectually sloppy; such as the progressive value of organic farming. If the food they put into our grocery stores is more expensive than non-organically-farmed food, then economically challenged people don’t have access to it. By design, if poor people get shut out of any development, then it cannot be progressive.

And then there are topics that are very uncomfortable to Americans, like sex. Some people with disabilities don’t have the use of their hands. Well, how do they accomplish the highly necessary task of pleasuring themselves without help? Such an examination really challenges our prior perceptions of both sex work, and privacy itself. Going further into actual sex, think about two physically challenged people living in an assisted residential space, and who want to have sex with one another in full consent…Well, what if they may need a third person to push their naked bodies together?

These are loaded questions that we, as Americans, and not just the disability community, have to become more comfortable talking about. By avoiding them and giving in to our cultural discomfort, we don’t just cause suffering; we run from the stories and narratives that could be the pinnacle of diversity and of humanity at its most beautiful.

Needless to say, after reading Unspeakable Conversations, I agreed to found GRASP.

Conclusion I

Fifty years is a long time. What I’ve asked for thus far really isn’t much. As a matter of fact, with the exception of money spent to make all our structures accessible to all, I’m actually asking for us to trash what we don’t need infinitely more than I am asking for anything new.

And while a large number of Americans are anything but behavioral pluralists, few of us are true behavioral bigots. I’d argue there’d be little to no objection if most neurodiverse conditions were simply thought of as natural extensions of the human experience in these 50 years.

I am asking us to extend more energy and thought into how badly we still play these cards we’ve been dealt. Our attitudes these days are getting better. But they’re still not informed. As to the hidden biases we all possess, even the nicest and best-intentioned of us can be pretty disappointing. For example, how many large Diversity & Inclusion departments in universities and corporations actually address disabilities? Usually, these are race and gender equity departments that should be praised for their work therein, but condemned for the gall to call themselves Diversity, Equity & Inclusion departments when they so neglect the other aspects of DEI. Think of the Midwestern school that wants a pat on the back for its inclusive classroom…when the rest of the school is exclusive. Think of a Presidential candidate mocking a disabled reporter, and winning his election.

Our ideas about inclusion are, at best, in their infancy.

Conclusion II

Once upon a time, there were campaigns such as this…

A black and white photo composition from the Nazi era shows five photos, and some text in the bottom center area. The text (translated into English) reads: “Some people are born to be a burden on the rest.” In the top right photo four white boys, ages approximately 9-14, are sitting on a wooden bench inside an interior. They all have short haircuts and the most visible boy looks to have Down Syndrome. In the top right photo is a white boy around the same age wearing a white collared shirt and dark shorts. He is seated on an unidentified device with his hands resting on his thighs. Like the boys in the other picture, he looks unhappy. His feet are curved inward. The photo at bottom left reveals a white woman aged anywhere between 13-45 with sandy, shoulder-length hair. Only her head is shown and she wears a concerned look on her face. The photo in the center bottom shows rows of identical gravesites. The photo to the right shows a middle-aged, white male with short, blond hair who has an authoritative facial expression. He is presumable an Aryan doctor. (Photo: Disability History Exhibit. Alaska Department of Health and Social Services)

Some disabled people have faces that rest or relax on different expressions. And there is a parlor trick wherein this characteristic can be spun as subliminally equating to demonic possession. It’s a tool used to raise money, to scare (if there’s one thing all humans share, it’s a fear of the unknown), and historically, to murder. The still-standing Autism Speaks, as evidenced by the following photo, employed this tactic in their ghastly video, “I Am Autism,” as recently as 2009.

This color picture shows a white male in his 20s who is also wearing a unique facial expression. He has short hair. He is wearing glasses. but squinting through them. He wears a white t-shirt and behind him is a lot of well-cut grass. (Still photo taken from the video, “I Am Autism”)

Mel Baggs (1980-2020), who used the pronouns “Sie” and “hir”) was one of our earliest heroes in the autism world. Sie was a non-verbal spectrum person who communicated, and regularly blogged (as “ballastexistenz”), through a keyboard.

In response to a similar picture that headlined a then-new (and short-lived) campaign by the Autism Society of America—one warning us that “This is the face of autism!“—sie posted the following picture of hirself…and wrote the following.

A short-haired, heavy-set person wearing a white t-shirt is lying on hir side on what looks like a stainless steel floor. Sie is holding a blank wooden block and staring at it. Three similar blocks are lying on the floor. (Photo: Mel Baggs. Used by permission.)

“This is what I look like when I’m trying to relax, or zone out a little, or shut off vision so that I can hear what is going on around me. I have no doubt that someone could use this image to show the tragedy and despair inherent in autism . . . Black-and-white images such as these, and the captions that go along with them, are designed to create a reaction. Most often, disability organizations, run by non-disabled people, use them to elicit pity — and money, at the expense of the truth. Look at the autistic person in her own world, they say. Isn’t it tragic? What I am doing in this photograph is no different than someone curling up with a good book to unwind after a long day . . . Some autistic people would even say that it’s bad to publish pictures that look like this. Better to publish the ones that make us look like real people. Those are the better pictures…I say that plays straight into the hand of people who think there’s something wrong with the way we look.”

Let’s turn that camera around.

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3 thoughts on “What I’d Like to See Change in (and for) the Disability Community in the Next 50 Years

  1. MJ:

    Bazinga!

    When I think of Mel, my mind goes back to 2006 to Burlington, VT. Joelle Smith and I were visiting Mel in the apartment. Sie lived with her cat and had lots of books and a world map on the wall. Mel and Joelle, tech people who talked tech while I read some autism books with the cat because that was easier for me to understand. Tech talk is like Klingon, I don’t understand it and both of them went to some tech thing the next day while I explored Burlington.

    On a side note, I read articles about disabled parents, and look at the photo, I look at the kids because I still think of disabled kids. The parent(s) can be sitting in a wheelchair, but I don’t notice the equipment the adult uses. It is 2021, and as long as the kid is happy with mommy and daddy, whatever machinery or equipment they use shouldn’t matter.

    And I have said to people over the years that autistic people marry and have kids and grandkids.

  2. As always, MJC hits the nail right on the head on so many issues vital to the future of the disability community. As a professional with a half-century under my belt working with, learning from and collaborating with neurodivergent folks, I’d like to quote Satchmo by saying that if Michael’s vision is realized, “What a Wonderful World It Would Be”. But there is so much more work to do. To Michael’s comments I’d like to add that if all NTs can reflect on the gratitude we owe to the wider range of humanity, we can all grow and experience a better quality of life.
    Barry Prizant (author of Uniquely Human: A Different Way of Seeing Autism)

  3. Thank you MJC. Your contributions to the discussion of neurodiversity are tremendous. I so appreciate your perspective and your willingness to talk about topics that are so difficult for others to mention. I particularly like the spotlight on our need to change our culture. This is huge and requires huge shifts in how people think and what they believe regarding human differences. Keep fighting the good fight my friend.

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