Note: Autism Spectrum News has allowed me to herein adapt an old piece of mine into a three-part series. I jumped at the chance as the piece needed an update.
Frequent readers of mine know the following statement: “Security is mostly a superstition. It does not exist in nature….Life is either a daring adventure, or nothing” (Helen Keller).
Helen Keller with her hand on a braille book as she smells a rose
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. It doesn’t just encourage bravery; it tells us 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, so if she can say it, so can we…right?
Well, a recent, excellent article by fellow spectrumite and Autism Spectrum News author Sam Farmer brought many of us Helen Keller hero-worshippers to our knees. Keller, early in her life, favored eugenics. An emotionally fraught but easy decision to cancel, right?
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Going back to Keller’s quote alone for a moment…I have autism. And when folks like us hear what might (even remotely) feel like pressure to be “brave,” many of us sometimes shudder because of past experiences when we were criticized or made fun of when we were scared. What we used to call “cowardice” has been thankfully re-examined under a myriad of more humane and accurate explanations – like “fight or flight” – and this is massive progress on our roads to true inclusion.
But as an emotionally unhealthy byproduct of that change, we’ve grown to almost scorn real bravery. To many, bravery seems an obligation thrust on us only by past perpetrators, enforced by “jerks” or macho nonsense. Our last and perhaps future president called fallen military people “suckers” and “losers.” Despite historically low crime rates, many people can’t feel safe unless they own (often multiple) firearms. And people all across the country sacrifice their figurative souls, their literal souls, their mental health, and the mental health of people who love them in order to keep jobs that treat them miserably.
So, I’m prefacing this 50-year, 3-part plan/article with advice from my now-exposed hero (Keller) in an area where I’d like to see a change in all Americans, as without bravery, we can’t implement any great ideas…no matter how great they may be. Spoiler alert: Keller changed her opinion completely later on. Can she still be my hero?
1A. The Deficit Lens
To start…All the widely read definitions of disability are deficit-based. Even from those who have championed our cause.
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” by both of these entities 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 disabilities as deficits so easily?
I’d argue that when folks with AND without disabilities are confronted with the unknown, as a default, we just automatically go to the negative. I say all the time that if you bring city kids into the country, they want to kill everything that moves. And if you bring country kids to the city, they wonder why all these weird people aren’t locked up. A fear of the unknown is one of the few human characteristics that binds everyone. This vague fact shapes and creates opinions that extend to specifics about people of different skin color, about when you see a text from your boss, about when your child is out late and hasn’t called in…Our overall progress herein is surprisingly only 10% of things we need to learn. 90% of the effort will be in “unlearning” the attitudes we’re conditioned to have, no matter how progressive we may think we are. Unlearning is an underestimated factor in every social movement. When we say a negative comment to a child, we instinctively think that one apology rectifies the damage. It doesn’t. Laziness in us enforces a one-to-one math. But the math is more like five to one or ten to one. You need five or ten positive affirmations or apologies to rectify the damage of one hurtful comment.
Going back to the deficit model, another contributing factor is that a theoretical “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, 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 out rather than in? What if we defined disability as the rest of the world’s inability to include us, to accommodate us, and then 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 or that our only problem is other people’s attitudes, right? Well, then, let’s back up that statement and put the lens there, and see how negative the defaults are when zeroed in on a majority.
Immediately, at least one reader will challenge this. To them, disability can never not be a negative. 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…
Well, 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” lie because it serves to justify our economic system? Someone has to be the “dumbest student in class” or the “worst player on the team.” Relativity aside (i.e., how good is the class or team), why do we need to make the people who fit these descriptions…feel bad?
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? Are we saying to the wheelchair user, “We don’t care what your needs are” several times a day for your entire life?
Physical disabilities are not mental health conditions, save for the fact that we make them mental health conditions. 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 country.
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 crap. And if you’re part of any minority, you instinctively will doubt your way of doing things – again, whether your way of doing things is brilliant or crap because that’s just how minorities and majorities think. Until we are all educated and made aware of how irrational this instinct is, we just obey the anthropology. Would a hypothetical majority-deaf world not instinctively look upon the hearing minority as inundated with anxiety-producing stimuli that renders them nervous wrecks? And, therefore, capable of less?
In softening the ideas from the militants of long ago, maybe we shouldn’t look at our inability to include. Maybe “disability” can be defined as an insecure society’s subliminal yet passionate demand to “exclude”?
1B. Categorization – Compartmentalize Better
Of all the six traditional elements of Diversity, Equity, and Inclusion (DEI) – race, gender, sexual orientation, religion, and veteran status – disabilities are 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, these are support groups). An ERG of five people of Latin descent will all be 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 the non-Latin people that dominate their company.
But to 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.
When I was the Executive Director at ASTEP (now called “Integrate”), working with Fortune 1000 companies in New York City, 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…)
- Some Disclosure options
I like this version better for many reasons, one of which is the aforementioned example of the wheelchair user being told through building designs that we don’t care about them (and that “physical” and “non-apparent” overlap). But this new setup also 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. And in almost all cases herein, it is much better for the individual’s mental health if they are disclosed. When disclosed in their communities, they feel valued. To feel similarly valued, but not to have disclosed will always contain much internal doubt about whether or not people really do accept you, or do they only accept you 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, say, your career trajectory at work. “We’ve got this promotion to give, and Jane is easily the best candidate, and she’s earned it. But Jane’s cancer is now stage four, and turnover costs us money, so maybe…”
Stay tuned for “What I’d Like to See Change in the Disability World Over the Next 50 Years – Part 2: Know and Teach the REAL History.”
Michael John Carley is the Facilitator of the “Connections” program at New York University for their worldwide autistic students, and he also has a private, Peer Mentoring practice. In the past, he was the Founder of GRASP, a school consultant, and the author of “Asperger’s From the Inside-Out” (Penguin/Perigee 2008), “Unemployed on the Autism Spectrum,” (Jessica Kingsley Publishers 2016), “The Book of Happy, Positive, and Confident Sex for Adults on the Autism Spectrum…and Beyond!,” (Neurodiversity Press 2021, where he recently became the Editor-in-Chief), and dozens of published articles. His many other current posts include being the Neurodiversity and Leadership Advisor for the League School for Autism, and he is Core Faculty for Stony Brook University’s LEND program. For more information on Michael John or to subscribe to his free newsletter, you can go to www.michaeljohncarley.com.
Articles in This 3-Part Series
- What I’d Like to See Change in the Disability World Over the Next 50 Years – Part 1: Let’s Change How We Define “Disability”
- What I’d Like to See Change in the Disability World Over the Next 50 Years – Part 2: Know and Teach the REAL History
- What I’d Like to See Change in the Disability World Over the Next 50 Years – Part 3: REAL Culture Change
As an autistic diagnosed in infancy, accessibility is a stickler for me as well, and I believe it should extend to the mental area as well. I’m a big gamer, so I value things like quality-of-life features and adjustable difficulty since, in the latter case, overly challenging games can be toxic to my mental health.
Autism is 100% a disability, this is coming from an autistic person.