Ed Roberts, one of the founders of the Disability Rights Movement in the United States, was a man who understood the importance of unity within the disability community.
Ed Roberts knew that unless and until everyone across the disability spectrum – the deaf, blind, physically disabled, people with chronic and non-visible disabilities, the neuro-diverse, mentally ill, developmentally and intellectually disabled – could come together, we were going to go nowhere real fast.
Straddling a few of the disability spectrums as I do with the d/Deaf community, C-PTSD and TBI communities and the parents of people with Down syndrome community, I see this quite a lot, as it is expressed in disability hierarchy and also within the lack of unity and harmony within different disability communities.
What is Disability Hierarchy?
Disability hierarchy is “a social construct that makes certain kinds of disabilities more acceptable than others,”¹ This hierarchy was culturally established by the non-disabled and it revolves around disability being a negative presence in life.
With disability being a negative, the more non-disabled someone appears to be, the higher up the hierarchy they are.
Growing up in this culture and internalizing what our culture tells us we should, many of us with disabilities buy into the hierarchy and strive to be as non-disabled as possible. We squelch all the good stuff that makes us who we really are, we try to pass as non-disabled if we can. We sputter those “I am not defined by my disability!” pieces when really, our disabilities should be defining us: they are an essential part of who we are!
Our disabilities are the foundation upon which we navigate our world; saying they don’t define us is limiting ourselves to what non-disabled people do, think, say, feel, move, here, see and be.
Our Power is In Who We Are
We offer nothing by being more alike the non-disabled than not. We weren’t born to emulate; we were born to be who we are, and that includes our disability. Our disabilities should define us because the reality of our life is that they DO define us.
But they should not limit us.
I repeat: our disabilities should define us because they are a fundamental and intrinsic part of who we are. But they should not – as they often do – limit us. Having disabilities that define us but do not limit us opens up the conversation to the role of an accessible world, to universal design, to a cultural shift that recognizes the value and worth in and of all people.
Intellectual Disability: the Bottom of the Hierarchy
First of all, this might be obvious but I want to make it clear that a developmental disability and an intellectual disability are not the same things. A developmental disability is a disability that you are born with or that occurs at birth. An intellectual disability is purely of the mind. A person can have both at the same time or one or the other. They may or may not be visible disabilities.
Intellectual disability is at the bottom of the disability hierarchy.
That is, a great many people who have other types of disabilities actively try to distance themselves from intellectual disability, “we’re not one of them.” People with developmental disabilities might get caught in the overlap as people can have both types of disabilities.
The opinions and contributions of people with intellectual disabilities isn’t seen as valuable or as important as those of people who have different types of disabilities.
I saw that recently online with the threat of the Special Olympics cut.
When the Special Olympics was still on the fiscal chopping block, threads were floating around the internet from disabled people that were essentially saying it was okay to cut it, less inspiration porn anyway. Or that it was problematic to begin with, and what about all that “special”? I doubt any of the comments that I saw sprang from disabled people who actually know or have friends with intellectual disabilities.
And this is the thing: I understand! I get it! I mean, I remember when I was trying so hard to get the buy-in from companies who were recruiting and hiring. I was trying to get them to see the disabled people that I was serving through my program as attractive job candidates. I was trying to sell their education and skill sets, trying to get employers to be less scared of the costs of accommodation. With employers seeming to equate “disability” with either “wheelchair” or “Down syndrome”, I leaned hard into the easier choice, “wheelchair.”
“We’re Not One of Them”
All of us with disabilities face discrimination and prejudice from a culture that currently values a presentation of able-bodiedness. It is hard to grow up in this climate and retain a sense of pride in who we are, most especially if we grow up without a strong, proud disability community around us.
It’s also hard to see the value in our disabilities when we are actively being encouraged to “overcome” them and to be more like non-disabled people than to lean into our disabilities and really let them define us, learn from them, sink into what they have to offer.
A personal example for me is that my being deaf gives me strong skills in non-verbal communication. I am an expert, able, highly skilled international traveler, not despite being deaf but because I’m deaf. I read people. I read their energy, their facial expressions (or lack of), their body movements, their smallest gestures.
I get excited when I see a future in which people like me growing up will be encouraged to learn how to read people even better from the start. Rather than “overcoming” their lack of hearing, they would be taught to lean into skill sets like non-verbal ability, and these would be translated to careers in communication and cross-cultural understanding.
All disabilities give us something. All of them, bar none.
Whether it’s a deeper understanding of topography, design or an expertise in food, nutrition, chemicals, environment – there is not one disability out there that does not give us something, that does not contribute something to the world. Even if that “something” is a negative, it’s still contributing because it’s teaching us the value of what we want through contrast *
Once we with disabilities really understand this, get it in our heart of hearts, it’s so much easier to rise above all the ableism we have internalized. It’s easier to see people with intellectual disabilities and know that they are indeed one of us. They face all the same stuff we do, all the discrimination and prejudice (only more than we do because they get it from the greater disability communities as well as from the non-disabled mainstream).
Like us, their disabilities have given them something, but simply as human beings they have worth and value in and of themselves.
Back to Unity within the Disability Community
Ed Roberts knew that unity is a strength.
Our problem is not with the different disability communities; our problem is ableism and a mainstream culture that is actively telling us to change ourselves to be like them. Turning on each other and pushing another disability group lower won’t help us rise.
It won’t give us jobs, health insurance, access or opportunities.
What will help us is would be uniting and harness our collective power and strength.
What will help us is understanding our own value, in and of ourselves and also with regard to disability.
Meriah Nichols is a career counselor. Solo mom to 3 (one with Down syndrome, one gifted 2E). Deaf, with C-PTSD and TBI, she’s also a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.