This is a post about disability hierarchy: what it is and what to do about it.
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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, neurodiverse 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.
- Kim Sauder, read more from her excellent essay, “Fighting My Internalization of the Hierarchy of Disability“
² A disability that I see as contributing through the negative is depression. Depression shows us the value in all of the things that heal depression, the necessity for nature, balance, love, community, personal progress.
This goes to the degree that in some disabled communities (like the d/Deaf Community and the Little People Community), people don’t even identify as being a part of the greater disability community.
Read More from Meriah Nichols
- A Short History of the Disability Rights Movement
- The Right to Live in this World: Dr. Brown’s Book List for Young & Old Disability Rights Activists
- 3 Reasons to Say “Disability” Instead of “Special Needs”
- Let Down Syndrome Define You: A Letter to My Daughter
- Why “Come Out” as Disabled If You Can “Pass” As Non-Disabled?
Listen to Me Read This Post in My Podcast Below (and Subscribe!)
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Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
Yes! It’s even rampant in the Down syndrome community. I was never so hurt and shocked to learn parents were boycotting Born This Way because the cast can talk. Then there were accusations of the Cast being “high functioning” (anyone whose read my books about Sean would never accuse him of being a rocket scientist!)
His speech struggles have still not been overcome—and creative captioning filled in his unintelligible moments.
BUT most disturbing is the inner classification of “high” and “low” functioning In our own community! Our kids with Down syndrome are all over the place. Better social skills —some read very well—but still aren’t potty trained. So there’s no “global” functioning level —and so what if someone is non-verbal? I certainly hope they are provided with alternative means of communication. So the hierarchy is horrible and acceptabce in our own communities is critical. United we Stand! Divided we Fall!
Oh, I remember that all too well, Sandra… totally. That was a huge backlash.
Thanks so much for your comment, and yes, United We Stand! Divided We Fall!
Netflix premiered a new show called “Special” in which a man with mild CP is set up on a blind date with someone who is Deaf and says “Even I can do better than that”
I am bewildered by the objective of the show.
This is rampant among autistic people. There are so many people who are like “I’m autistic but I’m not like those low-functioning people. I’m high functioning” or “I have Asperger’s, so I’m intelligent, unlike the people who can’t go to the bathroom by themselves.”
And then it goes the other way around, when those autistic people who are able to post on the internet and write blogs are dismissed as “too high functioning” by parents of autistic children.
It is really a worth reading article @Meriah I really liked this article and the interpretation that you have expressed your thought is highly remarkable…
Do you have a blog? Where do I sign up to get your articles?
That was one of the best articles I have ever read. Thank you for that insight!
Wow, thank you! there is an automatic “welcome mat” on the blog that pulls down and you can sign up there. Thanks again for your kind words
I am on e again reminding people of the disabling condition called MCS, which is probably entirely caused by human action. Multiple Chemical Sensitivities to many common unnecessary commercial pushed profitable substances keeps otherwise able people isolated and in discomfort. Synthetic petrochemical fragrances found on most lotions, potions, personal care, cosmetics, laundry and cleaning products cause reactions ranging from rashes to anaphylaxis. Sometimes a MCS sufferer asks for reasonable accomodation on the job. Sometimes coworkers try to sabotage their requirements for some reason, sometimes because they can’t stand a restroom without fragrances. Neighborhoods filling the air with effluent from dryer vents keeps the prisoners indoors. The residue from chemicals in city water makes it difficult to even bathe. But a canary (name refers to the sensitivity a canary has to gases that made them useful for warning miners of toxic conditions human senses did not detect until too late) finds no sympathy from most people who either don’t believe them or choose fragrances over family and friends. Corporations who profit from disabling people are rude when contacted for information or help.
Doctors are taught in corporate supported programs and many push the idea that MCS is a somataform condition. They have tested drugs and behavior therapy on my household canary with no success, and some negative effects, especially from generic SSRIs.
Just venting, because I feel MCS is off the disability hierarchy and if it were adopted by the disability community, that inclusion could be mutually beneficial
I was actually thinking of MCS multiple times while writing this essay.
It’s not generally accepted in the greater disability community? I thought it was!
Two categories, often not considered, are disease related disabilities and chronic illnesses, such as cancer or MS, and multiple, often age related, disabilities. Historically, in the independent living movement, we made the distinction that we had disabilities and, to get away in part from the medical model, weren’t sick. But that attitude excludes those living with chronic or terminal illnesses that cause disabilities. My leaders in the community, not unlike the general population, are not talking about the new disabilities they have. We need to lead the way in discussing, accepting and valuing the experiences of those facing illness caused disabilities and secondary disabilities like post polio.
And Post Polio Syndrome – PPS, if you will – a relatively recently identified syndrome that affects us survivors of polio by revisiting our earliest issues, such as the paralysis, weakness, muscle degradation, plus adding fatigue & chronic pain to the mix. Puts us “back” into wheelchairs, braces and restricts our lives a 100% more than just aging does.
With respect, wheelchair is NOT an easier choice.
None of them are easy. All are simply different perspectives of the differently-abled.
I am a quadriplegic wheelchair user with cerebral palsy who uses speech and ASL due to sensory processing disorder.
I am also a speech-language pathologist who serves the Deaf and hearing. I am trilingual, speaking English, Spanish, and ASL.
I am not one of you or one of them, I am not Deaf or hearing, I am disabled and capable. I am simply ME!
As a mobility impaired, chronic-pain, arthritic woman of 60, I cannot agree more! All of my disabilities are ‘invisible’ unless I hbble around, with or without a cane.
It’s $ violated I feel when a nondisabled person asks (confrontationally, or not), “What’s wrong with you, anyway?”$
On a good day, I need close parking bc I may not be ok when I come out. And my multiple-surgery feet may fail me, even if my back or knees don’t. But I don’t think that’s a good answer .
“Pain,” I say. “What’s wrong with you, that you ask like that?”
Usually, I get an embarrassed non- answer, or a rude gesture. Sometimes, a real conversation. Or a “You, too?” and a sympathetic smile.
The invisible hierarchy extends to disabled veterans. But PTSD should not prevent you from walking in from the regular spots, like my granddaughter’s ex didn’t do (he was ‘traumatized’ by reading others’ experiencesas an HQ clerk!) .
Any DV plate, with or without placard, can take a disabled space. So can Putple Hearts from paper cuts doing paperwork while on duty, and they sometimes have more/closer spots than we do.
Sorry, these are pet peeves. The DV oversized pickup trucks taking up 75%+ of handicapped spaces, and knowing they are probably like Cathy’s ex, Jerome, pisses me off. Having to hobble past them on my broken feet using a cane or walker pisses me off. And having a to justify myself, not just to doctors, but to other patrons, pisses me off.
Thank for letting me vent. 8-p
Much love to you.
It reminds me of the “Our Minds are Fine” campaign I heard about. Some people’s minds are affected by disability and that doesn’t make them any less deserving of respect. That includes people who have a profound intellectual/developmental disability and can’t do things like driving, speaking, or maintaining hygiene. They’re human and they matter.
I work with students with disabilities (including, but not limited to Autism and Intellectual disabilities). Unfortunately, I see these dynamics in my classroom regularly. I do my best to challenge comments and bullying of this nature, but it can be an uphill climb.
As someone who’s experienced the beauty of being connected to disability community in more recent years, I want that for my students, too.
If you or anyone reading this knows of good resources for fostering disability community and challenging hierarchy that are accessible to kids, I’d love to know about them!