(in 14 seconds and why it matters)

What is the social model of disability? I’ll explain it in 14 seconds. It is a pretty short period of time. 14 seconds. Less than a quarter of a minute. Could you wait 14 seconds to give someone a chance to talk or respond to a question? It isn’t a casual question. The average gap between “typical” talkers is 2 seconds. I think I probably last …..maybe a second… MAYBE. But, what if you have a communication disability? While in the middle of another study, some researchers simply waited and listened to a set of 12 young adolescents who were identified as having “minimal verbal skills” and identified as with autism or other developmental disabilities. All the researchers did was wait. Wait and give these young people a chance to speak at their own pace. No hurrying. No interventions. No therapy. No interruptions. Just wait.

And the researchers found that just by waiting these kids with “minimal verbal skills” could communicate conversationally just fine. They weren’t incapable of articulate speech or thoughtful ideas, they just needed some time. Can you just wait for 14 seconds? We’re going to find out right now. Just listen. Don’t speed up the episode. Don’t DO anything. Just listen. Here we go….

(14 second wait)

How did you hold up? It was hard for me to sit there saying nothing. Doing nothing. Imagine being on the other side of that experience. That ALL you needed was for someone to wait for 14 seconds for YOU to gather your thoughts and say what you want to say. Just 12 seconds of patience between being considered normal and being considered disabled… Would you get angry? Frustrated? I’m sure you’ve been in a conversation where someone won’t let you get a word in edgewise.

Imagine work, school, friendships, family, everything if you just needed those 14 seconds.

oh, and that was the average… that means half of the group needed MORE time… but, if you give it to them, they can communicate just fine.

Welcome to the social model of disability.

See Show Notes.

I’m your host, Steven Davis and welcome to episode 9 of Disability Democracy. This weekly podcast is about practical actions that YOU can take – to make a difference in your community. The goal of Disability Democracy is to accelerate the disability community revolution. Find out more at disabilitydemocracy.org.

Disability studies academics talk about “the medical model of disability” and the “social model of disability”. The two models are much more than academic. The medical model and social model are actually useful ways to understand what disability is and how it is experienced.

First, the medical model of disability. It is usually pretty straightforward and what we tend to think of when we think about disability.

The medical model of disability sees disability as an illness to be “diagnosed” and “treated”… “Cure” or “care” as the scholars say when they are being a bit flip… and our healthcare system favors, in many, many ways “cure” treatments to “care treatments….but we’ll come back to that later.

What is interesting is that medical diagnosis is itself … actually social. We interpret symptoms differently depended on someone’s diagnosis…. And you may wind up with a different diagnosis if you go to a typical doctor, a neurologist, or a psychologist. In Martha Leary and Anne Donnellan’s book “Autism: Sensory-Movement Differences and Diversity” the authors group descriptions of symptoms for Parkinsons Disease, Tourrets Syndrome, and Autism together… and, if you didn’t know which one you were looking at, you wouldn’t know which symptom went with which diagnosis.

This isn’t just a clinical issue, it affects everything. If an “emotional outburst” is associated with a disease or neurological condition, it can be socially accepted as a symptom… but if it is associated with a developmental disability like autism, it is a “behavior” to be “managed”.

This is the essence of the social model of disability.

The “social model of disability” argues that disability is created by a society. The social model argues that disability exists because we’ve built it – intentionally or not. The social model of disability is pervasive. It exists at the interpersonal level – simply waiting long enough to give someone a chance to speak or dealing with our reactions to different physical appearance, the communal level, and so on all the way up to our culture and public and private systems.

And, if you are disabled, it shapes your life very day.

My most obvious experience of disability comes via my autistic son.

Now, if you are a parent, or have friends with kids, you probably know kids who have something “extra’ in their lives…

Maybe they are an aspiring athlete or musician. Or they have an illness or injury. I have a friend now whose son is a potentially professional baseball player and an old friend whose daughter was a very serious violinist.

It is something that parents don’t really expect, but, you’ve seen it, they deal with it. So does everyone around them. They adapt.

Autism itself is kind of the same.

It is a something extra in our lives… it has definitely makes things different …. But autism doesn’t cause our family major stress or financial concern.

However, the social model – really the social construct – of disability is kind of a nightmare.

And it is an insane feedback loop.

You experience the discomfort that others have with your child’s disability, so you are less social… or you project your concern with their potential discomfort and the result is the same.

You don’t just send your kid off to school, you deal with “special education”. A whole system within our public schools that seems like a crazy cross of Alice in Wonderland, Catch-22 and 1984.

Healthcare that doesn’t seem to be about delivering treatment, but delivering minutes. Endless forms, surveys, applications, appeals, …

It is exhausting.

Not the disability itself. Not autism.

Autism doesn’t create daily co-pays for therapy. Our healthcare system which is biased against any treatment that is “care’ based instead of cure. Heart surgery, cure (even if it costs tens of thousands of dollars), one co-pay. Therapy sessions, a care treatment that may only cost a couple of hundred dollars, but it has a co-pay every session.

This is a choice. Nothing forces therapy to cost families thousands of dollars a year.

We wrote the laws that said the minimum wage doesn’t apply to people with disabilities.

We designed our “assistance” programs for disabled adults so that they can’t work, can’t get married, can’t accumulate wealth like the rest of us or they’ll lose their supports that they need to live.

How would you like your health insurance to operate like that? Or social security?

Imagine this: You need Need heart surgery?

No problem. Get divorced. Quit your job. Sell all your assets. You have to be poor to get “covered heart surgery”. This is our system when you swap disability services (or even elder care) for heart surgery.

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If you looked at me or talked to me, you wouldn’t consider me disabled.

I don’t consider myself disabled.

But I have worn glasses since I was in first grade. My vision is pretty bad.

I didn’t think about the system for vision care until recently when my friends started telling my about their cheap glasses online.

My friends said – Hey Steve, you can get glasses for $50… wow…. I went to check it out.

It wasn’t $50 for me.

My glasses still cost 5 times that… probably more.

And I’ve been buying glasses every couple of years (or my parents did early on) for almost 50 years now.

That’s thousands and thousands of dollars.

I never even thought about it.

Why aren’t glasses covered in our standard health insurance in the US?

Not the fancy frames or features… just glasses?

You know, so people can see.

Shouldn’t we make sure EVERYONE can see affordably?

What is the return on investment for “universal eyecare”?

And it isn’t just vision.

I guess I’m falling apart. When we were trying to figure out what was up with my then 2 years old son, we had his hearing tested. He happily sat in my lap in this funky booth. He was responding to sounds and speakers spread around the room. He was having a good time. His body and face reacting to all sorts of sounds. His hearing was fine…. BUT, I realized I had a problem.

I needed hearing aids at 52.

If you don’t need hearing aids, you may not know it, but they are quite expensive. Just to start, they can be $1000 per ear and go up to more than $2500 per ear.

And they likely aren’t covered by your health insurance.

I was shocked.

I’ve had what I thought was good health insurance my whole life… and hearing aids aren’t covered.

At all.

People go without hearing aids – or even buy just one – because they are so expensive.

And, what is worse, is that there is actually a huge difference between the quality of hearing you get between a $1000 hearing aid and a $2500 hearing aid.

(I’m planning on doing an episode about buying hearing aids soon, bug me if I haven’t and you have questions)

Hearing shouldn’t be a luxury.

Vision shouldn’t be a privilege.

You hear complaints about lazy people not working, yet we have the tools to help people see, hear, live, and work. We intentionally financially, socially, and culturally penalize people for their differences.

Not just for “big D” disabilities like Downs Syndrome or Spinal Bifeda or Muscular Distrophy but for… near-sightedness and hearing loss.

It is what disabled activists call “ableism”.

It is the social model of disability.

It is all of us not even being willing to wait 14 seconds… for free, just to give another person a chance to speak.

This episode of Disability Democracy Radio was sponsored by Not Without Us. Not Without Us is a 501c4 mutual benefit corporation. Our goal is equality for all disabled adults and kids with disabilities. You can learn more about our work at notwithoutus.org. Our strategy is built on democratic action – through this podcast and our community at disabilitydemocracy.org, providing organizing support at diydarkmoney.com, training candidates for local office at GetElected.US, endorsing candidates, or directly working on issues.

We’d like to thank Ian McCullough and Debbie Dodge, for their contributions to Not Without Us. You can support Not Without Us with an annual, monthly or one-time donation at notwithoutus.org/join. If you have any questions or comments on this episode, visit disabilitydeomcracy.org – you can email us, leave a comment, or even a voice message. I’m Steven Davis and on behalf of Not Without Us, we think that democracy comes not from a vote every two years, but from the actions we can take every day.

 

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