the social model of disability in autism and more, optimist jenna dot com

The Social Model of Disability in Autism and More

What causes disability? When a disabled person struggles with a task, who is to blame? There is more than one way to answer these questions. We have a medical lens and a social lens. While the medical one has been popular, the social model of disability offers a new way of seeing autism and other conditions.

The medical model tells a story you’ve heard before. “Something is wrong with a disabled person. They are not healthy, so they can’t do some things. Maybe a doctor can cure or help them. But maybe there is no hope for them.”

It’s a sad story, isn’t it?

Some people felt that story didn’t frame things right. So they came up with a new way of framing it: the social model.

The social model sees differences in ability as normal. But society only makes it easy for some people. It disables others by making inclusion harder for them.

Does this make sense? Let’s use height as an example.

Height and Differences in Ability

Human biodiversity showing three people: an autistic musician with perfect pitch, a man with dwarfism and ADHD, and a double-jointed girl who is good at math
Humans come with different abilities. (Instagram)

I’m shorter than average by a few inches. I can’t reach the top shelf in the kitchen. I would walk past a big twig hanging from a tree on a piece of fishing line, but it was too high for me to grab. But my dad can reach the top shelf and he jumped to pull that one twig down.

This is a difference in ability. My dad can do things I can’t do. That’s just a fact.

But my height is not a disability. I can climb on a chair to reach the top shelf. When I saw a twig stuck in a tree in our yard, I knocked it down with a rake. I rarely face problems because of my height, and when I do, there’s almost always an easy answer. (Well, the rake thing was a little tricky.)

Besides, tall people have their own problems. My dad says sometimes the foot of the bed can be too tight on his feet. I always have lots of room in beds. My dad doesn’t fit comfortably in small places like airplane seats or the closet under the stairs, but I do. (Yes, I’m the mythical person airplane seats were designed for! I’m shorter than 7/8 of the adult population!)

My dad and I have different heights and different abilities. Some things inconvenience us. But that’s not a disability. We don’t struggle with size-related issues at grocery stores, jobs, team sports, or anything else. We can take part in everyday life without barriers.

Imagining a Different World

You are probably 5-6 feet tall, maybe a tiny bit above or below that. Let’s imagine that you were born into a different society.

In this world, adults are 3-4 feet tall. Everyone has dwarfism. But since it’s the norm, it’s what the world is built for.

Most ceilings are 5 feet high. Desks, cars, clothes, beds, and everything work for people up to about 4 feet tall. And people who are 4’2″ will need to buy specialty “tall beds.”

Is someone three feet high? That’s not a problem. They can reach the top shelf in the grocery store. Maybe not the kitchen, but there are stools for that.

But then there’s you. You have “giantism.” The doctors warned you’d have a life of joint pain caused by bending over. And your family, in tears, turned to giantism groups to learn about your future. Is there a cure to fix your size? Surgery might help, but you’re giant forever.

Your neck always hurts because you can’t walk indoors without bending over. You don’t fit in your friends’ cars. People stare. You won’t enter some rooms because it would feel so awkward squeezing through the tiny door. Restaurants rarely work well. Strangers talk slowly to you because they think you’re not smart.

Imagine that. How would it feel? What couldn’t you do?

In this world, you are disabled. Your body is different from others and society isn’t built to include that difference.

The Social Model of Disability and Autism

“Red” is the online nickname for an autistic person in my family. Their height is within the normal adult range. But they’re disabled.

Red is scared of loud school assemblies, loud bathroom hand dryers, and sports car engines revving. As a kid, Red struggled to befriend the mysterious non-autistic people. And they had a hard time being pushed to meet milestones (like learning to drive) on a “normal” timeline.

If we follow the social model of disability, we don’t say Red’s autism is the problem. Instead, we say the problem is society failing to include Red’s differences and needs.

What if society worked differently?

Let’s take away the loud sports cars and the expectation that you can drive at 16. No more rules about wearing itchy formal clothing, no more ear-destroying hand dryers, and no more expectations of eye contact. If you want to work from home, then you can. If you want to rock back and forth, then that’s fine.

We could design a new world in which autism is not a disability. Suddenly, Red’s autism is “normal” the way my shortness or Dad’s tallness is normal. Sure, we know it’s there, and we can label it. But it’s not a problem. It’s just part of life.

Red wasn’t born broken. They were born into a society that demands things different from what they can do.

And that means, if we changed society enough, Red wouldn’t be disabled anymore.

The Social Model of Disability Beyond Autism

drawing saying pride must be accessible. The art shows a bisexual wheelchair user who can't climb the steps and a transgender person runs from the loud music
How do we help the wheelchair user: leg surgery or a ramp? (Instagram)

Of course, you might say Red is an “easy” one to imagine helping. They’re smart, they’re employed, and they did learn to drive eventually.

So, let’s look at someone different. My sister, Katie, has Down syndrome. She can’t drive, work a classic office job, or read at a high school level.

You might think, “Isn’t that a big inability? How could society hope to make that not a disability?”

The funny thing about that is Down syndrome wasn’t always as disabling as it is today. Let’s time warp my family back to the middle ages. We’ll assume we have the same abilities as we do today.

The year is 1308 (or something) and we live on a farm. Katie milks cows, weeds the fields, and gathers firewood while singing loudly. None of these things require a big IQ. Meanwhile, Red wanders far and wide with their flock of sheep, making eye contact with no one. Katie’s face might look different and Red’s stimming might be “odd,” but they get by just fine. They can work, chat, and live normal lives. They’re not disabled.

Society didn’t always ask the same things of us. So, our definitions of disability changed. And as society asked more of us, more people became disabled.

I’m not saying we should go back to the middle ages. I like running water, modern medicine, and the internet. (Red and Katie do too.) Life has mostly improved since then.

The social model just explains what changed for disabled people. It also shares ideas for what we can change.

I don’t know if we can ever get rid of disability completely. But there’s a lot we can do to reduce it.

So, Is the Medical Model Useless?

Does this mean doctors should throw their degrees in the trash and walk away? Of course not. Broken legs need healing. Cancer needs curing.

Let’s say that on one hand, we have people with dwarfism. Often, there’s nothing “wrong” with them. They’re just born short. Fix society so they can do everyday things and bam! It becomes a difference, not a disability.

But then there are things like cancer and multiple sclerosis. Someone is healthy (or healthier) at first and then they get sick. No one is going to say “just build some wheelchair ramps.” I mean, we should, but we should find a cure too.

Doctors shouldn’t be there to make you “normal” at any cost. Instead, they should help with your unique needs.

Where do you draw the line in the middle? What do we accommodate and what do we cure? Different people will say different things.

Asking My Family

Let’s hear from Katie and Red. “If you had a magic wand that could cure diseases and disabilities, what would you cure in yourself?”

Katie: I think have to be myself… I think it’s OK to be different and… Right! I forgot to add the booster. Booster would be nice. A booster makes you extra safe to get rid of disease and you have to get rid of the COVID-19.

Me: So, it can get rid of disabilities and diseases. Would you get rid of your Down syndrome or keep it?

Katie: Keep it. This is who you are. Have to keep your special gift.

Katie doesn’t want to change herself. She struggles, but she doesn’t think she needs fixing. She wants you to know that.

Red typed this:

First, I’d check if the wand has a limited number of uses. If so, I give it to a children’s hospital for terminal patients because that’s more important.

But if it’s unlimited, I will use it on myself. Boop! No more anxiety. Boop! No more sensory woes. Give me motor skills that work better too. Also, if I have any surprise diseases, get rid of those. Then I share the wand with my family and then we give it to the hospital and have a party.

But I am not getting rid of autism because I don’t want a whole new brain. I don’t want to look in the mirror and not know whose eyes those are. I want a better life while being the me I’ve always known.

Red sees autism as part of themselves while anxiety and sensory issues are bad add-ons. Get rid of the stressors and their problems lessen. But the autism is here to stay.

Disease or Difference: Who Chooses?

Katie thinks of her Down syndrome as a difference. Meanwhile, Red would cure some things and keep others.

Other people may see their own lives differently. Is deafness something to cure or something to appreciate? Do you get rid of ADHD or embrace its uniqueness? Or do you split apart its symptoms and keep some while discarding others?

Are you disabled by your body or disabled by society? How much do we change the world and how much do we change the person?

These are big questions. If anyone can answer them, it’s the people who are living those lives.

Using the Social Model of Disability

Red says autistic advocacy must center autistic voices
Who knows what autistic people need? Autistic people do. Listen up! (Instagram)

Anyway, disability isn’t going anywhere anytime soon. Babies with Down syndrome keep being born. Accidents and diseases affect people. And there is no magic wand to make everyone alike in ability.

The social model can help us handle this reality. If people with different needs exist, then how do we help with that? What do we do?

We try to include them. We start making room for their needs. Instead of shutting them out, we ask “how can we let them in?”

And that process starts by asking them.

The social model of disability gives us a new way of looking at things, from autism to wheelchair use. Instead of telling them their minds or bodies must be changed at all costs, we look to change society.

We all have different abilities. I’m short and my dad is tall. Red is autistic and Katie has Down syndrome. Society works with some of these things but not all of them.

We can reduce disability by reducing the ways society disables people. And that means starting with listening and making an effort.

What can we change?

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