As July draws to a close, I am reflecting on Disability Pride Month.
Yesterday, I was drawn into a discussion about trauma-informed practices in education at a social gathering. As usual, I found myself passionately defending the rights of disabled students in the United States and despaired over the lack of resources to support them appropriately.
My new friend, a former social worker, agreed with me. After telling me how much of their work had been spent managing cases and how much of their time on the clock had been depleted by tireless advocacy and running into brick wall after brick wall, they brought up how much of the systemic issues in education boil down to the medical model of disability.
The medical model of disability is so deeply ingrained in our society that it is responsible for a tremendous amount of inherent ableism and internalized ableism that prevents people from getting the help they desperately need. The medical model teaches us that disability is something to be fixed, not supported. There is a tremendous amount of tragedy narrative in the medical model that keeps those with disabilities oppressed due to the perspective of being seen as a burden. As such, their autonomy is often limited or taken away, and disabled people are infantilized rather than treated as equals.
In education, we see this manifest in denials of requested supports on IEPs, lack of time in general education classrooms, seclusion rooms, and the use of restraint. As I said yesterday, “People don’t understand that it’s legal to abuse children in schools. Just because a district or school has a great ‘rating’ is meaningless.” When I put my daughter’s case of restraint before the Office of Civil Rights, I was told by an attorney working on the case that they “only investigate cases of repeated restraint.”
I looked at my friend, a former social worker, and said, “Now, you tell me: if I had been the one who put those bruises on my daughter — one time — what would have happened? Take away the fact that I am a white woman of privilege — then what? But a school can do this legally and without repercussion to the most vulnerable of our nation’s population: disabled children.”
Moving away from the medical model of disability is absolutely essential to increasing our children’s safety and well-being in schools. This requires a systemic change in education, owning the barriers that prevent people with disabilities from attaining the accommodations that allow them to thrive.
We must move toward the social model of disability, which focuses on the barriers in society that limit the full participation of disabled people.
When I think about what we can do to move toward that social model, I remember a trip to the aquarium with my kids two years ago. Going anywhere with all three of my children is always an adventure, but in this case, it was nothing short of a sensory nightmare. The loud noise of what seemed like thousands of children echoing off every surface, the anxiety of worrying about my daughter eloping, the smells — it was a lot to deal with. This experience made me realize the importance of understanding and accommodating the needs of disabled individuals in public spaces.
I brought our summer childcare provider along with us to help with the elopement and keep myself regulated. Because Alice had the tendency to zoom off, I asked the provider to be sure to hold her hand at all times to ensure her safety.
Unfortunately, I watched as this had the opposite effect of what I intended. Alice kept screaming and dropping to the ground, becoming more distressed. As I took the boys to see the stingrays, I watched with confusion as Alice lay in the middle of the floor, upset. Our provider was calm but did not let go, as I had instructed. The place was swarming with people, and we were terrified Alice would be swallowed up in the crowd.
As I watched my daughter’s body move, I started to translate what she was unable to say.
I did something that terrified me. “Let her go,” I said.
Our provider was equally terrified by my suggestion. People were pressed against the walls, running past, squeezing past — the thought of someone grabbing Alice was at the top of our minds.
But she did as I asked and let go of her hand.
Alice leaped up and jumped up and down multiple times before running straight to the stingray tank where her brothers stood, touching the stingrays.
My insides were in knots, wondering how people would react to seeing a child express herself with her body instead of speaking. But I forced myself to stand to the side and use my own body to convey the support needed without words and without holding her hand.
Alice was being led to the stingrays when she kept dropping to the ground, but she desired the autonomy of going on her own without having her hand held.
Why?
She wanted to jump.
She wanted to flap.
She wanted to squeal.
She wanted to stim.
She wanted to express, in her own way, how happy she was to see a stingray for the first time.
As her mom, my job was to amplify that with my body language. I stood by, showing my pride in her happiness; it’s impossible not to. When Alice is happy, it’s simply contagious. Her entire body pulses with joy — who wouldn’t be able to stop moving because of that? I noticed everyone around her smiling, happy for her, not bothered, confused, or otherwise displaying ableism. Some looked at me first and then followed my example. Not one person in the crowded room showed anything but happiness at seeing a little girl express herself. No one looked to the disabled child as a burden, something to be fixed, cured, or tragic. If anything, she made their day better and more fulfilling.
This is the normalization of disability we need to support as a society. I had been hindering her, not supporting her, by assuming too much and not listening to her needs. While she couldn’t, at that point, tell me directly what she needed, I could have done a better job tuning into her needs. My assumptions were based on fears, anxiety, and the medical model of disability.
Worse, I led her into a situation without preparing for her authentic inclusion. Had I thought about what accommodations she would need to enjoy the aquarium as much as her brothers, she wouldn’t have dropped to the floor in distress and frustration.
After she followed her brothers’ example and stuck her hand in to feel the slimy skin of the stingray as it slid past, she yelled, “It feels like a wet gummy bear!”
Then, after jumping with excitement for another minute, she came over to me, put her hand in mine, and was ready to continue with autonomy.
Her next move was to go straight into the room with the sharks and dance in front of the Great Whites while singing “Baby Shark.” That is a story for another day, but the point is that we have so much work to do as a society before my child can navigate systems as easily as she was able to navigate the aquarium with my help that day.
My social worker friend is right: the amount of time spent advocating is one of the many systemic barriers families with disabled children face. A lack of accommodations is another. Every little thing we do in society to create safe spaces and normalize disabilities will help dismantle these barriers so that the social model of disability can edge out the dysfunctional medical model.
