What Medical Ableism Has to Do with Inclusive Education

I received news the other day that another of my former students had died. Over the years as a self-contained special education teacher, I was probably the direct case manager of a few dozen students. A relatively small number in the world of education, due to the case number limits of self-contained classrooms and relatively low turnover year to year. But even with that small number, three of my former students with developmental disabilities have passed away unexpectedly before they turned 18. 

While the direct circumstances surrounding their deaths differ, each story unfolded within a healthcare system where medical ableism remains pervasive for people with developmental and intellectual disabilities. It's the same medical ableism that required my brother to undergo a full-day procedure last month instead of receiving the simple preventative treatments he had needed over the years.

There are countless stories of medical ableism. Here is an article from The Arc highlighting some stories, including one in Washington state where doctors told a mom to a child with Down Syndrome that he “isn’t worth helping… isn’t worth saving.” While my work is not directly tied to the medical field, the link between my work in inclusive and accessible education and deaths due to medical ableism is immediate to me. 

A nondisabled doctor who never experienced disabled people as a part of their community will not suddenly view their disabled patients as equal and worthy members. A neurodivergent student who has never received accessible and appropriate reading instruction will not become the doctor that neurodivergent patients can rely on. A person who has never communicated with someone through AAC will not all of a sudden become a doctor who believes a nonspeaker can accurately communicate their experience. 

Children, from the time they are 5 years old, are funneled into self-contained “life skills” programs where academics are put on hold because adults (sometimes after just a document review or mere minutes of meeting in person) determine they aren’t capable of learning academics. Other children are placed in self-contained classrooms where teachers are left to piece together academics through Teachers Pay Teachers resources and worksheets, an indictment of a system that fails to provide clarity on what instruction should look like in these settings. And when I ask schools and districts how they determine who is eligible for these programs, almost 100% of the time I’m met with some vague language and a kind of shrug. 

But when I walk into one of these classrooms, I know exactly who I will see. Nonspeakers or students with unreliable speech. Students who stim in a way that’s outside of the norm. Students who don’t look like the students that belong in a typical classroom. 

And then we’re surprised that a doctor sees that same look and says, “He isn’t worth helping.” We taught him that. 

The systemic undereducation of students with developmental disabilities and the premature deaths caused by medical ableism are all symptoms of the same rot. It’s why my work always begins with examining our mental models around disability. Left unexamined, our mental models perpetuate this deeply rooted system of dehumanization, even when we use the language of inclusion and celebration of neurodiversity. 

I don’t have all the answers, far from it, but I hope my work can slowly chip away at the systems that lead to these outcomes. This kind of work can feel overwhelming at times (most of the time), but I’ve recently had the pleasure of partnering with some school leaders that are dedicated to making their schools and communities a more inclusive place and putting in the hard work that it takes to get there. They’re asking the hard questions and getting curious about what needs to change. They’re shifting their mental models, supporting their staff in doing the same, and giving them the time and resources to shift their practice to actually support the disabled students in their schools. While the heaviness of knowing how many students we’re currently failing is crushing, finding and working alongside others who are dedicated to this work gives me hope that, just maybe, it won’t be this way forever.