When I was a kid, being around other disabled kids was a given. In my school district, there was one special education classroom for all of the grades. A few kids would come and go throughout the day, but most were there, with our own two teachers and our own specially designed class equipment, all day. I left for band and P.E., then came back to spend the rest of the day in our little self-contained world where we each had our own curriculum and the teachers floated between us, giving us each the help that we needed to understand the work.

We had a jumbled assortment of physical, intellectual, and sensory-social disabilities, many of us with more than one of the above at once, but we shared common experiences as young people learning not only our academic requirements, but what would be required of us in order to work around the ways our bodies and minds were different from those of the other kids, the kids in the “mainstream” classes. Some of my best memories from growing up came from this room, where part of relating to each other was learning the different ways each of us moved through the world; the adaptations and accommodations that each of us would need in order to interact and form friendships.

I didn’t know it at the time, but I was getting an education most able-bodied and neurotypical people don’t get – and while I was learning the maps of each of the people I connected with, they were learning mine. I wouldn’t truly understand its value until it was gone, but those classrooms were the first place that I was surrounded by people who truly understood and accepted me for who I was.

When I competed in the Special Olympics, I was pulled in by a feeling of almost radical acceptance from both my team and the others we competed with. We supported each other, we helped each other, we cheered each other on. When I flapped my hands in excitement after making a winning throw, nobody laughed or mimicked me. And when I visited a camp designed especially for disabled people, while there were some attitudes in the philosophy of the place that struck me as a little patronizing or inspiration-porny at moments, I couldn’t deny that there was something healing about being in a room of disabled and neurodivergent people dancing in whatever way each of us defined that, or in hiking through the woods with a fellow autistic person and communicating nonverbally without anyone breaking the comfortable silence. The moments I spent in the company of other disabled people – especially in those rare moments out from under the eyes of the abled adults supervising us, when it was really just us – shaped the way I saw my world, and the person I turned out to be.

 

The Pros and Cons of Mainstreaming

That’s why, as I got older and became involved in disability advocacy and activism, I started to feel conflicted about the direction in which I noticed programs and services for disabled people seemed to be heading. Suddenly, the focus was on “mainstreaming,” the idea of integrating disabled folks into the world of able-bodied and neurotypical people as much as possible. Self-contained special education classrooms, like the ones I grew up in, were becoming less common; kids were now being given supports to help them attend the “regular” classes at their schools. Day programs were being phased out in favor of mentorship programs to help people access the greater community.

On the one hand, doing away with institutionalized barriers and isolated programs is progress, and it is important. There is a need to demand space for disabled people in our society, and an end to expecting us to be hidden away for the sake of other people’s comfort.

More Radical Reads: 7 Things I’m Tired of Hearing as a Disabled Person & What to Say Instead

Creating Supportive Spaces to Talk About Our Disabled Bodies

But it becomes a problem when making space for everyone in a bigger community comes at the cost of dissolving marginalized communities. When we stop setting aside exclusive spaces for disabled people – especially disabled youth – we take away the worlds in which it is safe to talk about the ways our own bodies and brains – specifically – function and malfunction, with other people who can understand and relate on our level. There is joy in sharing even the challenging and embarrassing parts of navigating the world in a disabled body with people who can relate, revel, and even commiserate. When we place the emphasis on integrating disabled folks, on an individual basis, into broader communities, we ignore the vital and vibrant disability communities that are dissolved in the process.

As we move forward into a future where we all are more intentional and inclusive in the ways we form our communities, and we work to ensure that disabled people have a place at the table without being relegated to the next room, it’s important not to forget the need for disabled people to maintain our own community spaces. As the institutions that once kept us separate are dismantled, it’s necessary to our survival that we make a point of replacing them with safe spaces where we can connect over our shared experiences; where existing apart from abled people is not about us being excluded or pushed into the shadows, but about sharing and growing together.

The things that I have learned from other disabled people are among the most important things I know, whether it’s the friend who taught me that salad tongs make great grabbers for reaching things from a wheelchair or the disabled actress I met at a fantasy convention whose stories of self-acceptance and healing stirred hope in me that I could pursue my own dreams despite the very real challenges that being disabled and chronically ill pose for people in creative fields. I’ve learned hacks for map apps to find accessible routes, tricks for carrying things while using mobility aids, places to buy stim toys that look like nice jewelry so they’re inconspicuous in professional settings. All from other disabled folks. I don’t want to sacrifice the networks that have given me the tools I’ve used to build a life that feels manageable and goals that feel possible. I want them to be there for the next generation of young disabled people trying to find their way.

More Radical Reads: 7 Things I’m Tired of Hearing as a Disabled Person & What to Say Instead

As the insulated worlds of the old system fall away, I want us to remember that disabled folks having our own spaces to empower each other is still necessary. I want to replace the old institutional model, where our learning to prioritize and accommodate our needs sometimes meant defying those who thought they knew what was best for us, with one where we direct the conversation and the structure of our new intentional communities ourselves. I want us to grow together, create together, learn about ourselves and each other and form connections through our shared pain and joy, struggles and triumphs. I think it’s possible for us to move into mainstream spaces and take advantage of opportunities that have, for too long, been closed off to us, without erasing the systems of support that we built among ourselves when we had no other choice. Above all, I want people to understand that, while disabled people are important to the greater community, our own communities remain important too.

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