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Thursday, August 3, 2017

In the Age of Mainstreaming, Being With Other Disabled Folks Is Still Important

In my experience as a student with cerebral palsy in a mainstream school, I noticed how often educators discuss the benefits of disabled students spending time with their “typical peers”. Certainly, the opportunity to go to school alongside non-disabled classmates is important because it is valuable to be among all kinds of people. School should be as close as it can be to a microcosm of a larger, diverse community. But as mainstreaming has become “the golden rule,” I have observed that “inclusion” often comes at the price of many disabled students never encountering another student with a disability in their entire school careers. When decoded, “inclusive education” has come to mean for so many disabled folks, being the only student (or one of the few students) with a disability in the class, in the grade, or sometimes in the whole school. In elementary school, I was the only student with a physical disability. In high school, I was one of just three students with a physical disability and the only student using a power wheelchair. I exceled academically in my classes and people were generally kind to me. According to the tenets of inclusion, I am the ultimate “mainstreaming success.”

But no one ever talks about the isolation that comes with being one of the “only ones” in your situation. No one talks about how lonely it is when other kids are planning their after-prom parties and weekend underage drinking soirees while you are mentally measuring out how many ounces of cranberry juice you can drink at lunch in order to get help using the bathroom at a time that doesn’t cause you to miss class. While you are silently praying that your bladder doesn’t let go before that convenient time. While you are wondering if your desk will even be set up on the first day of school or if you will instead have to awkwardly park your wheelchair in an empty space at the front of the room. Educators, with great intentions, have begun to focus so much on the “enrichment” that comes with being alongside “typical peers,” that they often forget to consider the tremendous value that disabled youth experience when they have the chance to be alongside other disabled youth.

It’s simple if you think about it. When you are the one who is “different” most of the time, there’s something joyful about seeing another person who looks like you, who knows what it’s like to live in a disabled body. While disabled people do not automatically befriend one another, I believe we share a certain kinship that comes with common experiences. I was lucky to grow up with parents who valued helping me meet and spend time with other young people who had all types of disabilities. Some of those people are my friends. Some of them are not. Disabled people, like all others, represent the entire spectrum of human qualities, good and bad. But I’ve learned to appreciate each of those people, because at the end of the day, we share so much. We all know what it feels like to encounter discrimination. We know the “paratransit blues”. We can swap stories about waiting for hours in the orthopedic surgeon’s office. We can swoon over the new line of colors for power wheelchairs. I grew up always knowing that others with disabilities were out there, and that I was never alone on the topsy- turvy journey of being a young person with a disability. For that, I am forever grateful.

But it breaks my heart to know that many others aren’t so lucky. The extreme emphasis on “mainstreaming” in our culture often sends the message that the most “successful” disabled kids are always surrounded by “typical” peers. The fewer programs for disabled kids they join, the better, says society. The more they shun the markers of disability, the more gold stars will land on their shirts. The tragedy of this message is it implies that it’s not OK to be with people who are also disabled, because in this view, to be Included is to proclaim that you are not one of “those kids.” Think about how absurd it is to deem a child “so well adjusted!” for avoiding other disabled people. Doing so teaches disabled kids to internalize the ableism they tell their non-disabled peers to challenge. It’s not enough to ask non-disabled people to end their ableist practices if we do not strive to end the ableism disabled folks have been socialized to show towards each other. In striving to do this, we must also resist what I will call the “impairment hierarchy,” which often results in people with physical disabilities insisting that they are “not like” people with cognitive disabilities, people with cognitive disabilities declaring that they are “not like” those with psychiatric disabilities, and so on. We must all work together for justice without perpetuating among ourselves the prejudices we expect non-disabled people to erase.

For the entirety of my “free and appropriate public education,” I rode the short bus. I use the term not in a disparaging manner, but in an affectionate one. While the bus itself is something of a symbol of oppression, the grand contradiction is that for me, it was also one of power. In the hot, definitely hazardous stank of that ancient yellow school bus, I often experienced the peace that I imagine a gay person feels upon walking into a gay bar. I was safe, certainly not from crappy tie downs or detached mufflers, but from the pangs of loneliness that come with being “different” all day. I was free to moan about how awful it is when your muscles are too tight to let you pee without worrying about making people uncomfortable. I could complain about my parade of incompetent aides without having to explain why I was upset. The bus was not a place for educators to emphasize how “they didn’t even think of me as disabled!” On that bus, I realized that I am disabled, and owning that doesn’t make me inferior.

I experienced that same peace during my summers at a camp for kids with physical disabilities. My fellow former campers, who I think of as “siblings by circumstance” are a tremendous support system for me. They share the frustrations of being unable to drive. They know too well what it’s like to restrict your fluids for lack of an accessible bathroom. What it’s like to know grief at an early age and to sit with the brutal truth that the same disabilities which strengthen us and bring us together can also end lives too soon. But it’s not just challenges we share. There are also joys, only fully understood by those in the “same boat.” The ecstatic rush of finding the right job after facing repeated discrimination. The incredible freedom of being told that as of the first day of tenth grade, you no longer need a 1:1 aide constantly acting as your shadow. The moment when you’re dancing with a group of disabled folks and you realize in some ways, you are not “just like” your “typical” peers… but you truly don’t give a hoot. These mutual experiences are ties that bind.

What I’ve learned is that mainstream education has been a privilege, especially given that the option was denied to disabled students barely older than I am. I have family members and friends without disabilities who I cherish and treasure with all my heart. But in the age of mainstreaming, we cannot interpret inclusion to mean pushing our disabled peers away. We need people without disabilities. We need people with disabilities. Ultimately, we just need people. What a novel concept.


5 comments:

  1. Exactly. I'm a college kid with hearing loss and I've only ever met 2 people my age with hearing loss in the past 14 years of living with it. I'm one of few disabled people (that I know)at my college (and the only one with hearing loss) and sometimes it's just nice to talk to people who understand things like how annoying disability services can be and how frustrating it is when assistive technology doesn't work. I was always mainstreamed and would not have wanted it any other way. But as I've gotten older I find myself wishing I had better connections to the disability community.

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  2. Thank you for your kind words on my piece.

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  3. I like your article, but could you please avoid using mainstreaming and inclusive education interchangeably? Inclusive education is it's own educational model, and when you use them both interchangeably, you are saying bad things about this model and I think it has a good chance of working. Inclusive schools like the Swift Learning Center are rare in the US, but it is not the same experience as mainstreaming, or at least it shouldn't be if the model is working correctly.

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  4. This is so beautifully written, Kathleen. I think it is safe to say that your feelings about your own childhood experiences can be extrapolated to include adults, as well. There is tremendous push to minimize facility-based services for adults with intellectual / developmental disabilities, particularly when it comes to employment. This can mean that some people go days without interacting with others who share their experiences and understandings. I often think of how I would feel if I had to spend my days with CEOs or tenured professors; I'm pretty sure I would miss being with people with whom I could relate, and with whom I could feel comfortable being my true self. Like most things, there should be a balance. Anyway, thank you for sharing; this is a wonderful piece.

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  5. Interesting post. My "mainstream" grade school experience was devoid of disabled students but my college is the complete opposite. It's like "Disability central" in there. Even most of the professors are disabled. And I didn't even know that when I applied LOL.

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