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.
