When I was a kid, my mom worked a lot with other parents of children with disabilities. She taught them to advocate for their children. I grew familiar with stories about fighting for the accommodations needed to make sure a child “survived and thrived” in school. And even though every parent loves their child exactly as they are—they are still working to raise the bar, the way any parent is. The thing is, parents have a comparison. They have experienced life as an able-bodied person. Maybe they even have other, able-bodied children. Thus, their advocacy becomes about making sure their child has “the same opportunities as any child” and “isn’t seen any differently” than an able-bodied (or “typical”) child would be.
Growing up in this environment
taught me a lot about standing up for myself. It taught me that I am entitled
to accommodation when I need it. That the playing field can be, and should be,
evened. But it did not prepare me for the difference between advocacy and
self-advocacy.
I don’t have an able-bodied life to
compare mine to, and I no longer have my parents around all the time to make up
for the basic aspects of living that my disability makes difficult. When your
body makes it difficult to cook, clean or walk to the T, accommodation becomes
less about leveling the playing field, and more about getting through the day.
Advocacy isn’t about fancy things, like new equipment that will make you the
envy of your classmates. It’s about telling your roommates that you can’t lug
the trash bag down the stairs. It’s about having to admit that, in fact, your
life is different. And not in the, “all-of
our-lives-are-different,” or “celebrate uniqueness” way parents talk about. In
a very real way, day-to-day living is harder than it is for most people.
One of the elements that always
bothered me about parent advocates were the speeches where some parent would
talk about mourning the expectations they had for their child. Think of it this
way: A kid with cerebral palsy might not play Major League Baseball. But that
able-bodied kid the parent dreamed of might not have either. Who knows, the
child with CP might. Or they might go on to be a baseball commentator. The
possibilities are there.
That’s what parents have to focus
on. Their advocacy opens the door for possibilities. That way, when their kid
is an adult struggling with the day-to-day tasks of daily living, they’re
already on the path toward achievement.
I know that I can do whatever I want
to do. My parents ingrained that in me. They didn’t tell me it’d be this
difficult. I’ve had to learn that for myself. And I think that’s as it should
be.
- Authored by Chelsey Blair Kendig
