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