Parenting a person with a disability is a unique experience. These parents need understanding, compassion, support, and healthy outlets for their emotions. I am not for one moment disputing this. However, I’ve noticed a disturbing trend when it comes to parents of PWDs.
Much of the narrative surrounding these parents focuses on how hard it is to raise, nurture, and care for a child with a disability and especially an adult with one. A lot of the acceptance rhetoric you see, focusing on accepting the emotions of the parent (s) rather than the persons with disabilities in their lives. Humorous blurbs say things like, “Oh, you’ve met one child with X disability? Please excuse me while I take notes, because clearly you’re an expert on my child.”
Again, disability is hard sometimes, for everyone involved. What I think the TAB world forgets though, is that at the end of the day, only the person with the disability knows what it’s like to live with it. Yes, that person’s family members need support, but where is similar support for the PWDs themselves?
You might remember that awhile back, we talked about how vital it is to respect the experiences of PWDs as their own experiences, not someone else’s. That’s still vital, but sometimes family members appropriate the experience, intentionally or not, because they’re so close. Parents, as the closest and most loving family members, are often the most guilty.
I’ve seen plenty of stories, articles, posts, and memes around the Internet that let parents of PWDs know, “We’re with you. We know how you feel” (even if the writers technically don’t because well, nobody can know how another person *really* feels until they’ve been there). These articles, stories, posts, and memes say things like:
-That face you make when somebody says they’re “sorry” your kid has autism.
-How you feel when your kid got through therapy without a meltdown (somebody jumping up and down cheering, dancing in the rain, whatever).
-It does not take a special person to raise a special needs child. Having a special needs child makes you special. (Not going into the flaws of this one; we’ve discussed the implications of “special” enough).
-My child with X disability taught me Y, Z, and A things about life/what life is all about.
I cannot emphasize enough, there is nothing wrong with any of this (except if you continue to refer to your child in ways that paint him or her as “less.”) But why is there a dearth of voices saying:
-I have a disability, and it teaches me X, Y, and Z–even when I don’t want to learn the lesson? (And on those days, I sometimes find the lesson is even more precious).
-That face you make when yet another person greets you with, “What’s wrong/what happened?”
-How you feel when your therapist/medical expert actually listens to you.
-It doesn’t take anything special to raise me. Just love me.
Thankfully, increasing numbers of parents and family members see disability as natural and beneficial to the world. For example, there are now “autism positive” communities throughout the Internet and the real world. Bravo for them, because they are speaking to PWDs’ experiences. They’re saying things like, “My child is different, not less. My disabled child grew up to be a disabled adult and should not be dismissed/forgotten. I am my child’s advocate/voice.”
Yet these communities are still speaking primarily with the voices of parents, and that is potentially harmful. Why? For a couple of reasons. One, when you constantly send the message, “The parent is the primary advocate for a child with a disability,” you may stunt self-advocacy. Parents are wonderful, but they are not always around. Disability or not, there comes a point when we all have to advocate for ourselves, and we need to be confident enough to do it.
Two, when disability-positive messages are focused solely on parents, they paint the parents as saints, heroes, and potential heroic martyrs. That cheats the parents out of being human, and it teaches children and adults with disabilities to regard themselves as “less.” As in, “I’m not the important one in this picture; my mom is. I don’t do important things, my dad does. My aunt and uncle have given up their whole lives to raise and nurture me. It’s hard, and I feel guilty that it’s hard.” That particular message often morphs into, “Why can’t I do more/be more? What can I do to fix myself? What can I do to make it up to my family, for having someone like me?” Over time, PWDs can learn to hate themselves (more on ther this month).
Finally, whether positive or negative, focusing all disability awareness/acceptance on parents silences PWDs’ voices. Therapists, teachers, and other “experts” do this all the time, but it’s potentially more harmful when a parent does it because he or she is the person’s first nurturer, supporter, and advocate.
I’ll give you an example. Let’s say Catherine and Raymond have raised Sawyer, a son with a disability (any disability; for our purposes let’s say it’s autism/ADD). Sawyer’s sister Jenna, who does not have disabilities, grew up watching her brother receive services, extra attention, and what have you. All three know the joys of having Sawyer in their lives, but they also know the hardships. So Catherine and Raymond decide to write a book about their experiences, consulting Jenna and/or Sawyer as needed.
On the surface, this is a good idea. The more voices that speak to the disability experience, the better. It could be a memorable family project that strengthens bonds. But there are three ways this book could go horribly wrong:
-The book leans too negative. Catherine and Raymond write constantly about their negative experiences, which may make Sawyer feel lousy. However, because those negative experiences are “truth,” the public may applaud the book, even if it paints disability in a negative light. Sawyer’s parents may hear things like, “You’re so brave! I could never do what you do. I’d tear my hair out if I had to live like that.”
This particular problem comes with a double standard. That is, let’s say the book leans negative. Sawyer knows only half (and maybe not even half) of the truth of his experience has been told, so he decides to write his own book. In it, he talks about the hardships he experienced as his family struggled with his autism/ADD. The public may accept that–or they may say things like, “How ungrateful! Your family took care of you when no one else would’ve. Why are you so mean?”
Yes, this happens. Parents and family members are allowed to say whatever they want about disability–but when PWDs express their feelings, it’s somehow “mean” or “unthankful.” (What? Double standard much)?
As for the other two ways this book could go wrong:
-It leans too positive/toward inspiration porn. The focus is not on family ties, Sawyer and Jenna growing up to be healthy people, or even Sawyer doing wonderful things on his own merit. Instead, the focus is on, “Look what a good job Raymond and Catherine did raising their special son.” Worst-case scenario, the parents may appropriate credit for everything positive Sawyer does, because after all he never would’ve been able to do them otherwise. (Yes, parental support is important, but we need to give our kids their own credit, disability or not).
-The book focuses more on Catherine, Raymond, and Jenna, as the “normal” people living with the disability, than Sawyer himself, who actually lives with it. Self-explanatory; once again the TAB family is presented as heroic, while Sawyer is presented as a “special gift” at best and a burden at worst.
Most parents love and nurture us the best they can. The Bible and other holy books command that they be honored. But in the case of PWDs, parents are often not honored–they are martyred. This cheats everybody, and keeps PWDs from being seen as real people. If you are a parent of a PWD, yes, share your experience. But do it respectfully, and point people to the real source of knowledge. Let’s start communicating–and living out–the truth that nobody knows disability quite like the person who has it.