After some computer issues, I have returned for the first post of April. I’ve actually been working up this one for awhile, ever since I decided to watch a few videos on YouTube one day last month. Among those was a TLC documentary entitled My Deadly Appetite, about a young man named William Weaver who has Prader-Willi Syndrome (PWS).
Some of you may remember that we’ve discussed PWS on this blog before. In its most basic terms, PWS involves a malfunction of the hypothalamus, the brain region that controls involuntary functions. Among these are appetite and sensations of satiety and hunger. A person who has Prader-Willi cannot recognize when he or she is full. That individual experiences starving-level hunger 24-7, no matter how much he or she eats. Therefore, that person must be supervised constantly in order to avoid foraging to the point of causing a stomach rupture or other complications.
As said, William Weaver is one such person. My Deadly Appetite documents his journey with PWS as he leaves his Southeast home for a children’s institute in Pittsburgh, where he spends about six weeks losing weight, getting counseling, and preparing for big lifestyle changes at home. As I watched the documentary, I thought about this blog and how PWS can count as a disability. But at the same time, I read some of the comments aimed at William’s story.
To be honest, they were disgraceful. They included things like (paraphrase here) “It’s the parents’ fault…they’re so stupid and lazy,” and “He should be put in a nursing home.” I also saw comments like, “Just because he has ‘special needs’ the parents don’t discipline…so he’s fat…if a special needs kid punched me in the face, I’d punch them back…” as well as other comments related to kids with disabilities and the allegation that they have no discipline or control, largely because of parents.
I let the person who made these comments know I was appalled (they responded in an immature way, so I chose not to engage further). But reading these comments did make me think: why are parents of kids with disabilities so often blamed for the disabilities? Why do some people, including doctors and other “experts,” claim, essentially, that these parents could cure their kids if they’d just try harder, discipline more, and so on? Well, here’s a wake-up call, folks: most disabilities cannot be cured, and we need to stop acting as if the answer to all disabilities is to cure them or to “work on” PWDs so that they can be “normal.” They don’t need that–and their parents certainly do not need flak.
Now, of course, as with most things, there are exceptions to this issue. Some parents choose not to discipline their children because those children have disabilities. Or, arguably worse, they set the bar very low for their kids so that discipline and self-control are never learned, because in those families’ minds, they are non-issues. And of course, you also have parents who discipline kids with disabilities too much, or take up their kids’ lives with therapies and appointments and treatments so their child can somehow be “fixed.” None of these situations are ideal, and they all hurt the people involved. But I think it must hurt most of all to be a loving, well-intentioned parent, raising your child with a disability to interact in the world and have self-confidence as best you can, and then have some nimrod shoot off their mouth about what you’re doing wrong.
I recently took a job as a writer for an online text company. One of the articles I chose to write was entitled “Seven Things Not to Say to Parents of Autistic Children.” I want to share some of those things with you, but with a slight change. These are the things we shouldn’t be saying to parents of children with any disability–and what we should be saying instead.
“I’m So Sorry.”
Yes, we understand that disability can be physically, emotionally, and mentally painful for any family dealing with it. But most parents would also say that to hear an apology the minute you meet their child with a disability actually feels like a slap in the face. Why? Well, I’m not a mother, but I do have a disability, so here’s my theory. In immediately responding with “I’m sorry,” here are a few things you may be implying:
-The child is a stressor and a pain, and not much else
-The child is pitiful
-The child has little to no future
-The parent is consistently sad, angry, stressed out, and wondering why he or she was “picked on” to have a disabled child
The truth, though, is that most parents whose kids have disabilities see them as true joys and blessings. They don’t consider themselves picked on–and yes, they feel stress, but raising any child is an exercise in stress. Those parents may struggle to believe that their child has a future, but I’d like to believe American society is working to make that less of a worry. So instead of saying, “I’m sorry,” how about, “Hi, how are you and Ava doing today? Can I help you in any way?” Likely, the best way you can help is to socialize, just as you would with any other parent.
“He/she just needs a good spanking.”
Yes, there are people who believe that disabilities would be less of a big deal if they were spanked or punished out of children. And yes, like other kids, some kids with disabilities may legitimately be undisciplined. But unless or until you know for sure, do not say this. In fact, don’t say it anyway. It implies the parent isn’t doing his or her job, and that’s a pretty major insult.
“But he doesn’t look disabled.”
Oh, okay, gotcha. So kids with disabilities need to look a certain way in order to get noticed or get the help and modifications they need? Kids with disabilities need to look a certain way to fit into your box? Thank you for that keen observation. I was really starting to miss the Of Mice and Men days. Not.
“God gives special parents special children/this was God’s will.”
I have said this before and will say it again: be extremely careful when you bring God into a disability-related conversation. In fact, you’re probably better off not bringing Him into it. I have a disability and am a Christian, and I still struggle every day with the idea that it was “God’s will” for me to have cerebral palsy. Some people, even and including Judeo-Christians, are flummoxed and even offended by the idea that a loving God would will a disability to happen to one child and not another one. Parents often get offended when you say a child with a disability is “one of God’s special angels,” too. Heck, I’m not a parent and I get offended–are you saying other kids are not special angels? As for the special parents, special children, thing–well, all kids are special and will have special needs at some point. It may be that your kid has an observable disability. It may be that he doesn’t. It may be that your kid’s “special need” is a pair of glasses. So what?
“My cousin’s friend has X, so I know how you feel.”
No, you don’t. Every PWD will have a different life and different experiences. As it has been said about autism: if you’ve met one individual with autism, you’ve met ONE individual with autism. Kids with disabilities of any kind are not all the same.
“Is she retarded?”
Don’t say it. Just don’t.
“Have you tried X? I’ve heard Y helps. He wouldn’t have this disability if you would…”
This is similar to those people who ask me, “Can you exercise and make your CP go away?” When you say it to parents, it’s at best unsolicited advice. At worst, it’s a blame game. You may honestly be trying to help, and that’s fine. But most people have probably heard dozens and dozens of treatments and cures already and would rather have friendship and understanding.
I could go on for awhile, but I’ll leave this post here. Just remember: every parent of a child or young adult with a disability is, ideally, doing his or her best. Advice, blame, and rudeness are unwelcome–but true concern and friendship are always needed.