Yes, this is one of my more Christ-centered posts. If you prefer not to read those, that’s fine. If you’re still here, welcome. This post will probably be a little shorter than most of them, but I wanted to share it with you.
First of all, I would like to clear up something: I am not, never have been, and never will be the ultimate authority on people with disabilities and what they need, want, or think. Hopefully, nothing I have said in this blog so far gave you that impression, but in case it did, now you know. And if you’re saying, “Yeah, I knew that–why write it again?” I’m doing so because everyone–including yours truly–needs a reminder of who IS the authority now and then.
I got the idea for this post from two sources. Last night, I was surfing amazon.com, because I just like to look at books, even when I don’t own them. And yes, I hunt down new releases, scope out bargains on out-of-print jewels, and enjoy audiobook samples. But every now and then, I also use Amazon for research, and last night, I wanted to look up Disability is Natural. It’s the 640-page book Kathie Snow based her website and informative articles on (also written by her).
Now, I have a weird thing about book reviews. Maybe it’s from my melancholy temperament or something, but when I read book reviews, I always look at the low ratings first. I figure, how many ways can you say “I LOVED this book?” And if someone who loves the book goes into details about why, I don’t want to know–they might spoil it for me. But the low ratings give me an idea of what makes the book less than perfect–therefore, what makes the author human–and gives me a sense of whether that book is worth my time and money. Usually, it is–a lot of those one-star people, I find later, are just venting, or they’re complaining about the book’s condition or the time it took to ship. Sometimes, I find out even though those people had valid concerns, the book’s still great. Sometimes, I find out those people were right the whole time. And sometimes, like with Kathie Snow’s book, I think, Hmmmm. This could go either way.
So, I’m sure you’re all dying to know what the one- and two-star people had to vent about. Generally, it was Kathie’s ideas about therapy. One reviewer poured a lot of vitriolic sauce on her words, saying, “This woman…is profiting from her son’s story, and all the money goes into her pockets…she thinks everybody with a disability is like her son.” That’s a paraphrase, but it was the worst review out there. Other reviewers claimed, “She insults parents and therapists to their faces…therapists put their heart and soul into their work.” I don’t doubt, most therapists do. And if you felt insulted, then I respect that. Another reviewer said, “Beware the section on alternative therapies…if we shouldn’t make kids “work” on therapy because they hate it, maybe we shouldn’t make them go to school…” In my humble opinion, that one was a little over the top.
What do I think about therapy? Well, if you check the December archives, you’ll find a post on the topic where I attempt to explain it can be good or bad, depending on where the therapy takes place, who the therapist is, and most importantly, who your kid is. And, despite the skepticism of that one reviewer, I have to say: If you make something a child enjoys “therapy work”–as in, “Oh, Sarah, it’s so good you love to play board games–now you can increase your hand-eye coordination!”–the child WILL NOT want to do it anymore. And yes, sometimes that happens with school–for example, I love to read, but reading is always a lot less fun when someone makes me do it. I power through–which is what kids in therapy should do most of the time–BUT I also allow time for myself, where reading is pleasure only. Sometimes, I think parents and therapists may forget, that one activity started out as pleasurable, so they may forget to say, “Okay, Sarah, let’s play this for fun.”
But I digress.
Why did I write that anecdote? To say it reminded me: Kathie Snow may have a kid with a disability (excuse me–young man, now). She may be a great mom. But she’s obviously not the ultimate disabiltiy authority. And neither is anyone else, even (and especially) therapists, doctors, and special ed teachers, as great as most of those people are.
So then, for the person with the disability, who is the authority? We all–myself included–would like to say the person is. And in an ideal world, that’s how it should be. But sometimes, that doesn’t happen, and sometimes, it’s not even safe. For example, my parents are extremely loving, but also overprotective, to the point that I have accused them of not allowing me to trust anyone except them (for which they apologized). I push for autonomy with them. Sometimes it goes over well, and sometimes–like when I get PMS and turn into a total Dragon Lady–it ends up in a screaming match. But here’s the thing. Sometimes, Mom and Dad are still right. After all, they’ve each still got about 30 years on me. So for example, as much as I might enjoy living abroad, by myself, in a two-room flat for a year, I listen when they caution that it probably isn’t safe. (Outside the U.S., accessibility for people with disabilities still basically stinks, although the services available depend entirely on where you are. Western Europe? You might do okay. China or Japan? Not so much. And Kenya, Nigeria, Indonesia, India? Forget that, pal).
So, if I’m not the authority, and neither are my parents, and neither were my teachers (I say, “thank goodness!” where some of them are concerned), then who is?
You do know where I’m going, right?
Yes. God is the authority.
And yes, I hear some of you–“But I’m not a Christian” or, “I’m a Buddhist” or, “I’m a Jain” or even, “I’m an atheist”. That’s fine. If you need or want to stop reading, please do. I will not be offended.
For those of you who are still here, I admit, swallowing the idea that God is an authority on people with disabilities can be a major undertaking. Because if you presuppose that, then you have to deal with the questions of human suffering (why God allows, for example, people to be born with disabilities so severe they have to face insitutionalization and worse), God’s goodness (could He be selfish and cruel), and other such issues. Some of the archived posts delve into these questions more, but that’s not the point of this post. No matter what you have to wrestle with where His personality is concerned–and believe me, I’ve done it–let’s just stick with His role as THE authority on humans, disability or not. He created us, right? And with purposes, right? And that means everybody.
So, here’s the thing. If that’s true, God looks at a person with a disability and sees a masterpiece. He sees something He created–and is PROUD to have created. (Preaching to the choir as I type this; I love/hate it when He takes over my typing fingers). And I think God looks down at the world–the world that calls these precious people incompetent, stupid, retarded, a waste of space, shameful, pitiful, and all those other cruel names, and says, “Don’t you understand what you’re missing?” (Or, if you really shoot off your mouth, He might even say, “How DARE you mess with my kid!” Papa Bear doesn’t mess around, folks.
In Second Corinthians, St. Paul wrote, “He has made us COMPETENT as ministers of a new covenant” (2 Cor. 3:6). Did you catch that? The NIV translation reads: COMPETENT.
Now, I know what you’re thinking. If you’re not a Christian, you might be thinking, “Whoa, Chick, back up. Are you saying my loved one with a disability is only competent if he or she believes as you do?” Absolutely not!
And Christians may think, “Yes, but how can my loved one minister?”
Believe me–I used to wonder the same thing. At best, I thought verses like 2 Cor. 3:6 were hokey. I heard all the tearjerker stories–you know, about the high school kids with intellectual disabilities who got up at graduation to make a speech, stuttering out, “I…love…JE-SUS…and…JE-SUS…loves…me!” Or the one about how everybody stopped teasing the girl from special ed once she said or sang something about God. And I thought, I don’t want to be that person. The person who everybody feels sorry for and whose Christianity is sappy. And I don’t want anybody else to have to feel that way.
But guess what? God doesn’t, either. He didn’t intend for the kids in those stories to be painted in a negative light; we, as humans, including yours truly, did that. And He certainly didn’t intend for “ministry” to be as limited as we make it–either too hard or too simple. But He did make people with disabilities competent, so the next time you hear somebody say otherwise, you might just think of God laughing and saying,
“Oh, yes, they are competent, My dear. You just don’t know how much.”
And if that person says back, “How do you know they’re competent at anything?” I think God might just grab a megaphone and, in His own unique, inaudible way, shout,
“BECAUSE I SAID SO, THAT’S WHY.”