The Forbidden Question: People with Disabilities and the Right to Ask “Why?”

Hello, readers,

We’ve spent a lot of time on this blog talking about the fact that there are certain things people with disabilities, and those who love them, are not allowed to say according to society. According to the medical model of disability, for instance, these people are not allowed to say “no” because “Someone else will always know what’s best for you, and if you don’t go along with them, you are noncompliant and must be punished.” People with disabilities are not allowed to say “I want,” when it concerns big dreams like careers, colleges, and Real Lives, because those dreams aren’t “realistic.” They’re not allowed to ask, “Is there another way to do X,” and neither are those close to them. Think about it. If a parent or guardian disagrees with the methods or diagnoses of a child’s therapist or doctor, what’s the attitude he or she is likely to run into? Right–“Don’t question us; we’re the professionals.”

But see, that’s the problem. Humans aren’t born knowing everything, though we’d love to think otherwise. So we need to learn. And the best way to learn is to ask questions–except, in Disability Land, that’s not allowed. And one of the biggest questions people with disabilities are not allowed to ask? The question “Why?” As in, “Why do I have this disability?” “Why was I chosen to have one, when nobody else around me does?” “Why do I have to go to ___ (doctors, therapies, or other interventions)?” “Why can’t I do this?”

I would like to propose that “Why” is the most feared and silenced question in Disability Land, and often, the people silencing it are those who have the disabilities. Many years ago, I attended an appearance of a Christian speaker with a disability at a local church. One of the things this man said was, “‘Why’ is a whine.” He followed that up with his own catchphrase, “Don’t whine, but shine.”

Now, I understand where he’s coming from. Some questions, like “why do I have X disability,” are never going to have what we call satisfactory answers for everyone. And to spend your entire life asking “Why me” is to sound like, well, a whiny, out of tune violin. I mean, if you spent your entire life doing that, you’d never get up and DO anything. And that would be boring. But there’s a problem with the philosophy that “why is a whine.” It implies that “why” is the one question a person with a disability must never ask. And with that implication comes more implications, like, “Asking why means you’re ungrateful” or “You can’t do anything about it, so stop complaining.”

Yet, is “why” always a complaint? Well, yes, according to an ableist worldview, it is. For example, if a child asks a parent why he or she has to go to therapy, the parent will hopefully understand and have an answer. Maybe that parent will rethink whether the therapy is really needed, or could be replaced with something more natural. Or maybe the parent will say something like, “I understand you don’t want to go. But we need to because it’s important,” and then explain WHY it’s important, without scaring or shaming the child (“This is so you can do ___ better,” which sends a “You’re not okay the way you are” message, or “If you don’t go, you’ll never walk.”) But suppose the child asked the therapist the same question? That therapist might have the same response, yes. Or he or she might react in a way that says, “How dare this child have such a noncompliant attitude.”

Or, let’s say an adult with a disability asks something like, “Why do I have to depend on ‘job services’ for employment?” or “Why do I have to depend on para-transit to get anywhere?” Do you know what a blow that is to disability business? The person with a disability sees and hears a legitimate question. The job service provider, bus driver, or other person who erroneously believes he or she is in control, sees and hears someone being “uppity” and trying to buck the “help the handicapped” system.

What’s worse, the church even gets in on this. Remember, I told you that the guy who said “Why is a whine” was a Christian. And a lot of Christians perpetuate the idea that to ask God “why”–about anything, which definitely includes disabilities–is to imply He doesn’t know what He’s doing. Now, depending on the attitude with which the question is asked, that could be true. But too often, it isn’t. And as I keep relearning, God’s a big boy. He can take questions. The problem is, we don’t ask them. And we use God as a cop-out–as in, “God made you this way, so just accept it.” Yes, some parts of disability must unfortunately be accepted–such as that for now, a person who’s blind probably can’t drive. But other parts, such as the attitude of an ableist society? People with disabilities shouldn’t have to stand, sit, or even lie there, and take that. And often, the first step away from taking it is to ask one simple question:




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