We’ve talked on this blog before about the idea that people without disabilities often erroneously believe that people with them somehow need to change or be “fixed.” Often, that’s because of the medical model of disability, which says that disabilities are, at their cores, problems or burdens–negatives rather than potential positives. That’s where we often get “experts” spouting gloom-and-doom prophecies over people with disabilities, which sometimes turn out to be self-fulfilling. It’s where we get families and loved ones that are so caught up in treatments and therapies, they forget what it’s like to live a real, balanced, enjoyable life. But outside of the medical model, there exists another convention that says PWDs are somehow “wrong” and need to change. I like to refer to it as the social model of disability.
What is the social model? Well, for the purpose of this post, I’m going to focus more on people who have disabilities that are more likely to affect them socially. These include autism, Asperger’s Syndrome, cognitive or intellectual disabilities (because they can result in trouble with “adaptive behavior,”) or ADD/ADHD. These disabilities might be “visible,” or they might not, until you’ve been around the person for awhile. But I’ve noticed a disturbing pattern in the way that people without disabilities react to them. For example, let’s say that Rosemary has Asperger’s Syndrome. Rosemary could be any age, but the point is, all her life, she has struggled socially. Maybe that’s because she has specialized interests that her peers don’t share. Maybe it’s because she’s quite brilliant and more mature than most of her peers, or maybe it’s because she’s not “wired” to pick up on subtle social cues like body language. For whatever reason, though, Rosemary has a hard time with people. She’s been through therapies for this, but they don’t seem to help much because the “social model” of disability is always there. The “social model” that says, “Rosemary, you need to try harder to enjoy what your classmates enjoy/make small talk/understand what people are trying to tell you.” It is a construct that tells Rosemary that in order to be accepted, she, and only she, must change.
I see several problems with this social model, but I’m only going to zero in on a few. Here they are:
1. My biggest problem: Why is it that within a social context, the burden to change, or to “try harder,” or whatever you want to call it, is always squarely on the shoulders of the PWD? It’s as if we’re saying it’s that person’s fault for being born “wired” to interact differently! It’s as if we’re saying, “If you weren’t so _____, you’d have friends, so shape up.” Plus, sometimes the word that goes in that blank is a negative, unfair word. For example, we might call a person who has autism “rude” or “spacey,” but they’re not trying to be that way. They were born–I’ll even say created–with the tendency to see and interact with the world differently. Sometimes, that translates into a tendency to seem to be “in their own world.” But when you think about it, sometimes our world sucks. Who doesn’t want to escape into his or her own world now and then, huh? The point is, what’s rude to you may be totally normal to the PWD, or what’s normal to you may be strange or even freaky. “Trying harder” may improve some manifestations of this–such as if a person with autism has a tendency to bang his or her head on hard surfaces. And sometimes, that improvement is needed. But sometimes it’s not. And “trying harder” will not make the disability go away.
2. We often say we love and appreciate the PWD “just the way you are,” but in the next breath, we’re urging him or her to be different. Sometimes we’re even insensitive enough to use the word “normal.” For example, remember Carly Fleischmann? Her parents told her, “You don’t need fixing,” and they meant it in all sincerity. But they also sent her to “respite care” in part to “work on [her] behaviors.” Do you hear the contradiction there? Again: yes, sometimes, some disabilities cause issues that need to be dealt with. For instance, someone with ADHD may need help focusing and calming down so he or she can do well at school or work. But even then, the help should be as natural and encouraging–not discouraging–as possible. When we say, “I love you as you are” to a PWD, let’s mean it!
3. Let’s think about this. What would “changing” really do to the PWD who you want so much to be different or “normal?” For instance, let’s go back to Rosemary. Sure, having Asperger’s Syndrome can be painful for her. Maybe her loved ones wonder, wouldn’t she be happier if she could do ____ better? Maybe–but one, did anyone ask her? Did anyone inquire as to what kind of help with Asperger’s Syndrome she wants? And furthermore, let’s pretend for a minute that the people around Rosemary got their wish. What if she was “typical?” The people around her might lose someone totally unique and cool, with brilliant ideas and a fresh, honest way of looking at the world. I don’t think most of us would truly want that.
The medical model of disability, as it stands, is often discouraging and dangerous. Yet, many people are unaware of another dangerous way of approaching disability–the social model. Let’s start telling PWDS, “We love and want you,” rather than, “We love you, you’re perfect–now CHANGE!”