I hope everyone had a marvelous Independence Day. My own July 4 was pretty rain-soaked, so it was quieter than usual, but I didn’t actually mind. The truth is, I like things quiet. In fact, I’ve never liked fireworks that much, not only because they’re loud, but because, with my lack of depth perception, they always look like they’re hurtling right into my personal space. Now, as an adult, I’ve mitigated those feelings somewhat, but as a kid, Independence Day was one of my least favorite days, because it meant getting dragged to fireworks displays and being made to feel ashamed that I did not enjoy them. Now, that had nothing to do with my CP, in itself. However, looking back, I have to wonder: how many kids with disabilities are going through the same kinds of things, no matter how loving and well-meaning their parents and other loved ones are? That is, how many people with disabilities don’t have much choice in many things, just because they have disabilities? That’s the theme of today’s post: the fact that people with disabilities have a right to choose.
Now, yes, we’ve talked about some of this before. We’ve discussed the fact that adults with disabilities have every right to choose where they will work, live, have leisure time, and so on, and that they have every right to participate in processes set up to help them decide these things. But remember, this month, we’re focusing on what we can do to help PWDs feel independent–have their own Independence Days every day–before someone in their home or school decides, rather arbitrarily, that it’s “transition time.”
Of course, some of this goes back to the communication issue we discussed last week. PWDs who cannot or do not speak with their mouths are often unjustly seen as stupid, and therefore, have decisions made for them. But for a PWD, the ability to verbally communicate is sadly not a safety net from lack of choice–lack that, unfortunately, starts very young. Let’s look at a few examples, some fictional and some from real life.
- Fiction: In Sharon Draper’s Out of My Mind, fifth-grader Melody Brooks struggles to communicate her own basic needs and wants. But she also observes classmates (in a self-contained room) who have no choice in basic areas. For example, she tells us about a classmate whose mother constantly dresses her in perfectly matching outfits, with color-coordinated hair bows and shoes. Yes, it looks “cute,” and yes, the girl seems not to mind–but does she? Would she choose to have her mother dress her like that? How many real children with disabilities are in the same situation? That is, have they, and their parents, become so used to their not dressing themselves, that everyone forgot: this person can pick out his/her own clothing? This person has clothing preferences?
- Real life: A critic of the documentaries Educating Peter and Graduating Peter (see last week’s post) points out that in one documentary, Peter is seen wearing the same shirt for several scenes. I wonder: did he want to? It could be–everyone has certain items of clothing they’d wear every day if they could. Or was Peter’s clothing issue instead the result of people deciding what he should wear and when, and chalking up any protest he tried to articulate as “bad behavior?”
- Real life: I’ve referenced this before, but it bears repeating. I once went to a Bible study dinner with several young men from a local group home in attendance. One of these men was told not to eat the available brownies because he was overweight/on a diet. Well, excuse me, but who among us has never cheated on a diet? If that man had not had a disability, would anything have been said? And what does it say about this man’s life, that even his food choices are policed? Food is a basic necessity to sustain life. Yes, there are certain things we shouldn’t eat too much of, but too much of anything, even fruits and vegetables, is undesirable. And if that basic choice does not exist, what will happen to other choices?
- Real life: Not specific, but too often, children and young adults are barred from making choices related to things such as:
A. The school courses they will take (especially electives). They may be forced to take required electives (what an oxymoron) like PE, with little or no modifications, or modifications that are inappropriate. Or they may be kept out of classes arbitrarily deemed “too hard” for them, because the school has never accommodated the kinds of needs that student has for that class, nor do they want to. This is often because they’re more concerned about the almighty dollar than the students they claim to serve.
B. The friendships and activities in which they will participate. Again, this is often due to a lack of modifications or desire to modify, but sometimes it’s due to a lack of the other parties wanting to compromise. For example, let’s say that in a group of three or four kids, one kid has a disability. So when the other 3 kids want to play baseball, which their friend either has no interest in or cannot do well, the PWD ends up sidelined. Or the PWD suggests they do or play something else, but is rebuffed because “majority rules” and “that’s what’s fair.” And yes, I know, life isn’t fair. But why does the person getting the “unfair” end of life’s stick always have to be the person with a disability?
C. When they will do certain activities. This is because often, PWDs, especially those with intellectual disabilities, are placed on “routines” or “schedules” thought up by another person. The defense is often that, “Sarah thrives on routine,” or “Rosina needs this.” And maybe she does thrive on routine. But what happens if, say, she’s “scheduled” to play outside for an hour on Monday, but one Monday, during that hour, she’d rather watch a movie? What happens if she gets hungry before the “scheduled” lunch time of 12:30? Of course, the defense there is, “No big deal; we’d just respond to that,” but what if Sarah or Rosina couldn’t (or wasn’t given the means to) communicate she was hungry, tired, or wanted to do something else? Or what if it had been determined that Sarah and Rosina were “manipulative” and were trying to “deviate” just so they could have their own way? Scary thought, isn’t it?
There are so many little choices you and I make every day and take for granted. What to wear? What to eat? How to spend leisure time? And yes, I know the Bible says we shouldn’t worry about food and clothes. But I’m not concerned about food and clothes themselves. I’m worried about the people–living, breathing people–with minds, emotions, and desires–who have not been allowed or invited to choose even the most basic things. That’s got to change, because if it doesn’t, those people will continue believing they have no choice. They will not know how to express what they want or need, so other people will assume they know what’s best for those individuals, whether that’s true or not. Part of independence is choice. Let’s make sure everyone, especially people with disabilities, have plenty of it, and let’s start young.