Pursuit of Happiness, Pursuit of Choice: People with Disabilities and the Right to Choose

Hello, readers,

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.


Talk to Me: Making Communication Accessible for all People, with all Disabilities

Happy July, readers!

We are now less than 48 hours from the 4th, also known as Independence Day. And yes, we will be talking about independence this month, but not in what you might consider “typical” fashion. We’ve already discussed whether or not PWDs can achieve any kind of independence, what that means, and the real version of independence vs. what society (which does not have a majority of PWDs) thinks it is. No, now it’s time to discuss the smaller ways people with disabilities need to feel independent way, WAY before people start talking about careers, living arrangements, and other “transition services.” (In itself, that’s often a misnomer–they’re often not services, and there’s often little to no transition involved. For too many PWDs, especially those with disabilities like Down’s Syndrome, autism, Fragile X, and so forth, “transition” eventually becomes “more of the same; I’m just older.”)

So, what are some ways we can help PWDs feel independent before that time hits? If you read the title, you know the first one, and it’s one I’m passionate about: communication. Let me say this the way my real estate agent dad would say it: Communication, communication, communication! I have often said and written, other than your faith, communication is the greatest power you can possess. Henry Higgins said it too, in one of my favorite musicals, My Fair Lady. (Of course, he was rather a jerk about getting Eliza Doolittle to realize this, since it erroneously had to be only on his terms, but he had a point). And many people, especially PWDs, know it firsthand. Just ask Helen Keller, or Joni Eareckson Tada, or Carly Fleischmann. I don’t remember what book this came from, but I’ll utilize a quote now: “If you can’t talk, people ignore you.” Yes, and more disturbing than that, they assume you’re stupid and need “special help,” or that the ways you’re trying so hard to make yourself heard are “behaviors,” often of the unacceptable variety. (Although who determines that, I have no idea; yes, some things people do are unacceptable, if they hurt others or destroy property. But come on. If you couldn’t communicate, really needed or wanted something, and the only way you could express that was to scream, the last thing you’d want is to hear some aide or expert go, “Now, Joe, that’s unacceptable. Stop that.”)

Yet, when it comes to PWDs, that’s what we do.

I got the idea from this post from watching an HBO documentary entitled Graduating Peter. I’ve seen it before and I really hate it. It’s one of those shows that quite literally make me yell at the television set. But I guess it’s kind of a “moth to the flame” thing–I can’t help watching it. Maybe I’m hoping things will be different for Peter this time. You know, kind of like when you’re watching Steel Magnolias and you still hope Shelby lives? (Okay, maybe not applicable to most guys, but I’m a chick, so there you go). So anyway, I’m watching the thing, as much as I can stand anyway, and here’s what I notice.

In case you don’t know (and for that I kind of envy you) Graduating Peter is a documentary concerning Peter Wadouskis (forgive the spelling; not sure how you spell that). It was made circa 1995 as a sequel to the 1993 Educating Peter, wherein viewers saw Peter enter third grade at a mainstream school, the first in his school district of Blacksburg, VA to be “included with ‘regular’ students” despite severe Down’s Syndrome. In the sequel, viewers follow Peter from sixth grade through high school, after which he “graduates” with a certificate of attendance.

I’m not going to go into every little thing that bothers me about this documentary, because I’d be here for the next two days listing things. Plus, everything that bothers me hearkens back, in some way, to the overarching communication theme. But just to give you a somewhat broad-based idea, here are a few of the big nasties:

  • Sixth grade: Peter goes from class to class with the help of an aide. His class schedule includes band, but he does not participate in band. Rather, the aide asks him, “What do you want Brian to take to band? You don’t want puzzles…do you want games to take?” Notice the aide referring to self in the third person (what, is Peter’s middle name Elmo)? And why is this kid being “included” in band, but not given any means to participate?
  • Seventh grade: Peter sits in on a “regular” English class. While the teacher talks to the other students about term papers, Peter wanders around the room, or practices printing letters H-K, uppercase and lowercase, on a first-grade level worksheet.
  • At home: Peter refuses to wear or tie a kerchief that is part of what is presumably a Scout uniform (we’re not told that). Because he does not want to do this, his mother says “We’re not going.” She tries several times to help Peter, and continues to try to force him to use the kerchief although he gives her very clear statements, in his own way, to stop.
  • High school: Peter is required to go to the school laundry room to unload laundry, and refuses to do so. He sits doing nothing in the laundry room, with the special education teacher scolding him. He is unresponsive until the next scene.
  • Also high school: Peter is required to go to several job sites, where one of the more challenging things he does is picking up trash–yet again, the idea that PWDs exist to clean up after “regular” people. Peter is then corrected/scolded for pushing the trash can in the wrong direction. He is also coached by the owner of the small business pictured in that scene that he can “try” to fill up the trash can.

In addition, Peter’s own mother, while I’m sure she loves her son, makes a number of disturbing remarks throughout the documentary. These include, “We don’t live in a world of people with disabilities; we live…for lack of a better word, with regular people.” She also says of her son, “He tries so hard to do what people want…but he can’t do it…he’s a failure.” Yes, that’s right. Peter’s mother just called her own child a failure.

Peter spends his days being coached on things such as how to ride the bus. Mom reminds him, before he goes off to middle school, “Keep your feet on the curb…the backs of your shoes…” (in case he couldn’t figure out what “feet–curb” was), “Use your quiet voice on the bus, stay in your seat, and keep your hands to yourself.” Wait one darn minute; isn’t this what we teach children in kindergarten?

You can tell why I was screaming at the set. Here’s the main thing, though: throughout Graduating Peter, Peter is shown sitting alone at a lunch table, speaking unintelligibly, taking food off classmates’ trays, and in general, behaving the way someone with stereotypical Down’s Syndrome would act. Yet, his mother admits on camera, “He needs to read better than he does…speak better than he does…I want Peter to take care of himself.”

So why didn’t anyone teach this young man to do those things? Maybe they would have, had Peter been able to communicate with them instead of grunting, screaming, and the like. But then the question becomes: why didn’t anyone teach him that? In Educating Peter, his mother complains about a special ed preschool Peter went to because none of the other kids there could speak. Yet, Peter continued to attend speech therapy as a young adult, but never seemed to get any “better.” Did those around him figure that if they didn’t push Peter to speak the “normal” way, they would be giving up on him? Well, why ask–it seems to me he was given up on way back in third grade, when somebody decided it would be a good idea to document the life of an “inclusion student” who isn’t included worth squat. Hear me: Being in the same room with someone does not mean you are included!

So you may ask yourself, “But how can Peter communicate?” Maybe you thought what I originally did: that maybe certain methods had been attempted, but failed. And yet I ask myself: we weren’t told if assistive technology or communication methods were used, so how do we know? Maybe Peter’s family decided assistive technology was too expensive; could anyone have given them help in that regard? I know I would have and so would many, many others. And most of all: how do you know when a method of doing anything with (not for) a PWD has failed? Some people would claim they know something has failed because the PWD refuses to “cooperate.” Well, maybe there’s a reason for that. Maybe they’d rather communicate some other way. (And just a side note: why do so many experts continue to claim there’s only one way a person with any kind of disability, but especially a moderate or severe one, can learn or accomplish anything)?

I ask myself after watching this: what would’ve happened if Peter had assistive technology? His mom, his aides, and his teachers said they wondered what he was thinking; well, suppose they could find out? There are so many options out there–picture boards, computerized machines, keyboarding, cards, books… And yes, of course, in 1995, some of this may have sounded new or radical. And maybe some people might say “Peter’s not smart enough to learn to use that assistive technology.” But I challenge that, on this basis. Is Peter’s IQ going to get any higher? Probably not, as far as I know (and I’m not a doctor, so I’m not 100% sure). But again, as far as I know, IQ doesn’t just soar up or jump down, in the absence of severe trauma, Alzheimer’s, and so forth (and maybe IQ has nothing to do with those). So really, I don’t think communication, and whether Peter, or anyone else, is “smart enough” to use it, is a disability issue. I think it’s more an issue of people not knowing what’s out there, being scared it won’t work, or, heaven help them, giving up.

Now, again, I’m not trying to bash anyone. I’m sure Peter’s mom loves her son, and I’m sure Peter’s school tried. (Hard enough? I think not, but still, no good comes of saying special ed and the like is evil). But I think Peter Wadouskis was given up on and exploited, and that if he had a voice, he would, in his own way, been able to express that.

Think about it. Imagine that for one day, you couldn’t talk except in grunts, screams, or intelligible syllables. Wouldn’t you do anything to make yourself heard?

Let’s give PWDs the first real step toward independence, by making it possible for them to talk to us.