Well, I have finally finished the first spring semester of my second Master’s degree–something many people would claim a child with a disability would never grow up to do. Go ahead, you can laugh at that. We all ought to know by now, the medical, therapeutic, and other “expert” communities are often not nearly as “expert” as they–and we–think they are. But their negative prophecies for the lives and futures of people with disabilities still circulate every day, like noxious clouds of poisoned air. And we need to expose them, before our loved ones with disabilities breathe too much of that air. Because too much “not” air can be lethal when it comes to a person’s self-esteem, confidence, dreams, and desires.
Most people would probably agree, constant negativity isn’t good for anyone. Spending all your time thinking in terms of “can’t,” “won’t,” and “never will” can make you emotionally, spiritually, and even physically sick. We encourage our children to develop positive attitudes from an early age, even if they have temperaments that aren’t naturally bent that way. I happen to be one of those people; my primary temperament is known as Perfect Melancholy in personality theory. In other words, I’ve got high standards for myself and my achievements, and when they aren’t met, or no one seems to care, I get depressed, moody, or just plain mad. In fact, my parents–God bless ’em–often used to say, “You are the most negative child I’ve ever seen,” out of love mixed with pure frustration. I don’t know how they put up with me sometimes; my childhood was good, but could be emotionally rocky for everybody involved. Authors put out books now for parents on how to help the child bent toward negativity. Well, I have to laugh. Those books are, oh, maybe sixteen years too late. 🙂
Remember my counselor? Yeah, the one who erroneously convinced me my relationship with the folks was emotionally abusive? (Thanks for nothing!) But she did point out something I’ve tried to keep in mind since then. It can be criminally easy to think in terms of “not.” As in, if you think everything you do is bad, the opposite of bad, in your mind, becomes “not bad.” Instead of telling yourself, “I’m fat,” you may start saying, “I’m not fat.” Or “I’m not a bad person.” “I’m not dumb.” You get it. What’s wrong with that? I’m sure you know the answer.
Right. The problem with “not” thinking is, it still keeps the negative construct in there, even if you’re trying to get rid of it. So you have to learn to say, “I am active, a good size, and fine the way I am. I am a good person. I am smart.” Positive things.
Unless, of course, you’re a person with a disability, because Disability Land’s foundation is heavily built on “can’t,” “won’t,” “never will,” and the “not” construct. And that’s my problem with the whole thing. Why do we encourage positive thinking among other people, but when it comes to people with disabilities, consciously or unconsciously tamp down that thinking with the “not” construct? These buzzwords are out in force, people, and our loved ones have been stung so much, I’d venture to say most of them are emotionally swollen. Some might even have emotional anaphylaxis, for crying out loud.
I’ll give you a couple of examples. Some might seem obvious–you may have experienced them yourself.
The negative constructs and thinking usually begin when a child with a disability is born. The doctor, or other expert, takes a look at your perfect, adorable baby and says, “I’m sorry, but your baby has Down’s Syndrome (or Fragile X, or whatever other visible disability might be there). She will never have a normal gait. He will not have normal speech. She will need a special school because her IQ will probably never be above 50.”
Or, maybe you got off a little easier. Your baby seemed perfect at birth–and can I stop for a moment to remind everyone–every baby is perfect, disability or not. So you escaped the “not” construct at the hospital. But then you take the baby home, and in a matter of weeks, months, or years, you start to notice something’s off. Maybe your kid’s too stiff or too flaccid. Maybe he or she doesn’t look at you or reach for toys. He or she doesn’t seem to see or hear you. Has an awkward walk or turned-in toes. Doesn’t speak as well as his or her playmates, to the point that even family members have trouble understanding. You name it, you may have seen it. So you take the baby back to the doctor. At first, he or she might say, “Don’t worry; he’ll grow out of it” or, “She’ll catch up.” But in some cases, that turns into, “I’m sorry. Your child has ____. She will never ____. Take him home, do the best you can. He can’t be expected to do much.” Or, “You need to get this child into therapy right away.”
So you go home. You grieve–as you’re expected to do, because the experts set you up to do so. You follow all the advice, crunch some numbers, and start therapy. And then the therapists get to you. They start saying things like, “She’s made progress, but she won’t be able to walk,” or, “He can’t be expected to learn at grade level.” Or, “She’ll never be able to shake the effects of this disorder.”
So you grieve again. But you go on. You accept the negative verdicts as best you can. After all, this is your kid, and you love him or her. If modifications are needed, big deal, right? You make those happen. And often, you’re surprised because your child (or young adult) exceeds those negative expectations. You may even get mad at doctors, therapists, teachers, or others who make these bleak predictions because, darn it, you’re the parent. Who knows this kid better than you do? Yet, the expectations continue. And as hard as you try, you can’t shake the idea that maybe, some of them are right. Maybe your teenager wants to go to college, but it’s not “realistic.” Maybe a group home or sheltered workshop really is the best place. Maybe your child needs more therapy, not less. Maybe he or she doesn’t need the chaos and distraction of the general ed classroom. Maybe….
So one day, your child is growing up, or perhaps has already grown up to a large extent. Your eight-year-old, who uses a wheelchair, comes to you and says, “I want to play soccer.” Your five-year-old with an intellectual disability says, “Mommy, Daddy, I want to go to kindergarten with my friends.” (Yes, that child can and should have friends). Your teenager with OCD, PTSD, or another emotional disability says, “I want to go to prom” or “I want to become a motivational speaker.” Your teenager with autism says, “I want to go to college.” Your eleven-year-old with a visual impairment or seizure disorder says, “I want to go to the beach with the youth group”–three hours away by bus.
What are you going to do?
Understand, of course, that I am not advocating giving people with disabilities whatever they want. As I explained in my last post, sometimes, that’s not safe. And sometimes, it’s not realistic–yet. But “yet” is the key word here.
Many people with disabilities–too many–grow up with negative buzzwords flying around in their heads. And what happens if you’re exposed to certain words or ideas long enough? Right. You believe them.
I realize there are a lot of parents, guardians, caregivers, friends, and loved ones out there–many who are probably reading this–who are saying, “You don’t understand.” And you’re right, I don’t, because I’m not in your exact situation. But I am an expert at having a disability, because I have 26 years of experience. And I understand exactly what this negative outlook can do, not only to the person with a disability, but to everyone in that person’s life. None of it is good.
So instead, let’s learn some new words. The Gospels say “All things are possible with God.” (If you’re an atheist or agnostic, you can eliminate the last two words, but bear with me.) You guys should know my feelings by now on why people with disabilities are here in this world. So why not open the world–the whole world–up to them? Let’s start asking,
“How is it possible for my child to play soccer? Go to a real college? Be educated with peers who don’t have disabilities? Become the person he or she wants to be? Go where he or she wants to go?”
Put real effort into answering that question. And start telling everybody–including your loved one and yourself–