Rose-Colored Glass: What to Do (and Not Do) When Disability Defers a Dream

Hello, readers,

I’ll be honest. Today’s topic is not one I want to write about. I’m an idealist, and I’ve got the Meyers-Briggs type to prove it (INFJ, Counselor). I’d prefer to believe that people with disabilities truly can do any thing those without them can–and I separated “anything” because here, I meant “any single thing.” I’d like to live in a world where a child with an IQ of 35 (confirmed, not just projected by some “expert”) can become Harvard’s valedictorian. I’d like to live in a world where the kid with deaf-blindness can skydive, where the kid using the wheelchair can run a four-minute mile, and where trauma can be completely erased from the brains of those with PTSD. And because of science, medicine, and faith, maybe one day, that world will exist.

The truth, though, is that right now, it doesn’t. Some people’s rose-colored glasses end up shattered on life’s sidewalk. And–this breaks my heart–some of those people are people with disabilities. In fact, as we have covered, they’re more vulnerable than most people to that, because many of them are given no, or low, expectations from day one. Many of them are ridiculed for their dreams or told to pick something more “realistic” (and then treated as if the minimum that society can give them should be good enough). But that’s not the scenario we’re talking about today. We’re talking about the scenario that happens when, despite every modification, every best effort, every prayer, a dream truly isn’t working for a person with a disability.

Notice I didn’t say “not realistic.” Why? Because frankly, I hate that word. I don’t even think it applies to dreams of any person, of any kind–because dreams themselves always start out as higher than we think we can reach. Think about it. Was it “realistic” for Beethoven to be a composer? For Helen Keller to go to college? For Daniel Wallace to perform open-heart surgery, Bessie Coleman to fly planes, or Winston Churchill to be a politician? In their worlds, no way. But it happened, and stories like theirs continue to happen every day. Yet, sometimes, the dream just doesn’t work. What do I mean? Let’s look at an example, maybe two.

As an armchair shrink, I sometimes read Psychology Today. My school library keeps back issues, and after a long summer, I came back there one day this week to catch up on that and a couple other magazines. In May’s issue, I found author Augusten Burroughs in the Two-Minute Memoir section, with an article entitled “How to Ditch a Dream.” Morbidly curious, I investigated, mostly because I’m as-yet unpublished outside the blogosphere (not for lack of trying). I was half-afraid the article would advise ditching that dream (not that I was inclined to listen, so why I worried, I have no idea. Must be the neurotic side of my INFJ personality coming out to play).

One of Burroughs’ anecdotes caught my attention. He wrote of his relationship with a guy who called “The Italian Who Still Basically Lived at Home” (because his mama did his laundry, apparently). It was explained that Mr. IWSBLAH had a younger sister. She was described as “warm, genuine, with lots of kinky red hair.” It was said her family believed she was “the next Meryl Streep, in their midst, hogging the bathroom.”

You’re waiting for that other shoe, aren’t you? Okay…(shoe thuds).

The younger sister was also “mentally disabled by some degree of retardation” (Burroughs’ words, not mine. I don’t like the word “retardation” or its derivatives; more on that in a future post). Burroughs described her as “anxious to operate a fork” for fear of spilling or dropping food.

Now, at first, I cheered for this girl and her family. How wonderful, I thought–how stinking wonderful–that they could see past the disability and see a warm, funny future actress (who was convinced that “Mirror Street will not get to have [an Oscar] because I get to.” (Mirror Street = Meryl Streep). And I cheered at Augusten Burroughs’ assertion that “If I had such a child who was afraid to use her fork for fear of dropping it, I’d be the bad parent who says, ‘Screw forks!'” Yeah, why not? Every food in the world began as a finger food–so why don’t we, at least once in our lives, just screw the stupid forks and, as Burroughs put it, “eat like cave people?”

And this girl’s family was right to acknowledge, “That girl is no small dreamer,” as her mom put it. But the problem was, when she finally started going to auditions, she would “get confused.” Now, I don’t know what kinds of modifications were made, or if anyone were even willing to make them, if they would have been reasonable (and if directors refused to make reasonable accommodations, then shame on them!) But I can only assume the modifications would not have been reasonable. I can also assume, because the family described their daughter and sister’s mental disabilities as “discovered” after auditions, that they may have been in denial. Sure, that’s better–infinitely better–than saying, “She’ll never do or be anything,” but isn’t it just as dangerous?

So, what does that mean for other children and adults with disabilities? Does it mean we need to put their dreams under microscopes and determine what is and isn’t feasible? Hear this: NO! NO! NO!What it does mean, though, is that we need to determine how well each dream works–and let the individual with a disability be as much in charge of that process and decision as is reasonable.

I’ll give you another example, one from my own life and one similar to Augusten Burroughs’ own. I love to sing. And one particular dream of mine has always been to be an actress–an actress, not an extra–in musical theater. And as much as I could in high school and college, I pursued that dream. But the truth is, my mezzo-soprano voice is not an A+ voice. It’s basically good, but not standout. And when I dance or move onstage, I look a bit like, as Burroughs described his own acting attempts, a “J.C. Penney mannequin.”

Now, does that mean reasonable modifications couldn’t have been made? No–but one, how many would that have involved? If the whole production has to be turned on its head for one person, then the modifications proposed may not be reasonable. And after awhile, I discovered that what I really loved about plays and films was the characters and their stories. Deep down, I really wanted to be the playwright, not the actress. I still had a creative, fine-arts-centered dream. But my “vehicle” for achieving it, as Burroughs would say, has changed (though I still love theater and take any opportunity to perform).

So, what happens when your loved one with a disability has a dream that isn’t working? Do you shut it down? Say “I told you so?” I should hope not. What you do instead is what anybody does when the car breaks down. You try to repair it. But if you can’t, you switch vehicles. So yeah, maybe your child who’s a quadriplegic loves football and dreams of playing, but honestly can’t. So you determine what it is he loves about the sport, and get him connected to it. Maybe he’s the next great sportscaster, sportswriter, or something else. Maybe your child with mental disabilities would love to be a doctor, but her brain simply won’t cooperate. So, you connect her to the medical world as best as that can be done. Maybe she can share her own medical stories and inspire others, or teach them a bit about what makes a good doctor vs. a bad one. You get the idea.

Maybe we do need to take off the rose-colored glasses. But I’ll remind you, readers: that doesn’t mean the roses suddenly stink.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s