My brother Kyle: A special lesson in human value

As the Winter Olympics come to a close, the time comes once again for us to return to our routine TV schedules, oblivious to the physically disabled who are competing in the Winter Paralympics. The games resemble the Winter Olympics, with patriotic fanfare and fierce competition, except these athletes are, of course, handicapped. With only five sports—alpine skiing, biathlon, cross country skiing, wheelchair curling, and sledge hockey—the Paralympics is a minor spectacle compared to the lavish and gaudy celebration that precedes it. While the International Olympic Committee pats itself on the back for representing a disenfranchised minority, much of the world is unaffected. And even though I have a handicapped older brother, I count myself in that apathetic majority.

My older brother Kyle suffers from a rare and serious congenital disorder, which (for those biology majors out there) consists of an extra 15th chromosome fragment, similar to the way mutations on the 21st chromosome cause Down Syndrome. With fewer than 100 known cases ever reported, the doctors still have no idea how to treat or deal with his illness besides pumping him with drugs at every meal. The symptoms are severe. Low muscle tone makes all movement difficult. Hardly able to walk or speak, he struggles with many of the same physical detriments as those athletes who compete in the Paralympics.

My brother’s condition also makes him severely mentally retarded. My parents first noticed his intellectual impediments when, at two years old, he seemed to struggle with learning how to speak. They never expected that, at age 19, he still wouldn’t be able to convey meaning through speech.

As a student attending one of the nation’s top universities, I’m graded and valued based on how I express what I know, in a constant struggle to assert intellectual prowess. But how do I reconcile this system of valuing people with the abilities of my brother, who won’t ever be able to read? Does his lack of ability make him less valuable than me?

Kyle can’t go to the restroom alone, can’t eat alone, can’t bathe alone—he can’t really do anything alone, needing full-time supervision by trained professionals. Struggling with seizures and symptoms of autism, he has no choice but to take a lot of medication. The drugs keep him alive, but they also alter his hormone levels, making him excessively violent. I’ve had to fend him off from attacking my little sister and mom, because he didn’t get the cookie he wanted. By the time he reached his early teens, the weight of caring for my brother became too much for my parents to bear. Because both my parents work full time, we were physically unable to care for Kyle any longer.

In our home state of California, the system that looks after people with mental disabilities has not been kind to my brother. Barred from facilities based on his gender, his size, his condition, his day-to-day inadequacies, his medications, and his violent tendencies, the state has tossed him around with minimal care for his wellbeing. Currently, he has no home, kicked out of the last facility for being “too much to handle.” Fighting the clock and a chronically underfunded system, we have only two options: my parents must either quit their jobs or send him to a facility that resembles a prison more than a home.

While it’s hard for me to see my brother scorned by his country like this, in a way, I understand. Why should we expect anyone to care for those who lack the very cognizant functions that make us human? Why should we pour our tax dollars into programs that care for children who, thanks to modern genetic technology, can be terminated, avoiding all the hardship? What value does he have to our society? He can’t vote, marry, procreate, pay taxes, work, create art, converse. Hell, he can’t even compete in the Paralympics. What good is he?

I’ll tell you what he’s good for. On a day when you’re feeling stressed from trying to live up to all of the expectations that everyone has for you to be the best, the strongest, the prettiest, the smartest—he is serene. Seeing him laugh as he watches an episode of Barney that he’s seen hundreds of times teaches me that my value comes not from my accomplishments, but from being who I was made to be. He is who he is.

So while I think it’s great that we honor our handicapped athletes in the Paralympics, I also know that their value doesn’t come from their performance on the slopes or on the rink. It comes from inside. From who they are. And Kyle doesn’t need a gold medal for the world, the state, or you to know that he’s worth something.