My girlfriend's son, Sam, is a cute, happy, energetic 6-year-old. Sam also has cerebral palsy. The funny thing is that a lot of people have a really hard time getting past Sam's wheelchair. They see the chair, not the child, and it's really too bad because Sam is a terrific kid.
In my medical practice all of the children I treat have a disability of one kind or another, so I'm around wheelchairs, walkers, crutches and artificial limbs all day every day. Recently I began wondering how many readers have even one friend who has a disability. Have you ever made small talk with a person in a wheelchair or had coffee with someone who had an obvious impairment? It's my hunch that many will answer no to these questions.
Beginning the conversation
It's normal to feel uncomfortable when things aren't familiar so I've decided to open the dialogue about this seldom discussed topic and devote this month's column to some thoughts on disability.
One of the strangest things that happens to a person with a disability is that sometimes they're treated as if they're invisible. Let me give you an example. I was with a group at a very nice restaurant as the guest of the CEO of a well-respected nonprofit organization. He makes a good living, is intelligent and does a great job of running the charity, but he was born with almost no arms and legs so he uses hooks on his arms, has artificial legs and uses a scooter to get around. During our entire evening together the waiter looked past him to the person seated next to him and asked what our host would like to eat or drink, etc. When the CEO spoke up for himself the waiter raised his voice and spoke more slowly. The big message is: talk to a person who has a disability just like you would anyone else.
A lot of people say that when someone uses a wheelchair they are "bound" to it. A child who uses a wheelchair isn't "bound" to it anymore than I am bound to my glasses. I definitely need them because I can't see well without them, but my glasses don't bind me, they assist me. The same is true for a child who uses a wheelchair.
I know the name game can be confusing for people. Things can change so quickly, but the preferred description is "a child with a disability" or "a child with autism" instead of "a disabled child" or "an autistic child." The first description makes the disability only a part of the child's experience, the second description makes it the entire child. The language changes as the disability community grows and becomes more self-empowered. The easiest way to know what language to use to discuss a child's condition is to listen to the words the parents use to describe it.
One of the most difficult things for parents who have a child with a disability is watching their child's peers pass them by. Parents often feel a loss when other children walk, but their child doesn't, or other children talk, but their child doesn't, or other children start to read, but their child doesn't. For some parents early childhood seems like a series of losses but there are some amazing breakthroughs. My girlfriend's son started talking after four years of using sign language, gestures and guessing. One of my patients became potty trained after seven years of diapers. For parents who have a child with a disability it's patience, baby steps and celebrating small, but significant accomplishments.
A new normal
Having a child with a disability isn't what Sam's mom hoped for during her pregnancy, but he's the child she has and she wouldn't trade him for anything.
There are more than 4.5 million children growing up with a disability and their parents don't want pity, just understanding. These families create a new normal for their family and carve out a space for their child to reach his or her full potential.
That's what every good parent wants.
Dr. Lisa Thornton, a mother of three, is director of pediatric rehabilitation at Schwab Rehabilitation Hospital and LaRabida Children's Hospital. She also is assistant professor of pediatrics at the University of Chicago. E-mail her at firstname.lastname@example.org .