ARTICLE: Disability 101

ARTICLE:  Disability 101

My girlfriend’s son, Sam, is a cute, happy, energetic 6 year old.  He loves dinosaurs,  Sesame Street, and grilled cheese sandwiches.   Sometimes he gets really mad and throws awful tantrums.  Other times he’s so sweet his mother wonders how she got so lucky with such an amazing child.  When he grows up he wants to be a fireman and an astronaut and a doctor.  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 everyday.  I realize this is not a common experience and recently I began wondering how many people have even one friend who has a disability?   Do you?  Does your child?  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 most people will answer no to these questions.  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. 
1.  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, non-profit organization.  He makes a good living, is intelligent, and does a great job of running the charity.  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.  He was our host, he made the reservation, he paid for dinner, but during our entire evening together the waiter looked past our host 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.  Maybe the waiter thought that this man was so unusual that his brains had been located in his missing limbs.  It made me wonder where the waiter’s brains were.  The big message is: talk to a person who has a disability just like you would anyone else. 
2.  A lot of people say that when someone uses 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.    
3.  I know the name game can be confusing for people outside of a particular group who are trying their hardest to keep up.  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.  So mentally retarded became cognitively impaired which became intellectually disabled.  Crippled became handicapped which became disabled which became a person with a disability.   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. 
4.  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 7 years of diapers and pull ups.  Seven years!   Sometimes the child who you see in the grocery throwing a tantrum is the same child who couldn’t have held it together for 5 minutes in a convenience store a few months before.  This time it took a full 20 minutes before the tantrums started.  The child may look disruptive to other shoppers, but it’s a victory for the parent who sees progress.  For parents who have a child with a disability it’s patience, and baby steps, and celebrating small, but significant accomplishments.
I once heard someone say that everyone has a disability, some are just more visible than others, and if you think about it it’s true.   Having a child with a disability isn’t what Sam’s mom hoped for during her pregnancy, but he’s the child she got and she wouldn’t trade him for anything.  There are over 4.5 million children growing up with a disability in our country and their parents don’t want pity, just understanding.  When it comes to their child they may have to change their expectations or at least modify the timeline, and by doing that they create a new normal for their family and carve out a space for their child to reach his or her full potential.  And that’s what every good parent wants. 
This column is not intended to be medical advice. Consult your personal physician for specific health concerns.