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What Many of Those Inspiring Disability Stories Miss

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I saw this story on ABC News the other day, about a 16-year-old who lost her leg due to leukemia and continues to compete in gymnastics while wearing a prosthetic. It is an inspiring story. All of us face adversity in our lives, and it’s encouraging to know there are those out there who can fight through it.

I know these types of stories can generate strong reactions to some in the disabled community. And I’m starting to see their point. I also have cancer and I’m disabled. I’ve spent a couple years in a wheelchair, and I continue to need a walker and a cane, plus I need to wear braces on both legs. I’ve spent a lot of time over the several past years in intense physical and occupational therapy. I’ve seen others at therapy learning to use their prosthesis, and I can see their pain, frustration and determination. Seeing others struggle at PT has inspired me to push through my own struggles in becoming more independent.

There is something missed in these stories though. One is the cost in money and time when you need physical therapy. Therapy is tough, time-consuming and expensive. Consider prosthetics and braces. They are expensive and can be uncomfortable and painful. Those nice prosthetics you see athletes wear? They’re not usually covered by insurance. You need means to afford them. For those of us with cancer and other chronic illnesses, your body changes all the time. You lose weight, gain weight, age and so on. And that brace you had fitted six months ago? Guess what, it no longer fits, but insurance, (if you’re lucky enough to have insurance), may only allow one set of braces every two years. Then what?

Then consider life as you move into the world with your prosthetic, brace, wheelchair or walker. Yes, in the U.S. we have the American with Disabilities Act. It’s implementation is spotty at best. There are never enough handicap parking spots, and they get often placed in the strangest places. And no one seems to know how to build a proper handicap ramp. I’m fortunate in that I’m able to drive with an unmodified car. Modifying a car for someone is very expensive though. Let’s say you manage to drive to your destination, park and get up the ramp. You then have to deal with the dreaded front door. It’s as if the world only wants you to watch because you’re not invited inside.

The young woman in the ABC News story appears to have a lot of support from family and friends. I’m fortunate in this as well. I have a support network that provides the motivation and means to get me to my therapy and doctor appointments. But consider why we have these stories. Unfortunately, there are too many children and teens living with leukemia. Why don’t more of these kids have access to these types of prosthetics? Why aren’t more of them at the rehabs that provide the training to learn to become more independent? That’s the tragedy in these stories. The number of people in similar situations is such that we’re not unique or unusual. We’re just your neighbors, school mates and co-workers. We deal with life just as anyone else, with whatever tools and support we have available.

But we need less stories on inspiration and more stories about those obstacles, and on how as a society we can fix these obstacles. We need improved means and access to doctors, medicine, therapy, prosthetics and adaptive tools. Our U.S. health insurance system has to be fixed. We need a 2016 update to the ADA. So whenever you see another story on inspiration, please do something. Donate to your favorite charity, (my favorite is the Jimmy V Foundation). Call someone you know who may be struggling and offer to help. Call your congressperson or senator and ask them to revisit and update the ADA. We all need to inspire each other.

Thinkstock photo

Originally published: March 27, 2016
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