Redefining Disability Challenge – Question 36

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-sixth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

How has medical treatment and technology changed in your life time?

There has been such rapid advancement in medicine and technology in my forty-two years (sidebar – that’s the first time I’ve written ‘forty-two’ since my birthday last week!). Let’s just look at wheelchairs.

My first wheelchair was one of the old E&J ‘hospital-style’ wheelchairs – all chrome and heavy. When I got my first Quickie lightweight in high school, it was revolutionary (and black, not hospital chrome). A manual chair that weighed less than twenty-five pounds! Nowadays, that would be considered a heavy chair given the new models which are less than fifteen pounds.

There have been advancements in the technology available on power wheelchairs as well. My first power wheelchair (red – of course) did not have an elevating seat. I have had seat elevation for almost ten years now and that technology has preserved my ability to function at my maximum independence. It has also made it possible for me to access cupboards and shelves in my house and stores. It puts me at eye level when I am at social functions, and gives me the ability to “stand” as a public speaker and make eye contact with my audience members.

This week I am reminded once again how important it is to have MY custom chair. On Friday, while staffing a table at a health expo in a local shopping mall, my wheelchair died. You might remember this summer when the controller died and I was without my chair for a week. Guess what died again?

Did you guess controller? Bob, the best wheelchair repairman I’ve ever had, diagnosed it as either the controller or the left drive motor. Either way, my chair wasn’t working.

Of course this happened while I was out in public, on a day I was to be a featured artist at a local poetry reading, the day before I had plans to go to New York City with my best friend. These things ALWAYS happen at the least convenient times.

Bob (have I mentioned how wonderful he is?) was in the office and went above and beyond the call of duty on Friday. He drove to my apartment, collected my old clunker wheelchair, took it to the shop, installed new batteries and cleaned it all up so it was not covered in mold and dirt. Oh, did I tell you about my upstairs neighbor’s fish tank which sprung a leak last week, directly over my living room where I store this clunker chair? So, the chair was NOT clean since my ceiling had a dripping hole in it above where the chair sat.

But I digress. This post is about how technology has changed in my life. Not about how much I currently despise the smell of mildew, spackle and paint.

I am grateful to have my old wheelchair in working order while my newer chair is out for repairs. It will be a week until the parts come, so I am glad to be sitting in a chair which at least fits me -even if the armrest and back cane are bent and the joystick is loose. And this chair has a seat elevator, which means I am much more mobile than I would be in a loaner chair.

A seat elevator is not a luxury in my life. To me, a seat elevator means I can independently get mugs out of the cupboard and get afternoon tea without assistance. Have you ever been thirsty and not been able to get a drink because you couldn’t reach a cup?

A seat elevator means I can raise myself up into position to use my sink and brush my teeth without needing a spit cup. Have you ever used a spit cup? Do you know how gross they are?

A seat elevator means I can get onto the toilet in an emergency if one of my Personal Assistants is late and I can no longer ‘hold it.’ Granted, I would have to take a pair of scissors to my pants and underwear, but I’ve done it before. How long has it been since you cut off your pants so you could get on the toilet and avoid wetting yourself in the chair you must rely on for mobility each and every day? Four years, in case you want to know my number.

My seat elevator is an example of complex rehabilitation technology, or CRT. In the United States, funding for CRT is in jeopardy because Medicare is attempting to change regulations related to how we obtain CRT. Unless Congress takes action, these rules will take effect on January 1, 2016. Most insurers take their cues from Medicare regulations, which is why these rules need to be fixed.

I am not an expert on this issue, but thankfully there are several advocacy groups which are leading the charge to protect our access to the technology which maximizes independence and function in my life, and the lives of others who rely on CRT. Groups such as United Spinal Association and their Advocacy Alliance, the National Registry of Rehabilitation Technology Suppliers, the National Coalition for Assistive and Rehab Technology, and more have been pushing Congress to pass legislation which would prevent competitive bidding pricing to CRT.

You can learn more about this issue using any of the links I provide above. If you or someone you care about is impacted by CRT and relies on CRT to function, I urge you to become involved as an advocate. Elected officials need to know this is an important issue and the only way they will know is if you contact them. If your legislators have already signed on to support the bills, send them a message thanking them.

And if you think this issue doesn’t apply to you – remember, you are just one stroke, one car crash, one injury away from being a part of my minority group. You’ll want access to this technology when the need arises. Because if you live long enough, you will need the technology.





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