Crip Buzz: There is No Replacement for My Wheelchair


When Gina Schuh wrote “My Wheelchair is My Legs, When it Breaks it IS an Emergency!” for Pushliving.com, the Gilbert, Arizona, C5-6 quad with a law degree may have set off a revolution. Here is an excerpt:  

Gina SchuhMy wheelchair replaces my legs because they retired in 2003. I rely on it for 100 percent of my daily mobility. THERE IS NO REPLACEMENT FOR MY WHEELCHAIR. Time to pee? Not without my wheelchair. Time to cook dinner? Not without my wheelchair. Time to go to the doctor? Not without my wheelchair. Plans to explore the world? Not without my wheelchair. Have a life? Not without my wheelchair. My wheelchair is my greatest accessory … and the worst. My wheelchair can either enable me to be mobile or disable me even more.

Just imagine breaking your leg, going to the doctor, and they tell you it will be almost a year before you can have surgery and you are forced to deal with it because you have no other option. Even three months would be insane! Well, that happens to wheelchair users all the time. When our wheelchair breaks, there is an utter lack of urgency for maintenance and chair replacement. Assistive technology providers have zero accountability for grossly negligent business practices including charging for services or parts that were never provided. Yeah, check your bills, friends.

Most people think about the mobility side of having a broken wheelchair, but it comes with an emotional side. When you can’t get out of your house because of your wheelchair, you feel as though you live on a deserted island, isolated and alone. It’s terrible that people are forced to wait months for replacement parts and repairs. THERE IS NOTHING on my end that I am doing to delay time. Money? I’ve got it. Prescription and doctor’s letter of necessity? I’ve got it. Insurance? I’ve got it. I would be willing to drive to another state to get my wheelchair! Still, it is out of my control, and I am forced to deal with these monopolies who use insurance to manipulate the system.

Join the fight for appropriate legislation to tackle this issue! Read more here.

Read Schuh’s whole post at pushliving.com/voices-of-the-community-my-wheelchair-is-my-legs-when-it-breaks-it-is-an-emergency

We shared Schuh’s blog on NEW MOBILITY’S Facebook page on May 9, and the response was overwhelming. Here are a few comments:Frank-McMahonFrank McMahon: No question. A broken chair is worse than a broken car.Katerine-MacfieKaterine MacFie: Your experience sounds like my last dealings with [my provider]. Not only did I have to do pretty much everything for them, but cushion and seat selection consisted of 15 seconds on one option before they decided to go with that. I heard nothing unless I showed up in person, and even then they rarely knew what was going on. After I finally got my chair, I was treated like a burden. I gave up and started looking into ordering a seat cushion that doesn’t hurt and discovered every billable item on my wheelchair was, on average, 150-200 percent the listed MSRP on the manufacturer’s website.

If I could order from ANYONE else or do it myself, I would in a heartbeat. Hell, I did my own measurements for my current chair. Except insurance picks who I go through. It’s complete crap.Julie-CurryJulie Curry: I think it’s lame we, the wheelchair user, the insurance payer, have to use only the wheelchair provider THEY choose for these OVERPRICED repairs. So, if we are not satisfied with the quality of service we are SOL. Fifty dollars an hour for repairs!? This is ludicrous. Oh and I must add, these providers are NOT open on weekends.Michael-BernhartMichael Bernhart: Being a quadriplegic, I live in my wheelchair and with it being specialized I cannot get spare parts on eBay like someone commented here. I have to wait and wait. It is an emergency and stricter standards are needed.Sue-VilchezSue Vilchez: Time we take it to the Capitol, peeps … get ready to ROCH 2016. Check out United Spinal Association Advocacy Alliance (www.unitedspinal.org).


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