Right-to-repair laws can help reduce the burden of a broken wheelchair

I heard a story on the radio a few days ago about wheelchair repair. It was one I could relate to.

Because I have Friedreich’s ataxia (FA), I use a wheelchair. Recently, it took more than a month to replace a small, nonessential part of my chair. I had popped that same part off and snapped it back on myself many times. This latest time, I lost it, so I needed a new one.

I could not order it directly from the wheelchair manufacturer. I had to go through the authorized local dealer because that is the manufacturer’s policy. In my case, the dealer is a small mom-and-pop business, and I genuinely like them. Still, they insisted on coming out to install it, and charged me to do it, which was frustrating because I could have put the part on myself. I also paid more than I think I should have for such a small piece, but I needed it.

But, when it pops off again — and I know it will — the dealer will come out for free. I probably will not want to wait. If I can, I will take a picture, let them know what happened, and fix it myself.

People who do not use wheelchairs may think a repair delay is just an inconvenience. My own repair problem is frustrating, but it’s nothing compared with what I heard in that news story. One woman stayed in bed for months because the steering on her wheelchair broke and the repair companies made her wait. To me, that is unbearably inhumane.

For wheelchair users, a broken chair can sideline work, school, medical appointments, grocery shopping, and safe movement at home. The process can feel stacked against the person who needs the repair. You may wait for an appointment, a technician, insurance approval, a part, and then another visit to install it. The problem may not even be complicated. It might be a joystick, a wheel, a battery, a wire, or a small part like mine. But if the manufacturer controls the part or the software, wheelchair users would not have a real choice about who fixes their chair.

That lack of choice matters. It can turn a simple repair into weeks of isolation and make people feel powerless over equipment they depend on every day.

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I do not think anyone should have to beg for mobility. A wheelchair is not a luxury item. Its use is tied up in a person’s sense of freedom, safety, health, and dignity.

That is why federal and state repair laws in the U.S. matter so much. Right-to-repair laws can push manufacturers to share the parts, tools, software, and information that owners and independent repair shops need, and could help get repairs done faster, instead of forcing people to wait for an authorized provider.

Some state proposals and laws may also give wheelchair users stronger protections when repairs take too long. They require clearer timelines and require repair companies to communicate better. Some may even require shops to provide a loaner.

A bill introduced in Congress last year, HR 5039, would also require manufacturers to make parts available to users and repairers. That would not solve every problem, but it would recognize what is really at stake. When a wheelchair breaks, a person’s life can grind to a halt fast. The law could help kick-start it as quickly as possible.

Maybe the next time I lose a small, easy-to-repair part, I will be able to save time and money by ordering it directly from the manufacturer. If you have the time, I hope you will let your representative know that you would like them to support or co-sponsor the right-to-repair legislation.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.