DENVER, Colo. — For more than 30 years, Bruce Goguen has been wheelchair-bound, and that chair has become a more prominent lifeline over the years as multiple sclerosis has continued to take away his mobility.
"When the only thing you can move is your head like that, every little thing is a big loss," Goguen said.
Disability advocacy has always been a big part of his life. He met his wife, Robin Bolduc, at a protest where they got arrested.
"Along the way, we've always been involved in public policy. Kind of core to our marriage I guess," Bolduc said.
As life has shown them how difficult it is to get Goguen's wheelchair repaired, they knew they needed to push for more permanent change. Historically, manufacturers of these chairs do not provide customers or independent repair shops with the parts, tools, software or paperwork needed to perform any repair services. The only way to get a problem fixed is to go through them, and it can take weeks or months.
"When Bruce doesn't have a wheelchair he is in bed and because he's not moving it risks pneumonia and it risks, of course, bed sores," Bolduc said. "Without the ability to repair Bruce's wheelchair, he could die. This isn't just a minor inconvenience."
This couple is a huge reason why Colorado has become the first state in the country to have a right-to-repair law, but their powerful story certainly came at a cost.
"Bruce got their newest wheelchair and it did not work with his head control system, so it was constantly breaking. So, he was in and out of bed, lost all independence," Bolduc said. "And the frustrating part is the first time we had a major breakdown, they decided it was a motor but they couldn't find a motor. This is like a national company, probably an international company, for a brand new chair."
The companies that predominantly control the multibillion-dollar power-wheelchair industry are owned by private equity firms. Those wheelchair suppliers have contracts with health insurance plans and restrict access to repair materials. Disability advocates say companies often wait until Medicare or insurance companies approve repair claims before ordering necessary parts, which aren't always kept on hand. This law requires them to provide customers with the tools and information necessary to fix their chairs.
Julie Reiskin, co-executive director of the Colorado cross-disability coalition, is proud of the progress Colorado has made but says it won't mean much if other states don't follow suit.
"All of these companies, they want to sell. They don't want to repair, and we need the government to make more policies so that it is more attractive to repair than to sell," Reiskin said. "We're hoping that our attorney general will step up. He has a good record on consumer protection and we're hoping that he'll see our community as worthy of that protection."
She says they need to be held accountable for both providing the specs and information needed to repair a chair, and also by manufacturing the necessary parts.
"And the right to repair doesn't mean anything if a manufacturer in Ohio or wherever they are isn't producing parts," Bolduc said.
"What a lot of these companies do also is they will sell a chair and then they start changing stuff every year and then they will say, 'Oh, now you need a new chair because we're not serving the parts anymore even though the chair is totally functional,'" Reiskin said. "If they are going to sell a chair, they need to continue to manufacture all of the parts for at least 10 years."
When something needs to be fixed, there are few temporary options available for people who use a wheelchair.
"And for a lot of us, that use what we call complex rehab, our chairs are made to our body specifications. So, it's not like you can go rent a chair," Reiskin said.
Power wheelchair users have long been fighting for their right to repair. It's something that has infringed on their mobility for decades and they say still does in 49 states.
"Reminds me of something that...Herbert Humphreys said," Goguen said.
"So, the test of a country and I'm paraphrasing, so the test of a country is how it treats its most vulnerable citizens," Bolduc said.
They say now is the time to change how those citizens are treated in this country and put lives before profit.
"This is a step to rectify the situation so that we're treated with dignity and respect," Bolduc said.
According to the state of Colorado website, usually, an owner of a powered wheelchair must seek diagnostic, maintenance, or repair services of the wheelchair from the manufacturer.
They say starting January 1, 2023, the act requires a manufacturer to provide parts, embedded software, firmware, tools, or documentation, such as diagnostic, maintenance, or repair manuals, diagrams, or similar information, to independent repair providers and owners of the manufacturer's powered wheelchairs to allow an independent repair provider or owner to conduct diagnostic, maintenance, or repair services on the owner's powered wheelchair.
A manufacturer's failure to comply with the requirement is a deceptive trade practice. In complying with the requirement to provide these resources, a manufacturer need not divulge any trade secrets to independent repair providers and owners.