There once was a time when I looked forward to getting a new wheelchair. It was thrilling to retire my used metal friend that had been scratched, spilled-on, dented and tweaked in its dutiful job of getting me around for at least five years, per insurance rules. I looked forward to finding a shimmering new metal friend with a smooth coat of paint, unbent frames, fresh springy foam, tight hinges, unstripped screws, gunkless casters and axles free of rust — a chair that actually fit my body after several years of the unavoidable shifting of flesh and bones.

As wheelers, we know getting a new chair isn’t all about aesthetics. When you use a chair 24/7/365, rain or shine, for all activities, it is crucial to update it for health, productivity and to prevent pain and injury. We want to feel in flow with our chairs, and not be constantly fighting them. But what used to be a fresh beginning has sadly become an unreasonable, disheartening slog.

Between the complex referrals needed just to start getting a chair, the absurd difficulty of scheduling all the needed players, and the unreasonably short appointments, you are exhausted before you even figure out what chair you want. Then, with scarce demo options and limited trial windows, you are on the clock to decide — only to at last make a decision and find out that insurance won’t cover it, the supplier can’t order it, or everything that works for you is considered “custom” and will cost you thousands out of pocket. Then it’s back to square one — and all this time languishing in equipment that is failing, painful or slowly distorting your body.

Look, if I ordered a bedazzled, gold mini-Porsche built with Magic Eye rims, a diamond seat belt, auto-fireworks, and an insulated Bloody Mary holder for my pet capuchin monkey, then fine, I understand an insurance company saying, “Um, maybe you can cover that.”

But appropriate measurements? Lighter materials to prevent torn rotator cuffs? A contoured cushion to prevent deep pressure sores? These should not be “custom.” Getting the equipment we need to maximize our health and productivity should be the standard; sadly it has become a privilege.

For transparency’s sake, my private insurance recently offered $1,500 of coverage for a new chair. Given the five years they expect me to use the chair, that works out to $300 per year — about one-twentieth of what they make off my premiums in a year — for the primary thing I need in order to live. And the supplier could not tell me the full price negotiated with the manufacturer — so that I could pay the difference if I chose — only saying it was too expensive so they couldn’t order the chair.

I consider myself an empowered person … yet this makes me feel helpless. But that was my light bulb: If we accept their crumbs, then we have GIVEN them our power. And I can’t accept that.

It’s easy to forget about your power when you’re in the small, bunkerlike room of a wheelchair clinic, trying to make decisions before your time runs out. That’s when it is crucial to take a breath and channel the intelligence, expertise and voice of our entire disability community. If we just sit back and let the nonwheelers call the shots, we have little right to complain.

The federal government, state governments, insurance companies, manufacturers and suppliers make the decisions over what equipment options we have coverage for. And let’s be honest, we have plenty of evidence that our bodies aren’t their top priority.

So What Do We Do?

First, don’t feel bad if you’re not an expert on Medicare and Medicaid policies or you don’t know what Complex Rehab Technology or Durable Medical Equipment are. There are plenty of great organizations, like United Spinal Association and the National Coalition for Assistive and Rehab Technology, who can get you up to speed quickly. (See below.)

Second, remember that we know our bodies best, and it is our responsibility to get to know our adaptive equipment intimately and to articulate our needs. The reality is, CRT isn’t rocket science — it is built to be user-friendly. Watch and learn when a tech works on your chair, and try it yourself at home when you can.

Third, treat the process like a collaboration between you, the physical therapist and the supplier rep, because they are our advocates too. Write down issues and needs, and do not leave until they have been addressed. If, sadly, you have someone who isn’t listening to you, respectfully say so, or request a different therapist. It’s not about being pissy and entitled but, rather, self-aware and assertive. A good PT or supplier rep will welcome your insights, questions and engagement.

Fourth, remember that we’ve been disempowered from making decisions about our chairs and getting transparent info about equipment options. How many times have you been told by insurance or a supplier that “we’re still working on it,” with no specifics? Over time, many of us default to do-it-yourself service and directly pay for parts because of this opaqueness and inefficiency.

Who would have ever imagined we’d need a LAW to say we have the right to fix our own chairs? But that’s exactly what led state Rep. David Ortiz to create Colorado’s “Right to Repair” law. Efforts like this are necessary because the system has developed in a way that prioritizes profit and mass production over common sense and personalization.

Finally, communicate. Ask questions, request details. Advocate. Educate. Connect. Learn from others who have been through the process. Make the dreaded call to the insurance company. Write a letter. Tell your family, friends and local newspaper. Go in person to meet with a member of Congress and tell them why this matters. We must take responsibility to act — for ourselves and each other.

I’ll be honest, I resist being a squeaky wheel. It gets uncomfortable for many of us, especially in a world where we constantly have to advocate or fight for more than what’s offered. It’s exhausting. But aside from our own flesh and bones, our equipment might be the most important element in our lives. Squeaking is fighting for our livelihood, our humanity.

Many of us know that even when we’re working with well-intentioned people from outside our community, there are gaps in awareness of how much our issues matter. Together, we must fill that gap. Unless we raise our voices collectively, the people pulling the purse strings will be off in the Caymans with their mini-Porsches and capuchins, and we’ll be painfully lumbering through the streets like on a bombed-out Saving Private Ryan steel tank, with derailing casters, shaky backrests, fragmented cushions and asymmetrical frames.

We deserve better.

For now, I’m still waiting patiently for responses about options for my new chair. While I wait, I’m researching CRT efforts, connecting with fellow wheelers about their issues and composing letters to my congresspeople.

Squeak … squeak … SQUEAK.

Learn how to advocate for the CRT you need with the resources available at United Spinal and the National Coalition for Assistive and Rehab Technology.