Stolen and Gatekept: A Crip’s Journey with Wheelchairs and Insurance
Note: this is an abridged version of a longer story. If you want to read the whole thing, click here.
Of all the wheelchairs I’ve ever owned, I want to tell you about my favorite: the Quickie P222 SE. Boy was it a sexy beast. It was sleek, fast, and extremely functional. It was long: that’s something I remember first noticing about it — not in the way of love at first sight, but more along the lines of meeting someone that you find loud, or stubborn, or arrogant or superficial, and then becoming best friends months later.
When I first met it, I didn’t like that the wheelchair was long. For years, I had grown accustomed to a very hip, compact, mid-wheel drive Quickie QM-710, which had a zero-inch turn radius and could pivot in place. Mid-wheel drives tend to be the comfiest rides, with excellent shock absorption and an overall smooth experience. They’re by no means perfect though. A smooth ride sacrifices speed and power, and mid-wheels are a little less durable all around. They break down more easily and require more appointments with wheelchair companies if you’re not savvy enough, as I am not, to repair things yourself (if there’s one type of company I want to minimize my interaction and time with, it’s a wheelchair company. That’s a topic for another day).
A brief sidebar. Yes, there is a wheelchair model called Quickie, and no, they have not rebranded.
Anyway, a few weeks into driving the P222 SE, I was hooked, and I got used to the small, non-zero turning radius, and indeed, its length. This was a rear-wheel drive chair that packed a punch when it accelerated. It angled back a little if you went from 0 to max speed quickly, in like a motorcycle wheelie way, so I could always star in my own little crip action film whenever I wanted. It got me where I needed to go and didn’t once break down on me. I trusted it.
I’m not sure nondisabled people fully understand the trust that you build with a mobility device, and how powerful that is.
So, when my beloved P222 SE was stolen at 8 o’clock in the morning on a Tuesday in the middle of the pandemic in 2021, you can imagine how my heart sank when I went to retrieve my wheelchair from its usual place and saw nothing. Emptiness. My mobility, freedom, my trusted companion, gone.
A little more context about this chair. Ever since I turned eighteen, being approved to get a wheelchair covered by medical insurance has become significantly harder than it was when I was a kid. I’m ambulatory, and — this may shock you, but medical insurance is not built to help disabled people. They have decided, in their benevolence and omniscience, that a person doesn’t need a wheelchair if they can walk a little bit.
Hallelujah!
Thanks be to Kaiser for showing me the truth about my body. Here I was, disabled, thinking I needed a wheelchair to get around! They have shown me the light, and I am grateful. I am…normie??
Thousands of people in the United States alone who need wheelchairs every year don’t get them, because the technical qualification for needing a wheelchair, in the eyes of insurance companies, is the answer to the following question: “are you able to get from the bedroom to the bathroom?” If not, congratulations, you you get a wheelchair. If you can get from the bedroom to the bathroom, however, you don’t get a wheelchair. This is real.
Insurance companies are the unwanted gatekeepers of disability.
Meanwhile, micro mobility — you know those little E-bikes that block sidewalks and explode in apartments in San Francisco — is the latest trend that tech lauds as the radical future of movement and accessibility.
Because I walk, I have trouble getting wheelchairs. And I’m like, hella disabled. To qualify for the P222 SE in the first place, I had to meet with an occupational therapist, whose job it is to determine whether or not I am legitimately disabled. And, because I have the superhuman skill to — wait for it — get from my bedroom to my bathroom within my 500 square foot studio apartment, I needed to show some other reason that I might need a wheelchair to the institutions that would be in charge of green-lighting my freedom and mobility. Oh. You think this is determined in a conversation? No! This is an in-home evaluation. The occupational therapist, who is a good but corrupted person in a corrupt system, came over *to my home* and peered into my life in order to tell me whether or not I’m disabled. He saw I could walk ten feet from bedroom to bathroom. He analyzed my living conditions and my gait. It was invasive and unnecessary. The power dynamic was palpable when he walked into my apartment. I still think about that moment.
People are so worried about the wrong person getting a wheelchair that they make it unreasonably difficult for anybody to get one.
I’ve heard stories of people who, in their in-home OT evaluations, were disqualified from receiving a wheelchair because their home had steps to get in. Can you imagine? You’re forced to take an inaccessible apartment because it’s the only option, or the cheapest one, and then an OT comes and tells you that you are now unable to qualify for a wheelchair because you’re living in inaccessibility? This is real. This actually happens. The OT told me.
In the end, I was approved for the chair because of a skin graft on my heel that breaks down when I walk too much and honestly that feels like invasive and unnecessary information I’m giving to you, dear reader, but I’m leaving it in because I know you’ll be curious and I guess I’m trying to prove a point: when you question why somebody needs accessibility, you are only perpetuating the same oppressive rhetoric of real institutions like medical insurance companies.
Trust disabled people when they say they need something.
I’m getting too lofty, aren’t I. Ok. No more morals, back to the story.
The night after the morning my wheelchair got stolen, it was raining. It was then, as I lay in bed listening to the rain, that I remember crying for the first time — not because I had lost my chair, but because I was worried that the person who had it wouldn’t know how to protect the chair from the rain. I imagined it out on the streets, wet, electronics exposed. And I cried. Disabled people love their mobility devices.
In the coming days, I had to file reports, and I scrubbed through my apartment’s security cameras to find the moment of the theft. Sargeant Spagnolo was the detective assigned to my case. He did absolutely nothing, but he did have a hilarious name. I contacted my renter’s insurance in the hopes of easily and quickly replacing my wheelchair.
I’ll say it. I was looking for a quickie.
Nothing in the wheelchair world is easy or quick. Renter’s insurance wouldn’t kick in unless medical insurance first denied me. So, I begrudgingly re-opened the medical path: the doctor appointment to schedule the OT eval to ask insurance to approve my request. The OT, who was not a pleasant person to work with, nor did I ever feel he was on my side, said it was highly unlikely they would approve me again because the last approval was so tenuous, and it was within a five year window — yes, even though it was stolen, and insurance had approved the first one. With that information, and with a severe distrust in the system, I requested a denial that I could show renter’s insurance, which was easily, and — I assume, in my imagination of the insurance company’s evil coven, happily — granted. This whole process took a number of months — all the while I was without a chair — and I was finally able to present the denial to renter’s insurance. It kicked in, and they sent me money within two days.
Just my luck: by this time, Quickie had discontinued the P222 SE, so I was unable to replace my favorite chair. I was really sad to lose that forever. But, I researched other options and found a chair called the Bounder, built by 21st Century Scientific. The Bounder is an amazing chair. And being a high-end chair, it’s not something that would generally be covered by medical insurance, so I decided to use the situation to what little advantage I could find and get the Bounder. Most chairs break down in 5 to 7 years. The Bounder is one of the only chairs on the market actually built well and could last 30 years. Bounders are custom made, and it would take a few more months. But I decided it was worth it.
Sergeant Spaghetti called. He thought he saw the chair listed on an online marketplace. He tried to buy it himself, but someone beat him to it, so evidently that’s all he was willing to do.
All this time, as I learned to scrape by without a wheelchair (which admittedly was only possible due to pandemic shut downs and a new life living mostly at home), I wished desperately that I had a functional backup chair. However, it’s complicated: not just any chair will suffice. As you can imagine, because insurance has the bedroom to bathroom mandate, a majority of wheelchairs are built for the home, not community use. I travel miles a day to go to jobs, see friends, get groceries, and live my life. I use transit, am a frequent and long-distance pedestrian, and I don’t drive. Those in-home chairs that go 4mph simply don’t work for me. I dream of a day when I have more than one operating wheelchair that I can use for community use, for this exact reason. Come on, Sergeant Ravioli. Find! That! Chair! ♿️
My wheelchair was stolen on March 2, 2021. On February 21, 2022, I got my new Bounder power wheelchair. It took a year.
Whenever I write about disability I include a Venmo link. Maybe someday I’ll tell you about the disability tax, and all the extra costs society puts on accessibility, and therefore disabled people. Feel free to help out. 🤗
I am not the only one affected by these policies and problems. I dream of a system where everyone can get wheelchairs if they need them. And god forbid the user has a backup, because it could be damaged, or totaled, or stolen.
And Sergeant Rigatoni, though on the case, might not be of much help.