I visit my pain doctor on a monthly basis. Sometimes I get trigger point injections ― shots of lidocaine into my muscles to stop them from spasming, a frequent occurrence due to my degenerative collagen disorder. Hypermobile Ehlers-Danlos syndrome also causes my joints to frequently dislocate, randomly and without warning, causing severe and constant pain.
But the main reason I make this 40-minute drive every month is to pick up a paper prescription for my pain meds; they’re considered a controlled substance, so the law forbids me from refilling them digitally. And every time I make the trip, I’m reminded that even the medical world isn’t designed for sick people like me.
It starts when I pull into the parking lot and decide to leave my wheelchair in the car, even though I’d obviously rather use it. It doesn’t matter whether my hips are dislocated that day or not; I never use my wheelchair here.
The building has an elevator I can take to the second-floor office, but it shudders and judders the whole way up, so I use the stairs. I’m then met with two heavy glass doors, and if I were sitting in my chair, the handles would be too high to reach, the doors too heavy to hold. The fact there isn’t an automatic door opener here has always struck me as strange.
In the waiting room, there’s no space to park myself when seated in my wheelchair; I’d end up inevitably being tripped on. Plus, the doorway between the waiting room and exam rooms is so narrow that wheeling through would be an impossibility (and no automatic door openers here, either). The exam tables aren’t equipped to motor down to my level, which means I’d have to stand up out of my chair to clamber onto the table. The entire experience would be an effort in exhaustion and inaccessibility, so I tough it out on foot instead.
In many ways, I’m fortunate I can decide to leave my wheelchair in the car, because a depressingly high level of inaccessibility has become the norm when it comes to 21st century medicine. As a partially ambulatory disabled patient with a host of chronic health conditions, I regularly run into what feels like a never-ending gamut of issues every time I visit one of my practitioners. And I’m far from the exception to the rule.
“I’m fortunate I can decide to leave my wheelchair in the car, because a depressingly high level of inaccessibility has become the norm when it comes to 21st century medicine.”
Inaccessibility issues often start long before disabled patients make it to their appointments. I can drive myself most days or schedule my appointments when my fiancé can drive me ― and good thing, because I am never asked or given recommendations about transportation (except to be told I can’t drive myself home post-anesthesia). Patients with disabilities who aren’t partially ambulatory like I am often have to figure out the logistics on their own, which means complicated mass transit systems or paying out of pocket for paratransit rides. Paratransit riders often have to book 24 hours in advance, usually by telephone, and most agencies make riders pay with cash or a paper voucher. If a patient is d/Deaf, they might need a teleprinter/teletypewriter ― a specialized text telephone that doesn’t come cheap ― to schedule the ride. Requiring cash payment means disabled people now have to take the additional step of making a separate trip to the bank in order to be able to pay.
And before you suggest them, ridesharing options like Lyft or Uber are a far cry from a solution. They’re often either inaccessible or rife with discrimination. Uber was sued in 2018 for its fleet’s lack of wheelchair-accessible vehicles. Another 2018 study found that Lyft provided a wheelchair-accessible vehicle in only three of 65 attempts to request one ― a disturbing 95 percent failure rate. Uber managed only 27 out of 49 attempts for a WAV. In all, researchers located a WAV in just 26 percent of attempts (compared with a 100 percent success rate for non-accessible vehicles).
Medical offices themselves are an issue, too, as is the equipment inside them. Disabled patients often have difficulty using X-ray machines, rehab equipment, scales, scanning devices like MRIs and even just getting up on exam tables. Federal civil rights laws require medical offices to be accessible, but few are — and the ones that exist are hard to find. A 2012 study of 2,389 primary care facilities in California found that a mere 8 percent were equipped with a height-adjustable exam table, and less than 4 percent had an accessible weight scale. A 2013 telephone survey of 256 specialty offices across four U.S. cities for a fictional wheelchair-using patient found that 22 percent of practices reported they couldn’t accommodate the patient. Amazingly, the clinicians who refused to accommodate the fictional patient also failed to recognize that their refusal was illegal under the Americans With Disabilities Act.
“If you aren’t disabled and haven’t thought about these issues before, it’s time to take a look around. After all, disability is eventually guaranteed to all of us.”
Those very same ADA laws also mandate that hospitals receiving federal funding provide deaf patients with help to ensure effective communication. However, while I frequently see hospital signs declaring patients have easy access to other language interpreters, I’ve never seen one mentioning the availability of an American Sign Language interpreter. And, as a patient, I’m never asked about any hearing issues, even though I’m hard of hearing as a result of jaw surgery in 2013 (and far too many rock concerts without earplugs). I’m rarely offered alternatives to spoken communication, like written pamphlets, and I am never asked about learning disabilities like dyscalculia, dyslexia or auditory processing disorders.
Doctors carry their own deeply ingrained assumptions about disability, and non-disabled doctors simply lack the understanding of what living with a disability actually entails. Research has shown that, as a result, disabled patients receive inferior health care, including less information about prevention and fewer screening tests, such as Pap tests and mammograms. A 2006 study showed disabled women with early-stage breast cancer were less likely than non-disabled women to undergo breast-conserving surgery. Those who did were still less likely to receive standard radiation therapy. Unsurprisingly, disabled people diagnosed with such cancers were significantly more likely to die as a result.
Patients with intellectual disabilities (whether the diagnosis is accurate or not) are significantly more vulnerable in medical settings than the general population, and their decreased life expectancy reflects that reality. Studies show that less than 20 percent of medical schools teach their students how to talk with intellectually disabled patients about their needs. Delays or problems with diagnosis or treatment are the No. 1 reason why individuals with intellectual disabilities die at least a decade earlier than non-disabled patients on average.
Inaccessibility and ableism are the name of the game when you’re a chronically ill patient with a disability. And as with so many issues involving disabled people, we have to start at the beginning to enact fixes. Disabled people need to be involved from the ground up. This means medical schools need to offer clear instruction that teaches future doctors how to interact with and examine disabled patients, but it also means that medical schools need to be more accessible when including and training disabled students to become future doctors. More disabled doctors mean a more widespread need and appreciation for accessibility ― for patients and for those giving care, too.
“Inaccessibility and ableism are the name of the game when you’re a chronically ill patient with a disability.”
As usual, this means our world as a whole needs to place a much higher focus on making the world more accessible. I’ve written before about how music venues and airline travel are widely inaccessible to wheelchair users, and medicine is no different. Our society hasn’t yet insisted upon accessibility as a bare minimum, and disabled humans suffer as a result. It’s an ouroboros of epic proportions: Disabled people are forcibly excluded, which is why non-disabled people don’t think to include us. It often starts in preschool or elementary school, when the buildings are inaccessible, and continues through high school and extends into higher ed. When we can’t pursue higher levels of education, we are excluded from job opportunities. Exclusion from job opportunities means we aren’t the ones in medical school, insisting upon education about how to properly treat us — and we aren’t the architects helping design accessible hospitals or doctors’ offices, either.
Disabled people make up 20 percent of the U.S. population, but 20 percent isn’t enough to enact change, no matter how loud we’re yelling. We need non-disabled people to join the rallying cry. If you aren’t disabled and haven’t thought about these issues before, it’s time to take a look around. After all, disability is eventually guaranteed to all of us. Old age will alter your mobility, your functionality, your ability to move and your autonomy. At some point, the heavy glass doors at your doctor’s office will stymy you, too. Wouldn’t you rather the world be an accessible place before that happens?
Ace Ratcliff lives with hypermobile Ehlers-Danlos syndrome, dysautonomia and mast cell activation syndrome, which all make for a particularly rebellious meat cage. Her advocacy is centered on intersectional feminism with a focus on disability rights.