When I was diagnosed with axial spondyloarthritis (axSpA) in 2013 I was determined to be a poster child for the condition, which is a type of inflammatory arthritis that causes debilitating back pain, among many other problems. At one point I announced I would hike across the country to raise awareness. I was determined to overcome my disease.
That was not to be my reality. Within a couple of years of living with axSpA, I was disabled and no longer able to work for pay, much less hike a mile. Dreams and plans I hadn’t even realized I could lose were just gone.
Play professional soccer? Impossible.
Climb the career ladder? Unthinkable.
Become a parent? Unlikely.
Financial stability? Forget about it.
I became deeply ashamed of my body-that-couldn’t. Suddenly I was value-less, dependent on programs funded in part by my previously paid taxes.
Combined with subconscious messages that living in pain was somehow my fault, that I had somehow asked for my disease, and that I wasn’t trying hard enough to get better, I was in awful shape mentally, too.
Nearly a decade after my diagnosis, I have not overcome my disease. But I have overcome society’s constantly reinforced internalized ableism. And I became that axSpA poster child —without ever having to hike across the country.
What Is Ableism, and Why Should You Care About It?
Ableism is the mindset that being nondisabled is normal, while everything else is defined around that in varying degrees of less-than. It’s similar to how sexism identifies men as the norm and everyone else as secondary. But while most of can recognize sexism (at least overt sexism) these days, ableism can be a lot more subtle and sneaky.
This is because, simply put, our society has been built around a medical model of disability.
Medical disability is roughly defined as a condition that impairs one or more functions of daily living, such as bathing, preparing food, getting dressed, using the bathroom, cleaning, being able to work. Pretty much anyone living with a chronic disease or medical condition fits this definition.
Under the medical model of disability, people are expected to adapt to a world that isn’t made for them, where society’s focus is on curing a functional impairment or disease, or making a person “normal” (i.e., nondisabled). This approach suggests that disability is the barrier to living a full and wholesome life.
The social model of disability, however, states that someone’s impairment isn’t necessarily the barrier. Rather, it’s societal obstacles that keep someone with a physical, mental, or cognitive impairment from functioning and participating equitably in society.
In other words, it is our society that disables a person who lives with impairment(s).
For example, someone who can’t climb stairs is not a failure. Rather, the failure lies in the fact that there are only stairs in the first place instead of a completely level entrance or a readily available ramp or elevator.
The social model of disability looks to dismantle ableist structures rather than force impaired people to “overcome” such obstacles.
These are just two disability models of several, but they’ll do for this essay.
Embracing My New Advocacy Identity
So back to my disease. Of course, I’d love a cure for axial spondyloarthritis, but the reality is that it has already caused permanent spinal damage. I’ll always live with that. At the same time, I can’t just pause my life and wait for a cure to happen. I am disabled now. I live my life in that reality now. And even if my axSpA were cured tomorrow, I would still live with depression, anxiety, and PTSD.
Rather than hate my reality, I have grown into my identity — and yes, it is an identity — as a proudly, professionally disabled person.
Rather than feel ashamed for not being healthy or able to work for pay, I have chosen to advocate for more accessible health care and treatment for chronic diseases, as well as a dismantling of ableist structures and attitudes that cause so much harm.
Pride Over Shame
Shortly after my axSpA diagnosis I was planning to hike across the country and slap my disease in the face.
Years later, only after learning from disabled activists like Alice Wong, Rebecca Cokley, Imani Barbarin, Mel Baggs (who passed away last year), and Judy Heumann did I realize this:
Fighting to do everything but accept a thing that will be part of me until I die was doing nothing more than preventing me from being whole.
Fighting against accepting something that is undeniably part of me was only fracturing me further.
It would be like trying to fight against the fact that I’m a queer, trans person. We already know conversion therapy is terrible and doesn’t work. Why, then, should I beat myself up about being disabled when it is just as much a part of me as anything else? When it informs how I move through and understand the world?
I needed to come to this realization in my own time: Being disabled can be a status of pride, not shame.
A Wheelchair Lesson in Ableism
When I first became a part-time wheelchair user, it was years after I could have benefited from using one.
I talked myself out of using a wheelchair for so long because, well, because I could walk. I believed the myth that that the only people who use wheelchairs aren’t ambulatory. What’s more, society has led many to believe that wheelchairs are a sign of giving up, of not being “normal,” of being less-than.
I had internalized this message, especially as a former college athlete who was more physically capable than average. The only time I had ever used a wheelchair was as a college athlete after an injury. My awful experience being pushed around in that clunky, massive, medical-grade wheelchair during a museum visit — my teammates talked me into using it instead of crutches — left an awful taste in my mouth. I was invisible and nothing more than a piece of furniture. I hated being visibly incapable.
Ableism can be sneaky that way, convincing us that there’s a right and a wrong way to exist.
Ableism creates this unspoken rule book for who can and can’t use mobility aids.
Ableism stigmatizes the tools that help disabled people do more.
Fast forward 10 years later, when I fell in love with my new-to-me, custom-fit wheelchair. It reduced my pain and fatigue so dramatically that I was able to be social and attend events again. The wheelchair made the difference between my staying home and participating in life outside. It meant literal freedom and independence — a complete 180 from my first wheelchair experience back in college.
Advocating Against Ableism
Sadly, one of my doctors believes my wheelchair means I’ve somehow given up. He refuses to hear me when I share how much it improves my life.
So much of society sees mobility aids this way, so it’s no wonder people in the chronic disease community are afraid of using them. It’s no wonder that doctors encourage delaying their patients’ use of them.
Having learned disability history and culture, I now know that being disabled — which means benefiting from using mobility aids — is not a character flaw. However, being ableist — like denying the benefits of mobility aids — is.
The year 2020 marked the 30-year anniversary of the Americans with Disabilities Act. With Supreme Court Justice Ruth Bader Ginsberg’s death last year, many disabled activists were reminded that she penned the winning argument for the 1999 Olmstead decision, which essentially ruled to desegregate disabled and nondisabled people in many areas of society. There are many more policies and decisions that champion and support disability rights, including Section 504 of the Rehabilitation Act of 1973, which was only funded and enforced after the longest nonviolent sit-in in U.S. history (26 days) in 1977.
Many in the chronic disease community don’t know this history. I used to be one of them. It took several years before I fully understood — and then finally embraced — my identity as a disabled person. This was not just because I finally understood ableism as a general concept, but also largely because of the arguably intentional lack of education around disability history, culture, and justice in our society.
Which leads me to this. Where do you start if you want to learn more about ableism and disability issues?
Here are just a few I recommend:
- Watch the documentary Crip Camp (it’s on Netflix)
- Follow disabled activists on social media and read their work (I mentioned some above)
- Read about: Willowbrook State School, Dr. J. Marion Sims, Nazi-forced medical experiments, Section 504, inspiration porn, the social model of disability, hobbling of enslaved people, and identity-first language
I can almost guarantee you that once you start learning about disability history, justice, and culture, you will look at the world completely differently.
I am disabled. I am proud of who I am. I will keep educating and advocating to make sure others like me can feel the same way about themselves — not just from their own self-acceptance (though that is important), but because society values our lives and our worth equally.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
