Have you ever felt confused about whether the label of disability applies to you? You might have a sinking sense inside you that you are disabled, but you’re unsure whether you have the right to claim this label. For so many reasons, it is completely understandable to experience doubt around your relationship to the word “disabled”. Claiming disability as part of your social and political identity can be powerful and liberating. Let’s talk about what makes that hard.
Defining disability
The United States government defines disability in specific and rigid ways. A huge part of this comes down to an individual’s ability to work and to earn a living. The logic is something like, if you can support yourself through wages, then you don’t need the government to provide you disability benefits. Another part of this is healthcare utilization. In other words, how long is your medical record? If it’s as long as a college thesis, or possibly even reaching Infinite Jest proportions, then there’s a good chance that you are disabled or chronically ill. There are major limits to both of these parameters, though. There are plenty of people who hold down a job and pay the bills not because they can but because…well…they have to. They’ve been expected all their life to be independent, to have no needs, to be a provider. If you have chronic exhaustion or chronic pain, or if you spend most of your free time either resting, attending doctor’s appointments, or tending to your physical or mental health needs, then you might have a disability or a chronic illness.
When it comes to healthcare utilization, I personally one of those oh so lucky ones with a Proustian-length medical record that has followed me around for my entire adult life. If anyone were to doubt me, I can prove that I have high medical needs. Just look at all the blood tests, the x-rays, the MRIs, and the appointments with specialists. No non-disabled person would go to the doctor as much as I have—if they did, they would probably be diagnosed with hypochondria! Not everyone who is disabled has a long medical record, though. The reality is that having access to the healthcare system is a privilege. Some people don’t go because they don’t have health insurance. Some may be afraid to go because they fear deportation, or institutionalization, or forced medication. Others have had bad experiences with doctors, so they drop out of seeking care altogether. Some with a rare condition or an unusual presentation of symptoms may have been unable to receive a diagnosis, and along with it, treatment. There are some conditions for which the Western healthcare system doesn’t have much to offer. If you have an autoimmune disorder, or endometriosis, or treatment resistant depression, you have resorted to herbal medicine, yoga therapy, or a whole host of alternative treatment modalities, leaving you without that shiny gold ticket to a federal disability determination, a medical record full of notes from M.D.’s, P.A.’s, and N.P.’s, using their credentials to validate your symptoms in the form of a diagnosis.
‘Invisible’ disability
I used to say that I had an invisible disability. It’s true that my disability may be invisible in certain situations, such as when I am sitting down, or standing still, or hiding my hands below my lap. There are other situations in which my disability is painfully visible: when I’m walking barefoot, or taking on and off shoes. I recently re-connected with a classmate who I went to college with. I hadn’t seen him in at least 15 years. The first thing he said to me when he saw me, before we’d hugged or said hello, before I’d passed through the threshold of the front door into his home, was “I remember the distinctive way that you walk”. He may not have been aware that he was calling attention to my disability when he said this, but he was, of course.
I have come to realize that my disability was never invisible, though. It was ignored. I experienced medical neglect as a child, delaying my diagnosis until I had suffered severe deformity in some of my bones. Within my family system, my disability is often referred to as “not a big deal” or “normal”. When I visit with doctors, however, it’s not uncommon for them to give me a physical exam and then tell me that my deformity is some of the worst they’ve ever seen in a person my age, and that it never should have happened. It was easily preventable. If my parents would have taken my pain seriously. As a young adult, I wanted nothing more than for my symptoms to be invisible. I pushed through pain when I had it. I did things that doctors advised me not to do, just to prove that I could. I exercised and went dancing and went to parties and went on dates. for a long time believing that physical fitness could conceal my disability. So could achieving hot girl status. I pursued desirability as an antithesis of disability, modeling what I was modeled and taught since a young child getting bullied on the playground.
On a day-to-day basis, most people do not mention my disability. That made me believe that I was winning at hiding. But over the years I have had plenty jarring experiences in which a stranger saw me for who I am, and they blew my cover. Often it’s children who call me out. They don’t know how to be anything other than honest. A friend, a family member, a lover, and colleagues can easily go years without mentioning my deformity. Then a child comes along who has never met me before and asks me: “What’s wrong with your feet?” or “Why do you walk like that?”. It can be jarring when this happens. I have to wonder: “Why can a young child name what so many of us can’t, or refuse to?”
Internalized Ableism
This avoidance of mentioning disability is linked to ableism, of course. Many people feel that it might be rude to mention any imperfection, difference, or deformity that’s present in someone else’s body. Many people in Western society don’t have the language to speak about illness or death, or doing so may bring them discomfort. In my family of origin, mentioning my disability means accepting blame and guilt. It also means acknowledging mental illness, marital dysfunction, financial stress and my father’s struggles with addiction—all factors that led to my own needs being denied or ignored. If you have pain or needs that have repeatedly been denied or ignored, then you may have a disability or a chronic illness. If you were neglected since a young age, then you likely have internalized this treatment and applied it to yourself. You may be minimizing your own needs in order to preserve certain relationships, keep a job going, or to avoid social rejection.
Forming Communities of Support
The experience of disability and chronic illness is so often isolating. Existing each day in a world that caters to non-disabled people, without communities of support, many of us struggle to find the language to talk about the reality of experience in disabled body-minds. The Pain Friend support group is forming to provide a space for connection, witnessing each other’s pain and suffering, and joining in somatic and creative practices together. Just like so many other binaries, I believe that the binary between “sick” and “healthy”, “well” and “unwell”, “disabled” and “non-disabled” needs to be troubled, and questioned. If you are unsure whether you ‘count’ as disabled or chronically ill, please know that you are more than welcome here.