It took me more than a decade to call myself disabled. When the label finally stuck, the pride it injected — and the thriving community that came with it — enriched my life.
At my sickest, I embraced my identity as disabled. Since then, the chronic illnesses that disabled me have improved, and now I’m being tormented by a bizarre question: Am I still “disabled enough” to call myself “disabled”?
According to the UK’s Equality Act, anyone who has a physical or mental impairment that has a long-term adverse effect on their ability to conduct daily activities is disabled.
The definition varies slightly between countries, generally setting a higher bar in relation to securing financial support from the government.
While the World Health Organization estimates that there are more than 1 billion disabled people globally, the number is likely significantly higher because so many disabled people do not realize that they belong in this category.
Some people with disabilities prefer person-first language. This article features the author’s preferences and reflections on using the word “disabled.”
The root of the problem is the struggle to find affinity with a word that has long been treated like a poisonous dart to avoid at all costs.
Growing up, I equated disability with being incapable or inferior, and now that I am disabled, this image is devastatingly othering.
With such a stellar reputation, it’s no wonder it’s a struggle to adopt the label with confidence and without shame. Internalized ableism is a powerful force.
“Because I’m constantly worried about being perceived as weak or inadequate by those around me, I subconsciously try to hide the fact that I have any physical limitations at all, especially with those I don’t know well,” says Lily Seibert, a New York-based publicist with long COVID and postural orthostatic tachycardia syndrome.
Having developed my long-term chronic illnesses — which include fibromyalgia, hypermobility syndrome, localized scleroderma, and endometriosis — as a teenager, I often did the same.
Burying my physical limitations in denial felt like the only escape from the inevitability of the label taking up permanent residence.
“When you’re able to go through life looking fully abled, it begins to feel as though you’re cosplaying disability, and there’s an intense fear of being seen as a liar or, worse, as though you’re having a laugh at ‘actually disabled’ people’s expense,” says Caitlin, a healthcare assistant with double-curve scoliosis, fibromyalgia, hearing loss, depression, and anxiety.
“I only label myself as disabled around close family and friends, who have seen me on bad days and understand the impact my conditions have on my day-to-day life,” she adds.
I first felt “disabled enough” in my mid-20s after meeting a group of chronically ill and disabled folks online. Their embrace fostered a sense of kinship with the label.
It didn’t trigger any earth-shattering life changes, but it provided a sense of self-assurance that I’d been missing.
“During the times when I feel like I can embrace the disability identity, it actually helps me by validating the fact that I have legitimate differences that impact what I’m able to do on a daily basis,” adds Seibert. “Acknowledging that I’m limited in certain capacities actually makes me proud in regards to how much I’m able to accomplish, even with obstacles.”
Securing accessibility in life felt impossible when I was just “sick a lot.” Then, disability became an empowering symbol through which I gained a loving community, accommodations at work, and informed support from my loved ones.
The waxing and waning nature of my numerous chronic illnesses has balanced out since I had excision surgery for endometriosis in 2021.
My pain levels dropped, my mobility levels increased, and I had a dose of what it’s like to have a normal person’s energy levels. It was electrifying.
But then I thought, “Am I disabled anymore?” I had accepted the label at my sickest, so what did it mean to be disabled and healthier than before?
Sometimes I feel like an invader in my own community.
I no longer need a mobility aid but regularly experience debilitating pain.
I no longer need constant medical interventions or medication but still need check-ins, and my health is far from matching that of a nondisabled person.
I don’t need strenuous interventions from counselors anymore, but my complex post-traumatic stress disorder is far from cured.
“Impostor syndrome occurs when someone does not feel like they have a right to claim the word ‘disabled,’” says Kaley Roosen, PhD, CPsych, a Toronto-based clinical and health psychologist at Toronto Psychology and Wellness Group. “This usually stems from internalized ableism in a society that demands we ‘prove’ we are disabled enough to ask for what we need or for specific accommodations.
“Unfortunately, limited resources and a feeling that disability accommodation is burdensome have created a general feeling that you should not take up disability resources unless you are disabled enough. This is very harmful, as it adds to the myth that there is a hierarchy of who is most deserving of disability labels and resources.”
“I find a lot of disability communities on social media to be intensely problematic in how they welcome or don’t welcome disabled people of certain types,” says freelance journalist John Loeppky, who has cerebral palsy and identifies as neurodivergent. “Long story short, I don’t feel comfortable in the wider community outside of physical disability.
“When the disability community decides to remove people or bash people because they’re not seen as disabled enough, then we’re just using the tool of the oppressor, and it is so often cyclical.”
While recognizing that privilege plays a role in accessing disability resources, the community cannot fall into the trap of playing the “pain Olympics.”
Disability encompasses a vast spectrum of experiences, abilities, personalities, and symptoms. By encouraging people to embrace the label and the broader community that it creates, we can dismantle the stigma associated with disability.
“Identifying as disabled also gives you a framework for understanding your so-called limitations or problems when we view disability through a medical lens,” says Roosen. “It helps to contextualize your experience in relation to other people who are also disabled.”
Progress requires the community to look inward too. For more people to feel “disabled enough,” there needs to be compassion, as well as a significant shift in how the public negatively perceives disabled people.
Being disabled does make life harder — it exposes us to prejudice, limits our ability to access society on every level, and inflicts pain. It makes sense that many of us struggle to adopt a label soaked in so much gloom.
But this little word holds so much power. It provides community, secures our rights, communicates our basic needs, and protects us in a society determined to ignore our needs.
Disability is a magnificent spectrum that I am always proud to be part of. And no matter how someone’s disability presents itself, they are “disabled enough” to feel pride in this vibrant community too.
Medically reviewed on November 02, 2023
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