Why Do I Call Myself Disabled?
There are many terms that can be used when referring to ankylosing spondylitis (AS): chronic illness, invisible illness, autoimmune disease, condition, and disability — I use all of these. However, not every person with AS identifies with the term “disabled.” At the end of the day, it’s up to each individual to decide which identities to claim, but I think it’s important for people to know why I refer to myself as disabled and to expand their understanding of the word.
What is disability?
“Disability” is defined as a “physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions.”
This means that the scope of disability is wide, encompassing everything from anxiety disorders to learning disabilities to temporary physical injuries to permanent genetic disorders. However, the stereotypical image of a disabled person tends to be someone who uses a wheelchair or has another visible indicator of disability. Invisible illnesses like AS have no visible indicators and therefore, I think many people do not categorize them as “true” disabilities. The same goes for mental and cognitive disabilities that are often invisible.
Disabilities can be invisible
But it shouldn’t be a question of looking “disabled enough” to call yourself disabled. Using a wheelchair may be a reality for me as my disease progresses — why would I only be considered disabled then, even though I have the same condition now? It’s time to expand your understanding of what disabled looks like and remind yourself that every day, you likely interact with dozens of people who have disabilities without even knowing it.
"Disabled" isn't a bad word
Another important note is that “disabled” isn’t a negative term. When I refer to myself as disabled, I’m not looking to receive pity — I’m just stating that I have a condition that limits my daily activities and interactions. That’s a fact I have accepted, and I’d like other people to accept it too. “Disabled” isn’t a bad word — treating it as such only increases the stigma around disabilities.
As I mentioned before, not every person who has AS (or another invisible disability) identifies as disabled. It could be because they tend to think of only visible disabilities when they hear the word. Or, it could be because they just don’t want to identify as disabled — which is totally fine. Identifying as disabled can lead to stigma and other negative experiences, so I understand why some people avoid it, but I wish they didn’t have to.
It describes my experience
For me, the word “disabled” is an important descriptor of my identity and my AS journey. I use “disabled” for a few different reasons. First, it validates the barriers that I face because of AS. “Illness” just doesn’t describe AS accurately enough, because it can also describe the common cold. The word “disabled,” however, specifically refers to the fact that AS limits my ability. “Disabled” shifts the focus onto the consequence of this disease, which is a loss of ability to participate fully in society.
Another reason I use the term “disabled” is because it has helped me accept my AS. I could choose to be vague about my diagnosis and tiptoe around the term “disability” because “chronic illness” is more socially acceptable. But in order to accept the disease that has become a huge part of who I am, I have to call it what it really is. I have a disability and I am disabled. At first, it was really hard to say that — and it still feels scary writing it now — but the more I say it, the more comfortable I’ll feel, and hopefully the rest of the world will too. Like I said before, “disabled” isn’t a bad word. We should embrace it and embrace disabled people along with it.
It connects me to community
Finally, I use the term “disabled” because it makes me feel connected to the disabled community, where I find support, understanding, and camaraderie. Living with AS is often very lonely. Able-bodied people cannot fully understand the unique struggles of living with a disability. By claiming a disabled identity, I have joined an entire community that stands behind me. I have (virtually) gotten to know tons of other disabled people from all over the world, not only with AS but with other kinds of disabilities. I have been welcomed into this community where I see so many others who proudly call themselves disabled. It helps me to no longer be scared of this part of my identity, but proud, too.
So, next time you hear me call myself disabled, I hope you understand how it applies to my condition and my identity — regardless of my able-bodied appearance or the fact that AS doesn’t fit the stereotypical image of a disability. Yes, I also use other terms like chronic illness or autoimmune disease, depending on the context, but I won’t back away from the word “disabled” because of its stereotypes or stigma — I’m going to embrace it like I would any other part of who I am.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?