Yes, I'm Disabled
I think this topic is something that people with AS struggle with. I know I do, so I wanted to write about it in case anyone else was too. Are we disabled? Am I disabled? I’ve had some internal struggles with trying to figure this out for myself.
Internalized ableism is something I deal with greatly. It’s also something I’ve found a lot of other people with AS deal with too. A lot of this internalized ableism comes from society and how it views disabled people.
Disabled people are viewed as sad, and we’re supposed to look down on them with pity. This could not be more wrong. Disabled people are just living their lives like everyone else. They don’t want pity, they want respect. They want to be noticed and treated like a human, not like a charity case.
When society looks down on an entire community, it can be hard while having an invisible illness to want to identify as such. No one wants to be viewed as sad or be given pity every moment of their life.
Society has a huge impact on how we view disability. I could go on for a while about how disability is misrepresented in mainstream media, how disabled actors and artists aren’t hired enough, etc. But that’s for another time.
When I decided I would identify as disabled
It took me until a few years into my illness to finally label myself as disabled. I also want to note, you absolutely do not have to label yourself if you don’t feel comfortable doing so. I’m writing about my personal experience and how I decide to identify.
For a long time, I would just try to get back to how I was before I got sick. I would try my hardest to do the same amount of exercise and do the same activities that I used to. Obviously, if you’ve tried this, you know that it eventually catches up to you.
I finally started learning that my body has limits and I need to learn them. I attended a presentation by a physiotherapist who told us to use that mobility aid if we needed it because choosing not to could cause more harm in the long run.
This really made me think and got me more confident with the idea of using my cane during flares. I bought a shower chair because standing to shower became too much for me.
I am a disabled person
Now, I identify as a disabled person. My disability is dynamic, meaning that my abilities change from day to day. With AS, we never know what we’re going to get when we wake up. I can go for a hike one day and be bedridden the next. We just never know.
I use a cane when I need it, I use my shower chair, and I have a disability parking pass. Once I identified as disabled, I started to be more comfortable with it, and not care what others think. I’ve started to speak up on Instagram about disability rights. I’ve found a community of people who have the same interests and want to fight for what is best for us.
Whether you identify as disabled or not, disabled people deserve to be treated with the same respect as everyone else. I’m going to fight for that to happen.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?