Recently I was having a discussion with one of my friends about disability visibility, and the privilege of able-bodied people that does not get spoken about very frequently at all. This particular friend has SMA: Spinal Muscular Atrophy. We were talking about the different reactions we have, her having a visible disability considering she is a wheelchair user, and me, who has invisible disabilities. Something she said during this conversation hit me:
“With visible disabilities, it’s all about proving what you are capable of doing. With invisible disabilities, it’s all about proving what your limitations are.”
Now, this is not to say people with invisible disabilities are in this constant mode to prove the extent of their disabilities. But the thing is, we have the luxury of appearing able-bodied, allowing us to acquire jobs and other resources that others may not, but this often leads to a sticky situation where somebody expects me to be able to do something that I cannot. This leads to job anxiety, feeling as though people think I’m taking the easy way out and blaming things on my “disability,” and ultimately it results in me being unemployed due to no reason but my anxious mind, worried that my boss will soon realize the full extent of my limitations and that I cannot adequately do the job. My friend with SMA, however, disclosed that she has applied to 50 jobs very recently, with nothing to have come out of it.
It hurts to know that it is in fact, a lose-lose situation, with nobody on the disability “spectrum” feeling adequate. You are either too disabled, or you are not disabled enough and have to prove that your limitations are valid.
Around the same time of this conversation, I had an arthritis flare up. Taking the strongest pain medicine at my disposal, I still tossed and turned, unable to sleep as nearly every joint in my body kept me awake, throbbing. And as I laid there, I thought to myself, “Damn, I could really use some Percocet.”
But this would never happen. It would never happen because in the medical world, people value functionality and productivity over comfort. I am not in comfort. I can’t remember the last time I felt no pain. Yet, I can move. I am able to walk. That, in the minds of doctors, is good enough. Despite me growing up with chronic pain, being on many different pain medications at various times and therefore knowing what works best for me, there is no way on this green Earth that I could walk into a doctor’s office, tell them my pain level, and have them give me the medications I need to be comfortable.
Is it fear of addiction? Fear of themselves being judged for prescribing a controlled substance?
I don’t know.
All I can say is God Bless Western Medicine.