The Pride and Prejudice of Living with Disability
/By Mia Maysack
July was Disability Pride Month, and as much as people with disabilities deserve recognition, I could not help but have mixed feelings about it.
Disability awareness should not be a one-time event, something that is condensed to a single month, week or day on a calendar. I find that borderline hypocritical. We don't need support when it's convenient, fits neatly into a schedule, checks off some sort of box, or simply looks good.
What we're truly in need of is life-giving care, resources, accessibility and validation --- every single day. I believe the difficulty in achieving those goals comes down to adequate funding and the attitude of the general public, who more often than not separate themselves from the most vulnerable among us.
The overall health and well-being of a society is a collective responsibility that we all have a role to play in. Until we actively participate, we'll remain dependent on systems that are rigged against us, often due to distractive barriers such as class, sex, race and ableism.
Many of us who live with a disability understand that all it takes is a slight shift in circumstance to completely alter or change your life. Each of us are only an accident or diagnosis away from a completely different and more challenging existence.
Why is it we must wait for those challenges to happen to us personally, or to someone we know and care about, before we genuinely begin to give a damn?
On the one hand, I am proud as hell to be a part of this disabled demographic. We not only continue to choose life, but we do so under scrutiny and circumstances that countless others don't have to worry about or take into consideration.
We not only cope, but face obstacles that more able-bodied individuals don’t even think of, such as the lack of wheelchair ramps, mobility obstacles, lack of transportation, or even the successful completion of the most mundane and basic chores of living.
On the other hand, what is it that I am supposed to be “proud” of exactly? That it took me three attempts to complete one bathing session? That I was exhausted afterwards to the point of needing to spend the rest of the day recuperating? Am I to be prideful that I exist in a country that persistently claims not to discriminate, but blatantly does so?
Is it pride-worthy that I’m essentially punished for being unwell, while also being expected to someday improve -- without being granted adequate or proper accommodations to do so?
Are we to figuratively jump-for-joy over the fact that we have to beg, plead and consistently “prove” the legitimacy of our disability, while simultaneously being condemned, doubted, judged and looked down on as burdens on society?
Should I celebrate the fact that if I find work, fall in love or get married -- or God forbid make a dollar over my government allowance -- that I run the risk of my disability benefits being terminated?
If we don’t work at all, we are lazy bums. And if we get a job, then we were faking it!
These are egregious injustices that keep us dependent. We’re treated as if we should be thanking our lucky stars for the ability to merely exist, with little awareness of the demands that it requires or the extensive toll that it takes.
Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.
