Ableism: Do We Really Need Another “-ism”?
I’m not crazy about the idea either, but it’s happening. It’s always been happening, and we might as well give it a name.
Living with an invisible illness
Even if you aren’t unable to work and officially declared disabled by the government, if you suffer from an invisible illness, you know what it feels like to be misunderstood and disbelieved regarding your disorder and its symptoms. A boss who rolls her eyes and suggests you take a Tylenol? Ableism. A brother in law who refuses to extinguish his overly-aromatic Pumpkin Spice candle on Thanksgiving because “it smells fine” to him? Ableism. The most odious forms occur when those in wheelchairs or with assistance animals (for example) are dismissed as though their comfort and access don’t matter, but it’s just now being recognized how much those with invisible illnesses are maligned as well.
Migraine and anxiety
The youth theatre group for which I’m on the board of directors recently had a change of leadership. The secretary, whose responsibility it is to contact the companies who own the rights of the scripts and scores we need to put on productions, works full time and found herself making the calls while driving to meetings or picking up her kids, because the companies representatives are only available during regular business hours. She needed help with that part of her job, and I seemed like an obvious choice, since I am, you know, home all day. I thought I had told the secretary and new president how bad my phone anxiety has become, but still, an email arrived the other night asking me to be the one to take on making those calls. My heart sank.
Behind the scenes
While the new president is a good friend, I wondered how he pictured my daily routine, if he thought about it at all, and if that image was a realistic one. Yes, I work from home, when I can, but most of the time I’m resting in bed, exhausted; in pain and unable to be active; making and keeping medical appointments; organizing medications; and filing paperwork. Once I pick up my daughters from school, I want to spend time with them and often, nearly every night of the week in fact, I am driving them to dance class, or riding lessons, or play practice. What I am not doing is lounging on my couch eating ice cream out of the carton, binge watching the new season of Stranger Things, and desperately wishing I had something real to do, like making phone calls to strangers.
One thing I have learned from having migraine disease, applying for disability, and dealing with unpleasant doctors is how to advocate for myself. I knew that making those calls would be so difficult as to cause serious anxiety, and I would dread each one for days, and my brain fog or pain would make it nearly impossible to communicate with the stranger on the phone. So once again, I explained that I have severe phone anxiety and not as much time as it might seem. The forthcoming reply still did not accept my hedging; he suggested that I meet with the secretary and just give it a try.
The misconception of staying home with a disability
Frustrated and concerned, I let that email sit a while. I have always hated confrontation, and saying no to people I like, especially when the request is perfectly reasonable. I talked to John about it, and my older daughter, and both told me to not give in. John sighed and said, “Ableism.” I said, really? You think? He said, “Absolutely. They think because you’re home all day, that all you have is time. They don’t understand that having a disability is a job.”
Standing my ground
In the end, I sent one more firm email in which I explained how my days go, again discussed my brain fog and phone anxiety, and finally, firmly said NO. “If migraine disease has taught me anything,” I ended the email, “it’s how to advocate for myself.”
So yes, ableism exists, and can come from the most unexpected people. My friend immediately responded that of course he understood and I didn’t have to be the one to make the calls. I felt very proud of myself. In a way, all we can do in response to those types of assumptions is to explain, educate, and always advocate.