Disability is not a thing that is picked up and put down while in the presence of someone. An abled bodied person walks in the room and the disabled don’t say, “Let’s suit up and be disabled now that someone is watching!”
No, disability by definition and nature is a constant thing. It is something that you live with and struggle with. My husband has often commented that being disabled: navigating insurance, government assistance, doctor’s appointments, and prescriptions; is a full time job. He isn’t wrong. See my article on that aspect of disability.
Invisible disability is also unique because of the systematic problems that it creates. I have a diabetic friend who has battled for sometime with a sore on his foot. It necessitates IV antibiotics which requires a pic line which requires regular breaks at work and home to take the IV antibiotics. His diabetes is well managed. This is just a side quest on the larger quest of dealing with diabetes. His simple limp doesn’t really expose the breadth and depth of his challenges. Because we live in an ableist society, keeping his job relies on looking abled bodied.
When you struggle with an autoimmune disorder the problem grows exponentially. Autoimmune disorders causes the whole body to work in unexpected and wacky ways. Yes, wacky. Your body doesn’t feel like it belongs to you. Your body is completely out of your control.
My sister has an autoimmune disorder. She is undiagnosed because of poor health care and limited funds. She hasn’t been able to drive for months because her right foot has just chosen to go numb. From her hip to her foot, she has excruciating pain and then her foot itself is numb more often than not. This has amped up her stress which in response has amped up the pain in her hip, leg, and foot causing the cycle to continue on viciously.
Those of us with autoimmune disabilities understand on a deep level the ways in which our bodies systems are connected and stress’s effect on the body.
This also leads to our inability to work regularly. My sister has been working remotely for some time by doctor’s orders because she cannot drive. I go through times of great out put in my life and those are followed by times of equally great inability to put out any type of work whatsoever. She is constantly compared by her abled bodied boss to people who are abled bodied and quickly recover from injury. It doesn’t cross her boss’s mind that her condition is chronic and severe all the time.
I struggle deeply with consistency in my life. What I am able to do one day I will be completely unable to do the next day. Goddess forbid you put a common cold or other infection in the mix, then everything is shot to hell and gone.
This is why it is hard to “spot a disabled person.” When the physical disability is easy to see (missing arms and legs, confined to a wheel chair) then it is easy for the abled bodied to sympathize. When you deal with a chronically disabled person you often see them at their best, because they hide away at their worse. There is so much inherent shame that an ableist society creates around being sick in the first place. Those of us who are chronically ill learn to hide, mask, and pretend that we are all good. Even my ability to put this article in most abled bodied human’s mind means that I am clearly abled bodied.
What you don’t see is the real struggle to get out of bed because sleep wasn’t good. Struggle with eating healthily versus eating what ever you want. Exercising versus not being able to in mind or body. Taking tons of herbs and vitamins in an attempt to undo the damage being done to your body on a second by second basis. We smile over pain knowing we have a threshold for pain most can’t conceive.
One of partner’s was in the hospital recently and they kept asking how her pain was. I sympathized with her exasperation. Pain is a every day thing, asking if the specefic pain at the current site of acute illness is better is one thing, but asking if the pain in general is gone is just silly. She would say, “It is much better,”
“Great!” the doctor would say, “So it is gone.”
“No,” my partner would hedge, “It is much better.”
“Well, what’s your pain number?” the doctor would respond.
My partner knowing that continued hospitalization was on the line would hedge, “It is, ya know, like a five or so.”
The doctor’s never knew what to do with that. I finally stepped in and said, “This pain, the urgent pain is much better and getting better, is what she means.” Grateful, she would smile and nod.
Most doctors are abled bodied and for them, you are in pain or you are not in pain. There is no place where you just live with your pain. And yet, their patients do it every day, simply live with the pain and discomfort. Go on about their lives despite the struggle.
I expect a certain amount of pain in my life. Acute pain is alarming as it is for everyone. It doesn’t, however, mean the same thing for the chronically disabled as it does for the abled bodied. We can have grave pain and address it and move on. I have learned tricks to do just this. (a tens unit on hand at all times, for example, or preemptive pain medication). I see a chiropractor because I have that privilege I also arrange my life so that I can rest before times of great physical exertion. I have that privilege, also. Parking in the handicap spot.
Life is about finding a way to navigate and over come whatever your difficulties are. The more privileges you have the easier it is to navigate those challenges. I have a ton of privileges. I financially married well. We have insurance. I don’t *have* to work to make ends meet. Because I have superior health care I am better able to manage my disorders. I have the added benefit of a service dog. I can afford helpful and sometimes necessary vitamins and herbs. I have time to fight for my needs and find alternative solutions to uncovered medications.
Yet the thing I can’t over come is the inherent disregard of the abled bodied society. I am seen as a high functioning invisible disability person. You can’t look at me and tell I am sick. To this end I have been compared to persons born without arms and legs as if that is somehow the gold standard in disability – only disabilities you see count, my invisible disability isn’t as real or as impactful as living without arms and legs. Yet it is and is not. I have so many privileges others do not have to battle my chronic illness. I sometimes am struck dumb by what others with similar issues must do in spite of how they feel or what their bodies are capable of.
Recently, my therapist asked what I did for my chronic illness in times of necessity and high stress.
“Ignore it,” I responded without hesitation.
And that is what most with chronic and invisible disability do every day to survive.
I wish for a world where the world no longer ignores the ableist privilege that is pervasive and at times more damaging than the already daunting world those with disability face.
Pagans With Disabilities & Chronic Illnesses 