[Quick recap for new readers: I have ankylosing spondylitis (AS), fibromyalgia, inflammatory bowel disease (IBD), Sjogren’s syndrome, and Reynaud’s disease. My primary diagnoses are the AS, IBD, and fibro, while the Sjogren’s and Reynaud’s are considered co-morbidities. Translation of “co-morbidity”: shit-that-comes-along-with-the-primary. Kind of like Amazon Prime add-on items, get them for a dollar each when you buy the other major items. All of these are autoimmune issues, so essentially my body is working hard to destroy itself in new and creative ways.]
Caveat, and feel free to apply to other individual experiences you have with disabled folks: this story, these feelings, these experiences, and these preferences for treatment and language are my own, though I will occasionally use “we” language for things I’ve found to be common when talking about them with others in my community. Please don’t assume that they are universal or necessarily portable to the experience or preference of others–always ask, unless it’s about something that’s none of your business.
Joining the ranks of the chronically ill and invisibly disabled has been a humbling experience on a number of levels. Life becomes a series of cognitive dissonances. Things we knew about ourselves we may find are not true, no longer true, or aren’t as true as we thought they were. Assumptions about what we would do and how we would do them are shattered–traveling is difficult because my body responds poorly to the insults of the airport and differences in routine, diet, and water; staying up late only happens when I’m sick because if I want to get up in the morning, I need to be under the covers by 10. Discovering my new limitations ranges from the stupid to the colossal: I forget that I can’t just quickly stand up out of a seated position, so I’ll be halfway up before I cry out and realized I’ve stiffened so badly that I need to move more slowly to give my body a chance to creak open. Or I forget my cane on an icy day and am in actual danger of falling and breaking my hip and other compromised joints.
I’m going to respond to some things folks say or think prompted by my crip tags. (As a previously able-bodied person, I see myself in a some of these thoughtless or prejudiced/able-ist comments and thoughts, so I’m claiming the privilege of saying I can know what folks are thinking).
“I hear it’s easy to get disability license plates so people who have nothing wrong with them get them all the time.” (Or: “Do you really need those crip tags?”)
Among the changes since I got sick is that I now have what I call “crip tags,” or what more polite people refer to as disability license plates. You’ve seen them–the little blue dude in the wheelchair prefacing whatever the license plate number is, the fancy blue-painted exclusive parking spaces closest to the building.
First, to get crip tags you need to have your doctor fill out paperwork. For the doctors I’ve worked with across two states, it wasn’t easy or accessible. First, you have to actually be sick, because the paperwork requires not just a doctor’s signature (I’ve heard people chuckle about how easy this must be to fake for lazy people who want closer spaces), but also the doctor’s state medical ID number, which they track and stays attached to the record of your plates. The doctor’s office can (and will) charge a paperwork fee, and in Tennessee I paid more than $85 for my doctor’s signature and medical number on a packet of forms that I myself filled out and left with them for a week. I was lucky and had the money, many–especially those on limited and fixed incomes–do not.
If the DMV finds nothing wrong with your paperwork (cross your fingers, if you can), you get plates for your car, and a placard, intended to be used if the disabled person is traveling in another’s car, or is for whatever reason using a car not their own (I’ve remembered to travel with mine only once, when I was traveling and planning to rent a car, and only because my then-husband reminded me).
Asking for the paperwork from my doctors was awful, I remember thinking that they must think I was weak and trying to get away with getting something I didn’t need. For their parts, they didn’t bat an eyebrow. For my part, I took my cane with me into the DMV on a day I didn’t need it, because I didn’t want to be judged by my ability to walk that day. I felt like like I needed to “present” as disabled in order for my request to be processed in my favor.
“Must be nice to be able to park so close.”
No, I assure you, it’s not nice. I assure you I’d much rather be bitching about the long walk from my car into Sephora while both ambulating and looking down while digging in my purse for my wallet, unafraid of what people think of me when I get out of my supersweet close crip spot, unafraid that I might fall and be permanently in a wheelchair if I damage my already-damaged joints, unafraid that I might shit myself if the walk is too far because my insides are under attack.
Or, perhaps I should say, “Yes, it is nice to park so closely to the grocery on a day where I had to leave my apartment even though it hurt too much because I needed to pick up no more than the one bag of groceries I can carry to fill my empty fridge so that tomorrow I don’t have to leave the house when I’m in this much pain.” But that kind of sarcasm might make whoever I’m talking to feel like an asshole. And wouldn’t that be a shame?
“What even is a disability? Are you really disabled?”
The correct answers to this when being asked by a stranger are “None of your business,” I suppose. But here, I’ll answer: yes, I am. It’s considered an invisible disability because you can’t always see it, but it’s always with me. I used to just say I was sick, but it’s right there in the Americans with Disabilities Act, particularly in the new 2008 amendments. [Note: The ADA site isn’t responding right now, so I’m going to link out to other resources that cover the strict basics.] The ADA defines a disability as having, having a record of, or being regarded as having “a physical or mental impairment that substantially limits one or more major life activities.” The 2008 amendments add “major bodily functions” to major life activities (including the immune system, digestive system and bowel, and they note that “An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.” So yes, even on my good days, I still qualify as disabled.
The Amendments also note that a disability limiting one activity need not limit other life activities to qualify. So yes, I am still disabled, even if I can watch Netflix and post funny memes to Facebook while I am stuck at home unable to make it three feet from the loo. (Also, people who cry that folks smiling in pictures shouldn’t be able to be on disability because they’re obviously fine should be pilloried. That’s not part of the ADA or Amendments, but it should be.) I can refer to to an actual ADA lawyer if you’d like more information (serious about this, a friend from college is one and she’s much more knowledgable than I am and would be able to answer your questions).
Now if by “Are you really disabled?” you meant “Do you meet the definition for disability?”, the answer is yes. If what you meant was “Are you disabled enough to really need disability protections and help?” then on a good joint day I would be inclined to introduce my foot to your ass. On a bad joint day, I might have to ask you to drop to the floor really quickly atop my foot for same effect.
“You don’t look like you need those plates, you walk just fine.”
I’ll never forget the story I read of a woman who was flat-out confronted this way in a parking lot, and who was browbeaten into lifting her skirt to show them her compression hose and ulcerated legs. No one should have to put themselves on display like that. If I’m using a crip spot, it’s a bad day for me. Because I now know what it feels like to hurt badly enough to need one of these spots, I try to be conscientious about using them, and do so only when I really need to. Either my joints are so awful that walking feels like being a bad human marionette after being dumped in a bag and hit by hammers, or I have inflamed bowels and honey you’d best be stepping quickly out of my way.
And it does happen. I was with a friend when I was confronted in front of a restaurant by an old man with a smirked, “Are you sick, honey?” with a head-tilt at my plates. I just said “Yes,” and kept walking, but I was sick about it all day, and distracted. I mean, did I really need the spot that day? Was I feeling poorly enough to claim that privilege, and how poorly should I feel before I take it up? Was I disabled enough, today? My later reaction was indignant and impotent anger, but I spent a good long time on guilt and self-doubt first. Who are you to question me when this has been authorized by my doctor? “Are you sick, honey?” I should have responded with, “Why, are you a doctor?” only because I can’t see myself saying “It’s none of your goddamned business” to an elder.
“Are you okay? I didn’t see you using a cane before!”
This one I get a lot from friends and colleagues, and I completely understand and am okay with this question. I mean, they see me, and it’s hard to miss me walking around with my purple paisley cane, or my pink rhinestone one. (Hell, if I have to use one, it might as well be fabulous. I used to collect fabulous high heels. Now I think it might be canes.)
I don’t always feel poorly enough to have to use my cane. In fact, since moving to the warmer and drier Southern California climate, I’m on it far less than I used to be when I lived in the steamy and thunderstormy South. Weather and climate have become really central to my comfort: rain can put me flat on my back, and damp days make me ache something awful. Drastic changes in temperature can trigger a flare, and I find that I overheat easily due to both my conditions and the medications I take. But I adore being able to walk my basset hound up and down the sidewalks of my lovely neighborhood, and that is something I couldn’t do a few years ago without paying dearly for it.
In fact, I don’t always have my cane on me–I try to keep one in the car and one in the office at all times just in case (like spare underwear), but I forget, and because I don’t need it all the time, it’s not a habit to keep it always with me. Even on bad days, I might not be limping–when absolutely everything hurts, it’s not like limping provides one side with any more relief than the other, and it actually causes more damage. I’m probably walking more slowly than normal.
I travel with a cane even when feeling well. Airports are difficult to maneuver on the best of days, and long walks and standing in lines while dragging a suitcase or carrying a bag usually make my hips and SI joint ache. I take advantage of the wheelchair service because sometimes just the length of the walk through security to the gate is something that wears me down even before I deal with the flight and get to my destination. After too many trips where I arrived in tears, I finally use the services available. [And I assume everyone seeing me in a wheelchair or on one of those carts assumes I am being lazy because I am overweight. The guilt is strong in this one.]
Was it okay to ask this? Absolutely–at least, it was okay to ask me this. I consider it genuine concern from friends, family, and colleagues, and I appreciate you noticing me. I don’t consider this any different than asking a friend if they’re sick when they look poorly, and I don’t take offense to it.
Am I okay? Depends on the day, but my usual response is, “It’s okay,” or “It’s fine.” That way no one feels like they have to stand around talking about it and feeling sorry for me. The best responses I’ve had from friends and colleagues to that was “No, it’s not, that sucks, and I’m sorry.” I really appreciate that they acknowledge the suckiness of the situation, and then move on from it to a topic we can do something about.
“Are you afraid?”
I’m afraid of a lot of things. The IRS. Poison ivy. My mother seeing the state of disarray on my kitchen table. But yes, in relation to being sick, I’m very afraid. Chronic illness community forums abound with horror stories of people who are denied disability despite obviously being disabled. (Recently, a friend diagnosed with end-stage terminal cancer was denied disability. The mind boggles.) I am afraid of what will happen if I get so sick I cannot work, for a few reasons. The doctors and medications that keep me functional are in no way possible without health insurance. My work is something I love, that gives me purpose. How can I pay my bills if I can’t work? Even disability is just a fraction of working income, if you can get approved at all. I am afraid of the politics of this country, and how the disabled and chronically ill are perceived as leeches on the system, as burdens, as better off dead and not parasites on the taxes of the able-bodied.
I am afraid of what happens if I am in so much pain that my mental function is compromised. I am afraid of the coming pain–the AS is degenerative, and while I sometimes now have days that take my breath away, I know that worse is waiting, in five or ten or fifteen years but there. I am afraid of how I will get around if I cannot walk. I am afraid of being a burden on those I love. I am afraid of not having control over my bodily functions. I am afraid of being abused if put into a home. I am afraid of never coming out if I am put into a hospital. I know technically we’re all dying, but this feels like dying faster than I had planned, and I am afraid of death.
I say now that there are certain things that could happen that would make me not want to live, but when I get there, who knows. Life is pretty awesome and I’d like to stick around and see how all of our stories go.
“Will rubbing kale on it help?” Probably not, though if I replaced the chocolate in my diet with kale I’m sure other things might improve. On the other hand, nowadays I’ll try anything twice.
Now, my friends and e-friends, I welcome your questions and am happy to answer as many as I can from my perspective (like I said above, your other friends with disabilities may well have different answers, and might not want to talk about it at all). I’m still learning a lot, both in terms of my own illness and ability changes, but also in changes I need to make to my own language that has certainly been ableist. The AS is degenerative, so I’m still learning new things about my decline in ability and how to maneuver in life.