“You know, it’s so funny. What keeps any of those people in that dining room from being like me is just a virus, a thing in my body over which I had no control. Why did I get it and not them? Fate. Circumstance. Luck. But I have a place on the earth, just as they do. I have rights.” Elizabeth Berg: We Are All Welcome Here
Today is Blogging Against Disabilism Day, and it’s a topic near and dear to my heart. When you finish here, please go over to Diary of a Goldfish and check out some of the other, bound-to-be wonderful posts.
Disabilism (or ableism, depending on your preference) refers to discrimination on the basis of ability/disability. Like any form of discrimination, there are a million different ways that this prejudice can be expressed. I’m going to try to focus on just a few of them.
First, there are the more overt examples of disabilism that I have been subjected to: The kind of things that most people would recognize as a form of exclusion based on my illnesses &/or inabilities.
What sorts of things have I been denied, recently, on the basis of my disability alone?
I have been denied proper medical care and my dignity: Let me just say that having a ramp does not make your office accessible. Having a ramp is nice, but if the doorway it leads up to is too narrow for a wheelchair to fit through, it means squat. If, once I manage to crawl through your doorway while someone else pushes my folded-up chair, I still can't get into an actual exam room? Then your office is not accessible. If I have to sit next to the trash while you "clear out a little space" in the HALLWAY for us to conduct our exam, your office is not accessible. If you have to skip over the "not so important" parts of the exam because someone is trying to get by and you want to "move things along," then your office is not accessible.
I’ve been denied my home & my health (by The PUS and by the city), a total of 4 times in the past 9 months.
I have been denied the ability to make my own choices & to be regarded as whole/grown-up person – “I am in the mall. I am waiting to the side of an aisle for my sister to catch up with me. A woman that I don’t know is suddenly at my side – “Can I help you get in there, sweetie?” Grit teeth re: sweetie. “No, thanks, I’m just waiting.” “Oh, it’s no bother. I’ll just move this, right here. I don’t know why they can’t make these places so that everybody can fit.” Yes, I agree. But… “No, thank you. I’m really just waiting for…” “Now see – that was quick, wasn’t it? Now I’ll just… there!” Did you really just lift the back of my chair up like a shopping carriage? And almost dump me on the floor? I know you didn’t: “Ok, you need to stop that, please. Because…” “Oh, I just know it: the angles in these places! But they don’t think about that. There, you’re all set!” No, I was all set before you came along and decided for me that I should be up over this bump, sandwiched in between some clothes. But thanks, really, you were such a big help. Now I know you aren’t standing there waiting for me to say thank you, are you? Sigh, I am such a wimp: “Well, I can’t tell you how much I appreciated that –“because I didn’t at all – “but really, I..” “Not a problem, sweetie.” And off she bustles, honestly thinking she’s done her good deed for the day. While I am now stuck between the clothes, over the bump.”
And, sure, some of these examples might have gone differently if I could have been more assertive (trust me, these are lessons I have definitely taken to heart), but the fact is that I was just going about my day, and my experience was directly impacted because of my disability - and other people's disabilist attitudes.
But, more often than not, for someone with illnesses like mine – chronic, incapacitating, but in many ways invisible – many of these acts of degradation & discrimination are more subtle.
“I've been lonely, I've been cheated, and I've been misunderstood, I've been washed up, I've been put down, and I've been told I'm no good” A Change In My Life
We talked before about my soon-to-be Sister-in-law and her "Suck It Up" comment: but this is just one example of the more subtle, more emotional, but no less damaging types of disabilism a person with a disability can be subjected to. I have had people – close to me and close enough – tell me that I am lazy, weak, faking or depressed. I have been told more than once to ‘just start moving’ or to ‘keep moving till I feel better.’
On my worst days, I feel the guilt of being unable to do so, the fear that I am not really trying, the shame that I just keep failing.
“You know this is what our culture tells us, so much: It’s really a question of mind over matter. You can overcome any sort of weakness through force of will. If you can find whatever the emotion block is, that’s all it takes. It can be very hard to overcome that whole notion.” Paula Kamen, Head Case, on Salon.com
“I’ve never gotten better, no matter how hard I’ve tried. I’ve been ill 7 years. I used to have only 4 symptoms: Now I’m up to 25. I’ve run out of fuel. A million times I’ve tried to resurrect, to no avail.” Mayra Lazara – Prisoner of CFIDS; Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome
Having chronic, invisible & controversial diagnoses also makes you aware that there’s a hierarchy of ‘acceptable’ illnesses. Having to divulge the source of my disability is sometimes frightening: I’m afraid to see the doubt in their eyes if I mention CFIDS, afraid of what they think of me now that I’ve told them, afraid of having to – yet again – defend myself & my choices about an illness that I have no control over. I’ve often thought it would be easier to say “Cancer,” because you know what response you’re going to get then: No one’s going to look at you like you’re crazy; no one’s going to say you should exercise your way out of it.
If it’s someone I’m just meeting, I probably don’t explain, specifically. I usually don’t, at first meetings, launch into my list of diagnoses - People tend to find it off-putting, and (much shier in person) it’s just not in my nature. If someone I don’t really know asks me what’s wrong with me – and they often do - I tend to stick to the vague – “immune system issues, blood-pressure issues, a form of arthritis.” These are all true, but they don’t feel true. It makes me feel guilty that I sometimes just don’t have the strength to say “It’s CFIDS/FM/POTS” and deal with whatever reaction comes up. It feels as if I’m denying a vital part of who I am and betraying all the other people who are suffering from these horrible diseases and can’t speak up.
Some of the more negative responses I’ve dealt with have been from people who didn’t really know me. A student in an abnormal psych class in college, who brought up CFIDS when we were discussing psychosomatic illnesses. A cousin who calls me Stumbles and says things like “If you stayed with me, I’d have you outta that chair in a couple of days.” Although he means these things in jest, I don’t always take it that way. (And have responded to the question “So when are you going to start walking again, and stop laying around all day?” with “Well, about the same time you re-grow your hair and start to grow yourself another testicle, as the amount of control you have over that is equal to the amount of control I have over my condition.”)
My siblings have probably been the ones most affected by, and most conflicted by, my illnesses. They're also the most likely to hurt me with their discrimination. For a long time, one of my younger sisters – only 8 at the time I fell ill, - felt I was faking the whole thing. To her, illness was something you caught and got over: Why didn’t I get over it already? And for quite a while after that, she continued to think that I was using it to my advantage – using it to manipulate things into going my way: we shared a room, and she couldn’t listen to her radio at night or when I was resting, she never had the room to herself, as I was mostly confined to bed, everything seemed to work to my advantage. (The fact that I was too sick to enjoy whatever advantage I may have had never seemed to occur to her). She was very vocal in her dislike of me and my illness, and there continues to be times when she is completely uninterested/unsympathetic about my situation.
Being ‘the sick one’ sets me apart in my family & with my friends, in a lot of ways, and there are many, everyday discriminations I face: Parties (or lunches or movies, shopping trips, conversations) that you don’t get invited to any more (never mind the fact that you most likely couldn’t go anyways). Ones you are invited to that include ‘just a few steps’ or women bathed in perfume. Deciding to get a cat or a dog, even knowing it means I can never visit your house. All these items illustrate a pattern of exclusion, even by those closest to me. Often, the impulses behind the exclusions are good – not wanting me to be disappointed that I’m missing out on something, for example – but they still serve to set me apart from the ‘normal’ people, and further my sense of isolation. *Just a note here – my family and closest friends also go out of their way to include me in things & make special arrangements for me when necessary. For today, though I’m only discussing the times (thankfully less and less frequent) that doesn’t happen.*
“Damn it all, I wish he (her husband) would read and understand. I am so tired of pleading for consideration. It is humiliating to have to beg all the time. To exist at the convenience of others. And I am expected to just put up with this quietly.” Phyllis Griffiths – Valley of Shadows: Journal Entries; Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome
I thought about continuing on, talking some more about how so much of the experience of illness is shaped by people’s preconceptions about what illness really or means, and how so few people have any understanding of my illnesses at all, but I want to make sure you all go read some other posts. I’ll just finish by saying this:
Living with a chronic illness (or any disability) is hard. It’s an everyday, everyway kind of struggle. And prejudice and discrimination and mistreatment only serve to make a difficult situation worse. There’s no need for it. There’s no excuse for it. If you don’t know enough about something that someone is dealing with, ask questions. Read about it and learn. Don’t assume that they can or can’t do something. Don’t assume that they’re unhappy just because their sick. Don’t assume that one sick person is like another. Don’t assume that you’re helping them when you’re really not. Just don’t assume. The only thing you can assume is that a person with a disability still wants to be treated like a person.
And it would really help us out if you could do that.