Tuesday, May 01, 2007

Blogging Against Disabilism Day

“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.


Ruth said...

You raise some excellent points. The social exclusion, inability to get around due to access - and other peoples' reactions can really hurt more than the illness or disability. Advocating for positive change, education and perception is one thing we can do - and work with our allies and each other toward having our voices heard so others can understand better - rather than excuse "ignorance" to maintain the status quo. Change is not convenient is it?

The Goldfish said...

Well done, this was great, thank you!

I filed it under "Impairment Specific" because I think a lot of what you describe is about about attitudes towards chronic illness, if not CFIDS specifically.

The truly awful but kind of interesting thing about CFIDS is that it gets all the rubbish associated with chronic physical illness and living with physical limitations, plus the difficulty of living with cognitive dysfunction which folks struggle to understand and accomodate plus much of the stigma that people with mental health conditions experience, all this "snap yourself out of it" nonsense.

Doesn't make anyone feel much better, but I do think you get a particularly insightful perspective on disablism. And this was a great post.

David said...

Great post and great insights. Thank you.

jennifergg said...

What a terrific post, filled with so many valuable insights. One thing that I related to especially was the fact that we are all often put into the position of being an advocate, whether we want to or not, whether we're feeling up to it or not. We must explain, or suffer the consequences. We must educate, or live with ignorance. We must be active for change, or live with unacceptable situations. In this way, our own feelings and needs become secondary. It's an aspect of mothering my son with Down syndrome that completely caught me by surprise, one that I'm still trying to figure out.

marmiteboy said...

It the attitudes of others that are half the battle (the other half being the total lack of adapted environments).

I wish that people would stop concerning themselves with our lives and how we live them and get on with their own. It suppose it makes them feel in a position of power if they can demean our existance with such trite comments. Really good post I hope the right people read it.

Sally said...

I endorse all said above, great post - from a Mum of a MS/CFS from 11-28 yrs and counting.

seahorse said...

I really get where you're coming from, and have bookmarked you along with my other favourite posts from today. I need to re-read quite a few to really appreciate the essence of what's coming across, but what a fantastic day.

Sharon McDaid said...

Great post. It's so wrong that people just take it upon themselves to make decisions for you (like that woman in the mall) because you were using a wheelchair.

It seems there are so many similarities to the attidudes faced by people of all different disabilities. While you have people tell you to 'just start moving' (how insensitive and hurtful!) parents like myself of autistic children are told that our children just need firmer discipline or a better diet etc.

Philip. said...

'I have been denied proper medical care and my dignity'

Dignity, or lack of, that to me is one of the most important negatives to being disabled. It should be a human right!

Loved the post.


Laurie said...

Great post--reflects so well the idea that living with physical conditions is hard enough; having to explain/justify/validate our altered existence is an extra burden we shouldn't have to carry...

Sneakers said...

My daughter has an genetic anomaly that puts her in a wheelchair part of the time. It's not because she's lazy, it's because her joints don't work properly.

It's tough to see how people look at her differently from day to day, depending on whether she's walking or rolling. She isn't a different person in her wheelchair, just differently mobile.

Attitudes do change, although slowly. I have Environmental & Chemical Hypersensitivity, and I do find that there is more awareness now than there was 20 years ago of how perfumes and cleaning solutions can debilitate a sensitive person.

Here's to more awareness and change!


Crazed Nitwit said...

I cannot completely empathize with you but as someone who's lived with clinical depression for 12 years, I can understand how irritating it is when people say C'mon now, just pull up those bootstraps and get on with life. I'd like to tell them to shove it but I usually change the subject or leave. Yes, family can be quite painful especially in-laws who have no concept that depression is NOT a choice.
Love you no matter what!!

Anonymous said...

"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."

I don't think people should have to refrain from getting a pet because they have a friend who is allergic to them. In general, I'm fine with accessibility, but that's like telling someone they aren't allowed to have children. My cats and rats (rats are affectionate, nice pets and are no more likely to spread diseases than any other pet) are members of my family, as were my dog, my cats and my rats that are now buried on our property. I have found that I can't be happy in a home without at least some kind of pet to greet me. Animal-less homes seem barren to me. My mom and I are both allergic to some of our pets (her to cats, me to rats) but we haven't gotten rid of them and won't unless the allergies become life-threatening (and even then it would be a difficult choice). Certainly, we'd never do that for a friend, who will only be *visiting*, not living in that house. If they're a good enough friend, they will be willing to accept visiting at their house or somewhere else, rather than insist on telling someone else whether or not they can have a pet!
Apart from that, I like your entry. I just hate how people act like pets are a 'personal possession' of no real importance to their human companion. (Although I'd even be uncomfortable with someone who doesn't live with me telling me I couldn't have a certain kind of plant in my house because they're allergic to it).

Never That Easy said...

Janice NW - Your friendship and support means more to me than I can say. PS - bootstraps are highly overrated.

Sneakypony - Definitely - I have seen so many changes in just the last few years, particularly about Chemical Hypersensitivity. It would be wonderful if the awareness started to a read shift in people's attitudes. Hopefully that will be coming soon. I love, love, love your quote: "She isn't a different person in her wheelchair, just differently mobile." Exactly true. Thanks for visiting!

Laurie & Ruth - Thank you: I'm glad that came across. I did really want to show how much peoples' attitudes add an unnecessary burden to someone who is ill.

Philip - Thanks. Dignity is just another thing that the temporarily able bodied (a term I picked up from BADD, thank you very much!) take for granted, but is so often denied to those of us who are disabled. There were a few posts that talked about how there may be a giant shift in public attitudes as more and more people (from the baby boom) get older and have more health related issues. Hopefully, this will apply to the idea that everyone has the right to be treated with dignity and respect, as well.

Sharon, Marmiteboy, & David - Our celebrity-obsessed, short-attention-span society is all about making snap judgements about other people. And, of course, many people then think that they should share those judgements with you, when they really ought to just keep their mouths shut. I have a hat (you can get it from Cafepress)that says "My disabiling chronic condition is more real than your imaginary medical expertise." I haven't yet been brave enough to wear it in public, but I do wear it especially for that insensitive cousin, when he comes.

Seahorse - I totally agree: BADD has been amazing, but also overwhelming. I still have quite a few posts stuck in my favorites folder, so I can go over them again, and really appreciate them.

Sally's Life & Jennifergg- Thanks so much: My mum has been my absolute best supporter, advocate, and friend during this whole thing, and I know how difficult it has been for her, so I just want to add an extra thanks for all that you do. Mothers of individuals with disabilities have their own unique set of challenges, and I was so glad to see so many of them represented in the BADD blogroll.

Goldfish - Thank you! You did such a wonderful job hosting, and I appreciate it so much.

Ettina... Thanks for posting. I think maybe I wasn't as clear as I could have been: I am not saying that I should have a deciding vote in whether or not a person gets a pet (just because I am allergic). I am saying that, when the people I love choose to get pets, they are choosing something that excludes me from aspects of their lives. When my sister chooses to get a cat, she is effectively saying to me that I am unwelcome: she is making it impossible for me to share in anything that may occur there: birthday parties, dinners, game nights, just sitting and talking -whatever.

"If they're a good enough friend, they will be willing to accept visiting at their house or somewhere else, rather than insist on telling someone else whether or not they can have a pet!"

True: but I am talking more about the times that alternative arrangements aren't possible. Think of how often you just 'stop in' to see somebody. All I'm saying is that choosing to own a pet is choosing not to include me in all the events that would happen in your house. I think that's pretty significant, particularly when they are members of my family or close friends.