Friday, February 15, 2008

Disability Rights: Why it is YOUR problem

Hey Feminists, Christians, Activists, LGBTQ, the political left, the centre and the right, and any other group you want to throw in this powerhouse of US and Canada they call North America (Mexico must LOVE that) listen carefully: We, the sick, the people with disabilities, those with impairments, the ill are not going away or going to remain invisible for a simple reason. WE are YOU. If you don’t have time to put us on your agenda then you don’t have time to care about yourself, your partner, your children, your parents or your friends. And sadly, it seems you don’t.

Everyone is upset this week because in Tampa Florida a deputy dumped Brain out of his wheelchair to “check if he was disabled.” Only it was caught on video and now it has made the news cycle: oh no, throwing someone out of a wheelchair…how cruel. Video here.

Is it cruel. Yes. But it also makes good TV. Here is just a selection of other actions against people with disabilities this week which didn’t make the national/international news cycle, and I didn’t even use a news sifter or server, just various disability blogs:

Do you find it interesting that someone tipped out of their chair by the police is "indefensible" while in The London Times, the columnist Rod Little stated:
"Next time you see a young person in a wheelchair, tip it over and drag the occupant to the nearest job centre, lecturing him or her all the while on the dignity of labour."

Or while Brenda Orr burned to death in her own bed AFTER calling 911 and given them her address and being put on hold. The 911 worker did not dispatch services for over two minutes (this was the second time Brenda had called) - the worker put that caller "won't get out of the house" when Brenda was a severely disabled individual with MS whose BED was on fire and though she repeatedly called 911 (it seems it was about 5 minutes from when she first called until 911 sent for assistance) could not get a quick reponse and died, 'Orr's body was found at the side of the bed in a kneeling position by firefighters.'

In Cleveland last week, three 12 year old students, two boys and a girl beat a student because.....he had cerebral palsy. The attack was so severe the boy had to have a testicle removed. The boy had been bullied repeated before solely based on his neurological condition.

The school Superintendent Myrna Corley's response: “It's an unfortunate situation.”


On Tuesday, though I have no fine motor control of my hand and limited gross motor skill I was trying to make a complaint about discrimination on disability AT a disability vocational center when the manager would only accept the complaint if I did it MYSELF, in WRITING. This was a painful and very slow process, of over 20 minutes for three minutes of writing. Later the manager apologized saying, she had made me do that because, "I had made her angry." The full story is here.

Gosh, I guess I should hope she doesn't get angry often.

Today I was terrorized by a care worker who I asked to be removed because a) she didn’t respect my space or belongings (picking things up, using my time and kitchen to make her lunch instead of mine, going through my stuff looking for things that interested her) and b) because she was not self directing and crossed personal boundaries. I and Linda had talked and talked to the agency twice earlier in the week to have her cancelled from coming today at 1 p.m.

Today, a woman showed up at my apartment, not identifying herself on the buzzer, only giving the name of the care giving agency. She showed up before 10:00 a.m. and after walking into my apartment did what no worker has ever done in the eight months of homecare: she locked the door behind her. It was the woman who had been cancelled. She was angry. I was terrified. I kept telling myself, “You take boxing, she probably thinks you are a lot weaker than you are.” She wouldn’t explain why she was there, I insisted she call the care agency and when she went to the other room where I heard her going through the objects, picking up my hand blown glass earrings, a gift from Linda before eventually making the call. She was in the wrong building. She never explained why she showed up, she just kept glaring at me and I kept saying, “No care for me today, okay.”

How to explain the terror of seeing the person you cancelled over a day ago showing up hours early, locking the door behind her and being angry, knowing that if she wanted she could drag me off the chair and leave me on the floor to choke. How many of you are REQUIRED to leave your door open so over a dozen people can come and go because it is acknowledged that you are too weak or in need of care to reliably open the door…..or coincidentally defend yourself.

Maybe this seems a bit all over the place. So let me try and bring it together for you. Yeah, I’m nominated for a Canadian Feminist blog award, and much like the other Canada blog awards (which had a category for craft blogging) there is nothing for disability. The person nominating me, as much as I appreciated it, make mention of none of the blogs I have done about what will be a significant experience for at least 1 in 7 women out there: having or having a loved one processed and labeled with a chronic condition or impairment. They did however mention the posts I did BEFORE I got sick. And yes, I used to blog on women and sports. But you know what, I STILL blog on women and sports. What do you think my post on 10 easy steps to Badminton for PWD’s was? Or my post on why I, as a woman in a wheelchair, love to box is?

I am not oppressed by the patriarchy; it was not a man who denied me a shower in a town where a poodle can get a shower and shampoo in a couple hours with a single call. It was H., the RN Supervisor and A.M. the Case Manager, women. The people at Triumph who systematically abuse people with disabilities with their negative reinforcement “Behavioral Training” from the person on the phone all the way up to the Site Manager are all woman, as was the case manager who watched me labor painfully because I made her angry. And I am pretty sure that a majority of them, if not all would call themselves Feminists, would say, that they, in their job are upholding their Religions’ ethics, they are HELPING people. That whatever their political side, they think they are doing a good job. Do you think that 911 caller or the female Superintendant of Schools think, “Golly, I hate Crips, and today I am going to stick it to one?” No, they do their job knowing that at the end of the day they make the world a better place.

Yesterday, Linda said, “Do you think it is wise to have so much gay and lesbian manga/books around with all the (straight) home care workers coming?” There have been a few incidents. I need help showering, and yes, I’m pretty openly lesbian, except, when a caregiver gets quiet or puts down a lesbian book she picked up like it is a snake, how comfortable are you going to be when she showers you; when she puts on your bra, when she changes you and lays you in bed? Do other people receiving care worry about these things, are caregivers even trained on these issues? I just want to know why, after years and years of having gay and lesbian manga on my shelves and in the bathroom, NOW, this week, Linda thinks it might be “too open?”

Domino from Vancouver writes on Ouch! at the BBC about a queer event which is not accessible and when she complains to the vendor and organizer is told that isn’t likely to change. The response on the BBC from one reader was, responding that hey, if you want LGBTQ spaces to be accessible you wouldn’t last a day in London. I can attest from personal experience that Victoria, BC and Cardiff, UK doesn’t have accessible Queer spaces, at least the majority of times. Ironically, the Gay/Lesbian organization my partner was on the board of, I would not be able to attend any of their meetings, since they meet in inaccessible spaces.

And why does it matter?

Because there aren’t two groups: Feminists and Disabled, Queer and Disabled, Christians and Disabled, Politically Aware and Disabled, (Insert grouping here) and Disabled. We are the SAME. Sure, it might be convenient to try and separate the two, to try and leave those who are people with disabilities and impairments behind, to not speak up for those who often do not have a presence and voice loud enough to be heard. But on practical reasons, it is more than slightly hypocritical to be advocating for equality, for acceptance, for inclusion while those who are just too much damn trouble or who can’t ‘keep up’ are tossed out the back. Feminism is about the lives and struggles of women, and if sickness, if being labeled hysterical, if being misdiagnosed, if being a caregiver, a PWD isn’t a strong part of that message (which I must be missing between the important issues that rage through the blogsphere from endless women born women issues to the evils of beauty industry and those who take pharmaceuticals) then what is?

No it isn’t pretty for Christians to talk about a loving God or a doctrine of Health, Wealth and Obedience and then try to explain us 1 in 7 (the number most countries find where someone has a permanent disability/impairment). Christians don’t talk about God loving with cancer, or with fibro, or with MS (though it strikes 1 in 750).

I live in a country where the last national legislation put through was RDSP’s – where you give money from your excess savings for your retirement and the government kicks in about $25,000 over 20 years. We don’t have a national disability act, we have staggering rates of unemployment for People with Disabilities and they pass a savings program where you give your money to the government for 20 years. Okay. Will this help those who have children who are dependants even into adulthood? Yes. Is this a significant step forward in the rights of people with disabilities? Are you kidding? Ask anyone in a wheelchair if store clerks, government agencies, people on the street or restaurants servers would talk in the same tone to someone else based on gender, orientation or race? Or rather, when was the last time, as a woman you went to lunch with work colleagues and the person taking orders ignores your order of a chicken salad, turns to the man sitting closest to you and asks, “What does she want to eat?” Would that be considered a feminist issue? I ask because it is so commonplace that it’s just another wheelie joke. When was the last time you tried to enter a store and had the manager come out and tell you “This store isn’t capable of accommodating people like you?” Any interest from LGBTQ or religions yet? How about coming to a hotel and being told, “We can’t accommodate your type here.” Any interest from equality advocates of Race, Gender, anyone?

When you volunteer at a political campaign, do you have to have three different meeting and sign up to 10 pages of documents of liability waivers, all drawn up by someone who has no medical training? When you go into a job temp agency, how many months of “orientation” do you have to work through before you actually have your resume submitted to the pool? I am guessing about 1 day for people NOT going to a disability work assist program. Still not an issue worth fighting for? Or is it just the people not worth fighting for?

You may say to me, “What did you do on disability rights when you were writing feminist/Activist/LGBTQ posts and articles?” Here is the answer: NOTHING.

Okay, does the fact that I was stupid, a bigot and choose to ignore a segment of the population which were NOT separated from me, but rather part of the groups I was championing (but in bigotry ignoring in my coverage), mean that you get a BIGOT FOR LIFE pass? I guess only you can decide that.

I was and still am adamant about women in sports. I was and still am an athlete. And if you can’t understand that what I write about sports or my athletics now is as or more important than before well, then educate yourself. I am twice the athlete I was: I am weaker, I will go to no championships or tournaments, I will not stand among those photographed or nominated as women of sport yet I embody the very reasons why women choose and benefit from sports far more than ever before.

No, I don’t blog about my lesbian partner of 14 years and I going to this club or that film festival. I don’t have the energy to blog about emerging lesbian sports figures, or directors or TV coverage. But I do blog about a lesbian couple where when things got tough, when there was no support from community or family, one stayed to caregive for the other while doing a full time job and advancing her career. No, not as heart warming as the documentary of Saving Grace, a lesbian couple having a child, but a lesbian experience all the same, and one worth celebrating. Since when did “caregiver” become a dirty word?

Linda tells me that I am too blunt for my own good. And most of me wants to say, “You fuckin hypocrites!” but you know what, that’s not my closing message. This is: I spent my life fighting a fight in which I patted myself on the back while ignoring the very people of the group I was advocating for which had the least voice. Do NOT make the same mistake as me. Because I am your future, and that isn’t a curse, or some vengeful spite, but a statement of fact: we are born, we get sick and we die, you cannot stop this from happening to those around you, to those you love and even to yourself. Forbid that we should accept that yes, we are NOT in control of ourselves and our future and that maybe all those people aren’t lazy, deserve it or what other excuse you come up with to distance them from yourself. All you can do is by trying to deny it, deny those who NEED you, who are still waiting for you to ensure they are included. You don’t have to worry about an angry mob of people with MD busting down your church doors, invading your political volunteer station, your gay club – in some ways I wish you would. If this isn’t your problem, then it isn’t anyone’s problem.


cheryl g. said...

Beautifully written! I hear of these things and am so angered and saddened. I have been thinking a lot lately on ways one could protect themselves in situations like that with the case worker. Still thinking...

Remember, tact is just the ability to say "Nice doggy, nice doggy" while reaching for a really big rock.

kathz said...

Well said. One of the things that all human beings have in common is periods of helplessness and dependence on others. If we're lucky, this is just during childhood and for brief periods of illness. But most of us have longer term illnesses (including mental illnesses) or medical conditions at some point and need other people to look after us. Most of us will experience some form of disability in old age and need other people to care for us. This doesn't render us stupid or rob us of our individuality and emotions. And while we may get things wrong in our interactions with people who have disabilities or other differences from ourselves, we still - as human beings - have the responsibility to do our best, to listen and to try to understand. If we do none of those things and simply ignore other people, we are closing our minds and limiting our own capacities, as well as causing damage, distress and danger to other human beings. As you say, disability rights is a human problem.

Olivia said...

So well said. I feel like your words (in many of your posts) are having an important effect on me, like I don't know the full effect yet but will be mulling over them for a long time to come. A formative experience. Thank you.

Katrin said...

thank you.

The Goldfish said...

I do like you when you're angry. :-)

Disability is without a doubt the poor relation of egalitarian issues. Which is not to say we have it the hardest by any means (it all depends), but disablism remains acceptable relative to other forms of prejudice. One just has to regard the number of times mental ill health labels are used against opponents by those who advocate equality for all.

Elizabeth McClung said...

Cheryl: It is a sad but unfortunate reality that ensuring my safety in my home is something I now feel I need to take seriously. I keep asking Linda for the Taser, she keeps saying no.

Kathz: Yes, I agree with everything you say in the first several sentences and come under the "too late too wise, too young and stupid" catagory. Though I visited people in hospital, and from my church and sent cards I never once thought, "That could be me." Nope, I was the giver, never considering I would be the dependant. Never really considering they were equal to me in inviduality and emotion (as you say), or desires, or ambitions, or FRUSTRATIONS, or fear. If you know 3000 people then you will know several people with MS, at least 1 with Lupus or Crones, several with Fibro or CFS/ME, several with breast cancer, a few with other types of cancer, a couple dozen with arthritis (minimum), and several more with chronic conditions, as well as hundreds to 1,000 who have at least one episode of major depression, are within the ASP (austism spectrum disorder), bipolar, or other mental illnesses. That doesn't even count just getting old. It is what is means to BE human, in many ways.

Olivia: Okay! Thanks for letting me know and the compliment.

Katrin: Sure, but here after I think two days ago I said I wouldn't start doing disability activism (talk about weak willed).

Goldfish: Good, I'm glad YOU like me becuase a lot of people don't like it. I reached the "unacceptable is unacceptable" level and I think the fact that people I know are saying, "Oh, that poor person in the wheelchair in Florida" while they have SAT there as I am ignored or talked about by a server as an object in resturants, or patted on the head in elevators, tipped me over.

As for mental health labels- good! The most respected leaders tended to have mental health issues: Lincoln did, and so did Florence Nightingale who created modern nursing, Churchhill certainly did while FDR, oft considered one of the other "great" presidents was a wheelchair user.

Trinity said...

Thank you.

belledame222 said...

I like you when you're angry, too.

I just wish there weren't so much to be angry about.


raccoonKathleen said...

When I was growing up, one of my mother's friends was a foster parent to kids with cognitive disabilities. I hated going over there. Their presence disturbed me.

15 years later, I was still uncomfortable around people with any type of disability, and avoided them as much as possible. Now I be one.

My observations show me that this is normal for too many people. They don't want the reminder that this could be them. It disturbs them, often times at an unconscious level. They cross the street, to avoid coming in contact.

So long as it is an abstract consideration we can deal with it (prayer requests, get well cards, etc.). As soon as it becomes concrete (a family member, an immediate coworker, a next-door neighbor)...

cheryl g. said...

Hey Sis

Put chatting about ensuring safety on the list along with planning world domination. I would say no to a taser too and I'll explain why when I see you.

Penelope said...

This is incredibly wonderfully written.

Thank you for writing it :-)

Neil said...

Well spoken, Beth!

I called the office of my MP, Ralph Goodale, over a week ago. The nice lady said they'd mail me copies of federal legislation; then she called me and left a message on Wednesday. I returned her call yesterday, and was told that they couldn't send me anything, because rights of the disabled are Provincial Responsibilities...

Beth, d'you mind if all Canadians here send the URL for your blog to our MPs? They eed waking up; after all, isn't there a disabled Conservative MP from BC?

Thank you for being so damned eloquent Elizabeth. You just go ahead keeping waking people up for as long you bloody well want!

Zen hugs to both of you.

Elizabeth McClung said...

Trinity: Thank you for commenting to let me know it mattered (truth be told after posting this I was kind of expecting a bunch of "how dare you"'s) - so thank you is WAY better!

Belledamme222: Yeah, I wish, in the end, that it was a wonderful world; that I would have time and energy to worry about other things; that I wasn't such a self loving advocate a little TOO far up in my ivory tower; and I wish I didn't have to get angry because I KNEW the answer to these issues and could explain in some short easy way - but I think, that if relationships between two people who already love each other still take commitment and hard work, then respect, understanding and equality for all people is probably going to take at least that.

Raccoon: Yeah, thanks for sharing that about yourself. I did a lot of the same cycle and we have to break it someone (any magic answers?). I was yesterday on a site for guys in wheelchairs to hook up with women and one of the hot questions was, "Would you date a woman in a chair" and the answer was "No." or "No, they creep me out." or "No, I never liked being around them before and that hasn't changed" - Also, I notice that even with "concrete" it sometimes takes relations or friends some time to accept it (or some don't and drop away). What I am supposed to say, on the one hand, I'm about as terrifying as a wet kitten, on the other hand I have the mouth of Dorothy Parker and on the third hand (I have one of those), even I am terrified some moments when I look too long into the future.

Cheryl: Okay, why is it no one wants me to have the Taser - because I'd keep using it? But world domination comes first right?

Penelope: Thank you for letting me know it was worth writing. I don't want to be that unapproachable person who is always angry. But this time, this week, I was. I guess I have to acccept that part of being human too, huh?

Neil: Yes, please, pass on the URL as oft as you please since often we can't come in bulk to lobby, it would nice if they came to us (virtually) and got SOME idea.

As for the conversation and promises and then the retraction and you need to contract the province, etc: Welcome to the Disability Canada attitude of "Sorry, that isn't the 'inch' of disability I cover, please go to the next person....." and on it goes. If you want to go back you might want to remind her that a) The inclusion of being free of discrimination is a FEDERAL right, and how is that defined? b) That for example the RDSP, is a FEDERAL disability law (of which there are many), c) That they might want to get you the conclusions of the committee which has been "studying" a Canadian Disabilities Act for....over 20 years (Federally) and d) That one of Harper's Election promises WAS to pass a Canadian Disabilities Act and I am sure as your Federal MP, he would know what questions have been raised about that and where the progress of that stands. (well mostly likely he wouldn't be if one MP starts asking questions maybe others might remember and start asking questions too!)

Yes there is a wheelchair user MP who flies into Victoria a lot; I should look him up (I remember the baggage handlers at the airport saying it was a he), and find out what he has been doing becuase though the Federal Government gave Rick Henson $30 million and the BC government gave him $15, as I checked with the Rick Henson Foundation two weeks ago, they have no interest in promoting anything except funding for thier limited definition of spinal cord injury - which means that someone with spinal MS, who becomes paralyzed does NOT have a spinal cord injury according to the Rick Hensen Foundatation.

Sorry, that one kind of went on - as you see, I do stir up things locally, but I tend not to blog on it becuase Canadian politics is like some dense brain fog that even those involved are unsure exactly what is going on (Like why two days ago did BC become the first province to alter the constitution to promise a "sustainable" health care after which the Premier's rep said, "This will not contradict any Federal laws in place." - What? That's not good sounding? What did they just do by adding that word?

Zen hugs to you too!

yanub said...

Elizabeth, this needs to be sent to every politician and policy maker everywhere in the world. Every voter needs to read it. Every "progressive" and every conservative.

Four years ago, during the last national US elections, I went to my county's Democratic convention to try to get support for the restoration of the ADA. One other person agreed with me that the ADA needed to restored after our Supreme Court has so substantially demolished it. Everyone else said "the disabled shouldn't be given 'special rights'." "Special rights" is also the term employed on the right to argue against rights for gays and lesbians. It smacks of the arguments used to denounce anti-lynching bills in the past and hate crimes legislation today.

That day, I saw the local party activists in a whole new way, and it wasn't pretty. As you say, "If this isn’t your problem, then it isn’t anyone’s problem." These people, who will not accept it as their problem, are doing their level best to keep society as a whole from accepting the problem. They should be ashamed but instead they pat themselves on their own backs, thinking they are better than their political rivals. I hear the argument, "oh, think how much worse things will be if the other side gets elected"--as if we should be grateful that the size of the crumbs we will be offered might be larger. I don't want crumbs. I want a place at the table.

Neil said...

Thanks again, Beth! Ralph's office lady wasn't very persistent, I presume. It didn't take much Google time to find that section 15 of the Canadian Charter of Rights and Freedoms already guarantees equality under the law for Canadians with disabilities.

I shall try again with a letter to his office, point out the things you mention and the bits I've found.

Hey, Rick Mercer's going to train with the national men's wheelchair basketball team this week on CBC tv. You think maybe if the government won't listen to you, he would?

doctor trousers said...

You know, making this public is probably the only way to tilt the world back to where it's supposed to be.

Let's face it, legal recourse and polite activism gets gobbled up by blowhards with thesauri. Simply telling your story, making it public, spreading the word, is such a powerful thing. Making it concrete with names and times, just like the news reports about Charlotte Marshall Jones - she'll never get another decent job will she? She may not get a just and official punishment, but she's already been judged by every person whose read her name. From personal experience - I was told that there would be no action taken regarding a serious incident towards myself. So i told the honest truth to anyone who asked, without buffing or witholding information. And by putting the story out in public, where the accuser doesn't have the benefit of "innocent until proven guilty", or the sneakiness of anonymity, there was more change made than if I had had a token, confidential apology. Yeehaa! (oops, sorry about the threadjack)

Elizabeth, ROCK ON!

long live the kangaroo court!

tornwordo said...

Yeah, that was a good one. I have to admit my guilt trip detector went off, but coming from you, I know it's much much more than just that.

ms.cripchick said...

OMG, i can't believe the situation with the angry PA happened to you. i don't know what i would of done, there is nothing scarier than feeling vulnerable to someone who is upset with you (and if you CAN call someone like the police, like you said, you can't even count on them to respond.) something like that happened to a young boy here where i live, the parents fired his nurse and one night came in his room b/c his vent was beeping and the fired nurse staring through the window at like 3 am.

that's the hard thing about PAs, you're all the sudden thrown into this position of having to be an employer, a manager, a PR person all without any training. and the person you are in charge of is the one who gives you help with everything and has so much power if they want it. so much abuse happens and is not talked about.

i'm glad you're angry---good things can come from anger---but i want to give you a hug too (are you open to this? lol). sorry you had to go through that shit elizabeth.

shiva said...

Awesome post. *applause*

The one tiny bit i would disagree with a tiny bit is the bit about "I am not oppressed by the patriarchy" - because IMO patriarchy (along with capitalism, the class system, etc) forms *part* of the framework on which disablism is built, and they all intersect with each other... and i'd also argue that "the patriarchy" (i think it's a more useful term without the definite article, as to me "patriarchy" is a pervasive ideological system rather than T3H MENZ CON5PIRACY!!!11!) isn't just composed of men.

But otherwise... fucking awesome :) Another "thank you"...

ArrogantWorm said...

I like reading you angry, it's an eloquent post and putting your experience of wasn't-but-now-am really gets the point across.

Also, I vote for the taser. Seriously, it isn't a bad idea.

sarah said...

hey elizabeth
i am trying to write something about the links between queers and people with disabilities-- struggles, culture, etc. i would love to quote you-- this paragraph rocks:

Because there aren’t two groups: Feminists and Disabled, Queer and Disabled, Christians and Disabled, Politically Aware and Disabled, (Insert grouping here) and Disabled. We are the SAME. Sure, it might be convenient to try and separate the two, to try and leave those who are people with disabilities and impairments behind, to not speak up for those who often do not have a presence and voice loud enough to be heard. But on practical reasons, it is more than slightly hypocritical to be advocating for equality, for acceptance, for inclusion while those who are just too much damn trouble or who can’t ‘keep up’ are tossed out the back.

Cooper said...

Don't back down...keep on keepin' frustrating and torturous at it may the long run, it's going to make a difference - if I had a magi9c wand I'd wish for a short term solution as well...

Elizabeth McClung said...

Yanub: That is a pretty depressing story I was appalled with the "special rights" line, to which I have always felt, "Yes, basic human rights are SPECIAL, because they should apply to everyone equally, no matter what their disability/orientation."

Ack! Ack! I agree, I think when parties get into a win politically instead of like "actually solve problems" then we are all kinda screwed (now I am going to retreat while people yell that I should learn to live in the 'real world').

Neil: You can always try Rick Mercer, I hope that being in a chair OUTSIDE the gym educates him (if he does that), I would like nothing more than a Mercer rant, but would most people even know when he was being sacastic, are they educated enough on disability issues yet?

Dr. Trousers: I think with Charlotte Marshall Jones, she might already have been recruited to work as a supervisor for the penal system (I actuallly hope that is a joke and not a reality). I'm all for Rock on, I'm just a little confused, When did I start advocating Kangaroo Courts? I just think that the power of a Blog is that you CAN narrate what shit happens when you are vulnerable and you have tried other avenues and no one cares, well at least your story is out there somewhere. I keep thinking of that Kid a few years ago at ex-gay came and how his blog freed him and got the camp investigated for abuse.

Tornwordo: I I amend that, I sit more guilty than anyone, and maybe part of the anger is toward myself as well, but that because I was this way doesn't mean it has to stay this way. Look back a couple days at a post I did called, "I'm not longer 'important'...thank goodness" where I talk about just that. Waking up, too wise but maybe not too late.

Ms. Cripchick: Yeah, I was pretty freaked when she locked the door and walked into the light and I saw her face. Linda said when she called me 1/2 an hour later she could still hear the fear/terror in my voice. Thanks for the hug! But you are right, How exactly do I "manage" people when I am vulnerable to them; they slack on thier job, it isn't like taking a smoke break, it is like, I don't eat for part of that day. And unlike other situations, I am very vunerable to recieving the anger of someone have a bad day - as it is just them and me.

Shiva: Thanks. I think I sort of understand what you are staying about the idea of the "patriarchy" - I just wanted to get across that the care home company is managed entire by women, Triumph by women, and that they probably see themselves as female friendly, as upholding feminist values; religious values, political values - that I was scared of a woman in my home, that I was abused by a woman at triumph - and that there isn't a easy "tag" of 'Oh, it is all the male managers fault' - that's all.

Arrogant Worm: thanks, I don't think I'll be doing a lot of these (unless people keep discriminating against me and people with disabilities.....but that would never happen, right?). YES! I will tell Linda, vote for the Taser!

Sarah: Steal away....I mean, quote away - I am honored that something I wrote could be used for a positive purpose elsewhere.

Trinity said...

Elizabeth: I actually liked "I'm not oppressed by patriarchy" because it's nice and loud and a slap in the face to the people who think women are less abusive, less bad, less whatever.

I mean, I was just peeking at the usually totally awesomeful blog of Nezua's, and he was saying something like that he hoped Clinton wouldn't be a hawk because she's a woman -- that whole woman as peacemaker thing. Coming from someone who is in no way dumb on feminist issues and who I respect a TON.

And one big thing, one really really huge thing that I think props up this whole system of abusing pwd, is that so many of our caregivers are things that are coded as "helping": aides, nurses, therapists

and, yes, WOMEN.

I think part of why this isn't stopped just is the assumption that a woman could never hurt someone. (just as I think a lot of murders and violence against us get excused because a parent could never hurt hir child.)

So yeah, I do think there is a patriarchy. But I think "hey, the Pat really has fuckall to do with this, actually" is a good wakeup call.

Marla said...

Congrats on all your nominations and awards.

These stories are all so awful. Painful to read about.

Daisy said...

Wonderful post, but I am furious these things are STILL HAPPENING!

Belledame linked you, and I wrote this on her blog, apologies for cross-posting:

Ohhhhhh. My mother was born disabled, and regularly threw a fit in such circumstances.

That situation? It would be like, "No, motherfucker, you write it. Do I look like I can write it?" Throwing things, loud cursing, insults of personal appearance and intelligence, demands to see bosses, etc etc would undoubtedly ensue. At that point, she was no longer regarded as simply disabled, but considered a white trash hillbilly for being so loud. (And deliberately loud, too.)

She embarrassed me terribly with that shit, while simultaneously instilling in me the concept of fighting for what is right and just. I was torn, constantly. I admired her as if she was Rosa Parks herself, or Queen Elizabeth, yet wanted to hide at the same time. I loved her so much, and yet hated the public rows she caused.

But as I grew older, I found them exciting. On at least three occasions that I recall, I started them on her behalf.

My mother had a tremendous influence on me in countless ways; I've been imprinted, no question.
And you know, I just realized: I was never allowed to fool myself, thinking of myself as forever young and able, someone who would never get old.

Why? Because she regularly reminded everyone.

Veralidaine said...

Excellent post! Okay, can I come out now? I'm AB. I don't usually say so outright, though I also don't deny it, because there sometimes are angry reactions to an AB in the midst of a bunch of blog commenters or chatters or forum posters with disabilities, ranting about disability issues- "You're not one of us! You don't understand, you can't be angry!"

But yeah, I'm an AB. I'm not a parent, spouse, or even sibling to a person with a disability. My best friend growing up had a brother with CP, who was like my own brother with how often I was at their house, and that probably started me on being angry about disability issues, but a lot of it is just me being me. Part of me is that it downright pisses me off when people abuse the segments of society vulnerable to abuse.

Elder abuse in nursing homes? Pisses me off. I'm an activist for home care. Animal abuse? That one triggers Incredible Hulk Girl mode, which is when my rational brain decides to spend spring break in Cancun and the rest of me is busy using bolt cutters to free a chained dog that's busy trying to bite me, and use the stub of chain left attached to it to lead it to the car while still trying not to lose an arm, and take it home with me because someone had to leave a short haired dog out in -15 (Fahrenheit) and I saw it.

And abuse toward people with disabilities? I see it more, not less, as I get older, and that really gets my goat. Now that the ADA is passed, people think all the issues are solved, and we contented ABs did our part and don't need to worry about disabilities anymore? News Flash: The ADA is not invulnerable. It's not perfect. It doesn't take care of every issue related to disability, nor will it take care of ANY issues if it keeps getting weakened by conservative lawmakers who think "save some money" is synonymous with "take some money from protections from anyone who can't fight back."

My legs work fine, my back bends in all the place's it's supposed to, and my most serious diagnosis in my lifetime has been appendicitis. But damnit, I'm still pissed off about disability rights, and it IS my problem!

Dawn Allenbach said...

I don't know . . . I have MD, and I get an urge to bust down a door now and then.

Elizabeth McClung said...

Trinity: Well, actually, that is a pretty good articulation of what I had been feeling since I had been fighting my landlady who laid nails down in front of my door and kept me trapped, agencies, and they were all women and this was part of why I was feeling a bit like, "I'm sure the patriarchy will abuse me when I finally get to them but right NOW, I'm actually being abused by women, and probably ones who consider themselves feminists." I mean, when your big sister comes back and tells everyone how they are failures and SHOULD be living thier life and might succeed if they only listened to her, that isn't the patriarchy is it?

Marla: My major concern right now is that eventually I will become so USED to stories like this that they will fail to cause a reaction in me anymore.

Daisy: Well, it isn't directly applicable but I would give almost any amount of money to hear my mother call anyone a "motherfucker". But yeah, it is a good point, your mother had every right to be upset, even if that isn't how it is "done", to be treated as a lesser person because she was disabled. Actually, I don't know if I HAVE ever called anyone a motherfucker.

Veralidaine: I hope this blog doesn't come across as anti AB; since I know so many AB people (like Linda) are so intimately involved in the lives of people with disabilities and even for those who aren't, well I hope I am interesting enough to take some of the "Scare factor" off of someone with a disability. And no need to have a disability badge or know someone to read here, just a high tolerance for sarcasm, yaoi and other good things.

Yeah, I too see that people seem to be callous of people, but then, my view has radically changed so I can't say for certain if I am more aware because now this does directly effect ME. But I am glad you commented that it does involve you because that was the whole point of the piece I think - not just about "Why won't someone do something" but so all people, yes, able bodied people, can say, "Yes, I don't want to, and I'm not going to stand for this kind of discrimination any more." So thanks for being critical of the ADA, and being pissed off (cause I'm tired now and have to go to sleep so you can be pissed for both of us!).

Dawn: Yes, I suspect, most MD DO want to bust down doors but until more tank chairs are built, I just don't think they are feeling the fear.

Liz said...

I hear you. It is difficult for me to understand what it is like, but being deaf (a hidden disability), I have experienced quite a bit of discrimination. But not as much as those with more visible disabilities, who rely on carers and so on. My particular issue is trying to bust stereotypes - expectations that people have of deaf people, of how we communicate and so on (I don't use BSL but I have friends that do and they really get discriminated against). It really does make me angry too, and it is so important that we get our voices heard as disabled people (and women).

Treble said...

Thank you for this post!

A few years ago, I was sitting in a Tim Hortons with a friend, which was at the time (and is likely still) one of the very few properly accessible public building in that neighbourhood. The woman sitting at the table next to us was in a wheelchair and we struck up a conversation that led to accessibility and disability rights. I came away from that conversation feeling like I understood nothing, even though I suffer from Fibromyalgia. It's not really a conversation I like to think about a lot, because I think I could have been a lot more receptive to what this other woman was saying, but your post helps to pull it all together. I think next time, I'll stop looking for the reasons why there isn't accessibility and thereby trying to excuse it.

Moonwolf said...

I found your blog from over on Ouch!, where you posted about the "behavior modification".

Nice posts, even if the subject in this case wasn't pleasant :(

CrackerLilo said...

I came here via Lisa. I don't really know what to say, except thank you for the needed perspective. A long time ago, another student at my college said that the disabled is a minority group that anyone can join at any time. (She said this as a recent amputee in her 20s.) It hit me hard. This did the same again. It's a lesson that needs to be hammered into the public's head, over and over again.