Monday, January 21, 2008

A culture free of disablity's presence, or even a place in the imagination

I have no desire for tomorrow because a) the worker who woke me ripping up the carpet this morning is coming back tomorrow. He said only half the crew showed up but that they will be pounding and sanding and ripping like mad tomorrow, starting about 14 feet from my bed (and come back Thursday to finish the job). And b) I am going to the dentist tomorrow for, what I hope, is the last time (for a while) to have my permanent crown put on. How I will do that in a ripped up floor has yet to be determined. The worker did assure me that he would be done by 4:30 today. Then he added, “But don’t worry, I’ll be back tomorrow at 6:00 a.m.” And belly laughed at the terrified look on my face.

Today, I interacted eight times with five different agencies, including a 90 minute nursing assessment to determine if my care workers can put a cold pack, wrapped in towels, on my body. This is the second to last step of almost a seventh month process of trying to have this added to my care sheet – an important issue for someone who passes out due to heat intolerance. I made the argument that, I know that care workers are not ‘medically trained’ but they must have SOME medical understanding, for instance they wouldn’t go into a client with MS and turn on all the heaters. The community nurse said, “Actually, the probably would....there are quite a few workers who don’t do that well with English.” Okay, when the person assessing you is MORE cynical about the system than you are, what does that mean? Anyway, I was busy ALL DAY pushing boulders up hillsides to watch them roll down again.

I wanted to illustrate (and how it is creeping in on my life) a bit of what is known as “corporate culture” in the branches of government in British Columbia. "Corporate culture" used to be referred to as “Boy’s Club” or “Discrimination” and many other names. Essentially, in a closed environment, a type of attitude is taken toward things because of the way that those higher up view and talk about things, and this spreads to middle management (often because they are hired by the people with these views) until you have this “culture.” Which is why you can work in one department of a government or university and it will have a running club and charity auctions and emphasis on work/life balance. But go to another one and there will be people who are dispirited and the rule of the day is “cover your ass”, “It wasn’t my fault” and “No one will really care anyway.”

British Columbia in Canada, several years ago made some very important laws regarding disability. They actually didn’t think they were making disability policy or “culture” they thought they were ‘proactively turning the red on the government books to black' (from deficit to surplus). The first thing they did was tuck the registration of being a Person of Disability into a subsection of the Welfare department (in BC called MIEA). The idea was that if the people on disability assistance were put under the same regulations and assessments (and compulsory pushes toward job seeking) then a smaller percentage would still BE on “welfare”, thus red turns to black (see, this is the first change, that disability assistance was now, actually, welfare, not a recognition that those with disabilities might individually or as a group have special or specific medical issues which would need to be met by the public sector, but that they and people who were receiving "welfare" were, in essence, the same).

So, not disability assistance anymore but a subsection of welfare: and if you have no need for welfare, or no proof you haven’t applied for employment insurance, then there is no way to apply to be a person with a disability. So, if you are a person with a disability in BC and you live with a partner or have income which is below the poverty line but above the qualification for welfare, you do not show up anywhere as a person with disability to the government of B.C. (off the radar!)

The second change was to “Shake out those cheaters and welfare scammers” (US, the disabled) by ELIMINATING legally, that someone could be permanently disabled. So, yes, if Mr. Reeve (if he was still alive) or another other high para lives in BC, they need to show up every three years to be assessed because they are NOT permanently disabled. Indeed, legally, no one of a permanent disability lives in BC at all (or visits, so sorry Rick Hansen; Vancouver is hosting the paralympic games in 2010: 10,000 athletes from around the world and not one, according to the province hosting the games is permanently disabled.)

Now you might think that is just because B.C. is very optimistic and that hey, ALS isn’t a permanent disability because a cure is around the corner, as it is for SCI’s, etc. But the problem is that governments make decisions based on the statistics gathered from government branches (particularly in a government based system like Canada). So, the problem is that the recreation needs, the representation needs, the technology assistance needs, and all the legislation regarding people with disabilities is taken from MEIA. But MEIA’s system is one where many, perhaps even a majority of people with serious physical impairments and yes, permanent disabilities are invisible, unable to be counted because they simply don’t show up ANYWHERE on government stats. Which doesn’t stop legislation and other decisions being made which will impact them.

So, I live in a country with no disability act, in a province with no disability act, in a city with no accessibility code for buildings (which is the capital of the province of B.C.). And because of these laws, there is a culture that actually feels that those with disabilities can be treated as if they don’t exist. For example, the new hiring roll out of the Provincial Government which targets are now set to attract X% of students, X% of new immigrants, and to encourage immigrants to sponsor other immigrants with promises of jobs, as well as targets for ethnic groups. Linda asked, “Do you have any plans to set a target or attempt to hire more people with disabilities?” Answer: No. Amended to, no as our percentages are not that far off the public sector. Wait a minute, the government of BC is DESPERATE for workers (they will pay your entire student loan AND give you a FULL salary if you work for JUST three years for the B.C. Govt., for example), so much they are trying to get people to sponsor people in other countries to come here and work for them but they feel ‘they already have enough disabled?’ Even if there are qualified applicants in town?

I was passed along a conversation which occured in a branch of government within BC regarding the efficient use of property. The questions were coming from a person who was leasing a property for the government branch and wanted to make more efficient use (let’s call them Ms. Q.). They were trying to run this by those people who exist to say, ‘No actually, that IS illegal to sublet a government facility to be used as a meth lab.” (let’s call them Mr. M.)

The first thing Ms. Q. wanted to know was, could she eliminate the disability parking spot all together. Or could she make so other vehicles could use it because she didn’t see the need for a disabled spot. As she said, “We don’t have anyone disabled working for us.” (And implied in that is, ‘and I don’t expect us to ever have someone disabled in the future either’). Mr. M tried to explain that maybe someone disabled would VISIT the building so they should probably keep it.

Then there were bathrooms, Did they HAVE to make a bathroom wheelchair accessible? That is what Ms. Q wanted to know. Mr. M. had to admit that NO, she legally did not but again, what if someone at that office fell and broke their leg or what if someone who was in a wheelchair visited?

I have not yet found out if Ms. Q got her way in the elimination of a wheelchair accessible bathroom in a branch of government leased area.

What I mean about culture is that, if for example, an small branch of say, engineering or forestry said, hey, we don’t have any women here, why do we need to have TWO bathrooms, let's turn the women's into an coffee room? Well, that would scream “Boy’s club” because then, how exactly would a woman get a job there, when the culture is such that they don’t even see the need or anticipate that a woman would WORK there much less visit there?

Only here we have a REAL example of someone, instead of saying, do we need one or two designated disabled parking spaces is asking, why should we have one at all, as a(REAL) person could park there? Why should we have a spot or a bathroom as we cannot imagine a time when someone would work or even visit us with a physical impairment? And this is from the PUBLIC section; the one who is supposed to be PROTECTING us (hollow laughter please). As Mr. M pointed out, which Ms. Q had not and could not imagine, what IF, in the FUTURE, the laws changed, and there WERE disability laws and standards for buildings and a disability act?

Will the fear of the HASSLE of having to make the crips a bathroom in some distant future convince Ms. Q to order it to be built (when that could be a very efficient office space instead)? I will have to wait to find out.

But you can see what I mean=, these are not the “All crips are worthless” crowd. Ms. Q is a real person who represents many other people who after years of being in a public sector where there is no representation of people with disabilities nor public awareness of the 1 in 7 aspect (that 1 in 7 people have some disability), cannot imagine a world where they would share the same workspace with a PWD.

That clueless, innocent aspect is perhaps what scares me the most, these decisions made behind closed doors by people who are told to be efficient, to report to supervisors and department heads (and who are doing it for YOU, the public and taxpayers, as RESPONSIBLE GOVERNMENT) and none of whom have ever thought or considered or been raised in a workplace (or city for that matter) in which disability rights are actually considered just that.....RIGHTS.

Your reporter, trapped in her apartment for another day, from the surreal world of British Columbia (motto: The BEST place on earth) – signing out.

21 comments:

Lisa Harney said...

You reminded me of Michelle Dawson's attempts to get the Canadian government to acknowledge that the organization for autistic people (I can't recall the name) was actually in violation of Canadian law because autistic people weren't actually allowed to be in leadership roles, and were shut out of any kind of active role in the organization.

Of course, she was fired from her job after she was outed as autistic.

Not British Columbia, but it was something else I came across that surprised me - I expected Canada to be a bit more advanced in regards to disability issues (as it is on other social issues) than America.

Also, thank you for outlining the "corporate culture" thing. I knew the term "corporate culture" in a more general way, and knew of the phenomenon that you described, but I'd never connected them. Learn something new, etc.

Perpetual Beginner said...

Yeah - I'm afraid my Dad (a neurologist) has had to run off to the emergency room at least once because an aide had given a patient with MS "a lovely hot shower".

Er - hi? I've been reading a while, but this is my first comment.

And grrrr to BC. Pretending PWDs don't exist is, if anything, more infuriating than being actively unhelpful.

Gaina said...

Ah, so it's not just my government that is trying to sweep disabled people under the carpet? Sucks for you but it's a small comfort to me **wry smile**.

Sometimes I seriously consider the possibility that all disabled people would be better off buying their own Island with a few disability-positive AB people so we could have a country that actually works in our favour!

It's really interesting when my friends say to me 'I was out in town the other day and I realised how I've started looking at the world in a totally different way since I met you' - and that's from friends in countries that are pretty switched on to disability issues like America!

I know someone with Cerebral Palsy who lives in BC and he made a video about what it's like to be disabled there, and he nearly had me convinced that moving to BC would be the best thing for me as a disable person, so I'm really glad I get to hear the flip-side from you.

lilwatchergirl said...

I've always wanted to live in Canada. I'm starting to think, after reading your posts, that it wouldn't be the best idea for me.

Move here. Seriously!

FridaWrites said...

Thanks for the info on how Canadian laws worked. I was wondering. Mrs. Q. sums up what's wrong with the world, I think--me me me mentality.

That irks me, too, that no one ever tries to recruit people with disabilities into jobs. 70% of people with disabilities are unemployed, and I can't imagine that all of them are completely unable to work, though probably many are. Many could do some jobs with more accommodations than employers are willing to give. Who has the energy for lawsuits when employers won't accommodate? Daily tasks are already difficult and appointments/scheduling issues are prevalent.

Lisa,
Fired for autism? When she did the job already? GAAAAH!

Lisa Harney said...

Frida,

Yes - or rather, she was put on indefinite unpaid leave, even though she hardly missed a day and did her job well, but telling her employers that she was autistic meant losing that job.

Article here.

FridaWrites said...

My son's autistic and also communicates fairly well. I should have said that. Scary.

Dave Hingsburger said...

Hi, just a real quick note to let you know that Screw Bronze has made it to the final round of voting in the Canadian Blog Awards in the category of Best GLBT blog. So the first round of voting is over and it's down to you and four others. The voting starts tomorrow and runs for a week. I'll be voting first thing in the A of M tomorrow. Congrats -- Screw Bronze, Go for Gold.

Dave Hingsburger

Lene Andersen said...

Forced out of self-imposed computer exile (my injured elbow so won't thank me), but having worked in the employment equity/disability/accessibility field, I got curious when you said that B.C.'s got no accessibility code, etc. Being mostly familiar with the relevant laws in Ontario, I poked about on the net. As a person with a disability, you are protected under the Canadian Charter of Rights and Freedoms. B.C. also protects people with disabilities under the B.C. Human Rights Code (in e.g., employment, housing) and the B.C. Building Code. Now, I suspect that the building code would, like Ontario's, be rather inadequate and at least a decade out of date in temrs of e.g., turni9ng radius, etc., but you do have it and it should have certain minimum standards. Of course, in order to find out the details, you have to buy the bleedin' thing and if you do, I wouldn't be surprised if, like Ontario's, it's got some funny standards of access (e.g., back when I was working in the field about a decade ago, a building was deemed accessible if there was a button on the front door. No requiredment for what's called a path of access once you're inside the building.

Anyway, my arm's quitting on me. Gotta go.

Marla said...

Argh!!!!!!! How frustrating. It just seems like common sense to assist someone with a cold pack. I would never have dreamed it would have to be written into an order.

By the way...your book has been in my dreams! The building, the space Zed sleeps in, the halls. Very vivid in my head. Wild! I am loving it.

Lene Andersen said...

Hang on (my arm's really gonna hate me). See, I'm not sure about Mr. M being right that Ms. Q doesn't have to have say, include accessible bathrooms in a gov't building. In Ontario, you have to (based on the Ont Human Rights Code). I don't know enough about B.C. to say whether that'd apply to provincial gov't buildings there and I have a feeling this one's going to nag at me for days, until I give in and call someone. Great. Another obsession.

But what I actualy came back for was wondering whether you could file a human rights complaint re: the 3-year assessment requirement claiming undue hardship for someone with a permanent disability? Hmmm...

Elizabeth McClung said...

Lisa Harney: Yes, it is this odd perception that people have about Canada that we are progressive, which is NOT Canadian at all, what we are is collectivist and conservative. For example, in 1969, simply saying that you were a homosexual could get you jailed in Canada as a sexual pervert without control; the ability to vote was withheld from various minorities including Chinese and Japanese until the 1960's. I am sure that once Canada actually does decide that disabled citizens are full citizen then there will be equal rights, but right now, BC is amoung the worst of the 10 provinces as your "human right" as a citizen (since for example, it is the only province which eliminated the position of ombudsperson, someone to champion the trampling of individual human rights against those who had done so).

Thank you for your reference to Michelle Dawson (which ironically, in the article linked later shows.....BC, to be the most inflexible in terms of treatment for children with autism)

Perpetual Beginner: Wow, now that's a side I don't get to hear from often, the neurologists kept busy from the wacky "care giver", Thanks for commenting. And yes, passing a law saying there aren't permanent disabilites doesn't actually make them disappear.

Gaina: I have to say that while I still like the care (Such as it is) I recieve in Canada, I am seriously envious of the simple rights like to be able to go to a resturant, in the US. I would be very interested to see the video as I know two people with SB in Victoria and one in Gibson: the one in Gibson was told, "Why bother with education as no one will employ you" by GB Strong, one of the two here stuck with Triumph (the agency I am working with to get Dragon 9) to get a job for a year before giving up and the other is a volunteer at the paralympic society.

Lilwatchergirl: after reading about the motor thing available in some parts of the UK (where they pay the insurance and take it off to be MOT'd), I am definately thinking that is the place to go.

Fridawrites: Actually Ms. Q wasn't thinking about Me, Me, Me - she was doing this for the best interests of her department and the branch of government she was attached to - thus, she was doing it for YOU, the taxpayer, making sure you got the best use for your money; which in her eyes was getting rid of those useless space wasting things (like disabled parking spaces and toilets).

I talked today to my careworker and she knows personally of many people like me who have the experience and credentials to do part time work (like if 1 full time employment is 1 FTE, there are many of us who can do say .3-.5 FTE - however of the 139 govt. jobs you can apply for this week, 137 required full time employments, if not overtime). So yes, it is very frustrating and hard to sue a system which simply doesn't even contemplate that someone might not be ABLE to work a full time job.

Ditto and the stupid actions of Canada post re Michelle Dawson.

Lisa: Thanks for the Link

Frida: Well, my nephew is too, and I am glad he is in the US, NOT in BC.

Dave: yes, I see I slipped through but hopefully no one will notice - I am glad you got in the finals in two sections.

Lisa Harney said...

For me, a lot of that impression comes from Canadians - admittedly, they tend to be straight, white, able-bodied Canadians.

I used to hang out on Usenet, and one of the favorite activities for European or Canadian posters (not all, but some) was America-bashing. Just "My country is better than your country for these reasons," and the Canadian contingent liked to run down a laundry list of ways that Canada was superior in terms of human rights and such, which, you know, a lot of times Canada [i]is[/i], and a lot of the bashing was deserved, because, you know, America.

So I knew the rosy picture, and I knew it wasn't perfect, and reading your blog has really been an eye-opener.

I can't remember where I saw them, but Michelle has a record of the mail she exchanged with various offices of the government (province and national, I believe) about the way autistic people specifically are treated, and it was pretty enlightening. The responses she received were often "politely dismissive."

Frida, I've been reading Shiva's blog, as well as ballastexistenz, and the attitudes described toward autistic people shocked the hell out of me. Part of it was, yes, I held some attitudes too, but part of it went so far beyond anything I had imagined. I had no idea just how badly people viewed autism, or how many things I thought I knew were hostile stereotypes.

Ugh, anyway. :(

Elizabeth McClung said...

Lene: Well, I don't want to openly disagree with you BUT, you're wrong. The law may exist but BC has removed almost all ways for prosecution have been removed, as you will see, the case will only be taken up IF it is NOT deemed as something which will benefit you personally, but rather the community as a whole, otherwise, as in the case of the Little Sister's bookstore, you carry the entire legal costs.

As for the building code, the varies from city to city; for example in Sidney, 40 miles away, a building CANNOT be rennovated without wheelchair access being put in, however in Victoria, it can, and clubs and resturants open weekly without any access (according to Linda's calling around the ratio of accessible to inaccessable is 1 to 8 or so) For example, there are two coffee houses in my "street village" - one is ground level the other built a patio with two steps up - which is not accessible to me. Government buildings are accessible depending on use and heritage or not - Federal HAS to be, Provincial does not always including public spaces IF it is a heritage site (for instance the Emily Carr Museum). Since Victoria has not put accessibility in it's building bylaws (or in some cases removed them for certain buildings) that makes Sidney a more accessible location, however, in terms of residences AND shops, there is no law requiring accessiblity at all (for instance my parents decided to buy a new condo in a newly built building which, for example, doesn't have the disabled spot - I haven't actually found it yet - near the elevator and the inside hallways of the apartments are too narrow for use with a wheelchair, much less the bathroom door.)

Elizabeth McClung said...

Lene: okay, second part, You can email me and I will tell you exactly what branch, what building usage and who Mr. M was (I think you will recognize the organization). My case manager used to be from Ontario and like many others says that the actual laws and enforcement in Ontario do not make those with disabilities so obvious a second class citizen, while in BC they do: or as one said to me "You have to go where the advocacy is needed".

As for the success of appealing against a ministry for a human rights violation may I point you to the 15 year case involving Little Sister's books v. Canada Customs as well as other cases where the Federal and Provincial branch simply keep going to appeals until the person is out of funds and win by default (as happened in the little sisters book case, because they couldn't raise another 1/2 million dollars). So YES, the law is there, but unlike the US, there is no ACLU that is going to jump in and take on the province. The question is: how many BC permanatly disabled lawyers do you know who want to spend all thier money and the next 5-15 years overturning it?

Elizabeth McClung said...

Marla: um.....that's Victoria Island Health authority, remember, there is no assurances that I will get that written into care, just that we are at the final step where it COULD be written in. I can send you a picture of the building if you want...?

Lisa: there are many things that are good for the majority of Canadians, like health care - however the line our government runs on is NOT individual rights or the pursuit of happiness but "Peace, order and good government" which has always meant that some will suffer for the good of all (or that YOU may not have rights because to give YOU rights would unduely burden the system or skew it). Canadians do live longer, are generally more active and have access to cultural events; but to compare say Montreal with Prince George with a fishing Village in Newfoundland is like three complete different "Canada's" - for example in two of them you have a good chance of being killed if you are LGBT, while in the other, you have a good chance of having maybe even a better life than your counterparts. There was a case on the treatment of autistics in BC, and the supreme court decided...it was best dealt with at a provincial LEGISLATIVE level (the grand judicial passing of the buck).

I would love nothing better than to be able to say that my treatment was wonderful, etc, but as you will see in about 30 minutes, with today's blog, my dentist was more accessible today than my own apartment building.

Elizabeth McClung said...

Marla: um.....that's Victoria Island Health authority, remember, there is no assurances that I will get that written into care, just that we are at the final step where it COULD be written in. I can send you a picture of the building if you want...?

Lisa: there are many things that are good for the majority of Canadians, like health care - however the line our government runs on is NOT individual rights or the pursuit of happiness but "Peace, order and good government" which has always meant that some will suffer for the good of all (or that YOU may not have rights because to give YOU rights would unduely burden the system or skew it). Canadians do live longer, are generally more active and have access to cultural events; but to compare say Montreal with Prince George with a fishing Village in Newfoundland is like three complete different "Canada's" - for example in two of them you have a good chance of being killed if you are LGBT, while in the other, you have a good chance of having maybe even a better life than your counterparts. There was a case on the treatment of autistics in BC, and the supreme court decided...it was best dealt with at a provincial LEGISLATIVE level (the grand judicial passing of the buck).

I would love nothing better than to be able to say that my treatment was wonderful, etc, but as you will see in about 30 minutes, with today's blog, my dentist was more accessible today than my own apartment building.

ljm said...

I feel the need to pipe up and make a comment here. As a citizen of BC who has some limited knowledge of building codes in BC, I can concur that the vast majority of buildings in Victoria are not wheelchair accessibe. In addition to retailers and service providers such as restaurants and clothing stores, I know of several buildings used by the provincial government that are not accessible.

Elizabeth is spot on.

Lene Andersen said...

Please disagree openly with me if I'm wrong and it appears that I am to a rather alarming degree.

Problem #1: CUIC (Computing Under the Influence of Codeine). Problem #2: I think I was in shock. A decade or so ago, when I was working to implement a barrier-free policy, we were pointing to B.C. (maybe Vancouver specifically?? I forget) as the model to follow - especially in parks accessibility, as well as including visual/hearing impaired in barrier-free design. This is... is... unbelievable. Move to Ontario. Mike Harris gutted the system, but it's still better here.

Gaina said...

I've asked my friend if he still has the video and can upload it again. If he does, I'll send you the link :)

Lisa Harney said...

Yeah, I'm not saying "ZOMG Canada is obviously socially backward in all ways!" Just that it's surprising to me where Canada's not as progressive as I thought.