Yearly Archives: 2010

Someone Get This Rock Off Of My Chest…

16 October, 2010intersectionality, introspective, life changes, relationshipschoices, disability, family, intersectionality, mental health, personal, side effectsOuyang Dan

I read a post at Crazy Mermaid’s Blog recently that neatly summarized some things that I have been struggling with lately.

Friends and loved ones of those with a mental illness have a hard time understanding noncompliance with medication. Why, they reason, if the drug helps control the symptoms of the mental illness, doesn’t the mentally ill person take the medication?

One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.

I linked it in my most recent RR, but it hit home so well that I really had to bring it back around here for some tossing around. I have been rolling some things around in my brain on my own like a toy surprise… the kind that can eat you up… and while the particular sitch that Crazy Mermaid describes doesn’t apply specifically to me, it is relevant.

We all have, I think, things in our lives that we face that create little fissures that attempt to pull us apart from any amount of happiness we might grasp onto in our lives. Those of us in the disabled community know that this kind of stress can be especially taxing on our resources as the two sides rub together, causing the tiny quakes and aftershocks of the impending snaps of what we can handle. Sometimes the aftermath of having to live on the fault line long enough results is losses we, as people, can’t quite handle with smiles on our faces, if at all.

These things might not all be catastrophic life situations, but sometimes they are. Perhaps it is, on one side of the fault, the choice to not medicate and along with it the constant shame and scrutiny from doctors, family, friends, and basically everyone you might know (or the lack of understanding of your continued symptoms from those “anti Big Pharma” friends who think you really can have it both ways). On the other, living daily with side effects that leave you with little to no quality of life. Crazy Mermaid listed a few fairly severe ones. I know some of my medications for other-than-mental illness conditions come with their own host of side effects that I had to consider, including vomiting, vertigo, extreme fatigue, and that is just to name some pleasant ones. They can sap your will to get out of bed. You have to weigh these options carefully as the ground trembles beneath you. Often, you don’t have anything or anyone to cling to as you weigh your bleak options. What choice is it, really, sometimes?

Perhaps your choice is whether to accept a job across the country (or the world, in another country you have never even seen before) because it will provide for your immediate family. The other side of that precipice is the close-knit extended family you leave behind: grandparents and aunts and uncles who all had a hand in raising you, some of whom now could use your help as they get older. Their lives continue and you miss the daily events that used to be part of your daily life. The little things that mattered are missing from your life now as your support system is thousands of miles behind you. Their cycles of life don’t stand still because you have moved away. How do you make that choice, and what if you are a partner of someone who takes that job? Do you choose your partner or your family (and how do you choose)? Some of these answers might seems snap-crackle easy… but if you really break it down, they are many faces of the rock to look at. Do you choose financial or emotional security?

How do you make those choices? How do you survive the tremors of straddling the fissure while you weigh your options? When do the rock and hard place stop grinding against you to let you breathe for a moment so you can rest?

Video Post: Rachel

15 October, 2010Videosassistive technology, autobiography, Equipment and Assistive Technology Initiative, Vancouver, wheelchairsAnna

From the video description: Rachel is a volunteer at Science World in Vancouver. She has applied for a power wheelchair from the Equipment and Assistive Technology Initiative (EATI) to be more independent and effective at her job.

The video shows Rachel, a young white woman in a manual chair, at Science World. She’s shown going around the exhibits, helping out children who are seeing things, confirming the various exhibits are in working order, and checking out the computers around the center.

Caption: Rachel Elizabeth Roberts, Science World Volunteer

Rachel: I was in high school and I was placed here to do a work experience program, and I liked it so much that I decided to come back.

I help out with some stuff in the galleries.

I just do two galleries, “Search” and ‘Treasure”, and just talk to customers. You get to meet a lot of interesting people.

And I also make sure to check things are working properly.

It is difficult. I find I get tired from my upper arms, my arms, but it’s okay, I feel like the power chair will help me get to where I need to be faster, so I don’t waste any time. I just go straight to work.

I think it will help immensely because I get to do other things. There’s a whole world of possibilities that I haven’t even tried that I’m willing to try. Work in OMNI, maybe help the staff with stuff like scheduling and I’ll be more independent and just … just do more things, like… like… go for a walk on the sea wall, or with one of my workers, or just, you know, experience new things.

I’m really excited. I can’t wait to see what the summer has in store now that I have wheels.

Caption: B.C. Personal Supports Network Equipment & Assistive Technology Initiative (EATI)

A film by Angelina L Cantada

Canadians: Tell Your MP To Vote for C-304

14 October, 2010accessibility, activism, disability activism, make the world a better place, politicsaccessible and affordable housing for Canadians, adequate, An Act to ensure secure, Bill C-304, canada, housing, Red TentsAnna

One of the ways I entertain myself on the bus is looking at houses and apartment complexes we pass and deciding whether or not we’d ever be able to live there. “Hmm, that looks like a ramp could be built to the front door.” “Wow, that’s a useless step that could be taken right out. Is that there for decoration?” “Damn, I hope no one in that apartment building ever breaks a leg because that’s never ever going to be accessible to people who can’t climb a flight of stairs.”

Finding housing is one of the main challenges facing people with disabilities and their families. Don and I spent months looking for an apartment building in Halifax that didn’t have “just a tiny flight of stairs”. I’ve talked to people with service animals who have repeatedly struggled with being refused housing for having a “pet”, even though such refusal is illegal. Mia Mingus, Crip Chick and their supporters have been documenting their attempts to find accessible affording housing.

On top of this, finding affordable housing when one or more members of your household have a disability can be incredibly difficult and daunting. Disability is expensive, even with Canada’s patch-work attempts at assisting with the many and varied costs. Assistive technology and its upkeep is costly. Medications are costly. Having in-home assistance is costly. “Special” foods that are necessary if one has any dietary restrictions are costly. Transportation, adapted or otherwise, is costly. These bills add up, and trying to adapt or locate accessible housing on top of it can lead to hopelessness and despair. (Certainly it did when Don and I tried to find accessible affordable housing in Halifax.)

Next Wednesday, October 20th, Canadian Members of Parliament will be voting on the Private Members Bill C-304, “An Act to ensure secure, adequate, accessible and affordable housing for Canadians”.

This Bill has been pretty much off the radar for anyone who isn’t on poverty-rights mailing lists – a search through CBC, for example, finds only two hits, one from 2009 and the other in a 2010 blog entry that mentions it in passing at the end. This isn’t particularly unusual, since Private Members Bills, especially ones supported by opposition parties, don’t really get a lot of attention because they don’t often pass.

At the same time, though, this is the problem. This bill explicitly talks about housing as a right. It explicitly talks about housing for people with disabilities. To quote:

“accessible housing” means housing that is physically adapted to the individuals who are intended to occupy it, including those who are disadvantaged by age, physical or mental disability or medical condition, and those who are victims of a natural disaster.

It is so rare to see any bill in parliament that acknowledges disability, let alone one that actually talks about housing needs. It would be great if we could make some noise, if we could make it clear to our Members of Parliament, our elected representatives, that we as Canadians care about accessible and affordable housing needs, so even if this bill doesn’t pass, the next time the topic comes up our MPs know: This is something that Canadians want addressed.

The people behind Red Tents have planned a National Day of Action in support of Bill C-304 on October 19th. Their main event is in Ottawa, but I know there are other events planned around the country: Halifax’s event is all day Saturday and Sunday, for example, and a quick internet search found events in Winnipeg and Vancouver as well.

I would also recommend contacting your Member of Parliament between now and Wednesday to let them know that you support Bill C-304. Your contact with them doesn’t have to be long – mine was only a few sentences – but let them know that you support accessible affordable housing in Canada, not only for people with disabilities, but other groups that are also included in this Bill. You can find the contact information for your Member of Parliament here, but be aware that, like all Government of Canada websites, this one may not be accessible to screen readers. Another option is to use Make Poverty History’s email form to contact your MP.

For more information:

Here is the text of the Bill, in both English and French.
Open Parliament has all the debate on the Bill in a handy searchable format.
The Council of Canadians with Disabilities has a history of the Bill.
Centre for Equality Rights in Accommodation has details as well.
Red Tent’s details on the Bill.

Imperfections

14 October, 2010bodies, feminism, gender, social attitudesdaily life, disability is a feminist issue, effortless perfection, fibromyalgia, gender, help, medical care, perfectionism, personal, personal stories, rethinking social norms, social attitudes, stereotypes, unexpected obstaclesAnnaham

I am one of those people who often cannot ask for help.

At times, I am so afraid of seeming weak, or whiny, or overly-sensitive, or dependent on other people that I tend to either ignore my own needs until I start flailing around at the last minute in order to not get overwhelmed, or minimize the possibility that some things could be going wrong. I am one of those people who needs to outwardly look like I know what I’m doing and that I have things totally under control — preferably at all times. (Intellectually, I know that this expectation is intensely unrealistic, and can be dangerous; even the most “put-together”-seeming person can be a total wreck in private.)

Part of this is a defense mechanism that I developed around the same time that I started getting made fun of in grade school for my mild cerebral palsy and the limp it caused. Somehow, I figured that if I could be perfect at something — my something being academics — and make it look effortless, other kids would stop making fun of me. This didn’t work out quite the way that I planned; regardless, I still tend to hold onto remnants of this habit.

Part of it is also my own internalization of the cultural ideals that tell people with disabilities that we must always “compensate” for the imperfect status(es) of our bodies or minds, a la the Good Cripple or Supercrip, as well as the cultural messages that tell many women that they must be “perfect” while making it look downright easy, in accordance with the current “ideal” feminine role. A great number of women are told, in ways subtle and not, that we must try to “have it all,” and do it without a drop of sweat showing. We must look good all of the time, we must wear clothes that are “flattering”, we must keep a figure that approximates whatever sort of beauty standards happen to be “in.” We must take care of others’ needs and feelings and make this our number one priority, and think about ourselves last (if at all). We must project an outward appearance of cheeriness, strength, or deference, no matter how we might actually feel. If we cannot do most or all of these things, we have failed. And when this loaded set of expectations intersects with the PWD-compensating-for-disability trope, look the hell out.

These are just a few examples, of course, and these expectations shift in various ways depending upon race, class, ability status, sexuality, gender identification, education, and a host of other factors that are often derided as being remnants of “identity politics.” Identity and its politics, however, still continue to matter.

Here’s where I am going with all of this: For the past few weeks, I have been dealing with newer and more unpleasant fibro symptoms that are starting to affect my day-to-day life. At first, I thought these symptoms were just the result of a bad day, and then a bad week, bad month, et cetera (you can probably guess as to where this leads). I wanted to believe that these symptoms were not a huge deal, and look like I knew how to deal with them until I made it back to “normal,” however tenuous that position is for me. Now that these new and interesting symptoms have become a bigger deal than I had anticipated, a lightbulb has also gone off in my head: I need to work on letting go of this all-or-nothing, but-I-should-always-have-it-together-even-when-I-don’t-and-do-not-need-help mindset.

Today, I finally made the decision to schedule a doctor’s appointment to get help with my new symptoms.

Acknowledging that I don’t have some things completely “together” and that I (gasp) need medical help with these symptoms may be a tiny first step toward changing the tape loop in my brain that tells me that I am on one side of a binary — that I am either a or b, all or nothing, need help with everything or do not ever. There is a middle ground. Until now, I haven’t been able to acknowledge that.

Let’s Bust Some Myths: Depressed People Are Always Sad or They’re Faking!

13 October, 2010mental health, shamingbingo cards, depression, mental health, myth-busting, myths, stigmaAnna

Last year, after the incredibly scientific method of “looking at Facebook photos”, Manulife Insurance Company decided that Nathalie Blanchard wasn’t really depressed, she was just faking it, and thus cut off her disability-related funding.

Mix up a few details, and Blanchard’s story is a pretty common one. Whenever I talk to people who are currently living with long- or short-term depression, or have lived with it in the past, they tell me the same story: Friends thought they were faking because they managed to get out and have a good time. They laughed at a joke once and everyone decided they were “over” their “funk”. They didn’t act like stereotypes of depressed people, so they must not actually be depressed.

Woe, and all that.

This is what short-term depression was like for me: I spent four months getting up, going to work, doing my job quite well, eating at work, coming home, feeding the cat, lying down on the couch, falling asleep, and waking up to do it all again the next day when the cat bit me to remind me that I had to feed him. I didn’t answer the phone. I didn’t go online. I didn’t eat when I wasn’t at work. I didn’t go into my bedroom. I enjoyed my job, and was often bubbly and vivacious at work, and while everyone outside of my job figured there was something up, everyone I worked with thought I was great fun and having a lovely time.

This is what short-term depression looked like for my friend: She spent a few months being aware of every possible way she could kill herself in a room. She was really angry and yelled at people a lot. She would go for long walks in the dark and wonder if someone would just hit her with a car and be done with it. She cut off most contact with her friends and spent as much time as possible alone. She was told that she should “get over it” – whatever “it” was – because everyone gets “down” sometime and she was just being a drama queen.

This is what short-term depression looked like for another friend of mine: He didn’t feel like doing anything, so he didn’t. His doctor encouraged him to go out with friends, so he went out with friends, and laughed when other people laughed and acted as normal as he could. Sometimes he’d have a really good time, and then he’d feel bad because if he was having a good time, he probably wasn’t depressed, and that meant he was just a horrible person, so he’d go back into his room and not do anything because otherwise he was bad, and then the doctor would encourage him to go out and the cycle would begin anew. But most of the time he just didn’t feel much of anything. People told him he must be getting over everything because otherwise he wouldn’t be getting out.

Depression can be sitting alone in a room being sad or down or feeling empty and alone. But when this is the only thing that people think of when they think of depression, not only are there cases like Blanchard’s, but there is pressure on the person with depression, from friends, family members, co-workers, even themselves, to look “depressed enough”.

This stereotype can also lead to people with depression delaying seeking assistance. When I was depressed, I didn’t think I was really depressed, because I wasn’t sad. I wasn’t crying. I just didn’t want to talk to anyone. At all. Ever again. But I just knew I wasn’t depressed because I didn’t want to die. It took me many months to get any of the help I needed, and many of my friendships were irreparably damaged in the meantime.

This stereotype can also lead to more social isolation for someone with depression. If one needs to “act depressed” in order for people to take depression seriously, that can lead to sitting alone even if sitting alone isn’t what one wants to be doing.

I can’t tell you how people will behave when they’re depressed because, even when depressed, people can and do make all sorts of choices. They may do any of the things I’ve referred to here, or they may do something else entirely. If you think you’re depressed, I encourage you to do what you need to do to get through it, and I hope you find the help you need to recover.

For your reading enjoyment, a “Things People Say To People With Depression” Bingo Card. ~~It looks like it was originally posted by inbar–1423 on Tumblr.~~ The link is to one with the image described.

ETA: Actually, the bingo card was originally created by YouKiddinRight on Livejournal. Thanks for the correction!

Canadians: Participants are needed for a study of cell phone based emergency services.

11 October, 2010signal boostaccessibility, blind, canada, canadian, cell phone, studyAnna

(via email)

Participants are needed for a study of cell phone based emergency services.

Researchers at the Neil Squire Society are conducting a study to look at how 911 emergency calls and emergency disaster alerts on cellular phones can be made more accessible.

The goal of this project is to get input from actual cell phone users on how the next generation of emergency services should be designed to ensure accessibility before they are released. Your feedback will be used to make industry and government aware of the unique needs of the Blind community.

We are currently looking for people who are blind and currently use cellular phones and would be interested in attending a focus group or completing a brief survey.

Eligible participants will have a choice of attending one of the focus groups being held in locations across Canada or answering questions in a survey. The focus groups will typically last 2 hours and consist of 6 to 8 people. There will be a brief presentation and an open question and answer session.

To learn more about this research and your eligibility, please contact:

Neil Squire Society
EMAIL: research@neilsquire.ca
Toll Free Telephone: 1-877-673-4636
Address: Suite 220 -2250 Boundary Rd.
Burnaby, BC V5M 3Z3

Principal Researcher
Dr. Gary Birch, PhD, P.Eng.
Neil Squire Society
Executive Director and Director of Research & Development

Sadly, I cannot answer any questions for you regarding this study.

FWD/Forward

FWD (feminists with disabilities) for a way forward

Yearly Archives: 2010

Someone Get This Rock Off Of My Chest…

Video Post: Rachel

Canadians: Tell Your MP To Vote for C-304

Recommended Reading for 14 October 2010

Let’s Bust Some Myths: Depressed People Are Always Sad or They’re Faking!

Recommended Reading for Wednesday, October 13, 2010

Recommended Reading for October 12, 2010

Canadians: Participants are needed for a study of cell phone based emergency services.