Tag Archives: stigma

Recommended Reading for Wednesday, October 20, 2010

recommended reading, , , , , , , , , , , , , , ,

Good Day, all. It’s been a stressful week at Chez Anna (I’m putting this together at 5 a.m. my time) so forgive me for oversights, please.

Kali at Brilliant Mind, Broken Body: I am not your metaphor

This is something that has bothered me for a long time, and actually led to one of the very few spats between the boyfriend and I (quickly mended, once we both cooled off a bit). I really hate the use of disability-based metaphors. Hate them, hate them, hate them. I believe that they’re part of what makes disability such a fearful, distorted, tragic cloud to people who are able-bodied.

It’s all well and good to say they’re bad, but I think it makes more sense if I actually go through some of the more common disability metaphors so you can see what I mean

DeafMom:Embracing My Deaf Self

My life took an interesting turn at that point. Once the grief subsided and I dried the tears, I entered a new world filled with deaf and hard of hearing people. It wasn’t easy– because I had spent the previous 19 years of my life hiding my hearing aid and feeling quite uncomfortable with anything that reminded me that I was “different.” It took awhile for me to learn American Sign Language and get to the point that I embraced a deaf identity. Once I did, there was an amazing transformation in my life: Yes, I am deaf and gosh-darn-it, that’s perfectly ok.

shiva at Biodiverse Resistance: When Will We Be Paid For The Work We’ve Done?

There are several horrible things here. First, the uncritical use of the term “trainable”, dating from the workhouse-era classification of intellectually impaired people into those who could be “trained” to do “useful” work (often with “training” methods that basically amounted to torture) and those who could not (particularly disturbing coming from a “special education” teacher!). Second, the assumption that her “functioning level” (a heavily loaded and problematic term in itself) will never change throughout her lifetime, and that, despite Brown demonstrably being in reality an adult, her “functioning level” is that of a child, meaning that Masaki buys into the “eternal child” stereotype of learning-disabled people – historically and still used to deny them adult sexualities, adult roles within families, and all the basic rights, freedoms and responsibilities that anyone else is assumed to gain automatically on reaching chronological adulthood – which is perhaps even more disturbing as an attitude held by a teacher whose pupils she considers herself “mentor and so much more” to. Thirdly, the glib “wouldn’t it be nice” comment, which is more patronising “inspirational” crap, making disabled people into ciphers of innocence rather than real, flawed and complex people.

MarfMom: A Call for Posts

A Call for Birth Stories From Women With Disabilities

Whether you knew about your diagnosis ahead of time or not, whether you had a vaginal birth or a c-section, I want to hear your story. Positive birth stories are awesome, but if yours wasn’t what you hoped please feel free to submit it too because I want to keep this blog real and the reality of having a disability is that sometimes our deliveries are complicated. I’m going to leave the term disability open-ended, but I’m basically looking for high-risk pregnancies (or what would have been if you’d known your diagnosis). You don’t need to have a connective tissue disorder.

Anne at Where’s the Benefit: The Damaging Effect of how People Perceive disability benefits

If you are one of society’s more vulnerable members, you will have to fight for everything and wade through reams and reams of red tape. That is the experience that many of us have. And people who become eligible for disability benefits and try to claim them are often completely shocked. Some do not have the energy, emotional strength and/or intellectual capacity to go through all of the form-filling and bureaucracy involved in applying and apppealing.

But so long as the myth persists that it’s simple and easy to apply for disability benefits, people will believe that anyone who says it’s not is making a fuss over nothing, or sticking up for so-called scroungers – and when people become eligible for these benefits and try to apply, they will continue to be absolutely gobsmacked when they find out how difficult it is.

In The News

Canada: The National Post: Bygone Braille. “Advocates blame funding shortages, not enough qualified teachers, and decisions by administrators to deny Braille instruction to children with low vision because of an emphasis on encouraging these students to read print. Educators say this assessment couldn’t be further from the truth and argue that today’s diagnostic tools have honed the art of identifying those who truly require Braille instruction and those who don’t.”

Australia: Australia Misses the Plane on Accessible Tourism. “Based on general population statistics of age acquired disabilities the total expenditure of this group in the travel sector is likely to exceed 22% in ten years time. Not only is this relevant to Australia’s domestic tourism market but the majority of Australia’s inbound tourism is sourced from countries with similar age demographics.”

UK Learning Disability Coalition protests in Birmingham at Government cuts. “The campaigners from Birmingham, many of whom use social care support, held up “Cuts Incident” boards displaying the frontline services which they fear will be affected by the Government’s Budget and Comprehensive Spending Review and subsequent cuts that will be made by local councils.”

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

mental health, shaming, , , , ,

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!

Recommended Reading for Wednesday, October 13, 2010

recommended reading, , , , , , , , ,
Description is below.
Black and white advertising image. On the right is a man standing behind a podium that has US flags, his eyes covered with SLOGAN OBSESSED. On the right is the text: Labels get in the way. Disabilities rarely do. Learn the truth. Think Beyond The Label.com Photo courtesy of Kate in DC.

A few signal-boosting calls to action that people, especially those in the US, may want to participate in.

Penny Reeder at Abled Body: Share your Smart Phone Strife with the FCC

And one other thing, I don’t want to pay any more for my smartphone than anybody who has a Blackberry, Droid, or iPhone. I don’t believe I should have to pay extra for a screen reader, like TALKS or MobileSpeak. I don’t mind paying for apps that maximize my capabilities, like GPS or the Kindle app, because everybody pays for those. But everybody doesn’t pay extra for the opportunity to read what’s on the screen!

When I go to meetings with sighted colleagues, I find they are connected in real-time to their smart phones. Ask them a question like, “What does a First Class stamp cost?” (I can never remember…), or “What should the temperature of a medium-rare burger be? — and they can respond, literally, in seconds! That’s because they can see the screen, so they don’t need spoken output to access the information, giving them immediate access to answers.

There’s more information and how to contact the FCC to discuss your accessibility-related concerns at the post.

Steve Spohn at Abled Gamers: Sony’s new Firmware stops disabled gamers from playing PS3

Mad Catz, makers of many PS3 modded controllers, supplies the circuit boards to Broadened Horizons for several of its accessible controllers. These controllers are responsible for allowing severely disabled gamers with no dexterity or hand movement at all to use their PlayStation 3. Normal OEM controllers require lots of finger movement and hand strength while Broadened Horizons’ controllers allow for little or no movement at all.

Suddenly, and without warning, several of these motor impaired gamers were locked out of their favorite activity.

Steve provides information about how to contact Sony and raise concerns with them directly.

Blog Posts:

Steven M. Schwartz at the Emperor Has No Toque: “A Demographic of Silence Living With Mental Health Stigma”

Silence when it comes to mental illness is a killer, a killer of self esteem, hope, and emotional safety. Silence mixed with stigma is painful and is a cause for those living with Mental Illness to separate ourselves from the world around us. Rarely does a person living with mental illness speak out to identify with or protect others traveling down our own road, because the fear of being stigmatized by others is a constant shroud that covers us. We have all faces stigma, either self imposed or from a external source, both feed each other and keep us in so many ways from reaching our potential.

Holy Gray at Don’t Call Me Sybil: Speaking of Crazy

One thing that struck me when reading RMJ’s post was that, like the mythology that surrounds Dissociative Identity Disorder has roots in the truth, most of those negative connotations of the word “crazy” spring from reality, however distant. In light of that, I understand why Natasha Tracy and others choose to embrace the word. Why not call a duck a duck? The problem as I see it is that while most of us reserve the word “duck” exclusively for referencing actual ducks, we don’t use “crazy” in the same way. And it doesn’t matter whether it’s used in positive or negative ways. If, from this day forward, we all used that word only to mean (1) stunningly awesome, or (2) mentally ill, it would still irk me. Because if your boyfriend is crazy hot, DID isn’t crazy. And if DID is crazy, your boyfriend isn’t crazy hot.

Laura Hershey at Life Support: My Wheelchair, My Body, Myself

For that’s exactly what this felt like to me – an assault. It was a direct, physical affront to my person. This man wasn’t just messing with some piece of equipment. He was interfering with my mobility, my power to position myself, to go where I want. My wheelchair is a part of my means of being in the world. In other words, it was part of me that he grabbed – my wheelchair, my body, myself.

Would anyone else recognize this? If I had tried to charge him with assault, would the legal system have supported me? Were other passengers aware of the depth of this violation? Or did they accept his statement that he was “helping” me?

Writer in a Wheelchair on Disability Voices: Virginia Ironside’s Comments on Sunday Morning Live

Her take is that it’s a moral thing and that it’s to be done to prevent suffering. She does then go on to say that there are millions of disabled people who live “Marvellous” lives but there are also thousands of millions who are suffering and not live no kind of life.

She’d do it to a child she really loved and she doesn’t know any mother wouldn’t. I personally am very glad that according to Ms Ironside’s views my own mother can’t love me and must be a terrible mother.

WHEELIE cATHOLIC: Independent Living: Planning Pet Care

I do have to change my cat’s diet and routine a bit. One thing that is always time intensive is when new tasks get added to the schedule around here. I have a limited number of care hours. Anything that goes over those hours gets added to what I have to do with adaptive devices. That can drain energy I need to work.

So I start by trying to figure out ways to do the new tasks using assistive devices. If I can’t or if the energy it will take won’t work, I add it to what others do and have to pick out something they are doing that I can take on. There are only so many care hours and since I also use them also to help me get my work done, it takes a lot of planning and resourcefulness on everyone’s part.

Recommended Reading for November 30

recommended reading, , , , , , ,

How to Survive Thanksgiving When You’re In Eating Disorder Recovery [I should have posted this earlier, but there are major food-related holidays coming up in December.]

During the holiday season, support from family and friends can significantly impact an individual’s ability to effectively handle these stressful situations. For those supporting someone with an eating disorder through the holidays, the Eating Recovery Center offers these suggestions:

Language, Stigmatisation, and Mental Distress

I recall from some years ago when a mental health survivor of the system told me about a meeting he had with script writers working on a soap opera. They were trying to create a storyline regarding a character and his psychotic breakdown culminating in him running amok brandishing a knife. The script writers were happy with the storyline and were engaging in a discussion with mental health users to see whether they had anything to add. The guy telling me the story said the other people he was sitting with just sat there totally gob smacked. One of them explained to the script writers that the current storyline as it stood only reinforced stereotypes and stigma (mental distress=psycho=knife wielding maniac).

After much patient explaining the penny eventually dropped, wasn’t so much an eureka moment when that happened. They changed the storyline, taking out the needless psychodrama for psychodrama sake. Wasn’t perfect, it still referred to stereotypes and your average psych textbook but at least they took out the knife wielding moment. My own view and I said it to the guy who told me the story is that this exposes lazy script writing as opposed to researching the realities of mental distress.

Disability & Virtual Worlds: Universal Life

The island was designed visually and experientially to offer the best benefit to users with disabilities, fully available to adaptive services and developed in accordance with Universal Design principles. The island contains the following features: wide ramps scalable for avatars in wheelchairs; bright high-contrast signage more easily trackable by users with visual impairments; smoothly landscaped walkways to accommodate many types of users; and training offered in small sets to decrease fatigue.

Testing was performed in stages, with the first challenge being how to best present signage. Signs needed to be readable by the default camera view, which is angled downward at roughly 15 degrees from eye level, so all signs in the island’s Orientation Centre were compensated for the height of avatars using wheelchairs. The standard view in Second life includes the avatar in the frame, so signs were placed high off the ground. Paths and walkways were designed with as few stairways as possible, with no bumps that would make an avatar trip while walking. The surrounding land was modelled to meet the paths as closely as possible.

In the news:
Man builds stair climbing wheelchair

“It used to take us a good half an hour to walk downstairs from our fifth floor apartment to the ground floor after her injury,” he said.

“I realised that what she needed was an electric wheelchair that could go up and downstairs but such a thing didn’t exist.”

So, despite a complete lack of mechanical knowledge, Li sold his apartment for £44,000 to fund the project.

The wheelchair as a weapon

And though the 38-year-old father of two quickly learned sporting activities such as hand cycling and sit skiing, it wasn’t until he took a new self-defence class for wheelchair-users that he began to feel at ease with his new paralyzed status.

“When you become a paraplegic and are in a chair, physically your world changes. You’re looking up all of a sudden,” he says. “(The class) was a great way for me to get to know my body again, to get comfortable in the chair and to build up a sense of confidence.”

I don’t have a “real” mental health condition, I’m just weak, and other bad self-talk

blaming, mental health, social attitudes, , , ,

One of the hardest things for me in dealing with my mental health condition is my very strong theory that everyone else is having exactly the same problems that I am, but they’re just 8 million times better at dealing with them, and hiding them from everyone else. And thus, I don’t talk about my mental health, much, because everyone else is obviously coping with the same thing, and I’m just a big whiner who can’t cope and fails at everything and is useless and should just run away and everyone will be better and– stop.

For extra special bonus points, my mental health condition will also remind me that if I just try hard enough, if I just do more things, I will prove that I’m coping Just Fine and everyone will love me and why would anyone want to talk to someone who isn’t doing all this extra stuff and if I just could cope the way everyone else did I wouldn’t have these problems and I would just be good enough and not have to do all these things and– stop.

It’s a fun game my brain chemistry plays with me and part of the reason it’s so successful is because of how mental health conditions are portrayed in popular culture.

I don’t talk about how my brain is working this week (this month, this semester) because I’m afraid. I’ve already experienced backlash related to my mental health condition online, and I fear “coming out” to my professors, my classmates, or the people on any of the six committees I’m on this semester because suddenly I’ll be weak. I’ll be the scary girl who might snap. Maybe they’ll ask about my experiences being detained by hospital authorities for “my own good”. Maybe they’ll start to doubt the validity of my research, or dismiss my opinions, or stop telling me about meetings, or start talking about me behind my back, whispering and then they’ll be making fun of me all the time and it will be just like high school and I am not sure I can cope with that again and I don’t want to go to the hospital and I don’t want to go to the doctor and tell them I’m not coping because they’ll lock me away and– stop.

It took me a decade of this constant self-talk before someone told me it wasn’t “normal”, and that I could get help to deal with it. And despite having gotten effective help in the past, despite increasingly being able to keep myself focused and on task and not falling apart all over the place, I’m still deathly afraid of talking to people about mental health concerns. I’m still afraid, today, right now, to go to my doctor’s appointment because doesn’t everyone have their heart pounding in their ears during class? Isn’t everyone convinced their profs all hate them? Doesn’t everyone think that if they just stretch themselves a little thinner, they’ll be good enough?

The only reason I resisted getting help for so long, when I could have been getting help as soon as I started having these symptoms, was because Mental Illness has a huge social stigma attached to it. People like me, who “just” have such bad self-talk that they harm themselves in ways that aren’t easily noticed (six committees? plus the writing for the paper? Plus the FWD/Forward blog duties? Not to mention trying to finish the MA in a year? With a husband who’s recovering from cancer surgery and has a disability? And trying to make sure everyone eats healthy, and trying to keep the housework up? Self, what are you doing? Besides doing it all wrong, of course.) can end up not seeking help because I’m not crazy, I’m just stupid and lazy. We’re lead to believe “real” mental health conditions are like t.v. version of schizophrenia and movie versions of OCD.

I had a great ending planned to this, that would invite people to talk about how pop cultural portrayals of mental health concerns affected them. I also wanted to write about how I don’t want to put a stigma on schizophrenia and OCD, but on the way these conditions are portrayed in the media, but if I keep writing, it’s going to be another way to not go to the doctor and get a needed prescription for anti-anxiety medication. Last year I didn’t go to the doctor until I thought I was having a heart attack and could barely breath.

But it’s all in my head, right? People like me, we’re just weak.

Recommended Reading for November 12

recommended reading, , , , , , , , , , , , , ,

Private Practice Takes a Bold Stance against Decent Behaviour

There’s a new doctor at Naomi’s practice, Dr. Fife, a genetic engineer who uses a wheelchair who pressures Naomi into agreeing to select for an embryo for two patients with dwarfism to allow them to created a baby who also has dwarfism. Naomi is reluctant but agrees until she learns that these embryos will also give the future baby a 40% chance of developing some kind of cancer (which Lauredhel over on FWD points out, is the baseline cancer risk for the US population).

18th Down Under Feminist Carnival

This Carnival has an optional caring theme, thanks to Australian Carers’ Week (which was October 18 to October 24). The theme for this year was “Anyone, Anytime, Across Australia”, which I modified to “Anyone, Anytime” for the purposes of the DUFC.

Denmark Strips Away Right To Privacy from Blind Voters

On Wednesday I read that one of my blind friend’s in Utah just experience voting by himself for the first time thanks to his voting machine having built in text to speech. On that same day, I also read that the blind in Denmark not only don’t get to vote by themselves, they have to have a council member present when they’re voting. This rule was supposedly implemented to make sure that the sighted helper wasn’t pressuring the blind voter to vote in a particular way, but what it really does is just strip that voter of their right to privacy.

On being “Crazy”

Crazy is something altogether different. Crazy is delusion, psychosis, mania, schizophrenia. Insanity, in the depths of society’s psyche, is jabbering in tongues rocking back and forth in a padded room. It can’t be trusted. It is the serial killer, the mother who kills her children, the man who laughs while committing the most vile crimes – this is what “crazy” conjures up in the minds of the general public.

This terror, this nightmare looming in the dark places of our collective consciousness is harmful. Incredibly so. It means that people who are not neurotypical are stuck with the paradoxical choice of lying or being mistrusted. Perhaps more importantly, it makes us less likely to seek help when it is needed. It took me years to admit, even to myself, that my brain was fundamentally different than most. Because I didn’t want to be crazy.

In the news:
Vatican post office issues stamps with raised dots to honour inventor of Braille system

The Vatican post office says it has issued its first Braille stamps to commemorate the 200th anniversary of the birth of Louis Braille, the French creator of the writing and reading system for the blind.

The stamps feature a portrait of Braille and his system’s raised dots that spell out Braille, Vatican City State and the price.

Don’t forget, we’re also doing some guest blogging at Bitch Magazine! Check out meloukhia’s introductory post about disability! (Yes, I do write up recommended reading in advance.)