Yearly Archives: 2010

Finally, a Dear Prudence column that isn’t rage-inducing!

In the most recent Dear Prudence live chat on Slate, a reader asked the following:

Negativity: I have had a bad couple of years—intermittent employment,
moved twice, lost a sibling. I’m a pretty positive person, but I’m
having trouble keeping my chin up, since that mainly results in me
taking it on the chin.

I have a friend who asked if I was feeling a little down, and when I
admitted it (something that is hard for me), she basically said it was
my fault, and my negative energy was attracting negative events. I
would not find happiness or get my old lucky life back until I could
learn to accept what fate was trying to teach me.

I don’t know what’s worse, her idea of comfort or the idea that she’s
right. She didn’t used to be crazy, but this New Age stuff has been
her reaction to being unemployed and living on credit cards. What
should I have said?

I could do without the mental-illness shaming (“She didn’t used to be crazy…”), but does this sound familiar to anyone who’s had to endure similar “well-meaning” advice from people who think you can — and should — just “buck up?” And oh my god, SCARY NEGATIVE ENERGY! I’ve covered the fallacies of The Secret and related pablum before here on FWD, so let’s take a look at advice columnist Emily Yoffe’s response:

Emily Yoffe: The Secret and other garbage of that ilk suggests people
abandon friends with problems so that they don’t get “infected” by
their negativity. So you could have said you understand her new set of
beliefs mean you two have to keep your distance and that you wish her
all the best.

I actually think the disease metaphor works well in showing just how ridiculous the notion of an “infection” of negative energy really is. To sum up: The flu is something you can get “infected” with, and it’s not fun. As for negative “energy,”  — if “positive thinking” works so well in combatting anything that’s not sunshine and rainbows and unicorns pooping glitter, why do positive thinkers and Secret devotees insist on dumping people who don’t fit their exact super happy worldview? Either the super POSITIVITY!!11 worldview is incredibly fragile and therefore must never be questioned, or there’s some major cognitive dissonance going on — perhaps both?

Glee: Poster Children for DisabilityFail

You saw last week’s Glee promotional poster, posted here by s. e. smith. In that poster, Sue the cheerleading coach sprays spray paint across the Glee club – hitting most of the singers in the chest or abdomen, but spraying Artie, who uses a wheelchair, across the eyes.

Here’s the latest:

glee poster with singers jumping for joy against a red background. Artie, instead of jumping, is falling out of his wheelchair.

Look at those singers! They’re so happy! They’re jumping for joy! They’re smiling! Life is good! Well, except for Puck, who chooses to stand with his arms crossed, looking cool. That’s his version of happy. And, oh, except for Artie. Who can’t jump, because, LOL, he’s totally confined to a wheelchair, y’see. So he’s falling out of his chair. Looking terrified. What fun!

Worst of all? Fox loved this branding so much – they made three versions.

Continue reading Glee: Poster Children for DisabilityFail

Chatterday! Open Thread.

This is our weekly Chatterday! open thread. Use this open thread to talk amongst yourselves: feel free to share a link, have a vent, or spread some joy.

What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world? Got any questions for your fellow FWD commenters?

Today’s chatterday backcloth, possibly the cutest baby sloth alive, comes via The Daily Squee.

baby golden sloth lying on its back reaching out as if for a hug

Recommended Reading for April 2, 2010

A metal plate covered in braille

Accessible Information is Understandable

You can present information in Braille, large print, Sign Language, or easy read, but it will still be useless if it cannot be understood.

Once again we are talking about clear and straightforward communication, familiar language, jargon free text and information that is well structured and easy to follow. This is true whether the information is presented in a web site that has clearly understandable navigation and other interactions such as forms, or in any other format.

An Education

I’m worried about dropping out of school at some point. And part of that is because I like education. Which is a valid reason to feel worry about not being able to complete it. But part of that, part of it is because of the enormous social pressure to succeed in this environment. Part of it is the society telling me that if I can’t handle university, the problem is with me not wanting it hard enough, or not trying hard enough. The problem is me, not the system that isn’t set up to accommodate more than one (fairly specific) type of learning. And it’s really hard not to internalize those messages, even if you know about the problems with them. It’s hard not to buy into something you see everywhere.

Cybernetic Space Princess on Mars.

Because I am very functional, and because the standard image of “someone with OCD” is Adrian Monk or Hannelore, I do occasionally have to deal with people assuming I’m exaggerating. I don’t compulsively wash my hands or clean my kitchen, I’m definitely not a germaphore, and if I re-type books completely between drafts, well, that’s just a quirk. But obsession and compulsion both take many forms, and while I have found peace with mine, and consider them a vital part of who I am, that doesn’t mean they don’t exist. (Why I would joke about having something that is considered a mental illness, I don’t know.)

Remember that just because someone is a functional, relatively normal-seeming human being, that doesn’t mean they’re wired the way that you are. I have to remind myself that not everybody wants their day broken down into fifteen-minute increments, because for me, that is the norm. The human mind is an amazing thing, full of possibilities, and each of us expresses them differently. I am a cybernetic space princess from Mars, and that’s not a choice I made; that’s the way I was made. I can get an address on Earth, but Mars will always be my home.

The next Disability Carnival is at River of Jordan, and the theme is Balance.

In the news (just headlines today, all from the US):
Short Bursts of Activity Ease Fibromyalgia

Grieving Kettleman City mothers tackle a toxic waste dump – Each had miscarried or given birth to a child with birth defects. Their pain gave them strength to fight for justice.

A Pennsylvania government study commission has proposed legal reforms to curtail power-of-attorney abuses that have cheated the elderly, the disabled and their heirs.

Retired couples may need $250k for health care

No, It’s Not As Easy As You Think

When I talk to people in the United States about disability and the need for accommodations, I am usually met with a bit of bewilderment. “You mean there’s still more work to be done on accommodations? I thought all that had been taken care of.” These are people who are used to seeing wheelchair ramps at the entrance to government buildings, used to seeing the hand switch for wheelchair users to open automatic doors, used to seeing the braille at the ATMs. Given their observations of those existing accommodations and a minimal awareness of the Americans with Disabilities Act (ADA) that mandates those accommodations, they assume that there’s been a consensus on the need to provide accommodations, a law mandating those agreed-on accommodations, and general compliance with that law.

As we well know, that is far from the truth. None of those assumptions are as true or are interpreted as broadly as people tend to assume. There is no general consensus on the need to provide accommodations for the broad range of disabilities that exist – there is general agreement that people who use wheelchairs should have access to government buildings, but there is nothing even close to general agreement on how to accommodate people with depression or even whether depression is a disability “deserving” of accommodation. The US does have a law mandating accommodations – but there are not equivalents in every country and there are significant holes in the ADA itself, often putting the burden of requesting accommodations and demonstrating a need for them on the person with a disability. Finally, the idea that agencies and businesses affirmatively comply with the ADA, obviating the need for enforcement, is just patently false.

A recent federal court decision in underlines all of these realities. In 2005, the American Council of the Blind filed a lawsuit against the Social Security Administration (SSA) “to compel SSA to provide alternative formats of communication that would enable [people with visual impairments] to have more equal access to participate in SSA programs.” (Court documents and information available through DREDEF’s site.) It took until 2009 for a court to agree and order SSA that it is required to issue notices to people with visual impairments in a format they can read – in Braille, large print, e-mail that can be read by a screen reader, computer disks, or audiotape recordings.

This lawsuit undercuts each of the assumptions above. First, there is clearly not consensus on providing accommodations, even to what would be considered a relatively “easy” impairment to accommodate – it is easy to anticipate the functional difficulties that a person with a visual impairment would encounter when presented with a written notice. A lot of these people – 250,000 of them – are getting benefits from SSA specifically because they have a visual impairment, so they’ve given SSA extensive documentation of those impairments and information on the functional limitations caused by the impairments. A much larger group – about 3 million in total – get retirement benefits from SSA. At any rate, SSA knows that these people have visual impairments and has detailed information on how those impairments affect them. And it still has not provided accommodations.

But what about the second assumption – there’s the ADA, right? It turns out that the SSA is not subject to the requirements of the ADA! The ADA applies only to state and local governments and agencies that receive federal funding – it does not apply to federal agencies such as SSA. (Raise your hand if you knew that – few people do!) The only disability rights law that applies is a precursor to the ADA, Section 504 of the Rehabilitation Act of 1973. While the requirements regarding accommodations from government agencies are largely similar, the Rehabilitation Act does provide limited rights in comparison to the ADA.

It’s also very clear that the SSA – despite being the primary provider of cash and medical benefits for people with disabilities – did not consider that it had any obligation to provide accommodations. When individual plaintiffs with visual disabilities requested that they be given notices in alternative formats, they were simply told that no other formats were available. This included notices to which people must respond within 10 days or risk losing their benefits. Even when they were initially sued in 2005, SSA argued that the Rehabilitation Act “did not even apply” to the issue of notices to people with visual impairments. Similarly, SSA did not consider itself obligated to let benefits recipients know that they had accommodation rights under the Rehabilitation Act and laying out a process for them to request and enforce those rights.

The result of the litigation is that SSA is now required to develop a procedure to 1) notify benefits recipients of their rights to accommodations for visual impairments  and 2) provide notices in alternative formats when recipients request them. Which is certainly a good thing – but one that I would simply expect from a government agency that administers disability benefits, rather than having to be ordered by a federal court after 5 years of litigation. And if accommodations that are this common sense, from a federal agency set up to deal with people with disabilities, are so hard to obtain and enforce, that demonstrates how very far we are from a society where PWDs are meaningfully accommodated.

Recommended Reading for April 1, 2010

A painting done showing hands in the Signs for A-S-L

Shit I Hate: Models as the Face of ED Survivorhood

Let me be clear – I do not hate models who are suffering from eating disorders, have come out as ED sufferers or survivors, or who have turned to advocate for other sufferers. That is a good thing to do, it comes from a place of kindness and intelligence, and it is an admirable use of privilege in order to help others. Model moral behavior, you might even say. However, I do not like the way the models’ narrative seems to be the dominant or even only story that is recognized in our wider media as the neatly-packaged beginning-to-end textbook case of an eating disorder. I’m focusing on women here because women’s bodies are, overwhelmingly, the target of these narratives. I’m also focusing on those women who have made it to tell their stories – though we know many will not make it, and we do not forget them. I’m talking specifically about media portrayal of ED survivors.

Nursing at the Keyboard [NAK]: How to give boob and type too

When my kids were little, they nursed a lot. A LOT. They were both evening cluster feeders, which meant that my options for the evening were to sit on the couch and watch TV or read a book, or I could NAK. Nursing at the keyboard was often the best choice for me. Television was sometimes too loud and the Internet was just too compelling. But as someone who has mastered the art of typing, trying to type messages one-handed while nursing a baby quickly got old. Something had to be done about it.

So I worked out a system.

“Let’s Go Talk to Patio Furniture”

One day Wanda refused to assist me in the bathroom and gave no explanation why. I was in class (college) so it was not like I had my mom there and none of my friends knew how to transfer me (why would they?). So there I was at lunch, needing to pee but my aide refusing. So I had to ask one of my friends. My aide wouldn’t even help explain how to transfer me or do anything else. I had to eyespell how to do everything to my poor friend.

Dear Michael & Brian, You Were Lied To

At i09, M. Night Shylaman answers questions about The Last Airbender Live Action Move (aka, that Racist Mess). And he shows not only that he’s the South Asian equivalent of an Uncle Tom; he shows that he doesn’t get the optimism and hope of Avatar – that it wasn’t that it started young and skewed older, but that it has a foundation of joy and hope and friendship that carries all through; just as it has a foundation of being non-white fantasy.

Remember the interview that’s now unfortunately on the official animated series DVD? About how he ‘got’ it all?

M. Night Shylaman lied.

Judge Quentin D Corley

Another disability history image thanks to the Flickr Commons project. This one is from the Library of Congress’s set from the George Grantham Bain Collection, news photos from 1910-1915. Here we see Judge Quentin D. Corley (as the title suggests), driving a very early model car with steering wheel adaptations for his prosthetic left hand; the right sleeve of his jacket appears to be empty. Corley looks to be a young man wearing a white summer hat.

Life is Too Short

Brandy, a large yellow Labrador worked faithfully by her partners side for 11 years. She was the first service dog for people with physical disabilities I ever met and I still remember meeting her and her human on while we were stuck on a plane having electrical difficulties on a tarmac in a plane going nowhere anytime soon. As the crew allowed other passenger to exit to plane if they wish for a bit, this gentleman and I bot made the decision to sit tight because it was too much of a hassle to get of the plane and risk not getting back in time.

Does Diagnosis Matter?

In the recovery movement, which is the zeitgeist in the delivery of mental health services at this time, we are supposed to look past someone’s diagnosis. I am not “a bipolar” or “depressive” or “schizophrenic.” I have been diagnosed with such, but the relevance of that diagnosis is highly suspect. Because aren’t I just Liz? Liz who is addicted to Dunkin Donuts hazelnut coffee, Liz who likes chihuahuas in sweaters, Liz who tries to do gluteal exercises to increase her butt’s circumference — without success. So many things make up my Liz-ness, right? So who cares what some doctor said?

Generally speaking, I agree with this approach. For many years we have been labelling people in an attempt to treat them, and the results aren’t exactly stellar. So why not change protocols, DSM by damned?

This Situation Is Not Unique DISCUSSES SEXUAL ASSAULT

When I was in middle school, around the same age as this little girl is, and freshly diagnosed with Aspergers, I was also a victim of sexual harassment/assault, repeatedly, by my classmates. Innapropriate touching, lewd comments about my body, and bragging about taking advantage of me because I was too “retarded” to understand what was going on. This continued for three years uninterrupted, and only slightly lessened when I entered high school. Nobody did anything, not teachers, nor my parents, nor the administrative staff at the private school I attended. Whether it was due to them being oblivious to the bullying, whether they thought that because I was bigger than the other students that I should “take care of myself”, or because the students who tormented me were wealthy and came from good families and I didn’t, I’ll never know. I suffered in silence. In fact, until today, I’ve never talked candidly about the fact that I was sexually assaulted. I simply labelled it “bullying”.

Making “Invisible Women” even more invisible

One the arguments about why it is difficult to center the voices of women with disabilities seems to be that there just aren’t that many of us writing. Or maybe we don’t write in an easy-to-understand way. Or maybe we don’t write in a way that’s clear to people are currently non-disabled. Or maybe there just aren’t that many of us writing, so finding a good example of writing by women with disabilities to highlight is just very difficult.

Or so I’ve been told.

Certainly it’s something we at FWD have run into in argument after discussion. Reaching out to those with disability and inviting them to speak for themselves is hard. Our response has been, of course, to start this blog, but also to try and highlight the voices and experiences of others. We’ve had guest posters, of course, and have a weekday “recommended reading” selections that seeks out posts about disability written mostly by people with disabilities in their own voices. We have a lengthy blog roll that is just a tiny sliver of the disability-focused blogosphere. And by no means are any of these comprehensive. Every year I read Blog Against Disablism Day and am taken aback by the depth and breadth and variety of posts on the topic. We write, we talk, we sing, we sign, we compose poetry, we dance, and we express ourselves, all there in our own voices.

Heck, you’re all probably aware of some of the important rallying-cries of people with disabilities. “Nothing about us without us“, say, or “Autism Speaks doesn’t speak for me“.

I mention all this because I was surprised to read “Invisible Women” at the Human Rights Watch blog, originally published at the Huffington Post. It was written by Joseph Amon, who is the director of the health division at Human Rights Watch.

It’s an interesting article, and I do recommend reading it all. Here is the part of it that made me think, today, of the number of times people with disabilities are rendered invisible by social justice movements:

Women with disabilities are made further invisible because few statistics are collected that describe their numbers, and decision-making bodies in both the public and private sectors rarely include women with disabilities or consult with them. This makes it difficult to identify the key challenges women with disabilities face, or to advocate for targeted programs to address those challenges. Even when data about disability are collected, these figures are often not disaggregated by gender. Without a place at the table, women with disabilities cannot make their voices heard or their concerns addressed.

Until recently, women and girls with disabilities have largely been invisible even within the disability movement and women’s movement. The issues facing women with disabilities have not been priorities for either community. But that is starting to change.

You know what also renders us invisible?

Not allowing or inviting us to speak about our own oppression.

So many opportunities to allow women with disabilities – these invisible women – to talk about their experiences.

So many opportunities squandered.

Related: My experience at a disability-focused all-candidate’s debate during the provincial elections where the organizers refused to allow people with disabilities to ask questions because it would be “too difficult” for the candidates. The candidates were there to highlight their Party’s concerns and plans for people with disabilities.

Happy Cesar Chavez Day!

Here in California, today is an official State holiday to celebrate the life and work of Cesar Chavez. Chavez worked to promote and enforce the civil rights of farm workers and, with Dolores Huerta, was cofounder of the United Farm Workers of America, or UFW – still one of the United States’ two major union umbrellas. While his work is usually viewed through the lens of organizing for Latinos, there is a significant disability component to his work.

Migrant farm workers are affected by a number of intersecting a complex factors which negatively affect their health and put them at risk of becoming permanently disabled through their work. They are likely to be exposed to harmful chemicals or dangerous work situations and because they often live on the farm under the control of the farm owner, they have little access to health care. This is all complicated by the immigration status – or lack of – of the workers. Here’s a brief overview of the occupational hazards, from the National Center for Farmworker Health:

The agriculture industry is one of the most dangerous occupations in the United States. While farmworkers face workplace hazards similar to those found in other industrial settings, such as working with heavy machinery and hard physical labor, they also face unique occupational hazards including pesticide exposure, skin disorders, infectious diseases, lung problems, hearing and vision disorders, and strained muscles and bones. Lack of access to quality medical care makes these risks even greater for the three million migrant and seasonal farmworkers who work in the fields every year.

In 2007, for every 100,000 agricultural workers in the U.S. there were 25.7 occupational deaths in agriculture. This compares to an average rate of 3.7 deaths for every 100,000 workers in all other industries during this same year. The Centers for Disease Control and Prevention label agriculture the most dangerous industry for young workers in the United States, accounting for 42 percent of all work-related fatalities of young workers between 1992 and 2000. Fifty percent of these victims were younger than 15 years old.

During their daily work, farmworkers are often exposed to pesticides. A 2002 study examined take-home organophosphorus pesticide exposure among agricultural workers and found pesticides in dust samples from 85% of farmworkers’ homes and 87% of farmworkers had pesticides in dust samples in their vehicles. In addition, 88% of farmworker children had organophosphate metabolites in their urine.

Infectious diseases among the farmworker population are caused by poor sanitation and crowded conditions at work and housing sites, including inadequate washing and drinking water. Farmworkers are six times more likely to develop tuberculosis when compared with other workers, and rates of positive TB results between 17% and 50% have been reported throughout the United States.

Because farm labor consists of constant bending, twisting, carrying heavy items, and repetitive motions during long work hours, farmworkers often experience musculoskeletal injuries. Furthermore, workers are often paid piece-rate, which provides an incentive to work at high speed and to skip recommended breaks. From 1999 to 2004, almost 20 percent of farmworkers reported musculoskeletal injuries.

Another complicating factor is the prevalence of child labor on these farms. It is obviously difficult to quantify this phenomenon, but worldwide, approximately 132 million kids between the ages of 5 and 14 work in agriculture. In the United States, somewhere between 300,000 and 800,000 children do agricultural work, sometimes working 12 or even 14 hour days. Environmental pollutants like pesticides have greater effects on children and their growing bodies are often at greater risk of harm from musculoskeletal and other injuries.

The punishing nature of this work is well known and acknowledged by government agencies. The Social Security Administration, which provides cash benefits and medical coverage to individuals it determines are “permanently disabled,” has a special category for “the worn-out worker.” This is a provision specifically for someone with less than a 6th grade education who, after 35+ years of arduous manual labor, can no longer return to that previous employment. The most common example of someone who fits this category is a migrant farm worker – someone who worked in orange orchards, climbing ladders, carrying heavy boxes of fruit, whose body has simply broken down and can no longer sustain that arduous labor.

There are three million workers currently in the fields, including a significant number of children, for whom this is the expected outcome – if they manage to sustain their labor for thirty five years. Cesar Chavez fought for those people and fought to protect them from outcomes and conditions that were, in his time, even worse and more damaging than what I’ve described above. We now must continue his fight.

Si Se Puede!

Recommended Reading for March 31, 2010

A wheelchair symbol lit up in florescent light

Having an Answer:

Yes ladies and gentleman there are people in the world of rehab and fitness who actually give a hoot about you the person not just you the underlying diagnosis. You just have to find the right people.

And when you do, life just rocks a little bit more.

I hate to write another letter. I am tired of writing letters

If one were a wheelchair user who regularly interacted with a bus drive that demonstrated a lot of irritation at having to work with wheelchair users to get them strapped in to a wheelchair spot, one could likely tell. People are never as subtle as they think they are, especially not in their irritation.

Trans Lit – searching for our reflections

And I think the thing that does bind different trans* identities together – somehow feeling outside one’s assigned gender roles – could allow those interested in trans fiction to enjoy a wide variety of trans protagonists, even if not every protagonist matches every reader’s lived experience.

When all you have is a hammer

Let’s get two really simple things straight.

Overload is not anxiety.

Shutdown is not dissociation.

Overload may cause anxiety sometimes for some people. But it is an experience that is at the heart of things… sensory, perceptual, cognitive, whatever you want to call it. But while emotions can be involved, it really isn’t at the core an emotional experience. Get rid of the emotions and overload and shutdown will still happen for most people.

I think there are two main things at the root of this confusion:

Abilities & Burnout

Besides the basic fluctuation–and serious differences in ability between different areas, including what gets described as dyscalculia–I kept running into problems from this. Especially when I hit adolescence, then later when I hit college. (Then I burned out. Repeatedly. Which made things that much better.) Heck, the gaps and difficulties were obvious enough by the time I was 8 or 9 that one great-aunt, an educator whom I rarely even saw, brought me a huge stack of books on coping while “gifted”. I appreciate this gesture much more now–especially since she was the main person not pretending that I was not having problems coping–but the books didn’t help.

In my particular case, the unexpected skills/ability to show skills pattern got some really nasty interpretations–especially in school–because I was good at testing. (Less so, these days.) The lowest my IQ tested out was 185. I am not mentioning this out of some weird sense of supremacy, but to point out the serious disconnect between some other people’s expectations and what I was ever able to do. It’s apparently easy to project like mad, and build a mental construct of “someone that smart” based on assumptions that you, personally, would never run into a problem that you couldn’t think your way around if sufficiently motivated to do so, were you “that smart”. It’s not much of a leap to then substitute that mental construct for the real human being in front of you, and make up all kinds of weird explanations for why the two do not match. At all.*

Misconceptions about Autistic Abilities & Intelligence

Another misconception involves the idea that a high test score always indicates across-the-board ability. In truth, a single skill might enable a person to do well on a broad range of tasks at a certain age, when that same skill will not help a person as they get older. Amanda mentions in the comments that her IQ score dropped by half between the ages of five and 22. She attributes this to her hyperlexia, which enabled her to score in the 160s at age five, but wasn’t helping her anymore as an adult. Interest in and, hence, familiarity with the test items would also have an effect. For instance, I’m not sure I would still score as high on calculus as I did in childhood, because I had a special interest with it back then and haven’t in many years.

In the news:

USA: Disabled Immigration Detainees Face Deportation

The detainees, mostly apprehended in New York and other Northeastern cities, some right from mental hospitals, have often been moved to Texas without medication or medical records, far from relatives and mental health workers who know their histories. Their mental incompetence is routinely ignored by immigration judges and deportation officers, who are under pressure to handle rising caseloads and meet government quotas.

Marlee Matlin launches YouTube Channel

Marlee Matlin had an idea for a reality show that she hoped would bring some insight into the lives and struggles of deaf people and how they cope. But while reality TV has brought us wife swappers, party girls, aging rock stars and dieting divas, apparently no one was ready for something that real.

So instead, the hearing-impaired actress who won an Academy Award as lead actress for her role in “Children of a Lesser God,” took her show “My Deaf Family” to Google’s YouTube. You can watch it here.

“Deaf and hard of hearing people make up one of the largest minority groups,” she said in an interview through her interpreter, Jack Jason, “and yet there has never been a show, a reality documentary series that features what life is like for them.” Matlin financed the show, which tells the story of a family in Fremont, Calif. All the family members are deaf, except for the oldest son, Jared, and the youngest, Elijah. It is narrated by Jared.

Matlin shopped her pilot to network executives, who purported to “love it.” But none would take the plunge.

Recommended Reading for March 30, 2010

The Summer of Nadia

I remember the doctor talking about my diagnosis that day in the summer of Nadia, and what would likely happen. Terms like “swan-necked fingers” and “hammer toes” were thrown around. I remember he never looked at me as he spoke, though he used my various body parts to demonstrate. Nor did he talk to me; he talked to my parents (a phenomenon I would continue to experience until I was in my teens), trying to prepare them for the future.

No one talked to me. No one asked me how I felt about the whole thing, or how I was supposed to cope with this emotionally. But it was the ’70s. Children, even sick children, were to be seen and not heard.

A Rant, if I May

I have met so many parents that cannot wrap their heads around this. When I explain that while the hearing is fine, that the problem the child likely has is a listening one, they smirk and nod and say to the child, “See! I knew you were just not listening to me!”. And the hurt I see on kids faces really breaks my heart. I want to be their ally. I want to explain to their carers, the people on which their world depends that they do WANT to listen, but they cannot. I want to explain that there are many things they can do to make it easier for their child to listen, to parse that confusing, jumbly, noise their brain is presenting to them – without making it sound like concessions you have to make for a willful and “broken” child. To let them know that needing captions on TV is a valid and sound strategy and that they should encourage their children to assert themselves and ask for what they need from this noisy world of ours in order to make sense of it. Like asking for repeats. Like asking for repeats even if they get teased about being deaf, or get chastised for not paying attention the first time, or any of the other terrible things that happen when you ask for something already once given.

The fuzzy boundaries of accessibility

This is a thing that i’ve been thinking about since a couple of conversations with friends (both multiply-impaired, i.e. both neurodivergent and with physical/mobility impairments) about accessible and inaccessible venues: what are the boundaries of the concept of “accessibility”?

Since moving to a new city a month ago (more on which in an upcoming “personal update” post, if/when i get round to writing it), i’ve decided to firm up my policy of boycotting inaccessible event venues: i don’t want to give money to events or buildings that my friends who have different or additional impairments to me couldn’t get into. However, while this *looks* simple (at a superficial first glance), if you dig even a little deeper, all sorts of ambiguities arise…

Hate Propaganda and ‘Sex’

So, this bill would make it a criminal offence to kill members of a group or deliberately bring about conditions that would cause the groups’ destruction if you did it based on the sex of the people in the group. I should also mention that a bill similar to this has been introduced three times previously, and that this particular issue was mentioned in the latest version of the Pink Book (see p.25).

I am all for adding “sex” to section 318(4). I think it is amazing that it isn’t already there. I also think that since this is a private members bill and is at least the fourth attempt to make this amendment, the chance that it will actually become part of the Code is on the slim side. The Canada Human Rights Act and provincial human rights legislation across the country (I’m not going to link to all of theme here) prohibit discrimination based on sex. If its not OK to pay a woman less or deny her a home because she is a woman, then it seems only reasonable, to me, that it should also be unacceptable to advocate for killing or harming women because they are women.

Questions for a Twenty-something with CP

What advice would you have for parents raising kids with cp?

If your kid has cp they’re no different than any other kid, at least from their perspective. They know nothing else other than life with cp, even if they have siblings. I don’t see myself as someone with cp, at least not at first, and even then it takes someone pointing it out to make me see it. One of the biggest things that bothers me about parents of cp kids is when I hear them say things like, “I wish you could be normal,” or “Now you can be a normal kid.” It really makes my skin crawl. Once, while I was watching something on Discovery Health—I’m a Discovery Health junkie—this kid who was maybe 4 and had cp was having tendon lengthenings. Having had tendon lengthenings myself, I was interested to see the actual procedure done. This kid wasn’t even discharged from the hospital and his mom was crying—I mean bawling—because now he could be like “every normal boy” and I’m thinking…well I won’t tell you exactly what I thought since I’m sure you’d like to keep this at least PG-13! But basically it was, “That’s a lot of pressure to put on a kid who is barely out of an OR” especially since his normal isn’t “everyone’s” normal.

Audiences & “Disability Ghettos”

Shannon wants to talk about how his art and creativity are not tied to his disability. He wants to reinforce the idea that he is not there to fill the disability slot on any program. He is an artist. A performer. And he wants to be — no, should be — taken seriously as such. This is a really hard project. When funding often comes from disability related sources, you get promoted as a “disabled” artist. When disability is the first thing your audience sees, you are interpreted as a disabled artist. Disability has a way of making itself felt. And there’s not much you can do about it.

That said, no one should be going around — journalist or performer (it’s not clear whose phrase it is…the quotes seem to suggest it belongs to Shannon) — talking about disability ghettos.

What’s in a Decade or Why The History of Feminism Matters

And also, well, the past really is more complicated.

To start where Courtney ended: Yes, feminist blogs are very new, and they rock. The only blogs I knew of in the late 1990s were a few people’s personal online diaries. That was it. But by 2000, there were lots of online communities. For me, Salon’s Table Talk filled some of the needs that blogs now meet. I’d just become a mother, and I remember (for instance) lengthy discussions of Andrea Yates’ murder of her children that helped me place her act in a larger, political context of untreated postpartum depression and fundamentalist Christianity. Of course there were trolls on Table Talk, too, but it wasn’t the nightmare that Salon’s letter section is today. So, while blogs were the best invention since wine and cheese, they also built on existing forms of online community.