Monthly Archives: March 2010

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.

Jenny McCarthy & Autism Part 1: If we shame parents enough, maybe autism can be cured!

I read an article a few weeks ago claiming that Jenny McCarthy’s son had never had autism, so perhaps her argument that she had “cured” him of autism through diet and other non-medical means should be dismissed entirely out of hand.

The actual article in Time Magazine is a bit more complicated than that – there’s speculation within in that McCarthy’s son never had autism, and some discussion about how parents of autistic children have always looked for “cures” that vary from dietary changes to cooper bracelets, from vitamin shots to behavioral therapy, and that McCarthy’s thing is basically that she’s famous and has a son with autism and has used her larger platform to get more attention towards her cause. Okay, I can see that.

But I don’t like it.

The reason I don’t like the methods that McCarthy is advocating for are, at the heart, simply this: I think it harms parents of children born with disabilities, and I think it harms people with disabilities.

I want to start with parents of children who are born with disabilities, and then will talk about the harms to children born with disabilities (and the adults they become) in a later post.

The biggest recurring conversation I have with parents whose children were born with disabilities is how often they’re asked, whether explicitly or implicitly, what they did wrong. What they did to make their child disabled. What they are not doing right now to “cure” their child. What is their horrible failing that “made” this thing happen to their child. Often, of course, this is directed at the mother. Did you drink? Did you do drugs? Was there any way you could tell before the baby was born? If you had known, would you have gotten an abortion? Did you know as soon as your baby was born? Did you do something? Were you working past a certain month? Did you eat right? What did you do?

Because, you know, your child’s disability is all your fault. It’s a personal, moral failing on your part, and you need to do something about it.

I see these play out as well in the shaming of certain types of women for deciding to have children. Don’t you know that children born to mothers over a certain age are much more likely to be disabled? Don’t you know that you shouldn’t have a baby if you have a disability because your child might also have a disability? Shouldn’t we sterilize certain types of women so we never end up with more of their horrible, awful, crippled babies?

What does all of that have to do with Jenny McCarthy?

Jenny McCarthy was famous before she started on her discussions about her son’s autism, and became more famous afterwards, getting on Oprah to talk about her son’s “recovery” from autism. She talked about the special diets she put her son on. She’s probably the most famous mother of an autistic child. So, the biggest thing people are likely to know about autism now is that you can “recover” your child from if it you feed your child a special diet.

So why the hell is your child still autistic? Your child can be cured if you just try hard enough.

Quick: On top of all the self-blaming that many parents with disabled children do, have society blame you as well.

Certainly that makes it easier for people to dismiss the needs of families affected by disability. Your child is like that because you did something wrong, you decided to go forward with a pregnancy, you haven’t tried hard enough.

So flounder there.

I think it’s important to separate the experiences of parents who have a child with a disability, and the experiences of children and adults with a disability. There are conflicting needs when it comes to these two groups, and I feel that there’s a strong tendency to figure that if you’re helping parents who are currently non-disabled but whose children have a disability – especially if that child is autistic – then you’re helping the child as well. There is overlap, but not as much as the general public has been led to believe.

Part 2 will talk about Jenny McCarthy’s ideas and how they impact children with disabilities, and part 3 is about whose voices we amplify, and whose are ignored.

Stigma Kills: A Concrete Example

Often when bloggers or activists push back against ableist language and stereotypes in the media, especially pop culture, someone will respond with an argument that there are more important disability issues to address and that the topic at hand is mostly irrelevant to disability rights as a whole. This has happened with each of the posts in the Ableist Word Profile series, it’s happened with discussion about ableist tropes in pop culture, it’s happened when critiquing the vast overrepresentation of criminal behavior in news coverage of people with mental illness.

I believe these things matter very much. Perhaps not individually – if I slip and use the word “lame” pejoratively, it does not automatically cause a person with a disability to die instantly. But each individual instance adds up to become a trend, to become a larger understanding and expectation of how things are. And if those understandings and expectations aren’t accurate, it can have dramatically horrific results.

This is because a lot of our ongoing decisionmaking is done automatically, unconsciously. This is because we are constantly presented with such a vast amount of information that if we stopped to consciously evaluate everything, we’d never be able to do anything at all. When I see an object with keys labeled with letters and laid out in the QWERTY design, I recognize it as a keyboard an assume I use it to manually input written data into a computer or typewriter or phone or other device. This saves me the trouble of figuring out each and every time what this object is, what it is for, how I am supposed to interact with it, and what end result I can expect. I do this instantly, even though it is immensely complicated – it has been extraordinarily difficult to program a computer to identify, say, a keyboard from a photo or video, regardless of lighting, angle, and lots of other variables that the brain can process almost instantly.

There are similar examples for evaluating other sensory input. When I touch something, I know instantly and without consciously considering it whether the object is solid or liquid, dry or wet. I have no idea how I make that evaluation and instructing someone else on making that judgment would be immensely difficult for me – but when my foot touches a wet patch of carpet en route to the bathroom in the middle of the night, I pull my foot back lightning fast to avoid what is surely cat puke. If I feel myself losing balance, I put out a hand to catch myself without consciously deciding to, because my classification of my sensations as “losing balance” was done entirely unconsciously.

How does stigma fit into this? Well, a stereotype is an unconscious cognitive shortcut – instead of examining an individual person or situation, we apply a stereotype to make assumptions. While a stereotype is usually seen as a negative thing, they serve an important purpose by allowing us to make educated guesses. For example, when I go into a fast food restaurant, I know to go to the counter and give my order to someone behind the counter, usually wearing a uniform. While this has held true at the places I’ve visited in the past, if I go to an new fast food restaurant that I haven’t visited before, I will assume that I use the same procedure. That’s a useful assumption that saves me the time and energy of approaching each situation as brand new and unrelated.

There are times when stereotypes can be harmful and damaging, as we well know. The stigma against PWDs is an assumption applied to all PWDs simply because they are PWDs, assuming they have a set of presumed characteristics, motivations, and beliefs. It is a stereotype composed of all the understandings and expectations of PWDs conveyed by all the little things – the word choices of the people you talk to, that one character in that on tv show, that story you saw on the news last night. And although the specifics fade away, most people are left with vague, unconscious associations. Again, some of these associations are essentially value-neutral, as how I generally associate red with “stop” and green with “go” from traffic lights and signs. But people can also have unconscious associations around more complex and problematic issues, like race, gender, and disability status.

Social psychologists from Harvard developed a computer-based test to measure the existence of implicit associations and stereotypes – the Implicit Association Test (IAT). The IAT asks users to rapidly categorize words to the left or right of the screen. From the IAT FAQ:

The IAT asks you to pair two concepts (e.g., young and good, or elderly and good). The more closely associated the two concepts are, the easier it is to respond to them as a single unit. So, if young and good are strongly associated, it should be easier to respond faster when you are asked to give the same response (i.e. the ‘E’ or ‘I’ key [to indicate left or right]) to these two. If elderly and good are not so strongly associated, it should be harder to respond fast when they are paired. This gives a measure of how strongly associated the two types of concepts are. The more associated, the more rapidly you should be able to respond. The IAT is one method for measuring implicit or automatic attitudes and is featured on this website. There are other methods, using different procedures, that have been investigated in laboratory studies.

I’ve taken a number of IATs before (because I’m dorky about cognitive science and this kind of stuff) and believe that they have correctly identified in me some negative unconscious associations. For example, I unconsciously associated women with home and family and men with business. Consciously, I strongly disagree with that association! So when I do consciously consider my assumptions about those associations, I override and reject my unconscious associations.

When researching this post, I took the IAT that measures unconscious associations around disability. (I can’t link directly to that test, but it can be found in the IAT demonstrations available here.) Taking the test, I found that I have a slight automatic preference for abled people over PWDs. This doesn’t mean that when I act, speak, or even think about these issues I exhibit that preference. It doesn’t mean that I “really” prefer TABs to PWDs. It means that I have been sufficiently inundated by messages that associate TABs with “good” and PWDs with “bad” that I have a slight unconscious tendency to apply that association, a tendency almost instantaneously overruled by my conscious thought. So it is an association that exists only for the tiniest of moments until it is extinguished by cognition.

How can those tiny moments, almost too small to measure, even matter? Well, as Chally recently posted about, a Los Angeles police officer shot and killed an unarmed man with an unspecific cognitive disability autism [1. ETA since his family disclosed that he had autism in numerous public interviews.]. The officer fired as the man reached towards his waistband after failing to respond to verbal commands from the police. From the LA Times article linked in the post:

[LAPD Officers] Corrales and Diego believed “he [the PWD] was arming himself” and fired, Assistant Chief Earl Paysinger said at an afternoon news conference.

The officers made decisions in a fraction of a second,” he added.

In a fraction of a second.

Just long enough for the unconscious association to spark but not long enough for conscious thought to override it.

Just long enough for stigma to kill.

Recommended Reading for March 29, 2010

Anna’s note: Hi! I’m going to be included a link or two a day for the next couple of weeks that isn’t explicitly related to disability. I will also be increasing the number of links I put up a day – you may have noted that I lean towards 5 as my number – so that there are always at least five links related to disability. I feel that the other links that I will be including are in line with FWD’s mission to approach feminism from an intersectional perspective.

Everything I Needed to Know About Access Activism I Learned in Kindergarten

Or another reason might be that I’m tired of the responsibility for access issue being disproportionately allocated to the very people who are up against the access issues every. Single. Day. I would humbly suggest that every member of every University decision-making body has their own brain and can decide for themselves if they want to care about access, and if they want to become informed about the issues, and if they want to invest their time and energy into pushing those issues at decision-making levels. If non-disabled people on committees never think to ask themselves about disabled access, or never think to speak up about it, why should I think that my voice will be listened to? And what does that say for their commitment to access that they can’t be bothered to do the work themselves and instead decide to offload it onto precisely the people who do not have energy for it because we are too busy navigating an inaccessible campus?

Getting a token disabled person on a committee to keep “holding you to account” about disability or sexism issues is a good way of making it look like you care about equal opporunities when you just don’t care enough. Because if you really cared, you wouldn’t be relying on a disabled person or a woman to be doing your homework for you. You’d be doing your own homework, and holding yourself to account.

More on Classism, and some thoughts on Ableism, within Vegan Movements

Over the past year I’ve been thinking more about the privileging of the able-bodied (& neurotypical) in activist movements — including, but by no means limited to, veganism & animal rights. Often certain types of activism are held up as the pinnacles of commitment & getting shit done: direct action; mammoth demonstrations on the street; confrontational protests; etc. These are more risky for people who do not fit within a certain paradigm. For example, the risk of being dragged away by the cops at a protest may look very different to you if you are: POC; gender nonconforming; undocumented; a person with childcare commitments; female; disabled — not that any of these categories are mutually exclusive, of course!

Rethinking Work: Cooking as labour

Out of the kitchen and into the workforce arguments always had a class (and race) division to them: many women had already been working and didn’t find it particularly liberating. Many of them, often women of color, worked as domestic laborers as well—getting paid, if not very well, to do the same work they then did for free at their own home. Well-off women were already recognizing in their own way that cooking was work, and we still recognize this when we watch cooking shows on TV or go to restaurants, fancy or otherwise.

Now back-in-the-kitchen arguments have their own class dimension. They imply the time to spend in the kitchen as well as the money to buy fancy ingredients. Ethically produced local food tends to be more expensive partly because the people who produce it are being paid decently, so despite the lack of middlemen we pay much more for organic produce from the farm around the corner.

Dear Moby And Miley: Please Shut Up About The Disorders You Don’t Actually Have [I recommend missing the comments]

Your brain is not Sephora. You don’t get to walk in and pick a bunch of “trendy” shit to throw on in order to make yourself look better. And you don’t get to accessorize with the “hip” disorder of the day just to make yourself seem “weird” and “fascinating” to your stupid friends. That’s not how it works. And it’s not fair to those of us who actually do have to deal with such diagnoses, and all the work, medication, and often times difficulties that come along with them, to act as if it’s adorable or hilarious that you’ve declared yourself to have something that you don’t. You’re not helping the cause any, and you certainly aren’t helping to research or de-stigmatize such things by wearing them as some kooky hipster badge of honor. Nor are you helping the public’s perception of bipolar disorder by comparing it to your shitty movie options.

On my usage of “crazy”

When I first started working it out of my vocabulary, my criteria would be to stop and think (1)if I literally meant something was mentally ill or not (easily done by replacing the offending word with “mentally ill” and seeing if the sentence still worked), and (2)if yes, then was I putting that thing into a negative light by describing it that way. For example, if I’m reading a piece of literature and it’s really confusing to me and I throw the book down and exclaim “that’s just crazy!” – am I trying to say that I think the book or the author is mentally ill? And if I *am* trying to say that, am I saying it because I’m annoyed with it, and calling it crazy or mentally ill is a good way to discount it and feel better about not wanting to interact with it anymore?

If that’s the case, if I’m trying to imply that something is mentally ill because that makes it easier for me to throw it away, what am I saying about mental illness and those of us (myself included) who are mentally ill? Wouldn’t it be better for me to throw the book down and say “I really hate this author’s narrative style!” or “This is pretentious bullshit!” or “I can’t figure out the point of this and it makes me mad!”

I am tired of disability stereotypes and tropes

Do you know what I’d love to see? More shows and movies and books with character who just happens to be disabled. That their disability NOT be the focus of the episode but rather just happens to be included within the episode. No more super special episodes/movies/books about a super special person – but just an episode/movie/book with an interesting character who just happens to have a disability. One of the main characters on ER, Dr. Kerry Weaver, who was introduced as accomplished doctor – and that’s what the audiences saw the most because her disability was hardly ever mentioned. I’m sure there are other characters like her around – but I don’t know enough about them to counteract all the other characters I know of. The character portrayals that are bothersome and sometimes hurtful.

For Cereal, Time?

I was perusing the internets doing some research for work when I came across this lovely list from Time.

Seems some orthopedic surgeon is now the ultimate authority on all things medical…in every iteration thereof. Doesn’t matter what specialty or what your history. Dr. Scott Haig is now the expert, so stop what you are doing, right now. Do not pass Go, do not collect $200, and certainly do not trust whatever you have worked out in your personal health care, and just do what Our Dear Dr. Scott says.

Of particular interest to me is that the Great Dr. Scott says that narcotic pain medication “never” works for chronic pain. Ever. You should never use it unless your pain is acute, and if you are using it for such, you should stop, now. Forget your medical history, or whatever other methods you have tried or that have failed you:

The drugs are relatively easy to get and tempting to take, but you should never use them for chronic pain. Narcotics addiction is insidious. The drugs change who you are, and over time they make any and every pain worse.

This tidbit makes me want to say something to Our Dr. Scott…something that starts with an “F” and rhymes with “uck You”. Because Dr. Scott does not know my pain, or what I have been through trying to manage it, or how for the first time since all of this started I am living a semblance of a life that doesn’t leave me feeling worthless.*

I have some other very interesting and loud thoughts on Our Dr. Scott’s advice on “Exercising an Injury”, “Overplayed Allergies”, and “Google Abuse”, but I will let you all have at it now. I am going to go chronically abuse some narcotics.

/sarcasm.

*As in, each person has to decide what they can live with, want to live with, are willing to live with in terms of their medical care, and base their decisions on that personal choice insofar as it is in their control to be a part of that choice. It is part of my privilege to be able to do so and to say “I want to be able to do these things, and these side effects are worth it”. It is not that way for everyone, and I want to acknowledge that.

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?

Today’s chatterday is hosted by a handful of badgers.

half a dozen striped baby badgers held in people's hands
see more

Value Added

I’ve spent a lot of time over the past few weeks advocating with various people about issues regarding students with disabilities. (You may have noticed an upswing in posts from me about exactly this – now you know why.) Part of that has involved asking pointed questions about students with disabilities, and some of it has been writing letters to the editors, and some has just been sitting right in front of people so they – who I have talked to before about this – are reminded that students with disabilities exist and generally pay the same fees that their non-disabled counterparts do, so perhaps they should also be acknowledged as existing.

What I don’t think people who I am doing this for realise is that I am doing them a favour. And one it would be nice for them to acknowledge and thank me for.

Teaching people about disability-related issues is something I’m expected to do as a disability rights advocate. To others, of course I should spend an hour sitting with someone and explaining ways that I find the Student Union Building on campus to be inaccessible and offer them suggestions on how to fix it. To them, it’s a favour they’re doing me if I lead them on a two-hour tour of my campus explaining just the various accessibility-related issues that I am aware of, and referring them to other people I think would be helpful for them to consult. If I spend, say, an afternoon drafting up book lists or an evening chatting with them about accessibility in their space, they perceive that as something they are doing for me.

But people with disabilities are people who may, for example, come to your university, and bring tuition dollars with them. They may come to your event and buy tickets. They may present poetry of amazing beauty and cutting cruelty at your poetry slam.

When I, or other disability rights activists, or other people with disabilities who do not perceive themselves as activists, dedicate their time to explaining something about accessibility to you, they are doing work. They are taking time they could be spending doing anything else, and giving it to you, so that your project/event/blog/university/home can be welcoming to more people.

It’s not that I think people who are not disabled should never ask people with disabilities or disability rights activists to discuss issues related to accessibility and disability with them. But I really wish that people would, quite frankly, treat that as work we are doing.