Recommended Reading for Monday, December 20

Oh, happy day. They were testing the fire alarms in my building. For two hours. Yes, they work. I have no idea how Don slept through them.

Also, this is going to be a bit of a massive edition of Recommended Reading because I have open many many tabs and want to close them.

Bipolar Burble: I Can’t Remember Not Being Depressed: Emotion and Memory

When I am depressed I can’t remember what it’s like not to be depressed. It’s an interesting phenomenon, actually. Although I, logically, can state that I have spent massive chunks of my life out of major depression, when I’m depressed I feel that’s not true. I literally can’t remember what non-depressed feels like. Logic ceases to be convincing. I understand there’s a high statistical likelihood that depression will pass. But I just can’t believe it when depressed.

Learning Disability Bulletin: Disability Living Allowance Discourages Work? I don’t think so

The facts about learning disability and employment are stark. The latest statistics suggest that in Scotland only 4.3% of people who have learning disabilities are employed in the open workplace. That is a shocking statistic. However, for the Department of Work and Pensions to suggest a causal relationship between Disability Living Allowance and unemployment is at best naive and at worst cynical.

Many people who have learning disabilities would love to have the opportunity to work. However, there are numerous barriers standing in their way. For many, there has been an incorrect assumption that they would be unable to work throughout their school or college lives and as such they have not been encouraged to understand the importance of having a job. ENABLE Scotland is supporting schools, colleges and people who have learning disabilities across Scotland to change some of these assumptions.

The Emperor Has No Toque: One Block: a Tale of Two Caregivers

In most health care institutions, there is institutional stigma regarding mental illness. Rarely are MH patients treated with warmth, or mutual respect, but usually treated like opposing forces. Very few more facilities are newer, up to date or maintained as well as the physical health side of the coin. Mental Health care even though it serves a large and diverse population is usually the recipient of hand me down facilities and equipment. And yes some hospital staff offer different levels of care for mental health and physical health patients.

Gazza, The Rebuttal: The Last Post (via The Abundance of my Heart)

But we deafies that need to watch movies with captions are a fragile lot. So instead of rolling out captioning they have decided to proceed with caution for our own good. “We didn’t know people would get sick!” they claim. “It’s not our fault that the technology has let us down!” they proclaim. That most movies released are 2D and that sickness watching 3D movies is nothing new is not something that the cinema bosses highlight. And let’s not forget our Blind and vision impaired friends! Presumably they get sick listening to 3D movies through audio description so we have to delay the roll out of that too. Bottom line is that the excuse the cinemas are spouting to delay and water down the rollout of captions to cinemas is POPPYCOCK. It’s an excuse! They are throwing their toys out of the pram because they had their hands forced when nearly 500 people let the Australian Human Rights Commission know that what the cinemas were offering was pathetic and that they wanted more. And for once the Australian Human Rights Commission showed some teeth and told the cinemas that what they were offering was an insult and that they needed to do MORE! Now all of this seems to have been to no avail.

Latte Republic: Disability, Work, Income, and Benefits

There are approximately 38,000 Washington residents who depend on the Disability Lifeline program. I challenge readers to live on $450 a month (cash grant plus food stamps). That’s $5,400 a year. The stress from the financial hardship alone is enough to kill a person. No matter how you look at it – it’s inhumane to treat the disabled this badly. We should be ashamed of ourselves as a nation and a state.

Disability Lifeline program enrollees can not accept financial assistance from churches or relatives. If they receive more than the cash grant in any month, they are removed from the program. In 1995, Welfare reform removed the penalties that prevented recipients from working. It’s time to remove those barriers for the disabled. Many disabled citizens could work part time or in their homes, if the prohibition against work was lifted. We should encourage worker re-training and vocational education and allow recipients to accept financial assistance from churches and family members.

Benefits Helped Turn My Life Around (via Forthwritten)

As soon as I was discharged with a punishing regime of psychiatric medication to control my condition, I was advised to find a job. It would give me something to do and besides, living with my employed boyfriend, I wasn’t entitled to benefits. Despite being noticeably manic, with difficulty caring for myself and a tenuous grasp on reality, I looked for employment. In between my grandiose applications for gym instructor roles, I found a job with the help of a friend. I was barely able to wake up in the morning due to the sedating effects of my antipsychotic medication, which gave me embarrassingly noticeable hand tremors. I slurred my speech, and was routinely asked at work if I had been drinking. Though I had disclosed my illness to my employers, I was unable to get time off for psychiatric appointments. Bereft of that support and barely able to take medication because of the adverse effect it had on my work, I became ill again.

NZ: Tasers Used in Mental Health Cases

A new study shows that police tasers are more than twice as likely to be used at mental health emergencies than criminal arrests.

Canada: New Coalition Calls For Completely Accessible Broadcasting System

“While current regulatory trends mean that sight- and hearing-impaired Canadians will only obtain complete access to television in thirty years, Access 2020’s goal is to achieve fully captioned and described television content within the next decade,” said Beverley Milligan, on behalf of Media Access Canada which is leading the Coalition. “We will be inviting the CRTC to empower Canada’s accessibility organizations to research, test, develop and monitor the implementation of modern, multi-platform digital accessibility standards.”

By 20 December, 2010.    recommended reading   



Signal Boost: United States: Get Restraint and Seclusion Out of Schools!

I’ve been following the Keeping All Students Safe Act, an important piece of legislation for keeping disabled students safe in school. I’m horrified to learn that the Senate version of the bill, S. 3895, actually includes measures allowing for restraint and seclusion, which I missed when I posted about it earlier this year. (Mea culpa!)

“COPAA cannot support the current legislation because S.3895 permits restraint and locked seclusion as planned interventions in students’ education plans, including behavior plans and individualized education programs,” wrote the group’s executive director Denise Marshall. “By allowing restraint and locked seclusion as planned interventions, S.3895 weakens protections under the Individuals with Disabilities Education Act (IDEA) and legitimizes practices that the bill seeks to prevent.” (source)

If you are a USian with the time, please write your Senators and ask them to remove this portion of the bill. Restraint and locked seclusion are never appropriate for students and they most certainly do not belong in individualised education programmes. It’s time to take abuse off the table when it comes to options for disciplining students!

Signal Boost: United States: AHEAD 2011 Conference on Higher Education and Disability in July

The Conference and Program Committees and the AHEAD Staff are hard at work planning the AHEAD 2011 Conference to make sure attendees have an incredible time, get loads of new invaluable information and resources, meet new colleagues & friends (while reconnecting with “old” ones), and enjoy one of the most beautiful cities in the world.

For purposes of budgeting and planning, the following details may be helpful.

The Conference registration costs will be the same as they have been since 2008. For AHEAD members, the full registration will be US $475.00

The optional, and tremendously valuable, preconference institutes (between ½ and 2 full days) will cost between US $95 and US $295 depending on session selections for AHEAD members; again retaining 2008 pricing.

While nearly all events associated with the Conference will be held at the Washington Convention Center, housing for Conference attendees will be at the Sheraton Seattle Hotel (across one side street from the Convention Center). AHEAD has negotiated deeply discounted room rates for both single and double occupancy at US $199.00 + tax.

The overall schedule for the Conference will be:

Monday, July 11th: Preconference Institutes
Tuesday, July 12th: Preconference Institutes (Daytime) Welcome Reception (Evening)
Wednesday, July 13th: Keynote, Concurrent Sessions, Posters, Exhibits, Reception
Thursday, July 14th: Concurrent Sessions, Posters, Exhibits
Friday, July 15th: Concurrent Sessions, Posters, Banquet
Saturday, July 16th: Concurrent Sessions, Closing Plenary (ends at Noon)

If you need to register way in advance in order to encumber funds well in advance, please download the Advance Registration Form and submit it to the AHEAD Office with payment at your convenience. If you need special financial arrangements, please contact AHEAD’s Associate Director, Oanh Huynh, directly.

As always, if AHEAD may be of any assistance in your planning – please feel welcome to contact the AHEAD office at (v/t) 704-947-7779.

We look forward to seeing you in Seattle for
AHEAD 2011: Sustainable Access through Partnership!

Tons more information at the AHEAD website!

By 20 December, 2010.    signal boost  , ,  



Recommended Reading: Comics and Graphic Novels

As some of you may know, I am a cartoonist and graphic novel fan in addition to my regular duties blogging here at FWD. While I don’t get the “HEY ANNAHAM WHAT COMICS AND STUFF DO YOU LIKE TO READ?” query too often, I thought it might be useful to give an overview of graphic work that I think FWD readers and commenters might enjoy. Many of my recs have to do with illness and disability; a few, however, don’t. I’m always working on a new cartoon of some sort (mostly single-panel or multiple pages), and want to share the fruits of my research with folks who may want to read graphic novels, but have no clue where to start. Alternatively, some of these might make useful gifts for the holidays, either for the comics fan in your life or for yourself!

Lynda Barry: This woman is pretty much my hero. Although Barry has a background in art, her work shows that you don’t have to draw comics “realistically” for them to have an impact, or for the artwork to be strikingly beautiful. I probably would have stopped drawing autobiographical cartoons long ago were it not for her work; I do not have much artistic training to speak of, and there seems to be a widespread misconception that only “trained” artists can draw cartoons worth reading! While Barry does not address disability in her cartoons, many of her colorful slice-of-life strips bring readers back to the confusing and bizarre world of childhood and adolescence. If you were — or are — a “weird kid,” you will absolutely connect with Barry’s comics. Her 2008 creativity manual-slash-collage dreamworld What It Is may be particularly useful for the artists (or wannabe-artists), or indeed anyone who needs a push to start writing and creating; a follow-up, The Near-Sighted Monkey Book, was recently released. For those not familiar with her work, I recommend The Greatest of Marlys (a compilation of her long-running alternative comic strip Ernie Pook’s Comeek) and the autobiographical collection One! Hundred! Demons! to start, followed by What It Is; for those of you who like darker material involving (fictional) teenaged misadventures, drug use, and general weirdness, her illustrated novel Cruddy is a must-read.

Alison Bechdel, Fun Home (2006): Known primarily as the writer and illustrator of the alternative comic Dykes to Watch Out For (also worth checking out!), Bechdel really hits her stride with this lengthier autobiographical tale of family drama, the tensions between appearances and reality, destructive secrets, and sexual awakening. I could provide a synopsis, such as “This is a story about the writer’s complex relationship with her father,” but it is so much more than that. This is one of those books that I want to recommend to everyone who enjoys reading; it’s a work that rewards the time put into it tenfold. I get something new out of it every time I re-read it. The way that Bechdel draws facial expressions is nothing short of priceless, and the narrative as a whole is consistently amazing, complex, and intense.

Al Davison, The Spiral Cage (1989): This one can be sort of hard to track down, but: it’s very much worth the effort. Davison has spina bifida, and this graphic novel chronicles his life with both that condition and Chronic Fatigue Syndrome/M.E. The result — with its many nods to surrealism, and interesting explorations of masculinity and disability, as well as spirituality — is an honest, beatifully written and illustrated look at life with multiple disabilities.

Rantz Hoseley (editor) et al., Comic Book Tattoo (2008): Do you like (or love) Tori Amos’ music? Do you enjoy comics? If so, this is probably an anthology that you will get lost in for a couple of days. I was way, way into Tori’s music before I discovered comics and graphic novels, and the amazing range of this anthology — a collection of short graphic works and interpretations inspired by the singer’s massive back-catalog — makes it worth a look. For a compendium with such a huge variety of artistic styles and song interpretations, this collection has very few duds, and the overall quality of the stories included makes it worth the $30 price tag. This is not an anthology that you will read only once and then shove it onto the bookshelf to collect dust, in other words.

Harvey Pekar and Joyce Brabner (with illustrations by Frank Stack), Our Cancer Year (1994): Comics writer Harvey Pekar (he died earlier this year) was known as the cranky protagonist of American Splendor, but this collaboration with his wife, peace activist and journalist Joyce Brabner, brings illness and disability into the mix, and the result is positively great. Although the Pekar-Brabner-Stack team do not gloss over the realities of cancer at all — there are ample panels, and pages, that show the gruesome, life-altering effects of testicular cancer and its harsh treatment protocol — one does not get the sense that showing the worst aspects of this disease is for shock value. As Pekar and Brabner assert at the start of Our Cancer Year, this graphic novel is not just about cancer — it is also about partnership, the everyday (or not-so-everyday), and life.

David Small, Stitches (2009): For a full-length graphic work that doesn’t use much text or dialogue, this is certainly an astonishing piece. Small, who is a children’s book illustrator, utilizes his unique artistic style for this memoir, which tells the affecting tale of his battle against cancer — and near-fatal family secrets — starting when he was 11 years old. Small’s success at creating an overarching mood in this book is difficult to describe; all of the seemingly small choices that he makes as an author and illustrator here add up to a memoir that is both harrowing and ultimately life-affirming. In a review of Stitches for PopMatters, writer Sean Ferrell comments that “[the] book does not exemplify rising above, it exemplifies the continuing, life-long struggle to release the toxic histories we drag around with us.” It is truly to Small’s credit that he has used such painful past experiences to create an unforgettable work.

Commenters, what are some of your favorite comics and graphic works?

Dear Imprudence: Speaking of Holiday Tensions…

Dear Imprudence’s recent reader livechat featured a question that made me go ‘oooh, ouch, been there,’ from a reader writing on behalf of a daughter hounded by family members, specifically her grandmother, about her weight.

Q. Grandmother’s Obsession With Weight: My daughter is a recent grad of a top 3 in the country school. She’s kind, pretty, has friends and is employed, going back to grad school. She’s a former college athlete but since school, has put on a huge amount of weight. While it’s a less than ideal situation, she’s seeking help for it. The issue is Grandmother. She’s old-school, from a certain area of the country that values looks and femininity trumps all, especially weight. She’s not at all slim herself, her kids have had eating disorders and her husband has been grossly obese for as long as I’ve known them. She’s terrible to my daughter and what she doesn’t say outright, she implies. My husband’s attempted many times to talk to her, but to no avail. We try to avoid seeing them, but during the holidays, it’ll be difficult. She always has the last word. Is there a polite way to shut her down? Sincerely, not a Belle.

I note two things about this article:

One, the grandmother is definitely behaving inappropriately and I think it’s good that the letter writer is asking for advice on how to handle the situation. I suspect the letter resonated with a lot of readers because this tends to be a time of year when these kinds of things start coming up a lot and having a little library of sharp reports to draw upon can be useful for navigating unpleasant social situations.

Two, the letter writer has got some fat hatred to deal with. Despite being disparaging about how the grandmother views weight, suggesting that grandmother’s ideas aren’t shared, the letter writer makes sure to mention that grandfather is ‘grossly obese,’ and that gaining weight after stopping high energy college athletics is ‘a less than ideal situation1.’ The letter writer notes that the grandmother is ‘not at all slim,’ evidence that she, of course, would have no room to talk, and the letter leads right there with that damning one-two punch that gets thrown at fat people: well, you’re fat, but at least you’re ‘pretty’ and ‘kind.’ And ‘have friends’ despite the fact that you’re fat! Gosh, it’s almost like fat people are human beings.

Here’s what Prudence said in response:

A: Your daughter is an adult so she’s the one who needs to handle this situation. You can have a talk with your daughter and say that you dread hearing her grandmother’s nasty remarks and you want her to be ready to parry them. “Thank you” is an all-purpose non sequitur. Your daughter can also be more direct: “It’s good to see you Grandma. You’ve expressed your feelings about my weight many times, so I know how you feel. I’d like to enjoy the holiday, so I’d appreciate it if we don’t discuss this anymore.” If grandmother won’t stop, your daughter just needs to say, “Good to talk to you. Excuse me, I’m going to see Uncle Ed.”

Prudence covered the first topic with some pretty solid advice. But she didn’t touch the second. Was it a good move?

I think there’s a solid argument to be made for covering the question ostensibly being asked in the letter and focusing on the issue of making the daughter feel more comfortable at family gatherings while choosing to elide the letter writer’s own embedded bigotry, with the goal of not alienating the letter writer and making sure the advice gets where it needs to go. On the other hand, though, what is the daughter internalising at home around the letter writer, and how are comments made by the letter writer contributing to the distress she experiences as a result of family pressure about her weight?

But I’m not sure the logic here is that complex; I honestly suspect those snide comments slid right past Prudence when she was drafting her response, because they’re a reflection of attitudes that are so common, so widespread, so ubiquitous, that they don’t even attract attention unless you’re specifically looking for them. They just pop right past.

Yes, that’s me, looking for something to get offended about. No, really, I think that these kind of dogwhistles and codewords are evidence of the uphill struggle we have when it comes to fighting social attitudes. This is a situation where the letter writer could have used some advice too, and didn’t get it.

  1. Newsflash: What happens when you stop engaging in athletics? You tend to put on some weight as your body adjusts.

By 18 December, 2010.    Dear Imprudence  , , ,  



It’s Okay Not To Holiday

A whole lot of people are celebrating holidays right now, and it seems like the holiday season is a source of stress for many of those people, particularly people with disabilities. Stress about attending family events and dealing with judginess or inaccessible houses. Stress about being required to go to holiday parties for work. Stress about being forced to observe religious traditions you don’t follow in the interests of not causing ‘a scene.’ Stress about hosting events and cooking and making sure everyone’s happy. Stress about buying presents. I see the stress everywhere; everyone I talk to is unhappy, everything in my RSS is exploding with holiday-related stress, and it seems more like the season of misery than cheer for a lot of people.

Maybe that’s not the case for you! Which is awesome. If you love the holidays and look forward to every single aspect and are just bursting with excitement, well, you  might not like this next part very much: I don’t celebrate the holidays. I don’t buy presents, I don’t send cards, I don’t put up ornaments, I don’t attend parties, I don’t cook mammoth amounts of food, I don’t travel to be with family. This is in part because I’m not religious; we celebrated Christmas when I was a kid but it was purely secular and as soon as I grew old enough not to resent the fact that everyone around me was getting presents, we stopped. The last holiday event I attended was a Passover Seder a bunch of friends hold every year.

But it’s also because I hate social gatherings, I hate the fraught social minefield of handling cards and presents and things, I can’t deal with large crowds of people and Smells and all of the things that are usually present. So I pretty much check out during the month of December, when the United States is caught in a flurry of Christmas, 100%, all the time. People seem shocked and horrified that I don’t celebrate even a little.

And, you know, a lot of people seem to view me with pity when they find out I don’t have plans for Christmas dinner or what have you. They seem to think that I must be really sad about this, about ‘not having anyone to celebrate with,’ and I’m usually deluged in invites to attend events, which I politely turn down. It was only very recently that I realised very few people are willing to come out and say something I think is pretty important:

It’s okay not to holiday.

If you don’t want to celebrate at all, for whatever reason, that is okay. It’s also perfectly okay to decide that you want to limit what you do during the holidays, again, for whatever reason. Maybe you have limited energy and you want to budget it to do something you care about, like lighting the Yule Log, and you’d like to politely turn down things that will be drains on your energy. Maybe you just plain don’t want to go to the holiday party where everyone will stand around drunk and talk in increasingly loud voices about nothing in particular. Maybe the thought of dealing with family makes your hair change texture and you really just want to spend a few quiet days at home, perhaps alone, maybe with partners or friends. Whatever. It’s okay.

You don’t need my permission for any of those things, of course. But I know that sometimes I find it helpful to be reminded that it is actually okay to take care of myself. I can request or refuse things and not explain them. I can make choices designed to protect myself, whether it’s from really indifferently cooked turkey or from relatives I can’t stand being around. And you can do that too; you don’t owe anyone your time, or your energy, or anything else.

Writing in November, I talked about the pressures many people experience around food and the holidays:

It’s hard, I know. There is no one easy solution; not all of us have the choice to opt out of obligations, not all of us can speak up at the table, not all of us have a choice about where we eat and when and how and what is in front of us. There may only be small, small things you can do to assert your space and your right to exist, and I’m not going to tell you what you should or shouldn’t do. I’m not going to say ‘just don’t go to holiday dinner if you don’t want to’ because I know it’s not that easy, and I know you’re a grownup, and you can make that choice if you want to. But I am here to tell you that I support you in whatever choice you make, in any choice you can make that will increase your happiness levels at a time of year when things are often grim.

You are allowed to do whatever small things you need to do to make the holidays, whether you celebrate or not, easier for you. That might be politely suggesting that you cannot host the family holiday party this year even though you really want to because it eats a lot of energy. It might be offering an alternative to something you cannot or do not want to do; ‘gosh, I would love to attend dinner at your house but I think it will be a little overwhelming, why don’t just you and I go out for lunch the day before to catch up?’ It might be asking your family to please respect the fact that your identity is not up for debate or discussion. Whatever small or large action you decide to take, remember that you, too, are a human being with boundaries and limits and that you deserve to be treated with respect.

By 17 December, 2010.    life changes, normality, othering  , ,  



Training is Important

When I hear people joke about cutting and self harm, I often shake my head with amazement at how little they seem to understand that behavior. I’ve always kind of assumed that if someone went to a hospital seeking help for their own self harm, they’d find people who were better informed and better equipped to help them. Well, according to the results of a recent survey of National Health Service professionals in the UK, that’s not the case:

Less than half of NHS professionals believe they or their team have had sufficient training to undertake assessments of people who self-harm, according to research by the Royal College of Psychiatrists. The College asked more than 1,500 of its members whether they felt they had adequate training and less than half of respondents felt their training was insufficient to carry out assessments… 26% of staff felt that they did not know about self-harm to communicate effectively (59% of staff in the emergency department).

As one of the members of the working group involved in the survey and report points out, this is a serious problem: “When a person turns up to hospital having harmed themselves, this may well be the first time they have had contact with the health service. Failure to deal effectively with a person at this stage can have major repercussions. It may discourage them from returning in a later crisis and stop them getting the care they need.” It’s also a problem because the general stigma against people who self harm goes unchecked: “large numbers of healthcare staff have a profoundly negative reaction to patients who harm themselves, compared with those with physical illness, and … this is likely to be reflected in the quality of clinical care.”

Not only is this problem serious, it’s also pervasive, as the report estimates that 4 in 1,000 people in the UK self harm, resulting in 170,000 people presenting themselves at hospitals for help with self harm every year. And of course, members of some groups are more vulnerable than others, including asylum seekers, minority ethnic groups, prisoners, QUILTBAG people, and veterans. Young people are also more likely to engage in self harm. And these people are not getting the help they need, the help they deserve.

(You can download the full report here.)

Recommended Reading for 17 December, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

United States: Tampa’s ‘Sensitive Santa’ allows children with autism to get photographs, too by Shelley Rossetter at the St Petersburg Times:

The mall’s owner, Glimcher Realty Trust of Ohio, started Sensitive Santa in some malls nationwide two years ago and extended the idea to all its properties this year, said Kristy Genna, marketing director for WestShore Plaza.

Ireland: Deaf man can sit on jury, says judge by Eithne Donnellan at the Irish Times:

A HIGH Court Judge has ruled for the first time that a deaf person can sit on a jury in the Central Criminal Court.

Mr Justice Paul Carney yesterday ruled that profoundly deaf teacher Senan Dunne could sit on a trial jury with the aid of a sign language interpreter. He said objections to having a “13th person in the jury room” in the form of a sign language interpreter could be met by the signer taking an oath of confidentiality and the jury foreman ensuring that she or he was confined to translating what went on.

Just updating you on the situation in Sierra Leone (see RR for 3 December): In Sierra Leone, Disability Congress Writes President Koroma by Abdul Karim Fonti Kabia at the Awareness Times:

The NDC highlighted that persons with disabilities remain severely under-represented in political and decision-making positions; disabled hold only 0.01% of parliamentary seats, and; the current representation of disable persons in cabinet is at 0.0%.

Indonesia: City to Soon Issue Bylaw on Disabilities at BeritaJakarta.com

As form of its attention to the disabled, Jakarta capital city government plans to implement local regulations on building facilities and accessibility for the disabled, including the sanctions for the violators. At present, there are approximately 35 thousand disabled people in five administrative areas of Jakarta.

Australia: ‘Warringah Council is seeking feedback on design concepts for the Collaroy Disability Tourism Precinct,’ something you can read about in Disability precinct design feedback wanted at the Manly Daily. Also see Windfall for disabled, also by Brenton Cherry at the Manly Daily:

The vision is to create a holiday destination for people with disabilities and their carers as well as a specialist economic business hub for Collaroy.

It would be a place where not only access to the beach, including to the water using an amphibious wheelchair, is possible, but also restaurants, public transport, accommodation and entertainment facilities.

Here’s the page on the Warringah Council website. Collaroy is a beautiful place on Sydney’s Northern Beaches. I am so excited to hear about this proposal, and hope that more people will be able to enjoy that stunning beach!

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited. And have yourself a fabulous weekend.

Quoted: bell hooks

Cultural criticism can be an agent for change, educating for critical consciousness in liberatory ways, only if we start with a mind-set and a progressive politics that is fundamentally anti-colonialist, that negates cultural imperialism in all its manifestations […] In many ways progressive cultural revolution can happen only as we learn how to do everything differently.

–From “The Heartbeat of Cultural Revolution,” introduction to Outlaw Culture, 1994

By 16 December, 2010.    Quotations   



Guest Post: Embracing Disability, Struggling for Emancipation, part one: Rocky Beginnings

Eliot Renard is a genderqueer, feminist, socialist Chicagoan who enjoys making math and science accessible and fun for students through various online tutoring programs.  Ze also has a health blog, personal blog and tumblr, because compartmentalizing is fun.

I began experiencing the symptoms of what I now know to be depression, fibromyalgia and chronic fatigue syndrome when I first hit puberty.  When I complained, the doctor would usually laugh and attribute my complaints to growing pains.  I was told many times by family members and medical professionals to grow up and to stop complaining.  So, I did.  For a decade.

Fast forward to now, and I am once again vocal about my experiences.  This willingness to speak up – to come out as a chronic pain, fatigue, and depression sufferer – has been incredibly beneficial.  I am now on treatments that greatly reduce my muscle pain and depression symptoms, although I have yet to find a solution for many other symptoms.   I have a supportive husband who understands when it’s me speaking and when it’s the pain speaking.  He has adapted admirably to “physical contact rules” that change daily.  He encouraged me to seek out a therapist, which I was reluctant to do after an extremely negative experience with a therapist in my childhood.  He helps me with whatever tasks I cannot accomplish on a given day.  In short, he is a wonderful spouse helping me through a very rough adjustment period.  The rest of my family, however, is problematic.

When my health began to decline rapidly this past summer, I assumed that my mother and grandmother, both diagnosed with rheumatoid arthritis for at least a decade, would understand what I was going through, and instinctively know how to support me.  This assumption was untrue and unfair; being in pain and watching a loved one in pain are two very different experiences.  So, after many conversations in which I asked them repeatedly not to say some hurtful, untrue, and pointless things*, I sent out an email with a list of the offensive remarks, why they were offensive, and a request that the remarks stop immediately.

Unfortunately, this attempt was unsuccessful.  Every phone call was about my illness, and how I wasn’t doing enough to get better – I should be exercising more, undergoing this or that treatment, stopping this or that medication, finding something I “really want to do”, unlike the graduate school I loved and had to leave because I couldn’t get out of bed, much less get to campus and perform a 16-hour work day, being happier, etc.  Things got bad enough that I attempted suicide in September.  It felt like I was not only losing my physical and mental functions, but my family as well.  Nothing I tried was working, and it seemed that there was no way out.

After the suicide attempt, I turned off my phone for a week.  The first person I called when I felt well enough to use the phone was my little brother – he needed to know that none of this was his fault.  My sister’s 6-year-old son happened to be present, so I got to talk to him, as well.  My nephew noted that it had been a long time since we had talked.  I replied that I was sick and needed to turn my phone off for a while.  My nephew’s response was absolutely perfect: “Well, I’m sorry you were sick, but I’m glad you feel better.  At school, I got a dinosaur, and…”

Why can’t the adults in my life figure that out?  Why is treating someone like a person so difficult, not only for my family, but for people on the street or the bus?  Most of my frustration is not actually born from the constant pain, fatigue, fog, etc. – it is from the rest of the world failing to accept me as I am.  And, given the amount of frustration my illness itself causes me, that’s saying something.

*[Bingo, anyone?]