Yearly Archives: 2010

Dear Imprudence: Getting It Right! (For Once!)

s.e. smith recently passed on a question from a Dear Prudence column (3rd question down) that, well, actually gets things right. We were both pretty surprised! The question asked is shockingly similar to my own situation, but I swear I didn’t write in to ask it. The questioner writes:

I work in a social-services-related field and have bipolar disorder. I am open and honest about my diagnosis. … I have been having issues with one of our interns, who is in her mid-20s and pursuing a master’s degree in clinical psychology. On the surface, she is very pleasant. The problem is, anytime she and I disagree about something (which is often, because apparently she knows everything and I know nothing), she rolls her eyes, waves her hand, and declares that I am “just bipolar.” This is alarming to me because she intends to work with such populations, and though I can take it without becoming suicidal, many bipolar people can’t. Part of me wants to simply ignore her, but when I do, she continually asks me, “What’s wrong?” She is probably going to be with us for another year, and I want some peace and a little less condescension when I go to work.

Hey! I have bipolar, and I work in a social-services-related field! The difference is, if I ever encountered anyone who put a hand in my face and dismissed me as “just bipolar,” I would have a written warning in their file before they could even blink. This is not only because I don’t tolerate that kind of flip dismissal, but also because the attitudes of social services staff towards people with mental illness can have an enormous impact on the quality and effectiveness of services delivered to people with mental illness. It is damaging to the agency as a whole to have those attitudes expressed to clients by agency staff and it is an amazing disservice to approach people who need social services with such a dismissive, discriminatory, and oppressive attitude. To her credit, Prudence clearly sees this aspect of the issue:

Since she’s an intern and plans to go into your field, take seriously your duties to guide this obnoxious young person… If she doesn’t stop, or escalates her rude and dismissive behavior, keep your cool and explain to the higher-ups that while “Brittany” may have some promising qualities, she needs some serious attention paid to how she treats others.

This is exactly right. Social service agencies need to ensure that staff do not transmit these attitudes to agency clients. Unforutnately, based on my experience, it is not uncommon to encounter agency staff with these kinds of attitudes, primarily because agencies tend to provide little training or guidance to staff in dealing with clients with mental illness. Staff are then forced to rely on the (mis)information about mental health conditions they’ve accumulated through their lives to shape their opinions and actions, which can often lead to attitudes and behaviors like the one discussed by the questioner.

I’ve found that most people have a vague conception of what depression is and that it could be connected to suicide, but have little conception of how depression can affect a client’s everyday life. This is especially problematic when agency staff expectations for client’s behavior doesn’t account for the effects of their depression. For example, we often need to gather and review a client’s entire medical record to evaluate the merits of a potential disability claim. This can be a very complicated process – submitting medical records requests to every medical provider from which the client has ever received treatment, wrangling with records departments who want to charge exorbitant fees, following up with records departments who ignore, misplace, or deny records requests. Understanding the effects of depression is key for agency staff in how they instruct clients to gather these records, how they respond if or when a client fails to follow through, and the extent of assistance the staffer is willing to provide the client in this task. I’ve found that for a client with depression, an instruction to “gather all your medical records for us to review” can be so overwhelming and intimidating that they are unable to manage the task. Staff are likely to perceive this client as “not really committed to their case” and insufficiently willing to cooperate with the agency in pursuing their goals. This can mean the difference between providing the assistance a client needs to succeed and closing the case because the client “didn’t really want this benefit.”

Beyond depression, there is virtually no understanding of the variety of mental health disorders or the impact they can have on an individual’s functioning and ability to participate in their own advocacy. Schizophrenia and dissociative identity disorder are conflated and often ridiculed. Disorders on the autistic spectrum are not understood at all. Post Traumatic Stress Disorder is often dismissed as an overly sensitive reaction to trauma that “everyone has in their lives.”

This lack of understanding means that staff are completely unable to provide reasonable accommodations to clients with mental health disorders. Which in turn means that clients with mental illness, overall as a group, receive less effective and meaningful services from the agency as a whole. Which means that not only are agency resources more likely to benefit folks without mental health issues, but those expended on clients with mental illness are more likely to be wasted and not “land” effectively because they cannot effectively create the change the client is seeking. So, everybody loses.

The solution is more training, education, support, and guidance for agency staff on understanding these issues and providing effective services to this community. While attitudes like those of the intern in the question are unfortunate and disappointing, some of the blame has to be laid at the foot of the agency itself for failing to provide training, policies, and protocols to ensure staff are educated on these issues and know better. So while Prudie’s recognition that the intern’s attitude is fundamentally unacceptable and must be addressed if she hopes to continue in that area of work, I would go one step further and advise the questioner to push for training and support for all staff at her agency to ensure everyone has the information and tools they need to provide effective services to clients with mental illness.

Web Event: Accessible World Tek Talk presents Dean Martineau discussing Speech Recognition, July 19, 2010

Would you like to write documents by speaking to your computer, rather than typing, or are you somebody who needs to perform all your computer operations with little or no use of your hands? While still challenging, these feats are becoming ever more possible with the steady improvement of speech recognition technology.

Dean Martineau will provide an overview of the available resources to make this all possible on Tek Talk on July 19 at 5:00 P.M. Pacific Time, 8:00 P.M. Eastern time, 00:00 Tuesday GMT. He will provide guidelines to help you evaluate which of the available speech recognition options might be for you, and will demonstrate some aspects of them. This will be an opportunity for you to learn about the state of the art in speech recognition as it pertains to the blind, and to ask questions about your own situation.

Presenter: Dean Martineau
Email: dean@topdotenterprises.com

Date: Monday, July 19, 2010

Time: 5:00 PM PDT, 6:00 PM MDT, 7:00 PM CDT, and 8:00 PM EDT
and elsewhere in the world Tuesday 00:00 GMT

More details below:
Continue reading Web Event: Accessible World Tek Talk presents Dean Martineau discussing Speech Recognition, July 19, 2010

Disability Rights Fund Releases 2010 Round Two Request for Proposals

BOSTON, MA – The Disability Rights Fund (DRF)—a grantmaking collaborative between donors and the global disability community which supports the human rights of persons with disabilities—today announced its second 2010 “Moving Rights Forward” grants round. Grantmaking in this round will be targeted to disabled persons’ organizations (DPOs) in four regions and twenty countries: in Africa: Ghana and Uganda; in Asia: Bangladesh; in Latin America: Ecuador, Nicaragua and Peru; in the Pacific: Cook Islands, Federated States of Micronesia, Fiji, Kiribati, Nauru, Niue, Palau, Papua New Guinea, Republic of the Marshall Islands, Samoa, Solomon Islands, Tonga, Tuvalu, and Vanuatu.

The broad objective of the Fund—which was officially launched in March 2008 and is a Project of Tides—is to empower DPOs in the developing world and Eastern Europe/former Soviet Union to participate in ratification, implementation and monitoring of the United Nations Convention on the Rights of Persons with Disabilities (CPRD).

In the second round of 2010 grantmaking, applicant organizations from eligible countries may apply as: a) single organizations or partnerships for 12-month Small Grants and/or b) national DPO-led coalitions for 24 month National Coalition Grants. Grants to single organizations will range from USD 5,000 to 20,000 and will support efforts to build CRPD skills and to develop rights-based advocacy and monitoring on the CRPD. Grants to national DPO-led coalitions will range from USD 30,000 to 50,000 per year (60,000 – 100,000 over 24 months) and will support advocacy toward ratification of the CRPD, passage of specific legislation to accord with the CRPD, or the production of alternative/parallel reports to UN monitoring mechanisms.

Interested organizations are urged to review the full eligibility criteria and application details posted at the Fund’s website. Any questions on the proposal process should be directed to info@disabilityrightsfund.org. The deadline for applications is August 19, 2010.

In 2009, the Fund made 82 one-year grants to organizations in 14 countries (India, Mexico, Ukraine; Ecuador, Nicaragua, Peru; Ghana, Namibia, Uganda; Bangladesh; and Federated States of Micronesia, Fiji, Papua New Guinea and Solomon Islands), totaling USD 1,933,050. Grants ranged from USD 5000 – 70,000 and supported CRPD skills-building, local rights advocacy, and national-level CRPD promotion, implementation and monitoring by DPO-led coalitions.

DRF’s donors include Aepoch Fund, the American Jewish World Service, an anonymous founding donor, the Australian Agency for International Development (AusAID), the Open Society Institute, The Sigrid Rausing Trust, and the United Kingdom’s Department for International Development (DFID).

Recommended Reading for 15 July 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Sasha Feather at Access Fandom: Better microphone use at conventions: a report

Microphone use: pretty good, but myself and others definitely encountered able-bodied privilege in the form of people claiming their voices are good enough, loud enough, and gosh darnit mics just aren’t natural. In smaller rooms, mic use was worse than in larger rooms. Some people were “mic hogs” (not good at sharing or passing microphones); therefore more mics would be better for 6-panelist panels. Some people gestured with the mics or held them too far from their faces. I believe this shift in culture will take several years but we are off to a good start.

The Quixotic Autistic: Fröken Salander & Me: How a misanthropic computer hacker will change autism in literature and life (Potential spoilers for The Millennium Trilogy)

It’s not just revolutionary because it has a character with autism. It has a person with autism as one of the main characters (I don’t think the word ‘protagonist’ is proper here) and often narrates using her point of view. Usually when this is attempted, it’s clumsy and ham-fisted, and filled with overly flowery prose about connecting to the outside world, or else presents the person as a narrow-minded tabula rasa with no personality, only a long series of ramblings regarding interests in very obscure subjects (I’m looking at you, The Curious Incident of the Dog in the Night-time!) Salander however, is given the full force of a well-developed personality, and while she is presented with savant-like abilities, she is shown to be tormented by them, her photographic memory in particular.

Astrid: Open Letter To My Body

I am autistic. Autism affects the way I perceive stimuli. For example, I tend to be somewhat hypeersensitive to noise. However, my autistic way of perceiving also relates to my internal sensations. When I feel a physical symptom or sensation, I cannot always localize it or describe its intensity. For example, I have dealt with abdominal pain for about three years now, but it took me forever to recognize firstly that it wasn’t normal, and secondly, to localize the pain. Sometimes, I perceive ordinary sensations, such as hunger, as painful. When I deal with pain at the same time, it all adds up and overwhelms me. Overload further impairs my perception of internal and external stimuli by either agravating or diminishing sensation.

BlindGal: My First Accessible Cell Phone

Last week I purchased my first accessible cell phone, and I can’t believe I waited this long. I have been a cell phone user for over 8 years, but not until now have I been able to do anything but make and receive calls. You may be thinking that should be enough, but with all that cell phones can do, I was really paying for features I couldn’t use. I couldn’t even tell who was calling me or if I had messages waiting for me. Thanks to Apple and their commitment to making their products accessible to all their customers, the Iphone 3gs is opening new doors to me.

Forced Migration Review: Disability and Displacement (Free download)

It is not common practice to include people with disabilities among those who are considered as particularly vulnerable in disasters and displacement and who therefore require targeted response – yet statistics tell us that up to 10% of all displaced people will have a disability.

The 27 feature theme articles in this issue of FMR show why disabled people who are displaced need particular consideration and highlight some of the initiatives taken (locally and at the global level) to change thinking and practices so that their vulnerability is recognised, their voices heard – and responses made inclusive.

At Access Tourism NZ: Colombia Nears Goal to Become World’s First Country with Accessible Bus Rapid Transit Service in Every Major City While NZ Lags

The June 201 Access Exchange Newsletter reports that Colombia is amongst world leaders in providing Accessible Bus Rapid Transit services for people with disabilities (PwDs). Meanwhile in New Zealand, The NZ Tourism Guide (one of our largest tourism guide websites) advises that “most urban transport buses are not equipped to cater for the disabled.”

“If the world’s megacities are to be livable places in years to come, the Colombian approach to public transit is likely to be a big part of the solution. Access to Bus Rapid Transit (BRT) by passengers with disabilities, which means better access for everybody, is a cutting edge feature of this solution” says Tom Rickert of Access Exchange International

New Straights Times: Magazine took away my date (via email)

I wish to highlight an incident where a disabled person was discriminated against.

Anti-Rec (although some points for actually talking to blind people when developing the show): DVR Playground: Setting his sights on a new challenge, Christopher Gorham Talks COVERT AFFAIRS

Actor Christopher Gorham relishes a challenge.

Or at least that’s the distinct impression one walks away with following some time spent with the actor on a recent visit to the set of COVERT AFFAIRS, USA’s latest summer series in which he plays blind CIA operative Auggie Anderson.

Exciting and daunting. Particularly when one takes into account the added responsibility Gorham signed up for which has the actor putting a very public face a blind/visually impaired minority that unfortunately gets little to no exposure on primetime television. A responsibility that not surprisingly is not the least bit lost on the well spoken actor.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading[@]disabledfeminists[.]com

What a Lovely Surprise

I was recently reminded of the importance of noticing, appreciating, and celebrating “good disability moments” – those times when someone responds to me or treats me in a non-ableist way. This is more than the lack of discrimination or oppression, this is someone treating me as I want to be treated. Although these moments aren’t as routine as I would like them to be, they certainly come along, and I think it’s important to remind myself that not everyone will respond to my disability negatively or with fear or anger. Another side benefit is demonstrating how easy it is for people to act with compassion and caring on disability issues.

I read a post at Rolling Around that highlighted a recent “good moment”:

A Wheel-trans driver just came to pick up one of our members (a bit late, but understandable). While loading the member onto the bus, this driver took the opportunity to have a conversation with our member (she didn’t even realize that I was there). This member has a profound disability, he’s also blind and can’t answer back verbally. She spoke to him with kindness throughout the loading procedure, reassuring him he was going home, letting him know what she was doing and she was joking around with him. This driver has a huge heart and smile and made sure that no matter how stressed she was feeling due to traffic, she didn’t let that ruin someone else’s day. Too often people with disabilities are passed off and are not seen as “normal human beings” that have emotions and feelings. It’s a wonderful thing to see it when someone takes time out of their day to talk to members, be friendly, maintain professionalism and make someone smile with such a simple act of kindness.

I recently had a “good moment” of my own. I was at work, eating lunch with a few of my co-worker friends, people who know my disability status and whom I trust enough to feel comfortable discussing my disability issues. I mentioned how I had seen a lot of recent articles about lithium mining, spurred by the recent discovery of huge lithium deposits in Afghanistan, which prompted lots of articles analyzing lithium mining industries in Bolivia, and so on. I laughed that every time I see one of these articles, I have to consciously remind myself that the lithium they’re getting is to use in electronics and industry and that it isn’t being mined for pharmaceutical reasons. Partway through the story, I realized that one of my newer co-workers was sitting with us and remembered that I had not discussed my disability status with her, so continuing my story would basically be outing myself to her, but I was so far into it I couldn’t stop without also calling attention to my disability status. So I plunged ahead, saying that my reaction to those headlines is always to think “I don’t need that many pills! You all can stop mining the stuff now! I’m all set! Thanks!”

New co-worker laughed at the punchline and then the conversation moved on to other things. She didn’t stop the conversation to say, “wait, you’re on lithium? Isn’t that for crazy people?” or any other questions. She didn’t ask me what I take it for. She didn’t ask me anything, in fact, but continued to chat and laugh with me and the others with absolutely no change or shift at all. Since then, she’s continued to treat me exactly the same as before – griping about World Cup officiating, wondering if the A/C in our office will ever work reliably – and hasn’t mentioned or questioned my disability issues at all.

It is difficult to say how much this means to me. The ability to talk about myself, to share those jokes, without encountering negativity, curiosity, or even stares, made me feel like my disability did not set me apart from the group. That mentioning my medication in that context was equally mundane and non-notable as mentioning I have a cat, or drive a Honda, or don’t like beets. It was the feeling of acceptance. Of equality. And it was amazing.

Recommended Reading for July 14

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Via Delicious:

RMJ at Bitch Magazine Blog: TelevIsm: Ableism, Appropriation, and United States of Tara

There are a lot of things that USOT does with its conceptual portrayal of disability that I like as a woman with disabilities. The producers did a lot of research—they consulted and worked with a DID specialist. In my [subjective] reading, main character Tara’s disability is not framed as a tragedy or particularly pitiable. It’s something that she lives with, and in my reading of the first season it’s explicitly used as a tool to cope with the repercussions of trauma. It’s something that she and her family work with and through on a day-to-day basis. She rejects medication that would “cure” her, reflecting the complexity of making decisions about medical care and pills. She experiences discrimination, and often argues against it.

But the show’s depiction of disability is inherently problematic because while it’s somewhat relatable, it’s not normalized. The point of the show is “look at this woman with multiple extra-wacky personae! Isn’t that hilarious and crazy and weird?” Furthermore, Tara’s form of DID is representative of only about 5% of all DID cases—instead of normalizing DID, the producers have chosen the most sensational form of the disorder.

RMJ at Deeply Problematic: Disability is Relevant to Feminism Part Infinity: Study Shows that Long-Lived Women have higher rates of disability:

Disability is naturally ocurring, and not something to be eliminated. But when women experience disability at disproportionate rates, it is indicative not of a wide variety of different human experiences and bodies. It’s indicative of sexist demands placed on women’s bodies throughout our lifetime.

Blogs:

terajk has done up another thorough transcript at Transcripts for Everyone: Transcript of interview with Neli Latson’s mother

This is a transcript of Nicole Flamer’s (of “You Aut to Know!” on Blogtalk Radio) interview with Lisa Alexander, whose autistic son Neli Latson was arrested after being harassed by the police.

Maria at the Hathor Legacy: WISCON 34: Activism: When to Speak Up, When to Let it Go

BCH pointed out that it’s sometimes easier to engage when you’re not seen as personally invested, and also said it’s good to know exactly what your rights are. The BUST card from the ACLU is useful for this. CTJ said she needed to ask herself the following: “Do I feel safe? Do I have backup? Will they listen? Is there someone nearby for whom I want to set a good example? I’ll only try to teach a pig to sing if there’s someone nearby who might find that song useful.”

Nebby at Hopeful Nebula: On Erasure in the Eureka Season 4 Premier SPOILERS!

So, just watched Eureka 4.01 “Founders Day.” Loved it, right up until the last few minutes.

Jedifreac at Racebending: Tinkerbell’s Amazing Ethnic Friends

So if when animated characters are made flesh, they become real, then what does it mean when an animated character with indigenous ethnicity and an anorak–one of the very few animated female heroines to ever be depicted with dark skin–is transferred into the real world, but looks and is portrayed by someone who is white?

At Racebending.com we hear a lot about what this might mean from an adult perspective, ranging from “racism” to “cultural appropriation” to “nothing to get your panties in a twist over.”

But I want to know what it means to a kid. Because children notice skin color. And they quickly notice, from observing how adults treat one another, that skin color clearly matters.

Alias-sqbr: A question for people who use image descriptions (Comments are of interest)

I always try and add alt tags, descriptions, and (when relevant) transcripts to my images. But I thought it was worth checking to see if anyone who uses these things (because of visual impairments, text-only browsing, speaking English as a second language etc) has any preferences for me doing them differently (and thus I ask here, where I post my art, rather than at my Serious Business journal). If I’m going to do them I might as well make them as useful as possible.

I guess my main questions are…

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading[@]disabledfeminists[.]com

Recommended Reading for July 13, 2010

Problem Chylde at Feministe: Storytelling as a Radical Act

They won’t speak out for fear of losing something: losing a relative, losing control of their lives, or losing their stories. To them, it’s not a myth that their stories will be repeated without their names to guide them. Anyone can pick up a textbook and read case studies about H, a 26-year-old African-American woman from X with cerebral palsy, or see pictures of happy smiling children online referred to as “happy smiling children in the Y mountains/Z desert/Q farmland.” These people — their bodies, their plight, their stories — are Other. No names in the street, in the book, in the mind, and people only recently have been asking why they are nameless.

Jeannine Stein, Los Angeles Times: Movement therapies may reduce chronic pain

Movement-based therapies such as yoga, tai chi, qigong and more mainstream forms of exercise are gaining acceptance in the world of chronic pain management. Many pain clinics and integrative medicine centers now offer movement-based therapy for pain caused by cancer and cancer treatments, rheumatoid arthritis, fibromyalgia, multiple sclerosis, and other diseases and conditions.

lisa at Sociological Images: Norms, Normality and Normativity

Sociologists distinguish between the terms “norm,” “normal,” and “normative.”

The norm refers to what is common or frequent.  For example, for Christian Americans, celebrating Christmas is the norm.

Normal is opposed to abnormal.  Even though celebrating Christmas is the norm, it is not abnormal to celebrate Hanukkah.  To celebrate Hanukkah is perfectly normal.

In contrast to both of these, normative refers to a morally-endorsed ideal. . .

Wheelchair Dancer: Equivalencies:Days 2 and 3

We use equivalent to suggest that two separate and often very different things are the same, or, at least, of equal value. But the very insistence on equivalence underscores the potential for the thing that is being compared to be somehow less than the original. Rather than “same but different,” it’s more “different but same.” My mind jumps to “separate but equal.”

Event: Hundreds to gather at Nathan Phillips Square on July 20th at the 7th annual disability pride celebration in Toronto

TORONTO—To mark the 7th annual disability pride celebration in Toronto, Simply People: Celebrating Our Lives & Identities, hundreds will gather at Nathan Phillips Square on July 20th from 5:00PM to 8:00PM. This free outdoor event is open for all to attend (rain or shine).

On stage, there will be several guest speakers, along with performances by singers Joel Martin and Serena Pryne, humorist Libby Thaw, writer Carol Krause and the bands Symphony of Nine and Ordain. There will be a number of display tables setup by organizations/groups to provide information about their products/services.

“Our vision is to bring as many people together to celebrate our lives and identities in an inclusive environment of positive synergies and attitudes of being proud,” says Uzma Khan, a founder of this annual event.

One of this year’s guest speakers will include John Rae, the first Vice-President of the Alliance for Equality of Blind Canadians. He will be discussing the progression of the disability rights movement and his 30+ years of advocacy work.

“Canada’s ratification of the UN Convention on the Rights of Persons with Disabilities provides rights holders and their allies a new tool to remove barriers and expand opportunities for all Canadians with disabilities,” says Mr. Rae.

This event is brought to you by Canada-Wide Accessibility for Post-Secondary Students (CANWAPSS) and friends of CANWAPSS, including LinkUp Employment Services, Abilities Arts Festival, VoicePrint, Easter Seals Canada (Access 2 Entertainment), diversityworX and Scadding Court Community Centre.

ASL interpretation, attendant care and transcription services will be available onsite.

For more information about this event, please e-mail the organizers at info@disabilitypride.ca or visit Disability Pride. Join our Facebook group at Simply People – Disability Pride Celebration in Toronto.

What Does it Mean to Get Better?

A few weeks ago, I read an absolutely marvelous post by Wheelchair Dancer, a letter to a TAB friend explaining why her approach to recovery and improvement was so different than theirs. It stemmed from an incident where the friend was “enthusiastic about how much better I seemed” and Wheelchair Dancer was unable to respond in the same way as her friend. She talks about how her improvements are not permanent, how she lives “in a cycle of event, recovery, plateau, and event.  Sometimes, the recovery is actually an ‘advance or an improvement.’  But often, I struggle to get back where I was before.  So, I don’t attach any great meaning or significance to recovery.  I simply can’t.”

She talks about how she works on her body not because she is intent on achieving a cure or focused on “recovery,” but “because it give me great pleasure to do so.  I am so excited to see what it can do, to push it to its limits.” And how that work is not part of a drive “to work for total healing and cure because I have come to understand a different politics of the body, one in which there is neither cure nor giving up.”

I have been sitting with this since I read the post, and I believe these ideas have immense power for me. While my illness is of the mind, not the body, I think the idea of defining for myself what “getting better” means, what goals I am trying to achieve with my treatment and medications, how I understand my own cycles of event, recovery, plateau, and event, is crucial to reclaiming my agency.

When I first got sick, I had a very different idea of what getting better meant. I was so overwhelmed with suicidality and self-harm that my idea of ‘better’ was any situation in which I felt in control of whether or not I was going to harm myself seriously. I didn’t feel safe in my own presence – I relied on watchers, babysitters, overseers –  and wanted nothing that to be able to be with myself without fear. Once I achieved that (thanks, Effexor!), my next idea of getting better was to get rid of the tension and energy that would overwhelm my body periodically, forcing me to pace the halls, back and forth, back and forth, for hours on end, even while my body groaned with exhaustion.

A few years later, my conception of getting better had shifted completely. In my mind, getting better would mean I didn’t have to take those hateful pills every single day, would cut the tether between me and that prescription bottle. It would mean I didn’t have to have yet another first appointment with a psychiatrist where I rattled off my litany of trauma and despair. It would mean I never again worried about what thoughts would come to mind if i saw an x-acto knife or a pack of razor blades. It would mean I could put it all away, be cured, be sane, be normal, be like everyone else.

Pursuing that idea of getting better caused me significant harm. (In short: taking myself off all my meds all at once with no psychiatric supervision and dropping all therapy and counseling while moving across the country to a place where I had virtually no support system turned out not to be the best thing for me, and it took me about a year to pull out of the hole I dug for myself.) That idea of getting better was incompatible with my first conception of improvement – not being constantly buffeted by the desire to die and the periodic storms of energy that made me feel like a puppet dancing on the end of a string controlled by someone else. And when it comes down to prioritizing conceptions of improvement, I will always pick “not dead.”

Today, my idea of getting better has evolved significantly. It has nothing to do with taking pills or not taking pills, it does not insist on or exclude any methods of treatment. It is focused instead on me – can I do the things I want to do? Do I feel safe? And it relies on some things I’ve observed about myself and my friends with disabilities and the qualities that make me feel confident about our abilities to weather crisis events, to come through the other side and keep moving through that cycle of event, recovery, plateau, and event. There are three qualities I think are essential: 1) the ability to know myself and my illness well enough that I know when things are starting to go wrong, when crisis is approaching, 2) knowing what things can help ameliorate or prevent crisis for me personally, and 3) being able to ask for help and having meaningful help available. With those things, I know I can move through the cycle of crisis. It does not mean I can avoid crisis – I no longer think avoiding crisis is an essential component of “getting better.” I now think my ability to survivie crisis and move through it and beyond it is what it means to get better.

Which means, of course, that I am better. I’ve done it. I’ve achieved my vision. And that is worth more to me than I can ever say. And that is the power of taking agency over these ideas, of defining the term for myself. (And only for myself – I do not believe I have the ability or right to define what ‘getting better’ means for anyone else.)

(Again, thanks to Wheelchair Dancer for such an amazing post on this, which I recommend you click through to read in its entirety.)

Recommended Reading for 12 July 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

BBC News: Families with disabled children ‘struggle to pay bills’

Srabani Sen, chief executive of Contact a Family, said: “Many families with disabled children are in financial dire straits.

“Everyone has been hit hard by the recession but families with disabled children were already having to cope with a harsh combination of extra living costs and the difficulty of holding down a job and caring.

“These financial pressures have been worsened by the economic slump and have left many at breaking point.”

Researchers found that 23%, almost one in four, had to turn off their heating to save money and one in seven, 14%, are going without food.

Politics Daily: Thousands of Soldiers Unfit for War Duty

In an unmistakable sign that the Army is struggling with exhaustion after nine years of fighting, combat commanders whose units are headed to Afghanistan increasingly choose to leave behind soldiers who can no longer perform, putting additional strain on those who still can.

The growing pool of “non-deployable” soldiers make up roughly 10 percent of the 116,423 active-duty soldiers currently in Iraq and Afghanistan. Thousands more Army reservists and National Guard soldiers are also considered unfit to deploy, a growing burden on an Army that has sworn to care for them as long as needed.

“These 13,000 soldiers, that number’s not going to go away,” said Brig. Gen. Gary Cheek, who heads the Army’s Warrior Transition Command, which oversees the treatment and disposition of unfit soldiers. “If anything, it’s going to get larger as the Army continues the tempo it’s on.

“This is an Army at war.”

Laura Hershey: Some Thoughts about Public Space

I myself am a very noticeable presence in any public venue. I use a power wheelchair which I operate by blowing into a tube. I have more tubes going into my nose, connected to a mechanical ventilator, which pumps air into my lungs as I breathe. At symphony orchestra concerts, during pianissimo passages, I’ve become acutely aware of the mechanical sounds emanating from my respiratory equipment. My self-consciousness has sometimes veered close to embarrassment, but I’ve reminded myself that I have as much right as anyone to be in the presence of that great music.

Change.org’s Environment blog: Going Under For Surgery? Doctors May Be Going Green Too

So I’m all for rooting out the last vestiges of wasteful carbon from every last corner of our society. But, I have to say, this study makes me slightly nervous. “Going under” is a dangerous procedure, and I’m not sure I want my doctor thinking about the fate of the planet at a time he should be focused solely on my own fate.

Now, obviously the doctors themselves were quick to say that patient safety should and will always come first when choosing the correct drug. But, regardless, doctors who are concerned about the environment would want to know this information, they contend.

SPOUSE CALLS: Born on the 4th of July

In the headline there was no name, just a number: “1000th GI killed in Afghanistan.” I skimmed the story: Name not yet released pending notification of next of kin.

Numeric milestones seem so arbitrary. What makes 1000 more significant than 999? Mourning families don’t care about the math.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading[@]disabledfeminists[.]com