Category Archives: autonomy

What Does it Mean to Get Better?

12 July, 2010autonomy, identity, introspectivegetting betterabby jean

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.)

Film Review: HBO’s “Kevorkian” (2010)

8 July, 2010autonomy, bodies, deaths, media and pop culture, movies, othering, representations, social attitudes, televisionassisted suicide, documentary, jack kevorkian, medical practice, medicineAnnaham

Director Matthew Galkin’s documentary Kevorkian (aired on HBO on June 28th; also available on YouTube; ETA: as codeman38 points out below, the YouTube version is, unfortunately, not closed-captioned) is one of those documentaries that I felt nervous about watching, mostly because I was extremely skeptical that it would be anything other than a massive apologia for the man colloquially known as “Dr. Death” in the U.S. news media and among much of the North American public. I was also concerned that my own complicated views on physician-assisted suicide would impact my feelings on whether this documentary was worth the time and emotional energy spent watching it. Like many documentaries, it is a difficult film to watch. It is not uplifting by any means. Parts of it are brutal. Parts of it are frightening. That said, however, I am ultimately glad that I watched this film — not because it “humanizes” Jack Kevorkian or acts as an apologia, but because it deftly explores issues of ethics, law, the power of the media, and legacy.

The entire film is framed by Kevorkian’s ill-fated 2008 bid for a congressional seat representing the state of Michigan — his platform, as the film shows it, leans heavily on the Ninth Amendment — but his congressional hopes are not the most interesting or thought-provoking part of the film. Almost paradoxically, the most interesting part of this documentary is the fact that Kevorkian does a pretty excellent job of not coming across as particularly sympathetic, something that a viewer might not glean from the film’s trailer.

Here, Kevorkian comes off as one majorly self-aggrandizing guy, and it seems like the director does not have to work very hard to make viewers see that Kevorkian can be difficult to deal with. He often seems so enamored of his own ideas, and his own legacy, that he focuses on these things to the detriment of his friends and allies — and, ultimately, his cause. This becomes most clear in one sequence late in the film, where a longtime supporter of Kevorkian’s publicly disagrees with him at a small town hall-style meeting; Kevorkian responds not by answering the man’s questions regarding the Ninth Amendment, civilly discussing his differences of opinion or why he feels the way that he does, but by yelling at him and then forcefully spitting, “I wish you weren’t here [at this meeting]!” Kevorkian’s behavior during the Thomas Youk case is also ethically questionable, as he videotaped Youk’s death in part with the aim of bringing more publicity and media attention to himself and his cause, even though the videotape would most likely put him (Kevorkian) in prison for murder; as one journalist phrases it, Kevorkian wanted to start a “national debate on [physician-assisted suicide]” by appearing on 60 Minutes with the full tape of Youk’s death. The 60 Minutes footage, both of the Youk tape and Kevorkian’s interview with correspondent Mike Wallace, shown in the film is nothing short of chilling; when Kevorkian intones, “Either they go, or I do,” one may pause to consider that a potential “win” of this particular fight would be built on the bodies of those he has “assisted.”

Unfortunately, no one who opposes Kevorkian’s views on assisted suicide — or his political platform, for that matter (with the exception of the former supporter mentioned above) — gets any screen time whatsoever, and this ends up making the film as a whole seem extremely one-sided. As a viewer, I would have been interested in seeing people who oppose Kevorkian’s method and message, particularly since Kevorkian’s former lawyer simplifies the opposition to him, and physician-assisted suicide in general, by casting any opposition as right-wing religious reactionism versus “enlightenment,” thereby erasing the many disability activists who have criticized Kevorkian and his methods. And while Kevorkian certainly does an admirable job of not coming across as anything other than a guy who overestimates his own importance, or gives any consideration to the reasons why some might oppose his methods or message, the film’s lack of any substantial exploration of opposing view(s) was disappointing.

Despite its flaws, Kevorkian is an interesting, thought-provoking and disturbing documentary. As someone who has complex personal feelings about physician-assisted suicide and its ethics, I am of the opinion that this documentary provides a riveting look at the life of a man whose actions have, for better or worse, managed to galvanize the discussion of physician-assisted suicide, and related issues surrounding medical ethics, the media’s role in medical issues, life, death, and quality of life in the United States.

Commenting Note: This is NOT a thread in which to debate the “rightness” or “wrongness” of physician-assisted suicide in general. Please keep your comments to either the issues discussed here, those brought up by the Kevorkian case/media coverage/related topics, or those illuminated in the film. The entire film is available in 9 parts on YouTube [trigger warning for in-depth discussion of PAS, and accessibility warning for lack of closed-captioning].

Quick Hit: The Horrors of Solitary Confinement

25 June, 2010age, autonomy, justice, mental health, resistanceabby jean

When I first saw this post on the ACLU’s blog about solitary confinement for juvenile girls in criminal detention, I was so horrified that I opened it in a tab and then couldn’t look at it again for several days. When I read through the entire post, I cried. I believe that when the United States takes control of a person, whether in criminal or immigration detention, they take on an obligation to care for that person, or at least not put them in mortal danger. And that is simply not happening. On the contrary, the solitary confinement policies seem to target girls with existing trauma and/or mental health histories for further isolation and victimization.

[Trigger warnings for sexual assault and abuse based on disability.]

In June 2008, the ACLU filed a class action lawsuit challenging inhumane practices at the Brownwood State School, a youth prison in central Texas. Girls at Brownwood are regularly placed in punitive solitary confinement in oppressively cold, concrete cells, that are empty except for a metal slab intended to be used as a bed. Solitary confinement is imposed for minor misbehavior, for self-harm or for expressing a desire to commit self-harm, and can be brief or can last for days, weeks and even months. It’s hard to imagine a more destructive reaction to a child in crisis, but it’s the norm. Unfortunately, these practices are not limited to Brownwood, or Texas, for that matter.

There are currently more than 14,000 girls incarcerated in the United States, a number that has been rapidly increasing in recent decades. Most of these girls are arrested for minor, nonviolent offenses and probation violations. Locked up under the guise of rehabilitation, girls nationwide — the vast majority of whom have been sexually/physically abused — are subjected to punitive solitary confinement, routine strip searches, and other forms of abuse. Meanwhile, they are denied the essential mental health care, education, and social services they need. Far from helping girls cope with the trauma they have suffered, youth prisons’ use of solitary confinement only retraumatizes them and further impedes their rehabilitation.

This is abundantly clear in a recent collection of testimonies from girls imprisoned in Texas juvenile institutions printed by Harper’s magazine this week. On newsstands today, the May 2010 issue features excerpts from ACLU interviews with incarcerated teenage girls. A few noteworthy excerpts include a girl who states that her crying is treated as “problem behavior,” another who was locked in a solitary confinement cell surrounded by her own vomit for over 24 hours, and perhaps even more disturbing, the following testimony from a girl in solitary confinement:

“A staff [member] gave me a pill, and he told me he was going to take me to get my meds. We ended up in this dirty room. It had pipes, buckets—it was dusty, it was nasty. I was like, I want to go to sleep, and he was like, You’re not leaving until we have sex. I didn’t know what to do. I didn’t know to scream, I didn’t know to do none of that stuff. I told him I wasn’t going to lie on that dirty floor, and he was like, Well, just bend over, and so—I didn’t know what he was going to do to me. I don’t know if he could’ve killed me and it would’ve been on the news: We just found a dead teenager at TYC and nobody knows what happened.

— 17-year-old, Marlin Orientation and Assessment Unit

Kids these days! The “Generation Y” panic, privilege, and erasure

7 June, 2010accessibility, age, autonomy, blaming, politics, social attitudes, workableism, chronic pain, disabled youth, education, erasing, higher education, invisibility, labor, mental illness, myths and misconceptions, paid work, personal, privilege, problematic attitudes, right to work, university, we're right here, work, workplace accommodationsAnnaham

Recently, I read this odd article, penned by Judith Warner, in the New York Times–one in a stream of many that detail how excessively awful the current generation of young people (read: young workers) is at putting its collective nose to the grindstone, sucking it up, and generally not acting like a bunch of brats, or something.

Many of us have heard about, or come into contact with, some of these bright young things. They are heralded — or, more commonly, blasted — as naive, entitled, too optimistic, and over-confident. In many of these articles, their numerous faults are listed: They don’t know how to dress professionally! They expect to march into the workplace of their choice and immediately start making a six figure-salary! They think they are perfect! They want praise all of the time! (Does no one who writes these sorts of articles stop to consider that many human beings want praise when they complete a task to the best of their abilities?) They have tattoos, dyed hair, and iPods! EVERYBODY PANIC, because the American workplace is apparently going to be dragged down by Generation Y’s entitlement, narcissism and laziness! This narrative, however, seems to apply mostly to a very specific subset of the population (and even the picture that accompanies the NYT article reinforces this): young, able-bodied, middle to upper-middle class, college-educated white people.

This erases, or conveniently ignores, a hell of a lot of folks who are not young, abled, middle/upper-middle class, and white. It erases young workers who may not have had the “expected” educational opportunities (such as college), or who had to take more than the expected four years to finish their degree, or who did not finish school. It erases people whose parents or family members may not have been quite so “involved” in their education, or in their lives at all. Of course, it also erases young people with disabilities — both those who cannot work, and those who want to work but who may be bumping up against various narratives such as that of the “entitled” Generation Y kid. Some of us have psychological issues or disabilities that put us completely at odds with the “overly-confident” and “entitled” stereotype that apparently befits the current generation — because we cannot stop worrying despite the fact that we are supposed to be totally optimistic and confident all of the time, always thinking that the roads leading to our perfect job will be lined with rainbows, fluffy bunnies, and gold.

Some of us have physical disabilities, chronic pain, or chronic illnesses that prevent us from working 40-hour weeks (or more); asking for accommodations or disclosing our condition(s), we fear, may make us look “entitled,” or like we do not want to put in the time necessary to work our way up — even if this is not the case. The fact is that many people, and many young people, with disabilities are already at a tremendous disadvantage when it comes to the labor market and making a living. Not only are many people with disabilities, at least in the U.S., more likely to face lengthy stretches of unemployment and/or live in poverty regardless of age, but many face additional hostility, discrimination, and unreasonable demands, both in the workplace and from society at large because of their disabilities.

While I am not saying that these over-entitled Generation Y-ers don’t exist (I’ve had run-ins with quite a few of them, myself), I am struck by the fact that the narrative surrounding them is so dependent upon erasing or ignoring certain people whose bodies and experiences do not fit the “expected” attitudes about labor that have been traditionally upheld by American culture. Many of these attitudes, furthermore, rely heavily on binaries that reinforce who “counts” and who does not: You either work full-time, or you’re lazy. You’re willing to be mistreated in the workplace and do whatever it takes “for the job,” or you’re a wimp. Suck it up, or go home. If you’re not making enough money to live on or are poor, you just aren’t working hard enough. If you ask for “accommodations,” you’re asking for too much — just do your job! You have to work hard to “make it,” and if you don’t work hard enough, it’s your fault. If you don’t like your job or face daily mistreatment, you can always quit and find another one, right? But if you can’t, it’s your fault, and why did you quit that job, anyway? These attitudes surrounding work affect people with disabilities in a wide variety of age groups and generational cohorts, and this is a crucial part of why they are so important to critically question and examine.

The message for Generation Y, in general, may be “Get over yourself,” but the message for those who do not fit the characteristics of the “average” Generation Y worker is more severe — and ultimately more dire.

[Cross-posted at ham blog]

An Open Letter to Ms Magazine Blog

7 May, 2010activism, anna rants, autonomy, disability activism, feminism, gender, global, history, i'm right here, identity, intersectionality, invisibility, justice, othering, representations, resistance, social attitudesAnna

Dear Ms Magazine Blog:

My name is Anna. I’m what some people in North America would call a person with a disability, and some people in the UK would call a disabled person. My husband, many of my friends, all of my co-bloggers, and a large number of our commenters are also people with disabilities/disabled people.

Your blogger, Carol King, would instead refer to us as “the disabled”, and as pawns of the religious right. In her blog post Kevorkian and the Right to Choose , she wrote:

The “right-to-lifers” enlisted the disabled in their cause when they cautioned that allowing people to choose to die would soon become their “duty to die.”

I’m pretty angry about that. Not offended, Ms Magazine, angry. You see, I’m really tired of “the disabled” being treated like we’re unthinking masses. I’m especially tired of the feminist movement – you know, one that allegedly wants equal rights for all people, including women with disabilities – doing this. It makes me angry because I’m a feminist as well as a woman as well as a person with a disability as well as someone who is not the pawn of anyone, thank you very much.

Some people with disabilities support the right to die. Others do not. Others do in some cases and not in others. Each of us has come to the conclusions we have because we are reasoning individuals. Gosh, some of us are even feminists who use a feminist lens to come to our decisions, regardless of which of the many places on that particular spectrum of opinion we find ourselves.

People with disabilities deserve better treatment than you have given them. We are not a throw-away line so you can score some sort of points. We are people, and I’m appalled that a feminist blog like Ms would publish something that would treat us as otherwise.

Frankly, I am so fucking tired of this shit. I’m tired of smiling while feminist organisations treat people with disabilities like they’re afterthoughts and problems to be solved. Like we’re just pawns in politics, like we need to be appeased but never spoken to or considered, like we’re too angry or not angry enough, like we have to push this fucking rock of dis/ableism uphill while you – our “sisters” – stand by and politely look away.

Do you remember Beijing, Ms Magazine? You’ve talked about it a lot lately. You know what I know about Beijing? I know the accessibility tent was inaccessible to people with disabilities. [transcript follows]

“We will achieve our rights and the respect we deserve as women with disabilities.” “Because the issues of women with disabilities have often been excluded, the goal this year was to make sure the concerns of disabled women were addressed.” Oh, hell, just watch the whole damned thing – it’s subtitled – and see the commitment feminists made to women with disabilities. Ask yourself, seriously, Ms Magazine, why your new blog has decided not to talk much about women with disabilities. “No woman who attends this conference should be able to leave Beijing without thinking about the rights of women with disabilities.” Do you?

You know what? If that’s something you can’t do, let me sum it up:

Nothing about us without us.

You wanna talk “about” “the disabled”? How about talking to us? How about letting us talk for ourselves?

How about treating us – people with disabilities – the way you would like women like yourselves to be treated? As though we have some understanding of our own experiences, our own opinions, our own thoughts. As though our thoughts do not belong to anyone but ourselves?

As though we are thinking beings?

Again, my name is Anna. I, like you, am a woman, and I am also a person with a disability. And we deserve better from you.

Sincerely,

Anna.

Please note: This thread is meant to be about the continued marginalization of people with disabilities in the Feminist Movement. I won’t be approving any comments about Kevorkian or related discussions.
Continue reading An Open Letter to Ms Magazine Blog →

No, It’s Not As Easy As You Think

1 April, 2010accessibility, autonomy, class issues, disability activism, justice, politics, social attitudes, Uncategorizedabby jean

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

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

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

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

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

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

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

FWD/Forward

FWD (feminists with disabilities) for a way forward

Category Archives: autonomy

What Does it Mean to Get Better?

Quick Hit: The Horrors of Solitary Confinement

Recommended Reading for June 21, 2010

Recommended Reading for May 13, 2010