Category Archives: Uncategorized

How Stigma Undermines Good Policies

There is sometimes significant pushback to talking about negative attitudes towards disabilities and PWDs. Those discussion are sometimes criticized for being too abstract, too removed from any practical effects on actual people. Sometimes people suggest that we focus instead on concrete policies and procedures that protect the rights of PWDs, so that tricky decisions aren’t left up to people who may act based on stigma.

As a policy wonk, though, I know that the best policy is only as good as its implementation. And if policy implementation and enforcement is in the hands of people with negative or uninformed attitudes towards PWDs, even amazing, sensitive, and nuanced policies will still lead to awful and horrific results.

For an easy example, imagine a company with a policy that required that  all newly hired employees be informed about their right to workplace accommodations for mental or physical disabilities.  The company works with disability rights groups to create a pamphlet outlining who is eligible for accommodations, what potential accommodations may be available, and the procedure for requesting accommodations and documenting a need for them. The disability rights groups make sure all the information is correct, that the pamphlet is available in alternative formats so it’s accessible, and that it emphasizes that accommodations are an employee’s right, rather than a bonus provided by the company. It is, in short, the perfect pamphlet.

Now imagine how much depends on the person who hands that pamphlet to the new employee. Take one scenario: the employee goes through a complete orientation and then is asked to wait in the lobby. When the employee asks why, the receptionist sighs “oh, it’s some stupid thing required by company policy. Just wait.” After 15 minutes, the designated human resources staffer comes out and thrusts the pamphlet at the employee, saying “Here, take this. It’s something I have to give you for policy. You have to sign here to show that I gave it to you.” When the employee asks what the pamphlet is about, the staffer replies “Oh something we have to do for disability, or whatever. Nobody is ever stupid enough to ask for any of these things, believe me.”

Compare that situation to one in which the employee sits with a single staffer to review all the new employee paperwork. At the end, the staffer says “There’s one more policy to review, and this one is especially important to our company. We place a high priority on accommodating employees with disabilities. Even if you don’t identify as someone with a disability, I want to review this with you so you can see how we ensure that employees with disabilities are equal players in our team. You might notice some employees with special equipment or who seem to have different schedules or other differences. This explains why we’ve provided these accommodations and why they’re not ‘special,’ but are important requirements for us to make sure that we accommodate and retain employees with disabilities.”

Exact same policy. Drastically different implementation that will certainly lead to drastically different effects on the individual employee in terms of willingness to identify as a PWD, request necessary accommodations, and their expectation of how the company will work with them on accommodation issues. I’d imagine that an employee in the first scenario might not ever request an accommodation for fear of being seen as a trouble-maker or someone trying to get “special rights,” or might have to go to a government agency or private attorney to actually enforce accommodation rights.

And those are the problems that can arise when attitudes and stigma complicate implementation of the actual policy as written – in both those examples, the new employee was actually given the pamphlet as part of the hiring process. What’s more troubling is when attitudes and assumptions lead to the policy not being implemented at all. There was a recent example of this with the United States Transportation Security Administration (TSA). As has been discussed extensively on this site and elsewhere, security theatre has resulted in implementation of all kinds of intrusive and extensive checks and searches of people flying commercial airlines. This is what happened last year in Philadelphia:

Ryan was taking his first flight, to Walt Disney World, for his fourth birthday. The boy is developmentally delayed, one of the effects of being born 16 weeks prematurely. His ankles are malformed and his legs have low muscle tone. In March he was just starting to walk.

Mid-morning on March 19, his parents wheeled his stroller to the TSA security point, a couple of hours before their Southwest Airlines flight was to depart. The boy’s father broke down the stroller and put it on the conveyor belt as [his mother] walked Ryan through the metal detector.

The alarm went off. The screener told them to take off the boy’s braces. The [parents] were dumbfounded. “I told them he can’t walk without them on his own,” [his father] said. “He said, ‘He’ll need to take them off.’ ” Ryan’s mother offered to walk him through the detector after they removed the braces, which are custom-made of metal and hardened plastic. No, the screener replied. The boy had to walk on his own.

The TSA policy is extremely clear about how to screen PWDs who use mobility aids such as braces:

  • Security Officers will need to see and touch your prosthetic device, cast or support brace as part of the screening process.
  • Security Officers will not ask nor require you to remove your prosthetic device, cast, or support brace.
  • During the screening process, please do not remove or offer to remove your prosthetic device.
  • The Security Officer will describe the explosive trace sampling procedure in advance to help you along with the process.
  • The explosive trace sampling process may require you to lift or raise some of your clothing in order to obtain the explosive trace sample. (Sampling areas can be accessed by you lifting your pant leg or shirtsleeve or by raising your skirt to knee-level.)

In this case, the attitude of the individual employees staffing the TSA checkpoint in the airport clearly trumped the policy. The parents of the PWD had no choice to comply or not be allowed onto their plane. When they complained to the TSA supervisor on site, they were told to “calm down and enjoy [their] vacation.” There are a lot of negative attitudes and assumptions being displayed here: PWD are probably faking and don’t really need their mobility aids; the dignity of PWDs isn’t important and can be overridden for “security concerns,” and enforcing the rights of PWDs is just making an unreasonable fuss.

That’s why it’s important to fight against stigma. Because it matters.

Gender, health, and societal obligation

Kate Harding, writing at Broadsheet:

“If you ask us,” say Glamour editor Cindi Leive and Arianna Huffington, “the next feminist issue is sleep.” Personally, I never would have thought to ask those two what the next feminist issue is, but they make a pretty good case. “Americans are increasingly sleep-deprived, and the sleepiest people are, you guessed it, women. Single working women and working moms with young kids are especially drowsy: They tend to clock in an hour and a half shy of the roughly 7.5-hour minimum the human body needs to function happily and healthfully.” The negative effects of chronic sleep deprivation are well-documented, but that doesn’t inspire enough people to prioritize rest, and women often end up in a vicious cycle of sacrificing sleep in order to do extra work and make sure their domestic duties are fulfilled, causing all of the above to suffer. “Work decisions, relationship challenges, any life situation that requires you to know your own mind — they all require the judgment, problem-solving and creativity that only a rested brain is capable of and are all handled best when you bring to them the creativity and judgment that are enhanced by sleep.”

So many obligations are heaped on the shoulders of women, and it is pretty much impossible to fulfill all of them even if you completely neglect your own needs. Of course, trying to tend to your own needs means even fewer of those obligations fulfilled, and there are cries and admonishment of selfishness and failure and responsibility to others waiting for you should you assert your right to self-care, because by asserting the right to take time and energy exclusively for yourself, you are stealing time and energy that belongs to others.

Sleep is a contested act in American society (perhaps in others too, but I can only speak to the US): getting little of it becomes a point of pride; getting a lot of it is a symbol of laziness, selfishness, sloth, dirtiness, carelessness. People are expected to perform amazing tasks on as little sleep as possible, which is completely counterintuitive, because most people are going to perform worse with insufficient sleep — consider it a generalized manifestation of the supercrip phenomenon: exactly the people who are least supported/enabled to do something are the ones who are expected to do it better than normal people.

Better sleep would surely benefit many of us, but why?

According to Leive and Huffington, the main benefits realized are in service of others; the main beneficiaries are the people around you. Or, if you see the benefits, they are benefits that stem from an obligation to others, any self-benefit remaining firmly subordinate to the “greater good” of one’s family, colleagues and community members.

We should be well familiar with the concept of women as public property. Women’s bodies, women’s time, women’s possessions, women’s decisionmaking capacity, women’s self-determination — just about anything a woman possesses, though she doesn’t really possess. Rather, she is allowed use of something that is under her care but not her ownership: it belongs instead to the people around her.

Feminists are familiar with the idea that our society considers female reproductive organs to be public property. A woman’s vagina should be available for all comers (men), and simultaneously be unavailable so as not to waste its value to its eventual sole owner (a man). A woman’s uterus is to be used for the good of the human species/civilized society: the right kind of women are to reproduce as much as possible, so that their kind remain the dominant group in both pure numbers and in overall power. (On the other hand, the other kinds of women are called upon to perform the rough, menial work necessary to uphold modern society, while not polluting the human species by reproducing themselves.)

But honestly, public ownership of women extends so much further than their reproductive systems.

No woman is allowed to assume ownership of any part her physical self, her time or purpose: it is still an “indulgence” for a woman to eat anything more substantial than a leaf of lettuce, still “sinful” to enjoy less than 100 calories of overprocessed puddings and crackers. It is still somehow selfish to take a long bath or to sit and rest for an hour’s time, still slothful to refrain from moving, working, pushing, rushing every single moment of every day.

Women’s work, in general, is under-valued and un(der)paid — and it is uncompensated precisely because women’s time, their energy, their effort, do not actually belong to the women themselves, but rather to the rest of the world. It is theirs to use whenever, however, and however much they wish, and isn’t it ridiculous to suggest they should pay for the use of something that belongs to them in the first place?

This is all part and parcel of living in a patriarchy, a predictable result when society relies upon a person’s gender to determine hir position in society, the things sie will do, the roles sie will play, the direction hir life will take. But gender is not the only variant in play here. In fact, I believe that gender is actually secondary here to another factor — it is merely one avenue of manifestation for our cultural construction of health.

Surely you have heard of the theory that gender is not an inherent trait, but a performance. This theory is definitely not without flaws, but I bring it up in hopes that it provides a familiar framework for a discussion on the social construction of health.

Health, you see, is not merely an inherent trait. Health, instead, emcompasses a variety of factors, including a person’s intrinsic qualities but also the environment in which they operate and their everyday behaviors.

Health is not just what a person is. Health is also what a person does. And what drives a person to do something is not wholly internal, but rather is largely influenced by external factors.

Gender, for instance, is both an internal sense of being and something we do for other people, something we do because we want other people to think about us, react to us, in certain ways. And the things we do, and the expected reactions to them, are different depending on which culture we are operating in — dependent on where we live, on our ethnicity, on our class background, on any number of other things. What it means to wear certain types of clothing is different in different cultures. What it means to speak a certain way is different in different cultures. And so on.

This framework is — I hope — useful for understanding what health actually is.

The form “health” takes is different depending on the expectations of the culture you live in.

The ultimate importance of that so-defined “health” is different depending on the expectations of the culture you live in.

The role “health” plays in the culture, what “health” means in that culture, the way the people of that culture interact or engage with that idea of “health,” are different depending on the expectations of the culture you live in.

What you do to achieve “health” is different depending on the expectations of the culture you live in.

How your health affects your position in life, your economic opportunities, the support that is offered for you to live the kind of life you desire, are all different depending on the expectations of the culture you live in.

(And yes, all of this is just as true in a culture that makes use of the scientific method and sees itself as cool and rational. What is investigated, and how, and how the results are interpreted, and what lessons are drawn from those results, and how those lessons are applied in everyday life — all these things must grow out of the culture they happen in! )

Health, then, is not merely a personal state, but rather a cultural fulfillment. Health (of whatever kind) is expected of you, expected by the people around you. Your health is not your own, but instead belongs to your family, your community and your wider culture. You must achieve and maintain (whatever kind of) health, not because it benefits you personally, but because you will have deeply failed your fellow members of society if you don’t.

And this is what underlies the problematic aspect of Leive and Huffington’s statements. They are not suggesting that the sleep deficit for women is a problem because the woman herself feels fatigue or cognitive dysfunction. They are suggesting that the sleep deficit for women is a problem because the woman cannot fulfill the expectations of health — and the performance of duties that rely on that state of health — that society has for her. They are suggesting that the sleep deficit for women is a problem because then that woman personally fails her family, community and country.

Here, then, her lack of sleep lays bare her duty to society based on particular qualities she holds. But the disparity between her duty and her male peer’s duty would not exist if all of us did not have a duty to society to achieve and maintain a certain kind of health.

And Leive and Huffington, purporting to be advocating on women’s behalf, do nothing but reinforce the same system that screws women disproportionately when they center a woman’s obligations to the people around her over the personal experience of the woman herself.

And here, I hope, feminists will understand what disability activists mean when we talk about the supposed obligation of mentally ill people to submit to (certain kinds of) treatment for the sake of the rest of society — or what fat acceptance activists mean when we talk about the supposed obligation of all people to be as thin as possible for the sake of the rest of society — and so on.

Eating “healthy” (as determined by mainstream cultural wisdom, largely controlled by wealthy white temporarily-abled folk) is not done solely for oneself. Neither is “exercise” (of course, what counts as physical-activity-that-improves-health is controlled by the same people who control what counts as food-that-improves-health). Participation in the paid workforce is not done solely for oneself — we are, in part, fulfilling the obligation of “responsibility” (which is a component of the health performance, because when health is lacking, the ability to work declines — so work, then, is a demonstration that you are fulfilling your health obligation).

When a person neglects to fill a health-related obligation, there is someone there to remind them of the cost to the rest of society. We’ve all heard figures on the cost of obesity, the cost of heart problems, the cost of low employment rates, the cost of suboptimal nutrition, the cost of insufficient sexual education, the cost of lost sleep… wait, that sounds familiar. Anyway, the cost might be in dollar figures, might be in time lost, might be in persons participating in x activity, or might be more intangible: work decisions, relationship challenges, judgment, problem-solving, creativity… wait a second, didn’t we just hear that? Oh yeah.

And that’s what’s wrong with this angle. Ladies, you are hurting your families! You are failing your communities! You’re dragging all of society down with you! When all you have to do is get an extra hour of sleep — seriously, how selfish are you, staying up to get the dishes clean after your kids have gone to bed so that they’ll have clean bowls to eat cereal out of in the morning?

Except that the entire reason women are getting less sleep than they need is because they’re busy fulfilling their obligations to the rest of the world. The entire reason women are getting less sleep than they need is because they’re required to be well enough to handle multiple shifts, every single day, for their entire adult lives. The entire reason women are getting less sleep than they need is because they’re required to get up at stupid o’clock every morning to handle all the things they’re required to do before going to work (including the obligations to project an image of “health” — to look and smell fresh and clean, to be sufficiently hair-free, to wear attractive clothing, to possibly spend time putting on a face full of makeup and making her hair look presentable — all which are wrapped up in appearing healthy to the people around you), and when they get home from work they still have to do the laundry and make the dinner and wash the dishes and pick up the floor and wipe down the kitchen and bathroom counters and possibly wrangle kids or partners all the while —

— and then they are getting chided by self-proclaimed women’s advocates because they spend too much time doing things for other people, and not enough time doing things for oneself… for… other people…

And it’s impossible to separate the demands of womanhood from the demands of ability. It’s difficult to differentiate the hierarchy of value imposed on people of different genders from the hierarchy of value imposed on people of differing abilities.

I’m sure you get, by now, how women get completely and utterly screwed in this situation. But I invite you to imagine, then, how disabled people get completely and utterly screwed by this situation — and then I invite you to imagine how a system that did not value people differently due to their differing abilities would also remove a lot of the pressure that is currently dumped on women.

A system of equal access, opportunity, value, for people of all types of abilities, would be radically better for people currently oppressed under this gender-based system.

And when you reinforce the ability-based system of oppression, you make things worse for the women living under it.

… just sayin’.

(Cross-posted at three rivers fog.)

The Opposite of “Disabled” is Not “Employable”

According to the United State government, disability is “the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.” Or, in non-regulatory terms, disability is when a physical or mental impairment will last at least a year and will make someone unable to work. The ability to work is right there in the definition. A person who cannot work is disabled. If that person can work, they are not disabled. Disability and employability are mutually exclusive states of being.

That definition comes from the Social Security Administration and is applied to people applying for disability benefits, basically a wage replacement program to compensate for the salary the person cannot earn – so the focus on employability makes some sense. But more and more, I see this framework for defining and evaluating disability applied outside the benefits context, in deciding if someone is “‘really’ disabled.” It’s also notable that these wage replacement programs are the most commonly known and discussed form of disability-based benefits – while I’m used to seeing articles about how to handle the Supplemental Security Insurance (SSI) program, I rarely see coverage of programs from the Department of Rehabilitations, which provides vocational training and support to PWDs. And the false equivalence of disability and unemployability is problematic for a lot of reasons.

  • There are a whole lot of people with disabilities who are not employed due to problems with the economy and with employers who discriminate against PWDs when hiring or fail to sufficient accommodate PWDs while employed. Assuming that unemployment is due solely to a person’s disability status, rather than systemic stigma and discrimination, places the responsibility for finding and keeping a job solely on the shoulders of the PWD. This shifts focus entirely away from the employers who have ultimate power over whether an individual is going to have a job. Take a look at employment statistics for the federal government itself, where “the severely disabled represent 0.94 percent of the government’s workforce.” And despite those low numbers, the government has no problem telling people that unemployment is a disability issue.
  • When disability is defined as an inability to work, that overlooks an enormous segment of people with disabilities. About 37% of PWDs in the United States are employed – 8,581,869 people. But their ability to work does not negate or erase their disabilities. Those disabilities continue to exist and implying they do not lets employers off the hook for acknowledging and accommodating those disabilities in the workplace. It is already easy for an employer to overlook an informal request for accommodation or demand overbroad access to private medical files to “prove” whether or not the requesting employee “actually” has a disability in response to an accommodation request. It’s impossible to say how many employed PWDs have successfully requested and received needed accommodations relative to those who have been too intimidated to ask or had employers unwilling to fulfill their legal obligation to provide accommodations. But I would venture to guess that it’s quite difficult and involves risk for the individual employee. The stereotype that people who can work are not disabled and do not “really” need or deserve accommodation only encourages this behavior.
  • In our society, employability is often equated with worth and value on a fundamental level. In the current bad economy, lots of people have been losing their jobs, and half of them feel that being unemployed has changed their lives for the worse. Being unemployed is seen as shameful, humiliating, a sort of failure to grow up and develop into a “real person.” Obviously, having “disabled” be seen as a synonym for something with those negative connotations does a disservice to people in both groups.

Do you REALLY trust women?

For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

A blue-purple sunburst in the background, white letters reading "TRUST WOMEN: Blog for Choice Day 2010"

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

  • Older women should not have children because their children are more likely to have a disability
  • Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
  • Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
  • Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
  • Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
  • It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
  • Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
  • Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
  • Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
  • Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
  • To violate those cultural ideas means that you are inherently flawed
  • The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at three rivers fog.)

Edit, Saturday 1/23: I am being very strict in moderating this thread. The primary response from people who do not identify as disabled seems to be “Well, I respect your choice, even though it is clearly cruel and bad/makes me ‘uncomfortable’/is the ‘wrong’ choice.” That is exactly the opposite of what this post is saying. If that is what you got out of this post, you have a LOT of stepping back, listening, and learning left to do.

I’m not asking you to be nice enough not to forcibly prevent us from ever having children, or anyone from ever having disabled children, even as you eagerly stigmatized disabled motherhood/childhood; I am asking you to genuinely examine the deep-rooted prejudices you have been taught and challenge your thinking on childbearing/rearing and disability. I am asking you to question why you have these ideas about disability, and whether they are appropriate to hold as a person committed to social justice. Including for women.

Because, here’s a hint: a lot of us women have disabilities, and all of us were children once, and some of us will have children of our own. And we are still women. Are you really protecting women’s freedom? Or are you merely preserving the temporarily-abled supremacist structure of society, with temporarily abled women as a convenient proxy?

I ask you to consider these prompts, to attempt to truly challenge your assumptions about disability and parenthood. If you aren’t willing to do that, please don’t drop in to explain why disabled women are “Doin It Rong.” Check your privilege. Thanks.

Signal Boost: Leonard Cheshire Disability

Leonard Cheshire Disability : Campaigns Newsletter : Calling allbudding artists, designers and photographers

Calling all budding artists, designers and photographers

Dear Campaigners,

To help launch our Action for Access campaign we are calling on all budding artists, designers and photographers! We want to find new images to help us illustrate the access issues facing disabled people.

The winning entry will win £50 of Amazon vouchers and the design will feature on the Action for Access campaign toolkits. Click here to find out how to enter.

We know from speaking to you that access is an issue that affects everyone. Each day disabled people face barriers to doing everyday activities, like getting to work, shopping, meeting up with friends and family, going out to the cinema or the pub. Action for Access will help to change this through your actions. For more information on how to get involved and start filling out surveys visit [this website].

We would also like to say a massive thank you for all your support in 2009. Your responses to our New Year, New Campaigns survey were essential in ensuring that we are campaigning on the issues that matter to you. Look out for further news on how we will be incorporating your ideas into our future campaigns.

Best wishes, Amy

Campaigns Supporter Engagement Officer

p.s. The Action for Access website will be developing over the next few months so please let us know how you find the site and if there is any other information you would like to see added.

Contact the Policy & Campaigns Team on 020 3242 0373 or email campaigning@LCDisability.org <mailto:campaigning@LCDisability.org>

Signal Boost: Feminism and Mental Health (Call for Submissions)

Feminism and Mental Health (Call for Submissions)

Call for Submissions:

The lived experience(s) of mental health in feminist communities

Call for submissions from people of any gender who identify with feminism and have lived experiences of a psychiatric diagnosis.

Our upcoming anthology, Feminist’s Navigate Mental Health (working title), will explore the complexities of navigating mental health and how a feminist identity may (or may not) shape those experiences, thoughts and feelings. Submissions are welcomed in the form of personal short stories.

The submissions received will shape the outcome of the book. The final manuscript will be submitted to relevant independent publishers.

Possible themes may include (but are not limited to):
o Coping – what works and what doesn’t
o Any positive aspects of your mental health that are commonly considered deficits
o Treatment preferences and past experiences
o Medication
o Personal/lived understandings of your diagnosis (acceptance or rejection)
o Stigma/tension around mental health issues in the feminist community
o Feminism and well-being/strength/empowerment
o Feminism and distress

Guidelines:
o Remember to take care of yourself while writing about topics that may be distressing;
o Good writing skills are great, but not mandatory! We will work with you to edit your piece;
o Submissions should be saved in .doc or .rtf, size 12 font, Arial or Times New Roman, and double spaced;
o 500 to 4000 words
o Include contact information and a brief biography;
o Only email submissions will be accepted;
o Submission deadline is June 1st, 2010.

Who we are
The women behind this project are Jenna MacKay and Alicia Merchant. Jenna is a psychiatric survivor and community activist who is particularly interested in violence and mental health. Alicia is a freelance writer and contributing editor for various magazines and has been published in CR Magazine, thirdspace and the Globe & Mail. Both self-identify as feminist, are interested in critical perspectives of health and live in Toronto. This project is not
affiliated with any institution or organization.

Comments, concerns, questions and submissions should be directed to:

fnmhsubmissions@gmail.com

Haiti

As you’re likely aware, an immensely destructive earthquake struck Haiti on January 12, 2010. It was centered in the capital city Port-au-Prince, home to over 2 million residents, and destroyed buildings, food and water systems, hospitals, and seemingly the national government. The information and photos coming out of the country have been disturbing and heartbreaking. The full scope of the damage – to the people, to the country – has yet to be determined, but it is surely catastrophic.

The effect of the disaster on Haitians with disabilities is similarly devastating. Although the earthquake and subsequent building collapses happened so quickly that neither PWD nor TAB had an opportunity to get to safety, conditions after the quake are likely disproportionately difficult for PWDs. The streets are covered in debris and destruction, there is no electricity, and people need to scavenge for any available food and water. Additionally, literally all of the medical facilities in the city were destroyed in the quake, so there is no access to medications, doctors, anything. Even now, four days after the quake, there is extremely limited emergency care in Port-au-Prince, with people traveling 6 hours by car to one of the few undamaged hospitals in the country for emergency surgery.

In addition, there are an untold number of people who are newly disabled due to the catastrophe and its aftermath. Most of the injuries are open compound fractures, where broken bones have penetrated the skin. These require immediate surgery to re-set the bone and close the wound to prevent infection – which injured patients haven’t been able to get. These people haven’t gotten food and water, much less antibiotics.

Dr. Jennifer Ashton reported that “most of these patients have not eaten in three days. They are profoundly dehydrated and they have crush injuries to their long limbs, upper arms, body and, in some cases, open pelvic fractures, which set the scene for some very serious and life-threatening infection. In addition, when limbs get crushed like that, if they don’t have surgical management immediately, they risk losing that limb as the swelling and infection really take off and that’s what we’re seeing.” Ann Curry reported that desperate doctors were performing surgery on injured children without anesthetics. It is also likely that a number of survivors will develop Post Traumatic Stress Disorder. After the tsunami of 2004, PTSD rates averaged about 10% in the population.

It’s important to note that not everyone injured in the quake is subject to these conditions. American citizens were evacuated by U.S. Air Force planes and other chartered planes to be treated in United States hospitals. This Anchorage woman had her lower right leg crushed by rubble and was then evacuated to a hospital in Miami, where her foot was amputated. These conditions are affecting people without the money or resources to get adequate care. And they are exacerbated by the poverty and unstable infrastructure that existed prior to the quake. (Which the U.S. and France and other colonial powers created and sustained, but that’s more than I can get into with this post.)

It is easy to feel overwhelmed by this, but there are things you can do to help:

FINANCIAL DONATIONS

  • Portlight Strategies, Inc. focuses on Haitians with disabilities. It works with a community of Catholic nuns who will be opening shelters in Port-au-Prince for PWDs, and donated funds will go to “defray shipping costs of medical and clinical equipment … and for the purchase of food and other shelter supplies.”
  • Healing Hands for Haiti has been providing prosthetic and orthodic services and supplies to Haitians with disabilities since 1998 and will be deploying staff and equipment to help PWDs.
  • Christian Blind Mission, an organization focused on PWDs in the developing world, partners with local organizations in a number of medical facilities throughout Haiti. Donations will “support its Partners in the affected area with emergency assistance and long-term rehabilitation and reconstruction efforts.”

IN-KIND DONATIONS

  • Aid for AIDS is collecting medical supplies, including unused medications. They are especially interested in antiretrovirals to help Haitians with AIDS whose treatment has been interrupted by the disaster. There are drop-off points throughout the US, or you can send them to Aid for AIDS at 120 Wall Street, 26 Floor
    New York, N.Y. 10005.
  • Partners in Health is also seeking donations of these specific items: “need specific items urgently:  orthopedic supplies, surgical consumables (sutures, bandages, non-powdered sterile gloves, syringes, etc), blankets, tents, satellite phones with minutes, and large unopened boxes of medications. No small quantities or unused personal medications will be accepted.

Please also remember to take care of yourself during this time. It’s been easy for me to spend hours reading articles, looking at photos, watching footage, and feeling increasingly overwhelmed and helpless. Don’t lose track of your own health and well being.

Crossing My Fingers For The Future

I’m a letter writer. (Not in the wonderful personal-letter sense, much to my personal sadness, but in the “trying to accomplish something through quietly angry letter-writing” sense.) I write a lot of letters about disability & accessibility issues, to people like doctors who think every appointment is Show & Tell Disability Hour, to allegedly accessible transportation providers, to people who insist that they can’t be accessible because they’ll lose their historic plaque (a lie)… You know, letters. Sometimes these letters are effective, but I don’t feel much shock to tell you that I rarely get responses to them.

One of the reasons I write letters, though, is to hold people accountable.

Earlier this school year for me, I was personally assured by the president of my university that they took issues of disability & accessibility very seriously on my campus. This is, of course, utter shite. The meet & greet for my discipline was down a flight of stairs and then up another set of stairs, and they told me that anyone in a wheelchair could be carried in. I’ve been told by the Accessibility Center that they can only deal with students with disabilities directly – I can’t go to them as a student and get help making an event accessible if I’m not registered with them as a student with a disability. And, of course, I get the same responses when I talk to people: incomprehension and stares.

Today, I got an email from the Graduate Studies Office at my university, directing me towards a website for a– Actually, I don’t know. Here’s part of the email:

This conference is a chance to join some of Atlantic Canada’s leaders and youth activists to shape the future of [our university] and your faculties. For more information or to register, visit brainsforchange.ca. Registration deadline is Friday, January 15th.

This initiative is being spearheaded by the [University] Student Union, with support from [the University]’s Deans, and senior administration – a truly unprecedented level of interdisciplinary collaboration.

(I don’t know if my university self-googles, hence the redactions there. You can tell where I attend if you click on the link.]

I can’t read the link. Don can’t read the link. I set my screen reader on it, and it can’t even find the content, let alone read the link.

Every one of the groups of people named in the above paragraphs have assured me at some point that my university takes accessibility issues seriously.

So, I am writing another email, because maybe this time it will make a difference. It has a few times in the past. Not often, sadly. But maybe this time it will make a difference?

I would love to learn more about this conference, in order to decide if it appropriate for me to attend. Unfortunately, the website linked is an accessibility nightmare. I can’t even read it. My screen reader can’t read it outloud for me.

University administration and the executive officers of our Student Union keep telling me that disability & accessibility are a priority on campus. I want to believe them, but it becomes difficult when a conference that’s allegedly about engaging students doesn’t even attempt to be accessible to all of them.

I know that whoever gets this email isn’t responsible for the website, and I do believe the university wants to do more and be better about these sorts of issues. Is there any way I can get the information on the website emailed to me so I can look at it? And could you tell me who created the website? I think they should consider consulting with the Accessibility Center about web design in the future.

I’ll keep people posted about it, but I do wonder: Do you write letters about this sort of stuff? The biggest thing I’m told all the damned time is that somehow no one has ever complained before. This, of course, comes with that winning implication, that I’m just a whiner who should shut up.

I don’t think that my letter writing is going to make everything awesome, but I do think it means people may pay more attention to the next complaint.

QuickPress: Book List

I’ve added a new page to the site: Books of Interest.

If you check it out, you’ll notice very quickly that it’s almost all history books at the moment. We’ll fix that over time. I just found that I was procrastinating putting anything up out of fear that it was not the Perfect Ideal Book List Of Awesome.

Now it’s a Work In Progress Book List!