Tag Archives: community

Recommended Reading for October 6, 2010

RMJ at Deeply Problematic: A feminist reading of Achewood, part one: disability and Roast Beef (trigger warning for discussion of ableist jokes)

Roast Beef’s depression is a major theme of his character and the strip. At the outset of his appearance in the Achewood universe, he expresses the wish to commit suicide repeatedly, though he has not mentioned past his first year in the strip. His actions and words (in a distinctive smaller font) are often explicitly steered by his low opinion of himself; depression is a simple fact of him. While sadness is a constant in his his characterization, the portrayal of his disability is far from static: his emotions are fluid, dependent on context, an advantage at time and a palpable pain at others.

Julia at a l’allure garconniere: cultural appropriation: still refusing to see the truth

rather, it’s that images of models, of clothing catalogues, and of white girls in headdresses at concerts that attack and offend us: those of us who feel like these conversations are important to be having, that we have to ask these questions. i am fed up with it. fed up with seeing “Othered” cultures reduced to shitty stereotypes for uncritical (mostly) white people to buy into, as a product, and then to attack me when i ask them to think about what they are wearing, when i ask them why they choose to wear what they wear. is that such an offensive question? is it really us who are so hypersensitive and who take things “too seriously,” or is it you who just wants to refuse to think for two seconds?

mycultureisnotatrend on Tumblr: I received a flood of angry notes and messages after that last post. . . (trigger warning)

We are multifarious people, and no one native cultural symbol can represent us all. It is impossible to dress like “an Indian” without reverting to stereotype. This does not mean all native related things are off limits. But be wise with your choices, stay away from things of great religious significance, and don’t play “dress up.” Moccassins = okay, Warbonnets = not. The line between the two is grey – use caution and respect if you near it.

Roya Nikkah for the Telegraph (UK): Channel 4 criticized for new reality “freak show”

A recent advertisement in Fame Magazine, a celebrity magazine, seeking recruits for the six-part series said that the show “will place two people who are defined by the way they look … in close proximity to each other”.

It added: “Our participants will get to live together in a specially constructed space. Over a number of days, they will explore each other’s lives in the real world.

“They will be challenged to look beyond the mirror and step into the shoes of someone for whom looks have a completely different meaning.”

Gary Marx and David Jackson for the Los Angeles Times: Pact to decrease number of mentally ill in nursing homes

A Chicago federal judge has approved a landmark agreement that will enable thousands of people with mental illness currently living in nursing homes to move into community settings that experts say are more appropriate and less expensive.

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 at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Florida Court Ruling: Community-based Services, Not Institutionalisation

In 2007, Florida resident Michele Haddad was involved in a motorcycle accident with a drunk driver. She incurred a spinal cord injury that led to quadriplegia, and lived at home until she lost her caregiver and Medicaid informed her that she would only qualify for the services she needed if she spent 60 days in an institution. Aside from making absolutely no sense, as often seems to be the case with Medicaid bureaucracy, this barrier to accessing care was also highly discriminatory.

Haddad sued, arguing that she would suffer ‘irreparable harm‘ by being compelled to enter a nursing home, and the court agreed. The State of Florida was ordered to provide her with the community-based services she requested and was entitled to. Haddad will be getting a caregiver and staying at home, and we can chalk down another victory for disability rights. This is huge and I am really pleased by the positive outcome in this case. Haddad wanted to stay at home, she should have been allowed to stay at home, and it is heartening to read that the court ruled on the side of justice, bodily autonomy, and independence in this case.

The United States Government was also involved in the case, arguing on Haddad’s side. The Justice Department is currently fighting several discrimination cases, many of which build on the landmark Olmstead vs L. C. case that cleared the courts 11 years ago. Speaking about the Haddad case, Thomas E. Perez, Assistant Attorney General for the Civil Rights Division, said:

In the Olmstead case, the court recognized that the unnecessary segregation of individuals with disabilities stigmatizes those individuals as unworthy of participation in community life. By supporting Ms. Haddad in this case, we seek to ensure that individuals with disabilities can receive services in the most integrated setting appropriate, where they can participate in their communities, interact with individuals who do not have disabilities, and make their own day to day choices. (source)

I’m excited to learn that the Department of Justice is cracking down on discrimination and is specifically selecting cases that will promote full integration into society for people with disabilities. As I discussed a few weeks ago, passing antidiscrimination laws and winning victories in court isn’t enough to put a stop to discrimination and ableism, or to the social attitudes that allow for the dehumanisation and abuse of people with disabilities, but these cases do make a difference, and the direct involvement of the government shows that there is a genuine desire to address disability discrimination and to fight it.

Forced institutionalisation, as almost happened to Michele Haddad, has a long and very sordid history in this country. A common problem that I encounter in discussions about it is that it is not always recognised as such. The Haddad case seems fairly clear-cut: She clearly stated that she wanted to stay at home and she was told that she would lose services if she didn’t enter an institution. That sounds forced to me, and it sounded forced to the court, and most of the people discussing the case seem to agree.

But other cases are less clear. A lot of people with disabilities are not provided with information they could use to make choices independently. They are pressured by family members or care providers. Someone in a situation similar to Haddad’s might not be aware that home care was an option. All it would take is being whisked into an institution from the time of an accident and deprived of access to information suggesting that there are alternate modes of care. We see the same thing with decisions about medical care, where people aren’t provided with information and options, but simply told what to do.

‘Forced’ is a slippery word and it is not uncommon for people who want to deny that forced institutionalisation happens to find ways to weasel out of confronting it. After all, if you don’t say the word, it’s not happening, right? This persistent denial is one of the things that makes it so difficult for us to confront the real-world consequences of ableism. If we can’t get people to talk about the fact that forced institutionalisation happens, we can’t get people to talk about why it happens and we can’t get people to fight it.

Forced institutionalisation is not the only denial of rights and autonomy to people with disabilities that people think of as a thing of the past and believe doesn’t need to be addressed, countered, or fought any more. As a result, when we attempt to have conversations about these very real, very structural, and very present issues, we meet rhetoric like ‘oh, well, that doesn’t happen anymore, right? It sure was sad when it did, though.’

Michele Haddad, and thousands of people with disabilities all over the world, can personally testify that forced institutionalisation is not a thing of the past; here in California, for example, disabled activists are currently protesting cuts to In Home Support Services, a program that is vital for people receiving home care. Those funding cuts will result in institutionalisation for people currently receiving IHSS services.

Recommended Reading for June 22, 2010

Ken Reibel at Huffington Post: Teen With Asperger’s Arrested: Were Callers Racial Profiling?

Neli, as his family calls him, is 18 and has Asperger’s, a mild form of autism. Three Mondays ago, he rose early and left home without telling his mother. “When I entered his room at 6:30 am and didn’t see him, I assumed he had gone for another walk,” she says. It was a school day.

Four hours later Stafford County authorities had ordered a lock down for eight schools, and Neli was in police custody, facing one count of malicious wounding of a law enforcement officer, one count of assault and battery of a law enforcement officer, and one count of knowingly disarming a police officer in performance of his official duties. The cascade of missteps that led to the arrest suggest a combination of public racial profiling and the over reaction of law enforcement officers who are unfamiliar with autistic behavior.

kaz (DW): the h/c bingo post

If I believed that the people doing h/c bingo were bound to write horribly problematic stuff, I would not be writing this post. Because it’s a lot of effort and not really all that pleasant and I don’t like talking at brick walls and in that case I could just wait until you wrote the horribly problematic stuff to take it apart. The reason I am writing this post is because I think it might change things. And I think the same goes for a lot of people in this discussion.

Kelly at Underbellie: Look fabulous or go home

The vast, vast majority of the eighty-three (so far) comments on this post concern women’s bodies, full stop.  The list went on: people (women) are in denial about their size; thus they wear ill-fitting clothes which are somehow a grievance committed against us, the viewer; people are gross for being fat but they’re really gross for not disguising this fat in some way according to the standards of the poor innocent bystander who has to see this body.

Katy Butler in the NY Times Magazine: What Broke My Father’s Heart [trigger warning for some discussion of assisted suicide]

Upstairs, my 85-year-old father, Jeffrey, a retired Wesleyan University professor who suffered from dementia, lay napping in what was once their shared bedroom. Sewn into a hump of skin and muscle below his right clavicle was the pacemaker that helped his heart outlive his brain. The size of a pocket watch, it had kept his heart beating rhythmically for nearly five years. Its battery was expected to last five more.

Recommended Reading for June 1, 2010

fiction_theory (LJ): The internet IS real life

The problem with impeaching someone’s anti-racism based on attendance at a specific march or even public rallies and protests in general is that it assumes that a) attending such events is a more real, valid, and important means of expressing anti-racism than any other means, specifically online and b) that attendance is a feasible option for everyone.

Marching at a rally or attending a protest is all well and good, but it’s not something that is an option for everyone. It’s quite ablist to ask such a question as though the privilege of being able to attend excludes the antiracist work of those who use other venues.

Mattilda at Nobody Passes: Closer

Somewhere between sleep and awake, a new day and last night and tomorrow, like they’re all in a circle around me but I’m somewhere in bed where I can almost read the sentences except they blur away from me, and I keep thinking maybe sleep, maybe this is more sleep except I don’t know if I want more sleep.

thefourthvine (DW): [Meta]: The Audience

I will not bring up my disability, because I don’t talk about it here, except to say that if that part of me appears in a story, it will be as either a clever gimmick (and a chance for a main character to grow as a person) or a sob story (and a chance for a main character to grow as a person). (No, there will never be a main character just like me. Most of the time I think that’s normal, and then I look at, say, SF and think standard-issue straight white guys must have a whole different experience on this issue. How weird would it be, to have basically all mainstream media written for you like that?)

Ian Sample (at The Guardian online): Bone marrow transplants cure mental illness — in mice

The team, led by a Nobel prizewinning geneticist, found that experimental transplants in mice cured them of a disorder in which they groom themselves so excessively they develop bare patches of skin. The condition is similar to a disorder in which people pull their hair out, called trichotillomania.

lustwithwings at sexgenderbody: Do I Owe Everything I am to The Internet?

Despite their lack of a body, my friends are still quite active in the world of Social Networking which acts on the physical world in much the same way things on our mind do. The contents of the Internet affect the physical world through many of the same processes as the contents of a mind, yet the contents of the Internet as a public mind can affect many more minds, and many more bodies than a private mind.

Question Time: Community

Question Time is a series in which we open up the floor to you, commenters. We invite you to share as you feel comfortable.

How important is being in community with other disabled people to you? Where do you find community with other disabled people? How do these communities fit in with other ones in your life?

By 15 April, 2010.    Question Time   

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.)