Category Archives: justice

Lines in the Sand: Daly, Showalter and Tactics of Exclusion

activism, autonomy, blaming, bodies, feminism, gender, identity, intersectionality, justice, language, normality, politics, shaming, social attitudes, , , , , , , , , , ,

The second-wave radical feminist theologian and professor Mary Daly died earlier this month, and there has been a veritable outpouring of eulogies from various feminist blogs.

Few of these eulogies have acknowledged Daly’s transphobia and racism.

I do not deny that Daly was an important figure in second-wave feminism, but to mourn her passing without a nod to her work’s more problematic aspects, or explorations of these aspects, are, to put it mildly, not good. In particular, the intense, hateful transphobia found in some of her writing, and her issues with unexamined white privilege and racism — which both QueenEmily at Questioning Transphobia and Sungold at Kittywampus cover very well in recent posts — strikes many as both deeply disturbing and an old pattern that has, and continues to, rear its grotesque head in certain segments of contemporary feminism. I include myself among those who are deeply troubled by Daly’s transphobic sentiments and her questionable record when it came to examining the entrenched racism and issues surrounding white privilege in the second-wave feminist movement.

I should probably mention at this point that I do not mean to appropriate or co-opt the struggles of trans* folks in any way, although my cis privilege will most likely be unintentionally reflected at points in this piece. Though the struggles of trans* people, trans feminists and PWDs and disabled feminists are not the exact same, some exclusionary tactics of certain cisgendered feminists and those of abled feminists sometimes take similar forms, especially within the mainstream feminist movement. The oppression of trans* folks and PWDs in cis, abled culture intersect in a number of ways; this post, however, barely scratches that surface. I believe that the many issues present in Daly’s work–as well as the reaction to her death around the blogosphere–can serve as just one entry point to discussions of the similarities in oppression(s) that trans* people and PWDs face. There are also clear differences, among them the fact Daly used language that can only be called genocidal, while many other feminists of her generation did not advocate such an extreme path when it came to keeping certain individuals out of feminism. I will be focusing on feminism’s exclusion of trans* and PWDs as reflected in the work of two very influential second-wave feminists here, but there is, of course, much more to these stories.

Daly’s penchant for exclusion and outright hatred (particularly of trans* individuals) couched in oddly phrased academic rhetoric unfortunately brings to mind another famous second-waver’s similar issues with people (particularly women) with disabilities. Princeton scholar Elaine Showalter — best known for bringing feminist literary theory to the fore in the academy at a time when such a discipline was, for the most part, inconceivable — dismissed disabling conditions like Chronic Fatigue Syndrome, Gulf War Syndrome and mental health issues such as Dissociative Identity Disorder (referred to in the text as Multiple Personality Disorder) in her 1997 book Hystories.

In Hystories, Showalter attempted to debunk “modern media epidemics” such as the aforementioned disabilities as well as more traditionally disproven phenomena such as alien abduction and satanic ritual abuse. In the book’s chapter on Chronic Fatigue, Showalter rather disingenuously declared that she did not want to “disparage the suffering” of people with such conditions only a few pages before she called CFS an extension of Western “fin de siecle [end of the century] anxiety.” She followed this stunning assertion with the claim that the Western news media was primarily responsible for making CFS into an escalating “psychogenic epidemic” (117, 131).

Like Daly’s severe opinion of trans* people as dupes of the medical industry (which Kittywampus cites in her post), Showalter also seemed to be taken with the idea that people with CFS are somehow being duped into thinking that they are ill because of the media focus on their condition. She wrote that many CFS patients and their defenders are “hostile to psychiatric or social explanations” of the condition, and that many of them react in a way that is not friendly to the labeling of CFS as “psychiatric” (128). However, the reactions of these same patients make sense if considered from a non-abled perspective. Showalter also seemed completely mystified by these “hostile” reactions. If CFS is just a manifestation of “fin seicle anxiety,” as she contended (adding that “emotions have tremendous power over the body”) she seemed to push the conclusion — without any scientific or medical proof — that many people with CFS have somehow been brainwashed into believing they have it; thus, the media-driven “hysterical epidemic” has worked.

Nowhere are feminists with Chronic Fatigue Syndrome or related conditions consulted; the not-so-feminist implication here is that feminists with Chronic Fatigue Syndrome either do not exist or are just victims of a “hysterical” media-led epidemic and therefore cannot be “real” feminists. This is similar to how trans* feminists were erased, excluded and castigated by Daly as somehow not “real” women or feminists, and as benefiting from patriarchy in a way that “real” women and feminists could not. To put it crudely: This is exclusionary bullcrap, and it does not do trans* people, people with disabilities, feminists who fit either (or both) of these categories, or the feminist movement as a whole any favors whatsoever.

Exclusion is not radical. It has never been radical. It is, in fact, extraordinarily status-quo. No one should be able to arbitrarily pick and choose who “belongs” in the feminist movement and who does not, especially if those who are being excluded because of their gender identity, sexual identity or disability actively identify as feminist. Feminism should be for a wide variety of people; exclusion, however, is something that is not — and has never been — very  feminist.

Author’s note: I will be moderating this thread with an iron fist; please have the courtesy to not try to tell me how Daly really was an ally to trans* folks, or how Showalter didn’t mean what she said about CFS *that* way, or that either author’s influence on the feminist movement somehow excuses their hatred and bigotry. Thank you.

[Cross-posted to Ham.Blog]

Less Than / More Than – My complicated thoughts on reproductive rights & feminist discussions

101, bodies, class issues, feminism, intersectionality, introspective, justice, reproductive justice, resistance, social attitudes, , , , , , ,

When I’m not being a student, I typically get temp jobs working in a variety of offices. Once things get settled, and folks realise I am married, they often start asking about kids. “Do you have kids? No? When are you having kids? It’s not too late, you know!”

This may seem like an opening for a post about being child-free, but it’s not.

I often put these questions off with flippancy or a shrug or just saying we’re not interested in having kids. In my experience, this will often have people leave the issue be.

Sometimes, though, people will hound and hound and hound.

“Oh, it’s different when they’re yours. But what about Don, what does he think of all of this? What about your parents? What about– what about– what about?” [1. Everything in quotation marks in this post is a paraphrase.]

Do you want to know the secret way of getting people to never again ask why you’re not having children?

At some point, drop into a conversation that your husband’s disability is genetic.

Without fail, that has stopped every single person who has asked and asked and asked about children, even when the “genetic” bomb isn’t dropped in a conversation about having children.

One of the reasons why the focus of abortion! abortion! abortion! whenever talking about reproductive rights really bothers me (and a lot of others) is because of the assumption that people like Don & I shouldn’t have children (because – oh no! – the child likely will have Marfan’s just like Don! And everyone knows people like Don are a burden on the system/have miserable lives/are never happy/can never be married/are all the same/should be stopped/are just an example for the rest of us). When people focus on reproductive rights only involving abortion, they neglect that, for people like us, the pushback is to not have children. Don’t burden the system. Think of the children – and don’t have any.

I’ve seen similar conversations play out around the feminist blogosphere. [1. I have decided not to link to specific examples, because it’s a general attitude I’m talking about here. And also, who wants to start a blog-war? Not I, said the Anna.] When older women have children, there is always a sudden upswing in “BUT THE CHILD MIGHT HAVE A DISABILITY!” (Yes, the child might. And the child might fall out of a tree and land wrong. Or the child might grow up to be the next Stephen Harper and prorogue Canadian government. WHO KNOWS!) “Think of the children!”

The same fears are reflected when discussing women with disabilities having children (with bonus “but how will she care for the child?”), or when parents forcibly sterilize their disabled daughters.

This pains me, perhaps especially as someone who doesn’t want children. It pains many other women who, for a variety of reasons, are discouraged or outright prevented from having children they want. That, in North America, these women are overwhelmingly women of colour, lower class, disabled, queer – that they’re often women who have been institutionalised in some way, be it a “medical” institution or a “criminal” one – is not a coincidence.

In my experience, marginalized voices who speak out about this disparity between on-line feminist discussions of abortion and on-line feminist discussions from a broader reproductive justice framework [1. FREE Halifax: Feminists for Reproductive Justice & Equality. We meet every other Tuesday for teach-ins & movies about Reproductive Justice. Look for us on Facebook.] are often shouted down, or ignored. We’re told our issues are “special circumstances”, or “pet projects” or “in the minority” or “don’t apply to as many people” or … Well, basically everything feminists in general are told when they talk about issues that are “special circumstances” that don’t apply to enough people (read: men) to count.

Frankly, I end up not knowing where to go from here. Do we, who are limited on spoons or forks or energy or time, keep trying to push for more mainstream feminist discussion on these issues? Do we form our own spaces, our own groups, and have our own discussions? Do we write blog posts that seem to dwindle down, rather than lead us all into the future?

I don’t know. I know and respect people who have made each of those choices, and still others that I haven’t mentioned. But I don’t know what the right one is.

Maybe they all are.

Quoted: Karl Michalak, “Face Value” (excerpt)

autonomy, blaming, bodies, creative work, disability activism, justice, language, normality, Quotations, resistance, sexuality, social attitudes, , , , , , , ,

Everything healed up
but in a very strange way
Years later
when it was very obvious
that something was very wrong with my face
everyone
said one or more of the following:

It’s the Lord’s will.
Just learn to live with it.
It’s all in your imagination.
Don’t be so self-centered.
Shut up and do your homework.
Other people are worse off than you.

[Full text available in the 2004 anthology Queer Crips: Disabled Gay Men and Their Stories, edited by Bob Guter and John R. Kilacky.]

On Speculation and Boundaries…

disability activism, feminism, justice, media and pop culture, social attitudes, , , , , ,

Brittany Murphy died today.

It took exactly five seconds for the speculation to start up about why she would die of cardiac arrest at the tender age of 32, and not quite double that for the snarky comments to seep out of the woodwork. Because certainly if she had an existing heart condition we all would have known about it, since we have that right to her privacy.

What we have, much like the public consumption we have of celebrities, especially women, is a perceived right to make snap judgments about their lives and their health.

Brittany Murphy’s death is tragic on its own merits. She was talented and only 32.

And if there is any truth to the speculation, then she was sick. If she was indeed sick, then we, despite what we think, do not have a right to flaunt that illness about. She was ill, and she lost. And to me, that means something, on a human, and mortal level. There but for the grace and all of that. When I read the comments that speculate about what illnesses she certainly had or what addictions would be necessary to cause this premature death it is like nails on a chalkboard while chewing tinfoil whilst walking on broken glass but not the fun Annie Lennox version with adorably mistreated Hugh Laurie. If there is any truth to it then she was one of us. She was possibly like me and she lost. That scares me at my core. That was one of us in there and instead of having a moment to appreciate the gravity of that we are ripping her apart and we don’t even know. We Don’t Fucking Know.

Also, last I checked it is bad form to speak ill of the dead. But I suppose I am still an idealistic, silly girl to expect people to treat other people with human dignity. I have spent too much time in social justice for that.

If not, then her death was simply a tragic and random happenstance.

If any information is released, we have to wait for it and presume that it is the truth, and if not, we have to go on with what we have.

And either way, it isn’t our business, really.

She died, and that itself is enough. It should be. She gave us entertainment and amusement. She did what she loved with her life.

We should give her a modicum of respect in death.

May she rest in peace.

For Cereal, Internet?

disability activism, feminism, For Cereal?, justice, language, media and pop culture, mental health, social attitudes, television

A periodic feature in which we highlight some of the more ableist posts and comments in the blogosphere – the things that made us throw up our hands and ask “FOR CEREAL???” *

Today’s edition: a post at Jezebel titled “Woman, Go Take Your Pills!”: Schoolgirls Respond To Samantha Bee’s Christmas Conspiracies. Which, already – are you for cereal, Jezebel? The post reviews a Daily Show segment in which Samantha Bee meets with schoolgirls and, in the tradition of the Daily Show, presents outlandish and absurd positions to them as serious arguments. For example, she tells them that she doesn’t believe that Obama was born in the United States. The humor in the segment is the shocked and outraged responses from the schoolgirls to these positions and arguments.

At one point in the segment, one of the schoolgirls tells Bee “woman, go take your pills.” Which is problematic for a whole slew of reasons – the assumption that irrational or absurd political arguments are a sign of underlying mental illness, the assumption that medication is an appropriate treatment for all mental illnesses, the assumption that bystanders have a right to dictate the treatment a person pursues or receives for a mental illness. But none of these problems seem to have occurred to Anna at Jezebel, who chose the phrase to title the piece.

And the immediate response of commenters wasn’t to push back against this ableism, or to explain why using such a phrase is problematic, but to embrace the phrase as their “new smackdown,” per boobookitteh, or celebrating the “straightforward verbal beatdown these girls delivered so awesomely,” per BillyPilgrimisnotmylover.

So I award a “FOR CEREAL?” to Jezebel for approving of the phrase and using it to title their post, and a second “NO REALLY, FOR CEREAL?!” to the commenters for enthusiastically embracing this offensive phrase as their new go-to insult.

*(Actually, what I say, and what I considered titling this, is “Are You Fucking Kidding Me With This Crap, Internet?” but I’m trying to use less salty language.)

Hate Crimes against PWD

justice, normality, politics, violence

The FBI recently released the 2008 Hate Crimes Statistics report, summarizing hate crime data from over 13,000 law enforcement agencies in the United States. The Attorney General is required to compile and report on this data yearly. Although the majority of hate crimes are based on race, it includes reporting on crimes “motivated by disability bias,” which made up 1 percent of the reported incidents.

Of the total 9,168 hate crime offenses in the report, 85 were on the basis of disability: 28 against a person with a physical disability and 57 against a person with a mental disability. The most common offenses were “Simple assault” and “Intimidation,” with a number of “Vandalism” incidents also. The vast majority of incidents took place in the victim’s residence or home. This mirrors the overall data – the majority of all hate crimes regardless of basis were assaults and intimidation taking place in or near the victim’s residence or home.

What is most clear from the report is that the majority of crimes committed against people with disabilities are not considered or categorized as hate crimes on the basis of disability. The US Department of Justice released a 2007 report on crime against people with disabilities finding that in one year, approximately 716,000 nonfatal violent crimes and 2.3 million property crimes were committed against people with disabilities. Even considering that only one in five PWD crime victims “believed that they became a victims because of their disability,” these numbers are an order of magnitude larger that then total crimes against PWD listed in the hate crime statistics.

Whether crimes against people with disabilities should be considered hate crimes is a difficult and complicated question. One on hand, the DOJ report demonstrates that the rate of nonfatal violent crimes against PWD was 1.5 higher than the rate for TABs, with the rate of crimes against women with disabilities almost twice the rate for TAB women. It is hard to imagine that disparities this significant are unrelated to disability status.

At the same time, I am concerned about giving more power to the criminal justice system. I read a compelling piece at The Bilerico Project recently which, while focus on trans issues, seems relevant to this discussion:

No one can deny that particular groups are in fact treated with discrimination and even violence. But rather than ask how about how to combat such discrimination and violence, we’ve taken the easy route out and decided to hand over the solution to a prison industrial complex that already benefits massively from the incarceration of mostly poor people and mostly people of color. It’s also worth considering the class dynamics of hate crimes legislation, given that the system of law and order is already skewed against those without the resources to combat unfair and overly punitive punishment and incarceration.

What do you think – should crimes against PWDs? be punished as hate crimes? Is that an effective way to address and prevent continued crimes against PWDs?

Reading List: Mental Health Diversion Courts

justice, mental health, reading list, recommended reading, Uncategorized

Yes, this looks like our daily Recommended Reading posts that Anna does for us every day – but it’s different. Reading List is a selection of links around a single issue or topic, as a start for those interested in exploring it further. The initial edition, on mental health diversion courts, was sparked when I came across the first article:

Susan Thornton, “A court for mental illness,” Denver Post, Nov 15, 2009

History will be made in Colorado’s 18th Judicial District this week when Colorado’s first districtwide adult Mental Health Court will convene to hear the case of “Robert,” age 37. Robert has bipolar disorder. He frequently goes off his medication, hasn’t followed through with treatment plans, has attempted suicide, and has been hospitalized three times. He has several prior convictions for shoplifting, violating restraining orders and resisting arrest. Now he says he wants to figure out a better way to live, and has volunteered for the Mental Health Court.

The court is a specialized treatment court designed to divert nonviolent felony offenders who have a serious mental illness such as bipolar disorder, schizophrenia or major depression, as well as those with a combination of mental illness and substance abuse. It is not open to those with violent behavior or to sex offenders.

Most of the people who’ll come before the court have been repeatedly in and out of jail. They’ve been charged with minor offenses that result from their mental illness, things like being a public nuisance, drinking in public, and shoplifting. They’re charged with a felony because of the cost of items they’ve stolen or damaged. Usually they have been off their medications because they can’t afford them, and live in and out of shelters.

Each participant will have an intensive treatment plan, including case management and medications, and will be closely monitored by probation officers and mental health professionals. Treatment addresses the mental illness, recurring substance abuse and criminal thinking. There will be incentives for compliance, and sanctions for non-compliance that may include re-sentencing.

This article by the Bazelon Center for Mental Health Law gives a good overview of why the current use of the criminal court system to address mental illness is so problematic, including these statistics on the scope of the problem:

  • Approximately a quarter million individuals with severe mental illnesses are incarcerated at any given moment—about half arrested for non-violent offenses, such as trespassing or disorderly conduct.” This does not include more than half a million probationers with serious mental illnesses.
  • Sixteen percent of state and local inmates suffer from a mental illness and most receive no treatment beyond medication.”
  • During street encounters, police officers are almost twice as likely to arrest someone who appears to have a mental illness. A Chicago study of thousands of police encounters found that 47 percent of people with a mental illness were arrested, while only 28 percent of individuals without a mental illness were arrested for the same behavior.

The same Bazelon article also has a nice outline of the role of mental health courts (as well as detailed analyses of different models of these courts and recommendations for improvements):

From the criminal law perspective, two rationales underlie the therapeutic court approach: first, to protect the public by addressing the mental illness that contributed to the criminal act, thereby reducing recidivism, and second, to recognize that criminal sanctions, whether intended as punishments or deterrents, are neither effective nor morally appropriate when mental illness is a significant cause of the criminal act. The goals of mental health courts, then, are: 1) to break the cycle of worsening mental illness and criminal behavior that begins with the failure of the community mental health system and is accelerated by the inadequacy of treatment in prisons and jails; and 2) to provide effective treatment options instead of the usual criminal sanctions for offenders with mental illnesses.

There’s also a nice overview of the mental health courts at Frontline, from their series “The New Asylums,” devoted to the stories and issues of people with mental illness in state prisons. The site lets you watch the whole program online and provides a separate complete transcript. There’s also an interactive state-by-state map so you can find information on specific states.

One reason these courts are becoming increasingly popular is because of their fiscal effect – it is more difficult and expensive to incarcerate a person with mental illness than a neurotypical inmate. For the super-wonky, here’s a detailed report from RAND on the fiscal impact of a mental health in Allegheny County, Pennsylvania. It found that the costs of providing treatment and services was more than offset by the savings in jail costs. The National Center for State Courts also has a great list of resources on these courts, including lots of studies on fiscal impact.

This is a big part of why there’s significant governmental support for these courts. The Federal Department of Justice provides assistance and resources to communities who want to begin mental health courts. The Council of State Governments Justice Center provides technical support and information to communities working with the DOJ, including a list of essential elements in a mental health court and a practical guide to mental health court design and implementation.

I am not nearly as familiar with court systems outside the US, but even some cursory googling shows that these exist in some model in places including South Australia, England (although the report notes they’re not achieving their potential), Canada, and, um, some places in the European Union.

I also include the significant caveat that the ideas behind and goals of these courts are only as good as their implementation, and that can vary a lot. Not every court is great and even if they worked perfectly, there would still be a lot of problems with the criminal justice system’s relationship with people with disabilities overall.

If you have information on mental health courts in other areas or other great resources, please drop them in the comments!

I’d Rather Be Dead

blaming, disability activism, From the comments, i'm right here, justice, normality, representations, resistance, shaming, social attitudes, violence

I didn’t think I’d need to do this but it has come up: This post is not a place to discuss the merits of assisted suicide. Many disabled people, including me, find it really unsettling. In the context of able-bodied and neurotypical people telling us our lives aren’t worth living it is especially inappropriate. Comments on the subject will not be published.

Warning: The following includes graphic descriptions of medical unpleasantries.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I have a chronic pain condition. Most of the time I don’t bother getting into detail because I don’t feel like it but it’s illustrative here, so I’ll share. I live in pain. It pools in my hips and my left knee and my right shoulder and sometimes my legs turn to stone. Every step I walk hurts and I keep getting slower and more labored. (My disability is invisible only in the most technical sense. Fortunately people have lots of practice not seeing disability! So, phew.) Sometimes, like the other night, my hands hurt so much I can’t get the non-child-resistant easy-open top off the bottle of pain meds.

(If my hands hurt so much why do I type? Why not use a voice writer? Because this voice here, this is the voice I write with. This is not the voice I speak with. I would write far less if I had to use my voice to do it. And it’s only pain.)

And then there’s the Weird Shit. (It’s a technical term.) I take antibiotics daily because if I don’t I get a urinary tract infection which leaves me crumpled in the bathtub screaming, gushing blood, graying out, waiting for the big antibiotics to get working. Sure I could go to the emergency room and I have — where they give me the same antibiotics I’d get from calling my urologist’s answering service and pain meds weaker than what I take daily. And I get to deal with having medical professionals react to me being trans* and poor.

A sore throat once turned out to be a fungal infection, another one was a tonsillary abscess, the treatment for which was getting stabbed with a large-bore needle then having the contents of the abcess squished out. It was about as comfortable as it sounds, and it tasted every bit as good. I did not bite the nurse practitioner who was treating me. My general practitioner later looked at me really weird when I expressed concern that my next sore throat (it was just a virus and a runny nose) might be one of these until I explained that I’d actually had these things.

The big one was when a cold — in the space of three weeks — became bronchitis, then pneumonia. If I rolled onto my right side, I felt like I was drowning. If I sat up, I felt dizzy. A chest x-ray showed much of my left lung was wrong. I was admitted to hospital that day, the five doctors that came that night took my wife into the hall and told her the things that could be killing me. There was fluid in the space around my lung. They poked at me and stuck a needle in and drew off three hundred millilitres. I didn’t get appreciably better. They installed a peripherally introduced central catheter so they could give me vein-killing antibiotics like vancomycin and aureomycin. The fluid they’d drawn off, cultured, proved to be sterile. More chest x-rays showed shadowy bits around my heart and more imaging showed fluid buildup there too — between having a lung and a third to breathe with and a heart working under the increased burden, I was understandably tired. Even more understandably when some time during the week I was in hospital, my red blood cell count fell through the floor. They were tracking everything that came out of me so it wasn’t like the blood was going anywhere, it just… vanished. They gave me more blood. Later they got the bright idea of drawing off the fluid around my lung at least and took me down to radiological medicine. I got to sit up for it. They did throw in some lidocaine, which at the time I hadn’t figured out that I could say “Hey I don’t metabolize this like most people I need more time for it to take effect before you start stabbing me with shit” so the ginormous fucking needle they stabbed me in the back with? I felt most of that. Ow. I wasn’t supposed to see it (mustn’t discomfit the patient, even if she finds things comforting that most people don’t), but I got a look at the three-litre vacuum bottle half full of murky green fluid they’d sucked out of me. I felt much better, though that lung felt crinkly like cellophane from having been collapsed so long. It was a teaching hospital, so the place was crawling with med students who all (I heard — the nurses wouldn’t actually let them come near my room for which I am still grateful) made excuses to come read my chart. I was medically interesting. I never did get a diagnosis. A real diagnosis, I mean. I know full well that ‘idiopathic pericarditis’ means ‘the membrane around your heart is inflamed and we don’t know why.’

On a fun side note, while I was in hospital busy being sick with Weird Shit I kept getting calls from work. I was the only person in the company who knew how to do what I did, so I provided user support. From my hospital bed. On morphine, with blood running into my arm. It was kind of impressive, in an appalling way. When I was home (I was out of work almost two months and none of it was remotely vacational — at some point I’ll write about having had a whole week of vacation in the ten years since my diagnosis with this chronic pain condition) they sent someone to bring me a computer so I could do some things, occasionally.

I’ll stop with the Ways Kaninchen Zero Is Very Very Ill now. The point is yeah, there’s a lot going on. Most of us could tell similar stories, or scarier ones.

I cry, often. Even with the meds I’m in a lot of pain all the time. I’m exhausted, all the time. I work thirty to forty hours a week in spite of it (though I’m running up against the limits of that too).

People who don’t live with chronic pain wonder how I do this. How do I live with this much pain? How do I keep going? How have I done this since I was a teenager? (I’m thirty-seven now.) I must be a fucking paragon of moral fortitude, because (I’m told) I’m not even all that bitter about it (though I am, sometimes). I’m happy, when I can get around the depression I’ve carried most of my life too.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I hear this a lot. It’s actually not a secret, though I think the able-bodied are somewhat afraid of the answers. It’s not even difficult. Most anyone could live my life, probably. I have a good life. My doctors listen to me when I tell them what’s going on with me which is wonderful after so many years of being told I wasn’t in pain because the tests didn’t show anything. I have books, games, computers. Because of the last I have friends and I fall in love about five times a year. (I’ve been working on doing things that scare me and I’m telling people more that I’m infatuated, crushing, in love. And that they don’t have to feel the same way about me at all.) Sometimes I can actually stop writing a story and call it finished.[1]

Here’s how I do it: I want to live. I don’t want to be dead. My life is worth living. It’s not tragic. It’s easy. We’ve all got the means to get acclimated to a new home, new furniture, changes in climate and environment. Having a different bodily environment or neurological environment is just something else to get used to.

The commenters in the Why Are They So Angry At Her? thread have it right, I think. The physio/neurotypical haven’t bothered to consider our lives from any perspective but their own and all they see are limits. They imagine being ill with the flu (which leaves me in bed and miserable and hating it too), or an injury that hurt and impaired their movement but ultimately healed: a sprained joint, a broken bone. (All of which I’ve done also: counting the events where more than one bone broke at a time as one, I’ve broken bones more than ten times though I’m a little fuzzy on exactly how many — broken toes are hard to track.) They recall how miserable being ill or injured was and imagine having a disability (or several) as being ill or injured and thus miserable all the time.

We’re not. Even when depression is part of a constellation of symptoms or a side effect of meds or just something else to live with, we’re not. We’re just living, like everyone. When we hear “I’d rather be dead” it often sounds like “you should be dead.” And with good reason. People with disabilities are killed by those who should care for them. Parents kill their disabled children and the public’s sympathy is with the murderers. Caregivers in institutional facilities kill residents and few people care.

Amanda has written extensively about this at Ballastexistenz, and her Background, to the Foreground post is excellent. Not Dead Yet is dedicated to working against euthanasia and assisted suicide policies that make killing us legal, or at least fuzzy. Lauredhel’s post at Hoyden About Town about Christian Rossiter’s lawsuit to refuse nutrition hits most of the points I try to make when I talk about this issue. It’s despair and isolation that drive us to want to die. The neuro/physiotypical don’t see that part of it.

There are social feedback loops that reinforce these attitudes and keep us isolated. Ignorance and fear and hate go together. Neuro/physiotypical friends and relatives stop inviting us to things after a while. We’ve said we can’t come a number of times: we weren’t up to it for whatever reason that day, the venue wasn’t accessible, we didn’t have transportation. Eventually it becomes habit, justified by unhelpful concern. Whatever place isn’t accessible (it’s too much bother to plan for real utility). Oh, they probably won’t feel up to it (our lives are miseries anyway). Around it goes.

[1] Some of my stories can be found at my story blog, though be warned: nearly all of them involve themes of sex, violence, death, horror.

A brief PSA on language

101, activism, justice, language, social attitudes, , , , , , , , , , , , , , , ,

So many people have complained that it is asking too much of abled people to stop using words they consider trivial: crazy, insane, lunatic, idiot, moron, dumb, blind, etc.

I beg to differ.

You know what is really damn easy? Erasing these words from your vocabulary. All you have to do is stop saying them.

You know what is really hard?

Confronting people on their use of same language.

We aren’t even asking you to do the hard work. We aren’t asking you to tell other people to stop using that language. We aren’t asking you to confront other people on their use of that language. We aren’t asking you to explain why it is problematic, to answer people’s questions, to deal with their redirection tactics, or to handle the attacks on and harassment of the people negatively affected by that language that such confrontations always seem to draw.

You don’t have to take the brunt of it. You don’t have to deal with the negative consequences. You don’t have to face employment discrimination, street harassment, caretaker abuse, and other people’s general cluelessness about our lives. You get to sit tight in your privilege, enjoying it without even realizing you’re doing it.

All you have to do is cut a few words out of your speaking and/or writing vocabulary. That’s it.

We’re the ones who are putting our safety on the line trying to change the cultural system that oppresses us.

Two seconds to reconsidering what you’re really trying to say? Easy.

Changing other people’s deep-seated attitudes? Really damn hard.

How do you think we feel when you complain that two seconds is just tooooo haaaaard for you to take on?

(Cross-posted at three rivers fog.)

Quoted: Paulo Freire

activism, disability activism, justice, Quotations

I find this quote helpful when I’m feeling worn down and need a little inspiration and motivation to keep fighting.

“Washing one’s hands of the conflict between the powerful and the powerless means to side with the powerful, not to be neutral. ”

– Paulo Freire, “Pedagogy of freedom: ethics, democracy, and civic courage” (1998).

The only way to not advance the agenda of the powerful is to fight it. (ht ohfortheloveofdog)