Category Archives: resistance

BADD: Why I Write

activism, intersectionality, justice, make the world a better place, politics, poverty, resistance, social attitudes

(This was originally posted as a BADD contribution at my tumblr.)

I spend a lot of time blogging about and against ableism, about being a person with a mental illness, about the way policies and cultural attitudes and assumptions act to disadvantage people with disabilities. But for some reason, I was having a lot of trouble coming up with a topic for[BADD] . I got some good suggestions – issues of ableist language (and I’ve written in the past about the words ‘retarded’ and ‘hysterical’ and their ableist roots and effects), issues about the enormous intersection between poverty and disability (poverty leads to bad health outcomes and disability often leads to poverty, making a self-reinforcing cycle), and disability tropes in pop culture (I don’t watch family guy but have talked about 90210!).

I thought of some other topics I could address – why I see today’s immigration protests and related activism as a disability-related issues and the importance of intersectionality issues in meaningful social justice work, or even an info piece on how PWDs should take steps to prepare for emergencies such as natural disasters. but I didn’t feel excited about any of those.

So I’m going to go back to the beginning, and talk a little about why I identify as a person with a disability, why I talk about disability issues, why I’m a contributor to a blog about feminist and disabilities, why I spend so much time and emotional energy on these topics. (Which are, frankly, often personally distressing, what with all the info about how I’m going to die poor and alone.)

I write because I want things to change. I’m not always sure the writing helps me individually – it is hard to focus on these issues, to perpetually remind myself of the limitations caused by my disabilities, of the societal attitudes that assume that I am lazy and worthless and dangerous to be around, of the innumerable policies and laws that reinforce and ensure the unequal status of PWDs. And while I see the value of creating a space where other PWDs can discuss their personal circumstances and struggle and receive support instead of judgment and blame, the internet is a big enough place that I think that role is being filled, well, by lots of blogs and LiveJournal/Dreamwidth communities.

I write because I want people – both PWDs and TABs – to recognize the larger cultural and political forces that create and maintain societies that use disability as a punchline, as an insult, as a reason to keep people unemployed, poor, disempowered, and sometimes leading directly to their deaths. I want PWDs in the US, Canada, UK, Australia, and other “first world” countries to understand that lobbying their governments to abandon use of land mines can directly affect the prevalence of disabilities in poorer countries like Cambodia (thanks to s.e. smith for that great post!). I want people to think about how recovery efforts in disaster-affected areas like Haiti need to include specific focus and attention on the unique and disproportionate needs of PWDs.

But for me, it’s not enough to just help people understand. I desperately want them to act. To get involved in the political process to advocate for the rights and needs of PWDs. To get involved in social justice issues as a whole, because issues affecting immigrants are going to fall heavy on immigrants with disabilities. To tease out how a national policy can and will affect PWDs in other, poorer, countries. To vote, to talk to their elected representatives, to encourage others to act.

I believe that change is possible. And I blog to facilitate, encourage, and promote that change.

Disability Representation in Music (Video), You’re Doing It Right: Janelle Monae’s “Tightrope”

bodies, creative work, happy posts, justice, media and pop culture, normality, race, resistance, social attitudes, Uncategorized, , , , , , , ,

This recent music video from singer-songwriter Janelle Monae is a great example of how not to completely screw up representation(s) of disability. Lyrics are located here.

And a description, courtesy of FWD’s own S.E.:

A black title card reads: ‘The Palace of the Dogs Asylum: Dancing has long been forbidden for its subversive effects on the residents and its tendency to lead to illegal magical practices.’

Two people in tuxedos are seen sitting against a white tiled wall. One is reading a book and the other is playing with a small ball, which eventually drifts up and floats in the air. The reader turns to see it and looks surprised.

Cut to an ominous-looking institution with a sign in front reading: ‘The Palace of the Dogs.’ Bright yellow text reading: ‘Monae and Left Foot: Tight Rope’ overlays the image as bouncy music plays.

Cut to a scene of a nurse pushing a cart full of medications. The scene starts with her feet, in sensible white shoes, and slowly pans up. She is moving down a hallway. As she proceeds, a woman (Janelle Monae) in a tuxedo without a jacket, with her hair in an elaborate sculpted pompadour, peers out the door of her room and then ducks back in. As she closes the door, we cut to her in her room, leaning against the door, and she starts singing.

The video cuts back and forth between the nurse moving down the hall, Monae singing and dancing in front of a mirror, and two ominous figures with mirrors for faces draped in black cloaks, seen from a distance. She eventually puts her jacket on and moves out of her room, softshoeing down the hallway, and other people, also in tuxedos, join
her. They storm into a cafeteria, where a band is playing, led by Big Boi, wearing a peacoat, a scarf, and a snappy hat. Monae jumps up onto a table and starts dancing, while people dance all around her.

As everyone dances, the nurse is seen peering around the corner with an angry expression. The scene cuts to the nurse gesticulating at the black-robed figures, who start to glide down the hallways and into the cafeteria. Monae dances right out of the wall, leaving an imprint of her clothes against the bricks, and ends up in a misty forest in what appears to be afternoon light, where she is pursued by the gliding black figures. Leaves cling to their cloaks. Evading them, she walks through a concrete wall, leaving another impression of her clothes behind, and she winds up in the hall again, where she is escorted by the robed figures. The video cuts back and forth between scenes of her
walking down the hall and the scene in the cafeteria, where music still plays and people still dance.

As she walks, a man in an impeccable suit and top hat walks by and tips his hat to her. She goes back into her room while people dance in the hall. The camera closes in on a table covered in papers and a piece of equipment which looks like a typewriter. She types a few keys, and then touches the papers, which turn out to be blueprints marked with ‘The Palace of the Dogs.’ She sits down on her bed,  rests her chin on her hand, and looks into the camera. The music fades and the scene cuts to black.

I really like what Cripchick has to say about this video: “i love the way that this video A.) critiques psychiatric institutions and B.) shows the ways that institutions/society/ableism polices our whole beautiful creative selves because if unleashed, we are powerful/uncontrollable.”

Additionally, I thought the cloaked figures were an interesting representation of the concept of the looking-glass self; another interpretation might be that they represent Bentham’s panopticon, or the sort of menacing, omipresent societal structure in which we must police ourselves constantly in order to be considered “normal.” Those are just two ways of looking at one aspect of this video, however.

What do you all think?

Anger as a Constructive Force

activism, feminism, identity, introspective, invisibility, justice, mental health, othering, politics, resistance, social attitudes, , , , , , , ,

Note: This is kind of an old post, but I think it’s still useful.

I’m sure that many of you have heard variations on the following:

“You’re just too angry. Your anger alienates people/potential allies and might make them afraid to associate with you! They won’t want to be on your side because of your anger.”

This statement, or a variation thereof, is often wielded at feminists, people of color (particularly women of color), radical progressives, non-mainstream members of the LGBTIQA community, disabled and chronically ill folks, atheists, fat acceptance activists, and others in order to get them to capitulate to some weird, unseen social standard that requires that they not offend anyone even as they fight to be heard and taken seriously, as well as for social and political justice.

There is a difference between being angry for its own sake, and turning one’s anger into action. For whatever reason, mainstream Western culture has decided that people who have historically been put down, devalued and mistreated by those in the majority should fight for their rights, but they should “be nice” while they do so. The messages that historically devalued groups have to get across, even if said messages are quite radical, should apparently be palatable even to the people who have the most social currency in mainstream society. What’s radical about that?

Anger makes people fundamentally uncomfortable, and I think that this discomfort often discourages constructive work. When those who need to express their anger, somehow, are not allowed to do so, the anger can become toxic. Instead of a catalyst for change, it becomes a symptom of a missed opportunity.

My own anger is something that I’ve just begun to embrace after years of stuffing it down and having it reappear at other times, often to my own detriment. Certainly, I may be too angry. I may indeed alienate people with some of my words. However, do I really want those who cannot “handle” what I have to say as allies, if I have to add, for example, rainbows and unicorns and puppies to my outlook on the world in order to make my outlook more palatable? No.

Anger, if used in a constructive manner, can be a great creative force. Most of the cartoons that I draw and have drawn start or started as brief doodles about things that make me or have made me angry. When I can create something that has been inspired by my own strong feelings, I feel much better and more able to cope with things such as my illness, and the physical pain and fatigue that come with it. When I take the opposite tack–that is, when I hold my anger in and don’t do anything with it–I feel worse.

[Originally posted at HAM.BLOG on August 7, 2008.]

“Defiant Birth”: Impolite Women Who Didn’t Make History

autonomy, bodies, feminism, medical practice, reproductive justice, resistance, social attitudes, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

[WARNING for this post: ableism within and without the medical system, pregnancy/baby losses mentioned]

defiantbirthDefiant Birth: Women Who Resist Medical Eugenics, by Melinda Tankard Reist, is a book about women. It is a book about families. It is a book about resistance. It is a book about women who refuse to be told what they “should” do with their own bodies by healthcare staff, friends, and family.

It is a book of stories, of women’s voices.

All of the women in the book have chosen to continue pregnancies against medical advice. The medical advice is based on something about the pregnancy falling outside of the very narrow “norm” – the women’s disabilities, their “elderly” ages, a diagnosis (or misdiagnosis) of a fetus labelled “defective”. There is a woman with diabetes in her forties; a woman who chose to carry to term and birth two babies with anencephaly; women with babies with trisomy 21; women living with HIV; women with incorrect prenatal diagnoses of lethal conditions; a woman with lupus and a woman with MCTD and pulmonary hypertension; a woman with Scheurmann’s disease of the spine; a woman with severe asthma; a woman with cerebral palsy; a woman and man both with dwarfism; a woman exposed to rubella during her pregnancy; a woman with thalidomide-related phocomelia; and more.

I’ll start by letting some of these women tell their own stories, as this is the significance of the book as I see it:

d. a. marullo writes:

The next day I went to see my regular doctor whom I hadn’t seen yet. He was my general practitioner and I’d known him for eighteen years. I told him the news and he tightened up his face and looked at his paperwork while speaking.

“Well, you’re going to terminate, right? I mean it would be the smart thing to do!” I was so devastated by his words I almost started crying.

“I haven’t really decided anything,” I said. […]

“Well, the numbers add up, after all – your age and all. It’s probably not going to be normal!”

Teresa Streckfuss writes:

“He came bursting into our room and listened for Benedict’s heartbeat and said, “Okay, that’s all fine,” before awkwardly leaving us again. Lucky he left. If he hadn’t I might have screamed, “THAT’S ALL FINE? THAT’S ALL FINE? GET OUT OF MY ROOM! MY BABY HAS JUST DIED! IT’S NOT ALL FINE! WHAT DO YOU MEAN, THAT’S ALL FINE?” I know what he meant. Our ‘non-viable fetus’ had died, as expected. He failed to recognise that we had just lost a person, someone we loved.

Johanne Greally writes:

On returning home I went to see my doctor. I was totally unprepared for his reaction. “There will be no problem getting you an abortion,” he said. “You meet all the requirements on both physical and mental grounds.” “But,” I stammered, “I don’t want an abortion. I want a baby.” I felt shocked, belittled, and disempowered by him.

“Your back is unable to support just you, let alone a baby. You will never be able to carry a baby. You will be in a wheelchair by the time you are seven months.” It was true that my back couldn’t support me at that time, and I had been trussed up in a corset-type back brace off and on for over a year, so that I could not move around freely even without a baby.[…] All through the pregnancy my back continued to improve. I was now able to lift and bend, even chop wood by the time I was at the seven-month mark.

Heather Arnold writes:

The added pressure of a baby pressing on my lungs would cause more problems. This doctor also reinforced that the ‘standard of care’ in my condition would be to abort the baby. I told her immediately that abortion was not an option and that I would be carrying this baby as long as I possibly could. She encouraged me to go home and talk with my husband before making the decision, although my mind was already made up.

Leisa Whitaker writes:

I remember sitting in his rooms listening as he explained that there was a 25 percent chance that our child could still inherit the dominant achondroplasia gene and the dominant pseudoachondroplasia gene- a combination that they had never seen before anywhere in the world. They had no idea of what effect this would have on the baby – whether it would die soon after birth or if it would have lasting physical problems. They had absolutely nothing to go on. Having told us this, the specialist offered us an abortion. He asked us to think about whether we wanted to bring another dwarf baby into the world.

Rosaleen Moriarty-Simmonds writes:

We learnt this one day when my mum went to pick Deborah up from school, only to find her in floods of tears. The children in her class had been asked to tell a story about someone that they admired. She talked about her elder sister, who didn’t have any arms or legs, and Deborah was told off by the teacher for having “a horrible imagination!”

Jo Litwinowicz writes:

I heard mum calling dad to the phone and she asked me to repeat what I had said so I told them that I was expecting. Their reaction devastated me. “Well Jo, that news has turned this day into a tragic day. You are an irresponsible and stupid girl.” They might as well have kicked me in the stomach; I was so upset that I slammed the phone down. If my parents’ reaction was bad, what chance did we have with complete strangers?

When I went to see my doctor at his antenatal clinic his first words were, “God, you were the last person I thought I’d see here.” “Sorry to disappoint you,” I replied. He asked how we felt about the prospect of becoming parents, and we told him that deep down we had both secretly pined for a child and it was the greatest news ever. His response was to say that throughout my pregnancy, if I ever wanted an abortion, he could arrange it. […]

The next day there was a knock at the door and this woman said she was from Family Planning and could she come in for a chat. I joked, “You’re a bit too late.” She went on, saying how hard it was going to be to raise a child in my condition. I said, ‘What condition? You don’t know me and what I’m capable of. […] She calmly went on, “You do realise that when your child can walk and talk it will come to you and say, ‘I hate you, mother, because you can’t talk properly, you dribble and you’re in a wheelchair and I want a new mother.'”

Note that the stories are much longer and fuller than the bits I have picked out, which concentrate on ableist attitudes. There are many parts focusing on the authors’ happiness also!

One of the most powerful tools in our toolkit as PWD is to read the world in ways that others do not; to take tools for one purpose, and to use them for our own; to resist the appropriation of our stories for the political purposes of others. To this end I am also making a conscious choice to not review the introduction or closing words of the book here.

There are many stories in this book, and it is a book with multiple possible readings. I have deliberately avoided reading any other reviews while writing mine. I imagine that some may choose to read it as an anti-choice screed, just as some forced-birthers choose to see posts on FWD about the effects of ableism on pro-choice discourse as “on their side”. I choose not to read it that way. Only two or three times while reading did I get an sense of the voices possibly self-identifying as politically “pro-life”, and those moments were brief. One, who used the words “I chose life”, may or may not have been playing into the political nature of the phrase; either way, she is more than entitled to use the phrase in regard to her own personal choice. The other mentions in passing that she had worked at a “crisis pregnancy centre”, gave me a bit of a chill. But these are not the majorities of the stories, nor were they the most important or prominent parts of the stories in which they appeared.

The women who speak about their religion influencing their decisions, the women who touch on much-misused catchphrases like “I chose life”; these particular sentences did not resonate with me. However, not everything in this book needs to resonate with you for the stories to have power, for the experiences to speak. It was particularly noticeable that in some cases the medical staff just assumed that the choices to continue a pregnancy must be based in obedience to external religious edicts. The stories most of the women tell are quite different; their decisions were individual and deeply nuanced, not based in unquestioning submission to some sort of “authority”. Sometimes their religious beliefs were involved, and sometimes not; in no story did I read the story-teller proclaiming that other women’s choices should be legally constrained or outlawed. They are telling their own stories. I trust readers at this blog to handle the nuance, even as I might not trust those who bring their own agendas to the work.

Another issue I have with the book is the occasional mention of the experience of parenting a child with a disability as transformative for the parent. While this is not necessarily untrue, I think it needs to be written very carefully so as not to dehumanise or objectify the child, turn the child into an “inspiration” instead of a full, rounded person. I’m not sure whether that line was quite crossed – I’d have to re-read in detail, and the book has to go back to the library today! – but it skated close here and there.

If you’re looking for a statistical representation of how often prenatal diagnosis is wrong or misrepresented or used to pressure women, this is not the book for you. This books isn’t statistics; it’s lived experience. The stories have been chosen because they represent those times that women are pushed around or lied to or subject to misdiagnoses and poor medical care. The issue in the book is not whether this is a majority or minority experience, but that it happens at all, and that it can be handled very, very badly. Given the number of readers and writers on this site who’ve been stampeded in the healthcare system, I think many of us do have a sense of what it’s like to be on the receiving end of that treatment. In these stories, the stakes are high: the result of the stampeding, unresisted, would have been, in each case, a wanted pregnancy lost.

But I am overemphasising my nitpicking and reservations, here. In short, I recommend this book highly. The stories of disabled women, in particular, I found absolutely riveting. Their stories are vivid, immediate, at times horrifying, but more often joyful. The joy can be transcendent, yet entirely ordinary: the joy of a wanted baby, the magnificence of a disobedient woman.

I would love to see a followup book, in a similar format, with a broader scope. I’d like to see a book including stories from parents in non-Western countries; from trans or nonbinary parents; from very young parents; from undocumented immigrants and refugees and Indigenous people. A book including more analysis of the intersections of class and nationality and gender and race and queerness with disability could only be stronger. Whether we’re likely to hear that book from Reist is, well, a matter for debate; but she doesn’t, nor should she, have a monopoly on this type of story. As it stands, I am left thinking that it is only the privilege that the women in this book have – mostly white, mostly relatively wealthy – that allowed them to resist as they did, to survive as they did. The stories in this book are particular types of stories, and do not represent the realities of all pregnancies labelled “abnormal” for one reason or another.

However, even in its current form, I think this book should be considered a basic primer – for healthcare professionals, for pregnant people, for anyone else interested in disability and rebellion. It is not a primer about chromosome diagrams or placental configurations or how to eat or what to expect; but a primer about lived experience. The book covers what medical textbooks and pregnancy self-help books do not: the intimate, touching stories of women who rebel against crushing ableism.

Above all, Defiant Birth, to me, is defiantly pro-choice. It’s a book about reproductive justice. This book deserves its place in the stable of pro-choice works dedicated to the equally valid and necessary choice to not have a baby.

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.]

“Bad Activist” moments

activism, disability activism, feminism, gender, identity, mental health, resistance, social attitudes

I read a blog post recently by a woman with muscular dystrophy and her experiences going out to eat in restaurants. The author mentioned how wait staff rarely give her a menu, or give her a children’s menu instead of the standard menu. When this happens, she often just looks on with her mom’s menu rather than asking the wait staff to give her her own adult menu. She described that as a “bad activist moment.” While I enjoyed and appreciated the rest of the post, and marveled at the ableism she routinely experiences – wait staff giving her a sippy cup to use?! – the idea of “bad activist moments” particularly stuck with me.

A “bad activist moment,” if I understand it correctly, is a potential opportunity to highlight ableism, educate TABs on the abilities of a PWD, and instruct people on the correct way to interact with a PWD. It could also apply in other contexts – the opportunity to highlight and correct patriarchal or sexist behavior, or racist behavior, or ageist behavior, or any number of other discriminatory and oppressive behaviors. In this context, the person experiencing or observing the problematic behavior is a member of the class negatively affected by such behavior, but it could also, for example, extend to me as a white woman observing behavior that discriminates against Latinos.

I definitely think this idea has value and recognize that the term “bad activist moment” is likely shorthand for “an identifiable moment of opportunity for direct personal activism that I didn’t take” rather than a judgment on whether the person is actually at heart a good or bad activist. But I’m concerned that framing it as a “bad activist moment” suggests that to be a good activist, we must speak up and speak out Every Single Time we observe negative behavior, not just that affecting PWDs, but that affecting or oppressing any minority group or marginalized class. I know that I do not do this and if I did, I would likely suffer significant consequences. I feel I’m already on the edge of being characterized (and thus dismissed) as the girl who has a problem with everything and is hyper-sensitive on these issues and cannot in any way ever take a joke ever – and that’s with me pointing out about 1 in ever 10 problems I see. I worry that if I devoted more time and energy to those issues, I’d be pigeonholed as “politically correct girl” and nothing I said would be taken seriously or considered.

More seriously, though, it is infinitely more risky to raise issues of discrimination and oppression when you are part of the group that is being discriminated against or oppressed. Not only might this require someone who is “passing” to identify and out themselves, but explicitly claiming membership in the targeted group can lead to further discrimination and marginalization. In the racial context, it’s often characterized (and thus dismissed) as someone “playing the race card.” I’m not aware of a similar term in the disability context, but the trope of an “uppity” activist who “thinks they’re entitled to something” extends to all oppressed or marginalized groups. Identifying as such opens a person up to further attacks and discrimination and even physical violence.

Even without these very real risks, I believe that we should all allow ourselves the option to pass up potential opportunities for activism while still considering ourselves to be good and powerful activists. Even if all we did was live our lives as PWDs, that in itself would be an activist act, demonstrating that PWDs have interests, passions, relationships, emotions, LIVES. We would qualify as activists even if we passed up every single potential opportunity to do affirmative activism work.

My ultra-wise co-contributor Chally once told me that taking care of myself was a feminist act. Placing myself at the top of my priorities – even though I am a woman and “should” prioritize caring for others or building a family, even though I am a PWD and thus “have minimal value or worth to society” – is an act of activism. Can I do more than that? Yes, and I do, but I always try to keep in mind that my activism is and should be secondary to my own well being. In part because I’m not going to be able to do any activism at all if I burn out or hurt myself physically or mentally doing activism work. But also because the simple act of prioritizing myself is, in itself, activism.

So take the opportunities for activism that you feel you can. And let the others go by. And remind yourself at the end of each day that you were a good activist that day.

I Hope You Feel Better

blaming, language, normality, resistance, social attitudes

I hope you feel better.

They mean well. They always do. It’s what people say when they hear someone they know is in pain or ill or uncomfortable. I’ve learned that tears and “Why would you say that to me?” while an accurate reflection of how it makes me feel is pretty much guaranteed to lead to all sorts of unpleasantness I don’t want to have to deal with.

Whoa where did that come from I was just trying to be nice. What’s wrong with her? Can’t you just take it for what it’s meant?

I really can’t. For one thing my brain doesn’t process subtext quickly enough to have conversations at full neurotypical voice conversation speed — I’m doing the best I can keeping up with the text alone. But I don’t wear a sign that says “I am not good at auditory processing.” If I did I’d be explaining that all the time too. I don’t like talking that much.

(What’s that mean? It means I hear fine. I hear everything. ((When tinnitus isn’t in the way meh.)) What I have trouble with — and sometimes it’s harder than others — is pulling the thread of one person’s voice out of everything else that’s coming in through my ears and turning sound into meaning. If there’s a television in my visual field this task gets harder. This is why I take books to restaurants; I usually can’t make out what the person I’m eating with is saying anyway.)

Well. I can take it as it’s meant when it’s someone who doesn’t know me. When the person saying it doesn’t know that I have a disease that leaves me in pain all the time and exhausted all the time and makes it hard to walk and think and work and all the Weird Shit that goes along with it I can accept “I hope you feel better” because it doesn’t actually mean anything. It’s just politeness.

When the person who’s saying it has heard me or read me (often we’ve also had the conversation amndaw wrote about in her Who Hates to Hear They Look Great? post) it hurts. Lately I’ve been not eating much and throwing up a lot and it’s not a lot of fun. I mentioned that I didn’t feel good at my LiveJournal and every comment was a form of this. I even got one in imperative voice: “feel better soon.”

I have a chronic disease that isn’t curable and I have not heard of it going into remission. This is not temporary. Sometimes the symptoms are excruciating. Sometimes the symptoms aren’t so bad. They never go away. Even if I never feel any better than I do right now my life will still be worth living and I’ll still be happy and I’ll be okay because I work really hard at living my life and being as happy as I can in it. For me it includes accepting that I will not get better. It also includes some complaining about feeling rotten because accepting that I won’t get better doesn’t turn it into rainbow-flavored unicorn shit.

Demands that I feel better discount all that.

I want to tell people to please not say that to me. But I know how it’ll go. I’ll be the mean cripple yelling at people who were just trying to be nice. So I mostly don’t say it.

Bonus Section:
Since most essays from marginalized people on the topic of Insensitive Things Privileged Folks Have Said To Us will garner at least one comment along the lines of “Well if you’re going to tell people they shouldn’t say whatever how about you tell us what we should say.” At which I’m like thanks for the derailment attempt that’s so thoughtful! I am so delighted to do this work for you you have no idea. But I do actually have something here. An expression of sympathy that doesn’t include a request or demand that I do something impossible is always nice. I’m a really big fan of “That sucks. I’m sorry you don’t feel good.”

Disability 101: Treatment Suggestions and Why They Are Not a Good Idea

101, autonomy, blaming, bodies, identity, life changes, normality, resistance, shaming, social attitudes

I suggested a treatment/”cure” to a PWD for her/his/zie’s condition, and they ignored my suggestion/did not throw themselves at my feet with gratitude/got upset. Why? I was only trying to help!

Many people who do not live with chronic health issues, perhaps in a spirit of wanting to help those they know who are in pain, disabled, chronically ill, or affected by a neurological or mental health condition, may suggest different treatments or ways that they believe the person with the condition, illness or disability should use to “get better.” Many PWDs and chronically ill people, however, have experienced this exact process before, and often to the point where such “well-meaning” pieces of advice get…well, annoying; a stranger, acquaintance, co-worker or relative might suggest something that has been suggested many times before. Such “well-meaning” suggestions may imply some very different things to the PWD, chronically ill person, person with a mental health condition, or non-neurotypical person, namely:

…that they cannot be trusted to manage their own health, disability/disabilities, or course of treatment. Many people with disabilities and chronic illnesses have found treatments that improve their quality of life. Even with these treatments, they will probably still remain disabled/ill or still have their condition; the treatments that they have worked so hard to find, additionally,  most likely work for them. It is not your job, whether you are a friend, relative or other person concerned for the PWD’s “well being,” to bombard them with suggestions for different treatments, or push them to “just try” treatments (some of which may even be questionable in their effectiveness). There is a long history of people with mental health conditions, the non-neurotypical, persons with disabilities and chronically ill people being forced into undergoing treatments, into hospitals, and even into institutions by able-bodied people who presume that those with the health problems are not pursuing the “right” kind of treatment, and that this must be corrected—even at the expense of the individual’s humanity. Unless you are a professional, doctor or other specialist working with the person who has one of these conditions, and/or unless the treatment that they are undergoing is actively damaging their health, it is probably best to keep your recommendations about what course of treatment that you think the individual should be undergoing to yourself.

…that you are frustrated by the individual’s inability to “get better.” You may not say or even think this outright, but in some cases, actions speak louder than words.

…that you want to be given cookies/be thrown a parade/told you are fantastic for suggesting something that, in actuality, has probably been suggested to the individual many times before. In its more severe forms, this tendency is known as the “savior” or White Knight complex. Here’s the problem: Disability, chronic illness, mental health conditions, non-neurotypicality and pain, for the most part, are not things that can be cured. They can be dealt with, but it is oftentimes up to the person with the condition—-with appropriate support from family and friends-—to decide which treatments he/she/zie would like to pursue. Though you might like to, you cannot be the affected person’s able-bodied savoir. It is not the job of PWDs/chronically ill people to make you–an able-bodied person–feel better about yourself, whether by following your every treatment-related suggestion, or being uber-thankful whenever you deign to offer well-meaning advice that is related to their condition(s).

In addition, finding the right treatment(s) to improve quality-of-life can be a long, tiring, and agonizing process for many persons with disabilities, chronic illnesses, health conditions, mental health conditions, and neurological conditions. For many, starting an entirely new treatment for their condition(s) would, on some level, entail starting all over again; since getting to the point to where they are able to function and where their quality of life has been improved takes a long time, do you think that many non-able people would want to start from square one again to “just try” a treatment that’s been suggested, offhand, by a “concerned” person in their lives, that might not even work for them—-or that, in some cases, may make them worse? Because of each individual’s limitations when it comes to things such as time, finances, energy, tolerance/intolerance of additional discomfort or pain, or medication/treatment side effects, starting over with a “new” treatment might actually be a huge inconvenience for some people with disabilities, chronic health conditions, non-neurotypicality, or mental health conditions.

An earlier version of this piece was posted at Faces of Fibro on July 6, 2009.

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.