Tag Archives: parenting

Quoted: Susan Wendell

Feminist organizations have become more aware of the need to make their activities accessible to women who use wheelchairs, women who need written material in alternative formats, and women who need Sign Language translation, but much feminist practice still assumes a consistently energetic, high-functioning body and mind, and certainly not a body and mind that are impaired by illness. Moreover, in their writing and organizing, most feminists still assume that feminists are giving, and not receiving, care, and that all significant contributions to feminist movements happen in meetings, at public events, and in demonstrations on the streets. The accepted image of a good feminist still includes handling paid work and family responsibilities and having plenty of energy left over for political activity in the evenings or on weekends. In these circumstances, women with chronic illnesses are likely to find it difficult to participate in feminist movements or to identify themselves as feminists.

— From “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities” (originally published in the Fall 2001 issue of Hypatia)

Recommended Reading for October 26, 2010

firecat at Party in my head (DW): How To Be Sick

I went to this talk because I have chronic health conditions that affect my mobility and energy levels, and I am a caregiver for my mother, who has Alzheimers. I’m a Buddhist and my study of Buddhism has helped me work through grieving over these things and building a life around them, and I wanted to hear a talk that specifically addressed how Buddhism can help a person deal with chronic illness. I figured that I already knew a lot of what she was going to say, but I thought I’d learn a few things and find out that I’m already doing a lot of what there is to do, and that would help me feel more confident.

beautyofgrey at The Truth That Came Before (DW): On invisible illnesses and harmful judgment

Our illness is invisible. At first, even I did not want to see our illness. I wrote it off as “discipline problems” or “unresolved anger” and resolved to become a better disciplinarian, better parent, and to slowly count to ten. I assumed it might be due to changes in our life. Later, doctors did not want to see our illness. Everyone had a healthy weight and height. They wrote it off as “difficult phases” and assumed that the problem resided at home. They asked us to wait a year or two before we considered whether the chaos, aggression, and emotional stress weren’t just tricks before our eyes. Our illness was invisible, because we were not “that bad off”.

kankurette at The Hidden Village of Aspergers: Happy Mental Health Day. If “happy” is an appropriate adjective

I’d always been a melancholy kid. Think Marvin, Eeyore, Cassandra, the Ides of March. I just went along with it. In my teenage years, I had moments where I was suicidal, and I started self-harming at 14, but I just put it down to teenage angst. Depression wasn’t an illess, I believed. It couldn’t happen to me. Even though my mum turned into a wreck after my dad died and spent days in bed, even though she had panic attacks in front of us and seemed to be more temperamental and headachey than usual, even though the doctor gave her pills to take, I just thought she was sad; I didn’t realise she was ill.

K__ at Feminists with FSD: Interesting posts, some time in October

I have a feeling we’re probably going to see another spike in coverage about Flibanserin, (I’m thinking certain feminist websites are more likely to cover it than others, and maybe some op-ed pieces in mainstream newspapers, as well as others) and when we do see it, I can guarantee you it’s going to get real ugly, real fast. Everyone, get your bingo boards ready to go if you’ll be doing any reading on the matter. If you see any new and bizarre arguments about FSD and why no woman, anywhere, ever, needs medication for sexual desire problems ever, in comment sections to the inevitable anti-Flibanserin posts, let me know; we may have to produce a version 2.0 if we keep running into the same old shit again and again.

Lisa at Sociological Images: What is Intelligence?

We often think that intelligence is somehow “innate,” as if we are born with a certain IQ that is more or less inflexible.  These scores suggest, however, that our potential for abstract thought, though it may be located in the biological matter of the brain, is actually quite malleable.

(Note: For a further discussion of the concept of “intelligence” and its history, see kaninchenzero’s AWP post on Intelligence.)

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.

Dear Imprudence: May I Burden You?

Gentle Readers!

I love advice columns almost as much as s.e. smith, and I especially love ou’s deconstructions of them, so I get pretty stoked when ou passes them along for the rest of us to take a crack at them.

This one comes to the the New York Times’ Social Q’s from a mother who is getting a little bothered by the imposing looks of strangers when they take her daughter out in public:

Our 19-year-old daughter is disabled. She’s ambulatory, but walks with an unusual gait and is cognitively disabled. Wherever we go, people stare at her. Not glance, they stare. Recently we were out to dinner, and the woman at the next table couldn’t take her eyes off her. I wanted to say: “This is not dinner theater, and our daughter is not your entertainment.” But I didn’t. Most times, I just stare back and hope the gawker gets the message. Is there a better way?

Paulette Mann, Rye, N.Y.

I get extremely uncomfortable and irritated with people who can’t manage to be polite and respect the privacy of other people. “Othering” is a concept that riles me pretty good, and othering people based on circumstances beyond their control is right up there on my list of things that will get you “unfriended” or “unfollowed” in a keystroke. Beneath that is treating people with disabilities as if they do not have a right to privacy when they are in public with you. As if their existing in a manner that you find abnormal is somehow negating their right to eat lunch without you staring at them. Or asking them awkward questions about their condition. Or talking about them with your friends as if they aren’t right there.

I can only come close to imagining what Ms. Mann’s emotions must roll through when she wants to protect her daughter. How it must feel to want to shield her from all that uncomfortable awfulness. She is right to react the way she does, and to feel the way she does. Most of us with children want to do whatever is in our power to protect our children while we raise them to independence (or even in this case, possibly she doesn’t live at home and they are just enjoying some time out together). Here, Paulette is asking for advice on how to help with that deflection. People often turn to advice columns because it seems that they have exhausted other avenues. I applaud Paulette, actually, for taking this extra step, because I know how it feels to want to protect your child when it feels as if you can not.

I feel like the response that she received was anything but helpful to the situation that Paulette Mann drew out for us. Let’s have a look:

First off, let me apologize to you and your daughter on behalf of all the Lookie-Loo’s out there. That they don’t mean any harm is beside the point; you shouldn’t have to deal with them.

Well, Philip Galanes starts off OK. He sure got that right! *searches for cookie*

But now I’m going to impose another burden on you (as if your family weren’t shouldering enough of them). The next time you encounter a rude rubbernecker, like the wide-eyed woman in the restaurant, just smile and ask: “Would you like to meet our daughter?”

Yes. That sounds like it is exactly what she wants to do! Paulette Mann wrote to you, saying that she wants people to leave her daughter some privacy, and you want to have her now force her daughter to meet strangers! Here! Shake her hand! Come over to our table, invade her space and maybe you can ever startle her and frighten her by being a stranger! Without knowing more about this young woman, all I can say is that this is terrible advice to give to a mother who is asking for a police way to tell a stranger to piss off while her family is trying to enjoy a nice meal out. Without the Britney Spears following (a woman in another group of people I feel have invaded privacy).

Not to mention, let’s place more burden on a caregiver (because, if I don’t talk about the caregivers someone is going to run in here and call me insensitive). A parent needs another burden, amirite? As if we are not keenly aware of all the burdens we carry as parents. All we are expected to bear as we guide a child to independence. As a parent of a seemingly AB/NT child, I can not begin to understand what it is like to have that extra layer of responsibility raising a child with disabilities, but I can understand parenting from a disabled parent perspective. The pieces are different, but I am willing to bet the energies even out as they fit together similarly. “Impos[ing] another burden” is just what this mother needed, for sure. Smashing advice. Brilliant.

Oops. Was that sarcasm?

My hunch is when they shake her hand, they’ll begin to see her as a human being — with feelings and everything — and not some curiosity. Maybe then they’ll show you some of the respect (and privacy) you deserve.

It’s asking a lot, I know. But it may make a difference.

I don’t know that the best way to demand privacy is to invite others to invade it. I don’t know how that would affect her daughter. I don’t know how that would affect Paulette’s energy stores. I don’t know a how to do proofs on a Geometry test.

What I do know, is that, as a parent, this advice would have really felt hollow and a tad overwhelming. I don’t know that Galanes really had a handle on what he was suggesting. I can not imagine introducing a child to everyone who stares at her, and I can’t imagine that it would be a positive situation. Perhaps I am way off base, and I am willing to admit that if I am wrong. My own Kid would not enjoy that kind of invasion. Without knowing Mann’s daughter I couldn’t say for sure. But I am willing to wager that it isn’t a burden that Galanes had any right to place on her at all.

A special thanks to bzzzzgrrrl for the link to this letter!

On Centring Caregivers in Disability Discourse

It’s really off-putting when a group of disabled people are trying to have a conversation and a caregiver butts in with “you’re wrong. I know, because I care for someone with such and such a disability”. This makes me squirm. Even worse are those disability organisations or charities that have only parents and caregivers on their boards. “Oh, but it’s all right, my brother has this condition. In fact, we all have family members with this condition!”

It’s troubling enough that there are so many such organisations out there that just don’t have anyone who actually has the disability concerned on their boards – it’s as though we can’t speak for ourselves or have unique experiences people who don’t have our disabilities can’t relate to or advocate about! – but that’s not directly what I want to talk about today. I want to talk about who gets to run conversations about disability and who gets to run the narratives. All too frequently, abled caregivers and family members are centered in conversations that really ought to be run by and focus on disabled people.

The thing is, abled caregivers and family members, while pretty involved in the lives of those they are caring for, have their own perspectives, which is great. But treating those perspectives like substitutes for those of disabled people themselves makes me really uneasy. So when the perspectives of disabled people get pushed out because carers are brought to the forefront – in legislating, in daily conversation, in interviews – for me, that’s a clear example of ableism run rampant. Because it seems like those in charge think that disabled people aren’t worth listening to or are incapable of informing their own opinions.  The dominant narrative is that abled people are better worth listening to, and I get sad when abled carers and parents just don’t seem to realise that they’re dominating conversations at the expense of disabled people. (It reminds me of those times when men start talking loudly about feminism and everyone else in the room has to keep quiet, is denied a chance to speak.) And “advocacy” of disabled people shouldn’t be at the expense of disabled people.

Of course, it’s usually particular kinds of caregivers who get centred – who centre themselves – in these conversations: abled ones. As ever, it is those with multiple roles who are pushed to the margins, because their existence is held to be just too complicated to deal with. I think acknowledging disabled people who are also caregivers would be a really good start to decentralising the place of abled caregivers in these conversations. Moreover, acknowledging the multifaceted nature of experience brings out the nuance: we really have to engage with the dynamics of different people’s situations here – what are the power dynamics like when you’re both in a position of power and disabled? how do these conversations apply to you? – rather than defaulting to listening to abled parents and caregivers.

Now, I’m not saying that abled caregivers and such should have no place in conversations about disability and ableism, you understand: I’m saying that such folk have dominated conversations about these matters. There is a place, it just shouldn’t be a place that replicates the hierarchies present in society already: hierarchies around who gets to speak, who gets to do the representing. The effect of this – and you can look at a range of newspaper articles or documentaries or whatever you please – is that disabled people get silenced. The effect is that, more often than not, it becomes all about portraying the caregiver as angelic and the person cared for as a burden they have kindly taken on.

And that’s not on.

[Cross-posted at Zero at the Bone and Feministe]

Recommended Reading for 12 July 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

BBC News: Families with disabled children ‘struggle to pay bills’

Srabani Sen, chief executive of Contact a Family, said: “Many families with disabled children are in financial dire straits.

“Everyone has been hit hard by the recession but families with disabled children were already having to cope with a harsh combination of extra living costs and the difficulty of holding down a job and caring.

“These financial pressures have been worsened by the economic slump and have left many at breaking point.”

Researchers found that 23%, almost one in four, had to turn off their heating to save money and one in seven, 14%, are going without food.

Politics Daily: Thousands of Soldiers Unfit for War Duty

In an unmistakable sign that the Army is struggling with exhaustion after nine years of fighting, combat commanders whose units are headed to Afghanistan increasingly choose to leave behind soldiers who can no longer perform, putting additional strain on those who still can.

The growing pool of “non-deployable” soldiers make up roughly 10 percent of the 116,423 active-duty soldiers currently in Iraq and Afghanistan. Thousands more Army reservists and National Guard soldiers are also considered unfit to deploy, a growing burden on an Army that has sworn to care for them as long as needed.

“These 13,000 soldiers, that number’s not going to go away,” said Brig. Gen. Gary Cheek, who heads the Army’s Warrior Transition Command, which oversees the treatment and disposition of unfit soldiers. “If anything, it’s going to get larger as the Army continues the tempo it’s on.

“This is an Army at war.”

Laura Hershey: Some Thoughts about Public Space

I myself am a very noticeable presence in any public venue. I use a power wheelchair which I operate by blowing into a tube. I have more tubes going into my nose, connected to a mechanical ventilator, which pumps air into my lungs as I breathe. At symphony orchestra concerts, during pianissimo passages, I’ve become acutely aware of the mechanical sounds emanating from my respiratory equipment. My self-consciousness has sometimes veered close to embarrassment, but I’ve reminded myself that I have as much right as anyone to be in the presence of that great music.

Change.org’s Environment blog: Going Under For Surgery? Doctors May Be Going Green Too

So I’m all for rooting out the last vestiges of wasteful carbon from every last corner of our society. But, I have to say, this study makes me slightly nervous. “Going under” is a dangerous procedure, and I’m not sure I want my doctor thinking about the fate of the planet at a time he should be focused solely on my own fate.

Now, obviously the doctors themselves were quick to say that patient safety should and will always come first when choosing the correct drug. But, regardless, doctors who are concerned about the environment would want to know this information, they contend.

SPOUSE CALLS: Born on the 4th of July

In the headline there was no name, just a number: “1000th GI killed in Afghanistan.” I skimmed the story: Name not yet released pending notification of next of kin.

Numeric milestones seem so arbitrary. What makes 1000 more significant than 999? Mourning families don’t care about the math.

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[@]disabledfeminists[.]com

Seven reactions to reviews of Rachel Axler’s “Smudge”

On-stage scene from the play. A man and woman stand looking into a pram, the woman with a many-limbed plush toy. The pram has a wild series of tubes and wires snaking out of it.

I’ve been shaking my head over the press for Rachel Axler’s new hipster-ableist play, Smudge. Here’s a lightning tour, with my response

s at the end. Emphases are mine.

In ‘Smudge,’ Baby’s disabled, and mom’s not much better, from Newsday:

Most couples look at the sonogram of their impending baby to see whether it’s a boy or a girl. But when Colby and her husband, Nick, scrutinize the picture of the life in her womb for an answer to the “what is it?” question, they are appalled to realize that they mean it. Literally.

Rachel Axler’s “Smudge,” the very dark 90-minute comedy at the Women’s Project, aims to be part horror movie, part domestic relationship drama. Their baby, a girl, arrives unbearably deformed, with no limbs and one big eye. Nick (Greg Keller) bonds with the unseen character in the pram encircled with tubes, and names her Cassandra. Colby (Cassie Beck, in another of her achingly honest performances) attempts to protect herself from the agony through brutal humor, maniacally snipping the arms off baby clothes and taunting the “smudge” until “it” miraculously responds. Or does it? […]

BOTTOM LINE The unthinkable, faced with wit but not enough depth

More, from Variety:

Title comes from the first word that comes to mind when Colby (Cassie Beck) gets a glimpse of her infant daughter, grotesquely described as having no arms or legs, an undeveloped skeletal structure and only one (beautiful, luminous blue-green) eye in her misshapen head.

More, from Time Out New York:

She is nearly indescribably deformed: a purple-grey mass of flesh and hair, with a single, disconcertingly beautiful Caribbean Sea–colored eye. Her horrified mother, Colby (Beck), describes the child as looking “Sort of like a jellyfish. Sort of like something that’s been erased.”

More, from SF Examiner:

Continue reading Seven reactions to reviews of Rachel Axler’s “Smudge”

Recommended Reading for October 29

Sexy with a Disability:

It’s not like there are many role models out there in the media. The disabled are rarely portrayed as sexy. Brave, yes. Melancholy, sure. Angry about their lot, check. Objects of concern and pity (stop calling me “special”!). But sexy? No. The hot babe who gets the guy isn’t limping toward him, gnarled fingers grasping his strong shoulders as they kiss. And if she is in a wheelchair, it is only temporary.

Ally Issues: Feeling Useless:

At the same time, I have this nasty prickly little feeling inside me which tells me, “what right do you have to write about this issue? You’re perfectly able-bodied. You’re so able-bodied you’ve been holding write-ins at the Paperchase Cafe for years. It’s not like you’ve ever done anything to be a good ally to people with disabilities.”

The horrible thing is that the voice is right.

I’m wondering though, if it would be worse if I let the voice hold me back. That I have to wonder is, I think, pretty bad. Able-bodied people can talk about disability issues, and do, all the time. I’ll probably fuck up at some point, but that happens, right?

A piece of ableist language I could really do without

It’s that dreaded question, upon meeting: So, what do you do for a living?

It hurts. And what’s worse, people often don’t stop there; they keep on asking. ‘Oh, you don’t work? Why not? So are you on the dole then? Are you looking for work? But how do you afford to live? A pension? What are you on a pension for?”

Honestly, sometimes I just want to tattoo it on my forehead: “Hi, I’m Cinnamon Girl, and I’m insane. Thanks for the tax dollars!”

You see, I have a psychiatric disorder, and receive a disability support pension as a result. I don’t work to make my living. I also don’t want to disclose to every last person I meet that I have a mental illness. But, with that loaded innocent question, that’s pretty much what I’m forced to do.

Bones and Invisible Disability:

To be clear, Brennan’s Asperger’s is never directly mentioned by her co-workers. Her social awkwardness, typical of the syndrome, is frequently the punchline of jokes or leads to the repetition of one of Brennan’s favorite phrases, “I don’t know what that means.” However in interviews, Emily Deschanel, the talented actress who plays Brennan, often states that her character does have a mild form of Asperger’s.

The lack of awareness Brennan’s co-workers show about her Asperger’s, leads me to believe it could be considered an invisible disability. At first glance, Brennan appears “normal” and the only way her co-workers would know about her Asperger’s is if she tells them and then proceeds to advocate for her unique needs. In fact, she has made steps towards self-advocation already, at one point last season asking her psychologist, Dr. Lance Sweets, to help her understand social cues and to read facial expressions.

Dealing with disability is fine – it’s the phonecalls that shit me!

Peopel who don’t know you gasp and think life must be unbearably dificult, draining, and emotionally tough when you have a child with a disability – but to be honest, it’s the endless phonecalls, wrangling and organisation that can shit me to tears. Picking up Miz M from childcare yesterday, where she beamed delightedly and kicked her little legs and waved her arms, that was lovely. Trying to help her eat slices of mango was sticky but, hey, just fine. Making the fourth phonecall to the same organisation to try to organise for her mobility device to be fixed, on the other hand, brought a hot flush of frustration to my face and tears of irritation to my eyes. Put on hold while the woman I needed to speak to was on another call, after which the original unhelpful phone-answerer got back to me and said oh, she’s left now, and won’t be back till tomorrow. This, at 9 am.

Recommended Reading for October 27

I’m writing this four days before you’ll see it. (I write most of my posts from the past, due to my schedule.) I mention this so people know that I’m not ignoring recent posts, I’m just not seeing them yet.

Disability & Desire: The Dance of the Heart – This is a pointer link. The actual article is PDF.

From the article:

In 1996, at the age of 24, I found myself in hospital, with empty walls and broken dreams colouring my days. My partner at the time, Janine Clayton, and I were caught up in local taxi violence in Cape Town, South Africa, with members of rival taxi organisations firing at each other. The driver of the taxi we were in died, and my spine was severed by a bullet. My body told me long before doctors had the courage to admit it. I was paralysed from the chest down. During those endless afternoons with little else than my mind to entertain me, I contemplated the extent of my loss. Perhaps what struck me deepest at the time was my conviction that I would never be desired or loved again. I felt that my body had become damaged goods, my sexuality erased.

As time went by, I began to dismantle my perceptions by analsying their origins. I recognised that my mental picture of a person with a disability was that of someone in need of care, someone to be pitied, someone who certainly had no real claim to love or any kind of fulfilling life. The basis of my beliefs was largely informed by society’s consensus on people with disabilities … these were people who were mostly invisible, unless as beggars on the street or patients

When Simply Stating Your Truth Isn’t Enough:

What matters, then, is what you do with what you call facts, experiences, truths and ideas. It’s how you handle your perspectives on gender, race, ethnicity, class, and disability. It’s the way that you align the facts (or not) with societal preconceptions about those who are somehow “different.”

It doesn’t matter whether or not you, personally, don’t share the stigmatizing impulses that lead to discrimination and hatred; members of your audience most certainly do. As an artist/performer/writer/…, you have a responsibility to treat those facts in such a way that you don’t perpetuate the beliefs that enable harm. You might even take on the responsibility to change the way that people think and act. Or, then again, perhaps not.

Accessibility: The Soundtrack of my Life

We would never expect the average able bodied person to push themselves to the point of pain to participate in a public event. Whether I am watching my son play hockey or considering taking my boys to the Santa Claus parade, I must consider how much pain I am able to live with to participate. Differently abled parents are no different than able bodied parents. We want to be a part of our children’s lives and yet the barriers that exist often make this impossible.

Those that parent with a disability also bear the social stigma of being unfit. Social services has intervened on many occasions because of questions about our ability to parent. Disablism in this case is supported by concern for the children. It never occurs to many, that if the world were more accessible, that there would be no reason for concern. The fault is not with the body in question but with the makeup of the world.

Pain vs a Life:

Friday morning the group I was with wound up discussing a scenario of tension between the demands of being healthy and the desire to live life. I’d love to have both good health and the ability to pattern my life in the manner I want. I don’t. (And I would argue that none of us really do.) I live in a body that will experience pain if I try to do too much. I consider myself lucky to know about where that line lies. And sometimes I choose to push and bring extra pain meds. And sometimes I choose not to push and to be pain free. There’s no magic formula. I try to balance the life I want against what I expect the physical costs of extreme activity to be.

And, this comment was left by Amanda of Ballastexistenz and I’m just going to C&P the whole thing because it is full of good reading material:

I’d like to present some links that could be useful further reading on these topics….

The first one is from The Perorations of Lady Bracknell. She addresses some really common misconceptions about the social and medical models. Her article is useful for people new to these ideas, many people not new to them, and especially anyone who has ever believed that the social model means impairments don’t cause problems on their own, or that the medical model is the model that good medical professionals ought to use. The link is Chestnuts Roasting on an Open Fire.

Then there’s some things by a writer named Cal Montgomery. She’s cognitively and physically disabled, but has been pressured by physically disabled people to pass as purely physically disabled (the same thing happens to me sometimes). She frequently criticizes the entire concept of “invisible disability”, saying that it makes it sound like the “invisibility” is happening as a trait of the disabled person rather than a lack of understanding in the particular observer. I see very few other people tackling that idea and I think she’s absolutely correct. She talks about it in a lot of places, but her two best articles on the topic are A Hard Look At Invisible Disability and Tangled in the Invisibility Cloak.

I’ve been challenged enough (told I’m making crap up, basically) when I say that autistic people who can pass for non-autistic are usually visible if you understand what to look for, that at one point I got fed up when writing a post that dealt with that, and wrote up a detailed description of precisely what combinations of things are visible to me that are invisible to people who have no idea what to look for. (I then got criticized for writing a “DIY autie-spotting guide”, but that was absolutely not my intention. I was just trying to be concrete about something to avoid being accused of lying.) For people who have trouble imagining how something could be invisible to them but visible to people who know what to look for, this post I wrote might be useful. (Note that I use a lot of terms in it to refer to other people’s perceptions, that I would never use myself.)

If you have links you think are relevant, don’t hesitate to email me: anna@disabledfeminists.com Please note my schedule means I may not see your email for a few days.