Yearly Archives: 2010

It Will Always Be The First Thing I Think Of

**TRIGGER WARNING FOR DISCUSSION OF SELF-HARM**

I’ve been under some significant emotional stress lately, more so than usual. And I’ve had a couple of incidents when I received some very upsetting news. Of course I’ve cried. Sobbed, even. And reached out to my friends and family and cared for myself in all the healthy and productive ways I learned in my years of therapy. Take a hot bath. Read a good book. Snuggle with the kitty. Get enough sleep. All that kind of thing.

But before that – before the tears even start welling up, much less spilling over – my mind flashes on an image of my left forearm. Sometimes it’s being slashed with a razor blade. Sometimes it’s being burned with a cigarette or the hot metal of a lighter. In one particularly vivid recent image, my left wrist was being smashed with a hammer. This happens in less than seconds, before any other reaction. It’s entirely unconscious and I’m often surprised by how quickly and vividly the images take over my consciousness.

I used to self harm a lot. I thought I’d made it up myself, back when I realized that scratching at one spot on my skin with a thumbnail would peel back the skin to expose glistening wet red pain. I quickly progressed to razor blades and learned the exquisite joy of making a perfectly straight line in my skin, imposing some kind of geometry and order on my out of control body that would hopefully extend into my increasingly disordered mind. I learned how pressing a hot lighter to the inside of my ankle would send a poker of pain straight up my body in a wave so powerful it drove out every other sensation or thought. I learned about long sleeves in summer, the trick of putting a painful cut on the inside of my wrist so it would throb every time I took my mittens on or off. My arms looked so bad people thought I was using heroin. (Even writing this out makes me want it.)

And then I stopped. (Not so easily, of course, lots of safety contracts and lists of health coping activities and techniques and medication and relapsing and all of that. But I stopped.) And it’s been … I don’t even remember the last time I did it. Over 10 years, certainly. Long enough that you can hardly see any of the scars unless you know exactly where to look.

But it is still the first thing I think of. My first unconscious innate reaction to stress or emotional pain or just feeling overwhelmed and drowned by my own emotions. It is always there, just under the skin, waiting for me to be weak enough for it to take over again. That’s why I will never trust myself enough to have a razor blade or an x-acto knife in the house – I know that if they’re there, I’ll lose my way sometime.

[I just turned my head and saw two straight pins sitting on the desk (I was mending a hem) and *boom* I see them plunging into my wrist, just near the bone. It’s not that I imagine the process of picking them up – my mind flashes straight to an image of me pushing it into my skin, with the idea that “this is right, this is good.” I can almost feel myself relaxing while I visualize it and then I shake my head and it’s gone and I’m disappointed in myself for even thinking of it.]

I’m beginning to think it will never stop. I may never do it again – I hope I never do it again, I intend never to do it again – but it will always be there. It will always be the first thing I think of, before there’s even time to think.

Recommended Reading for January 6th

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post.

Interesting posts, weekend of 1/3/10: Great linkfest at Feminists with Female Sexual Dysfunction.

WECT News: Michigan man lost wheelchair on Greyhound bus to Wilmington

Garth Ulmer was so excited to visit Wilmington he bought his Greyhound bus ticket six weeks in advance. But when he arrived in North Carolina, his excitement turned into frustration.

The Greyhound made three stops during his commute to Wilmington from Detroit. He said the bus workers were very accommodating when he would get off the bus to use the restroom.

When the bus made a final stop in Raleigh, Ulmer’s wheelchair was gone.

United States Forces Korea: Soldiers assemble wheelchairs for children

To help the Iraqi government build civil capacity and essential services, U.S. Soldiers here recently assembled wheelchairs for the local children’s hospital in Al Kut. The 1st Battalion, 10th Field Artillery Regiment troops were happy to assemble the urban-style wheelchairs, specifically designed for use on rough terrain.

The Guardian: Disabled people in Katine targeted in HIV/Aids awareness campaign

National Union of Disabled Persons in Uganda [NUDIPU] distributes information on HIV/Aids prevention to end ‘myth’ that people with disabilities are not sexually active and are free from infection. […]

According to Suleiman Kafero, the NUDIPU’s programme assistant on disability and HIV/Aids, most materials being distributed by other development organisations did not cater for disabled people, despite this group being particularly vulnerable to sexual exploitation and infection. […]

PWDs also experience stigma and marginalisation when it comes to accessing medical services and education about the virus.


CVT at Racialicious: A Broken System Part I: Unconstitutional

What aspect of U.S. life wraps all the forms of oppression and inequality into one tidy little package? What system successfully keeps women, people of color, LGBT, religious minorities, people with disabilities, and people in poverty “in their place” more effectively than any other? Why, the education system, of course.

2009 in review from Disability News Information Service in India: “The year that was…”

It has been fourteen long years since the Disability Act was passed and we are still fighting for our basic rights. The outgoing year may be another statistic, another number but yes, it did have its fair share of hopes and heartbreaks and elations. The struggle of an average disabled citizen of the country still revolves around access, education, employment and health. Two years since India ratified U.N.C.R.P.D. and the XIth Five Year Plan was unveiled, we still have a long, long way to go. Access is still dismal, education is still not inclusive, employment is as good as nought and the less said about health the better.

D.N.I.S. spoke to a few disabled rights activists, about the hits and misses of 2009 and how they would rate 2009 on a scale of 1 to 10.

The overall average rating was 4.9. Though not so cheerful, a few did have positive things to say about 2009

Deccan Herald: Proposed amendments to Disability Act upsets NGOs

Many allege that the Act passed by the Indian Parliament in 1995 does not align with the United Nations Convention for Rights of Persons With Disability (UNCRPD) that calls for a rights-based approach.

“Having signed and ratified the Convention, India has an obligation to orient its laws towards it,” Kanchan said. […]

“It was then that we brought to [MSJE Minister Mukul Wasnik’s] attention the flaws, substantial ones, that still existed in the so called ‘Amendments’ document being floated around by the Ministry,” said Abidi [Javed Abidi, Convenor of Disability Rights Group and Chairman of National Centre for Promotion of Employment for Disabled Persons (NCPEDP)].

“We then proposed that what India needs now, rather what the 70 million disabled people of India need now is a brand new, modern, forward looking, 21st century law. We even proposed a name. The Rights of Persons with Disabilities (Respect for Dignity, Effective Participation and Inclusive Opportunities) Act.”

QuickPress: Book List

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

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

Now it’s a Work In Progress Book List!

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

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.

Signal Boost: Sexuality & Access Project Survey

Sexuality and Access Project Survey

The Sexuality and Access Project is looking for people who use attendant services as well as attendants to participate in an anonymous survey.

The survey is part of this two-year project, funded by the Ontario Trillium Foundation. The goal of the project is to give Ontarians with disabilities greater control over their lives by providing them and their personal service attendants with the skills and knowledge to protect and develop their sexual health and safety.

There are two surveys. One is for persons with disabilities who use attendant services. The other is for attendants.

If you are in either of these categories, or you know someone who is, please complete the survey or pass the information along.

To take a survey online, please follow one of the links below. Each link will take you directly to the survey named:
Sexuality and Access Survey for persons with disabilities
Sexuality and Access Survey for attendants
DEADLINE: January 31, 2010

If you need assistance in filling out a survey, or prefer to participate in a phone survey, please contact Fran Odette.

To learn more about the project or to receive a version of the online survey in alternate format, contact:

Fran Odette, Project Coordinator
416-968-3422 Ext. 30
f.odette@gmail.com

This project is done in partnership with the Centre for Independent Living in Toronto, Niagara Centre for Independent Living, and Independent Centre and Network.

Recommended Reading for January 5th

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post.

staticnonsense at I Am Not: You

Telling me that I need to look at the word usage differently, as a given culture or society’s accepted usage or slang, does not erase these experiences. They do not magically disappear. They will always be a part of the person and yes, such usage can trigger them and cause harm. It also does not magically show me your perspective or why I should understand it or change my perspective to match it.

What would be awesome as a magical ability is being able to show you:

* Why the use of such words is a problem for me.
* The experiences that I have gone through that result in this problem.
* The emotional and/or physical turmoil that result from such experiences.
* Why what you’re assuming is bullshit.

abfh at Whose Planet is it Anyway? Autism Speaks Loses UK Affiliate

To briefly sum up the debacle, before releasing the I Am Autism video in September to widespread condemnation from disability rights groups, Autism Speaks had presented its text as a “poem” at a May meeting with British supporters in London, where it was received with about as much enthusiasm as a heap of decomposing Thames flotsam. After that, having apparently concluded that it didn’t matter what the Brits thought and that no propaganda was too extreme for the United States, Autism Speaks went ahead and created the video anyway. Not only did it suffer a major media embarrassment as a result, it also lost an international affiliate, as the UK nonprofit group that had been a branch of Autism Speaks has now formally cut its ties with its former parent organization and has renamed itself Autistica.

Although the newly renamed group seems to be just as interested in genetic research as the old one, it seems to have at least enough sense not to openly advocate eugenics.

cripchick: my five fav tools to dialogue about justice:

below are tools that i use in workshops that have proven to be really helpful. i use these because they shaped the way i view things. most of these deal with how to talk about ableism, access, the kind of activists we want to be, and the importance of making our movements relevant to people on the margins. i am posting this in the spirit of sharing— really hope you will send me stuff (zines, poems, activities, icebreakers, songs) you use either for yourself or others, too. here’s to a new year.

UPI: Mom of 9 sues for unwanted sterilization [More at the Boston Herald.]

Tessa Savicki, 35, whose children range in age from 3 to 21, said she provided an intra-uterine device to healthcare professionals to be installed after her last Caesarean-section, but they instead performed a tubal ligation, which Savicki said she had not authorized, the Boston Herald reported Sunday.

Savicki’s nine children were fathered by several men. She is unemployed and receives public aid for two of the four children who reside with her, receives supplemental security income because she has non-Hodgkin’s lymphoma, her mother has custody of three of the children, and two of her children are no longer minors, she said. […]

“I take care of my kids. I love my kids. I was not ready to make that kind of decision (for permanent sterilization),” she said.

Sandy Lahmann in the Summit Daily News: Disability 101: Does one voice make a difference?

However, in my experience, the biggest problem for people with disabilities is not a lack of ramps or elevators or whatever. The biggest problem is people’s attitudes. The attitudes of the able-bodied are the biggest barriers of all. Because they don’t get it. They don’t understand. […]

But the consequences can also be just daily, annoying things that happen every time a person with a disability goes out in public. Recently the annoying thing I am dealing with is that, because I use a wheelchair, everyone seems to want to touch me. I am continually patted on the shoulder.

BBC: Mobile breast screening unit has wheelchair access

A new mobile breast screening unit which will allow women wheelchair access is being launched. Breast Test Wales said the £140,000 unit, which has a large covered lift, will allow wheelchair users to enter the mobile unit safely. […]

Dr Rose Fox, deputy director of Screening Services Wales explained: “Until now, many of the women who were unable to climb the steps of our mobile units have had to travel long distances.

BBC: Secret film uncovers ‘disabled hate crime’ in Wales

Some disabled people in Wales are suffering abuse and threats for no other reason than their disability, an investigation by BBC Wales has found.

Secretly recorded footage for the documentary Why Do You Hate Me? shows a wheelchair user being mocked and threatened in a bar. In another incident a mother and daughter film an attacker smashing every window on their mobility car.[…]

The Director of Public Prosecutions, Kier Starmer QC, admitted that the justice system did not always get it right when dealing with so-called disability hate crime. He said: “I think there are lots and lots of incidents of disability hate crime. I think we haven’t collectively picked them up and investigated and prosecuted them in the way we should.”

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

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.]

Backscatter X-ray scanners, security theatre, and marginalised bodies

backscatter x-ray scan in which the body surface of a person is clearly visibleI’ve just been reading about backscatter X-rays and airport security in my local paper: UK brings in full body scanners. The UK is looking to push these into routine use, using the attempted attack at Christmas as an excuse. In this attack, the perpetrator had an incendiary device strapped to his leg, and managed to set his own pants on fire.

There has been controversy over the scanners since their existence hit the media several years ago. The full body scans show the body quite clearly – a bit like the images purported to be revealed by those “X-ray Glasses!!” advertised in old comic books.

Concern has largely centred around how the scanners might affect able-bodied cis people: that they will feel exposed, that the security people might be hur-hurring over their fat rolls or breasts, that the images might be saved. Security “experts” have scrambled to refute the claims, saying that only “same-sex” people will read the scans (as if this is supposed to be reassuring to non binary gendered people), that the scan reader will be in a separate room from the scannee, that the images will not be able to be saved with the technology. They assure us that there will be “privacy algorithms” in place.

If anyone believes airline security operators for a second when it comes to future commitments to respect the privacy of airline travellers? I’ve a harbour bridge I’d like to sell you.

The same security experts have assured the media that the scans will be optional, provided as a purely voluntary alternative to a full body pat-down. I’m going to go out on a limb right now and guess that the images are not, for example, an option for wheelchair users who can’t stand up out of the chair. Reassurance of options and choices are not particularly useful for the large swathes of the population who can’t access them.

Things that will likely show up in a full body scanner:

Urinary catheters.

Incontinence pads.

Colostomy and ileostomy bags.

PEG feeding tubes.

Mastectomy prostheses.

Certain medication pumps and implanted ports, such as insulin pumps.

TENS machines.

Pacemakers.

The bodies, including genitalia, of transgender and intersex and genderqueer people.

All of these are the signs of bodies already marginalised. Some of these signs may be clear on current security screenings – some may not.

People with marginalised bodies already have major issues with air travel – with the uncertainty of the security process, with the practicalities of dealing with aids and needs while travelling, with the spoon-sapping of travel, with no option but unfamiliar foods that may affect the body unpredictably, with the difficulty of maintaining personal privacy in prolonged periods in close quarters with others, with unpredictable delays that affect health, with security threats when bodies don’t ‘match’ identification documents.

Soon there may be one more element in the mix: the sure knowledge that one’s personal business will be laid bare in front of security-theatre goons who will almost certainly be poorly trained in disability awareness and gender tolerance.

I give it 24 hours before clandestine mobile phone images of travellers with marginalised bodies show up on the Internet.

Is this worth it?

Happy World Braille Day!

Today is World Braille Day!

Were I a more organized person, I would now present you with a scrupulously researched history of Braille, deep insights into the so-called “War of the Dots”, and a wonderful interlude on the use of raised text in the Halifax School for the Blind.

Instead, a few things I’ve gathered from my readings:

There had been a raised-dot writing process before Braille invented his own, but it took up more space. Braille simplified it and quickly taught his friends and fellow classmates at the Paris school for the blind how to use it. Previous to that, blind people had been taught to read using embossed letters. Letters would be embossed by getting paper wet and then putting it down on carved (wooden? metal? I can’t remember) 3-d letters. This strikes me as incredibly cumbersome.

At first, Braille’s new method was embraced by the school. However, when the former headmaster retired, a new headmaster came in and was determined to get rid of everything that had been done by the former one. I wrote some notes about this:

“To dramatize and enforce the new system [of embossed writing for the blind], Dufau made a bonfire in the school’s rear courtyard and burned not only the embossed books created by Huay’s [First principal of the first school for the blind in Europe] original process but also every book printed or hand-transcribed in Louis’ [Braille] new code. This comprised the school’s entire library, the product of nearly 50 years’ work. To make sure no Braille would ever again be used at the school, he also burned and confiscated the slates, styli, and other Braille writing equipment.”

!!!!!

“Dafau’s students rebelled and Braille survived. The older students taught the younger students despite the punishment of slaps across the hands and going to bed without dinner.”

Reading Hands: The Halifax School for the Blind, pp 25-26.

I don’t know yet how braille made its way from France across to England and then across to North America (there was a competition! And the “New York Press” style of raised dots), and know even less about how or whether or went elsewhere. (Lucky for me, there are books! I will learn! It will be exciting!)

One thing I like about braille is that it was invented and refined by blind people. Despite attempts to wipe it out, blind students refused to give it up – much like Sign Language, in fact.

WebAim provides some insight into how Blind people use the web.

Happy World Braille Day! Please feel free to correct my history in comments, and also to leave links and book recommendations. I would like to recommend Woeful Afflictions, by Mary Klages, which is a fascinating look at Victorian attitudes towards disability.

Recommended Reading for January 4th

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post.

NTs are Weird: Need a Ride

Many politicians in larger urban areas (like Denver) probably pat themselves on the back thinking, “See how progressive we are? We’re doing the bare minimum required by federal law to create an accessible transportation system. So now nobody has the excuse that they can’t get transportation to work or wherever else.” Let’s look at that system’s rules in Denver, though (they aren’t worse or better than most other US cities), if you can’t ride the standard bus (because of cognitive/sensory issues, location of the stop, etc).

Salma Mahbub at Bangladeshi Systems Change Advocacy Network (B-SCAN): An Open Letter of a Person with Disablity, by Sabrina Chowdhury

However, in other countries, the infrastructure and policies mean that the person with disabilities can lead a somewhat normal life and not face many of the problems and discrimination we face in this country. For example, Serina Row, the Manager of the Singapore Muscular Dystrophy Association, is also inflicted with the same condition. However, with the aid of an electric wheelchair, she is able to move around, complete her tasks and go about life as if nothing is wrong. […]

I wanted to start over, but, again, social barriers stopped me. How can a disabled woman, unable to even walk, supposed 2 start a family? My own father could not come to terms with the fact that his disabled daughter would marry.

Visible Woman: My Thoughts and Prayers [compiler’s note: caregiver point of view; interesting to contrast with chronic illness/disability, I think]

And when people say “if there is anything at all I can do?” Yeah, most don’t mean anything really. Particularly not the tough hands on patient care. Certainly when I say it I don’t mean it. It’s hard enough when you are the primary caregiver and can’t avoid it.

Mussa Chiwaula: About Disability and Assistive Devices

I vividly recall how my life was transformed when my parents,after a long time of struggle, finally acquired a wheelchair for me having been carried on the back by my brothers to and from school during the early part of my primary education.It was such a huge relief for my brothers since I was growing and also becoming heavy. […]

The demise of the Malawi Against Physical Disability (MAP) is a classic case in point.MAP manufactures low cost wheelchairs and tricycles that are ideal for the local environment and are given to disabled people throughout the country.

The services of the organisation have now come to a halt because government is reluctant to fund the project and this has resulted in many disabled people facing serious mobility problems such as school drop outs and will even unable some to cast their votes in the forthcoming elections this year thus disfranchising them and pushing them further to the margins of the society.

Bangalore Deaf Information: Hearing-impaired force a hearing

Members of the National Association for the Deaf (NAD) held a demonstration outside the office of the Chief Commissioner for Persons with Disabilities (CCPD) to protest against the denial of allotment of civil services to the three hearing impaired candidates who cleared the all-India civil services examination.

Happy Birthday, Louis Braille! On the “Is Braille Dead?” debate: [has anyone noticed – yes, you probably have – that these debates tend to assume that all blind folks have typical hearing and auditory processing? Not to mention all the non-book applications where audio may be suboptimal, like ATMs.]

New York Times Magazine: Listening to Braille

Blind Access Journal: Listening to Braille [has a copy of the article if the NYT paywall is playing up]

Media Dis & Dat: As “reading” evolves, Braille is pushed aside for audio books

Engadget: Squibble portable Braille interface is clever, beautiful

photo of large pocket-sized electronic device with a braille display and a series of buttons. Captioned Enjoy reading your messages, not being read to!

Braille Blocks

children's style colourful wooden blocks with the letters of the alphabet printed on them in Braille and Roman