All posts by Anna

Either/Or – Both/And

activism, bodies, disability activism, social attitudes

One of the ways mainstream media talks about things is in binaries. People are either book readers or they read nothing at all, for example. Women are either sluts or they aren’t having any sex at all.

People are either caregivers or they have disabilities and thus are cared for.

Or so I keep hearing.

So, when we talk about needs relating to children with disabilities, somehow the idea that there may be parents with disabilities who are primary caretakers for these children is missed. When we talk about caring for elderly or disabled parents or extended family members, we don’t talk about how to do that if you are also disabled. Because people with disabilities are cared for, right? You can’t be both cared for and caring for someone, right? Right?

Right now, I’m getting a lot of literature sent my way about “caring for” a spouse with Cancer. That literature will often include the information given by Family Caregiver Network Society: “We understand the common feelings of isolation, helplessness, exhaustion, stress, anger and guilt faced by family caregivers.”

All of that is often true for caregivers. But for some of us, that stuff is unrelated to being a caregiver because it comes from our status as people with disabilities in the first place.

I think this feeds into the ideas of disabled people as passive receptors of whatever, who never act on their own, who can’t act on their own, and whose only stories are those of being a burden. These perceptions feed into how and what support is given to families affected by disabilities that have long-term caring needs, what accommodations are made for meetings with caregivers (I was invited to a meeting in a space that isn’t wheelchair accessible, for example), and basically how society views everything to do with being disabled. Suddenly, your whole life is perceived as a burden to others, with nothing to live for and nothing to look forward to.

I know there are readers of this blog who are disabled and care for others, either in their homes or workplaces. I want to talk about how we are both disabled and carers. [1. ETA: It is not my intention to imply that if you are not both/and in this case, you are somehow a burden or not worth talking about, or ruining it somehow for everyone else. I am just focusing this particular discussion on that bit of intersectionality.]

ACTION ITEM (United States): Ask your rep to co-sponsor the Technology Bill of Rights for the Blind

activism

If there’s an action item you’d like to draw our attention to, please email us with a tip.

I received the following via email today:

National Federation of the Blind Applauds Measure To Ensure Blind People Equal Access to Technology

Washington, DC (January 27, 2010): Representative Jan Schakowsky (D-IL) today introduced the Technology Bill of Rights for the Blind (H.R. 4533), which will mandate that all consumer electronics, home appliances, kiosks, and electronic office technology provide user interfaces that are accessible to the blind.

Dr. Marc Maurer, President of the National Federation of the Blind, said: “The National Federation of the Blind appreciates the wise and decisive action taken today by Representative Schakowsky. In recent years, advances in microchip and digital technology have led to the proliferation of everyday products–such as dishwashers or copy machines–that have visual displays and other user interfaces that are inaccessible to individuals who are blind or have low vision. Inaccessibility of these devices is a major barrier to a blind person’s independence and productivity. The Technology Bill of Rights will ensure that manufacturers make their products accessible to all consumers, and that blind people will not be left behind as technology continues to advance.”

“The importance of access to technology in today’s society cannot be overstated. In many cases, a person’s livelihood depends upon the ability to use technology,” said Representative Schakowsky. “This bill will allow people who are blind or have low vision to compete on a level playing field with their sighted peers and remain productive members of society.”

This Bill is currently before the Committee on Energy and Commerce. It has no co-sponsors yet.

If you are living in the US, please considering contacting your representative and asking hir to co-sponsor Bill H.R. 4533, the Technology Bill of Rights for the Blind.

Write your Representative

Website Addresses for Representatives

Please pass the word to your friends and networks!

Disability & Fiction: After the Dragon by Sarah Monette

media and pop culture

Sarah Monette wrote a short story for Dragon Magazine called After the Dragon.

After the dragon, she lay in the white on white hospital room and wanted to die.

The counselor came and talked about stages of grief and group therapy, her speech so rehearsed Megan could hear the grooves in the vinyl; Megan turned the ruined side of her face toward her and said, “Do you have a group for this?”

She felt the moment when the counselor dropped the ball, didn’t have a pre-processed answer, when just for a second she was a real person, and then she picked it up again and gave Megan an answer she didn’t even hear.

The doctors talked about reconstructive surgery and skin grafts, and Megan agreed with them because it was easier than listening. It didn’t matter; they could not restore the hand that had seared and twisted and melted in the dragon’s heat. They could not restore the breast rent and ruined by the dragon’s claws. They couldn’t stop the fevers that racked her, one opportunistic infection after another like the aftershocks of an earthquake. Her risk of thirteen different kinds of cancer had skyrocketed, and osteoporosis had already started in the affected arm and shoulder.

They could not erase the dragon from her body, and she hated them for it.

Confession: I think I met Sarah Monette at WisCon last year.

I think this is an interesting story about disability. Unlike so many others I’ve read, it assumes the main character, Megan, is a complete human being and doesn’t need to go through something in order to become complete. It centers Megan in the story, not the reactions of her friends and family, while at the same time making it clear that not everyone can cope with a sudden dramatic change in ability status. It doesn’t present this as a story where Megan learns a Very Special Lesson, or is a Very Special Lesson for others.

I’m in a household where disability has been a component since I started it, so I’m not as familiar with the Stages Of Grief that can come from a sudden and traumatic change in ability status. To me, it all reads true.

I admit, I was dreading reading this when I realised it was going to be about disability and recovering from trauma, but I’m glad that I did. I think it’s a good short story, and I like how disability just is in it.

After the Dragon.

A Letter for your Toolbox: How to ask for transcripts and subtitles

accessibility, media and pop culture

A while back, I talked about how to make your blog more accessible, and brought up the issues of transcription.

Transcription is damned hard work to do properly, which leaves a lot of people in bind. It’s time consuming, it can be difficult, it can cause pain, and this doesn’t even get into stuff like how some people with disabilities just can’t provide transcriptions, for whatever reasons.

So, what do we do with content like that, especially now that things like vlogs and videos are becoming more and more a part of the blogosphere?

I think this is something we need to spread around a lot more.

Often, people who create vlogs will have a script they are working with. I suspect that many of them could be talked into doing stuff like providing a transcript or even including subtitles for their videos. But the difficult thing is, how do we ask? How do we suggest that they do more?

As I’ve mentioned before, I’m a big fan of letters, and have written a few in my life. I know what the big challenging bit of letter-writing can be: where do you start?

So, here is something I’ve drafted up. I’ve sent it once so far, so I can’t tell you what the success rate is, but feel free to use it, adapt it to your purposes, and send it along to people who’s vlog content you would like to see have a transcription and/or subtitling.

Personalise it to your heart’s content, and ignore/add things as you see fit, and don’t fret about crediting me in any way.

It’s a tool in our toolbox to encourage wider web-accessibility. The more uses we get out of it, the better!

Dear [Person]

My name is [Anna], and I’m a big fan of your vlogs/videos [Here I listed two videos I really liked].

I would like to link them [on my blog, www.disabledfeminsts.com], but I have some difficulties.

I’m a proponent of increased web accessibility for people with a variety of disabilities. Part of this means including transcriptions of video content when I link things. This is so that people with a variety of needs, such as people who are Deaf or hard of hearing, have auditory processing disorders, or have other disabilities which make watching video content difficult, can still get the content of the video. It is also useful for people who are not native English speakers, and people who, for whatever reason, cannot have the speakers of their computers turned on. Providing transcriptions allows all sorts of people the opportunity to get the content from your videos who might otherwise not be able to.

I think your blogs/videos are great, but whenever I want to link them, I have to make a decision: Do I have the time/energy to transcribe this video so that everyone can get the content? If I don’t, do I link it anyway, and hope someone else will come along and provide a transcript for me? Or is it just easier over all to not link your videos?

Obviously, your videos are very popular, and you’re not hurting for viewers because I don’t link them on my site. But I do think you’re missing an opportunity to have even more people access your content.

I suspect that you script your videos in advance. Would it be possible for you to provide a transcript on your YouTube page, or in your blog, for new videos? As well, YouTube allows you to upload captioning on video content. They provide information on how to do that here: http://www.google.com/support/youtube/bin/answer.py?answer=100077

I know that creating video content is time-consuming, and I really respect the work you’ve done. Providing a transcript and subtitling would be a great way of allowing more people to access your content, which would be win-win for everyone.

Thank you for your time!

[Me!]

If you have success with a version of this letter, let me know!

Open Letter to the Mainstream News Media

media and pop culture, social attitudes, , ,

Dear Reporter,

Hi, how are you? I am fine.

Okay, that’s a lie. I am not fine.

There’s a certain type of “news” article that drives me up the wall. The “feel good” story about how the poor pathetic cripple, whose life was horrible and bad, has now been SAVED! by something miraculous, by which we mean “something that would be common place if we lived in a world that wasn’t full of disability fail and discrimination” and also “something done by non-disabled people so we can all talk about how Good and Kind they are to the pathetic disabled person”.

Here’s an example: Legally Blind Man Gets First Job

Debbie and Russell Ward spent a whole evening crying in silence when they were told their four-year-old son would never see again.

Fifteen years later, their tears were ones of joy when they saw the look on Bobby’s face as he was told he had landed his first job.

The shy but proud 19-year-old worked his first shift at the new Supa IGA yesterday morning, where he will work in the produce section.

The article [do read the whole thing] describes how Bobby has multiple certifications that would make him qualified for a variety of jobs, but everyone should be Very! Happy! because look! The poor blind boy has a job. Isn’t it so awesome of the “new Supa IGA which opened yesterday morning” get this free publicity – I mean, give this nice young man a job?

The whole article is structured in such a condescending way, too. I mean, all due respect to Bobby’s parents – I still get teary whenever it hits me again that Don may never get his voice back [1. Side effect of the OMG! Cancer surgery. They removed his thyroid, and hurt his vocal cords. They may come back, but every day it seems less likely.], so I totally get the grieving period and how it can be a total blow to find out your life has been drastically changed – the article focuses a lot of attention on their grief, how their life was affected, and what they thought about everything.

Notice, please, that there’s not a single quote from Bobby himself. Just the Nice Sighted People who work so hard for him.

Look, Reporters: I get it. You want to tell a story that makes everyone feel good, and really digging into why Bobby couldn’t get a job he had qualifications for because of his disability wouldn’t really make anyone feel good at all. Prejudice rarely does.

But these sorts of stories fuel people’s pity. “Oh, how sad it must be to be blind! A world of darkness, of dependency, of not being able to drive a car! WOE. I’m so glad I’m not one of THEM. And I don’t know how I’d cope if my child were one of them. Oh, Bobby’s parents are so brave! And that nice man who gave him a job! So Nice!”

You can do better than this, really. I’ve seen you do better than this.

Do better, okay?

Hugs & Kisses,

Anna

The Cult of Busy: Introductory Thoughts

social attitudes, , , , ,

The first time I noticed the correlation between “busy” and “important” was when a friend of mine boasted of her first “cardiac incident” at the age of 27. She was a very important person, after all. So important that she had to be on call 24 hours a day for her workplace, had to arrange everything around the schedule of her workplace, and rushed back to work after being released from the hospital, in case anything had happened that needed only her to fix. [1. This wasn’t actually true, just how she perceived things. When she was fired several months later and the place she worked at was better for it, she was the only one surprised.]

Since I judge my worth the same way, I don’t really blame her. The Cult of Busy tells us that worthwhile people have full daytimers, with every minute packed. Want to do lunch with friends? I’ll have to plan that week in advance. Coffee date? Only if I can fit it in between my full-time job and my hours of volunteering. And I simply can’t agree to anything else right now, have I told you how busy and overwhelmed I am with all my important things to do?

There are things I think are wrong with this pace of life for everyone (including me, but as I said, I totally buy into it), but it’s especially difficult when it comes to people with disabilities. When you value someone’s worth as a human being on how much they can squeeze into a day, what value do you place on someone who cannot do all of that? And what value do you place on people who attempt to do enough to keep up with everyone else, but fail?

We value certain things in Western Society, and one of those things is How Important You Are, and how we judge that importance is how busy you are – how in demand you are – how many people want to know what you have to say.

One of the ways this manifests is around Work (by which I mean paid labour outside of the home – the issues of unpaid labour within the home are a bit different, and we all know that unpaid homemaking is very undervalued, and people have some odd ideas about home offices and small business run out of them, and then we get into volunteering and– well, I mean paid labour outside the home for now). “What do you do?” means “What is your job?”, and if you can’t work full-time because of a disability, well. Well. That’s so sad. What do you do all day, after all? (How important can you be? What will I talk to you about if I can’t talk to you about your job? Gosh, you must be lazy. It must be nice to sit around all day!)

And then things get internalized. “I don’t have a job. I’m not contributing. I’m not important. I better make myself small and inoffensive in some way so that no one thinks I’m a burden. I don’t really have a lot of worth as a person because I’m not contributing.”

The Cult of Busy reinforces a lot of abliest ideas about who is important, and who is not, which means that the people with disabilities who can’t do It All (whatever It All is) are by default not important. They don’t count. They don’t need to be considered in how you build a business, say, because they’re never going to work for you and never going to spend money there because they aren’t important. They’re not worth including in your campaign about social justice issues because they don’t work so they don’t really contribute and even if they did, no one cares about what they have to say anyway because they aren’t important. If they were important, they’d be Busy. And Busy means something very specific: As many hours of the day filled with Stuff To Do as possible.

I want to write a lot about the Cult of Busy, in a variety of ways. How The Cult of Busy feeds into the idea that people who work less than 40 (or 60 or 80) hours a week are “getting away with something” and “not actually committed to their jobs”. How if you’re not working you “should” be volunteering, because otherwise you’re doing “nothing” with your day. How we disdain people who “just sit around all day”. How people like me end up confusing “busy” with “important and meaningful” to the point where we make ourselves ill doing too many things and being torn in too many directions.

Be busy. Be more. Be better.

[Be exhausted. Be unwell. Be harmed.]

Signal Boost: Leonard Cheshire Disability

Uncategorized

Leonard Cheshire Disability : Campaigns Newsletter : Calling allbudding artists, designers and photographers

Calling all budding artists, designers and photographers

Dear Campaigners,

To help launch our Action for Access campaign we are calling on all budding artists, designers and photographers! We want to find new images to help us illustrate the access issues facing disabled people.

The winning entry will win £50 of Amazon vouchers and the design will feature on the Action for Access campaign toolkits. Click here to find out how to enter.

We know from speaking to you that access is an issue that affects everyone. Each day disabled people face barriers to doing everyday activities, like getting to work, shopping, meeting up with friends and family, going out to the cinema or the pub. Action for Access will help to change this through your actions. For more information on how to get involved and start filling out surveys visit [this website].

We would also like to say a massive thank you for all your support in 2009. Your responses to our New Year, New Campaigns survey were essential in ensuring that we are campaigning on the issues that matter to you. Look out for further news on how we will be incorporating your ideas into our future campaigns.

Best wishes, Amy

Campaigns Supporter Engagement Officer

p.s. The Action for Access website will be developing over the next few months so please let us know how you find the site and if there is any other information you would like to see added.

Contact the Policy & Campaigns Team on 020 3242 0373 or email campaigning@LCDisability.org <mailto:campaigning@LCDisability.org>

Signal Boost: Feminism and Mental Health (Call for Submissions)

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Feminism and Mental Health (Call for Submissions)

Call for Submissions:

The lived experience(s) of mental health in feminist communities

Call for submissions from people of any gender who identify with feminism and have lived experiences of a psychiatric diagnosis.

Our upcoming anthology, Feminist’s Navigate Mental Health (working title), will explore the complexities of navigating mental health and how a feminist identity may (or may not) shape those experiences, thoughts and feelings. Submissions are welcomed in the form of personal short stories.

The submissions received will shape the outcome of the book. The final manuscript will be submitted to relevant independent publishers.

Possible themes may include (but are not limited to):
o Coping – what works and what doesn’t
o Any positive aspects of your mental health that are commonly considered deficits
o Treatment preferences and past experiences
o Medication
o Personal/lived understandings of your diagnosis (acceptance or rejection)
o Stigma/tension around mental health issues in the feminist community
o Feminism and well-being/strength/empowerment
o Feminism and distress

Guidelines:
o Remember to take care of yourself while writing about topics that may be distressing;
o Good writing skills are great, but not mandatory! We will work with you to edit your piece;
o Submissions should be saved in .doc or .rtf, size 12 font, Arial or Times New Roman, and double spaced;
o 500 to 4000 words
o Include contact information and a brief biography;
o Only email submissions will be accepted;
o Submission deadline is June 1st, 2010.

Who we are
The women behind this project are Jenna MacKay and Alicia Merchant. Jenna is a psychiatric survivor and community activist who is particularly interested in violence and mental health. Alicia is a freelance writer and contributing editor for various magazines and has been published in CR Magazine, thirdspace and the Globe & Mail. Both self-identify as feminist, are interested in critical perspectives of health and live in Toronto. This project is not
affiliated with any institution or organization.

Comments, concerns, questions and submissions should be directed to:

fnmhsubmissions@gmail.com

Feminist Icons

anna history rants, anna rants, biography, disability activism, feminism, history, , ,

One of the fastest ways to make women with disabilities seem pathetic and worthless is to erase or ignore their lives. Why should the Feminist movement celebrate women like Helen Keller, when everyone knows that Keller’s entire contribution was she learned how to talk – and that was entirely Anne Sullivan’s work, after all.

This is, of course, completely untrue [1. Well, not the bit about the water, but that it’s the sum total of Keller’s accomplishments], but there was a concentrated effort to ensure that Keller’s accomplishments were ignored. “Radical Marxist” isn’t as nice a story as “deaf-blind woman overcomes”.

If you learned about Helen Keller in school at all, you probably learned the same pablum-esque story I did: Keller was a horrible brat of a child who screamed and kicked and was bad. Then, Anne Sullivan, that angelic woman, came along and, through her virtuous patience, finally got Keller to learn. She stuck Keller’s hand under the well water, and spelled “water” into her hand. And suddenly, Keller learned that “water” meant this stuff pouring over her hand. And then many years later she graduated from Radcliff College, and this is why all the students in my class should try their hardest, because look at how much Helen Keller accomplished, The End. [1. I think I’ve just described the plot of The Miracle Worker – another reason why I’m irritated that the show’s being put on. Ooh, let’s perpetuate the idea that Keller’s life began and ended at that water pump!]

This idea of Keller is so pervasive that even books written about Keller in her lifetime – books that she wrote the introduction for – include the same story. To be vain and quote an essay I wrote last semester:

The only blind person who is given any voice or agency within the work [Ishbel Ross’ Journey Into Light: The Story of the Education of the Blind] is Helen Keller, who wrote the forward for the book, and is presented as “[rising] above her triple handicap to become one of the best-known characters in the modern world.” … [D]espite dedicating a whole chapter to Keller, Ross makes no mention of Keller’s politics or activism, instead describing Keller’s grace, “agelessness”, and book collection.

No mention of her membership in the Wobblies [1. Industrial Workers of the World. They’re still around.]. I guess that didn’t fit the narrative.

I learned about Helen Keller’s actual life story by reading the book Lies my Teacher Told Me. [1. Loewen, James W. Lies my Teacher Told Me: Everything your American History Textbook Got Wrong, New York: Touchstone, 1995.] It’s a book that’s a bit hard for me to evaluate properly because I went to school in Canada and it’s focused on American education and teaching. The section Keller appears in (cleverly titled “handicapped by history”) talks about hero-building and erasing things that add complications in our respected leaders. About Keller, Loewen writes:

Keller’s commitment to socialism stemmed from her experience as a disabled person and from her sympathy for others with handicaps. She began by working to simplify the alphabet for the blind, but soon came to realize that to deal solely with blindness was to treat symptom, not cause. Through research she learned that blindness was not distributed randomly throughout the population but was concentrated in the lower class. Men who were poor might be blinded in industrial accidents or by inadequate medical care; poor women who became prostitutes faced the additional danger of syphilitic blindness. Thus Keller learned how the social class system controls people’s opportunities in life, sometimes determining even whether they can see. Keller’s research was not just book-learning: “I have visited sweatshops, factories, crowded slums. If I could not see it, I could smell it.”

At the time Keller became a socialist, she was one of the most famous women on the planet. She soon became the most notorious. Her conversion to socialism caused a new storm of publicity – this time outraged. Newspapers that had extolled her courage and intelligence now emphasized her handicap. Columnists charged that she had no independent sensory input, and was in thrall to those who fed her information. Typical was the editor of the Brooklyn Eagle, who wrote that Keller’s “mistakes spring out of the manifest limitation of her development.”

Keller recalled having met the editor: “At that time the compliments he paid me were so generous that I blush to remember them. But now that I Have come out for socialism he reminds me and the public that I am blind and deaf and especially liable to error. I must have shrunk in intelligence during the years since I met him” She went on: “On, ridiculous Brooklyn Eagle! Socially blind and deaf, it defends an intolerable system, a system that is the cause of much of the physical blindness and deafness which we are trying to prevent.” [1. LMTTM, 22-23]

Among other things, Keller helped found the American Civil Liberties Union, donated money to the NAACP, supported birth control, was part of the women’s suffrage movement, and spent time in Halifax. [1. What? I like my city! She spoke at the closing ceremonies of the Nova Scotia School of the Deaf and Dumb. I’ve read her letters to the principal. I get kinda wibbly. Helen Keller was here!]

When we talk about Women’s History – and I understand Women’s History month is in March in the US[1. It’s October in Canada.], so that’s not too long from now – we are doing something wrong if we do not include the lives of women with disabilities. Helen Keller isn’t the only woman with disabilities who has been ignored, erased, or sanitized for public consumption – it happens over and over, to queer women, to women of colour, to women who are ‘marked’ as ‘not-mainstream’.

I think we can do better than this. I think we’re brave enough to not only confront that important women of our past participated in and encouraged others to participate in abuse, neglect, genocide of certain groups of women, but also brave enough to celebrate histories outside the mainstream.

Crossing My Fingers For The Future

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I’m a letter writer. (Not in the wonderful personal-letter sense, much to my personal sadness, but in the “trying to accomplish something through quietly angry letter-writing” sense.) I write a lot of letters about disability & accessibility issues, to people like doctors who think every appointment is Show & Tell Disability Hour, to allegedly accessible transportation providers, to people who insist that they can’t be accessible because they’ll lose their historic plaque (a lie)… You know, letters. Sometimes these letters are effective, but I don’t feel much shock to tell you that I rarely get responses to them.

One of the reasons I write letters, though, is to hold people accountable.

Earlier this school year for me, I was personally assured by the president of my university that they took issues of disability & accessibility very seriously on my campus. This is, of course, utter shite. The meet & greet for my discipline was down a flight of stairs and then up another set of stairs, and they told me that anyone in a wheelchair could be carried in. I’ve been told by the Accessibility Center that they can only deal with students with disabilities directly – I can’t go to them as a student and get help making an event accessible if I’m not registered with them as a student with a disability. And, of course, I get the same responses when I talk to people: incomprehension and stares.

Today, I got an email from the Graduate Studies Office at my university, directing me towards a website for a– Actually, I don’t know. Here’s part of the email:

This conference is a chance to join some of Atlantic Canada’s leaders and youth activists to shape the future of [our university] and your faculties. For more information or to register, visit brainsforchange.ca. Registration deadline is Friday, January 15th.

This initiative is being spearheaded by the [University] Student Union, with support from [the University]’s Deans, and senior administration – a truly unprecedented level of interdisciplinary collaboration.

(I don’t know if my university self-googles, hence the redactions there. You can tell where I attend if you click on the link.]

I can’t read the link. Don can’t read the link. I set my screen reader on it, and it can’t even find the content, let alone read the link.

Every one of the groups of people named in the above paragraphs have assured me at some point that my university takes accessibility issues seriously.

So, I am writing another email, because maybe this time it will make a difference. It has a few times in the past. Not often, sadly. But maybe this time it will make a difference?

I would love to learn more about this conference, in order to decide if it appropriate for me to attend. Unfortunately, the website linked is an accessibility nightmare. I can’t even read it. My screen reader can’t read it outloud for me.

University administration and the executive officers of our Student Union keep telling me that disability & accessibility are a priority on campus. I want to believe them, but it becomes difficult when a conference that’s allegedly about engaging students doesn’t even attempt to be accessible to all of them.

I know that whoever gets this email isn’t responsible for the website, and I do believe the university wants to do more and be better about these sorts of issues. Is there any way I can get the information on the website emailed to me so I can look at it? And could you tell me who created the website? I think they should consider consulting with the Accessibility Center about web design in the future.

I’ll keep people posted about it, but I do wonder: Do you write letters about this sort of stuff? The biggest thing I’m told all the damned time is that somehow no one has ever complained before. This, of course, comes with that winning implication, that I’m just a whiner who should shut up.

I don’t think that my letter writing is going to make everything awesome, but I do think it means people may pay more attention to the next complaint.