And that’s the heart of it. I don’t want anyone to think I’m lazy. I’m already working part time because I simply cannot cope with full time work any more, and I can’t stand the questions I get about it. I’m not open about my health conditions, and I have no acceptable answer when I’m asked what I do when I’m not at work. I’m not studying. I’m not bringing up children. What’s my excuse?
I have been doing so much soul-searching lately, and trying to come to terms with all the changes that have been going on. Trying to come to terms with the word disabled. I still can’t say it out loud, you know, that I have disabilities. A workmate once laughed when I mentioned something about disability discrimination, because I’m not in a wheelchair or anything. Of course I’m not disabled.
When I call you to complain that the road repairs on State Road 50 have made the State Road 50 and S Park intersection unsafe for wheelchair users, pedestrians and bicyclists, and has already resulted in injuries, the proper response is not, “I guess you’ll just have to drive for awhile.”
Julie Cleary, 53, was hoping to use a new £2.8 million lift at Staplehurst train station in Kent so she could get out of the station after a day trip to London but was told she could not use it because of “health and safety”.
Miss Cleary was told instead to catch a train to Ashford International Station, 15 miles away, and back so she would end up on the right platform which was just 20 yards away.
KELLY Vincent is set to win an Upper House seat, but at this stage she physically cannot get there.
While the final results could still be weeks away, the Dignity 4 Disability candidate is the likely winner.
At 21, she will become the youngest female elected to Parliament.
She is also believed to be the first person in a wheelchair, but Parliament House is not yet disability-friendly enough for her to make her way to the chamber.
A group of artists and hackers have crafted a gadget that lets a paralyzed graffiti artist continue making art using only his eyes. And it costs about as much as an iPod shuffle.
Zach Lieberman of the Graffiti Research Lab started working on the EyeWriter with one man in mind: Los Angeles-based graffiti artist Tony Quan. In 2003, Quan was diagnosed with Lou Gehrig’s disease, leaving virtually every muscle in his body paralyzed except for his eyes. Lieberman and developers from Free Art and Technology, OpenFrameworks and the Ebeling Group were inspired to create low-cost, open-source hardware and software for eye-tracking to help Quan draw again.
World, please stop saying, “Achieving [something you think is awesome but it’s actually pathetic] is like winning a gold medal at the Special Olympics!”
A Special Olympics gold medal is not a dummy prize. It is awarded to world-class* athletes who have managed to beat dozens of other world-class athletes to achieve a distinction to which very few people can aspire. Special Olympics gold medallists think their medals are awesome because they actually are awesome.
Happy birthday to Australian senator from Queensland, Sue Boyce, who has made disability rights issues a priority of her legislative work. She’s currently serving on the committee to consider Australian immigration laws on the subject of disability.
Sometimes, it is hard to differentiate between direct and indirect consequences of a condition, between impairments and disabilities. IP uses autism as an example of a condition that doesn’t create intrinsic suffering, and I commented that I disagreed there, although this issue is hotly debated within the autistic community. I, for one, suffer from chronic overload, which does not always have a known trigger. It could be that, in an ideal world with low stimulation, I would not suffer from this symptom, but I often cannot tell exactly why I suffer from overload.
Becoming committed to surviving cancer was not an easy feat. Dealing with other people’s reaction to my cancer was one of the things that made it an especially difficult process. When the people around you are treating you like you’re already on death’s door, it can be hard to see past the fatalism. If I had a dime for every person that said “I’m so sorry” or “Poor baby!” when they found out I had cancer, I’d be richer than Bill Gates.
People often have two responses when I talk about my disease and the pain, one is to ignore, like I never talked. The idea that it hey it is just Elizabeth, ‘EFM’ after all, and her condition is weird and painful (and thus somehow pain is okay..for ME). This is set up socially in terminal disease culture where immediately the HEALTHY person is given counseling, has a stack of books of dealing with THEIR pain. There aren’t really any books on dealing with pain of terminal levels, or the path one has to take in order to live while dying. The attitude is, ‘They will be dead so….’ – what is unspoken is, ‘so YOUR pain, you healthy people, at their loss needs to be addressed as does the horror of those late nights of groans and agony we will never know’. For those who HAVE the groans and agony, the idea that only the person NOT in pain is having ‘issues’ is a rather hurtful one emotionally.
I’m on a variety of mailing lists dedicated to people with disabilities across Canada, and students are looking for university information. This can vary from what services are offered through Student Accessibility Services, how accessible a campus is, and what residence options they have available.
I only learned two days ago, by chance, that my university offers on-campus accommodations for (some) students with mobility-related disabilities. This information is not available on their website.
So, I drafted an email about it, and I thought it may be useful for others to adapt to their needs.
Dear [Residence Coordinator]
I was very surprised to hear that there are options for students with physical disabilities to live on campus at [Uni]. It was indicated to me that many of the residences at [Uni] have a room set aside on every floor that is larger than most, to accommodate mobility aids, and a private washroom with grip bars. I was very happy to learn of this, although it is not something I would now be able to take advantage of.
I’m writing because I think that this information, along with other information that would be relevant to students with disabilities coming to [Uni], should be available on the Residence website. A search through the Residence site does not bring up any references to students with disabilities or disability-related accommodations.
As well, [Person I spoke to] was unable to tell me about other accommodations that might be necessary for students with disabilities. For example, what policies are in place for students who work with service animals? Is there a way to adapt “general” rooms so that students who are Deaf can get visual alerts for alarms rather than relying on someone else to fetch them in case of an emergency? I understand from the website that [Uni] can accommodate vegan & vegetarian meal plans. I suspect that [Uni] can also accommodate food allergies or intolerances, but I feel this should be highlighted as part of the meal plan in a similar way to vegan* options.
As a student who is affected by disability, I am required to do a lot of advocating for myself and other people with disabilities. Frankly, one gets tired of having to navigate through levels of website to find out information, and I know I’m not the only student who has chosen to assume that, if information for students with disabilities isn’t available easily, then there probably isn’t any. I think making a section of the Residence website discussing explicitly what residences can accommodate students with disabilities, what is required to take advantage of these residences, what services [Uni] is able to provide to assist students with disabilities who wish to live in Residence, and a specific contact for students with disabilities to discuss any additional accommodations required would be very helpful. As well, contacting the Student Accessibility Services department and having them put a link to this information on their website would make it even easier for students with disabilities to know that [Uni] residence halls are happy to accept them.
Sincerely,
[Me!]
Feel free to use & adapt this letter for your needs.
My Student Union is doing work right now around issues of student residences. This is something that’s very much on my mind right now in light of the recent highlighting of difficulties of having a service animal when living on campus. In reading the Yummy Puppy Adventures – or, more accurately, the Mount Holyoke College Accessibility Fail – I started to really think about what an accessible residence experience would look like for students with disabilities.
So of course I brought it up to one of my student union executives, and instead of, say, asking students with disabilities for feedback on the issue, or contacting student accessibility services, he suggested I send him an email detailing out my concerns.
(In his defense, it is a month until school is over, and he is busy, and he doesn’t even know what to ask. I’m not irritated with him, just with the situation in general.)
So, this is the short list of things that I’ve come up with, but I know from previous discussions with the community that I will miss important things that should be considered.
In no order:
Clearly post that service animals are allowed around campus and in campus dorms and facilities.
List on both your residence page and your student accessibility services page that there are residences for students with disabilities.
Private washrooms with grip bars for toilet & shower/bath.
Wider doors & hallways.
Barrier free access to all dorm rooms.
Residence Orientation that mentions accessibility features to all students, including re-iterating scent free policies and that service animals are allowed on campus.
The ability to change any room over to have lights that flash for alerts.
A map of campus that indicates all barrier-free access points to all buildings.
Highlighting menu plans that accommodate food allergies or intolerances.
It’s been an interesting week or so in Canada regarding issues around disability. “Interesting” here means hit and miss.
I could, for example, direct you to the coverage of the Paralymic Games, but that site appears to be inaccessible to screen readers. It’s very busy, and has a lot of flash on it. There’s an audio slide show – the first I’ve ever come across – but you need to download something in order to run the audio.
For disability rights activist Catherine Frazee, the personal overlaps with the political even when she doesn’t intend it.
That happened with Frazee’s recent journey to Vancouver from Toronto for Out From Under, a unique exhibition on the social history of disability in Canada.
As one of its three curators, she felt it was important to be here for the exhibition’s opening during the Paralympic Winter Games.
Frazee, the director of Ryerson’s Institute for Disability Studies, can’t fly for medical reasons having to do with living with spinal muscular atrophy, a genetic neuromuscular disease characterized by the degeneration of the motor neurons. When she travels, she is accompanied by an attendant and Patricia Seeley, her life partner.
The only option for her was to take the train.
Frazee was willing to make sacrifices to travel out west, such as sleeping in her electric wheelchair. She can’t be separated from her wheelchair, which is uniquely customized to her body’s needs. At times, for example, she has to tilt it slightly back to help with her breathing.
When she contacted Via Rail, she was told that she and her wheelchair had to travel separately.
Of course she was. *headdesk*
The exhibit itself sounds amazing and I wish I could see it. But it’s telling to me that in my country, where politicians regularly tell me they really care about the needs of people with disabilities, it’s impossible for Catherine Frazee to travel to Vancouver. Ultimately, she and her partner traveled through the US, where the Americans with Disabilities Act, as poor as it may be, still required that there be train cars that Frazee be able to use.
Promoting the rights of disabled people around the world will become a key foreign policy focus for Canada, Foreign Affairs Minister Lawrence Cannon said at the United Nations Thursday.
Cannon made the declaration after delivering Canada’s ratification of the world body’s Convention on the Rights of Persons with Disabilities.
Yesterday morning Prime Minister Stephen Harper performed a first, by being the first Canadian Prime Minister to have his remarks streamed live through YouTube. Before and after the PM’s speech, and up until Sunday at 1:00pm ET, Canadians can login to the Talk Canada YouTUbe page to submit and vote on questions, which the PM will answer in another live stream on Tuesday.
As a completely blind Canadian and an Information and Communications Technology Accessibility Consultant (I help make information systems work for persons with disabilities), I take exception to the PM using technologies such as YouTube and Google Moderator (used for the questions and voting). These technologies were poorly accessible to me, and to other blind and partially sighted Canadians, including Derek Wilson who wrote about the barriers he faced. This is not the way that things need to be, it would have been very possible, should the PM have cared, to make the Talk Canada event easily accessible to a much wider range of Canadians, including the blind and visually impaired.
[I also have no idea if the actual videos will be subtitled, Signed, or a transcript provided.]
I’m frustrated. Politicians, business owners, school officials, everyone tells me that they really care about the needs of people with disabilities. They often do grand gestures: Ooh, we’ll show highlights from the Paralympic Games! We’ll agree that yes, we’re going to support the needs and rights of people with disabilities in other countries! We’re going to put in a Student Accessibility Services Office (because all people with disabilities on campus are students) and that will solve all the problems!
What we won’t do, apparently, is ensure that people with disabilities in Canada can get from Nova Scotia to Vancouver with minimal fuss and drama, like the currently non-disabled can. We won’t discuss how inaccessible politicians are to people with disabilities. We will express disdain that the laws in Ontario now require universities to be accessible to students before students spend months or even years self-advocating. We will approve bursaries for students purchasing equipment that helps them write their essays and do their school work in February – 6 months into the Academic year.
Check out http://www.nawwd.co.za for an e-Library developed to support Women with Disabilitiies in Africa
In September 2009 the Secretariat of the African Decade of Persons with Disabilities (SADPD) commissioned Disability Action Research Team (DART) and CBR Education & Training for Empowerment (CREATE) to strengthen the Network of African Women with Disabilities (NAWWD). The brief included development of this e-library.
Electronic resources were collated during a systematic review of information relating to women with disabilities in Africa. The website domain contains a collection of articles, research reports, factsheets, documents and training packs produced between 1994-2009. Searches were conducted on the websites of key international Non-Government Organisations (INGOs) and Disabled People’s Organisations (DPOs,) as well as several other international bodies such as the African Union (AU). The searches took place over a period of 3 weeks and were restricted to documents which are available at no cost; all of these are in English, but where Portuguese or French versions were available, these are included. Electronic copies of all the articles cited here are available in different formats (MS Word and PDF). In addition, there is a list of websites and organizations which may be useful resources to women with disabilities on the continent.
I encourage you today to check out Gender Across Border’s Blog(swarm) for International Women’s Day. Throughout the day, the GAB editorial board (including Emily Heroy, Colleen Hodgetts, Jessica Mack, Carrie Polansky, Erin Rickard, Elizabeth Switaj and Tatiana McKinney) will be updating GAB to highlight particular posts. It’s never too late to participate!
There were two themes, and I, of course, took this one:
Describe a particular organization, person, or moment in history that helped to mobilize a meaningful change in equal rights for all.
I think it’s fairly clear that I admire Helen Keller, and resent the way what she did with her life has been reduced to parody, the subject of infantile jokes about people who are Deaf-Blind, and forgotten about. When people bother to tell bits of her story, about her learning words at a well after weeks of patient tutoring from Anne Sullivan, it becomes a form of Inspiration that’s based entirely on pity. Oh, how tragic her life could have been, shrouded in darkness and silence. And then she learned to speak! And all was well!
I’m going to interrupt this post to point you towards a previous one I wrote about Keller: Feminist Icons
[This part is actually quoted from the book Lies my Teacher Told Me.]
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.”
I think Helen Keller changed the world, or at least did an awful lot of work towards changing it. But, even with focusing on her achievements, on her work, it’s important to put her in context.
Helen Keller was a white middle-class woman from the US. She was young and pretty and very talented. Before she became famous as The Deaf-Blind Girl (because, of course, there can only be one Deaf-Blind Girl, and she is always white), Laura Bridgman was The Deaf-Blind Girl. And Bridgman was not as pretty, not as nice, and not as accomplished as Keller.
I mention Laura Bridgman because, if the whole purpose of the Helen Keller Narrative was Nice Deaf-Blind Girl Does Good (and thus you, gentle reader, should put your life in proper perspective!), then Bridgman fits almost the same bill. She learned to read and write, wrote letters to her fans, was on public display with ribbons to hide her eyes, and was just as famous as Keller. So why is our dominant narrative Keller and not Bridgman?
Well, what better way to discount someone’s radical roots than to turn them into an Inspiring Story, and nothing more?
So, for International Women’s Day, I want to remind readers that there are certain stories that we tell about certain women, and that these stories have a purpose.
One of the things that drove me up the wall about a certain popular television show that I’m not going to talk about was the scene with the “Deaf Choir”. I put “Deaf Choir” in scare quotes here because, while the members of the choir showed in that show were Deaf, that didn’t look much like any of the Deaf singing that I’ve seen.
But hey – don’t take my word for it.
Auslan is the language of the deaf community in Australia. Here’s a video of a deaf woman signing “Madly Truly Deeply” by Savage Garden (lyrics below video).
Lyrics:
I’ll be your dream / I’ll be your wish / I’ll be your fantasy.
I’ll be your hope / I’ll be your love / Be everything that you need.
I love you more with every breath / Truly madly deeply do
I will be strong I will be faithful /’Cos I’m counting on a new beginning.
A reason for living.
A deeper meaning.
I want to stand with you on a mountain. / I want to bathe with you in the sea. / I want to lay like this forever. / Until the sky falls down on me
And when the stars are shining brightly / In the velvet sky,
I’ll make a wish / Send it to heaven / Then make you want to cry..
The tears of joy / For all the pleasure and the certainty.
That we’re surrounded / By the comfort and protection of
The highest power.
In lonely hours.
The tears devour you.
I want to stand with you on a mountain, I want to bathe with you in the sea. I want to lay like this forever, Until the sky falls down on me
Oh can’t you see it baby? You don’t have to close your eyes
‘Cos it’s standing right before you. All that you need will surely come.
I’ll be your dream / I’ll be your wish / I’ll be your fantasy.
I’ll be your hope / I’ll be your love / Be everything that you need.
I’ll love you more with every breath / Truly madly deeply do
American Sign Language is used throughout the US & Canada (although Canada also has Quebec Sign Language (LSQ: (langue des signes Quebecoise) & Maritime Sign Language).
This video features a variety of people Signing Michael & Janet Jackson’s Scream. The video is subtitled, and lyrics follow:
lyrics:
[Michael]
Tired of injustice / Tired of the schemes/ The lies are disgusting
directed at me.
Kicking me down/ I got to get up / As jacked as it sounds
The whole system sucks
[Janet]
Peek in the shadow / I Come into the light / You tell me I’m wrong
Then you better prove you’re right
You’re sellin’ out souls but / I care about mine/ I’ve got to get stronger
And I won’t give up the fight
[Michael]
With such confusions don’t it make you wanna scream
You’re bash abusin’ victimize within the scheme
(Janet)
You try to cope with every lie they scrutinize
[Both]
Somebody please have mercy / ‘Cause I just can’t take it
Stop pressurin’ me / Just stop pressurin’ me/ Stop pressurin’ me
Make me wanna scream
Stop pressurin’ me / Just stop pressurin’ me/ Stop pressurin’ me
Make me wanna scream
[Michael]
Tired of you tellin’ the story your way / It’s causin’ confusion / You think it’s okay
[Janet]
You Keep changin’ the rules / While I keep playin’ the game / I can’t take it much longer / I think I might go insane
[Michael]
With such confusions, don’t it make you wanna scream / Your bash abusin’ victimize within’ the scheme
(Janet)
You find your pleasure scandalizin’ every lie
[Both]
Oh father, please have mercy ’cause I just can’t take it
Stop pressurin’ me / Just stop pressurin’ me / Stop pressurin’ me
Make me wanna scream
Stop pressurin’ me / Just stop pressurin’ me
Stop fuckin’ with me / Make me wanna scream
[Janet]
“Oh my God, can’t believe what I saw / As I turned on the TV, the city
I was disgusted by all the injustice / All the injustice”
[Michael]
“All the injustice”
[News Man]
“A man has been brutally beaten to death by Police after being wrongly identified as a robbery suspect. The man was an 18 year old black male…”
[Michael]
With such collusions don’t it make you wanna scream / Your bash abusin’ victimize within the scheme
[Janet]
You try to cope with every lie they scrutinize
[Both]
Oh brother please have mercy ‘Cause I just can’t take it / Stop pressurin’ me
Just stop pressurin’ me / Stop pressurin’ me/ Make me wanna scream
Stop pressurin’ me / Just stop pressurin’ me / Stop pressurin’ me
Make me wanna scream / Stop pressurin’ me
Just stop pressurin’ me / Stop pressurin’ me / Make me wanna scream
Stop pressurin’ me / Just stop pressurin’ me / Stop pressurin’ me
Make me wanna scream / Stop your pressure!
British Sign Language is used throughout the UK. I first learned about it by watching Paddy Ladd’s vids.
This guy is Signing Lady GaGa’s Poker Face (subtitles, lyrics follow):
Lyrics:
Mum mum mum mah / Mum mum mum mah
I wanna hold em’ like they do in Texas please / Fold em’ let em’ hit me raise it baby stay with me (I love it)/ LoveGame intuition play the cards with Spades to start/ And after he’s been hooked I’ll play the one that’s on his heart
Oh, oh, oh, oh, ohhhh, oh-oh-e-oh-oh-oh / I’ll get him hot, show him what I’ve got
Oh, oh, oh, oh, ohhhh, oh-oh-e-oh-oh-oh, / I’ll get him hot, show him what I’ve got
Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
P-p-p-poker face, p-p-poker face / (Mum mum mum mah)
P-p-p-poker face, p-p-poker face / (Mum mum mum mah)
I wanna roll with him a hard pair we will be / A little gambling is fun when you’re with me (I love it)
Russian Roulette is not the same without a gun / And baby when it’s love if its not rough it isn’t fun, fun
Oh, oh, oh, oh, ohhhh, oh-oh-e-oh-oh-oh / I’ll get him hot, show him what I’ve got / Oh, oh, oh, oh, ohhhh, oh-oh-e-oh-oh-oh,
I’ll get him hot, show him what I’ve got
Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
Can’t read my / Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
P-p-p-poker face, p-p-poker face (Mum mum mum mah)
P-p-p-poker face, p-p-poker face (Mum mum mum mah)
I won’t tell you that I love you / Kiss or hug you / Cause I’m bluffin’ with my muffin / I’m not lying I’m just stunnin’ with my love-glue-gunning / Just like a chick in the casino / Take your bank before I pay you out / I promise this, promise this / Check this hand cause I’m marvelous
Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
Can’t read my / Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
P-p-p-poker face, p-p-poker face / (Mum mum mum mah)
P-p-p-poker face, p-p-poker face / (Mum mum mum mah)
P-p-p-poker face, p-p-poker face / (Mum mum mum mah)
P-p-p-poker face, p-p-poker face / (Mum mum mum mah)
P-p-p-poker face, p-p-poker face / (Mum mum mum mah)
P-p-p-poker face, p-p-poker face / (Mum mum mum mah)
