Monthly Archives: November 2010

Happy Post! Things That Make My Life … Er … Easier?

30 November, 2010happy posts, Uncategorizedthings that make my life easierOuyang Dan

I have a love of cooking that often times taps me all the way to the bottom of my silverware drawer. I will often borrow tomorrow’s spoons to finish what I want to do today… I am sure that some of this is drawn of my stubborn and bullheaded nature.

To assist me in my passions, The Guy outfitted our tiny Korean-style kitchen with a thick, squishy mat from the local E-Mart (like a Korean department store that has groceries and household goods). It takes a ton of the strain off of my back and upper legs while I am standing for extended periods while chopping or kneading. I love it. It makes my life easier!

Apparently, I am not the only one in our home who loves it.

[A wee little white paw sticks out from a wood-looking squishy mat on my wood floor. Who could it be?]

Whoever it is seems to think that these tan toes look enticing! Or maybe she is defending the honor of my stolen Navy Issued sweat pants. I was looking for those!

Someone was playing “submarine kitteh” under the floor mat and was stalking our feet as we walked past. Of course, it rendered the mat useless, because who can walk on a mat that is being used by a kitty?

I guess it isn’t really making my life easier, but I guess that is why she came in a cute package, so that I don’t mind so much!

Hope this brightened your day just a little bit!

WIN!: Federal Court Orders Canadian Government To Make Websites Accessible To Screen Readers!

30 November, 2010Uncategorizedaccessibility, anna throws a party and everyone's invited, canada, donna jodham, web contentAnna

I haven’t even had time to process this yet – I just found out when my friend called me to ask if I had heard the news. Donna Jodham has won her case against the Canadian Government – Government websites will now have 15 months to follow their own accessibility guidelines.

Canada must make Web accessible to blind

A federal court ruled Monday the government had denied Jodhan’s equality rights by not providing equal access to government programs online.

“She has been denied equal access to, and benefit from, government information and services provided online to the public on the Internet, and that this constitutes discrimination against her on the basis of her physical disability, namely that she is blind,” Justice Michael Kelen wrote in his ruling.

The government was not living up to its own 2001 accessibility standards, Kelen ruled, and he gave Ottawa 15 months to make its Web sites more accessible.

In a rare move, Kelen said the court would monitor the government’s implementation of online services for the visually impaired to ensure it complies by the deadline.

I am so excited to learn of this! Congratulations, Donna – your hard work is greatly appreciated!

QuickPress: Disability Blog Carnival 71 is up!

29 November, 2010signal boostblog carnival, disability blog carnival, have I mentioned I love Penny lately? Because I doAnna

As it is late and dinner is calling, I’m going to cheat and just C&P what Penny says over at Disability Studies. Penny: For All Your Disability Blog Carnival (And Disability History) Needs!

The November edition is up at Modus Dopens, and it’s a good solid collection of links, around the theme of intersections. Go, fix yourself a drink (suggests the host!), and have a read.

The December edition is due to post at Rolling Around in My Head, where Dave H has invited posts around the theme “long nights and what we need to get through them,” appropriate for the month with the literal longest nights (in the Northern Hemisphere), and a month with holidays that can feel like very long nights for many. Submissions are invited by December 15th for inclusion in the carnival.

Penny is also looking for hosts for the new year, so please do check her out.

I’ve only had a bit of an opportunity to look over the links, and again, this Disability Blog Carnival looks outstanding. I can’t tell readers enough: There is a rich and vibrant disability blogosphere, and I love it.

For Granted

28 November, 2010intersectionality, parenting, small storiesparents with disabilitiesOuyang Dan

It’s odd how we sometimes take the habits of our children for granted.

I have a particularly chatty child. I can’t imagine where she gets her penchant for being a non-concise story-teller. Really. I can’t.

But when it is early in the morning and I haven’t had a chance to heave my second cup of coffee into my not-yet-awake face that adorable chattering doesn’t seem so adorable. It grates on my every nerve.

I just want to enjoy my coffee and check up on SRS Blogger BZNS in the quiet of the not-yet-awake-world. Without the repetitive chatter.

Who decided that there should be no volume control? (I really love my kid!) (I do! She’s awesome!)

However, at some point during my working day, I must have decided that not eating lunch or drinking my normal three litres of water seemed like a good idea. Sometime between picking up Kid from school, picking up last minute Thanksgiving groceries, and reassuring my mother that Korea is still outside my window I started to “green out”. I don’t know if you have ever had that experience, but I don’t ever “black out”. I get dizzy, nauseous, and my field of vision tunnels and goes green. When I was Active Duty one of my buddies who was training to go to BUD/S once told me this is a sign of dehydration, but I think it may have been a combination of things.

I couldn’t drive. I couldn’t speak, except in one or two word fragments. I managed to get out “seat…back” and “water”. I managed to communicate to The Guy that I needed water. He laid my seat back and raced back into the store to get me water while I lie there, with my hands numb, feeling trapped in my body. I could barely move, and managed to eek out a few tears as I wondered what had brought this on.

Then Kid patted my head, and instead of panicking, simply asked if I was OK. I managed “talk”, and she did. She simply did. She held my hand, and talked to me natural as could be, telling me stories about her day at school, about the green bean casserole she was going to make. She held my hand and managed to keep me calm with all of that chit-chat that my decaffeinated self can’t put up with some mornings.

As an adult when someone tells me to talk to them to distract them from something I come up with nothing. It is difficult to come up with mundane chatter. Somehow it comes so easy to a child.

Suddenly, that chatter was keeping me there. It was light, and if I had been in the position to think of it, I would have been so proud of her for staying level-headed in the situation. So I am thinking of it right now.

Finally, my water showed up, and twenty minutes later the shaking subsided, my vision cleared, and I was able to pull myself together. Magical thing now and again, water is.

It can’t be easy growing up with a parent with disabilities, because I am certain that there are times in their lives that they have to grow up faster than they would otherwise, and that there might be times that they face disappointments because of certain limitations. I know that for the most part, they grow up like most other kids, but every now and then they have to hold the hand of their parent while they are going through things (like nearly passing out).

I love her and her chatter.

You Get Proud By Practicing: Laura Hershey, Writer, Poet, Activist, Consultant, has died

27 November, 2010deathslaura hersheyAnna

I’ve just learned via email and twitter that activist, poet, and amazing woman Laura Hershey has died. I have to admit that I’m deeply hoping that someone pops up says “No, no, you misunderstand, she’s not dead!” because I just cannot currently imagine a world without Laura Hershey in it.

For some, Laura is most famous for her bravery and strength in confronting the Jerry Lewis Telethon, organizing counter-protests and bluntly exposing the hypocrisy of honouring a man who expresses such disdain towards people with disabilities as a “humanitarian”. You can read her amazing article, From Poster Child to Protester at CripCommentary.

The telethon’s hegemony over the image of disability is quite staggering. A 1996 press release issued by MDA states, “According to A.C. Nielsen, last year’s Telethon was watched by some 70 million Americans or 27 million households. The MDA Telethon — considered the granddaddy of all Telethons — ranks in viewership with the World Series and the Academy Awards. ” Those 70 million people are absorbing a message shaped by greed, deception, and bigotry.

The bigotry of Jerry Lewis is worth discussing. I don’t necessarily enjoy attacking another person’s motives, but I hear defenders saying, “Jerry Lewis is trying to help so many people. How dare you criticize his methods?” This means-justifies-the-ends argument has a long and despicable history, which I don’t need to go into here. Even more dangerous is the attitude that people who are “being helped” have no right to say how they want to be helped, or treated, or thought of. This is paternalism at its worst. By being the object of charitable efforts, do we thereby waive our right to respect, and to free speech? If people are really interested in helping me, wouldn’t they want to hear me tell my own story, rather than hearing a distorted version of it from someone who not only doesn’t share my experience, but who doesn’t even seem to want to listen to me? With the stated goal of “helping” his “kids,” Jerry Lewis is helping to keep alive the most pernicious myths about people who have disabilities. He ignores our truth, substituting his own distorted assumptions.

If our protest did nothing else, it allowed some of us the opportunity to say, “No, this is not our reality. If you want to know what our lives are like, listen to us. If you want to know what we need, ask us. If you truly want to help us, let us tell you how. And if you pity and fear us, please own that; then let us work together at changing the world so that disability will not be something to fear, but something to try to understand.”

The response to our protest has been interesting. Many people seem to resent our daring to object to these distortions, half-truths, and stereotypes. I have been called “ungrateful,” “cruel,” and “insensitive” — simply for trying to counter all this with the truth, with my truth. At the very least, I feel that the protest has enabled me and others to begin getting on record our own stories, in contrast to the misleading accounts that come from the telethon.

Laura also made videos to emphasize the work that people with disabilities were doing on their own behalf to emphasize that they were not objects of pity.

Transcript:

The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars.

The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”.

Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue.

You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that.

We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.

Laura was also a poet, whose poetry not only described her experience as a proud cripple, but also as a lesbian, and as the mother of an adopted daughter. The most recent poem of her site is titled “Adopting a Fourteen-Year-Old in the 21st Century”.

I’m sorry, I want to say something profound, something that will make it clear what an influence Laura has had, on myself, on almost everyone I know in disability rights activism, on disability studies. She’s often cited in the things I read in academia, and often cited by the people I know in activist circles. I feel such a deep and personal loss, even though I didn’t know Laura through anything more – or less – than her writing.

My heart and thoughts go out to her family and loved ones.

Laura Hershey
Laura’s column for the Christopher & Dana Reed Foundation
Laura’s article at the Huffington Post: Independence and Interdependence: Equally Important Values

You Get Proud by Practicing, by Laura Hershey, an excerpt:

You can add your voice
All night to the voices
Of a hundred and fifty others
In a circle
Around a jailhouse
Where your brothers and sisters are being held
For blocking buses with no lifts,
Or you can be one of the ones
Inside the jailhouse,
Knowing of the circle outside.
You can speak your love
To a friend
Without fear.
You can find someone who will listen to you
Without judging you or doubting you or being
Afraid of you
And let you hear yourself perhaps
For the very first time.
These are all ways
Of getting proud.
None of them
Are easy, but all of them
Are possible. You can do all of these things,
Or just one of them again and again.
You get proud
By practicing.

Accessing Sexual Health Part One: Barriers To Getting There

26 November, 2010accessibility, bodieshealth care, health care is an accessibility issueAnna

I gave a bit of a talk recently on what I viewed as the barriers to sexual health and education for people with disabilities, discovering that I have a lot of thoughts about the barriers not only to sexual health but to all levels of health care when one is disabled. These can vary from the difficulties in making appointments to waiting rooms where people who use wheelchairs are told to wait in the hallway.

Sexual health is something that weighs quite heavily on my mind. As we’ve highlighted here (and many other bloggers have highlighted elsewhere), people with disabilities, especially women, are vulnerable to sexual abuse.

Over the next few posts (the other two will be available next week), I wanted to highlight some the barriers I perceive in people with disabilities in getting access to sexual health-related care, and I encourage people of any gender, should they wish, to detail out their own struggles or successes in receiving sexual health care. I would remind commenters, though, that people do search and read comments, and if they wish to give their stories anonymously, that’s perfectly acceptable.

The two things I want to highlight today are getting an appointment, and getting into an appointment.

Over the past couple of months it’s been brought intimately home to me how difficult it can be to get a doctor’s appointment for any reason if you can’t use the phone. I’ve been unable to hear very well due to an ongoing ear infection, and Don has a frozen vocal cord, meaning he cannot speak much above a whisper. Trying to book an appointment to get my ear checked has been an effort in frustration: neither my GP nor the ENT clinic I was referred to have any indication of a way to book an appointment that doesn’t involve using the phone.

When I worked in Health Care I did receive relay calls. For those not familiar, d/Deaf or Hard of Hearing people can use relay calls where they use a TTY phone. They contact the relay center via TTY, and the relay center calls the person you wish to speak to. My understanding is that you then type what you want to say, and the relay operator repeats it to the person who you are talking to. They then type up everything the other person says. (The speaking person says “go ahead” when they want the text-part sent.)

[Interestingly, I only learned how to take Relay Calls when I worked in a call center for a major wireless company in the US. No one when I worked in health care discussed Relay Calls or how to handle them, although in my experience the operators were very kind and forthcoming with that information.]

However, phone issues are not limited in any way to people who may be able to take advantage of Relay Calls. Relay Calls are not appropriate for Don’s needs as someone with a frozen vocal cord, for one example. There are also people with audio processing disorders, people who have phone anxiety issues that make using the phone difficult, if not impossible. There are people whose phone-related issues are temporary rather than permanent and thus they don’t have the equipment available to take advantage of something like Relay Calls. These sorts of barriers to accessing health services, especially sexual health services, can cause people to just give up on the whole enterprise.

One solution to this would be for sexual health clinics and doctors offices to consider making people aware of alternative means of contacting them for appointments, be this via email or fax or even an online appointment booking service. While I have no doubt that these are available currently, I have never seen these services advertised. Certainly when trying to book my ear appointments I would have loved to have done it via email, since I couldn’t hear, which made making the appointment difficult.

Another seemingly simple problem that can be a barrier not only to any health service, but any building at all, is the dreaded Wheelchair Lift.

I mean, let’s pretend that every building you’d want to go to for health services was specifically wheelchair accessible (Note: This is not as true as one might imagine.) In many cases, this will mean a wheelchair lift has been added to one of the stairwells.

As many people who use wheelchairs can tell you, wheelchair access is often “in the back”. This can mean that you need to call ahead to let them know that you’ll be there in five or ten minutes and could someone be troubled to let you in? These doors are not always cleared of snow. The one for one of the buildings that Don’s had to enter doesn’t have a full sidewalk going up to it, so he has to deal with mud when it rains. It rains a lot in Halifax.

However, wheelchair lifts, bless them, do not really help a lot of people with other mobility-related disabilities. You can’t use a wheelchair lift if you use a cane. You can’t use it if you use a walker. Occasionally people in these situations will be allowed to use a chair and sit on it while the lift takes them up the flight of stairs, but this is not always something people are willing to do.

Again, these are physical barriers that prevent people with disabilities from accessing health services. They’re not deliberate, but they have long-term consequences that are easy to forget.

In praise of speech-to-text software

25 November, 2010accessibility, Accessible Tech, happy posts, technologyassistive technology, blogging, pain, technology, writingAnnaham

One thing that has helped me quite a bit as a blogger, writer, grad student and person with chronic pain subject to flare-ups has been speech-to-text software. The basic idea is fairly self-evident: You install the software, plug in the headset that comes with it, open up the word processing program of your choice, and start talking.

Repetitive motion is one of those things that can be the bane of one’s existence if that person happens to have chronic pain issues; while there are people who might say, Oh, typing at a computer can’t be that painful or Just work through the pain or some other ridiculous piece of “advice,” typing can, at times, be enormously painful or draining for some folks with pain issues. No matter how much one may want to complete a piece, post or assignment, sometimes it just will not happen due to pain. When it feels like your hands are encased in cement blocks, there is no “working through the pain.” Having your hands and wrists feel like they have been set on fire by pain when you are on a deadline — like a lot of circumstances surrounding pain flares — can be excruciating. It’s kind of like having your hands and wrists feel like the Human Torch, but without any of the cool superpowers.

With speech-to-text, the additional pain brought on by repetitive typing is significantly reduced, as it takes at least some of the typing (but not editing, as I will address below) out of the equation. There are some additional issues to consider, however: one is “fibro fog,” the name given to some of the cognitive effects of a fibromyalgia flare, which can, for the person experiencing the flare, make it difficult to put thoughts, words and sentences together with anything resembling coherency. This is more of a condition issue than one that has to do with typing, but it’s fairly obvious as to how fibro-fog could impact the use of text-to-speech: if your thoughts are jumbled because of pain and fatigue, it’s likely that they will be just as jumbled regardless of whether you are typing or speaking into a text-to-speech headset. I’m fairly lucky with fibro-fog myself, as it tends to be rather mild unless I am experiencing a pain flare that feels closer to acute pain than chronic, but typing is one of those processes that can seem bizarrely confusing during a massive pain flare-up (and the whole “simple things as confusing” side effect is damn near impossible to truly understand unless you’ve been through it).

Of course, there are some aspects of text-to-speech software that are less than perfect: similar to the iPhone’s auto-correct feature (some of the amazing slip-ups of which have been documented by websites such as Damn You Autocorrect), speech-to-text software can “read” one spoken word or phrase as something else entirely, sometimes producing hilarious (or irritating) fragments that often make no sense within the context of what you are actually writing. My personal favorite thus far has been my speech-to-text program “translating” Judith Butler as Judas butt lark, which made me wonder if I need to work on my pronunciation skills if only for the convenience of my software program.

There is also the cost issue: many speech-to-text software programs are expensive. In a utopia, everyone who could benefit from text-to-speech programs would have a reliable and fairly-priced one ready for use. I’m one of those weirdos who thinks that accessible technology should not be something available only to those who can afford to pay for it, but that, unfortunately, is most likely a long time coming.

FWD/Forward

FWD (feminists with disabilities) for a way forward