Sunday, February 28, 2010

What's Your Plan: Emergency Alerts for People with Disabilities

Here's social media at a new high - or low. I'm blogging a tweet from disability.gov that includes a pdf file with some recommendations for improving access to emergency alerts. This is just one area that needs attention and improvement. So here is the pdf file. Reading it will give you an idea of the magnitude of trying to improve the current system.

Recommendations: Access to Emergency Alerts for People with Disabilities http://bit.ly/dkO2xO

Yesterday as the tsunami warning sirens blared in Hawaii, I decided I was going to blog about Emergency Preparedness for the disability community.

Disability.gov has an entire page devoted to it. Please take a moment to go over and read what you as an individual can do to improve your preparedness in an emergency. For example, if you need to be contacted by authorities via a TTDY phone, let them know.

There are suggestions for organizations as well, ranging from the media to local rescue squads. I ask you to spread the word to those in such groups so they can join in as recommendations are made.

The gaps that remain may seem huge and, in some areas, they are. Our community is diverse and even those of us with disabilities, who are familiar with what we need, may not know what someone else requires. The needs of a wheelchair user who needs an accessible evacuation point, generally thought of as the only situation, falls far short of necessary planning. TV announcers in Hawaii pointed out that if someone can't hear the sirens, they are useless. What if someone had no transportation to an evacuation point? How about suddenly needing to bring along medication or equipment? Do you have a list of someone to call - or does someone realize you will need help?

People with disabilities who may be self sufficient on a daily basis may suddenly require more assistance during an emergency. All of us as neighbors, co-workers and friends, need to have these discussions before something happens, not during. Whether people have five hours warning- or less- things move quickly when emergencies occur. It's probably best to plan for someone to check in with you, just in case the particular emergency renders your equipment inoperable or blocks your access. Be open minded in your planning about accepting assistance. It's more of a help to rescuers for you not to become a last minute emergency than to worry about inconveniencing someone.

So please - today- not tomorrow- not next week or month, is a good time to consider what you would do in such a situation. Our system is still a work in progress.

Saturday, February 27, 2010

Dear Ann Landers - I'm not surprised

When Ann Landers told off a reader who complained about having to watch a disabled woman eating in a restaurant because she wanted her rights respected, a bevy of folks wrote in with gems of their own on this issue.

One suggested a special section for handicapped folk - perhaps with palm trees "so they are not seen by" other diners. Another reader claimed handicapped folk just like to flaunt their disabilities to make able bodied people feel guilty (yes, it's all about them!) and he/she is too savvy to fall for that trap (watch out if you live in Sacramento for this one). A third one accused relatives of parading handicapped folk around- to make themselves look good.

Ann Landers says these folks are too far gone to write back too.

Sadly, this doesn't surprise me. I've run into some of these folks out there.

Friday, February 26, 2010

Tech advice from the heart

Today I'm busy dealing with snowstorms and work.

But over at The Site That Breathes, Jenni has put up a creative post you won't want to miss called Installing Love.

Thursday, February 25, 2010

Photo shows model not "confined to wheelchair"; caption says otherwise

Shannon Murray, a model who is also a wheelchair user, is the first disabled model used in a High Street retailer's ad campaign, according to the Daily Mail.

The model is hoping that the kinds of images used will challenge preconceptions and assumptions, but ironically the caption under a photo showing Shannon Murray out of her wheelchair, laying on the ground with her feet up on the seat of her ultralightweight wheelchair, contains the still often used description "confined to a wheelchair".

It's also ironic that the article explaining it continues to use this kind of language, beginning with:

Debenhams is set to become the first High Street retailer to use a disabled model in its advertising campaigns.

Shannon Murray, who is confined to a wheelchair, took part in a photo shoot for the department store last week.


Read more: http://www.dailymail.co.uk/femail/article-1253699/Wheelchair-user-set-disabled-model-star-major-High-Street-campaign-Debenhams.html#ixzz0gZ05JZ4l

Tuesday, February 23, 2010

Meet the host country's 2010 Paralympic Ice Sledge Hockey team

This video about Canada's Paralympic Ice Sledge Hockey team includes interviews with players and coaches and also explains the equipment that's used in the game.

Monday, February 22, 2010

8 year old plays sled hockey

This is a great time, with the Paralympics coming up, to run this story about 8 year old Danny, who has played sled hockey for four years now. When he was in kindergarten, he says , he asked his mom to find some sport for him to do. Now he plays hockey.




You can read the rest of the story here. Maybe one day Danny will play in the Paralympics.

The Paralympic team says they are aiming for gold!

Saturday, February 20, 2010

Disability humor: How does it feel to be the only nondisabled person in the room?

I guess it's better late than never to weigh in on the issue surrounding the Family Guy controversy involving humor about disability.

As I've written about before, the subject of humor and disability is a ticklish one. I live surrounded by humor about my disability. In fact, I'd hate to be a quadriplegic who didn't have a sense of humor. but it's a lot different for me to make a joke about my disability than to be turned into a joke by someone else. People I highly respect in the disability community have pointed out that humor about disability,when created by people with disabilities, is the most acceptable form. Interestingly enough, however, disabled people are sometimes told what we can or cannot laugh at about ourselves, perhaps because it makes nondisabled people uncomfortable.

For example, the other day when I was on Twitter, I saw Roger Ebert tweet that he was giving up eating and drinking for Lent. This is an example of a form of personal disability humor, one that I often use. It would come across a lot differently if someone else made this joke. That's an important distinction.

Nondisabled people sometimes say they don't understand the difference between appropriate and inappropriate disability humor (i.e., jokes that demean, objectify, label and dehumanize people with disabilities). But these nuances aren't so hard to understand. Humor is used this way in different social groups all of the time. There's a sense of appropriateness and inappropriateness about making certain jokes that all of us learn to navigate within and without various social cultures.

The problem with the disability community and humor is that our society is far behind in accepting the fact that there is a disability culture. It's yet another step for it to be recognized and treated with the equivalent respect of other cultures. Because of this, people are slow to perceive that they are held to a standard of social appropriateness when it comes to making jokes about disability. There are examples all over the Internet of inappropriate disability humor, if you can even call it humor. Not a day goes by where I don't read a comments section, a blog post, or a tweet and see inappropriate, crude attempts at disability "jokes". It's rampant. But I think this debate about what jokes are appropriate is like putting the cart before the horse, at least to some extent.

First our society needs to recognize disability culture , which has its own rules, as well as diverse opinions. Like any other culture, we aren't going to agree all of the time, but there are certain basic standards of conduct that exist.

Secondly, as long as negative assumptions about disability continue to be tolerated in our media, language and institutions, attempts at disability humor will contain the worst of those assumptions. Not recognizing this can turn a discussion about a particular incidence of disability humor into a worthless academic exercise. We need to look at the roots behind the problem when offensive jokes are made. More importantly, we need to find solutions to the issues that keep people with disabilities disenfranchised and out of the mainstream.

Next, it is time for those of us with disabilities to speak up about these issues. For so many years, issues of mobility, low employment rates resulting in poverty and other factors have kept the voices of disabled people silent. This has changed as technology levels the playing field somewhat, at least online. Suddenly people with disabilities are present- in chat rooms, on Twitter, on Facebook, on blogs, etc. When we speak out, it isn't for the purpose of "educating the nondisabled" (which is not our job), but to express what our thoughts are on a particular subject as a person living with a disability.

This is an important distinction. Some nondisabled people are ineducable or unwilling to be so. They feel it's appropriate to put the burden on the disabled person when they are the ones who feel uncomfortable being around us. Some of them use sophomoric humor to deal with their discomfort. This is inappropriate in and of itself. Those of us with disabilities know what it feels like to be the only disabled person in the room. It is time to ask the nondisabled to shoulder their responsibilities in this regard as we finally assimilate into our society, as we should have done years ago.

When we look at all of these issues, it's clear why some people are having a hard time listening to the thoughts of a disabled actress who played the part of the disabled character in Family Guy about the situation. Yet it's important to recognize the progress inherent in this situation- that the part was played by a disabled actress, for example.

It's also time to deal with the real issues.

O.P.EN. that door

The students at Gulliver Prep are at it again - designing assistive tech devices for those with disabilities.

The Operational Portable Entry Device aka O.P.EN., might win them a prize this Thursday at the National Engineering Design Challenge in Washington, D.C., but they say that's not what it's about anymore. The device "uses a telescopic mechanical arm with a clamp at the end to open doors. When attached to a wheelchair, it pivots horizontally and is adjustable vertically." It's shown in the video below.




Good luck to these hardworking students!

Friday, February 19, 2010

Aimee Mullins: The opportunity of adversity

This video is all over the internet- I saw it last night and wanted to post it. Aimee Mullins, a Paralympic runner, talks about how the language we use about disability impacts our lives and how releasing the concept of normalcy would free the potential of many of our children.


Thursday, February 18, 2010

A college student with CP talks about assumptions about disability: "It's not that I'm not able"

via YouTube:

A University student with a disability, Ashley Anderson, discusses the struggles of campus life in a wheelchair and misconceptions about her disability in a strikingly honest way.
Filmed and Edited by Eva Andersen


Monday, February 15, 2010

Living in Northern Exposure

My friend in Delaware, who has seen 4 feet of snow in the past week or so, tells me that her dog now has to jump to go out to do his business. It's making him cranky.

I told her that things are a bit tense up here too. I spent the week dealing with power outages and a falling tree. In between the flickering lights and the decreasing temperatures in the house, I heard a cracking sound and a large thud.

When I looked outside, I saw that a pine tree had fallen over onto the porch. It was blocking the ramp, although, realistically speaking, I wasn't going anywhere in the blizzard.

There was a comical scene the next morning after the snow stopped. I stuck my head outside, my wheelchair caught in the branches of the pine tree. I could move - maybe a foot. The porch was covered with snow drifts.

My neighbor looked over, leaning on her shovel, and asked "Is everything alright?"

I think maybe that could win a caption contest.

All of this snow is doing something to everyone. The Winter Olympics isn't helping. That's just looking at more snow, even if it's shipped in.

I remembered this episode of Northern Exposure. It shows what happens when people get cooped up too long in the snow. They do things that are - funny. And that's good.

Because there's more snow on the way.

Friday, February 12, 2010

Haitian orphanage for children with disabilities: Mercy & Sharing Orphanage

The Mercy & Sharing Orphanage in Haiti houses 106 children, 70% with disabilities. They've applied to accept another 100 and have the room for them. The need is critical since it's one of the few places that accepts children with disabilities. Please watch the video below to see what kind of work they do.



I also found this blog post from a student who visited there in 2008 talking about (back then) the need for wheelchairs and other medical equipment. Erin saw children who weren't able to get out of bed because there were no wheelchairs, children who needed surgery for contracted limbs, and a lack of basic equipment. Her group organized donations from various companies and brought disposable diapers, among other things.

The need for medical equipment and other items will only increase now. Organizations providing such equipment are already working hard to get it to Haiti. We need to continue to support those organizations.

If you would like to directly support the orphanage's work with these children, please go to their site for more information. You can choose to sponsor a disabled child.

Thursday, February 11, 2010

Snow Scapades- of all kinds!

First, two young ladies:

Emma goes out for her first wheel in the snow this winter! She's particularly interested in how the tracks her chair make look in the snow.



Leah had some fun in her power chair checking out the snow:



And check out Westpac Snow Scapade, a day of fun in the snow for 60 kids with disabilities in New Zealand where volunteers assist parents in providing experiences for kids they haven't had before with adaptive sports in a mountain setting.



Trying out new things, opening up vistas- have fun out there!

Wednesday, February 10, 2010

Saying it doesn't matter, when it does

I was reading Dave's post today about his experiences in a book store. He asked a clerk to get him a copy of a book, which happened to be available with two very different covers. When she handed him one with a blue cover, he thanked her, but asked for a book with the other cover. In his words:

She took the book back quickly - not violently but almost - and slid it with a thump back into place. Then she grabbed the other book and handed it to me, turning immediately to avoid any further conversation. I did call to her receding back, 'Thanks.'

...

and he goes on to write that:

Every time I picked the book up and admired the cover, it really is pretty, I thought about the anger it caused and wondered if the amount of pleasure I got from the cover was enough to justify the upset it caused. I would sometimes think, maybe even wish, that the clerk - at the same time was wondering if her momentary display of anger was worth the effect it was having on her sense of self.


Now imagine this being repeated over and over in the course of a number of hours, days, weeks, months, even years, when a resentful, angry person responds like this when you as a person with a disability make a choice. Maybe it's a store clerk, a healthcare aide, a teacher, a gas station attendant, a waiter, a friend, a lover, or a parent.

Your choice - or even initial request- is seen as extra work. It's an inconvenience. So when you make a choice, you're left feeling as if you've done something wrong. If you express a preference, someone acts out. Ironically, because they have a title or power, they may even label you as acting out- just for making a choice.

Their reaction may be passive or outright anger. Sighing. Heaving. Verbal retorts. Arguing. Complaining. Or worse.

Makes me wonder if "learned helplessness" is really that or an intelligent choice in the face of these situations.

"Any color is fine." "Doesn't matter which flavor it is." No, don't rock the boat. Just don't say anything. This can even lead to not asking in the first place.

The funny thing with this, I've found, is that it doesn't matter , for example, whether the help is paid or volunteer if a negative attitude is present. Doesn't matter if your choice- or request- was unreasonable or not. Doesn't even matter if it was an important choice- or request, as in letting someone know you have a serious food allergy or they may break your equipment if they don't handle it a certain way or if you're going to be left hungry or cold.

This may not seem like a big deal to someone who doesn't have to ask for assistance with many physical tasks. But for those who do, it leads to real problems when you get into a care situation, where this attitude can run rampant. Take Elizabeth's situation, where she says because it's the night shift, the aides apparently feel they should sleep too. So expecting an aide to work the hours they're paid for, means they won't work for you any more? Kind of a frightening consequence when there's a shortage of aides.

Even in those situations where the consequences aren't as dire as going without basic help, as Dave writes, it can be an unpleasant experience to be treated this way:

But as I drove up to the counter I began to wonder if I had been over-selective, if it really made a difference to have the one cover, not the other, if I had been an annoying and pushy cripple. As much as I try, when others are mean to me, I always assume I deserve it. I analyze all the ways that I 'set off' or caused the other's attitude or distress.



Not saying anything may, at times, be a reasonable decision. People get tired. They have their own stuff to take care of. They may be overworked. All of this is true.

But when people with disabilities have to say it doesn't matter, when it does, all or most of the time, it's a sign of a bigger problem. And when they experience such negative reactions that not even asking for help in the first place becomes the most intelligent choice, that's the result of attitudes in our society toward those with disabilities.

It's called ableism.

Tuesday, February 9, 2010

Accessible solutions for the iPad

Matt sent me two articles about using the new iPad if you have a disability, which I'm passing along because they're pretty useful. They both come from ATMac, which covers using Apple products if you have a disability.

In the first article, Ricky Buchanan writes about new accessible features as well as those already on the iPod touch. Ricky lives with severe CFS/ME and also writes a blog.

The second article is written by Paul Natsch, a quadriplegic, and discusses using mouthsticks and styluses with the iPad. He gives very specific information about how to use the iPod touch (and the iPad) in different ways, depending on your needs. Paul also writes about Assistive Gaming on the Mac.

A less expensive alternative than the new iPad, as Paul discusses, is to use an iPod touch as an assistive device. Although the larger size of the iPad would help some people, the smaller size of the iPod Touch has its advantages as an assistive device. I use an iPod Touch for many tasks, and because there are so many free apps, its usefulness keeps growing for me without any additional cost. I now keep the iPod touch nearby most of the day to help me with my work, read ebooks and documents, take voice memos, use Skype (with a mic), do calculations and more.

Sunday, February 7, 2010

Better than a Superbowl commercial: Disabilities and Decent Work

Marlee Matlin talks about employment and people with disabilities in this PSA.



h/t Media dis&dat

As It Is In Heaven

Last night I watched this Swedish film about a world famous conductor who returns to his boyhood home. He directs the small church choir, finding community, fulfillment and redemption. His presence transforms the small village, creating ripple effects as the choir members grow and change.

The movie also explores themes of inclusion when a disabled young man joins the choir. The film is remarkable for its portrayal of community and its captivating story lines and characters.

Saturday, February 6, 2010

Tom Brown's Hollywood Days

For some reason, my Google reader is pretty empty this morning. Are people out playing in the snow? Have my favorite bloggers lost power?

I have no idea, but I ran across an interesting article about the increasing trend in schools toward punishment. It makes some excellent points about how zero-tolerance policies are not working effectively, not to mention how school searches by outside security guards affect students negatively, particularly in urban areas. It raises serious questions about how power leaves the hands of school administrators and teachers in dealing with the students.

How school reform has changed over generations has been on my mind since I watched the most recent version of Tom Brown's School Days this week. It's the story of an 11 year old boy who transfers mid-term to a rugby school and becomes the target of a bully at a school where the headmaster is seeking reform.

It's amazing how many movie versions there are for this novel. Freddie Bartholomew was in the first one and that was followed by versions in almost every decade. This clip from the first movie gives the background story of the headmaster, Dr. Thomas Arnold, who sets out to rid the school of tyranny in exchange for more freedom. Hmm. Zero tolerance policies and security guards?



The 2005 BBC special had its bleak moments and a much more serious tone, unlike the 1971 version, which seemed to contain a lot of stilted dialogue and affectation.



YouTube also has a clip of the 1951 version. Tom Brown arrives with a perpetually worried look in that version, as well he should if he's read the script. Tom's no sooner off the stage coach than he's greeted by East, another student, who yanks him aside to hide near a tree when Flashman, an upperclassman, walks by. When asked by Tom why East is avoiding Flashman, Tom receives the ominious reply "You'll find out."



In the 2005 version, Stephen Fry plays the headmaster, Dr. Thomas Arnold. Although he wants to get rid of the bullying, he winds up playing the bully himself in a scene where he raps the knuckles of a student for lying, when the boy is telling the truth. And when Tom tries to handle things himself with the bullying, it all goes awry. Poor Tom gets beaten, berated and even burned.



Tom and East have a victory over Flashman and robust Tom miraculously heals from all of it. In the end, Tom is appointed by the headmaster to watch out for a frail new student, George Arthur, who is, in turn, bullied with tragic consequences by Flashman.



It's curtains for well-connected and wealthy Flashman, who is sent down in a scene akin to "don't let the door hit you on the way out" by the father of a girl he impregnated. (But have no fear, he comes back to life again in George MacDonald Fraser's book named Flashman. )

As for Tom, he becomes close to Dr. Arnold and the 1940 version ends with Brown going off to Oxford and the headmaster ill.



The movie ends with the caretaker saying "Funny thing, sir. Boys come and boys go, but we go on forever" followed by an image of the headmaster's gravestone which just goes to show that headmasters come and go too, as do reforms of all kinds. And bullies. And adolescence itself.

Not to mention movie versions. Ah, Hollywood.

Canine advocacy program

I received an article from a friend about the Canine advocacy program in Michigan.

Amos, a two-year-old lab mix, visits court rooms to work with child witnesses in cases of domestic or sexual assault.

The article says:

The idea of using dogs to ease courtroom tensions is not new and is gaining popularity across the country. Courthousedogs.com began in Seattle when an assistant prosecutor in King County, took her disabled son's service dog to work one day a week and discovered that the dog had a profoundly calming effect on young witnesses. Now that county, and others in Texas, Georgia, Montana, Florida and Maryland have dogs working courtrooms.

Friday, February 5, 2010

Thursday, February 4, 2010

Cloudy- with sunglasses

I was reading the news when I ran across this article about a NY driver who was ticketed for using a mannequin to drive in the car pool lane. The police figured out there might be a scam because the mannequin was wearing sunglasses on an overcast, cloudy day.

It reminded me of the people I run into who cheat using handicap parking. This is particularly frustrating in an area where it's crowded. Not being able to find a spot can mean having to leave without doing an errand, but it can also mean missing or being late for appointments.

It does no good to say anything to those who cheat. They're full of rationalizations. "No, I'm not disabled, but my husband is. This placard is legal! I do it all the time." And on and on. This is one of the most frustrating experiences - to see a nondisabled family member using the placard when no disabled passenger is even in the car. Then there are those who have no placard and just gamble on the fact that the police won't catch them. Or those who obtain temporary placards and continue to use them beyond the expiration date.

It's all cheating. On the Philadelphia news, there was a story about a guy who tried to sell a placard on Craigslist. NBC10 investigators went undercover to bust him after a wheelchair user seeing the ad got nowhere calling police and the DMV.

View more news videos at: http://www.nbcphiladelphia.com/video.



And so it goes on. However, the good news is that some states are cracking down on handicap parking abuses.

Too bad it's not as easy as spotting a mannequin with sunglasses on a cloudy day.

Tuesday, February 2, 2010

Michigan disability advocate dies at 84

In 2003, Forrest Fynewever'said in an interview that:

"I used to be told that there is no sense in being given a college education because no one hires crippled kids, crippled people. Well, I fooled them. And they may have been right at the time. We had overcompensated for our disabilities, and let people know that we were people. I am a person who happens to have a disability, I am not a disabled person. ... I use a wheelchair, I occupy a wheelchair, but I am not bound to it."

Fynewever, who had polio since the age of 2, became an engineer, married and raised four children. He said his advocacy was successful because he was persistent. He grew to believe that "people with disabilities were tolerated, rather than accepted" and welcomed people approaching him.

The retired engineer worked to improve access to public transportation and parks, for curb cuts, electric doors in buildings, and for access in city hall. He died Friday at the age of 84.

Monday, February 1, 2010

The History of My Shoes and the Evolution of Darwin's Theory, by Kenny Fries

I've been reading Kenny Fries' book The History of My Shoes and the Evolution of Darwin's Theory. It says much about the experience of living with a disability.

Because there is so much written about that experience and disability in general which is fraught with assumptions and misinformation, it's refreshing and reassuring to see writing like this. I find myself taking deep breaths and feeling centered as I read the prose, remembering how it is when I'm around other people with disabilities.

I miss that experience for many reasons. One of them is that there's an awkwardness about how some non-disabled people relate to disabled people. There isn't the usual banter between us, but these strained questions about how I do things. It often makes me feel as if I'm on a stage or in a 24-hour disability simulation.

"But if you're a quadriplegic, how do you type?" "How do you get dressed , or go to the bathroom or get into your bed?"

My answer these days is to suggest that they go to YouTube, where there's a plethora of videos done by quadriplegics to illustrate these very things.

Less common are the nondisabled people who ask how my job is going or if I've seen the latest movie. Those conversations happen more frequently with my disabled friends.

On page 110, of Kenny Fries' book, he writes about how nondisabled people generalize about his sexuality based on knowing another disabled person. Fries tells a colleague who assumes that "people are very interested in how disabled people have sex" that most people don't think of disabled people as being sexual.

The book also discusses how "our culture demands explanations about most disabilities"and how disability becomes a story "with a hero or victim" and therefore a problem of the individual, "not a category defined by the society." The author explains how this keeps the "dialectic of normalcy" intact.

As I was reading this, a lightbulb went off. This is all so true - and so limiting to ways of relating. Not only are constant questions about what my story is regarding my disability annoying, they are intrusive. Complete strangers ask "What happened to you?" upon sight. Acquaintances paint me as a hero or victim, and then don't understand when I show no interest in their take on my life.

It's naïve to think this way of relating doesn't box people in. When I was seen as a hero, which often happened when I was playing wheelchair sports, the minute I mentioned I worked during the week as a professional, the reaction changed. "Oh, so this is just a hobby?" the person would ask, disappointed. The hero story apparently required a full-time commitment to chasing a little ball around a tennis court. This is how predictable reactions to disabled people can be and are.

I really wish more people would pick up Kenny Fries' book. I've barely touched the surface of what it contains. There is so much more in there for both disabled and nondisabled readers. He somehow managed to set aside any self-conscious voice as he writes about growing up with a disability, making decisions about medical surgeries, and his relationship to the shoes that allow him to navigate the world.

This even includes a piece about how a replacement pair of shoes are useless to him. If only some durable medical equipment providers would read this! Those of us with disabilities know what works for us. Although it's fine to try something new and improved, having that thrust upon us with no choice can leave us immobilized.

Luckily, relationships are more diverse than that. Yet I can't help but wonder, how refreshing it would be if more people would pick up this book and begin to understand that effectively navigating the world is not just a dream for the disabled, anymore than it is for the nondisabled.