No Pity: A Community for People with Disabilities

right to die 'debate'

Mon, 06 Oct 2008 12:29:35 GMT

http://www.washingtonpost.com/wp-dyn/content/article/2008/10/03/AR2008100301974.html

despite the superficial 'fairness' and discretion that's allegedly maintained about a hypothetical situation.... why do i fear that poor crips and mood/cognitively challenged people with brain damage like myself will be the first in line for harvesting, with such a fluid definition of death that is determined by how much money insurance will cover for end of life care? or how much a potential donor is willing to pay for a transplant? maybe not, in 'the best of a possible worlds' (snark), but the article has my hairs stand on end.

a story in massachusetts (where i live) points to this very reality of the life support being pulled for lack of funds on medicaid. i tries to google it after reading the article on the woman a few days ago, but can't find it.

Disability culture values

Sun, 05 Oct 2008 00:58:11 GMT

I came across these while doing research for a talk I'm going to give on health care and disability for a sociology course. It's a list of disability culutre values taken from a 1995 paper written by CJ Gill. I found it kind of interesting, since I value being part of disability culture but have had trouble defining it in the past. So I was curious what others felt about the list. Anything you disagree with? Anything you'd add?

Values

1. an acceptance of human differences,
2. a matter-of-fact orientation toward helping and being helped,
3. a tolerance for lack of resolution or cure, and dealing with the unpredictable,
4. a sense of humor about disability
5. skill in managing multiple problems,
6. a carefully honed capacity for closure in interpersonal communication,
7. flexible, adaptive, resourceful approaches to tasks and problems,
8. an understanding that needs are different depending on the level of dependence, and
9. interdependence valued more than independence (the opposite of the value system in the able-bodied population).

Tradeshow for people with disabilities

Fri, 03 Oct 2008 21:04:02 GMT

DBA celebrations of National Disability Awareness Month.

Celebrating Community Impact

(Portland, Oregon) DBA is celebrating National Disability Awareness month by hosting a mini-conference and tradeshow supporting entrepreneurs with disabilities in starting or growing their business in Oregon. As part of its annual economic impact review, DBA has helped support 94 entrepreneurs, 70% of the participants communicated an increase in knowledge of skills for running a business and 36% communicated a 5% improvement in their financial status in their first year of business operation.

Percentage of Entrepreneurs with Disabilities Increases!

According to the Department of Labor, the national census shows that people with disabilities have a higher rate of self-employment and small business experience than people without disabilities (12.2 percent of people with disabilities versus 7.8 percent of people without disabilities.) In addition, veterans with service-based disabilities that are choosing self-employment as an option are increasing according to Veterans Administration Counselor, Jonathan Berreth.

October 22^nd Mini-Conference and Tradeshow from 11 am – 1 pm

The DBA will be hosting a mini-conference and tradeshow to celebrate National Disability Awareness month. On October 22^nd from 11 am – 1 pm the community will have the opportunity to mingle with other entrepreneurs showcasing their products and services. From 12:00 pm – 1:00 pm Kedma Ough, DBA Director will be hosting a ‘Bartering Session’ at the AVITA training center. The bartering session is open to the community and will include a step-by-step process on bartering for goods and services to grow your business.

October 23^nd Mini-Conference and Tradeshow from 4 pm – 6pm

The DBA will be hosting its second mini-conference and tradeshow to celebrate National Disability Awareness month. On October 23^rd from 4 pm –6 pm the community will have the opportunity to mingle with other entrepreneurs showcasing their products and services. From 4:30 pm – 5:30 pm Anne O’Malley, an attorney, will be discussing a ‘Breaking Through Barriers’ at the AVITA training center. The session is open to the community and will include discussion on breaking through barriers to starting and growing your business.

The event will be held at

AVITA Business Center

5257 NE MLK Suite 201

Portland, OR 97211

Phone Number (503) 998-9560

About DBA

The (DBA) is a business association dedicated to supporting entrepreneurs with disabilities starting or expanding their business. As a project of East County One Stop, the DBA provides business support including counseling, training and resources to support people with disabilities. Visit www.dbaoregon.org

Fri, 03 Oct 2008 19:00:57 GMT

Hiya,

I read a really interesting article in Disability Now about carers/PAs being allowed to assist with sexual needs. Apparently the chap writing the article sees no problem with it. I'm not sure a lot of carers would agree to it let alone go ahead. I'm sure it'd cause problems in the future. My own agency is brilliant, but I wouldn't feel comfortable asking for any of that & never would. What do you think of this idea??

While we're on the subject of DN, I remember it being more focused on people with higher care needs (like myself). I found it really useful. I found an ad for my adapted car in there which I love (it's metallic blue & it's got the best sounding stereo *ever*). There was a section where parents told their stories & Mum found that useful. Since it's changed, I can't relate to a lot of its content. I spend less & less time reading it. I find it really depressing, unrealistic [for me] & give or take the odd article, just not that interesting anymore. I want to cancel or just not renew my sub to it -- I'd rather save my money for something I actually enjoy reading & look forward to getting every month -- but as a disabled woman I feel an obligation to carry on being a subscriber. Wouldn't me not continuing to subscribe be like railing against the very things I rely on to *live* as decent a life as I can ? What do *you* think ??

Braille Business Cards?

Thu, 25 Sep 2008 18:28:53 GMT

I work in a Disability Services office at a college.

My predecessor did not use brailled business cards, but I think it's a good idea. We are meeting with more and more people who experience low-vision, and it also raises awareness for individuals outside the disability services world.

Can anyone recommend a good provider who brailles business cards? Thanks!

Philly: protest continues for accessible housing, closing substandard institutions

Sat, 20 Sep 2008 18:46:46 GMT

http://media-dis-n-dat.blogspot.com/2008/08/adapt-protest-seeks-to-close.html

FL: people with disabilities demand an end to institutionalization in class action lawsuit

Sat, 20 Sep 2008 18:40:30 GMT

http://news.yahoo.com/s/ap/20080920/ap_on_re_us/medicaid_lawsuit

activists fight for accessible housing after last year's HUD debacle

Sat, 20 Sep 2008 18:25:12 GMT

http://www.duhcity.org/

a website made by ADAPT organizers to track the trajectory of protests in DC

(1) NYC prosthetist; (2) NYC ADA attorney

Thu, 11 Sep 2008 18:43:59 GMT

Hello, everyone--

(1) Can anyone recommend a prosthetic leg maker in NYC? I picked United Orthopaedic "off the rack" last time and had a bad experience. My usual "leg man" lives in a distant land and has no ideas.

(2) How about an attorney familiar with the ADA, etc.? I have tried New York Lawyers for the Public Interest and am calling Cardozo's Bet Tzedek legal clinic as we speak.

Thank you very much!

--skbw

Wed, 10 Sep 2008 13:24:49 GMT

Hi there,

There's a group of us conducting a survey on captioning/ subtitles in the theatre, and we would love to have people fill in a short questionnaire of their experience(s).

Please note that this is open to Hearing, Hard of Hearing and Deaf people, from all countries and regardless of whether its been a good experience or bad.

We only ask that you have seen at least one captioned performance in a theatre, -no movies/films.

Fill out!

Thank you very much for your time, and please feel free to pass this on to anyone else you feel could contribute.

Paralympics

Wed, 10 Sep 2008 03:13:11 GMT

I dont know if it has hit LJ world yet, but in the US the Paralympics are actually on television in the US for the first time. They are being broadcast in limited form on Universal Sports, available on some HD digital cable packages.

Also, on demand coverage is available on the internet at www.universalsports.com
Check it out!

Disability is not Diversity?

Sun, 07 Sep 2008 02:24:24 GMT

It just struck me that whenever diversity is talked about, disability is almost never included. We'll talk about how racial minorities, and GLBTQ people were well-represented at this year's DNC but not at the RNC, but what about people with disabilities? Do we not count? Do we not have a voice?

Having a Disability in China

Sat, 06 Sep 2008 16:48:08 GMT

By Maureen Fan
Washington Post Foreign Service
Saturday, September 6, 2008; A10

BEIJING -- In recent weeks, Beijing's brand-new airport has been able to give a special welcome to thousands of Paralympic athletes from around the world
because the government spent $1.7 million to lower washbasins and handrails, add Braille signs and transform 214 toilets into the accessible variety.

But in south Beijing, a former coal miner needs a nurse to help push him up a too-steep ramp leading to his apartment building. He has trouble boarding
taxis and buses and finding restaurants without steps. He can't use a public toilet.

China
is trumpeting the
Paralympics
as a way to improve awareness and better integrate its more than 83 million disabled citizens, almost a million of whom live in Beijing. But the reality
is that China's disabled are largely invisible, dissuaded from going out in public by a lack of physical access, a deficit of jobs and routine discrimination.

"I need someone to lift me into a taxi and fold the wheelchair, or carry me on his back onto a bus," said Zhi Fumao, 48, whose legs were paralyzed in a
mining accident a few years ago. "Public toilets have no arm rests; I can't squat."

Every city in the world could improve its facilities for the disabled, but in China, a traditional respect for the elderly and the weak has been eroded
by Communist political campaigns and an overall lack of awareness of civil rights, according to advocates for the disabled.

In interviews with scores of people disabled by on-the-job accidents, car accidents, and diseases that in other countries would be curable, most said there
was little they could do.

"Chinese government and society tends to treat the disabled with condescension, treating them like a charity case instead of giving them equal respect,"
said Meng Weina, head of the Beijing-based Huiling Community Service for the Mentally Disabled. "The big picture in China is, not only the disabled but
even ordinary people lack civil rights."

Meng blamed the Cultural Revolution of the 1960s and '70s, which ruptured family ties and smashed Confucian traditions. "After the liberation of China,
the government launched too many movements which broke people's harmonious relationships," she said. "People don't have enough morality. The reform of
China should restore those lost parts of our culture."

China has made progress, including providing handicapped-accessible buses; adding wheelchairs at park entrances; installing elevators in the
Forbidden City,
the palace of the former emperors; and building miles of bumpy, raised-patterned sidewalks for the blind. Conditions in Beijing are far better than in
provincial
cities and rural areas.

But officials have failed at enforcing the rules and creating public awareness. As a result, sidewalks for the blind are sometimes blocked or in places
of limited value. Wheelchair ramps are not built long and low according to standards but short and steep, in order to save money. Restaurants regularly
turn away those with physical deformities, advocates said.

"Disabled people are afraid to go out because people mock them. 'The way you look, how come you still go out?' they say," said Wu Runling, whose legs became
deformed after he contracted a virus as a child. "Many parks now offer wheelchairs, but it's just for show. If you want to use them, there is no air in
the tire or there is only one wheelchair and two or three of you."

Guide dogs, which cost more than $10,000, and artificial limbs, which run upwards of $1,400, remain prohibitively expensive to most Chinese. Only six people
and an arts association on the mainland own guide dogs, said Guo Xinglin, a trainer at the four-year-old China Guide Dog Training Center in Dalian, the
only one of its kind. "It is a problem of Chinese law. No law allows the guide dogs to enter public places," he said.

"If I want to go to the supermarket, the blind sidewalk cannot help me. Among my blind friends, no one depends on the blind path to go out," said Zhang
Liang, 35, a blind massage therapist who like many sightless Chinese was forced to take on this profession. He lives in a back bedroom of his first-floor
two-room clinic near the Eastern Third Ring Road. "Traffic in Beijing is so complicated and dangerous, I can't deal with it independently."

Near the Chang'an Theater in downtown Beijing, Wang Jianguo, 38, said he lost his left leg because of inflamed blood vessels. Xing Shengyou, 56, lost both
legs in a car accident more than 10 years ago. Both men now eke out a living offering passersby rides on their specially modified motorcycles, which like
all motorcycles are illegal in downtown Beijing. They ride during off hours, hoping to reduce the chances of getting caught by police.

"We ride in the street randomly," Xing said. "If we meet customers, we make 40 to 70 cents per ride. Although our life is hard, it's better than being
a
beggar. We have to depend on ourselves. What else can we do?"

Last month, Zhang Yuncai and his parents took his two brothers, who are largely paralyzed, to the nearby city of Tianjin. At the railroad station in Tianjin,
a ramp for the disabled was blocked by bicycles. When Zhang tried to move the bikes, railway staffers argued with the family.

"My brothers love to go out. If they stay at home too long, they feel low," Zhang said. "I hope that after the Paralympics, more people will understand
and care about the disabled."

Today's education campaigns may be having some effect. Bus drivers, who sometimes fail to stop at rush hour for wheelchair passengers, have become friendlier
and more likely to stop during the Olympics and Paralympics, a special period for which city officials tried to train the entire city to be polite to its
guests, many disabled people said.

Beijing has also trained thousands of volunteers in sign language and taught security guards how to search the disabled while respecting their privacy.
But old attitudes linger: An official manual distributed to 100,000 Olympic volunteers sparked outrage this year by describing the disabled as "stubborn
and controlling," as well as "defensive with a strong sense of inferiority."

Many disabled people here said that in sum, the Paralympics, which begin Saturday and last 11 days, are of limited value for the average Chinese citizen.

"Athletes who attend the Paralympics can benefit from it," said Zhang, the massage therapist. "When I was in school, there was only one major. I had no
choice. Now, the blind can also choose music or literature, but only a small number can find work in their major. I recently met two blind people who studied
computer science but they still have to work as massage therapists."

Limits in education mean an inability to find work, and that is one of the main reasons for the disparities, according to a former secretary of the China
Disabled Person's Federation.

"Society should fit the disabled, instead of expecting the disabled to fit into society," said Ding Qiwen, a researcher with the federation. "China has
done a lot in trying to make up for this, in education and in providing work skills training, but for most of the disabled in China, these things are still
unreachable. The disabled in western and poor areas of China are still struggling to survive."

News researcher Zhang Jie contributed to this report.

article appears at:
http://www.washingtonpost.com/wp-dyn/content/article/2008/09/05/AR2008090503410.html

© 2008 The Washington Post Company

I think sometimes we forget how lucky we are. We struggle for equality, even still, but I think we easily forget those of us who live in conditions far inferior to our own. What a place to have the Paralympics this year.

Any crafty disabled people here?? Need Help with Making Earrings

Sat, 06 Sep 2008 15:02:57 GMT

Hiya,

I do apologise for this being a bit trivial in view of what some of you have to go through (feel free to delete it if it's not wanted) but I'm trying to make some earrings for myself.

I've spastic CP & fine detail is a real problem for me. I don't want the finished result to look like a 5 y.o. has made them. I have to be really careful with jewellery anyway, not only because a *lot* makes me itch, but because most that I've had over the years has been lost, broken, dropped or run over by my wheelchair. That's why all mine is cheap.

I've found *one* pair that look anything like what I want, here's some photos:
http://img.photobucket.com/albums/v253/gwemisa/Jem/IMG_2530.jpg

http://www.jemandtheholograms.net/images/PDVD_028.BMP *hangs head in shame*

but I get numbers & money muddled up so ordering overseas would cause more problems than it solves [they're in the US]& with my track record they'd get lost anyway. Everyone has suggested I either forget the idea, or make them myself (& modify them slightly) Any ideas ??.

UPDATE:I had some made out of plastic but as soon as I put them on my ears they made them itch so I had to take them apart. Then I found some the other day. I FOUND SOME !!! I've painted them with clear nail varnish anyway. They aren't exactly the same but they're the closest I'm going to get over here. I was overjoyed (so was everyone else -- they were fed up with looking.)

I really don't think they were/are meant to be proper earrings in the 1st place -- the fact everyone's hair is all the colours of the rainbow tells you something -- or that the writers reckoned there'd be a stupid idiot (me) trying to make them.
Thanks again.

Sat, 06 Sep 2008 02:57:36 GMT

I know from the moderator of this community tikva that no American TV stations are showing the Paralympics. I'm assuming several other countries in the world have the same problem.

Thought those of you unable to watch it on your TV might be interested to know that the torrent site http://www.uknova.com is uploading the BBC's nightly highlights programme as well as the opening and closing ceremonies.

The Beeb is showing the Paralympics for 6 hours a day. There is a Paralympics requests thread in "show requests" section of the forum, if you want to see anything specific in greater depth than just the highlights.

Don't bother to ask me for an invite code though. The site doesn't do them. You just have to keep hitting the "signup" page until an account "vacancy" becomes available.

Website Accessibility Question

Wed, 03 Sep 2008 16:18:43 GMT

For those of you with sight problems, what's the minimum font size you consider acceptable for a website? I know it's more polite to use percentages for fonts instead of specific pixel-sizes, but I'm trying to find a way for the design to look right *and* for it to be accessible.

Disability History

Mon, 01 Sep 2008 22:48:19 GMT

Hi everyone!

I did a little searching earlier and couldn't find a community that had anything to do with disability history. The only thing I could find remotely related to it was a bunch of groups dedicated to having no children and neo-Nazi groups. I thought there should be a community on LJ that balanced the scales a little. I think that history is important to any social group, and our's is one that is not well-known nor often discussed. I hope you all will join community.livejournal.com/disability_hist and begin discussing!

Accessibility Ratings

Mon, 01 Sep 2008 03:43:34 GMT

I don't know if anybody's seen this, but the writer of The Traveling Wheelchair blog rates the accessibility of various businesses and institutions (primarily in Massachusetts) - pretty detailed descriptions, with a subjective star-ranking system.

UILC Holds 18th Annual 5K Run and Roll

Fri, 29 Aug 2008 21:31:28 GMT

August 29, 2008

For further information contact:
Kim or Debbie: 466-5565
www.uilc.org

UTAH INDEPENDENT LIVING CENTER
HOLDS 18th ANNUAL 5K “RUN AND ROLL” RACE

Saturday, September 13th, The Utah Independent Living Center (UILC) will hold its 18th Annual 5K “Run and Roll”. The race will begin at 9:30 AM with registration at 8:30 AM at the Redwood Recreation Center (3060 S. Lester St. (1595 W.) in West Valley) and chart a course down Lester St. to West Parkway Ave. Proceeds from the 5 K will go toward continuing UILC’s 26 year tradition of increasing the independence of people with disabilities. UILC is a private non-profit, non-residential agency that provides independent living skill training to people with disabilities in order for them to live more independently in their comminutes. UILC teaches classes such as cooking and nutrition, communications skills, financial management, and public transit usage. Other services include recreation, deaf enhancement, assistive technology (AT), nursing home transition and diversion, an AT Loan Bank, and a youth program. UILC provides information, advocacy, public awareness, and education on disability issues. Race pre-registration, before September 13, is 15 dollars. Registration on the day of the race is 20 dollars. The registration fee includes t-shirt and all present are entered into a post-race prize drawing. For more information, call Kim or Debbie at 466-5565 or visit www.uilc.org.

Reading Lists

Tue, 26 Aug 2008 17:04:36 GMT

I run a program that offers ability awareness programs to local schools. Does anyone know of any disability related books that would be good to add to reading lists for school kids of all grades and ages?

Specifically we focus on physical disability.

"Shallow End of the Gene Pool"

Thu, 21 Aug 2008 15:22:11 GMT

Rob used the phrase "shallow end of the gene pool" while we were watching a movie last night. It's a phrase I've used in the past. But last night was different, because now I know where that phrase originated from.

And I don't think it's funny anymore.

I don't think it's funny because I know that people with "feeblemindedness" (i.e., epilepsy, learning disabilities, developmental disabilities, or "loose morals") used to be sterilized, by force, in the US, and that our eugenics program was an "inspiration" to the Nazis.

I don't think it's funny anymore because society assumes a life with a disability is worth less than a life without one.

I don't think it's funny anymore because a fetus with a disability, or with a high chance of having one, is more likely to be aborted than a fetus without one.

I don't think it's funny anymore because I used to think that it would be better for me not to have a baby than to risk having one with JRA, because I didn't want to put the child "through that".

I don't think it's funny anymore because I know what it felt like to get off of the Special Ed bus with all my classmates watching, assuming I was Less of a Person than they were.

I don't think it's funny anymore.

No More Nursing Homes

Thu, 21 Aug 2008 01:13:49 GMT

ADAPT Protests Nursing Home

advice wanted -- anyone ??

Sat, 16 Aug 2008 17:46:56 GMT

Hiya,

I have a bunch of carers who come every weekday morning & take me out twice a week. I don't have anything in common with most of them, & probably never will. We are completely different people. If you were to meet me, you'd know what I was into, what I like & don't like, etc. straight away, but this lot don't seem to enjoy anything. [I really don't know how anyone can live their lives like that but there you go.]
I can't join in with half of what they talk about anyway, because it's always about things I can't physically do now (or was never able to do in the first place) So what do I do?? What do I/we talk about??

Also, I'm still at a bit of a loss with how to treat them. If someone is in your house everyday (especially doing pretty much everything for you), you should feel comfortable with them & like you know them pretty well. This agency is reliable, which is important, so I can't just cancel them. I probably won't be able to find another (they don't tend to go to rural areas)
It's very disconcerting having people in your house who aren't friends of yours & who you can tell don't really want to be there. I'm polite to them (I hope!) &I *know* they're here for *me*, but every time I ask for anything I *still* feel like a dictator & a horrible person. They don't make me feel that way, they never have, & they have never once said "we hate coming here" but as I said I can just *tell*.

I don't know, maybe I resent them being in my house or something. Any ideas ??

MA residents free!

Thu, 14 Aug 2008 15:22:27 GMT

From The Boston Globe: Court settlement shifts Medicaid payments from nursing homes to community care

Intellectually, I think that any option to give people a freedom of choice in care is basic justice, and will lead to better care and more cost-effective solutions. Personally, being very familiar with how people with vastly different illnesses and disabilities get shoved into those hellholes, I'm beyond psyched!

Darius Goes West-Featured on YouTube Sept. 5th Please Check out

Wed, 13 Aug 2008 14:24:37 GMT

Hey Everyone,

We made an award-winning, critically-acclaimed documentary about Darius Weems, our friend who has Duchenne muscular dystrophy (DMD). I promise the film will make you laugh, cry, and inspire you to go out and do something. One of my favorite scenes in the documentary is where we play a prank on Darius and we discuss how we do not pity Darius for being in a wheelchair and that is why our friendship is so strong. We treat him like everyone else. We are currently working full-time for Darius Goes West to raise money for DMD research. Our goal is to sell one million DVDs in one year. With $17 from every $20 DVD going straight to researchers and the other $3 going to manufacture more DVDs, we hope to raise $17 million--seventeen million dollars—in the quest for a cure of this terrible disease. Please check out our “Vehicle” clip. Starting on September 5^th we will be featured on YouTube’s homepage, which we hope will give us a great jump start into helping cure this disease. You can help us by spreading the word, forwarding the vehicle to your friends, hosting a screening of the movie, or just buying and enjoying a dvd. I know you won't regret checking this out.

The Vehicle Link

If you would like to contact me my e-mail is jlhharmon@gmail.com and our website is http://www.dariusgoeswest.org

Thanks for your time,

John Harmon