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[cross-posted] Harry Potter and the Curse of Disability [25 Oct 2004|02:36am] aleja This is from the BBC OUCH site (link), so some of you may have seen it already.  I just think it's kind of interesting. Harry Potter and the Curse of Disability by Christina Papamichael Harry Potter is blind. Or was it Hermione who lost her eyesight? Did you hear? Ron Weasley's gone deaf. No, I'm not giving away the plot to those who haven't read The Order of the Phoenix. Anyone reading knows that there are no disabled children in Rowling's books, to date. Yet there are disabled students at Hogwarts. How? Fanfic. ( Read more... ) 1 comment|post comment

[24 Oct 2004|08:59pm] achanchinou [ mood | curious ] Okay, now I'm really curious. Everyone that reads this and uses a wheelchair, what does yours look like? Post a picture or three! :) I'll post pictures of mine later tonight with and without the wings that I wear on it when I'm at a convention. :) P.S. Preferably post pics of YOUR chair, with you in it, as opposed to the chair promo image from the website of the maker. :) (Cross posted to my own LJ) post comment

[cross-posted] A technological victory, for me [24 Oct 2004|05:56pm] aleja [ mood | pleased ] The IntelaVoice Dimmer™ is the neatest thing! Sure, there are cooler things in the world. But this one lets me turn off the torch lamp in my room/the living room without being able to reach it. I'm used to not being able to reach things, it happens all the time. This lamp is something I could probably reach, if the table and my air mattress and other things were arranged differently (which wouldn't be practical in this space). So, when I first moved here, I would try to grab at the stem of the lamp with my reacher, to tip it over towards me and reach the switch. After a couple of tries, near misses, and almost-halogen burns, I knew it wasn't a good thing to keep trying. So every night, I've had to ask someone to turn it off. Once, it stayed on all night and most of a day when the person who can turn it off (an attendant who does not work for me) was out all day when the person they do work for was in the ER. It's been a frustrating little light source. But this living situation has some good points, like the accessibility modification funding we were able to eventually get, to make things a little more wheelchair-friendly. The IntelaVoice Dimmer™ came as part of the package; we actually have 2. But if we didn't, we would actually be able to afford them ourselves. For my roommate, who can't use wall switches, we are hoping to acquire The Wall Switch Dimmer™ with Touch Control, something that is out of our budget. Technology can be a good thing. (swiped from my personal journal, and somewhat cross-posted) 1 comment|post comment

Folding Canes [21 Oct 2004|10:28pm] achanchinou Hello! I'm looking at buying a new cane for the times when I'm walking. It's more and more rare these days, but having a couple of canes around is still a good idea. Anyway, one of the ones I'm looking at is a folding dealie, for ease of travel. Have any of you ever used one of those? I'm attracted to the foldability so I could stash it under the seat or in the glove box, but I'm also hoping that it's sturdy enough that I can safely use it without fear of it folding up while I'm leaning on it or something equally stupid. Input is grand! Thanks! 6 comments|post comment

[cross-posted] Diaz Impact Award - deadline Jan. 2005 (USA) [16 Oct 2004|03:33am] aleja The Disability Funders Network is now accepting nominations for the 3rd Annual William Diaz Impact Award. The Diaz Award honors grantmakers who have a positive impact on the disability community and whose work encourages the foundation community to be more inclusive of disability. Nominations are due by January 7, 2005. The description below gives you the history and purpose of the award and tells you how to nominate a candidate. The nomination form is attached. ( Read more... ) post comment

Crankiness [14 Oct 2004|07:24pm] astarte59 [ mood | cranky ] OK, you know how MS fatigue is so overwhelming sometimes that the simplest tasks seem beyond daunting? Simple paperwork, writing an email, running an errand. Right now, I'm really sleepy (eyes keep closing), but I'm too stressed out by all the stuff I have to get done this weekend to be able to relax. And really, 7 p.m. isn't the ideal time to nap. I wake up a couple hours later feeling disoriented, not sure if it's night or morning, and even though my eyes might stay open, there's this grogginess that makes the whole thing seem kind of pointless. This fatigue thing is why I'm retiring on disability from my job (I'm a college professor), which truly is the best job there is. Except that I'm so tired that it's hard to stay awake in the car back and forth to work and unless I'm actually in the classroom or chatting with a colleague or student, I spend a lot of time at my desk having fantasies about my bed. :-) And counting the hours until I see it again and say, "I love you bed." So one advantage of not working is that I can follow my body's sleep/wake rhythm, which seems to be alternating periods of waking and sleeping of 3-5 hours throughout the 24-hour period. And more time with the fam and maybe even friends. One of the really depressing things about this fatigue thing is that I may have plans to go out and do something fun, but when the actually day arrives, my body is saying, "Bed. Rest. Sleep." OK, now that's enough griping. Thanks for listening! Meanwhile, my kitten Jack is trying to lie down on my mousepad and mouse, which makes it kind of hard to use the puter. Oh, and I paid for a paid account today. I hope I'll feel awake enough later to fool around with the style of my journal. post comment

[12 Oct 2004|11:36pm] karen_walker [ mood | excited ] One of my customers pointed me to this site, and it's GREAT! Accessories for crutches and cane, eating, writing, and bathing devices, tips for travelers, etc. Check out BrokenBeauties.com : ) post comment

Intro and query [09 Oct 2004|05:41pm] astarte59 [ mood | sleepy ] Hi. I just joined this group. I'm 44 (45 next month), and I have Multiple Sclerosis. I was dx'd in January 1998. I'm on Avonex, which I inject once a week, and host of meds for various symptoms. So the main thing that is a problem every minute I'm awake (which are fewer and fewer) is severe fatigue. I'm an English professor, and I reduced my hours to half-time this year, but I'm finding that I'm still exhausted all the time, and every thing I do is a struggle. So I made the decision to retire on disability at the end of this school year. It was a very hard decision. First of all, I got promoted to Full Professor two years ago, and I had expected to be Professor for a couple of decades! Well, that's not the main thing. The main thing is that "professor" is such a huge part of my identify, I enjoy teaching, and I enjoy talking with my colleagues and students. It's just that most of the time, I feel totally awful and exhausted. I was having my weekly shrinkage session, and I said to my shrink, "I just want to know that it's OK" (meaning retiring), and he said, "I think it's not just ok; I think it's *necessary*." One of the things people have told me over the past year or so is that I'm a "fighter." And each time, I end up going off somewhere and crying because I don't *want* to be a fighter. It's just not who I am. I'm more of a plodder--the tortoise rather than the hare. So I have my one and only academic book coming out next month, but it took me 10 years to write. But even plodding has become too much. So I recently sent an email to my friends among my colleagues explaining that I was leaving and why, and I got such nice responses back, I had a total Sally Field moment. :-) I have two kids, a 16 year old daughter and a 13 year old son, and I hardly ever see them b/c I'm asleep so much. I'm hoping that not working will allow me to schedule my naps so I spend *some* time with the kids. I also have a lovely partner, and we have three cats and a chihuahua. OK, enough about me. My query was that I tried to join QueerLadies and when I pressed "Submit" I got a "Server Error" message. Is there another way to request to join the list? post comment

A quick note about my paper... [04 Oct 2004|08:27am] jennylin [ mood | bouncy ] [ music | Collectve Soul - The world I know ] [x-posted to no_pity] I just wanted to let everyone who helped me know that I got an A on my paper! Yay! You can see it posted in it's final form on my personal journal. Thanks! post comment

Christmas ornament exchange [30 Sep 2004|04:24pm] carly7479 [ mood | productive ] This is the second year I'll be hosting a semi-private Christmas ornament exchange on my web site, confoozled.com, and GimpGirl members are one of the groups invited to join. You have the choice of exchanging with anyone who participates, or only with other GimpGirl members. More details on how it works and how to sign up are at the ornament exchange web site. 1 comment|post comment

Editing Help? [30 Sep 2004|12:40pm] jennylin [ mood | creative ] [ music | Jewel - 2 Become 1 ] [x-posted to no_pity] I have written an essay on how the power wheelchair has affected my life that is due tomorrow, October 1, at midnight. I was wondering if anyone who is good at editing, is straightforward and honest, and has time today or tomorrow, would be willing to help me polish it? I have a couple people looking over it, but the more the better. I post this here instead of a writing community because I think the average person gets caught up in the story and misses the technicalities, which is what needs attention. You guys know the story.:) If anyone is interested, reply to this post and let me know how you'd like me to get you the text. Thanks a bunch! 3 comments|post comment

[cross-posted] Oct. 7 Workshop on Parenting and Pregnancy for people with disabilities (NYC) [29 Sep 2004|08:41am] aleja The Institute for Urban Family Health 16 East 16th Street, New York, NY 10007 Presents Pregnancy and Parenting with Disabilities This full-day workshop will focus on pregnancy and parenting issues of people with disabilities/mobility impairments. The workshop will: * Present research findings on the reproductive issues associated with congenital and acquired physical disabilities. * Include new data on breast-feeding and its implications for women with spinal cord dysfunction. * Include a slide show of adaptive baby-care equipment. * Include a panel discussion of compelling personal stories. Judi Rogers, who received the Robert Wood Johnson Community Health Leadership Award in 2002 for her work on these issues, and who just completed her 2nd edition of Mother to Be: A Guide to Pregnancy and Birth for Women with Disabilities, will be a presenter. Thursday, October 7, 2004 9:00 AM to 5:00 PM To register for this free workshop, please call: Evelyn at (212) 633-0800 ext. 232. Breakfast will be served at 8:30 AM, lunch is also included. post comment

(cross-posted) Exposed, by Helen Leung [28 Sep 2004|06:55pm] aleja [ mood | curious ] I came across this autobiography, written by someone I went to high school [and shared a yellow schoolbus] with. We never spoke much, but I always knew she had something to say. From the publisher's website (it looks like a self-publishing service)-- Description As a young child and teenager growing up with Dermatomyositis, Helen discovers how indubitably frustrating it can be at times to find acceptance among her peers and the people she encounters on a daily basis. We experience firsthand just how uncomfortable the human stare can be, and what one would do in desperation for that “miracle cure.” Told candidly and at times humorously, this is a story of a young girl’s determined odyssey into young adulthood. Link to an excerpt: here Or, you can ( Read more... ) I decided to touch base with Helen, since she's done something I'd like to do one day (the whole book-writing thing). And incidentally, I remembered that while I haven't written a book yet, I was once in one... *groan* See the Teenage Singer in a Wheelchair section of Seen and Heard: Teenagers Talk About Their Lives by Mary Motley Kalergis (published ca. 1998) post comment

[19 Sep 2004|02:17pm] myradar Hey all. I have a question. I'm having increasing difficulty with reading. I have a seizure disorder that affects my brain's ability to process the information it gets from my senses effectively. So even though my brain is getting the information, it seems to have a harder time interpreting it into something usable than most people. Hope that makes sense. :) Sometimes if I can switch or combine input forms, it helps. For instance, earlier this year (I think) I got signed up for the NLS and so now I get books on tape to listen to, and that's a big help, especially if I can get the book in print from the local library to read along with the tape. But I do a lot of stuff on the computer, and I really have a tough time sometimes with reading files, webpages, etc. I know a lot of people use... I think they're called screen readers? Not sure. But something that reads the text back to you out loud. Those of you that have experience with these, can you maybe tell me a little bit about them and some different options? I'd like to try something like this and see if it would help. Summer 6 comments|post comment

I'm new here... [17 Sep 2004|09:57pm] musicnut2004 I'm new here. My name is Erin and I have cerebral palsy and would love to meet anyone else with CP...talk to you guys later! Erin post comment

[14 Sep 2004|07:46pm] karen_walker An article about a friend of mine in the Paralympics in Athens, playing Sitting Volleyball post comment

[13 Sep 2004|05:05pm] myradar Hi all. I applied for SSDI (hope I've got the initials right, there.) and was denied, and am appealing. So I have a hearing later this month. I was wondering whether anyone else had been through this and knew how long it was before you knew what the judge at the hearing had decided? Also, anything you can tell me about what the hearing was like would be helpful, if for no other purpose than soothing my nerves. 2 comments|post comment

[cross-posted] The Lessons of Classroom 506 (NY Times article) [12 Sep 2004|08:50am] aleja [ mood | curious ] September 12, 2004 The Lessons of Classroom 506 By LISA BELKIN I. First Impressions It was the first day of school last year, Sept. 8, 2003. The kindergartners were arriving in batches at Classroom 506 at the Manhattan School for Children, on 93rd Street between Amsterdam and Columbus Avenues. The parents of these 5-year-olds said they felt lucky to be taking their children to M.S.C. that morning, lucky to have won the scramble for admission to this sought-after institution -- a public school with particular cachet among artistic, educated Upper West Side families who can't or won't pay for private education. Only half the class was there that morning; the other students would come later in the day, the better to ease the transition to ''big-kid school.'' Taylor, an African-American girl, was coloring a picture. Evan, one of two blond-haired boys, was playing with blocks. Thomas, one of two motor-impaired, nonverbal children, was in a custom-built wheelchair, his blue eyes wide, his gentle face animated, watching from on high as the others drew and chattered and explored. ( Read more... ) post comment

[cross-posted] Infinity Dance Theater 10/7/04 - 10/10/04 (New York City) [09 Sep 2004|06:50pm] aleja INFINITY DANCE THEATER Kitty Lunn, Artistic Director "Dancers with and without disabilities - expanding the boundaries of dance and and changing perceptions of what a dancer is" Premieres and repertory by Peter Pucci, Kitty Lunn, Dario Vaccaro, and Gabriela Poler Thursday - Sunday, October 7 - 10 at 8 pm Joyce SoHo, 155 Mercer Street between Houston and Prince Streets Tickets: $20 general admission $12 for students/seniors/persons with disabilities Free for personal care attendants of persons with disabilities Reservations (recommended): 212-334-7479 Questions: info@infinitydance.com post comment

2003 Census Data for Persons with Disabilities (U.S.) [03 Sep 2004|04:21am] aleja 2003 Census Data for Persons with Disabilities  9/04 The United States Census Bureau, in its recently released 2003 American Community Survey (ACS) Data Profile, breaks down "Disability Status of the Civilian Noninstitutionalized Population" for every state in the Nation by State, city, county and even census tract for persons 5 years and older. This information is very helpful in local organizing and should be used to convince local/state officials of the need for increased accessible housing, as well as for voting accessibility, employment, transportation services, SSI/SSDI, and other issues. It should be used to ask HUD to increase the percentage of accessible units above the existing 5%. The data is available on the Census's webpage - www.census.gov, click on American Community Survey, click on 2003 Data Profile, click on you specific state, county and census tract. For the entire United States in 2003: Population 5 -20 years was 63.5 m of whom 4.1 m (6.3 %) had a disability. Population 21-64 years 165.2 m of whom 19.9 m (12.0 %) had a disability. Population 65 and over 33.9 m of whom 13.5 m (39.9%) had a disability. Total population 5 and over was 262.6 m of whom 37.5m (14.3%) had a disability. Even though the 2003 ACS data did not break down disabilities by either type or condition(this data will be released after September), the 2000 Census did and found 3.6% of the population had a sensory disability involving sight or he aring, 8.2 % with a condition limiting basic physical activities, e.g., walking, climbing stairs, reaching, lifting or carrying, and other 2.6% had difficulty in dressing, bathing or getting around inside the home and 8.6% had difficulty going outside the home to shop or visit a doctor. The 2003 ACS data did provide an employment breakdown: whereas 77.5 % of the 21 - 64 population without a disability were employed, only 37.8 % of the disabled were employed. Steve Gold, The Disability Odyssey continues Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. To contact Steve Gold directly, write to stevegoldada@cs.com post comment

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