Until the dolphin flies and parrots live at sea... [entries|archive|friends|userinfo]
Alejandra (Lady Baroness of Xternetsa)

[ website | superaleja.org ]
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NYC Council Hearing: June 17, 2009 [Jun. 17th, 2009|05:55 pm]
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Alejandra Ospina provides testimony on behalf of Nick Dupree, in support of the Community Choice Act

NYC Council Hearing on Aging; Mental Health, Mental Retardation, Alcoholism, Drug Abuse & Disability Services

City Hall Council Chambers, Manhattan

Part of a set: NYC Council Hearing: June 17, 2009


Update: You can listen to the radio show I participated in the following day, streamed here.


My testimony: )

Nick's testimony: )
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If Facebook says it... [Jun. 16th, 2009|04:24 pm]
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It must be true:


 Facebook update reads: Alejandra Ospina  will have double testimony to present to the NYC Council in support of the Community Choice Act on Wednesday morning, and will speak to the Largest Minority Radio Show (http://www.largestminority.org/) on WBAI on Thursday.

Life is nothing if not interesting, these days.

If you get to listen on Thursday, let me know.

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Catching up with the monster [May. 30th, 2009|03:32 pm]
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Catching up with the monster
Originally uploaded by superaleja.
Just because I follow the blog, is no excuse not to finish reading Schuyler's Monster, which I'm glad I'm finally able to do. Because I want to be like her when I grow up. And her dad is okay, too.
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Fourth "Nick's Crusade" Video Blog - May 7, 2009 [May. 8th, 2009|03:32 am]
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Transcription (as captioned in the video):

Read more... )

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Nick's Crusade - Guest Video Blog - May 3, 2009 [May. 3rd, 2009|08:49 pm]
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So I did a guest "vlog" for Nick's blog today. I don't think I'm a vlogger. Transcription is below...


Read more... )
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Disablism sure isn't disabled at all [May. 1st, 2009|01:21 pm]
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[Current Mood | pensive]


Every person with a disability has encountered or experienced disablism/ablism.  Subtle and not-so-subtle discrimination based on the fact that they are different, that they are perceived as less because something about their body is different from the norm.

As a lifelong member of the club, a visibly disabled person with my visibly disabled person wheelchair (and my other, less visible disabilities), I like to think I've done a good job straddling the different worlds. I like to think that I have a solid presence in my local disability community, appreciation of the issues that affect people with disabilities, and that in my own ways, I do what I can to make a difference and help others (particularly when it comes to my involvement with things like the GimpGirl Community and other things online). I feel like I can also exist comfortably in world where people  don't necessarily know or talk about "gimpy" stuff...  I try to mix well with all kinds of people, at all levels of existence. I think I do a good job.

Though my life's path has wandered a lot (not to mention my own self-image),  I know that generally I am regarded as intelligent, useful, forward thinking, with potential for lots of things. I'm okay with that potential.

One of the things that's important in my life right now is my partner. He is a man with a disability, an advocate, a person currently stuck in an institutional setting, waiting to be able to live in the community with proper supports. The fact that he has to fight for it (along with thousands, millions of others) illustrates just how inherently disablist/ablist our societies are. Though there are people who know and believe fervently that it shouldn't be this way, and  in the U.S., potential legislation like the Community Choice Act that could make a real difference, it will take something more to shift the way things work. The way we are perceived on a grander scale.

 With my partner in the hospital for the last seven months, we've had quite a roller coaster ride. Right now, I'm his primary support system (though not for lack of trying to expand the circle), in part because he is originally not from this city. Once he is home where he belongs, I know that that will change. But now, and in the future, and always, disablism will make it so that my partner, with his sharp mind and wit, but impaired communication (and non-optional ventilator accessories), will almost never be taken seriously by someone the first time around. And I will almost never be taken seriously as his partner, as a caregiver, as someone who can do something useful, because my legs don't work either. 

 We'll always have some version of our recent experience with a nursing administrator at the hospital, who said, during an emergency situation, that my continued presence until the situation was resolved  wouldn't really make a difference anyway, since I couldn't do X or Y or Z tasks that nurses would do. Never mind that convoluted hospital policies make it so I end up doing a lot of the things nurses won't do anyway...

We will march on. We will build our lives together, we will continue our lives as individuals, affected, shaped, and molded by our disabilities, but not defined by them. We will make our mark on the world together, separately, and with others, even if much the world chooses to interpret those marks through the misinformed screen of "ability", which in the end, only means what you make of it.
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Nick's Crusade & the Community Choice Act [Apr. 23rd, 2009|03:47 pm]
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Transcription (as captioned):

Hello, and welcome to Nick's Crusade blog. This is a video blog of day 236 here in the hospital. I'm here in the hospital because I'm waiting for community services, and the [Medicaid] waiver that I'm on just seems to add another layer of complexity and bureaucracy, and makes things take longer...

And it's very frustrating to be stuck in a hospital when the only reason is, you just need services in the community. That's why it's so important that we pass the Community Choice Act as soon as possible.

I hope that soon I'll get out in the community, I'll get into my apartment with my partner, and that we can continue to advocate for the CCA, and for housing. There are so many people here that don't need to be here, that are only here because they don't have housing.

My voice is a little rough with a new trach that I got in August, here in this hospital, but I hope that soon, my normal voice, (which is higher pitched, and a little Southern) will be back.

Keep reading the blog for more updates.

Thank you, and I love you all.

Nick's Crusade
nickscrusade.org


This video is also on YouTube: youtube.com/watch?v=p2SUnllCSEk, which might be more accessible to some.

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Next @ the disTHIS! Film Series: HEAVY LOAD: A FILM ABOUT HAPPINESS (Wed, June 18) [Jun. 11th, 2008|04:13 pm]
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Next @ the disTHIS! Film Series: disability through a whole new lens

HEAVY LOAD flyer image

HEAVY LOAD: A FILM ABOUT HAPPINESS
Followed by Q & A the band and gig with 4 Wheel City @ Arlene's Grocery!
SPECIAL DATE: Wednesday, June 18th!
Link: http://www.disthis.org/June-18-2008.htm

Join disTHIS! for the NY premiere of HEAVY LOAD: A FILM ABOUT HAPPINESS, a feature documentary about the UK’s only 'mixed-ability' punk band prior to the movies premiere on the Independent Film Channel (IFC), June 23rd!  IFC and other  media outlets will be there to document the film screening and post-screening concert at Arlene's Grocery for broadcast!
 
HEAVY LOAD: A FILM ABOUT HAPPINESS opened to rave reviews last March at the SXSW Festival in Austin, TX. Rural England’s answer to the Ramones, the band includes musicians with and without developmental disabilities. True to their punk roots, the band was recently considered “too hardcore for BBC Radio Four” (the English equivalent of NPR) when a segment on the band was axed from a story about disability and self-determination.
 
The movie chronicles a year in the life of the band as they hit the road and attempt to navigate a combustible flux of ego, ambition, and fantasy that fuels any emerging act on tour.
 
The band will also be bringing their STAY UP LATE campaign to the United States. STAY UP LATE fights for disabled folks who want to go out to clubs, etc. but often end up going home early because their support workers don't want to work late. Fight for your right to party!  Be sure to catch the band's first gig in NYC. This will be a rare opportunity to attend one of their energetic, and sometimes chaotic, live performances stateside - which has earned them a cult following in the UK!
 
SPECIAL DATE:  Wednesday, June 18th
WHERE: DCTV, 3rd Floor Screening Room
87 Lafayette Street (By Subway: 6, N, R, Q, W, J, M, Z to Canal Street; go two blocks south) between Walker & White.
START TIME: Doors open 5:30pm. Screening begins promptly @ 6pm!
DONATION: A bargain @ $5!!!
DON’T MISS OUT! To RSVP and reserve YOUR seat, call: 212.284.4160 or email: disthis@dnnyc.net
 
“Don’t be misled by the title. HEAVY LOAD: A FILM ABOUT HAPPINESS plays like Metallica’s SOME KIND OF MONSTER meets HOW’S YOUR NEWS,” says disTHIS! curator, Lawrence Carter-Long. “It’s everything you want in a band movie with a disability twist. Not to be missed!”

disTHIS! movies, talkback sessions and related events are open to the public. $5 donation. There will be a discussion with the band and film director following the screening! HEAVY LOAD: A FILM ABOUT HAPPINESS is captioned. ASL interpretation available upon request. Space is wheelchair accessible. There is a cash bar for drinks, but space is limited to the first 65 people!  Presented in association with the Realabilities NY Disability Film Festival.
 
After the screening, STAY UP LATE with HEAVY LOAD as the guys make their NYC concert debut @ Arlene’s Grocery (95 Stanton Street) with local krip-hop favorites FOUR WHEEL CITY!!!  Concert tickets only $8! Get directions here:
http://www.hopstop.com/route?zip2=10002&address2=95+STANTON+ST&mode=s

About us: The disTHIS! Film Series, a program of the Disabilities Network of NYC in association with DCTV, is a showcase of festival quality independent and international short, documentary and feature films with disability themes beyond clichés. disTHIS! movies are always provocative; never what you’d expect. No handkerchief necessary, no heroism required. This is disability through a whole new lens!
 
The disTHIS! Film Series is made possible by the generous support of The Christopher & Dana Reeve Foundation, the Screen Actors Guild, the NYU Community Fund, the United Way and our members.
 
For more information & to sign up for exclusive email updates, go to: http://disthis.org

Heavy load profiles image
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Nick's Crusade [Jun. 9th, 2008|02:45 pm]
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Nick's Crusade
Originally uploaded by superaleja.
In 2003, Nick Dupree made a major impact with his campaign to change Medicaid in his home state of Alabama (U.S.), so that he and others like him could continue living in the community and out of a nursing home, dubbed "Nick's Crusade."

Though he has worked hard, Nick realizes that he needs to find a new place to live safely and independently so that he can continue to work towards his goals as an individual and an activist for change in the disability community.

Learn more about his new campaign at Nick's Crusade : Project Freedom. Your thoughts and ideas are welcomed!

(Photo credit: Kii Sato, Mobile Register)
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GimpGirl Presentation @ Dreams Fair on Second Life [Apr. 20th, 2008|11:32 am]
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GimpGirl Presentation
Originally uploaded by complicitytheory.
Here is a picture of me, in front of our giant TV screen, as [info]jennylin and I talk about [info]gimpgirl (AKA GimpGirl Community), at the Third Annual Dreams Community Fair in Second Life.

"The Third Annual Dreams Community Fair highlights health/support, educational, and artistic groups in SL. There are over 60 informational booths and close to 80 events scheduled by those groups and others."


More photos in the GimpGirl Community Flickr group.
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Online Avatar & Identity Presentation (3/30) [Mar. 14th, 2008|06:03 pm]
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f you're interested in Second Life, IRC, and/or issues of identity (with and without disability), you are invited to an online seminar I am co-hosting (with [info]jennylin, but not presenting) entitled:

"Avatars, Identity, and the Expression of Disability" on Sunday, March 30th from 12:00 - 1:30 PM SLT/Pacific Time (3:00 PM Eastern Time)
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As posted to [info]gimpgirl: Topic of the month: What does GimpGirl mean to you? [Feb. 17th, 2008|11:43 pm]
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[Current Mood | calm]

As posted to [info]gimpgirl and [info]no_pity (in edited form):

GimpGirl celebrates its 10th Anniversary!


Started in February 1998, the GimpGirl Community has been a long-time resource for women with disabilities.  We are currently gearing up to re-launch our new website, which has been on a bit of a hiatus. We're also becoming active on Facebook, as well as MySpace and the virtual community of Second Life. (See our website for more details, including how to get to our Second Life Open House, happening TODAY at 4:00 PM SLT/Pacific)

Our awesome LiveJournal community has been our mainstay for a long time, and we'd like to hear your thoughts as we move into our next decade...

TOPIC OF THE MONTH: What does being a "gimp girl" (AKA woman with a disability) mean to you?

For as long as the GimpGirl Community has been around, and long before that, people with disabilities, and especially women, have thought, written and talked about their identities -- how having a disability and identifying as a woman shapes (or doesn't shape) their lives.

What does it mean to be a GimpGirl for you? GimpGirl is a phrase used by our community, and of course it's not one that everyone uses. If you prefer a different phrase, what is it, and why?

EDIT: 
Look under the cut to find out more about today's excellent GimpGirl open house event on Second Life!

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Facebook says... [Jan. 5th, 2008|01:24 pm]
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[Current Mood | indifferent]

You have a How are you disabled invitation.

__________________ sent an invitation using How are you disabled?:
______________ wants to share the "How are you disabled?" quiz with you. How disabled are you?



Um... no.

I'm for the disability experience being a part of social networking, but that just rubs me the wrong way.

Should it?
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Next at the disTHIS! Film Series -- Wednesday December 5th! [Dec. 2nd, 2007|01:37 am]
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Next at the disTHIS! Film Series -- Wednesday December 5th!
The Keys To The House (Le Chiavi di Casa)

Favoring subtlety over cheap sentimentality, Italian director Gianni Amelio tackles difficult material with a sublime touch, and offers a powerful cinematic treatise on mental illness, physical disability and child abandonment in the award-winning, THE KEYS TO THE HOUSE.

Gianni (Kim Rossi Stuart) plays a father who abandoned his mentally and physically disabled son, Paolo (Andrea Rossi), at birth. Paolo’s mother died during childbirth, so an aunt and uncle raised him. Fifteen years later, a guilt-stricken Gianni gets back in touch with the son he’s never met, offering to accompany him on a medical tip to specialist clinic for disabled children in Berlin. Paolo cautiously agrees, but the reunion is anything but easy. At the clinic, Gianni meets the mother of another disabled child and the interaction between the parents and children provides a thought provoking, thoroughly unsentimental dissection of the effects of disability on every member of the family.

KEYS TO THE HOUSE triumphs in many ways, not the least of which by giving rarely afforded screen time to two real disabled actors. Andrea Rossi is the disabled actor who plays Paolo. The other child also has c.p. and is played by the protagonist of the book on which the film is based, Born Twice by Giuseppe Pontiggia.

Throughout the film, director Amelio handles potentially touchy subject matter with rare dignity and respect, emotionally honest but never condescending, and ultimately offers a cogent statement that lingers long after the final credits roll.
Kenneth Turan of the Los Angeles Times wrote:
"Takes a story that could be turned into the most florid kind of tear-jerker and ... tells it with an exactness and restraint that makes it powerfully effective."

Tom Dawson of the BBC reported:
"Intelligently steers clear of lachrymose speeches, swelling orchestral music, and cheap redemption."

V.A. Musetto of the NY Post concluded:
"Deals with the sensitive subject in a mature manner, refusing to descend into Hollywood-style schmaltz."

Awards & Recognitions
-- Best Foreign Film, Turia Awards (2006)
-- Best Director, Italian Nat’l Syndicate of Film Journalists (2005)
-- Best Film in 2 categories, Venice Film Awards (2004)
Keys To The House (Le Chiavi di Casa)
Italy, 2004

Running Time: 1:11
Language: Native Italian with English Subtitles
Director: Gianni Amelio
When: Wednesday, December 5th
Where: DCTV, 3rd Floor Screening Room. 87 Lafayette Street (By Subway: 6, N, R, Q, W, J, M, Z to Canal Street; go two blocks south) between Walker & White.
Time: 6:30 to 10:00 pm. Screening starts @ 7pm
Suggested Donation: $5
disTHIS! movies, talkback sessions and related events are open to the public. $5 suggested donation. This film is presented in native Italian with English subtitles. ASL interpretation available upon request. Space is wheelchair accessible. Snacks are provided and there is a cash bar for drinks, but space is limited to the first 65 people! Recent articles in the Tribeca Trib, New York Nonprofit Press and the NY Times -- and YOUR support -- have filled screenings to capacity. DON’T MISS OUT! Call 212.251.4092 to reserve YOUR seat or email: disthis@dnnyc.net

The disTHIS! Film Series, a project of the Disabilities Network of NYC in association with DCTV, is a monthly showcase of festival quality independent and international short, documentary and feature films with disability themes audiences are unlikely to see elsewhere. disTHIS! movies are always provocative; never quite what you’d expect. No handkerchief necessary, no heroism required. This is disability through a whole new lens. disTHIS! is made possible the generous support of The Christopher & Dana Reeve Foundation, members of the Disabilites Network of NYC and our audiences.
For more information and to sign up for regular email updates, please go to:
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[cross-posted] EARN Recruiting Jobseekers with Disabilities (U.S.) [Nov. 30th, 2007|11:35 am]
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EARN Recruiting Jobseekers with Disabilities
for
Federal Government Careers with Equal Employment Opportunity Commission


  
EARN, a nationwide free service of U.S. Department of Labor’s Office of Disability Employment Policy, is here to connect employers with workforce talent and disability employment resources.    

Jobs Available In:

       




To view full job descriptions and search other jobs posted: jobsource.earnworks.com 



EARN Ph:    1-866-327-6669 (v/tty)
Email:    earn@earnworks.com
Website:    www.earnworks.com
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Travel and people with disabilities (cross-posted) [Nov. 20th, 2007|03:23 pm]
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[Current Mood | curious]

It's a topic I often wonder about.  And I know other people are thinking about it as well, given the number of sites, blogs, and other activity that has cropped up online around accessible travel.

Specifically (as a woman in fairly decent health who uses a motorized wheelchair and lives in the U.S.), my interest in travel was rekindled recently when I came across the website of a group called Wilderness Inquiry.  Paragraphs like this one caught my eye:

Our trips are integrated, meaning that each group typically includes people who have a disability and those who do not. What brings them together is their interest in doing a wilderness adventure. We do whatever it takes to make our trips accessible, but disability is not the overt focus. We just want to get out there and enjoy the wilderness together.

Actually, if their trips really work that way, it kind of blows my mind.  And they even have a financial aid program.  So now I am definitely interested in exploring this as a possibility.

I have traveled a bit in the last few years, within the country for less adventurous reasons, and internationally (to the U.K.) on an exchange sponsored by a disability-oriented organization called Mobility International USA.  But I don't think I've found a travel situation that seemed just the right mix of adventure and inclusion (and affordability) yet, and I'd like to try.

So I wonder about other people's travel experiences... with either of the groups mentioned, with other groups, or independently.  Within your country, or internationally.  Or if you haven't traveled, what you'd like to be able to experience...

I know I'm not the only one with an itch to travel.
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Next @ disTHIS! Dance Inferno - Wednesday, Nov 7th [Nov. 1st, 2007|01:21 am]
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Image: Phoenix DanceImage: Outside InImage: Bruce


When:

Wednesday, November 7
Time:
6:30 to 9pm.
Screening starts promptly at 7pm.
Where:
DCTV @ The Firehouse
3rd Floor Screening Room
87 Lafayette St (between Walker & White)
Closest subway stops: N/Q/R/W, J/M/Z, or 6 to Canal Street. DCTV is located two blocks South of Canal Street in NYC.
VIEW MAP
Cost:
$5 Suggested Donation

Join disTHIS! Wednesday, November 7th as we showcase a series of acclaimed short films that remind us "dis can dance." Culturally speaking, disability is thought to be many things ... tragic to some, heroic by others, inspirational by almost every reporter to ever take up a pen, but do the words celebratory, joyous, funky, sexy or exciting come to mind? In short, has "Gimp Got Groove?" You bet!

Full info:  http://disthis.org/November2007.htm
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[cross-posted] Music Within - In Theaters October 26 (U.S.) [Oct. 24th, 2007|10:01 pm]
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Music Within traces the true story of Richard Pimentel, a crusader for human rights who was instrumental in getting the Americans with Disabilities Act passed into law. When he didn’t make a college debate team, Richard (played by Ron Livingston) headed to Vietnam for a tour of duty. There, a bomb blast caused him to lose his hearing. Learning to read lips, Richard returned to college and met and became close friends with Art Honneyman (played by Michael Sheen), an intelligent -- and funny -- man with cerebral palsy. After witnessing how Art was treated in public, and after seeing how difficult it was for his fellow Vietnam Vets to get help with their problems, Pimentel decided to dedicate his life to raising awareness about the needs of people with disabilities.

Official Site (uses Flash, not fully accessible):
http://www.musicwithinmovie.com/

The official site says: Call 800-445-4641 or email jpapier@mgm.com for more information on how to buy block tickets or buy out a screening for your organization, family, and friends.
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It's Telethon time... [Sep. 3rd, 2007|01:14 pm]
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[Current Mood | thoughtful]

Kay at The Gimp Parade says:

Sigh. It's that time of year again. Miss Crip Chick and Kara Sheridan are leading the online protest against this tiresome Weekend of Celebrating Pity through the Jerry Lewis MDA telethon by asking bloggers to write about charity, pity, the medical model of disability, the tyranny of the belief that we all need a cure, and the asshattery of Jerry Lewis. That's for tomorrow, Monday, the United States' Labor Day.


Miss Crip Chick explains:

Jerry Lewis is the host of the Muscular Dystrophy Association’s Annual Telethon, a telethon that occurs every Labor Day to raise funds for cures by using disabled people as posterchildren. Disabled people protest the telethon because of its outdated, negative portrayal of disabilities. These images that the telethon promotes sticks in people’s minds and continually serve as a barrier for disabled people. Disability is not the problem, but rather the attitudes and barriers that society places on us.

What can we do? Protest. Write a Letter to the Editor. Tell people about the charity, medical, and social model of disability. Blog. Kara and I, along with the Disability Activist Collective (website coming soon) are organizing a campaign against the telethon and the charity model of disability. We need bloggers (not only disability bloggers but all! feminist, queer, woc, environmentalist, activists, great time to build alliances) who will agree to write about this! The campaign will work much like a blog carnival and will be heavily publicized in listservs and other sources of media.


And so is born:

Protest Pity

Welcome to the first annual Anti-Telethon Blogswarm (online gathering of bloggers to bring attention to an important issue). By stopping by, you’ve joined our protest against pity. We are excited to share with you the thoughts, feelings, and words of power expressed in the links below. This unique way to voice opposition will allow our chants to be heard across the world and we invite you to join us in solidarity! If you didn?t have time to write, didn’t know what to say, or weren’t sure how you felt before today, there are still opportunities to act. Post a comment, forward our link, write a newspaper, tell your friends, or educate someone in the community about why your life isn’t defined by pity. Thank-you so much for joining us and LEAD ON!


I am someone who agrees with this sentiment 1000%.  However, the opinions linked to and shared on that site are worth viewing by anyone who is against pity, regardless of how you feel about the telethon.  Many thanks to everyone involved in putting it all together for all the world to see and discuss.

 

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[cross-posted] Founder of Disaboom on NYC radio, 8/26/07 [Aug. 25th, 2007|03:59 pm]
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Does anyone have experience with or thoughts on this social networking community for people with disabilities called Disaboom?


Disaboom on CD101.9 Sunday

Disaboom CEO J.W. Roth to Be Featured Guest on New York's CD101.9's Dialogue With Host Mark Farrell Sunday, August 26th

Aug 24, 2007 06:30 ET

DENVER, CO--(Marketwire - August 24, 2007) - Disaboom, Inc. (OTCBB: DSBO), which is developing the first online community for people living with or directly affected by disabilities or functional limitations, today announced that CEO J.W. Roth will be a featured guest on New York City's CD101.9 Dialogue radio talk show with host Mark Farrell on Sunday, August 26, 2007 at 6:00am ET. An audio archive of the segment will be available at: http://aboutus.disaboom.com/Press-Room/Media-Room.aspx.

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"Dance Me To My Song" @ disTHIS! (Wed. Sept. 5th) [Aug. 13th, 2007|02:49 pm]
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Dance Me To My Song



Australia, 1998
Running Time:
1:45
Rating:
Nudity, sex, mature themes
Language: English
Director: Rolf de Heer
Suggested Donation: $5

When: Wednesday, September 5
Time: 6:30 to 10pm.
Screening starts promptly at 7pm.
Where:
DCTV @ The Firehouse
3rd Floor Screening Room
87 Lafayette St (between Walker & White)
Closest subway stops: N/Q/R/W, J/M/Z, or 6 to Canal Street. DCTV is located two blocks South of Canal Street in NYC.
VIEW MAP

Cost:
$5 Suggested Donation

Read more... )

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On Ruben Navarro [Aug. 10th, 2007|10:15 pm]
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[Current Mood | nauseated]

Via The Gimp Parade:

If you read just one thing this week about disability in America, read this.

I briefly mentioned Navarro's case here but the above link has important and better detail than the news story I linked to.
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Wed., 7/18: disTHIS! Film Series - "Josee, The Tiger & The Fish" [Jul. 16th, 2007|10:53 pm]
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Last chance to RSVP for the Wednesday, July 18th screening of the award-winning "Josee, The Tiger & The Fish" at the disTHIS! Film Series! Details below. Space is limited to 65 audience members dues to room renovations and we're almost at capacity - don't miss out! "Josee" has been compared to the cult classic “Harold & Maude” and been called a Japanese “Amelie.”

Details here: )
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Jen & I - "Intimate Encounters" reception [Jul. 11th, 2007|02:41 pm]
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My friend Jen and I at the reception for the opening of the "Intimate Encounters" disability & sexuality exhibit at the Museum of Sex in Manhattan.

Read a review from Wheelchair Dancer (whose shoes I dig); visit the photographer's website (not very accessible) which shows many of the photos.

(Photo by Elizabeth Mariko Murray, MoSEX Collections Manager)
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Because it's often said that no one talks about adults and CP [May. 21st, 2007|12:15 am]
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[Current Mood | curious]

Do Adults with Cerebral Palsy Face Special Health Challenges?
 


[source: National Institute of Neurological Disorders and Stroke (NINDS)]


Cerebral palsy is, of course, a broad umbrella of disability, and not all "challenges" apply to all CPers (nor does all the information on the source page, however extensive, encompass all possibilities and points of view, I'm sure).  But it's interesting to see some validation of things I have seen and heard in others and myself... to know I'm not nuts, really.

I also don't seem to have a "primary caregiver".  Such is life!
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[cross-posted] Conference - Women with Disabilities: Claiming Our Bodies (NYC, 4/30/07) [Apr. 18th, 2007|04:49 pm]
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Clemyjontri Park [Mar. 10th, 2007|05:08 pm]
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[Current Mood | touched]


Clemyjontri Park
Originally uploaded by mj*laflaca.
The photographer says:

This has to be the biggest playground I've ever seen. It was hard to capture it all in one picture. This park opened today. It's very unique because the entire playground is accessible to children with physical disabilities. There is also a wheelchair-accessible carousel in the middle.

Mrs. Adele Leibowitz donated her home and the land around it for a park on the condition that part of the land be used to build an accessible playground so that children of all abilities could play together. The unique name of the park is composed of letters from the names of the four Leibowitz children.

www.clemypark.com



I don't care how old I am, the next time I'm in northern Virginia again, I need to visit this park.
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[cross-posted] "Miss Ability" beauty pageant coming to UK and US... offensive? [Dec. 27th, 2006|06:15 pm]
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[Current Mood | cynical]

I didn't expect to hear about the latest news in disability related TV from a celebrity gossip site, but there it was... famous/infamous American blogger Perez Hilton filed this under the category, "If You Are Easily Offended..."

Filed Under: If You Are....

Then do not CLICK HERE!

a0,,378380,00.jpg

This is exploitation television at its best!!!

The Brit's are adapting a Dutch reality TV show called Miss Ability, which has become the surprise hit of 2006 in the Netherlands

The show is a beauty contest complete with a swimsuit round. But all the contestants in the latest reality format to sweep ratings-hungry broadcasters have a disability. Contestants must display a "handicap visible to the eye."

Twelve women, including amputees and wheelchair-bound contestants, parade in nightgowns and bathing suits.

They star in short films demonstrating how they have overcome severe disabilities before submitting to a viewer vote.

Could this show fly in America?

We'll see!

A production company has already bought the rights to pitch it and produce it here!

Posted by on December 27, 2006 10:43 AM | Permalink


Now, I'm not a fan of pageants in general.  But it's good to know that Perez thinks women with disabilities are just ripe for exploiting, and that he can't wait to watch!
 
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Unbelievable [Nov. 5th, 2006|09:47 pm]
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[Current Mood | indescribable]

Someone posted about the following article in [info]no_pity

Should severely disabled kids be kept small?

6-year-old given hormones to stunt growth so parents can care for her


Some part of me wants to be cynical and unsurprised.  But I just can't wrap my brain around the fact that this has actually happened, that it has actually been deemed ethical, when it is in fact horrifying and I can't imagine how to rationalize it away.  Sure, I am a person with a disability and therefore will have a certain train of thought and emotional investment in an issue like this...

But this is wrong.  Wrong is wrong.  Can someone please explain to me how this is not wrong?

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FREE Theatre Tickets THIS Weekend: Krankenhaus Blues! [Oct. 7th, 2006|12:47 am]
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“Forman’s astonishingly fresh script...makes ‘Krankenhaus Blues’ more than a theatrical gem. It’s also a theatrical rarity - provocative theatre that very unselfconsciously challenges its audience members to reconsider their perceptions while it simultaneously entertains them.” -- Amy Krivohlavek, Off Off Broadway Online Journal

Read more... )

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Transit accessibility in New York City [Nov. 1st, 2005|11:10 am]
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Transit accessibility for people with disabilities/wheelchair users is very inconsistent in New York City, something which surprises many people who aren't from the area, or who don't need accessible services.  Sure, you can ride [almost] any bus (for hours and hours), but you can't catch a cab (okay, we do have 3 vehicles now for the whole 5 boroughs, and they are always booked and over-priced), and the subway can be a life-threatening proposition.

When I talk to an "able-bodied" New Yorker, or an out of towner, and mention that actually, no, I can't easily take a taxi (compared with, London, or San Francisco) and the subway is a no-no for most wheelchair users (unlike, say, Washington DC), and that some sidewalks are just insanely un-passable,  and paratransit is a joke, I get a wide-eyed, "Really?"  It's true that we are leaps and bounds over some places in the world, but this is New York City... we should be at the top.

I've found myself having this conversation a lot lately, which is why I felt compelled to post about it.  Usually I start to go into a vague version of the statistics as I know them, and the shock and outrage increase.  Most of the time I wish I had a copy of this article handy, which is a couple of years old (a few related links are broken, and the first subject of the article has since passed away) but still relevant and does a good job of explaining the broad issues around the lack of accessibility in NYC transit (if you're interested):

Transportation as Civil Rights for the Disabled (Gotham Gazette. April 21, 2003)

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[cross-posted] Can Disability Be Funny? Oct. 15th @ 3pm (New York City) [Oct. 13th, 2005|01:39 pm]
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I think I'll be able to go to this:

Join Lawrence Carter-Long, the Disabilities Network of NYC and the Visible Theatre for a screening of James O'Leary's "I'm Spazticus" followed by a discussion on humor and disability as a part of the Visible Theatre's excellent October Series at the Blue Heron Arts Center, 123 East 24th Street on Saturday, October 15 @ 3pm.

Read more... )
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FAULT DETECTED [Oct. 10th, 2005|04:52 pm]
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[Current Mood | aggravated]

EDIT: I now have gigantic, but functional, loaner wheelchair. Pretty lucky, really. Now, if only the biblically torrential rain would let up for a bit so I can actually use it to go somewhere...

My wheelchair said its battery was charged when I started out today. Good enough.

I turned it off at the bus stop to put on my jacket.

Once turned on, it would not move.

Was pushed home 2 blocks by a kind stranger.

That could have gone much worse.

I have had lots of chair issues this past year, but none can really be attributed to the chair itself.  They've been the fault of people who are in charge of keeping it running, modifying it as needed, approving things.  My chair has been held hostage by bureaucracy, more or less.

There is definitely something wrong with the chair now.  And it's not a battery problem, because it's charged just fine.  Plugging a programmer device into the chair yields the following cryptic message: FAULT DETECTED E30 CPU EEPROM

How excellent.  It seems I am no longer immune to the electrical issues that plague so many powerchairs much earlier in life.  I've gone on about what a workhorse it's been over the last year and a half, but no more.  And once electrical issues start, I hear they never really stop.

It wouldn't be as frustrating if my manual chair were not so useless to me.  It's really just an indoor chair these days, not really good or safe outside.  And yet, I have a very busy week ahead...

Argh.

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The Medicaid Kill Off [Sep. 13th, 2005|12:51 am]
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[Current Mood | concerned]

In a recent post I mentioned being grateful for regular medical care. What I am is lucky, really, that I haven't yet been affected by the cuts that eat away at this care. Medicaid is my insurance. It insures many poor and most disabled Americans. It is always a target. People I know and know of are affected in horrible ways by the constant killing off of these vital benefits.

I am not not always on regular medication, so I suppose I might get by for a while without that coverage. I do see physicians and therapists on a regular basis. I require "durable medical equipment" (wheelchairs are in that category) that Medicaid pays for, while most private insurers stay away from chronic disability-related expenses as much as possible. Actually, disabled people are almost un-insurable outside of Medicaid, unless an insurance plan is required to insure you for a specific reason (child or spouse of insured party, or insured through an employer group plan).

Medicaid is a blessing and a curse. And a dire necessity for me and so many people I know. My roommate, without Medicaid, would almost certainly be living (and quickly dying) in a nursing home, despite the fact that in-home and community services are more appropriate and cost effective. It scares me, because it has happened to so many already. Without Medicaid, I might not end up in a home, or in immediate mortal danger, but definitely in serious trouble.

Yes, your taxes pay for my medical care (and the other 53 million like me). In this way I am a burden, I know. But without it, I don't stand a chance of being able to pay that forward. This country is drowning in war and debt and strife... this is another blow we cannot handle.

If you're not familiar with this issue, and even if you are, please read the following article (forwarded by [info]samidha). If there is anything you can do, even if that is just spreading the word, please do it. This is real. It is happening every day. It frightens me to my core.

(Useful points of contact are local independent living centers, legislators, advocacy organizations, press. I can help you find any of this information if you're so inclined.)



Marta Russell -- The Medicaid Kill Off
URL: http://www.zmag.org/sustainers/content/2005-09/04russell.cfm

ZNet Commentary
The Medicaid Kill Off September 04, 2005
By Marta Russell

Bush and the Congress slashed $10 billion from the Medicaid budget for this
coming year. Medicaid is the primary public health care program for
impoverished persons that serves over 53 million people.

The cut is clearly an attack on poor people and it may wind up killing
disabled and chronically ill persons before all is done. It is also a strike
from those segments in our society who wish to dismantle the entire Medicaid
system and there are undercurrents that will force a rollback of disabled
people's civil rights.

Even before this $10 billion slicing goes into effect, governors and state
legislatures in states such as Mississippi, Missouri, Minnesota, and
Tennessee are cutting back on Medicaid to reduce costs. Maneuvers include
restricting eligibility, paring down the rolls by kicking people off the
program entirely, eliminating or reducing "optional" benefits such as
prescription drugs, wheelchairs, diabetic testing supplies, rehabilitation
services, even oxygen, initiating co-payments for services including drugs,
and reducing payments to doctors and hospitals.

Read more... )
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A little less bliss... [Jun. 11th, 2005|08:24 pm]
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[Current Mood | frustrated]

I'd written about how great it was to be away from home for a few days, and yet so close...

I'm still in good company. But the weather has turned to crap; not that I can get out in it anyway. As in, I am stuck inside a hotel with a wheelchair lift that is the only means of entry and exit for someone using a wheelchair.

I had to go out to buy things, as this is a place that somehow does not stock napkins or paper towels, and we were not going to buy things to drink at their prices. I also wanted to run home and grab some other useful things. But I couldn't.

I must go out tomorrow, or else the whole weekend, with its concert goodness, is moot.

I am told, and I do know this innately, that the hotel should be owing me quite a bit if this doesn't get resolved soon. And I sure agree. But these things can be hard to battle, even when you're completely in the right.

Still, I'm largely happy. But it can all change come morning.
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Sometimes, you just need to get some keys made. [Mar. 26th, 2005|01:25 pm]
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[Current Mood | irate]

Why is it that so many hardware stores in my area have a step, or steps, at the entrance? That doesn't seem very handy.
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Another thing no one will answer [Mar. 15th, 2004|03:22 pm]
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[Current Mood | sleepy]

Name:
Age:
Place of Birth:
Reason for LJ username?:
Do you enjoy reading my LJ?:
Why or why not?:
Interesting fact about you:
Weird fact about you:
Quote:
Will you post this in your journal?



As an aside... so many things going on lately. Today, leather sorting and other busywork, and Spanish/English interpreting on the fly for a non-English speaking older woman trying out her cochlear implant for the first time... and her Spanish speaking home attendant and her audiologist, who was miffed for other reasons. Rather random for me, but it went well. This after being up since 4 am, trying to print out homework for someone who was about to leave on an airport shuttle (destination, CA) and couldn't find their brailled notes.

A blind, deaf and gimpy day all around.

Someone, make me write about these things, somewhere...

God, I hope my powerchair comes soon.

Napping.... now.
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Cold like a brick. [Nov. 12th, 2003|03:23 pm]
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[Current Mood | hungry]

[info]spacehobo makes me chuckle.

People have hurt themselves, others are in the hospital yet again, and it's cold out. Yum.

But the non-LJ is fixed. And I'm taking that new accessible taxi service to see what all the hoo-hah is about. (And the wallet cried.) So maybe I'll write about it later.
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October 15th [Oct. 11th, 2003|01:06 pm]
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[Current Mood | indescribable]

I think this post is supposed to make me feel better about not posting in my regular journal... but it will soon have a bunch of non-backdated, varied, and rambling posts, including (if all goes well tomorrow) a pseudo-concert review. And most of this post, just because.

So anyway, October 15th is an eventful day in several circles. Aside from millions of anniversaries, births, deaths, and other occasions that my limited scope of the world can't even begin to grasp, it is Love Your Body Day (a fact I think I first spotted in [info]mactavish's user info). I'm not a fan of slogans and most general empowerment sorts of things make me roll my eyes (despite, or as a result of having participated in several such organized efforts in the past), but I like this one. Not sure if this is the year I'll learn to love my body, but who knows.

October 15th is also the date of a conference being sponsored by Bronx Independent Living Services
called MAKING  SAFETY  ACCESSIBLE: How domestic violence & sexual assault affect people with disabilities. I've probably already posted about it at [info]gimpgirl, [info]no_pity, and [info]cerebral_palsy. Excessive? Maybe. But it promises to be a very good conference, especially because Harilyn is the keynote speaker. Not enough people with disabilities attend events that are really beneficial and well done. So I hope people do go to this, it's even centrally located.

It's an all day event, and I would go, if October 15th were not also Disability Mentoring Day. I wasn't sure if I was going to look into DMD, given my general wariness these days towards employment that is disability-centric... well, really, my wariness towards my inability to stay employed for very long, despite a solid resume, for someone who hasn't finished college (I'm not going to say "...after all this time". I'm just going to think it).

But knowing the local coordinator through someone else helped me feel like this won't necessarily be a day when businesses open their doors to share cookies and punch with young disabled people while telling them how cool it is that they'll have a job, someday.

My ship is in, it looks like my placement for the day on Wednesday will be at the Metropolitan Museum of Art. This is cool... but of course I can't get the dreams of possible employment out of my head. Well, isn't that what the day is all about? Sure... but I really need more money than what I have. I also really need to finish school, and working won't help me focus on that, necessarily. Nor is there money coming in from any familial fronts- in fact, those fronts make it a habit of draining what little I have (yes, because I let them).

On Monday, I'll be assisting the local DMD coordinator at his office, which is also Equality Staffing, a temp agency that focuses on hiring people with disabilities. With 200 workplaces wanting to participate in DMD, he is swamped, so if I can bring in some extra cash by contacting my fellow DMD mentees with their assignments, then, why not.

And who knows, something permanent may result from one (Monday) or the other (Wednesday). Or not. Who knows... for now I choose to think about how cool it would be to work at the Met; in a geek-cool kinda way, and how relatively possible, despite not having an art background. I do have an "arts" background... look, I'm doing it again. (note to self: shut up and wait to see what happens)

So here's to the 15th, and while I'm at it, the 18th, which just happens to be my 23rd birthday. Scary.
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Me and the IBM ad campaign [Aug. 13th, 2003|02:57 pm]
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[Current Mood | curious]

Well, for better or worse, it looks like I'll be heading downtown tomorrow to see if I have a shot (and want to, for that matter) at this...

We'll see how it goes.
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How Wayne Willeby's Computer Saved Him - a story about assistive technology (cross-posted) [Aug. 12th, 2003|01:43 am]
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[Current Mood | thirsty]

Because I'm on a gimpy-stuff kick, and have posted this everywhere else...

How Wayne Willeby's Computer Saved Him
Single-switch Connection to the World

A personal story about assistive technology )
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Gender/disability/culture roles, and guilt (almost random thoughts) [Aug. 11th, 2003|04:23 am]
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[Current Mood | lethargic]

This is a post from my journal/blog, which was originally posted here- first in [info]gimpgirl, then [info]no_pity and [info]cerebral_palsy.
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"I'm in a Wheelchair" on MTV's True Life [Jul. 21st, 2003|03:05 pm]
[Tags|, ]
[Current Mood | groggy]

Remember MTV's call for young wheelchair users? There was a casting call a
few months ago, for a documentary. This Thursday at 7:00 P.M. PDT, they
will be airing the documentary. See more at:
http://www.newmobility.com/review_article.cfm?id=729&action=browse

Original casting call: )

Somehow I'm not surprised they chose a young man who is an elite athlete and doesn't have a congenital disability...

(link found via NDSU mailing list)
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Community plug [Jul. 19th, 2003|05:12 pm]
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[Current Mood | chipper]

Well, I've done gone and used up my last invite code (must..have...more...codes) - look out, shameless community plug comin' through:

Please excuse this brief community plug...

[info]gimpgirl is an extension of the online GimpGirl Community, a place where women with all kinds ofdisabilities (and abilities) have come together to talk about what it means to be a "gimp girl" since 1998.

As with our mailing lists, [info]gimpgirl aims to be a safe and supportive space for information, education, and friendship. We welcome members of all sexual orientations and life situations.

[info]gimpgirl is moderated by [info]jennylin and [info]aleja.

Feel free to drop on by, and spread the word...

(Apologies in advance for any cross-posting that may occur.)

Well, there ya go. By the way, code donations, if you've got any, are welcome... for the community, not for me, silly. :p
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NYC Accessible Taxis Press Conference [Jul. 18th, 2003|03:33 am]
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[Current Mood | sleepy]

In case you might be interested...

NYC Accessible Taxis Press Conference - Wednesday, July 23, 2003 - 12:00 Noon - City Hall Steps
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Broken webcast [Jul. 10th, 2003|12:36 pm]
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[Current Mood | hungry]

The live webcast for WBAI doesn't seem to be working, so no one got to hear The Largest Minority online...

Otherwise, it went pretty well; I added to yesterday's blog entry about it.
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The Largest Minority on WBAI 99.5 FM (NYC) [Jul. 9th, 2003|11:21 pm]
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[Current Mood | tired]

This evening, I recorded a news summary segment for The Largest Minority, a
monthly radio program that airs tomorrow (Thursday), at 11:00 AM (Eastern
Time) on WBAI 99.5 FM here in New York City. [There's a live webcast
available on the website].

The Largest Minority is hosted by Phil Beder, and focuses on issues relevant
to people with disabilities.

Read more...
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I guess I've learned something... [Jul. 9th, 2003|02:05 am]
[Tags|, ]
[Current Mood | sleepy]

By no means am I an expert, but I don't think I had realized how much certain things have been pounded into my brain in the last couple of years, in terms of trying to figure out accessible, independent living in New York City.

This is what I mean...

Anyone else find themselves collecting information they wish they didn't know?
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"Are the boxes made of steel or something?" [Jul. 8th, 2003|04:50 pm]
[Tags|, ]
[Current Mood | amused]

A friend of mine pointed out yesterday's edition of the comic strip, Luann - which I now remember I read regularly years ago, I even had one of the books (Zane wasn't a character then):

Boss to Zane, who is in a wheelchair: Zane, would it be too hard for you to open these boxes? Zane: Why, is the knife dull?  Boss: No, it's just-- Zane: Are the boxes made of steel or something? [zizt, zizt, zizt, as boxes are opened] Boss: Wow! Is there anything you can't do? Zane: Sometimes i have trouble tap dancing up a ladder.

The scene ends in today's strip (too bad they don't add the ALT tags to the image).
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An interesting exchange... [Jul. 1st, 2003|12:02 am]
[Tags|, , ]
[Current Mood | surprised]

So I was writing in my revamped, slightly malfunctioning journal/blog thingy, about some local disability stuff. And I was curious (as I am about many things), wondering if there are any local writers/reporters covering these issues locally on a regular basis, as I've seen such things in publications from other places. So I asked someone who might know, and got an unexpected response:


Would you like to do a monthly round-up of relevant issues on Phil Beder's LARGEST MINORITY radio show on WBAI 99.5 FM. Our community's voice could be yours! Can't think of anyone better. Mainstream media picks up on disability every once in a while, but not adequately. A dedicated member of the community is much needed to keep everyone informed and help guide the efforts of advocates and policymakers... GREAT IDEA! Go for it!

-----Original Message-----
From: Alejandra Ospina
Sent: Mon 6/30/2003 6:27 PM
To: Wood,Alexander
Cc:
Subject: Local disability-oriented columnists?

Alex,

I was writing in my revamped journal (well, still working out the bugs) about about accessible taxis and AAR (http://www.superaleja.org/journal/archives/000013.html) and Anthony Trocchia's bus stopping sit-in
(http://www.superaleja.org/journal/archives/000014.html). And I thought, I'm just someone writing in a journal, there has to be someone who is writing about these happenings from the disability perspective on a regular basis... I've seen regular columns in papers from other parts of the country by people with disabilities on relevant issues- do you know of anyone locally who does that sort of thing?

Curious,
Alejandra


Me, dedicated? I'm just someone who reads stuff online.

Should I go on the radio? Hmm.
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