uppity disability dot net

JERRY LEWIS is a loser!

2009-02-20T20:32:00.000-08:00

folks - the man is a bigot and he tried to sue me - and he is rumored to be accepting the oscar in a wheelchair just to throw a wrench into the protest by over a dozen nationally known activists (including myself) to ask the academy to recind the "humanitarian oscar" Lewis does nothing but spew hate speech about gay folk, disabled folks, women and minorities.

hate speech breeds hate crimes. Jean Hersholt must be spinning in her grave.

this just in

OSCAR SHOWDOWN

Protesters with Disabilities Confront AMPAS Chief

Over Decision to Honor Jerry Lewis

Los Angeles – Nearly 50 activists from across the US protested at the Academy of Motion Picture Arts and Sciences (AMPAS) headquarters in Beverly Hills today, demanding to meet with AMPAS officials and to present a petition signed by over 2600 individuals objecting to the plan to grant Jerry Lewis the Jean Hersholt Humanitarian Award at this Sunday's Oscar Awards ceremony. The protesters, mostly people with disabilities, occupied the lobby and refused to leave. Finally, AMPAS Executive Director Bruce Davis was summoned to meet with the group, called The Trouble with Jerry. Lewis has long defended the use of pity as a fundraising tactic. He has also described disabled individuals as “half a person” and referred to a wheelchair as "a steel imprisonment."

At both the Kodak Theater and AMPAS, protesters distributed leaflets to mostly sympathetic pedestrians, including stars such as John Lithgow and Richard Libertini, as they came to collect their tickets for Sunday’s Academy Awards. Then protesters entered the AMPAS office to deliver the petition, printed on a long scroll of red paper, and featuring comments by 2642 people from around the world. Initially academy officers refused to accept the petition. Activists continued to occupy the lobby, singing songs and chanting "No award for Jerry Lewis!" AMPAS officials apparently called the police to eject the protesters, but before any arrests were made, Davis arrived to meet with the group's leadership.

During the meeting, protesters expressed the outrage they felt when they learned of the award, after having listened to Jerry Lewis' portrayals of life with a disability as incomplete, unsatisfying, even wasteful. "I have my own business, my own home, and a relationship," said advocate and writer Gary Karp. "Jerry Lewis would have you believe that people with disabilities can have none of those things."

Davis admitted to being aware of the longstanding concerns of the disability community about Lewis. However, Davis defended the award, pointing to the large sums of money that Lewis has raised for the Muscular Dystrophy Association. Davis asked the group whether those funds have not done some good.

Unanimously, the protesters responded that the harm done to disabled people's public image far outweighed the impact of the research dollars.. "The issue is how he raised that money," author and scholar Simi Linton told Davis. "Jerry Lewis trades on our dignity."

random txt message spam

2009-01-07T19:03:00.000-08:00

uppity disability dot net has NO idea how txt messages are being sent to phone numbers. or whatever other spam is being sent. Really - We are subscribed to a few listservs from the domain, but the admin uses a gmail account as his primary email account. sorry. - Mike R.

Obama raps..and wins...

2008-11-05T17:03:00.000-08:00

Too upset to discuss the WA state assisted suicide referendum, but since President - Elect Obama won, I had to smile when i saw this remix of Kanye West's Stronger...

Vote as if your life depends on it, Because it does...

2008-11-04T06:49:00.000-08:00

The title says it all. Justin Dart never uttered such truer words. no matter what, the Bush Presidency will be over. So today, go vote. I don't care WHO you vote for, just vote.

ada amendents signing coverage (or complete lack of it).

2008-09-25T11:22:00.000-07:00

Appearently no one besides congress members were present at the signing of the ADA Amendments act this morning. There is nothing on the white house website, C-span did not have it on the list of events they were covering, and I haven't really looked for media - but I did find Tom Harkin's statement, so without further adieu:

September 25, 2008

harkin statement regarding ada amendments act becoming law

Senator who was chief author of original ADA attended White House signing ceremony today

WASHINGTON, D.C. – Senator Tom Harkin (D-IA) released the following statement today after President Bush signed the Americans with Disabilities Amendments Act. The bill was recently passed unanimously by both the House and the Senate. Harkin was the lead sponsor of the bill in the Senate.

“The day, 18 years ago, when President Bush’s father signed the original Americans with Disabilities Act into law was the proudest day of my Senate career. But this day comes close, because this new law overturns Supreme Court decisions that have taken away the rights of people with disabilities, and restores the original promise and protections of the ADA.

“I think of my brother Frank, who was deaf, and who suffered terrible discrimination and exclusion, and I think of millions of other Americans with disabilities who face similar obstacles. As chief Senate sponsor of both the original ADA and this new ADA restoration act, I am deeply gratified that we could work in a bipartisan fashion to ensure that all Americans have the right to equal opportunity, full participation, independent living, and economic self-sufficiency.”

Since the ADA became law in 1990, a series of court decisions narrowed the category of who qualifies as an “individual with a disability,” contrary to Congressional intent. By raising the threshold for an impairment to qualify as a disability, these court decisions have deprived individuals of the discrimination protections Congress intended to provide. The ADA Amendments Act would remedy this problem and restore workplace protections to every American with a disability.

Hopefully some sort of media coverage will show up.

Mike R.

A profile on me and my nomination to the NSCIA Hall of Fame.

2008-09-08T00:21:00.000-07:00

The folks @ NSCIA made it really inviting to have a press release for my nomination to the Hall of Fame (too bad I'm going to lose to Harriet McBryde Johnson, but she is incredible as a writer and lawyer, and I can not honestly say I'm in any way worthy of anything over her.

My local paper did a wonderful piece on my nomination. Some cool famous folks even gave their two cents. I'm quite shocked and amazed and so truly thrilled it is hard to put into words. Thanks to all those folks who have been supportive over the years. I'm only as good as the folks around me.

obamas vp pick...waiting for the txt msg...

2008-08-22T20:05:00.000-07:00

OK, I thought it was just me getting antsy in the woods of Maine wondering when Obama would announce his vp pick - i had Fond memories of reading "Clinton Gore 92" there when i was 18 and a few weeks from entering college...

my hope: Biden, he's an elder statesmen. He has a relative in Maine, Biden's solid on disability issues and i think I've met him at some point.

I so wish I was in Denver. Twittering (Tweeting??) Denver would be much easier than trying to blog the DNC in Boston 4 yrs ago.

tho, the Michael Moore idea of Caroline Kennedy would totally be FTW! (for the win)

The AP seemed to say txt msg tomorrow am.

Time is saying Biden, bloggers found this, so I'm calling Obama/Biden 08...

Are you out there people who make unknown bloggers famous???

I called Joe Biden before the txt msg...

need a savvy disabled politico lefty blogger? uppitycrip at gmail dot com.

Call to save access to powerized mobility TODAY!!!!

2008-05-22T12:41:00.000-07:00

Come senators, congressmen
Please heed the call
Don't stand in the doorway
Don't block up the hall
For he that gets hurt
Will be he who has stalled
There's a battle outside
And it is ragin'.
It'll soon shake your windows
And rattle your walls
For the times they are a-changin'.
- bob dylan (hey, i saw him less than a week ago...)

Today, PLEASE call your senators and congress folks and ask them to take complex rehab wheelchairs out of the competitive bidding pool.

After you make your calls/send an email, record it at
http://www.vgmdclink.com/switchboard/

1. Ask your members of Congress to support passage of HR 2231
http://www.govtrack.us/congress/bill.xpd?bill=h110-2231 and S 2931
http://www.govtrack.us/congress/billtext.xpd?bill=s110-2931

2. Also ask your Representative to sign the Dear Colleague Letter,
http://www.aahomecare.org/associations/3208/files/House%20Medicare%20letter.pdf

Contact information for your member of Congress is at
http://www.ncartcoalition.org/

lower left hand of page, type in your zipcode

-Background, etc.,
http://tinyurl.com/6a7x5s

-Additional information at
http://tinyurl.com/6hggdk

What's New, http://www.aahomecare.org/

Today, Fight for your Medical Equipment Rights

2008-05-20T08:29:00.000-07:00

Today, Fight for your Medical Equipment Rights by listening to a Webinar about Drastic Medicare Cuts,

ON THURSDAY, Call Congress!

Marilyn Hamilton (The founder and inventor of quickie wheelchairs) is leading a national campaign to stop the cutback for Medicare Reimbursements on Power Wheelchairs. This drastic budget cut is targetted at the most basic needs of any human being - the right to move, independently. While the cost of everything - from Gas to Food, the government wants to cut spending for the most severely physically disabled folks. The people who need and benefit the most from powered mobility, are often the least able to afford it, due to disability, poverty, or other factors. The fact that most powered chairs are priced at over 10 grand, (A manual lightweight chair can easily cost 5 grand.)

Medicare dispursement rates are often used by private insurance (and state run, like Maine's Dirigo Plan) to set their own reimbursement rates. So it will effect other folks besides those on Medicare. It will also stunt future research and development on a myriad of other Adaptive or Assistive Mobility Equipment. Critical technology which would filter down in subsequent generations of cheaper chairs will not be developed,

This may afect you now, but as we all age, even those paralympians are going to want to give their torn rotator cuffs a break. Sunrise Medical (the company which now owns Quickie and some other chair brands) is sponsoring the event, but Marilyn Hamilton (who actually retired from Sunrise) is one of the disability rights movement's legends and whose history mirrors the DRM's history.

The webinar is Today at 2 pm - But there will be an archive of the Webinar on sunrisemedical.com and probably on my site as well as others, (still pending...) For info on the webinar about how Competitive Bidding will impact consumers

Register Here: https://www1.gotomeeting.com/register/144768277
-May 21st, National Call in, voice your concerns and request help to
carve out complex rehab from competitive bidding

The webinar will more than likely give this out - but the # is (202) 224-3121.
The sponsor list may be completely out of date - but a bunch of good folks are partnering with Sunrise Medical.:

-ADAPT
-American Association of People with Disabilities
-America Paraplegia Society
-Boston Medical Center
-Christopher and Dana Reeve Foundation
-Kennedy-Krieger
-National Council on Independent Living
-National Spinal Cord Injury Association
-United Spinal Association
-Self Advocates Becoming Empowered
-Shepherd Center
-Paralyzed Veterans Association
-Uppity Disability dot Net
-ILUSA.com

for more detailed info check out Sunrise Medical's website.

More Info soon.

Happy 25th ADAPT!!!

2008-04-27T19:56:00.000-07:00

(note - just a press release - we're bummed we cant make it to the events, tho adapt25.org may have more historical stuff.

Come to think of it, I *was* at ADAPT's 20th anniversary. I should probably post pics of that tomorrow. But my schedule tomorrow is gonna be tight. I'll work on that.

Washington, D.C.--- 25 years ago, Rev. Wade Blank, and Mike Auberger, Co-Directors of the Atlantis Community, a Denver Center for Independent Living, proclaimed their intent to take their local activism, which used direct action to bring about positive changes in the Denver community, to a national level.

Looking at the rag-tag group of two dozen people with disabilities that had shown up for a protest to make Denver mainline buses accessible, nationally renown organizer Shel Trapp shook his head and said "It will never happen." Yet, over the next 7 years, these three men and that rag tag group, along with dozens more that came to join with them each year, achieved exactly that outcome by forming ADAPT, then known as Americans Disabled for Accessible Public Transit.

25 years later, over the course of a week, from April 26 to May 2, in Washington, D.C., over 1000 people with disabilities and supporters from all over the country will participate in a variety of events to remember ADAPT's humble beginnings in 1983, celebrate the growth and progress of the disability rights movement during the past 25 years, and set the stage for continuing activism in the years to come.

ADAPT's humble beginnings grew into a national grassroots activist movement that has changed the face of the disability rights movement. ADAPT has been memorialized in photos by Tom Olin taken at ADAPT actions over the years. Olin's photos of ADAPT have appeared in the Smithsonian, are part of the National Civil Rights Museum, and show up continually in national press and media, in scores of books, on posters, and in every corner of the world wide web.

Events occurring during the ADAPT 25 anniversary celebration week include:

* A Sunday, April 27 Fun Run/Roll around Upper Senate Park in Washington, D.C. that is open to the public and serves as combination fundraiser and celebration kick-off.. The National Fun Runner/Roller is Marca Bristo, Executive Director of Access Living in Chicago, IL, and one of the founders and former president of the National Council on Independent Living, and Chair of the National Council on Disability during the Clinton Administration.

* Three days of activism throughout the Washington, D.C. area on April 28-30, including the announcement of the 2008" Ten Worst States in the Provision of Home and Community-based Services."

* An April 30 evening showing at the Holiday Inn Capitol Hotel of "When You Remember Me," a made for TV movie starring Kevin Spacey, Ellen Burstyn and Fred Savage. The film chronicles ADAPT co-founder Wade Blank's work freeing young people with disabilities from a Denver nursing home...work that led into the creation of both Atlantis, and then ADAPT.

* A May 1 daylong celebration at the Holiday Inn Capitol Hotel that will include multi-room historical exhibits, multi-media presentations, StoryCorps, The Road to Freedom Bus, an anniversary cook-out and an evening retrospective show with live music, and remarks by former Rep Pat Shroeder (CO) and ADAPT activists from around the country.

The public is invited to participate in the Fun Run/Roll on April 27 or sponsor participants (www.adaptfunrun.org), and to tour the exhibits at the Holiday Inn Capitol Hotel on May 1.

ADAPT crawled up the Capitol steps in 1990 to help push the Americans with Disabilities Act (ADA) toward passage when it was dangerously bogged down in Congress. When the ADA passed, lifts on buses were the first change required. ADAPT has assured that over-the-road buses, along with local transit, had to comply with the ADA.

ADAPT is credited with being the reason for the 2005 passage of Money Follows the Person legislation that allows people with disabilities in nursing homes to move back into the community with their funding "following" them to provide services and supports in their own homes. Over the years ADAPT efforts nationally have been largely responsible for the federal government moving to "rebalance" the nation's long-term care funding from being overwhelmingly institutionally biased to a system that will equally support home and community-based services.

ADAPT is currently working for passage of the bi-partisan Community Choice Act (CCA) (S. 799, H.R. 1621), which would completely remove the Medicaid institutional bias and allow people to choose to remain in their own homes with the services and supports they need rather than being forced into nursing homes and other institutions in the first place.

People interested in learning more about ADAPT and/or the 25th Anniversary events can go to the websites above, or call 512-442-0252, or 303-733-9324.

Hockenberry New show on Public Radio

2008-04-27T18:40:00.000-07:00

Hi Folks-

John Hockenberry has been a busy guy - He spoke at the MIT museum
earlier this month on human augmentation, completely redid his
website, has a twitter channel (twitter.com/JHockenberry) is raising 4
kids, and he's returning to his roots, starting a national morning
talkshow carried by WGBH and wnyc and others. It starts tomorrow at
like 6 am (no joke, really, who is up at 6 am...and you need to switch
stations if you stream it as there is a second hour from 8-9 (check
out www.thetakeaway.org for more detailed info. So why should you
listen.

Well, pull up a chair, how long do you have...

John Hockenberry is the damn savior for disability media. (maybe
savior is too strong a word) John Hockenberry is a guest lecturer at
the MIT Media Lab (The only program I'd consider attending in the Ivy
League.) John has won more Emmy's and Peabody's than Bill O'Reilly
(and totally stiffed O'Reilly by not going on his show earlier this
year.) Hockenberry writes (with some prodding) amazingly important
essays on disability rights and definitely supports the activist crips
out there. And besides all of that, He actually sounds like he knows
what he is talking about, even on public radio - that's a good thing.
I can't promise you he'll cover the Adapt 25th anniversary that starts
suspiciously right around the start of his show. Heck, 99% of you will
probably have to catch it online (thank god for winamp and wifi, and
podcasts) But Hockenberry's been at the forefront of new media when
he was hosting Heat in the early 90's (and gave some unknown singer
songwriter, Shawn Colvin, her first national radio spot and had
seminal band Uncle tupelo in his studio, along with Billy Bragg.) Who
knew Uncle Tupelo would break up and form wilco and billy bragg would
record 2 albums with them. It probably had NOTHING to do with
Hockenberry, but hey, it could have. You can actually hear Heat at
www.prx.org

Hockenberry had this cool indie film intellectual show called Edgewise
(which was 20, not 10 years ahead of it's time,) and he had some folks
from ADAPT on, and Vic Chesnutt, (sorry, i just realized how warped
say, a NSCIA conference could truly be if Vic ever gets into the Hall
of Fame, if you have no idea who vic is - wikipedia him) He had
Jessica Yu, breathing lessons director, oscar winner, on as well
(altho, it was WAAAY after I got a print interview with her.) and it
was cancelled, and some anonymous dork was asked to spread the rumor
of it's cancellation before people on his crew even knew.

We'll just skip Dateline, tho his ADA special was cool.

But TOMORROW marks a whole new beginning for the ways in which
supposedly people can interact (we aren't talking Sean Hannity passing
George Stephopolis bad questions about Bill Ayers) with an interactive
website - and if that doesnt impress you - he totally redesigned his
blog (www.johnhockenberry.com) with a couple new videos (tho - you'd
think he's at least have his own youtube channel. sheesh. MIT
Disguished media lecturer who ... nevermind, I'm being elitist.)

And if your on Facebook, there is a un-official fan site called
Takeaway Fans Unite! - word has it Mr. Hockenberry even joined the
group - so you should too. and Heck, add me as a friend.

So Happy 25th Birthday ADAPT. celebrate by watching the Takeaway...

www.thetakeaway.org
www.wnyc.org

free (and shameless) public relations promotion/ obsessive fan boy
email/ blog courtesy of Mike R.

Medicaid and Power Chair payments...

2008-04-21T13:02:00.000-07:00

This landed in my email box with a note to fwd widely, and this does have some real implications to the wider disability community - including folks who do not qualify for medicaid or Medicaret. As indicated below - Many private insurance companies use the Medicare funding numbers to set their own reimbursement rates. Some states (I am not exactly sure of the status in Maine) are changing the requirement for wheelchair lifespans (The normal time that a wheelchair should last from 5 to 7 years,) and that change will very likely also be a change to private insurance. People are already using hand me down chairs or technology to get mobility issues covered. While the wheelchair model isnt really scalable to other forms of DME due to the funding structure of repairs and the way that's figured into the retail cost of the a wheelchair, it's an unsettling proposition.

So if the rising cost of gas isn't an headache enough, one more thing to worry about.

MJR

POWER WHEELCHAIRS â€“ A REALITY CHECK:

Okay, so whatâ€™s the reality concerning your next power wheelchair? What
changes has CMS made this past year and a half? It all began November 15,
2006, but really started Jan 2007, when all power wheelchair payments made
by Medicare were reduced by 27%.

Now starting July 1, 2008 the same power chairs will be reduced again by
19%. This additional payment cut by CMS is from Medicareâ€™s National
Competitive Bidding (NCB) program.

NOW TO THE REALITY CHECK:

If a consumer received a chair back before these dates a supplier would have been paid, let's say $8,000.00 for example. For a consumer to be given that same chair today the dealer will receive $5,840.00. Okay now, after July 1st because complex rehab was competitively bid - the amount will go down to $4,730.40.

So the BIG question is ... Will a consumer get the same quality chair as your last one? Well...when you look at the cold hard economics ....it is impossible to imagine. Most likely you will be provided with a chair of lesser quality and fewer features because of the dramatically reduced payments. How can a supplier purchase, service and provide to a consumer the same quality chair and features as before with these dramatic reimbursement reductions. Consumers will get a wheelchair but it will not be comparable.

While Medicare went into competitive bidding saying that consumers would receive the same quality products and services, it's not possible. With 2 serious power wheelchair reimbursement cuts since January 2007 amounting to over $3250.00 on a basic $8000.00 chair itâ€™s not likely.

THE DOMINO EFFECT: So who does this affect? Just Medicare, right? NO
...WRONG!

PRIVATE INSURANCE:

It's important to know ....all other insurers mostly base their payments off of the amount that Medicare pays. Which means the dealer will be receiving less that the $4,730.40 from even private insurance companies. Again, consumers will receive products that will not be of the same quality and features as they received previously from Medicare or Private Insurance.

NOW WHAT ABOUT DUAL Medicare and Medicaid?

Are they hurt by this program? YOU BET!

Medicaid is different in each and every state, however; few if any pay the Medicare price and in most cases they can not pay more than the amount that Medicare pays. SO.... Read below where the head of Medicaid policy in Ohio says they will set their payment at about 20 to 25% below the Medicare rate!!!! Now the dealer will receive for the $8,000.00 chair of a year and a half ago a grand total of $3,547.80 as full payment for the item.

Remember the "DUAL " Medi-Medi can not pay nor can the dealer collect money
from that person and must accept this amount as payment in FULL!

Under the Medicare program a consumer (NOT A MEDI-MEDI) can choose to do an upgrade and pay for "deluxe" features and options€.

So what this wonderful program has done is to "Cost Shift" to the consumer for payment if they want to receive the exact chair they have today or, they must accept a much lesser chair.

CONCLUSION:

Wheelchair technology advancements over the past 2 decades have made incredible leaps offering consumers amazing functional features and options allowing them to live a more independent, productive lifestyle. Medicare provides consumers only the features and options that are medically necessary for them â€œIn The Homeâ€. With the 2 new reduced complex rehab payment rates consumers will receive inferior equipment and decreased services than previous wheelchairs. We are at a serious turning point for
the worse. This is criminal. Equally bad is that other third party insurers base their payment off of Medicare. Is it time for you to voice your concern????

NEXT STEPS: What can you do?

(edited as some events have passed)

Support HR 2231, http://www.govtrack.us/congress/bill.xpd?bill=h110-2231

New Obama video everyone should see once...

2008-02-07T08:35:00.000-08:00

He's coming to Maine Saturday (Bangor) Anyone wanna go???? Given that several key disability leaders have endorsed him, I'm throwing my support behind him. And the Song ROCKS!

or maybe it's "please DO taze me?" Musings on the JRC Hearings

2008-01-17T17:27:00.000-08:00

Score one for effective PR when Brandon Sanchez was brought in front of the committee (like an animal on exhibit at a zoo, Which was gut wrentching because, well, I know folks like Brandon,) and yeah, his behaviors were a bit disconcerning, but he was not wearing the GED system, so I figured at least the hearings were positive in that the student who led Matthew Isreal to create the GED was, for eight or so hours, not wearing a GED.

I wasn't prepared to see this and see an similar photo on the cover of the Boston Globe today. It's a compelling photo, but I feel, being there, it was compelling for a whole host of different reasons than seeing it on the front page today. It's sad that the reality as a person at the hearings, essentially, Brandon was kept out of the hearing room until his uncle decided to put him on show as if he is an exotic animal. "The hardest to treat, the GED saved his life" his uncle, a member of the legislature who has stopped previous anti-aversives legislation, said. I thought he looked scared. He walked in a sullen way, head down, like the other children described in the Mother Jones article or other published reports of the treatment at JRC.

As a person who has been labeled a "behavior problem" who "probably won't finish high school" let alone college, I felt a sense of "wow, I'm lucky I had a mother that refused to even consider a residential placement." A full decade after I got my degree in English, and Disability Studies, I'm glad JRC's "advertisements" weren't big in the Lewiston School System.

1-14-08 Blogging Against Aversives

2008-01-13T20:35:00.000-08:00

The Massachusetts legislature is hearing 4 bills specifically against JRC, a controversial facility that uses aversive therapy to treat autism and much lesser antisocial behavior. Mother Jones wrote an amazing story. JRC may make headlines, but in schools across the country time out rooms are used far too much, ed techs are asked to do "take downs" on students, and while some states have great laws regulating their use in schools, who knows what happens in non-school settings, from the "difficult" nursing home patient, to a developmentally disabled adult who might be frustrated and unable to express his thoughts fully. It just seems that while it is necessary to prevent someone from hurting themselves or others, it is a slippery slope to where it seems physical abuse could potentially occur (in any facility! staff and people with disabilities are both in danger of getting hurt), and it's always nice to think about realistic alternatives to aversive therapies.

Here is a list of bloggers who plan in writing stuff - email uppitycrip (((at))) gmail dot com if there is any you find i may have missed.

The Furnace of Doubt

Not Dead Yet

http://stirthis.blogspot.com/ - Veralidaine

http://www.crip-power.com - Mscripchick

http://www.livejournal.com/users/trinityva/ - Trinity

http://thegimpparade.blogspot.com/ - Kay Olson

http://lastcrazyhorn.wordpress.com - lastcrazyhorn

http://mybignoise.blogspot.com/ - Cilla

http://mommydearest1514.blogspot.com/ - Mommy~dearest

http://qw88nb88.wordpress.com/ - Andrea

http://disstud.blogspot.com/2008/01/whatever-works-is-not-free-pass-for.html - Penny L. Richards

It's 2008, Thank God.

2008-01-04T11:42:00.000-08:00

I was very ill for most of December, at times terrified and panicking about pain, quality of life issues, and was really fearful for the future, though things seemed to get tremendously better once I got surgery to get rid of the pain. Somehow, now I'm much better, though today I'm in a bit of pain. I'm working on a few new projects, some that will be announced soon. John Hockenberry's article on the demise of corporate television, NBC especially, is getting HUGE play in the bloggosphere, and his new show, Billion Dollar President, is really interesting, innovative, and worth a listen to.
Currently I'm really interested in the anti-aversive legislation pending in Massachusetts, Looking at open source development and media, and open source assistive technology. I am thrilled Barack Obama won Iowa,and the Radiohead album is still pretty incredible.

be well-

Mike R.

Hockenberry's New show on NPR.

2007-11-06T19:29:00.000-08:00

I mailed this out in the AM - THE SHOW totally rocks the world. the mp3 is on the billion dollar president website.

John Hockenberry's new NPR show debut's TODAY at 3 pm on WNYC FM out
of NYC, but there are definitely webcasts at http://www.wnyc.org, it's
on the FM stream at 93.9 at 3pm est, 7 pm repeated on the AM stream.
There will be archives made in mp3, so if you miss it, shoot me an
email privately, I'll figure out how to get you the mp3. (I'm
assuming they'd be smart enough to podcast it, but just in case)

The folks at WNYC have a blurb about "Billion Dollar Presidency" so I
figure the '08 race will be the focus. Yes, it's really happening,
Hock is back on the radio. It'll be awesome to hear him with his own
(Adaora Udoji co-hosts so it's not exactly HEAT 2.0, but still cool
enough to definitely check out)

I'm sure NPR, or more precisely PRI, has a pr team, but you all have
me so you don't miss out.

Back to figuring out grad school applications...yes plural. (msg to
l.z. - will email u soon)

oh - if you need a visual - http://www.youtube.com/watch?v=UBzrkwSCXp4

yeah - that's what MIT media lab fellows do - set up watercoolers at
washington sq park....hrmmm...

ck out http://www.billiondollarpresident.org/

peace -
Mike R.

PS - i'd love it if Mark Johnson would forward this, but a little
birdy told me he is somewhere in DC doing something with the
NSCIA...that's all i am saying!

the things that blow my mind...the new radiohead album and videotape

2007-10-10T17:38:00.000-07:00

Videotape

When I'm at the pearly gates
This will be on my videotape, my videotape
Mephistopheles is just beneath
and he's reaching up to grab me

This is one for the good days
and i have it all here
In red, blue, green
Red, blue, green

You are my center
When i spin away
Out of control on videotape
On videotape
On videotape
On videotape

This is my way of saying goodbye
Because I can't do it face to face
I'm talking to you after it's too late
From my videotape

No matter what happens now
You shouldn't be afraid
Because I know today has been the most perfect day I've ever seen.

In my own sick, wierd and not exactly literal mind, i keep thinking of the victims of kevorkian making those videos, and while i totally disagree with assisted suicide, i think it is a beautiful song with haunting imagery. Radiohead is one of my favorite bands ever and i cannot tie this directly to disability rights, i can at least say it will be music for the daily revolution. Best album of 2007...without a doubt.

check it out at the official site.

Mike R.

Over 120 Arrested When ADAPT Refuses to Sign Statement Supporting Institutions

2007-09-13T18:13:00.000-07:00

Over 120 Arrested When ADAPT Refuses to Sign Statement Supporting Institutions

Chicago--- Today ADAPT confronted Council 31 of the American Federation of State, County and Municipal Employees (AFSCME) on their support of reopening the state’s Lincoln Developmental Center institution, and AFSCME’s refusal to endorse any legislation supporting home and community-based services for people with disabilities. AFSCME responded by asking ADAPT to sign a statement supporting institutions authored by AFSCME director Henry Bayer, and when that didn’t happen, Bayer had over 120 people arrested for blocking the doors, elevators and parking lot of the AFSCME building.

“It’s impossible to negotiate human and civil rights issues with people whose only concern is their own pockets…no matter how many people are warehoused and deprived of their liberty as a result,” said Mike Oxford, Kansas ADAPT Organizer. “They typed up a statement supporting institutions and asking for money, and then couldn’t understand why we didn’t want to sign it.”

ADAPT has met repeatedly with AFSCME leadership, receiving a commitment from Gerald McEntee, the union’s president, to sign on to legislation that supports home and community-based services and supports for people with disabilities and the elderly. That promise was never kept, and was one of the reasons ADAPT visited the Council 31 offices.

“For an organization that has its roots in the civil rights movement, their treatment of people with disabilities is even more despicable,” said Randy Alexander, Memphis ADAPT Organizer. “The union and its members make a lot of money by advocating to keep people with disabilities and older folks stuck in nursing homes and other institutions instead of being able to live in their own homes like other people. It’s unconscionable that the union fights for workers’ rights at the expense of our rights. In ADAPT, we know that you can’t have one without the other.”

The arrests at AFSCME concluded the week of ADAPT action in Chicago. The week began with a national Affordable, Accessible, Integrated Housing Forum, attended by federal officials who heard testimony from people with disabilities about the lack of adequate housing, and the discrimination they have experienced when trying to secure housing. The forum was followed by three days of action on the streets that included gaining a commitment from Governor Blagojevich for permanent closure of the Lincoln Developmental Center, and assuring ADAPT a seat at the table as Illinois enacts its Money Follow the Person demonstration. The next ADAPT action will be in Washington, D.C. April 26-May 2, 2008 when ADAPT celebrates its 25th anniversary.

###

for the MOST comprehensive ADAPT Chicago info - Not Dead Yet and EndeavorFreedom are getting the direct phone calls

ADAPT TV Coverage

2007-09-11T14:35:00.001-07:00

From Endeavor Freedom TV: (friends/ partners of ours...)

Find more videos like this on EndeavorFreedomTV

And it appears they have a blockade going on today as well.

80 arrested at ADAPT Protest

2007-09-10T19:10:00.000-07:00

80 ADAPT Disability Activists Arrested Attacking Segregation in Chicago

Chicago, IL--- More than 500 ADAPT activists from around the country
converged in Chicago September 8th-13th to take action against a
crisis in Illinois that is the poster child for a larger national
problem. The crisis is directly caused by a record of bad decisions
made by Illinois state officials, and the institutional bias built
into the way the nation’s long term care (LTC) system is funded.

Today activists made “house calls” to the American Medical
Association (AMA). Thus far, 80 have been arrested. Their demands are as
follows:

Demands are to

1. Endorse Community Choice Act and actively promote its passage (e.g.
include on AMA website and on advocacy agenda);

2. Work with ADAPT to develop an action plan to assure that people with
disabilities and seniors get REAL CHOICE in services/supports and are
able to live in most integrated setting. Provide membership with
continuing medical education programs about community-based
alternatives to institutionalization;

3. Require that AMA Board of Trustees and leadership divest
themselves of all financial interests in nursing facilities, etc.;

4. Develop AMA ethics policy that all AMA member MDs must full
disclose their financial interests in any facilities to their
patients when discussing issues, and not refer any patient to an LTC
facility in which they have any financial interest

ADAPT will assure that Gov. Blagojevich knows that his plans to
reopen a state institution for persons with developmental
disabilities and his lack of support for Money Follows the Person
legislation are actions of segregation and in violation of the U.S.
Supreme Court’s Olmstead decision. ADAPT will also challenge the
Illinois Congressional delegation to take a leadership role
nationally in eliminating the institutional bias so people with
disabilities and older Americans can live at home with dignity.

Currently, Illinois ranks 41st in the nation for providing the
community-based services that will allow disabled and older citizens
to stay in their own homes. Illinois’ long record of being in the
bottom ten states puts it among the worst when it comes to human
rights in general and disability rights in particular.

“It turns my stomach to know that my state, historically a home of
civil rights in America for people of color, is the same state that
is one of the worst civil rights performers in regard to people with
disabilities,” said Chicago native Larry Biondi, an organizer with
Chicago ADAPT

While in Chicago, ADAPT held a national housing forum that will
be attended by HUD Fair Housing Assistant Secretary Kim Kendrick, and
state and local officials. At the forum, ADAPT presented its
national housing agenda; took testimony from people across the
country who have had difficulty finding affordable, accessible,
integrated housing; and distribute information on pending
visitability legislation, and the redirection of HUD’s 811 Supportive
Housing program funds to projects that are integrated. Currently, the
811 program primarily funds segregated housing situations for people
with disabilities.

“As we have begun to make progress in getting people out of
institutions, and preventing people from being forced into
institutions, the lack of affordable, accessible, integrated housing
in typical neighborhoods has become glaringly apparent,” said Beto
Berrera, a member of Chicago ADAPT and a Chicago housing expert. “We
are hosting this national housing forum so that federal officials can
hear just how bad the situation is, and to gain their support in
working with us to right this wrong.”

I Do not accept Jerry's apology

2007-09-04T20:08:00.000-07:00

sorry glaad, as a disabled quuer male, i do NOT accept the apology. As a disabled filmmaker, activist, writer and (obvisiously) blogger, I find it funny that an ex-star loses his job on Grey's Anatomy for saying the word on the set, yet glaad is rushing to accept his apology. go to new mobility to look at the sexism he has not apologized for.

Wow, not like he walked out of a public book reading swearing up a storm because disabled people challenged him...

blogging against jerry lewis

2007-09-03T09:54:00.000-07:00

um. my blog is video...

Thanks to the folks at Crip-Power.org

Mike R.

testing the infrastucture for a possible web tv project

2007-07-29T14:20:00.000-07:00

did this work, it does full screen and i have a ton of stuff to add to the net, but it looks like we may leave something like youtube entirely and maybe do some sort of disability related video content distribution. Yes, this does true full screen.

Calling the Associated Press out on bullshit tactics

2007-05-31T15:10:00.000-07:00

Disability Activists Blast AP For Badly Botched Kevorkian Survey, Reports Not Dead Yet

AP-Ipsos Poll on Kevorkian Inaccurate and Misleading

For Immediate Release

FOREST PARK, Ill./EWORLDWIRE/May 31, 2007 --- Disability activists from Not Dead Yet have demanded corrective action from the Associated Press after the release of poll data just three days prior to the parole of Jack Kevorkian. Kevorkian has served eight years on a second-degree murder conviction for his killing of Thomas Youk by lethal injection.

According to a widely-distributed AP story announcing the results, 53 percent of the respondents disagreed with Kevorkian's incarceration.

According to disability activists who have followed Kevorkian's career closely, the results are highly suspect since the question the public was given misled it in regard to the nature of Kevorkian's crime and the characteristics of his overall "body count."

According to the AP, the survey asked the following question:

"Do you think that Michigan doctor Jack Kevorkian should have been jailed for assisting terminally ill people end their own life, or not?"

"This question misinforms the respondent about the nature of the crime Kevorkian was convicted of and also mischaracterizes the health status of the majority of people who died at his hands. As anyone who watched the 60-Minutes telecast knows, Kevorkian directly injected lethal chemicals into Thomas Youk. This is not 'assistance'," says Stephen Drake, Not Dead Yet's research analyst. "Further, the word 'people' is paired with 'terminally ill', indicating that the majority of his body count consisted of people who were close to death." Beginning with the Detroit Free Press series 'The Suicide Machine' in 1997, there is overwhelming documentation that the majority of people who went to Kevorkian had non-lethal chronic conditions and disabilities.

Diane Coleman, president of Not Dead Yet, personally contacted Trevor Thompson, the AP's Manager of News Surveys, to demand a retraction and correction.

"Mr. Thompson eventually agreed the question didn't jive with the facts of Kevorkian's career or conviction but rejected any corrective action after consulting with the D.C. Bureau Chief, Sandy Johnson. Johnson claimed that the story about the poll was accurate, disregarding responsibility for contaminating the poll with a misleading question."

Carol Gill, Ph.D., agrees with the concerns of Not Dead Yet. "All good survey designers know that misleading questions produce invalid results. When participants are asked to respond to inaccurate and confusing items, the result is spoiled data. Unfortunately, this poll contained flawed questions. It's impossible to base sound conclusions on these results." Professor Gill is a research psychologist and associate professor at the University of Illinois at Chicago.

Drake adds that the refusal of Thompson and Johnson to address the misinformation in the poll is a violation of the AP's public "Statement on Values and Principles," which calls for swift and comprehensive corrective action when it publishes erroneous information.

"This is worse than the usual error," says Drake. "In this case, it created news in the form of a survey and then reported on that fabrication. Instead of simply reporting misinformation, AP has created the information in a way that superficially resembles scientific sampling. It has knowingly polluted the public discussion about an important public policy topic - and the organization is refusing to take responsibility for it."