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 whatâs 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 Medicareâs 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 itâs 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 âIn 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 nations 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 Courts 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 HUDs 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."

Dennis Kucinich Interview -5/19/07

2007-05-21T21:07:00.000-07:00

Here is a 13 minute interview with Dennis Kucinich, I got two other events from this Saturday, however, I was using a rather low quality digital camera and I did *NO* editing on this interview as I wanted it up ASAP. It is very likely that this site will be getting new (to us!) video equipment soon. More updates soon!

More on Human 2.0

2007-05-19T20:20:00.000-07:00

Human 2.0 was absolutely amazing - An Excellent web cast archive is on the MIT Media Lab's site. I almost wish they'd throw it up on Google video so it can be downloaded to a PC easier. Too many amazing highlights - it was cool seeing the Hockenberry Family making a day of daddy's new job. It was my first time meeting Zoe and Olivia, they seemed really shy, but at the end of the day, Daddy's wheelchairs was the coolest play toy. Oops...I'm jumping ahead. The auditorium was extremely hot, but it was a gorgeous day out.

I'm trying to remember what presentation was my favorite and it's totally impossible to rank it. The speech between design guru Michael Graves and John Hockenberry was stellar. That and Oliver Sacks speech was the highlight of the morning. Well and the mid morning break when Hockenberry's wife said hi to me and knowingly asked "Did you whoop when John came out?" Umm Guilty... Yeah, when your friends email you saying "I so totally heard you on the web cast." Look okay in my mind,it was like a concert and it even got Frank Moss stoked. It wasn't the worst thing I've ever done.

Afternoon was spent trying to figure out if my digital camera was dead (it wasn't) but my video is horrid compared to the media lab web cast. I was also agonizing how to figure out how to introduce myself to Amanda Baggs, and sent emails to mutual acquaintances, I was not going to bug her, since she has all the CNN lovers bugging her and like, that WAS cool, but her website against Autism Speaks was so much better. I ended up waiting for Hockenberry and so was she, and we ended up talking for a while and she is such an amazing writer and just has such a grasp on trying issues together or describing sensations or really good conferences. Well, she writes incredibly well and she is very verbose. Do a Google search on her name to find her blog. There is literally hundreds of posts and it is so good, like - it makes this stuff look very, VERY, lame.

The stuff from Hugh Herr about prosthetics and amputees and the strongest ankles in the world was really cool. He also seemed cool when I chatted with him after the event.

But the high point, well there were several, but Dan Ellby totally rocked the house down. Watch the last twenty minutes of the web cast for his song. He needs an Ep on Itunes, trying to describe his work lends me to say ambient electronica, but with orchestetration like mu-ziq or warp records stuff. As Dan finished, Hockenberry rolled out on a modified Segway that had a seat, and Hugh Herr climbed this Extremely DIFFICULT rock wall as a end. it reminded me of Moby's Play Tour encore of "Thousands", but with much more crip powered geekiness.

The end of the conference led to wierd hor d'overs, and a catered full bar. And someone who let ME, spastic dorkiness, try a segway. The Segway was so completely cool. I ski, I have rode a half pipe on a skateboard and bike, and the segway was just so totally...COOL. Hockenberry said I had the biggest smile on my face, and given the drama the week had provided (wierd family issues), that was a definite upgrade for me.

(i really should post that photo of me on the segway but it is late...)

Interview with a Presidental candidate coming soon

Mike R.

Human 2.0 blogging

2007-05-09T11:53:00.000-07:00

first a required photo of John Hockenberry

From images-2007

ok, Loads of people here - michael graves, Amanda Baggs, Oliver Sachs, right now Bill Mitchell is speaking. It is a great conference, tho it is extremely hot in the auditoium. MIT is streaming it online at http://www.media.mit.edu/.

new pdf of our day planner "Access '07"

2007-03-14T20:00:00.000-07:00

I found a nifty program called click books which makes printiable pdf versions of books far easier. The trial version leaves an annoying stamp - but it is still actually much easier to print than the one that is still available to download on lulu.com. We will be doing a 2008 edition (it will be done by early October, so it can be gifted and be much more "accessable" to people. An electronic version will be done soon - it's been a wild ride (of hospital visits, procedures, and healing then other parts of my body going into horrid pain. then healing, etc.) since the beginning of the year. Hopefully the early Daylight Savings Time will bring a bit more energy, cuz i really wanna ride my bike soon.

Download Access Here.

Mike R.
ps - make yer own cover!!!!

National day of action over the ASHLEY Treatment.

2007-01-09T12:59:00.000-08:00

CTION ALERT

Fax/E-mail/Phone Campaign

Feminist Response in Disability Activism (FRIDA), with the support of Chicago ADAPT, the national ADAPT community and Not Dead Yet, invites you to speak out about the “Ashley Treatment.”

Our Targets: Seattle Children’s Hospital staff involved in the case of nine-year-old Ashley’s growth attenuation and sterilization, as well as Melinda Gates, chair of the Seattle Children’s Hospital fundraising committee and Susan Macek, Director of Communications for Seattle Children’s Hospital.
Why: To oppose their permission of what is now known as the “Ashley Treatment,” and to condemn further permission of such “treatments” for children with disabilities whose lives are not otherwise at risk.

When: Tuesday, January 9, 2007, starting at 9 am in your time zone.

Contact Info:

Dr. Douglas Diekema

Phone: 206-987-2380

B-5520 – Emergency Medicine
4800 Sand Point Way NE
Seattle, WA 98105
Fax: (206) 987-3836
E-mail: Douglas.diekema@seattlechildrens.org

Dr. Daniel F. Gunther
Phone: (206) 987-2380
M1-3 – Endocrinology
4800 Sand Point Way NE
Seattle, WA 98105
Fax: (206) 987-3836
E-mail: Dan.gunther@seattlechildrens.org

Melinda Gates
PO Box 23350
Seattle, WA 98102
Phone: (206) 709-3100
Fax: (206) 709-3252
Email: info@gatesfoundation.org

Susan Macek
Director of Communications, Seattle Children’s Hospital
Phone: (206) 987-5201
Pager: (206) 469-6310
E-mail: susan.macek@seattlechildrens.org

Ashley is a nine-year-old with a severe cognitive disability. In order to keep her small and more easily cared for by her family, doctors at Seattle Children’s Hospital are having her undergo hormone “therapy” to stunt her growth. In addition, they surgically removed her breast buds, uterus and appendix. The “Ashley Treatment,” as her parents call it, is a medical “fix” to serious social problems we face in America today. The first of these problems is a lack of quality home-based services for people with disabilities. The second is the social attitude that people with disabilities are less than human and therefore fair game for experimentation. The third is a lack of understanding of disability vs. illness: as Joe Hall of South Carolina has stated, “When I was born my parents knew that I would never walk, but they would have never thought it would be acceptable to cut my legs off.”

To review Ashley’s parents’ blog, please see:

http://ashleytreatment.spaces.live.com/

To review one of the original articles as reported by the BBC, please see:

http://news.bbc.co.uk/go/pr/fr/-/2/hi/americas/6229799.stm

We need to let the Seattle Children’s Hospital and its fundraising chairperson know that the Ashley Treatment has not gone unnoticed by those of us who live with disabilities.

For more information, AND TO KEEP US POSTED OF YOUR “ASHLEY TREATMENT” ACTIVITIES, please call Sharon Lamp at (847) 803-3258 or e-mail Amber Smock at ambity@aol.com.

Our 2007 Organizer is Out - Finally!!!!!

2006-12-29T22:59:00.000-08:00

http://www.lulu.com/content/588361

yup - think slingshot - but for crips, with a twist of queer culture and a penchant to be irreverant...

so the book i always wanted to publish is...Still unpublished, but this is definitely a great project. Enjoy - web based or electronic versions will be created soon - the pdf is a free download!

Happy New Year
MJR

Uppity Disability dot net founder quoted about media consolidation

2006-10-20T17:21:00.000-07:00

NEW STUDY OF PORTLAND, AUGUSTA & BANGOR MEDIA MARKETS SHOWS FCC MEDIA OWNERSHIP RULE CHANGES WILL HARM LOCAL MAINE COMMUNITIES
-- Study released following revelations that FCC ordered
its own research report supporting diverse, local news “destroyed” --

PORTLAND -- Local communities in Maine will be harmed if the Federal Communications Commission (FCC) loosens key limits on media ownership, according to new research by economic experts on behalf of Maine members of the Media and Democracy Coalition. In Portland, Augusta and Bangor, the study finds that almost any merger among large media outlets will violate US Dept. of Justice and Federal Trade Commission Merger Guidelines on excessive market concentration and power. Yet these mergers would be allowed under the FCC’s proposed new rules with “no questions asked.”

The study shows that under the FCC’s proposal to loosen media ownership limits:

In Augusta, the state capital, The Sun Journal, The Morning Sentinel, and The Kennebec Journal, the major players in the newspaper market, could suddenly merge with any of the top TV stations: WCHS, WMTW, or WGME.

In Bangor, the lone major newspaper, the Bangor Daily News, could suddenly merge with one of the top two local TV stations: WLBZ and WABI.

In Portland, the Portland Press Herald, the dominant local newspaper, could suddenly merge with WCHS, WMTW or WGME, the top TV stations.

All of these resulting combinations will violate US Dept. of Justice and Federal Trade Commission Merger Guidelines on excessive market concentration and power. Yet they would all be allowed under the FCC’s proposed new rules with “no questions asked.”

“Bigger, fewer media outlets with less interest in local news would be bad for Maine citizens trying to decide if we have effective local government and good corporate citizens,” said coalition member Jon Bartholomew of Common Cause Maine, commenting on the study. “That’s bad for democracy. If the FCC proposal allowing our biggest local newspapers to merge with our biggest local TV stations goes forward, Maine citizens will end up getting inadequate choices in a news market that already ranks as too-concentrated based on Department of Justice guidelines.”
“Giving citizens a variety of viewpoints and plenty of local views are two of our nation’s most important media policy goals,” added Tony Vigue of the Community Television Association of Maine. “If the FCC allows these mergers, it will be harder for citizens to even learn about, let alone respond to local issues such as crime, schools and traffic.”

The Maine study is one of 15 state studies conducted by the Media and Democracy Coalition as part of its nationwide campaign to alert Americans to the dangers the FCC’s proposed rule changes pose to their local communities. In town hall meetings, visits with elected officials, online action campaigns, newspaper articles and op-eds, and numerous other ways, Coalition member organizations are urging Americans to tell their representatives and the Commissioners of the FCC that more media consolidation and concentration is bad for local communities and bad for America’s democracy.

The Coalition study comes out after revelations that senior FCC officials had ordered “destroyed” a staff report that concluded locally-owned stations provided significantly more local news than national conglomerates. Taken together, the FCC and MDC research studies clearly demonstrate that additional mergers in these Maine markets could significantly harm citizens in those communities, according to the MDC study’s author, Dr. Mark Cooper, research director of Consumer Federation of America, a leading expert on the structure and economics of our nation’s media.

In 2003, the FCC voted to loosen these same media ownership rules. But that decision was overturned by the Philadelphia-based U.S. Third Circuit Court of Appeals, in an action brought by coalition member Prometheus Radio Project of Philadelphia. With the FCC now again considering whether to relax or eliminate its ownership rules, this Coalition research answers the Appeals Court’s call for better analysis of media concentration in local communities. “The data clearly demonstrate that any further relaxation or elimination of media ownership limits by the FCC is not in the public interest,” added Dr. Daniel Panici, Chair of the Department of Communication and Media Studies at the University of Southern Maine.

Craig Saddlemire, producer for the Public Access Program Maine Video Activists Network noted, "This is a case of public interest versus private corporate influence. No one in Maine, or the rest of the United States for that matter, wants to see their access to art, culture, news, and information limited to fewer and fewer sources. Consolidation is good for one thing only: advertising revenue.” Saddlemire continued, “If the FCC wants to improve the climate for quality media production, it will develop rules which encourage independent and local ownership of print, radio, and television services. Diversity and competition are the keys to a healthy media system and the only ways we can ensure multiple viewpoints reach the mainstream."

Civil rights activist and video producer Mike Reynolds of Lewiston added, “The new FCC rules would hamper already marginalized voices. Media consolidation benefits just those already wealthy and powerful in our society.”

In 2003, the FCC received over three million public comments opposing its attempt to increase media concentration. MDC organizations are again urging all citizens to file comments at the FCC opposing its latest effort to loosen crucial media ownership limits.

The Media and Democracy Coalition is an unincorporated affiliation of national, state and local consumer, public interest, organized labor and media reform organizations representing tens of millions of Americans. It is committed to promoting vigorous competition, diversity of viewpoints, and localism in our national and local media. MDC accepts no corporate funding. Rather, its funding comes from foundations concerned about issues at the nexus of media and democracy. More information about the Coalition, its members, as well as these research reports, is available at the Coalition’s website, www.media-democracy.net.

“We need more, not fewer media outlets competing in the marketplace of news and ideas to help guarantee that our communities go and grow,” concluded Jon Bartholomew. “More media mergers may make media moguls richer, but local communities will be poorer.”
# # #

Our Fave Site of the Year!

2006-09-25T15:59:00.000-07:00

I totally am a fan of Getting the truth out, an response to the national autism speaks campaign. The Same Autism Speaks campaign that finds it resonsible to "Sympathetize with parents of children of autism who kill their kids because it is extremely stressful when children with autism are still in diapers at age FIVE.

Truth is stranger and appearently, more messed up than fiction.

Go check out http://www.gettingthetruthout.org

(And yes, we love Blogenberry, but that'd be way too obvisious to even post about.)

More news soon.

MJR

Adapt in DC last week - Mystery Correspondent revealed!

2006-09-20T06:41:00.000-07:00

Unfortunately we could not get to DC for the fun with ADAPT (or the House ADA Hearing, am *I* the only person that looks forward to legislative hearings with the same zeal as say, a concert?)

Oh and the mystery correspondent is Brewster Thackeray, who works for AARP, but more importantly (in my tiny mind...) whose house i conceived the idea for the movie "Million Dollar Bigot." Brewster is a great advocate for the disabiled, and it's totally awesome we got this photo.

Stream from Today's House Committee ADA hearing...

2006-09-13T16:17:00.000-07:00

Today: Wednesday 09/13/2006 - 2:00 PM
2141 Rayburn House Office Building
Subcommittee on the Constitution
Oversight Hearing on "The Americans with Disabilities Act: Sixteen Years Later"
note: TIME CHANGE--- 2:00 pm (Previously scheduled at 3 pm)

here is the link to the Judiciary House: http://judiciary.house.gov/#

This Mp3 is missing the first 35-40 minutes due to issues with the stream. Provided here as an educational purpose, under the fair use doctrine in Copyright law.

Play this mp3

Because MDA's Telethon....(deleted.)

2006-09-05T10:39:00.000-07:00

Due to a letter received thru youtube, we have decided to remove the video and the subject matter. sorry, us grassroots activists cannot afford lawsuits.

Mike R.

Check out Million Dollar Bigot's updated website.

2006-08-22T22:45:00.000-07:00

I just added some more updates to the Million Dollar Bigot website. I was interviewed for the Maine Video Activist Network's series, which screens on public access throughout Maine, and somewhere online, but I'm not sure if it is done or not. Expect some coverage of the Maine People's Alliance Medicare part D forum (and some genuine criticism about the event) some mp3's about DIY media from the Maine Social Forum, and hopefully a new layout, because, like, John Hockenberry's blog is kicking my butt, and I find that rather disturbing.

get my movie on googles top 100 videos

2006-07-25T09:17:00.000-07:00

Lewiston Maine – Michael Reynolds, filmmaker and webmaster, is proud to announce two new events surronding his documentary “Million Dollar Bigot.” The film will be screened on Saturday, July 29^th, 2006 at the Lewiston Public Library in conjunction with the Maine Social Forum Film Festival. Reynolds is also embarking on a campaign to have the film appear in the top 100 videos Wednesday July 26, 2006, on Google Video’s daily ranking, to coincide with the “Sweet Sixteen” anniversary of the American with Disabilities Act. The video can be viewed and downloaded at http://video.google.com and searching for million dollar bigot

(updated as it seems google was acting up on the original link.)

(please watch or download for sony psp or your ipod. There are ways to burn it for a DVD directly from this site, but the internet archive video may be easier.)

The video stands as one of the first grassroots based disability documentaries to been completed largely through online networking and collaboration. The inclusion on the Google top 100 daily video rankings would provide a needed focus on the struggle people with disabilities are still facinbg for full inclusion in our society.

The film chronicles the disability rights opposition to film “Million Dollar Baby” with insights from CSI Star Robert David Hall, Reporter John Hockenberry, disability publishing pioneer Mary Johnson, and many others. The film was completed with the support of the National Spinal Cord Injury Association, Not Dead Yet, and Maine Independent Media Center.

Reynolds, 32, considers this a “documentary film by accident.” While attending a conference in Washington DC, it was literally a “eureka” moment, when he realized most of the major players in the grassroots disability struggle over the movie were easily filmed. Networking with a friend who was taping with a DV camera and using his own stock footage, Reynolds set out to chronicle the disability resistance to the Clint Eastwood film.

Reynolds is also breaking new ground by working to establish a new distribution systems. Besides Google Video, the film is available through the Internet Archive. The film has been screened at the Reel Life Film Festival in Detroit, as well as an upcoming screening in collaboration with the “Dis This” film series in New York City in mid September. Reynolds will also be hosting a session on do it yourself media at the Maine Social Forum after his film screening. The media workshop will be at the Bates Mill in Lewiston.

Million Dollar Bigot, a website started by Reynolds, received international attention in 2005 before the Oscar Ceremonies. John Hockenberry graciously contributed an incredible essay, “And the Loser Is”, and the website was featured in a number of different media outlets, including Fair.org’s “Counterspin”, and Common Dreams.

About Uppity Disability dot Net.
Uppity Disability dot Net is a nonprofit web site/publishing entity promoting progressive views of disability rights and culture. Uppity Disability dot net has Resources for Organizing Social Change as its fiscal sponsor. Reynolds is 32, has Cerebral Palsy and other disabilities, and is a part time wheelchair user. Reynolds has a part time job in the teleservices field, is a graduate of the University of Maine and lives with his partner, Jim.

because we all need a cure...

2006-06-27T15:36:00.000-07:00

ARGH! Sitting in the waiting room trying to get pain relief for my broken toe (silly accident details withheld) I came across this ad for "The Cleveland Clinic" which touts implants for brain activity for individuals with Parkinsons disease. Now, granted, it is a devasting disease, but do you really need to pour over how you can not play Cholin anymore? I mean, i began to wonder if this type of technology existed for CP, Then, amoungst the rediculous amounts of stuff that has been in my inbox - maybe we just need cures, because killing kids with autism makes no sense to me, but curing my cp doesnt either. Maybe, I'm the problem, *I* need to be cured. I dont know why I was so infuriated, but dammit, when kids are being killed because their mothers feel that mercury immunizations cause autism, yet people completely disregard the autism community in general, something is wrong.
The complete other side of this debate happened a few hours earlier, while listening to NPR's Joe Shapiro interview a man who has aspergers syndrome and is proud of it. i dunno why those depictions are so few and far between. I guess seeing the ad in a hospital waiting room is just appealing to their target audience...

I dunno...

mr. broken toe - it really freaking hurts!
MJR

Links:

The Autism Hub (a www feed of bloggers who reject cures for autism)

Npr.org (search joe shapiro autism)

Not Dead Yet (for mucho info on the string of murders of kids with disabilities.)

and yeah - the photo is from my cell phone. is this the "new internet?"

uppity disability dot net goes mobile - new laptop. Publishing Empire Coming Soon...

2006-06-16T20:10:00.000-07:00

...well, Empire may be stretching it.

But a wonderful friend gave me her old laptop, it is running an ancient copy of win 95 (an yes, i AM running firefox on it...) A fresh OS, (yep, linux does run...) a couple pcmcia cards...and a usb wireless hub, and Well, we'll be doing the wifi media server. Give me a week or two. And a new head of hair because upgrading computers sucks. But no - it is really insane how cheap this can all be done, well under a hundred dollars... I hope to to explain the joys of diy media creation at a few events in the future, notably the Maine Social Forum and some sort of event in NYC in September. *I* even think i can upload video with the laptop. We will see. Tons more interesting stuff to post, like my review of 'Letters to Sam",some stuff about ssome local activist stuff and maybe a new design

Mike R.

Crip joins "Wired"

2006-05-26T07:08:00.000-07:00

john hockenberry - the crip journalist we all love...

is a contributing EDITOR for wired magazine.

which is still extremely cool.

and he did some panel with al gore last night for them.

i was going to go - but he said it wasnt worth the trip - i guess the
afterparty he would have got me into if he knew about it WAS worth the trip...

and he edits his own site, which is soooo cool...

not bitter...(i can just imagine lindsey lohan and paris hilton at
some after party with al gore and hock...well, maybe i can't - that
is a stretch...)

maybe it went like this...

Hilton: global warming is so hot...

Gore: That's actually an oversimplification...(inane sputtering about
science and how he really doesnt want to run against hillary)

Hilton walks over to Hockenberry

Hilton: That wheelchair is, like, so hot...

Hockenberry: Uh. Thanks. its like seven years old, needs new
suspension and everything...but uh thanks (completely obvious to who
he is chatting with...

Reynolds: Ummm...that's Paris Hilton.

Hockenberry: Really, oh, that's right, i've been saving olivia's old
books so i can give them to help fight illiteracy...maybe giving them
to Paris counts?

Lohan: I'm a movie star what are all these old people doing here...

Reynolds: Uh, it's the former vice president

Lohan: Wow, I thought Reagan died.

(tongue planted firmly in cheek)

some dork named mike...with too little sleep.

MJR

army recruits autistic teen

2006-05-10T17:25:00.000-07:00

note -
the only reason *I* had any idea about this story was because i was
listening to a cbc radio station - there has been very little
coverage in the us msm and nothing in the blogosphere

http://www.oregonlive.com/news/oregonian/index.ssf?/base/news/1147229743197640.xml&coll=7

what is the world coming to these days...i mean autistic recruits?
Maybe i better be glad for dont ask dont tell, , cus CP probably wont
make me a guaranteed 4F

mike r.

Million Dollar Bigot now live on google video

2006-04-14T19:03:00.000-07:00

http://video.google.com/videoplay?docid=-6312549118275450865

you can download it from archive.org as well, embed it into your
myspace acct, play it on your video ipod or psp (or even burn it to dvd)

i know there were streaming issues with the archive.org stream.
specifically synch issue between audio and video - those should be corrected...

more stuff as soon as i get a chance.

oh - go watch it or something - i am not too sure how that popularity
thing works, but i should be doing a uppity disability myspace page,
and hopefully will have mucb more stuff online soon.

and yeah, at some point i will have subtitles for the entire thing...

and yes, it should be screening at a nyc film festival in july...more
info on that as soon as we confirm a date.

dvd with covers and stuff hopefully with cool distro soon. go wild
downloading it - if you have a dvd burner and a windows based pc, i
can send you the info on how to make it a DVD.

mike r.
ps - more content soon...

The Hell of Medicaid part D

2006-02-07T14:46:00.000-08:00

The Hell of Medicaid part D
By Mike Reynolds.

Journalists are supposed to be objective, yet it is impossible for me to have any objectivity over the new prescription drug plan offered as part of the new Medicaid part D coverage. As an individual with a disability, I knew this was going to be a bit of an adjustment. The difficulty I experienced, however was totally unpredictable. I feel I did have some benefits; my best friend is a technician at the pharmacy where I get my medications. I have worked in the insurance industry, and I would like to think I advocate for myself effectively. All of these assumptions would be tried in my mind in the month of dealing with part D.

I should preface this with the fact that I did go through a medicine change that was unexpected and unrelated to Medicaid. I am disabled due to Cerebral Palsy (CP) and also have a diagnosis of Panic Disorder. The CP is due to a difficult birth, my Panic Disorder was diagnosed when I was 15, though I know I have had it from a very young age, I think my first panic attack was at 7, which wasn’t considered plausible when I was growing up. I need various durable medical items to get through the day, but since this law did not affect DME, there is no need to really discuss the entirety of those needs.

I tried to get a drug I was out of on December 30th. But there were some complex issues with my doctor’s office, the drug was never refilled, and I found myself without it for a week. This drug was a form of neurontin, which I was taking for post surgical pain and spasms, which had been treated with physical therapy. I had some of my Lexapro, which I had used for years to help with my anxiety issues, in conjunction with a script for klonoprin, a drug I have been on since I was 17.

On January 3, I went to go get my klonoprin refilled. I had my part D card from a company, which, I guess was better than some folks, who did not even receive any information in the mail. I also have since learned that this was the program the government threw me into, without looking at my medicines at all. My friend informed me that no drugs in the same class as my klonoprin were covered by any plan. My neurontin drug was to be picked up at my doctors office as it was also, not covered without some lengthy paper trail. This had already taken a couple of hours, and as I was going home, my friend called my cell phone and let me know that my Medicaid was also somehow cut off. This was more than 2.5 hours after “just trying to get a script refilled.” It took an hour to go to the Human Services office and get my Medicaid re-instated. It was discontinued due to a computer error. I received a letter and was told by the pharmacy I could get my drug refilled in 3 days, luckily I had enough to last those 3 days. I went home exhausted, physically, spiritually and mentally. I am usually a pretty resilient person, but this had left me wiped out. I was left wondering why part D didn’t pay for meds I needed to stay sane. Was I some sort of horrible person for needing the medication? Was it a frivolous drug expense? I went to sleep early, my partner looking in on me, as I seemed a bit distressed.

The same week my body went into crash mode, or just basically deciding it would not cooperate with what a 32-year-old body should do. I had lost bowel control, something that has happened before but after the third day of “oops,” my partner decided that maybe an ER visit would be advisable. I had no idea why my lower half of my body just stopped and said to my brain “He, you thought you had control of us, eh, well, we’re rebelling, and you can’t stop us.”
The ER visit sucked, most do, but this even more so. Instead of my neurological impairment being the main focus, my sexual preference was somehow more important. The ER attending ruled it a bout of diarrhea, a dubious diagnosis because I know my body, it wasn’t that, but after four hours in the ER, I could care less, I just wanted to go home.

I decided to see my general doctor. He was on vacation, but I got a script and the need to try and get on a bowel program seemed to iron things out. My doctor came back and decided to change my anxiety meds to see if a different combo worked. It did, but a bit too well; I was constantly tired and stopped after a couple weeks.

My disability does have some effects on my body that are less than desirable, but after the runaround I have dealt with part D of Medicare, I cannot see how this drug benefit really helps anyone except insurance and drug companies. I mean I am glad I have coverage, and I am glad Maine is one of the states that made sure that there was some stopgap protections. Certainly I cant be the only one with these problems, but after the amount of bureaucracy, I can only imagine how other people who may not have the education or background, or a good friend who knows the benefits from working in a pharmacy and was helpful enough to tell me that my Medicaid was cut off, which probably saved me time by getting it all done in one day. So I guess I’m frustrated, but overall, not hurt by Medicare part D. I just hope they don’t plan on doing this to DME supplies or it will be an enormous headache.

Jerrys orphans in Chicago - With Edited Audio

2005-11-17T16:21:00.000-08:00

Orphans in Chicago shut down Lewis

On Wednesday night, 12 disability activists shut down a speech by MDA telethon host Jerry Lewis. While many sites are reported that the disabled protesters may have "walked out and drove home" This is a bulls**t lie. Lewis is extremely RUDE to the folks, and shows even more of his hatred to all things "crip." Yeah, we know who led the protests, no, noone was arrested.

Lewis censored himself by refusing to address the crowd, It is rediculous to say he cares about his kids. I think is is really rediculous when Jerry Lewis Fans are so blinded by their own ineptitude to consider MS a "type of MD" and "well my mother used a chair as she was elderly" as definitive knowledge of MD, or having a loved one with MD.

Folks - My best friend had MD, as did over a dozen of my closed friends (THE ONLY downside to crip summer camp.) So do not even try to get into an argument about the merits of criticizing Lewis.

-Background

http://www.geocities.com/chicagoadapt/9-12-jerry.html

http://webhost.bridgew.edu/jhuber/readings/mda_telethon.html

http://www.raggededgemagazine.com/extra/jerrylewis052401.htm

http://www.raggededgemagazine.com/archive/jerry92.htm

http://www.ragged-edge-mag.com/sep97/drnat9.htm

http://www.cripcommentary.com/LewisVsDisabilityRights.html

-September 2, 1990 Parade Magazine Article

http://www.cripcommentary.com/parade.html

-Jerry Lewis Fans

http://www.jerrylewisfans.com/lofiversion/index.php/t349.html

-Alternative to MDA

http://www.mdff.org/

-The Kids Are All Right

http://www.thekidsareallright.org

special ed supreme court ruling

2005-11-16T10:02:00.000-08:00

I am not sure why this hasn't been on MORE listservs, but the supreme
court ruled on the case monday, against parents of students with disabilities.

http://www.nytimes.com/2005/11/15/politics/15scotus.html?pagewanted=1&th&emc=th

is a NY Times story that details the decision.

This case was argued the same day as the Gonzalez vs. Oregon
case. When I listened in to the hemlock type folks, after the case
was argued, they expected an early decision.

John Roberts did not vote on this case, as his law firm was involved
with the case.

If someone wants to find the ruling - i would definitely like to see
the opinions as they were written...

Mike Reynolds

Why Disability Film Fests ROCK

2005-10-21T01:44:00.000-07:00

By Mike Reynolds
Uppity Disability dot net
As a disabled activist, I have been granted a tremendous amount of opportunities that I would never have had I been, dare I say it, able-bodied?

I’ve run a website for over a decade, produced two films and written for a number of publications. I have screened my films at national conferences and had the opportunity to work with amazing, brilliant and committed activists on a wide range of disability, civil rights, and to a lesser extent queer politics and independent media.

But there seems to be a void – The need for a “disability cultural experience.” I don’t mean going to conferences, or reading all the major websites and blogs. I mean a revolution in the way we look at our identity. Other minority cultures have successfully made the leap from marginalization by the mainstream to solid minority identity. One only has to look at the proliferation of film festivals by other minorities to see troubling facts.

There are literally dozens of gay and lesbian film festivals, and as an out gay male, I would like to think that my work would be accepted in the genre, but, really, right now – it doesn’t translate –My first film was not at all geared to a broad audience. My current film is a bit more accessible. But how many disability film festivals are there?

In the US – there are currently 3. Superfest is run out of Berkeley CA, and gets the major hitters like PBS submitting films. That’s not exactly pleasing for a disabled filmmaker with a camera, tripod and video editing software. There is a second festival in New York, but the details escape me at the moment. The final film fest, where an excerpt of my film, Million Dollar Bigot will screen tonight is the Reel Life Film Festival held near Detroit, MI.

A production of Susan Fitzmaurice, it is one of the few outlets for disability specific films to be seen. While there are dozens of say, gay and lesbian film festivals, where directors can sort of garner a buzz before trying to submit to a major independent film fest, like Sundance. Without that cultural structure in place, and with prevailing attitudes in our culture that already marginalize disabled voices, The Reel Life Festival is not only a needed resource, it is literally a lifeline for indie crip filmmakers who do not want “permission” to voice their opinion on video. Reel Life and the other film festivals are providing an essential service – giving disability filmmakers an outlet where a under funded film probably done late at night on the same computer that is also responsible for reporting, writing or research. In other words – the filmmakers who look for tapes on clearance so they can film their masterpiece for the world to see.

Susan Fitzmaurice is a true pioneer and hopefully will be noted as such in the annuals of disability culture. Besides this groundbreaking festival, she has led the dissemation of information for victims of Hurricane Katrina on the Internet. She has recently received an Advocate of the Year award from the World Institute on disability, as well as running numerous other websites, and living a full life. It is folks like Susan Fitzmaurice that gives this crip indie film dork hope that disability perspectives will possibly be less than a marginalized voice in the media.

supreme court action - a review...and rant...

2005-10-05T11:39:00.000-07:00

I received word from Carrie Lucas that the disability activists totally outnumbered the pro death (and that IS what they are, it is rather pathetic, if I do say so.) by about 4 to 1. I listened to compassion in dying's briefing (it was free and advertised) They just seem so full of themselves.

Lets review the facts.
1. The last assisted suicide referendum was lost. After they paid millions of dollars to lobby for it's passage. They have been saying 80 percent of the public favors assisted suicide. Hrmm, I guess it is easy to bullshit the public when they are uninformed. Or Maine doesn't count????

2. The highest suicide rate for individuals in Oregon is elderly men. Hrmm, probably folks who lose bladder control after prostate cancer, have little or underfunded insurance, and dont want to be burdens to their families. Incontinence is never really spoken about in the US. In Europe, there is free medical care, and surprisingly good products for the issue. The final point is that isnt it easier for a doctor to sign a death with dignity script than have to worry about HMO quotas, medicare repayments or insurance payments?

3. Barbara Coombs Lee used to head a HMO. Creepy isnt it? She, Peter Singer and George Felos (Michael Schiavo's attorney) are the creepiest individuals i have seen. that doesn't have much to do with anything. more info soon.

[assisted suicide]
[disability]

NDY Day of Action 10-5-05

2005-10-05T08:14:00.000-07:00

10-05-05

A Day of Action at the Supreme Court

On a bitterly cold day in January, 1997, hundreds of disability rights
activist plowed upon the Supreme Court to oppose the legalization of assisted
suicide. It was my first national action and it still is one of my favorite
memories. I couldn't make it to DC, (blame fatigue, but also there was a
severe stoppage on amtrak yesterday, so I would have probably missed it
anyway.)

More info soon - check the blogger link up top.

and ck out not dead yet.

looking for our previous update? Wanna buy our
new DVD?

For Disability related infoon ways to help the Katrina victims,
please check out Susan Fitzmaurices website

Katrinadisability.info

2005-09-13T23:26:00.000-07:00

bioethicist uses academic freedom to espouse views against disabled at Bates
a rant by mike r.

I'm tired and frustrated beyond words and well, given i ended up in the hospital yesterday in the AM, was really unable to do anything yesterday.

A professor spoke about euthanasia, it was an "academic" debate. It was at the "Progressive" college campus of Bates College. Peter Singer is not progressive. I've seen him several years ago in portland. i found him eerie then, and well, i was too ill to consider attending last night.

This isnt about abortion or other issues - this man, (and YES, I have read ALL of his works, Just because he has great views on distribution of wealth or animal rights, does not make his points on infanticide any less disturbing.)Yes, we are discussing killing children already born about a month old due to their disability. This is academic freedom? No, in any other forum, it would be considered hate speech, but since Bates allows curricula to continue (an discussion earlier this year where members of the maine bioethics network were called to task for not having a disability perspective, met with the response that i did not "have a medical background" Yes, i guess doing insurance claims, being a personal care attendant for my partner and several other quadripledic men, spending the past decade attending conferences, and medical trainings and written a film about end of life decisions, produced a movie about the assisted suicide referendum, spoke at events and written nationallly published articles, doesn't really give me ANY medical experience,)

Why are we so quick to jump aboard a referendum campaign that most g/l/b/t/q folks i speak with find to be irrelevent, if not even setting the movement back in time. Without equal marriage rights, the referendum is nothing more than a compromise that the governor has conjoured up with a group of STRAIGHT ACTING upper class gay men and lesbians to address their needs.

The referendum does nothing to protect me - today, i have more solid ground to stand on legally, given the fair housing act wording or marital status? Why change something that for all legal purposes, doesnt need changing.

The referendum is not going to change the fear two men have walking together in certain rural parts of the state. the referendum wont make homophobia go away, or lessen the likely hood of hate crimes against gays and lesbians. I know, i've been threatened with physical violence for the t-shirt i wore once.

Why do we focus on the media hyped oppression, but not the speeches of a man who has been the basis for animal liberation terrorism? Why arent we looking at dafur? and the history in Rwanda, or Somalia, so we dont repeat the same mistakes, or have a more meaningful discussion about the problems of africa be more than "well bob geldof told me that it is all the debt..." It is that - but it is sooooooo much more. I would love a native african perspective on that. I think that would be a better use of resources.

I'm just a radical queer crip, who spends too much time worrying about katrina victims - producing documentaries and social justice and civil rights stuff done.

what do i know...

not a slam, just something to ponder.
mike r.

*sorry - i don't want comments*

Musings from the depths of the editing room

2005-07-07T20:12:00.000-07:00

Hi folks-
After dealing with quite a bit of physical issues, probably brought on by
the panic attacks that have been worse through out the week, it seems the
million dollar bigot dvd is finally taking shape. It is due to be shipped
soon and finally in the hands of custom flix (http://www.customflix.com), a
fairly cool and very indie film-maker friendly distro - it isnt hollywood -
but it's somewhere in California, and really, I dont want a big budget
hollywood picture. Heck - with a minimal budget - I have 2 emmy
awardwinning folks and several of the major players in the disability
rights movement.
I'm thrilled right now - because after lots and lots of editing snafus,
trying to figure what works, i had my "This is really coming together"
moment tonight. I'm scratching some ideas (the south park animated versions
of steve drake, john kelly, and greg smith will have to wait) but some
stuff just really illustrates this entire battle the community went
through. I distinctly remember calling my friend Dave at like 1 am after
missing murderball in DC at the NSCIA summit. It was just so obvisious to
me that the NSCIA summit had soooo much to offer and why not agirtate clint
a little bit more (Interesting info - Eastwood was rumored to show up at
the Maine International Film Festival - well, Eastwood isn't scheduled, but
ummm, some loudmouthed crip kept bugging the festival to get this movie
that i heard about and posted on one of my fave listservs. So ummm,
Murderball is opening the festival next Friday. as Peter Griffith would say
"Freakin Sweet"...
I do make a brief appearence in the film - but only cuz i'm interviewing
folks...Maybe it is crazy to think some thirty something uppity disability
guy can make Eastwood squirm...visibly. That's my goal. I am really glad i
have done a film before - i keep worrying it is too shorty but i know my
biggest problem with the last film (besides too much of me and it being a
kinda obscure topic - i needed a paragraph to explain the topic to folks.
This - it's one sentence...

It isn't done (and i am horrid with predictions...tho i do have it all
proetty much storyboarded - a couple loose ends and stuff to do - hopefully
it be a good production. The list of folks are too long to thank and i am
tired and thought i'd just let you all know it is getting there. as for
copies - i plan to blitz media and disability media, maine media - heck -
why not the NY Times. maybe this will be seen as edgy and the next big
thing - honestly - it is totally wierd because i just keep thinking of this
wierd journey this past decade my website (TEN YEARS THIS MONTH!!!!!) and
how this is like all those previous projects or offshoots - the ones i
thought were gonna be huge - weren't - the ones i thought were just too
funny or wierd or that no one would get - soared. Heck - this was all
prework for an honors thesis - i also had a trip to some off-broadway play
- "Spokeman"* as part of that same thesis...wierd...

It's getting late - and i really want an early start tomorrow...

Mike R.
</rant from a disabled activist geek>
8^)

Cellactivist

2005-06-25T00:10:00.000-07:00

Ok, i can post from my cell. Cool. So i can update stuff and not be near a 'puter ! Webcasting just got easier! - mjr

TN ADAPT Update

2005-06-24T21:38:00.000-07:00

ADAPT in TN
Spoke to RandyAlexander a 1/2 an hour ago - he is currently not in the governor's mansion, the cause being the governor's folks would not allow food to be brought in for all the people to last the weekend. 5 people are staying with the food and snacks they have already brought in. Randy stated they were getting a large amount of local media - some national media - not much - and that nashvillepeacejustice.org may have some sort of email listserv. He seemed pretty busy/preoccupied and I told him that I would give him a call tomorrow - maybe talk to the people still in the Governor's Residence.

Mike R.

more info

Memphis CIL

A review of "Staring Back" October 1997

1997-10-17T18:53:00.000-07:00

A review of “Staring Back”

By Mike Reynolds

Maine Campus Staff

A culture is defined by the literature it produces. As a minority group, people with disabilities have, historically, been defined by what non-disabled people have written or spoken about them. Recently, the literature of people with disabilities has been in the spotlight of popular culture with the Oscar winning film “Breathing Lessons” by Mark O’Brien, and with “Moving Violations”, a memoir by John Hockenberry.

The writings of O’Brien and Hockenberry, and over 30 other writers are featured in a new anthology, edited by Kenny Fries titled “Staring Back: The Disability Experience from the Inside Out” The book is published by Plume books.

Fries thought of the idea of an anthology after attending an forum on disability and performance art in 1994. “I put out a call for submissions,” Fries stated in a phone call from his home in Northampton, MA Thursday afternoon. “A great deal of time was spent reading, I wanted to make a book that was strong literature, and to worry about any message later.”

“Staring Back” is the latest work from Fries, whose disability is due to missing bones in his feet. Fries wrote very honest and openly about the struggles he felt as a person who was not only disabled but gay in his 1996 book “Body, Remember” which tells a powerful tale of abuse, recovery , and life.

Fries is promoting the book heavily, with a book tour that begins soon and will hit Boston on November 20th. “I hope the book can be used as a text book for a disability studies class,” Fries added, “ hopefully people will be compelled to read an anthology completely written and edited by writers with disabilities.”

“Staring Back” covers a broad range of writing, including nonfiction, poetry, fiction and drama. The writers involved have a diversity of physical disabilities and present a wide spectrum of perspectives.

One of the contributors, Jean Stewart, who currently resides in Northern California, used to work at the University of Maine in the Department of Botany.

In 1970, Stewart formed a writers group at UMAINE “which lasted for several years”. Stewart continued from her home in California. “It was a small group of students and faculty. Steve King was it before he got his first story published. Burton Hatlen was very active as well as Jim Bishop.” She also stated that Stephen King’s future wife, Tabitha Spruce, was a member as well.

“I just received my copy yesterday, but it looks wonderful, the book covers a lot of territory.” Stewart said when asked about the book. Stewart submitted a work of fiction for the anthology. The story, “The Interview” deals with the process of interviewing a prospective personal care attendant.

The book has many authors Stewart knew and respected. “I really enjoy Adrienne Rich, she speaks her beliefs clearly.” Stewart commented. Rich, who was awarded an honor from President Clinton, publicly refused the award. Rich has an excerpt from her work “Contradictions: Tracking Poems”.

Other writers are equally honored to appear in the anthology. Mike Ervin, a writer and journalist from Chicago thought “It was amazing” to be between writers such as Stanley Elkin and Ann Finger, both of whom are noted writers in literature as it relates to people with disabilities. Ervin is a regular contributor to several disability magazines.

“Staring Back” does cover a great deal of territory. Many of the writers are some of the most eloquent voices for the rights of people with disabilities. Jean Stewart is a pioneer in the area of rights of prisoners with disabilities. Fries is a strong and eloquent voice telling the world about the experience of being disabled and gay.

“I hope this helps people with disabilities realize that they are not isolated,” Fries added, “I never had this type of writing when I was growing up.”

“Staring Back” is a wonderful volume of art which is worthy of many hours of solitary, uninterrupted reading. “I hope this anthology will viewed as disabled literature having credible literary value, not as therapy” Fries said. There is no doubt that “Staring Back” will be a anthology that will stand up to any contemporary literature being published today.

---
This was in the Maine Campus, sometime in october of 1997...
Mike R.

1997-03-28T23:02:00.000-08:00

Monday night, in a major departure from history, The English Patient, an independent film made by Miramax, captured nine Oscar Awards. This year, the only one picture nominated for best picture was produced by a major film company. This lent many criticics inside and outside of Hollywood to call this year “The year of the independents”

If this is indeed the year of the independents, the words of Jessica Yu, an independent filmaker with Inscrutiable Films and winner of Best Documentary - Short Form accurately summed up what many independent productions have to deal with.

“I don’t know which cost more, the dress to wear to the awards or the film”, Yu laughed to a estimated television audience of one billion. Yu’s winning film Breathing Lessons: The life and times of Mark O’Brien.

The film received much of it’s budget from grants Yu wrote. Additional money was provided by Pacific News. “A great deal of the money was pocket money” Yu stated. The film took almost a year to complete and was premiered in December 1995.

One of those watching Monday night was O’Brien himself. “It was terrific that Jessica won,” stated Mark, in an interview on Tuesday afternoon.

And Monday night, while many winners and losers from the awards were going to sheik Hollywood parties, O’Brien was hosting a small party with eight to ten people in his apartment. O’Brien stated that one of the high points was when Jessica called after she won.

“I went to sleep quite late” O’Brien laughed.

Asked if there was any truth to the comments Yu stated about the production cost, O’Brien laughed, “It was just a joke, Jessica made her money back from Cinemax.”

Breathing Lessons is a half hour documentary of the life of Mark O’Brien, a journalist for Pacific News Service and poet who now lives in Berkeley, CA. O’Brien writings are works that are worthy of attention by themselves. But the source of O’Brien’s work take on a story of it’s own.

The film does cover many subjects with an offbeat view. O’Brien’s own writing is described as brutally honest, funny and from a refreshing point of view. Some of his stories, such as one that he wrote about seeing a sexual surrogate, which he candidly descibes in one of his stories. “I guess it’s an occupational hazard.” O’Brien joked when asked about his frank style of writing.

Breathing Lessons will be making it’s debut in Maine next Thursday. As part of Disability Awareness Days, the film will be shown at 7 pm at 100 Neville Hall.

One unique aspect of this showing is that there will be a phone connection established to talk with Mark, as he is unable to travel due to his dependence on an iron lung. This will be the first time any audience will be able to interact with Mr. O’Brien directly after a showing of a the documentary. “I feel like it’s an honor” O’Brien stated.

This article originally ran in the Maine Campus on 3/28/97.

Mark O'Brien Interview

1997-02-26T22:53:00.000-08:00

Breathing Lessons offers insights into Independence
by Mike Reynolds
This article was originally published in The Maine Campus on 2/26/97

When the Academy Award nominations were announced at 4 am Pacific Time on Februrary 11th, the biggest story was that neither Madonna nor Courtney Love were nominated for Best Actress. The other story that seemed to be covered endlessly was the amount of awards “The English Patient” had been nominated for, yet it only began showing relatively recently in Bangor, probably as a result of the numerous nominations. There were many stories that seemed unworthy of mention because their category was not “popular”

The Academy of Recording Arts and Sciences has over 20 separate catagories to recognize everything from Cinematography to Makeup. Many of the movies nominated are films popular culture hasn’t even heard of.

The Academy Awards are the biggest event in Hollywood. People worry about “who will show up in what dress by what designer and did it cost several thousand dollars?” The members of the academy all are respected in the motion picture field, their peers are the people nominated.
The Academy Awards are also, to a lesser extent, a showcase for independent filmakers, foreign films and other non-mainstream films. While film festivals such as Sundance may showcase the cutting edge ideas of young filmakers, The Oscar Awards give these independent filmakers a world wide audience to hear if their low budget works are worthy of the recognition that an Oscar may bring.

One category that illustrates this is Best Documentary - Short Subject. This year, five films are nominated, one of them Breathing Lessons: The life and times of Mark O’Brien, was directed by Jessica Yu.

“It is one of the best recognitions to be nominated,” said Yu, in a phone interview, when asked about her nomination.

Mark O’Brien is a 47 year old writer who, since the age of six, has had to use an iron lung to breathe, as a result of childhood polio. He is one of an estimated 120 people in the world who is dependent on such a device. O’Brien’s life, experiences and poetry are at the heart of Breathing Lessons.

Answering the phone, O’Brien’s own voice sounds like a answering machine, one can hear the breathing over his voice which is over a speakerphone. When asked his reaction about the Oscar nomination, O’Brien stated, “I did not think we were even eligible, I was very suprised.”

The idea of a film came to light when Yu, had just covered a film festival for Pacific News. “The editor told me I had to meet this reporter, I was hesitant because it seemed like a heavy, serious story.” Jessica continues, “Yet when I first talked to Mark, I knew I could do this.” Yu’s described her previous films as “funny and kind of off beat.”

The film does live up to those adjectives. O’Brien’s own writing is described as brutally honest, funny and from a refreshing point of view. Some of his stories, such as one that he wrote about seeing a sexual surrogate, which he candidly descibes in one of his stories. “I guess it’s an occupational hazard.” O’Brien joked when asked about his frank style of writing.

When asked what was the most anticipated moment was, Yu immediately responded “The two days after I sent it to Mark to see it. I was walking on eggshells hoping he liked it.”

The film is a honest potrayal of O’Briens life. The film opens with his poem “Breathing”.

Grasping for straws is easier You can see the straws This most excellent canopy, the air, look you Presses down upon me At fifteen pounds per square inch. The film continues , with memories of his childhood before the onset of his polio, and how his parents decided to bring him home rather than place him in a nursing home, where the average life expectancy was only 18 months.

The loss of a younger sister to pneumonia gives way to another one of his poems, with the line I was the one who was supposed to die , making it one of the most memorable lines of the film.
O’Brien did spend two years in a nursing home, years he frequently refers to as horrific and terrifying. He was tutored at home as a child, excluded from the public school system. As it would turn out, his way out of the life he deplored was by attending college in Berkeley, CA.

The film is a funny and emotionally moving tale. This is not a story about a hopeless person with a disability, it rather serves as a document of how one person’s life he has choosen to lead, despite various factors that have made it like it is.

The film has received numerous awards already, with awards and selections from such acclaimed film festivals and associations such as the International Documentary Association, the South by Southwest film festival and The Sundance Film Festival.

Because of problems associated with his disabilitiy, O’Brien is only able to get in his wheelchair twice a month, Yu went to the numerous screenings all over the continent and brought a book which viewers could write messages to him. She gave the completed book to O’Brien last Christmas.

O’Brien will be watching the Awards show at home, he probably will have a party with his friends. Yu will be at the awards having a good time at the ceremonies.

O’Brien’s is currently working on an autobiography to be published in the fall. The film is also slated to be shown on the cable network, Cinemax, tentatively scheduled for May 22nd, as part of their “Reel Life” series.

“I don’t care if it is sandwiched between Police Academy 1 and 2, as long as it is on,” Yu commented.