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

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

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

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

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.

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

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.

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.

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.

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.

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.