Saturday, September 29, 2007

More Support Against the "Ashley Treatment" in Delaware

Recently, the University of Delaware's Center for Disability Studies Advisory Panel voted to support a statement of solidarity against the Ashley Treatment. The snowball of support against the treatment continues to grow! This info comes from Daniese McMullin-Powell, who noted that the vote actually passed by a slim margin (8-7).

McMullin-Powell also notes that one of those who voted against the statement is a CIL director. She says, "Shame on the Director of Freedom CIL in Delaware who voted NO on the solidarity statement concerning Ashley X!!! She should be removed!!! She does not deserve to be a part of an organization that stands for people with disabilities in making choices in their own lives. Shame on that woman for voting that caregivers should be making those choices for us!"

The situation in Delaware is a call for a reality check. CIL staff everywhere should note that this past July, members of the National Council on Independent Living voted to support a statement of solidarity against the Ashley Treatment. The basic philosophy of independent living maintains that we, people with disabilities, are the ones who should be making decisions that affect our own lives. If that is not the viewpoint of your CIL, you aren't working for one.

In the case of those who cannot communicate for themselves, the American College of Obstetrics and Gynecology's recommended policy is not to interfere with a person's body unless they are in danger of grievous or mortal harm. In other words, don't fix it if it ain't broke or dying.

Friday, September 28, 2007

Go girl!

Karen Gaffney has swum across Lake Tahoe, the nation's second-deepest lake. Gaffney, who is 29, and from Portland, has become the first person with Down syndrome to swim the nine-mile distance from the Nevada shore to the California shore.

Her time: six hours, 15 minutes.

As noted in Monday's post, Gaffney is an avid swimmer whose accomplishments include swimming the English Channel on a relay team in 2001, and the swim portion of the rigorous Escape from Alcatraz triathlon in the San Francisco Bay.

Gaffney, who is a graduate of Portland State University, and now works for the Karen Gaffney Foundation, which she helped start at Portland State, made the swim to raise money for the National Down Syndrome Congress, a non-profit organization that raises awareness about Down syndrome.

"I really hit a home run on the swim," Karen said, after completing her swim on Tuesday. "I really made a lot of people proud."

Way to go, Karen!

For more coverage of Gaffney's swim, see here, here and here.

Wednesday, September 26, 2007

Model with Asperger's on America's Next Top Model

In case you haven't already heard, the reality TV show "America's Next Top Model" features a contestant named Heather who has Asperger's syndrome. You could have knocked me over with a feather because I found this out just by flipping channels over dinner! Feminists reading this blog may have varying perspectives on the profession of modeling and why people actually watch ANTM, but regardless, Heather's a fellow woman with a disability taking a step outside most people's comfort zones. So Heather, good luck to you, and here's hoping that your fellow contestants and American viewer learn a few things about people with behavioral differences. FYI she made it through the first round with very positive comments on her modeling from the judges (and snarky immature comments from some of her fellow contestants---Heather, tell those girls a thing or two about why diversity is okay!).

If you would like to know more about Heather, the link to her contestant page is below.

Monday, September 24, 2007

Frida Feminist-Disability Links #6

This week in the news:

Sheriff's officials in Tustin California claim that their use of a Taser stun gun to subdue an autistic teenager, who left a social services center where he was being treated, was necessary. But not according to his parents, who say they overreacted. Full story here.

In another disturbing tasering incident, a 56-year-old woman in a wheelchair died shortly after being shocked ten times for a total of 165 seconds with a taser gun during a confrontation with police. As reported in this article, officers say they arrived to find the woman, who also had a documented mental illness, armed with two knives and a hammer, which, according to the officers, she was swinging at family members and police. A medical examiner found that the woman died from hypertensive heart disease and cited the Taser gun shock as a contributing factor. On her death certificate, the medical examiner ruled Delafield's death a homicide.

Anger as airline refuses to fly double amputee disability activist, Carla Luis. According to this report, the Portugese airline TP pilot told Luis that she could not fly without a medical certificate or a companion. Although several passengers offered to accompany her, and Luis pointed out that she was not sick, the pilot refuse to take off and she was forced to take another flight.

A woman with epilepsy, who was bullied and called a "silly little girl" who "lacked a business brain by two company managers at Estee Lauder, where she worked, has setted her case with the firm after winning a tribunal claim for direct discrimination, disabaility discrimination and harassment. According to this report, Estee Lauder has apologized for what happened, told the woman that her job is still open to her, and that it will change the way it trains its managers so as to avoid bullying in the future.

Here is link to an article about disability activist Eli Clare. In it, Clare discusses his most recent work The Marrow's Telling, which will be available this month. Dedicated to the work by and for trans and genderqueer men, the Marrow's Telling is a collection of prose and poetry that examines embodiment, and in particular, the physical ramifications of Clare's cerebral palsy, rural upbringing, gender transgressions and his traumatic and abusive childhood. Clare is the author of 1999's Exile and Pride: Disability, Queerness, and Liberation.

A link here to an article about Disability Action Movement Now, a new disability rights organization in Ontario, Canada. Officially known as DAMN 2025 (which reflects the target date to make Ontario barrier-free), the group brings together groups from across the disability spectrum.
Karen Gaffney will swim across Tahoe tomorrow

Karen Gaffney will swim accross Lake Tahoe tomorrow starting at 5.3am.

Gaffney, who has Down syndrome, started swimming at 9 months old. She is an accomplished athlete who has swam the English Channel as part of a relay team in 2001 and has swum the San Francisco Bay seven times in training for triathalons.

"I'll be thinking about keeping my pace and speed while I'm swimming," Gaffney said.

The swim is expected to take about nine hours and will start on the east shore at Dead Man's point, and will end at Sugar Pine Point on the west shore.

Gaffney, who is a graduate of Portland State University, and now works for the Karen Gaffney Foundation, which she helped start at Portland State, is swimming to raise money for the National Down Syndrome Congress, a non-profit organization that raises awareness about Down syndrome. To help support the organization, go here.

NBC's "Today" show is expected to cover Gaffney's swim live during its Tuesday morning broadcast.

Friday, September 21, 2007

The AMA Five
Believe it or not, months after our February 20 meeting at the AMA, a photo has turned up of the five of us who met with the AMA CEO and Chairman of the Board. Standing, left to right, are Rahnee Patrick, Amber Smock, Donna Harnett and Donna Shaw. Seated is Diane Coleman. We are inside the lobby of the American Medical Association. Enjoy. Thanks to Gary Arnold for making sure we got this image.

I think this is our first FRIDA image...partly due to the fact that I've finally figured out how image upload works.

Community Choice Act: Help Needed

Via Adapt:

The hearing for the Community Choice Act, CCA, (S. 799) in the Senate Finance Committee is September 25th. That's NEXT TUESDAY at 10:00 AM in the Dirksen Senate Office Building, Room G-50.

We want to make sure ALL the Finance Committee members attend the hearing; sometimes only one or 2 are there. The more we can get to attend, the more will learn about the bill and these issues.

We need your help to ensure that as many as possible of the Senators on the Committee attend this hearing. Please contact them and ask them to attend. Let them know why you care, and ask them to support the Community Choice Act S. 799.


MAX BAUCUS, MT (Chair of the Committee)
CHARLES E. SCHUMER, NY (co-sponsor)
KEN SALAZAR, CO (co-sponsor)


CHARLES GRASSLEY, IA (Ranking Minority Member)

Senate Finance is the "committee of jurisdiction" for the CCA in the Senate.(That means they are the committee that will decide about the bill moving onto the full Senate for passage.)

Monday, September 17, 2007

FRIDA feminist-disability links #5

News and views to catch up with:

It's reported here that a woman in a deep coma woke up after doctors removed her life support. After having a pacemaker implanted for her heart condition and spending time in rehabilitation, she describes her post coma condition as pretty great.

It is reported here that women with disabilities have fewer clinical breast exams and fewer mannograms than nondisabled women. One national study found an 11 percent gap.

Australian euthanasia advocates have modified an ordinary coffee pot which they say will enable the terminally ill to concoct a banned suicide drug in their own kitchens. For more details, including an overview of a five-minute video about the procedure, go here.

Globe correspondent Erin Conroy reports here on the controversy that has resurfaced over the use of skin shock treatment and aversive therapy at Judge Rotenberg Educational Center. As reported by Conroy, an article about the Canton-based insitution, dubbed the "school of shock," has reignited efforts to pass legislation limiting the facility from giving children electric shocks as a form of treatment.

Here is a link to a the details about a new talk show on Disability News Radio for parents and caregivers of children/adults with special needs. The show will be broadcast every Wednesday at 1.30pm ET.

On Wednesday last week, transplant surgeon Hootan C. Roozroh pleaded not guilty to two felony charges related to his unsuccesful attempt to harvest Ruben Navarro's organs last year at Sierra Vista Regional Medical Center. He was charged in July with three felonies: dependent-adult abuse, administering a harmful substance (Betadine) and unlawful prescribing of a controlled substance (morphine). Read More...

Via Lawrence Carter-Long, Director of Advocacy Disabilities Network of NYC, a link to the findings of a report about the self-representations and expectations of youth with disabilities, how they differ across disability categories and demographic groups, and how they compare with youth in the general population. The study, funded by IES, was initiated in 2001 and has a nationally representative sample of more than 11,000 students with disabilities.This report presents findings drawn primarily from telephone interviews or self-administered mail surveys collected from youth when they were ages 15 through 19.

A guest columnist in The Minnesota Daily describes how her perspectives about people with disabilities were transformed after becoming a personal care attendant. Read her column, called Disability: A Social Construct, here.

This story from NPR, by Joseph Shapiro, reports on the inaccessibility o f medical care to people with disabilites. It includes advice on what people with disabilties can do to to get proper access to health care.

In this article from the New York Times, Frank Brunin reflects on the unwelcoming nature of certain "accessible" restaurants in New York City.

Friday, September 14, 2007

FRIDA Report from the ADAPT National Action in Chicago

As if there aren't enough comments on the web regarding the ADAPT National Action this past week, I'd like to add a FRIDA perspective. As you know, FRIDA is currently Chicago-based and FRIDA members were extremely excited to be part of the National Action. Many FRIDA members are also longtime ADAPTers.

First, thanks to all of you who attended and bought FRIDA tshirts and buttons from our table, and met FRIDA members (and their kids, smile). Look closely at pictures of the action and you will see FRIDA tshirts here and there throughout the crowd. IN SOLIDARITY, FRIDA Fighters!
This post will be about my personal experience with the action this week, and it's gonna be long, so bear with me. Not only am I a member of FRIDA, but I am also currently secretary for the Chicago chapter of ADAPT, and helped to mobilize our folks in Illinois who came. To those of you who attended from the Land of Lincoln, thank you! And to all my ADAPT friends who came from across the US to our city, thank you.

Saturday, September 8

Today, ADAPT blew into town! My best guess is about 150 people came in through Midway and O'Hare airports. Many drove in via car or bus and another big batch came in through Amtrak at Union Station. We had reportedly 39 states represented and my best guess on the final head count is somewhere between 400 and 500 participants, most of whom stayed at the Crowne Plaza Hotel on Madison.

My job today was to help greet people coming in through O'Hare. The plan was for folks to arrive, drop their luggage with us (to be shuttled via van directly to the hotel), and then ride the Blue Line el to the hotel. Well, this plan was disrupted by the Chicago Transit Authority's (CTA) decision to disrupt service between the Western stop and the Clark and Lake stops in order to do work that would eliminate slow zones. Ooookay. So, Chicago ADAPT coordinated with the Chicago Mayor's Office on People with Disabilities (MOPD) and the CTA to arrange for paratransit vans to pick up ADAPTers at the Western stop and shuttle them directly to the hotel.

I arrived at the Western stop at 8 am to meet up with a fellow Chicago ADAPTer, Tim Sullivan, and I couldn't believe it. FIVE paratransit vans were already lined up in the middle of the road, with a horde of CTA workers standing by. The first group would not even arrive at the Western stop till at least noon! Impressive. This was very good work because definitely, ADAPTers are a group who know how to advocate when needed, and we didn't need to tangle with the CTA right at the beginning of the week ahead.

We had a great team of Chicago ADAPTers working at all the places that people came in. At O'Hare, some things went smoothly and others were rough. We had some small groups but then we had big groups with as many as ten wheelchair users on one plane. It took more than one group TWO HOURS to de-board. It was terrific to finally greet people once they got off the plane and to send them on their way to the Windy City at last. A lot of folks had already endured a long car ride and a plane trip, then were going to ride the el and then a paratransit van. A very, very long day for many.

I rode back to the hotel with Cecil Walker's group from Kansas. The state of Kansas is home to a lot of great organizers (not just ADAPT, incidentally). The lobby was jam packed full of ADAPTers and Bob Liston (MT), Ed Hoffmans (IL), Sandi Klink (TN) and Mike Heinrich (TN) were working their butts off checking people in. I was soooo happy to see lots of people from everywhere and to know that we were gonna KICK SOME ASS! Chicago ADAPT had been looking forward to this for months and months and now finally our time has arrived.

Sunday, September 9

Sunday morning bright and early at 8:30 am I joined the color leaders meeting out in a parking lot near the hotel. For this action, I served as a color leader for the first time (and was proud to be the newest deaf color leader too, in a while). Color leaders are in charge of the color groups for National Action. Their role is similar to that of sergeants in the army, sort of. Our day leaders reviewed tasks and priorities for the color leaders to handle with the color groups. I actually mistakenly went to the new people's training (oops) but got to see that we had a LOT of new people get trained. Looked like somewhere between 60 and 80 people. Lots of people from the state of Illinois too.

After the color leader meeting, I took up my post at the registration table to check in folks from Illinois or who were affiliated with Chicago ADAPT. I was spelled by Galen Smith and Mary Delgado (thanks guys!). I helped people figure out their color groups and collect emergency forms. Meanwhile, behind me in the ballroom folks were attending the ADAPT National Housing Forum. Talking to new folks at the reg desk was fun for the most part, but there were plenty of issues to get resolved and lots of questions to answer. Many new folks were very concerned about the question of the week: to get arrested or not?

A lot of chapters, as well as outside groups like FRIDA and Not Dead Yet had set up tables in the hallway and people did the crip version of mall shopping. This action's National t-shirts were so popular they actually sold out Saturday. Latecomers were very bummed, but over the next couple of weeks you can still order the shirts from Denver ADAPT at Atlantis. You can also still buy t-shirts from Chicago ADAPT. Just bounce me an e-mail.

I didn't really get to hear much of the Housing Forum, but coverage is provided at the ADAPT Action Report, and I have provided that link farther down the page. My understanding is that while there was some great testimony, HUD failed to step up the momentum on affordable, accessible, integrated housing. Huge amounts of grassroots people power have been put into advocating on this issue with HUD and it is just ridiculous that HUD, after all of that, can't meet us halfway.

Sitting at the registration desk, it was also clear that throughout the week were going to have traffic issues within the hotel. The elevators were not very fast and pathways became quickly clogged with wheelchairs and walking people squeezing past. The ballroom accommodated our people fairly well, but the outside corridors were a bit cramped. Folks were beginning to gear up and accept this as a fact of the action and planned to be places very early accordingly. Later in the week, I was to hear Bob Liston tell the color leaders in effect, "You're organizing your people too well! Everyone is so early that people who have early meetings can't get to them on time!"

At 4 pm, the color leaders converged again to review the plans for the next day. We were to get our people lined up at 8:30 am the next morning for the first action of the week. Our assigned day leaders were Rahnee Patrick of Chicago (FRIDA Woman! smile) and Randy Alexander of Tennessee. I knew that with these experienced (and very tough) activists as the red group's day leaders, we'd see some very interesting action. My group of color leaders reviewed the list of folks assigned to our group. The red group and the black group were also the only color groups assigned interpreters, so I knew there would be other Deaf or hard of hearing folks assigned to this group and that it would be important to communicate with them. I was excited about meeting the folks in the group at the evening meeting and noticed our group included Tove-Anita and Knut Flauum from Norway, which was extremely cool. (See for their disability rights organization in Norway.) The Norwegians are interested in possibly bringing ADAPT style work to Norway.

At 7 pm, all of ADAPT gathered in the ballroom for our welcome opening meeting. Our day leaders greeted us and reviewed some housekeeping items. Karen Tamley, MOPD Commissioner, spoke with a letter from Mayor Daley greeting and welcoming ADAPT to Chicago as one of the top disability rights organizations in America. Although we do love Karen (who is an old ADAPTer), I did hear some jaded comments to the effect that Daley had sent along the letter just in case we were thinking about doing an action on him. In my opinion, while Mayor Daley has illogically unreasonable amounts of power, our fight against the institutional bias is WAY bigger than Daley himself.

There was also an issue with the National Action tshirts...they have a couple bloops on them. But as Rahnee Patrick of Chicago ADAPT pointed out, we weren't doing a National Action for some frigging tshirts. We're acting to save peoples' lives. Actions are NOT ABOUT THE T-SHIRTS. Amen. Wear your shirts with pride, folks.

We then all broke up into color groups for the first time and met our teams. Color leaders went over items the groups needed to know, especially regarding arrest. We had to figure out who in our groups was or was not willing to be arrested, and which color leaders would be willing to be arrested if needed. I felt that it was very important at this action to have Chicago people be arrested, so I knew that arrest was something I would be willing to risk. If Chicago folks were not willing to be arrested, why have this action here? So I felt it was an action I wanted to take not only because I believe that ADAPT nonviolent civil disobedience is effective, but because I felt I owed it to people who are incarcerated in nursing homes to do the most I could do.

With a group as organized as ADAPT, arrest can be pretty much a bureaucratic procedure, especially because there are so many of us. The nerve wracking part of arrest is mainly what happens before the actual arrest. Flouting social conventions by blocking garages or doors can be very unpredictable. When you are asked to escalate your presence to create more pressure on the people we are trying to reach, it can be tough to figure out how to do that in a nonviolent way. Passers by are often the ones we really have to watch out for, not the police. Because most people don't really understand why ADAPT does such hard-hitting actions, reactions are often intolerant, narrow-minded and misguided. The police at least usually follow a particular set of rules, and we know what those rules are, so we are actually able to work with them (usually).

The key thing to understand about arrest with ADAPT, the very bottom line, is this: ADAPT is not simply a bunch of protesters. ADAPT is a group of hard-working advocates who have fought for a cause every day for the last 25 years. For the last 17 of those years, that cause has been getting people out of nursing homes and institutions. Every day, people die in nursing homes or experience pain and abuse and most certainly loneliness and isolation and poverty. When ADAPT slows down a business or a building for 3 hours, that's a small price to pay to empower millions who do not have control over their own lives. If you're reading this and you're concerned about people who get "inconvenienced" by ADAPT actions, just remember this: institutionalization is a modern day form of slavery. And I'd say there's lots of folks out there who'd say ending slavery would be way more important than "inconvenience."

Monday, September 10

As many of you know, FRIDA, ADAPT and Not Dead Yet have been advocating with the American Medical Association on disability related issues since January. Today's action was to be personally significant for me given the many many hours I have put to work on this campaign.

This morning, ADAPTers lined up and down the block around the hotel at 8:30 am sharp. First point of business this morning was to sort out who was willing to be arrested so we could make sure to place them strategically. Then, color leaders went up and down the line to make sure people were accounted for and knew the rules about single file. There were a LOT of cops milling around. Chicago is one of the top cities for police surveillance in America and through the next few days we would be constantly escorted by police and their communications truck. MOPD and ADAPT had worked with the cops to prep them for this action, and so we actually always had a police escort that assisted in protecting us against traffic and preventing pedestrians from crossing our line, which stretched six city blocks.

For readers who live outside of Chicago, here's an interesting tidbit on Chicago politics: Ron Huberman, the President of the Chicago Transit Authority, used to be Daley's chief of staff. Prior to that job, he helped develop the city's blue light surveillance system. He is also on good terms with MOPD Commissioner Tamley. Small world eh?

Anyway, we finally set off! I was up by the front of the line and seized a moment in the initial march out to eat a saltine cracker...which turned out to be rancid. I'd given some to one of the interpreters with us and we looked at each other and KNEW we'd just had a bad cracker. I sprayed mine out into the street. So if you were behind me that day and it looked like I was puking, all I can say is, bad cracker, guys. Whoops. (How can saltines go bad?!?!?)

At that point I swigged down a bit of Coke and proceeded to kick some color leader ass, helping to lead chants, make sure people stayed in single file (I need a vacation from the words SINGLE FILE PLEASE), and ensure folks didn't ruin their chairs via potholes. On the whole, people did a great job. I noticed that the eyes of passers by got really big when they walked past us. I could feel a sense of nervousness in some new ADAPTers and also a sense of very reassuring calm in a lot of veterans. It was good to see people like Dale from Denver and Steve Gold helping us hold the line.

As we neared downtown, media cameras began swarming us, before the media team had even begun making calls. We had kept our destination a secret, and I had no idea what we were doing for sure, so when cameramen asked me, "Are you going to the State of Illinois building?" I had to answer that honestly I had no idea. But then we passed the State of Illinois building, and crossed the Chicago River to River North, and I KNEW we were about to go after the most well-known professional medical organization in America...the AMA.

We swarmed up State Street to the big glass lobby of the AMA, 400 strong, and immediately zoomed for the doors. The lead group headed straight to the one accessible door. The AMA were waiting for us. They had barricaded the door with orange and white construction barriers held down with sandbags. The doors were locked. ADAPTers removed the barriers and jammed the doors shut. No one could get in and the folks inside had been locked in by security. Another group of us had gone down and blocked the parking garage. The AMA was completely sealed.

Dr. Maves of the AMA refused to meet with ADAPT and instead sent down a PR rep named RJ Mills, who I had not met before in FRIDA's dealings with the AMA. ADAPT explained what they wanted (and incidentally the focus today was on community choice, and only community coice). Mills went upstairs with the demands and never came back down. My understanding is that Maves requested the police to remove our group.

During this process, those of us at the accessible door were dealing with media (hi to Chicago Public Radio!) and then the paramedic situation. Apparently a woman or two had a panic attack due to the sealing of the building. ADAPT let the paramedics go through a couple of times. Then they brought in two gurneys (for women with panic attacks?). The women then rode out on the gurneys. Then the paramedics said they had to go back in. At that point it was getting ridiculous and breaking our line, so ADAPT clamped down and refused to budge. The police then ordered us to disperse and we refused, so they began arresting us.

The cops worked from the outside in and ADAPTers began either turning off their power chairs or sitting on the sidewalk. Police had to push the power chair users. I was next to Beto Barrera of Chicago. As police began moving ADAPTers away from the doors, we and other seated ADAPTers scooted our butts to the door. However then the cops came to me and told me I would be arrested. I requested an interpreter. They did not have one on site. They had a cop who knew a little basic sign but that was it. I was told I would be arrested again, and I refuse dto move. They then grabbed my arms, pulled me forward so my legs dragged out behind me, and then picked up my legs, so I was on my belly, spreadeagled, in midair. As I went past the line a cheer went up. This happened for each of the folks who ended up getting carried to the "arrest zone" farther down the sidewalk.

The police had worked out a partnership with MOPD to deal with arresting a large number of people with disabilities. There was pretty much no way they wanted to haul our asses to 26th and California, so they basically issued arrest citations on site. That is basically an example of the power of ADAPT. There are so many of us, doing things the regular way in the bureaucracy is impossible.

My feeling about doing an action at the AMA is that the results proved that AMA central leadership staff have an extremely difficult time with direct grassroots action and turning it into a positive relationship between people with disabilities and medical professionals. There are many, many individual doctors with a positive relationship with people with disabilities, and that's great, but medical leadership should be more proactive so that we don't have to come and do direct action in the first place. The entire thing could have been avoided with proactive, final commitments.

As I chanted outside in time to "Just like a nursing home, you can't get out!" I thought about all the people who have been relegated to nursing homes and insitutions with a doctor's signature. So easy to get in and so hard to get out. So easy to take away a life, to make a person homeless.

At the color leader meeting the day before, a yellow leader sang:

My country, 'tis of thee
Sweet land of liberty
But not for me
Stuck in a nursing home
No place to call my own
But we are not alone
They'll get you too

After the arrests were processed, we handed our tickets to our legal team and made our way back to the hotel. That evening, we celebrated our success and plotted our next days' action. I think I finished meetings somewhere between 9 and 10, and then headed out in the rain to locate the fabled Taco Burrito King with a few other tired ADAPTers.

Tuesday, September 11

Today's action would prove to be highly irregular for me. I was assigned to the Chicago ADAPT special operations team. Today's action was to be centered on the State of Illinois building, where the offices of Governor Blagojevich and state legislative leaders are quartered in Chicago. The State of Illinois building is this giant UFO teal and tangerine glass thing that is like a huge mall. It was an extremely tough location because there were so many doors, but it is the heart of state activity in Chicago.

This morning, I put on non-ADAPT clothes according to the plan developed the previous night with other Chicago ADAPTers. Our strategy was to enter the building at staggered increments, make our way down to the food court, and pretend not to know each other while having a cup of coffee or chatting on the phone. Our goal was to then, at the signal, try to make our way up via elevator to the 16th floor. It was an incredibly tough plan and we kept it absolutely sealed.

I arrived at about 9:15 am and entered the building with my heart pounding a little. I could see security waling about and noticed cameras on the outside. I went down to the food court where for 45 minutes, I played on my BlackBerry and pretended to read. When I arrived, two cops were sitting having breakfast in the court. As other ADAPTers trickled in, two building security guards came down next to the elevators. By 10 am, state police troopers had also showed up. There were about 16 of us, at least 9 of whom used wheelchairs. We could see up to the main level where other incognito ADAPTers were maneuvering into place.

At about 10:30, Diane Coleman and Gail Kear went up. Monica Heffner followed, and then Rahnee Patrick. I then attempted to board an elevator with Mark Karner and Larry Biondi, but at that point the elevators went dead, because a) they realized we were going to the governor's office and b) the rest of ADAPT had hit the building and were flooding the escalators and elevator entrances. The 11 of us left on the basement level had then to block all entrances into the food court, a very scary thing with just 11 people.

Initially we blocked the two pedways from other buildings, very successfully. The police ended up simply shutting down those tunnels. We waited for about 3 or 4 hours as negotiations went on on the 16th floor and folks on the main level chanted their heads off. Negotiations broke down about 2 pm, and at that point we were all told to escalate our activities. Those on the main level blocked as many doors as possible. We underground decided to take our chances by leaving the locked pedways and mass our presence at the one remaining exit to the CTA. We all knew we would stay there for as long as we had to. There was a police line with tables blocking this one exit offf and we pulled up right next to the cops and chanted as loudly as we could and successfully prevented people from crossing our line. One man insisted he had to pee and I told him to respect our line and turn around, and surprisingly, he did. Right next to us was a glass vestibule with the escalators for people transferring el lines and so those changing trains could see us chanting right up against the police. Excellent public education going on there.

I am very proud of Chicago ADAPT for holding our lines in the basement. While it was hard work to make decisions collectively, we did do it. I am proud to be part of such a tough group of activists.

Late in the afternoon, about 4 or 5, we got word that we had won some commitments and that we were to leave our locations and meet the others upstairs. Naturally we were initially blocked from using the elevators, but that was quickly resolved, and as we walked out to join the others we got a cheer from those who know us. A sea of ADAPTers was massing around the atrium ring to hear the news of the commitments. The four who had made it up to the 16th floor brought down two representatives of the Governor's office, who committed to a meeting with ADAPT and the Governor by Oct 17, a seat for ADAPT on our MFP development committee, and final closure of Lincoln Developmental Center downstate. This was a HUGE victory for Illinois and ADAPT! The governor's representatives made their commitments right in front of what looked like six or seven news cameras (and I have got to say, the news coverage for this action was amazing...the media team pulled out all the stops of all the media available in a big city like Chicago).

After this, we went straight back to the hotel through rush hour, where, amazingly, the cops held back the tides of impatient workers so we could have safe passage. The funny thing is, while the cops were able to escort us as we marched, they were pretty much completely ineffective at stopping our actions once we arrived on site. We are however thankful for the cooperation of the police during our marches. I heard several stories of police approaching ADAPTers to let us know they supported us and what we were trying to do.

At our big meeting that evening, we celebrated our victory and I gave a short recount of Chi ADAPT's adventures underground. Afterwards, I went over to Giordano's with young ADAPTers from Texas and Minnesota for some deep dish pizza. One more day left!

Wednesday, September 12

Our final day of action arrived with the media announcing they had learned that we planned to go to HUD today. Clearly, reporters were doing a major guessing game with us, but ADAPT knows how to be unpredictable, so we were good with it.

Once again, we lined up by color and took off chanting, "Affordable, accessible, integrated housing!" We marched right up Halsted, right on Washington, and crossed the Chicago River....and then made a lightning dash on Wacker not to HUD, but to the Chicago headquarters of AFSCME. The plan was to get people up in the elevators and then pack the lobby. As a walking person, I was up front and ran to help hold the doors open as people flooded in...but then as there were obviosuly enough people holding the doors, I ran back and began pushing people to pack inside the lobby like sardines. ADAPTers came shooting down Washington's slight slope and zipped right up against the building....just when I thought we had enough people, I could see our line was still going!!! We finally all got packed in. Uh, we were not at HUD. :)

Rahnee and Randy had made it into the elevator, but the guards shut off the elevators mid-ascent, so for a little bit there was a scary "stuck in the elevators" moment. They were eventually allowed up in the 8th floor, where they proceeded to negotiate with AFSCME to get their support for community choice. However, AFSCME totally failed to deliver and negotiations broke down. Down where I was, I had been handed a patient robe by Johnny Crescendo and was holding a door and a sign that read "I need help to get dressed every day" or some such thing. I had my robe on backwards, which folks thought was a riot. Again, media descended upon the scene as we shouted "People are dying, shame on you!"

Some of our people were pulled to block a parking lot. The media team were informing me that AFSCME was telling the media that the action was in fact over, which was a lie. Friends not physically present at the action, like Laura Obara, helped call the media and get them there to stay on the story.

AFSCME totally refused to work with us and so the police decided to get us to disperse via arrest. On Monday, we had about 55 people arrested; today, over 120 people made the choice to get arrested, including Marca Bristo of Access Living and many other AL folks.

AFSCME's organization has a lot of power to control the institutional bias in America. For them, institutions are good for business. The cotton industry thought slavery was good for business too, back in the day, but we have managed to make official slavery illegal.

And one other point here is that holding people against their will in nursing homes and institutions is ILLEGAL according to the 1999 Supreme Court Olmstead decision. The people who refuse to help people have community choice are in fact violating civil rights.

The arrest procedure today was similar to Monday's. Those who were arrested were moved to another area for issuing of a arrest ticket. No fingerprinting, no checking of bags, no photos. An extremely expedited procedure compared to what we have lately experience in DC and Nashville.

After finishing arrest, we headed back to the hotel, where we enjoyed our final meeting celebration and a big dance party (which we enjoyed despite all disruptions, darnit!!!). We saw Tom Olin's photo show and said our goodbyes.


I helped work as part of a team to organize this action for many months and want to publicly thank members of Chicago ADAPT who helped organize this action. There were many, many details to be handled in coordinating an action in the third largest city in America. For three days, our work held Chicago's attention and served notice that we are one of the most effective and the most organized direct action groups in the world.

For every outright victory we won as a group, we also exposed some very deep problems in industries involved in the institutional bias. While we won closure of Lincoln, we also saw that AMA executives with financial interests in nursing homes are more than willing to have us arrested to get us out of their way. While we won commitments from the governor, we saw that the union of state, county and municipal employees will do their hardest to undermine whatever progress we might make.

I think there is something wrong with our society when we think it is okay to take people from their homes, keep them locked up without any crimes other than being disabled, and make money off of that. I think it is a crime to tell Medicaid recipients in nursing homes that they can have only $1 a day for spending money. I think it is a crime to prevent productive people who are willing to work from being all that they have the potential to be. I think it is a crime that community support workers are paid piss wages and are not respected as a profession.

I think it is a crime to actively work to take away people's lives when all they have done is be disabled.

I think it is an absolute shining testament to the strength of human beings that the poorest, most disabled, most shunned, most reviled and rejected of people can collect together by the hundreds---ventilators, shunts, wheelchairs, catheters be DAMNED---and seize power by demanding absolutely nothing less than what is due to every last person on earth.


More blogs:

Cilla at Big Noise at: (Hi Cilla!)

The Divine Ms. Jimmi at:

Lager Beer Riot at:

Not Dead Yet at:

ADAPT Action Report at:

Wednesday, September 12, 2007

ADAPT Action in Chicago

For Immediate Release: September 12, 2007

Contact: Bob Kafka (512) 431-4085 Marsha Katz (406) 544-9504 Gary Arnold (773) 425-2536

ADAPT Visits AFSCME Offices, Demands They Stop Trampling on the Rights of People with Disabilities and the Elderly

Where: 29 North Wacker Drive, Chicago IL 60606

When: Now

ADAPT has requested that the American Federation of State, County and Municipal Employees (AFSCME) endorse the Community Choice Act (formerlyknown as Micassa). Despite multiple meetings with the union's leadership, AFSCME has refused to endorse the legislation or support the rights of people with disabilities and the elderly to receive community-baseds ervices instead of being forced into a nursing home or other institution. In fact, AFSCME has undercut efforts of ADAPT and thedisability community to address the institutional bias in long term services and supports by actively advocating for increased funding for institutions. AFSCME has even lobbied that institutions like Lincoln Developmental Center be reopened even though this proposal was vigorouslyopposed by the disability community.

AFSCME has repeatedly trampled on the human and civil rights of people with disabilities and the elderly. The union has sacrificed the freedomof people with disabilities and the elderly to increase their own membership and union dues, stealing lives to line their own pockets.

This must stop. ADAPT demands AFSCME immediately endorse the Community Choice Act and work with ADAPT to develop a strategy for the union to promote workers' rights without sacrificing the rights of people with disabilities and the elderly. Right now, hundreds of disability activists have occupied the office building at 29 North Wacker Drive in Chicago. There is a negotiating team of local ADAPT activists on the 8th floor.

Monday, September 10, 2007

Frida links #4

Links to news and commentaries about feminist-disability issues for your perusal:

A link to a special issue of Wagadu: A Journal of Transnational Women's and Gender Studies, which is tiled "Intersecting Gender and Disability Perspectives in Rethinking Postcolonial Identities." Thanks to Kay Olsen at The Gimp Parade for the heads up.

In this article, inventors say that brain signals can guide your wheelchair.

Kentucky plan will allow people with disabilities to stay in their communities.

Stephen Drake at Not Dead Yet has posted a commentary about a report that has just been released about the practices of the Oregon State Board of Nursing - it alleges, amongst other things that the board "routinely hid the actions of nurses who had committed crimes from criminal justice authorities," and that it allowed nurses with drug and alcohol dependencies to continue working while they received treatment.

Via Patricia E Bauer, a story about calls for police presence after abuse allegations in Texas institutions.

The baby of a Texan woman who was left in a coma after her estranged husband attacked her earlier this year, was delivered on Thursday via Caesaen section. Read the full article here.

A link here to an article about the closure of sheltered workshops in North Carolina.

Fighting For Disability Rights In America: Win, Lose...or Die Trying - to read the full article, go here.

Go here for an article in the The Boston Globe called "Families wage fight for brain-injured," that chronicles the efforts of families to secure care for Iraq veterans who have sustained traumatic brain injury in the Iraq conflict. It has been diagnosed in nearly 3,000 veterans.

After the death of a woman with disabilities at the Brotman Medical Centers, her family look for reasons and are stunned by what they learn ... Read the full article in The Lost Angeles Times here.

Friday, September 07, 2007

CFP: Women's Worlds 2008 (Madrid, July 2008)

Mundos de Mujeres/Women's Worlds 2008

This major international event will bring together people from all over the world - researchers, specialist, activist and major international public figures to discuss the key issues that impact women. A key goal is to fight against social injustices and gender inequalities. The 2008 interdisciplinary Congress has selected three concepts: frontiers, dares and advancements to address a spectrum of themes and issues that can help us understand the world we live in.

Kindly consider submitting an abstract for the following sessions:

Session 1 - Panel Title: Citizenship, policy and inclusion for women with disabilities

Women with disabilities have, until recently, remained a silenced and virtually invisible minority group. Historically, at least in the West, such women were frequently institutionalized, medicalized, eugenicized and marginalized. During the latter half of the 20th century, however, liberal-humanist movements and medical advances led to significant changes in the lives of women with disabilities. The 'last civil rights movement' of disability rights has led in many countries to anti-discrimination and human rights legislation that specifically includes disability. This in turn has given rise to policies and programmes aimed to include people with disabilities more fully into their societies. Additionally, medical advances and paradigmatic shifts in models of disability have resulted in increasing numbers of people living longer and more fulfilled lives in their communities. For many women with disabilities, this has meant that motherhood, sexual rights, employment equity, educational opportunities, and personal autonomy are rights and expectations grounded in probability rather than fantasy. Nevertheless, women with disabilities in all countries continue to face heightened gendered challenges in many areas of their lives. Women with disabilities are more likely than other women to encounter poor access to appropriate and inclusive education, lack of employment or underemployment, poverty and inadequate housing, vulnerability to violence and abuse, limits to their sexual and reproductive freedom, and lack of social and institutional support for 'natural' gendered roles, such as being a lover, partner, careerist, mother, citizen.

This session invites papers that are focused on women with disabilities and the disjunctures between civil rights discourse/ liberal-humanist practice and women's lived realities. Papers should address the barriers, challenges and triumphs women with disabilities encounter in attaining equity. Possible issues to consider would be disabled women's challenges in obtaining recognition, support and inclusion in terms of; citizenship, mothering, sexuality, education, employment, freedom from poverty, community inclusion, and freedom from violence.

If you are interested in participating in these panels, please submit your paper abstract (approximately 200 hundred words) by email to the organizer: Dr. Claudia

The deadline for submitting your paper abstract is: September 30th 2007.


Session 2 - Panel Title: In/visible: Indivisible?Women with disabilities have, until recently, remained a silenced and virtually invisible minority group. Historically, at least in the West, such women were frequently institutionalized, medicalized, eugenicized and marginalized. During the latter half of the 20th century, however, liberal-humanist movements and medical advances led to significant changes in the lives of women with disabilities. The 'last civil rights movement' of disability rights has led to anti- discrimination and human rights legislation that specifically include disability. This in turn has given rise to policies and programmes aimed to include people with disabilities more fully into their societies. Additionally, medical advances and paradigmatic shifts in models of disability have resulted in increasing numbers of people living longer, more fulfilled lives intheir communities. For many women with disabilities, this has meant that motherhood, sexual rights, employment equity, educational opportunities, and personal autonomy are rights and expectations grounded in probability rather than fantasy. Nevertheless, women with invisible disabilities are often conceptualized as being one of the last frontiers for the disability rights movement, which privileges physical and visible disabilities. Thus, women with invisible disabilities find themselves in a borderland.

This session invites theoretical and empirical papers that address how recent attempts to traffic the concept of 'difference' across the borders of the disability rights' movement in Canada (most specifically recent attempts to reform mental health legislation) and at the recent U.N. convention on the rights of people of disabilities have met with resistance to countenancing how invisible disabilities are to be figured into rights'-based struggles.

If you are interested in participating in these panels, please submit your paper abstract (approximately 200 hundred words) by email to the organizer: Dr. Leslie Roman ( ).

The deadline for submitting your paper abstract is: September 30th 2007.

Tuesday, September 04, 2007

Protesting against pity

Over the labor day weekend, the disability community spoke out against the use of pity in the MDA Telethon. For links to posts about the telethon, click here.

Monday, September 03, 2007

Frida Weekly Feminist-Disability Links #3

a jumble of news and articles for your perusal:

The doctor and two nurses once accused of killing patients in a flooded hospital following Hurricane Katrina face no further criminal charges, authorities told a judge on Monday. Link to Examiner news article here. Commentary/response by Not Dead Yet here.

Nursing homes abuse residents with drugs.

Petitclerc wins the 1,500-metre wheelchair race.

A link to Steve Drake's post about the plan by Compassion and Choices in Washington to wage another statewide initiative to legalize assisted suicide.

Two women sue Apple for ignoring disability law.

Via Simi Linton's Disability Culture Watch:
Disabled or Nondisabled: Veterans from Iraq Challenge the Definitions

Sunday, September 02, 2007

Simone D. wins! Forced electric shock treatment ruling set aside

Via Mind Freedom comes the news that Simone D has been able to stop her forced electric shock treatment.


Simone D. is a psychiatric inmate in the Creedmoor psychiatric institution in New York State.

New York State’s Office of Mental Health (OMH) aggressively pursued obtaining a court order to give Simone D. forced electroshock over her expressed wishes.

Simone D. had clearly said electroshock caused her pain and suffering. She knew that she was talking about. Simone D. had previously had 200 electroshocks.

Making it worse, Simone D. speaks only Spanish, but for years she’s been denied counseling or even staff fluent in Spanish, except for a few week period.

Today, Simone D.’s attorneys announced that she won!

This morning a court ruled that the two-year-old order to give her forced electroshock had been set aside.

Said Kim Darrow, one of her attorneys, “I was able to get the original judge to order a hearing, on the ground that his main reason for granting the shock order — that Simone might not eat and starve — no longer applies.”

Kim explained, “The hearing was held this morning before a different judge. He ruled that Creedmoor failed to carry its burden of proof.” The judge canceled out RMH’s court order for Simone D.’s forced electroshock, that has hung over her head these past two years since 2005.

This is the second person to win a victory in one month over forced
electroshock by the New York State Office of Mental Health following a campaign of public alerts and court battles.
David Oaks, director of MindFreedom International said, “Thank you to Simone D. and her great attorneys, Dennis Feld and Kim Darrow. And thank you to the many people who spoke out against her forced electroshock. The fact that John Kelly and now Simone D. have both been able to stop their planned forced electroshock shows there is hope! Keep up the pressure. Let’s end all forced electroshock!”