Day 1, Seoul: Women with Disabilities Empathy

Bridget and I woke up around 7:30 this morning, with our bodies still a bit confused as to what time zone we were in. After showering and dressing, the first order of the day was to find breakfast---which ended up being from a convenience store down the street. No, it wasn't accessible, which reminds me, here is the front of our hotel, the Dormy in Seoul:




















The Dormy is more of a business residence hotel, so we've ended up with things like a washing machine and a kitchenette. It is in the Gangnam area of Seoul. Here is a picture of the view from one of the upper floors of the Dormy, looking down on the city below:















As you can see, the buildings are really crammed close together. Seoul is definitely a city of apartment buildings, a sign of the fact that in South Korea, there is limited space for living due to mountains and a large population for the area. You can see mountains in the far background of the picture.

As proof that I really am here, here is a photo Bridget took of me outside the hotel:




















There is a bus in the background. I was eyeballing the buses to check for lifts, but it turns out that in Seoul, a) the vast majority of buses don't have lifts, plus they don't come that often and b) the subway system is by far the preferred means of travel, and it is accessible as well---but activists had to take significant action to make that happen. Some of the activists in the US will have seen the 2002 footage of South Korean disability rights activists tying themselves to the train tracks to fight for access. Looks like that got the attention of the authorities...American readers, imagine tying yourselves to the tracks of the Chicago El or the New York subway. Gutsy move, eh?

Today's main activity was visiting Women with Disabilities Empathy, which was set up in 1998. It has five main divisions: the Human Rights Center, the Sexual Violence Center for Women with Disabilities, the Soom Independent Living Center for Women with Disabilities, the Dancing Waist Drama and Performance Group and the Dancing Bakery (which is a bakery where women with and without disabilities work to create organic products, several of which are currently stuffing my backpack).

Here is a group photo of staff and supporters at WDE, along with Bridget, Sunghee, Kyunghee and I (more about Sunghee and Kyunghee below):















At 11, Bridget and I met up with the director of WDE's Sexual Violence Center, Bogjoo Bae, along with ally and translator (and filmmaking teacher!) Sunghee Hong and Korean Sign Language/ASL interpreter Kyunghee Ko. Bogjoo and Sunghee have been responsible for coordinating my women with disabilities-related business in Seoul, for which I am very grateful. After reviewing the schedule for the next several days, we discussed some of the basics of women with disabilities activism in South Korea.

Bogjoo, who is in the white shirt and seated crosslegged on the floor in the photo above, explained that in South Korea, the current picture of women's disability rights organizations first grew out of individual activism. There are about six major women's disability rights groups. Three are Seoul-only: Women with Disabilities Empathy, Women with Disabilities Arts and Culture Network and the Disabled Women's Network. Three cover all of South Korea: Korean Deaf Women's Association, Blind Women's Association and Fabulous Women of Tomorrow.

A notable point regarding several of these organizations is that they unite with groups representing other oppressed people and fight not only for the rights of people with disabilities, but for the rights of, for example, trans people and LGBTQ people. WDE and about nine other groups work together in a coalition called Anti-Discrimination Action (Bogjoo notes that this coalition is led by younger women activists).

One of the goals of the coalition for the last 6 years has been to legislate the social discrimination of people with disabilities. The government has an agenda for social discrimination legislation, but it has not been inclusive of groups such as those with psychiatric disabilities, those who are LGBTQ and so on. The coalition finally succeeded in passing a bill to cover these points and it has been effective as of April. WDE is working on a brochure to educate the public about this new law.

I asked about whether South Korea has laws that include disability as a class protected from hate crimes. Answer-not at this time. However, it is illegal to portray people with disabilities negatively in advertising.

Incidentally, Bogjoo and at least two other people we met today are connected with the National Human Rights Commission of Korea (NHRCK). Bogjoo is an advisor to the commission.

After this conversation, we went for a very nice lunch at a Korean restaurant, and then it was off to the WDE offices. Bogjoo took us on a tour, and then staff and supporters of WDE gathered with us for a group talk to teach me about WDE and allow me to have a conversation with them. I was reminded very strongly of our Empowered Fe Fes! The staff of WDE made a very lovely "Welcome Amber" sign that you can see behind me in the group photo above. Yes, it is in Korean, but they made additions in English too. :)

First, we had a powerpoint presentation about WDE's history, since it is celebrating 10 years this year. They have a seriously cool list of activities, but here are a few that impressed me most:

---since 2001, an annual human rights camp for women with disabilities
---regular performances from the Dancing Waist
---coalition building with, for example, National Solidarity of Sexual Violence Centers and Shelters and Disability Discrimination Act Solidarity
---making of "Turtle Sisters," a documentary about women with disabilities

We then had a question and answer session covering topics such as community, vision and leadership development. Some of the women were familiar with ADAPT. It's impossible to describe every little thing that happened, but some of the points that women made that struck me most were:

---women with disabilities are in a process of freeing ourselves from pity and condescension
---WDE staff work on an equal basis with each other; no hierarchy
---having those around you cut your hair off because they assume you cannot care for yourself; having your hair chopped off is a sign of the oppression of women with disabilities
---the absolute, non-negotiable need for protest/resistance in order to free women with disabilities
---the need to bring in younger leaders and empower them to be activist (girls under twenty are usually kept at home by their parents so it is hard to do outreach with this group)
---WDE folks' awareness of themselves as diverse and accepting of one another
---awareness of lack of employment as a significant barrier to personal freedom

The discussion was much longer than this, so those are the short notes, especially since at the moment I am still suffering jet lag! After the discussion, WDE hosted a very nice dinner for the group, and Bogjoo went above and beyond by giving Bridget and I a ride back to the hotel. Here is a picture of Bridget showing me her sushi at dinner while everyone is busy eating:
















WDE also gave me a nice big stack of their publications (in Korean, mostly). Although I can't read Hangul, I can see that the pictures address independent living and sexual education, two vitally important topics for women with disabilities around the world.

There was one deaf woman at the gathering, who makes her living as a seamstress. She and I had a talk to compare experiences. I am always asked how it is that I can speak clearly but am deaf. All I can say about that is, I do wear hearing aids which help me get auditory clues, and when my hearing loss was discovered at age 3, I was already talking. And I went to mainstream schools. So my answer for talking clearly---that's pretty much it, but it is something I address over and over again with a lot of people I meet.

I was very impressed with WDE as a center with a real community building feel, as opposed to an office where people work because they are paid to. I think it was clear that individuals were recognized and that people just have a lot of fun together. Nothing builds a movement like friends! I think everyone we saw today was also very passionate and very engaged---like some of the people I know back home. ;) I think WDE deserves as much financial and organizational support as it can get, because it is trying to achieve change in a collaborative way, and as many of us know, getting along with each other can be some of the hardest work of all.

Many thanks to WDE for a wonderful visit today! I hope that all of our South Korean sisters we met today are someday able to meet the rest of their US sisters, just for the sake of sisterhood.

For more information about the development of women's disability rights in different countries, check out Laura Hershey's 2003 article here.

Made it to Seoul!

Hi folks, this post will be super quick but Bridget the ASL interpreter and I have arrived in Seoul after about 26 hours of travel! We are about to crash and go to sleep, but we did have some cool experiences...our jet ended up flying the jetstream up over the Arctic Ocean and then down through Siberia to get to Shanghai, where we changed planes for Seoul. But it took a long long long time.

Tomorrow our adventures with the disability community in Seoul begin. More to come!

Taking A Stand Against the SSI Marriage Penalty

This was yesterday, but here is a heads up about the SSI marriage penalty, which has caused untold suffering to thousands and thousands of people with disabilities.

Helena, MT--- In a packed room, with U.S. Senate Finance Committee staff linked in by phone, Montana People First members and others offered personal testimony about the pain and suffering caused by the SSI "marriage penalty." Following the testimony, they presented over 2500 petition signatures they had collected from citizens all over Montana to a local staff member of Sen. Max Baucus, who chairs the Senate Finance Committee.

In addition to the monetary penalty suffered by SSI recipients who marry, those presenting testimony cited additional penalties such as;

* Not being able to openly celebrate their love and commitment to one another in the company of friends and family
* Not being able to inherit one another's estates as a spouse
* Not being able to get information when their partner is in the hospital
* Not being able to make end of life decisions for their partner when necessary
* Not being able to make funeral arrangements for their partner
* Not being able to live openly as husband and wife

Montana People First members hope that their efforts will inspire others around the country to join them in asking their Senators and Representatives to take legal action to remove the marriage penalty from the SSI program. More information is available below in the Media Advisory issued on Thursday by Disability Rights Montana, which is supporting the Montana People First Senate in the campaign to end the SSI marriage penalty.

FOR IMMEDIATE RELEASE: September 26, 2008

Media Advisory

Contact: Raylynn Lauderdale, Disability Rights Montana, (406) 449-2344
E-mail: raylynn@disabilityrightsmt.org

Montana Couples with Disabilities Take on SSI Marriage Penalty

Who: People First of Montana

What: Present personal testimony on the SSI “Marriage Penalty,” and a petition with 2500 signatures to Montana’s Congressional delegation. The testimony and petition ask for Congress to change SSI policies that discriminate against people with disabilities who marry, and that punish them for celebrating marriage and family values.

Where: Jorgenson’s Inn & Suites, 1714 11th Ave, Helena, Montana – large downstairs meeting room

When: 3 p.m., Friday, September 26, 2008

Why: Many people with disabilities live on a $637/month federal SSI benefit, an amount that is about 75% of the poverty level. When two unmarried SSI recipients live in the same household and share expenses, each continues to receive a full $637/month SSI benefit. However, when two people with disabilities of the opposite sex marry, and one or both receive SSI, their combined benefit as a couple ($956/month) is reduced to 75% of the total of their two individual benefits($637/mo + $637/mo = $1274/month)

As a result, SSI recipients with disabilities who wish to marry like their typical peers, in accordance with social convention and/or their faith, hesitate to do so, or choose not to marry at all rather than risk the loss of precious dollars needed for basic food and shelter, as well as for disability related expenses.

Seeking to challenge this policy that treats people who share households differently based on their marital status, People First of Montana enlisted the assistance of several other groups to form a Montana Marriage Penalty Task Force. Members of the Task Force come from Disability Rights Montana, Montana People First, the Montana Advocacy Coalition, the State Independent Living Council, the disability rights organization ADAPT, the Rural Institute at the University of Montana, and the general citizenry.

Why is there a marriage penalty?

The original reduction in benefits for a married couple, or a couple deemed to be married under Social Security rules, was put into place on the premise that there are “economies of scale” when two or more people live together. This “economies of scale” premise in SSI was patterned on the “economies of scale” present in the TANF program (originally ADC/AFDC) for families. When Congress implemented this “economies of scale” concept for married SSI recipients, they did so with no consideration for the extra costs faced by people with disabilities because of their disabilities.

And since SSI monthly benefit amounts have not kept up with the steadily rising costs of food, shelter and transportation, etc., an SSI dollar buys less and less every year. “Priced Out in 2006,” a national housing study published in 2007, found that the national average rent for a studio/efficiency apartment was less than a full SSI monthly benefit.

A further complication exists for people with disabilities because the definition of "married" under the SSI program is broader than the common definition. The Social Security Administration (SSA) may deem a couple to be “married” for SSI purposes if they “hold themselves out as20husband and wife to their community,” even though they do not meet the legal definition for marriage in the state in which they live. The expanded definition of marriage applies to situations where either one or both members of a couple are receiving SSI.

Typically when applying for SSI, proof of marital status is not required if the person does not live with an unrelated person of the opposite sex, and claims not to be married. However, if a person lives with an unrelated person of the opposite sex, each must explain their relationship and answer certain questions. Some of these questions include what names the two are known by, whether they introduce themselves as “husband and wife,” what names they use on their mail, who owns or rents their home, and if there are any bills, installment contracts, tax returns or other papers that show them as husband and wife.

How people answer those questions, along with other factors, is used by SSA to determine whether two individuals have “held themselves out to the community as married." Therefore, SSA can consider a couple to be married even if the couple has never been legally married.

Too often, people with disabilities who rely on SSI choose to live secretly with a partner to maintain vital benefits at amounts that barely cover basic food and shelter costs.

The U.S. Supreme Court has found that SSA’s marriage penalty does not violate the Due Process Clause of the Fifth Amendment, which prevents the government from depriving citizens of property, without due process. Unless another avenue for legal challenge emerges, Congress is the remedy for any potential “fix” that would change SSA regulations so that each beneficiary is treated as an individual.

Disability Rights Montana is the federally mandated civil rights Protection & Advocacy System for Montana. Our mission is to protect and advocate for the human, legal and civil rights of Montanans with disabilities while advancing dignity, equality, and self-determination.

To Do or Not to Do: That is the Question

The nice thing about working at Access Living sometimes is that it's often a crossroads for a who's who of people with disabilities. Yesterday, Tammy Duckworth was taking a tour. If you're not familiar with Tammy Duckworth, she's an Iraq War vet who lost most of her legs and had her arm damaged. She also ran for Congress from Illinois in 2006. Today, she is in charge of the Illinois Veteran's Affairs Department. And, she is a woman of color. Learn more about Tammy at Wikipedia.

Today, Sarah Triano brought Rebecca Maskos by my desk. Rebecca is the subject of one of Riva Lehrer's Circle Stories paintings. Rebecca works at a two-person center in Germany and tells me the German disabled women's network is doing cool stuff these days. Rebecca, if you are reading this, I wish we had had more time to talk and I look forward to learning more about your network! And for readers, Rebecca is just another one of those women with disabilities you should know...

So the big trip starts in just two days, and that's also got me thinking about why I am doing this trip, anyway...and really it boils down to this: what do women with disabilities need to DO to make the changes we need? Thanks to ADAPT, I've ended up believing in what we call the "democracy of the doers." Meaning, those who do, get a voice in what happens. So how can we women with disabilities and Deaf women get to be the doers? I recall asking Rebecca what her network does, policy, research, programs, action....and she said policy. While we need policy positions, we also need to make those positions something the average grassroots woman can act on. Because how can real change happen if it does not come from the grassroots? How can it be what people really need if the grassroots do not weigh in? We must find all means necessary to share knowledge of our oppression so grassroots folks can take the needed steps. Hence, this trip...hopefully this blog will collect and share info some folks wouldn't have access to anyway. Take it! Use it!

I also wanted to thank my Access Living colleagues for coming to my bon voyage lunch with me. I have a lot of really great coworkers and I will miss you! Your support means a lot to me. I will also miss my AYLP youth group...it's really hard to let go, but I will be back before you know it. And I will miss Chicago ADAPTers, and FRIDA. Our work together makes change possible, and we gotta keep it up! We DO, because we have to. See you in December!

The Real Reason for Melbourne

It's just a few days now before I take off with my ASL interpreter friend for Seoul, but I wanted to update on the question of Melbourne vs. Canberra. It looked like a major pain to rearrange things to get to Canberra at this point in time, and I was pondering why I chose Melbourne in the first place. To be honest, it's an art-school choice. One of those gut decisions...

I first heard about Werribee last year on a Google alert or some such thing. A couple of years ago, a group of boys who called themselves the Teenage Kings of Werribee took it upon themselves to wreak teenage style havoc in this suburb of Melbourne. Among other things, they raped a teenage girl with a developmental disability, videotaped their crimes and sold the DVD around town. The story broke on a news show.

When the DVD was discovered, there was much discussion and outrage across Australia and the boys have since been prosecuted. It frightened me because the very thing could have happened to any of the girls with disabilities I know.

In fact, rape of women and girls with disabilities is definitely a social problem that just keeps getting worse. They could be girls in your class, in special ed, a family member, or someone stuck in a nursing home. The entire issue fills me with rage. See http://www.nursing-home-abuse-resource.com/news/il-nursing-rape.html.

As a direct action activist, my instinct is to go to where the trouble's burning, even if it's been a couple of years. I can't get this out of my mind. That's why I was very supportive of FRIDA going to Alton, Illinois this past May to memorialize Dorothy Dixon, who was tortured to death by her housemates and caregiver. Going there makes the issue more real. Going to Werribee would link Australia to the trip FRIDA made in America. Going to Werribee might help us all be less silent.

Hurricane Ike, As Seen From CROWD

On October 10, I will be visiting the Center for Research on Women with Disabilities (CROWD) in Houston, Texas. If you have never heard of CROWD, it's time to listen up as they've collected lots of research on women with disabilities. Peg Nosek is the Executive Director, and earlier this month I checked in with her regarding Houston and Hurricane Ike. What's it like riding out a hurricane with a physical disability? Peg wrote up a short piece about it, and I am reprinting it below with her kind permission.

Riding Out Ike on a Vent
by Margaret A. Nosek, Ph.D.

We rode out the storm here, completely prepared and dutifully following instructions to shelter in place. It was mighty terrifying but luckily we had no damage to the house, only lots of fallen limbs.

1. The decision about whether or not to evacuate should be made out of consideration for those people who are my life support, not just me. I was completely confident we would be all right and my house would hold up. My attendants, Perla and Amalia, however, were terrified. The wind started getting very bad at around seven o'clock in the evening and the electricity went out around 10:30. I finally went to bed at two o'clock in the morning; I was tired but not afraid. My two ladies didn't sleep the whole night; they just huddled in the next bedroom with Perla's three kids. They even came to my bedroom around four o'clock to move my bed away from the window. The wind was howling and there was a constant rumble like a freight train, with trees swirling as if they were lassos and limbs snapping all over. By the morning we all agreed -- never again!

2. Generators smell really bad! As soon as we got up, four of our neighbors came over to check on me and help set up the generator. Everything worked okay and we plugged in the refrigerator and battery chargers for my ventilator and wheelchair. It was still raining and the wind was still blowing pretty hard, making all the fumes from the generator surround the whole house. The combination of fumes, heat, and humidity really started getting to me by the afternoon and I was having a lot of trouble breathing. This was the main reason, plus other reasons listed below, that I made the quick decision that we had to leave.

3. Sprint cell phones don't work in a crisis. Apparently they don't build their towers as robust as Verizon. Thanks to Amalia's Verizon cell phone I was able to connect with Chris, my nephew in Atlanta. He searched the net and found me what was probably the last available hotel room in Austin.

4. When electricity goes out you don't just lose your lights. In my naïveté about how the world works, I never realized that without electricity gasoline pumps won't work, air pumps won't work, and water purification plants shut down. Generators only run about 10 hours before you have to put in more gas. No gasoline stations were open or functioning. The fact that our water was contaminated was the final straw, propelling us down the road to Austin. After visiting two abandoned gasoline stations we finally figured out why the air pumps weren't working so we fill up our tires using an old-fashioned hand pump I had in the garage. We finally got to the hotel in Austin by midnight. It was really eerie driving the first hour through a totally dark city. Only the car dealerships were lit up.

5. Neighbors and family really are lifelines. Once I was able to get a cell phone signal I kept in constant touch with my nephew and my neighbors. We had a sinfully wonderful time in Austin. We took in some sights and caught up with lots of old friends. I even got to teach two classes at the University of Texas, one in rehabilitation counseling and one in nursing, when some faculty friends found out I was available and not particularly busy. It was glorious fun! Man, I love that city. My neighbors called me late Wednesday evenings to say that power was back on my side of the street. Thus ended our unexpected adventure. After lunch at Threadgill's and a little more playing around, we came home Thursday evening.

6. The aftermath is so much worse for low income areas. Driving around town over the last few days has deeply saddened me, not just for all the lost trees and damaged houses or the utter devastation in Galveston and Bolívar Peninsula. It’s the disproportionate effect of the event on people who lack the resources to bounce back. FEMA, some churches, and others are helping get some folks through the crisis, but I'm really concerned about those who won't have the resources to repair or rebuild. The effect on them is so much worse than for those of us who could escape and regroup.

7. Regulations are good. Whatever happened to the rule that says utility companies have to trim trees around power lines? I think deregulated public service industries have failed us miserably. Maybe enough middle- and upper-class people have been severely inconvenienced by this event that they will vote Democrat in November and get us back to a society that protects its people.

Now that I have survived, it's time to rekindle the fire in my belly and get back to work!

Margaret A. Nosek, PhD
Executive Director
Center for Research on Women with Disabilities
Professor
Department of Physical Medicine and Rehabilitation
Baylor College of Medicine

Good News from Montana

Hi folks,

On October 14, I will be at Summit ILC in Missoula, Montana for a community discussion called Women Mobilize!. This event is for women in the area to get together and brainstorm about ways to take action on women's disability rights issues and will be from 10 am to 12 noon. The address is 700 SW Higgins, Suite 101. Just a little community discussion (which is where the good ideas start!). Many thanks to the Summit ILC staff for organizing this event! To learn more about Summit ILC, visit www.summitilc.org.

T-minus One Week!

One week from today, I will depart for Seoul, accompanied by an American Sign Language interpreter from Chicago. This trip has really been almost a year in the making and so it's bit of a shock to realize that it really, really is finally almost here.

In Seoul, I am honored to be, at the moment, planned to meet with staff at the following organizations:

Korean Women's Empathy
Differently Abled Women United
The Nodl Evening School and the Nodl Independent Living Center
Women with Disabilities Network
Women with Disabilities Arts and Culture Network
Seoul Association of the Deaf

Many thanks to Bae Bogjoo, Hong Sunghee and Kim Mijoo for their help.

The other day, my friend Howard showed me a story about blind masseurs in South Korea protesting against the government allowing sighted masseurs to practice. It seems that in South Korea, blind people have had a monopoly on massage and they are worried it will take away their livelihood since it is practically the only job available to people who are blind. So 26 blind masseurs protested by threatening to jump off a bridge and the police came and arrested them, decked out in riot gear. Read the story at http://www.youtube.com/watch?v=UZI87CC9WsE&feature=related. This is just almost totally opposite to anything we know in the US today. It used to be that Deaf people were known to gravitate to jobs in printing, but that seems to be less true today and we have greater diversity of occupations available to all.

As someone who practices nonviolent civil disobedience, I have to say the South Korean police in riot gear look a heck of a lot scarier than a lot of the cops I've dealt with. Then again, here in the US the South Korean disability rights community has a rep for more hard core resistance, using tactics such as tying themselves to train tracks to protest lack of access to transportation. Truly, that is exposing injustice in the system, but it sure does take a lot of guts. As an ADAPTer, I appalud their willingness to put their bodies on the line---and I'd like to say to those who might say that it's all not necessary---yes, it is, when you're so oppressed that nothing else will work.

So my hat is off to South Korea---much respect to its disability rights activists, both women and men. I look forward to arriving in Seoul.

A Woman You Should Know

This video is about my colleague, Rahnee Patrick. The video IS captioned and was made for when she received the Hearne Award from AAPD. Rahnee is not only a woman with a disability and a woman of color, but one of the strongest women's disability rights advocates I know. Watch this video to learn more...

A Video About ADAPT

Watch this video to learn more about ADAPT. It's captioned. Everybody Counts is a CIL in Indiana.

Housing Vouchers: A Feminist Issue?

I'm back in Chicago this weekend after spending most of the last week in Washington, DC, with ADAPT for our Fall 2008 National Action. The website for the action is www.duhcity.org and the ADAPT site is www.adapt.org. My role with the action was to coordinate different forms of media with a team of really great activists, and we got a lot done, especially in terms of getting folks outside DC to participate in the action. The focus of our action was housing for people trying to get out of nursing homes and institutions. Towards this end, we had people end up being arrested for nonviolent civil disobedience at the offices of Senators Dodd and Shelby, as well as Representative Frank. We also hit the campaign offices of John McCain in Crystal City, Virginia, where at least one of our people was forced to go to the emergency room due to injuries caused by police.

Why Dodd, Shelby, Frank and McCain? Dodd, Shelby and Frank are in position to help the disability community push for legislation that would ensure coordination of CMS and HUD services to provide subsidized housing vouchers for people with disabilities who live on Supplemental Security Income (SSI). In all housing markets, a modest one bedroom costs more than the entire monthly check of someone on SSI (usually about $640). McCain is, well, McCain. The guy owns at least seven homes and can't really be bothered to deal with housing policy for people who are essentially homeless. Notice that these four lawmakers come from both sides of the aisle. Our effort is not political in a party sense. It's more about who can get the issue solved.

Housing as an issue for women and girls with disabilities is critical. At least 75% of nursing home residents are women. In addition, if a woman with a disability needs to leave an abusive household, her choices for new housing are extremely limited. In Chicago, we have reportedly only ONE battered women's shelter that is physically accessible. Moreover, plenty of women with disabilities are also single moms and a safe, affordable place to live is of utmost priority. An affordable, accessible, INTEGRATED home keeps our women and girls safe and off the streets.

So it heartens me that somewhere around 400 activists with disabilities were able to get their act together to go to DC for this fall's action and get the word out about this horrible problem, and about the fact that we actually have a policy platform that offers solutions (see the duhcity link above). It was damn tough because the world markets have been in crisis and Hurricane Ike hit, but somehow the DC Capitol Police and the police in Crystal City weren't really able to stop the force of our actions. I was arrested with my fellow ADAPTers at Senator Dodd's office because "his" aide refused to sign a letter stating she would work with us. McCain...well...I did that last spring...see http://www.youtube.com/watch?v=rDF7zr0S1wI. John McCain, despite being disabled himself, is at fundamental odds not only with feminists but with people with disabilities.

I think it was Barney Frank who said that the direct action used to reach him was "undemocratic." In case Frank hasn't noticed, we don't really live in a democracy. If we did, women and girls with disabilities would actually be heard instead of being hidden away from the eyes of legal and social justice.

Everything That Rises Must Converge

Many know the title of this blog post as the title of a collection of short stories by Flannery O'Connor (and some know the original source as Pierre Teilhard de Chardin)---but that everything that rises must converge is truly what we've got to believe for feminist disability rights. The question that's pressing on me is, how do we rise and how do we converge?

Over the last few days especially, I've been shooting emails out my wazoo (whatever you care to belive my wazoo is) to people in all the cities on my itinerary. So far, I've gotten an amazing response from folks in different places, and I cannot wait to debrief on it all as the trip proceeds. I don't wanna holler out the plans so far in case they change, but it looks like in several cities we will have community gatherings of women to talk about our issues and how we need to do the work of advocacy. It is SO incredibly exciting.

At this point there are a lot of people I need to thank....Carolyn and Sharon and Glenn and Dougie from Australia, Hong Sunghee and Bae Bogjoo and Kim Mijoo and Mirah Kang from Seoul, and Robert Kim, and Jeewon and Gabe, and Howard, and Kerrie and Mark and Eleanor and Mia from Atlanta, and Sarah W and Bob and Stephanie from Austin, and Peg from Houston, and Marsha K and Marsha C and Jude and Mary and Rosemary and Bob from Montana, and Naomi and Lisa and Kristen, and Anne and Becca from DC, and Julie from NYC, and Robyn and Laura, and Rahnee and Sarah and Laura O-G and Susan and Ana and Jenny..... and a whole boatload of Access Living and ADAPT and FRIDA and Equip for Equality people!!!...without your networks this entire thing would not be possible at all. I think my brain is going to give out thinking of everyone's names!

But we're rising...

Who Has a Stake in the Feminist Disability Rights Movement?

As I move through this project, a particular concern of mine is fleshing out the identities of the people who have a stake in feminist disability rights. Offhand, one can always say the feminist disability rights impacts and includes everyone, but I think there are particular groups of people to whom we must pay particular attention. How can we build sisterhood without knowing who our sisters are?

Have you thought about how these folks fit in the feminist disability rights vision?
...indigenous women
...immigrant women
...women who are institutionalized in nursing homes and institutions
...women who are incarcerated in the penal system
...women of color
...women who do not speak English
...Deaf women
...trans people and people who are intersex
...moms and caregivers
...siblings
...non-disabled women
...lesbians and people who are genderqueer
...women of different economic/social classes
...single women
...women who are/were alcoholics or substance abusers
...women who are homeless
...women who have non-standard body shapes
...victims of domestic or sexual violence
...girls
...seniors

I'm sure I'm missing some groups, but the point is, whatever we do to create a true united feminist disability front, we must focus on the human and civil rights of all these groups. Truly, if one of us is not free, none of us are.

As I engage in e-mail fielding to get ready for this trip, I am trying to keep an eye towards educating myself (and the folks who read this blog! smile) about all of these stakes. Recommendations gladly taken...

Travel Updates

Hi folks,

I made some alterations and confirmations to this fall's schedule. I finalized the dates for October by buying the necessary plane tickets, and I switched Portland for Atlanta. Why the switch? Well, both cities have interesting opportunities related to women and disability, but I wanted to try to get a little more diverse regional converage and I don't have any cities lined up in the South for this fall (Texas doesn't count).

Atlanta has, for example, Project South www.projectsouth.org, the Charis Circle www.chariscircle.org and through the youth activism grapevine I'm hearing some good things about some feminist activists who happen to have a disability there. Atlanta also has, of course, Mark Johnson of the Shepherd Center, who brought the Charis Circle to my attention. Thank you Mark! If you, readers, don't know who Mark is, please check out http://www.shepherd.org/news/media/press/22.asp.

Also, Atlanta is the home of Eleanor Smith, whose cause is visitability, which means designing or modifying homes and buildings so that people with disabilities can at least visit. See http://www.visitability.org/. Ohhh, a woman with a disability, huh? Cool. ;)

And last but not least, Georgia is the state of Olmstead v. L.C.and E.W., the landmark Supreme Court case that determined it is a violationof people's civil rights to keep them in institutions when they do not want to be there. It's worth nothing that Lois Curtis and Elaine Wilson, the people named in the suit, are/were both WOMEN. Yeah! They are heroes to our movement. See http://www.atlantalegalaid.org/impact.htm to learn more about them.

My last tweak to the itinerary at this point involves possibly switching Melbourne for Canberra, Australia. I've been told Canberra is perceived as a government town full of bureaucrats etc, but those government towns are where policy gets made, so it'd be good to take a look around if possible. Will update on that down the road...

The Palin Problem for Women and Disability

Lots of folks, disabled and Deaf both, took a look at the Palin speech last night at the Republican National Convention and were very, very uncomfortable. Naturally there is the yucky thing about McCain selecting a VP who is not really his peer or political partner---a younger woman who a lot of folks doubt can do the job. That's gross. There's also the fact that she's using her status as a mom of a kid with a disability as a political tool, but as the running mate of a man who won't support the Community Choice Act because apparently he thinks that kind of thing costs a million dollars a day, or should be free. Do you see the hypocrisy here? Also, a lot of us cringe at the phrase "special needs" because it makes us seem like kids when in fact lots of us are adults, hairy, gross and generally do adult things and think adult thoughts. But a lot of parents of kids with disabilities use that phrase...fyi, real adults with disabilities don't say those words. But OH---Palin wasn't talking about adults! I guess we all just die off at say 20, 21...

The really bad thing, however, is that Palin was able to pre-empt the Obama people from talking about women and disability on a very public stage. Sorry, Obama people, but she did steal that show. I think the Obama campaign has some serious thinking to do about the voice that its decisionmakers allow for disability issues. What are we, prize goats? (Maybe!!!) And you know what Palin stole the show on? Combining a woman's issue (being a mom) and a disability issue (having a kid with Down Syndrome). The Obama campaign needs to do a LOT better on this topic than it has been doing because now some women's disability rights issues are going to get big play (unless McCain dumps Palin).

Now, about having a kid with Down Syndrome...yes, 85% of women who test positive for a DS kid want to abort, so if you keep your kid, you're definitely bucking a genocidal trend. But personally, making it a right to life issue on a national stage? I don't agree. Imagine saying, "Thank me because I decided not to kill my child!" That's not about the kid, that's about the mom. I think this is clearly a women's issue because it's women's bodies after all---but it is also disabled kids' bodies too. I err on the side of choice and advocate disability-positive knowledge about knowing how kids can live a real life with a disability---then you can make your choice.

Over Here, Over There

Why choose the cities I've chosen to visit? (And believe me, the itinerary could still change a bit!) I've noticed in my last few years of work as a youth organizer that different cities or regions in the US seem to be hot spots for small communities of radical feminists with disabilities or academics with strong interests in women's disability issues.

Take, for example, Missoula, Montana. Some people have asked me why on earth I am going to Montana. Well, Montana has news for everybody. There's a bunch of feminist disability rights activists/advocates/scholars there all clustered up at the Rural Institute and the Summit CIL. The former executive director for the Center for Research on Women with Disabilities (CROWD) is now at the Rural Institute. So how could I NOT go to Montana?? Why isn't everyone beating a path to their door?

Lots of folks also wonder why I've chosen to visit Seoul and Australia. Both countries have long standing networks of women with disabilities that have not only national impact but global impact. Australia has a sort of FRIDA sister version that's been operating since the early 90s, if not before. Seoul got their women's movement started in 1994 and now has at least six different women with disabilities organizations, and a newer Deaf women's group. So the question is, how is it the the climates in these two very different countries allowed for the growth of a women's disability rights advocacy movement, while here in the US, we have strong individuals but I at least have had to struggle to find a coherent group to take action with?

I've also noticed it seems to be darn hard to find strong, active Deaf women's groups focused on social justice---if anyone knows of any, please tell me!!! I've met some great individual Deaf women and I hear the anti-domestic violence network is strong, but there's a lot of focus on the idea that communication access is the primary barrier for Deaf and hard of hearing people, and that that issue is gender-blind. Perhaps. Are we looking at EVERYTHING in the lives of Deaf and hard of hearing people with a gender lens? How about the concept that some Deaf men are REALLY sexist, and that maybe Deaf women feel they need to have a Deaf mate because the communication is easier? What kind of situation is that? Where are the people who are teaching anti-sexism in ASL? Being nonsexist is a very difficult thing for a lot of people.

Back to the point...thus far I've been lucky in finding contacts for most of the places I will go. However, if any readers know someone in Melbourne, I have some time to burn there!

More on the cities as the traveling occurs...

Action!

Hello folks, welcome to my new blog. As mentioned in the sidebar, this blog will cover my activities related to helping to organize a US feminist disability rights movement. I am very excited to do this work and invite you to help me learn and organize for feminist disability rights! For the most part, this blog is where I will share my thoughts and progress, and so my family, friends and colleagues can keep my itinerary straight.

Why do this work? The US women's movement has an older history than the disability rights movement, but in general the women's movement has failed to include disability rights issues on agenda. Many members of women's groups do not yet fully know what inclusion can mean or how disability issues can often strengthen the power of feminist advocacy (you CAN learn!). The disability rights movement, in turn, includes many strong women leaders and committed feminists, but we do not yet have a widespread feminist disability rights agenda easily accessible to, informed by and expressed by our grassroots. The US group FRIDA, to which I belong, is in part an attempt to address the need for action by the grassroots.

Globally, some countries have had strong women with disabilities networks or organizations for many years. Some of these are dedicated to services, but there are some also dedicated to advocacy and systems change. There are international feminist advocates hard at work on ratification and enforcement of the Convention on the Rights of People with Disabilities (CRPD), and on exploring disability representation on the Committee to End Discrimination Against Women (CEDAW). However, there are an estimated 300 million women with disabilities worldwide, and not all are so lucky as to have the money to work as global advocates. Most of us can't even get a job. So what can we do to take action from our grassroots?

This project is about questions and sharing ideas. My hope is that, if more people talk about a feminist disability rights agenda, the more likely it is we will see people rise up to take action in whatever creative ways they can find. I'm also interested in seeing more about a feminist Deaf agenda as well. I don't propose to be an expert or to have all the answers, but I am excited to have a discussion in different places and see where it leads. I am also excited to try to lend my organizing/teaching experience to creating forums where we can create a vision and start taking even more action with all our fabulous women activists and the activists yet to come.