Thursday, October 30, 2008

Day One, Melbourne: Looking Around and Getting Kicked

I arrived in Melbourne on Wednesday of this week and made it (sweatily) to my host's apartment by noon. I am staying in Melbourne's Central Business District (CBD), which makes it very easy to go anywhere I'd like to go via public transit. It's spring here and so the weather was balmy compared to Chicago's fall cooling-down temps.

After a couple of hours of unpacking and settling in, I decided to go for a walk to get oriented and take a look at people in general. It turns out that the CBD is pretty walkable, and is organized into major streets and laneways. The laneways are what we Americans might term side streets or alleys, but they often have more restaurants, bars and interesting shops---you just need to know where to look, it seems. Restaurants are very diverse, which reflects Melbourne's diversity in turn. Lots of sushi joints (where the sushi is pre-made and displayed in a deli case), Italian places, Korean, Thai, sidewalk cafes, coffee shops, and some American style places---they have Burger King here, but it's called Hungry Jack's. I think they also have McDonald's...although that's what's on the sign, I think it's called Macca's by regular people. There's a lot of abbreviation in Aussie-speak, so obviously there are times when my lipreading skills go out the window! There are definitely quite a few nicer places to eat since a lot of finance and other sorts of business go on in Melbourne.

So I basically wandered around for a while, noticing that there are a lot of slopes...gentle hills. Also, architectural access tends to vary. Sidewalks do have textured stripes in different places for bling orientation, somewhat like Seoul but not as consistent. Many older buildings are really interesting to look at, lots of ornamentation and material that reminds me a bit of Gallaudet University's old buildings, but is still a bit different. I will be posting pictures soon to show this.

Not long after I got back to the apartment, my host Justin came home and we went off to the opening of a Russian film festival called Russian Resurrection, where we saw "The Vanished Empire," aka "Born in the USSR." Very, very good movie! There are also, apparently, lots of Russians in the Melbourne area as well. Afterwards there was a vodka reception in the lobby (one of the sponsors was Stolichnaya). We started mingling a bit and then we figured out that some traditional Russian folk dancing was about to happen because a man and three women came out in folk gear. The three women were holding a sort of arch together in a row.

Here's where things got funny. We waited and waited for the dancing to start, but it was delayed because a singer was supposed to sing for us. So she sang, and then I realized I needed to use the restroom, which was down the stairs beyond the performance area. I went off and then as I came back, the performance was ready to begin. I had to somehow walk around the ring of the crowd to get to my spot on the other side...and as I did so, the music started and the women began Russian-dance-kicking their way around the circle BEHIND ME, which I didn't know until just as I reached my spot, I got kicked in the side! Not very hard, but a definite bump, which of course was funnier than hell. (I did manage to get out of the way to safety after that and plan to stay a safe distance from folk dancers in the future.)

At this point the jet lag was kicking in and we were hungry, so we left, grabbed some Greek food, and headed home to bed. Feminist disability and Deaf stuff was set to start the next day...

Tuesday, October 28, 2008

Arrived in Melbourne

OK, so I've finally arrived in Melbourne after some 24 or so (more?) hours of travel. Haven't done much yet but once I finish scouring emails I'll go walk around (what does that say about my priorities??). It is a lovely day in Melbourne though, fantastic spring weather and I am right in the downtown area. In the next couple of dys I'll have more stuff to report but for now....outside!

Women with Disabilities and Partner Abuse

This was forwarded to me by my friend Marsha. This affirms what many of us know: PEOPLE ARE HURTING WOMEN WITH DISABILITIES. And---WE NEED ACCESSIBLE SHELTERS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

New study about women with disabilities and partner abuse

Mon Oct 27, 2008 2:39 pm (PDT)

Woman with disabilities at higher risk of abusive relationships
From Reuters

Oct. 27: NEW YORK -- A new study shows that women with a disability are far more likely to experience a physical assault by a spouse or other intimate partner than those without a disability.

Intimate partner violence is "an understudied issue in much need of attention," Dr. Brian Armor, who led the study, told Reuters Health. "We need to ensure that prevention initiatives designed to reduce intimate partner violence explicitly include the needs of adults with disabilities (e.g. ensuring shelters are accessible).

To estimate disability prevalence and differences in intimate partner abuse among women with and without a disability, Armor and his colleagues from the Centers for Disease Control and Prevention, Atlanta, analyzed data from the CDC's 2006 Behavioral Risk Factor Surveillance System -- a large annual telephone survey of Americans designed to monitor the prevalence of key health behaviors.

They found that women with a disability were significantly more likely than women without a disability to report experiencing some from of intimate partner violence in their lifetime (37.3 percent versus 20.6 percent).

Women with a disability were more likely to report ever being threatened with violence (28.5 percent vs 15.4 percent) and hit, slapped, pushed, kicked or physically hurt (30.6 percent vs. 15.7 percent) by an intimate partner.

Women with a disability were also much more apt to report a history of unwanted sex by an intimate partner (19.7 percent vs 8.2 percent).

"Future work is needed to get at why" this is so, said Armor, who reported the findings today at the American Public Health Association's annual meeting in San Diego.

"Perhaps, women with disabilities are vulnerable to intimate partner violence because their disability might limit mobility and prevent escape; shelters might not be available or accessible to women with disabilities; the disability might adversely affect communication and thus the ability to alert others or the perpetrator might control or restrict the victim's ability to alert others to the problem."

Fear is another possibility, Armor said. "That is, a catch-22, stemming from reliance on the perpetrator for caregiving needs that might go unmet or lead to some form of undesirable placement if they tell authorities."

He concluded, "Since intimate partner violence is a public help problem, we need to ensure that prevention strategies for people with disabilities are widely adopted."

Monday, October 27, 2008

Women with Disabilities Anti Violence Conference, Nashville

From ally Spencer Duran of Austin, Texas (via Sarah Watkins):

Free Conference Addresses Violence Against Disabled Women

Accessing Safety Initiative: Building Bridges Across Disciplines

The Accessing Safety Initiative, funded by the U.S. Office on Violence Against Women, helps organizations and communities meet the needs of women with disabilities and Deaf women who are victims or survivors of domestic violence, sexual assault, and/or stalking. The Building Bridges Across Disciplines conference is part of a federal effort to bring victim assistance agencies and disability service providers together to increase their individual and collective capacities to respond effectively to survivors of domestic and sexual violence who have disabilities or who are Deaf. Participants will have the opportunity to learn, share ideas, and network with colleagues from across the country who are interested in improving their services. This free conference will be held in Nashville, TN, on December 16-17, 2008. Visit the website listed above for conference details.


Off to Melbourne!

Today's the day to get back in the time-zone saddle. Late this afternoon I am heading, finally, to Melbourne, Australia. I am so excited (and not just to see koalas, ok?)! I do have a host I will stay with, and I will be visiting the Victorian Women with Disabilities Network (, as well as the Deaf Children Australia organization (, hopefully Werribee, and possibly a few other stops. For those not familiar with Melbourne, it is located on Port Philip Bay in the state of Victoria. It will be spring there (although Chicago is experiencing some nice fall weather).

To better understand Australian disability services, Wikipedia explains the government system and disability services fall under the purview of the Department of Families, Housing, Community Services and Indigenous Affairs. The Aussie government is working on a National Disability Strategy, about which effort I hope to learn more while I am there. And why Australia, in the first place, again? Because it is the home of Women with Disabilities Australia! Shoot, I want a Women with Disabilities America!

So, many thanks to the Melburnians who have welcomed me thus far via e-mail, and I'll be seeing you shortly! Stay tuned...

Visiting the Korea Sexual Violence Relief Center

While I was in Seoul, one of my most interesting meetings occurred with a non-disability-specific group, the Korea Sexual Violence Relief Center (KSRVC). As you may recall, my trip schedule arranger in Korea was Bogjoo from Women with Disabilities Empathy (WDE), who is WDE's director of sexual violence services for women with disabilities. Of course, this meant that Bogjoo knows the KSRVC well (not to mention that, as I have said before, everyone loves Bogjoo). So she was able to schedule a short-notice meeting for me with Lee Mi-gyeong, the director of the KSRVC, located in a former house with a walled garden, in a lane in the northwest area of Seoul.

Bogjoo picked Bridget and I up from our hotel and we then picked up Sunghee, and the four of us drove over to the KSRVC, which was surrounded by trees bearing an apple-like fruit. Ms. Lee, with a smile, was waiting for us on the steps leading down to the meeting room level. As she took us into the meeting room and we settled with tea, I had the impression that this woman, beneath her approachable exterior, was also someone who was very committed to her cause.

As it turns out, Ms. Lee is essentially the woman who started and modeled the sexual violence relief shelter center idea in South Korea. (I was very impressed and had a flashback to my mother telling me to be on my best behavior.) As Ms. Lee explained it, there was essentially no support for sexual violence victims in South Korea until the early 1990s. At that time, the issue became much more prominent among scholars and the public. Ms. Lee started the KSRVC in 1991 because she thought it was needed, and the phones began ringing off the hook with women seeking assistance.

At around the same time, major sexual violence cases were publicized in the news, which generated the public momentum to pass an anti-domestic violence law in 1997. A law against sexual violence and traficking had earlier been passed in 1994 (but with too much generalness on the sexual violence angle). In South Korea, a rapist will be punished with five years' imprisonment, but often they get just a reduced punishment. There are certain protections for victims, such as being able to bring a trusted friend with her to testify, and to only have to testify once. The victim can also testify before only a camera, with observers watching via closed circuit tv.

Legal provisions for offenders are not always followed, however, and in Korea there most certainly is, as in the US, a culture of blaming the victim for the assault. People will say the victim was wearing short skirts or drinking and therefore it was her fault. The problem is, in Korea women have a lot to lose if they talk about sexual violence. Women always have to defer to men, and a man can ruin a lot of things for a woman if she makes "trouble." Ms. Lee pointed out that according to reports, in the US 36 to 40% of sexual crimes are reported by victims, but in South Korea, only 6% are reported, and this is definitely not because there is a lesser level of violence. KSRVC's counselors report that of the women who seek assistance from the center, only about 15% will actually sue the perpetrator. In a survey conducted with about 12,000 Korean men and women, only 6 to 7% reported having experienced sexual violence in some form.

I asked about rape kit distribution and administration. In Korea, the Ministry of Gender Equality distributes rape kits to hospitals for free. This has not always been the case. At first, NGOs distributed rape kits, but in 2001, the government took over that role. Each kit costs about 3,000,000 won, which is just over $2,000 is US dollars. (I was especially thinking of the reports that Sarah Palin wanted women to pay for their own rape kits in Alaska.)

Since Bogjoo was sitting nextto me, I asked what the relationship between KSRVC and WDE was. KSRVC used to counsel women with disabilities because there was no other place for them to go, but then WDE took over the disability population. Today, there are over 200 sexual violence relief centers in Korea and they are in the process of working to coordinate together. KSRVC and WDE do things like stage Take Back the Night and larger events together. They worked together to fight for the Anti Disability Discrimination Act.

I was curious about how Ms. Lee got involved with this work, and she told me her story. She is a women's studies professor in addition to working with KSRVC. In 1990 she was teaching women's studies and many of her colleagues were talking about rape and the blame-the-victim culture. In response she decided to work to set up the center. It is as simple as that! Directorship is also limited to terms of service and she is about done with her current term of service (imagine a CIL's directorship being limited to terms of service!).

Ms. Lee also possesses a global perspective on women's rights, having traveled internationally. She has visited Australia, for example. She notes that the Koreans have been able to make change very fast for women's rights, and have learned and acted upon lessons from the US feminist movement. In addition, Ms. Lee has collaborated and learned a great deal from women activists in Southeast Asia.

I asked her for her take of the general picture of women's rights in South Korea, and she said that there are essentially many fields in the movement, may kinds of work. Scientific developments have led to more and more women's bodies being managed by the state. Feminists are resisting against this. There are no groups that focus specifically on being pro-choice, partly because the anti abortion coaltion is very strong and led by Christians. Ms. Lee stated that victims of sexual violence have a right to choose abortion. However, Christian Koreans have a great deal of power in Korean society.

At this point, Ms. Lee took us on a tour of the facility's office, where they have compiled numerous papers and studies on sexual violence to support their work. The staff are crammed into a fairly small area and were hard at work on the phones when we went through. I talked with one staffer who runs the Take Back the Night events, and who also invited me to the annual big lesbian party that is very famous in Seoul. I thought this was terrific, but would not be in town for it. This was one of the few times when I heard rumblings from the queer community in Korea, and I hope that someday the LGBTQ community in Korea can be more out in society than they currently are.

After a few pictures, we took leave of Ms. Lee and the KSRVC. This was one of those moments when I wished that I could stay for six months to learn about the women's rights movement in Korea and to bear further witness to the work they are doing. Much love and best of luck to the KSRVC and its allies!


A further note: something that several women (not only Ms. Lee) brought to my attention was that the Korean Supreme Court had declared picture taking of women's legs on public transportation illegal, which I thought was a rather satisfying strike against public harassment. In Chicago and other US cities, street harassment is a major problem affecting quality of life for millions of women. When I heard about this ban, I felt darn righteously happy for the women this would help.

Sunday, October 26, 2008

Women with Disabilities Arts and Culture Network, Seoul

Earlier this month, while I was in Seoul, I met with staff from the Women with Disabilities Arts and Culture Network (WDACN), which is directed by Mijoo Kim. Mijoo has served as an international advocate for women's disability rights for many years, including through the development of the UN Convention on the Rights of People with Disabilities. In fact, several people have told me that it was in fact South Korean women who pushed for an article to be included in the Convention that would specifically address women, and Mijoo was part of that effort. Here is what I collected in my notes...

WDACN is located in Seoul Women's Plaza, which is a government owned building dedicated to women's activities. When my interpreters and I were first headed over there, we noticed something very odd. Pregnant women kept walking past us. At first I thought, "They sure are having a lot of babies in Korea!" But then, there would be groups of three and four of them walking together....the source of all the pregnant women was the Women's Plaza, which was just ending a resource fair for pregnant women. So of course, we were surrounded by expectant moms! I think it was Sunghee or Kyunghee who mentioned that there aren't a lot of resources like that for mothers in Seoul (Kyunghee herself is expecting a baby soon).

Anyway, organizations that are three years or younger are able to rent offices in the Plaza for a very low rate, as explained by WDACN staffer Ga Eun, who is deaf. Also, there are rooms for conferences, as well as dorm rooms for conference presenters, who can stay on site for free. I think Bridget and I were the first Americans Ga Eun had ever worked with and so she was initially nervous, but eventually we did very well and I thank her for her efforts to communicate!

When we got to WDACN, we sat down and met with Mijoo and some of her staff, who explained that WDACN is an NGO that offers both cultural programs and career development assistance for young women with and without disabilities. Mijoo noted that inclusion of both disabled and nondisabled women was something that made her organization a bit different but she felt it was critical. Mijoo was also adamant that developing employment opportunities for women with disabilities, especially young women, was of utmost importance. She feels this is an issue that needs to be taken more seriously at the international level, and sees the Convention as a tool to advocate for employment development.

In addition, as I recall, Mijoo also said that women also must seek equality in the disability rights movement. At that point, she said, we can better talk about women's equality and issues involving mainstreaming.

As an international advocate, Mijoo was aware that both Canada and Australia played key roles in Convention development (she and I had met in Quebec City and she knew I was going to Australia). She has been serving as part of the planning committee for the AWID conference next month, and reported that AWID was seeing women with disabilities issues as, ultimately, issues for all women. That, in effect, is Mijoo's main message to women's organizations...that women will not be free until we have freed women with disabilities. How do we make people care at the international level? Well, if you recognize that war and malnutrition creates more people with disabilities, and that women serve as caregivers, and when caregivers become disabled, others must provide that not an issue that is global?

From November 25 to 27, moreover, South Korea will host the International Women's Human Rights Conference, and many members of the Committee to Eliminate Discrimination Against Women (CEDAW) will attend. At this conference, there will be reports accepted from different nations. She reminded me that the US has not yet ratified CEDAW...I know, I know, but our administration is TERRIBLE (and by the way I voted early two days ago...the administration I want has nothing to do with John McCain).

In WDACN's employment work, it is interesting to note the community development the staff have been undertaking, working with different firms to convince them to hire young women with disabilities. Mijoo says business consultants have improved their disability awareness thus far and that WDACN is now working with college freshmen, thinking that the earlier start will give them an edge.

We covered several other topics, including the inclusion of disability issues at the International Criminal Court, which I certainly hope will come up at the AWID conference since Brigid Inder will be there (she is with the Women's Initiatives for Gender Justice). At this point, Mijoo had to split for a meeting, and Ga Eun gave us a tour of the Women's Plaza.

Later, Mijoo, Ga Eun, Bridget and I, and later Mijoo's children, met for dinner at a Japanese restaurant located in the Lotte Department Store (accessible for Mijoo's power chair, I noticed, unlike a LOT of restaurants in Seoul). Mmm, sushi. Then, we walked through one of the city parks to the subway. It was about 9 pm at night and I kid you not when I say this park was FULL. There were people power walking, skating, jogging, stretching, doing all kinds of stuff that normally takes place in daylight. Then there was a light show in one of the ponds/lakes! Normally after dark in the US, parks are not safe places to be, but everyone in Seoul had zoomed to this park. Someone mentioned that this was because it was more comfortable to exercise at night when it is cool. I also think it's a matter of a lack of urban space. It was quite a community experience though and I really liked that since there were people of all ages out and about.

In conclusion, I think Mijoo is correct in feeling that employment is a burning issue for women with disabilities, and using an arts platform to support that work is an interesting take. I think, given that I was told that most people with severe disabilities in South Korea only have an elementary level education, that the employment dream is a difficult one. One does have to start somewhere however, and while employment may not be as hot/shocking an issue as sexual violence, it is a critical one that deserves more attention from disability rights movements and social changemakers.

Saturday, October 25, 2008

Site Stats and Progress Center

Thus far, I am happy to report that Ambertracker has had 555 unique visitors over the course of its little life. While the vast majority of visitors are English users (including visitors from the UK, Australia, Canada and New Zealand), Ambertracker has also been visited by friends who use Korean, Norwegian, Russian, German, Finnish, Japanese, Portuguese, Swedish and French. The city with the highest number of visitors is Denver, Colorado, followed by Austin, Texas and Chicago. Maybe I should move to Denver...jeez! I know that a good number of visitors are my fellow ADAPTers, so a shout out to ADAPT and its incredible network. Free Our People!

I report the statistics not only because they amaze me, but also because I hope that readers are finding the site useful in feminist disability rights work. Do feel free to contact me with questions or suggestions. I am happy to share work and find partners in this cause (it's much better that way). If you see an idea to use in your area, go for it!

Also, a shout out of thanks to Progress Center for Independent Living, which last night presented me and advocate Annie Hopkins with the annual Advocate of the Year award. Progress Center is one of those small but revolutionary CILs that really utilize grassroots power. They are very conscious of youth and Spanish-speaking community development. PCIL was run for many years by Not Dead Yet president Diane Coleman, who recently relocated to Rochester, New York and is the assistant director for advocacy at the Center for Disability Rights (leaving her with, hopefully, more time and energy for Not Dead Yet...we miss you Diane!). The current executive director is Horacio Esparza, who is a longtime PCIL employee and host of Radio Vida Independiente, a Spanish language radio show about independent living.

My award was presented by my friend and fellow ADAPTer Larry Biondi, who manages to kick prodigious amounts of ass (and poke out lots of eyes with his head tapper thing) as an advocate with PCIL. I write all this because I want to express how important I think Progress Center's staff is---when there is a hot issue, they are always there in the thick of it, but they always make you feel at home with them. They are just regular people who take important risks and really believe in empowering people to live independently. Oh, and their current Board President is my good friend Laura Obara Gramer, who is leaving soon to relocate to Seattle, Washington, so if Seattle is looking for a good deaf woman ally, find Laura!!! We in Chicago will miss Laura very much.

So to wrap up, keep visiting this site, and many thanks to PCIL folks for being such great friends and activists!

A Further Recap of New York City

Having had a few days to regroup in Chicago, I still have some reporting to do from New York City, and there's not a better time than the present (especially before trekking out again for another month). This trip reminded me a bit of going to Seoul in that I was doing work AND tourism at the same time, since I've never been to NYC before (that's right, no, I have not, and yes, I had a good time and will go back!).

Aside from chilling out with Julie, going to Bluestockings and helping with the women's community meeting, I did see and do many, many other things. I spent a lot of time riding buses and subways (although buses were better for packing in sightseeing as well).

On Monday, October 20, the big task of the day was to somehow call up my travel company to get my flights arranged to include visiting New Zealand. If you're Deaf, you will know how much of a pain in the ass this is if you're not staying with someone who has a videophone. Luckily, I knew someone who knew someone at CIDNY (Center for Independence of the Disabled, New York) who is Deaf and uses a videophone, and who happened to be out of the office for the day so I could use his vp. Don, THANK YOU for this assistance. That I had to struggle so hard to find some way to make a simple phone call via VP should say a lot about why communities need VPs everywhere there are pay phones: libraries, airports, gas stations, hospitals. Unfortunately, I didn't get to browse around CIDNY very much but it was interesting to take note of the location---right by a bus line, but up a smallish elevator. In some ways, a CIL is a CIL is a CIL. (A CIL is a Center for Independent Living).

En route to CIDNY, I did swing by the Guggenheim and the Metropolitan Museum of Art. The Met was closed because it was a Monday, and the Guggenheim is having some big art piece installed so there's construction equipment all over. I decided to visit the Met the next day. I did have fun eyeballing Central Park (I was staying on the Upper East Side close to Harlem, in my friend's 811 mind you). I have never seen so many women of color pushing white babies around (the nannies were out in force). I was wondering how much they were paid and if they were live-in and what it would be like to unionize. Also, I have never seen so many women between the ages of 40 and 60 with good clothes and makeup and the look of having worked out a lot and kind of being..PRESSED...into place. Yes, I live in Chicago and we have that sort of thing here too, but I think the Upper East Side is just a whole world of its own, as far as I can tell.

So then I got on the bus and headed down 5th Avenue to CIDNY, and got an eyeful of the clothing stores and jewelers and...the Museum of Sex? Intriguing, but I wasn't in the mood and was dying to get to CIDNY and figure out the whole New Zealand thing. Which I did, finally!, and then ate lunch at an Italian pizzeria...tried pizza with anchovies, thinking maybe the anchovy taste rep was overrated..well, in big chunks they certainly are pretty salty fishy. And then by that time I was scheduled to go visit Julie at her physical therapy place in Chelsea, the Raymond Naftali Center for Rehabilitation. Along the way I found the store for Fishs Eddy and bought this tray.

Anyway the Naftali Center's location is on the 10th floor of an art gallery/warehouse building, which is an interesting feel. I found Julie talking with Harilyn Rousso, who is one of those women with disabilities that people should know. Here is an excerpt about Harilyn (who has cerebral palsy) and her work from

"Harilyn Rousso is an educator, psychotherapist and disabled women's leader. Early in her career she decided to become a psychotherapist. Unfortunately her professors did not believe that a woman with cerebral palsy could be successful in that career and refused her training. Rousso says that was a turning point in her life. Raised in a family that supported her dreams, Rousso was determined to receive psychotherapy training in spite of the obstacles. She went to another training institute and became a licensed therapist.

"Rousso soon realized that the obstacles she faced were present in all aspects of society. She decided that it was important to prepare young disabled women with skills and resources needed for fulfilling their dreams. In the 1980's she began the Networking Project for Disabled Women and Girls and based it at the New York City YWCA (Young Women's Christian Association). Bringing this project into a mainstream organization meant that the young disabled women had access to a broad range of opportunities and also that the YWCA had access to motivated young disabled women.

"This strategy of building bridges between disabled and non-disabled people is a hallmark of Rousso's work. By the late 1980's Rousso had co-edited a collection of disabled women's experiences, "Disabled, Female, and Proud: Stories of Ten Women with Disabilities" and made a film, "Positive Images: Portraits of Women with Disabilities." Since then her work has branched in three main directions: young disabled women, psychotherapy, and artist."

Harilyn, who was very nice and welcoming, was planning to come to the community meeting, so we talked about that and about my trip thus far. Our time was a bit short however, so Julie took me over to Chelsea Piers to check out the river. Oddly enough, Chelsea Piers is one of the most accessible areas of the city...nice and flat for wheelchairs, with lots of turn space. Afterwards we found dinner at the Lyric Diner. Manhattan at least has a LOT of diners...I think heads would roll if people tried to close them down.

The next day, I hit the Met right away. I've been to an awful lot of art museums, and a lot of good ones, but I have to say that the stuff at the Met is very, very good. Their Greek and Roman collection is amazing. Amazing. And their African and Oceanic art is also AMAZING. And the interior design collection, and the Egyptian exhibit...AMAZING. It made me want to go paint. The art is just alive. I told myself that I would leave when I found the portrait of George Washington, but unfortunately I got a bit lost due to exhibit renovations, and then I realized the ol' blood sugar was getting low so I had to get the heck out.

To fix the blood sugar, I found another Italian place and ordered some pasta. I looked at my watch and figured I'd have enough time to burn off a glass of wine...well! The pasta was great, the wine was good, but the wine gave me an absolutely splitting headache. Who can say why? The good part is, I just rode the bus down to Wall Street to see the New York Stock Exchange and the World Trade Center and that gave me time to wear things off. (No, I did think it would be a bad call to name this post "Amber Gets Drunk in New York." I'm just trying to keep it real.)

My bus took me through the Bowery, past Chinatown and dropped me off in front of City Hall, from which it is a short walk to Wall Street. I didn't know that Wall Street was crooked. It is. It's not straight. I had to double check the street sign to be sure, and it was crooked. The buildings are built so that the proportions seem very large, although I don't think the actual buildings are enormous. Since 9/11, the New York Stock Exchange has been barricaded, but ADAPTers will know my feeling of "hey, they blocked the doors...again!" I could hear what I thought was a faint roar coming from the NYSE. In this time of financial uncertainty, I think Wall Street made me feel very nervous, and also angry that such a small place controls so much of the rest of the world.

The former site of the World Trade Center is just a block or two away. When 9/11 happened, I was working for the Department of Education (on what else? a disability initiative internship), which is just a couple of blocks away from the US Capitol. On the upper floors we could see the smoke rising over the Pentagon, and on TV we could see the towers falling in New York. None of the phones worked. And so it was definitely a moment in time when everything was out of balance. Today, there are construction crews all over the WTC site and there is an official visitors center, which I glanced over. The site is walled in except for some screening areas, where you can look out on the construction. I think it is accessible enough for most people but if you had a low chair or were very short, it wouldn't be so great. My personal response, I think, was to ponder how so very far the US has come from 9/11, and how much damage has occurred across our country, economic and psychological, as a result. I think we are struggling to get back into a place of real freedom, not George W. Bush freedom, and that we have to do so makes me very sad. I could not, at the site, think too deeply about the horrible way that so many died there. I think the fact that there was an official visitor center now kept me from feeling a real emotional anchorage to what happened there.

After the WTC, I had to get myself to Chelsea for the women's community meeting, and took the subway over (picturing what it would have been like to die in the subway tunnels as the towers collapsed).

The community meeting itself has already been described in a previous post, but let me add a few words. There were a few logistical issues, but I am proud of Julie for managing to get a whole bunch of people there relatively on time, and fed. She really did work her butt off, and for that I thank her. I also want to give another shout out to Nadina, who I know wanted to be there but could not. Nadina, we did miss you and I look forward to being able to work together! If you don't know who Nadina is, see Nadina has been one of Julie's mentors, so it's nice to see a web of feminist support for younger women in New York.

On Wednesday, Julie and I met up with Akemi Nishida at another diner in Chelsea. We reviewed the previous night's meeting, and had a general conversation about disability and youth and women's stuff. Akemi is a student studying filmmaking, has a disability and is originally from Japan. I feel strongly that both she and Julie have the potential to affect a lot of other young women with disabilities and so it was terrific to talk with them and see where people were headed. In particular, I know that Asian people are not very visible in the disability community for the most part other than say Yoshiko Dart (and that in many Asian cultures disability is hidden or shunned), but I think people like Akemi, and my friend Rahnee and others, will help to change that. It is very important to the progress of our movement, in my opinion.

After that, Julie took me to visit the Initiative for Women with Disabilities, which serves women with physical disabilities. They reach thousands of women a year and have about 900 active clients, according to staff at the center. They also keep a list of the sites in New York State with accessible exam tables, which I would dearly love to see here in Illinois. They offer different empowerment programs for young women, such as reaching for success and health/nutrition. In a way the center reminds me of the Women with Disabilities Center at the Rehabilitation Institute of Chicago (RIC).

At this point Julie went off to another meeting, and I hopped over to the East Village to Barrier Free Living, which is a homeless and domestic violence shelter. We really, really, really need disability inclusion and accessible shelters in every city or county across the nation. Places like Austin's SafePlace practice inclusion, but we need MORE!!!! Women with disabilities must siffer violence longer than women without simply because there is no accessible/inclusive safe place for them to go. The Barrier Free facility that I visited is in fact accessible, and I saw plenty of people with physical disabilities chilling out. The sign in the lobby says that, among other things, all residents must have an independent living plan. After giving Barrier Free a good look over (since I was just dropping in), I went back to Julie's to rest.

All in all, an interesting mix, isn't it? I think this was just a beginning visit to a very large city...but there is great potential for women's disability rights advocacy.

New National Center for Parents with Disabilities


Research and resources concerning the 9 million U.S. parents with disabilities

BERKELEY, CA -- October 21, 2008. A new National Center for Parents with Disabilities and their Families has been established in Berkeley, California under the auspices of Through the Looking Glass, a non-profit organization founded in 1982.

The Center will oversee several national research studies concerning parents with disabilities and their families, as well as provide consultations, trainings and publications to parents, family members and professionals. The research and resources of the Center will address the nearly 9 million U.S. parents with disabilities - 15% of all American families. Parents with disabilities include mothers and fathers in all disability categories - such as parents with physical disabilities, deaf parents, blind parents, parents with psychiatric or cognitive disabilities.

The Center is funded by a $500,000 per year federal grant for three years from the Washington, DC-based National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education. The new Center will focus its research and resource activities on four critical areas that impact parents with disabilities: custody, family roles and personal assistance; paratransit; and, intervention with parents with cognitive disabilities and their children.

One of the notable activities planned over the next three years is a scholarship program for high school seniors and college students whose parents have disabilities. The Center will be staffed by nationally recognized experts regarding parents with disabilities, most of whom have personal or family experience with disability or deafness. More information about the Center and Through the Looking Glass is available at the organization's website (, through two toll-free numbers, 800-644-2666 (voice), 800-804-1616 (TDD/TTY), or by email at


This new National Center will build upon Through the Looking Glass's nationally and internationally recognized expertise and leadership in working with parents with disabilities, their families, and their providers -- 26 years of groundbreaking research, services, training and resource development.

Through the Looking Glass (TLG) has trained more than 70,000 professionals regarding parents with disabilities and deaf parents, from all U.S. states and 44 countries. Since 1993 it has provided technical assistance to over 25,000 parents with disabilities, family members and professionals.

TLG's expertise has contributed to the passage of legislation in three states to decrease discrimination against parents with disabilities. TLG is one of seven disability organizations that have partnered to build the Ed Roberts Campus at the Ashby BART Station in Berkeley - a national and international model dedicated to disability rights and universal access (see for more details). Opening in 2010, the campus will house the offices of the collaborating organizations as well as Through the Looking Glass' new early child development center.

Contact: Dr. Paul Preston 510-848-1112, x104
Through the Looking Glass
2198 Sixth Street, Suite 100
Berkeley, CA 94710
(800) 644-2666 (voice)
(800) 804-1616 (TDD/TTY)
FAX: (510) 848-4445

Thursday, October 23, 2008

NYC Women's Community Meeting

Thanks to the hard work of Julie Maury, Nadina LaSpina and others, women with disabilities in New York City had a gathering to discuss women's disability rights and Deaf issues on October 21. Both veterans and newcomers kindly let me quiz them about issues in the community, while also offering LOTS of feedback.

We held the meeting in a community room at Nadina's complex (Nadina, even though you were unable to attend, we were thinking about you!). About 15 women overall attended, with several photographed below:

Women with disabilitied gather in community room in New York City

See more pictures of the New York leg of the trip at

Several of the women are active with Disabled in Action (DIA), which was one of the first direct action disability response groups anywhere, founded in 1970. Also, Jade, a Deaf filmmaker and woman of many talents, was present for part of the discussion.

So we kicked things off with the standard introductions stuff, and I explained my project and asked for the women present to provide a perspective on where they thought women's disability rights or Deaf advocacy might be. Initially, the first response was that while there wasn't any particular focus in NYC on women's disability rights, women do a lot of the advocacy here. In this group's perception in general, more women than men seem to get involved.

Women present also felt that the feminist movement did not want to be connected to disability issues. Some expressed that the feminist movement is more like "what's left of the feminist movement." They felt that even as more Baby Boomers become disabled, feminists feel disability rights activists are beating a dead horse. Really, the biggest progress for women with disabilities regarding feminism is some improved access to feminist group activities and programs, but there remains a lack of a deep understanding of disability (and Deaf) issues.

For issues: those present agreed health care is a mess. People told terrible stories of lack of access to accessible exam equipment, and problems with architectural access at hospitals. There is a huge problem regarding educating medical professionals at hospitals. Lower income women tend to get served more by interns, who tend to have the least experience dealing with people with disabilities.

There is one program in NYC that recently got a grant to improve access to mammograms for women with disabilities, and they are using a curriculum.

Others talked about employment. Some good programs to get women employed were set up in th 1970s, but were then cut because of the Reagan administration.

Younger women present brought up the issue of being concerned about teenagers with disabilities. Some veteran activists ssaid they felt that young people were not motivated enough to fight in the way that they had in the past. Someone mentioned that the issue is that younger women need more methods of empowerment.

Jade mentioned that right now, the Deaf community is much more focused on issues of technological access, not on issues of women's concern.

Folks discussed the role of transition programs and the need for better role modeling. Someone brought up the issue of SSI and the perception that SSI is a sign of dependence or laziness.

On parenting, one woman pointed out that in less developed countries, people with disabilities have more kids than in more developed countries. She felt this was because the more developed countries have a stronger bias against women with disabilities having children. This is also partly due to doctors' attitudes as well.

Lack of imagination was cited as a barrier for women getting what they need. In fact, lack of imagination, money and role models were cited as the top needs of women with disabilities, in one participant's opinion.

Finally, sexual abuse was touched upon as an issue of concern to those in the group.

At this point, I asked the group to go around and name the single most important issue they felt was important to women with disabilities/Deaf women. They said:

Health care
Economic empowerment
Not being taken seriously
Self respect and body image
Lack of opportunities (including opportunities to have a nice sexual experience!)
Issues about parents (overprotection etc)

The group also talked about political activism and having more women with disabilities run for office. In New York, there are organizations devoted to empowering women to run for office. The group thought it was especially important that women with disabilities who are veterans run for office (like Illinois' Tammy Duckworth).

At this point we ran out of time, but several of us stuck around for a while to chat, and a further issue raised was the terrible lack of housing affecting people with disabilities in the New York City area. Julie herself had to wait three years for a place to live, but the average is five. Julie collected names and numbers to have a follow up discussion hopefully soon to continue these talks and see if folks can ORGANIZE!

Home Base...Chicago. And Notes on Traveling

Because of the quirks of multi-city airline reservations, I ended up with a 6 am flight this morning out of LaGuardia back to Chicago. This meant that my poor hostess Julie and I woke up at 3:45 am to make sure I got to the airport on time. For all that, I made it back on my eleventh flight of this trip and am now happily parked in my Pilsen living room typing this post. I am taking a few days in Chicago to chill out and catch up.

What was the first thing I did after coming home? Well, I confess...I went to my local neighborhood supermercado, partly because I needed food and partly because I have a special relationship with my grocery store (you know, as the source of STUFF) and I *needed* to hear a little mariachi music piped in over the pinatas while buying some things for lunch.

I also realized, at the grocery, what a mishmash of cultural exposure I've been going through for the last month. What is today, the 23rd? I left for Seoul almost a month ago on September 27. Here is a list of random memorable moments from this past month:

...standing (appalled) before the New York Stock Exchange and Wall Street
...figuring out Korean bargain systems
...seeing the canals outside Shanghai and flying over Siberia
...the many women who came to community meetings (and thank you to EVERY ONE)
...getting bitten by mosquitos in my Seoul hotel room
...using a Japanese toilet for the first time EVER (thank goodness for camping practice!) courtesy of Narita Airport
...smelling pine trees in Montana with Sarah for Frida stuff in Austin
...passing out for a nap in Peg Nosek's living room
...learning about Choi Ok Ran
...noticing that my NYC friend Julie wore her FRIDA shirt two days in a row
...hunting down videophones in DC and NY (we need videophones EVERYWHERE.)
...comparing 811 subsidized apartments (some of my hosts live in 811s)
...visiting shelters, such as Barrier Free in New York City and the Korean Sexual Violence Relief Center (of which I will blog more about later)
...visiting Olympic Park in Seoul
...missing my friends and making a lot of new ones
...reading maps EVERY DAY. EVERY DAY. EVERY DAY.
...and of course eating, eating, eating: bulgogi with Bogjoo, Sunghee and Bridget; Red Mango with Mirah; Tex Mex with Sarah, Bob K, Stephanie and Jen; borscht and "Montana food" with Marsha and Bob L; "hippie food" with Marsha and Rosemary; tostadas with Peg and Perla; Belgian in DC with Jeewon and Hedieh; Thai in Maryland with Mariya, Scot and Sasha; New York City diner food with Julie and Akemi.

At mid-trip, I'm pretty tired and need some down time. My right eye muscles have been twitching all morning. I am still processing all that I've been shown, but I know that the weave of what I have seen is significant...and only a starting point. And it's funny but going places so quickly can show you what is constant about yourself, what is important to you and how you feel it is important to be, and that feels good.

Wednesday, October 22, 2008

Schedule Addition: New Zealand!

As some have noticed, I have a new change to my trip schedule. This past Monday, I got myself over to a videophone and called the travel company to change most of the time I originally scheduled for San Francisco to go instead to New Zealand. Believe it or not, some friends figured out a way I can visit a disability conference in Wellington. So, many thanks to Sharon Smith, Barbel Winter, Viv Maidaborn and CCS Disability Action for helping to make this happen. I am so amazed!

What's in New Zealand, one might ask? Well, did you know that the NZ government has a New Zealand Disability Strategy? Or that the current president of Rehabilitation International, Anne Hawker, is from New Zealand? CCS Disability Action itself includes an emphasis on providing bicultural services to Maori people with disabilities. Learn more about Maori culture at or at Wikipedia at

Also, CCS Disability Action, People First and Disabled People's Assembly (DPA), all of New Zealand, were awarded the Franklin Delano Roosevelt International Disability Award for $50,000 this year in recognition of and furtherance of their work on the UN Convention on the Rights of People with Disabilities. Read more at

So I am very excited to visit New Zealand and bring lessons learned to this blog!

Update on DC Women's Disability Policy Brainstorm

As mentioned previously on this blog, on October 16, a number of DC-area policy workers and I met at the Institute for Educational Leadership (IEL). This gathering was coordinated by Becca Cokley of IEL and Anne Sommers of the American Association of People with Disabilities (AAPD), and was intended as an initial starting point among mostly younger women with disabilities who work in disability policy fields in the DC area. We also did have an intern present from the National Association of the Deaf. The meeting was scheduled on something of a short notice, but we were happy to set up some kind of starting point. The main outcome of this meeting so far has been a will to do some homework and then meet again next month. The group is open to any interested women who are interested in policy work affecting women with disabilities, and to get the relevant emails, contact Becca at cokleyr (at)

Before I go into what was discussed at this meeting, I'd like to say that in my travels, I think that people in different places have a strong awareness of what is available locally, but there is often a perception that not much is being done for women with disabilities nationwide because there's sometimes a lack of or breakdown in outreach or communication at a national level. That being the case, it's been good to share resources and get people in the loop on the activities going on around the country. And there ARE some really great programs out there that people should know more about.

So here are some notes on the DC meeting, based on Becca Cokley's minutes (thank you Becca!):

In attendance: Amber Smock, Anne Sommers (AAPD), Rebecca Cokley (IEL), Deb Cotter (National Council on Independent Living), Day Al-Mohammed (American Psychological Association), Erika Hagensen (ARC/UCP Disability Policy Collaboration), Kristin Long, Christine Griffin (EEOC), Peggy Prosser (NAD).

What is needed?
...Need more information on what is out there across the country
...Resource: Center for Research on Women with Disabilities (CROWD)-Texas
...Resource: University of Buffalo has info on Deaf women’s issues
...Resource: Rural Institute on Disability in Montana (Rosemary Hughes)
...Need to get established [nondisability] women’s groups to also focus on this issue [of women with disabilities and Deaf women]
...Including domestic violence groups
...NOW is an example [some years ago, NOW partnered with disability advocates for a conference on women with disabilities....outcomes?]
...Need more research on deaf women’s needs
...Doctors need better info on treating women with disabilities
...Need companies to look at disability when looking at their diversity initiatives
...Need to get more women with disabilities leading national disability groups [there are several Deaf women leaders with the National Association of the Deaf]
...Need a National Women with Disabilities Law Center

...How to weave a disability & Deaf agenda into generic women’s organizations? (NARAL, NOW, Planned Parenthood)
...How to weave a focus on women with disabilities policy issues into our own organizations? (NCIL, disability-specific organizations, etc)
...How to integrate women with disabilities/Deaf women's policy issues into medical schools and schools that train health care professionals?
...Finding the intersection in agendas [as in an action agenda or policy agenda]

What would it take to make an agenda?
...Informal network
...Workshops at national conferences
...Need representation of disability groups, awareness also of including LGBT groups
...An examination into what others are currently doing
...NCIL Women’s Caucus (set one up!)
...Connecting with medical schools
...Value proposition for organizations
...Work with disabled medical student groups
...Have activist women with disabilities join different groups
...Survey of women with disabilities

Important Issues
...Accessible exam tables/medical interfaces
...Employment for Deaf people and people with disabilities
...Access to statistics---get a break down by gender, break down by disability, partner with disability rights monitoring groups
...Women (teenage and younger) needing mentors (youth development and leadership)
...Rape and abuse
...HIV/AIDS prevention/protection
...Crime Victims with Disabilities Act needs women’s focus
...Support and parenting
...Discrimination at fertility clinics, adoption process, child custody
...SSI Marriage Penalty
...Group Homes

We then brainstormed a few women we know doing international work, especially in regards to the UN Convention on the Rights of People with Disabilities and also the Committee to Eliminate Discrimination Against Women (CEDAW). In addition, we also thought of some organizations doing good work that we would like to know more about, such as Communities Against Rape and Abuse (CARA) in Seattle, which has a Disability Pride Project.

The group gave themselves a bit of homework...who doesn't love homework? For example, finding what the value added is for our organizations to dig into these issues, doing some asset mapping for the next meeting, thinking about what we want for women in the DC/MD/VA area, setting up a listserv, having more focused conversations.

I believe the group has already been exchanging a few emails, so we look forward to what's next blasting out of our nation's capital! Again, the group is looking to create a stronger network on these issues, so if you are interested, again please contact Becca.

Sunday, October 19, 2008

Why I'm Happily Pissed Off in New York

I confess that I was awfully excited to land in New York today, with an intensity that I didn't really expect until I was...well, landing. It was like being six and figuring out you're about to hit Disneyland. I'll tell you, way better than writing up grant reports! I had a similar reaction the first time I saw San Francisco and Chicago. LA, not so much (because LA is about CARS).

Anyway, I got my butt over to my friend Julie's house and we headed downtown for the afternoon to visit the radical activist bookstore Bluestockings. Riding on the bus is a fabulous, non-tunneled way to see a city, but it's also where I had my first piss off moment. Look at the sign on the bus says "Won't you please give this seat to the elderly or disabled," with a little heart for the O in "you":

OK, well, I heart New York too for all the nine hours I've been here, and there are lots of seniors and quite a few crips, but this is just cloying and sort of beggarly. I guess my preference would be a graphic with a wheelchair access sign and someone using a cane. Then, I figured out that New York puts its garbage out on the streets. Here is a pic of Julie next to a nice fresh pile of garbage:

Hmmm. After checking out the bookstore, where we did find some good reading, I found out about the cellar issue. That is, lots of places have these metal flaps on the sidewalk that open up so food or whatever can be delivered via ladder to the basement below, as in this picture:

Here is the same cellar door, shown from farther away. In the picture, only a orange cone denotes that the darn thing is open. If you were blind or visually impaired, or your wheelchair went out of control, it is not impossible that you could fall in:

Generally, when the doors are shut they are closed with a padlock, as in the photo below:

Julie says several of her chair user friends are afraid to roll over these doors in case they fall through. Very interesting. Where there are issues with access and attitudes---it really does make one mad, but my view is hey, here's a fight...let's go!

In the name of which, it's fun to poke things. So I pretended to pick the nose of this whiskey ad mural of a man dressed in a 19th century woman's dress:

The joys of nose picking?

Anyway, in a more serious light, New York is great so far and I am looking forward to talking with folks in particular about advocacy and disability community development. More of that will come Tuesday and Wednesday. Monday will be more of a fun day (but I manage somehow to end up with a disability angle on even fun---well, disability lite). So, more to come soon!

Friday, October 17, 2008

How to Be a Crip Tourist in Austin, Texas

There will be posts on this trip that I have gotten behind on and so there will be "catchup" (ketchup?) posts occasionally. I left Austin, ohhhh jeez...five or six days ago? but wanted to post this.

Last Saturday, my friend Sarah Watkins and I hung around Austin to see the sights. As it turns out, we saw an awful lot of crip sights, in addition to Austin sights, because a lot of crip sights are right on the bus lines. But let's start with Sarah's house. Here she is in her housing complex. Because Sarah is a state-certified crip deluxe, she managed to get 811 housing through United Cerebral Palsy (where she also works on housing programs):

Sarah at her housing complex

Sarah's place is a made-over hotel, and for 811 housing I have to say it's pretty darn nice. Roll in shower, wide doors and most of what Sarah needs for full access as a power chair user.

So, onwards to the bus tour. I was pretty shocked at how much crip stuff we passed on the bus. Austin has a nicely accessible bus system, as shown below by Sarah using the bus ramp in her chair:

Sarah exiting bus in her power chair

Anyway, so I managed to get a few shots of crip sites. For example, the state school/rehab place for the blind is right on the number 5 bus line, as are the state vocational rehabilitation offices. here is a picture of the Austin State Hospital through the bus window---for people with primary diagnosis of psychiatric disabilities (State Schools are what they call the institutions for people with disabilities of all ages---they're more hidden if you've been wondering where are the people with super serious disabilities have gone):

The State School at Austin

Check out the fencing and the spiked barbed wire on top of the wall. You tell me: is this a jail or some place where innocent people are sent to live against their will or without their understanding?

Anyway not far off the number 5, just a bus change away is the Texas School for the Deaf. In major contrast to the State School, this place has a pretty campus. Part of this has to do with strong support for the school from the community, and the fact that Deaf people want to be visible, as opposed to folks wanting to shut away ("protect") those with severe physical or cognitive disabilities. Here is the sign for the Deaf school:

Texas School for the Deaf sign

Also on the number 5 is the infamous Texas State Capitol building. Jeez, you could just load up all the crips over at the State School on the number 5 and head on over to occupy the state capitol, no problem. I mean, the legislators are only there four months every two years anyway:

Texas State Capitol at midday

OK, so for some actual fun, we went shopping. Here is Sarah with a Frida Kahlo coaster (we recommend the shop Tesoros as accessible for wheelchairs, wide aisles):

Sarah holding a coaster painted with a picture of Frida Kahlo

And here I am with a painting of Frida:

Amber with a painting of Frida Kahlo outside on the street

And of course when you are in border country you have to try on luchador masks, Mexican wrestling masks. Here is Sarah as a luchadora:

Sarah grinning in her luchadora mask

And here I am as a luchadora as well (this was the deal, if Sarah did it I had to do it too):

Amber as a luchadora

After shopping and ice cream at Amy's, which I recommend as seriously good, we went over and watched the bat swarm at the Congress Bridge. This is an Austin thing...they have the largest urban bat colony in the world under this bridge and at duusk they all come blasting out. Here is the bridge underside with signs warning against handling fallen bats and getting shit on by bats:

The Bat Bridge! view of underside, by the water

Unfortunately, the bats are damn hard to photograph cuz they swarm out at high speed and are really hard to see (with my camera anyway). Trust me, it was cool. Lots of people congregate on the bridge every evening to check these bats out. You can learn more at

Anyway it was a fabulous day and we had lots of crippy fun. :) I very much missed Austin when I left!

The DC Merry Go Round

As of right now I'm blogging from a Kinko's in Washington, DC, where I am staying with friends from Chicago who live up in Forest Glen. Yesterday was my first full day in DC...

So yesterday morning I headed up to the Institute for Educational Leadership, where Becca Cokley from IEL and Anne Sommers of AAPD had helped gather a crew of younger women disability and Deaf advocates together to discuss the picture of women's issues in the disability movement and the Deaf community. Many thanks to the women who came from organizations as varied as the EEOC and United Cerebral Palsy and the National Association of the Deaf! When I get the full write up of notes from the meeting, I will post them online. Of interest to readers may be exactly HOW women can get things done in DC.

Let's look at it this way. DC is like a giant multi-spider spiderweb. Folks work at different spider centers...the thing to do is to empower their centers to understand how to include women's issues in their work. Once DC organizations understand how those issues fit in with the overall goals, then they will have ownership of their piece of the movement and can ally on specific women's issues. At least, that is what we hope.

In addition, DC is also a great place to have women network to create policy papers, and also secure funds to hold a cross-disability women's conference. These were some of the ideas generated at the meeting. What I also found interesting was the possibility of these projects creating roles for younger women to advance their skills and knowledge. Disability movement leadership posts are pretty much locked in by veteran leaders---so to create opportunities for the younger women coming out of leadership programs, these ideas seem to have a lot of potential. Hmmmm...!

After the meeting was over, I ate lunch with Peggy Prosser, a Deaf student at Gallaudet and an intern at the National Association of the Deaf. Peggy just spent 20 years living in Asia, so we had a very interesting chat about cultural and women's issues. Thank you to Peggy for hanging with me for lunch!

At 2, I found myself over at Gallaudet meeting with Dr. Donna Ryan, who directs the Women's Studies minor at Gallaudet University. We discussed Deaf women's issues and community dynamics, and also some of the community issues that have impacted funding and support for the Women's Studies program. Dr. Ryan has been at the university for 25 years (and fyi for readers not in the know, Gallaudet University is the first and most famous college run by and for the Deaf in teh US---there are however other Deaf programs in the US). The program is relatively small, but Dr. Ryan hopes to see it continue to grow. One thing to note is that while there is a lot of leadership by Deaf women in the community, there tends to be an advocacy focus on communication for all, due to the vast communications oppression of those who are Deaf or hard of hearing. Sometimes, the wmoen's issues agenda is not as visible in the face of this larger agenda. And, Dr. Ryan pointed out that movements have a time and in my estimation, right now the disability community is more ready for a women's movement than the Deaf community at this time, maybe.

After meeting with Dr. Ryan, I spent time running errands and a little down time. I came home to find that my hosts has ordered Chicago-style pizza for dinner!

Today, I met with Shannon Lynberg of the Young Women's Task Force,, whose fiscal sponsor is the National Council of Women's Organizations, Shannon and I hashed out some of the dynamics within and around YWTF, which does happen to have a chapter in Chicago. There are some tangents with disability work, but not much, but we hope to develop stronger bonds in the future. A very nice first meeting. By the way, both the NCWO and YWTF policy agendas include little in the way of disability issues, though they certainly cover feminist issues. Hopefully we can all partner to change that!

Afterwards, I stopped over at AAPD to say hi to Anne and drop some stuff off, and then went over to the GWU area to meet up with Carrie Ann Lucas, who is a lawyer and a disabled mom of three disabled girls. Carrie is the director of the Center for Rights of Parents with Disabilities, part of the Colorado Cross-Disability Coalition, Carrie and I chatted about the scene for parents with disabilities and just disability women's stuff in general. If you are a parent with a disability, I strongly urge you to contact her so she can continue building her network of parents with disabilities. Carrie is energetic and pretty fabulous, so get to getting.

Tomorrow, I am just hanging out, so a slow day, and then I will fly to New York City on Sunday to stay with the very lovely Julie Maury, an emerging leader in ADAPT. More to come soon!

Thursday, October 16, 2008

Gathering Updates

Next week on Tuesday the 21st, I will be in New York City for a women with disabilities/Deaf women action gathering at from 5:30 to 8:30 pm (actual discussion time is 6 to 8 pm) at Penn South, Community Room 7A, 328 W. 24th St, New York City. Enter the path to building 7 and go past it, then right into the community room. Call Nadina 212 727 0789 or Julie 646 290 8895 for more info and to RSVP (thanks Julie and Nadina!).

I will also be at Charis Circle on November 18 at 7 pm. Charis is a feminist bookstore in Atlanta, Georgia, located at 1189 Euclid Avenue. See

These events are free and open to interested women who want to take action for our rights!

Signed Into Law:The Prenatally and Postnatally Diagnosed Conditions Awareness Act

This was passed last week. Here is the text of an info sheet from Generations Ahead, the World Institute on Disability, the National Women's Health Network, DREDF and the Reproductive Health Technologies Project.

The Prenatally and Postnatally Diagnosed Conditions Awareness Act

The Prenatally and Postnatally Diagnosed Conditions Awareness Act (S. 1810) is a positive step toward providing better information and support to pregnant women and new mothers whose fetus or newborn is diagnosed with a disability. This information sheet highlights the Act’s benefits and identifies some of the issues to monitor in its implementation.

With Democratic Senator Edward Kennedy as an original co-sponsor, the Act does not include anti-choice language nor restrict the ability to obtain an abortion, even though it was authored by Kansas Republican Senator Brownback, a staunch opponent of abortion. Both the Senate and House of Representatives passed S. 1810 and the President signed the bill into law on October 8, 2008.

What the Act Will Do

The Act will provide more comprehensive information and support to pregnant women and new mothers whose fetus or newborn is diagnosed with Down syndrome or another condition. The Secretary of the Department of Health and Human Services is now authorized to:

· Collect and disseminate evidence-based information on Down syndrome and other conditions diagnosed either through prenatal genetic testing or screening or in the 12-month period beginning at birth.

· Establish a resource telephone hotline for new or expectant parents.

· Expand and further develop local and national networks for peer-support, outreach and information to parents.

· Establish awareness and education programs for health care providers who talk to parents about prenatal genetic testing.

· Set up a national registry or network of local registries of families interested in adopting newborns with Down syndrome and other conditions.

Preserving Reproductive Autonomy and Addressing Disability Community Concerns

Disability advocacy groups and reproductive rights and justice organizations share an interest in pregnant women receiving unbiased, nondirective information about prenatal genetic conditions. The disability community has been concerned that pregnant women receive negatively biased information about what it means to have a child with a disability, shaped by negative societal attitudes toward disability. A lack of balanced information may contribute to the high rate of abortion upon a prenatal diagnosis of Down syndrome.

By providing more comprehensive information and resources, the Prenatally and Postnatally Diagnosed Conditions Awareness Act may effectively expand women’s reproductive options. The information and support provided will allow a pregnant woman and her family to determine an outcome that fits within their personal, cultural, religious, and social context. Specifically, more comprehensive material about disability and an opportunity to speak to more people than one physician or genetic counselor will better prepare women and their families to make an independent decision that is right for them.

Implications for People with Disabilities and Society

The disability community and society at large may benefit from the Act in several ways. Providing accurate, balanced information about both the positive and negative aspects of disability may expand people’s views of disability and of the potential for people with disabilities to participate in and contribute to society. The Act may help parents and the public shift from viewing disability as simply a medical diagnosis and tragedy to a more enlarged view that encompasses the full potential of children with disabilities and the experience of parenting a child with a disability.

Implementation of the Act

Disability rights organizations and reproductive rights and justice organizations can be instrumental in ensuring that the Act is implemented in a way that benefits all women. Some of the issues that must be considered are:

· Adequate funding must be allocated to properly implement the Act.

· As stipulated in the Act, disability advocacy groups should be actively involved in developing the supportive services in the Act. Information should include a broad disability perspective, covering many different disabilities and including the voices of adults with disabilities and parents of children with disabilities.

· Information and resources should take into account the broad range of reproductive options available to pregnant women and should not steer women to any particular decision.

· Resources and services must be available in a variety of formats to all women, including those from diverse cultural and linguistic backgrounds, those who do not have telephone or computer access, those who have disabilities, and those who cannot read written materials. Affected communities should be involved in preparing and distributing information and setting up networks.

· Information and support should be equally available to women who learn of a disability diagnosis at birth or through prenatal genetic testing, recognizing that not all women have access to prenatal testing, based on issues such as income, geography and language.

· Genetic counselors should be included in awareness and education programs for health care providers, even in states that do not require genetic counselors be licensed.

· Information and resources will need to be updated over time, and measures should be put in place to ensure continuing development and research.
With these issues considered, and with organizations from disability rights as well as reproductive rights and justice at the table, the Prenatally and Postnatally Diagnosed Awareness Act has the potential to benefit all of our communities.

This information sheet is authored by Disability Rights Education and Defense Fund, Generations Ahead, National Women’s Health Network, Reproductive Health Technologies Project, and World Institute on Disability.

For more information, please contact Generations Ahead at (510) 832-0852 x308 or x306.

That YouTube Video

Today, I found out that footage and photos of my arrest at John McCain's office, posted on the web and on YouTube, have made their way into a short film about why McCain and Palin suck for disability rights and community choice. The video is below:

Yes, that is me being arrested on the floor while script rolls says "this is what happened to disabled people when they visited McCain's office." Well, it's true. It did happen. And it happened again last month when ADAPTers stormed McCain's headquarters in Virginia and were arrested (and in some cases, hurt by) the police. ADAPT is the only group with the guts to do this kind of thing, and we are doing it for all our people, ESPECIALLY THE MANY WOMEN TRAPPED IN NURSING HOMES AND INSTITUTIONS. So, many thanks to the person who made this video. A clip of Stephanie Thomas leading ADAPT in a rally is also included---keep an eye out for her too.

Montana Women with Disabilities Rock (Mountainously)

Thank goodness for airport computer charging terminals and a couple of hours of layover! It has been a struggle sometimes to find the time and space to write for his blog given that most days I am either flying or meeting people. At night, I am pooped. At the time I write this, I am at Denver International Airport having just landed from Missoula, Montana.

Frankly, I really liked Missoula a lot and I was very impressed by the people who hosted me from the Summit Independent Living Center and the Rural Institute on Disability. I was very much struck by their “let’s get it done” attitude. Several women here have been actively working or researching issues affecting women with disabilities for quite a long time. I was happy to observe their grasp of different issues and to learn about a few things nobody else had discussed before (around me, at least).

So on Tuesday October 14, Summit convened a gathering of maybe 15 women from the community. Many thanks to Jude, Mary and all the staff at Summit for their hard work to get people there! Also of course many thanks to Marsha for putting out initial feelers and for her many ways of supporting this work!

After introductions and my usual blathering about my work, we uncovered the following issues:

Mothers with disabilities are more closely watched by the state. The government tends to interfere more in your life. I asked the women in the room how many were mothers and at least three quarters raised their hands.

There was a concern about women with disabilities who did not qualify for SSI, and who were living at shelters. For these women, their medical needs are not met and there is no way to get help. Many of these women are past having kids and are not yet of retirement age.

Many women with disabilities want to work, but transitioning from Medicaid to private insurance is very difficult and a disincentive. This is precisely the kind of disincentive that was being discussed at CROWD back in Houston.

Some of the women present had were traumatic brain injury survivors. One emphasized the need to educate people about women with invisible disabilities. However there is no money for this kind of effort.

When older women with and without disabilities become widows, they often neglect their health care needs in favor of keeping the homes they live in. Also, they may not be used to speaking up for the things that they need, given the (worldwide) tendency of women to put the needs of families and others before themselves. The women at the meeting said that basically a lot of women need to have improved communication skills, as well as improved access to affordable, accessible healthcare.

In small towns and rural areas, having someone go into a nursing home or institution carries very negative stereotypes. Families prefer to be able to take care of their own. Because of a deep pioneer culture of hard work, independence and pride, having a family member go into a nursing home can imply that the family has failed. Also, a nursing home means that outsiders, especially government workers, have the power to come in and control the family. The pioneer spirit can also mean that it is incredibly difficult for people to ask for help. People will not approach service providers, so service providers have to find creative ways to let people know where they can get assistance to empower themselves. Also, because in small towns and rural areas everyone knows everyone else, people are often afraid to ask for help because of what people will say. Also, in these areas, if a person is in an abusive situation, it is much more difficult to escape and get distance between the victim and the abuser.

Further exploring gender issues in Montana, depending on the region there can also be a deep bias against men as caregivers because men are supposed to handle outdoors type stuff. Women are supposed to handle all the other stuff. Both men and women however, especially in rural areas, work very hard, handling two and three jobs to support themselves and their families. (Obviously, if you are a woman with a disability who cannot do what is considered “work” very much, there will be self-esteem problems.)

The women at the meeting furthermore agreed that Western “moachoness” is hurting men because they cannot get help for things when they need it. Someone mentioned that Montana has the second highest highway death rate in the US. This reminds me that Marsha had mentioned the day before, at MIC, that Montana has the highest rate of traumatic brain injuries in the country.

Anyway, given all of this independence, people really want to be able to show they can do things themselves.

In terms of marriage, it was mentioned that for many divorce is something people really want to avoid and it is viewed very negatively.

A woman with a visual impairment noted that she cannot drive herself places, which led me to ponder how the hell people who can’t drive get around this very large state with very few people---676,000 or so. One of the mindbending things about this trip is definitely demographics. Seoul had 10.3 million residents. Texas is our largest state. Montana is large but has relatively few people. As a certain friend of mine would say, oy. Anyway, transit wise, Montana is not very crip friendly.

Back to families: families often do not want to apply for government benefits because it means the government is in their business. As you might imagine, Montana has a lot of conservatives, but also just independent people.

Regarding women on reservations...they are often geographically far from services and in remote areas. Families may also be against daughters having a certain amount of mobility freedom because it means being too far outside the family circle. Someone recounted the story of a Native American family in a remote location who had a daughter with cerebral palsy. The family would not jump the hoops necessary to secure a power chair for this daughter because they were worried she would go too far from home.

Many women with disabilities in Montana struggle with not wanting to be a burden.

It can also be difficult to find doctors who are willing to care for people with epilepsy. One woman with epilepsy recounted how no doctors would care for her when she was pregnant because they thought she would have seizures when she gave birth and would end up suing them for malpractice. The doctor who was willing to help her told her she had to have a C-section or else he would not help. And, they told her they were afraid she would pass her epilepsy on to the child, even though she had acuired epilepsy in a car accident. She is, however, currently a proud parent.

Someone mentioned that while there are problems in Montana, there are also many cultural strengths. The pioneer spirit certainly does lend itself well to community and survival in the face of the odds.

As mentioned previously on this blog last month, People First Montana also led a rally against the SSI marriage penalty. That work is still ongoing and they have presented the issue to Montana Senator Max Baucus, and they are awaiting word on whether he can help. In my opinion, the SSI marriage penalty is a massive issue for thousands of people with disabilities across the country who are denied formal legal partnership with the one they love, simply because if you are on SSI and get married, the government will significantly reduce your Medicaid benefits, which are a lifeline for so many. The day the SSI marriage penalty is killed will be a day of liberation for people with disabilities across the US.

We did discuss the issue of having a women with disabilities movement versus having a pro-choice feminist disability rights movement. I think we had people on different sides of the fence in the room, and so the issue was raised for the record but not discussed in depth (however I feel we are doing the groundwork now that will lead us to a serious community consideration of that issue).

Someone also raised the fact that girls with disabilities face many similar but some different issues than women with disabilities and we must work to empower girls more. There was some excitement from Summit staff about this.

On shelters and “homes” for teen moms: there is a shelter for teen moms that is accessible but only because there is a lift, and most of the rooms are in the basement. Folks were wondering what the percentage of young women with disabilities was.

Someone raised the issue of women with disabilities who work at home, and whether it is possible to apply ADA or Fair Housing laws to home workplaces.

Childcare workers are not trained to support mothers with disabilities, at all.

The issue of visitability was raised as something very important for women with disabilities (and this was mentioned in Texas as well). Having places that are visitable will contribute to a woman’s empowerment and self esteem.

We then moved on to talk about taking action. Folks considered different groups to organize, such as youth, seniors, Native Americans, rural people. Some populations are very, very difficult such as a polygamist community in Montana. The women really wanted to work to combat negative feelings surrounding different issues and dicussed ways to do outreach, such as through community events, food banks, cafes, gas stations, and other places where people come in to get things they need and talk.

Also, and very importantly, the idea of a national listserv for women with disabilities organizing women with disabilities was bounced about. We will need a little further discussion on this but look for news to come on this blog.

We wrapped up with definitely a sense of empowerment, and then I went off to lunch with Marsha and Rosemary (Don’t Call Me Dr. Hughes) Hughes of the Rural Institute. It was a pleasure to sit and talk with Marsha and Rosemary because between the two of them, they really have an astounding wealth of knowledge about disability and especially women with disabilities. Or, let me put it this way. Ever sat at a table with a bunch of really smart women (Bob Liston, does this sound familiar?)? Well, there’s this kind of tidal wave of intellect and network energy that comes through.

Rosemary and her crew at the Rural Institute were in the midst of prepping for a “train the trainers” conference on abuse prevention (FOR WOMEN WITH DISABILITIES!) next week. So I really appreciate their time because they were super busy!

Among the many things Rosemary and Marsha and I discussed, possibly one of the most important, for me, concerned learning about Western (as in, the Wild West) gender stereotypes, the “pioneer spirit,” and rural/small town culture. I am very glad to have visited Montana if only to begin seriously pondering this important aspect of life for many in the United States.

For example, if you DON’T live in a small town or very rural area, have you ever considered what it would be like to live where EVERYONE around might know your business? Seriously. Where could you get help? Would you be hesitant to ask?

Marsha mentioned that as someone who works on SSI issues (she is one the board of the Social Security Administration---did you know they have a BOARD?!), in Montana people are VERY reluctant to apply for SSI, as opposed to, say, Chicago. That’s because people will know....and they don’t want the government in their business. So how do you organize in a climate like that? Well, you can identify the people everyone knows...the bar owners, the hair places, the grocery stores, the gas stations...and see if you can train those folks to help pass the word about available help.

We also pondered the start up of a national women’s disability rights listserv. I really hope we can do this because as I am seeing it, a lot of good people are doing good work, but they need to communicate. So it would be good, in my opinion, for this to happen.

So this post is really long, but I want to thank the good folks in Montana for their support and sisterhood and also to Bob for putting up with me as well. I felt very sorry to leave Montana and would love to come back. Did I mention that it’s wildly beautiful there and I saw wild turkeys wandering through Marsha’s yard?