Wednesday, December 3, 2008
How about the story of the Canadian woman whose paratransit driver came back to her house three days after the ride and raped her? He claims his semen got spilled on her couch from a cup of semen he was transporting around to a lab. Sounds like bullshit, huh? Read more at http://icad.wordpress.com/2008/12/01/paratransit-rape-trial/.
Researcher/writers like Dick Sobsey have done great work in tracking the many injustices against women with disabilities, for which I am thankful. I am also thankful for friends like Rosemary and Marsha at the Rural Institute, who provided a heads up on the Korean story.
As a FRIDA member, my question is this: if this happened in your area, what would you do?
Monday, December 1, 2008
To me, it doesn't matter whether you're actually female. Maybe you're a guy. Maybe you're trans or intersex or don't identify as a man or a woman. Maybe you do or don't have a disability. You, reading this, are exactly where the feminist disability rights movement starts---just a person thinking about what feminism is and how that works in disability rights. Let's talk about some questions.
Question: What do feminism and independent living have in common?
Answer: Both feminism and independent living are fundamentally about being able to make our own choices for ourselves. However normally neither acknowledge this fundamental relationship with the other. Within disability rights work, the feminist viewpoint is not often lifted to full view, whereas with feminist work, application of disability rights situations is not often brought up. We have nothing to lose and everything to gain by meaningful work that combines feminism and disability rights with an independent living/disability-led focus. NOTHING ABOUT US WITHOUT US. That is a saying not only for every person with a disability but for every woman too.
Question: Why get caught up in talking about just women with disabilities? All people with disabilities have to struggle for equality anyway.
Answer: Why not use every tool we've got to advocate for a decent life for everyone, including the power we summon when women say, "As a woman with a disability, I am concerned about X, Y and Z"? Half of the human race knows what being a woman means. Why not use our status as women with disabilities to reach out to women policy makers and power holders? And then there are the services and supports we need that men will not pay attention to, things like access to ob/gyn services, and protection against forced sterilization, and self-esteem programs. Very few but we ourselves will fight for those things. Last of all, why hide or deny what we are? We must affirm ourselves as women and as people with disabilities, and feminist advocacy is a way to do that.
Question: Lots of women work in disability rights related jobs. Isn't that enough to cover women's concerns?
Answer: No way. NO. NO. NO. If it really were enough, right now we'd have accessible examining tables and videophones and ASL interpreters at every hospital. We'd have a bias towards supporting community choice rather than institutions. Every shelter for battered women would be accessible. Every new home built in the US would be at least visitable. Every girl and woman with a disability would feel beautiful and sexy and wanted. Every woman with a disability who wanted to work would have a meaningful and well-paying job. Every woman with a disability who wanted an abortion could have one, and every woman who wanted to keep her child could do so. And every woman and girl with a disability would have access to safe, harassment-free transportation options.
Question: What issues affect women with disabilities?
Answer: Violence. Access to every kind of service imaginable. Caregiving and institutionalization. Transportation. Health care. Parenting. Employment. Housing. Overprotection. Isolation. In every one of these issues, women with disabilities face greater inequities and deeper injustice because to be a woman is to be less and to have a disability is to be least (and forget about it if you're poor and a woman of color besides!).
Question: What's the best way to organize work on issues affecting women with disabilities?
Answer: Organize everywhere! At all levels! National, regional, state, local. Systems change and individual empowerment. Community events and lobbying. All of it, everything you can think of. Just remember to share work and thank your friends. We have the whole world of change ideas at our feet and nothing (MORALLY) to lose.
Question: How are women with disabilities in the US different than, say, South Korea or Australia?
Answer: We don't know what the heck we all are doing. There is great work happening all around the country, but nobody knows everyone, and least of all do we have a women with disabilities policy agenda. I want to see women with disabilities be able to come forward and say in two minutes, "As a woman with a disability, the issue of _________ concerns me and this is how I want to see that change happen." Not only do we need to unite our fragmentation, but we need to empower each other to be powerful storytellers and smart change makers. We need networks, as they have in Australia, and we need community, as they are building in Seoul. However we do have a terrifically diverse disability rights community, with advocates working in all sorts of ways, and we can draw on these shared skills and knowledge sets---if only we take the time to do so.
The question now is, what are you going to do to further the feminist disability rights movement? No better time than the present, wherever you are, reading this. Fill in the blank: "As a woman with a disability (or a feminist ally), I want to _________________."
Tuesday, November 25, 2008
So Tuesday morning, I tooled around till 11, where I was meeting Mia at Ria's Bluebird Cafe. I should make a note to readers that if you're ever in Atlanta, stop by Ria's as they have some very very good food. Anyhow, the reason I wanted to meet with Mia is not just because she directs SPARK, but also because Mia is herself a queer woman of color with a physical disability who is invested in intersectional activism---meaning activism from a standpoint of understanding how race, gender, class, sexuality and other social categories suffer (overlapping) oppression.
Anyhow, plus, my friend Stacey said I really, really had to meet Mia. Stacey writes the Miss Crip Chick blog, which is worth anyone checking out.
As it turns out, Mia is a very, very nice woman who had just been through two back to back conferences. Ouch. We ordered some food (and I screwed up my order through a "deaf moment"---hence the plug of Ria's above) and chatted for about an hour. SPARK is the main reproductive justice organization in Georgia and was formerly known as Georgians for Choice. They educate creatively on reproductive justice and collaboratively coordinate different events---rallies, conferences etc. Mia said that SPARK includes disability in their oppression analysis, which is fantastic and I wish more reproductive choice organizations could follow their lead.
We talked about the role of reproductive justice in the disability rights movement. I mentioned that I feel it's been quashed on the general crip radar because of ethical issues that involve assisted suicide, pre-birth bioethics, and the religious right. The question is, do we as a disability community need to agree on pro-choice/pro-life before we can get women with disabilities mobilized together? Mia felt, and I agree, that just because people have differing views on pro-choice stuff, doesn't mean we can't mobilize women with disabilities on the other issues that affect us. However the choice thing does remain the big pink elephant in the room.
While talking with Mia, I realized that though she doesn't do only disability-specific work, she is familiar with a number of folks I know in the disability community (like Eleanor Smith), which is great. If you are reading this post and you live in Atlanta, please consider looking Mia up to see how her organization's work intersects with your own. I had the impression from talking with her that she's someone who is very progressive and cares a lot about community building. People like Mia and her colleagues are the kind of folks who will help our movement grow.
While we were only able to meet for an hour, I am thankful we did so. Mia also assisted me in trying to contact Project South, because I'd had no luck in contacting them (and sometimes, hearing folks only respond to voice phone calls). Turns out they were pretty much out of the office that day---I'll check in with them in the future. Bummer. But, here is a picture of Mia calling Project South for me:
One other thought about Mia's work: this consciousness of intersection is something that is very important to younger US activists with disabilities. We ARE intersections. From my perspective as a youth leadership coordinator in the disability community, I don't see this as a trend---I think it's actually a direction. And it's not just a direction for the disability community, it's a direction for the US as a whole.
Afterwards, I had pretty much the whole afternoon open, and I was planning to visit the King Center some more, but unfortunately I was coming down with a cold and opted to spend a few hours trying to get some rest. After that and lots of medicine, I prepped for the Charis event over in what I was told was Little Five Points, two minutes away from Druid Hills.
Mark Johnson had directed me to Charis, a non-profit feminist bookstore that coordinates different speaking series and also a review. Kerrie Lynn, who also happens to be on SPARK's board, coordinates a series on disability and feminism, so she and I worked together to arrange a community discussion. I am really thankful to Kerrie and Charis for their support for the event, including finding two interpreters to help me out. I think it was the first time I'd ever done organizing work in a bookstore, so I wasn't sure what to expect, but it turned out really well. Mia wasn't able to make it as she had two (!) meetings that evening, but she was missed! :)
About 15 folks showed up, and initially I gave my spiel about FRIDA and my project, as well as ADAPT and Access Living. Then, I asked people to shout out issues that they thought were important for women with disabilities, and they came up with:
...parenting, especially parents rights vs. the state child protective services people
...housing and visitability
...access to health care
...sex (and really this was the first time in my project that a group talked a lot about sex, but I suspect it was because Bethany Stevens was there, and this is her #1 issue of interest!)
So we discussed these issues and how they were affecting women in Atlanta, and I talked about how different sorts of systems control these things---federal, state, local, and even agencies that are not government agencies but exert control over our lives. A lot of women took it on themselves to speak up about different issues, and I pointed out that in case they were wondering what the feminist disability rights movement looks like, it looks like THEM. US. And so we wrapped up the evening by offering an opportunity to maybe start a listserv via email about feminist disability rights activism. So Atlanta did a great job!
Here is a picture of folks at the gathering at Charis:
I was also happy that Eleanor and Barb came from Concrete Change, as well as Zan Thornton. It's always good to see long time activists (disability or feminist) mingle with people who are exposed to disability rights activism for the first time, or feminist activism for the first time. Plus, I think the group had more people of color than most other gatherings I have gone to in the last couple of months, so I am very intrigued by Atlanta's possibilities to say the least!
Afterwards I hung out with Bethany and another woman at a bar next door to Charis and talked for a while, which was overall a very nice ending to my Atlanta visit. I'll be thinking of ways to keep the seed growing...
For example, I noticed that in the last two days there was a spike in readership from South Korea, so to whoever is reading from South Korea, thank you! I've also noticed quite a number of readers from Australia, New Zealand and the UK, and I thank all those readers as well---good morning to you all (whatever time zone you're in)!
Since I set up this blog back in September, I've also noticed visits from Lebanon, Finland, Russia, Denmark, Brazil, Canada, the United Arab Emirates (yep, Dubai!) and others. I even noticed someone visiting from Iran, which surprised me given the reported serious Internet censorship of browsers---I understand even searching for a word like "woman" gets blocked. It's rather cool because the Farsi cyber community is one of the largest in the world. Obviously, Farsi rocks. I have not noticed any visitors from Africa except maybe two, but Africa has the lowest density of Internet users in the world.
And of course I must also thank all American visitors and my 26 friends who have subscribed to Ambertracker punishment via e-mail. ;)
I thank you all for your interest in the struggle of women with disabilities and Deaf women, and hope this blog helps gives readers some ideas for taking action! Onward to more posting...
Sunday, November 23, 2008
I recall thinking that Dr. King did a lot of the vision work, but the folks who got the grassroots to turn out by the hundreds and thousands were the real organizers. Nobody knows the name of whoever said, “Let’s boycott the buses in Montgomery---what resources do we have?” Civil rights grassroots wins happened in large part because of the nameless many church folks and the community groups---they were the organizers of people and time and money, and Dr. King was best at empowering the many to find words for their one cause, because ultimately he spoke from his heart as a leader.
In Atlanta, not only was I lucky enough to meet with Eleanor (who I think balances both organizing and leadership), but I also spent the afternoon of Monday, November 17, with Mark Johnson, a disability rights organizer with ADAPT since the early 1980s and Advocacy Director for the Shepherd Center. In addition to talking disability shop, Mark also took me over to visit the Dr. Martin Luther King Center. Back when I was planning this trip, Mark actually ASKED why my original itinerary did not include Atlanta, so it’s really thanks to Mark being a squeaky wheel that I ended up here.
So I Mapquested my way over to the Shepherd Center, which is a spinal cord, traumatic brain injury and multiple sclerosis rehab center. The Shepherd Center was founded back in the 1980s, at a time when there was no real rehab center for spinal cord injuries in the South back then. For a rehab center, I like that it resists the institutional bias to a degree with progressive programs like a gym that is open to the public, not just patients. It also has a Bridge program where counselors follow the progress of each patient for one year after they leave the Shepherd Center, in order to ensure the patients achieve real reintegration into their communities and aren’t just dumped off once the docs are done patching up their spines. Plus, Shepherd has a women’s peer support group that meets once a month, and Mark introduced me to its coordinator, Minna Hong, who is an awesome woman in her own right and with whom I hope to work more with in the future.
Mark himself has been a quad since the age of twenty (he pointed out that SCI is a male-dominated disability). As Advocacy Director for Shepherd, Mark keeps track of local and federal legislation, as well as issue trends. In addition, he connects people and groups with decision makers to create change. In short, he is an organizer. Read more about him here.
In the course of our conversation, Mark uncovered that I’d somehow (amazingly) forgotten to make plans to go visit the Martin Luther King Center. I couldn’t believe it. I think I got majorly distracted while blitzing from Sydney to Wellington to Sydney to San Francisco to Berkeley to Phoenix to Atlanta in something like five days. So Mark offered to take me over and have a look at some sights in Atlanta as well as the King Center, and we hopped in his van and went.
Our first stop was over near the CNN headquarters at Atlanta’s central plaza, where believe it or not ADAPT has a brick in the pavilion. Here’s a picture...look for the brick that says ADAPT USA:
We then zoomed past various buildings of ADAPT interest, and past the Georgia state legislature building (the Georgia state legislature is in session three months of the year, in case you were wondering over there in Texas where your state legislature is in town two months once every two years!). The King Center is within easy driving distance of the city center, with Dr. King’s boyhood home, tomb, the two Ebenezer Baptist Churches, the Center for Nonviolent Social Change and the actual King Center itself all within two or three blocks on Auburn Street.
At this point Mark informed me---not without a gleam in his eye---that right next door to the King Center is nothing other than a NURSING HOME! I thought he was kidding me, but nope, saw it with my own eyes and here it is, Parkview Manor:
Just another nursing home, right across the street from Dr. King’s tomb. Do you really think the world would have let Dr. King himself live in a nursing home? I don’t think so! If we wouldn’t have liked it for Dr. King, why should it be ok for anyone else?
Mark dropped me right off at the King Center because it was closing in about fifteen minutes, and when I ran in I found myself right at a life size model of marchers, one of whom is an amputee, as seen in the photo below:
I wandered around a little bit, and then Mark came in from parking the van and asked if I’d seen the marchers---yep, especially the amputee one? Good to see crips representing! As the museum then announced it was closing, he took me over to Dr. and Mrs. King’s white marble tomb, which is situated in the middle of a reflecting pool. Dr. King’s epitaph, in his own words, reads, “Free at last, Free at last, Thank God Almighty, I’m free at last.” Mrs. King’s epitaph reads, “And now abide Faith, Hope, Love, These Three; but the greatest of these is Love.” Here is a picture:
Then we took a look at the Eternal Flame by the tomb site. And here is a picture of Mark zooming off in the direction of the old Ebenezer Baptist Church:
Well, visiting the King complex reminded me that I've visited the Lincolns' grave in Springfield, Illinois, and the graves of the Kennedys at Arlington, not to mention Emma Goldman and Mother Jones. And you know what I think? I think that even though the disability rights movement has suffered so many passings itself, I am grateful that our movement is alive and growing after over forty years, and that we younger folks have the benefit of guidance from people like Mark, as well as Bob and Stephanie and Peg and Marsha and Rosemary and Mike E. and Nadina and Laura and Robin and Eleanor and a whole bunch of living, breathing people who fight hard and care deeply.
The movement may not in the future look as it has looked in the past, but as we see laws defeated and narrowed by the courts, and as greater and greater numbers of young people pass through the public education system and fail at basic independence despite society's promises of empowerment, and as we die and suffer under our current health care system, people with disabilities will continue to find new, renewed opportunities for making change together. We do, however, have to work conscientiously---fighting for women as well as men, as well as trans people. Perhaps thinking about a movement is what makes it so...if that's the case, then I at least intend to keep my faith in the varied abilities of my friends and colleagues who work for the cause, of all genders, of all perspectives, of all origins.
What is visitability? Well, last Monday, November 19, I met with the woman who came up with the idea back in 1988. Eleanor Smith was an ADAPT activist helping to fight for accessible buses back then, and one day she had an idea, which was: what if all HOMES were accessible? And what if federal, state and local regulations could make them so?
Visitability, as conceived by Eleanor and the people at her organization, Concrete Change, is the idea that all new homes should have three things: one zero-step entrance at the front, side or back of the home; a bathroom or half bathroom on the entry level; and at least 32 inches of clearance on interior doors. Simple. If a builder does this when building a home, not only does it save thousands of dollars on later modifications for physical impairments, but it does the following:
• Provides more housing options for women with disabilities who must escape a violent/abusive living environment *FAST*
• Saves single women and mothers from potential financial ruin due to the cost of modifications, should a member of the household become physically disabled
• Allows all people to actually visit one another’s homes, to go trick or treating or have a party or check out your child’s playmate’s home---ending social isolation, the number one foe of women and girls with disabilities
Visitability does not mean building fully accessible homes, but it improves the social flow of who is able to actually go into each others’ homes. As an ADAPTer I have heard several women with disabilities say that they don’t know their neighbors because their neighbor has one step at every entrance to their home. One step.
So why do builders hate the whole visitability thing? Good question. When Concrete Change has been able to have talks with individual builders, the builders often are open minded to the idea of visitability. Concrete Change actually partnered with Habitat for Humanity Atlanta to build 800 visitable homes in the area, to date. People like the mother whose son got shot, became a paraplegic, and came to live with his mother are extremely grateful for the visitable features.
And, Eleanor and two collaborators published an article in the summer 2008 edition of the Journal of the American Planning Association titled “Aging and Disability,” which demonstrated that over the lifetime of an American house, there is a 60% chance that that house will have a resident with a disability. The article is fantastic and has gotten almost zero buzz. What is going on?
It seems that really, the problem is that builders just wanna build what they wanna build. According to the JAPA article, “Visitability legislation is controversial because it raises issues regarding the individual rights of property owners, the civil rights of disabled persons, and the proper role of government.” Builders have contested and continue to contest every ordinance (in Atlanta, San Antonio, Chicago, Lafayette CO and the states of Georgia, Texas and Kansas). The National Association of Home Builders isn’t down with visitability. I guess they like making stairs... Well really, I see it as a problem of perception.
And yet I see that visitability works, as clear as day, when Eleanor took me around the housing development where she herself lives, where all the homes are visitable. I can see for my own self that everyone, from little tiny crip kids to really old folks, can get in and out of these homes, even though it’s built on a combination of flat and hilly lots. It is a regular type of housing development with toys and plants and autumn leaves scattered around.
And I can see the visitability just as clearly when Eleanor took me over to a Habitat development, also on both hilly and flat lots. Worried about a slope? Put the driveway at the tope of the grade and have the accessible entrance be on that side. Worried that the houses will be ugly? These homes are cute and if they do have ramps, the ramp is integrated in the design. I would personally love to be able to live in such a development with my disability community friends and have us be able to visit each other all the time. Here is a picture of a Habitat home built on a slope:
I think that not to use visitability in home design cheats America, and in particular it cheats women.
There is policy designed to mandate visitability across the US, and it is called the Inclusive Home Design Act, first introduced in 2003 by Representative Jan Schakowsky of Illinois. This bill would require a zero-step entrance, 32 inches of clearance for doorways on the main floor, and a bathroom that can accommodate wheelchairs in all new single-family homes built using federal dollars. Note the using federal dollars bit---it doesn’t cover homes built using entirely money.
So while I know that right now, folks are scared about the economy and jobs, and that polticians are going to be full-frontally focused on that for quite a while, I urge feminists with and without disabilities to put visitability and measures such as the Inclusive Home Design Act on your agenda. Do this not only for people with disabilities and seniors, but for all women. Talk to anyone you know who is building a home or homes, and explain how they can make the world better for women by using three simple concepts.
Many thanks and warm wishes to Eleanor and Barb and Concrete Change in their work, and particularly thank you to Eleanor for your time in educating me (and recommending a play to stay while in Atlanta!). Here is a picture of Eleanor in front of a visitable home, holding up the ADAPT DUHcity action tshirt (our last action was about housing):
In closing, I would also like to dedicate this post to disability rights activist Ricki Landers, who passed away a week ago. Ricki was a warrior with Salt Lake City ADAPT and such a tough woman that she once held up an entire intersection on her own in her struggle to free her ex-husband from a nursing home. Ricki, your scratchy voice and your drive will be missed, and I will always remember your yelling at the cops to COMMUNICATE with me in front of the state legislature in Nashville. FREE OUR PEOPLE!
Thursday, November 20, 2008
At this point I've flown 22 flights as part of this project and fear I may be developing an allergy to airlines... well, I'll get over that but it is quite a lot of flying. I also came down with a cold the last couple of days, so it's just as well I'm away from most of civilization at the moment. I do very much appreciate the messages of support I have received via e-mail and it is very inspiring to see how much people support the advancement of advocacy by and for women with disabilities. It is so so cool. I am amazed by all my hosts' generosity in things like feeding and housing me, which helps me stretch my grant just that much farther to do more work with more women.
I think perhaps I am also in existential crisis mode. As in: having seen so many "homes" of the disability community, and such different kinds of work going on in so many places, and such enthusiasm with so many warm and hard working people, where the hell do I want to be and work (and live---I'm terrible about forgetting "me" time)? Yes, Chicago is my home right now, but also I realize that the disability community is everywhere---and that the number one mechanism women with disabilities need right now is some kind of way to stay connected and organized. So what is the best way to do this, in a way that empowers all of us and isn't all about me being everywhere? Comment or email with ideas!
Monday, November 17, 2008
At PWD, I met with co-director Therese Sands and four members of the advocacy team, including Denise Beckwith. My colleague at Access Living, Kim Borowicz, used to be an intern here, so Kim, PWD says HI! Anyway, PWD engages in both individual and systems advocacy, and also does litigation. In this sense, the organization reminds me of a Protection and Advocacy agency in the US. However, PWD is a coalition of disability organizations and people with disabilities, and in Australian parlance, it is a “peak” organization. I believe this means it’s at the top of the network hierarchy.
One of the first areas of concern we addressed was deinstitutionalization, a major area of work for PWD. Therese said that while Australians have fought for years for the government to end the institutional bias, these days they are seeing a new trend back towards reinstating that bias. In other words, funding for community integration is being cut or not matched by state governments, and the size of group homes recently increased from 3 to 5 residents. PWD is fighting to stop these efforts.
The PWD team also gave me the basics on boardinghouses. Boardinghouses are for-profit private businesses that house people with disabilities who need minimal supports, such as a routine doling out of meds. In exchange for these minimal supports, residents get a bed in a shared room to sleep. Boardinghouses house between four and 105 residents, and cost between 85% and 100% of a resident’s Disability Support Pension (DSP), which is the Oz version of SSI. Boardinghouses have been known to use chemical restraints, as well as financial, psychological and physical abuse. PWD’s position is that boardinghouses should close, with no licensing of any new boardinghouses. Basically boardinghouses smell a lot like nursing homes or some ICF-MRs.
I asked about PWD’s avenues of advocacy, and they tend to work though the directors-general or ministers of different agencies, or meetings with political officials such as leaders of the opposition party in Parliament. On occasion there will be Parliamentary inquiries into issues affecting people with disabilities, and PWD will testify. Members of Parliament don’t really represent a constituency in the manner we are used to in the US, however---the way to influence MP is to control party politics.
Back to boardinghouses---in the state of New South Wales, there are 45 boardinghouses with a conservative estimate of 1,000 residents. PWD began getting involved with deinstitutionalization in 2001 or so, because there were boardinghouse closures and PWD was assisting individuals in the transition process. As it turned out, PWD uncovered a lot of abuse and intimidation and was motivated to pursue systems advocacy.
Disability and parenting is another issue of concern at PWD, especially lack of parental support when either the children or parents have a disability. PWD is also concerned about kids with disabilities who just get left in facilities because their parents can’t figure out how to care for them. So they work with individual families to help them navigate systems. For parents who have psychiatric or intellectual disabilities, the state will label them during their pregnancy. Because the parents are labeled high risk, the state may attempt to take the children away. There is an over-representation of these types of disabilities in parents involved in the state child care system.
A slight digression---I asked the team about their volume of clients. Denise Beckwith, who handles intake, says she gets about 40-50 calls a week from the main line, and there is an active list of about 200 clients.
Another of advocacy PWD addresses is home modifications---which I personally have to say looks like a nightmare given the age and small proportions of so many buildings in the Sydney area.
I then asked about PWD work that specifically has affected women with disabilities. They have had a project on sexual assault, and have done work to prevent domestc violence. There are no women’s support services in NSW that are accessible for women with disabilities. PWD has worked with the women’s field sector on CEDAW, which process allowed for inclusion and education on disability. PWD has a new effort they are working on to train women on their rights, so hopefully we will be hearing more about that good work soon. The team also mentioned that in the past they have done strong anti-sterilization advocacy, raising the profile of that issue in the human rights sector.
The final part of our conversation was on multiculturalism and diversity. PWD is co-working with Aboriginal peoples and about 20 to 25% of the consumers are Aboriginal. Many others are from Asia or Pacific Islander groups. PWD has also worked in the past with the LGBTQ community, for example helping to identify legislation that would affect LGBTQ people with disabilities. They do not exactly serve Deaf people but have a working referral relationship with the Deaf Society of NSW. PWD focuses on cross-disability work but will support other groups with a specific-disability focus.
With Aboriginal peoples, the point I was advised to remember is that there are many Aboriginal groups with a lot of diversity. There usually isn’t a word for “disability” or disability is not recognized. There is a great need for education among Aboriginal folks on what disability means, and also among for examplemedical professionals serving Aboriginal peoples because the med folks don’t really understand how to handle disability either. Disability services for Aboriginal people are still very, very new.
At this point, we ended the meeting and I took a pic of the team, which I will post at the end of this month when I am not using dial-up from rural Arizona. I then went off to eat lunch with Sharon, her sister in law and Sharon’s niece. While hanging out with them I found a brand new pair of pink sparkly Converse shoes, which was great because my old silver ones were cracking apart. Unfortunately lunch took a bit longer than we expected and Sharon and I were a bit late getting over to SPRC to meet with Karen Fisher and her colleagues.
The SPRC meeting was, I think, the first one that I’d had in a specifically academic setting. As an activist, I’m aware that quite often researchers and activism go very well together, and at other times they have a falling-out. SPRC research has assisted groups like PWD to prove their case before the government. Getting the numbers on disability discrimination is critical. Anyway, Sarah Parker, a disability studies professor at the University of Illinois at Chicago (who happens to be from Australia), recommended I meet with Karen Fisher and the SPRC bunch, so we set it up. Karen met me with three of her colleagues, one of whom worked on PWD’s sexual violence project, so that was very cool. In addition Karen herself has done research on women and disability and it was a pleasure to talk with her. Her other two colleagues have done more work on young people and disability, especially assisting parents of children with autism to navigate services, which is an incredibly important job. The following day, I was to meet with Helen Meekosha and Leanne Dowse, so I tabled some of my questionson sexism and disability until then (unfortunately, that meeting fell through especially as Helen was sick). But I was very interested to learn about disability research being INCLUDED under a general social policy research agenda! See, THAT’s how academic priorities should work---disability should ALWAYS be at the table. Many thanks to Duncan Aldridge for helping to coordinate all of this.
Finally, and I know this is turning into a verrrry long post, Sharon and I shopped for goodies for a showing of the Fe Fe movies at Sharon’s home. She had organized a bunch of her friends and colleagues to come over and I think we had about eight or nine people come overall. And so we ordered LOTS of pizza and watched all three of the videos! And then we topped it off with tea and Lamington cakes (go Google that!). What did the group think of the videos? Well, they liked that the Fe Fes address a lot of topics that would normally be considered taboo (like, uh, well, how to put a condom on with your mouth). They also liked the street scenes and the realness of the film. One feedback was that perhaps the films could be edited to be more inclusive of people with cognitive/intellectual disabilities. Good point, and something for consideration for any film. I thought it was a terrific way overall to cap off my last evening in Sydney!
Sharon dropped me off at Glenn’s office in the morning, which is situated in a 1930s Art Deco style complete with a clock tower and a ball room, not to mention an old fashioned coat check in the ladies’ room. Glenn turned out to be a ponytailed guy with a physical disability who uses a wheelchair, and we met in the Amenities Room, which was nice and quiet for me (except for when planes blasted by overhead due to the building being in the Sydney Airport flight corridor).
Marrickville City Council administers several neighborhoods in the Sydney area, such as Petersham, Dulwich Hill, etc. Glenn’s job is to help get the city to be inclusive of disability perspective in its projects, for example working on transportation or other forms of community development. In addition he helps educate community organizations about disability. The Council has twelve elected members. The Council does not focus on individual case work for people with disabilities, but if an individual comes to Council workers with a problem, they refer them as best as they can. The Council’s area is in a very old and often cramped part of town, so one issue has been making things accessible when buildings have been existing for decades.
I asked Glenn about what he thought about the Disability Discrimination Act (DDA). He pointed out that the DDA is structured so that an individual must produce a really solid case of disability discrimination before the court in order for any action to take place. Instead of having built in pre-emptive standards as the ADA does, the DDA forces individual cases to set standards, but it’s a long shot for most people to build a legally viable complaint case. It’s good that there is a complaint mechanism, but the burden of proving a solid case really weighs heavily on the individual bringing the complaint. However if a complaint does make its way through the court and discrimination is found to have reasonably occurred, then the court’s decision in that case will set a precedent. Sure seems like a long and roundabout way to make change---granted, I’m super impatient.
Glenn also said that City Councils tend to vary in their quality of workers and services provided, so that disability access work is not standardized across Councils. There can be not only variations from town to town, but regional, rural or urban variations as well.
We also remarked on the “tall poppy” situation. I’d previously read that there was a stereotype that Australians make a national sport out of “cutting down the tall poppy;” that is, cutting anyone down to size who is either full of crap or dares to be too different. Glenn agreed that he thought it could be quite an issue at times and we discussed whether in fact the tendency to denigrate anyone who takes risks or does new things is actually detrimental to the disability community, insofar as it is so critical to build creative leadership.
My overall impression of the role of City Councils for disability in Australia is that they afford an opportunity for community education and partnership, while having somewhat limited powers at times (such as not having any jurisdiction with schools for example). I also got the impression that Glenn, and others that I met, would like to see greater development of leadership and greater freedom for individuals to break barriers and make change, but that this is a cultural struggle. I had a very good time discussing these issues with Glenn and was only sorry that I had to move on to my next meeting afterwards. Thank you Glenn!
After scaring up some lunch in Marrickville (did you know Australia has a HUGE cafe culture??) and riding the bus all on my own back to Sharon’s house (and getting sunburned---the sun here is very strong), Sharon and I headed over to Dougie’s office building near the Central train station in Sydney. The Disability Council of NSW is the official group that provides policy recommendations on disability to the state government. It has several member organizations. Dougie himself is a wheelchair user and is originally from Scotland. I think several people were anxious as to whether I would actually understand Dougie’s accent, but we did pretty well as we stayed in his quiet office.
Here is the stunning thing about the Disability Council: take a look at its Board of Directors. It is unusually culturally diverse for a disability rights group with a large chunk of people from non-Anglo backgrounds. Not to mention, they have lots of folks with disabilities on the board. Very awesome! I asked Dougie how long there had been a diversity effort on the board and he said pretty much since he came on board a few years ago. Dougie himself, as it turns out, used to be an anti-apartheid activist back when he lived in Scotland and believes deeply in equality among all people.
Also, I love that the Council has developed policy portfolios on many different issues and a lot of these are online, which helps to build transparency in advocacy work. Very excellent. I asked Dougie about the DDA as well, and he highlighted the fact that a person with a disability needs money to file a legal complaint using the DDA and to pursue it through the court system. The DDA is thus only usable by those with funds.
We also discussed the overall picture of the Australian disability "community." In Australia, most of the population is concentrated in the cities, which are usually on the coast. Geographically, these urban centers are far apart from each other, so a major obstacle towards a national disability community is the difficulty in physically travelling between places. This leads to a more fragmented disability picture.
In addition, disability as a topic of national discourse tends to be dominated by the disability sector, those working in fields serving people with disabilities. The disability "community" itself does not in fact dominate discussions about disability. It is difficult to build a sense of grassroots community not only because of physical distance, but also because there is no sense of shared history as a community and no grassroots movement emphasizing change. Part of the reason there is no grassroots movement, as well, is due to the aforementioned "cutting down the tall poppy" issue, as well as people not liking to ask for help.
To me, this is different than the US, where we have a well established and shared view of a disability history, which we are working to teach our young people. We also have more people with disabilities who are physically closer to each other, as well as a network of over 500 CILs or ILCs nationwide which serve as disability-run gathering points for the disability community. Also, we have a lot of advocates who adhere to the saying "nothing about us without us" and actively seek to make the disability voice heard on every issue that impacts us.
I found it incredibly useful to speak with both Glenn and Dougie on these points, because somehow there's nothing like comparing systems to help one realize what is and is not working in one's own community. Many thanks to Glenn and Dougie, and Sharon as well, for educating me.
Sunday, November 16, 2008
Random thoughts related to travel:
Did you know koalas grunt? Apparently they were keeping folks awake at the retreat in Port Stephens---I didn't hear anything because I take my hearing aids out at night. The next morning people were complaining about the koalas.
Did you know the candy Turkish Delight can set off TSA monitors? This happened back at the Oakland airport this morning. I was surprised....but then again it's a rose-flavored jelly candy covered in chocolate. It's popular enough in Australia, as is Violet Crumble. I had fun trying new candies there.
Did you know New Zealand women were able to vote back in 1893? Maori men were also voting by then as well. In contrast, Australia did not grant Aboriginal peoples citizenship until 1967! Women could vote in Australia in 1908 though, years before the US got around to it.
Oh, one other thing---if you are in the Atlanta area, come visit with me at the Charis Circle on Tuesday at 7 pm, where I will be talking about feminist disability rights organizing. Charis Circle is at 1189 Euclid Avenue NE, Atlanta and they are being very nice about hosting this event. Thanks to Kerrie and staff!
Friday, November 14, 2008
I did have two interpreters today, the one from yesterday and a different one who was much less familiar with ASL---but both were really good sports about it all and it was fun to exchange ASL and NZSL signs. Thanks to Alan and Bridget and to Carol for finding them!
After doing some frantic morning shopping for NZ stuff to take home, I participated in...
....a discussion about developing Maori disability leadership
...a discussion about women's disability rights in New Zealand (the US and NZ share many concerns but primarily women need to think more critically and be more proactive about women's disability rights....some good ideas were bandied about for keeping women with disabilities informed about work that connects them)
...a discussion about disability rights in different countries
All of these talks were pretty fabulous in that I learned things at each one, though perhaps from a different perspective as an American disability rights activist and as a deaf person. I had the impression that CCS Disability Action folks are very much finding their way in a country where PC-ness is valued and people are very nice. We had a lot of Maori inclusion though a few culture clashes, I believe, but how else do we learn but through our mistakes? Some examples of Maori cultural inclusion include braiding in the use of Maori prayers and songs, and ensuring circular gatherings to talk (I think). I think the opportunity to speak to anyone you wished was well presented and I very much appreciated the chance to get to know different folks in NZ. Of course I wish I could have stayed more than two days, but now NZ is on my list of places to visit (again and for a longer time!).
I did eat kumara which is a sort of sweet potato that was originally more used in Maori culture I think. Lunch included for example fried fish and kumara. Pretty good stuff!
Speaking of food, we wound up the day with a big dinner and dancing. I met some very fabulous people and together we witnessed a very interesting sort of eggplant roll and baked curly potato things.
This entry is to be a bit short because I have to wake up in about four hours to leave for the airport, but as I process my thoughts over the next few weeks and begin blogging more reflectively, I will be carrying the lessons learned here in New Zealand. I learned that an important Maori concept is the idea of koru, which is both a visual symbol and the idea of the force that unfurls new fern leaves. So I will let my mind percolate and see if I can have some koru of thoughts on furthering disability rights! Also, I liked that in our welcoming ceremony yesterday we connected not only people past and present in our meeting space, but we also connected with the stars.
And now to bed, and then to San Francisco....
And PS Naomi---your folks found the CCS Disability Action conference at the Te Papa and left word to say hi from you! So hi back!
Thursday, November 13, 2008
Voiceless and Abused: Woman allegedly raped by caregiver may have been attacked before
By RUTH TEICHROEB P-I INVESTIGATIVE REPORTER
To her attacker, Jamie must have seemed like the perfect victim: blind, nonverbal, infantlike in her mental ability and utterly dependent on her caregivers.
But her body revealed what she could not say -- that someone had raped and impregnated Jamie in her own home. When she miscarried in March, a DNA match pointed to a nursing assistant at Integrated Living Services in Kent.
It wasn't the first time that a nursing assistant at that agency was suspected of sexually abusing Jamie, records obtained by the Seattle P-I show. Two years earlier, a different man was named as a "person of interest" in a police investigation that was dropped for lack of evidence. State officials determined that the agency had followed regulations and required no additional safeguards.
That proved disastrous for Jamie. And it highlighted troubling gaps in Washington's system of protecting vulnerable adults, from questions about whether male caregivers should work alone with vulnerable female clients to the adequacy of state oversight of home care agencies and their employees.
"I feel so betrayed," said Bessie, Jamie's legal guardian, who asked that her last name be withheld and that Jamie be identified by her middle name. "I trusted them with my daughter. They made me guilty, too, because I could not protect her."
Bessie suspects her daughter has been raped not once, but three times, while in the care of state-funded providers.
She first met the tiny, frightened Jamie while working as a school bus monitor in 1976. "This little blond girl screamed and cried every day on the bus. My heart went out to her. I'd hold her hand and walk her in to school," said Bessie, whose own daughter is developmentally disabled.
Jamie, who was in foster care at the time, had a history of neglect and malnourishment. Bessie soon became her foster parent and married the girl's father in 1978. When they divorced, she remained Jamie's legal co-guardian. Bessie is the only mother Jamie knows.
As a teen, Jamie spent more than a year at Fircrest Residential Habilitation Center, an institution for the developmentally disabled, when Bessie was too ill to care for her. During a visit home, Bessie noticed bruising on Jamie's thighs and upper arms. While a medical examination was inconclusive, Bessie believes that she was sexually assaulted.
In January 1983, Jamie moved into supported living in the community with Integrated Living Services, the same nonprofit that would provide services for her for more than two decades. By 2002, she was living in an apartment with two other developmentally disabled clients. The agency provided 24-hour care, hiring nursing assistants who did everything from help with showers and dressing to buying groceries and making meals.
Jamie seemed content in her apartment and grew attached to her regular female caregivers, who indulged her love for spicy Chinese food, popcorn and hand-clapping games. She hummed when happy and shrieked when she was not.
On Feb. 6, 2006, one of Jamie's caregivers noticed odd bruising on her right inner thigh in the shape of fingerprints, according to Department of Social and Health Services and police records.
The next morning, the caregiver found another bruise and scratches on her upper inside arm while bathing Jamie, who seemed moody.
One of the weekend staff members had also reported that she had stripped naked and lain "spread-eagle" on her bed. The agency notified Adult Protective Services. A day later, staff members took her to Harborview Medical Center, where she had to be sedated for a rape exam.
Kent police began investigating.
"It was an awful experience to go through," Bessie said. "The state said, we're sorry, this will never happen again."
The agency's program director, Kenneth Abercrombie, told a detective that they suspected sexual assault because the bruises on Jamie's groin looked "like someone had grabbed her" and, along with those on her arm, could not have been self-inflicted. He said a male nursing assistant had filled in on the weekend night shifts. The man, who was still on employment probation, had just been fired for unrelated "poor performance," Abercrombie said, according to police records.
The rape exam, done at least three days after the man worked with Jamie, found no physical evidence, and police closed the case without interviewing the "person of interest."
An investigator from Residential Care Services at DSHS determined that the agency had followed regulations, from doing criminal checks on staff members to training on how to report abuse. "We didn't find that they were doing anything wrong," said Sheldon Plumer, quality assurance administrator of Residential Care Services.
The state investigator did not look into the allegation against the man. Soon after that, the state began requiring investigations of in-home caregivers named in abuse complaints. Agency staff members told Bessie that the man had returned home overseas.
Convinced that Jamie had been sexually assaulted, Bessie said she asked the agency not to let male nursing assistants work alone with her when her female staff members were off. She said officials balked, saying they could not afford it.
"There's no regulation that males can't work with females," Plumer said. "Under the current guidelines, I don't think there's anything else we could have required of the agency."
In late January 2008, staff members took Jamie to the doctor because she wasn't having regular menstrual periods. She was sleeping a lot and seemed out-of-sorts. The doctor referred her to Harborview because she would need to be sedated for a gynecological exam -- an exam that was never done. No one suspected that she was pregnant or tested for it. They thought she might be pre-menopausal.
On March 18, Jamie began moaning and bleeding so heavily that staff members took her to the emergency room at Auburn Regional Medical Center. Doctors determined that she was miscarrying and notified Kent police. Abercrombie, the agency's program manager, called Bessie with the bad news.
"I was shocked," Bessie said. "This was the second time in two years. I couldn't believe it was happening."
Late that night, the hospital sent Jamie back to her apartment. "All I'm thinking is, you don't take someone back to where they've been raped," Bessie said.
The next day, Bessie had Jamie moved to the Fircrest infirmary. Fircrest sent Jamie to Harborview, where she underwent a surgical procedure. Doctors estimated that she had been 12 to 16 weeks pregnant when she miscarried.
DNA evidence was sent to the state crime lab, and police obtained voluntary DNA samples from at least 10 male staff members who had had contact with Jamie in recent months. Among them was a nursing assistant who had quit less than a month before being charged with second-degree assault for allegedly attacking an autistic teenager at another facility.
Two days after Jamie miscarried, Integrated Living Director Greg Miller wrote an irate e-mail to DSHS objecting to Bessie's decision to remove Jamie from their care. "It is an incredibly violent emotional action for both (Jamie) and our staff," Miller wrote. He said the agency "has taken the correct steps and actions" at every point.
A state investigator again found that the agency had followed regulations. But until a suspect was identified, the state told the agency that male staff members were not allowed to work alone with female clients. On April 7, Miller asked the state to lift the double-staffing rule, saying it was too costly. The state refused.
Joseph Thurura, 31, a nursing assistant, pleaded not guilty in July to second-degree rape. He is being held with bail set at $250,000. On June 17, Kent police got the DNA results and arrested Joseph Thurura, 31, a registered nursing assistant who had worked at the agency since immigrating to the U.S. from Kenya two years earlier. During a police interview, Thurura calmly denied raping Jamie, whom he had worked with occasionally as a "float" for regular staff members. He was jailed with bail set at $250,000 and pleaded not guilty to second-degree rape.
Thurura's attorney, Sandro Parrotta, refused a request for an interview with his client, who remains in jail.
Miller, of Integrated Living, also refused to be interviewed. "Throughout our history we have always done everything we can to hire the most qualified, most trustworthy staff possible, and we will continue to do so," he wrote in an e-mail.
The months since the miscarriage have been tough for Jamie. During one visit with Bessie in September, Jamie was inconsolable, wandering restlessly and making tortured sounds.
"What are you trying to tell me?" Bessie whispered, as Jamie laid her head on her mother's shoulder. "You're not feeling good, are you?" Soon after that, doctors diagnosed Jamie with gestational trophoblastic disease, a serious medical condition in which benign tumors develop from placental cells. Jamie is now undergoing treatment.
No one knows how long Jamie endured the abuse before she got pregnant.
"The obvious question is, if they don't get pregnant, how do we know?" said Dick Sobsey, a Canadian expert on violence and disabilities. "Many of these cases are just never uncovered."
One of the biggest barriers to protecting vulnerable adults from sexual abuse is that "nobody wants to believe it's going on," said Ann Burgess, a professor of psychiatric nursing at Boston College and a national expert on trauma and abuse. "There have to be very strict guidelines. I firmly believe you have to stop the offender. You can't expect the victims to protect themselves because they can't."
That means creating tougher standards for supervision, training and screening of nursing assistants.
To become a registered nursing assistant, Thurura had to take brief AIDS training and pass a national criminal check -- a screening that meant little because Thurura had just arrived in the U.S. on an immigrant visa. To get a green card, Thurura would have had to submit a Kenyan police certificate showing he had a clean record, a State Department spokesman said. The reliability of foreign police certificates varies, according to a 2007 government report.
A ballot initiative that passed last week, Initiative 1029, will boost training for caregivers, including registered nursing assistants, to 75 hours. A second category of certified nursing assistant already requires 85 hours training and an exam.
When problems do arise, disciplinary actions against nursing assistants are rare. Less than 10 percent of nursing assistants have had their licenses revoked since 1998, according to a Seattle P-I analysis of state Health Department data.
Disciplinary actions are increasing, resulting in revocations or suspensions 39 percent of the time over the past year, said Health Department spokeswoman Allison Cook. Sexual misconduct made up 3 percent of the almost 19,000 complaints filed against nursing assistants over the past decade.
Thurura's license was revoked in August.
Where the system failed Jamie was in not putting safety measures in place after the 2006 episode, Burgess said. "Lying with her legs spread on the bed was a red flag," Burgess said. "They are covering themselves by saying they couldn't prove anything."
Officials should have assessed whether using male caregivers was a "reasonable" risk, said Sobsey, a University of Alberta professor. "I really don't think you can say, well, we really just hoped for the best," he said.
Surveillance cameras can deter impulsive abusers, he said. "It might be better to sacrifice a little privacy to protect them," Sobsey said.
The state Attorney General's Office is proposing stiffer penalties for those convicted of abusing vulnerable adults and wants to set up a public database of perpetrators, measures that will go before legislators next year.
Bessie often finds herself in a "cold rage" at what Jamie has endured. She launched a lawsuit against Integrated Living on behalf of her daughter and settled out of court last month for a confidential amount.
But money can't erase the pain. "We have to find a better way to protect people," Bessie said. "The public needs to know what's going on."
P-I reporter Ruth Teichroeb can be reached at 206-448-8175 or email@example.com.
Also, here and in Australia, folks say "people with disability" rather than "people with disabilities."
I was surprised at how many folks in the staff gathering were what we in the US would term "hard of hearing"or in NZ "have a hearing impairment." I think there were at least five. At least one knew a little NZSL.
Another thing to keep in mind for the Aussie and NZ experience: tea is BIG. Break times in the morning and afternoon during events are set aside for tea.
Anyway, then we all had lunch and I met Viv Maidaborn, the CEO for the organization. In addition, I met some of Barbel's coworkers and others while standing around with my lunch. I decided that I would take an hour to look around the Te Papa because I was really curious about the Maori experience---there were lots of Maori people at the conference.
Anyway the Te Papa's Maori holdings on display are AAAAAAAAAAAAAAAAMAZING. Just completely stunning. I think the Native American Museum in Washington is sort of the Te Papa equivalent. Just a beautiful building with fantastic displays, including entire Maori buildings that have been taken apart and reassembled and put inside the Te Papa. Maori design and craft skills are, again, AAAAAAAAAAAAAAAMAZING! Maori culture and history are incredibly strong here and have a real presence. I talked to some Maori who are aware of the issues confronting Native Americans...I believe I heard that Maori representatives have been called upon to talk to indigenous peoples in the US about culture preservation and representation. Anyhow, I know I am just dipping my toe into the Maori waters so to speak, but I found what I was seeing and hearing hugely interesting.
After tripping around the Te Papa, all attendees assemed for the Annual General Meeting of CCS Disability Action, which included awards, budget presentations, speeches, and me. So I talked for ten minutes about direct action in the US, especially the fight to close Howe and how ADAPT came to town to help pressure the Illinois state government. Direct action is not really used in a US sense here in NZ, plus CCS Disability Action is just starting to work on the focus on action, so it was interesting to get people's reactions. A Maori man named Hayden Harry said that the Howe example affected him because in Maori culture people take care of their own---they do not send them away. So he was happy that we were able to help close Howe.
Next, we had a Maori style welcoming ceremony. This sort of ceremony is led by senior Maori men, and people sit on two sides of a room facing each other, with certain rules about who faces who. The ceremony was in both Maori and English, and I had a Samoan interpreter who knew some ASL helping me. People from each side spoke one at a time, and after speeches, a song was sung by supporters in Maori. So any time anyone said something good, they sang. There were also prayers and remembrances of those who have passed away and those who are far away, in order to connect the human web. After the preliminaries, people greeted each other by bumping noses. Then, we arranged ourselves into a circle and different people spoke about the work they are doing, sort of reporting on how things are going. Again, after each speech, a song was sung. Then there was a final uniting song that was in both English and Maori, and I was able to sign along with that one.
Then we had "drinks and nibbles," aka, drinks and appetizers. I socialized with different folks and then a group of us went out for Thai food, and then those who were still in the game went to a pub next to the NZ Stock Exchange---which is right by the Te Papa. All in all an excellent day! AAAAAAAAAAAAMAZING!
Wednesday, November 12, 2008
Tuesday, November 11, 2008
YES! YES, I WOULD!!!
So I set up my travel plans in order to include this retreat, which was held at O’Carrollyn’s, a fully accessible resort in the town of Port Stephens, which has this really incredibly beautiful beach that reminds me a little of the Pacific coast of Baja (Punta Cabras especially), only with a eucalyptus forest edging it. Every cabin at O’Carrollyn’s is accessible with a roll in shower. Yes, it is crip heaven with koalas. One of the staff manages trips to the beach with an accessible beach chair and lift.
About twenty women attended from all over the state of NSW and Sharon, Barbel Winter and some of Sharon’s co-workers coordinated it. My job was mainly to provide input on and observe the process of the curriculum, although I did help with some exercises and took a lot of the group photos. The group was incredibly disability diverse---we had women who used wheelchairs and walkers, a whole crowd of blind/visually impaired women, a deaf-blind woman, women with hidden disabilities, women with cognitive or intellectual disabilities, the works. I ended up relying on lipreading generally and of course was completely wiped out by the end of the retreat.
For many women, it was their first time connecting with other women with disabilities, while others were longtime activists in the network. I felt very lucky to be part of this gathering---there were lessons to learn from each person present.
We did have a group agreement to protect people’s privacy and so in order to report on the retreat without violating that trust, what I am going to do is essentially comment on overall structure, and then focus on lessons learned over those three days.
Fundamentally, the goal of the retreat was to get the women to take risks by examining how they work with others in a group setting. Women were given different tasks to do as a team, and then were asked to focus not so much on the outcome of the work, but on the process of that work, to better understand why and how one develops as a leader for women’s disability rights. The retreat process proved to be extremely challenging for some group members, while others felt more comfortable studying their own feelings and ways of working with others. Some women’s disabilities required more facilitation so they could participate in the retreat, and we learned how to do that over the course of the retreat.
So, here are some lessons learned/things I thought/points of interest:
...Leadership from behind/leadership in front. What does it really mean to be the sort of leader everyone notices? What do people do when they see a leader out front? Do they see this person as a model, someone to look up to, or do they try to cut the person down to size? What do people see when they see a leader who works behind the scenes and perhaps does tasks like mentor others, guide people to be empowered? Is there a balance between leading out front and leading from behind the scenes?
...Public vs. private motivations. In private conversation, what do we tell other people we really want? Are we willing to act on those statements in front of a large group? Will fear about what the group will think of you hold you back? And, who is all talk and no action?
...The age gap. Negotiating this is one of the key issues for a women's disability rights movement. Are younger and older women able to relate to each other? Can they work in ways that give people at all places on the age spectrum power? Is there real recognition that those with differing life experiences have different skills to contribute?
...Leadership and creativity. Do people with unusual motivation and drive have the social room to flourish creatively? Are they able to take risks, succeed AND fail? Are they subjected to negative or positive criticism? Are they encouraged or aware of how to work in a balanced way with all kinds of people?
....Finding roles for all. How can a group effort make the most of each individual's strength? Frankly this is a very common issue in the disability movement simply because people's abilities vary so widely. Are we able to recognize ability in others? Are we willing to volunteer what our abilities and interests are? When is facilitation necessary, or needing someone else to help us say what we find hard to say ourselves?
...Group process vs. top-down decision making. This retreat examined how we work together as a group. Top-down decision making is so common we didn't really need to try it so much. Working through a group process that is inclusive of all people is incredibly difficult especially given personalities, time constraints and disabilities. But in the end, recognizing the shared effort among the group leads to positive feelings for all.
...Cultural diversity. This group tended to be less culturally diverse than I perceived Sydney in particular to be, but women did come from all over the state of NSW. I don't think we really addressed multiculturalism, or lgtbq issues since the focus was on working across boundaries in a group. Perhaps overtly addressing these areas would have led to some healthy acknowledgement of issues.
...Fear. As those who know me can probably guess, I found this topic of great interest because it is interesting to see what people will do when put into public situations involving fear of different kinds. No, we did not shut people away in dungeons, but instead focused on social situations when the pressure is on, such as when doing public speaking or being bullied by a force more powerful than you. It seems, in general, that some people are fairly confident in situations involving social fear, while others are much less confident, and this seems to depend on experience. Most women took a while to get past the fear to be able to think creatively on their feet. The question I would ask is, how often do women with disabilities take the risk to be put in situations of social fear? And also, it seems to me that a key component of getting past fear is being able to ask questions, not as a stalling tactics, but in order to see clearly what is happening and to resist forces of oppression.
...Creating positive feeling. How do we applaud and recognize one another's efforts? How can we ask constructive questions inquiring why someone did something, rather than negative unconstructive feedback which serves no one but the criticizer? How can we avoid gossip? How do we have FUN????
I would very much like to thank Barbel and Sharon for their hard work and for allowing me to tag along, and also all the women at the retreat, who worked hard and thought hard and allowed me to learn from them. I hope that this was the start of something constructive in NSW and a boost to the women with disabilities network! Best of luck to everyone as they make their way in the world, and thanks for the Vegemite...!!
Sunday, November 9, 2008
First, the US elections were getting under way (Sydney is 16 hours ahead) and so I spent twenty minutes scanning for news. Result: blahhh, people were about to start voting.
So I busted out of Sharon’s house and after some to-do buying a ticket (wasn’t pressing the right buttons), got on a train down to the Circular Quay, which is a U-shaped pier area on the water which functions as Sydney Tourist Central. All the buses and the ferries and the cruise ships and the trains stop here, and so there are people milling around wearing Western dress and Buddhist robes and saris and almost nothing, if you’re one of the Aboriginal people playing your didjeridoo for dollars from the tourists (I noticed one had a CD for sale).
Oddly enough, for reading on the train I’d borrowed a book from Sharon’s library called Cave in the Snow, which is the story of a Buddhist nun named Tenzin Palmo, who happens to be a British-born woman and one of the most senior Buddhist nuns living. She lived in a cave by herself for 12 years on a spiritual quest for inner perfection (which is one way to phrase a very complicated journey). Obviously, it was a bit disorienting to be totally mentally engaged with this book while in the hubbub of tourism in a major city.
Once at the Quay, I went right up to the water and took a look. Sydney Water Report: light greenish blue. Very pretty. Swimmable looking. The Quay itself is one of the last convict-made projects from Sydney’s days as a penal outpost. Lots of the convicts had valuable skills (or learned them under duress!), such as masonry.
I wound my way along the pier up to the Rocks, which is the name for the cluster of original Western settlement at Sydney Harbour built on (duh!) the rocks---the birthplace of colonized Australia. Sydney, I should say right here, is built on land which rightfully belongs to the Cadigal, an Aboriginal tribe (and I would like to reiterate for readers that progressive public gatherings in Australia always start with a thanking of the traditional owners of Australia, preferably done by Aboriginal people themselves I think).
Original buildings at the Rocks include the Sailor’s Home, shops, and Cadman’s Cottage, where the harbormaster stayed and kept his office. Today many of these buildings house very nice shops and boutiques which cater to the tourist with a few more bucks. In the midst of the Rocks is one of the pilings for the Harbour Bridge, and you can walk out across the Bridge and take pictures (for a fee). I took pictures of the Bridge but decided to save my legs for the Opera House and Gardens.
I retraced my steps back towards the Opera House, on the other side of the U of the Quay, and while I was in the end I heard my first didjeridoo. VERY COOL. Deep, which is in a range I can hear with my aids. (Forget flutes and piccolos!) There is also a Writer’s Walk leading over to the Opera House, with round brass plaques commemorating famous authors and quotes.
Just a short walk on is the Opera House, which is pretty much the first thing anyone around the world thinks of when they think of Sydney. It really is pretty darn cool, its shapes being wedges taken out of a globe (pie-ball slices?). It's also undergoing an access renovation! I found a sign out front with a quote from the Opera House architect talking about how the building should be accessible for all.
Right next to the Opera House are the grounds for the Royal Botanic Gardens, right on the waterfront. HUGE fig trees. Views of the harbor. Invitations to "walk on the grass!" Palm and fern and succulent conservatories. Yay! And....BATS!!! Yes, there are flying foxes/bats that roost in trees in the Gardens, and I took pictures of them hanging from the boughs in the daytime. I think when they fly they are maybe 2 feet across. They are big enough that even I---and I am only a sort of average wildlife spotter---found them really, really easily. Anyhow I really liked the Gardens and remember, it is spring here so lots of plants are in bloom (and I am totally depending on my allergy pills).
After lunch, I headed over to the State Library, which is undergoing some renovations but has a very nice display on wisdom as collected from various (famous) people all over the world, such as Nelson Mandela and Nick Nolte (?!?).
OK, slice of Australian life---as I sit on Sharon's couch typing this up, the Australia vs. Papua New Guinea rugby match is starting with masked dancers.
The State Library was ok, but then I hit the New South Wales Parliament (small, legislative-ish), passed by the Historic Houses Trust (this is all on the same avenue, Macquarie Street), and then visited the Hyde Park Barracks. This is where the government used to park the convicts way back in the day, and they have reconstructions of rooms where the convicts used to live and sleep. After gross (and I mean, really gross) abuses of authority were exposed, the barracks were abandoned as a jail but then later used for various purposes, such as housing female Irish orphans who came over during the potato famine and also as an "aged and infirm home." Today the barracks area reminder of social history---oh, and they also have a cool exhibit on the prison ships whereby many convicts came to Australia. Depressing as hell, but interesting.
At this point, I'd come to the end of my plan, so I decided to wander around and find something to eat. I ended up in the very upscale shopping district, but the good part about that is I stopped in a pub and found out on the tv that OBAMA IS THE NEXT PRESIDENT OF THE UNITED STATES!
I felt so relieved.
Very relieved. A world without Bush!
Then I went and got lost on the Sydney trains, ate too much fried calamari for dinner, and went home. Oh, I shopped. Mom and Dad, guess what I'm bringing home?
As a heads up, I've spent the last three and a half days at a place called Port Stephens on Australia's North Coast at the New South Wales women's disability leadership retreat. No internet access, so I am scrambling to catch up while making an effort not to overwhelm those who subscribe to this blog via e-mail. It will take a day or two to get caught up. In the meantime, I want to say that I do miss my family, friends and colleagues back in the US and I am looking forward to coming back! Many thanks to those who have emailed with messages of support because it is good to hear from you.
OK back to more tippety typing...stay tuned!
Sharon dropped me off at the Deaf Society first, but unfortunately the Deaf woman I had stopped by to see, Kat Lancaster, was not in the office (and it turns out we had a missed e-mail situation). I left my information for Kat to catch up with me later at MDAA.
So then I headed over to MDAA, which is housed in two former homes (reminding me a bit of the Korean Sexual Violence Relief Center, which is also in an old house). MDAA is a group of folks who focus both on individual advocacy and also on research, and they have put out several excellent resources on disability and cultural competence. Australia in general, and the big cities in particular, are major hubs for non-English speaking immigrant communities. At MDAA, the staff speak about fifteen different languages, according to Malinka, who is the chair of the MDAA Commitee (like a board of directors). At this point in time, one of the Committee’s jobs is to get the aims and work of MDAA communicated to people with disabilities in plain language.
At this point in time, MDAA is undergoing some administrative changes, having been formerly directed by Barbel Winter and now under the direction of Diana Qian (Barbel is now in New Zealand working with CCS Disability Action). Despite the changes, I think MDAA is at its core an organization that would be radical in the US, given its commitment to serving anyone regardless of their cultural background and the true inclusion of employees who represent many cultures. This organization is WAY beyond tokenism, thank goodness.
MDAA is also significant because Australia has very harsh immigration rules which focus on one’s ability to do work. If you do not have any job skills or if you have a disability, Australia will reject your application for citizenship. I think this may have to do with a historical focus on skills as a requirement for citizenship, originating in the days when Australia served as a penal colony for England and later when waves of immigrants came in due to, for example, the Irish potato famine. In reality, the effect of the immgration laws can be extremely punitive.
Anyhow the folks at MDAA are doing culturally significant work and are really friendly to boot. Funnily enough, the day I visited was also the day of the Melbourne Cup, which is an Australian national event. The Cup is a horse race, which means the entire actual race happens in three minutes. But Australians across the nation are busy all day with laying bets, drinking and eating. In fact, there’s an entire week of festivities built around the running of the Melbourne Cup (especially in Melbourne). Needless to say, at MDAA the Melbourne Cup is sort of irrelevant as an outdated British activity, but since I, as a visiting American, had no idea what the whole Cup thing was, MDAA decided to put on a show.
First, in the morning staff collected bets---we ended up with $50 for first prize, $35 for second and $20 or $25 for third. Then, everyone put on hats and had a lunch together. Next, we drew the names of horses one by one---my horse ended up being Guyno (funny for a feminist, huh?). Then, we ate and whiled away the time until the running of the Cup at three, which we watched through fuzzy reception on the office tv...and Malinka swept the prizes, having drawn the names of the first, second AND third place horses!
And that was the Melbourne Cup. Presumably, everyone in Melbourne went out and got drunk after that (a good number of Sydneysiders as well). But at MDAA, everyone went back to work! Many thanks to MDAA for showing me how the Aussies do it! Sharon and I worked out a detail about some meetings for next week, and then Kat came to pick me up so I could visit the Deaf Society.
As it turns out, the Deaf Society provides services such as community information and education, interpretation and independent living skills. In that way, it functions like Anixter Center in Chicago, to give some context, which is an entirely different thing than the state and National Associations of the Deaf. Kat herself handles a lot of information referral, from what I understand. She took me around to visit her coworkers and served as my Auslan interpreter (she knows some ASL through a former roommate). Half the office was about to go to Perth the next day for a training conference and Kat was to give a workshop at the conference as well (Perth is on the western coast of Australia---takes between four and five hours to fly there).
Kat and I also went for coffee (well really, chocolate at Max Brenner’s), and it turns out she knows Kyle Miers through having represented Australia with him at international Deaf events. Kat’s parents are Deaf and she has been involved with the Deaf Society in different ways since she was fifteen. She also attended the youth camp of the last World Congress of the Deaf, outside Madrid. As a person, she is very strong willed and creative in seeking out ways to make change. As a youth leadership coordinator, it’s exciting for me to meet young women who make an immediate first impression of strength, and Kat is one of those people. I wish her much luck and success and I hope the Australian Deaf community continues to nurture younger leaders such as Kat through support for leadership development and opportunities to represent Australia internationally. Thank you Kat for having chocolate with me!
After Kat showed me to the train station, I managed my way back to Sharon’s house, where Barbel Winter had also just arrived from New Zealand. Barbel, Sharon, and I were scheduled to leave in just a couple of days for the coast area north of Sydney for a women with disabilities leadership retreat (held through the women with disabilities network of New South Wales and the first of its kind!). Sharon and Barbel were to co-facilitate and I would help with a few exercises, as well as just talk with women who were attending. So after Sharon did tai chi and Barbel and I ate dinner, we went through the planned agenda to bring me up to speed and help them fine tune their plans. This was really exciting because about 20 women would attend with different disabilities from all over New South Wales, all ages, all skill levels. What’s not to love about trying a new effort?
The next day, I was to go be a tourist about Sydney, and on Thursday, it was off to the retreat!
My host in Sydney is Sharon Smith of the Multicultural Disability Advocacy Association (MDAA) of New South Wales, who picked me up wearing a bright pink wig. Yep. Just to be sure I didn’t miss her! I found Sharon through Carolyn Frohmader, the executive director for Women with Disabilities Australia (WWDA). (Thanks Carolyn!!!! By the way Carolyn is based in Tasmania if anyone happens to be going there.)
Anyway after a quick swing through Sydney to orientate me (Circular Quay, Newtown, George Street, etc and not necessarily in that order), and after a quick meal of spaghetti at her house, Sharon took me along to her Auslan class at St. George TAFE.
A TAFE is sort of like continuing education or maybe community college in the US. Sharon is pretty cool in that she’s a busy person who’s also a learner of new things (she does other classes too). This class was overseen by an Australian Deaf man named Brett, who was very nice about allowing me to observe his 15 or so students in action. Back when I first started learning American Sign Language, I took classes a lot like this one, so I was interested to see how it would go.
As it turns out, it’s pretty much the same as an ASL Level One, the topic of the day being fruits and vegetables (and for me, Auslan fingerspelling---look Ma, TWO hands!!). The teacher’s tone essentially sets the tone for the class, and Brett from what I can tell has his teaching methods down. He has a mix of great students and ok ones, and also his share of the class clowns (hello to David and Ken!) if your average class clowns are gay bear cut-ups who bring fans to class (yes, fans, and in Ken’s case his had a photo of gay lovers printed on it).
Anyhow Brett and I had fun exchanging signs and he had me sign for a few minutes to his class about what I do---but the signing for what I do is a bit past Level One, though I appreciate the effort to hang in there! The students were pretty open about letting me hang around with them and luckily Sharon is not shy about using her fingerspelling to help me understand words when I can’t lipread them (sometimes it’s the Aussie accent, sometimes there are just words that are used in Australia that I don’t know).
One important thing Brett mentioned was that in Australia, videophone is still very new and to communicate people still use TTY or relay on IP relay. I find this pretty interesting because somehow I expected Australia to be as wired as South Korea, but nope, not the case. South Korea is more wired than the US, but they lack an interpreter relay service like the ones we have for videophone.
A word about being in Australia without an ASL interpreter: YES, it is hard work to lipread people. I ask for a lot of repeats but quite often do get the gist of things and it gets a little easier each day. But it is hard work. People are generally pretty nice about it here and I find that the Aussies I have talked with are not shy about chatting, for the most part.
At the end of the class, Sharon and I gave her classmate a ride home, and of course as we drive along which bears pull up beside us and wave their big teddy bear stuffed animal at us? Yes, David and Ken....for kilometers up and down the winding Sydney road...so the last time I arrived in an Australian city I got kicked, and this time I got BEARED.