PWD, SPRC and Fe Fes in Sydney

Tuesday, November 11 was a busy day. In the morning, I visited with People with Disability (PWD); in the afternoon, with the Social Policy Research Center (SPRC) at the University of New South Wales; and in the evening Sharon hosted a "meet and mingle" at her house for women with disabilities to gather and watch the entire series of the Fe Fe movies!

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!