Dan,
The concept of people's parliaments is interesting-- is the White Paper
available at a specific place to look at as we'd be really interested in
reading it. Would you classify these efforts as "self" advocacy then? They
seem to be more in the social group/collective activism realm, especially
given the social construction type challenges of changing disabling identities
and institutions (or is their message more about not wanting to be affiliated
with disability and trying to distance from that? e.g. more the
"normalization" or social role valorization type fit in message?)
We've had some really interesting discussions back and forth on both of
these-- kind of a paradox-- don't want the negative affiliation with
disability given the long history of negative construction, but as people
become in involved in disability "group" activism-- regardless of the group or
constituency-- they talk about the power and support of that experience as
transforming. Catch 22 for people in nursing homes whether to "embrace"
disability consciousness beyond civil rights or not.
I wonder at times if this is some of this is also a language issue in that in
disability studies we talk the lingo of minority group and outside the field
within the IL activism movement they are talking the lingo of self advocacy
but in essence are using minority group tactics/strategies to get there (e.g.,
people's parliaments, collective activism).
We've had a lot of discussions with center for independent living staff and
activists here about SELF advocacy though too that go beyond language to
practice-- many believe you need to teach self advocacy first and then get at
collective consciousness building later, while a lot of us believe you can
learn self advocacy through group community building and collective activism
and get both at the same time (more of a Freierian of community power building
view than the self empowerment view often found more in individual focused
treatment)
What do you think? I know this also varies with different disability
constituencies, eg.., people with intellectual disabilities in the US voice
different perspectives on this than people in the IL movement.
I'm intrigued with the People's Parliaments-- so are these like national Town
Halls at the policy level or how are they set up and run? Do you think they
carry political power/clout/respect? If so, what led to that/how was that
power base built?
Thanks,
Joy
At 12:22 AM 5/14/2004, Dr Dan Goodley wrote:
Hi Joy
thanks for these observations. In the Britain, we have an interesting case
where
the new White Paper (2001, Valuing People) has implemented 'People's
parliaments' - so that 'people with learning difficulties have a voice'.
The worry is that the existing self-advocacy movement is completely ignored
and,
instead, the emphasis is on professional and service led initiatives like
parliaments. Another crucial issue is to ensure that the work of self-advocacy
groups is drawn into the development of disability studies - many members have
provocative things to say; enact radical forms of activism and challenge
disabling identities and institutions - though disability studies must remain
open to these developments
best wishes
Dan
Quoting hammel <[log in to unmask]>:
> Hi Harriet,
>
> It's great to hear that you have an advocacy support position in
> Australia-- in the U.S., getting out of a NH isn't typically facilitated
> unless there is a strong underground disability activism community
> infiltrating or you live in a systems change state of which there a
> handful. Over the past 3 years, there's been a consortium of players
> (Centers for Independent Living, UIC Disability Studies program) in
> Illinois who have been aggressively working on
> deinstitutionalization/community reintegration. We got a grant to do
> action research and develop the Social Action Group (SAG)-- a program that
> supports people with disabilities who are in NH and want to transition out,
> are in the transition now, or who have recently moved out to the
> community. Based largely on content and needs identified by disabled
> participants, a 6 week intensive program was created, we've just completed
> 10 rounds of the group, and have had over 160 disabled people participating
> in the project overall.
>
> Although SELF advocacy is important and highly emphasized by the CILs who
> help coordinate the actual transition (via a state waiver program), we've
> focused in on collective activism (and the history and strength of the
> disability activism as a movement), social networking, and critical
> consciousness/community building a lot in the SAG program. We use a lot of
> first hand narratives, writings, videos, art, and learning activities from
> within disability studies and disability activism-- some of it is available
> publicly, others we've created. There's a lot of social learning and
> trading of strategies, strengths, and resources that occurs almost
> instantly when people come together and realize they aren't in this alone
> and other people are experiencing the same oppression. Something about
> focusing at the levels of collective action and disability critical
> consciousness building seems to really resonate with people and is really
> transforming, for all of us.
>
> A lot of people in U.S. nursing homes, particularly Medicaid/publicly
> subsidized NH, are experiencing violence, abuse, neglect, mistreatment, and
> basic violations of human rights and dignity-- just teaching them self
> advocacy doesn't seem to be enough and can actually backfire at times in
> terms of punishment for speaking up for rights or resisting in NHs-- there
> are very real consequences here, including being put into a psychiatric
> facility, medication mismanagement, compromised care, etc. Being able to
> form an advocacy network of people and organizations around you, and seeing
> yourself as a part of a bigger activism and community movement, seems to be
> something that participants recommend as mentors to people new to the
> process, and really value in their own lives. So, we tap into that and do a
> lot of programming there.
>
> We see it as kind of like taking Disability Studies as a field of study,
> and packaging it in a way that can be shared with the disability community
> that does not typically get access to this info, in this case to people who
> are living in isolated and oppressive living conditions of nursing
> homes. In addition to the 6 week small group intensive sessions
> facilitated by disabled activists and community members, we've combined
> this with life story narrative writing and, information technology access &
> use training and peer mentoring. Surrounding all of it, we are sponsoring
> public Town Halls where disabled people going through this transition voice
> their issues and experiences and community members and policy makers get to
> hear these and respond-- a way to try to take it to systems level change as
> much as possible. All this coupled with the strong activism by the CILs
> that has been ongoing for decades.
>
> I'd love to talk with you more, and to other people involved in this type
> of systems change, to share materials and ideas. Also, many of the
> participants in SAG are online and have email -- don't know if it's
> possible-- perhaps there's a way to do some participant networking
> internationally?
>
> Harriet, a question to you--is Australia funding the advocacy
> positions? How are these being done or coordinated?
>
> Joy
>
> Joy Hammel, University of Illinois at Chicago,
> Joint Doctoral Program in Disability Studies, Depts. of Occupational
> Therapy & Disability and Human Development,
> 1919 W. Taylor St., Rm 311, Chicago, IL 60612, 312-996-3513; 312-413-0256
> (fax); [log in to unmask]
>
> At 01:40 AM 5/13/2004, you wrote:
> >Dear all
> >
> >
> >I have just started a new position as a community development
> >worker/advocacy support worker for the residents of a nursing home. These
> >residents have a variety of disabilities, primarily physical, and vary in
> >ages from 25-85.
> >
> >
> >Due to various legal, political and personal battles (amongst managers,
> >owners, and funders) these individuals are being relocated to another
> >premises as a temporary arrangement before they will move on to more
> >appropriate alternatives (ie more inclusive and independent living spaces).
> >
> >
> > >From what i understand, my role is to develop their skills of self
> advocacy
> >which includes keeping them informed about their options to enable them to
> >make choices about their lives. I am hoping that one outcome will be in
> >establishing a resident's group which will enable residents to have more of
> >a proactive role in what happens during this difficult time. A major
> >barrier is the impact of institutionalisation and these people neither know
> >nor want anything different.
> >
> >
> >I have a vision for what i would like to see happen yet making it a reality
> >is an ongoing challenge. Therefore I would welcome any advice, comments or
> >suggestions about where to go from here.
> >
> >
> >Many thanks!
> >
> >Harriet Radermacher
> >Melbourne, Australia
> >
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--
Dr Dan Goodley
Reader Applied Disability Studies
Inclusive Education and Equality Research Centre
University of Sheffield
School of Education
388 Glossop Road
Sheffield S10 2JA
Tel: +44 (0)114 222 8125
Fax: +44 (0)114 279 6236
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