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From self-advocacy to societal effects

In this video, presenters who work in the area of disability share their ideas and examples of advocating for themselves and others.
MAN: FutureLearn. [THEME MUSIC] UNSW Australia. Advocacy across the life course.
ZOE PARTINGTON-SOLLINGER: As a disabled person now as an adult, I think incredibly differently to how I did as a child with a disability. As a young disabled person, you’re told things by professionals around you about your impairment, about what you can do and what you can’t do and what affects your life. And quite early on, I was told that I couldn’t have children. And I think that was quite– I suppose as a young person, you don’t always think you want to have children, but it was always there in the back of my mind that I’d been told that.
And I’m not sure whether I went on to have three children just because I knew I’d been told that at some point in my life. And I managed to have a really interesting obstetrician, a really interesting diabetologist. And my diabetologist was very radical in his thinking. And he didn’t see why– you know, he said I was a perfectly healthy person in many other respects. He could manage the chronic condition side, and I could have children. But interestingly enough, the obstetrician– I remember him saying after my first child, “Now Zoe, we’re not going to have any more children, are we?” And I remember the diabetologist saying “Zoe can have as many as she likes.”
And that was a really interesting moment for me to have that backup, I think. And so now, my daughter has the same impairment, and I’m very laid back about how I talk to her about the idea of how you manage your disability and how you manage relationships with other people and how you manage careers and working life and education, actually. So I am a bit of a stickler. I think the schools and the places where my children go to school probably think I’m a nightmare, because I’m very much about, there needs to be equality in education for her. She needs to have access to everything like everyone else does.
And if that means they need to put access provision in, I will make it happen. So I’ve become much more vocal, I think, in that sense. I think for my parents’ generation when I was at school, they just sort of didn’t have any expectations of me being successful within my grades and within the education that I was doing, because they just wanted me to be happy and to be able to manage my impairment. So it was very different, I think, when I was at school, sort of in the ’70s and ’80s. But now there’s a better infrastructure in place for disabled people in schools and in the education system.
And people should use it, because that law exists, particularly in the UK, to make sure that you have equal access.
DENISE BECKWITH: There is always going to be a pool of people with disability who can’t advocate for themselves, because of the nature of their disability and because of how inaccessible the service system is, or social services are. I worked with a woman with cerebral palsy, epilepsy. Had major seizures, and was nonverbal. And she was experiencing issues where she lived. She was living with her family. And she didn’t want to be living with her family anymore because of the experiences she was having in the family environment. The stress of the environment in which she was living was exacerbating her seizures.
And the stress in which she found herself because she was at respite, blocking a respite bed at the time of the conversation that I was having with her, so she felt like a burden on that system too. So the stress of that and the fact that she was nonverbal, and she realised that people place such value on verbal communication that she needed advocacy support to help her put her argument forward. Because the government, who would have been ultimately responsible for the cost of her service provision was saying, “But she has a house to live in, because she has family.”
I had to put the case forward that it’s normal for people with disability who are 20 to want to move out if they so choose to. So the service system and the government have to respond to that need. So that’s the argument that I put forward. And ultimately, she got given the accommodation and the supports that she needed. But she acknowledged that, because of her disability, she couldn’t have done that on her own. It took a year and a half. She ended up blocking a respite bed for a year and a half. And the service weren’t happy, but I just went, “Sorry, she can’t go home.”

In the video above, Zoe Partington-Sollinger and Denise Beckwith give some examples of self-advocacy and individual advocacy.

Zoe explains how certain experiences in her life drove her to become a stronger advocate for herself and her children. She gives a good example of direct self-advocacy: taking control of, and where necessary, challenging, the disabling assumptions in medical care.

Denise explains why some people with disabilities will need others to advocate on their behalf, and she tells the story of a young woman who needed her help to improve a difficult living situation.

Zoe and Denise illuminate how one’s advocacy needs and skills may change over the course of their lives, and their examples illustrate how important advocacy can be during major life transitions — such as moving out of the house for the first time, giving birth to a child, or entering the mainstream education system.

Zoe also describes how having the backing of her diabetologist helped her to advocate for herself within the medical system. In Step 5.11, Zoe discussed the power of Disability and Deaf Arts as a way of building strength within the disability community, and she described a situation where a Julie McNamara song — inspired by the singer’s experiences in the mental health system — prompted Zoe to advocate for herself in her own medical situation.

Whilst many disabled people advocate for themselves a daily basis, they also often act together to share discriminatory experiences of, and ways of challenging, existing practices.

For example, the self-help and advocacy movement around mental health services developed in the 1970s, when former psychiatric patients came together to organise patients’ rights against forced treatment, stigma and discrimination; and often to promote peer-run services as an alternative to the traditional mental health system. There are many grassroots self-help groups of consumers/survivors, local and national, all over the world.

Talking points

  • In what ways do our advocacy needs and skills change over the course of our lives?
  • Why might there be particular advocacy needs during major life transitions?
  • How can self-advocates support one another?

In the next steps, we look at some examples of advocacy at the grassroots and community levels.

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Disability and a Good Life: Working with Disability

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