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Deaf Blind Victoria (DBV)
What is Self-Advocacy?
At its core Self-Advocacy is a human rights movement. The movement began in Sweden in the 1960’s, when a group of parents whose adult children with intellectual disability were living in institutions decided their children had the right to decide how they spent their leisure time. Resident groups made up of people with intellectual and other cognitive disabilities formed. The movement grew and spread across the globe and by 1980 it had arrived in Australia. The Self-Advocacy movement has been instrumental in calling for the closure of Australia’s institutionalised system of disability accommodation, care and support from the 1980’s until the present day.
Self-Advocacy is twofold, it is both collective and individual.
Collective
Self-Advocacy groups are run by people with disability for people with disability; people join together to have their voices heard, support each other and advance disability rights and interests. Self-Advocacy groups are often asked to share their expertise to inform changes to disability or community service provision and support policy reform. The collective approach, where a group of people come together to speak about their shared lived experiences, has the benefit of amplifying the voices of people with disability to help ensure they are heard, and provides support to individuals as they share their stories of abuse and discrimination. Through group Self-Advocacy people also develop their identity to include ‘Self Advocate’ as a valued and meaningful role that is equal to the role of ‘Disability Advocate’. Collective Self-Advocacy works at the systemic level and its impact is greater than the word ‘self’ implies.
Individual
An individual can advocate for themselves to have their needs met and their rights upheld. This is a vital part of Self-Advocacy. As people learn about rights, develop a greater understanding of their needs, including their own disability access needs, and develop the skills and confidence to speak up they become less vulnerable to abuse, neglect and exploitation. The learning, skill development and confidence needed to successfully self advocate builds over time and is most successful when developed with peers in a safe place without power imbalances, i.e. a Self-Advocacy group.
The benefits of Self-Advocacy
A recent literature review into collective Self-Advocacy for people with intellectual disability found extensive benefits to belonging to a Self-Advocacy group. Benefits to members included increased social capital, practical and emotional support, increased employment
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opportunities, opportunities to sit on boards, reference groups and advisory committees, opportunities to work alongside other organisations on campaigns and disability rights activities, support to make changes in their own lives, access to resource and information and helping people to cope during difficult points in their life (Tilley, et al. 2020).
Self-Advocacy groups give members the opportunity to talk about and understand the exclusion, abuse and trauma they experience; to be listened to and empowered to take actions to have their rights upheld and speak up to protect their safety. Groups provide support to members as others in the group are there for them and understand their experiences. Self-Advocacy groups are not facilitated or owned by service providers or carers, making them safe places for people to share their lived experiences and make plans to protect their rights.
Self-Advocacy groups are often intersectional. Groups like Rainbow Rights for people with intellectual disability who identify as LGBTIQA+, Power in Culture and Ethnicity for people with disability from culturally diverse backgrounds, Positive Powerful Parents, a group for parents with intellectual disability who have had contact with the child protection system and Voices for Change, a group for people with ABI who have been to prison all serve a unique purpose giving voice to the most marginalised people in our community.
The work of Self-Advocacy groups benefits the entire community by countering all types of discrimination, within systems and the community at large. Self-Advocacy groups know what discrimination people with disability are facing as groups are member driven. Governments rely of Self-Advocacy groups providing expedient, practical and cost-effective expert knowledge to inform service delivery and systems change. Groups follow and share best practice methods of inclusion, accessible information sharing and supportive decision making. Groups also develop and share bespoke resources that are responsive, relevant and meaningful to people with cognitive disabilities, and disseminate modified and accessible versions of material that would otherwise be inaccessible.
Recently, systemic discrimination has been noted by all Self-Advocacy groups in Victoria as continuing to be a major barrier to people with disabilities, preventing them to access the whole community and being valued and safe within it. Self-Advocacy groups are a safeguard for people with intellectual disabilities, ABI and complex communication support needs. These people are vulnerable to neglect, abuse, violence and the entire spectrum of discrimination, if they are without support and a strong connection to their community. Self-Advocacy groups bolster and uphold human rights for people with a disability while assisting to target changes needed to make the community a better place for everyone.
The intention of this submission is to shine a spotlight on the value of Self-Advocacy, to tell you, the Disability Royal Commission that Self-Advocacy can provide so much to people who are vulnerable such as connection, community and empowerment. Things which the future Australia, an Australia for people with a disability that is free from the barriers that able
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bodied mainstream society unconsciously and consciously place in front of people with a disability.
About Deafblind Victoria
Deafblind Victoria (DBV) is a self-advocacy group run by and for Deafblind people in Victoria, Australia.
The main activities of DBV are:
- Deafblind social events and peer support
- Deafblind awareness workshops
- Producing and sharing information and resources
- Advising and consulting about deafblindness To learn about the people running DBV, click here.
For the latest news from DBV, click here.
DBV’s office is located on the floor three at Ross House, 247 Flinders Lane. Melbourne.
DBV can be contact by mail or email. or on our Facebook page.
“Being “Deafblind” as a disability is not the problem. But, it is the lack of accessibility and awareness that society holds“.
Aims and objectives DBV aims to enable Deafblind Victorians to better lead, speak up for ourselves, and exercise our rights.
This is achieved through:
- advancing the health and well being of Deafblind Victorians,
- promoting and protecting our human rights,
- strengthening our Deafblind community, language and culture,
- and raising awareness in the wider community. Our mission Our mission is to reduce isolation and improve the quality of life for Deafblind people in Victoria. Our tools include advocacy and peer support.
One of the main barriers faced by Deafblind people is the lack of access to Auslan interpreters and communication guides. We need these services to communicate with the wider community and lead full and productive lives.
“Aus/an Interpreters are our ears and Communication Guides are our eyes. These two services working together gives us better access into the wider community”.
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On the DBV website, you will find events and resources that help the wider community communicate better with Deafblind people and understand Deafblind culture.
Deaf Blind Victoria is a leading self advocacy group in Melbourne, Victoria that provides truly disability led work for people with a disability. Without DBV the deafblind community in Melbourne would be so much less.
Accompanying this is a series of videos from some people at DBV giving a first hand account of their experiences.