Mean As! project challenges us to live and let love

Seven disabled New Zealanders tell their stories of relationships and sexuality in new research by the Donald Beasley Institute in Dunedin.

These seven stories are the first unfiltered accounts by whaikaha (disabled) Māori and New Zealand men and women with learning disabilities. They challenge listeners to allow disabled people the same rights as other New Zealanders to live and love.

The ‘Mean As!’ research project, funded by the IHC Foundation, is an online library of written and recorded stories created by disabled people working together as storytellers and researchers, and beautifully illustrated by Otago artists.

The library also includes two project reports:

• A report written by four researchers with learning disabilities that describes the project in plain language and presents their ideas as a set of key messages.

• A report by academic members of the research team describing why the project and the way it was co-created is important and takes us beyond what we are used to hearing and doing.

The stories, sometimes presented as letters or poems or pūrākau (legend), uphold the mana and dignity of the storytellers and reflect their individuality.

“A lot has been written about the lives and sexuality of people with a learning disability – but not by us,” the researchers with learning disabilities said in their report. They said there was a little bit of every person with a learning disability in every story.

William Luskie, Vanessa Jane Murphy, Darryl White and Cheryl Wallace listened to stories that were sometimes difficult to hear and brought fresh ideas to a research space dominated by the voices and theorising of academics and other professionals.

“The project has gained a lot of interest and attention from researchers interested in sexuality and/or inclusive research,” says Donald Beasley Institute Director Brigit Mirfin-Veitch. “As a result, the research team are also currently writing a series of papers for peer-reviewed journals and a book chapter to further promote the research and its findings.”

This research project was named the “Mean As!” Project because it was what storyteller Tipa said about his pūrākau after listening to it for the very first time.

The actors who volunteered to record the stories came from the University of Otago School of Performing Arts, Arcade Theatre Company, personal connections and the Otago Actors Agency.

Read more.

Photo caption: Researchers (from left) William Luskie, Vanessa Jane Murphy, Cheryl Wallace and Darryl White.

Advocates see gaps for adults at risk

A merger of two organisations working to protect the interests of adults with intellectual disabilities will provide stronger support for people at risk from abuse, harm and neglect. The merger will also build pressure for a mechanism to safeguard adults between the ages of 18 and 64.

In 2019 the Personal Advocacy Trust (PAT) and the Safeguarding Adults from Abuse (SAFA) collective joined forces to strengthen the advocacy and safeguarding services on offer to adults. The merged organisation is called the Personal Advocacy and Safeguarding Adults Trust (PASAT).

Since January 2019, PASAT has had enquiries or referrals from 50 adults at risk.

Erika Butters, PASAT National Advocacy Director, manages the advocacy side of the organisation, which now includes short-term advocacy and supported decision-making among the services it offers.

Sue Hobbs, Safeguarding Adults National Director, manages the safeguarding response, which now extends beyond Auckland, and has widened to include services alongside advice.

Erika says the new organisation will be able to gather evidence of support needs to take to Government. “The partnership has broadened the scope to do more, to help more. The trustees are not looking for business opportunities, they are recognising the need and responding to need,” she says.

Funding from the IHC Foundation supported the redevelopment of PAT and the subsequent merger of the organisation with SAFA.

This story was published in the IHC magazine Community Moves. Read more.