Public lecture: “Lives worth living”: Social memory, social action, and contemporary disability advocacy

The designation of ‘life unworthy of life’ was used to justify the deaths and persecution of hundreds of thousands of people with disability under National Socialism. The Nazi Government was not alone in endorsing these values, with many other nations, including Australia, also sanctioning a variety of eugenic practices, and the segregation of people with disability from the community a dominant feature of government policy.The disability movement has made significant progress in transforming social values and attitudes since this dark period of history. However, marginalisation of people with disability continues and there are ongoing campaigns for equal rights and recognition within the Australian disability sector.

This event, hosted by the Sydney Jewish Museum and Sydney Health Ethics (USYD), moves from memorial and remembrance to a focus on social action. Academic and community speakers will address the question of how we can all work towards ensuring ‘a life worth living’ for every member of society, discussing the importance of human rights-informed policy and legislation, the importance of advocacy, and the importance of embracing diversity at the community level.

• Ms Nastasia Campanella, journalist and broadcaster, ABC Triple J
• Dr Laura Davy (Chair)
• Professor Rosemary Kayess, Director, Disability Innovation Institute, UNSW Sydney
• Ms Ayah Wehbe

Thursday 22nd March, 6.00pm
Sydney Jewish Museum, 148 Darlinghurst Road, Darlinghurst

Register for this free event here.

Parents reach settlement with IVF clinic after sons were born with genetic condition Fragile X syndrome

SMH,13 November 2017
Source: AAP
“The parents of two boys with an intellectual disability say they can move on with their lives after reaching a settlement with a Sydney IVF clinic. Leighee Eastbury sued Australian IVF provider Genea, formerly known as Sydney IVF, after failing identify she was a carrier of the Fragile X syndrome.”
Find article here.

Increase in abuse and neglect in mental health and disability facilities

SMH, 19 October 2017
Author: Miki Perkins
“In one home for people with disabilities, toilet paper was rationed. In another, a resident was left in the garden for two hours on a roasting hot day. He had to be taken to hospital for exposure and sunburn. These are just two examples among hundreds of incidents of abuse, neglect and violence reported by community visitors – volunteer advocates who visit the state’s mental health and disability facilities to check on the welfare of residents.”
Find article here.

Peng v NSW Health Pathology [2017] NSWCATAD 288

Decision date: 28 September 2017
“HUMAN RIGHTS – disability discrimination in employment – where President of the Anti-Discrimination Board has declined a complaint of disability discrimination in employment as lacking in substance – where employer relies on unjustifiable hardship exception – whether it is fair and just for leave to be given for complaint to proceed.”
Find decision here.

The Role of Courts in Shaping Health Equity

Journal of Health Politics, Policy and Law 2017, 42(5): 749-770
Author: Mark A Hall
“Over the past fifty years, courts have played a limited, yet key, role in shaping health equity in the United States in three areas of law: racial discrimination, disability discrimination, and constitutional rights. In this article, I examine in various ways the roads courts have taken, the roads not taken, and possible future paths.”
Find article here.

Cerebral palsy sufferer Jessica King’s landmark win over NDIS

SMH, 18 June 2017
Author: Miki Perkins
“On May 4 the state’s Administrative Appeals Tribunal ruled the physio and gym membership should be funded through the scheme.The tribunal’s decision is the first to follow the successful appeal of Moriac resident Liam McGarrigle in the Federal Court in December 2016, also with Victoria Legal Aid assistance.”
Find article here.

Assisted Dying & Disability

Bioethics. 2017, doi:10.1111/bioe.12353
Author: Riddle, C. A.
“This article explores at least two dominant critiques of assisted dying from a disability rights perspective. In spite of these critiques, I conclude that assisted dying ought to be permissible. I arrive at the conclusion that if we respect and value people with disabilities, we ought to permit assisted dying.”
Find article here.

Prisoners are excluded from the NDIS – here’s why it matters

The Conversation, 14 March 2017
Author: Jesse Young, Stuart Kinner
“The National Disability Insurance Scheme (NDIS) is designed to provide access to personalised supports and services for all Australians with a disability. However, the NDIS specifically excludes prisoners.”
Find article here.


South African officials were “negligent and reckless” in transfer of vulnerable patients to cut costs

BMJ 2017; 356: j632
Author: Pat Sidley
“At least 94 patients with mental illnesses and disabilities died in appalling circumstances after a contract between a private mental hospital and the Gauteng provincial government was cancelled last year.”
Find article here.