Your Story monthly webinar series: COVID-19, disability and me

The COVID-19 pandemic has affected us all.

But people with disability and their supporters are among those who have been hardest hit and they continue to face significant challenges as the Omicron variant spreads through the community.

On Wednesday 2 March, join Your Story Disability Legal Support for an online discussion about COVID-19, disability and the Disability Royal Commission. The lunchtime webinar will feature Your Story Advisory Group member, Dr Kirsten Harley, who is an Honorary Lecturer at the University of Sydney’s Centre for Disability Research and Policy, and a Board Member of MNDNSW.

Kirsten lives with motor neurone disease (MND) and relies on technology to speak and breathe, with a team of trained carers providing round-the-clock care. She shared her story at a public hearing about COVID-19 in August 2020, where she spoke about the threats the pandemic posed to people living with MND.

Kirsten will be joined by Ruth Pilkinton, a senior lawyer who balances leading Legal Aid NSW’s Family Law Early Intervention Unit with caring for two family members with disability – her adult son Daniel, who lives with autism and intellectual disability and is non-verbal, and her husband Paul, who has a rare form of MND called Primary Lateral Sclerosis and uses a powered wheelchair and an iPad to communicate.

Ruth’s personal experience as a carer often informs the decisions she makes as a manager and the advice she provides to clients. She knows that people with disability and carers can make a significant contribution everywhere, including in our workplaces, but to do so effectively, they must be properly supported.

She is a member of the Legal Aid NSW Disability Network. The webinar will be facilitated by Your Story lawyer and Chair of the Legal Aid NSW Disability Network, Rania Saab. Rania also has lived experience, with hearing loss and three young children, two of whom have a disability.

The panellists will share their unique insights and strategies for resilience during the pandemic. This will be followed by a Q&A.

This event will include Auslan and live captions. You can join using Zoom or watch live on our Facebook page.

Visit the Eventbrite page to register for this free online event.

Date and time: Wednesday 2 March from 1-1.30pm AEDT
Location: Online
Cost: Free
Register: Register on Eventbrite

Meet the panellists

Ruth Pilkinton

Ruth is the managing lawyer of the Family Law Early Intervention Unit (EIU) at Legal Aid NSW. The EIU provides advice and assistance to people with family law and care and protection legal issues with a focus on reaching vulnerable people. Ruth is also a carer for two family members with disability – her adult son Daniel, who lives with autism and intellectual disability and is non-verbal, and her husband Paul, who has a rare form of motor neurone disease called Primary Lateral Sclerosis and uses a powered wheelchair and an iPad to communicate.

For 15 years, Ruth led the Child Support Service at Legal Aid NSW and has established a working group to combat forced marriage. For the past three years she has co-chaired the Greater Sydney Family Law Pathways Network. To keep all the balls in the air, Ruth actively works on maintaining her own wellbeing. She enjoys regular bushwalks, lap swimming and sessions with her personal trainer, and is trying to get the hang of meditating.

Dr Kirsten Harley

Kirsten lives on Guringai land in Sydney and is an Honorary Lecturer in the Centre for Disability Research and Policy in the University of Sydney’s Faculty of Medicine and Health, and a Board Member of MNDNSW. In 2013, Kirsten was completing a postdoc and about to embark on an ARC-funded team project on how Australians navigate the healthcare maze when she was diagnosed with motor neurone disease (MND). She has progressively become paralysed and lost the ability to speak and breathe, and uses a NeuroNode to communicate, a ventilator and has a team of carers providing round-the-clock care.

She has become a self-described “passive activist” for MND, including giving the opening address at the 2021 national MND Australia Conference with her teenage daughter Kimi, speaking at the Parliament House launch of MND Australia/Deloitte’s report on the economic cost of MND and the MNDNSW Day of Hope and Remembrance, being interviewed for media outlets such as the Project, ABC News, the Today Show and A Current Affair and appearing in social media campaigns including the Fading Symphony. Read more about Kirsten on the Advisory Group page.

Rania Saab

I am a recent addition to the Your Story Disability Legal Support team, having started in October 2021. Prior to that, I have worked at Legal Aid New South Wales in both family litigation and in Grants. I am based in Sydney, where I have lived my entire life.

I am a person with a lived experience of disability. I am also a mother to three young children; two of whom have been diagnosed with a disability in the past year. I have spent my adult life advocating for the rights of people with disability to have access to services, employment and to the community. I am excited about the work of the Disability Royal Commission and am grateful to work with and support people with disability, their family members, carers and support workers as they share their vitally important stories with the Royal Commission.