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Celebrating small steps towards equality for parents with disabilities

✦ Equal access in all areas of life is something we all expect in society now. However, for people with disabilities, life is not equal ...

Equal access in all areas of life is something we all expect in society now; where we live, how we fill our time – with work or other activities and have friendships or more intimate relationships. Most of us now expect that we can make choices around these aspects of our lives.

However, for people with disabilities, life is not equal, and there are so many barriers to still overcome to achieve that equality. Whether it is trying to get a job, being able to take a plane trip that provides accessibility for wheelchair users or having support to make choices around having a family

Historically, many people with disabilities were hidden away in institutions

Society didn’t have to think about them, or consider their rights. Even though 2023 marks forty years since the Richmond report (which focused on the availability of Health Services for people with psychiatric illnesses and ID) was released in 1983, and the start of institutionalised people with disabilities having an opportunity to live in the community, many still do not have equitable access to every area of life that ordinary citizens in Australia have or expect to have.

December 3rd each year celebrates International day of people with a disability, and we are seeing the voice of this often-marginalised group of Australians becoming louder. We have seen the recent appointment of Kurt Fearnley, as Chair of the National Disability Insurance Scheme (NDIS). This is such an important step towards equality and recognises the importance of self-governance for people with disabilities. However, translating this to everyday lives and choices for parenthood is yet to be seen.

As an organisation whose vision is for ‘parents with disabilities to be equal and empowered citizens’, at disAbility Maternity Care we are still astonished to hear comments and responses that indicate surprise that people with disabilities would want to have a family. Women with disabilities tell us that they still hear comments such as ‘if they can’t look after themselves, how can they look after a baby?’. Imagine if someone made that assumption about us, with the challenges that all of us might face in our everyday lives.

Last week, the World Health Organisation published an article ‘A quest for dignified health care for women with disabilities’. They are to be congratulated on making this topic visible. Many of our maternity documents in Australia still omit reference to women with disabilities as an important vulnerable group within maternity services. When these mothers are invisible in policy documents, how then are they adequately supported in their choices of parenthood?

Over this year, we have been working hard to make mothers with disabilities visible

We have had the opportunity to be represented at conferences, both as invited speakers and to also provide information.

These have included:

  • The Neurodevelopmental and Behavioural Society of Australasia 9th Annual conference as an invited speaker;

  • The National Health & Medical Research Council’s 2022 Research Translation Symposium Panel “An equitable start to life: getting best practice into mother, infant and family care” chaired by Professor Catherine Chamberlain (as an invited speaker)

  • Our information stands at the Tresillian conference and the Australian Doula Association Annual retreat also received lots of interest.

We have also celebrated our inaugural conference “Collaborative Care to support parents with disabilities’ held in October this year. Feedback indicated that this was very successful, and we will be holding it again September 1st in 2023. So put that date in your diaries to come along and join us as a champion of change.

We know that it takes a village to raise a child, and it also takes many voices to make changes. We welcome opportunities to partner with other organisations who align with our values and want to create equality for parents with disabilities. If you or your organisation is interested in becoming a champion for change with us, please contact us so we can begin working together in 2023 to achieve these goals.

About Dr Namira

Dr Namira Williams is the founder and CEO of disAbility Maternity Care, an organisation which focuses on promoting inclusion for parents with a disability. Namira completed her PhD in 2020 with her thesis “Travelling with two: balancing identity and risk in mothers with intellectual disability”. Her findings have strongly influenced the goals and direction of disAbility Maternity Care. Namira has lectured with the University of Newcastle since 2015 and brings to her work over 30 years’ experience as a midwife and nurse. Her career has focused on working predominantly with vulnerable groups of women, including Indigenous women, young teen mothers, and women from culturally and linguistically diverse backgrounds. Her contribution to improving outcomes for families was recognised when she was awarded ‘ACM Midwife of the Year 2013 (NSW)’. Namira is currently a carer representative on the NSW Health Agency for Clinical Innovation Intellectual Disability Health Network Executive Group, bringing to this her lived experience of intellectual disability and autism within her family.

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