An expert on maternity services is urging the government to introduce national guidelines on disability identification and routine data collection for women across Australia.
A study by the Judith Lumley Centre at Latrobe University, published in June of this year, was the first of its kind to investigate the way maternity services in Australia identified disability.
It found most services didn't have processes to identify women with disabilities or couldn't estimate how many women with a disability were seen at their hospital.
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Charlie Benzie, a lecturer in midwifery and the lead researcher, says she'll be presenting the findings to state and federal government in the coming months, in the hope it leads to a policy rethink that will assist women with disabilities who give birth in Australia.
With only a quarter of public maternity hospitals reporting adequate services for women with disabilities, Ms Benzie says the time is now to implement disability identification – which would lead to a better understanding of the needs of women with disabilities.
"We can't understand and adequately support the needs of women with a disability when we're not actually identifying and collecting data on them in the first place," she says.
And she says improved identification and more specialised services for women with a disability is the answer.
From midwife to mother
Allyson Hickey, who is Deafblind, studied midwifery herself.
She found that not only was there a lack of specific disability support training in her education, but her workplace was not inclusive.
Ms Hickey says when she was working, she faced discrimination from other midwives, which made it difficult to continue doing what she loved.
"They said, 'If you can't see, then why are you a midwife? You shouldn't be doing this job'," Ms Hickey says.
"For someone like me, who already feels a significant amount of shame about my disability, these comments were really diminishing."
When Ms Hickey became pregnant, she knew she wouldn't feel supported in a hospital, so she birthed at home.
"I saw time and time again how policies and healthcare professionals negatively impact the birthing experiences of women with disabilities," she explains.
"When you're in the most vulnerable time of your life, you need people to support you — especially if you have a disability."
But she still needed to go to the hospital for appointments twice a week, and found she was given information she couldn't access.
'You're supposed to know all the answers'
Fiona Woods is a disability advocate, the president of Blind Citizens Australia – and is herself blind.
She says the biggest barriers women with disabilities face when they give birth are negative and ableist attitudes.
"People always question your ability. For most people with a disability, the minute you're seen in hospital, you're asked so many questions about how you're going to be able to manage," she says.
"Somehow, you're supposed to know all the answers, even though you haven't had any babies before."
This was the case for Ms Woods, who has had six children — all of whom were delivered by caesarean.
"The whole feeling of being in hospital was quite alienating, and particularly with my first child, there were lots of expectations — and lots and lots of questions," she says.
The solution is clear for Ms Woods.
"We need birthing in Australia to be accessible for women with disabilities. Most of all, we need positive attitudes and a belief that [women with disabilities] can be effective and good parents," she says.
"Midwives need more education. I think they could start by expecting that their patient groups will include women with disabilities."
Cherise Smith, a midwife and coordinator at The Women with Individual Needs (WIN) Clinic within the Royal Women's Hospital, provides individualised, disability-informed antenatal, maternity and postnatal care to women with disability.
"The WIN Clinic is one of its kind in Australia — and it shouldn't be. People with a disability have a right to have a family, just like anyone else," she says.
"Pregnant people with a disability do have specific and individual needs, but it shouldn't be so hard to access extra support. In my opinion, more funding needs to be allocated to provide care that meets the specific needs of people with a disability."
Ms Hickey had a positive home-birthing experience, but she believes there needs to be a huge cultural shift in the way maternity services support women with disabilities.
"Anything that negatively affects all women birthing affects women with a disability so much more," she says.
"We really need to be supporting women with a disability as opposed to breaking them down."
