Most people would not ask a woman with a disability when they are going to have children because it is just awkward. Sometimes that question is not even thought of.
Disabled Mothers are now enabled with tools, resources, guidance and support services
Dr. Namira Williams believes in supporting parents with a disability to become the best parents they can be. She honours the special connection one has with one's birth mother and that is what all mothers and their children should have the opportunity to experience and enjoy fully.
Dr. Namira Williams, CEO & Educator of disAbility Maternity Care believes that all women have the right to establish relationships, have consensual sex, and become mothers should they so choose. disAbility Maternity Care was established to provide women with disability and service providers information to assist in supporting them to become mothers.
Early Days
As a child growing up in Fiji, Namira had always known she wanted to work in health. She saw a lot of poverty and health disparity around her. It put her on a career path to work with disadvantaged groups in Australia and other countries.
People with disabilities have always somehow been a part of Namira's life.
A friend of her mother's married a wonderful man who had cerebral palsy, and he became a mentor to her in her adolescent years. Later on, during her nursing training, she volunteered for a social youth group for young adults with intellectual disabilities. Since then, she has had three people in her extended family with a disability.
Taking action to make a change
Namira began disAbility Maternity Care when she realised that the current maternity system in Australia generally does not meet the needs of women with a disability.
Having worked as a midwife for over 30 years, she has seen changes to better meet the needs of families. Fathers are now expected to be there at the birth, and birth centres have even been set up. These are some of the improvements that have taken place over the years.
Despite the rhetoric of social inclusion for people with a disability, most people with a disability are not well supported to have children. This is especially so for women with an intellectual disability. And when they do, there’s a high chance that their children will be removed from their care. This creates trauma for the mothers, the family, and the infant, as well as health workers. "I have experienced this both at work and within my family. We know the consequences of child removal from the Stolen Generation in Australia. What we have seen is the devastating impact of this where intergenerational trauma is still affecting young children now.", says Namira.
What's really important when it comes to work-life balance?
Balancing work and family life is no walk in the park for Namira. She has a golden rule she lives by that helps her stay focused and balanced. She has learnt that the best way to cope is to focus on the most important issue at the time. It could be playing with her grandchildren or presenting a webinar for her business. She knows when she focuses on what is really important and be fully present, she can make it work.
What also helps is the fact that Namira works for herself. She is able to choose and decide what she wants to be involved in, and beyond her business, she teaches at the University of Newcastle as a casual academic. She also undertakes some research projects. Having the option to choose how committed she wants to be in her projects means that she can juggle her passion for disAbility Maternity Care and her home commitments much better.
Last year she completed her PhD in Midwifery with the University of Newcastle having undertaken research in maternity care for women with an intellectual disability.
Namira is a mother to 3 children and now a grandmother with 4 grandchildren. Her family is the most important part of her life and has also been the inspiration for what she does. She would spend her last dollar on her grandchildren and experience their joy and being with them. For her, it is the memories of one's family that keep people alive and inspire one to keep going.
She gives time to herself as well and enjoys reading, gardening and sewing. She makes time to have coffee or lunch regularly with her friends who are mostly midwives and like her are working to make a difference for parents.
disAbility Maternity Care
The primary goals of disAbility Maternity Care are:
Promote awareness and knowledge of the needs of women with a disability as they journey through pregnancy, birth, and early motherhood.
Promote the concept of inclusion and the rights of women with disabilities and partners to have a family.
Provide up-to-date information, training, and links to resources to enable health and service providers to meet the needs of these women.
Support for new parents is crucial to their success. “This can mean the difference between some mothers taking their babies home from hospital with them or not”. To address this, disAbility Maternity Care works with NDIS participants to coordinate appropriate supports and help put them in place during pregnancy so these mothers can succeed. They do not provide clinical services and do not replace medical or health advice from the client’s particular doctor or health practitioner.
A Mother's Vision - Samantha's Story
Samantha was born with an idiopathic eye disease called Pars Plantitis as well as Intermediate Uveitis.
At a young age, Samantha knew she was meant to be a mother. Her family had doubts about her ability to care for her babies. That did not stop her.
Samantha was clear about becoming a mother and she wanted to give birth before she went fully blind so that she could see her babies. She was given that gift, and the joy she felt at seeing her babies for the first time gave her the strength to flourish in her role as a mother.
As a vision-impaired mother, Sam faces many frustrations. She cannot take her children to the park or to doctor's appointments as she cannot drive.
“I get hurt a lot too from running into things even with my cane or just at home. Luckily I have found ways to make sure I never hurt the babies when I carry them.”
Being a mum is tough. Being a disabled mum is way tougher. Samantha has found ways to use her heightened senses to help manage her everyday life as a mother. She relies on her acute hearing to deal with caring for her children.
In spite of her disability, Samantha has seen herself as a mother from a long time ago, and she is making this a beautiful reality for herself.
An Interview with Jackie Rosen: Pregnancy with Disability
Jackie Rosen, from ‘What’s the difference’ podcast talks about her disability, decisions to become pregnant, and how her cardiac and other conditions have affected her pregnancy. She provides an honest, open and humorous account of the challenges encountered in the first half of her pregnancy.
There's No Stopping Her - Kara's Story
Kara became paralysed by a rare autoimmune disease called NMO (Neuromyelitis Optica).
She was already pregnant at that time and she had a C-section because a natural birth was not possible due to her paralysis.
Kara had to deal with difficulties moving onto the bed but she had an amazing team of nurses who helped and reassured her. They got her safely through the delivery.
After Winnie was born, Kara's husband was allowed to stay with her the whole 2 weeks she was in hospital. Kara appreciated the support she got from the hospital setup as it gave them meaningful time to bond as a family. She could enjoy being a first-time mother, knowing she had support around her.
¨Ask for help when you need it.¨
For Kara, her children are her motivation to gain independence. She may be paralysed but that is not stopping her from moving ahead in her life as a mother.
Never Stop Growing
Namira looks ahead to her future plans and she hopes to still be on the Mid-North Coast. She would like to see some changes for parents with a disability happening as a result of their work.
They are currently providing education webinars on topics to assist maternity staff and midwives provide better care for these parents. They are beginning to provide specific support services to women who have an NDIS plan, and Namira is eager to grow her business so that all women with a disability are provided the support they need to become a mother.
COVID-19 did not stop Namira's business. In fact, she continued to build the business over the pandemic year, and being on Zoom actually made it easier for them with education.
Being available online meant the business attracted a lot of interest internationally. They have even had mothers with disabilities contact them from overseas. They did not feel supported in their countries to become parents and Namira's initiative was the voice they needed to hear to find a way to get support.
Being a mother is a one-in-a-lifetime experience. Sometimes mothers may be unable to parent full-time, but they need to be supported to be the best mothers they can be, whatever their capacity is. Namira sees every family has as having its strengths and challenges, but it’s how they are supported that makes the difference. Supporting parents with a difference is what disAbility Maternity Care aims to do.
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