“You don’t know what it’s like to wake each morning and see an empty cot in the room” were the words expressed by a mother with an intellectual disability.
My name is Namira Williams and I am the founder of disAbility Maternity Care. I am a midwife, a mother to three children, and grandmother to two boys and two girls. Those words were spoken by my daughter Sally, and my passion for disAbility Maternity Care was conceived that day. I had worked as a midwife for twenty-five years, and always tried to improve the health and wellbeing of the women and families I cared for. I had worked with women in developing countries, with our Indigenous families in Australia and women from migrant communities. Over the years I have seen the health of these mothers improve, but for mothers with intellectual disability little has changed.
My daughter Sally has a mild intellectual disability and autism. Whilst she was growing up, I always envisaged that her life would be inclusive and she would have a family of her own one day. Just like her siblings. She was strong minded and adamant that she would learn to drive a car, which she did. I believed that if she can learn to drive a car, she can learn to be a mother one day.
That day finally came when her daughter Daisy was born. Sally had met a young man (also with an intellectual disability) and had moved in with him. Daisy was a planned pregnancy, and Sally booked in early to maternity services. Through events, Child Protection services became involved during Sally’s pregnancy. Four days after Daisy was born, a decision was made for her to go into kinship foster care, into the care of myself and my husband. Despite my knowledge as a midwife and our support in Sally’s pregnancy, I couldn’t stop Daisy from being removed from her mother’s arms. Whilst Daisy lives with my husband and myself, we have supported Sally in her mothering, so now as a 6 year old, Daisy says ‘Mum’s coming today, YEAHH’.
This traumatic event as well as having cared for women with other disabilities as a midwife, and finding there were no resources to care for them appropriately, spurred me on to developing disAbility Maternity Care. Prior to Daisy’s birth, I had commenced doctoral studies specifically in the area of maternity care for women with intellectual disability. My research concluded in 2019, with findings that showed that many health providers do not understand disability well, how to adjust information for women, as well as a lack of resources to support them. Mothers with intellectual disability were often stigmatised and labeled as unable to be ‘good mothers’.
It is through my own family experiences, and understanding how important the role of a birth mother is in their child’s life, regardless of whether they parent full-time or some of the time, has made me passionate about changing the conversation for mothers with disabilities.
disAbility Maternity Care’s service vision is for parents with a disability to be supported from pregnancy to early parenting through well planned care, education and linking to support services early. We focus on the period from early pregnancy through to early parenting.
Our service provides:
· information for parents with a disability and their families/carers;
· Information and education for health and other professionals to assist them provide care better;
· A resource site that links with other organisations that have relevant information;
· Video resources and relevant resources for purchase on the website.
We are committed to supporting parents with disabilities and partnering with other organisations, like Intimately, who have similar philosophies to promote inclusion. Together we can take the ‘dis’ out of disAbility. We welcome feedback and suggestions to meet your needs better.