From Janelle: I am really passionate about supporting mothers of all abilities throughout their mothering journey. While I usually talk about pelvic health, mental health and menstrual cycles challenges – there are a broader range of challenges that can be experienced, especially by mothers who identify as having a disability. Disability may be something you can physically see such as needing to use a wheelchair or a walking cane. It can be less visible like ADHD, arthritis, hearing loss or intellectual disability. Going by the challenge I had finding a photo for this blog post, we are much more familiar with being a mother to a child who has a disability or developmental challenges, rather than seeing mothers who have a disability.

You may know that prior to working in women’s health I spent many years working in the disability sector. I have recently had the honour of connecting with Namira Williams, founder and CEO of disAbility Maternity Care, an organisation that supports parents with a difference. Through working as a midwife and lived experience of disability, Namira understands the importance of finding the right support to help women succeed as mothers with a disability. disAbility Maternity Care provides NDIS Specialist Support Coordination to link women in with services.

As we advance the cause of mothers and the support that we biologically need, we need to be inclusive of all mothers. So Namira has written the following guest blog post. Perhaps it will be useful for you personally, or the resources may be useful to increase your awareness or support another mother in your life.

 

From Namira: Many women with a disability are not usually asked when they are going to have children. There is often no expectation for them to become mothers, unlike their peers. Whilst this may be due to discomfort in broaching the subject, it also comes from an era when people with disabilities were actively discouraged from parenting.

Despite social changes and inclusion, women with a disability still face significant challenges in becoming mothers. Others may doubt the ability for these women to manage the mothering role. This, together with a lack of appropriate services can leave these mothers feeling unsupported.

When others doubt our ability to do something, we can have doubts ourselves. It’s important to remember that becoming a mother the first time is often difficult for all women as we learn about ourselves and our baby. Babies don’t come with manuals, and developing our mother identity is something that grows through our experience of becoming a mother. Most women feel that they don’t get mothering ‘right’ at the beginning.

Having a disability doesn’t mean we can’t become mothers. It doesn’t affect our ability to love our babies. It means we have to find an alternative way to do things in our mothering role, and depending on the type of disability, this will vary. The most crucial things to enable women with a disability succeed as mothers is to have good support, and to link into services as early in pregnancy as possible.

Support for mothers with a disability: finding support for both mother and partner will vary depending on whether its emotional support, peer support or physical support to manage pregnancy, birth and early mothering challenges. The key is to find and link with family, friends and other parents in the community who are going to provide positive and enabling support through your journey. As we have leant during recent Covid times, support can be online as well. If there aren’t many local online groups, there are many mothers/parents with disability who post on Instagram and can provide good connection and peer support. Knowing that we are not alone on this journey is critical.

It is also important to find knowledgeable and supportive health providers who can guide you with managing the changes that pregnancy and birth bring physically and emotionally. If you have a physical disability, pregnancy changes may exacerbate existing difficulties. Your specific disability is going to define what your needs will be and how you will best prepare for becoming a mother. You and your partner will need to have open and comfortable conversations with health providers around this so that you can be linked with the best support and services available.

Finding the right services: it is important to start early in pregnancy. If you have an NDIS Plan already, you will likely need a review of this to increase funding to meet your needs in pregnancy and after your baby is born. You will need to talk to your NDIS Support Coordinator to organise and plan for this. If you don’t have an NDIS Plan, it is important to consider applying for one through the NDIS Access portal for the additional support you might need.

Linking with other health or disability providers can be very helpful. For example, having a specific Occupational Therapist (OT) assessment can help plan for any modifications that will be needed in home to prepare for your baby. OTs can also assist in creating appropriate tools to assist or learn parenting skills that will be specific to your needs.

For women who have cognitive impairments, having a disability support worker or doula who accompanies them to appointments can be beneficial. Not only providing emotional support but also assisting in interpreting language used within the appointment into understandable terms.

Good support and linking to key services is crucial in helping all mothers succeed, but there are limited specific services for women with a disability in pregnancy. disAbility Maternity Care provides education and resources to support parents with a disability. The Women with Individual Need clinic is currently the only specific clinic in Australia for mothers with a disability. These organisations can be contacted to find out more about supporting this group of mothers.

It’s time to change the conversation and enable choice for women with disabilities to become mothers. All mothers matter!