Someone to listen: the value of peer support

Sharon Platts, a visually impaired mother from Carshalton, talks to DPPI Information Officer, Shanta Everington, about her experience of service providers, how she would have valued peer support, and how the right attitude can make all the difference.

My children are 15, 18 and 20 now but at one stage I had three children under five. At times, it was undeniably hard. One of the main challenges I encountered as a visually impaired parent has been other people's attitudes. I remember feeling fobbed off by the midwives at parenting classes ‒ if I had a question, they'd treat me as though I was stupid, either being dismissive of my concerns or looking for problems that weren't there. I was made to feel inadequate because of my disability.

The need to feel heard

All pregnant women want the same thing ‒ someone to share your fears with and to understand your point of view. Disabled women are no different. We need our fears and questions to be taken on board without judgment. The right attitude can make all the difference.

I got divorced when my youngest was three and needed advice but didn't know where to turn. Because of previous negative experiences, I had built up a barrier and was defensive of health professionals. I didn't feel able to trust them.

However, I had a very good experience with my health visitor, who really listened to me. She managed to help me break down those barriers. The key things were that she was laid back and non-prescriptive in her advice; she had a positive attitude and treated me with respect. She made me feel heard.

Adapting

With my first baby, I had to learn how to put a babygrow on, the easiest ones to use, how to change a nappy, feed and bathe my children. I would have liked to have been shown by the midwives or health visitors in a way that was accessible to me as a visually impaired mother. Going out was a challenge ‒ I'd have one in a pram, one in a sling and one on reins ‒ but it was important for me to get out and about independently. As my children grew, so did my confidence. You find ways to adapt and so do they.

Advice to health professionals

My advice to health professionals working with disabled women would be:

  • Listen to the disabled woman about how her disability affects her.
  • If you are unsure about a disabled woman's needs, ask her to explain them to you.
  • Where appropriate, ask if you can get a disability specialist involved.
  • Find out what the woman's main concerns are and address them openly together.

It's these simple, yet often overlooked, things that can have the biggest impact on disabled women's experiences.

The value of peer support and user-led services

As a new parent, I would have also liked to have been put in touch with other visually impaired parents to find out how they did things. We could have learned a lot from one another ‒ given each other new ideas to think about ‒but I didn't know anybody in the same situation as me. I think it would be invaluable and it is still very much needed by new disabled parents today.

When my children were younger, a local visual impairment organisation started up a group for visually impaired parents but it never really took off. The idea was that the parents would be running it but in reality, this didn't happen as they did not relinquish control to us. We wanted the group to operate informally, taking turns in each other's house with our children present but the people running it said it had to take place in a local centre and we couldn't bring our children along! They were well intentioned but ultimately, this was an example of how not to do 'service user involvement'.

Before I had children, I was part of an 'adventure club' for the blind, which met once a month in people's houses. It worked really well and I think the same model could be applied to parenting classes. At the end of the day, it comes back to what I said earlier about the importance of service providers really listening to and responding to disabled parents' needs rather than paying lip service to them.

Moving on

When I became a mum, I had a fear that my children wouldn't love me because I couldn't see. But this proved unfounded. Having a disabled mum is the norm to my children and I am proud of the sensitive, empathic young people they have become.

I'd like to think that a lot has changed since I had my children but I still think there is a lot to be done. I approached DPPI for ways to get involved with supporting other disabled parents as the support networks are not always there for people. What helped me as a new parent was having someone to listen and offer non-judgmental, non-prescriptive advice. What would have helped me even further would have been to have a peer support network to learn from others who had trodden the path before me.

Note from DPPI: Sharon has kindly offered to volunteer for DPPI in any peer support work that we may set up in the future and we look forward to working with her.

Published: 6 February 2014

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