Working together for change

Lynne Hester, of Cambridge, a visually impaired parent, gave this presentation at the Joseph Rowntree Foundation’s conference- Partnership and Change: Maternity Services and Disabled Parents.

I had my first baby, John, in 1994 at the Rosie Hospital, part of the renowned Addenbrookes Hospital in Cambridge. It is not fine buildings and international reputations that make pregnancy, childbirth and early parenthood great, but often the people who support and share in experience.

I remember so well the community midwife who told me she had been thinking about the environment at the hospital and thought maybe one of the single rooms would be easier for me to feel confident and comfortable in – and what did I think? She had spent time putting herself into my shoes, trying to understand how I would manage within strange environment and with that cocktail of exhaustion and elation which a new baby brings. She also tried to find some information for me in Braille or on tape, or at least who would have some. We worked together on this.

Another family I know had a midwife who assisted the father, who was visually impaired, to become familiar with the delivery room layout so that he could be independent and supportive to his partner during labour. Health professionals and other organisations must ensure that needs are identified, and that discussions with disabled parents take place so that information is passed on and each person knows their part.

Recently a new young mother in another area of the country, because of her visual impairment, was still in a maternity unit 19 days after her baby’s birth. Professionals still panic and push what they don’t know to the back of their minds, feeling they should know, or there must be someone who is more responsible for a disabled parent than they are. They should find out about what is necessary in early pregnancy, not when labour begins. Parents need to gain confidence, which springs from people around them who acknowledge their impairments and difficult areas, and support appropriately.

Linking together to provide information

Disabled parents have the extra disability of not being old enough for many voluntary organisations set up to support them. It has been irritating to be told that I am too young and not like the majority of service users. The big charities promote their services to disabled children and older clients but which large charity for visually impaired people campaigns and voices their service users’ needs as parents? These are the very organisations that have huge information sources, which can provide information in various formats including Braille, tape, disk, CD and large print.

The Royal National Institute for the Blind (RNIB) can access what is already available in these formats and know whom to contact. Many organisations have produced information about pregnancy, childbirth and early parenthood, which visually impaired parents have accessed via RNIB. Unless we link together, individuals undertake time-consuming and costly transcriptions, which are already out there, if only we knew where.

Many publications that I borrowed from the RNIB in Braille were out of date- the room temperatures stated in the texts were incorrect, not taking account of the new guidelines brought out following research into cot death. A book on breast-feeding told me I had to wear a nursing bra or support by breasts with a bandage to breastfeed successfully! Luckily I knew that none of my friends were doing this and found out I was reading a 1960’s epic.

I recently read a list of the new Braille publications that The Pregnancy Book, produced by the former Health Education Authority, was available at a cost of £6 to visually impaired parents, but given free to other pregnant women! We need to work with voluntary organisations to produce new information, determine pricing policy and discard old information.

Smaller, local disability voluntary organisations may guide visually impaired parents effectively, knowing others who are parents, or knowing about equipment such as taking thermometers, tactile or audible labelling systems for medicines and so on.

In Cambridge, the local voluntary organisation for visually impaired people and social services team for sensory impairments share the same building. I asked about networking with other parents when my son was born. Service providers remembered this issue coming up before and sharing notes. They realised that I was not only the only visually impaired parent but there ware quite a few clients with young children. We were all invited to a meeting: here were 10 families from the small area of Cambridge city and surrounding villages.

Within my job at Cambridge City Council, I provide disability information and advice to the voluntary sector but also to the staff of 15 community centres. Constant requests for disability awareness training and information led me to put together a resource pack for these centres. It includes: a set of good practice guidelines that I wrote; information leaflets produced by large charities to assist staff with communication skills with deaf people; practical suggestions and skills in guiding visually impaired people; and a booklet challenging stereotyped ideas about people with learning difficulties. You do not have to start from scratch but can build on what is out there. You can assemble resource files and involve disabled parents and their organisations to give ideas and assess contents. Health workers need to identify the physical and attitudinal barriers which disabled people face in their daily lives. This can be achieved by providing disability equality training.

The Disability Discrimination Act puts a duty on service providers to make adjustments and not exclude disabled people. But we must go forward, not in a sprit of just trying to avoid being taken to court, but to learn from people from all parts of our communities, and be positive and creative in future services development.

First published in Disability, Pregnancy & Parenthood international, Issue 41, Winter 2002/2003.

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