A support network for mothers with acquired deafblindness is offering a group of women a safe place to share their concerns and grow in confidence. Else Marie Jensen and Anette Rud Joergense from Denmark, who are consultants for people with acquired deafblindness, explain how it works.

Nina, a young mother with two small children, has Usher 2. Since 2007, she has taken part in a network group with four other mothers with severe hearing and vision impairments. `If I didn´t have the network group I would only be able to talk to professionals like you', says Nina. `That means the world to me and I couldn´t live without it. It´s nice to be with people who feel the same way I do.'

Through our work as consultants we were often asked: `How do women with acquired deafblindness cope with their roles as mothers, wives and colleagues?' We didn't have an answer to this so we set up a network group. At first, the women met frequently to get to know each other better; now they meet every three months and have communicate regularly by email.

Several of the women describe the group as a turning point in their lives. 'After I met these other women I certainly feel less lonesome,' says one. `I feel empowered by the sense of belonging. It´s nice. I feel a sense of security knowing that others are in the same situation.'

A breathing space

In other social situations, the women have to use a lot of energy to explain their situation to other people. Many times it doesn't actually help, how can other people really understand their situation? In the group, the communication is on their terms. Everyone knows what the others need. So they can relax, and some of them feel that, in the group, they can be themselves without simply focusing on sight and hearing.

Nina says: `Being in the group is a relief and a great breathing space. When I go home afterwards, I can tackle my hard everyday life. Not an impossible life, but a hard one, and then I know that we´ll see each other again soon and share experiences.'

The five mothers learn from each other, which gives some of them more courage and self-confidence. When someone hears what another woman can do, then she thinks, `I can also do that'.

`Another thing I´ve learnt from the women in the group is their optimism, which I admire very much,' says Nina.

`Time and again, I think about it in my everyday life. If they can manage, then so can I.'

Themes in the network group

In the group, the women talk about many different problems related to living with a hearing and vision impairment. For example, some find it difficult to tell other people about their disability. They are afraid of other people´s reaction.

At one meeting, `Helen' talked about her fears of meeting the parents in her daughter´s new school. The teacher wanted each parent to introduce themselves and Helen wanted to tell them about her vision and hearing problems. She needed the other women's advice to prepare her introduction, because it is hard for her to explain her problems to strangers. `How will they look on me when I have revealed my secret?' she asked.

That started a useful discussion where each person described their difficulties in telling others about themselves. They all know this feeling.

It is also important to say that the women are at different stages of adjusting to their disability. These differences also encourage dialogue in the group so that the women learn from one another. Before the school meeting, some group members emailed Helen to offer her support and then she was able to talk about it at the group afterwards. Strong bonds are formed between the women.

The role of the professionals

In the networking group all the members are equal, and our role is to facilitate the group process. At first we were responsible, together with the group members, for setting the framework of the meetings, but increasingly the women take on this role themselves.

After one meeting, one of the group members texted me: `I never thought, that I should be so lucky and participate in such a good group. I feel safe when I´m together with the group, even though sometimes I cry and sometimes I laugh.'

Some facts about the group

• The youngest woman is 35 and the oldest 50.
• Two of the women have small children.
• Most are diagnosed with Usher 2.

One woman uses sign language, although she can communicate with speech if the conditions are right.
Some have known their diagnosis for many years, others were diagnosed more recently.

Three members have a disability pension, two have a part-time job, working between 20-25 hours a week

`No one knows what my everyday life is like and how much energy I spend on picking up my children. Not even my husband knows that. He understands a lot – but not 100 %, and neither do you professionals or my friends. It´s much easier in the network group. In the networkgroup we know how each other feels. The other women in the group don´t need long explanations but just nod and say: I know how you feel, when I´m telling about situations from my everyday life.' (Nina 36 years)