Feature

Different ways to be

Being a woman with a disability may mean not living up to other people’s images of perfection — or your own. Mandy Garner reports

Disability issues tend to get lumped with health matters so why am I reviewing a book of short stories and poetry by disabled women for a health magazine?

As Lois Keith, the editor of Musn’t grumble, published by the Women’s Press, says: ‘The emphasis is away from the “medical model” of disability, which equates disability with illness. Disabled people are rejecting the medical model. What disables us is a disabling society, that there is no legislation which supports us. Really disability is a political issue, not a health issue, but it usually gets put on the health page. This is not a book about categories.’

However, what is also true is that Musn’t grumble includes writing by disabled women and by women with disabling illness, such as ME. In this respect, it is the first book of its kind.

The book is political on many levels, particularly the personal. It contains poems and stories about love, sexuality, pain, rejection and feelings of helplessness. Keith says that the book gives ‘a sense of being allowed to enter the lives of the women writers. Often non-disabled people feel scared to know about this, although the book is not meant to threaten. Its aim is inclusive’.

Maria Jastrzebska, one of the contributors, who has ME, adds: ‘For me, the inclusiveness of the book was very affirming. I felt welcome. I have only been disabled for a number of years. My experience is different from a person with a permanent disability or who is disabled but as fit as a fiddle. There are differences between us. It is good to explore them and to bring them together. Often we are put against each other. It’s the old divide and rule policy. The hierarchy of illness, disability, mental and physical health. I got a lot of strength and inspiration finding out about what other people with disabilities had done and how they were fighting back. I felt we had a common cause.’

Keith says all the women who have contributed to the book have been encouraged by being in it, and that it is vital that there is a book like this for both disabled and non-disabled writers and readers. She believes that by writing you ‘name’ your experiences and in doing this you become more able to handle them and to change other people. Language plays a vital part in this process. In a poem, Keith writes of the exclusion imposed on disabled people by language itself. She confronts this ironically, trying to find a new inclusive language, ending the poem: ‘I will wheel, cover and encircle. Somehow, I will learn to say it all.’

The fact that Musn’t grumble is a book by women is important. Maria Jastrzebska, who is a poet and has co-edited a Polish women’s anthology, believes that this is because women are marginalised anyway in the literary and arts world, and that disabled women are doubly marginalised. Her poem The horns of my dilemma is about being invisible. She says: ‘I don’t look ill or use a wheelchair. I am Polish, but people assume I am English. They assume I think like an English person. I am a lesbian and people assume I am not. So many people experience disability in some form, be it epilepsy or arthritis, and yet the way everyone carries on it is as if there were no disabled people and they didn’t exist except in a corner.’

In the same poem, Maria talks about how she tries not to frighten people with her illness, ‘working overtime to bridge the widening gap’. At the same time, she has to deal with those who would seek to deny that she is ‘different’. As she says: ‘Why is it people either think I’m just like them or else like nothing on this earth and no part of their lives?’

The writing is of a high standard which has, says Keith, surprised some people who expected it to be a more ‘worthy’ kind of book. This is a testament to what another contributor, film-maker Ellie O’Sullivan, says is the waste of talent, often caused by limited expectations about what disabled people can do, combined with other ways of trying to isolate or silence their voices — although she says there have been some positive moves against this. But the pace of change seems very slow. O’Sullivan says that although there are some excellent writers in the book, they have not been responded to as writers.

Both O’Sullivan and Jastrzebska are included in an appendix of letters between contributors and Lois Keith. This section adds a different dimension to the book as the exchanges involve debates on subjects such as passivity and activity and the difference between life-threatening illness and disability.

In one of her letters, Maria Jastrzebska says: ‘Surely feminist/women’s creative writing doesn’t all have to be overtly militant, explicitly angry with strong heroines and neatly wrapped up triumphant endings. You (Lois Keith) seem to have a blueprint of how you’d like us to write but maybe we don’t all fit into the mould.’

In an interview, she adds: ‘For people with ME the active/passive issue is such a big thing. Its about the way the world is organised. The focus is on doing. You have to be seen to be active, for example, in your job or at the gym. It’s do, do, do. When you have ME, you have to be, not do. People like us do not have a valued existence in our society. If you are just being, you are not seen as valuable. It’s OK to be. You don’t have to be doing to prove that you are worth something. My cat is a great help. Cats are great at just being and we adore them.’

Ellie O’Sullivan has arthritis and recurrent breast cancer. Although the cancer is life-threatening, she says she finds it more difficult to come to terms with her arthritis because it is visible and it makes her feel helpless.

O’Sullivan says that media portrayals of disability are a fundamental part of the ambiguity she feels about how she is perceived and how vulnerable she is. Her short story, The visit, is about an occupational therapist coming to her home, and her feelings about being shown to be in a helpless position in front of her daughter. She says some of her friends have found the story embarrassing because she does not usually show her helplessness to them.

The book’s overall aim is political, to challenge the view of disabled people as a burden, as frightening and different. It achieves this and much more. Reaction to the book has been generally positive, according to Lois Keith. She says one social worker friend thought it should be essential reading for his colleagues.

The most important thing about the book is that it appeals to all women since it talks about subjects that affect all women. For example, Ellie O’Sullivan says The visit is essentially about a feeling that she had somehow betrayed her daughter by not living up to the image of what a mother should be. Many women will recognise the guilt of not living up to images of the perfect mother.

Maria Jastrzebska talks about friends who have said they would like to have ME just to rest. In the poem Friends she says: ‘This stillness after the curtain comes down / this is how tired women without a moment to themselves define luxury.’ She comments in one of her letters that the poem questions how much ‘ill health is caused by the unhealthy stressful pace of life imposed on us’.

Musn’t grumble is a comment on life today. It talks about and speaks to people in all their diversity.

Musn’t grumble is published by the Women’s Press at £7.99.