‘Women With Disabilities and their Families’
By Alex Gregg. Copyright 1994.
Women with disabilities experience the same joys and frustrations with their families as other women, but for women with disabilities, because of the nature of their impairments and the barriers presented by an inaccessible world, meeting their own needs and those of their families is more difficult.
Many women with disabilities are constantly battling low energy levels and tiredness as they push their bodies to keep up with the demands of family life. Many manage as best they can without the support of services and often rely heavily on their children or their spouses. The limitations caused by a disability constantly affect a family’s activities and the stress that can result from carrying an extra burden of disability while trying to lead a ‘normal’ life can have detrimental effects on relationships with the family.
Mothers with disabilities worry about the effects of their disabilities on their children. They worry about being dependent on their children for care and they feel they are denying their children a proper childhood. They are concerned that their children’s friends tease them about their “spastic” mother. They worry about how to deal with children who feel responsible for their mother’s safety. They feel guilt about making too many demands for help with household chores. Many mothers with disabilities also feel guilty about not being able to participate in activities with children because they are physically unable to or the venue is inaccessible. Adolescence can be a particularly trying time as women with disabilities may need to deal with their children’s resentment and anger about the effects of the disability on them, without feeling guilt or grief. If women have a supportive spouse or partner they can feel guilty about the demands placed on them. If women with disabilities are single parents, or have a non-supportive spouse or partner, then family responsibilities can become overwhelming.
A great deal of the burdens of family responsibilities would be lightened for women with disabilities if women could access services available to them. However, many women with disabilities are overburdened and consequently don’t have time or energy to become involved in consumer organizations to find out what help is available. Many women may not be aware of the technological aids available to make life easier. Women with disabilities who can’t access public transport or who can’t drive or who don’t have access to a car can become isolated especially if they don’t have supportive family and friends.
Many women with disabilities cannot afford to buy the services that would help to make life easier, such as home help. The cost of modifying their homes to alleviate some of the physical burden may be out of their reach. Often if there is money to spare, women with disabilities will deny themselves and spend it on their children even if using it to buy help for themselves would have made life a bit easier.
The desire to work outside the home is just as important for some women with disabilities as it is for other women. In some cases, the higher cost of disability may impel women with disabilities to work so they can offset the costs and be in a position to buy whatever they may need to help them live an independent and as full life as possible. However, trying to juggle the demands of work, as well, can cause enormous strain especially if this is exacerbated by lack of awareness in the workplace of the needs of people with disabilities and the physical strain of constantly coping with inaccessible buildings and lack of facilities for people with disabilities.
Society expects women with disabilities to be even more compliant than women without disabilities. There is pressure on women with disabilities to accept their lot in life and to be thankful for whatever assistance they may receive. Women with disabilities who fight for their rights or for better services are seen to ‘have a chip on their shoulder’ or to not have accepted their disability. Women with disabilities appreciate the support they receive from their family and friends and many cannot manage without it but it can be frustrating to be constantly reliant on others and to feel constantly in debt to them. Frustration, anger and resentment often accompany a woman with disabilities’ struggle, often against overwhelming physical odds, to have fir themselves and their families the same lifestyles, opportunities and aspirations as other women. If women with disabilities are further disadvantaged by being Aboriginal or are from a non-English speaking background, then coping with everyday family life is even more difficult.
Women with disabilities are coping with their family responsibilities with resourcefulness and endurance. Their children are learning to be responsive and responsible and have opportunities to acquire skills that are rare in families who don’t have members with disabilities. Women with disabilities are further strengthened by contact with other women with disabilities who have families and with whom they can discuss similar problems. Services are gradually acknowledging that women with disabilities need help even though they may have a spouse or partner, or children, or they may be working. Women with disabilities are increasingly demanding and exercising the right to have the same lives and opportunities as other Australian women.