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The community must value caregivers

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HealthWiki > A Health Handbook for Women with Disabilities > Chapter 15: Support for caregivers > The community must value caregivers

Both women with disabilities and caregivers—whether they are family members or paid assistants, whether they are men, women, or children—are valuable members of our communities. They need to be supported in real and warm relationships within the families and communities where we live, work, and share our joys and suffering. But like most domestic work, assisting women with disabilities is seldom valued, appreciated, or seen as important. Sometimes a helper feels that even the disabled woman herself takes the assistance for granted!

Women as caregivers

a woman speaking.
There’s too much to do. As soon as I send the children to school, I must give Mary a bath. And then I have to wash our clothes and cook a meal. When will I have time to plant the cassava? I never finish everything.
Most often, women and girls assist family members who are sick or have a disability. And they do this while they continue to do their other work at home and in the community. For many women, their daily work begins before dawn and is not done until late in the day. When women are also helping care for another person, they have even more work to do.

a girl holding one end of a long stick while a woman walks behind her holding the other end.

Children as caregivers

It is easy to forget that children—especially daughters who assist their mothers—have their own needs. Children need to spend time with other children, to learn and to play.

Instead of always relying on their daughters, mothers with disabilities can also get help from other adults. If the mother can explain to everyone the help she needs, perhaps the entire family can work together as a team to assist her.

Men as caregivers

Sometimes it is the man or boy in a family who is the caregiver for a wife, sister, or mother. If so, he may need help from other women in the family, as well as the person he is assisting, to understand why life for a woman with a disability might be different than it is for a man. The differences between male and female bodies are important, but the differences in the ways men and women are raised and treated in the family and community are even more important.

Sometimes a woman with a disability can pay a personal assistant whose work helps her have more freedom and be more independent. In some communities, the government provides money for people with disabilities to hire someone to assist them with daily care or will pay family members and friends to assist them. Sometimes a disabled woman gives her assistant food or a place to stay.

Although the work that assistants do, such as taking care of daily hygiene including bladder and bowel care, is very important to a person’s health, it is usually considered a low-status job and often pays very little. Many personal-care assistants say that family members sometimes want to control them and make unreasonable demands on their time, or dismiss them without explanation. And if disabled people are isolated, they may not understand how badly the attendant is being treated.

a caregiver speaking.
No one bothers to be polite to me. If only Christine would realize that I need a little time to myself during the day, and a day off from work.

Paid caregivers, like other workers, need fair wages, time off, vacations, and sick leave.

Organizations and community groups that train and provide jobs for personal assistants can:

  • help set standards for working conditions.
  • educate about ways to prevent and reduce conflicts.
  • offer training in counseling skills to better meet the emotional needs of women with disabilities.
  • teach skills for lifting, helping someone exercise, and preventing infection.