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Barbara McKee: Undue strain

More single moms care for disabled kids

Being a single mother today is difficult and demanding. But there is a demographic of single mothers that is often overlooked - mothers who have children with disabilities.
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A recent study by the University of North Carolina at Chapel Hill showed that 24.5 percent of children with disabilities live with a single mother, compared to 17 percent of children without disabilities living with single moms. This may seem like a reasonable difference, but the realities of living single with a child with disabilities are vastly different from raising the child in a two-parent home.

Depending on the type of the child's disability, single mothers have responsibilities that would fry the brains of most parents. Finding work outside the home and obtaining child care are the two top issues.

Having an employer who is aware of, and flexible with, disability issues is the first hurdle. Not many employers like for an employee to take time off at a moment's notice, even for a sick child. But disabled kids can suffer more serious complications from common colds than nondisabled children. Many times they can catch pneumonia, respiratory illnesses, allergic reactions or drug interactions with other medications.

The task of finding child care that will accommodate a child with a disability is equally difficult. If the child is in school, the mother either has to find a job with the same hours or find appropriate child care to fill in.

Caregivers trained to deal with disabled children are rare, especially in rural areas. Their pay is usually low, and there are few federal or state laws regulating them. Caregivers of children with disabilities must know intimately the child's disability or range of disabilities and have the patience and kindness needed to provide appropriate assistance. This can range from help with dressing, eating, going to the toilet and exercising to giving medications or administering complex medical treatments.

But the real question is: Why are there so many single mothers of disabled kids? Did the spouse or partner leave because he or she couldn't handle the child's disability? Did the partner feel responsible for the disability and leave to exonerate him- or herself from guilt? Did having a child with a disability make the partner angry? Embarrassed? Maybe he or she had to split in order to receive entitlement benefits, because the couple couldn't otherwise qualify and couldn't afford the expenses.

Avis Jones-DeWeever, director of poverty, education and social justice programs at the Institute for Women's Policy Research in Washington, D.C. gave this explanation: "Most probably, it's simply the cultural norms and a combination of what we as women tend to do."

I can't accept that explanation. It's too simple to say that women's abilities just lend themselves to caring for a disabled child. We need to find out why single women are at the top of the list and how they got there. Only then can assistance programs adjust their criteria to help the whole family - not only the disabled child.

McKee, a wheelchair user, is a freelance writer and producer. You can e-mail her at chairgrrl@chairgrrl.com.