Life on Wheels (71 page)

Progestagen injections provide protection for 90 days with a very high success rate. Progestin subdermal implants are also highly effective and can remain in place for up to five years.

There is disagreement on the wisdom of using an IUD. Its placement and removal can cause autonomic dysreflexia, typically an issue only for women with spinal cord lesions above the sixth thoracic vertebra. Women who use anticoagulants should not use an IUD. Excessive blood flow could occur during menstruation. Talk with your gynecologist for more information.

Diaphragms and vaginal condoms are effective about 90% of the time. A diaphragm also needs to be checked carefully for position, particularly for women who press on their bladder to assist in manual voiding. Extended wearing of a diaphragm also increases risk of infection. Women who used a diaphragm prior to injury should be refitted to account for weight change and reduced muscle tone.

A vaginal condom requires the use of a spermicidal foam or jelly. People who use a Foley catheter and leave the catheter in place during sex need to take care that the condom is not torn by the catheter.

Sponges and caps are moderately effective and available without a prescription. Like the IUD, diaphragm, and condom, they require sufficient hand function to insert and position. Sponges are more effective in women who have not already given birth.

Natural methods of birth control involving timing and abstinence are statistically the most unreliable. Some women opt for sterilization, having already had their children or knowing they choose not to be mothers. This is very effective but entails some surgical risk.

Can disabled women conceive and have babies? Yes, in most cases.

Can disabled men make babies? Increasingly the answer is, “Yes.”

Until recently, not many paraplegic men were producing children. But now men with spinal cord lesions are increasingly able to make babies. The question of childbearing seems to come up more with regard to spinal cord impairment, thus its emphasis in the following discussion.

The Baylor College of Medicine study on women with disabilities found that the medical profession is not serving women well with regard to pregnancy. Providers and the women themselves often operate under the false belief that such women should avoid pregnancy. Recent 10-year studies have found that women with SCIs are giving birth more often, yet:

This paraplegic woman reports being given incorrect medical advice:

Women in the Baylor study reported having trouble finding obstetricians or midwives willing to assist them in what were considered highrisk pregnancies. The Baylor report says that their own study and previous findings confirm:

Physicians and midwives do need to understand issues faced by women with disabilities, including autonomic dysreflexia, urinary tract infections, skin breakdown, spasticity, and the effect on a fetus of medications they might be using.

Before you start trying to have a child, address health and emotional considerations. You’ll probably wonder what it’s like to be a parent with a disability. If you are a woman, you’ll want to consider the consequences on your own health of becoming pregnant.

If you are disabled by a genetic condition, you will want to fully understand the odds and consequences of passing such a condition on to a child. This certainly does not mean you should choose not to bear children if there is a chance of passing on a disability. People with disabilities have historically been told that they should not be parents—much less be sexually active—because it would be wrong to bear a child with a disability. This attitude is widely viewed by people with disabilities as discriminatory. You have the right to bear children, and such testing for genetically passed disability is available to you for your own information. The decision is yours.

People with disabilities are raising children with great success, adapting creatively to childrearing just as they do to their mobility needs. Children are highly resilient by their nature and naturally adapt to your parenting style.

Slings, seat belts, and Velcro come in very handy for securing a child in your lap. Adjustable-height tables make it easy to lift your child from a lower position, then raise the child to a higher level for changing diapers and so on. For parents with limited hand use, buttons and snaps on children’s clothing can be replaced with Velcro, and loops can be placed on shoes to help pull them on. A modest degree of family support or paid help might be necessary during early stages when physical demands are greater.

There are some potentially challenging cultural aspects to parenting with a disability. Once your child is in school, relationships with other parents and the community are a source of important support, information, and local advocacy. But other parents might not support your need for access to their home, or schools might plan events you cannot attend for lack of access. Some people might even imagine that the child takes care of the parent with a disability, an assumption that is insulting to parents with a disability, who work as hard as others on behalf of their children.

Through the Looking Glass is a group in Oakland, California, operating on a fiveyear grant from the National Resource Center for Parents with Disabilities. At an October 1997 conference, a task force met to review a recent national survey of 1,200 parents with disabilities conducted by Berkeley Planning Associates in Berkeley, California.
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Here are some of the results:

Thirty-six percent of disabled parents reported that their medical providers’ lack of disability expertise caused problems in prenatal and birthing services.

Thirty-one percent reported medical providers’ attitudes caused barriers.

Disabled parents reported needing assistance in recreation with their children (43%), traveling outside the home with their children (40%), chasing or retrieving children (39%), and lifting or carrying children (33%).

Transportation affected more aspects of parenting with a disability than any other issue; 79% reported transportation as a problem that interfered with or prevented routine as well as critical parent-child activities.

Cost was the most frequently identified barrier to childcare (30%), followed by lack of transportation (20%).

Forty-eight percent reported that adaptive parenting equipment was too expensive; 32% reported that adaptive equipment was unavailable or not yet designed.