Born in Laos in 1974, Nair contracted polio when she was a year old because there was no vaccine available. She uses a brace and canes and because of scoliosis, she is very short in stature - standing at just four feet, three inches. She has raised her daughters, 14 and 12, as a single parent, though she says, “I didn’t expect to raise them all by myself.”

In 1979 when Nair was a young girl, her entire family, including five brothers and two sisters, escaped from Laos after the country’s civil war by swimming across the river to Thailand. “They gave the younger children sleeping pills and carried them along,” Nair says, “and we stayed in [an IDP] camp for a year until we got a visa for America.“ Nair’s family eventually settled in the Laotian community of Wichita, Kansas.

Formerly an officer in the Laotian army, Nair says that her father was abusive. Once in America, her mother left him and took the family to live with a cousin. Eventually her mother returned to Laos, returning only once to Wichita.

Growing up, Nair’s mother and siblings were ashamed of her disability. She thinks that this was part of a cultural bias that included her mother’s conviction that she would never marry. “[But] I am more Americanized than anybody else,” Nair claims. “I am more open-minded.” Nair’s mother never acknowledged her daughter’s pregnancy.

“Sometimes people disapprove of my having children - they think that I don’t deserve them.” According to many other women with disabilities, this prejudice is not uncommon. Many tell of one or both parents’ disapproval of their choice to have children.

Nair worked hard in school and got scholarships to the University of Wichita where she met her children’s father. Though she wanted to finish her degree, motherhood held many challenges.

“I tried to go to classes when I was pregnant with my second daughter, but I didn’t have anyone to watch the baby so I took her to class with me,” explains Nair, “but they told me I couldn’t bring the child.” Though her common law husband was “ a little bit helpful for the first year,” he was off working and training for the military. Nair left him just before her second daughter’s first birthday. She now receives Disability Social Security Insurance (DSSI) and sporadic child support.

Nair has experienced many of the stereotypes imposed on mothers with disabilities. She has felt that others see her as an unfit mother and irresponsible for having children. “They stare and can’t believe I had these kids,” she says. She also knows that some people were afraid that she would not be able to keep her active children safe or adequately disciplined. Nair says she managed to care for her young children by keeping to a strict regimen. “Everything was on schedule - when they slept and when they got up and when they ate.”

“If they misbehaved,” Nair says, “I just talked to them one-on-one.” Her oldest daughter, “the quiet one,” responded very well but even the youngest who is more mischievous and outgoing, responded to her method.

Prejudice about mothers with disabilities is not only cultural but can become rooted in public policy. Based on ignorance about the real lives of disabled parents, many of America’s assistive programs are structured to only deal with extremes.

“I called social services and the Independent Women’s Center in Wichita when I was pregnant with my second child. I asked if they could send somebody to come and help me out [with childcare or household chores]. The man [who took the call] told me they could not - that they could only deal with people who aren’t able to care for themselves.”

Ironically, Nair was not disabled enough to get the social services that could help her be a better mother. And, as the availability of such services varies regionally, in some states, including Kansas, childcare is excluded from the personal care assistance available to adults who qualify as disabled.

Even the medical establishment does not know enough about the health or life of mothers with disabilities to provide appropriate care. In fact, according to a 1992 report by the Connecticut Department of Public Health, many women with disabilities have been physically injured during gynecological examinations or procedures due to the healthcare practitioner’s lack of experience and knowledge. Despite the fact that there are eight million parents with disabilities in the United States - a higher percentage of them women - obstetricians know very little about the connection between specific disabilities and reproductive care.

When Nair went to the doctor when she was pregnant, she was not given any encouragement, support or information. “The internist didn’t know what was going to happen. She told me I had a high risk for a miscarriage and she didn’t know if the baby would be deformed or not.”

Fortunately both of Nair’s pregnancies were quite normal, though she was in a wheelchair in the final months “because I fell so many times. It was just unbelievable.” She had emergency c-sections for both deliveries because the doctor was not sure of how her disability might affect the delivery.

Life was most difficult when her children were toddlers.

“I didn’t go out much because I didn’t have the strength to push the stroller, which had a car seat attached for the youngest,” Nair recalls. “I just took it one day at a time. My hardest time was when I was pregnant with my second daughter. I didn’t have a car - all I had was a three-wheel scooter. The grocery store was a mile or two away. I had to strap my oldest daughter onto my scooter using a belt so she wouldn’t fall off. And I had to stand.”

As the children got older, Nair’s life became easier. Her daughters were able to take on some tasks and share in the housework. Nair says, “I’m teaching them to be independent. They have different jobs.”

Now the three of them go grocery shopping together. “There’s a van that picks up people with disabilities, but it gets costly with three people, so we use the city bus. Sometimes we have to wait out in the cold and stand there for an hour. We have to fill up our backpack on wheels and make several trips.”

Some health professionals have questioned whether disabled parents ask their children to assume too much responsibility in the home. Particularly in Britain in the nineties, they argued that children could become victims of “parenting the parent” and in some cases, social services intervened and threatened to remove children from their homes. Thankfully, this attitude has gradually changed and now it is recognized that children can actually gain from these helping roles.

Nair thinks that her daughters are better people because of living with a disabled mother, and not just because of the maturity they’ve gained from their responsibilities.

“As they were growing, they didn’t notice my disability at all. They didn’t see me as any different from anybody else.” In school, if a friend teased them about Nair’s diminutive stature or called her a midget, “it really didn’t bother them,” she says. “They just tried to educate the child.”

“My daughters are very caring and loving to other kids and people,” she says. Like any mother, she wants them “to be the best they can be. And I want them not to judge other people.”

Nair volunteers at their school, going to their classes to meet the other children and has tutored some students who need special help with study skills. She uses it as an opportunity to talk to the students about disability. “I explain how I got my disability and what I can and cannot do, but mostly about what I can do!”

Nair admits, “it is tough to raise children as a disabled mother…very tough - but it is rewarding.” The bond she has with her daughters, she says, “is just amazing.”

Mary's article is part of our focus on disability issues. - Ed.

Photograph by flickr user jmhullot used under Creative Commons licenses.

About the Author
Mary Grimley Mason has been writing about disability issues since her retirement from Emmanuel College in Boston where she taught English and American literature and Women’s Studies. She received her doctorate from Harvard University and is presently a Resident Scholar at Brandeis University’s Women’s Studies Research Center. Her interests include women’s autobiography, personal narratives and disability studies. She has been a Fellow at the Radcliffe Institute and Wellesley’s Center for Research on Women and an artist in residence at Virginia Center for the Arts. She is currently writing a book on mothers with disabilities and hopes her work will raise awareness about disability, particularly as it is part of the ongoing struggle for civil rights for everyone.