Every summer for the last few years, Rhoda Olkin had looked forward to a week at Berkeley’s family camp near Yosemite. It is a special time to share with her son.
But when the child turned 10 years old, he no longer wanted to go.
“I thought he didn’t want to be seen with me because of my disability,” said Olkin, who contracted polio when she was 1 year old and now uses crutches or a scooter to get around.
“It turned out he just didn’t want to be seen with his mother,” she said. “ It was no longer cool to hang out with mom.”
Olkin says she is one of 10 million parents nationwide with a disability. She has devoted much of her professional life to increasing awareness and knowledge of disabilities. Olkin is a professor of clinical psychology at the California School of Professional Psychology at Alameda and a staff member at Through the Looking Glass, a Berkeley-based nonprofit organization that provides direct services, information and referral to families in which one or more members have a disability,
She recently wrote a book: “What Psychotherapists Should Know About Disability” (Guilford Publications, Inc., 2001). Now, she is spearheading a survey to learn more about the experiences of disabled parents raising teenagers.
“Parenting is tough work,” said 48 year-old Olkin, a single mother who shares custody of her 11-year-old daughter and 14-year-old son with her former spouse. “But parents with disabilities feel that they have to be better than other parents just to measure up.”
Paul Preston, co-director of the National Resource Center for Parents with Disabilities at Through the Looking Glass, agreed and said parents with disabilities have special concerns.
“A parent with a disability has the added issue of access to services,” Preston said. “If a school building is not wheelchair accessible, a parent can’t meet with her child’s teacher. If the school doesn’t provide an interpreter, a deaf parent can’t communicate.”
At a recent back-to-school night, Olkin was appalled that the classrooms at her daughter’s middle school were not wheelchair accessible.
“My daughter is at that age where she wants to be exactly like everyone else,” Olkin said. “So, I had a real internal struggle. What do I teach her? Do I stand up for myself? Or do I teach her to fit in? I don’t want her to be stigmatized by my disability.”
In the end, Olkin wrote a letter to the school principal, and her daughter supported the decision.
“I was really pleased that at the age of 11 she had a sense of justice,” Olkin said.
“My kids see the bigger picture of things.”
Olkin also said disabled parents feel guilty about how their condition affects their children.
“When my son turned 14, I asked him to take out the garbage,” said Olkin. “ I worried that I was asking him because it was something I couldn’t do. I forgot that if I could do it, I’d ask him anyway.”
According to Olkin, the three-year survey (conducted by Through the Looking Glass and funded exclusively through a grant from the U.S. Department of Education) is the first study to focus on disabled parents who have teenagers.
“We wanted to find out what concerns parents and teenagers have so that we can develop programs to address these needs,” said Preston.
“We wanted to hear their voices,” added Olkin, “and how they’ve incorporated disability into their lifestyles.”
Olkin said the goal is to survey 300 to 500 parents and teenagers nationwide by September 2002. So far, the agency has surveyed between 60 and 80. And the response has been positive, she said.
“People have been marvelous,” said Olkin. “No one asks the disabled about their experiences, but they want to talk about it. During the surveys, people talk to us longer than we thought they would.”
Olkin, who trains therapists about disability issues, said that little information existed about disabled parenting when she was pregnant with her first child.
“The only report I could find on a mother with polio focused on whether the mom had a healthy baby,” Olkin said. “There was nothing out there that could tell me about how pregnancy or childbirth would affect me.”
After her son was born, Olkin, who used crutches since the age of 16, decided she needed a scooter.
“I applied to the insurance company and they asked me all kinds of questions,” Olkin said. “Whether I could garden. Whether I could grocery shop. I could do all those things, but I couldn’t carry my child.”
The insurance company denied Olkin’s request because as she explained, parenting was not considered an “activity of daily living.” But Olkin was relentless.
“Three months later, I applied again and told them that I couldn’t grocery shop,” Olkin said. “And I got my scooter.”
Olkin said one of her anxieties during those early years was the fear that her children would be taken away from her.
“I was going to my car after grocery shopping and I had my 5-month old son, my crutches and my wagon,” she said, recounting a memory that still frightens her today. “A woman came up to me and asked if she could help. But instead of taking my crutches or helping me with my groceries, she took my baby out of my arms. I panicked. I really felt physically vulnerable.”
Olkin’s fear is not ungrounded.
According to a dissertation by Lisa Cohen, a California School of Professional Psychology at Alameda graduate and former student of Olkin’s, 10 to 15 percent of disabled parents surveyed had experienced active interference in their parenting, including pressure to have an abortion, tubiligation or excessive involvement by Child Protective Services.
The fear of losing one’s children can persist even after the early childhood years, said Olkin. In divorce proceedings, Olkin said courts look favorably on able-bodied parents and that Through the Looking Glass receives four phone calls a week from disabled parents seeking assistance with custody issues.
Though Olkin eventually got over her fears, she has faced many physical challenges since. One of the hardest tasks was getting her children into their car seats when they were younger.
“Someone should really invent a car seat that is easy to get in,” she said. “As soon as my kids were old enough to crawl, I taught them how to crawl into those seats.”
Although Olkin’s physical limitations made it difficult for her to keep up with her children’s energy levels, Olkin said there were benefits to her disability.
“We developed our own pace for doing things,” she said. “We did a lot of projects at the table that focused on sharing and talking. Every year, for instance, we make Hanukkah decorations together. And because of that, we see a lot of our community projects around the house.”
Olkin also said teenagers of disabled parents often display more tolerance toward others and have higher levels of empathy.
“When we’re out on the street, my children are always pointing and saying there’s a curb cut here or there,” said Olkin. “They have different eyes without even knowing it. My son is particularly attuned to what’s going on with other people. He’ll notice when I’m using crutches in the house, which is something I don’t normally do, and acknowledge that I’m in more pain.”
Olkin also thinks having a disabled parent can make children better problem solvers.
“If there’s something my children really want to do but that I don’t have the energy for, they’ll figure out a way,” she said. “ If they want to go the mall, they’ll say you go to one store and we’ll go to the others.”
But Olkin still has concerns about how her disability affects her children.
“I worry about whether the kids feel like they need to protect me, or if they keep things from me because they think it will hurt my feelings,” said Olkin. “It’s not uncommon for children with disabilities to have parents who protect them. So it’s easy to think our kids are doing the same thing.”
Olkin said the survey aims to examine unspoken issues like this as well as other challenges and benefits disabled parents and their teenagers face.
The survey, conducted in writing or on the phone, can last anywhere from 10 minutes to an hour depending on format, disability and whether the respondent is a parent or teen. Teenagers are paid $5 for completing the survey. An online version will be available in three to four weeks.
“The teenage years are difficult,” Olkin said, stressing the importance of having a support network of other disabled parents to lean on. “Teens are asserting their independence and testing limits.”
But Olkin reminds disabled parents to maintain their perspective on the situation.
“There are so many struggles that you have with your teens,” she said. “Many of them have nothing to do with the disability.”
For more information about the survey contact Nancy Freed at Through the Looking Glass: 848-1112 ext. 174 or (800) 644-2666; TTY: (800)
804-1616; or firstname.lastname@example.org.