All in the Family

 

Parenting with a Disability

When Deborah Kent Stein gave birth to her daughter, the nurses on the maternity floor didn’t want to wheel the baby into her room. “You won’t see the crib!” they protested. “You might bump into it!” Deborah, who is blind, was flabbergasted. “Well,” she countered, “what do you think will happen when we go home? Anyway, I don’t expect her to be quiet!”

Kent Stein spoke at the Second International Conference on Parents with Disabilities, held in Oakland, California, from May 2 to 4. The conference was hosted by the U.S. organization Through the Looking Glass (TLG), which provides services and supports to families with disabilities and is also the U.S. National Resource Center (NRC) for Parents with Disabilities.

The event brought together a group of diverse delegates. Everyone was either a parent with a disability or a professional in a related field; most were both. We were there to learn about ourselves and the populations we work with, to present research, to plot policy and to share solutions to challenges.

But we were also there to learn about and teach each other. For parents with disabilities, opportunities for networking are often rare to non-existent. To meet other parents who can demonstrate a method of carrying a baby in a wheelchair, who can suggest ways to keep tabs on kids at the playground when you’re blind, who can give advice about communicating with your hearing kids’ school when you’re deaf, was heartening.

Most uplifting of all was meeting other people who understand and accept what it’s like to be a parent with a disability, with all the accompanying joys and frustrations. There was no judgment, no suggestion that anyone present was less of a parent because he or she had a disability. Instead there was support, and inspiration, and motivation to move forward in the push for social acceptance and change.

“Our children and families are in two worlds,” said Paul Preston, Co-Director of TLG’s National Resource Center and author of “Mother Father Deaf,” as he delivered the opening address at the conference. Most families only exist in the world that assumes that talking, walking and seeing are essential to well-being. Our families are different – and Preston asserted that “we should be proud of those differences, not hide them.”

My husband and I know about those differences. We both work in the disability field, and we are raising a young daughter. My husband is quadriplegic from a spinal cord injury (C5/6), and in the three years since we became parents we have dealt with a host of issues that would be foreign to many of our non-disabled friends.

One of the biggest issues, of course, is social acceptance as parents. Even those of us without disabilities observe that we are constantly judged in our parenting skills. When my daughter was a baby, a total stranger walked up to me on a crisp autumn day, grasped my daughter’s bare hands and said, “Baby, where are your mittens?” And when you have a disability, “your competence is challenged on many, many levels,” said Kent Stein. She spoke of the constant effort to be seen as a capable parent by the rest of the world. “It all comes down to exclusion.”

Lisa Cohen, who completed a Ph.D. study on parents with disabilities, met a blind mother who reported that when she dressed her son, she felt compelled to make an extra effort to make him “look nice.” She didn’t want other people to say, “He can’t help it – his mother can’t see.”

Corbett O’Toole, as well, feels the pressure to show that she’s competent. After she adopted her daughter, O’Toole, who uses a wheelchair, experienced a “powerful feeling” that she could never ask for help or show a need for support. She never felt free to complain openly about the lack of sleep and other challenges that every parent faces. Always in the back of her mind was the fear she would lose custody of her little girl. Now that she is “past that,” she feels that being out in public with her now nine-year-old daughter is a way of “challenging what the public believes about who can be a parent.”

Kent Stein often used humour with her daughter to offset the strange reactions they got from others. Once, as she was bringing her daughter home from school and a few drops of rain started to fall, a crossing guard literally chased them across the street, trying to thrust his umbrella into her hand. Kent Stein had to work to convince him it was unnecessary: she would be home in a couple of minutes, and the guard would be working in the rain for a while. Later, Kent Stein’s baffled daughter asked her mom why the guard wanted so badly to give them his umbrella. Kent Stein’s answer: “Because he thinks rain makes blind people melt.”

Thereafter, “melt” became their code word whenever strangers questioned Kent Stein’s competence.

Rhoda Olkin, a polio survivor, could also find the humour in these situations. Not one to keep quiet when a shop clerk treated her discourteously, she would try to turn it into a teaching moment for her son, so he would learn the importance of speaking up for his rights. But her son, who was all too familiar with his mother’s assertive manner, would rapidly make his way to the other end of the store and “behave as though he’d never seen me before in his life,” Olkin laughed. “My son voted with his feet!”

Teaching moments are important, however, as our children develop their own understanding of disability. This understanding can be so strongly influenced by society that it is critical that we offer them a balanced perspective.

Stephen Dias described the “internalized oppression” that society teaches people with disabilities – any bodies that deviate from the norm are considered a personal tragedy and an individual problem, and the self-image of many people with disabilities becomes influenced by these negative messages. We must, he said, demonstrate to our children a “social oppression” perspective instead. When Dias is at a playground that is not accessible, his first reaction is to feel frustrated that he can’t get out of his wheelchair. But a more appropriate reaction, he explained, is to feel outraged that the built environment is not accessible to all people. And this is what we need to show our children.

In Cohen’s study, she noted that children of parents with disabilities, compared to their peers, are significantly younger when their families first explain societal ignorance to them. These families also have more open discussions about societal values, and are more adept at discussing feelings.

Not only do these open discussions help shape our children’s understanding of disability, Cohen said, but they can also alleviate some underlying anxieties. A child may be wondering, “Will I be disabled, too?” or, “Is mommy going to die?” Talking about the disability eliminates any misconceptions that young children may have.

Beyond helping our children to understand disability, we do need to work on improving the social attitudes themselves. Michele Wates, a writer, researcher and mother with a disability, advocates for a shift away from the “what’s wrong with the parent?” approach in social services – that is, the practice of questioning a parent’s competence first and never even getting to the issue of what supports should be provided. In a child-supported village, she said, “the welfare of the child should be the exercise.” We need to design systems that meet these criteria, she noted, or “some parents will be left out.”

Other conference participants suggested an increased effort to put parenting on the agenda of disability conferences, and to promote disability issues to mainstream parenting organizations. We must also foster and encourage the development of parenting networks, invaluable forums for sharing information and ideas.

Whether parents are blind or deaf, are quadriplegic or have cognitive disabilities, all have the same goal: to raise a happy, healthy child. And all have the same hope: that the legacy their disability leaves with their child is a positive one. Rhoda Olkin said she is hoping that as her son grows older and more independent he will still feel comfortable with her disability. She worries, “Will he need to separate from disability in order to separate from me?”

Kent Stein admitted that as her daughter got older, she did seem to feel a bit awkward about having a mom who was blind. But by the time she hit high school, it was pretty cool: She enjoyed surprising friends with it when they came to their house. “She liked the shock value,” Kent Stein laughed.

Denise Jacobson and her husband both have physical disabilities. Their son, David, is a teenager. On a recent Caribbean cruise, David would disappear for hours at a time with the other teenagers on the ship. Many typical youth would not want to be singled out by their parents when they’re with a group of kids. Yet, Denise said, when they found him by the pool, he did not hesitate to call out, “Hi, Mom, hi, Dad” – while surrounded by girls.

“And I guess that proves we’re doing okay,” concluded Denise with a smile.

(Lisa Bendall is the Managing Editor of ABILITIES.)

SMALL STRATEGIES THAT MAKE A BIG DIFFERENCE

How do you perform the practical tasks of parenting when you have a disability? “We are the most resourceful group of parents,” Michele Wates proclaimed at the Second International Conference on Parents with Disabilities. There is research to back up her claim: Lisa Cohen found in her study that creative thinking about problem solving is a great strength in families in which a parent has a disability.

When Deborah Kent Stein was growing up, she was never asked to babysit, knew no parents with disabilities, and grew to assume that “blind people didn’t get to be parents.” But after she got married and realized she wanted to be a parent, Kent Stein actively sought out other blind parents. She connected with two. These informal mentorships meant a great deal to her in terms of both emotional support and helping her pick up some useful practical tips. In hindsight, she believes that part of her motivation for finding other blind parents was to put her sighted husband’s mind at ease. She didn’t want him worrying about how she would perform parenting tasks, if at all.

One of Kent Stein’s tried-and-true practices was to string bells on her daughter’s shoes so she could keep track of her. Her sighted mom friends liked the idea so much, they decided to try it with their own children. Deborah also had Braille put on her daughter’s picture books so she could read to her.

John de Benedetti has two daughters, ages five and three. He is also blind. Before his children were born, he attended a National Federation for the Blind meeting with a mission: he frantically sought out other parents, looking for practical tips. “How am I going to know if they’re sticking their tongue in an electrical outlet or playing in a garbage can?” he recalled wondering.

Even now, he feels his parenting is still a “work in progress” because his daughters are so young. But he has already learned a great deal. One lesson was to forget about the stroller: it’s tricky with a white cane, he said, “especially when you have dry cleaning or groceries in the other hand.” He discovered that a baby carrier and, later, a backpack carrier were ideal because he could manage his cane and know that his child was safe.

Some of de Benedetti’s strategies have involved lifestyle choices – he made a conscious decision not to move from the city to the suburbs, so he could take advantage of public transportation, and could even walk to many shops and services.

De Benedetti also used the bells-on-shoes idea, which he considered ideal for “that stealth period,” when a child has learned to be mobile but cannot yet talk – “where you know, when they’re quiet, there’s trouble.”

Many adaptations, though, are individual: Some blind parents preferred cloth diapers, because it was easier to feel wetness. Others found that when their toddlers wore disposables, it was easier to hear them moving around.

Parents with a variety of disabilities reported that getting involved in their children’s schools is something that benefits other kids and teachers as well as their own family. When Kent Stein gave a talk to her daughter’s grade one class, she said, “It turned out the teacher had the most questions!”

Bridgetta Bourne-Firl, who is deaf, used to visit her son’s class once a week to teach sign language. And every week, her child would say, “Mom, I was so embarrassed!” But when Bourne-Firl had to miss a week, he exclaimed: “Mom! Where were you? What happened? The kids missed you!”

Keeping in touch with the school is also a good way for deaf parents to bridge any cultural differences. For instance, many children of deaf parents, accustomed to communicating in sign language, need direct eye contact in order to connect with their teachers. In a large class, they might have trouble paying attention. Parents can suggest the teacher touch the child’s shoulder or make frequent eye contact in order to keep him or her on track.

School might also be an issue for parents with intellectual disabilities, who may feel frustrated by their limited ability to help with homework. But they can take a major role in searching out a tutor for their child. This is known as designating a “functional substitute” – the parent still takes responsibility for the task, but he or she does not necessarily have to carry out the task personally.

Beth Smith, who does clinical work with parents who have cognitive disabilities, also suggested finding out which schools have mentor programs or library tutoring programs – it’s nice for their children to discover they’re not the only ones who need a tutor. For school meetings, Smith suggested, invite a support person along – someone who won’t take over the discussion.

Another approach is known as “reframing.” One single mom at the conference, who is paraplegic, is often tired in the evenings. Her children are invited to come to her in bed for homework help. With books and papers spread all over the bed, suddenly it is transformed into her “office” – and the mother is actively helping her children with their work rather than passively resting.

Everyone agrees that networks among parents with disabilities are incredibly valuable, whether they are Internet based or scheduled, face-to-face meetings. For Corbett O’Toole, for example, a support network meant a safe place to ask, “How do I not drop my kid?” without fear that a social worker would swoop in to take away her child.

Kent Stein, too, knows the power of peer support. She’s active with the National Federation of the Blind’s listserv for parents. If someone posts a question about how to change diapers, she said, it elicits “loads of response.”

Added Kent Stein, “People get excited about being able to help others out.”

THE QUESTION OF PARENTIFICATION

Parentification was a hot-button issue that came up again and again at the Second International Conference on Parents with Disabilities. Are the children in our families parentified? That is, are they compelled to take on the role of parent at the expense of their own healthy development?

Most parents with disabilities admit they usually go too far in the other direction. They have to remind themselves that asking a child to pick up toys that are in the way of mommy’s wheelchair is not inappropriate – kids are supposed to learn to pick up their own toys!

“All parents expect their kids to help out,” said Deborah Kent Stein. “So why do we all feel twinges of guilt?”

When it came to household chores such as laundry, Kent Stein “worked really hard trying not to ask my daughter to do those kinds of things.” And, determined never to rely on her daughter to help her get around, she always made a point of using her white cane when they were out together. Maybe she made too much of a point: as a teenager, when her daughter suddenly realized her mother had never taught her to be a sighted guide, she asked, offended, “Don’t you trust me?”

“You’re always walking a fine line. It’s a balance,” said Denise Jacobson, a mother with cerebral palsy. She pointed out that she wants to teach her teenage son to be responsible and helpful. And yet she struggles with herself before asking him to do even the smallest task for her. “What if I want a glass of milk, and he’s in the kitchen? Do I ask him to pour it?” she said. “Well, sometimes I do, and sometimes I don’t.”

Parents with all types of disabilities noted that despite their best efforts to let their children be children, they often encounter others who assume our children have to look after mommy or daddy. When Jacobson’s son was small, he was regularly approached by strangers who told him, “You’re such a good boy to take care of your mom.” He would counter with a firm: “She takes care of me.” Even now, people still tell Jacobson her son must be a big help to her. “Well, he’s a typical 15-year-old. I can’t get him to do anything!” Jacobson laughed.

Deaf parents reported similar experiences. Lorraine Flores recalled the time she arrived at an airport, frazzled, with baggage and a three-year-old in tow, and discovered the TTY pay phone was out of order. She used a pen and paper to ask an airport staff if there was another TTY phone nearby. The woman brushed aside the paper and persisted with giving directions to Flores’ three-year-old child. Flores is still appalled at the woman’s inappropriate behaviour.

When Tammy Weiner’s daughter was nine years old, her school pulled her out of class and requested that she act as a sign-language interpreter for a visiting deaf couple. “My daughter was nine years old! They should know better than to do that,” said Weiner, dismayed.

Debbie Leung, who is blind, often reminds her children they are not there to be her gophers. And she has no problem responding to strangers who assume otherwise, like the two elderly ladies at a bus stop who patted her son’s head and said: “Isn’t it nice you look after your mom.” Debbie, of course, gave them a suitable answer. After they got home, her embarrassed son said: “Mom, you don’t have to say anything when people talk like that!” But Debbie just shrugged. “I can’t help it!” Then she added: “Maybe it’ll make them more sensitive to not prejudging people as they meet them.”

As parents with disabilities become more visible in our society, perhaps we will manage to chip away at the widespread assumption that people with disabilities are not capable of doing things independently, let alone performing the tasks of parenting.

That’s what’s happened as John de Benedetti has gotten to know his neighbour. The blind father has found that over the past few years his neighbour has become very accepting of his role as a parent. “Maybe too much!” he added, laughing – recalling that on a day not long ago, when his neighbour knew he’d be home with his children, she asked him if he could watch her two kids, as well!

ABOUT TLG

Through the Looking Glass was founded 20 years ago and is recognized across the United States as a leading organization in its field. Its many services for families with disabilities include information and referral, a parent-to-parent network, home-based parent/child intervention, support groups, publications, professional training and research. The majority of its 40 staff members have disabilities or are members of families with disabilities.

For more information:
Through the Looking Glass
2198 Sixth St., Ste. 100
Berkeley, CA
94710-2204 U.S.A.
Phone: (510) 848-1112
Fax: (510) 848-4445
E-mail: tlg@lookingglass.org
Website: www.lookingglass.org

 

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