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Family Life

Challenging the Limits

Parenting is the most profound commitment you’ll make.

By Sujata Dey

Claire Mehta’s seven-year-old son, Arthur, is crying.

"He was making fun of me," he weeps.

Mehta calms him and promises that Mommy will phone his friend to find out what is wrong. For now, Arthur is comforted, and continues to play his video game.

It is a typical parent-child scene. While Claire Mehta and her oldest son, Cyrus, both have disabilities, not much else is different in their house in suburban Ottawa.

Mehta is a civil servant, a lawyer working with the Department of Indian Affairs and Northern Development. She uses a power wheelchair due to a physical disability. Her nine-year-old son, Cyrus, has epilepsy and Tourette syndrome. Mehta works mostly from her office at home.

Her house is decorated by East Indian prints and bright paintings done by her husband, Ardeshir Mehta. A student helper, who comes in for a few hours, waters the many plants throughout the house.

Claire Mehta remembers the times when her husband’s family wouldn’t accept their marriage because she has a disability. For a while, there was an uncomfortable silence between the two families.

"My husband’s relatives who are alive are all older. Some of them in India were opposed to it. Once we were married and our oldest Cyrus, was born, everything was okay. Now they have two Mehta boys, which is what they wanted."

For Mehta, the decision to have a child who would bring the families together was not made lightly.

"I think you have to think, before you have children, that you really want children, because it is the most profound commitment you’ll make. It affects your life in so many ways."

Mehta says that parenting is both rewarding and challenging, whether there is a disability or not.

"You have to go into parenting with a sense of confidence. Parenting challenges all of your limits, physically and emotionally. If you are not a confident person, then you are going to be in trouble. You have to believe you can parent without causing trouble to the lives of your children."

But having a disability meant not only that Mehta had to be confident in her skills as a parent, but also that she had to buck comments from people who felt that she could not be a mother because of her disability -- comments she was glad to ignore.

"I did meet people who were upset. Some of these people said things to me; others didn’t. My husband and I had to make the decision. And it was not made on the spur of the moment."

A specialist told Mehta that she was irresponsible to get pregnant and have the child in the first place.

Other people felt that she was going to have to leave most of the looking after of the kids to her husband, and that she wouldn’t be an equal partner -- all things that Mehta has clearly disproved.

Some comments were cutting, but Mehta says most people with disabilities are discouraged in much more subtle ways.

"It’s the attitude that a woman in a wheelchair will never get married. Being isolated, many people with disabilities are unable to marshal the kind of building blocks you need to start a family: a really committed partner, a fairly secure income source, and a home or apartment. If people with disabilities don’t have an education, how do they get jobs? Or, if they don’t have transportation, how are they going to get to work?
These basic building blocks can be denied to people with disabilities if they are systematically isolated."

While Mehta could not do some of the physical work, she got help from friends and students. And she says she plans activities so that her children can burn off some of their physical energy. For her, being involved in her children’s life was important.

Many of the aids that she used weren’t available when she started out as a parent. The Rehabilitation Centre took on the challenge of designing children’s furniture adapted for someone using a wheelchair. The designs were made from scratch.

"There wasn’t anything out there. None of it cost us. They saw it as an opportunity to get experience to help other people who have disabilities.

"The equipment has been to several families since our family used them."

Normally, a high rail on a crib means someone has to lift the child over it. On Mehta’s children’s crib, there was a sliding door on one side which could be latched for security. A regular highchair sits on legs that would get in the way of a wheelchair approaching it. Mehta’s highchair was attached to the table so that she could approach it without hitting the legs. As well, she had a special stroller that could be attached to her wheelchair. This, Mehta says, always caused a few inquisitive looks when she walked down the street.

Mehta says that she has gotten used to the looks and attitudes and doesn’t notice them anymore. But having a disability herself has given her a fresh outlook on raising her own child with a disability.

"My overall philosophy, if you’re parenting a child with a disability, is to give them every opportunity that you would have given any other child. Now, that’s not the same thing as making them do the same things, because a child may not physically or mentally be able to do the same
things. But it means [giving them the same opportunity to be] part of the family and the community. Not to build a little world around them, because when they grow up that world will never be enough. But to make them feel that they fit in to that larger world."

Mehta says that her parenting style cannot be characterized as overprotective, even with a child with a disability. She believes not in smothering or catering to the children but in allowing them to grow independently.

"Both of us are open-minded. We are more tolerant because of that. Not only tolerant of behaviour, but of the things that our children are exposed to.

"My recollection of people around me was that they would set limits for their children that were based on an authoritative model. I had the idea we would advise the children, not tell them what to do. For example, my son wanted more Smarties, and I told him he would get sick. But he ate them anyway, and he got sick. He has never asked for one since. He knows it’s ’no’ for a reason, and if he doesn’t listen, he faces the consequences. He knows if your parents give you advice and you don’t follow it, then you have to face the consequences."

When her children grow up, Mehta wants to have an open relationship where they can tell her anything.

"I had friends who had significant problems which they didn’t tell to their parents because they thought their parents would get angry. I hope my children feel they could tell us anything, whether we agree or disagree with it."

Mehta says her parenting approach didn’t come from a book or a guide, but from her observations of her own parents. She says she is fortunate that she and her husband have similar ways of dealing with their children.

But what she has changed is her approach to her son’s disability. When Cyrus started school, Mehta was set on having him in an integrated school with all the other kids. Her son has behaviour problems due to his disability.

"I wanted to have him in an integrated classroom because it had helped me with my disability. I was an advocate for integration and I refused to accept schools without integration."

But after recurring problems, Mehta decided to put her son in the separate program. She says that most of his problems went away immediately.

"It’s the best of both worlds. He goes to an integrated daycare in the morning, and a non- integrated school for the rest of the day.

"I had to keep an open mind. Even though integration is good, it may not be the answer for every child who has a disability."

She says that her son Cyrus is proud and has always been very popular.

"He has a lot of friends. Everyone wants to play with him. He’s lucky that way."

(Sujata Dey is a freelance journalist living in Ottawa. She is also co-coordinator of the Carleton
Disability Awareness Centre.)