Mother of disabled woman propelled by love to make daughter's life meaningful
May 8, 2004
TORONTO (CP) - No matter how old you get I'll always be your mother, and I'll always worry about you.
It's a familiar sentiment, shared by women from all walks of life who have watched their children grow into adulthood and leave the family nest.
For the mothers of disabled children there's an added concern - will their kids be able to lead fulfilling lives in a world built for the able-bodied?
"Rebecca requires a considerable amount of care," said Susan Beayni of her daughter, 21, who cannot speak, has an intellectual disability and uses a wheelchair. "That requires a fair bit of energy on our part, but nothing compared to the energy that's required to try to teach the world a different way of thinking."
Ensuring that Rebecca leads a productive life - one in which she both contributes to, and benefits from, the community in which she lives - has been a lifelong pursuit for Beayni. From the moment her infant daughter was diagnosed with a disability, she knew it wasn't going to be easy.
"All of the sudden you no longer get the reaction 'oh, congratulations, it's wonderful, you have a lovely new baby,"' said the Toronto resident. "People don't know whether to mourn, or say I'm sorry, so they don't say anything. You miss out on all the incredible joys of just having a new baby."
All the expectations and dreams that accompany that birth - will he make quarterback in his senior year? Will she favour the ballet, science, or both? - seem to evaporate as the medical profession and those around you "put limitations on the possibility for your child."
"They don't even know your child," said Beayni, who was determined that Rebecca would go to her local school, have able-bodied friends and lead a productive life.
"Nobody really expects them to be able to have a real life. They can't even envision it," she said. "The only reason it happened for Rebecca was because we said, 'why not?"'
Watching Beayni deliver that message at a recent disability conference in Toronto, one can't help be moved by the seemingly boundless energy and enthusiasm she exudes while telling her daughter's story.
But Beayni, like any mother, isn't immune from exhaustion. The degree of planning that her daughter's life requires makes for little spontaneity in the lives of the Beayni family, which includes dad Simon and 18-year-old sister Nicole. The constant stream of volunteers that comes into the family home to support Rebecca means their life is essentially an open book.
"Love for our daughter" is the driving force that helps the family overcome those hurdles, said Beayni, who was off to Gananoque, Ont., with Rebecca after the Toronto conference to address a meeting of Family Alliance Ontario.
"She's an amazing woman. An inspiration, I know, for Rebecca's life and anyone who comes in contact with her," Anna Mongillo, a close friend of Rebecca's, said of Beayni. "She's committed to seeing Rebecca grow and achieve all her dreams, but she has that same goal for other people with disabilities as well."
The two girls have known each other since Rebecca invited Anna to dance with her in a church group some five years ago. Mongillo, 23, is just one of the many able-bodied friends that help make Rebecca's life a fulfilling one.
"Typically, in our society, someone like Rebecca (after completing high school) would go into a day program where she basically wouldn't do anything," said Beayni. "It would be custodial care all day long."
Although Rebecca can't speak, those who know her well can tell what makes her happy through her facial expressions. To that end, Beayni lets her daughter make her own choices. That has led to volunteer work at the Royal Ontario Museum and at shelters for troubled youth.
Given the barriers in society for the disabled, Beayni has to work hard to make Rebecca's dreams possible.
"Mothers are essential to this whole thing," said Helen Healy of the Bloorview MacMillan Children's Centre in Toronto. "I think bringing up any child would present a challenge, but if you have a child that has special needs... you have the challenge of supporting them."
That means often fighting advocacy battles and putting systems in place so the child can develop and learn. And planning for 'what happens when we're no longer here' becomes crucial for parents of disabled children.
Like any other family, the Beaynis are planning for the future. Simon, a builder, is hard at work on a new home with a separate, three-bedroom apartment for Rebecca. It will give her a degree of independence, but her parents will still be close at hand.
And over the past 12 years, Beayni has worked tirelessly to put together what she calls a circle of support for Rebecca. The type of government funding required for her daughter to pursue her ambitions just doesn't exist, so friends and volunteers from the community are invited to become part of Rebecca's life. They work, play, and socialize with her, each giving their time freely.
"These are not paid service providers, these are people in the community who have become her friends," said Beayni. Those who become involved in Rebecca's life quickly learn that it's not a one-sided relationship.
"Individuals, even though they may be totally dependant, have gifts to share," she said. "It's not just about Rebecca, it's about building better communities."