Jim Rosin remembers that he was “busy being a teenager” when his sister Joy, born with Down Syndrome, was growing up. Jim is ten years older than Joy and, although he was immersed in his own life, he certainly must have absorbed some of the family values demonstrated by his father Ivan. Ivan always insisted that Joy be treated with respect.
Having a sister with Down Syndrome was not something that affected Jim’s younger life to a great degree. He says that he and Joy’s other sisters realized that she was different but could also see her humour and love of life. She had good days and bad days, just like the rest of the family. But Jim could tell that other people struggled to deal with Joy’s handicap and still do, although the attitudes and acceptance have come a long way since the 1960s.
Joy’s mother had passed away by this time, so her father Ivan was left to raise the family alone. Ivan became involved with the Association and served as President for a time.
Our father always made a point of having children with Down Syndrome treated as equals and to allow them the opportunity to get the most out of life.
Ivan was an advocate for integration of the handicapped into society, but not in a way that would “force” them in. He believed in allowing them to have a full life with job opportunities and to feel that they are a valuable part of society.
In 1970 Jim left the Peace area for school and work and wasn’t involved with Joy’s life during that time. But he does remember a change in the philosophy regarding the disabled. It was about this time that Ivan discontinued his involvement on the board of the Association.
When Ivan passed away, Joy’s care was turned over to Joyce and Jim. Now that Joyce lives away from Alberta, Jim has assumed the sole responsibility for Joy. It’s a lifetime commitment to ensure that the “system or the process” is working in Joy’s best interest.
Care has become more demanding because Joy’s generation was the first generation to live this long. When Joy was young, her family was told that her life expectancy was 30-35 years old. Jim believes that greater acceptance by society has allowed those with Down Syndrome to reach their full potential and that has made the difference.
The big thing now is the aging process, because they’re the first generation to live as long as they have. It’s a challenge because there is no history about how to deal with the aging and what to expect.
Jim also must consider Joy’s health in terms of her being a woman. One of the concerns the family has is how Joy would be able to cope with breast cancer. Joy’s mom and her sisters have had breast cancer and Jim hopes that the family’s experience will help if Joy ever has to face the illness. Joy is now past the age that her family members were ill with cancer, so he is hoping that she has been lucky enough to avoid it.
There will always be health issues that come up and those are going to be a struggle and not only for Jim, as Joy’s guardian, but for the whole family. He wonders how they will be able to help Joy to deal with it mentally because she will not necessarily understand what’s happening to her body.
Jim has developed a faith in the system; that the Association is doing right for the kids and allowing the disabled to achieve as much as they can in life.