Profoundly normal

IN THE EARLY 1960s, a lot of children born with Down’s Syndrome were still being institutionalised, but that wasn’t the case for my cousin David. David was always quieter than the other cousins; for me, that seemed to be the main difference. David joined in all of our games in one way or another. If he wasn’t always an active participant, he was a magnet for the younger cousins who also couldn’t play, but who did so want to hang around their older cousins.

David was easy to be around. You didn’t have to talk too much; he didn’t tease. He was a quiet oasis in a boisterous crowd, and a lot of family members were drawn to him exactly for that reason. In fact, he is still that way and continues to have a very special place in our family.

However, I think it would be wrong to give the impression that David was exactly like

other children. He wasn’t, he required a lot of care and attention, he still does, and, at 41, continues to live at home with his parents, who are now in their mid-sixties.

Furthermore, my aunt Aline and uncle Mike always gave the impression that their life

was effortless, but that certainly wasn’t the case. David, their eldest child, needed them a lot; so did their two other daughters and one son.

My aunt worked full-time as a teacher and my uncle was a business owner. Their home was impeccable and always welcoming. They were community leaders and volunteers in numerous causes; faithful to family, friends and to their church commitments. In hindsight, I can’t help wondering how they managed it all. Courage, faith, love and heroism; that’s my conclusion. They continue to be a source of inspiration to so many people, they have had happy and rich lives, but it’s important not to forget that they struggled too and that they had many obstacles to overcome.

A genetic condition

In an excellent booklet directed to parents of children born with Down’s Syndrome, the Down’s Syndrome Association of the United Kingdom points out that it is very common for new parents to feel shock, sadness or anger when they learn that their baby has Down’s Syndrome. Some may even feel guilt, thinking that they somehow brought the condition upon their child. The pamphlet walks parents through what they might expect by having a child with Down’s Syndrome.

Acknowledging feelings is deemed very important; so is connecting with other parents who have gone through similar experiences, building a support network, meeting their own needs and those of other children and obtaining enough information to help their child through the challenges of life. “Down’s Syndrome is a genetic condition (i.e. something you are born with, which is present in the baby from the moment of conception) caused by the presence of an extra chromosome. Chromosomes are tiny particles which are present in every cell in every tissue of our bodies. They carry the ‘blueprint’ for all the characteristics we inherit. This blueprint is carried in the form of a coded message in a chemical substance called DNA. There are 23 pairs of chromosomes in each cell, hence 46 altogether. One of each pair comes from the father, one from the mother.”

“In 1959, a French geneticist, Professor Jerome Lejeune, discovered that Down’s Syndrome was caused by the presence of an extra copy of chromosome 21, making 47 chromosomes in all.”

 “A ‘syndrome’ is a collection of signs or characteristics. The name ‘Down’ comes from the English doctor, John Langdon Down, who first described the syndrome in 1866... Every day in the UK, between one and two babies are born with Down’s Syndrome, which means that about one baby in 1000 has the condition.”

“People with Down’s Syndrome all have a certain degree of learning disability (mental handicap). The degree of disability varies from person to person and it is impossible to tell at birth what that degree will be.” The booklet (available online or by order at http://www.dsa-uk.com ) goes on to address such issues as the possibility of having a second child with Down’s Syndrome and some of the medical conditions a child with Down’s Syndrome might develop.

Another excellent website with a lot of medical information is located at http://www.ds-health.com and it is authored by Dr. Len Leshin, a pediatrician and father of Avi and Nathan. Avi has Down’s Syndrome and he has inspired his father to write essays about children with DS for other parents. Dr. Leshin’s site has gathered over a dozen awards for excellence. It’s also an incredible testimony to the transforming power children have over their parents.

Integration into a normal life

Mary-Anne Kazmierski, 67, lives in Ottawa, Canada, and, since her retirement from teaching five years ago, spends all of her time fighting for the rights of handicapped

children. (She also spent a lot of time doing this before she retired and is not paid for her work.) Mary-Anne and her husband Carl, a Scripture professor at a local university and a permanent deacon, are the parents of three children, including 30-year-old son Gregory who has Down’s Syndrome. They mounted a successful appeal which allowed Gregory to go to a regular school near their home, and he was the first child with Down Syndrome to be able to do so.

 “We have been fighting for Greg’s life ever since he was born. Sometimes, it was so

discouraging to face such evil and prejudice and it still is with the kids I am working

with, but do you know what? Greg just needed some special care. He is doing great now. He works full-time in a grocery store and loves it. He knows more people in the neighbourhood than I do and has a wonderful life. When he turned 30, he wanted to bring some friends together at a local bar. Seventy people showed up and I didn’t know any of them, but they all love him!”

“Isolation kills these children. They need to be fully integrated, and they are such a

huge source of joy. Would I be working with all of these handicapped children right

now if it wasn’t for Greg? I have always loved children, I loved learning and I loved

teaching (for many years, Mary-Anne trained teachers and, among other achievements, was the first English Canadian to study at Lumen Vitae), but having Greg really helped me understand what a blessing these kids are and the challenges they are up against. I wanted Greg to have a life, and I want these other kids to have a life too!”

Profoundly normal

In February of 2003, American television networks aired a made-for-television movie

called Profoundly Normal, starring actress Kirstie Alley (of the Cheers and Veronica’s Closet television comedies). The movie is based on the true story of Donna and Ricardo Thornton, two mentally-challenged individuals who married and had a child. The Thorntons were interviewed on national television twice and part of the movie is taped in interview style. Kirstie Alley stars as Donna Thornton, a woman who, from the age of 8, lived at Forest Haven, an institution for developmentally disabled people of varying ages and ability. She meets Ricardo and they become friends. Despite suffering abuse and neglect at Forest Haven, the pair dream of a better life elsewhere. When Forest Haven is closed by a court order, Donna and Ricardo face new challenges. Reading, cooking and taking the bus all become enormous obstacles, as they were not taught to look after themselves.

Their friendship turns into love, and, despite considerable opposition, they marry and

have a normal child. While Donna and Ricardo do not suffer from Down’s Syndrome as such, their story reminds us of how, in the not so distant past (Forest Haven closed in the 1970s), we used to dehumanise those suffering from Down’s Syndrome or any other mental or physical handicap.

They were often considered sub-human; often institutionalised and isolated, when, in fact, they usually thrive by being integrated and included in everyday life, whether it is home, school, church, work, sports and any social activity.

Profoundly Normal reminds us how loveable these people are, and how they enrich our lives in so many ways. There are people with Down’s Syndrome who are artists, actors, athletes and social activists.  More importantly, they can live happy and productive lives. Of course, that doesn’t mean that they don’t need help. However, isn’t that the case with many of us who need additional support at one point of our lives or another?

Noah’s Ark

This is something Canadian Jean Vanier knew instinctively. With his spiritual director Father Thomas Philippe, Jean invited two men with a developmental disability to live with him in an old house in the French village of Trosly-Breuil. He named the house L’Arche after Noah’s Ark and eventually welcomed more men and women with developmental disabilities and the assistants who live and work with them. L’Arche has grown into an international federation of more than 100 communities in nearly 30 countries. Jean also co-founded the Faith and Light movement, a network of prayer and share groups for the families and friends of the mentally challenged.

One of L’Arche’s best spokespersons was Henri Nouwen, a Dutch priest who died in

1996 and who had lived at L’Arche since 1986. Nouwen taught at Harvard, Notre Dame and Yale, was in demand as a speaker around the world and yet learned life’s most poignant lessons while living at L’Arche.

Despite his accomplishments, Nouwen was described as a nervous man, who had trouble making sandwiches and who once wrecked a new car as he was driving away from the car dealership.

While at L’Arche, this author of over 30 books developed a deep friendship with Adam, a man who never spoke a word, who taught Henri to slow down and to trust in the power of love. Henri rarely accepted a speaking engagement without taking a member of the community to speak with him. “People won’t remember a word I said, but they’ll remember (we) stood here as friends and equals and spoke together.”

Henri realised that the residents of L’Arche were different, but that we all are different and that we are all worthy of love.