Down Syndrome Screening and Peter Lincoln

The Commissioner, mandated by the Minister of Health and Social Services, just presented his report on Down syndrome screening. He suggests, among other things, that information on the genetic condition of Down syndrome become a standardized process during pregnancy, made available to all parents. This recommendation is meant to encourage their free and informed choice to give birth to a child with the Down syndrome. The Commissioner brings out the risk that this measure will cause a loss of social value of people living with the Down syndrome and put an additional burden on their parents now and increasingly in the future if screening is offered to all. In relation to this issue, we would like to present Peter Lincoln.

Peter Lincoln

Peter Lincoln died a few days ago. He was 42 years old and had the Down syndrome. He lived the last 20 years of his life in a community of L'Arche in Montreal (founded by the Canadian Jean Vanier). During a farewell evening gathering his family, friends and L'Arche community, on January 26th, we remembered everything Peter had brought us. Peter knew only a few words. We liked to repeat his favorite words. The one he used most frequently was "happy". Peter was indeed a man of peace and joy. Everywhere he was, he brought this with him.

Even though he wasn't really effective, he enjoyed a lot going out to work everyday. In the art workshop, he was drawing. But his strength was to stop regularly and look at everybody around the table, smiling to them. He was in relationship with everybody. Peter didn't have an easy life. In his last 14 years, he needed a hemodialysis three times a week. He had a few surgeries. Everybody was jealous of his good mood. Sometimes, his face was telling us he was suffering - especially returning from the hemodialysis - but he didn't complain.

During the farewell evening, each of us said how Peter had been an inspiration, how valuable he was and how humanly he was living. One said Peter was obviously happy of who he was, a quality still beyond reach for him. Another said of him that he knew how to live in the present. Another... that he had a knack of fraternal communion. His father told us he had been the last of seven children. All had lots of success in their studies and professional lives. Only Peter couldn't learn "anything". But, according to his father, he was the one who brought unity in the family. In his presence, he said, no conflict could last.

All children and adults with the Down syndrome don't necessarily have Peter's harmony. Few of us, by the way. In L'Arche, we welcome people living with an intellectual disability. Many felt rejected by those around them and had to build walls around them to defend themselves, which increased their difference and turned them apparently hard to live by. The aim of our communities, like so many community organizations similar to ours, is to help them regain their self-confidence and discover the beauty of their inner self. We can testify this transition in many of them and in us who live with them.

A Chock for the Parents

Nobody can force parents to welcome a child with a handicap. In that sense, we can understand the Commissioner when he suggests that we provide a free and informed choice to all parents to welcome or not a child bearing this difference in his/her chromosomes. It is truly an overwhelming shock for any parent to hear the announcement that his/her child will have the Down syndrome. They need real support to assume this reality, accept it and, gradually through the years, transform it into good news. The Commissioner made clear the importance of such support and the efforts necessary to achieve it.

During the funeral, Mr. Lincoln, Peter's father, told us of a friend who had helped them a lot, him and his wife, to know what to do with their different child. That man had given them this advice: "Keep him like any of your children. Bring him everywhere with you. Be proud of him." After Peter's fruitful life, Mr. Lincoln told us his gratitude for that advice. He authorized us to publish this story and talk about the gift his son has been for their family and for us all.

Screening is Discriminatory

Establishing a systematic screening to identify the chromosomic anomaly leading to the Down syndrome is completely discriminatory. Nobody would dare proposing such a screening, funded with taxpayers' money, to identify the gender of a child or eventually a gene determining his/her sexual orientation, as it would be fiercely criticized as discriminatory by everybody, even more if this information was part of a hidden scheme to eliminate a gender or a sexual orientation. But the people bearing the Down syndrome won't protest, their have neither the means nor the power to do so. And the screening will systematically put the children to be born with the Down syndrome at a disadvantage: statistically, more than 90% of the parents choose the abortion of the foetus with positive results in the screening.

Underlying in this measure, as we see, is a powerful stigma banishing the Down syndrome and the intellectual disability. Our experience shows us how much we gain in human and cultural richness when we mix with people with an intellectual disability and allow them to live normally in society. How can we make our mentality evolve towards welcoming the unique gift of those with an intellectual disability?

Revealing the Gifts of People with the Down Syndrome

We think this recommendation from the Commissioner reflects our current mentality and that resorting to civil rights defense could prove effective as a means of bringing about change in that attitude. But we also believe that systematic screening would be quite useless if we had an informed conscience of the unique value of each person and particularly of those with an intellectual disability. We wish to invite all those who have the chance to live with such persons to reveal the special gifts they bring us. Essentially, they humanize us through their heart. They help us go past the instinctive fear of the difference and remain open to every person, whatever his/her limits or qualities.

For example, each month during school year, for 5 years now, L'Arche Montréal welcomes a new class of students from high school for a day of awareness-raising on the gifts of people with an intellectual disability. This day is called "Oser la rencontre" ("Dare to Meet"). Peter was one of those who welcomed the youth through the years. Besides him, Denise, Michel, Robert... the students draw, sing, share... At the end of the day their experience is that of a discovery: "They know better than us how to live." "They teach us to love what we have and what we are." "Today I felt loved and welcomed." Some young girls even go so far as to say that their choice of ending an eventual pregnancy could be different now that they know intellectual disability.

If each citizen, family, company or institution welcoming people living with the Down syndrome engage themselves to welcome and reveal their unique quality, without concealing the difficulties inherent to this opening, then we will grow as a society and become more human.

Signing,

Yvette Légaré, President of the Associations of L'Arche in Quebec
Éric Bellefeuille, Regional Coordinator of L'Arche in Quebec
Gabrielle Beaulieu, Vice-Coordinator of L'Arche in Quebec
Patrice Paradis, Director of L’Arche Mauricie (Trois-Rivières)
Sylvie Morin, Director of L’Arche Beloeil
Sophie Côté, Director L’Arche Joliette
Geneviève Moutquin, Director of L’Arche L’Étoile (Québec)
Nancy Lamothe, Director of L’Arche Agapè (Gatineau)
Jocelyn Girard, Director of L’Arche Montréal
Robert Larouche, Director of L’Arche d’Amos

There is also a community in Sainte-Malachie.