An Interview with Dr. Pamela Cushing

This issue explores the theme of altruism with particular
reference to L’Arche as a kind of laboratory for what we might
learn about it. L’Arche is built on the altruism or generosity of
the many young volunteers who come as assistants to share life
with people with developmental disabilities in its homes and
programs. These young people accept a lifestyle that is radically
different from their peers who are not in L’Arche. They come
for a year, or two, and some stay much longer. What motivates
and sustains this kind of generosity?

Beth Porter – For your PhD research you interviewed over
100 L’Arche assistants across Canada. What did you learn
about altruism from them?...

Pamela Cushing – I anticipated that many assistants
would name altruistic motives as the reason they came to
L’Arche. In fact, most of them
were uncomfortable with the
term “altruism” and even strenuously
corrected me, saying in
various ways, ‘actually, for me
this is not about sacrifice. It’s
about living a full life.’ I was
struck by their thinking that if
they got something positive out
of the experience, this cancelled
the altruism in their initial motive. A massive American
study done by sociologist Robert Wuthnow suggests this pattern may be true of our culture in general.
He found even people who gave significant time to volunteering
were highly reticent about making altruistic claims,
preferring to attribute their actions to personal satisfaction
or happenstance. I think there’s danger in negating altruism
as part of their motives. Pure altruism is rather rare.
I discovered a blend of motivating elements in each assistant’s
story: 1) an altruistic impulse; 2) self-interest – an expectation
of growing and learning by giving of themselves, or an
expectation of adventure through living in a different country
and with new people; and 3) a pragmatic element – coming to
L’Arche made sense at the time. These motives didn’t usually
function as discreet variables but worked in concert.
One assistant said he saw L’Arche as a practical setting in
which he could embody what he believed from his faith and his
studies but had not been able to live out in a university setting.
He saw ‘doing good’ – being altruistic – as part of his identity,
and being a L’Arche assistant gave him a context to live this
identity. Another assistant had been involved in community
service but then went through a period of what she called
“chaotic, destructive self-indulgence.” She said, “I felt L’Arche
could be the moral compass I needed.” It could help her return
to the person that she wanted to be, which included serving
others. In both these stories self-interest and altruism are in a
productive tension, the fruit of which can be healthy service in a
context where the caregiver’s awareness of what is being
received enhances the dignity of the service.
What discourages altruism among young people?
Indifference, and cynicism. When young people are recognized
and rewarded in an interpersonal, social way, not just by
adults but by their peers, for other knowledge and other experiences,
that dampens their desire to be part of social change. If
everyone in your Facebook network is discussing the best songs,
latest parties, and blogs, you are not going to get much recognition
for trying to talk about your latest volunteer venture.
Cynicism is a seductive attitude because it
allows us to be passive. It feeds hopelessness by making problems
seem so big and systems so impervious to our resistance
that we allow ourselves to do nothing at all.
How can these negative influences be countered and altruism
nourished?
There are some encouraging attempts to address these attitudes,
either through giving young people opportunities for
practical action that is valorized, or through research that
relates, for instance, to character education. In the latter area,
the Templeton Foundation funds a number of studies that
examine, for example, how goodness and personal and social
responsibility are nurtured in young people, and how competence
in ethical and moral reasoning is developed.
Part of the magic I observed at L’Arche is that it gives assistants
the needed relational context in which their compassion
or generosity are recognized. Assistants talked a lot about the
importance of being part of a community of support that
includes the people with developmental disabilities. There are
those little moments where you can decide to do the bare minimum
or you can decide to do more. Part of us wants not to do
more. If your co-workers feel frustrated and don’t share the
desire that you have, it can be hard. Most individuals have a
very difficult time continuing to give unless they have a supportive
community around them that helps them feel nourished
and stay true to their ideals. This is especially important in
face of indifference from the broader society.
The ability to get behind the label and to come to know
the person – an ability children have – usually needs to be
relearned in adulthood. Knowing people is key. There’s no ‘the
disabled’ in a L’Arche experience. It’s Peter, it’s Roy. And then
you see they are just like you. L’Arche assistants acquire this
new learning within a powerful counter-cultural setting and
they often have a sense of having grown. This can be a strong
source of motivation. L’Arche regards such relations as normal,
and it needs to be careful in so doing, that it does not dampen
the assistant’s initial sense of radicalism and heightened awareness
of the social injustice to which people with disabilities are
subject in so many little ways.
Anthropologists are increasingly recognizing the importance
and complex diversity of the particulars within a culture, rather
than trying to find cultural universals that tend to gloss over
their internal differences. Sherry Ortner, for instance, says the
danger for social scientists is to see the ‘other’ as a category.
You have to see the other person as having the same mixed,
complicated motives and desires as you have, whatever their
ethnicity, class, education, ability, religion. One-on-one
exposure to others is a way to see people as human beings,
not bundled together and labelled.
In my own youth I had exposure to a lot of different people
through travel and volunteer work that my parents did. This
kind of experience helps counter stereotyping. Jay and I ask
ourselves as parents, are we doing enough to model service, to
introduce our child to those who are different, and to nourish
the roots of empathy.

► Develop a language of belonging to inform the emerging dialogue on belonging
► Celebrate diversity in meaningful ways to foster a culture of intentional understanding
► Nurture leadership capacity among youth with disabilities who are eager to be ‘Ambassadors of Belonging’
► Create opportunities for belonging at the local level through community networks
► Cultivate strong, resilient and diverse relationships at all stages of life
► Organize team games and group activities to foster relationships based on a common goal
► Develop inclusive and accessible online technologies that reinforce face-to-face interaction without replacing it
► Encourage story telling as an effective way to develop understanding, acceptance and trust
► Focus on schools as a primary site for promoting a culture of inclusion and understanding
► Emphasize a spirit of commonality and integration rather than difference and segregation among community centres and Independent Living Resource Centres
► Invite family members to contribute and share in initiatives that celebrate youths’ abilities
► Commit to a dialogue on belonging that is proactive, intentional and long-term
► Recognize youth with disabilities as vital companions and guides on the road to understanding belonging

by Jean Vanier

Insecurity is, I think, at the heart of one of the great human dichotomies: the need for belonging and the need to be oneself, a real person, fully alive. In the fulfillment of the need for belonging, is a certain surrender of the self to the group, the community, the culture that provide a set of received truths. But to go further in the search human fulfillment and inner freedom we need to reflect on the certitudes of the group, even to question them and take the risk of going against the grain.

It is when we act as individuals, allowing our deepest selves to arise, that what I call the principle of insecurity is most evident: we choose to live a certain insecurity and question things held to be true. However, to be insecure in this way is also, I believe, an important quality for the group or community; the things the group holds dear can be a looked at, reflected on, questioned, and deepened, the better to find the truths contained therein. Let us look at this in more detail...

In many countries of the world, the family, the village, and the tribe still remain strong; people feel bonded to one another. This bonding gives security; people know what to do and what to believe. Elders or leaders have a real power and authority. If someone falls sick, they are looked after. But there are disadvantages to such strong bonding. Members of the community sacrifice their individual consciousness and freedom at the altar of security and unity, the altar of bonding. For some, this submission can cause pain, particularly for those who are young and ambitious, who do not want to be enslaved in ancient traditions and in the collective poverty that is embraced by many such communities. The human urge is to liberate ourselves from what we perceive to be oppressive belonging. We want to find freedom but we want to find it within some kind of structure.

Among humankind, the family represents the basic social unit. However, everywhere we look, this basic place of belonging is breaking down. Let me take the country where I live, France, as an example. In Paris, one out of every two marriages ends in divorce and in the rest of France, one out of three goes the same way. Statistics show that everywhere, more and more people are frightened of commitment.

And why is this happening? I believe it is because our Western societies have place the power, rights, and needs of the individual above those of the group. We have developed societies based on the principle of competition; people must work hard in order to succeed. Now, in a certain context, this can be healthy, particularly since a group can stifle both personal consciousness and freedom, as well as the development of one’s gifts and capacities. Competition stretches our capacities but a focus on individual values and rights can push us into a terrible loneliness.

This is a loneliness that can bring some people, especially those who feel ill-equipped to live in the competitive world or who have never truly belonged in a family, to the depths of despair, where they lose their sense of self and of meaning. This is a place of insecurity at its most profound, insecurity in its most negative aspect.

But this loneliness can also cause us to seek out new ways of belonging, in places where we are helped to find a meaning of our lives, places where we may live out an idea, where we may experience a true bonding with others. In the same way, this loneliness can cause us to search for new ways of bringing greater peace and justice to our society, to struggle with and for those who have been downtrodden, so that they may find an equitable place in society. This is a loneliness that will push some to seek new ways of healing the broken and those who cry out in pain; it will push others to seek truth and a new relationship with God.

A society based on the Darwinian "survival of the fittest," where we all fend for ourselves, has serious disadvantages. It promotes a strong, aggressive attitude and the need to win. It can paralyze the development of the heart, prevent healthy cooperation among people, and promote rivalry and enmity. It tends to marginalize those who are weak and even those who reject individualistic principles and want to live in and for a society based on truth and justice for all. In a society that encourages an ethics of economy, of winning, and of power, it is important to be admired. In such a society, an ethics of justice, solidarity, and cooperation, and ethics of the common good, can quickly fade into the background. Individual success is all that matters. How can Western societies encourage the development of personal consciousness, freedom, and creativity and, at the same time, help us to not fall into self-centered attitudes and motivations? How can we orient the development of the individual towards works of justice, the struggle for peace, and helping others to develop their gifts and find their place in society?

'We often talk about embracing diversity in Canada, but ... true diversity, in the broadest sense, that's missing'

Bruce Ward
The Ottawa Citizen

Sunday, March 02, 2008

Sydney turned nine a few weeks ago, so now she's bugging her dad to get her ears pierced. Michael Shaw, her father, doesn't see that happening until she's older, but Sydney has a way of overcoming his objections. Little girls have that effect on dads.

Sydney attends the local elementary school in LaSalle, a Winnipeg suburb, she goes to birthday parties, tells jokes, and is a lot like every other kid. But Sydney is different. She has Down syndrome.

Had Michael known that Down syndrome was present before she was born, he and Leslie, Sydney's mother, would have terminated the pregnancy.

"I know there would be no Sydney, and that tears me apart now," he said. "She's a wonderful, joyous child."

Michael and Leslie, both university professors, wanted a perfect child who was bright and athletic.

"We got Sydney," he said. "She has enriched my life to a degree I didn't think was possible. She changed my whole focus on life, on what has value and what doesn't have value, and what we consider valuable. We don't all get to be Wayne Gretzky, and there's nothing wrong with that."....

When Michael accepted his daughter's special needs, he learned how to be a father.

But he worries that one day children like Sydney will be airbrushed out of our society because of their perceived imperfections. That's why he's on the board of the Canadian Down Syndrome Society (CDSS), an advocacy group concerned about the coming of broader prenatal testing in Canada and the implications for the future of Down syndrome children.

Until last year, only women 35 and older were routinely tested to determine if their fetuses had the extra chromosome that causes Down syndrome. As a result, many couples like Michael and Leslie got the diagnosis only at birth. (In a twist of fate, prenatal screening did show the condition was present in Sydney, but the doctor did not pass on the information. She thought the positive test result was incorrect because Leslie's age did not put her in a high-risk category for Down syndrome.)

In February 2007, the Society of Obstetricians and Gynaecologists of Canada (SOGC) issued new guidelines recommending that every woman, regardless of age, be offered noninvasive prenatal genetic screening.

There are some 35,000 people in Canada with Down syndrome. It is the most common genetic disorder, occurring once in every 800 births.

About 80 to 90 per cent of Canadian women who are given a Down syndrome diagnosis choose to have an abortion. If the Down syndrome population continues to dwindle, there will be fewer people like Sydney -- and less funding for the services and support they require.

The CDSS says some doctors stress only the grim statistics and daunting challenges of raising a Down syndrome child in their discussions with couples facing a Down syndrome diagnosis.

"We would like to see information given to women in a fair and balanced and value-neutral way," said Krista Flint, executive director of the Down syndrome society. "We don't think that's the case currently -- we know that's not the case. Families involved with (the society) tell us regularly that that hasn't been their experience. The central message they receive is 'Don't have this baby, it could ruin your life.'

"There's certainly a social construct around the existence of disability that says people with disabilities are less valuable than those without disabilities." Ms. Flint feels that even the language inherent in the process of prenatal testing is to some degree biased.

"Screening means in and of itself to keep out that which is not wanted. I have yet to hear a family who have a child with Down syndrome describe their child as something they didn't want."

She stressed that the society is not involved with pro-life/pro-choice debates. But she suggested that the way women are provided with information about prenatal genetic testing tends to lead to termination.

"The obligation of the medical community, as well as organizations like ours, is to ensure that women have the opportunity to hear not just about the challenges of a life with Down syndrome but also about the richly rewarding lives that are possible for citizens with disabilities. And I don't think that happens."

Dr. Phil Wyatt, a member of the committee that drafted the guidelines for obstetricians and gynecologists, said the goal was to avoid a paternalistic attitude in providing "the best possible information upon which patients can make the best decisions for themselves.

"Many of these issues are complicated and complex and rather than taking the old-style approach -- 'We'll tell you what's good for you' -- we wanted to summarize the information on a scientific basis and make it available."

The SOGC's intent is to make sure people are "given unbiased information in the proper context about what conditions can be detected through prenatal screening, the impact both positive and negative they may have on women's lives, and to provide some assistance in helping them reach decisions that are best for them."

But what women are actually being told by their doctors is open to debate.

"I don't think any of us would disagree that there can be a wide variation in what various individual physicians say to various patients," said Dr. Wyatt.

Many women are waiting until their mid-30s or later to have their children, and prenatal testing becomes more significant for older mothers. When the mother is 25, the risk of a significant chromosome abnormality -- the most common being Down syndrome -- is one in 476 pregnancies. At age 35, the risk is one in 204.

Prenatal testing can also detect heart defects and cleft palate, which are not chromosomal abnormalities but are present in two to three per cent of pregnancies regardless of the mother's age. Knowing that a baby will be born with a heart problem means a cardiac team can be ready in the delivery room, for example.

The children born to Sydney's classmates may never know someone with Down syndrome. Yet as Michael points out, there has been no public discourse on prenatal testing, no debate in Parliament or in the legislatures across the country.

"We often talk about embracing diversity in Canada, but we mean cultural diversity. People of different abilities should be part of the Canadian fabric. True diversity in the broadest sense, that's missing."

The way Michael figures it, Sydney is not that different from the other kids in her class, or from her six-year-old sister Allison, who has no disabilities.

"The things that separate her from her peers are much less than the things that bring her together with her peers. She does all of the things a nine-year-old girl should be doing, and has the same wishes and desires."

Look, he says, the only difference between Sydney and the other girls in her class is a single chromosome. And a single chromosome is the difference between a boy and a girl.

"But we don't tell parents, 'Oh, we've identified your fetus as a female. She's more likely to be predisposed to breast cancer, she's more likely to be sexually assaulted and she's more likely to have a lower paying job.'

"Yet when the single chromosome is for Down syndrome the medical profession chooses to give a litany of what can go wrong when there's so much that can go right."

Those born with Down syndrome suffer from mild to moderate mental retardation and are at high risk for a variety of health problems, including congenital heart defects. But parents like Michael are undaunted.

"For the first time, we now see Down syndrome folks living into their 60s, holding jobs and outliving their parents. They're contributing to society. I often tell people my greatest goal for Sydney is that she be a taxpayer. And that's in the realm of possibility."
© The Ottawa Citizen 2008


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