When French Catholic Jean Vanier brought two men with intellectual disabilities to live with him in his home, he did so more out of a sense of religious duty than anything else.
But as time went on, he began to realize that what the men needed was not help, but friendship. In the founding of his L’Arche (The Ark) homes for people with intellectual disabilities, friendship became the pillar of what those communities were and are all about.
“In short, Vanier had discovered they shared a common world,” Professor Stanley Hauerwas said in his keynote address on Nov. 8 at the University of Notre Dame’s annual conference sponsored by the De Nicola Center for Ethics and Culture.
Hauerwas, a theologian and the Gilbert T. Rowe professor emeritus with joint appointments at Duke divinity school and Duke law school, was a personal friend of Vanier, who died at the age of 90 earlier this year.
“I don't know where we would be without such witnesses today. It's remarkable,” Hauerwas said of his friend.
In L’Arche homes, core members are permanent residents who have intellectual and other disabilities, while assistants are adults and trained caregivers who live in L’Arche communities with the core members, typically for a one-year commitment at a time.
As the L’Arche website states, being an assistant is primarily about being a friend.
“In the communities of L'Arche, we live and journey together, men and women with disabilities and those who feel called to share their lives with them,” Hauerwas said.
“We are all learning the pain and joy of community life where the weakest members open hearts to compassion and lead us into deeper union with Jesus. We are learning to befriend them, and through and with them to befriend Jesus.”
Friendship with people with disabilities is often hindered by fear and false perceptions on the part of non-disabled people, Hauerwas noted.
“We are fragile creatures whose vulnerabilities produce fears that make our being befriended by the disabled frightening,” Hauerwas said.
This is in large part because people with disabilities have the gift of honesty, Hauerwas said - they are unimpressed by accolades and accomplishments, and are only interested in you as yourself.
“Such fears do not go away, even if we have been befriended by the disabled. That is why, as I will suggest, that friendship must be communal because only a community who is made of those aware of their limits can create the peaceful space for all to flourish, disabled and abled alike.”
The false assumption that people with disabilities are suffering can hinder friendship with these people, Hauerwas noted.
“As (Brian Brock, an author on disability) points out, ironically, those who are severely intellectually disabled do not struggle with their disability because they're wondrously free from pondering what others suppose them to lack,” Hauerwas said.
“Brock is challenging the presumption that those who are labeled intellectually disabled suffer from being intellectually disabled. They suffer from the attitudes and behaviors of those who imagine how they would feel if they were intellectually disabled. In short, we project on the disabled how we think we would regard our lives if we were them,” he said.
“But because people who are mentally disabled are not people other than who they are, they accordingly can and do enjoy who they are,” he added.
Brock, whose own son Adam has Down syndrome and is autistic, notes in his writings that knowing Adam has led him to a deeper theological understanding of what it means to accept the gift of people with intellectual disabilities.
“(Brock) understands the Christian Gospel to offer a way of life that enables our ability to live as vulnerable beings who have made peace with our limits and are able to delight in the unexpected,” Hauerwas said.
“Such a way of life can be joyous and free because we seek no longer to be gods, but to be content, to be creatures whose flourishing does not mean we will not suffer, but as the stories of scriptures often make clear, it is through suffering and vulnerability that we discover our place in God's story.”
Throughout his life, Vanier testified to the real friendships he had with his friends with disabilities. Some people still doubt whether such friendships were possible, because they believe that friendship necessitates an equality in agency, Hauerwas noted. He then provided several examples of stories of friendship between assistants and core members, or the family members of the disabled, to show how such friendships are possible.
“Vanier's friendships with the core members with whom he lived stands as a stark reminder that friendship between people who are intellectually disabled, and those that are not, is an actual reality,” Hauerwas said.
Hauerwas drew several examples from Patrick McInerney, an English anthropologist who lived for 15 months in a L'Arche home and wrote of his experiences in a paper entitled: “Receiving the gift of cognitive disabilities: recognizing agency in the limits of the rational subject.”
McInerney, not unlike Vanier at the beginning of his work, started at L’Arche presuming that the core members did not have agency like non-disabled people.
“He encountered Rachel who was making random hand gestures. Sarah who was rolling herself around and around in her wheelchair. And Martha, who spoke constantly but did not seem to make sense. McInerney assumed such women were incapable of active engagement with the world,” Hauerwas said.
But he eventually came to see these women in a different light, and realized that their agency comes from their own acknowledgment of their vulnerabilities and dependency on others.
In one example, Maria, a long-term assistant, told McInerney about an experience with core member Sarah, who could not communicate verbally. Maria was given the task of bathing Sarah, but was having difficulties.
“Maria confesses she did not know what she was doing. But she assumed that neither did Sarah know what she was doing. Finally, however, after some time, Maria figured how to help Sarah bathe herself. She (later said) to Sarah: ‘And you just sat there very patiently and quietly letting me make error after error. When I finally worked out what the right thing to do was, you looked at me dead in the eye and then you laughed at me,’” Hauerwas said.
“Through these exchanges, the core members’ gifts of the heart are discovered,” he added.
In another story of friendship and encounter, Hauerwas recalled Hilary, an assistant who watched a core member smiling and swaying and enjoying herself in front of a full-length mirror. Hilary said she realized that Sarah was not able to care whether other people might consider this behavior self-obsessed, and so she was free to love and enjoy herself.
“Sarah really loves herself and she helps me to start loving myself,” Hilary told McInerney.
The lessons learned from accepting one’s life as a gift, and accepting others’ lives - including those with disabilities - as a gift, leads to a system of ethics that stands in stark contrast to ethicists like Peter Singer, who believes that people with disabilities are of limited moral value to society, Hauerwas noted.
The lives of people with intellectual disabilities “have more in common with unruly saints of the Church, according to McInerney, than the rational agents such as Peter singer assumes. Those who have learned to be their friends, friends with people like Sarah, value the way they transgress assumed norms of behavior and express the value of a liminal community.”
“I think that my own view is that if in a hundred years Christians are identified as those people who do not kill their children or their elderly, we'll have done a pretty good job, but that's the challenge,” Hauerwas said.
In one final example of friendship, Hauerwas recalled the friendship between a core member Eric and Vanier. Eric was blind, deaf and could not speak, but Vanier knew he could still communicate through touch.
“That is what they did day after day. They held and washed his body with respect and love. Slowly but surely they were able to communicate with him and he communicated with them,” he said.
Vanier reflected on this friendship “by suggesting what Jesus commands us to do is to be befriended by the weak those in need, the lonely.”
“For when the poor, the weak and the lonely claim us as friends, they prevent us from falling into the trap of power, especially the power to do good,” Hauerwas said. “To be befriended by the poor and the disabled saves us from the presumption we must save the savior and the church.”