Rome conference fears Down syndrome may be in final generation

ROME – Bridget Brown is a successful young woman, who captures the attention of everyone she meets with her vitality and confidence. Bridget redefines the term “inclusion” by being the first person with Down syndrome to attend public school in her Illinois school district.

That introduction was taken, verbatim, from Brown’s IMDb profile, the world’s most popular and authoritative source for movie, TV and celebrity content.

“I’m here to help people to understand that people with disabilities can be included in their communities,” she told Crux. “I want to help people with disabilities to be included and be a part of their congregation.”

“Here” is an international conference being organized in Rome titled “Catechesis and Persons with Disabilities: A Necessary Engagement in the Daily Pastoral Life of the Church.”

Some 420 people from around the world are participating in the event that is being organized by the Pontifical Council for Promoting the New Evangelization, America’s National Catholic Partnership on Disability, the UK-based Kairos Forum and the Italian Bishops’ Conference.

On Saturday, the group will meet Pope Francis, and Brown is giving a letter to him focusing on people with Down syndrome. Crux got a preview of the text, which she asked remain unpublished until she has the opportunity to hand it to the pope.

“But it addresses the fact that I might be a member of the last generation with Down syndrome,” she said.

An estimated 6 million people worldwide were born with Down syndrome. However, pregnancies in which the baby is diagnosed with it are being terminated at high rates in countries where abortion is allowed. For instance, Denmark boasts a 98 percent termination rate of babies who test positive for Down syndrome, followed by the United Kingdom at 90 percent, the United States at an estimated 85 percent and France at 77 percent. Iceland has, for all intents and purposes, “eradicated” it.

The purpose of the conference being held in Rome is to try to exchange best practices and share programs of inclusion of people with intellectual and physical disabilities into the life of the Church, specifically from a catechetical point of view.

Asked about when she first got involved with the Church, Brown is very clear: “I got involved in my community when I was baptized, as a baby. Since then, I’ve been a part of the Church. I had my First Communion, my Confirmation, Catechism classes, everything.”

Her parents, she said, were welcomed with open arms into their parish: “They opened the doors, their minds and their hearts to allow people like me into the congregation.”

Though she’s Catholic, Brown sometimes goes to a Reformed Church in her hometown in Illinois, where she’s found many people with Down syndrome, deaf, and with other disabilities. “But we believe in the same God!”

Learning about God, she continued, “is the most important thing. God is not boring! God is good, he’s above all. He’s a cool guy. The first chapter of Genesis says, ‘God created the heavens and the earth,’ he created all things, the animals. Then he created human beings, Adam and Eve. And then we descend from Abraham, Isaac, Jacob, Joseph, and it takes us more into Exodus. The first part of the Bible is a longer chapter, it helps us know more about how God created us.

“And that’s very cool,” she said.

Italian Archbishop Salvatore Fisichella told the conference that outreach to people with disabilities is “not only obligatory, but urgent,” and that failures to do so are “symptoms of a culture that’s little inclined to respect the full dignity of every person.”

Fisichella is the President of the Pontifical Council for Promoting the New Evangelization, and thus, in effect, the pope’s point man for missionary efforts and catechesis.

Ticking off a series of worrying cultural developments regarding disabled persons, Fisichella mentioned recent reports that Iceland has all but eliminated Down syndrome through pre-natal screening.

“Eliminated!” Fisichella said, “as if they don’t know it’s a question of chromosomes and not an illness. Maybe somebody rediscovered the Tarpeian Rock,” he said, referring to a cliff in ancient Rome from which traitors were flung to their deaths. The punishment carried a sense of shame, since treason was considered the worst offense imaginable.

“Permanent attention and vigilance are necessary regarding people who live with conditions of life that easily can produce marginalization and exclusion,” Fisichella said.

“When that happens to a disabled person, who, by definition, can be weak and defenseless, then outrage and denunciation must have the upper hand, so that the story of civilization and humanity doesn’t take a step backward.”

Fisichella insisted that whatever their state of life, disabled people are imminently capable of receiving and understanding catechesis.

“A person might not be able to see, but still to listen,” he said. “A person might not be able to hear, but still to perceive. Maybe they can’t reflect, but they can still welcome in their hearts the force of someone’s presence.

“In sum,” Fisichella said, “no one is excluded from the Word that God speaks to us, with which He makes Himself known to everyone and lives among everyone.”

Reaching out to disabled persons, Fisichella said, is also a classic expression of Francis’s vision of a Church that builds a “culture of encounter.”

“How to encounter disabled persons today, how to help them meet Christ in the silence of their hearts and in the gestures that indicate his presence in their brothers, and how to favor their commitment to witness and, why not, to be protagonists as catechists and hence believers who pass along their faith, living it out and teaching it.” He said all deserve to be priorities for the Church.

Fisichella emphasized that to accomplish such a goal, one can’t be in a hurry.

“A culture of encounter,” he said, “doesn’t stop at a few rushed moments, and in formal teaching. Above all, it feels the need to live with people, to give them one’s time without the haste that prevents going to a deep level. Encounter is the discovery of another person, in their own mystery and their vocation.”

Speaking with Crux before delivering the opening remarks, the archbishop said he expected for the Argentine pontiff to deliver a “profound” teaching for this “part of the people of God,” when he encounters the group on Saturday.

This teaching, Fisichella said, is something Francis was bound to deliver both with words and with gestures. Observing the pope’s signs, the prelate said, is the best way to understand his teaching: “Every day, we can see how close the behavior and teaching of the Holy Father is to people with disabilities. We see it in the tenderness he shows when he meets with them.”

Mary O’Meara, Executive Director of the Department of Special Needs Ministries of the Diocese of Washington, agrees. The most important aspect of Saturday’s meeting with the pope will be his leading by example.

“What he’s going to do is much more important than what he’s going to say,” O’Meara told Crux on Friday. “It’s like Nike: Just Do It! If you’re going to sit around, theorize about it, create programs, come up with schedules … Just hug, be in that relationship, be able to make that connection, have that contact.

“The pope is able to do that, show the love and care of mother Church for all her children. If we can get that far, we’ve got it. It just needs to ripple,” she said.

O’Meara also shared that she hopes the Oct. 20-22 conference is “just the beginning” of the conversation, and that it creates a network so that the “more isolated ministries that feel very much in diaspora,” can work with one another. However, “being bold” she’d like to see the involvement of people with disabilities into parish life being about creating relationships rather than about creating a program.

“I’m coming to know you as my brother or sister in Christ, and how I can help you walk in your journey with the Lord,” she said. “It’s not about programs, it’s about people.”

She traveled to Rome with Laureen Lynch-Ryan, who coordinates the Center for Deaf Ministries in the Washington archdiocese. She’s deaf and spoke with Crux through the help of an interpreter.

Many times, she said, parents of children with disabilities feel isolated within their parish community, because the community is incapable of understanding what they need to do in order to help them, and to help their children have access to the sacraments.

“It’s very important to be welcoming and create a culture of belonging,” she said.

Among those who at one time or another were excluded from their parish life is Baroness Sheila Hollins, from the United Kingdom, one of the speakers at the conference. In the past three years, she’s often been quoted in the media as a member of Francis’s Pontifical Commission for the Protection of Minors. However, her work in the field of protection of children, with a particular focus on minors and vulnerable adults with disabilities, began much earlier.

Mother of two disabled children herself, a son with autism and a daughter whose spine was severely injured 12 year ago leaving her paralyzed, she sits in the House of Lords, is a past President and Honorary Fellow of the Royal College of Psychiatrists, and past President of the British Medical Association. She’s also written 60 books in the series “Without Words,” directed at people with learning disabilities.

Years ago, she told Crux, the priest in her parish told her that she needn’t bring her autistic son into Church. “Why not?” she asked. “Because he makes quite a lot of noise,” the priest responded. But she also encountered priests with the opposite attitude, helping her son get ready to receive his First Communion at his own pace.

Hollins too is against initiatives such as a monthly Mass for the hearing impaired or a special center for people with disabilities, because it keeps them out of sight and separate. “What people want more than anything is to belong,” she said.

The challenge is to “help parishes to create a welcoming, informed, comfortable ministry for disabled people, eventually led by disabled people themselves.

“So often I go into a church and think ‘where are the disabled people’?” she said.

Speaking about the work she’s doing at the pontifical commission, where she’s the only one with expertise in the field of disabilities, Hollins said that they need lay organizations and parish communities to really engage with safeguarding and not just see it “as a bureaucratic process.”

“It’s about the heart, it’s at the heart of inclusion,” she said. “If you don’t feel safe, where are you going to feel that connection with God?”