Young Man Journeys to a Meaningful Life, Disability and All

By Michelle Strutzenberger


On March 5, 2010, Paul Tiller realized a dream he, his family and friends had been cherishing for years — the Peterborough, Ontario resident moved into his own apartment. Paul’s arms jutted over his head in a sign of victory when asked what he thought as he stood in the centre of his new place.

For Paul and those around him, the move was an important milestone in his journey to a meaningful life, “disability and all.” It signalled his growing interdependence with a community that extended beyond his immediate family. He was 24 years old.

The start of Paul’s journey to the full life he now enjoys began in many ways the day his mother, Lucinda Hage, determined to take her own mother’s wisdom to heart and see him as a whole child.

Lucinda and Paul

It was only months after Lucinda had adopted Paul as a baby that he began having seizures and was eventually diagnosed with Tuberous Sclerosis.

Lucinda’s commitment to see Paul’s disability as only part of who he is would profoundly shape the lives of both her son and herself, she says.

Perhaps most importantly, it opened the way for others to share a similar perspective, which in turn opened all kinds of possibilities for Paul. “You create the future through your declarations, your way of being and your actions,” leadership thought leader Joseph Jaworski writes.

One of the greatest of those possibilities was the creation of meaningful relationships with many different people in the community. It was those relationships that were and are at the centre of Paul’s thriving, Lucinda says.

For instance, she’s convinced Paul progressed as well as he did after high school — a time when many people who have an intellectual disability flounder — in large part because his role models were now people in the community: bus drivers, “Dan the Man” and the staff at local sports and activity centres, as well as his co-workers at the Holiday Inn who valued Paul for his contribution.

Parents whose children live with a disability are understandably worried about their son or daughter’s future, Lucinda notes. The gaps in public supports and services are particularly glaring for adolescents who leave the school system — and the care and daily structure that go with it — according to a report from the School of Public Policy at the University of Calgary.

In 2012, Ontario Ombudsman André Marin launched an investigation into the dire lack of servicesfor young adults with autism and other developmental disorders after several families in crisis threatened to abandon their children because they could no longer care for them. The ombudsman has received more than 1,000 complaints from parents who are broke, sick or unable to find programs or group homes to keep their adult children safe.

While there are certainly no one-size-fits-all answers for anyone, Lucinda’s journey with her son has brought her to a place of joining in with many others who point to meaningful relationships within the broader community as the lifeblood of anyone’s thriving, including those who have a disability.

Strong communities recognize the capacity of all people, even those who are traditionally marginalized; and in strong communities everyone is included in the life of the community, author and thought leader John McKnight writes.

“If what we are doing doesn’t help people connect into meaningful relationships, it’s a waste of time,” says David Pitonyak, an advocate for schools and agencies to focus on relationship building for people who have a disability.

A key leverage point in creating these meaningful relationships is training and employing people to be life coaches and facilitators for people who have an intellectual disability, Lucinda says.

And a critical task in cultivating these relationships is discovering and lifting up the gifts of all those who are involved.

For instance, one of Paul’s gifts is that he isn’t concerned with people’s appearance or their social standing, but with their essence. “Paul allows people to be who they truly are and responds with unrestrained joy,” says Lucinda.

When people of all abilities are living together in community in complete equality and reciprocity, a “collective intelligence” is created that is more sophisticated than any group could produce on their own, Ian Brown writes in his book The Boy in the Moon.

When she first came across this perspective of Ian’s, shaped in large part by his journey to multiple L’Arche communities with his son who has multiple disabilities, Lucinda says she gained a stronger understanding of the effect Paul has on people with whom he has close relationships. “They wanted to be with him, not out of a sense of duty, but because together they experienced something unique.”

Lucinda has recently published a book on Paul’s journey, What Time is the 9:20 Bus? A Journey to a Meaningful Life, Disability and All.

She hopes the book will stir people to see individuals who have a disability in a new light — as people who are “the same on the inside, with the same desires and longing to belong as everyone else.”

She would also love to see people moved to reach out and support those who have a disability in developing reciprocal relationships, not only for the benefit of the person being supported, but the supporter and the broader community — so that everyone can flourish.

“We all have challenges in life to overcome, and a need to be accepted for who we are. People like Paul have something to teach us about belonging, forgiveness, emotional honesty, acceptance and unconditional love. I hope this message reaches as many people as possible,” Lucinda says.

For more on Paul’s story, click here.

For the original story, please click here.