Despite others’ perceptions, my disabled son lives a full, rich life

Twenty percent of the youth in Canada have a disability — or as my son, Lee, calls them, superpowers. His powers are trispastic cerebral palsy, attention deficit disorder, epilepsy, global development delay and sight impairment.

In the 18 years since Lee was born, fellow church attendees in both the United Church and Evangelical Lutheran Church have said they will pray for his healing and wholeness. But I wonder if they’ve read the Hebrew Bible’s Creation poem, which tells us that on the sixth day, all of humanity is created in the image of the Holy.

Those people in church are missing an important point: my son is whole, as are those with invisible disabilities, like me. And by missing this point, they cast the myth of a normal life upon families like mine, inflicting constant grief.

When it comes to the future, people with complex medical needs face an additional element of the unknown. Each morning before I leave for work, I check to see if Lee is still breathing. I check to ensure his life — and the blessings of his laughter, joy, greetings, hugs, creativity, exploration, curiosity, hockey and baking — will continue to thrive.

More on Broadview:

• Canada isn’t as accessible as it claims to be
• ‘I’ve always believed that disability is part of God’s good design’
• How to improve workplaces for neurodivergent employees

My family and I have now joined a Presbyterian church, but it still hurts to know that some people in past churches didn’t see my son as complete. In so many spiritual homes where I thought we belonged, Lee’s wheelchair was seen as a fire hazard and, by extension, my son as no more than a piece of furniture. We were expected to accept the antiquated accessibility in old buildings and be happy with what we were given. In one church, where I was youth and children’s pastor, several people shared that my son and his superhero friends “were not to be seen” in church.

Despite the pain caused by these few church members, Lee has a full life, rich with belonging and purpose. He volunteers at his school. He has been involved in chaplaincy and street ministry. He is missed when gone and asked about, whether it’s a neighbour who hasn’t seen him on his community rolls, a store clerk, church friends or those at the local bookstore or library.

We do not know when he’ll go to the grand tea party, but in that moment, it will be a celebration for the created image he is, whole and complete.

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Ty Ragan is an instructor, advocate for belonging and father in Calgary.

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