Matt Carey is proud of his son with an intellectual disability and determined not to hide him from the world.
When we were expecting our son a doctor told us he would be very disabled. I had feared hearing that and yet I had never prepared myself. I didn’t even know what questions to ask. After many sleepless nights the question came to me. I called a friend of mine whose daughter is disabled and asked simply, “Is she happy?” Yes, he told me, she is generally happy.
I didn’t know whether my son would be able to be happy. In our society we often equate disability with unhappiness.
A few days later we learned this was a misdiagnosis.
When my son was two we realized he was disabled, for different reasons. There were suddenly far too many things to do than we could manage. But I never thought, “My son and I should set an example.”
I did want to make sure my son got out into the world. For him. I knew it would be very easy to retreat to our home. So we go into the community as often as we can.
People notice us. Once, a man approached us. He was very upset as he was trying to come to terms with his mother’s dementia. He saw a parallel between his mother and my son. And he noticed that my son and I very much enjoy our time together, even though we are very different.
My mother had recently passed away after years of dementia. I told my neighbor what I had learned from my son. This person in front of you is still a valid person. My son is very different from other children. My mother was different than she was when we were younger. But I learned to enjoy the time I have with the people in front of me rather than comparing them to some “normal” person.
I told my son, “I’m talking about you because I’m proud of you.”
People notice my son and me. Sometimes they see us struggle. Struggle hard. Often they see us enjoy our time together.
I don’t mind that people notice us. When they do, I remember when my friend helped me, when my son taught me to accept my mother. And I hope that our struggles and our joys set an example for others.
With a Perspective, this is Matt Carey.
Matt Carey is a tech researcher in San Jose and parent of two.