The following contains the opinions, perspectives, and stories of Upstream Arts Co-Founder and Artistic Director Matt Guidry, based on his 25 years of parenting a son with differences, some of which are perceived and some of which are obvious.
My work and my personal life are much about advocating for individuals with disabilities. Not advocating for something special, but for basic respect, for acceptance and empathy and understanding in our communities and in our society. For well informed medical and therapeutic care. For grace, and for an invitation.
My son Caleb was born a mere one year after the passage of the Americans with Disabilities Act. It’s still hard for me to grasp that the basic rights that legislation ensured didn’t happen until right before Caleb was born. He barely missed living in an American society that largely mirrored the worst attitudes that I still encounter.
And now, our country has elected a President who openly mocked someone with a disability. That’s not a partisan statement. It’s a fact. The President-Elect did exactly that.
Of course we all know this kind of sentiment has been there all along. I would say that it’s been lurking under the surface, but that’s not true. It’s been bubbling up and showing itself clearly all along.
Twenty-five years ago, a mere two days after Caleb was born, a doctor looked us in the eye and said, “There’s not much good here.” It seemed that not even for a minute could that doctor imagine a life for Caleb that would lead to much of anything positive.
Fast forward 20 years and it happened again; a doctor simply could not imagine Caleb’s life was worth fighting for. This time Caleb was indeed fighting for his life, suffering from a life threatening pneumonia. He had spent two months hooked up to a ventilator that breathed for him. The last resort was to perform a tracheotomy. While we were discussing the possibility the doctor said, “He’s had a good life. You’ve been great parents.” As if 20 years of a life was good enough for someone with a disability simply because it was more than they had ever expected.
Fortunately we did not heed the advice of either doctor. Our reaction to the first doctor was, “Thank you very much, we’ll take it from here.” To the second, “Yes, he has had a good life, one that we would like to see continue.” And the truth of the matter is that for the last four years that Caleb has been living with a trach, he has seemed happier than he’s been since he was a little boy.
Of course it’s not only doctors that have denigrated the worthiness of Caleb’s life. When he was young and I was pushing him in his stroller along a city sidewalk, a couple of young men walked by and I heard one of them say, “That’s what happens when you don’t have abortions.” Caleb, in his mind, should never have been born.
And it hasn’t stopped. Just a couple of weeks ago, a stranger took one look at Caleb and wanted to give me a hug simply because I was Caleb’s father. The look of pity in her eyes was astounding. She really couldn’t imagine that I could actually enjoy being Caleb’s dad, that we could have a rich, full, and complex life together. And even though I swallowed my shock, smiled, and said to her, “He’s great. I don’t need a hug for being his father,” she had the audacity to move in and give me one of those awkward side hugs anyway. At this point in my life, after suffering the comments of so many people over the last 25 years, those with good intentions and those with something else in their hearts, I really didn’t think I could be that offended anymore. I was wrong.
I do try and give people the benefit of the doubt, like the woman I just described who tried to give me sympathy. I know they mean well. I truly do.
But I want to put it out there that even the most well-intentioned comments can have the opposite effect. The ones that hint at sympathy or pity immediately remind me of the painful assumptions that people make about Caleb everyday, BEFORE they even try to interact with him, before they see the intelligence and the beauty and the playfulness in his eyes, before they see and feel his grace.
You may be wondering what I would rather you do if you encounter us in public. That’s easy. Say hi to Caleb. Greet him. In a normal voice. Not the voice one would use with a child. He may be small, but he’s a man. Wait, and look for a reaction. Many people don’t have the patience, or the awareness, to see how he greets you back. But he does. It might just be in his eyes, but he’s engaging with you. Make small talk with him, and with me. Again, you might not think he’s reacting, but just keep at it. He’s listening. Then, if you have any questions about Caleb, as you probably do, ask me. I would be more than happy to answer them.
Caleb is fortunate. He has an extended circle of friends, family, and many others that value his place in their lives. His relationships are like any other…reciprocal, mutually beneficial, enriching for everyone. We all learn from one another in our relationships, and Caleb’s relationships are no different.
I wish everyone could see that and not picture his life as merely a burden to be dealt with. But, when I see the behaviors I abhor displayed on a national stage, I certainly am not reassured that when I take Caleb out into our communities he will be graciously invited to be a part.
Has it gotten better? Absolutely. Should we let those still-too-frequent awkward and offensive interactions define Caleb’s social life? Absolutely not.
We will still go out. We will still endure the stares, the not so whispered comments, the pity and the praise. We will still go and get out there because we have never been willing to let Caleb be defined by anyone else. Because our work, all of our work, asks that we keep showing up, speaking out, and creating a space for others to re-imagine the value that exists in all of us. And to re-imagine the joy it is to be a parent of a young man who smiles and fights and jokes and plays…and who also happens to have a disability.