Monday, June 13, 2011

When people put social norms before humanity

I work with a lovely social worker named Laura. Her husband Keith used to work at the Globe and Mail, with my husband D'Arcy. Keith and Laura have two amazing kids: Connor and Bryson. This weekend the family had a painful experience during what should have been a happy occasion: a night out at a new restaurant.

During their meal, a staff person came by to ask the parents to keep their son Bryson quiet. Apparently, patrons at the other tables were complaining. Bryson, 5, has a rare genetic disorder and communicates through "songful, deep-throated vocalizations," says his dad.

"We were flabbergasted," writes Keith on his blog. "We pointed out what we thought was obvious – that Bryson has severe mental and physical disabilities and that we can’t just tell him to be quiet."

Read about how the night unfolded at My Father's Day Pledge.

And let us know if you've experienced times when people have attemped to 'silence' or in some way reject or ostracize your child in a public place because of his differences. Louise


Dearest Louise,

Every time you throw caution to the wind, in an effort to tackle yet another issue, I don't know whether to embrace you in friendship or shield you from any answers which are to come. Nonetheless, I am utterly aware of the fact that neither D’Arcy nor I can stop you; so I find myself thinking, "Sometimes, the only way to help and protect those you love is to fight alongside them. After all, 'We are writers, and the pen is mightier than the sword."

I was ten years old when my Father took me to a Greek restaurant for the first time. I remember this day as if it were yesterday. I took a bath, got dressed, and gelled my hair --it was "Mint", as I use to say. I was finally going out with dad. Could a boy ask for anything more?

"I'm riding shotgun!", I excitingly proclaim on my way out the door. My Dad helps me get into the car. We roll down the windows and blast the radio. No words need to be said, as I am bopping my head to the music.

We finally reach the Danforth or "Greek town" for those living in Toronto. Here my Dad is king, as he knows everyone and everyone knows him. There is no waiting in line, waiters are only seconds away, and the term 'closing time' doesn't apply to you. But, no one has ever met his son -- the boy who walks with crutches. Come to think of it, "There is no Greek word for disability." The closest translation that I can find or am aware of is, "He is backwards or has a problem."

We finally get out of the car. My Dad opens the door to the restaurant and we walk inside. I am still blissfully oblivious to his conflicting emotions: acceptance and rejection, compassion and intolerance, love and embarrassment.

Halfway down the corridor, between the entrance and the tables, my Father leans forwards to whisper into my ear, "Stand up straight. Don't fall. Don't embarrass me. I love you."

Twenty-three years have come and gone since this bittersweet summer day. I love my parents and have never spoken of this to my Mother. For, I have always understood the strain my disability has placed on their marriage, as well as my Father's heart. Is this partly why my Mom pursued the most aggressive treatments while advocating for absolute inclusion? "I believe so." We are all to blame. We are all far from perfect. I would have done anything for the illusion of normalcy and my Father's love.

Some people say, "Marriage is forever, and that a parent's love is unconditional." I just wish we could have done things a little differently.

I can still feel the wind in my hair and the tears on my cheeks.

Forever yours,

Matt Kamaratakis

Matt, this response is so moving and so beautiful. Thank you so much for reminding us about the internal stuggle that exists within every parent of a child with a disability - the desire to accept difference and the desire to be accepted.