Monday, November 14, 2011

Sadly, Only I Was There

Sadly, only I was there.

In line behind a young man with Down Syndrome in Tescos cafeteria in Conwy. Upon seeing him, the woman serving behind the counter called out his name, welcoming him back. She said that she hadn't seen him for a while, asked if he'd been cheating on her and going to ASDA instead. He laughed. Then she asked.



"What have you been up to these days."



He talked about what he was doing. He talked about how busy his life was. He joked with her and she with him. Nothing special. Just a regular conversation.

A conversation that should have been overheard by some random geneticist, some scientist working to free the gene pool from abnormalities and differences. A conversation that would have challenged the assumptions behind the science. A conversation that would have given the lie to the idea that a geneticist is doing public good by the prevention of the tragedy of difference and disability. Yes, it was a conversation that should have been overheard by someone other than me.

Sadly, only I was there.

Rolling down the aisle of Sainsbury's, picking up a ready meal for dinner. My bag at the back of my chair growing fatter and fatter by the moment. We have little time between stops to do anything but pick up stuff at grocery stores. We cook in our room at night. Avoiding restaurant fare and therefore restaurant bills, we use a steamer to heat up food while we ready ourselves for the next day. So, I'm in places where there are lots of people just living their lives. And she was among them. Alone.




Shopping, picking up items, sometimes comparing one against the other. Totally absorbed in the ordinary act of living. Doing what was thought impossible. She should have been seen  by some random doctor, who routinely, acting on data not only a thousand years old but data that was wrong even then, tells a parent of a newborn with Down Syndrome that their is no hope for an independent future. A doctor who will tell parents to put hope aside, who will hint that their life is as damaged as their child is perceived to be. A doctor who will go home and have a quiet supper, unconcerned that his mythtake will cause tears, unnecessary tears to be shed. That doctor should have seen her. Should have been challenged by her independence. Should have been brought up short by her need for no one but herself. Should have been made to reconsider exactly what he knows. Yes it was a sight that should have been seen by someone other than me.

Sadly, only I was there.

Sitting having a cup of tea in a Costa's on the M5. Joe had gone off in search of a couple of slices of pizza at a Pizza Hut that was snuggled up against a McDonald's. I was going through the messages on my Blackberry, keeping up to date with work. Then, finished, I sat back in my wheelchair, and looked around me. To my right were a couple of people reading newspapers. One of them saw something and lowered the paper to say something to a woman, I'd guess was his mother. He pointed at an article in the paper, she leaned over and read the headline and laughed. He grinned at her. They went back to their papers. He should have been seen by some random school principle who still believes that mainstreaming has damaged education and that 'they' can't learn. He should have been seen by some education guru who bemoans the resources gobbled up by kids with intellectual disabilities. He should have been seen by those, by any, who believe that difficulty with learning means no learning at all. Yes, it was a moment that should have been experienced by someone other than me.

Sadly, only I was there.

Looking in the mirror in the disabled loo at Heathrow. There looking back was a disabled guy, holding on for dear life to a couple of bars, swinging his big butt into his waiting chair. Yes, that guy in the mirror, should have been seen by all who believe that those with disabilities live sheltered lives. Who believe that one is confined to a wheelchair. Who believe that outside that toilet door is a hospital, or a ward, or a day room - who would not believe that outside that door was the world, was possibilities, was purpose.

But only I was there.


Kristin said...

So poignant...I wish I had something profound to say but all I can do is wish someday all will see what you were witness to.

Displaced said...

Dave, you see with insight others sadly do not possess.

My Girls R Angels said...

Thank you so much for another wonderful post! There are many in our community who would enjoy reading this. I would love to share it.
Rockledge, FL

rickismom said...


Cole said...

But rest assured that even though you were the only one there, there are so many of the families out here who will make sure that others see what you see. So lovely Dave. xoxo

Lauren said...

I love the sentiment of increasing awareness and knowledge of everyone, but find this post slightly offensive from the standpoint of a scientist in the health field. We DO see this and without our hard work many disabled people wouldn't have the tools they need to achieve independence. You should be targeting the mindset...not the profession.

Tamara said...

@Lauren - I think he was targeting a specific mindset when he said "working to free the gene pool ..." I don't think it was a a generic negative statement about scientists.

Thanks, Dave - especially loved this one.

theknapper said...

And you shared what you saw and remind us to really see what is possible.

Charles said...

Thank you for your well written tear provoking piece.

I recognize this feeling.

When my 3 yr old daughter with DS tells her big sister "let me do it," i wish her speech therapist was there.

Maybe we should all videotape these moments with out 'smart' phones and post them all in one place.

LiveWorkPlay said...

In the doc film "Monica & David" the couple (both are people with Down syndrome) are not "allowed" outdoors because society is too mean. There is a short scene towards the end where they are "allowed" to use the spa pool at their condo and they meet a stranger from Boston (they are in Florida) and proceed to have a lengthy conversation about sports - a real human conversation. It's nice that we can "all be there" because its on video :-)

Tara said...

My husband recently watched a man with Down syndrome pull up to the gym in his red sports car, jump out wearing his work out gear, and walk inside to start his routine. It spoke volumes to him about what is possible for our 2 yo son with Ds. I think people with disabilities just living life are the best advocates of all.