Monday, August 24, 2009

Moments from the Congress

We fly back to Toronto from Dublin today. The 10th Down Syndrome World Congress is behind us. We spent our one day off driving along the water marvelling at the sheer beauty of the Irish coast. We chatted about our week here and the many moments we had. I thought we'd share some with you.

Moments: The Funniest

On our first day here in Ireland we stopped at a mall where there was a post office. Joe ran in to get some stamps for postcards to send back home. I sat in the rental car and waited for him. At some point I rested my head against the headrest and then something caught my attention and I turned. As I did so I noticed a delightful little tugging as my hair caught in the material of the headrest then tore free. Soon I was sitting with my eyes closed and turning my head slowly from side to side feeling the pull and release, pull and release of the hair on the back of my head. Suddenly I got the feeling someone was watching so I opened my eyes to see an angry looking woman pulling her mobile phone from her purse. She was staring at me. I smiled. She said, 'Are you alright?' I said that I was. Turns out that she had thought that I was a severely disabled man 'stimming' in the car left by some careless 'carer' and she was about to phone emergency services. When Joe got back I told him that he had just barely avoided jail time in a Dublin cell.

Moments: The nicest

I spoke with several parents about how and when to tell their children about the fact of Down Syndrome. One mother talked to me for a long time, mentally taking notes as we chatted. She came back the next day almost glowing. She had to tell me that she had taken my advice and had gone home and had 'the talk' with her son about his disability. She said that she had done it just as I had advised, that it had been an uplifting experience rather than a crushing one. So often I meet and talk with people and have no idea if it matters. It was nice to know it mattered. It was wonderful to know that - if nothing else was achieved - a family was helped.

Moments: The scariest

Sittiing on stage in front of people from around the world being asked to give a 12 minute 'mini-keynote' on sexuality and people with disabilities. From the moment I realized it was only 12 minutes I tried to figure out how to say anything of import in that time. I felt the time ticking down as there were several 'mini-keynotes' before me. I had time to notice the huge audience. A thousand people looks exactly like you think a thousand people would. I had a little notepad in front of me with 4 stories to tell. I kept changing my mind about which to try, trying to guage time. When it came my turn I openned my mouth and was surprised to hear myself say, as I hadn't planned it, 'I have 12 minutes on the topic of sexuality, all the men here are trying to figure out how I'm going to do that, all the women are thinking, 'what's he going to do with the other ten minutes'.

Moments: The warmest

A young woman with Down Syndrome asked to speak to me privately. We went off a bit and she bowed her head, preparing to speak. She looked up at me and put her hand over her heart and said, 'Thank you. I am stronger now.' Her eyes welled up with tears. I remembered her from my workshop, I remembered her struggling to say 'no' with assertion, I remembered her anxiety in being in front of others doing a role play, I remembered her triumphant finish. I said, 'You're welcome. You made me stronger too.' She understood. Who ever said these kids were dumb?

Moments: The saddest

Rolling out of the Congress on the final day. Feeling good about the work done. But feeling sad that the community we'd created, here in Dublin, was slowly dispersing. It was heartening to know that we all individually had the power to make changes to the larger community - yeah, true - but it was nice for it to be 'just us' for a little while.


Glee said...

I laughed heartily at yr funniest one and thought your scariest was pretty damn funny as well.

Glad it was good.

I never got "the talk about my disability" when I was a kid. It would have been so empowering. Do u have an explanation of what "the talk" might cover please Dave?

MoonNStarMommy said...

And your message will be spread past what you can even imagine, every person that you touched deeply will tell their family, their friends, their support systems how you did so.

I went to a Genetic Disorder conference in San Antonio in 2004 (World Congress on Rare Genetic Abnormalities - or something to that effect) ... and I remember what an impact it had on MY life. My son Noah (who is 7 now but 2 at the time) has an extra 16th Chromosome in some of his cells - but not all of (Mosaic Trisomy 16) was the reason I went. I was told when I was pregnant he wouldn't live, and if he survived birth he'd die shortly after, and if by some miracle he came home, he would have no quality of life because he would be so mentally and physically disabled it "wouldn't be worth it" and the genetics DR suggested that I "interrupt" the pregnancy. It took me a few moments to realize he meant have an abortion. I looked at that DR and I told him, "I am sorry, but that is not an option" ... I vowed to love that little boy that was - at the time - kicking inside me - for however much time I was blessed to have him. If it be a minute, or years. I just wanted to things, to hold him alive, and to hear him cry. I've gotten to do both almost on a daily basis for the past 7 years (he's a drama king, everything upsets him) ... you wouldn't know there was anything wrong with him just by looking at him.

Anyway - now that I've bored you.. lol... Thanks for stopping by my blog :)

MoonNStarMommy said...

oh and PS ... I'm quite jealous! I want to go to Ireland!!

Lisa RM said...

Conferences are great for reminding us that we're not alone in the world, whatever our niche is. The tough part is going back out and facing the rest of the world while still remembering that we're not alone.

Glee said...

MoonNStarMommy - there is nothing wrong with Noah. He is your great boy and don't you listen to the prophesies of the bloody doctors. Doom n gloom is all they say and as a person living with disability and 52 I have had enough of it.

You have gone with your heart and striven with Noah and here you are.

It makes me smile. Go us all!

Anonymous said...

The best thing on the congress:
Thank you very much for all your words.

/ Lasse from Sweden (up on stage one time)

Anonymous said...

Heartfelt thanks for your contribution to the congress. I feel empowered, by you and your inspiring lectures, but most of all by the feeling of belonging, the sense of community. I carry this feeling with me and look forward to the day when my daughter with DS and her older sister will be old enough to come along. I am sure they need to be empowered too.

All the best,

Malin Dareberg (Sweden)

Wishing 4 One said...

What a wonderful round up of the conference. You really impacted so many, and I am sure every time you speak it matters.

Kristin said...

I think the scary moment vied with the car moment for the funniest. The nicest and the warmest both madde me smile.

Tamara said...

I'd love some instructions on "the talk". My son doesn't want to hear it.

CJ said...

Being physically disabled doe not = intellectually disabled.

Sharon said...

I've attended the last two National Down Syndrome Congress Conventions and felt the same way on the last day.....sad at leaving the community of the weekend - where seeing people with Down syndrome was the norm.

Anonymous said...

I'd love to know more about "the talk" as well. Can you point us toward a good reference??