23 August 2009


What an experience I have had in the last 3 days as I attended the World Down Syndrome Congress in Dublin! I will not be able to do it justice in one single post, but I wish to convey here the two foremost impressions I have taken home with me.

During the opening ceremony, May Gannon (who works with Down Syndrome Ireland, whom I have had the pleasure to meet several times, and who is the person who rung me and asked me to chair the Grandparents session last Thursday) highlighted a point which made a lot of sense to me. In essence she defined Abilities and Potential as follows:

- Ability is what I can do now
- Potential is what I will be able to do, given the right environment and circumstances

I know that this is true of everyone of us, DS and no DS. But this got me thinking about what is especially important where the extra chromosome 21 is involved, and in particular who has which responsibilities:

- It is Cathal’s responsibility to use his abilities to the full.
- However it is the responsibility of all around him, and in the first instance family members, to ensure that the environment around him, and the circumstances in which he lives his life give him the potential to discover and develop his abilities. This includes me.

Following on this, my second impression is that of a much deeper understanding of what having respect for someone means. Over the three days I have witnessed some very strong and emotionally charged moments, I have met some incredible people, and I found myself feeling very humbled by them. My sense of respect for others has deepened to a level that goes far beyond the appearance, far beyond the knowledge of what people might have done or achieved, but seems to touch on the very essence and beauty of what it is to be a human being. For once, words fail me, I cannot quite express the awareness within me, and the emotions that accompany it. However I know that there were several moments that may qualify as “defining”.

Of all the people I heard and met, I will talk of the family members and the professionals at another time. Those who touched me the most, and brought this new understanding in me, all have Down Syndrome. To mention but a few (and in no particular order):

Emmanuel Bishop, a 12 years old boy, who had the courage to stand on the stage of the Mahony Hall in the Helix, and play the violin in front of an audience of over 900 people.

A young woman (whose name I did not write down and can’t remember now, dam it!), who was one of the ambassadors. The main role of the ambassadors was to stand at the podium in front the same audience, during the plenary lectures every morning, and each would introduce a speaker. This young woman walked to the podium and said “before I do what I am supposed to do, I want to say something” – the last speaker had given an update on research into Hearing and the importance of correction, as well as an outline of the various methods currently available. She went on to state that she agreed with the last speaker, that hearing properly was critical in the life of people with DS, and that we should all remember that one cannot communicate properly if they don’t hear properly. She then thanked her parents for making sure she could hear. And, with an ease that made me very humble indeed, she said: “I thought it was important to say this. Now I’ll go back to what I have to do: my name is --- and I would like to introduce to you Prof ---”.

How many of us would have had the aplomb and the courage to interrupt such official proceedings and give a personal opinion, with as clear and concise language as she did? Respect, indeed!

Karen Gaffney, who was one of two speakers giving the Plenary Lecture dedicated to literacy, and spoke ad lib (yes, without notes, I could not have done that!) of her love for reading, of the enjoyment she gets from reading such diverse authors as JK Rowling, William Shakespeare (Much Ado About Nothing being her favourite play) and most of all her favourite author Jane Austin. As a conclusion to a very structured speech, her last message was to keep an open mind: “Who knows, your child might one day read Hamlet and love it!” (to learn more about her, click here).

I had the honour of meeting young Scottish man, whose name escapes me (my memory of names is very deficient, if I don’t write them down immediately, they are gone for ever!), and we had a great conversation about travelling. We ended up listing and comparing which countries we had visited, and he beat me hands down. It was so enjoyable, he made me dream, and my feet got all itchy. He reminded me that I often wish I had enough financial independence to quit work, hop on a plane, and go where ever the fancy would take me. But he also made me see that discovering the diversity of our planet starts at home, by discovering the diversity of humanity around us, something we often forget.

I also had the honour of meeting Dylan Kuehl, from Washington State in the US. Cheri had posted about him some months back, I had gone on his website before (click here) and loved his paintings, one in particular – and yes, I did purchase a print of it! Dylan claims to be unique, like every one of us, and indeed the conversation we had about his art proved that. Again, I was so humbled, as I cannot for the life of me draw or paint – my hand writing is so bad that I am the only one who can read it, and if I take notes for someone else, I type them to make sure they can be understood. So Major Respect here!

I was privileged to witness the very slick presentation of an extraordinary young man, Sujeet Desai - slides, videos, talk, and live examples of his talents. Sujeet is an accomplished and professional musician (violin, piano, clarinet, sax, and drums, as well as a composer), a Special Olympics medallist (he is involved in swimming, skiing, and Taekwon-do), he draws and writes poetry, he is about to do his driving test, he is married… listening to him, and meeting him later on, I wondered what the word “disability” actually meant??? Go on his website and see for yourself.

Last but not least, Luan (again, I can’t remember his surname. Sorry!) who addressed participants during the closing ceremony. Luan is a Self-Advocate. As a member of the Board of Down Syndrome South Africa, he invited all present to join him at the next World Congress in Cape Town in 2012. Considering his mother tongue is Afrikaans, his presentation in English was absolutely superb, and the event so tempting.

My birthday fell right in the middle of the Congress, and the people I mentioned above have given me a great gift to start another year: a better understanding of what true, unconditional Respect is all about.

Right now, I feel all “congressed” out, and am very glad I am flying off tomorrow for a week in the sun. If anything, I need to reflect on all I heard and saw.

PS: if you are wandering why I do not have any photos on this post, the reason is very basic: it would be very disrespectful of me to put on the net photos of people without their agreement, wouldn’t it?
See? Respect!


Colette said...

Beautiful written and thank you for giving me a glimpse of your wonderful experience.
I missed attending the congress on friday as planned; as we got an cancellation to attend Declan's ENT consultant. We'discovered that he currently has only 20% hearing and will hopefully be rectified by grommets - anyhow i thought it was ironic considering the young lady's contribution.
Please feel free to contribute anymore snippets you remember as i've so much to learn.
Thanks again

Jeffrey Goble said...

Yes. Thank you. Yes.

Clive said...

A brillant post!

Very well expressed!

Hope you have a fabulous holiday!

Take care
- the little man's mom

Mel said...

Thanks for sharing Nan P. Did you meet anyone from New Zealand there? I had my spies on the lookout for you!

Mel :)

jazzygal said...

A lovely and very informative post Nan P. Thanks for sharing all this with us. I was enthralled and loved hearing about the performances of the very talented people. I'm sure your own speech was wonderful too! Well, if it's anything like you write then it's bound to have been brilliant!

have a fab, fab week away. xx Jazzy

Anonymous said...

Your young man from Scotland must have been either James Withers, or Stuart Campbell.