So Little and So Huge

Up to three years ago, I was living in a very cosy little life. Of course I knew that my environment was going to change because grand-motherhood was approaching, but how different could that be from the “same-old same-old” habitat I had known for so long. I had lived through many experiences, acquired a wide ranging knowledge, seen and heard a lot, taking on board some ideas and putting others aside. In my mind, I thought I was “wise” and all I now needed to do was enjoy this wisdom.


And then, on the 10th March 2008, Cathal joined our family. On that day, our lives took a little boat trip, but we did not reach the shores we had anticipated. Instead, we stumbled onto a new world, stepping on shaky ground, in total shock, in tears, in pain, in anguish. To say that Cathal’s diagnosis of Down Syndrome and of Congenital Heart Defects took us totally by surprise would be an understatement.


Personally I knew next to nothing about Down Syndrome. My initial reaction was more of concern regarding the immediacy of Cathal’s heart condition. And the following 16 months had many traumatic moments that I will never forget. But the under-lying presence of Down Syndrome gave me the springboard for a shift in my life priorities.


Yes, Cathal has Down Syndrome. So? He may take more time than other children his age to understand some things. His little body may not be ready at the same time as other children’s to acquire some skills. But he will understand them, he will acquire them, in his own time, at his own pace.

Cathal is teaching me patience, because I cannot rush him.


Yes, Cathal has Down Syndrome. So? He has it in him to do whatever he is capable of doing. I is simply a question of giving him extra opportunities to discover his abilities than with other children: creating an environment, promoting a potential to allow him to grow as far as he can.

Cathal is teaching me faith, faith in him as an individual, faith in his own, personal, abilities.


Yes, Cathal has Down Syndrome. So? He may need to work a little harder than most to achieve, but when he does achieve, no matter how small this achievement may be, the joy we feel is all the greater.

Cathal is teaching me appreciation, of simple joy in the smallest things.


Yes, Cathal has Down Syndrome. So? He has his own strong personality, full of goodness, full of love, full of tenderness and gentleness, full of strong opinions, full of courage, perseverance and determination.

Cathal has taught me that he IS not Down Syndrome, he IS himself, and just happens to have Down Syndrome, just as I have green-brown eyes. He is him, as much as I am me.


Before Cathal joined our family, I thought that I did respect all people. I have since realised this was very much a generalisation, on the surface. The way his parents faced the events following his birth, the courage and determination they showed so quickly to do everything in their power to fight for him, courage and determination that is now manifest daily in all the small but necessary gestures they do for him, make me feel very proud of my daughter and the Dad.

And because of Cathal, I have in the last three years come to know so many people from the wonderful world of Special Needs and Disability, some of whom I now call my friends. Every one of them is Special in his or her own way, but most of all they are special to me because I can in confidence accept them and respect them simply for who they are.

Cathal has taught me the true sense of Respect for others.


3 - 21: On this World Down Syndrome Day, I am celebrating the huge and fundamental changes an extra little chromosome made to my life. I am celebrating my love for a most wonderful human being. Cathal, I would not change you in anyway, you are the most perfect grandson I could have ever wished for. Thank you for being you.

3 * 21 – But Where Are They?

Today, 21st of March, is World Down Syndrome Day, a day that:

aims to promote awareness and understanding of Down syndrome and related issues: and to mobilise support and recognition of the dignity, rights and well being of persons with Down syndrome.

3 * 21. 3 of chromosome 21. Who ever thought of using this date was quite clever. And it is only right to raise awareness of what is Down Syndrome, or Trisomy 21. To demystify it, to put forward facts, to show that people with DS are just that before anything else: people.



But then, why are they so invisible?

Last January I was prompted about a series of 3 programmes on the UK Channel 4 that stepped outside the norm: “How to look good naked – with a difference”.

Now, I am not much of a fan of Gok Wan: though I like his ideas, I find them simple and quite interesting, the man simply annoys me tremendously. For some reason he gets on my nerves, and until that particular series came on I had never been able to watch a full programme.

In this case, I not only stuck it through the first episode, but found myself waiting for the next two. He applied the formula of his tried and tested show “How to look good naked” to a woman in a wheelchair, a woman with a prosthesis leg, and then most interestingly a blind lady. This last episode was obviously a real challenge, for how do you “show” a blind person what she looks like, and not only give her a sense of how people see her, but also of how to present herself? I must say I found the programme very moving, and was almost cheering at the end when the woman walked down the catwalk in full knowledge of her appearance and thoroughly enjoying the applause she was getting.

Apart from the theme of each episode, and the fabulous results in terms of regaining self-esteem that each woman obviously achieved, there was a secondary theme running through: why do High Street shops and brands never show people with disability in their advertising campaigns? The argument put forward was this: it is a fact of life that people with disability exist, that they form part of the customer population. Not showing them is a form of discrimination. So he engaged the help of 2 women in wheelchair to design a poster campaign and prove that a disable person can be a model and represent a brand as much as an able bodied one.

And to be fair to Gok Wan, or the producers of the series, one of the models travelling the catwalk with each of the participants was a stunningly beautiful woman with an amputated arm, in full view. Hence the man does acts on what he preaches.

Following on this he launched a petition destined to high street retailers in the UK to engage disable models in their advertising campaign.

This is interesting of course. Any thing that can move anyone towards inclusion of the “different” is welcome. But the whole emphasis seemed to be on the physical disability. What about the intellectual?


Has anyone seen an advert for any product or service featuring a person with Down Syndrome? Apart from the posters for the Special Olympics, or the current TV campaign for the AIB Better Ireland sponsorships, I personally have never seen any such person in what I would call mainstream advertising.

Why is this? Down Syndrome by the very nature of its manifestation is the most easily recognised form of intellectual disability. So, where are these people? If one in about 750 has DS, shouldn’t they be more visible?

I am not so naïve as to ignore the fact that people being portrayed in any advertising campaign, because they are “the face” of a product or a service, need to look beautiful and healthy. But, as an example, my little prince Cathal is beautiful. And right now he is very healthy. Having Down Syndrome does not negate health. Having Down Syndrome does not negate beauty. In fact I have often been moved by the incredible beauty I have found in some of the photos of people with DS I have had the pleasure of seeing over the last two years. Yet, before this, would I have stopped and looked? Would I have allowed myself the chance to be moved thus? Probably not.

Having said this, I am as guilty as anyone else for keeping DS invisible. Last year there was a campaign launched by Calpol for finding a new face for the product. I fleetingly thought that it might be a good idea to enter Cathal – ok, I am biased, and I am repeating myself, but he is a beautiful child! I even briefly mentioned it to his mammy. At the same time, deep down, I knew that, should he be entered, he would not stand a chance, he would not make the first cut. A glance at his eyes, and the photo would be put on the “NO” pile. There was no point of trying, as who would choose a toddler with DS to represent a product that is supposed to make children feel better? The child on the product packaging needs to show health, happiness, wellness. No one wants to see the face of a “problem” on their product.

Yet, guess what: one person in about 750 has the face of that “problem”. And that person, as much as you or I, is part of our society, part of what it is to be human, and let's not forget: also a consumer...

Happy 3 * 21 Day!