Katherine (Beanie) Breen-Kurucsev: The Snowdrop

We all grew up together on Avoca Avenue. Our families were and still are closely knit. So when one of us succumbs to the effect of terminal illness it affects us all. The effects are greater when the death is that of a childhood friend whose life ended just as I thought it was only beginning. Although 42 Katherine was always in my mind the little girl sitting on my father’s knee being consoled because the boys didn’t ask her play football, or the little girl who used to come in the early morning to fish the goldfish out of our pond, my father being the only person who knew why the goldfish kept disappearing -the tranquillity of innocence that was Katherine.  Death in your 40s is just not fair. Isn’t it meant to be still a millennium away? Why was she destined to die so young?

The past few weeks for Katherine’s family and friends have been numbingly tragic. So many emotions, grabbing at hope only to be replaced by despair.  And yet it seems that only over the past two or three weeks have I really known Katherine.  About three weeks ago she was informed by her doctors in Australia, where she had lived for the past 15 years with Nick, her husband, she only had a few days left in this world. She made the decision that she wanted to return to Ireland to spend her final days at home with her father and mother. Her amazing family rallied together and they made it happen.  After a gruelling flight from Australia, accompanied by doctors and nurses, her husband, her Mum, and brother, Katherine arrived back in Ireland on the 8th February.

Last Saturday, my mother called me to say she had said goodbye to Katherine, an experience she said that will never ever leave her mind.  Katherine was asleep like an angel, the tranquillity of innocence, her ever attentive brother Nicholas at the foot of her bed reading to her.  Katherine had borne her burden. It was time.

In was 1993 when Katherine came to stay with me in Hong Kong, on her way back to Ireland after an extended holiday in Australia.  She was feeling uneasy…  We talked. She told me about Nick, that she loved him, and already missed him. I told her to go back if she loved him. She did.

Soon she was making a name for herself in the local communities of Ballina and Lismore, New South Wales, her new home. A highly competent and professional journalist, media and promotions officer, she wrote with an honourable conscience for several local medical publications covering the Northern Rivers Division of New South Wales.  A cursory glance at the titles of the articles she wrote over the years show the true measure of Katherine’s kindness:  “Preventing youth suicide through community adhesion”, “Caring for the carers, “Separation from birth – the story of one rubella damaged child”, “First Aboriginal doctor for region”….. and more

She continued to write on all sorts of medical issues knowing her word would bring comfort or raise awareness among her avid readership, all the while conscious that the cancer was still loitering in the background.

Katherine’s bravery is her inspiring legacy. Last year she set up a website: http://www. advancedbreastcancersupport.info Advanced Breast Cancer Support, for those with advanced breast cancer and their families.

I have just looked at the website, and read the following, as written by Katherine.

“About the snowdrop motif

I chose snowdrops to be the motif of this website partly because they are my favourite flower, but also because of the hope they signify.

It does not matter how harsh the winter, or how hard the ground, this seemingly fragile flower will always appear in its little clumps in gardens everywhere and sometimes in exquisite drifts, a harbinger of spring and a new beginning.

This small, tough and extraordinarily beautiful flower signifies hope, and also consolation (which we all sometimes need), and it seems an appropriate symbol for those of us with advanced cancer and our families and friends.”

She had borne her burden.  In death there is beauty.

We are bounded by memories, which death will never conquer.

Rest in Peace Katherine.

Katherine (Beanie) Breen-Kurucsev: The Snowdrop

Words matter: Mentally retarded or human gift? Looking back at the 12th Special Olympics World Summer Games in Shanghai

Growing up in 1970s and early 1980s Ireland I remember the labels “mentally retarded”, “mongolian”, “mongol” and “mongoloid” being used in casual conversations when referring to people with intellectual disabilities, or Down Syndrome. I plead guilty to pronouncing such stereotypes. By condoning or even saying such humiliating remarks, unknowingly I was in effect robbing people with intellectual disabilities of their individuality and dignity.

Such degrading descriptions of people with intellectual disabilities have been cultivated over many years:

  • P.M. Duncan noted in 1866 a girl “with a small round head, Chinese looking eyes, projecting a large tongue who only knew a few words” in ‘A manual for the classification, training and education of the feeble-minded, imbecile and idiotic. London: Longmans, Green & Co.
  • John Langdon H. Down (1828-1896), an Edinburgh physician, published in 1866 the first clinical description of individuals with Down Syndrome that bears his name in the landmark paper, ‘Observations on ethnic classifications of idiots’.
  • Benjamin Spock suggests in ‘Baby and Child Care (1946)’ that babies born mongoloid should immediately be institutionalized based on the premise that “If (the infant) merely exists at a level that is hardly human, it is much better for the other children and the parents to have him cared for elsewhere“.
  • The theologian Joseph Fletcher attempting to comfort a bereaved parent, concludes in 1968 that there is “no reason to feel guilty about putting a Down syndrome baby away, whether it’s ‘put away’ in the sense of hidden in a sanitarium or in a more responsible lethal sense. It is sad, yes. Dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down’s is not a person.

Words matter!

Imbecile, idiotic, hardly human, retarded, not a person..?  No way!

Why the Beijing 2008 Olympic Games contestant will never match the spirit, resolve and strength of mind of the Shanghai 2007 Special Olympics World Summer Games athlete?

Held in Shanghai from October 2nd to October 11th, my colleague and I attended the Games as volunteers hoping to be of some assistance to the 151 member Irish team, their euphoric family members and the 200 volunteers who had fund-raised over €1,000,000 for Special Olympics Ireland.

Looking back on that week I can honestly express it as one of the most heartening, and touching experiences of my life.

Vivid memories:

  • … The ‘Team Ireland’ hotel, the Equatorial. If I hadn’t of known about the Special Olympics I would be forgiven for thinking I had by chance walked into the Shanghai leg of the world’s most famous rock group on tour. The atmosphere in the lobby was electric, noisy and very cheery. And who was making all the clatter? The families of the Irish athletes. Hundreds of family members and volunteers had flown in from all over Ireland, Australia, New Zealand to support their Ruth Gribbon and Pauline Rush in Bocce, James in the Basketball, and Sarah in the Athletics.
  •   … The spectacular Opening Ceremony wasn’t just about huge fireworks displays, and appearances by celebrities Jackie Chan, Colm Farrell, and Arnold Schwarzenegger, as Shanghai, with the Beijing 2008 Olympic Games less than twelve months away, sought to display its organisational prowess. The true symbolism of the night was the picture beamed to almost every household in China of President Hu Jintao hugging and playing with Down Syndrome children. 
  • … The scenes of jubilation after Ireland’s basketball team at 4 points versus India’s 18 slam dunked to go to 7…. It was as if they’d just scored the winning point in the world cup final. Spine chilling and poignant indeed…. Such jubilation… Yep, that’s what sport is all about. They were having fun no matter what the score was.
  • … The barefooted 1,500 metres athlete #9, running in the yellow colours of Tanzania, who literally danced around the outside lane of Shanghai’s Olympic Stadium and then stopped to wait for his fellow competitors to catch up with him. When he finally crossed the line in first he just kept running, enjoying himself immensely as stewards and minders tried to catch up with him…
  •  …“I know I can”. First or last it didn’t matter, all the athletes finished walking or running around this 400 metres Olympics track. Their single-minded focusr on crossing the finish line, and competitive it was. Team Ireland’s Sarah, #4 in the women’s 1,500 metre walk, briskly walked around the track as if she was going for a breath of air with her dog such was her look of she enjoyment. Not one of the athletes dropped out.  It was a sight to behold, never to be forgotten.
  • … Making friends: A Danish athlete swapping badge pins with her Irish athlete counterpart, spur-of-the-moment stuff. This was their stage and they were thoroughly enjoying it.
  • … The devotion and enthusiasm of each Chinese volunteer assigned to an athlete as a minder. The clearly genuine amity between the two for me really captured the power of the Special Olympics spirit. Despite the enormous challenge of convincing China’s populace at large that the intellectually disabled are able to lead a happy life and contribute to society these volunteers in my mind have really shown the way.

And so much more…..

For anyone who has never been to one of these momentous events, it is worth the time and effort to appreciate the extent of human potential and to recognise that each unique human gift has a place in society.

Words matter!

Witnessing the social and cultural transformation of the underserved and often marginalised intellectually disabled as I did at the Games in Shanghai certainly made me feel ashamed, very ashamed.

Imbecile, idiotic, hardly human, retarded, not a person..?  No way!

Appreciating the value and importance of including people with intellectual disabilities into all aspects of life, I look forward to the next Special Olympics World Summer Games, which will be held in Athens in 2011.

[Note: The previous 11th Special Olympics World Summer Games held in Dublin, Ireland, in 2003 was mired in controversy even before the Opening Ceremony following the Irish Government’s banning of the Team Hong Kong’s participation due to worries about SARS. An outraged Niall O’Reilly decides to write two letters highlighting the Irish Government irrational and hypocritical decision…. To read more click: https://nialljoreilly.com/2007/09/21/special-olympics-world-summer-games-shanghai-october-2-11-2007/ ]