OPINION:I have survived and my life is ordinary . . . ordinary despite a painful history of incompetence, neglect and disgrace by my country, writes MARY DUFFY
ALMOST TO this very day, 25 years ago, together with Maggie McFadden (now Woods), I wrote a letter to this paper, seeking for the first time to meet other thalidomide survivors.
We even went on the Late Late Show. We created quite a stir. I was quickly labelled wild, untamed and ungrateful, a badge I still carry with pride today. Despite the wide coverage we got one response to our call to meet up and celebrate 25 years of thalidomide, and that wasn't even from a thalidomide survivor living in this State.
And now, as we approach our half century we find, to everyone’s surprise (especially our own), that we are still here. Maggie and me might have given up on celebrating 25 years of thalidomide but we are still talking, laughing and trying to negotiate and understand our lives. We are growing older with grace and with courage, but with not a lot of conviction. Our needs are more urgent and the response from our Government, even after 50 years, is still one of intransigence and ignorance.
This is really nothing new for me. All my life, my needs as a disabled person have been overlooked, ignored, not provided for (because “Mary Duffy, you are so able”) . . .
As well as denying a fundamental part of my experience, denying my disability creates in me a deep confusion, especially when such comments are delivered as if it is some kind of triumph and that to suggest I really am disabled would be a great failure, a real defeat.
I know now that I am capable, confident, competent and disabled. But as a child I felt contradicting the assertion that I was “not handicapped” meant institutionalisation and separation from my family and community.
As an adult, my experience of trying to access services in order to meet my needs in relation to my disability has never been easy. It has always been very challenging, often crushing and hugely disempowering.
Life has straddled the knife-edge between self-reliance and exhaustion. I am conflicted by a reluctance to ask for what I need, because I can’t bear the pain of being refused.
And so my life experience of being refused leaves me sensitive to feeling excluded and rendered invisible. And this is exactly how I feel now in response to the current proposal from Mary Harney. Her revised offer of compensation opens a deep wound and sticks the knife in: "Government offers €2 million to 32 thalidomide victims" – The Irish Times, April 28th.
While being refused help is extremely difficult, the pain is further exacerbated when I feel I am disregarded by those, such as health and disability “professionals” who have a degree of appreciation and insight into the barriers that I, and others like me, face on a daily basis. It is so much easier to cope with ignorance than wilful dismissal and disregard.
The way that the original settlement was arrived at under duress was unfair. The focus on fixing us up with artificial limbs was, at best, misguided. The subsequent failure to protect and provide for our needs as children was awesomely neglectful.
But the failure to deliver on promises of open and free access to health services, and to repeat this same offer, 35 years later, with this same flaw of not being on a statutory basis, has been a cruel and unusual form of punishment for me as a thalidomide survivor.
Compounding the negligence and disrespect is the long search for survivors to meet and the struggle to have ordinary, decent lives that are now being overshadowed by the challenge of facing the future.
But our lives are not ordinary and this week the Minister’s offer makes this clear. Or maybe it doesn’t. Maybe we have achieved what has eluded us all our lives. We are ordinary. Our lives are ordinary. The Minister’s refusal to release documents and to engage in meaningful discussion is ordinary.
Ordinary in a long line of incompetence, neglect and disgrace by this State. We are following in a long line of citizens, like those with Hepatitis C, who have been wounded by the negligence of a State whose first response has been to protect itself and not to acknowledge its injured citizens.
The presentation of this latest offer, with its chilly reference to compassion and no admission of liability, with its total lack of awareness of the wrong that was done really does make us ordinary.
So it is time for the Government to do the ordinary decent thing. It is time to acknowledge the wrong that was done and that needs to righted. It is long past time for a fair and a just and a negotiated settlement.
This is all that is required to make our less ordinary lives decent.
Mary Duffy is an artist living in Newcastle, Co Wicklow. Her paintings may be viewed on her website, www.maryduffy.ie/