Letter_to_the_Judge

In June 1973, the Association for Justice for Irish Thalidomide Children corresponded with the Department of Health. Stating that “through inadequate warnings to doctors, chemists and parents and the carelessness of some of the government parties, the drug containing Thalidomide continued to be available, sold, and administered to parents long after the 1961 world warning ” This was a disaster fathered by a lackadaisical drug regulatory system . I was one of those babies affected. I am now in the third and final stage of my life, and suffering increasing pain and disability. I have grown up and lived a life where freedom and privacy has been an unknown concept. From a very young age, I felt like a guinea pig in a science lab. I was subjected to a large number of medical examinations. Doctors exhibited me, for medical students to learn. I have endured ill-founded attempts to have my arms and legs interfered with or operated on. I had many invasive and unnecessary tests performed on me with great pain and discomfort. This done to make “me look as normal as possible”. Many of these trials were of an experimental nature and mostly unsuccessful. Moreover, there were countless plaster casts made and trials with prosthesis, splints and braces fitted. No one listened when I tried to say that I preferred to use my own limbs. My mother although she understood, felt powerless to disagree with the so call professionals. All this was happening to me at a time of childhood and adolescence. Childhood and Adolescence is a time for living, playing rounder’s and hopscotch, laughing, dating boy’s, trying out new fashion, learning and loving. Instead I was a little girl and a young woman with no arms, no legs looking on. The persons involved with this drug “took my life and maimed my body” no one has apologised to me for what was done and those involved have exonerated themselves by claiming that they compensated me quite adequately. Over the years, I have had to tolerate the medical and health care professionals, callously and routinely ignore my dignity and intelligence. Even today, by virtue of this, many normal functions such as childbirth, relationships and authority have had a very traumatic effect on me. I have an attitude of fear and dread towards, physicians and hospitals Even now in 2009, when I present myself, to doctors and hospitals all too often, the medical profession find themselves total perplexed by my joints and other body parts and treatment can be quite often delayed or misdiagnosis. On two occasions, I was left in extreme pain as a result as misdiagnosis. The National Rehabilitation Hospital would call to admit me un-necessarily, far too numerously; this meant separation from my family, friends and significant problems with school attendance arose. For some thalidomider’s this resulted in inadequate education. Further education was a questionable issue. Consequently, so was the choice of a career, which could only be established on what you could physically adapt too, in my case not a whole lot. Accelerated deterioration in my abilities has lead to early retirement. Therefore, my lost salary has left me with no accumulation of credits for a pension. So that I would not wake up in the morning starting my day with negative thoughts, I tried to work hard to achieve and ignore the limits of my disability, only to find I had a short time (10 – 12 years) to enjoy them and I succeeded. Now, I need assistance for almost every aspect of my daily life. 12 years ago, I could dress, use the toilet, have a bath, cook for myself, and get in and out of my car and drive. I can no longer do any of these things because of accelerated deterioration in my body from over using muscle and bone in ways they were never meant to be used. The special solutions, which are required in order help me regain some of the independence I once had, needed substantial monitory resources that are difficult and sometimes impossible to get approval for because they are not pre-budgeted for or in the remit of the H.S.E or other government agencies. Sometime I would receive equipment easily but mostly, I fought and fought hard, but no matter what the outcome, I always had to wait for many months to get whatever it was I needed. I cannot walk, I have no ability to get about without a wheelchair, yet, I have to wait months to get a new one and some time up two 6 weeks to have one repaired. I can tell you during this time I would become so depressed. Now I am terrified if a screw is lost on my chair because I know what lies ahead. For adaptations on a large scale such as car, bathroom, house controls, which would give a dramatic change to the independence and quality of both my life and other thalidomider’s, and allow me to have some possibility of leading “a normal life”. The costs have been prohibitive. Some thalidomider’s have literally spent their “life savings” in order to maintain some level of independence. I myself am traveling to the north of Ireland after Christmas to spend roughflly €2,500 to buy because the system in place to provide me with this equipement is total in adquite for all disabled persons let alone my unique needs. Borrowing money through normal channels e.g. banks can be impossible for those of us on benefits. Other problems include the declaration of the word “Thalidomide”, on life, health and car insurance forms etc., this has lead to excessive loadings and sometimes it has not been possible at all, as each of our disabilities, are unique. It can and has been, be argued, that I am no different from any other disabled persons. The reality is, this was a tragedy not of my making, or of nature. It is a man made tragedy. One, in which I have been forced to endure. Now at 47 years old I have never seen fair or morally descent justice for the horrendous injuries and crime made against me. What is morally wrong, should not to be legally permissible' They, did the crime, I am doing the time. It is hard to believe that, more than 30 years on, we have to fight again to win justice for those of us who are totally innocent victims. Not a single government in any of the countries has recognised that with power they inherit responsibility. The Irish government promised my parents to provide anything that would necessitate my handicap in order to allow me to lead as normal a life as possible. However, the government eluded to explain that I would spend the rest of my life fighting alongside other unfortunate disabled persons for a budget to get only one third of what I need and what my parents were lead to believe they were promised for me. As movement becomes restricted, the cost of mobility mounts. I am so hurt, bewildered and tired, of hearing the words of you have been well looked after. I am afraid of what my future holds in store for me, my husband and my children because my disability is so badly cared for. I would like to spend the last years of my life not having to worry where my next chair is coming from, who is going to repair it, and when. Who is going to open my hall door, window, pull back the curtains, and much more, when my husband is not at home. These things are not pipe dreams they can happen. Lord Ashley was Labour MP for Stoke-on-Trent south from 1966 to 1992 “Justice is not time limited. It is an absolute. When a grievous wrong is done, those who have suffered need respect and help throughout their lives, not just while the rest of us can be bothered to pay attention. Yet most forget too easily, and so one wrong is followed by another”. Referring to thalidomide UK victims And a recent editorial of the London Financial Times spoke of the wider debt the modern world owes to the Survivors of Thalidomide who continue to shoulder the burden while the world benefits from the effects of their struggle:- • The strengthening in drug systems, • More systematic testing, • Tougher rules on the advertising of medicines I would like refer to the settlements that were made in other countries. • In the UK and in the Commonwealth countries the settlement was £50,000 per child and, in addition, the parents of each child received a sum of £5,000. Plus a trust was there to help with other things • In the US, the settlements have been for sums of £100,000 and more. • In Canada the figure has been £100,000 in respect of each victim • In Sweden and Denmark, the settlements have varied between £35,000 and £50,000 with a built-in inflation clause. Plus a society that helps with other things • In Japan, the settlements have ranged between £47,000 and £57,000 depending on the degree of severity of the damage caused to the children by the drug. • In Australia, the average settlement has been for £51,000 with an additional £5,000 for parents. • In Ireland, the settlements were between £7,000 and maxim settlement of £20,000. I know all of this might be a little long winded but I hope I have provided you with a slight window into a little of a part of my life. when you have read this you will understand why I feel justice was not done.