I move:
That leave be granted to introduce a Bill entitled an Act to enable provision to be made for the prohibition of misleading language occasioned to unborn persons with disabilities by their disabilities, specifically the use of the term "incompatible with life", to enable Ministers of the Government to make provision, consistent with the resources available to them and their obligations in relation to their allocation, for services to meet this need, to provide for the preparation of plans by the appropriate Ministers of the Government in relation to the provision of certain of those, and certain other services, and to promote equality and to provide for related matters.
I am delighted and honoured to introduce the Disability (Amendment) Bill 2014, my Private Members' Bill which seeks to regulate against the continued use of the phrase "incompatible with life". I am also honoured to welcome the parents and family members of Every Life Counts, who are present in the Visitors Gallery and who joined me today for an excellent briefing on the issue. Their testimonies are more powerful than any words I could ever utter in this Chamber or elsewhere. They are courageous and compassionate people who are advocating for an end to the use of the phrase "incompatible with life" to describe severely disabled unborn children.
Like many phrases that may have once been prevalent in our society, such as "illegitimate" or "retard", the phrase "incompatible with life" must be eliminated from our public discourse when describing unborn children with severe life limiting medical conditions or disabilities. My Bill is a humble effort to begin that process. It is a process I hope the Government will support. It is also one which I am confident the medical profession will support in light of its noble calling truthfully and compassionately to diagnose the sick and heal the vulnerable. I and the parents who are present have the highest regard for the medical personnel working in our health care system. As we see from daily news reports, they work under outrageous working conditions, all types of pressure and with a lack of resources. Above all, we wish this process to be a partnership between all concerned parties and to have a conversation about this terminology, especially in view of how the use of the terminology I mentioned earlier has been erased, and to examine this issue sensitively.
We have no interest in criminalising health care professionals. I cannot stress this point sufficiently. We are not seeking to impose penalties or to use coercive means. We are seeking a reasoned and compassionate discussion and the removal of this terminology. We are also seeking the provision of perinatal hospice care, which is badly needed in this country.
No medical professional wishes to misdiagnose or consciously mislead prospective parents about the extent of their unborn child's disability. Despite this good faith, however, the continued use of the phrase "incompatible with life" makes such possibilities increasingly likely. The term is medically meaningless and serves no practical purpose. There is no medical diagnosis for the use of the term. In the words of one of the mothers, Mrs. Tracey Harkin, a spokesperson for Every Life Counts: "This is about ensuring that doctors live up to their professional obligations not to misinform parents, and ensuring that parents and babies get the best medical care possible at a time when they receive news of a diagnosis that can have devastating implications." None of us can know how devastating those implications are until we have listened to what the parents in the Visitors Gallery say, and which they are willing to communicate to the media and everybody else. She continued: "We are calling on all TDs and Senators to support the discontinuation of a label which can lead to lethal discrimination and a lack of best care for devastated families". That is not a big ask.
In the professional discourse of modern medicine, no one would dare suggest that the use of the terms I mentioned earlier could be countenanced. This Bill is simply an effort to include the phrase "incompatible with life" in the misleading terminology that is ill-suited to the practice of evidence-based medicine. I hope the Bill will emerge from the lottery, that the Government will not oppose it and that we can have a reasonable debate in both Houses, so people with far more experience than me in the medical and legal fields can discuss it. Hopefully, we can have this terminology, "incompatible with life", banished from everyday use.
