Disability laws: Plea over wording

Mothers of children born with life-limiting conditions want politicians to support the discontinuation of the phrase “incompatible with life” in disability legislation.

Last night in the Dáil Independent TD, Mattie McGrath, introduced a bill to ban the use of the term ‘incompatible with life’ to describe a diagnosed disability.

Mr McGrath said parents who received traumatic news about their unborn child’s disability should not be further upset by a medically meaningless phrase.

However, he stressed that both he and the parents from the support and advocacy group, Every Life Counts, had no interest in criminalising healthcare professionals.

“What we want is a conversation about the wording,” he said.

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Mr McGrath had invited politicians to meet representatives from Every Life Counts before he introduced his private members’ bill. However, no Government member attended.

Every Life Counts spokesperson, Tracy Harkin, said she was told her daughter, Kathleen Rose, who has Trisomy 13, was incompatible with life — she was now eight years old and doing well.

“She has enriched our lives immensely, despite all the challenges,” she said.

She said it was vital that parents who are told their child’s future was bleak received better information and counselling.

“Not only is the term ‘incompatible with life’ extremely hurtful, insensitive and dehumanising, it is preventing best care for babies, both before and after birth,” she said.

The group that wants perinatal hospice care provided for children with life-limiting conditions said Health Minister Leo Varadkar had declined to meet them.

Ms Harkin said that while many parents who had children with a life-limiting condition had had a positive hospital experience, many felt they were very much pushed towards termination.

“It is not the fault of the medical profession who are under-funded and busy. The information is not as up to date as it should be and nobody is really bothered to challenge it,” she said.

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