An “ordinary life”: is that good enough?


by Philip Patston.

A recent episode on NZ’s disability series, “Attitude”, focused on the impact of prematurity on babies and on their lives as they grow up.

As a premature baby myself, what frustrates me about this issue is the lack of the following conversation, which the episode sadly lacked: If society continues to invest millions and billions worldwide into medical research that enables babies to be resucitated after birth at less than two-thirds gestation — to create “miracle babies” — what is its responsibility to invest similarly, if not more greatly, in supporting us and our families to live “miracle lives”?

Currently Ministry of Health disability support policy aims to give us “ordinary” or “good” lives. It fails in most cases and that’s not good enough. Until spending on medical research and ongoing support is equitable enough to create miraculous lives for babies who miraculously survive, I think it is unethical for medical science to continue on its egotistical quest to brag about how early it can intervene in nature’s will.

Check out the poem I wrote — Mindset Number 35 — 20 years ago, about this issue. How much has changed?

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