Roger Loveless: Ethics should apply to living

Whatever the outcome of the debate about pre-implantation genetic diagnosis (PGD) (please see link below), I would hope there's no more talk of the Holocaust or the medical professionals playing gatekeeper (God?), and recognition that we have another way of avoiding unnecessary suffering.

It's up to us, as a civilised nation, that once a child is born, it must be given the opportunity to achieve its potential. We should work to remove the discrimination that still exists towards the disabled and their loved ones.

If there is one thing disability causes, it is the theft of time.

Disabled people lose time on the basics: getting dressed, washing, doing the shopping. Wouldn't you feel frustrated if a toilet stop took 20 minutes and not two?

Would you prefer to be enjoying the outdoors, wandering the shops, doing the job you trained for - or helping your loved one merely to live? You may do it for love, but why are professional caregivers so poorly paid?

I have a publicly funded manual wheelchair, provided after no fewer than five agencies were involved. Value for insurance, about $5000, I'm told. I also bought my own, admittedly second-hand, mobility scooter. Cost $800.

I established a business eight years ago and passed over income protection insurance with a loading of 250 per cent - clear discrimination in my book.

I can no longer mow lawns, dig gardens, swing a hammer effectively, or safely remove heavy dishes from the oven. What tax relief do I get? The princely sum of a little more than $300.

I can walk short distances, but my mobility card is essential. When I shake your hand, the lack of grip isn't because I'm not friendly. The strength isn't there.

Take me seriously when I say I need a handrail to climb a few stairs when invited to make a presentation at conferences. But please remember, I've got over being embarrassed. If you get embarrassed, that's your problem.

On such issues as PGD it's time to enter into a meaningful debate.

Do we accept the advantages, recognising there can be abuses, or deny those most affected a way out?

What we need are clear definitions of what constitutes abuse of these new technologies and a recognition that there is a place for ethics, just as there is in the treatment of the disabled.

* Roger Loveless, who has Beckers Muscular Dystrophy, is a director of Odyssey Energy Ltd in Hamilton.