Posts by Hilary Stace
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This is about consent and the ethical, philosophical and legal area between what decisions parents/guardians can make and what children and disabled people can consent for themselves. Peter is an adult with a voice so doesn't apply.
We actually have no legal age when children generally, not just disabled children, can consent about interventions for themselves. We work on 16 but that is just convention. Many ethicists say that with care you can get informed consent from even young children.
The CRPD was battled out by many people from many countries over many years, precisely to state and protect the rights of those disabled people who don't have a voice. It is no more extreme than the 1948 UN Declaration of Human Rights is extreme.
I agree that the ODT does some good disability reporting and there are many people in Dunedin with informed opinions including at the Bioethics Centre at the University there.
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From the ODT article
Some of the general principles are indisputably important (‘’equality’’, ‘’respect for inherent dignity’’, ‘’respect for difference’’ and ‘’non-discrimination’’) but some would be impossible to apply to Charley purely because of her circumstances.
I disagree. Because of the level of her impairment all the Articles of the UNCRPD are particularly important, including the right to bodily integrity.
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The blink technology currently available is more sophisticated than this. The young man I know (who is available for conference presentations by the way) is an active Tweeter, Facebooker and makes and posts Youtube videos.
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Here is a very long and distressing article from the NY Times about a current court case. Distressing because of the premise that a severely disabled man is incapable of independent thought and sexual relationship. Also mentions Facilitated Communication. I have read lots of FC'd books and blogs by autistic people, or people who started with FC and now use computers, and I have seen Annie McDonald - who is mentioned in the article - give a conference presentation, and it is obvious that they are very much in charge. Not surprising that one of the first things often revealed by non-verbal disabled people is abuse as disability abuse is so common. I just wish the man in this case was allowed access to blink technology to allow his voice to be heard.
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Hopefully those Kiwiblog commentators don't read this about a US man killing a disabled child via his feeding tube. And if the child had not been disabled, would the sentence have been harsher? Very likely.
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Last year a large glass memorial to the disabled victims of the silent holocaust was unveiled on the site of the killings in Berlin. A report in the Atlantic gives a name to that child and his parents..
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What saddens me about this story is that it highlights our general fear of disability (to do with our own mortality) and our (social and political) dislike of children. So any calls for independent advocacy for a disabled child are bound to be shouted down. It is much easier to see disabled children as inconvenient burdens for individual families, than for society as a whole to really address rights, provide appropriate supports and to include and promote the participation of all people.
The medical model of disability as an individual problem plus neoliberal economics triumphs over the social model, shared resources and responsibility, and inclusion.
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I don't like to criticise the choices of parents who currently have the day to day care of their disabled children with high and complex needs. But non-therapeutic interventions without consent are an extremely ethically fraught area. We have a nasty and dark history of eugenics, so need to be very careful and aware of the values, attitudes and implications of such actions, and be honest about whose benefit they are for.
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Access: Social media, disability…, in reply to Rosemary McDonald,
Education exclusion stuff still happening. That is why there are so many submissions to the current select committee inquiry that Kirsty Johnston has written about in one of the articles in the post. It has become an opportunity to express numerous and various frustrations about the system.
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Access: Social media, disability…, in reply to Rosemary McDonald,
I am reclaiming the word 'entitlement/s'. MSD, MOH and the Min of Ed will say there aren't any and people have to meet eligibility requirements within a ring-fenced budget (although they won't admit that second part). But they should be Entitlements.