The cost of noteworthy difference

I do agree with the argument that the government should provide people with disabilities with technological assistance to enhance their autonomy and social inclusion. And I do get your point about Wellington bureaucrats, too...although, there's always the possibility of a Bill of Rights Act court case in the latter context, given that its equality rights section includes disability rights.

I see the point that you're trying to make in Margaret Page's context, although it may not always be the case that technological assistance can ameliorate matters satisfactorily. Although granted too, it should be tried first.

Spot: Look, the survival of the fittest argument works when we live in the jungle. But when we live in a first world society with technology, politics and civilised values, it doesn't cut the mustard. I'm a supporter of voluntary euthanasia, but not until all other options are exhausted. You can't have your cake and eat it too.

Craig: I'm saying that government policy had a factor in Margaret's death, but seems to have been omitted from the public debate. My professional experience is that funding decisions about services and equipment are made with little awareness, logic and creativity. I think it's naive to bring the analysis down to the individual right to life and death. This is about money restricting access to resources - refer my latest post.

I'm not sure what you're trying to say about Margaret's life and death here, Philip. As far as I'm concerned, disability rights and inclusion are a core element of social citizenship. Whether people with intellectual and psychiatric disabilities are less visible, compared to their counterparts who experience physiologically based disability discrimination, is a moot point.

In this context, Margaret seems to have had an excellent quality of life insofar as it was possible under her circumstances, was able to make conscientious, informed and autonomous choices about her right to accept or refuse further health care or nutrition and chose to exercise her legal right not to do so. From what I can see, she made an independent, uncoerced choice.

I tend to be somewhat wary of arguments that depict people with disabilities as 'objects of pity and charity' as Paul Longmore noted in his excellent recent study of US disablity movement history. Mind you, autonomy/community debates are common dichotomies within most social movements.

Once upon a time the sick, the maimed and the deformed were left in the wilderness to die. Life was not a right and should age illness or disability prevent others from surviving then that threat to survival was removed. We are the result of that early form of genetic screening and now we want to turn all that around by forcing the weak and dying to live at significant cost to society. It is sad yes and it seems unjust but even in nature it is this way, the weak die and the strong survive allowing the species to continue. At what cost, the cost of a humane voluntary death as opposed to years of stress, nursing, medication, resources, pain, depression, anger etc etc. It is time to legalise voluntary death for the terminally ill, we are afterall a humane species are we not.

you pay peanuts you get monkeys...its the same with the aged care workers, the pay is disgusting. here in oz to work with people with disabilities you at least have to have cert 111 in disabilities ' and pay starts at $20 p/h
someone i know got paid 12p/h in nz and for the same job got 27ph here.
when someone is getting paid a decent amount , they're not necessarily doing it for the money, but it shows that they are appreciated for the very important job they are doing.

I like to think that one day society will stop looking at disability in terms of expense and resources and instead at what it stands to gain from enabling disabled people to live active and valued lives, regardless of the resources that involves. There are costs involved in disability, but there are social benefits as well.

Thanks for your kind words everyone :-) @Troodles - I agree and my reason for wanting to remunerate people well is not so they'll turn up but because I want them to KEEP turning up. People don't understand how important the relationship is in this role dynamic. I put a lot of energy into building a relationship with my PA's (I prefer that term to 'carer'), because I don't want them to be financially disappointed and leave. I think it's unrealistic and unfair to expect people to be so committed to the job that they deprive themselves - I'm not saying some people aren't, but I'd be foolish to expect it. While we hanker after the charitable ideals of the past, I think it's no longer an economically or socially appropriate model for disability support. The goodwill of others is no longer enough of a currency for disabled people - we need a strong, well-paid workforce to support us to lift our game. So, like any employer, I invest in people to have the return of a loyal, competent team. @Berry: LOL you can trim my toenails anytime!

To my mind Philip, you are one of the most relevant social and political thinkers in Aotearoa NZ at this time! How is trimming your toenails not THE most cunning carrer move?

Awesome blog. They should be turning up to work regardless of the money as you need to WANT to help others, if they are disatisifed they should find another job!! I have a brother with a learning disability, he is now flatting with others with 24 hour care, they have taught him independence and so much more. We value the team as they are part of our family, I would hate for them to be doing it just for the money?