Posts by Hilary Stace
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It is great that David has been an advocate and friend to Paul for so many years. And on one level this is a lovely enlightening story.
However, there is something about this post that has been worrying me and I think it comes down to that ethical test about treating others as you would like to be treated. So would you (David or readers here) be happy to be 'Paul' as portrayed here? To have someone publish quite personal and sensitive stuff about your life without obtaining appropriate consent from you beforehand?To assume that you are unable or unwilling to tell your own story? David claims it is his own story, but with my academic hat it could also be considered that Paul is a participant in David's writing/research on intellectual disability and friendship. As someone who has an interest in research with so called 'vulnerable' participants there are some extra ethical considerations to address when doing such research such as issues around power and status, careful management of relationships and checking for evidence of shared understanding about those relationships, and ongoing negotiation of consent (or at least assent) about revealing any details about participants.
This might sound hypocritical from someone who has written frequently on PA and elsewhere about parenting my son. I can make the same argument as David, that those are my stories about parenting, and not really about my son. But I realised during an event a few weeks ago that I knew very little about my son's thoughts and feelings and that he was quite able to express these himself given time and the right environment. I now realise I need to be more careful and more respectful of him as an autonomous adult human.
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I'm just working on a funding application for research on and with people with intellectual impairment.This discussion has highlighted a lot of the issues I am grappling with, so thanks.
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The DomPost apparently thinks it is OK to feature disability hate speech on its letters page today. The writer not only denigrates a named person, but is using that same argument against disabled people that is often used by racists - that one about Maori (in this case disabled people) wanting to be equal but apparently demanding 'special' treatment. Able-ism like racism (and sexism and homophobia), is often just below the surface and doesn't need much encouragement to flourish.
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OnPoint: What Andrew Geddis Said, But…, in reply to nzlemming,
In defence of disability NGOs, many have been forming themselves into 'peak bodies' in the last few years in an effort to make themselves collectively more effective. Several disabled people's organisations make up the Convention Coalition which has government funding to undertake research to monitor the UN Convention. A large nuber of health and disability organisations make up Carers NZ which has managed to get a Carer's Strategy out of government, and has a variety of ways of communication with its large constituency including a radio programme and free glossy magazine full of interesting caring stuff. Providers have joined up to form the NZ Disability Support Network which provides conferences and seminars. The Ministry of Health also has an MoH-NGO relationship which has free seminar every so often. However, the last one recently was more of a PR exercise for the Ministry than an open dialogue and groups appeared wary of criticising because of the delicate power relationship at the moment.
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OnPoint: What Andrew Geddis Said, But…, in reply to Angus Robertson,
I wasn't aware of the issue of paying family carers in the time of the Labour government. What I was aware of was:
-the development of the 2001 NZ Disability Strategy by disabled people, and the establishment of an Office for Disability Issues to monitor it
- disability made a priority area for research
-the development and beginnings of implementation of the NZ ASD Guideline
-the development of the Ordinary Life report (about citizenship of adults with intellectual impairment) which was published by the National Health Committee then headed by Kevin Hague, and the beginning of a programme to address the major issues identified including
-The closure of the last institution, Kimberley, in cooperation with families, and
- the closure of sheltered workshops (which was a long hard battle).
- A disability information advisory service to People First, the self-advocates own DPO
- NZ Sign Language becoming an official language
- Significant input into the drafting of the UN Convention on the Rights of Persons with Disabilities including from many disabled people and organisations
-and the ratification by NZ and the passing of the Disabilities Act
-The winning by NZ of the rarely awarded international Roosevelt award for disability (and when the Gov Gen and two reps of DPOs went to collect it from the United Nations the only reporting of the achievement was the DomPost which called it a 'junket')
-a 2 year select committee inquiry and subsequent report (just before the 2008 election) on how to improve the quality and care of disability service provision, including a paradigm shifting Local Area Coordination system to replace the gate keeping NASCs
- a 5 year Carers' StrategyOK there was a lot not done or achieved but that is a list of some of the sector achievements led by the first Minister for Disability Issues, Ruth Dyson. As minister she regularly attended the AGMs of every disability organisation that asked her, and was always accessible. She must have also had considerable influence around the cabinet table as all these policies had considerable cost. I also heard that Helen Clark often asked Ministers to seek disability representation to those boards and agencies that had government appointees, such as the National Ethics Advisory Committee.
Before judging her, I would like to hear what Ruth has to say about the family carer issue from her time as minister.
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OnPoint: What Andrew Geddis Said, But…, in reply to 81stcolumn,
Another little nasty in all of this is the cumbersome NASC assessment process which operates undervery limited and out of date criteria: only intellectual, physical or vision/hearing impairment is considered for support. And only those already assessed as having high needs are covered with this new policy.
I have a recent example of a NASC quibbling over IQ points (70 v 71) to deny support to an autistic adult. So much for for the social model of disability as articulated in the NZ Disability Strategy and the UN Convention whereby disability is seen to be a result of exclusionary barriers and it is up to all of us to remove those barriers.
So what is not covered in this new legislation are the impairments named in the last decade or so, for example, autism ADHD or fetal alcohol syndrome without ID, the increasing numbers of people affected by diabetes or long term effects of being a very prem baby.
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The question about political action is interesting. I know a couple of people who are considering standing on party lists in 2014. But it is really difficult as most disabled people have extra support needs (such as NZSL interpreters) that make that process very hard and expensive (and poverty is a real issue for disabled people). And many people, as Alison mentions above, are so busy and exhausted from daily survival, that there is no energy for wider work.
A group of DPOs has formed the Convention Coalition and have funding to monitor the UN Convention - so that is one positive recent advance.
There are also groups like IHC Advocacy and People First who use their resources to educate. People First (an organisation of adults with learning disability) runs seminars to educate their members about the UN Convention (also employment rights etc), and IHC ran a seminar last year called Making Rights Real focusing on the three articles of legal rights, educational rights and participating in the community. IHC is also taking the educational exclusion case to the Human Rights Commission but which is currently stalled. These things (like the carers' case) can take years.
If there was a select committee for the carers' legislation, many groups would have made submissions, as they did for the select committee on the quality and care of service provision which ran from about 2006-8 (and which was supposed to stop any further abuse).
In this particular situation I think the government has been poorly advised and had no idea that this would backfire on them. There is an entrenched view on the right that caring is family work, mainly for mothers and not worthy of payment - it's called 'natural', ie unpaid in policy terms. The charity model will deal with any unfortunates who don't have 'natural' supports. John Key struggles to articulate this in today's DomPost - I bet he never thought he would be required to comment on an issue so far from his own radar.
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OnPoint: What Andrew Geddis Said, But…, in reply to George Darroch,
Hard to say. I mentioned somewhere that the rough estimate of self-identified disability in NZ is 20% of the population and that Carers NZ suggests that everyone will be at some point in their adult life either cared for or a carer. However, the activism is more diffuse. There are several Facegroup groups I follow, such as DPA NZ, Aspergers Syndrome NZ, We Care NZ (Carers NZ) and the current one shaming people who park in disabled car parks, and several with international membership such as the excellent Black Triangle Campaign for Disability Rights (UK) which Deep Red mentioned, and the Autistic Self Advocacy Network based in the US. There is a lot of sharing of relevant blogs. There are also DPOs for disabled people only (which I do not belong too as I am not).
They are all political to a degree, some subject specific (eg Carers NZ is very active around carer type issues as you would imagine rather than disability rights per se, while others often reference the UNCRPWD). They are very good at sharing information, locally and internationally, and I guess good at keeping people connected when it is very easy to feel isolated.
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OnPoint: What Andrew Geddis Said, But…, in reply to Matthew Poole,
Congratulations Matthew. How lovely.
I sympathise with your fury. I experienced that on Thursday afternoon. Cheering that at last the family caring issue had been addressed (which was one of the main things I was looking for in the Budget, being a disability policy enthusiast) but shortly after that realising it was actually a two finger reaction to the decade-long court case. Then anger at the passing of the whole thing on Friday under urgency, just like the National Standards legislation had been in 2008. And then the despair that no one outside the Facebook disability groups would notice or care.
But they have. So there is hope. -
OnPoint: What Andrew Geddis Said, But…, in reply to Graeme Edgeler,
NZ had particularly strong input into drafting the UN Convention on the Rights of Persons with Disabilities and possibly the last act of the Labour government was passing the Disabilities Act which ensured all our law was compliant and the Convention ratified. Since then it has become obvious that there are still many breaches and the calls for ratifying the optional protocol have increased. By the way there is widespread familiarity with the UNCRPWD in the disability sector, particularly within disabled people's organisations, and the various articles - which might surprise the government.
I fear that the Maori Party voted for this for political expediency. I was very disappointed that Tariana, Minister for Disability Issues, did.
Sir Bruce Slane having a good go at this issue on the RNZ Panel as I write citing Andrew Geddis and this blog here too.