Access: Your Relationship With Disability
62 Responses
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Russell Brown, in reply to
Hi Lesley. Great to see you here.
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(A) I have scoliosis, and osteoarthritis in my jaw, which recently has caused chronic pain, and inability to eat foods such as an apple. But I've never really identified as having a disability. Almost certainly ADHD, but that's another story.
(C) When I was younger, my mum was very close friends with Eve Rimmer. She taught me a lot about the world in general, and living with disability in particular.
(D) Yes.
(G) I certainly feel there is always more to learn, and this blog has already been effective in increasing my awareness.Great work one and all.
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B-F Yes, but always learning.
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Rosemary McDonald, in reply to
my mum was very close friends with Eve Rimmer. She taught me a lot about the world in general, and living with disability in particular.
Peter and I opened and closed our submission on the Family Carers Consultation with quotes from Eve's book...."No Grass between my toes."
“(Mum) took the view that things wouldn’t happen if she waited for the committee’s approval. ...She acted. In her view - and I agree - committees are often the burial ground of the best of intentions.”
“But I came to the horrifying discovery quite early in the struggle that the more independent you are, the more independent you might have to be because if you ever get to the stage where you need aid nobody will believe it. “ 1978.
One wise woman.
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Erin,
(A) I have Cerebral Palsy
(B) My mum has Multiple Sclerosis.
(C) I have many disabled friends
(D) I have a workmate who is (also) a disabled person.
(E) My work isn't exclusively related to disability but some of it is.
(F) I am doing my law honours dissertation on the Convention on the Rights of People with Disabilities. -
Sacha, in reply to
dissertation on the Convention on the Rights of People with Disabilities
Sounds interesting. Want to tell us more, some time?
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I'm the partner of a wonderful woman with Spina Bifida. Before meeting her I had almost no exposure to those who live with disabilities, but with good humour, compassion, and a healthy dose of bloody-mindedness we've built a good life together.
We've overcome obstacles together and pushed out the boundries of what each of us thought possible for ourselves. I've been coming here to read others stories as they often have parallels with our lives together, and often show perspectives neither of us had seen.
Thank you to all who contribute, what you write is appreciated and enlightening. -
Sacha, in reply to
thank you, Justin.
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Hilary Stace, in reply to
I would like to hear more about your dissertation too, Erin, having just this evening been trying to understand the complexities of the latest reporting round and the DPO submissions. Did you hear the Government has just committed to starting the process of signing the optional protocol? About time.
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I have Spina Bifida - my partner has posted his story here. 4 years ago we moved into our own place. Always thought it would be an inevitability that I'd be living with the help of a caregiver once my parents passed on. Since meeting him i've shared so many wonderful experiences and done things with my life I would never have imagined possible. Everything is possible with determination and support. I have been told that my confidence has grown and I have become stronger for living my own independent life - and I have my partner to thank for this.
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Sacha, in reply to
I love a happy story. Thank you for posting.
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Sacha, in reply to
Everything is possible with determination and support
So true.
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Angela Hart, in reply to
Everything is possible with determination and support
So true.
I wish. But yes, lots is possible.
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Cynicism is understandable for many of us but does not undermine the hopes of others.
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JacksonP, in reply to
I must drop in here more often. Although this place has a habit of making me tear up a little. Thanks for sharing your stories everyone.
One wise woman.
So true. I remember the book coming out, but I was a bit young to appreciate it all back then. Will have to borrow it from mum.
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C) I have a few friends with bipolar disorder, and hearing and sight impairments of varying degrees.
G) Like lesley mclean says, there's always more to learn.
H) Other - I work in the healthcare industry, though I'm not involved in patient care or policy making, so I have very little influence. -
I have bipolar disorder: it slammed like a meteor into my life, so that there is really only Before, and then the years reeling from the impact, and Now.
Mostly, now, you would never guess. Sometimes, it disables me.
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Sacha, in reply to
reeling from the impact
it shakes worlds, yes
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Sacha, in reply to
Mostly, now, you would never guess
And that is part of this too - you never forget, even though others may not notice anymore.
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Erin, in reply to
Hi Hilary and Sacha. My dissertation is essentially going to be focused around the challenges of implementing CRPD, using post-earthquake Christchurch as a case study. Treaties are easy to ratify but implementation is another matter especially when the government is trying to balance cost with other obligations. I don't expect it will be a terribly optimistic paper but I think it will be interesting. If anyone knows of any research or particular policies they think I should highlight, please let me know. I have only just handed in my proposal so I haven't really dived into things yet.
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Sacha, in reply to
Thanks, Erin. Off the top of my head, I'd be interested to hear:
- what the money the government invested in the main DPOs specifically for Chch-centred work has produced.
- how the proposed weakening of national building access standards relates to that and similar work in Chch.
- what efforts Council, CERA and others have made to engage disabled people in planning the rebuild. So they can't dissemble, ask how many actual disabled people they talked with, how many DPOs, how many service providers, how many disability-related agencies - and how much of their budget they invested in engaging that grouping compared with others and with the total stakeholder population. The amount they spent on language translation and interpreting for ethnic stakeholders is always an interesting comparison.
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Sacha, in reply to
and please do remind your readers that the government directed extra investment towards Chch in all disability-related spending areas - so any results do not reflect usual spending or effort either there or across the country in honouring/implementing the UN Convention.
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Angela Hart, in reply to
and the "Enabling good lives" demonstration has been set up for Christchurch, and now the Waikato, but is not (yet) available to the rest of the country.
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Hilary Stace, in reply to
Yes implementation is quite different. The 2008 ASD Guideline with its 300+ recommendations is a great document for its time, but implementation has been very limited due to: lack of agreement on priority, different interpretations of what the recommendations mean, lack of resources, lack of data and information, and numerous other problems.
Actually treaties aren't always easy to ratify either. The US still hasn't ratified CRPD despite Obama's strong support. They haven't even ratified the Convention on the Rights of Children!
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Russell Brown, in reply to
If anyone knows of any research or particular policies they think I should highlight, please let me know.
One thing that might be relevant this year is that AUT is finally focusing on disability as part of its role of conducting and analysing the World Internet Project surveys for New Zealand. The WIP has come up with some interesting demographic insights on Maori and Pasifika users and I expect the same will apply with disability.
I think Sacha is also talking to Philippa Smith abut this.
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