Access by Various artists

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Access: Social media, disability activism and community inclusion

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  • Rosemary McDonald, in reply to Hilary Stace,

    blink technology

    A young man of our family's acquaintance, with CP (non verbal) used such a method.
    He could blink, and cast his eyes up to the left. He could consciously move one arm... slightly. Sometimes we would spell words, he had a picture board, or we would do this 'twenty questions' thing, with him making 'yes' or 'no' responses.
    Not very high tech....but very, very effective method of communication. The kid had an eidetic memory, and a very wry sense of humour. He loved to set us a 'problem'...for want of another word....and watch us all wrack our brains over the next few days trying to figure out what he was on about. One time, he even 'got' his mum (who had done the groundwork for his language acquisition) and a week after he had returned home she had to phone us up to ask "why is my son the father of a chicken?".

    He did well at school, left home to live 'independently' in another town, and sadly passed away not long afterwards.

    Waikato, or on the road • Since Apr 2014 • 1344 posts Report Reply

  • Hilary Stace,

    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.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald,

    Now here's a curly one....

    http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11538130

    The young man has Asperger's...is it appropriate for him to be held responsible for his on line porn peddling?

    Waikato, or on the road • Since Apr 2014 • 1344 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    Yes.

    Ak • Since May 2008 • 19688 posts Report Reply

  • tussock,

    Yeh, the compulsive collecting and sharing isn't linked to the predatory or harmful actions that the laws there are designed to limit, but the law is an ass and applies equally to all of us.

    Dude needs a new hobby, anyway, being securely monitored for a year or so might help him find one. Or could do, if prisons where useful places that taught people good habits, instead of shitty places we get our kicks from putting the poor people who got caught.

    Remember kids, it's not sexual harassment if you're the Prime Minister, especially not those kids he was touching.

    Since Nov 2006 • 608 posts Report Reply

  • Angela Hart,

    There's a balanced piece on Charley Hooper in the Otago Daily Times.
    To quote:

    Society is often quick to judge, but not as ready to offer support.

    and

    Any examination of legislation should consider the current financial, physical and psychological support networks in place for people with disabilities and their families - and the resourcing of these.

    http://www.odt.co.nz/opinion/editorial/361302/rights-responsibilities-and-reason

    It should astound people not closely linked to the disability community to know that Charley's family is seen by many of us to be one of the lucky ones, because they have ACC support. The support they have access to is the best New Zealand offers.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Hilary Stace,

    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.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    right to bodily integrity.

    ....and there's another curly one right there.

    Do the stalwarts on DPA NZ facebook still rise up in arms at yet another article in MSM about some kid's family fundraising for an extra cochlear implant?

    We would read those comments and wonder if perhaps Peter should divest himself of the various technologies that enable him to survive....to satisfy the 'disability rights activists' . So he wasn't a traitor to the cause.

    This is a very difficult and finely balanced area. Extreme views from both sides should probably take a breath or two. :-)

    There is a strong disability(esp. ACC) and carer community in Dunedin. ODT have always done a sterling job of getting their issues out there.

    Waikato, or on the road • Since Apr 2014 • 1344 posts Report Reply

  • Hilary Stace,

    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.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Angela Hart,

    The government has announced that it will drop the 2018 disability survey.
    http://www.scoop.co.nz/stories/PO1511/S00017/government-plan-on-data-could-make-disabled-people-invisible.htm
    Make the problems invisible and they'll go away?

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Hilary Stace,

    There is also a new review of the 1989 Education Act but they only want suggestions that don't cost money and preferably punish the poorer and less well resourced schools and reward the wealthy ones. Inclusion is on a long list of things that boards 'might' consider.
    http://www.education.govt.nz/assets/Documents/Ministry/consultations/Updating-the-Education-Act-1989-A-public-discussion-document.pdf

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Sacha, in reply to Angela Hart,

    and again, why is it left to a large service provider to complain about this?

    I have only just downloaded the initial documents from the govt disability data working group, which turns out to be stacked with departmental reps and only one each for all DPOs and all Providers.

    Frankly no time to review it right now, let alone respond. But then, others are supposedly being paid to do that.

    Ak • Since May 2008 • 19688 posts Report Reply

  • Hilary Stace, in reply to Sacha,

    This was only confirmed at the end of last week. I have been asking ODI and others for awhile and they weren't allowed to say anything. Sam from CCS is the provider rep on the new group so had recently found out the details but had to wait till Friday when ODI put info about the group on their website to go public (I am assuming). Initially it seemed that the new group was going to be funded by cutting the disability survey - so much for a wonderful new initiative! - but it seems that the decision was quietly made in 2012 and wasn't mentioned even during the big consultation on the whole census earlier this year. So we get a new group with only 3 sector reps and numerous departmental people which will do what exactly? and still lose the only real instrument for collecting disability data we had.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    Peter is an adult with a voice so doesn’t apply.

    We were talking about this as we drove up to Auckland today so himself could have yet another invasive procedure to ensure his non functioning bladder drains.

    We were talking specifically about babies with spina bifida. First surgery will be to install a shunt to drain excess cerebrospinal fluid from their brain, and maybe close the meningocele. Then, there will be splints, surgery, botox jabs to try and keep paralysed feet from contracting. Then there will be all manner of invasive stuff done to never-having-functioned bladders (more complicated than for an older person becoming paralysed). Some of these procedures work....some don't and have to be tweaked and changed. (We were speaking with an older woman with sb the other day...we came to the conclusion that the urologists had been experimenting on her. Really radical surgeries that were supposed to fix all...and she's worse off. )

    Much of this stuff is done before the child is able to consent. Much of this stuff is quite radical and more often than not irreversible. All of the consenting parents have to be guided by the medicos...Without quite extreme intervention, the child could very possibly die. Big call. I don't think that as much research goes into improving outcomes for kids with sb in this department (especially for the girls)...and with the overwhelming % of parents opting to terminate when the baby has sb....

    P.S. When Peter had his accident he was twenty. Old enough to consent to very invasive and irreversible procedures....but in traction and in a coma. So, his parents must have consented. He presumes. He has no resentment...he would have died had they not allowed the surgery to go ahead. Having said that...in 1970, the concept of "informed consent" was in its infancy.

    Waikato, or on the road • Since Apr 2014 • 1344 posts Report Reply

  • Sacha, in reply to Hilary Stace,

    I'm quite open to putting proper disability questions into other more regular surveys like GSS and HLFS, but I have little confidence in the nous of those making the decisions on our behalf. Again.

    Ak • Since May 2008 • 19688 posts Report Reply

  • Sacha, in reply to Hilary Stace,

    it seems that the decision was quietly made in 2012 and wasn't mentioned even during the big consultation on the whole census earlier this year.

    Yes. How brave of them. From p5 of their October meeting notes:

    The decision to run one post-censual survey after each census and for Te Kupenga (Māori social survey) to be the post-censual survey in 2018, was made well before the decision to set up the DDEWG.

    Ak • Since May 2008 • 19688 posts Report Reply

  • Hilary Stace, in reply to Rosemary McDonald,

    There are also the distinction between therapeutic and non-therapeutic interventions. It is often obvious which it is and the ones you mention are in the therapeutic category and even for people in comas there are ethical procedures (now although they weren't so common before the Cartwright Inquiry).

    It is non therapeutic interventions which I have an ethical issue with. When there is no obvious benefit to the individual yet there is the risk that comes with operations and interventions. The benefit is for the convenience of a third party. That is when lack of consent and voice becomes a real problem.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Sacha, in reply to Hilary Stace,

    The benefit is for the convenience of a third party.

    Though that third party is likely to be an integral part of that person's life support arrangements. I'd really rather have a court or ethics committee untangle all that. Fundamentally, much stronger support for all disabled people and families is needed.

    Ak • Since May 2008 • 19688 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    It is non therapeutic interventions which I have an ethical issue with

    I'm really struggling with the whole stunting of the growth thing. I can speak with some authority on this particular issue. I agree...it can be difficult or even impossible to go some places, do some activities...and heaven knows the 'system' ain't going to make it any easier. But I am not comfortable with engineering the child rather than the environment.

    Waikato, or on the road • Since Apr 2014 • 1344 posts Report Reply

  • linger,

    Somewhat apropos is last week’s* episode of Robert Newman’s Entirely Accurate Encyclopaedia of Evolution, which contrasts and compares such historical opinions as:

    We stopped natural selection as soon as we started being able to rear 90-95% of babies that are born.

    Bill Hamilton:

    By our acceptance of the Mephistophelian gifts of modern medicine, we are visiting on our descendants a disaster equivalent to an asteroid impact. A century and half ago, sickly infants died, but now almost any breathing human matter can be perfused and kept alive.

    Charles Darwin:

    Those communities which included the greatest number of the most sympathetic members would flourish best and produce the most offspring.

    Peter Kropotkin:

    When humanity makes progress, it is nearly always because of nervous wrecks, invalids, the chronically ill and infirm and so-called inferior people.

    Disturbingly, the Hamilton quote is the most recent of these (from 1985).

    * broadcast 29/10/2015; available through BBC Radio iPlayer until 28/11/2015.

    Tokyo • Since Apr 2007 • 1889 posts Report Reply

  • Hilary Stace, in reply to linger,

    Bill Hamilton was my mother's first cousin. I only met him once and didn't realise his significance, although I visited and corresponded with his mother Bettina who was a New Zealand-trained doctor. I recently read his biography Nature's Oracle which covers the development of ideas around evolution during his academic years (c 1960s- 2000). His contribution was about altruism in nature. Fascinating.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Angela Hart, in reply to Sacha,

    I have little confidence in the nous of those making the decisions on our behalf. Again.

    We must be a fearsomely scary lot since this decision making group has been so heavily weighted to counter-balance our 3? representative voices. Sam of CCS is good value, I don't know the others. I don't know whether it's more frustrating being one of the peasants or being in such a group but not heard.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Hilary Stace, in reply to Angela Hart,

    The way this group was promoted was that it would be full of disability sector representatives and people with lived experience of disability issues. In the end it was only a provider rep, a university rep and a DPO rep (and as usual no remuneration was offered with these roles) along with numerous public servants. I've no complaint about public servants personally but these days they are not allowed to criticise or even critique any Government policies. I applied for the university place, as did several others I know, but am happy they chose Brigit Mirfin-Veitch from the Donald Beasley Institute as she has done lots of great research with people with intellectual disability and is the research advisor for People First. But with so much invested in this group, now we no longer have our usual Disability Survey, and with the huge gaps in disability data generally, it should expect a great deal of scrutiny about its work.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Angela Hart, in reply to Hilary Stace,

    Has a reason been given for scrapping the Disability Survey and extending the data collection interval to ten years? It's difficult to see any justification for this unless a better, much better system is rapidly put in place to make up for the loss. Does the new group have the resources to do that?

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Angela Hart,

    Has a reason been given for scrapping the Disability Survey and extending the data collection interval to ten years?

    Obfuscation. Cloud with issue with insufficient and arbitrary data and They can make all manner of wild and inaccurate claims and costings and declare...

    "Eek! Shriek! Funding these supports will bankrupt the nation! We must rush to pass legislation to place responsibility on family to provide support! Freeing up limited funding for those with no 'natural' supports!"

    Waikato, or on the road • Since Apr 2014 • 1344 posts Report Reply

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