Access by Various artists

Read Post

Access: Social media, disability activism and community inclusion

169 Responses

First ←Older Page 1 2 3 4 5 7 Newer→ Last

  • Sacha, in reply to Rosemary McDonald,

    You are comparing the decisions of disabled people with those of family on their behalf. I'd tread carefully. Or roll carefully.

    Ak • Since May 2008 • 19686 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    after being (rudely) prompted, RNZ has finally posted the Paul Gibson clip I heard at 5.30pm.

    Ak • Since May 2008 • 19686 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    I’d tread carefully. Or roll carefully.

    We always do.:-)

    While I was mulling over this issue, back then, being torn between a 'rights' based approach and my natural tendency towards practicality and pragmatism...this popped up...http://attitudelive.com/blog/amy-hogan/amy-hogan-why-i-believe-some-parents-should-have-right-sterilise-their-disabled-child

    Amy Hogan writes with refreshing independence and genuine insight.

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

  • Hilary Stace,

    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.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Joe Wylie, in reply to Hilary Stace,

    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.

    My heart goes out to this family. I can only assume that they've exhausted all alternatives before settling for what appears to be such a drastic solution.

    flat earth • Since Jan 2007 • 4591 posts Report Reply

  • Rosemary McDonald,

    Phillip Patson blogs about the tension between principles and reality....

    http://philippatston.com/blog/child-s-medical-treatment-highlights-tension-between-principles-and-reality/

    and from the link that Joe put up...

    "“There are well developed ways to manage severely disabled people in New Zealand and to assist family members,” the panel wrote. “ To consider alternatives raises the concern that these are less than ideal .”

    The last sentence definitely fits into the "no shit, Sherlock." department.

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

  • Hilary Stace,

    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.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    I'd like to see independent advocacy for ALL children and vulnerable people.

    I'd also like to have firmly enshrined rights, and those entitlements Hilary, before these conversations get serious. Chuck in there talk about doctor assisted suicide.

    Decisions of this nature cannot be influenced by fear of further reduction in access to vital supports.

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

  • Martin,

    I’ve read so much advocacy for Charley's parents that I’m beginning to wonder if there was every any advocacy for Charley at all? I cast my mind back to the Silent Holocaust and recall it was one parent’s request to Hitler that their severely disabled child be euthanized that started it all…

    Palmerston North • Since Mar 2015 • 25 posts Report Reply

  • Martin,

    PS Sorry, forgot to mention, great original blog Hilary

    Palmerston North • Since Mar 2015 • 25 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

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

  • Mark Hadfield, in reply to Martin,

    Martin, if the Silent Holocaust reference was intended as an over-the-top parody of the slippery slope argument, then it's a very good one. If it was intended as a serious contribution to the discussion, then perhaps you could explain how it relates to the topic.

    Wellington • Since Jun 2015 • 7 posts Report Reply

  • Rosemary McDonald,

    Reading the article by Donna Chisholm, linked to above, I was grieved to read that the Hoopers were motivated to stunt their daughter's growth because it is much easier to navigate this world as a helpless dependent child, than as a physically impaired adult.

    I guess that's a big fail on 'community inclusion' for those with significant impairment.

    One could quite rightly make the argument that perhaps the Hoopers should get out more and see that people with disabilities are participating in lots of activities in the community....but the truth of the matter is that it requires a shit ton of effort to enable this. And Charley is covered by ACC, who are infinitely more inclined to fund equipment for mobility in the community.

    How many decades have disability activists tried to get local and central government to truly embrace the Standard?

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

  • Martin, in reply to Mark Hadfield,

    We forget our history to our peril, Mark. Under certain regimes it has been more convenient for parents to kill their inconvenient children; today we must guard against it becoming acceptable to surgically mutilate disabled children for parents' convenience.

    Palmerston North • Since Mar 2015 • 25 posts Report Reply

  • Sacha, in reply to Mark Hadfield,

    Ak • Since May 2008 • 19686 posts Report Reply

  • Rosemary McDonald,

    "At last we consented to the doctors giving her a shot of morphine, ..."

    From one of the stories from ....http://aim.org.nz/aspirations/

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

  • Hilary Stace,

    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..

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald,

    I don't know why I do it, but over on the right....http://www.kiwiblog.co.nz/2015/10/a_difficult_decision_for_parents.html

    Farrar fans are in full flight. The "discussion" rapidly degrades from

    There cannot be the slightest shadow of doubt that the parents have the best interests of their daughter at heart and that they love her dearly.

    It’s outrageous for the HRC or a social workers to argue that a judge could possibly know better than the parents.

    to ....

    Didnt I hear this morning that some fucking idiot has applied for the “right” of this baby in a body to be “allowed” to grow to adulthood? Someone tell me I am wrong…

    to....

    The child does have a very limited quality of life. Growing into puberty and beyond is really quite meaningless to someone who is a vegetable.

    and...

    The options are if the parents dont want to spend the next fifty years caring for a human vegetable mandk?
    Starve it to death.
    Stick it in an institution for the rest of its short life .
    Neither are any better and in many ways are worse than euthanasia.
    It can not consent mandk because it is incapable of thought it only has basic reactions to physical stimuli.

    and to top it off...a 'logical progression' argument for euthanasia of disabled people...

    The child can not respond to its name and has no ability to connect the name to itself or recognize others .

    What do you suggest should happen mandk if the parents should decline to care for it or due to a change in circumstance can no longer do so?
    Chuck it into a hospital ward to be left to rot for as long as it lives ?There is not that much love or attention to go around in such places as well as a high probability that abuse of some sort will happen .The child will need constant care that it is incapable of responding to in any way.
    I say that the choice of euthanasia should be available to the parents and medical community if they believe it is the best option
    That doesn’t mean I think we should kill it.

    If this is the commentary from the Ruling Right, methinks the slope is slippery already.

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

  • Mark Hadfield, in reply to Martin,

    Because sterilising someone is the same as, you know, killing them.

    It was an over-the-top parody of the slippery slope argument.

    Wellington • Since Jun 2015 • 7 posts Report Reply

  • Rosemary McDonald,

    I am actually feeling quite ill after reading through that lot, and god forgive me, counting the up/down votes. The horrible smell could be the old dog at my feet farting....

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

  • Hilary Stace,

    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.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Kumara Republic, in reply to Rosemary McDonald,

    If this is the commentary from the Ruling Right, methinks the slope is slippery already.

    I hate to invoke Godwin, but nothing else can sum it up more effectively.

    60000 Reichsmarks: this is what this person suffering from hereditary defects costs the Community of Germans during his lifetime. Fellow Citizen, that is your money, too.

    The southernmost capital … • Since Nov 2006 • 5419 posts Report Reply

  • Rosemary McDonald, in reply to Kumara Republic,

    I hate to invoke Godwin, but nothing else can sum it up more effectively.

    Yep. Having spent the past eight years or so tracking the disability $$$ and reading the narrative that accompanies each new happy clappy 'don't we just love the disabled' document I've noticed a creep of the use of the word "sustainability". Even the Spinal Cord Impairment Strategy, which dealt largely with ACC clients (who are the 'worthy' disabled with legislated entitlements), used the expression "long term liability".

    This really, really concerns me.

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

  • Hilary Stace,

    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.

    http://mobile.nytimes.com/2015/10/25/magazine/the-strange-case-of-anna-stubblefield.html?referer=http%3A%2F%2Fwww.pinterest.com&_r=4

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Martin, in reply to Mark Hadfield,

    No, it was not an over the top parody of the slippery slope thesis. We are well and truly on the slippery slope already. One only has to follow the links Hilary & Rosemary provide.

    The point is terrible things are still been done to disabled people and, by and large, they are sanctioned by the mainstream.

    Palmerston North • Since Mar 2015 • 25 posts Report Reply

First ←Older Page 1 2 3 4 5 7 Newer→ Last

Post your response…

Please sign in using your Public Address credentials…

Login

You may also create an account or retrieve your password.