Access by Various artists

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Access: Social media, disability activism and community inclusion

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  • Russell Brown,

    Thanks Hilary. Just to note, we can always be reached via the Email button under the posts. These come through to me and if necessary I'll discuss them with Hilary and Sacha. (Note that you can't attach files when you contact me this way, so you'll have to make contact and I'll email you back.)

    A good format for us is Microsoft Word – Word docs import easily to our content management system and any linked text you have formatted in them (links are good) will carry over. Note that the wiki-style formatting in Public Address comments does not apply to posts.

    The same does not apply to images in Word docs, so it's better to send them separately and note where they should go. (I can save images out of Word docs and put them back in the web version, but it's an extra step.)

    Resist the urge to format your document in too fancy a way – that can mean I have to wrestle with them to make them presentable online. If you have a block of quoted text, just mark it as such – perhaps with (begin quote) at the beginning and then (end quote) – so I know how to to format it when I'm editing it.

    I'm also happy to do a little work to polish up submitted copy, but if you're not confident about your style or spelling, it's a good idea to get someone else to have a look at it before sending it in.

    I like the fact that we have posts about policy issues and posts about personal experience here, and we try and strike a balance. Both are equally important.

    Auckland • Since Nov 2006 • 22754 posts Report Reply

  • Kumara Republic,

    If there's only one thing I find more irritating than serial victim blamers who think shock treatment and hard knocks can fix anything, it's serial Pollyanna types who think smiles and positivity porn fix anything. Before she died of brittle bone disease, Stella Young perfectly deconstructed that 'inspiration porn' nonsense.

    All the same, the equivalent of a wheelchair ramp for 'invisible' conditions like ASD aren't immediately obvious. From my experiences, I've concluded an apprenticeship-style training scheme (think DevAcademy or Specialisterne) would be the closest match, but it's up against the prevailing survivorship-biased NAIRU orthodoxy.

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

  • Naturesong, in reply to Russell Brown,

    Just a quick note for those who may not be aware …

    You don’t need to fork out money to Microsoft in order to create your word documents.
    There are several open source and cloud word processing applications that work with *.doc and *.docx formats and are free (as in free beer).

    The most widely used (and most accessable) two would be Open Office (https://www.openoffice.org/) and Google Docs (https://www.google.com/docs/about/)

    Auckland • Since Jan 2014 • 3 posts Report Reply

  • asnz,

    Thank you Hilary. :-) Yes, we are also "using the power of social media to fight back against this isolation" and Facebook is still the chosen main platform for autistics+allies using their initiative to do so.

    Aspergers Syndrome NZ is at https://www.facebook.com/groups/ASNZGROUP/ and welcomes folk both on the spectrum and related to them by way of care and special interest. From there one can progressively move out to 180 autistic-led groups covering a variety of support, information, discussion, and specialised matters, both local and global in nature.

    As just one example, I have very much appreciated the tens of thousands who have taken time to share so much in the journey of my wider family's and my own need for information, and I consequently make quite an effort to hand what I learn on and encourage still more to chip in.

    Autism pretty much still remains a 'greenfields' topic - wide open to development through Facebook and the spread of information from all other sources. I only hope Facebook can continue to develop to accommodate a greater variety of needs well into the future.

    Upper Hutt, New Zealand • Since Jul 2011 • 8 posts Report Reply

  • Hilary Stace,

    For anyone who is interested and can be bothered, there is a short opportunity before 5 November for feedback to the government's Disability Action Plan 2014-18. This follows another short consultation in September. I would have preferred a longer time frame which would have allowed the request and information to circulate out to the sector and let people think about the issues. I missed the first one altogether, and have only just heard about this second one (on a Facebook page).

    ACC is also asking for public feedback - two days left - in an exercise called Shape your ACC .

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    For anyone who is interested and can be bothered,

    You know Hilary, I downloaded that puppy the other day. Peter and I read through it.

    Nearly flicked it up here(somewhere)...and decided...what's the point?

    For a bloody start...the Plan is "2014-2018"....they will have the next one in the pipeline already.

    Secondly....judging by the submissions made for the first draft....the thing's a bit of a dead, stinking dog.

    Any changes will be minor tweaks endeavoring to make their wrong Plan work.

    AND...no damn mention of the Failed Funded Family Care scheme or the PHDAct(2)....despite a section of the Plan waffling on about 'rights' and the UN Convention.

    Your post talks about feeling isolated.

    Despite having a partner with a significant physical disability, having been involved with the care of children with disabilities...I read these documents and almost never feel like they have any relevance to our situation.

    Peter feels the same. He's done the working with a disability thing, living 'independently' thing, doing 'the ordinary life' stuff. Not only does he get little credit for this....but he is actively penalised for having achieved these things.

    His supports needs are assessed depending on his 'resources'....like me, and the fact he owns a home, and had savings....

    You talk about people finding out what they are "entitled" to....this might work in the compulsory education system...but when it comes to accessing health and disability supports through the Public Health system....there are NO entitlements.

    Ignore my grumpy rant....great post anyway.

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

  • Craig Young,

    This is why I love the DPA page on Facebook. It's full of anger, debate, networking and radical ruminations. Someone urgently needs to reform the disability section of the Human Rights Act 1993 and close all of these ridiculous discriminatory loopholes.

    Wellington • Since Nov 2006 • 566 posts Report Reply

  • Hilary Stace, in reply to Rosemary McDonald,

    I am reclaiming the word 'entitlement/s'. MSD, MOH and the Min of Ed will say there aren't any and people have to meet eligibility requirements within a ring-fenced budget (although they won't admit that second part). But they should be Entitlements.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Craig Young,

    This is why I love the DPA page on Facebook. It’s full of anger, debate, networking and radical ruminations

    Hah! I got thrown off. Too angry. Too radical. Too Human Rights obsessed. Too open about some of the less glamorous aspects of disability. Too keen to hold certain people to account for their compromised positions. Too demanding that ALL the disability stories get told....not just the happy clappy 'inspiration porn' stuff.

    Towards the end of my involvement on that page there was a conversation....if you could call it that... about parents opting to have their significantly disabled daughters sterilised. The issue was not black and white, and there were opposing points of veiw, and there were disabled women who were tentatively supporting these parents...having lived the reality themselves. Their voices were shot down. I tried to present the argument that 'blanket policy' won't work in the incredibly diverse disability arena...but no, those who thought that in some circumstances these procedures could be beneficial were, well, nazis. Alert Godwin here!

    I received PMs from a couple of complete strangers, aghast at the sheer aggressiveness of two of the predominant commenters. They were ganging up on anyone presenting an alternate view.

    I only signed up on FB to find out how the government managed to pass the PHDAct(2)....despite dozens of high profile disability/carer advocacy groups out there who should have been supporting the case from day one.

    My mission was successful.

    Removing myself from facebook was the best thing I ever did.

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

  • Rosemary McDonald, in reply to Hilary Stace,

    I am reclaiming the word ‘entitlement/s’.

    Onya, Hilary!

    How can we help?

    Set fire to ourselves on the steps of the Beehive perhaps....start our own 'Disability Spring'?

    I am so far gone down the road to complete and utter cynicism...

    What is needed is non government funded disability advocacy...the steel toe cap booted variety...not the wishy washy 'we're better off sitting at the table' rubbish we have now.

    Imagine....those for whom disability has real impact on their daily lives...and my guestimate, based on the MOH data would be in the region of 30,000 people....

    http://www.health.govt.nz/system/files/documents/publications/demographic-information-on-clients-using-ministry-dss-september13-apr15-v2.pdf

    if each of these people subscribed, at a cost of $10 each, to such a group....that's $300,000. That is someone full time in Wellington getting up the noses of the MPs, sitting in on any Select Committee making damn sure that our voices are heard. Lobbying. Lobbying.

    Then another couple of full timers building and maintaining a website that gives a real pan disability voice. Organising regional meetings....ensuring that the word gets to ALL....not just the 'insiders'.

    Claim back independent advocacy.

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

  • Sacha, in reply to Hilary Stace,

    a ring-fenced budget

    "cost-effective" is another ghastly phrase MoH love using

    Ak • Since May 2008 • 19686 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    I worked for many years trying to set up such a thing. Got resisted and diverted, naturally. There are real structural disadvantages that make disabled people and families very hard to coordinate and represent.

    Ak • Since May 2008 • 19686 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    And such a thing is needed now, more than ever.

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

  • Russell Brown, in reply to asnz,

    Aspergers Syndrome NZ is at https://www.facebook.com/groups/ASNZGROUP/ and welcomes folk both on the spectrum and related to them by way of care and special interest. From there one can progressively move out to 180 autistic-led groups covering a variety of support, information, discussion, and specialised matters, both local and global in nature.

    I’m a member of that group and the more parent-oriented Autism in New Zealand group, which sees a steady stream of autism parents turning up to report the same shit with schools etc that we had to deal with 15 years ago. It feels good to be able to offer moral support and advice there. The occasional bit of woo pops up, but not too much.

    Auckland • Since Nov 2006 • 22754 posts Report Reply

  • Russell Brown, in reply to Sacha,

    I worked for many years trying to set up such a thing. Got resisted and diverted, naturally. There are real structural disadvantages that make disabled people and families very hard to coordinate and represent.

    We've got a guest post about the problems with planned power cuts coming. The people most affected don't get consulted.

    Auckland • Since Nov 2006 • 22754 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    Ak • Since May 2008 • 19686 posts Report Reply

  • Rosemary McDonald, in reply to Russell Brown,

    We’ve got a guest post about the problems with planned power cuts coming. The people most affected don’t get consulted.

    That will be something to look forward to. Even when they do 'consult'...its largely pantomime.

    Is no-one else totally pissed off that "the same shit with schools etc that we had to deal with 15 years ago"..is still happening?

    Russell...this Access site....worth it's weight.

    When I win Lotto...you're on my 'recipients of my beneficence' list.

    In the meantime...ta.

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

  • Hilary Stace, in reply to Rosemary McDonald,

    Education exclusion stuff still happening. That is why there are so many submissions to the current select committee inquiry that Kirsty Johnston has written about in one of the articles in the post. It has become an opportunity to express numerous and various frustrations about the system.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    Kirsty Johnston has written about

    One awesome journalist/reporter/writer.

    Consistently produces sound, solid, quotable work.

    (P and I still feeling a tad guilty we didn't do a piece with her about spousal caring. We didn't want to do the video thing....and we have media trust issues. Not that we didn't trust Kirsty.)

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

  • Sacha,

    Autistic friend, oxytocin?

    Ak • Since May 2008 • 19686 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

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

  • Rosemary McDonald, in reply to Sacha,

    oxytocin

    powerful stuff, oxytocin.

    again, is this unnecessary medical intervention?

    A thread, methinks.

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

  • Sacha, in reply to Rosemary McDonald,

    and the only media release I've seen so far is from well-resourced service provider, IHC.

    Ak • Since May 2008 • 19686 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    unnecessary

    that probably depends on what it enables.

    Ak • Since May 2008 • 19686 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    To inject a touch of humour into a very serious issue....

    Peter had not quite finished growing when he broke his neck, Within a couple of years he had reached his full height of around 6'4"...and weighed about 75kg. (A No. 8 he was, in his walking days) His Mum, obviously so over trying to wrestle this largish lad with very long and unruly legs (lots and lots of involuntary spasm) had a brilliant idea.

    Drop him on the railway crossing closest to the hospital, have an ambulance at the ready, and let the train do the necessary. Problem solved. Peter reckons it wouldn't have bothered him at all. Forty years down the track we use those spasmy legs to pressure relieve and for balance during transfers. I was quite horrified at the thought of 'amputation for convenience', but he still wouldn't have a problem with it.

    I guess its the same for many interventions...like various forms of tube feeding. For some its a vital necessity, others have formed an advocacy group to help wean children off them. Urinary catheterisation and colostomies....very strong and opposing feelings within affected communities.

    I guess it comes down to what improves the quality of life of the individual.

    What enables.

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

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