Access by Various artists

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Access: Respect, please

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  • Angela Hart, in reply to Christine Peet,

    Christine, you wouldn't be the person you are if you were walking, I know many people who would not change their lot, except perhaps in relatively minor ways, but who deserve more respect than they get.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Moz, in reply to Angela Hart,

    I was taught sayings like "Do as you would be done by" , "Don't judge a man until you've walked a mile in his shoes" , "If you can't say something positive, don't say anything" and "You reap what you sow"

    Most of those only work at a meta level, though, and many people completely miss the point even while literally obeying them. That's where you get the "wear earmufffs/use a wheelchair" version of "walk a mile", for example. And "do as you would be done by" is a classic trap for the egocentric and socially unaware. They end up giving a soccer ball to a blind person because "soccer is great fun".

    They work fine as a thinking exercise, "how do I think this person would feel" and "what would it be like if" can be very useful. But even more useful IME is to directly state the primary lesson from all of those: ask people about their desires and only do things you have consent for.

    Sydney, West Island • Since Nov 2006 • 1193 posts Report Reply

  • Rosemary McDonald, in reply to Brendon Murray,

    the problem is what you experienced on you day in the chair was the solution to the disability not the disability itself if you have tetraplegia or muscular/skeletal impairment the pain the lack of respect people speaking above you, the hours of preparation getting ready to get to the chair before you can start your day it forgets the frustration of day in day out being a prisoner to the environment to the fact that no matter how independent you are you still need support to sometimes even do pass your bodily functions, the chair is just a an appliance that aids your mobility.

    And somewhere in there Brendon is the discussion that got me thrown off the DPA NZ facebook page.

    I had the audacity to say what Cheryl Marie Wade said in her brilliant piece in Ragged Edge, "It Ain't Exactly Sexy", featured here http://regator.com/p/245866886/bowel_bonanza_a_week_long_exploration_of_bowels/

    It appeard that some in the DPA NZ community were very uncomfortable with the "yucky" aspects of managing a high spinal cord injury. Strange indeed since the discussion was centrered around an Attitude programme about an ACC funded tetraplegic and how inspirationally wonderful her life was becomming as she adjusted to life in a wheelchair.

    I was trying to bring to the fore the significant disparity in supports between ACC and MOH for those with spinal cord impairments.

    ACC acknowledges that managing bowel and bladder dysfunction requires time and expertise, and also acknowledges that mishandling of bowel and bladder issues can lead to serious medical problems....even death.

    Not to mention completely shitting up your day.

    The MOH does not.

    I have tried, and given up, trying to get our two NZ on Air funded disability programmes (Attitude and One In Five) to do a comparison and/or a "walk a mile in my shoes" programme on tetraplegia under ACC compared with tetraplegia under MOH.

    Forget it.

    Why?

    Seems that ACC funded tetraplegics would not be willing to front up and declare what exactly they were getting in the way of supports.

    SO....if we cannot acheive any sort of fellow feeling, " do as you would be done by"/ "sauce for the goose, sauce for the gander" narrative within the disabled community...how the hell can we expect the non disabled community to ever hope to get a true picture of our lives?

    And by " our" I mean disabled people AND the families who share their everyday lives.

    Waikato, or on the road • Since Apr 2014 • 1343 posts Report Reply

  • Angela Hart, in reply to Rosemary McDonald,

    I have tried, and given up, trying to get our two NZ on Air funded disability programmes (Attitude and One In Five) to do a comparison and/or a "walk a mile in my shoes" programme on tetraplegia under ACC compared with tetraplegia under MOH.

    Forget it.

    Why?

    Attitude avoids politics and controversy. It didn't used to but ....

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Angela Hart,

    Attitude avoids politics and controversy. It didn’t used to but ….

    Thou shall not bite the hand that feeds you?

    Waikato, or on the road • Since Apr 2014 • 1343 posts Report Reply

  • Sacha, in reply to Angela Hart,

    It didn’t used to

    Really? I’ve never seen them cover it.

    Ak • Since May 2008 • 19680 posts Report Reply

  • Angela Hart, in reply to Sacha,

    Nothing hugely controversial but I do recall an effort on improving disability parking provision, that's what I was thinking of. I'm in two minds about Attitude, on the one hand it does get some stories told and shows aspects of life with a disability that Joe public doesn't usually notice, but on the other there are so many opportunities it chooses not to take. Such a shame, but it's most probably a survival issue.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald,

    I suspect their brief is to present disability in a good light….positive and happy clappy inspirational (although there’s nothing wrong with inspirational…

    http://attitudelive.com/blog/red-nicholson/opinion-be-or-not-be-inspiring

    stuff to show that all is well in the disability sector. That just by being positive, and putting in the effort, good will rain down upon us.

    I kind of get that with Attitude…they present as slick and sophisticated visually…with wheelchair using presenters sitting on couches in the studio and all that…and I suppose it would be incongruous if they then did a hard hitting piece about shit care from contracted providers…you know, fifteen year olds being left to drown in the bath, etc.

    I am really disappointed with One In Five.

    Natrad did some really good work on the family carers case and tied that nicely with the reports of hideous torture and abuse at Parklands and Te Roopu Taurima. They did some very in depth work on the terrible case from Nelson….

    http://www.hdc.org.nz/decisions–case-notes/commissioner%27s-decisions/2013/11hdc00877

    highlighting the shocking dodgeing by the DHB…that compounded the horror of the abuse that the young man was subjected to.

    Then they air One in Five….week after week of what is becoming quite tedious pap.

    And yet Peter and I still listen to it, ( ardent Natrad listeners we are when on the road) forever hopeful that one day…..

    Waikato, or on the road • Since Apr 2014 • 1343 posts Report Reply

  • Christine Peet, in reply to Angela Hart,

    I was just telling my partner what you said and he agreed. He also said that if there was a magic cure and I could walk tomorrow, he reckons I would take it... the idea frightens me, but who knows.

    New Zealand • Since May 2014 • 28 posts Report Reply

  • Kumara Republic,

    Has Hollywood ever made a movie where an ableist jerk is left crippled in an accident, and is utterly ill-equipped to deal with the world he dumped upon? If not, it'd be the perfect Sundance/Cannes pitch.

    The southernmost capital … • Since Nov 2006 • 5415 posts Report Reply

  • Rosemary McDonald, in reply to Kumara Republic,

    Has Hollywood ever made a movie where an ableist jerk is left crippled in an accident, and is utterly ill-equipped to deal with the world he dumped upon? If not, it’d be the perfect Sundance/Cannes pitch.

    One movie comes to mind.

    http://en.wikipedia.org/wiki/The_Doctor_%281991_film%29

    Not disability per se, but puts the shoe on the other foot with reasonable success.

    Waikato, or on the road • Since Apr 2014 • 1343 posts Report Reply

  • Glen Koorey,

    I teach transportation practitioners about design of street environments for walking, and that includes discussion about consideration of universal access/mobility issues (e.g. kerb ramps, tactile pavement markings). While I can present the theory about how to provide for this, I don't think they fully get it until we have a session where they spend about 90 minutes exploring the street environment using wheelchairs, blind-vision goggles, etc (see http://www.comsdev.canterbury.ac.nz/rss/news/?feed=news&articleId=551 for more info). I know from my own experience that my perspective on how "good" a street is was changed after I undertook this training - I now see the various little obstacles that the average able-bodied person just blithely negotiates without thought. So there are circumstances where such "mile in my shoes" training can be of great benefit.

    Christchurch • Since Apr 2013 • 19 posts Report Reply

  • Hilary Stace, in reply to Glen Koorey,

    I hope they use those manual wheelchairs with the horrible little front wheels that get caught in every crack in the pavement and threaten to tip the occupant out.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Sacha,

    bonus points for crossing a railway

    Ak • Since May 2008 • 19680 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    Having a bit of a chuckle at this Hilary.

    Peter has those small caster wheels on the front of his manual chair, and oh, how they will find any and all irregularities in the pavement surface.

    Peter had two accidental tip outs....here at home, simply rolling over a slight crack in the concrete. Gets a bit ugly. We have broken those casters hitting supposedly flush manhole covers in town. And don't get Peter started on pavement camber. He has declared Kaitaia main street as the most wheelchair friendly...dead level, but a bummer in the rain unfortunately!

    @ Glen Koorey...Hilary makes a very good point about the type of wheel chair. Power chairs and mobility scooters are very popular and can increase independance....but there are a number of die hards who prefer a manual chair...and designers might need to be aware that they are a completely different beast. And while we understand how useful to the vision impaired those raised yellow bumpy pimply areas at pedestrian crossings are...they can be diabolical on those little wheels.
    But...I usually have to push Peter across crossings as the kerbs are too steep for him to manage, and he simply can't push fast enough.

    All in all, while it is appreciated that designers make the effort to 'walk a mile', nothing can really take the place of lived experience....and there are plenty of folk with a multitude of disabilities who are perfectly capable of sitting down with designers and engineers and making their needs known.

    Waikato, or on the road • Since Apr 2014 • 1343 posts Report Reply

  • Angela Hart, in reply to Rosemary McDonald,

    If only the designers and engineers were able to recognise what they don't know and ask for input- from a diverse range of likely users, not a narrow group. I'm getting really worried about the advisory groups and policy makers because they probably think they've taken appropriate steps (language!) by consulting with a narrow group, often of very able disabled. Complex and high needs people are routinely overlooked and it is the group most desperately in need of appropriate access and resources.
    Those tactile strips for the blind are a pain in the backside for manual wheelchair users, as are the lovely up and down slopes for every driveway on residential streets, you'd think we could come up with better systems for everyone. Problem is the problem is not recognised.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Angela Hart,

    they probably think they’ve taken appropriate steps (language!) by consulting with a narrow group, often of very able disabled.

    Oh, yes.

    In our 'before Bus' days, when journeys far from home necessitated staying in motels and the like, we would scour the accommodation guides for the 'wheely symbol', denoting the fact that the particular establishment had met the access standard set by the "XYZ Trust".

    We rapidly learned that the 'wheely symbol' means little, and that by 'wheelchair access' they mean that Whoesit Dosit from the XYZ trust found it acceptable.

    Then you learn that Whoesit Dosit can actually stand, and transfer themselves onto the toilet or into the shower...and had not taken into consideration the needs of those disabled who were less able.

    Off course, travelling in the Bus has its own challenges and although we are self contained with regards to ablutions, and we more often than not freedom camp, designated camping grounds can leave much to be desired.

    And the number of Department of Conservation camps that claim wheechair access when only token efforts have been made....and when we work out our own solutions to access issues some petty little official strides up and say's "oh no!!! you can't do that!".

    We have a long way to go.

    Waikato, or on the road • Since Apr 2014 • 1343 posts Report Reply

  • Angela Hart,

    yup, we stayed in a Tauranga motel this year, checked it was accessible prior, ( as you really have to do), found it wasn't really. Very steep short portable ramp put in place for the occasion but only workable with an able bodied pusher and difficult even then. Bathroom was fine, and that's what the motelier was thinking about, not whether you could actually get in and out of the room unaided. Polite but clear feedback provided but what's the betting if we actually returned, that nothing has changed?

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Christine Peet,

    I live in a street literally two corners from a little shopping centre, and the irony is that it's quicker and safer for me to take the time to put my wheelchair on my hoist and drive there than to push my chair. I have to cross the road sooner or later to get there, and while my driveway is manageable to move onto the road other driveways/curbs aren't. The city centre is a lot better than it used to be, and yes I find the bumps at pedestrian crossings annoying, but also realise that in order to be inclusive things like this need to be done. My biggest gripe is the council are so nice in putting mobility parks everywhere, but they're more often than not the same width as a regular car park. Someone's not following the regulations. The council was very obliging though, when my dad approached them to put in an extra curb outside the parking building I have to park in to get to work, and smooth out one on the opposite side of the road. They also fixed the rampway at the parking building to make it more wheelchair friendly. It'll never be perfect for everyone, but unless it's pointed out to people it's not going to change.

    New Zealand • Since May 2014 • 28 posts Report Reply

  • Christine Peet, in reply to Angela Hart,

    I got given a book some years ago by a friend written by Alexia Pickering with her assessment of "accessible" accommodation. While very out of date, and an updated edition never published (to my knowledge) We use it time and time again, and have found it very accurate and useful. Again 'Accessible accommodation' is in the eye of the beholder, but unless feedback is given they don't know what they should change.

    New Zealand • Since May 2014 • 28 posts Report Reply

  • Angela Hart, in reply to Christine Peet,

    We provided clear and polite feedback, both verbally and in writing.
    The bump strips for the blind can often be placed so that it's still possible to push a manual chair without too much difficulty. Too often they are not. Both sets of needs can usually be accommodated if the designers know enough about the needs of the users. The point I'm trying to make is that they don't.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Christine Peet,

    My biggest gripe is the council are so nice in putting mobility parks everywhere, but they’re more often than not the same width as a regular car park.

    Or.....the carpark is wide enough to get into your chair.....but, there is no ramp up to the footpath without having to beetle behind ten parked cars.....dreading reversing lights coming on.

    You know what would be REALLY handy?

    Some local organisation who one could approach with a particular issue, who could liase with the offending council/business. Explain problem, go have a look, agree that it needs fixing....and fix it....now.

    Shouldn't need a committee meeting, shouldn't need the bureaucracy to process it...just get on with it.

    For instance....those yellow pimply 'tactile strips'. Portable concrete grinder, can of yellow paint....done.

    Waikato, or on the road • Since Apr 2014 • 1343 posts Report Reply

  • Christine Peet,

    Or…..the carpark is wide enough to get into your chair…..but, there is no ramp up to the footpath without having to beetle behind ten parked cars…..dreading reversing lights coming on.

    Our supermarket was renovated some time ago, and someone put in concrete ramp where the mobility parks are. It got taken away when the renovations were done so I emailed the store owner saying it was a brilliant addition and much safer than wheeling behind cars where you're possibly not seen. His reply? Not going to put it back 'lots of people have to walk behind cars'. Supermarket now under new management and the ramp is back. Great for trolleys, even better for a wheelchair :)

    New Zealand • Since May 2014 • 28 posts Report Reply

  • Christine Peet,

    It is gobsmacking that people using wheelchairs are routinely asked about their sex lives

    I have recently changed agency and went through their service plan questionnaire with one of their staff members. One question related to sexuality and sexual needs. I asked if we really needed to go there and he said he ‘had to ask the question’. It is totally irrelevant to my service plan and what my support worker has to do for me every morning. My service plan has come back with that section answered in this way “manages sexuality and sexual needs independently” I was stunned and have asked a coordinator to explain why this needs to be there, and also to remove it. Both requests have been ignored. Even if I was to get a response I didn’t totally agree with, it would be something.

    New Zealand • Since May 2014 • 28 posts Report Reply

  • Rosemary McDonald, in reply to Christine Peet,

    asked a coordinator to explain why this needs to be there, and also to remove it. Both requests have been ignored.

    NO No NO!

    Totally unacceptable, and breaches your rights under the Code.http://www.hdc.org.nz/the-act--code/the-code-of-rights/the-code-(full)

    1) Every consumer has the right to be treated with respect.

    2) Every consumer has the right to have his or her privacy respected.

    Plus sheer human decency and it's none of his damned business.

    The only times Peter has encountered this question is quite legitimately as part of the three yearly WOF check from the Outreach Team at the Auckland Spinal Unit.

    This is largely a medical review, and such a line of questioning is quite appropriate. HOWEVER...on the form, when it is printed up and sent out to all and sundry...that question is discretely "discussed in private with Dr So and So". End of story, as it should be.

    Christine...this is wrong. I know complaining is the last thing we want to do...but you may want to consider contacting your local advocate...http://advocacy.hdc.org.nz/find-an-advocate.aspx Keep trying...the advocates are very busy....

    Good luck.

    This is just SO wrong.

    Waikato, or on the road • Since Apr 2014 • 1343 posts Report Reply

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