Access: It’s just a bout of Chronic Sorrow
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Thank you for writing this, Hilary. It's good to acknowledge the sorrow. Kia kaha.
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Thanks from me too: a difficult subject but one that needs to be written about and acknowledged.
The rights-based approach you outline has much potential, but seems so far away as to be almost "unimaginable".
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With much love and solidarity, Hilary. And I continue to rack my brain to find ways forward for our kids - it's such a long road.
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Thank you all. It was hard to write and hard to admit to such feelings. But today the sun is shining and we are feeling resilient.
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Joe Wylie, in reply to
It was hard to write and hard to admit to such feelings.
One of the finest pieces that's been published here.
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Arohanui, Hilary. I've felt every bit of this. Several times. It's not exactly nice to hear from such an old hand as yourself that I could be feeling it again and again throughout my life. But it is better to be prepared. Thank you for your insights.
But why should such intangibles as love and luck be required to raise disabled children, and for them to grow up and to grow old with dignity in 21st century New Zealand?
Yes! Love may be hard to produce institutionally, and getting enough may always be somewhat down to luck. But a lot of the luck you're talking about is just a matter of enough financial and institutional support. This is well within our power as a nation to provide. And luck in love is much easier to find when you're not using all your luck up struggling with basic care.
But even with quite of a lot of the straightforward luck (and I'd say we've had that) it's still only ever fighting a massive rearguard action against the tremendous bad luck of being disabled in the first place. I have grieved many times about the child who isn't. I don't want to dwell on it, and suppressed it hard when action was more important than my feelings (in the first year there was far, far too much to do), but it had to come in the end. Ironically, it's usually been the periods of greatest luck that I've felt it reasonably safe to confront the feelings. With a bit of breathing space, some time to sit back and watch how the endless preparations and efforts are paying off, the sober reflection of how different he will always be to his peers, and how we could be caring for him forever can float into my mind.
I think your general approach of positivity is very practical, most of the time. But I don't think there's shame or even harm in acknowledging sometimes that you did have some very bad luck. Then we can take stock of all the important progress too, and the positive feelings return. The child that is is much more important than the child that isn't.
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Thank you Hilary for posting what a lot of us think and also go through, Sorry you are having to go through this.
Those out there touting - put the person with the disability out in the Community - is all well and good if they can cope and the community accept them, I spent the Anzac weekend rescuing some one with ASD who is trying to go through University but is not supported well enough to allow for this to happen. Its just not working from both sides. Government need to review there options. -
Lovely piece that shines Hilary.For some time now I've said that parents of disabled sons and daughters also have a "place in the sun" and valid concerns- not one and the same as the place to stand of disabled people, but one that is valid too. Your words illuminate that place in the sun, and you understand the subtleties of the boundaries. Well done you
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Must be the season for it Hilary.
Every word right on the mark.
I wish I could pick out the lines that best represent my feelings this morning as Peter's e-motion wheels packed a sad and he's now stuck with me pushing him around until I can fix them.
"Arrangements are fragile, Don't hold your breath. Some security would be nice."
Yep.
However...there are moments of real humour....at the expense of the puveyors of the tragic/triumph narrative of disability.
Maybe another time I'll share the conversation that ensued when I attempted to get a little traction from an organisation regarding accessibility. Dear oh dear.
You really have to laugh.
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Thanks for sharing Hilary-you are telling all our stories too.
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Hilary Stace, in reply to
Thanks Joe. That means a lot as we have had some 'robus't online conversations at times.
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Another crisis could be just around the corner. A recent bout of Chronic Sorrow was triggered after an understanding talk with my son’s employer. After 10 years as a loyal employee the job was not working for him or them. And yes I could see that. But what chance another job when even university graduates are unemployed? Meanwhile those Government messages on the importance of work grate sharply. But where are those patient, inclusive, disability friendly employers?
Apologies in advance, but this might get a bit ranty.
I find myself in a similar situation. Having come to grief with every traditional tertiary institute I’ve been to, I seem much more suited to an apprenticeship/on-the-job approach to training. But as I’ve mentioned in another Access thread, apprenticeships are basically a social contract, and need the sort of investment that’s anathema to the feudalism-in-meritocracy-clothes orthodoxy.
The Paula Bennetts of this world are deluded if they think everyone can be forced to graduate from the School of Hard Knocks, just because it worked for them. The sad reality is that the School of Hard Knocks is inherently anti-intellectual and Social Darwinist, and lumps Aspies and other special needs people in with the ‘mental defectives’. Or worse still, lumped in with 'potential spree shooters'.
And if there’s only one thing worse than victim blaming and being told you’re a ‘dumb and useless retard who’s made too many poor choices’, it’s false-hope psycho-babble such as ‘just believe in yourself if you’ve been rejected for 200 jobs’. Pollyanna types saying that sort of thing generally mean well, but it doesn’t sound reassuring to Aspies, it sounds more like an insult to our collective intelligence. 200 job rejections isn’t a sign of perseverance, it’s a sign of societal malaise.
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Oops, one shouldn't type without one's glasses on!
Thank you everyone for your supportive comments. I thought this post might have sounded a bit like the moaning of the privileged. In NZ we have it so good etc. There is always someone less well off.
I know we are lucky. I have a friend with an autistic daughter with high needs for whom everything is a battle all the time. Even getting a night's sleep is a victory.
I think we have to be kinder to ourselves.
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Arohanui to you Hilary, and many thanks for sharing this.
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Hi Hilary,
As a father of three children with Retinitis Pigmentosa, which often leads to total blindness, I hear what you are saying. I have been working for 4 years to build a platform to help businesses connect with job seekers from a Diverse background (although my personal passion is about getting people with disabilities into employment).We are only a few weeks away from launch, and we have been financially supported by MSD, and assisted by Mojo Mathers as well as the Government (so not all cut, cut, cut). There are some very dedicated people working for MSD, which surprised me, as I have never worked with Government Depts before.
My background is recruitment, and I have dedicated myself to help businesses to look outside the square to create a workplace that reflects our society which starts by improved employment prospects from the diversity spectrum. This will be completed by teaching their recruitment teams how to be more inclusive, and creating a pipeline for job seekers to connect with them.
Your post has steeled my resolve to complete this project, as I do have periods of Chronic Resolve over this project, which is my baby. I'll feed some information closer to our launch.
Regards
Adrian -
Thank you Adrian and look forward to hearing more about this project. There are many good people in the public service and good that you have found support.
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While it's years since I first saw Ira Wohl's remarkable Best Boy the moment when his elderly Aunt Pearl talks about how one can't help but have moments of feeling singled out for a kind of divine special punishment has stayed with me. Vulnerable, dignified and utterly humane.
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It hurts me to read this post. It does though seem to prove my position, that we need a totally different society. We need for a start a universal basic income, fore EVERYONE, no matter whether disabled, fully healthy and equipped to work, or not so, for various reasons.
We need not only a “living wage” for those working, we need a UBI of sorts, guaranteed by statute, and by right, for every person at the age of 18 and over. Disability support may be offered on top of that, same as extra accommodation costs, and study costs, training costs, whatever can reasonably expected.
When does Labour and do others in opposition finally get it? I think the Greens more or less have this policy in their basic policy and program.
It is insulting, inhumane and absolutely uneconomical too, to expect parents and carers of disabled, same as disabled and long term sick and injured themselves, to have to fight with endless bureaucracy, with endless limitations and hurdles, to simply get what they need. We get endless forms to fill out, assessments, more assessments, endless reviews, as if some “miracle” may happen, so all get “healed” and can walk on water, so to say, and rid themselves off the “dependence” from state support. Clearly “the state” no longer wants to damned well “care”! Hence outsourcing all over the place!
Through Question Time in Parliament today, Carmel Sepuloni finally got it out of Bill English, Finance Minister, that the government plans to bring in a “voucher system” for disabled. It will involve more outsourcing, more contracting of “service providers”, turning disabled and their supporters or family members into COMMODITIES on “their market”, where you have “choices”, what damned “choices”, I ask?
NO serious expectations or demands are placed onto employers, landlords and agencies, to respect and treat disabled as they deserve to be, it is all about “contract”, business and making a buck out of them, where possible, otherwise they get short shifted to sit on the shelf so to say.
I am damned furious and angry today, at what is going on in New Zealand, also about many in the public, who are now so indifferent, it seems to all be nothing but a battle for “number one” and no other purpose, what has New Zealand become like under this nasty, rotten government, what the hell needs to happen to shake people up, to see that this cannot continue. “Investment approach”, when I hear this, it makes me damned sick.
FFS, some people cannot work and will never work on the “open market”, where is their recognition and place, please?
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Thank you Marc. I am dreading what the Budget will bring after that hint from Bill English. I fear it will be something that privatises social support and absolves the government of responsibility. Something along the lines of the British social development bonds perhaps or the voucher type system the Productivity Commission has just proposed. They assume there are a large number of wonderful services out there that anyone can choose from with a well funded voucher.And that everybody is keen to, in effect, be the employer of any support people. All we need is a bit of competitive tendering and everything will be wonderful.
Mostly, however, there are bits and pieces of services of variable quality, huge barriers in eligibility and cost. For the provider a large amount of time is required in tendering to provide the service, and for the person providing the care or service minimal remuneration and few protections.
Meanwhile there are huge gaps and tons of stress. Trouble is the people devising these amazing new systems have no understanding of what it is like on the front line, to be in constant stress, have no status and little money.
Enabling Good Lives, which is being cited as an example, is a great wrap around service. But so far it has only been used for a very small number of school leavers in Christchurch. It is successful because it is well resourced, very expensive, person intensive and with some very skilled facilitators who relationship build around the young disabled person.
I can guarantee that is not what will be rolled out in the Budget next month.
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Rosemary McDonald, in reply to
Trouble is the people devising these amazing new systems have no understanding of what it is like on the front line, to be in constant stress, have no status and little money.
Absolutely no idea at all....that is why they hire them.
Seriously, a mate with considerable hands on experience with disability was turned down for a job at a NASC as she was considered to be too 'sympathetic'.
Brilliant (and timely) playon Natrad tonight....Sue McCauley's "Rescue Remedy"...
"Young upwardly-mobile lawyer gets the break of his life, or so he thinks, when he is asked to defend the woman who has attempted to assassinate the prime minister (RNZ)"
Held us spellbound while I was trying to fix the damn wheelchair.
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Kumara Republic, in reply to
what the hell needs to happen to shake people up, to see that this cannot continue.
I've said it before, but it's probably going to take some kind of bubble burst - housing in this case - to jolt certain people back to reality. The most obvious fatal weakness of the 'neo-liberal' system Dave Hansford has been posting about.
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Kumara Republic, in reply to
Thank you Marc. I am dreading what the Budget will bring after that hint from Bill English. I fear it will be something that privatises social support and absolves the government of responsibility. Something along the lines of the British social development bonds perhaps or the voucher type system the Productivity Commission has just proposed. They assume there are a large number of wonderful services out there that anyone can choose from with a well funded voucher.And that everybody is keen to, in effect, be the employer of any support people. All we need is a bit of competitive tendering and everything will be wonderful.
What if someone went Adam Lanza after being unable to get the help they need? I suspect all sorts of buck-passing would happen.
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Thanks Hilary. Really hit the spot.
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Sacha, in reply to
Mostly, however, there are bits and pieces of services of variable quality
And no genuine mechanisms to inform purchasers about that. It's a pseudo-market like so many others.
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Sacha, in reply to
Something along the lines of the British social development bonds perhaps or the voucher type system the Productivity Commission has just proposed
They seem to be in the correct phase of the NZ bonds pilot, but I reckon vouchers are more likely. Bonds involve someone who matters taking responsibility. They'd rather palm that off to electorally-irrelevant disabled people and our families to minimise the political risk when something goes wrong.
However the current service system is so broken that vouchers may actually be a disruptive improvement - but only if they're implemented alongside investment in market information and advocacy mechanisms. And whoever sets the value of the vouchers will still have too much control of the results.
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