Up Front by Emma Hart

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Up Front: Another Brick in the Wall

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  • Hilary Stace, in reply to Jodi W,

    Have you been in touch with the Down Syndrome Assn? (Zandra in Palmerston North). They will probably be able to give you the correct information but I suspect that Downs does not require reassessment after the first medical certificate on their files. Don't be so concerned about school at this point. Things are slowly getting better nationwide and there are more and more welcoming schools with inclusive practices. The government's requirements for schools to be able to demonstrate inclusive practices by 2014 has seen many training programmes rolled out around the country by the MoEd. Also, other parents will willingly share information about where to go and where to avoid. The Saving Downs facebook group seems to have a lot of NZ Downs related information too.

    Wgtn • Since Jun 2008 • 3229 posts Report Reply

  • Russell Brown, in reply to Hilary Stace,

    I’m not talking about fathering. I’m just saying that in my experience those disabled children who have an activist ‘mother’ tend to do better throughout life. In reality it is usually the biological mother. But that one person could also be a father, grandparent or some other person who is prepared to fight on the front line for that person’s rights for as long as it takes, which could be a life time.

    What you say about the gendered nature of care in society is manifestly correct, Hilary, but if you’re constructing any positive advocacy role for men as de facto mothering, as you seem to be above, that seems to be drawing a long bow.

    That mother of the two autistic men in Christchurch is a very good illustration of this theory.

    Alison Adams is clearly an extraordinary woman, and according to the Campbell Live report was a sole parent when her sons were diagnosed 50 years ago, which must have been a terrible challenge in itself. But it also seems noteworthy that her second husband, Laurie, has taken on that challenge too. As Gio notes, there's a strong media resonance around mothering roles in this context -- note the way Laurie lurks around the edges in almost every shot of the broadcast report.

    This review of literature on families and disability seems to suggest that the picture is complex and strongly culturally mediated.

    Auckland • Since Nov 2006 • 22850 posts Report Reply

  • giovanni tiso, in reply to Hilary Stace,

    Things are slowly getting better nationwide and there are more and more welcoming schools with inclusive practices.

    Oh, boy...

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Bart Janssen, in reply to BenWilson,

    I don’t actually think that kind of reasoning is “like most kiwis”.

    If you want you can reason it this way. I'm being selfish because I want NZ to have a better economy and social structure - I will benefit from that as much as every one else will benefit. I believe education of our children to as high a standard as possible is the best path to that. It costs me less to educate the children than to pay for security cameras etc etc.

    As for acting against my self interest on the GMO issue - well it's unlikely that The Green policies on GMOs could make research any worse in NZ. They have the power to change their policies based on 20+ years of evidence and I hope they do that but the actual cost to me is low.

    Auckland • Since Nov 2006 • 4461 posts Report Reply

  • giovanni tiso, in reply to Bart Janssen,

    If you want you can reason it this way. I'm being selfish because I want NZ to have a better economy and social structure - I will benefit from that as much as every one else will benefit

    I'm highly sceptical. Even if many people could be persuaded that this is the right way of thinking, it would still amount to a pretty crude economism. These campaigns work - as the one on marriage equality did, as the Basaglia reform in Italy did, as the battles for civil rights did - when they create a moral imperative. It starts with bringing together a few people who care a lot about the issue and you make your case until you've convinced enough people inside and outside of politics proper that there is an injustice that needs to be urgently remedied.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Bart Janssen, in reply to giovanni tiso,

    pretty crude economism

    Yeah it's an ugly way of presenting what is a genuine desire to do "what is right".

    My personal economic benefit is actually NOT the reason I want inclusive quality education, even if I have to pay more for it. But I also recognise that some folks find it difficult to believe I would want to reduce my own wealth for the benefit of someone else without some ulterior selfish motive. Ben's flippant comment is a pretty standard dismissal, as if being a lefty is so wierd that it can and should be ignored. I know he didn't mean it that way but it is the political equivalent of the blonde joke.

    Blame my ugly economic argument on having spent the last 3 months writing grants, where I'm asked to justify doing (pretty damn exciting) science in purely immediate economic gains. It leaves one with a jaded view of those in power.

    You are right though the purely moral argument can sway political opinion, but as you say it needs significant effort by a group of advocates who can shift public opinion.

    Auckland • Since Nov 2006 • 4461 posts Report Reply

  • giovanni tiso, in reply to Bart Janssen,

    Blame my ugly economic argument on having spent the last 3 months writing grants, where I'm asked to justify doing (pretty damn exciting) science in purely immediate economic gains. It leaves one with a jaded view of those in power.

    A friend of mine has made the argument that what Clark and Cullen tried to do through working for families and kiwisaver was to make the middle class buy into the idea of social welfare by making it materially relevant to their situation. If those were their intentions, I think we can say that it didn't work. The poorest beneficiaries are as discriminated against and demonised as they've ever been. I don't know to what actual extent the tearing apart of the body politic was a direct consequence of neoliberal reform (and to what extent the preceding egalitarianism is in fact a myth) but I would say that we are a long way away from piecing together (or back together, as the case may be) a sense of society that is more than a sum of individual competing interests. While we may see promoting a radically alternative view as a long-term political goal, our campaigning on issues such as disability should take into account that there is a very serious deficit at the present time.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Emma Hart, in reply to giovanni tiso,

    I don't know to what actual extent the tearing apart of the body politic was a direct consequence of neoliberal reform (and to what extent the preceding egalitarianism is in fact a myth)

    I was thinking about an aspect of this the other day, when I realised that, as far as structural assistance went, it was easier for my mother to walk out of an abusive relationship and survive financially under Muldoon than it would be if I did it now. Benefits were at much higher levels in real terms, penalties for earning extra money weren't as high, she could capitalise the Family Benefit and get a govt-subsidised 3% mortgage, which meant she could buy a home for herself and her four children on what she earned working part-time in the laundry of a geriatric hospital.

    Christchurch • Since Nov 2006 • 4651 posts Report Reply

  • Jodi W, in reply to Hilary Stace,

    Yeh we defiantly don't have to be reassessed. Just lack of education of frontline staff. I am aware of the MoEs policy of inclusion by 2014. I know that students with special education needs are a priority group but I'm yet to see a majority proportion of schools showing good practice or culture. Hopefully it will keep improving in next 2.5 years for my daughter

    Since Apr 2013 • 2 posts Report Reply

  • Bart Janssen, in reply to Emma Hart,

    it was easier for my mother to ... survive financially under Muldoon

    There would be a large group of people, including me, who would argue that NZ was fundamentally richer at that time. We still benefited from guaranteed markets for primary produce and had built up a lot of credit from feeding post war Europe. I tend to think as a country what we produce is harder to sell to the world now and we haven't been very good at producing the most valuable things in the world (and there is huge variability, some businesses have done very well).

    I guess I'd say overall we have less to to spend now in NZ. However I'd also say we have chosen to give more of what we have to those who least need it - tax cuts were a terrible idea that did nothing for the economy and just made the gap between rich and poor bigger. Why National isn't excoriated daily for those cuts I don't understand.

    But as well as choosing to gather less revenue from those who can afford it this govt has chosen to spend the money in places where they say it induces economic growth (it hasn't) as well as cutting funding from those who need it most. That is the place this thread started, a decision to save money by reducing the assistance the least advantaged in our society rely on to get education. I'd be surprised if the decision resulted in saving more than a couple of million dollars at the cost of tremendous social harm.

    And not even a publically stated decision that people could debate, instead it seems like it has just been a quiet word in the ear of administrators to change "quotas".

    Auckland • Since Nov 2006 • 4461 posts Report Reply

  • Hilary Stace, in reply to giovanni tiso,

    I'm taking a long historical view and things are a lot better now for children with Downs than they were when the IHC mothers (and fathers but mainly the mothers) founded that organisation in 1949.

    Let's be positive and hope that every school will eventually follow the 1989 legal requirement that they (willingly) enrol all local children between the ages of 5 and 19.

    Wgtn • Since Jun 2008 • 3229 posts Report Reply

  • giovanni tiso, in reply to Hilary Stace,

    Let's be positive and hope that every school will eventually follow the 1989 legal requirement that they (willingly) enrol all local children between the ages of 5 and 19.

    I'd rather be realistic and observe that given the current stick and carrot approach - where inclusive schools are beaten with a stick, and non-inclusive schools are given extra carrots - this is unlikely to happen in the short to medium term.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Rob Stowell, in reply to Bart Janssen,

    tax cuts were a terrible idea that did nothing for the economy and just made the gap between rich and poor bigger.

    Totally.
    But the story starts in 1986 when Douglas made the most radical changes to NZ's highly progressive income tax rates, and introduced consumption tax (GST) which of course is flat across all incomes (Douglas wanted this for income tax, too.)
    The Ruth Richardson 1991 cuts to social welfare were the next big move. Since we've had some tinkering here and there, but nothing close to as radical. From Labour or National.
    The changes have changed the national conversation. It's pretty hard to find anyone who'll champion 50%+ income tax on the wealthy; or unemployment benefits close to the equivalent of those under Muldoon.
    On the other hand- there's growing awareness of the gulf between rich and poor here. I still find it odd that it's most manifest in concern about 'child poverty' (not that this isn't genuine and terrible.) Adults living in poverty don't seem to matter.

    Whakaraupo • Since Nov 2006 • 2110 posts Report Reply

  • Stephen R, in reply to Rob Stowell,

    I still find it odd that it's most manifest in concern about 'child poverty' (not that this isn't genuine and terrible.) Adults living in poverty don't seem to matter.

    Even bastards who think poor people get what they deserve because they're lazy and shiftless have difficulty saying that the children of those poor people likewise deserve hardship.

    Wellington • Since Jul 2009 • 259 posts Report Reply

  • Russell Brown,

    I was sent this by someone who works with a NZ tertiary institution:

    One of the primary aspects of my job is to make
    alternative exam arrangements for students with disabilities. As a
    disability rights advocate, I routinely find myself between a rock and
    a hard place.

    Having worked in the United States, where students can request
    arrangements just by stating in writing they have a disability (though
    that's changing a bit), the need to provide such stringent
    documentation was a bit surprising to me. Our university doesn't
    strictly follow NZQA/NCEA requirements, but we're aligning ourselves
    with them more and more.

    One of our problems is that of resources. The government doesn't
    really provide all that much funding to pay for alternative
    arrangements. The money goes to the "disability services" team who
    then reimburses us for expenses. A student who requires a
    reader-writer and has 4 exams in a semester generates about $800 extra
    to run exams (reader-writer wages, separate room fees, extra staff
    time to manage the arrangements, such as packing, labeling,
    scheduling, bla bla bla). We have about 300 students requiring
    alternative arrangements each semester. It's a significant amount but
    at the same time a drop in the bucket. Thing is, we're still looking
    at tens of thousands.

    The advocate in me thinks "cost of doing business" and "have to treat
    students equitably" and "if we don't give kids a good education we're
    setting them up to be beneficiaries", etc. Preaching to the choir here
    I'm sure.

    The problem is, every year we're getting more and more requests for
    alternative exam arrangements. About 20% more from one year to
    another. And we're less and less resourced to provide them. We *have*
    to draw the line somewhere. And that begins with appropriate
    documentation. Which is cumbersome and expensive to get for students
    and/or their parents.

    I don't know what the answer is. I really don't. The system's fucked
    and doesn't feel like it'll smell good anytime soon :(

    Auckland • Since Nov 2006 • 22850 posts Report Reply

  • giovanni tiso,

    You've just described how inclusion works in primary schools.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Hilary Stace, in reply to Russell Brown,

    Same story in secondary schools.

    But I heard one positive story last week about a local secondary school (although not about assessment support) from a parent. They had been at schools in many countries and the local one was the only one where the student had actually been taught by the teacher, not the teacher aide.

    Wgtn • Since Jun 2008 • 3229 posts Report Reply

  • Sacha, in reply to Bart Janssen,

    You are right though the purely moral argument can sway political opinion, but as you say it needs significant effort by a group of advocates who can shift public opinion.

    It does. Coherent, competent effort.

    Ak • Since May 2008 • 19745 posts Report Reply

  • giovanni tiso,

    I realised I made it sound like a (relatively) simple matter of reasoned persuasion. Protest will have to play a role as well.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • BenWilson, in reply to Bart Janssen,

    I know he didn't mean it that way but it is the political equivalent of the blonde joke.

    Well, I wasn't saying you were stupid. Just that the way you reason is not IMHO the way the majority does.

    I'd agree with Gio that if aggregate economic outcomes are used as the totality of the reasoning, then the disabled are almost always going to miss out. I find it pretty hard to imagine my 50-something year-old aunt, who is severely intellectually handicapped to the point of having a mental age of something like 3 or 4, coming up as anything other than a cost on any balance sheet, considering her care is about one half of a full-time live-in carer in a premises dedicated to people with similar disablement. She never has and never will contribute any net positive economic good for NZ. But her ongoing care is a basic human right, the entire argument for it comes from a sense of right and wrong. I don't even think one needs to be left wing to see that, although one might need to be some kind of libertarian nutcase to fail to see it*.

    *Actually a better terminology might be "to unsee it"

    Auckland • Since Nov 2006 • 10657 posts Report Reply

  • Hilary Stace, in reply to BenWilson,

    Your aunt does provide an economic good for New Zealand - an employment opportunity for the carers, and a business opportunity for the residential care provider. So she's very valuable economically,as well as human-ly.

    Wgtn • Since Jun 2008 • 3229 posts Report Reply

  • BenWilson, in reply to Hilary Stace,

    Your aunt does provide an economic good for New Zealand - an employment opportunity for the carers, and a business opportunity for the residential care provider.

    Right, but the government pays for all of that. So the net balance is a loss. The government is not going to treat disabled care as an income producing asset. The same goes for other cost centers like health and education generally, but there is the argument that the workforce they create and keep healthy is worth the money put in, in eventual tax income for the government. That argument is very tenuous when you consider cases like my aunt. There was never a prospect of her earning money upon which tax could be charged.

    Therefore, by implacable logic, if she deserves care, it is not because of any economic benefit in the care. It is purely because she needs it, and she is human so she should be treated as one. I'm deliberately choosing the most pathological example I know of, to make the point.

    Auckland • Since Nov 2006 • 10657 posts Report Reply

  • Kyle Matthews,

    My kids are fine, though, that’s the thing – to echo what others have said. If we write on this board chances are we’re the lucky ones.

    We have the same in my family where my niece has DS. Two parents who have learnt to be pushy to get things for her, and two grandparents (one of whom is a professional in the sector) who can be downright aggressive. I feel sorry for any bureaucrat who gets in their way.

    It's solo parents with three kids, one or more with disability, little education themselves, limited support networks that are getting right screwed.

    That was a pretty traumatic conversation to have to have with some moron about my 3 month old. I am sure I will have some gems to come

    Good luck. Make sure you sign up for the DS newsletter and any support networks. I'd be wary about Saving Downs, I suspect there's a strong crossover with anti-abortion ideas in there. I think that if there was a magic button that could be pushed so that another DS baby would never be born, they'd go to court to stop us pushing it. Schools are a long way down the track, but if you find a school that supports DS kids well, you might have to think about zones and your location :(

    I’m being selfish because I want NZ to have a better economy and social structure – I will benefit from that as much as every one else will benefit.

    I'm with Gio. If we argue it's better economically or socially for society then all of a sudden we have to prove that point and the opposition can try and disprove it. It's what the anti-smacking legislation got bogged down in. Do children have the right not to suffer physical abuse? If the answer is yes, evidence that it's good for them or bad for them or does them no harm is irrelevant. If children have the right to education it doesn't matter if it's better for NZ for them to have it, they just get it.

    Since Nov 2006 • 6243 posts Report Reply

  • George Darroch,

    I’m with Gio. If we argue it’s better economically or socially for society then all of a sudden we have to prove that point and the opposition can try and disprove it. It’s what the anti-smacking legislation got bogged down in. Do children have the right not to suffer physical abuse? If the answer is yes, evidence that it’s good for them or bad for them or does them no harm is irrelevant. If children have the right to education it doesn’t matter if it’s better for NZ for them to have it, they just get it.

    Quite. We don't get gay marriage advocates arguing that their marriages will be good for the economy. (They almost certainly will be). They argue rights and love.

    WLG • Since Nov 2006 • 2264 posts Report Reply

  • giovanni tiso, in reply to George Darroch,

    Quite. We don't get gay marriage advocates arguing that their marriages will be good for the economy. (They almost certainly will be). They argue rights and love.

    On the flip side, let's all be reminded of the difference between equality and equity. Marriage equality has taken so long to conquer *and it doesn't cost anyone a penny*. Imagine if there had been a bill attached somehow.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

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