Posts by Hilary Stace
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Up Front: Another Brick in the Wall, in reply to Sacha,
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I suggest gendered labelling of desired characteristics will not help with that.
I am not suggesting that 'desired' characteristics are gender labelled. Just that there are gender labels and roles now. These should be challenged in all sorts of ways. But that is not to deny the current situation.
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Up Front: Another Brick in the Wall,
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I agree. But this is not about essentialism (ie women are naturally better at caring), but about gender politics, which is why I keep framing it as such.
To change it also requires an increase of status of 'disability' itself. At the moment when you look at the hierarchy of status and expertise around disability, those who spend most time in caring roles are likely to be women, unpaid or poorly paid. Whereas the more 'expert' the person is (eg a clinical specialist) the less time they will spend with the child but the more they are paid, the more likely they are to be male, and the greater status in society they have.
I also have fears about the new disability services mantra of increasing 'natural ' ie free supports. That also means more unpaid work for women.
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Up Front: Another Brick in the Wall,
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I'm sorry,Sacha, but disability care and blame (eg anything by Michael Laws) is very gendered.
I would love for it not to be. But until we have gender equality in the care industry, in disability education (eg teacher aides) and throughout the disability support sector, in single parenting of disabled children, and when disability parents' meetings and conferences have better gender representation than 90:10 women/men, then I might reconsider.
How do you suggest we move it in a more useful direction?
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Up Front: Another Brick in the Wall, in reply to Sacha,
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Yes but in my experience that person is most likely to be the mother - hence I call it the mother factor. Some lucky children have two activist parents and they share the advocacy, but I would say that most disabled children, for a variety of reasons, only have one - their mother. This might offend those activist fathers and friends on this thread and those who I know personally, but I fear they are not representative.
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Up Front: Another Brick in the Wall, in reply to Sacha,
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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. That mother of the two autistic men in Christchurch is a very good illustration of this theory.
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Up Front: Another Brick in the Wall, in reply to giovanni tiso,
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If we write on this board chances are we’re the lucky ones.
My research conclusions that love and luck are the intangibles that make a positive difference in outcomes for autistic or other disabled children has been reinforced for me over many years. I now believe there is also a significant ‘mother’ factor. This was illustrated so well by this week’s story of the mother of the autistic adult men in Christchurch who were temporarily homeless. The news provided a hint of the importance of the the lifelong mothering/advocacy/strategist/planning role required for access to some of the basic rights to health, education, housing etc. I often come across young disabled people without mothers and they are not doing nearly as well (eg housing, education, employment, benefit support) as those with them.
Sometimes you can substitute ‘father’ for ‘mother’, but that role is much less likely to exist for disabled young people, and in my totally unscientific analysis, not as reliable an indicator for good outcomes.
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Up Front: Another Brick in the Wall, in reply to Sacha,
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Sacha, I think this might be an overly rosey view. Certainly doesn't happen if you look like you might already have more than your quota, or could possibly be one of those dangerous single mothers.
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Up Front: Another Brick in the Wall, in reply to giovanni tiso,
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Or NASC assessors.
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Up Front: Another Brick in the Wall,
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There has been a movement, led by disabled people in the sector, to remove the levels of gatekeeping and replace it with a simple geographic system of Local Area Coordination, as used in other parts of the world. A coordinator works alongside all the disabled people in that area who come to the coordinator for help and guides them through the mazes and finds appropriate services and support specifically for that person. The local area coordinator becomes a bit of an expert on services available in the the local region and various impairment conditions and person centred facilitation for each person and their family. Apparently there is a great deal of job satisfaction and they stay in the job a long time and people feel supported, and all these nice things means money saved over time.
However, when NZ had a go at it, they decided to put the LAC role on top of all the other gatekeeper and fragmented roles, rather than clearing them out and starting again. It is apparently not working very well in the demonstration area (Western Bay of Plenty) and getting expensive. (It is called the New Model if anyone wants to look it up on the MoH website).
An even better system would be to have a local area coordinator who worked with and alongside the whole 24 hour person, which would mean coordination across education as well as home, employment and community. But far too simple an idea.
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Up Front: Another Brick in the Wall, in reply to Lilith __,
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Just another example of the complexity and fragmentation of the system. Same name different rules. Just wait till we get two lots of Supported Living when the benefit system is 'reformed' in July. One is the the new name for the Invalids benefit and the other is a MoH programme. (And I hate to think how many beneficiaries details will be 'lost' or payments botched in the transition to the new benefit regime.)