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Good evening Laurence, I am starting to enjoy this dog fight. We seem to get to the real issues now. When you say that parents were seen as the enemy, and it still goes on, the attitude was 'we know best, do as you are told, shut up and go away. This to me indicates an enormous arrogance born out of enormous ignorance. As it created a situation of authority v dependence, there always was the threat of victimization - plenty of evidence of that, still, and betrayal of trust. No wonder families had no confidence in the ability or willingness of the world - as they knew it - to look after their children, and learnt the hard way that nobody but nobody was to be trusted. It was as clear a demonstration of 'charity maintaining poverty' as any Dickens or Bronte story, and 'the lost generation' and the Neerkol' case here in oz are very recent examples, not with disabled children, but with children disenfranchised and marginalized for other reasons. The change in attitude has been from the experts who have discovered that 23 year old academics who have read a book, may in fact not know everything. A bit of humility goes a long way; they (you?) suddenly discovered families were a massive resource. The knowledge and experience - not holistic, but on the narrow base of their own family, added up, and once parents were discovered it set the scene for an attitudinal change, from confrontational to cooperative. We parents are a pretty desperate lot, used to clutching at straws, and so we have welcomed this and responded to this by telling you part timers what we really want. The next step is the hardest, that is convincing governments that spending money on disability is not optional, like charity, but a human rights issue. Also, the more you spend, the more the whole community benefits. That is the battle I am engaged in, and so far my batting average is zero. Have a good weekend, rgds John -----Original Message----- From: Laurence Bathurst <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: 17 July, 1999 15:30 Subject: Re: Abuse & People with Disabilities >Hello Judy > >At 09:23 AM 7/17/99 +1000, you wrote: >>"Abuse" is a pretty loaded word these days, and has the effect of >>foreclosing all further discussion. >> >>It also has a definition as broad as you want it to be. >> >>So it's a brave person, and an even braver parent who will step in and >>challenge research findings. >> >>Notice how quickly the climate has changed from the support that ought to >>be expressed for John Homan's family and their struggles, to carping >>reminders that actually half of the parents in someobody's uncited survey >>are "abusive". >> >>All of a sudden the focus is off the majority of parents who struggle on >>to the best of their ability, who organise themselves politically on >>behalf of their children, who are pragmatic and loving and caring and >>exhausted and pick themselves up again and again. These >>are the sorts of parents of disabled children that I'm personally familiar >>with. >> >>And the disability rights lobby doesn't do itself a long-term service by >>painting all people with disabilities as helpless, lily-white, victims. >>PEople with disabilities are perfectly capable of the whole range of human >>responses, and yes, they too are perfectly capable of being abusive. >> >>And of course, many parents have disabilities too. As the child of a very >>"abusive" woman on the autistic spectrum, I know what I'm talking about. >>(and no, I don't "pass it on to my child" (gotta pre-empt the >>parent-blamers), who herself has a very short fuse, and used to lash out >>and plug me one when she couldn't communicate her feelings. (Hope she will >>grow out of it by the time she's bigger than me.) >> >>I find this constant setting of parents against children very ugly and >>painful. Yes, some of you will retort, in an attempt to make the whole >>issue comfortable - it's all a social construct caused by a lack of social >>services, disabling attitudes etc . I agree, but only if we do a reality >>check and agree to the whole gamut, that biological limitations have their >>frustrations also. >> >>Judy Singer >> >What is interesting is the politics of the 'them and us'. I was introduced >very early on to the notion that parents were the biggest barrier to the >self determination of their disabled children. In 'disability services' my >observation (or should I say voyeurism?) was that with the advent of the >Principles of the Disability Services Act, parents were seen generically as >'the enemy'; the thing we needed to get rid of for the children (adults) to >have any chance of self-determination. I found at the time, this to be >fairly accurate. I was working in an residential institution with >adults. The parents then, were of a greater age. I would hear comments >all the time from parents saying to me (regarding their son or daughter) >"But they can't make their own decisions. They don't know what they want - >they're disabled you know?" It was very much about "they can't do this" and >"they can't do that". > >I always wondered why that was so and I did ask some parents about it. FEAR >was the general response. Guilt was another. What came with the >deinstitutional process to community care was an inherent message >"Institutionalisation is a really bad thing. You did the wrong thing when >you put your child in this place". The fear seemed to be about having to >take responsibility (if I read it correctly). That without the cloisters >of the institution, they now had to worry about their child's welfare. The >one comment that many many parents made when news of downscaling came to >them was "I was told my Johnny would have a bed here for life". In >conversation, it became apparent that most of these parents were told by >their doctors at the time of their child's birth, that the only decent >thing to do was to have them 'put away'. That message was reinforced by >many others in the general community too. How awful to be told to do that >and then 40 years later to be told you did the wrong thing. No wonder >there were such attempts to keep their children as reliant on assistance as >possible. It was their mission to show that their children were not >capable of independant living and independent thought and choice, for to do >so legitimated their actions all those years ago. > >When I then went to work for a community based organisation with a younger >cohort, I was awakened to the fact that Parents seemed to act on whatever >advice the 'experts' give them. I found then that to work with the parents >as allies seemed to give the greatest result for their children. It was >refreshing to now work with parents who were striving to create >opportunities for their children to achieve independence. That was not >always easy for them. Seeing little Johnny off to his first camp and first >separation was hard. Seeing the teenaged children go off on an outing with >a few friends without any adult supervision (or same age volunteers) for >the first time was nailbiting stuff (for me too). > >John Homan has pointed out that I can engage and disengage as I need to. >Yes I was very aware of that at the time I was working in this area. I >felt very uncomfortable at times with my position; as one of those >'experts' who have all the answers and the politicaly correct guidebooks >for parents to follow. And yes for me it was a job and I did leave after a >few years of doing it. The only thing that I can take comfort in is that >their children did have some undeniably good experiences which fostered >their self determination and that my awareness of the power relationship >between myself, the children and the parents that existed was potentially >destructive. What the awareness did though, was to make me work in a way >that was allied with the parents and the child. To provide reassurance >about the types of decisions they had to make and to be there to talk to. >So John, I may be in the position of a voyeur but at least as a voyeur I >get to see what goes on and i can ensure that services then aim to meet the >many hidden needs. The parents I worked with in that organisation were the >best parents in the world! > > >With best regards > >Laurence Bathurst >University of Sydney >School of Occupation and Leisure Sciences >Faculty of Health Sciences >East Street (P.O. Box 170) >Lidcombe NSW 1825 >Australia > >Ph+ 61 2 9351 9509 >Fax+ 61 2 9351 9166 >E-mail [log in to unmask] > >Note: This is the e-mail address for my home as well > >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ >There is not one shred of evidence that supports the notion that life is >serious. >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%