Monday, 30 March 2009

No country for old carers

Australian testimonio of policy that failed

Sue’s story, so far

In this morning’s issue of The Australian Sue Corrigan (2009) publishes an extensive statement of the dreadful plight of so many Australian families bringing up young children with disabilities, and then caring for them as adults.

Back in the early eighties Sue was a bright-eyed young journalist living and working in her native New South Wales:
When state government ministers and senior officials decided, in the early ’80s, to close the often gruesome institutions in which disabled people were locked away, commonly from early childhood, they promised to establish small group homes in suburban streets, staffed around the clock, for all those adults too disabled to live independently. Parents were assured that if or when they could no longer care for a severely disabled adult son or daughter at home, high quality, community-based houses would be there to take over.
As it happens, I know only too well about those promises. As press secretary to Laurie Brereton, the then state government health minister who began the process of “deinstitutionalisation” in NSW, I wrote many of the media releases and speeches trumpeting how wonderful it would all be. At the time, governments around the world were moving to replace institutions with alternative, home and community-based services.

In 1989 her son Steve was born, severely disabled. The long familiar story that followed had a twist, the family’s moving to England as Australian ‘disability exiles’ to find better services, including not least Conductive Education. And now, widowed, back in NSW, as a carer…
In the year since our return, Shane and I have encountered nothing but kindness and support from the many dedicated teachers, therapists and respite care workers, among numerous other people, who devote their lives to helping people with disabilities and their families. Shane and I have been blessed by their compassion. But they work within what is, with too few exceptions, a deeply dysfunctional and inequitable system. Federal and state governments allocate billions of dollars of taxpayers’ money each year for disability services, and charities raise millions more, but after that money has trickled down through layer after layer of bureaucracy, red tape and administration costs, then been divided among a splintered maze of service providers, not a great deal remains for actual service provision.
In her first years in England Sue campaigned for Conductive Education (and a few times since, too!). Now back home in NSW she is campaigning for social justice for Australia’s disabled and the families who care for them, for radical reform to take central stage in the draft of Australia’s first National Disability Strategy to be published later this year.

Down Under: at the bottom?

People in other English-speaking countries might draw breath at what she describes and Poms perhaps be particularly surprised at the favourable comparison that the situation in England is awarded on the basis of Sue’s experience. Truly, there is always somewhere that things are worse.

Is Australia really the worst place to bring up a disabled child in the English-speaking world?

Sue’s testimonio

Sue’s article presents some impressive statistics, but its strongest impression is conveyed by the personal stories that she recounts, including her own. Such personal reports an essential part of any comprehensive attempt to understand the world, and it really is rather pathetic to cast them aside, as some people do, as ‘anecdotal evidence’.

If you want to bull them up, the technical term is testimonio:
A testimonio is a first-personal political text told by a narrator who is a protagonist or witness to the events that are reported upon. These tellings report on torture, imprisonment, social upheaval, and other struggles for survival. These works are intended to produce (and record) social change. Their truth is contained in the telling of events that are recorded by the narrator. The author is not a researcher, but rather a person who testifies on behalf of history and personal experience.

Understood this way, a life history document is an entry into life, a portal into a culture different from that of the reader. Such texts become vehicles for self-understanding. They connect memory and history to reflexive political action. They create spaces for the voices of previously silenced persons to be heard. In this way the post-modern historian-ethnographer helps create liberating texts.
(Denzin and Lincoln, 2000, pp. 374-375)
If you want to assemble ‘evidence’ for politicians, the media and for fellow citizens (voters) remember to have some decent statistics, but remember the essential contribution of the testimonio too, that is what they will remember.

Carry on campaigning

The best of luck to Sue and those whom she gives voice, and let us hope that ultimate success on this broad font will permit her one day to return to her campaign for Conductive Education.

Another of those coincidences: Conductive World had reason to cite Sue only four days ago (Sutton, 2004), under her married name of Sue Reilly.

Nice to know that so many of the Old Guard are still in the saddle, the ’young parents’ of twenty years ago now taking up their well-honed campaigning cudgels on behalf of young adults and their families/carers.

Come on the youngsters: la lutta continua!

Notes

La lutta continua! Der Kampf geht weiter! No surrender!
Revolutionary slogans

References

Corrigan, S. (2009) The struggle for care, The Australian, 30 March
http://www.theaustralian.news.com.au/story/0,25197,25262629-5012694,00.html

Denzin, N., Lincoln, Y. (eds) (2000) Handbook of qualitative research, London, Sage

Sutton, A. (2009) Awareness: where has it all gone ? How to get it back, Conductive World, 26 March
http://www.conductive-world.info/2009/03/awareness.html


5 comments:

  1. Andrew

    I have read Sue's article and a powerful, not to say disturbing, testimonio it is.

    I did indeed draw breath at her description of services in England. But wondered if these more closely reflected her experiences in the UK when her son was approaching adulthood rather than any extended experience of caring for him as an adult here?

    Tonight, my wife has gone to bed, exhausted again. I shall do the same when our adult daughter is settled, which could be an hour or more yet. We will wake, with her, about 5.30am, caring for her until she goes at at 7.45am and so the daily cycle will begin again. Right at this minute, neither of us sees much future, for our daughter or for ourselves, other than just getting older until we can do no more.

    Thankfully, our daughter goes to Paces Monday-Friday; a resource that I was instrumental in creating, which I wish others (parents as well as adult children) could benefit from, so important is it to her and ourselves. What she and we would do if her Paces' group did not exist, I have no idea.

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  2. My heart goes out to all and every single parents who have to take care of their child, sometimes children who have different needs. Reading your comment makes it more personal as I know you Norman. It is hard enough to be a parent anyway, as we were never taught and prepared properly how to be one. We can only go on by the way we were raised and by our own instincts.
    If there is a consolation… through my work I came across parents who actually adopted children with special needs and some often after they have lost their own disabled child. The government puts money into care services. Is there anyway we can somehow influence how these services are run, to get a really useful and constructive package which helps both parent and child, carer and anyone who needs care.
    Is there anything I can do personally? If anyone out there knows please let me know.
    Warm Regards, Judit

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  3. 'I sympathized very much with Norman when he wrote about his and his wife's role as carers to their daughter, especially since he did something positive for her (and themselves!) in setting up Pace.
    Judit Szathmáry's answer was also extremely warm and personal. We all know that professionals should not allow themselves to get completely sucked in to clients' lives, but it must be hard not to, for a real Hungarian conductor, they have too big a heart.
    Yes, there is a lot one can do to influence the Government on how they distribute the vast sums of money allocated to social care in Britain (special educational issues meet a much greater resistance).
    I am on various Carers committees, locally and nationally. Carers' lives have been made a lot more bearable compared to what was deemed acceptable in the past. I still think that once destiny gives you this challenge (which changes everything in your life) it is best to be positive and pro-active, in one's own interest as well as in the interest of the effected family member.'

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  4. Ouch!

    '...a real Hungarian conductor, they have too big a heart'.

    Not uniquely, nor indeed universally.

    As for the rest of this thread, it has raised such questions that I have thought it better to address them in a new and separate item:

    http://www.conductive-world.info/2009/04/personal-and-political.html

    Thanks to you all for the challenge!


    Andrew.

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  5. Dear Emma,

    Thank you for your kind comment. I am sorry for not responding earlier, but I just discovered your comment this morning. As today was the last day of our Easter Course for the children, I couldn’t write earlier.

    Norman is more of a colleague to me than a parent. I met Norman a long, long time ago and we worked together purely as eager individuals who wanted to make a difference. We never worked together as a parent and a conductor.

    Emma I was serious when I asked what could I do personally. If there is a way to influence how the care services are run in Britain I am more than willing to participate. I would be grateful if you could e-mail me so we could make a start. My e-mail address is judit.szathmary@virgin.net

    Kindest Wishes, Judit

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