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The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Monday, 22 October 2007

Caring Can of Worms

It seems that a can of worms has been opened in the Australian disability sector. A new political party has been established. It's called the Carers' Alliance, and it aims to give carers a louder voice.

Nothing wrong with that you'd say. Yet it seems many disability rights advocates are upset.

An article in this weekend’s newspaper outlined the struggle.

The article defines the people behind the Alliance as “an angry new breed of parent-carers" and outlines the divisions that have grown between the parent-carers and people with a disability. ‘What is good for the carers may not be goog for their sons and daughters. Division is growing between two groups - longtime disability rights advocates whose primary focus is the person with disabilities and new agitators [such as the Carers' Alliance].

The "angry new breed of carers" feel let down by the established disability rights groups, such as People with Disabilities and Family Advocacy because they have not provided sufficient help for their disabled children. The longtime disability rights advocates in the mean time, feel that the carers “threaten to shift the focus from the rights of people with disabilities to the interests of carers.

Much of the disagreement seems to be over housing. While the carers are fed up with carrying the full burden of looking after their disabled children, and there is nowhere for them to go once they become adults. Since institutions have been closed down, parents have carried the can, and there are people in their seventies looking after their disabled offspring at home. The waiting lists for the small housing projects with support staff are years long, and many adults with a disability remain at home. The new breed of cares despise this situation (for their and their children’s sake) and want the kids to move out. Under the current financial constrains, they have ‘proposed a cheaper [housing] model known as “congregate care” or “cluster housing” where 10, 20 and in one case 60 people with disabilities will live together. To the disability rights advocates these are “mini-institutions” hardly better than the old gulags.

One mother, clearly one of the “angry new breed” responded in a letter to the Newspaper:

I have been a full time carer for more than 42 years, with no hope of ever retiring. I am so over the claptrap of the disability advocates who oppose special-purpose facilities for young people with profound disabilities now living at home, screaming that they would be “institutions”. There are at least 55,600 people with severe or profound disabilities over 34 years old and still living with aged parent carers because no one else gives a damn. My deaf-blind and profoundly disabled adult daughter has no more choice about living with me than I do with her – there is nowhere else for her to go (…) More than 92 percent of all cared accommodation is still provided by family carers because the right services do not exits. Get real, disability advocates. What have you done to change this in the past 30 years? Talk about rights to people who have them, because my daughter and I have none.'

Isn’t this absolutely appalling. How did we end up with this division between the carers and their disabled children. All I can say is that this is the sort of crap you get when you don't look after people properly. But then, maybe it's a deliberate technique to silence the disabled community with the old "divide and rule" tactics. The cynic in me wonders if the government is happy. I don’t’ know, but this makes my blood boil. Such needless agony and suffering, of both the disabled person and the carer-parents. Could this really not be avoided?

I've been thinking about this since I've read the article and the response. I have a lot to say about this. Some of it goes into big political debates, some of it goes into the minute detail of daily life for people caring for a child - which becomes and adult one day - with a profound disability. This morning I was hacking away at some weeds and their roots with my mattock, putting all my frustration into it. My brain was racing with thoughts, trying to put my feelings into coherent sentences. I'm not sure I've fully managed to mull things over, but I had to write this out of my system.

In the end, I composed a letter to the Newspaper. I’m sure it won’t be published, but here it is anyway:

Since when did parents become the enemies of their disabled children? Can we pause here for a minute please? We have made many gains with regards to the rights of, and services for, people with a disability. Let’s not forget that many of these have been advocated and achieved by parents. Who created organizations such as The Spastic Centre? Parents. Who brought therapies such as Conductive Education to Australia? Parents. Equipment such as the Hart Walker? Parents. Who set up Special Schools, and fought for the inclusion of disabled children in to mainstream schools? Parents. We don’t want our kids in institutions. We want them at home, at school, at work, in the community – and one day, living their own lives. Independently.

Like any other parent, we love our children. Most of the time, we would shudder at the thought of labeling them a ‘burden’. But we would also be dishonest if we did not admit out loud that, like any parent, we have those moments that we don’t cope too well.. Those moments that we need a break. Carers need help, especially those caring for adults.

This is not just a purely selfish thing. The most heartbreaking moments in parenting a child with a disability are those when you realize that a small achievement towards a full an independent life will never be part of your child’s future. They may never move out of your house. Fall in and out of love. Get a job. Start a family. Drive a car and get a speeding ticket. Have mates to go out into town with and get drunk. All things most parents take for granted. Young people need to move out of the house. This transition is fundamental to becoming an adult.

As long as there are options, disabled adults can chose the type of living accommodation that suits them best. Why could young adults not live in semi-independent bigger groups, in campus style accommodation with recreational and sporting facilities? Many of us had a ball at university. Others will prefer smaller groups. Some will move from bigger groups to smaller groups (after falling in love, say) or vice versa. The operative word here is choice.

So give me a break. Can disability advocates and carers organizations please get off their high horses and start working together to lobby our government for adequate services and facilities for disabled people. If there were decent options and choices with regards to services, work places, and especially living accommodation, the only conflict between parents and their disabled offspring I know of is a well known phenomenon called a generation gap

There. I feel better now.


Horin, Adele, 2007, An Angry Breed: Handle with Care, The Sydney Morning Herald Weekend Edition, October 20-21, 2007, page 33.

Tops, Jean L., 2007, Claptrap over Carers, The Sydney Morning Herald Opinion and Letters, Monday 22 October 2007, page 16


manfred.fabig said...

Hi Heike
Dit is een hele goede brief, die je da gesvhreven hebt, alhoewel ik evt. heel fijne nuances niet zo goed heb begrepen, maar ik den toch van wel. De wereld is nu maar niet eerlijk, is ze nooit geweest en zal ze waarschijnlick ook nooit worden. Je weet wel, vroeger hebben ze 'disables' verstopt. Nu komen mensenn er voor op. Sorry, een super, super, super kleine stap vooruit, maar natuurlijk belachelijk weinig. Schrijf het maar allemaal van je af. Dat doed goed. Sterkte Helma

Jacqui said...

That is a great letter. I hope it gets published.

Anonymous said...

Wow! Well said. It's a pity that most mothers/carers of disabled children/young adults are too busy, (due to lack of support & services) being their childrens carers/therapists/advocates, to get into politics. Then there would be decent policies.