Tag Archives: Australia

What do carers need? Don’t ask – you might be told

Is it just Australia that is unbelievably backward at coming to terms with people with disabilities and the family members who care for them?

Or do other countries assume you are not capable of identifying what can be done to improve the lives of family members with disabilities? As if your 24/7 experience doesn’t quite cut it in the search for evidence of what carers need?

The Australian Government and NGOs like to call us “carers” – most of us just refer to ourselves as mums, dads, grandparents, children etc.

Anyway, whatever they want to call us, the newish Australian Government has yet another Inquiry into carers underway. They were a bit shocked at the number of individual submissions they received (1600 + I’ve heard).

And now there is an online forum for those of us who want to take every opportunity to tell it like it is. It’s called Carers Virtual 2020.

Some of the comments on Carers 2020 are heart-rending in their eloquent description of what life is really like.

Other posts and comments have kept me giggling for a few days, although their analyses of what needs to happen are bitingly accurate.

And some aim to turn the whole disability/caring paradigm inside out and make it work by investing in people with disabilities and the families who support them.

You might be amazed to know that people caring for family members with disablity:

  • Want control over their lives
  • Are disgusted that they have to beg for equipment from charities
  • Know how to help their adult children live fulfilling lives
  • Need targeted supports relevant to life cycle changes
  • Expect investment in their children with disabilties while young to maximise their opportunity for full social and economic participation in adult life

In short, this inquiry – like every other carer inquiry – spells it out plain and simple that “carers” want the service providers, academic researchers, brokers, advocates, government agencies and everyone else making a living from Australia’s burgeoning “disability industry” to stop. Listen. Learn. And act based on what “carers” and the people they care for tell them is needed.

Too easy.  But I wonder if anything will change?

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Speak up for people-first language

It’s coming up to Cerebral Palsy Awareness week in Australia.

Time to grab a brief media opportunity to educate people about what CP is and means to people who have it.

Most families of kids with CP look to government and privately funded CP organisations to spearhead public education campaigns.

We want these organisations to publicly reflect what we spend a big chunk of our lives fighting for. Which is for the world to treat our kids as kids, not a medical diagnosis or disability … not different from every other kid.

So how can a positive education campaign end up reducing people with CP to a diagnosis?

With one lazy headline:

CP Champions

Yep, diagnosis first, person last. What happened to people-first language? Like “Champions with CP”?

For a clear explanation of the power of language to value or devalue people, check out Kathy Snow’s words of wisdom.

Words count. Information is power. How can we families convince the world to accept – let alone welcome – diversity, when our kids and friends with CP are presented not as people but as a medical diagnosis?

This is not about political correctness. This is about inclusion, treating everyone with respect. As people first, not just diagnoses.

There were only good intentions behind this CP awareness campaign about an interesting bunch of talented, determined people. So how could a CP service provider and educator get this crucial first impression so wrong?

Sorry TSCNSW. We want to educate the world, not reinforce stereotypes. Please lead by example.

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