Author Archives: activevoice1

About activevoice1

Let’s use strong, simple, direct communication when we want the health, education or political systems to provide the targeted supports children with disabilities need to thrive, learn and participate in life. Let's be (and say) the change we wish to see (thank you Gandhi).

Disability = Strength

Maybe people in the Australian education system can stand on their heads and view this new paradigm.

Where a gorgeous 5 year-old boy who can’t talk or walk provides the strength and succour his little friends need on their very first Kindy orientation day at big school.

http://inkyed.wordpress.com/

I like the way our kids are changing the world.

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Yes we can

Well done Americans.

To an Australian watching from the other side of the Pacific Ocean, the thing that struck me most was the mindset attributed to Barack Obama.  Because he was an outsider, not a part of the culture of oppressed Afro-Americans, it didn’t occur to him that he could not make change happen.

And the same must go for us, families of children with disabilities.

We can make change happen.  Don’t even think about accepting 2nd rate treatment.  Fight openly for what we know our kids are entitled to.  We too are making change happen.

Yes we can.

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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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How can I help my son get into trouble at school?

Yes you read that correctly.

Those of you who know us will wonder if there is anything else I can do to annoy the school further. Just asking them to obey the law and provide inclusion supports is proving too hard for too many.

The thing is, the cool boys get into trouble. That’s why they’re cool. Well, they are 13. So Mr S wants to be cool too. I guess he thinks he will be part of the gang that way. Makes sense to me.

So it’s my job – as helpful mama – to come up with some ideas for how he can get into enough trouble to get some cred, but not so much trouble he actually gets into trouble, if that makes sense.

Fortunately I’ve had plenty of experience getting into trouble with bureaucracies in the last 10 years. Something to do with not being able to be told what to do. Especially when my kid is treated differently, as if he is special or something.

So yesterday he wore jewellery to school. That worked quite well because he was told to remove it and of course couldn’t. The whole class noticed the fruitless struggle to lift both arms up to try to undo the neck chain. So it stayed dangling around his neck.

What bad thing can he do next week?

It can’t be obvious stuff like driving the wheelchair too fast because that really gets him into trouble. Although he has my approval for doing that when teachers are not looking and there is plenty of space.

It’s hard enough trying to live within (or gently bend) rules and not get into trouble, especially when the world is not inclusive.

But I’m amazed how much harder it is to try to get into trouble, albeit carefully and with credibility.

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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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What’s wrong with him?

If I had a dollar for every time we’ve heard that question from a complete stranger …

Unfortunately it’s so often the first words – after some serious staring – when people see a child in a wheelchair or using a walking frame.

I’m pleased to say many people – like rollercoasterparenting – give the “correct” response:

“Nothing”

Some of us with older kids have grown rather tired of this question, which we have heard maybe 1000 times.

Very occasionally (well no more than twice a week) we may become a little too loquacious in our response to an impolite, curious stranger:

“Why – is there something wrong with you that you want to tell me about?”

The stranger looks perplexed, mildly shocked.

“You don’t want to tell me about any of your medical conditions?”

Looking very shocked now, vigorous head shaking, sometimes accompanied by the slow dawn of realisation that they have asked a really intrusive, rude question of an adult they don’t know about a child who is sitting right in front of them.

It’s just words, I know, but words are important.

For the record – there’s nothing wrong with him. In fact, I think he’s perfect. He’s a regular annoying, noisy teenage boy with robust good health and poor taste in jokes who uses a wheelchair to get around because that’s easier and faster than walking with the help of a walking frame.

But I don’t discuss my family’s medical conditions in public with complete strangers. Do you?

So the next time you are curious, that’s fine, but think before you speak. And if you ask me about my kid’s medical condition, I’m likely to ask you about yours. In detail. In public.

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How many sticks to build a footpath?

Australia ratified the United Nations Convention on the Rights of Persons with Disabilities on 17 July 2008, one of the first western nations to ratify the convention.

Good. Now comes the hard part – getting various levels of Australian governments, government agencies and people in general to make inclusion policy reality. Time for deeds not words guys. We’d like to receive some inclusion action at least as good as the NSW Government offered to pilgrims with disabilities who visited Sydney during World Youth Day (week).

Maybe the Convention will be a bit of a legal stick. Inclusion is not a noticeable feature of the affluent area of Sydney that I live in; clearly the “carrot” of simply valuing diversity has had no effect. There is a little talk but not much action to enable inclusion for everyone, regardless of ability.

Indeed, my local council cannot afford to provide footpaths/sidewalks to enact their policy of “accessing the community”, despite collecting rate payments from homeowners in an area where most residential properties sell between AUD $800,000 and AUD $3 million.

Council has invited me to spend AUD $20,000 funding the construction of a public footpath on our street, whose development approval they will expedite. Isn’t that big of them? I guess I’ll own the footpath then. As Queen of the Footpath I may let the power go to my head and refuse permission for some people to “access” my footpath.

I had asked the local council to provide a footpath and a safe road crossing so my 13 year-old son could take himself independently between home and high school. This is a distance of under 1 kilometre, which currently we drive in our van as I won’t let him drive his powerchair on a busy road, mean mother that I am. Although, there is no accessible parking near his school anyway.

I can’t write to Council rejecting their offer of privately funding a public footpath until the steam has stopped coming out of my ears and the expletives stop whirling around in my head. In the meantime, I will send them this:

NOT ACCESSIBLE

NOT ACCEPTABLE

And a link to the UN Convention website. Article 9 is a good starting point – here’s an except:

On the fundamental issue of accessibility (Article 9), the Convention requires countries to identify and eliminate obstacles and barriers and ensure that persons with disabilities can access their environment, transportation, public facilities and services, and information and communications technologies.”

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Where the rubber hits the road

Secrets to organisational change …

No I’m not talking about a big corporate. I’m talking about a school.

When I worked in corporate communications, I saw how successful organisational change requires the CEO’s enthusiastic and visible ownership. Senior management walking the talk. Structures and systems in place to reward desired behavioural change.

But the crucial piece was changing the attitude and thus the behaviour of the front line. So there were many organisational restructures and staff changes, where people were “let go” because they didn’t fit whatever the the corporate culture was.

So if we apply similar concepts to the school yard, please tell me what to do.

All the big public education kahunas are on-side with my modest expectation that technological learning supports and training should be supplied as needed by teachers and schools to students, one of whom happens to have a physical disability and is my son.

From the CEO down, everyone says they agree with me. They comment kindly on my “extraordinarily articulate” examples and proposed solutions (amazing for a mere parent). I tell them it’s easy to write convincingly when your child’s life hangs in the balance. OK that’s a bit over the top. But I do have strong views about the role education and technology plays in enabling people with disability to make the most of their life.

So education senior managements gets it. They funded a report which recommends learning technology support and training. And they’ve funded the technology and teacher training. Too easy you’d think. But where the rubber hits the road – the school – well that’s a different story.

Relatively simple implementation of training recommendations and software installation still has not happened, 13 weeks after the school year started. My son is still being given ancient, badly photocopied handouts to work on, instead of EVERYTHING being on computer. He is still sitting in class watching the teacher do maths, without the necessary software to do it himself. By himself. Not with an aide scribing.

One teacher even reported that my son did not bring the “required equipment” to class. That would be his laptop (which is always in his class). Possibly she believes he should bring to her class a plastic covered exercise book which he can’t write in.

The latest incident was where a teacher couldn’t be bothered allowing my son to present his “talk” via a power point presentation he had laboriously typed with one finger for 3 hours. No amusing sound effects or images that say a million words or imaginative key points that enable my son to share himself with his classmates. Nope. Just sit in your wheelchair and read your talk to the class. Bet the class was enthralled.

One the education execs whom I totally respect phoned to tell me he was “incandescent with rage” at this latest educational setback inflicted on my son at his public school. He loved the powerpoint preso my son did. This education exec is blessed with imagination, empathy and a cool vocab. I wish he taught my son.

Why can’t all teachers be willing to use whatever it takes – such as basic computer software – to engage kids with learning? Why is education so monumentally boring? Or are we just very unlucky with some of his teachers and inadequate school organisation?

Organisational restructure, redundancy, “letting go” staff – now it means something real to me. My son’s education and self-esteem is being damaged by the attitudes of people who no longer care, and see no need to change their attitude or behaviour.

It’s time they were “let go”.

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Hope crosses the political divide

On 17 March 2008 at around 8:30pm the Australian Federal Parliament secured bipartisan support from members of the two major political parties (Australian Labor Party and Australian Liberal Party) to support a motion by the Member for Gilmore, Mrs Joanna Gash, to improve the services, support and care for Australians with disabilities and their families/carers.

This is the motion:

That the House [of Representatives]:

Calls on the Australian Parliament to adopt a bipartisan approach to improving the provision and delivery of disability support and care to Australians living with severe and permanent disability, their families and/or their carers;

Considers that for too long the ball of responsibility for the funding and delivery of disability support and care has been kicked between Federal and State governments and that game has to end; and

Considers that the Federal Parliament must address the need for improved disability funding, support and services to see progress is continued beyond the individual terms of governments and is coordinated at such a level that intergovernmental disability service provision is clear, concise and indisputable.

Thank you to those politicians who initiated, debated and supported this motion in Parliament. Your support means much to many, many family carers of adults and children with disabilities.

The glaring discrepancy between the life choices of Australians in general, and those with a disability and their carers, is unbelievable. It is truly horrific that an affluent nation like Australia could choose to continue to be so oblivious to the circumstances its most vulnerable citizens are forced to endure.

As the motion implies, families caring for a person with a disability simply don’t care whether State, Federal or local politicians and government departments are responsible for support and service provision to people with disabilities and their carers.

We want national political recognition of the terrible problems that have arisen due to lack of government ownership of this important humanitarian and economic issue.

We want input into long-term, funded, targeted, functional solutions that meet our needs, not the agendas of a government department or disability advocate.

We trust that people with disabilities and their family carers will be invited to directly share their views, experiences, and proposed solutions to any Parliamentary groups, committees or drafting of legislation which may occur.

Baby steps, let’s keep it moving. Nothing will change unless we make it happen.

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School gets in the way of education

The link below is a newspaper report that a teenager with cerebral palsy is suing the Queensland State Government for discrimination after allegedly being told to avoid certain subjects at a Brisbane government high school due to his disability.

http://www.news.com.au/couriermail/story/0,23739,23307111-3102,00.html

The newspaper reports that the student’s mother was allegedly told that her son’s English was only at a Year 3 level and “to go home and bring him up to a grade 4 level”. However, her son had just received a B for English in Year 10.

When the student moved to a private school, he performed better in English and German in his final year than previously. He wants to be a lawyer.

It seems the government education system judged this young man’s intellectual capacity based on his physical disability and cortical vision impairment. His disabilities make it hard for him to read, write or type because of being effectively blind during exams and being unable to control his arms.

So why couldn’t he use alternative methods to demonstrate his knowledge? Maybe provide oral assessment tasks or use voice recognition software to convert speech to text for assignments and assessments.

There is a huge variety of learning technology to let us step outside the tired old square of writing our opinions/reports on bits of paper. The State education exam markers are surely capable of assessing the academic or other value of a variety of work, even if the process did not include the physical act of writing words on paper?

As we have said before and will no doubt repeat many more times, the education systems need to stop incorrectly judging students’ learning abilities based on their medical diagnoses. Instead they should ask one simple question:

“What educational supports or tools does this student need to be able to learn?”.

And then provide them. It would enable many more students with disabilities to leave school with the skills to gain meaningful employment or undertake further study. And we do need more skilled workers, don’t we?

I guess this young man will excel in law. And we need him.

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