Tag Archives: disability

Abloid Guilt

I don’t quite get it… 

I don’t think I have ever looked at someone else’s child and truly wished they were mine.  

So why do people feel guilty because they have neurotypical children and we don’t?  
Why would they think that I wanted their kids for myself or wanted their life for my own? 

I remember friends talking to me about this not long after our baby girl died.  They were worried about inviting us round to dinner for our regular Friday night get together in case their kids made us feel bad.  I explained they wouldn’t, we love their kids, but they are not our kids, they don’t make us long for our daughter, our daughter’s absence makes us long for her – nothing else.  

They got it, they are smart people and told us after talking about this issue they realised how ‘arrogant’ their notion was… as I said, they are smart people.  

I know we have exacerbated the situation for our ‘non-coping’ family and friends with the outcome of our subsequent child ending up with a severe brain injury… but I just can’t get my head around this ‘guilt issue’? 

It’s a ‘Catch 22’ situation.  You are guilty at the concept or connotations you have of how the parents of the child with the disability are living so you stay away.  

You don’t get to know the child, you don’t get to see or experience the joy they bring, you don’t get to lend a hand if the parents need it, you deny the parents (your friends) your friendship, you deny them their former life and then, because you are no longer involved in their life, you think their life must be really bad – it’s not.

I don’t feel I should make those struggling with their ‘guilt’ feel OK about their shortcomings.  They disappoint me and it is not because I covet what they have – mostly I am sad for what they don’t and who they’re not.  

They are missing out on a whole world of good stuff and so are their children.   

I think ‘Abloid Guilt’ keeps you stupid – they need to get over themselves, over their ‘arrogance’. 

The sooner we can get rid of the current charity based mindset in Australia for those with a disability the better.  

That way those “poor kiddies with the brain ‘owies’ and their charity claiming parents” can simply be “a family”.

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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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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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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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An instinct for inclusion

Many families hold high hopes that today’s symbolic gesture of an apology by the Australian Parliament to the “Stolen Generation” of Aboriginal people who were forcibly removed from their families and communities will ignite an instinct for inclusion, not segregation, which will spill over to other marginalized groups in Australia. Like people with disabilities.

The parallels between indigenous Australians and families of children with disabilities are clear. Many share the same battles of social and educational exclusion, struggle for financial and emotional survival and the prospect of a bleak, segregated, unemployable future.

Senator Neville Bonner, Australia’s first indigenous politician said that change will come only when non-indigenous Australians take the time to listen to what indigenous Australians say they need. Let’s apply the same concept to people with disabilities, starting with education.

In Australia’s various state-based education systems there is still an unthinking acceptance by many apparently compassionate people of the practice of segregating children with various disabilities away from other children, by placing them in “special” schools and classes.

Families are still routinely told by educators that their children with disabilities need “special education” teachers who have “special” skills in teaching these “special needs” kids. But how does segregation from the rest of the world benefit children now, or prepare them to participate to the best of their ability in society in the future? And why do they need to be segregated from other children to be educated?

I suspect this first resort to segregation used to reflect an unspoken assumption that children with disabilities don’t deserve to be fully included in schools, and later in society. They are too different, too far outside the mainstream. We don’t value their diversity. We don’t recognize their humanity. It’s just too hard.

Increasingly some children with disabilities are included in some mainstream classes and leisure activities at school. But many are still educated in separate classrooms designated as “special” education. Yet special education was intended to be an array of tools to cater to the differing needs of a diversity of students, not a separate educational setting.

Families must have the right to choose their children’s educational setting – including a segregated setting – based on their child’s needs. But we also should demand evidence from educators if they suggest segregation, not inclusion.

We could ask: “What supports does my child need to actively engage in learning and socializing with her peers at school?” Instead of: “How can my child fit in to a mainstream school?”

Then the education systems must supply those supports, not leave teachers or students to struggle without them. It could be as simple as installing a hearing loop, supplying a laptop, or organizing and monitoring a friendship group. Or more complex support structures to maximize the learning potential of a child with multiple disabilities.

My son has a physical disability and can’t hold a pen to write. Does that mean he can’t learn? Well yes, if the school doesn’t acknowledge that he needs different learning tools. Radical tools🙂 like a laptop and maths software. Does his education require separation from his friends to maximize his learning? Personally I don’t see a connection between maths software and segregated classrooms. And while ramps will get him some places, they don’t actually educate him.

At school, like every other child, he needs teachers who take the time to get to know him and work with his learning style. He needs an education system which supplies the supports that enable him to participate actively in learning. And he needs to be part of big melting pot of diverse, dynamic kids. That’s called democracy.

May Australia’s apology to our indigenous people mark a turning point where we instinctively welcome diversity and never again assume we need to automatically segregate anyone who is “different”.

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Everyone is a critic

By Terrible Palsy – cross posted at Terrible Palsy.

I first heard about Darius Goes West over at Chewing the Fat. I love Dave’s blog and have read all the crap leveled at him by other disability advocates.

Reading his blog a couple of months ago, I suddenly “got” Dave. Sure, he delivers inspirational story after story but I think that there is very much a place for him in this world for his type of advocacy. We don’t all have the same approach to advocacy, but is any way less right than the other? There is a diverse range of advocates out there – Cilla, Kay Olson, Penny Richards, David, Kathryn, Jodi, ATM to name a few. Each one I carefully listen to their views even though I don’t always agree with them.

Watching the shorts for Darius Goes West, I felt that I was prepared to give it a go despite hearing that dreaded “suffering” word. I ordered my copy and it arrived earlier this week.

I loved it. Darius, you are a hero. And Logan, you have done a fantastic job. The film not only address MD but talks about the ADA and accessibility as well as the job of carers. It does this by appealing to the masses. Maybe, the film isn’t 100% politically correct but I don’t think that is the point, is it?

At around about the same time I watched this film, I read discussion about cut-off dates for resuscitating extreme and micro-preemies. The debate re-ignites every now and again as we all hear the same arguments over and over again. But it also serves to re-ignite the confusion that I hold within myself.

See, I agree with the cut-off dates – currently at 23 weeks, depending upon the appearance and response of the child. I lived with the cut-off dates and it affected my pregnancy with Moo. Reading the comments and feeling the tears well up in my eyes made me realise how deeply this did affect me even though it occurred now almost 4 years ago.

I wonder how – with my beliefs that there is a point where you have to let nature take it’s course . . . that not everyone who can be saved by medical science, should be saved . . . that some interventions without pain relief are nothing short of cruel . . and that the ultimate decision regarding resuscitation should be made by the parents – whether I deserve to call myself an advocate for disability issues.

Is there a place in the world for me? Do I have a right to force my views upon this world?

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