Hubby took this photo when he went to the local BCF to buy some rope. This guy was parked across 4 disabled car spaces. Even Hubby couldn’t believe the audacity of this guy.
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”.
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.
I like the way our kids are changing the world.
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.
I have a new home on the web. Please visit http://wheelyfast.powweb.com/
The link to my blog is at the bottom of the homepage.
I am green, I have no training and sometimes no clue… I am making it up as I go along.
Clearly I missed the chapter on “How to Advocate for your Child” in ‘What to Expect when you’re Expecting’, was there one?…
I devour information from PwD who speak, blog, write so eloquently about their needs/wants/dreams, but I am an abloid, how do I really know what MaccyMoo needs/wants/dreams.
I assume he wants independence, free will, ordinary experiences, laughter and ice cream for dessert.
I know he thinks sleeping (at any time of day or night) is for wimps and, should I choose to do his therapy, and mess with his ‘free will’, I do so at my peril.
He is five, he is a boy and he is my son. I am significantly more than five, I am a girl and I am his Mum.
How on earth do I really know what is in his heart.
I hope my ability to regularly exist in a ‘child state’, to consider what would have been important to me if I was a five year old boy and to strive to always appreciate a good ‘fart gag’ will stand me in good stead. Will that be enough?
We establish rules at pre-school to ensure he isn’t treated as a ‘precious, ‘special’ little boy’ but merely as a five year old boy – the kids get it, their parents might in time.
But is that what he wants or what I want.
I find it hard to pinpoint what it is that I want for him. Do I want him to be ordinary… and then… what is ordinary? I consider my upbringing ‘ordinary’ but then I loved winning at sports (all of them), I liked being better at school than the person next to me, I liked that as a kid I was in the local paper regularly for my achievements. Did everyone do this, is this ordinary?
I have struggled for sometime to work out what it is I am chasing for MaccyMoo – but finally…
I think I may have found it.
Thankfully there are people out there far smarter than me. I came across an inclusive education site – important research as we prepare for MaccyMoo starting school next year and there it was… the words I had been looking for…
“THROUGH THE SAME DOOR”
This absolutely encapsulates what I am trying to achieve for MaccyMoo – to be able to access life through the same door as everyone else.
It provides a simple answer when others ask “why are you mainstreaming him”, I now have an answer I am proud to share…
As I said, I am still green when it comes to advocacy, but I hope I am getting there.
The site I found was www.throughthesamedoor.com it is Micah’s story of his inclusive college education and regular life. Thank you Micah.
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?
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.
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:
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.