Terrible Palsy

The debate over the Ashley Treatment continues, at least on the internet anyway. I have read some great posts about the issue from both sides of the fence. Emma’s, Kathryn’s, Dream Mom (part 1 and part 2), Mete’s, the Gimp Parade and Ex Utero to name a few. I agree with Dream Mom in that some people are missing one of the underlying issues (though don’t agree with her view of the Ashley Treatmen), namely the lack of services for people with severe disabilities. In fact there is a distinct lack of services for anybody with a disability.

Dream Mom opens part 1 by remembering how her and Dear Son’s trip to the movies was cut short because of a lack of change facilities for her teenage son. And she is right. The reason you haven’t seen change facilities for older children/adults is not because you haven’t been going to the right places. You don’t see them because they don’t exist. The other day at the kids supershow I was changing Moo’s nappy and commenting to myself on how he only just fitted on the change table. And he is less than 12 kilograms. Imagine trying to find somewhere to change the nappy of your 50kg son. What are you supposed to do? Put paper towels down on the floor of the disabled toilets? Yuck!

Personally, I believe that the media has a lot to answer for in all of this. It doesn’t highlight the lack of funding for disability services even though it’s a real problem. It will quite happily speak about our hospital crisis, our water crisis, our schools crisis. But the disability services funding crisis doesn’t even make the back pages. Our local paper quite happily ran with a story for a couple of weeks about the girl with Autism whose parents wanted to put her in foster care because they were not getting respite services. It focused on the lack of funding for people with mental health issues in the community. And then completely ignored all the letters to the Editor pointing out that the funding issues were not limited to only those with mental disabilities.

Then we have the little boy whose bionic ear for his cochlear was stolen by some idiots. He is a cute little boy and the local paper was quite willing to put him on the front page with a photo of him looking grumpy and signing to have his ears turned on. Enter MP Steve Ciobo, who says After hearing about the family’s loss, I made it my priority to get his hearing back. So the kid has his new bionic ear, funded by the federal government. This also made the front page of the local paper – a nice fuzzy feel good story. All well and good but where the bloody hell are you Mr Ciobo when families are desparately crying out for funding for their child’s wheelchair and other equipment? These families get half the funding they need for the wheelchair and are expected to somehow find the money or fundraise the rest (or get only half a wheel chair). They don’t make the paper, so you don’t help.

As you probably heard me rant before, I hate the miracle prem stories that the papers and magazines spit out. This is for a couple of reasons. The first being is that the story is usually written at a time where the full extent of the prem experience is not known. A two year old who is meeting milestones, may not be doing as well when s/he goes to school. Not to mention as a teenager, when those funny voices start talking to her/him. Secondly, it devalues the lives of the prems who didn’t escape unscathed. The articles usually go on about all the medical problems and what a fighter the kid is/how clever they are, blah blah blah. Then finishes the story with the statistics of how many children do not escape the experience unscathed so as to further emphasise the miracle of this child. Really, it makes the kids out to be superheroes. I remember a Mum of a 24 weeker who lived for only 6 months telling me how she hates hearing other prem mum’s use the term “fighter” or “determined” when describing their prems. She told me that her daughter was a fighter too, and just as determined. I echo her comments. Moo’s prematurity and disability makes him no less of a person and no more. He is just like everyone else.

And lastly, I hate hate hate how the media, when they get around to talking about disability issues, make it out so negatively. People with cerebral palsy suffer from the disease. Besides the fact that it isn’t disease, nobody is suffering from it. And particularly not Moo. Didn’t you read that he has a wonderful life! Positives, not negatives! I don’t call this site Terrible Palsy because I think that Cerebral Palsy is a terrible condition. I call it that because I see the irony behind the name and it is my hope that by reading this site, you will realise that things aren’t terrible at all. And plus, at least with Australian slang, terrible rhymes with cerebral.

Okay, got to go back to the housework. Rant over (at least for today).