Thursday, March 26, 2015

thoughts on selling my kids deficits to get them support

If there is one thing bound to make me feel foul it is a visit to the doctor for getting paper work done for Centrelink payment applications (for those not in Australia, Centrelink is the government department that administers welfare payments, most disability support payments require a doctor assessment).

In our family's case at this point in time, it is a necessary thing that we apply for financial support from Centrelink. My Wonderful Hubby works full time, but I am needed at home to support two kids educating at home and to be available around the clock as a support/carer for those in the family that that need it. We are incredibly grateful for the financial support we receive. Without it life would be so much more difficult. 


I do my best on a daily basis to build my kids up and encourage them. I try to instil in them a sense of self worth and pride in who they are. I advocate strongly that they be seen as valuable just as they are, event though they need some more help than other kids their age. 

When I have to fill in the paperwork to apply for financial support so I can continue to be a stay home mum, I am faced with page after page of needing to sell my amazing children's deficits. 

I have to tick the boxes that expose all the areas in which they struggle the most, make them sound like burdens, tell the part of their story that is negative without any indication that they are a real person with real feelings and real value. 

I have to do this with my kids sitting there, because the system requires that the doctor fill in their forms for the application after seeing my kids. So they get to hear me do this story telling. 

My older kids have to contribute to the story telling. It's a kind of enforced self shaming that they are supposed to just accept as a regular part of life if they want help. 

I know it is a means to an end. I know this is what I have to do to get them the support they need. 

But it makes me feel like a rotten traitor every single time I have to do it. 

And I can't help feeling it is not necessary. We don't force non disabled people to have regular sessions in which they are expected and required to confess all their struggles and failings to a gate keeper of all assistance. 

I'm so tired of it. 

But we are about to embark on a new round of appointments and assessments for my nearly 16 year old, because now that he is about to be no longer a child (??????) apparently he magically should need less help. Except he doesn't. In fact, in his case he has needed more help the older he gets. 

So, we get to go and prove that to clerks who have the power to decide if he can have help. We get to tick boxes with number codes next to them that are supposed to give a realistic idea of what life is like for him every day. 

Never mind that the forms are geared toward people with physical, intellectual and psychiatrist disabilities- none of which Autism actually is. 

Never mind that the things that actually disable him aren't really caused by Autism at all, but rather by societies unwillingness to make small accommodations for anyone who doesn't meet the unspoken and constantly changing set of arbitrary rules defining what is acceptable. 

And so goes my rant. I could continue. I won't. I need to pull my thoughts together and get back to focussing on what actually helps us. 

But I will say this. I wish with all my being that I didn't have to sell my kids deficits to get them the help they need. 

Wednesday, March 11, 2015

the problem with "There's a little bit of Autism in everyone"

"There's a little bit of Autism in everyone" ?

The problem with that statement is that it completely disregards and minimises the lived experience of Autistic people.

I'll try to explain.

I think the comment comes from another problematic statement: "Autism is a spectrum" which, from what I can tell, most people seem to think means some people are only a little bit Autistic and others are a lot Autistic. Not true. Autistic people are all Autistic and may have some challenges in common and some that differ than others. (Like all people, yes? I mean, not all women live the same lives....)

I guess assuming that some people are only a little bit Autistic lets us feel we can relate to Autism in some ways. But is that our place?

Lets take sensory overload as an example. Sensory overload is not something that only Autistic people experience. I am not Autistic. I do experience sensory overload sometimes. My daughter is Bipolar, not Autistic, and she experiences sensory overload sometimes too. Which means, in some small way, we can relate to an Autistic person. I don't see that as a problem. It's OK to say to an Autistic person that you can understand a little about what it is like to experience sensory overload, if you do.

But that does not mean you know what it is like to be Autistic and it does not mean you have a little bit of Autism in you.

Here's another way to look at it. My daughter is Bipolar, and experiences depression sometimes. I experience depression sometimes. I can relate to some aspects of my daughters experience. But I do not know what it is like to be Bipolar, nor am I "a little bit Bipolar". I just know what it is like for me when I am depressed. Some of that may be similar to what she experiences, some of it is not. If I claim my experience with depression means I know what it is like for her to be Bipolar, I am dismissing her lived experience and making light of her challenges.

Same thing.

If someone says they think everyone is a bit Autistic they are dismissing the lived experience of Autistic people and making light of the very real challenges they face living in a world that by and large does not accept them as valuable and is not set up to support their needs.