different kinds of normal : Autism

Earlier this week I wrote about privilege. We all have some. Some of us have more than others.

This week I had opportunity to try to use my privilege in an effort to help some friends of mine. I'll explain what happened.

I sometimes write articles that get published by The Huffington Post.

Twice recently Autistic friends of mine have submitted to them, and not been published. Because I thought the words they had to offer were valuable I have done a bit of an experiment with HuffPo and submitted my own articles, that carried essentially the same message as my friends article did- including direct quotes from these friends, with links back to their blogs where the posts are published- and my articles have been published by HuffPo.

So- here is my question to The Huffington Post:

Why will you publish the message of acceptance of Autism, and the message of the need for advocacy to support Autistics, when it comes from a non-Autistic person..... but not when it comes from an Autistic person?

Sadly, I think I know the answer. It's because as a non-Autistic parent to Autistic children I am afforded privilege that Autistic parents are not.

You see, Autistic people are very much caught in a catch 22. Society has been told, and believes, that all Autistic people are generally less capable than non-Autistic people. This means that if they say something about parenting it is not as valuable or significant as if a non-Autistic persons words.... even when they are talking about raising an Autistic child. Then, on the odd occasion that an Autistic parent says something and people think it's great, somehow the Autistic person is now seen as less Autistic.... or sometimes even confronted and accused of lying about begin Autistic (yes- this happens).... and their view point is again put back in the position of less valuable.

Let's really have a think about the wisdom of listening to non-Autisitc people as our primary source of information about Autism.

Above is an image that contains the title “Ask the REAL experts:” and has 4 pictures of female presenting faces(the one on the top left wearing a cute pink hat with ears), each with a speech bubble next to it.

The first speech bubble says, “Would you get a tattoo from me? I mean, I know a lot about tattoos because I am married to a tattooist, and I even have a lot of tattoos. So, it makes perfect sense that you'd come to me to get a tattoo, even though I am neither licensed or experienced, right?”

The second speech bubble says, “One of my besties has a pilot's license, so folks are going to let me fly them around in an airplane. Right?”.

The third speech bubble says, “My husband is a nurse, so I can totally put in a catheter for you and administer your IV medications. OK?”.

The last speech bubble says, “My boyfriend boxed in college, so if you need anybody punched out, I can tell you all about how to do it.”

Below the faces and speech bubbles to the left is the large word “No?” Followed by “Well, consider this: That’s pretty much what you're doing when you go to non-Autistic people to learn about Autism. And no, it won't be on your skin permanently, endanger your life or get you put in jail. But when you get the wrong messages and information and pass them on to your kids, you can most certainly damage them permanently.”

My thanks to Lei, Sparrow and Kassiane for their permission to use this image with their words and pictures.

So, what do you think? Should HuffPo be favouring my voice on the topic of parenting Autistic children over the voices of Autistic people who have asked to have their work published by them? I don't.

To be honest, I feel really conflicted by the fact that this happens. On one hand, I am glad they are happy to publish what I say when I do my best to let people know how much listening to Autistic people has helped me. On the other hand, it feels very, very wrong that the message that Autistic people have something to offer is only acceptable when it is filtered through a non-Autistic person. I am allowed, as a non-Autistic person to say "hey! I have something to offer here!".... why aren't they?

After all, who are the real experts?

Saturday, February 15, 2014

Stigma and Mental Illness

This article carries a Trigger Warning for discussion of stigmatisation of disabled people, violence toward and murder of children and disabled people, and use of pathologising language.

This past week in Australia an 11 year old boy was violently killed by his father. The story made the news on every tv channel, I think.

I am not going to go into details or try to examine the particulars of the case. Aside from the fact it would be incredibly disrespectful to the boys mother and extended family, it is simply not my place to speculate about what happened or the events that led up to Lukes tragic death.

Click to go to Neurocomopolitanism

The reason I mention the story is because it is the most recent in a long list of tragedies the media jump on and blame on "mental illness"*. In fact, today if you google "mental illness killed" the situation I refer to will show up as 3 of the top 6 hits.

This really bothers me.

I am not going to argue about whether this man had a mental illness. How would I know?

I am not going to argue that mental illness had no part in the story, either. I have no first hand knowledge of the situation.

The only thing I am going to argue in relation to this case is that I do not believe the media needs to, or should, assign blame to mental illness when they report horrific stories like this. Why?

Are you familiar with the term stigma?

stigma

noun

shame, disgrace, dishonour; stain, taint, blot, blot on one's escutcheon, blemish, brand, mark, slur

How about stigmatise?

stigmatise

verb

CONDEMN, denounce; brand, label, mark out; disparage, vilify, pillory, pour scorn on, cast a slur on, defame, discredit.

There are lots of things that people can be stigmatised for. Some stigma is quite subtle, falling into the "label" category, some more obvious and in the "denounce" category and some really noticeable and easy to see as vilification.

Let's look at an example. Here's a theoretical conversation with someone who is just meeting my Wonderful Hubby. Note that it is only theoretical because this exact combination of phrases has never happened all in one conversation before.... this is, however, a collection of real conversations all put together, so less theoretical than it could be, I suppose. Here we go.

Mr Jones (sorry all you Jones' out there, but I had to choose something): Hi, I'm James.

Wonderful Hubby: Hi I'm D. This is my wife Michelle.

(so far so good..... white, middle class appearing, male presenting person with male sounding name married to white female presenting person with female sounding name...... )

MrJ: (jumping right into it with a safe topic) Do you guys have any kids?

WH: Yes. We have 6.

MrJ: Wow!! You do know what causes that, right? Don't you have a tv? Good Catholics, hey? You guys must be crazy! Hats off to you guys- you must be run ragged! (yes, we've had all these said to us, and more) Well, at least you get a break at work I guess..... what do you do?

WH: I'm a nurse.

MrJ: Oh. So you're a male nurse? I guess that would be interesting. And shift work would keep you busy...

WH: I work part time, so it's not overwhelming.

MrJ: Only part time, eh? Lucky you. Man of leisure half the week then?

WH: I guess. I spend the rest of the week helping at home... cooking, looking after the baby, getting the kids off to school while Michelle works.

MrJ: So, a house husband! ....

You get the idea. And we haven't even broached the topic of Bipolar yet!!

This might seem like no big deal. The guys intention wasn't to be offensive. He was just surprised, right? But ask yourself why he was surprised. It's because my Hubby, even though he looks pretty mainstream by visual appearance, is in a number of minority groups. And people generally don't like or understand people in groups they aren't in. So, while the examples I've given above are mostly stigma that falls in the labels category, they are examples that are evidence of a widespread and systemic stigmatisation that is in action in our society.

Let's move on to an example that is closer to the vilification end of the stigmatisation scale. Here's what someone said to my Hubby, a few years back, when he told them he had recently been diagnosed Bipolar:

"oh, your poor wife"

And this is what I'm talking about when I say the media has no place citing mental illness as a reason for violent behaviour and crime.

The reason people feel sorry for *me* when they find out my husband is Bipolar is that they don't know anything about Bipolar other than it is a "mental illness" that causes people to be violent. They know this because the media tells them and they don't realise that there are non-violent people with mental illness all around them who just don't tell anyone about their diagnosis because they want to avoid being stigmatised.

Really. There are people all around you who have mental illnesses. They are doctors and nurses, teachers, ambulance officers, cleaners, professors, journalists, pilots, executives, actors, sportspeople ..... good parents...... all living with mental illnesses. Some of them go to therapy often in order to keep functioning in a way that is perceived as normal. Others take medications (which, by the way have some awful side effects- but that is a separate article to be dealt with at another time) to achieve that.

Let's look at some statistics. There have been numerous studies done over the years looking at the correlation between mental illness and violence.

In a 1999 article by Taylor and Gunn, in the British Journal of Psychiatry it was found that

{ you can read the whole article here if you are interested

My summary- as time goes on people with mental illness have contributed less to the overall number of homicides.

The article "Violence and Mental Illness" { read here } says,
"People who have mental illnesses very rarely make the news. The overwhelming majority even those with severe disorders such as schizophrenia, bipolar disorder, panic disorder, depression, and obsessive compulsive disorder want only to live in dignity, free from the suffering brought by their illnesses. ........
"Recent research has shown, that the vast majority of people who are violent do not suffer from mental illnesses. "
...... and then goes on to talk about the fact that there are many situations and circumstances that effect and induce violent behaviour.

So, why do news outlets lead with the line "Father with mental illness kills son"? Why are people with mental illness over represented in the stories we hear on the news?
Well, basically, they do it because it sells.
People want to hear that story. It gets ratings. They do it because the public wants to hear it. And for that we should all be ashamed. We are encouraging the media to help perpetuate the stigma against people with mental illness.

There is another issue involved here too. If we vilify adults who have mental illness (which includes mood disorders, anxiety disorders, personality disorders and other diagnoses like communication disorders, pervasive developmental disorders - Autism is in this category, and tic disorders) it becomes easy to associate the disorders with negative implications, even in children. If adults with a certain diagnosis are violent, then children with the same diagnosis will be violent too. If adults with a certain diagnosis are prone to explosive outbursts then children with the same diagnosis will be too. If adults with a certain diagnosis are difficult to live with then children with the same diagnosis will be as well.

And so society moves down the slippery slope of assumption until it reaches the point where vilifying children based on a diagnosis is acceptable.

This is where things get really horrifying. We see parents with disabled children who are finding it hard to cope and consequently harming their children, attempting to take their children's lives .... and succeeding ..... and our media reports like this: "He's going to be missed. He was a very good guy. He was always fun to get in a conversation. He was up on everything. He was well liked." about the murderer, who killed himself after killing his son. And like this:"The nature of Mickey Liposchok's disability wasn't entirely clear, but Chief Myers said he was born with the condition. Several people who knew the family said he was unable to care for himself." about the victim. Yes, in the entire full page article, that is all that was said about the victim. {I am reluctant to give the source of these quotes more traffic, but feel I need to in order to give proper credit, so if you want to look it is here } In this instance the victim was a 52 year old man.

Unfortunately the victims of these crimes are not only disabled adults. In the past year there have been numerous instances of parents harming and killing their young children as well. The common theme in all the news reports of these awful crimes is one of understanding for the criminal because they had it so hard caring for a disabled child. We are told the child was aggressive, the child required full time supervision, the child was non-verbal, the parent wasn't getting enough support..... the list goes on.... but always justifies the perpetrators actions by saying how hard their life was.

And the general public accepts this story without batting an eyelid because they have already been primed to believe that disability is bad.

While ever we sit quietly by and listen to this discourse, we are complicit in the murders of innocent people.

While ever we sit silently and fail to question the assumption that mental illness or disability is the cause of violence we support the media in their continued assault against people like my husband and my children, who just want to do what they need to - and receive the supports they require - to live their lives as productive and happy members of society.

Are you happy to be part of the continued stigmatisation?

Sunday, December 2, 2012

Normal

Normal, according to my computers dictionary is this-

I guess the words that stand out to me are conforming, usual, typical, and expected. If you want to be picky, my family does not conform to the strict definition of normal because we are not "free from physical or mental disorders". But, I have a different viewpoint. Bear with me while I explain.

I think there are many different kinds of normal. Just like it is normal in France to speak French andnormal in Australia to speak English as those languages are usual, typical and expected in thosecountries. Just like in one house hold it is normal to eat cornflakes for breakfast and in another it isnormal to eat bacon and eggs for breakfast. Just like in my house the normal- usual, typical, expectedbehaviours include mania, depression, sensory overload meltdowns and dependence on routine andpredictability and in your house those things would be out of place. These are normal in our house because we have people diagnosed with Autism Spectrum Disorder, Sensory Processing Disorder and Bipolar Disorder in our family.
Hence the name of this blog- "different kinds of normal". One of the things that is extremely important to me as a mother to children with disabilities is to do everything in my power to reduce the stigma they face as a result of being different than most people, and to advocate for understanding and acceptance of all people.
I don't have lots of time. I certainly don't have lots of money. A lot of the time I don't even have much energy left over after doing the things I do in my parenting role. But I do have time and energy to write. It is good therapy for me, as well as being a way to communicate with the world what life is like in our family.
So, I write. And I hope that somehow my writing reaches people and tells them about our normal and helps them understand that everyone is valuable and has something to offer. I hope that my writing helps to reduce stigma and increase understanding.
I have been blogging for almost a year at "Amazing Adventures- my journey parenting Autistic children". I have just started blogging at "Being OK with Bipolar". Both of those blogs are linked to this one so you can find everything easily. To read more specifically about Autism or Bipolar just click on the links at the top of the page. Information about Sensory Processing Disorder will mostly be found in the Autism blog because in our family it is my Autistic daughter who has SPD and so the two are tied in together for us. I also write regularly for the Aussie Mum Network, and you can find my posts for them here.
This blog is a linking point for everything that is on my mind, more than anything. It serves as a central place where I can write more generally, while acknowledging the individual aspects that contribute to forming my opinions and influencing my actions. It (hopefully) will tie things together while allowing you as readers to easily pick and choose the things you are most interested in knowing about and finding them quickly. I will post general thoughts on just about any topic, and also post to let you know when new posts are added on the other blogs. That's the plan- let's see how it goes!