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? 

All the Victims

There are lots of people talking about the horrific event in Newtown last week. And they are saying a lot of things. Some of them are compassionate, some of them awful. All of them uninformed.

I've refrained from saying anything until now for a few reasons. Initially I was too sad to say anything. Then I was just too stunned by the media reporting that was going on- particularly the reporting around the speculation that the shooter was Autistic. Then I was just plain overwhelmed by the volume of articles flooding the 'net. Everyone struggling to understand and find a reason all at the same time, all in their own way. And then, I was just grieving and thinking.

Mostly I've been thinking about the Victims of the events at Newton.

There are the obvious ones.....
The children who lost their lives.
The teachers who lost their lives.
Their families. Their friends.
The children and teachers who survived.
Their families. Their friends.

There are the slightly less obvious ones......
The shooters mother, who lost her life at her sons hand. Some want to blame her, but she is a victim.
The extended family of the shooter who now live daily with the knowledge of the suffering others endure at the hand of their relative.

And then, the media makes more victims..... They do us all a disservice when they report as they have been. They add to the fear. They demonise whole sections of society. We see it every day when sweeping statements are made. Statements that encompass whole groups of people, stereotyping and stigmatising. We like to have someone to blame. And something to blame.

Somehow it is not enough to blame a person. We want to blame a particular type of person. We have to distance ourselves from the bad guy. He can't be anything like me, we think. Or anyone I know. If I am to feel safe there has to be something bad about them that made them do this.

So the media gives us what we want. They find something to report that will keep people watching, and ultimately earn them money. This time someone said the shooter may be on the Autistic Spectrum. The media ran with it.

We are all victims in this scenario. Our kids are victims because people begin to fear them. We are victims as their parents attempting to advocate for them. Our non-Autistic children are victims as they hear their peers make incorrect judgements about Autistic people. The general public are victims when this type of reporting happens because they believe what they hear, whether it is true or not, and the ongoing stream of misinformation fuels the fire of misunderstanding and fear.

I don't think people realise the impact this kind of reporting and the ensuing commentary from members of the public has on those of us who live with Autism (There have been facebook pages pop up in the last week vowing to rid the world of Aspergers by doing things like burning Autistic children!!). It's not just words to be read. It is attitudes, stigma and ignorance to be battled every day. Going out in public with a child who behaves in ways others find unusual is hard enough to do without the extra fear people now have of Autism due to this reporting. And it is all based on an unconfirmed speculation! It is exhausting, unfair and overwhelming. 

It is also frightening as a parent to now be in the position of wondering if some cocky and thoughtless teen is going to say something to my son at school that is based on all this idiotic talk in the media that Autism is linked to violence. My son who has been the victim of verbal and physical bullying all year at school. Imagine the hurt and confusion he would feel if he was aware of all the talk going on!

I am glad there are those who are writing to counter the horrible misinformation about Autism that is being published at the moment. Myself, I just can't tackle that one just yet. But someone needs to and I am glad there are those who are. Soon I hope my mind will unblock and I will be able to get back to thinking and writing about life again without the cloud of this awful event sitting in the front of my mind.

Back to my statement that everyone speaking up and offering their opinions on the shootings and why they happened is uninformed.... The simple fact is that we will never know the details of what happened and why. The only person who really knows took his own life. The media can speculate all they want, and so can we if that is what we choose to spend our energy on. But we will never know. We can argue and exert our opinions onto each other as much as we like. But that will not provide any answers either. All it will do is divide communities that could be supporting each other. When we allow communities to remain divided we perpetuate what the media started and remain victims.

For now my thoughts go out to those families most affected by this tragedy- those who have lost loved ones in the most awful of circumstances, who will spend the next period of their lives in deep grief, confusion and pain. I don't know how they will do it, but I hope they soon find peace and calm return to their lives.

Summary of a normal month, and what keeps me awake at night

I recently applied to Centrelink for Carer Payment. The payment is supposed to be for a person caring for someone whose support needs are significant enough to prevent the carer from being able to work elsewhere to earn money.

I have three children with high support needs at the moment, and while Hubby is working full time I am not able to work because I spend so much time organising and attending appointments for and with them, liasing with their school teachers, and being available to support them whenever they are not at home.

I filled in 3 lots of paperwork, made an appointment with the Doctor so she could fill in 3 treating doctors reports, and put all the other ridiculous amounts of supporting evidence together for Centrelink, then sent the application in. I figured that even if the care needs of one of the kids didn't make me eligible for the payment, surely having the 3 of them in the one application would. The application process even had a procedure for applying for a single payment based on care needs of more than one person. So, I crossed my fingers and waited. I got a phone call a couple of weeks later, to tell me that 2 of my children's care needs were not high enough so they would not be considered in the application. Um, what? The whole point was that it is the 3 *combined*!!

But here's the thing that angered me the most. The guy on the phone, who doesn't know me, has never met me or my kids and who used the numerical codes next to the boxes I ticked (rather than the comments I wrote all over the form) to determine that my kids don't take up enough of my time to prevent me form being able to earn an income, said to me.... "we can't count time spent on attending appointments and such because that is something all parents do for their children".

So, I started keeping a record of the appointments I have attended in the last month that have been related to providing care for the 3 kids who were included in the application:

5 psychology appointments, 6 Doctors appointments, 2 Psychiatrist appointments, 6 meetings with School staff, 8 phone calls to School staff (each at least 15 minutes in duration), a Dentist appointment (that is significant because it had to be specially booked an hour away from home in order to access adequate anaesthetic for  my daughter with Sensory Processing Disorder), 1 meeting with Preschool Director, 2 appointments with Support Worker.

Here is a summary of the appointments I have attended for my other 2 children in the last month:






Is it just me, or can anyone else see a difference here?

Mr Centrelink Clerk, I think it's possible you have NO IDEA WHAT YOU ARE TALKING ABOUT.

And, although it is not relevant to the Centrelink payment application, I also attended a further 10 appointments with my Hubby to support him in managing his Health needs. That is more than usual for him due to a back injury sustained at work 6 weeks ago, but would have been much easier to deal with if I hadn't been doing all the other things.

So, on average in the past month I have attended 2 health and support needs related appointments each week day (Monday - Friday).  I have also had to change personal plans at the drop of a hat numerous times due to needing to be home unexpectedly to be with kids who have not been able to attend school due to Autism or Bipolar related stresses and anxiety.

While it is a normal part of my life, and while I acknowledge I am not privy to the details of other peoples every move and regular appointments, something tells me that this normal I experience is quite different than other peoples normal schedules.

Most of the time I do not begrudge the time I spend on supporting my children. Sometimes I do feel tired and a bit overwhelmed. But I love them, and it is so worth the time and effort to see them progress and grow and do well.

I do, however, feel frustrated and annoyed when "the system" that is supposed to be there to help people whose "normal" is a bit more challenging turns around and says "Nope- you are not doing it tough enough to satisfy our numerical equation".

I'm not looking for sympathy here. I'm not looking for a pat on the back.

I am simply saying that I think "the system" and society fails to recognise the real needs a lot of families living with things like Autism and Bipolar actually have. These so called invisible disabilities are not acknowledged in ways that are helpful.

My Husband and kids live every day with the very real effects of the stigma of their diagnoses.... bullying, snide comments, assumptions, whispered conversations behind their backs..... and more.

I have blogged before about how it is important for people with influence to be responsible with their words and actions (click to read my Letter to 50 Cent or my response to the acquittal of a couple who had caged their Autistic children or my Open Letter to the NSW Government regarding cuts to Disability Support Funding in schools), and I will refrain from saying anything about TIME magazines headline on the changes to the DSM "Redefining Crazy" except that I think whoever chose that awful discriminatory title ought to be fired.

I really should stop spending my energy being cranky about things like Mr Centrelink Clerk. There is not much I can actually do to change the way the cogs grind in those Government Departments. But it is hard not to feel angry when you live daily pushing back against the societal attitudes that have created the cogs and have set them grinding.

And although it is relatively easy to talk and write about the tangible things that happen and label them as wrong, those are not the things that keep me awake at night.

How do I teach my kids to be decent human beings when every day others take advantage of the fact they are different?
How do I help them to grow up with a strong sense of self and worth when every day others cut them down and fail to acknowledge their value just because they don't fit the mould?
How do I adequately support my kids to learn sufficient coping skills to deal with attitudes that are so deeply entrenched in our society that most people don't even realise they engage in behaviours that make life so difficult for the minority?
How do I help them learn to navigate a world where the acknowledgement of their unique needs and potential is manhandled through formulas and policy documents by those with the power to help them rather than being thoughtfully and carefully considered?
What is the "right" thing to do when my son asks me if he can stay home for the rest of the year instead of having to go back to school and be around people who disrespect him and stress him out?

This is our normal.