Wednesday, November 12, 2014

Privilege, politics, feminism, human rights

Julie Bishop, a high profile Australian politician, says women need to stop whining and get on with it.... she is talking about the gender inequality in society and the workplace. Her comments I believe were made in the context of a discussion around feminism.... which, as I understand it, is an issue of human rights. So, as someone who spends a good amount of time advocating for equal rights for all humans, I'd like to know which part of my life- which of my challenges- I need to apply her "stop whinging, get on with it and prove them all wrong," advice to. 

Maybe I could stop "whinging" about the fact that schools can't/won't make accommodations necessary for my kids to attend? 

Maybe I could stop "whinging" that the federal government, of which she is foreign affairs minister, is about to sign a trade deal with China that will likely mean my family can no longer afford the medications required to keep us all well unless either my husband works full time (which puts him under so much stress he can't manage without meds) or I find employment (which would mean the kids can no longer be home schooled so they'd have to go back into the aforementioned environment that won't accommodate their needs)? 

Maybe I could stop "whinging" about having a huge debt from my University studies that I'm unlikely to ever pay off because I am a women who chose to study 2 degrees in the hope it would make me more employable, but has less earning potential than a man because I am not a man, and also values my family life and the well-being of my kids so I haven't done much paid work in the last few years in order to pay said debt?

Maybe I could stop "whinging" about the fact that people will not stop looking at my family as burdensome and stereotyping us because some of us have disabilities?

This is a textbook case of a privilege at its ugly worst, with another well off white person totally missing the point about the very real challenges many of us face. It is not as simple as stopping whinging and proving "them" wrong. 

I... we... my family and I.... have been "proving them wrong", flying in the face of both statistics and stereotypes, for two decades now and I don't see any wealthy policy makers lining up to pat us on the back or help improve our financial situation. In fact, they are doing the opposite. 

Wake up and smell the dissent Julie. The rest of us don't have the privilege to be able to see this issue as simplistically as you do. We are speaking up about it, and your words in light of that are just plain insulting.

Saturday, November 8, 2014

Assumptions make a mess of things

I am married to a man who is diagnosed with Bipolar.  We have 6 children. One of them is also Bipolar and 2 of them are Autistic. One of our Autistic kids does his schoolwork at home by Distance Education, and the other we homeschool. Two of our kids go to local schools. The youngest is not quite 2 and home all the time. Things can be quite hectic around here. 

I generally don’t broadcast our struggles publicly because…. well, they are ours, and the kids don’t need to grow up to see me whining about parenting them all over the place when they grow up. But for the purpose of this article I’m going to go ahead and say it’s a tough journey supporting a large family with so many varying support needs. I do a lot of appointments- both for myself and for the hubby and kids. I do a lot of supporting and organising accommodations for different peoples needs. I also choose a level of involvement as an activist/advocate in the online community (sometimes in “real life” situations too). Most nights I go to bed thoroughly worn out and worried for the future.

Is my life harder than yours because I have family members with disabilities? Maybe. Maybe not. How would we know? You don’t live my life and I don’t live yours, so how do we tell who has a harder time?

You might think that because of the complexities within my family things are harder for me. Or you might think that your family is more difficult than mine. You might think that because I don’t complain much publicly I have it easier and my kids are not as disabled as yours. These are all assumptions that you are making based on what you think you know about me and my family. They are based on what I choose to present to you in this format, what I am happy for you to see. Some people I meet online like what I present and some don’t. This week alone I have received both encouraging comments and angry name-calling comments. 

My good friends know me differently than those who know me only through my blog. They hear about the really hard stuff and understand my struggles. They know my kids well and are generous about accommodating their needs. They are easy to be around, tolerating me at my worst and celebrating the highs with me. 

People in my wider local community probably have a very different view of me than my good friends and than people who know me online. They see me day to day going about my business….. shopping, school drop offs and pick ups and all that. I know that some of them think I am a grumpy person who doesn’t care much for other people. I know there are people who avoid me and there are things I don't get invited to because of this. I’ve been accused of nasty things and been called unpleasant names. 

They are working on the assumption that what you see is what you get. Because I don’t air all our family struggles publicly they assume I am rude or antisocial, rather than that I might just be having a full on week. They don’t realise that sometimes I am just plain too tired to do conversation with people I barely know, and that if I were to try, the only things on my mind that I would talk about are things they don’t understand and can’t relate to. 

They also don’t realise how lonely that it can be, constantly in a state where I have to ration out my energy by choosing who I make an effort to speak to so that I have the required energy to be available to my kids through the afternoon. I don’t fail to converse with people I pass by, or turn down invitations because I hate everyone and don't want to have a social life…. I do it because I don’t have energy most of the time to be able to manage small talk with people who don't know me and don’t want to know what my life is actually like. But people assume what they assume, and so on it goes. 

Which all sounds like a big whinge! I must admit it feels uncomfortable sharing this much here, but I am doing it for a reason. We all know someone who is supporting a person with extra challenges of some sort. Autism (and other neurodivergence and disability) is around everywhere, and here to stay…. so there are plenty of other people out there who feel the way I do. They might be parents of an Autistic child. They might be an Autistic adult. They might be someone who has a disability of a different kind. So I’m putting this out there to try and let people know….. assumptions make a mess of things. 

Please, if you regularly see someone going about their business who might seem a bit strange or distant, or like they are just keeping to themselves and there is no really obvious reason ….. or maybe you know they have kids with extra support needs, or have a disability themselves…..  don’t just assume they are unsociable or not interested in friendship. 

Say hi. Offer them the chance to chat. See if you can draw them out. Ask them if they need anything. Let them know you are there. Invite them to things and tell them you understand if they cant stay for long, but you'd love to see them, and offer them the option for you to set up a quiet place for their kid (or them) to chill if they feel overwhelmed. 

There are lots of things that you can do that can make all the difference to someone like me in forming and maintaining friendships. They aren’t difficult to do, but will make all the difference to me, or someone like me. Those things might be similar for each person, but will vary some too, so if you know someone like me…. ask them what they need to make it possible for them to join you at social events. Don’t be offended if they say no thanks, despite your efforts. Sometimes I just can’t, and it’s got nothing to do with anyone else…. I just need quiet time. 

But whatever you do, don’t assume. 

Everyone lives their own lives. We have no way of knowing who might have things a bit tougher than us. Be gentle. Be generous. Be gracious. Don’t assume. 

Friday, September 12, 2014

Is it ok to kill my husband?

trigger warning: 
discussion of murder, murder of children, murder of a disabled woman, suicide, excuse of murder, sympathy for murderers 

Dear Journalists and Members of the Media,

We need to have a talk. I have some serious questions to ask you, and I'd like to know your honest answers. 

Once again this week, I'm seeing violent murder....  4 violent murders, actually- 3 children and their mother ....... reported as a tragedy and with sympathy for the murderer. He was a pillar of the community. He was a great guy. He was so patient. He was under stress. He must have snapped. He must have been suffering, after all, he committed suicide. 

His wife had a disability

Maybe that is why we are reading your sympathy for him.

So, here are my questions for you:

If I kill my husband, who has a disability, is that OK

If I kill my 3 kids, who have disabilities, will you feel sorry for me too

Now do you see how dangerous what you are doing is? 

Do you realise that while ever you continue to empathise with murderers you put lives at risk?

Will you stop? Or will you keep doing it because it sells papers and gets ratings? 

Saturday, August 23, 2014

Who are the REAL experts? ... more on privilege

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? 

Friday, August 15, 2014

Things I don't need to worry about: Let's talk about privilege

privilege |ˈprɪvɪlɪdʒ|nouna special right, advantage, or immunity granted or available only to aparticular person or group: education is a right, not a privilege | [ mass noun ] :he has been accustomed all his life to wealth and privilege.• something regarded as a special honour: I had the privilege of giving the Sir George Brown memorial lecture.• (also absolute privilege)(especially in a parliamentary context) the right to say or write something without the risk of incurring punishment or legal action for defamation. he called on MPs not to abuse their privilege. [ mass noun ]a breach of parliamentary privilege.• the right of a lawyer or official to refuse to divulge confidential information.• chiefly historical a grant to an individual, corporation, or place of special rights or immunities, especially in the form of a franchise or monopoly.verb [ with obj. ] formalgrant a privilege or privileges to: English inheritance law privileged the eldest son.• exempt (someone) from a liability or obligation to which others are subject:barristers are privileged fromarrest going to, coming from, and abiding in court.

Have you heard the phrase "check your privilege"? People use it when they want someone to think about their attitudes in terms of what they assume due to their circumstances that others can't assume because of theirs. 
Let's check my privilege.
I am fairly neurotypical. This means I do not have a diagnosis of Autism or Bipolar or Depression (currently) or any number of other things considered to be a divergence from expected neurology. This means that, unlike my husband, if I get angry about something and want to speak out about it people do not respond to me by saying "forget your meds today, did you?". It also means people do not question my ability to parent my own children based on the assumption that neurodivergence makes a person less competent to be an adult. 
I am white. This means that, for the most part, I do not have to worry when I step out that someone will make a racial slur at me based on my appearance. It means, in this country, I am not likely to be assumed to be in the wrong because of my skin colour. It means I do not have to worry my children will be targeted because of their skin colour. 
I am well educated. This means I have a choice about what kind of jobs I can do and where I work. It means it is easier for me to do more study if I want to in order to improve my work prospects. It means I am able to support my children if they need help with their learning, and I can assist them in making wise decisions about their education. 
I am articulate. This means I can hold my own in a discussion in a meeting at my kids schools and I do not have to worry that the teachers I am talking to will assume that I am part of my childs "problem". It means I can speak my opinion confidently without have to worry people will police my grammar.
I am (reasonably) slim. This means I do not have to expect jokes to be made about my size, assumptions to be made about how lazy I am, and doctors to tell me that all my health problems are related to my weight and if I were just to eat less and exercise more everything would take care of itself. It means I can walk into any clothing shop and find clothes in my size that I like and am comfortable wearing. 
I was born in a country where good food, accommodation, health care and education are readily available, and I am of a socio-economic standing that I can access all those things freely. I am by no means wealthy by our societies standards, but I have everything I need.This means I do not have to worry where my next meal comes from, where I will sleep each night, what I will do if I become ill, and more importantly I do not need to worry about any of those things for my children. 
All the things I have just listed that I don't need to worry about are actually covered by the Universal Declaration of Human Rights. It is a sad fact that not everyone has the same privileges/rights afforded to them that I do. It is important to recognise this for a number of reasons, the most basic of these is for peoples wellbeing and safety. Another is because it should be a consideration when we speak to each other. 
We need to be aware of where we have privilege that others don't. 
For example, if I am talking to someone who struggles with anxiety I do not say, "just ignore it and it will pass" because they can't do that. I might be able to ignore my anxieties, but that doesn't mean everyone can, and I need to be careful not to shame them for their current inability to do so. 
For example, if someone is expressing frustration over not being able to find work, I do not say "just apply for every job in the paper" because that fails to acknowledge that there may be reasons they cannot just apply for a job that might be 50kms from their home and to do so is insensitive when I am not in the position of not having to worry how to pay the bills and feed my kids. 
For example, if someone complains that their rented home is freezing and mouldy, I don't say "so move to a new place" because that assumes they can afford to make a move when in fact they can't. 
Of course, there are areas in which other people have privilege where I do not. One example is that most men will never be told they should wear a face full of make up to make a good impression, or that they need to wear 'modest' clothes to avoid being raped. 
Do you see what I mean? 
We need to be aware of our privilege. We need to be respectful of other peoples situations and refrain from applying the same reasoning over other peoples lives and situations that we apply to our own. We need to show empathy and compassion for everyone. We need to listen to each others stories and value each others perspectives. 

Image is an orange rectangle under the words "Have you checked your privilege lately?"

Sunday, May 11, 2014

40 things I am thankful for on my 40th birthday

Every few years my birthday falls on Mothers Day. This year happens to be Mothers Day and my 40th birthday.  

I am taking time today to "count my blessings". 
Here is my list of 40 things I am thankful for on my 40th birthday. 
Yes, I know it looks like a list of 10 things, but- trust me- there are 40 things in there (there may be more....I kind of got muddled counting)!! 

1. I am thankful for my mother and father, without whom I would not be here! My parents made sure I had everything I needed as I grew up, and are to this day always there when I need support. I don't call on them as often as I used to, but I know they would be here in an instant should I say I needed them. 

2. I am thankful for my Wonderful Husband, without whom I would not be mother to my children. My hubby is an amazing guy.... hard working, persistent and self-sacrificing. He is my love and my best friend and I would not want to be without him. 

3. I am thankful for my children. 6 of the best things I ever did. Each an individual, each with their own strengths and challenges, each a privilege to have in my life.

4. I am thankful for my siblings. 3 people who have known me their whole lives, who still like to spend time with me occasionally! I miss the times we all lived close together, but I know we are all in the right places, living our lives well. I am thankful for their partners and children.... my extended family, and people my kids would be happy to turn to in the event I couldn't be here for them. 

5. I am grateful I had the opportunity to grow up in a culture different than my birth culture. The experiences of my high school years formed the way I view the world, and helped me to become understanding of the need for compassion toward those who are from different backgrounds than our own. 

6. I am thankful for old friends. These are people who I have known since high school that I still love to chat with. They understand things about the way I think because of experiences we shared that no one else gets. They are in the stories I tell my kids about "when I was growing up", and are in the  memories of simpler times I cherish. Because of them I have little to draw on when my teenaged kids tell me of difficult experiences I am led to believe are "typical teenage relationships". Because of them I grew up feeling valuable and understood. I will be forever grateful. 
Bel bilong mi i amamas tru long yupela wantok bilong mi.

7. I am thankful for the friends of my adulthood. These are the friends I made as a young parent. We learned some tough lessons together. We supported each other through the days that followed sleepless nights, learning how to navigate parentings tough decisions, and through unexpected diagnoses. We've done this in person when we lived near, and continue to do it over the phone now that we live further apart. Here I give a special mention to my kids godmother who countless times has leant her listening ear to allow me to process my thoughts and her gentle wisdom to support me in tough decisions, and the kids godfather who has welcomed us his into family's home and lives unreservedly.  

8. I am thankful for friends in my local community. These are the people who I see daily, the parents of my kids best friends,  the people who support me and my family and who I hope I support in some way too. They put up with my bad mood days when I have Uni work due, they are on hand to pick up my kids from school if I'm running late from an appointment, they invite me to do stuff with them when they know I likely won't be able to- just so I know I am thought of and welcome, and they check up on me if I go "missing" when I am super busy.   

9. I am thankful for online friends in the Autism community. Many of these people are Autistic, and amazing advocates for themselves and for Autistic children. Some of them are parents of Autistic children who love and accept their kids exactly as they are. I am grateful that these people speak up about things that need changing in our world, sometimes at great personal cost. I am grateful that they give of their own time to answer my questions. These people have helped me challenge the generally accepted discourse around Autism, and as a result I am changed and my parenting is changed, for the better. 

10. I am thankful for the privilege of living in a well resourced place in the world, where I have access to good food, comfortable housing, running water, electricity, warm clothes, technology, choices, education that helps me know which choices are wise, opportunities to better myself, the freedom to express my opinion without fear for my life, and for people in my life who are not afraid to speak up and help me to appreciate all of this. I am also thankful for those who are helping me learn how to use my privilege in a way that benefits others. 

Friday, April 4, 2014

Autism Awareness, Light it up blue, and other problems

I know I am overdue an end of March post, but I've been so busy and I want to catch you all up on what's happening for "Autism Awareness Month" in my neck of the woods. 

The most exciting news is that The Huffington Post republished an article I wrote on my Amazing Adventures blog. The post is called "I will not light it up blue". I'll let you go read it to find out why. You can read it on the Amazing adventures blog or on The Huffington Post website, or on the Aussie Mum Network website (because they are running a series I edited during April too, so if you go there click around a bit to see the other posts).

We've been having some fun on the Amazing Adventures Facebook page too, making and posting memes like these.....

The 5 images above are all of smiling Autistic people next to a caption that says 
"I need your ACCEPTANCE much more than I need "Autism Awareness"

 I've said it before, but April is always a good time to say it again. Running campaigns for "awareness" does little for Autistic people.  Especially when the groups running the campaigns have the motive of raising money so they can pay their own salaries run programs that have been determined by non- Autistic people as helpful for Autistic people. 

Rather than rewriting my thought on this I'm going to jump on the republishing bandwagon and share with you a post I wrote for Amazing Adventures. You can find the original here.

"World Autism Awareness Day has been held every year since 9 September 1989. It was designated by the United Nations General Assembly resolution "62/139. World Autism Awareness Day," adopted on 18 December 2007, proposed by Qatar, and supported by all member states.[1][2][3][4] The resolution had four main components:
  • the establishment of 2 April as WAAD
  • participation of UN organizations, member states, NGOs and all private & public organizations in WAAD
  • raise awareness of autism on all levels in society
  • to ask the UN Secretary-General to deliver this message to member states and all other UN organs.[3]

I suppose in 1989 a World Autism Awareness Day may have been useful in some ways. After all, at that time the diagnosis of Autism had only been available for about 40 years, and Autism was not something most people knew about. In fact, in the 1840's Donald Gray Triplett, now in his early 80's was the first person ever diagnosed Autistic. Although I can't speak on his behalf, I'm pretty sure that World Autism Awareness makes no difference to Donald in his every day life.  

I can, however, speak on the behalf of my children. And I can tell you with all certainty that World Autism Awareness Day does not stop students at my sons school calling him stupid when he has to seek clarification on work tasks because he didn't understand the way the teacher communicated. 

World Autism Awareness Day does nothing to stop students at my sons school calling him rude when he tries to assertively explain his viewpoint in his someone monotone voice. 

World Autism Awareness Day does not prevent people from staring at my daughter if she has a sensory overload triggered meltdown in a public place and making snide comments about her needing a good spanking.

World Autism Awareness Day doesn't stop a mother in my community referring to my children as c*#^s who have behaviour problems because of my parenting and insisting they can't be Autistic. 

Those kind of situations can not be helped by awareness. 

I would actually argue that awareness can in some instances can hurt my kids. Like when students at my sons school say to each other- "don't do that, it makes you look Autisitc".  I'm not going to break down for you how many ways saying something like that is wrong (mostly because, to be completely honest, I can't stand the thought that you might have been reading my blog for a while and still not know why that statement is so offensive). But I will say that hearing his neurology referred to as an insult breaks my son just a little bit more each time it happens. 

There are others who agree with me. They are Autistic adults. When I asked them if World Autism Awareness Day helps them they said:

Kassiane- "yeah it helps me by making the world more aware that I don't exist, but would if I was a 6 year old white boy. And then when it finds out I do exist it reacts in a way that's a really awful amalgamation of insisting on denying my existence and acting on every awful hyperbolic stereotype, thus resulting in me being invisible except when people are wiping their asses with me.

Oh wait that's the opposite of helping."

Lei- "Awareness does not help me. I am aware of a great many things, but that does not mean I understand or accept them. Almost everyone I've ever met is "aware" of autism. That doesn't mean they accept me, or think it's okay to be like me. It just means they recognize my existence. That just seems weird to have a day set aside to say "Yay! You exist" and nothing else. I don't think it helps anyone to be tolerated once a year. I do plan on "celebrating" that day by reframing it as Acceptance Day and using it to open the library and hopefully, to change some minds about autism, acceptance and the value of human diversity."

Accpetance on the other hand......  true acceptance of Neurodiverstiy.....  true acceptance of the idea that everyone is valuable just as they are and has something of worth to offer even if they are part of a minority group.....  that would help my kids and my friends. 

Acceptance of difference would stop students making value judgements on people needing communication clarified. 

Accpetance would make it inappropriate to make jokes and form insults based on someones perceived differences. 

Acceptance of things we see but don't always understand would mean I and my children would not be subject to criticism and hurtful comments when things get hard for us in public. 

Acceptance is the only way my kids are going to grow up and not have to face the societally induced struggles my Autistic friends have faced in their life times. 

And let's face it, no one wants to know their kids are going to grow up having to fight every day to be deemed worthy by their peers just because they process information differently and need more support than most people do. 

No one wants to know their kids are going to be the butt of jokes and snide remarks because their voice doesn't have the same range of intonation as other people. 

No one wants to know their kids are going to grow up knowing that one day a year they are celebrated but the rest of the year they are going to have to "tough it out", "suck it up" and "just do what you can not to draw attention to yourself and you'll do fine". 

No one wants that for their children. 

So World Autism Awareness Day does not help my children. Or my friends. 

I am asking you to please, please, please, help me spread the word that what Autistic people need is ACCEPTANCE not awareness.  

For my kids. Please.