I’m a Board Director!

Yes, it’s true.

I’m on the Board of Governance of AMAZE.

And I wonder if I am experiencing internalised ableism or imposter syndrome or both because part of me thinks it’s funny. Although, I take the position very seriously and it fills me with trepidation (because I now represent autistic people on the board of an autism organisation) part of me finds the appointment of ME to the position amusing.

Don’t misunderstand me, I am very knowledgeable about autism and being autistic (just check out my old blog posts and follow me on twitter and you’ll see that disability and social justice are my special interests) but I still feel like a child on the inside (that’s the internalised ableism bit).

Although, my overall skills have improved due to practice and life experience, I still have the same essence of me that feels child-like. I still daydream, I giggle at my sons jokes and unexpected observations, I like games (board games, kicking a football or shooting hoops) and watching our pet chickens roam around our backyard simply being chickens. Sometimes, I still jump off a swing or climb an obstacle with my nieces and nephews, at a park, in fact often I do. When I visit my nan, I want to lie on the floor instead of sit in the chair while she talks and on long car trips I put my feet up on the front passenger dashboard. I forget that I’m forty and that’s unexpected behaviour at forty although, more-and-more, I am aware of what’s expected but I just disregard it because I’d much rather do what I like. I think to refer to those characteristics as child-like is prejudiced. It’s not child-like, it’s being carefree and my sense of what’s comfortable and fun is different and uncomplicated. I am not a child, I am an adult who doesn’t conform to adult culture.

Then, there is the fact that I need more guidance to accomplish tasks successfully. A perfect example is how I almost always get lost (with the exception of routes I take daily because they can be completed without conscious thought). I watched the movie ‘Finding Dory’ with my children, a few days ago, after reading this piece on how the movie covered the themes of disability surprisingly well. After watching it, I realised that Dory and I, although having different disabilities, had a similar need for a lot of support with following and remembering directions. Children need more help than adults usually, so there is the risk that I could be thought of as child-like (which would be ableist) because it is not acknowledging the fact that adults require supports too. Disabled adults need more support in an environment that does not follow the guidelines of Universal Design.

After writing this (which has served as self -exploration), I realise that laughing in disbelief, over my appointment to a Board Director position, is actually very ableist and when you are ableist against yourself (internalised ableism) it automatically has flow on effects to others. I apologize for that.

So now it’s time to redefine what it means to be a Board Director and all those other titles that have long been held by primarily privileged non-disabled adults so that people like me, don’t think that positions like those, are not for people like us and that they do accommodate our needs.

 

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Disability and Australian Politics

I was shaking from the cold. Trish* told me to put my jacket on and I wondered if she was trying to get me to cover up my bright green shirt and logo and the oversized ‘Vote Greens’ badge but she was twice my age and appeared to suffer worse from the cold than I did and was probably just looking out for me. She told me that she likes to “mother” people. As I handed out flyers for the ‘Australian Greens Party’ she handed out flyers for her political party of choice and chatted to me about her family and the dramas in their campaign.

The whole situation amused me. This was the first time I had ever handed out flyers at an election and the experience was a unique one. Here I was standing next to and chatting to a seasoned ‘Liberal Party’ (a conservative party in Australia) supporter when I would never in my life vote Liberal.

Usually, I was the one dodging the people handing out flyers, avoiding eye-contact with the party volunteers and saying “No thanks” and now I strongly felt the discomfort of others approaching as their eyes darted side-to-side for the quickest and least confrontational route to the end of the queue. I was feeling equally uncomfortable as a result and not sure when to make eye contact either, if at all, but they say some people are undecided when they arrive and they are not likely to vote Green if they don’t have the flyer in their hand while making the decision. I wish they had signs on their foreheads saying ‘undecided voter’. I just tried to be as friendly as possible without exposing my weak conversational skills.

Earlier that morning, when I had been standing alone, I was approached by an anxious looking woman who told me that it was not the Government that was running the country but that it was her family that ruled the world. While she talked she kept asking if I understood. I nodded my head politely and tried to understand what she was saying but her conversation was erratic and I have auditory processing difficulties. She was talking a lot and I didn’t know if she would stop if I couldn’t find a way to end it. She mentioned something about Judaism and said that religion ruled the world. I thought about mentioning that I wasn’t religious but I wasn’t sure if that was the right approach. I said “What can I do for you?” Eventually, she mentioned how literacy has changed the world for the better and how important health and education were. Bingo! She’s right. I said “I agree that health and education are very important and see here on our flyer where we make it a priority”. She smiled at me for the first time because that was the message that she was so desperate to impart. I thanked her for talking to me about it and wished her on her way.

After being stuck in some glare from the sun (I have sensory processing difficulties), I had asked to swap spots with Cath (the other Greens volunteer) and I had found a safety net in Trish who was on my left. Next to me on the right were two extreme right-wing party volunteers. I couldn’t bring myself to make eye- contact with them because of the hate and division they create in our communities. One of their right-wing signs said ‘Multi-ethnic. One culture’ and something about making ‘Australia more Australian’. I wasn’t listening to what they were saying because I didn’t want to feel sad right then but I had no plans to move. They were the first to hand out flyers to voters coming from one of the carparks and I wanted to follow that up with a Greens flyer for those people like me who get upset by the cruelty and racism of right-wing politics. It’s ok, I’m here and I don’t hate. At one point, I overheard one of the right-wing volunteers say to the other “People think our party is racist but we have people from different nationalities in it” as if the presence of people of different nationalities means that it must not be racist.

Trish had greeted an unhappy looking guy in a flannel shirt with “You don’t look very impressed to vote today” in a joking manner and he was ready to let us have it.

“Well, none of the parties are any good!” he said “I’m an environmentalist but the Greens keep contradicting themselves on that (I made an assumption that he was a hunter/ fisher kind of guy) and the Liberals are only interested in putting money in the pockets of the rich.”

He turned to the right-wing volunteers beside me and said “You are more like it! At least you are looking out for Australians!” Trish tried to settle him down by talking about democracy generally but I strategically spotted some people in the distance and moved away to hand out flyers to them. When I came back Trish apologized to me and said “I’m sometimes too friendly and I didn’t mean for that to happen”. I told her it was fine. I liked her friendliness, it prevented me from having to stand alone wondering when to make eye contact with people. Next to her, she could talk and I would just hand out my flyer as if it was a second thought to passers-by, which seemed much less confronting for me and them.

At one point, Trish disappointed me. A women was pushing the wheelchair of a young man who appeared to be quadriplegic. She rejected all of our flyers. Trish said “Probably a donkey vote.” She didn’t say that about anyone else. It seemed like she made an assumption based on the disabled man. I acted as though I didn’t understand what she meant although deep down I suspected she had wanted me to laugh about it or accept the statement as likely, which would make it an ableist joke at worst and an ableist assumption at least. People who are quadriplegic can vote too.

Disability rights is one of the reasons I decided to hand out flyers for ‘The Greens’ today. I’m autistic, disabled and proud. Here’s what the Greens have to say about disability: Parties respond to **ACDA election platform

*Trish: Not her real name.

**ACDA: Australian Cross Disability Alliance

Talking to kids in the classroom about Autism

I had an awesome day today. My son Damian has been very anxious attending school recently for a number of reasons, which we are seeking appropriate help for. It occurred to me that it might help him to feel more understood by his classmates if I had a chat to them during class about Autism, diversity, difference and disability.

Initially, Damian was concerned that I would be telling the class all about him. He is very conscious (and rightly so) about people talking about his vulnerabilities. So I asked Damian if I could talk about my Autism (I am Autistic) and Autism generally and then mention him briefly at the end. He was much more keen on that idea. I let Damian read what I was going to talk about and he was very happy for the talk to go ahead. I will paste the talk below (and the kids’ answers and questions in brackets – at least the ones I can remember).

When the day of the talk finally came, Damian was as excited as I was to be talking about my favourite topic, only his reason for being excited was because I was his mum (he is only 7 years old; his classmates are 8 years old) and I was going to be talking about how being different was cool.

After the talk finished, Damian told me he loved it. He had sat wide-eyed at my feet and completely focused for the entire talk and this is a boy who was also recently diagnosed with ADHD. When I asked if he thought the other kids had liked the talk too he said that they might have been more interested in the toys and books* that I shared around.

I think the talk was well-received by both the teacher and the kids in the classroom. There was lots of interest in what I had to say and I was very interested in what they had to say too. There were some great discussions. The kids of tomorrow are going to rock this world!

Good morning everyone,

Some of you may already know me but for those of you who don’t, I am Damian’s mum. I have come to visit you today to talk to you about being different especially one type of difference called Autism. Can you say the word ‘Autism’ with me? Saying it out loud will help you remember it. Try it now. 1, 2, 3, “Autism”.

Before I start talking to you about difference, I am going to hand around some books about being different and you can flip through the pages quietly while I am talking and look at the pictures. I will leave the books in the classroom for the week, if you want to read the books but for now I just want you to look at the pictures and share the books around to others in your class.

A word some people use to mean difference is ‘diversity’. Can you say it with me? 1, 2, 3, “Diversity”. What does that word mean again? Can anyone tell me? (No-one could guess except Damian who said “Black people who aren’t treated well by white people!” I said that skin colour was one example of diversity and gave a few more examples. Some of the books I had shared around had themes of racism in them.)

Diversity, which means being different, makes the world a better place. Imagine if everyone was exactly like you, looked like you, liked the same things as you, wanted to borrow the same library books as you and brought the same things to ‘show and tell’ every week. Imagine how boring and even frustrating it would be.

In this world, there are lots of different people working and playing in different ways to make things more interesting, fun and better for all of us. We are pretty lucky that there are so many different, interesting and exciting people and things for us to do in the world.

You will notice in some of those books that some differences are differences that we can see. Some of the people in those books wear glasses like me, some have guide dogs, some use wheelchairs to get around, some people have brown skin and some people have white skin, some people are young and some people are old, some people live in different houses and some people wear different clothes.

But some differences cannot be seen. Can anyone guess what difference I might have that you cannot see? (One child guessed different blood-type, which I told him was a great guess because you can’t see blood- type. Another few children guessed other things that could be seen. Finally, I let my son answer because he already knew the answer.) That’s right, I am Autistic.

Even though I am different because I am Autistic, I am also a lot like you and I was even more like you when I was younger. I used to like playing with friends, swimming in our own swimming pool, climbing trees, riding bikes and reading books. Sometimes I was happy like on my birthday and when I played with my younger cousins and sometimes I was sad like when other kids teased me or I fell over.

In fact, everyone in this room has some things the same as each one of us and other things that are different.

But because I am Autistic, I am even more different to you in some ways. Kids and adults who are Autistic may sometimes do or say things that are a lot different to most other people their age because our brains work differently sometimes. Soon I am going to read you a book that will explain how our brains work and think differently.

Some things about Autism are really great and those things are different for each Autistic person. I like that Autism helps me to say and spell lots of really big words like ‘Autism’ and ‘Diversity’. Autism also helped me to be great at maths at school, whereas other Autistic kids found maths hard but found that Autism helped them with art or music or writing or certain sports.

People with Autism can sometimes be just as different to each other as you are from each other but there are some things we have in common and this is explained in this book ‘Inside Asperger’s Looking Out’.

‘Asperger’s’ is just another word people used to mean Autism. People don’t use the word ‘Asperger’s’ much anymore so I am just going to use the word ‘Autism’ instead of ‘Asperger’s’, wherever it is written in the book.

While I read the book to you, I’d like you to put your books upside down on your lap or on the floor and pass around these squishy toys to squeeze and stretch gently while I read. Kids and adults who are Autistic often use toys like these to help keep them calm when things are getting difficult for them because sometimes it can be hard being different. Many other people find the squishy toys relaxing too.

(I read the book but skipped a few pages because it’s very long. I asked the kids about what the ‘senses’ were before reading the pages about how our senses can be different and one very smart girl answered the question better than I could. I also paused on other pages to clarify.)

Does anyone have any questions about the book? (A couple of great questions were asked like “How do you know if you have Autism?” and “Where does Autism come from?” Of course, I answered relating it to my own experience.)

You know, I am not the only one in this room that is Autistic. Autism is something that you are born with that is passed down from your parents or grandparents or other relatives. So Damian, who is my son, is also Autistic. You might notice that sometimes he finds things easy that you don’t and sometimes he finds things harder than you. It is important for anyone who is different to be understood and treated well especially when they are finding things hard.

Our school classrooms and playgrounds can sometimes be difficult for kids who are different because they are not made in ways that suit them best. They often have too much noise for us, too many bright lights or too much movement and this can stress us out. It is called ‘disability’ when our classrooms, where we work and live and the rest of the world is not built to support our different abilities.

Can you say the word ‘disability’ with me? 1, 2, 3 “Disability”. Our buildings and the way we do things is built for most people but not all of us and we need people to make our schools and lives easier by changing things to make it easier for all of us. It’s only fair.

Can you think of ways we could change the classroom or the playground to make things better for kids with disabilities like Autism or any other disabilities that you can think of, so that it is better for all of us? (There were some great answers to this question. Some about not teasing or bullying kids who are different and some about having quiet areas that kids can go to.)

Now you can understand why some people and kids look or act differently and you can just be cool about it. It’s cool, it’s Ok to be different and we need different people in our lives and in the world and we need to remember that even though Autistic kids can be different they are also kids just like you who want to play, learn and be treated well.

(Then the classroom teacher asked the class if they found squeezing the squishy toys helpful for listening. Many of the kids did. The teacher said that he finds that if he draws patterns while listening he finds it helpful to listen and learn and he asked the children if anything helped them to learn better. A couple of kids answered.)

*These were books that I bought for my boys to read at home to increase the diversity of their bookshelves. I have reviewed many of them in previous blog posts here and here.