Video

Transcript

[Zeph] Hi, my name is Zeph. I’m an adult diagnosed autistic and I’m a member of the steering committee for the UVM Autism Collaborative. On behalf of the UVM Autism Collaborative, I’d like to welcome you to the Introduction to Ableism. The Introduction to Ableism will help make the focus groups safe space for people who are going to be participating, so welcome. 

Today we’re going to be talking about what ableism is. We’re gonna talk about why it’s important to know about ableism. We’re going to talk about what is a disability. We’re going to talk about words that hurt, even if we don’t mean them to. We’re gonna talk about how to be supportive and we’re going to talk about how autistics identify. 

As a disclaimer, ableism is a very complex topic. This is just an introduction. For more information, you can reference the article Ableism and Violence. 

So why is it important to know about ableism? It’s often hard to see ableism because we learn it from our culture. You can help make group discussions safer by learning about ableism. 

So what is ableism? Ableism is thinking disabled people cannot do things or need to be fixed. It’s thinking disabled people are less than others. It’s treating people badly because of their disability and it’s also not respecting human rights. So what does ableism look like?

[Narrator] More than four million Australians have a disability or around 18% of the population. How does the life experience compare between people with disability and the non-disabled community?

 Meet Abby, and this is Zoe. Abby and Zoe grew up next door to each other. They live in a good neighborhood and have loving, caring parents. Abby is born with a disability and her arrival is met with feelings of grief, loss, and pity. From the beginning, everyone is focused on what is wrong with her body and what can be done to fix it. Zoe, on the other hand, is born without impairments and is welcomed with a sense of joy, excitement, and celebration. 

As they get older, they both get ready to go to school. Zoe has many options. She can go to the state school or private school. She receives an education appropriate for her age and development. She has given every opportunity to learn new things and participate in extracurricular activities. Abby can also go to mainstream school, but much of the learning and other activities are not accessible to her needs. She’s encouraged to attend special school, where her support needs are guaranteed but educational standards are lower. 

She chooses a mainstream school. Abby struggles to fit in at school. It’s hard for her to make friends because she always has to explain her disability to get past other people’s insecurities about it. People aren’t always keen to make the effort to connect and to discover who she is as a person. Zoe never has to explain herself because she is seen as the ordinary child that she is. Her friendships are all very organic, free from awkwardness. 

Right through Abby’s education, she hits barrier after barrier, which are mostly caused by low expectations from the teachers and students around her and the lack of knowledge of how to make things accessible for her. Meanwhile, Zoe does not experience any barriers because the system has already been set up to meet her needs. 

After her education, Zoe gets to choose a good job, working with people who look like her and act like her and they all climb the job ladder together. This is considered fair and equitable because it’s based on skill and merit. When it’s Abby’s turn to apply for jobs, she gets the feeling she’s missing out on opportunities because it’s easier for employers to leave her application on the unsuccessful pile. She fears that employers, just like her teachers at school have no idea about how to include her. Abby finally gains an entry level position that she’s overqualified for. She has aspirations to move into executive levels in her industry but her employer is reluctant to promote her because they assume her skills and abilities in the workplace are not up to scratch. Abby will need to work twice as hard as her colleagues to prove her worth and to assure her employer she is capable. 

Both Abby and Zoe meet their special life partner at work. Zoe settles down and has kids and a happy home. Abby knows that she could also have kids and a happy home, but the doctors like to highlight the risks and dangers and question Abby’s ability to parent successfully. All through life, Zoe only needs to announce her intentions and everyone will trust her judgment and encourage her to reach her goals. Abby’s aspirations, however, are met with patronizing concern and plenty of advice on how to adjust her goals to be more realistic. Given that all the odds are stacked against her, how does Abby find her voice and stand strong in her own very unique abilities? 

41% of people with a disability aged 15 to 64 years have completed year 12, compared with 63% of those without a disability. Almost 80% of school principals report not having enough resources to meet the needs of children with a disability. Working age people with disability, 48%, have a lower employment rate than those without a disability, 80%. Parents with disabilities are 10 times more likely to have their children removed from them than parents without those disabilities. For more information and courses on disability advocacy, please visit www.daru.org.au.

[Zeph] So what is a disability? The medical model says that a disability is something that’s wrong with the person. It needs to be cured or fixed. The social model says that the environment meets the needs of quote unquote normal people. It doesn’t meet the needs of somebody with a disability. The social model says that impairments and chronic illness often pose real problems but they are not the main problems. Disability is when there are no accommodations to meet a person’s needs.

 Words that hurt. Sometimes we say things about people who are disabled and we hurt them without actually realizing what we’re doing. Not knowing or having good intentions is not an excuse. Apologize if your words hurt someone. Words create stigma and spread wrong information. Here’s an example of some of the words that hurt. 

• You don’t look autistic. 
• We’re all on the spectrum somewhere.
•  Can I pray for you? 
• My blank is really autistic, not high functioning like you. 
• You could pass for normal. 
• You’re too outgoing to have autism. 

Alternatives to ableist language. Keeping in mind the words that we use can hurt people. There are some words that you want to use and some words that you don’t wanna use. So thumbs up for the “Use This” this and thumbs down for the “Not This.”. 

You may have heard people talk about a person with autism. We prefer to use autistic. Instead of special interests, areas of intense focus. Instead of special needs, describe the needs for specific supports. Instead of challenging, disruptive or problem behavior, use the words meltdown, stimming, shut down or describe the behavior such as self-harm or aggression. Instead of high or low functioning or severity, describe the specific strengths and needs and instead of saying at risk for ASD or autism, say that there’s an increased chance of autism. 

Autism awareness. Autism is made up of a collection of features. One of these features is a high focus on interests. Another one is sensitive senses. Communication differences. Thinking patterns and differences in expressing emotions.

•  So one of the features is a high focus on interest. Some autistics are very passionate and smart about specific topics. This is how many autistic people like to spend their time and connect with others. 
• Another feature of autism is having sensitive senses. Having sensitive senses can make it hard to do things. Too much input through the senses can be overwhelming. 
• Another feature of autism is communication differences. Autistics like direct language. We may not conform to social norms. Some autistics use Alternative Augmentative Communication. AAC can include gestures, picture boards, computers or speech devices. 
• Thinking differences. Autistic people’s brains work differently. We can be really good at understanding details and how things are connected. 
• Emotional health, autistic people can express emotions differently. Autistics are happiest when they feel loved and supported and can do the things they enjoy, pretty much just like about everybody else. 

How can you be supportive to an autistic person? To start, avoid cure and treatment language. Focus on supports and needs. Use a person’s correct pronouns. Make it safe for us to be different. Be patient, take time to understand us. 

Let’s talk about pulling yourself up by your own bootstraps. There was a great article in the Huffington Post. So what this article talks about is that term pulling yourself up by your own bootstraps is really talking about trying to do the impossible. It also refers to doing something ludicrous or absurd. As human beings, we all need each other. 

So let’s talk a little bit about person-first language. What is person-first language? Person-First language is a way of talking about disability that puts the person front and center. Their disability is something that they have or are with, a person with deafness or they have autism. This image is adapted from “Neurology Is Not an Accessory.”

Identity-First Language doesn’t separate us from our disabilities. Some conditions make up a core part of our identity or culture. A deaf person or an autistic person. This is identity-first language. It puts the identity first.

So how did we get to identity-first language? A long time ago, people used words to talk about people with disabilities that were considered slurs or not nice words to use for people, it dehumanized people. Person-first language has a goal of putting the person first so that we can make disabled people more human. It also helps fight disability stigma. Second, identity-first language was influenced by disability culture and the pride movement. Third, identity-first language affirms that autism is an important part of who we are. We can’t leave it at the door or set it aside, it’s always with us.

Neurology is not an accessory. This is adapted from “Neurology is Not an Accessory.” You can find this at www.identityfirstautistic.org. 

• So this would be somebody who is suffering from autism. You can see that the autism is something that is hurting them and they’re bleeding because of it. We don’t like to think of ourselves as suffering from autism. 
• This is somebody who’s on the spectrum. You can see that the person is separate from the spectrum. They’re located on the spectrum. 
• This is a person with autism. You can see that the autism is an accessory that they carry around with them. 
• This is an autistic person or an autistic. You can see that autistic is who they are. 

Autistics prefer identity-first language. Preferred language may vary, so always ask, what people like may vary. Autistics tend to like “autistic person” better. And parents tend to like “person on the spectrum” better. 

That’s it, you’re done. We’re hoping you enjoyed this Introduction to Ableism and we’re looking forward to seeing you in the focus groups where we’re looking forward to getting your opinions and keeping a safe and comfortable space for everybody who’s participating. We’ll see you soon.