CTS staff and Shanti Wong with Carly Findlay. Image: five people standing in front of banners. They’re smiling.
I was the keynote speaker at the Community Transition Support (CTS) forum on Tuesday 8 May. I spoke to a group of people working in the specialist education system – teachers, council workers and disability support workers. Community Transition Support aims to ensure that young disabled people receive adequate accessible information about education and employment opportunities so they can fully participate in the community. The audience was so receptive. And i was impressed by the outcomes of using the CTS resources – so many young disabled people preparing for mainstream work.
A big thanks to Taylah and Meri from CTS who were so great to work with when preparing this speech and no the day, and to Catia Malaquias who guided me to some great materials she created.
I asked how many in the room identify as being disabled. No one put their hand up. The response to my question shocked us all. We must ensure that disabled people are trained as educators – to influence education policy and delivery, and so young disabled people can see themselves in their teachers.
Image Carly Findlay giving a speech. A woman standing side on, holding a microphone and speaking. She’s got a red face and short curly dark hair. She’s wearing a sea green top. Behind and next to her are banners with CTS logo and info on it.
I pay my respects to the people of the Kulin Nation, and recognise Aboriginal Elders past, present and future. I also acknowledge the disability activists who have and are still paving the way for equity today. Thank you to Community Transition Support for having m speak today, and to all of you for attending – the CTS initiatives are so promising, and I take heart that you’re committed to improving the lives and career paths of young disabled people.
I’m a writer speaker appearance activist, trainer and occasional model. You may have seen me on The Project or You Can’t Ask That, heard me on ABC Radio, or read my writing in the news. I also have a part time day job as Access and inclusion coordinator at Melbourne Fringe – a job that was advertised for a disabled or Deaf person. And I’m writing a memoir – Say Hello – which will be out early next year.
Firstly I identify as a proud disabled woman. I see disability as part of my identity just as my race, gender, sexuality, lack of religion and love for cheese and fashion. I can’t change it, and nor should I need to.
I believe disability creates a community and culture among those of us who are disabled, and disability contributes to society’s culture, too. I am absolutely ok with saying the words disability and disabled – they’re nothing to be ashamed about, they’re not slurs. #SayTheWord
I also believe in the social model of disability – it’s recognised by the United Nations, is human rights based, and focuses on environmental and attitudinal barriers as being disabling, rather than seeing a disabled person’s body as a deficit.
“The social model sees ‘disability’ is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others.
The social model of disability is now the internationally recognised way to view and address ‘disability’. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) marks the official paradigm shift in attitudes towards people with disability and approaches to disability concerns.
People with disability are not “objects” of charity, medical treatment and social protection but “subjects” with rights, capable of claiming those rights, able to make decisions for their own lives based on their free and informed consent and be active members of society.”
Community Transition Support has asked me to talk about my time at school and in employment. I absolutely recognise my privilege – I am a middle class woman in a relationship. My education is at post graduate level, and employment status has been mainstream, consistent and above the minimum wage since I was 17. I acknowledge that so many disabled people haven’t had the same opportunities as I have. Some people with ichthyosis, – the skin condition I have – have been put in special schools, and haven’t had access to same education as me. They are a generation before me. This has stifled employment opportunities, and created a cycle of poverty and depression.
I went to a mainstream public primary and high school. Back then I didn’t identify with having a disability, because I thought disability looked a certain way, and that it would be negative to label myself as disabled. There was only one other disabled student that I knew of in my primary school, and they were very different to me.
Of course I had my skin condition since birth and for life. It was severe, and limited some of the things I could do. But because I didn’t know anyone like me, and was encouraged to just get on with it, I didn’t get the help I needed. Kids were often awful – exclusionary and bullying, and there was very little reasonable adjustment from teachers.
What would have been great was tailored assistance – like being to work in the library when I couldn’t do sport, rather than sitting outside in the often 30 degree dry country heat and among the flies. I had a passion for reading and writing, and time in the library would have helped me thrive, rather than being miserable outside, watching others do sport. What would have been great is not being seen like a burden, and the barriers removed. What would have been great is diversity and inclusion being as big a part of the school curriculum as maths. English and sport was.
Similarly, a couple of years into a government workplace, where I worked for 15 years, I encountered the guilt that came with attending regular long hospital appointments and unepxrcted inpatient stays. Colleagues thought I was making their lives difficult by being in hospital attached to an IV drip and bandaged like a mummy. When I asked to go part tiome in 2005, I was denied, unless I had a baby – this option wasn’t then a part of the Fair Work Act when I asked. I only just found out about this option this year – as I got a Fair Work Statement on commencement of in part time work. Getting through an eight hour work day when my skin is throbbing, not to mention the possibility of encountering discrimination on my way to work, can be hard at times.
These attitudinal and physical barriers are more disabling than my skin condition – because they created a cycle of stress. I got sicker and sicker. And I had to advocate for my needs. Which meant, I had to recognise I am disabled, and that disability wasn’t a bad thing.
I came to identify as being disabled when I met others with chronic illnesses and disability. We had different impairments but the barriers we faced were very similar.
In my final year of high school, I was encouraged to apply for a casual job. My parents wanted me to work when I finished year 12, but I got a job at Kmart in the middle of the year. I wish I had have started at 14 years and 9 months. This was a different environment to school – no bullies and entirely confidence building. I worked at Kmart for almost four years, from eight to 20 hours a week.
I had a small wage that afforded me a social life while I was at university. There I learnt how to work in customer service and the responsibility of money handling, but more so, I learnt how to politely and professionally deal with curious and rude customers who asked about my skin.
A customer once called me a lobster, and I was unsure how to deal with that. With the help of management, I worked out strategies in how to respond – I could either continue to serve these type of customers or pass them on to a colleague. Most importantly I made a bounty of friends who I’m still friends with.
The man who hired and managed me at Kmart almost 20 years ago died last week. In my sadness, I reflected on how he changed my life. I wasn’t locked away working out of customers’ sight (like some expected me to). I was visible, representing Ichthyosis in a very public job, even when I didn’t realise it. I was paid award wage which gave me freedom and control. And I was truly included in mainstream employment which led to full time work. I regret not telling him this when he was alive. It was more than just a casual job on my days off uni. Thanks Andrew.
My parents were adamant that I went to university and got a full time job afterward. I did a bachelor of ecommerce, which I wasn’t very good at, and a Master of Communication which I adored but took years to complete because I juggled a full time job and my health. It was with the assistance of the Disability Liaison Unit at university that I could complete my Masters without worry – they understood my health demands.
My time in mainstream education ensured I had an opportunity in mainstream employment. It allowed me to choose a path for university and then to enter work.
It hasn’t been easy, and I haven’t always been optimistic. I’ve also encountered discrimination when applying for jobs and within the workplace. I’ve experienced bullying. There has been such low expectations of me. There have been many jobs that I’ve gone for because I met the selection criteria, only to be rejected after they’ve met me. Of course their biases were never overt, but I’ve become all too familiar with the rejection and silent discrimination. I’ve found my feet now and doing work for myself as well as an organisation that I really enjoy. While I’ve been able to speak up about discrimination and bullying when I’ve felt courageous enough – but not always listened to, I worry for the disabled people who cannot – and who aren’t listened to.
But while I have been relatively lucky to get and stay in work, young disabled people are not afforded this opportunity. Segregation and a lack of information about education means disabled Australians don’t complete their studies. And this has greater consequences.
- 36% of people with a disability aged 18-64yrs, have completed Year 12, compared with 60% of those without a disability – ABS 2011
- 25% of people with a profound or severe disability aged 15 – 64 have completed Year 12  – Price Waterhouse Coopers
- A lack of employment leads to decreased economic and social participation in the community. It leads to disabled people living in poverty. Did you know that 45 per cent of disabled Australians live on or below the powerful line? – Price Waterhouse Coopers
- In 2015, the ABS reported 53.4% of people with a disability aged 15-64 years participate in the workforce, compared with 83.2% of people without a disability.
“90% of women with intellectual disability have been sexually assaulted in their lives, and 60% before the age of 18;
“children with disability are three times more likely to experience abuse than other children
In many cases, people with disability experience violence in places where they are meant to be receiving support”
With better access to education and employment, I believe these statistics can be improved. But we must raise the expectations society has of disabled people – and I think that starts with language. I mentioned before that I call myself disabled, and am not afraid to say the word disability. But so many are, and in the school system, the term disability is softened to make disability and segregation of disabled students more palatable. Special needs is often used, but what’s so special about that?
Catia Malaquias, Mum to nine year old Julius who has Down Syndrome, and founder of
“A child with “special needs” catches the “special bus” to receive “special assistance” in a “special school” from “special education teachers” to prepare them for a “special” future living in a “special home” and working in a “special workshop”.
Does that sound “special” to you?
“In the minds of many in our society a “special needs” label is effectively a one-way ticket to a separate, segregated, low-trajectory pathway through life.”
Inclusive education is a human right. Article 24 of the UN Convention on the rights of persons with disabilities states:
“Persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live.”
Catia Malqiuas is also the founder of All Means All – the Australian Alliance for Inclusive Education also compiled some research about the impacts of segregated vs inclusive education, which can be found on the All Means All website.
Catia summarised the 2017 Alana Report on inclusive education run by Harvard University.
“The Report recognises that the growth in inclusive educational practices stems from increased recognition that students with disabilities thrive when they are, to the greatest extent possible, provided with the same educational and social opportunities as non-disabled students.”
“Furthermore, the research shows “The benefits of inclusion for students with disabilities extend beyond academic results to social connection benefits, increased post-secondary education placement and improved employment and independence outcomes.”
I want to touch on Australian Disability Enterprises – known as sheltered workshops – for a minute. Just as people are getting really savvy about the working conditions of where their clothes are made – people need to be mindful of disabled people who are not paid enough here in the developed world.
There’s so much discussion about overseas workers being exploited – but what about disabled workers here in Australia? They are stuck in a cycle of segregation, low pay and menial, often degrading work.
Australian Disability Enterprises employ intellectually disabled people – some may argue this allows social interaction and a sense of independence. But many in these disability employment enterprises are paid around $2.80 an hour to do menial work that most non disabled people would balk at doing. From packaging the headphones that you receive on the plane, to making recyclable bags, to the horror of picking worms from pig poo for fishing bait – all for far less than the legal minimum wage. And so often these organisations are celebrated for giving disabled people an opportunity, but really, it’s segregation. And I’m sure the non disabled workers and bosses are getting a decent wage. Inclusive and meaningful work for minimum wages is what’s needed.
CTS asked me what I’d like to see in an ideal world.
- I want to see inclusive education for all disabled children and young people. I want to see better resourced schools, and non disabled students to participate with disabled students.
- I want accessible and inclusive sex education – that covers safety consent and pleasurable relationships – be taught to all disabled young people.
- I want young disabled people to be told about education options and opportunities like traineeships, apprenticeships, scholarships and development programs. This information should be given in a range of accessible formats – to all students.
- I want to see better access to and within TAFE and university courses, I’ve heard some students going to university can’t even get inside the building.
- I want to see less segregation and more employment in traditional workplaces. Meaningful work, minimum wage, no more excuses.
- I want to see barriers to employment broken down. Disabled people have a right to work. If the thought of employing disabled people scares people, I urge them to start by watching Employable Me on iview, which is a good entry into showing employers that it’s not so hard employing disabled people.
- I want to see an increase in disabled people hired in organisations a paid at or above minimum wage, and not just hired for entry level programs, or behind the scenes work. And I want to see disabled employees nurtured and valued and given accessible opportunities once employed.
And I want to see the government and councils to enable disabled people to start their own small businesses through grants, development programs and encouragement to use NDIS funding to do this.
- Finally, I want to see disabled people working in areas that make decisions that impact on other disabled people – in schools, in disability organisations, in healthcare and in government and parliament. “Nothing about us without us”, as disability rights activists say.
Sometimes it just takes someone like you to recognise a disabled person’s potential and assist to remove the barriers constructed by society.
You might have heard about the late disability rights activist Annie McDonald who had Cerebral Palsy. She was unable to walk, talk or feed herself. Annie was placed in a government institution at the age of three and lived there for 11 years. She was neglected and starved, and weighed only 12 kg when she was 16. When teaching student Rosemary Crossley met her in the institution, and chose her to participate in a university assignment, she saw potential, and practiced facilitated communication. Anne thrived, and sought a court order to leave the institution and live with Rosemary. She received no formal education in the institution, but completed her HSC and then a degree in humanities 1993. Anne authored academic papers and books, and presented at conferences. People thought that Anne’s inability to speak meant low intelligence. Their low expectations of her were her biggest barrier.
“I tried to show the world that when people without speech were given the opportunity to participate in education we could succeed. I went to Deakin University and got myself a degree. That, too, was seen as an exception.
“I gave papers and wrote articles on the right to communicate. I set up a website to show that there was hope for people without speech. People thanked me for being an inspiration; however, they didn’t understand why there weren’t more like me. They continued to act as if speech was the same thing as intelligence, and to pretend that you can tell a person’s capacity by whether or not they can speak.
“Please listen to me now.”
To end, I implore you all to keep working to ensure barriers to employment, volunteering and employment are broken, and that young people have access to information about education and employment opportunities that give them choice, control and freedom. This will change lives.
Has this helped you? Will You use it in your workplace or classroom? Plssse consider buying me a drink to say thanks.