Fiona McIntosh, mum and optimistic change-maker
In the early 80s, in a mainstream school, my younger brother was often in time-out spaces as early as kindergarten. Throughout his childhood he was labelled as a problem child. Often excluded socially and wanting so desperately to belong, he gravitated to the wrong crowd. It wasn’t until he left school and after brushes with the law, that he was assessed as having a borderline intellectual disability and mental health issues.
My brother is so very important to me and has shaped my life. He speaks my language of fairness. He is the reason I know what inequality, unfairness and exclusion looks like. If not for him I wouldn’t of chosen my policy job at Disability ACT, my uni degree, my friends or come to know the community, academic, government and business leaders who are as passionate as I am about creating a more inclusive community. He is my drive. My purpose in life that is bigger than me.
I have thought long and hard about the systemic reasons that contribute to my brother’s experience of life, poverty and how this interacts with disability. His disabilities affects how he weighs up risk, how he judges people’s character – often seeing the dangling carrot and not the costs or consequences that sit behind. He is often ripped off by others.
I now understand my brother’s life in the context of the bigger picture. The research shows that people with intellectual disability and mental health issues are over-represented in the criminal justice system and are at relatively higher risk of homelessness. The unemployment rate for people with intellectual disability or psychological disability (regardless of severity) is high in comparison with other disability groups.
To create more inclusive future communities for our kids, we need to look in our own backyards, our homes, our workplaces, services and schools for practices, interactions and spaces that might be contributing to the bigger picture of exclusion and subsequent negative life outcomes.
This involves asking ourselves uncomfortable questions about how we might have personally contributed to exclusion of others as adults or when we were kids through our words or actions. I often ask myself how did my early teasing of my brother affect him for the rest of his life. Asking this question requires moral courage as our protective ego and external reward and punishment systems are good at blocking uncomfortable thoughts and it is easy to give up looking for solutions because the questions are too hard.
We need to find better practices, interactions and spaces so that kids with disability are not seen by their peers as the others. Being perceived as an other is fertile ground for bullying, reactions to bullying and facing the consequences (like major disruption to learning, conflict at home), negative feedback circles about your potential and low expectations which impacts negatively on the rest of life. The international research shows a strong link between parents and educators about expectations and academic achievement , for both kids with and without disability.
As a parent who cares deeply about the kind of community my daughter will grow up in and contribute to, here are my suggestions on practical things that parents can do to help all kids thrive and reach their full potential.
1. Help your kid’s school create the best possible positive learning environment for all students, with and without disability. You could let them know about Everyone, Everyday – a nationally recognised primary school disability awareness program. Independent evaluation shows it is having a positive impact in the classroom on attitudes and behaviour. Fourteen schools including Radford, Ngunnawal primary and Gowrie primary have participated in the trial.
2. Encourage your kids’ school to engage early with you if a problem is identified. Encourage creative thinking between you and the school about possible solutions in the classroom that could de-escalate problems in the early stages.
3. Talk to your kids about who they don’t like at school and why. Brainstorm ways they could better understand the other kids’ perspective and ways to include them in play. Problem behaviour escalates when kids are excluded from play and parties. Encourage kids to think for themselves and not get tied up in group think which justifies exclusion, bullying and violence. Lord of the Flies is a good discussion starter for older kids.
4. Help your kids be the best person they can be. Google parental expectations and academic achievement. Here are some great tips on fostering high expectations that apply to kids with and without disability.
5. Encourage your kids to follow their passions and build knowledge in their areas of interest. Check out the TED blog of Jane Andraka , the mum of Jack a teen innovator who created a promising method of early cancer detection.
6. Help your kids to understand how small actions and words create and maintain negative attitudes towards people with disability. The research shows attitudes about disability are formed and mediated in jokes, singing songs and games in children as young as 4. Remind your kids that words like retard are disability put downs – a cheaply won laugh can be deeply hurtful to kids with disability, their siblings and parents.
7. Lead by example and challenge yourself to be the best person you can be. This means not falling into the trap of thinking just because you mean well, you are always your best self. You might not be aware of the discriminatory attitudes you subtly pass onto your kids. Don’t park in accessible car spots because you are running late and ‘you’ll be back in a minute’. Check your own behaviour and the way you respond when you see discrimination or harassment. Rise above group think and be on the side of those kids who are being treated unfairly and can’t speak out for themselves.
8. If you want to understand the limiting power of labels, watch the excellent Ted Talk by activist Caroline Casey, Looking Beyond Limits with your kids.
9. Embrace difference. Feel ok with your awkwardness at being in the same spaces as people who are differently abled, sound different, look different or think differently. People with disability and their family members have enriched our life, and I hope you and your family are lucky enough to experience this richness in your lifetime.
10. If you don’t get disability, talk and listen to people who do. You may have grown up in a segregated school environment and never had the opportunity to get to know people with disability. Start with looking at Ted Talks and other talks by and about disability in the comfort of your home (links below).
I strongly believe if we can see people, including ourselves, beyond our limitations we will live a truly rich and diverse life. Our differences unite us.
Fiona McIntosh, mum and optimistic change-maker