This weekend’s Good Weekend featured the story “Parenting an intellectually disabled child: life forever on duty” about Alex Browne a 22-year-old man with an intellectual disability. It showed that not much has changed when it comes to improving media representation of people with disabilities in this country. But listen up journos, it’s not okay to degrade people with disabilities and represent us as burdens, just because you think it makes a good story.
In this feature, we are told that being a parent of Alex is like “having a toddler, but forever” and that “she is bound for life to her son and his disorder”. I don’t dispute these facts and I acknowledge the hardship of parents who are too often under supported in their role, I take issue with the reporter’s representation.
The eternal child narrative permeates the entire story, and just in case you didn’t get it, the author makes half a dozen references to these including tantrums in the car, toilet training fails and constantly carrying colouring pencils. Holes in the walls created by Alex are described to shock the reader and while they build sympathy towards the parent and fear towards Alex. No effort is made to balance the story from Alex’s perspective. While it is difficult to extract this, we can draw on the experiences of other people with severe autism who, with the right supports in place, have been able to communicate. For example this from Temple Grandin, reflecting on her experiences as a child:
“My mother and teachers wondered why I screamed. Screaming was the only way I could communicate. Often I would logically think to myself, ‘I am going to scream now because I want to tell somebody I don’t want to do something”.
It would have been helpful if the author pointed out that people who do not have verbal communication punch walls because they are not provided with alternative ways to communicate or the necessary behaviour supports to deal with frustration. However that may have required the author to mention that major social reform that is currently taking place, you know, the National Disability Insurance Scheme (NDIS)?
There is no mention of the NDIS in the entire story despite the fact that Alex’s support needs are a perfect example of why disability advocates, including parents, campaigned hard for such a scheme and why the scheme has managed to secure bipartisan support and is now being rolled out across the country. Reference to the NDIS would have moved the focus from Alex as the problem to an examination of the social factors, something that the author was clearly trying to avoid.
The authors disdain towards Alex is exemplified in her deliberately unflattering and detailed description of his physical appearance. She points out his “oversized head”, and if that isn’t enough of an insult let’s mention that when he was born “he looked a bit like Yoda”.
Sorry but that’s not okay, it’s offensive and disrespectful. Personally, I know that my teeth make me look like Peter Rabbit but it’s a characteristic resulting from my physical impairment and pointing it out in that way is pure mockery and improper journalism that people with disabilities should not have to contend with. The author’s reference to Yoda is in the same vein as Eddie McGuire’s atrocious reference to the ape. This may be hard to see because we are far more in tune to racism than we are to ableism (social prejudice towards people with disabilities). After all, most people have never heard the word ableism and my voice activated software didn’t know how to spell it.
Forgive me if I’m sensitive to media representation and how the lives of people with disabilities are being devalued right now. I’m still coming to terms with the recent stabbing spree in Japan where 19 disabled people were killed and 26 were injured. The killer told police: “It is better that disabled people disappear.” The story barely got a mention in the Australian press and there was no outrage in the media towards the hate crime that it was. I am also more than just a little discouraged by the social media pile on last week against the member of the Q and A audience who dared to question Peter Singer’s views on killing infants with disability because they have “zero quality of life”.
People’s judgements about the quality of our lives impact on social policy and the Singer debate is a perfect example of how this impacts on the most basic of human rights, including the right to life. Those same judgements about the quality of our lives are influenced by the media, it’s all interrelated.
The media has a powerful influence on how Australian’s understand disability and journalists have a responsibility to represent us in a more respectful and positive light than what is current practice. It doesn’t mean that we can’t talk about the hard stuff. We need stories about the many difficulties and barriers that people with disabilities and our families face if we want to see social change. However, the dignity and voice of the person with disability needs to move from the margins to the centre of the story. The spotlight should be on the barriers that are placed before us and not on the size of our heads.