Disability voices have to be heard to change attitudes

Over the summer, select episodes of the New Zealand television series about disability, Attitude, have been screening on ABC television. At the same time, a crowd-funding project is underway to make an Australian version. Graeme, Samantha and Carly‘s reviews are already online.

The fourth episode focused on Joel Fernandes from Timor Leste, and his partner Helen Nixon. Much of the episode traces the relationship between the couple and ends with their wedding in Melbourne. [You can see the episode here.]

Fernandes works at the Disabilities Association of Timor-Leste and uses a wheelchair. He explains at the beginning of the program that access for most Timorese people with disabilities is very difficult, particularly outside of the capital Dili. He then explains how he met his now wife in Australia, when he was speaking about disability issues.

As a long term campaigner and advocate for disability issues, Fernandes worked with a team to ensure recent elections (YouTube video link) were accessible for different kinds of disability. The organisation he works for has been developing accessible toilets and clean water. He explains the cultural aspects of disability in Timor Leste and how his team is highlighting the importance of including people with disabilities in the wider community.

The couple visit a school where a young man has been able to attend for the first time with modifications to facilities through Fernandes’ advocacy, however it is Nixon that narrates the story. When Fernandes tells a similar story away from the episode, he’s clear about the importance of making sure toilets are accessible and why that’s a passion for him.

“An area of change which I am passionate about is inclusive WASH [water, sanitation and hygiene]. I am a mechanic by training and so the engineering and practical side of design I very much enjoy.  It was amazing to see the difference it made to a family or an individual to have access to their home via a ramp, or independence to use an inclusive latrine or water point. I worked with one family in Dili, who had a son who was a wheelchair user. He didn’t like staying in school, since there was no accessible bathroom there and as soon as he needed to use the toilet he would go home and then stay home for the rest of the day. We worked with the school, the teachers and the students and designed a ramp and accessible bathroom. Now he stays at school and the kids understand more about disability, and his family are so happy he can finish his education.”

For most of this episode, this pattern continues. Nixon’s voice is given priority in telling Fernandes’ story, which is problematic at best. As her father meets Fernandes’ parents, again, Nixon is the one to explain the cultural aspects of the marriage, rather than people from Timor Leste. She says that living in his house with his family will be a challenge for her and that she will have to improve its accessibility. The hardship she has by sharing a room with another aid worker, and travelling all over the world to supervise aid projects is also shown.

The complex colonialist history of Timor Leste becomes a clash of religions with the Australian again narrating how hard she found the story from her perspective. Scenes from the Dili cemetery massacre are shown, along with Nixon climbing stairs to areas that were damaged in the struggle for independence. She then reflects, while sitting on top of a rock looking out to sea, about how challenging people’s attitudes to disability will be for her.

The episode ends with their wedding ceremony with them both looking delighted and happy.

What concerns me about this episode, is not the documenting of a couple in love, but the dominance of the narrative by the white, able half of this couple. Fernandes has been a disability advocate for some time, working with the UN and local structures to improve accessibility in his community. This case study shows him working with Huy Nguyen, the founder of Enabled Development, to raise awareness of how important disability is when designing water and sanitation facilities.

Media about people with disabilities doesn’t often prioritise the voice of the person with the disability, instead they become the subject to be talked about. Disabled people fought long and hard to be able to tell their own stories. In parallel, people in developing countries have rightly fought to again, tell their own stories, and for white people from rich countries to take a big step back from being the focal point. This episode seems to have forgotten these lessons from failures of the past.

There’s a great story here about disability advocates like Fernandes using his skills and passion to improve accessibility of basic facilities, like toilets and washing facilities, but unfortunately, this episode of Attitude didn’t do that. Instead, it centred the experience of an able, white, Australian woman and good intentions don’t change that story.

I agree with Jax Jackie Brown who has criticised this series as showing such limited aspects of disabled people’s lives.

“We need to see media depictions which capture and celebrate a diversity of disabilities and promote a much deeper understanding of what it is actually like to live in a non-normative body. Such representations would actually challenge and change attitudes instead of just reinforcing stereotypes. Programs that really do achieve and promote this change in attitude would surely have made Stella Young proud.”

I find it difficult to understand why the ABC, being unable to find the small amount of funding to continue RampUp, chose to purchase this series. The long-running television program, No Limits, shows that there are skilled and experienced people here in Australia who can produce and tell our own disabled stories.

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About bluntshovels

Freelance writer, with an unhealthy interest in Senate committees.
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3 Responses to Disability voices have to be heard to change attitudes

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  2. Shawn Burns says:

    Reblogged this on Disability & Media Matters and commented:
    It’s one of the big issues I’m working on a journalism educator. Journalism students are being encouraged to capture the voice of PWD. It has, for too long, been the default position to interview the partner, the parent, and/or the carer of the person with disability. It needs to change. Journalism’s grassroots seems a good place to start.

  3. Shawn Burns says:

    Great post, El. It’s an area that needs to be addressed, and I hope we’ll get there by encouraging students journalists to capture the voice of PWD. Grassroots change.

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