Today is International Day of People with Disability. (I'm pictured with the amazing Quippings crew - a disability performance group.)
The theme of this year's Disability Day is 'Sustainable development: the promise of technology'.
About a month ago I was recognised as a finalist in the Yooralla Media Awards for this piece. Last week I declined my award. I couldn't accept it knowing what happened to people in the organisation's care and workplace. As a writer with a disability, and knowing one of the victims, this just wouldn't be right. The safety and dignity of those in care is where my values lie. (And I also recognise the majority of ethical, dedicated employees and good work of this organisation and others facing similar allegations. Furthermore, I am still proud to be recognised by these independent judges.)
However, I maintain disability media and the recognition of such media through awards is so important. Whether it be disabled media makers, or media about disability, stories need to be told. This latest case highlights just important it is. I hope that Australia can run independent disability media awards through The Media and Arts Alliance or the Walkley Awards in the future.
I am scared for the future of disability media. There's very little mainstream media about disability, and what is shown is often inspiration porn. It's focussed on overcoming obstacles and even glamourising illness in Hollywood (see this article about The Fault in Our Stars - a book and movie which I loved).
The piece I won the award for was written for ABC Ramp Up. It saddens me that ABC Ramp Up has been defunded. It was a place for necessary, intelligent commentary about disability to take place. And its readership was not limited to the disability community. It was an integral part of Australian media, giving people with disability an amplified voice - and a small income.
On a cold June day I went to protest about the cessation of Ramp Up. Hey oh oh no Ramp Up should not go, we chanted. Dr George Taleporas, instrumental in coordinating this protest, was marched outside of the ABC studios by Victoria Police. Our efforts were seen across mainstream media that night, but Ramp Up was gone.
A group of my friends and colleagues started a crowd funding campaign to get a similar website off the ground. Despite the hard work promoting this campaign, the funds were not raised. While we've raised awareness of the importance of a disability voice, it still reeks of the idea that PWDs are not important enough to be funded.
It concerns me that the disability focused and produced community TV show No Limits has an uncertain future too. With Australian community TV being taken off the air next year, No Limits will not have a place on our screens, after 11 years on air. My friend and No Limits office manager Nicole Smith told the The Weekly Review: "It is so important for people to see that their work is actually getting an audience,". Hear hear. I do hope that No Limits can air online or even make it to mainstream TV next year. I loved being a part of the show.
We need people with disabilities in the media advocating about disability issues. But we need more than that. We need incidental casting. I want to see more people with disabilities reading the news, writing about diverse issues, on covers of magazines and cast in stage and screen roles where their disability is only a small part of their character. We need a diversity quota in the media.
I am hopeful about disability media though. Ordinary people have the chance to tell their stories. Self publishing is so easy. And I've listed a range of bloggers specialising in disability, chronic illness and mental illness so you can see just how diverse the blogosphere is. Very fitting for this year's theme for International Day of People with Disability.
I urge you - especially if you have a disability - keep telling your stories. It's never been so easy to self publish. Start a blog. Make a video. Speak on a podcast. Pitch to mainstream media. Good luck.
And here's my super list of blogs focussing on disability, chronic illness and mental health. Thanks to people who submitted their links in the Facebook groups and on my social media channels.
Among the Regulars - Andy Jackson writes about having a body shaped like a question mark and Marfan Syndrome.
Anna Spargo Ryan - Anna is a beautiful writer. She sometimes writes about mental illness.
Bruises You Can Touch - Carly-Jay writes about cystic fibrosis and having a lung transplant.
Chronically whimsical tales - this is a blog about Complex Regional Pain Syndrome (CRPS) and Fibromyalgia.
Confessions of a 20 Something Chocoholic - Sonja Louise writes about anxiety and depression.
CurlyPops - Camille doesn't blog so much anymore but she does a lot of work to raise awareness and funds for organ donation and the Heart and Lung Transplant Trust of Victoria.
Faith Hope Help Happiness - this blog is about gastroparesis.
Fuckability - Jax writes about disability and sexuality.
Get off my chest - Jade's blog is about anxiety.
Have Wheelchair Will Travel - a blog about travelling with a disability.
My Missing Factor - Jenna writes abouta blood disorder - Type 1 Von Willebrand Disorder.
Letters from Aspergia Jodie writes about Asperger's syndrome.
Kate Swaffer - Kate writes about dementia.
Kisses from the Fight Jess writes about Marfan Syndrome.
Lenkaland - Lenkaland says she "talks about chronic illness and how it affects my life and our family. Being mom with a degenerative nerve condition that no on can predict, manage, or cure, can be quite an adventure. I also want to show that our lives are a lot more than disability focused. We travel and explore. Photograph and create fairy dolls. We dream."
Life at My Level - Leisa blogs about achondroplasia.
Lipshitsandmentalfits - the blogger says "this is a blog about taking my life back from Bipolar disorder and psychosis!"
Living with Bob - Michelle Roger writes about Dysautonomia.
One Girl and the Sea - Emma writes about brain injury.
Rellacafa - Hayley Caferalla writes about Complex Regional Pain Syndrome (CRPS).
Sarah K Reece - Sarah blogs about Dissociative Identity Disorder.
Sleepless Nights - Veronica writes about Ehlers-Danlos Syndrome.
Stream of Caitliness - Caitlin blogs about having one arm.
The Chronic Caper - This blogger writes about endometriosis.
The Chronic Ills of Rach - Rachel blogs about
Todd Winther - Todd writes about cerebral palsy.
Tully Zygier - Tully's blog is about life with dysautonomia.
Parenting
About A Bugg - Renee writes about parenting a child on the autism spectrum.
Enjoying the Small Things - Kelle Hampton blogs about her daughter Nella, who has Down Syndrome.
Floyd Henry Morley - A blog about parenting a child with achondroplasia
Five Degrees of Chaos - Emma writes about parenting a chronically ill child.
My Three Ring Circus - Tiffany writes about parenting a child with an immune deficiency condition.
Detour Ahead - Julia writes about parenting a child with autism and ADHD
Phoebe Holmes - Phoebe blogs about her daughter who she says "her disability is a laundry list of things (hypotonia, epilepsy, motor planning issues, extreme cuteness, cognitive disability) - we've never gotten a label, so I've decided to call it Sherlock Syndrome - because it's a mystery!" (And I love the Sherlock Holmes reference!)
This Little Miggy Stayed Home - Miggy writes about parenting a child with a visible difference, and sharing stories of other little ones with disabilities.
What do you do, Dear? - Mary Evelyn writes about parenting a little boy with spina bifida.
Ichthyosis
Disability activism
Blunt Shovels - El says everything about disability policy that I can't say.
Graeme Innes - former Disability Discrimination Commissioner Graeme Innes writes about his own experiences as well as advocates for the community.
Kerrie Duff Consulting - Kerrie blogs about disability activism and life with spina bifida.
Sam Connor - a blog about disability policy and discrimination
Support groups
Chronic Babe - Jenni runs an online support group for chronically ill women
Chronically Awesome Bloggers - a Facebook group for bloggers with chronic illnesses.
Diabetes Counselling Online - Helen runs an amazing community for diabetics.
Disability Busters - Sarah created a website where people can watch great films about disability - great especially for people who are new to the sector and need new ways to view disability.
Wego Health - an online community supporting people with disabilities, chronic and mental illnesses.
If that's not enough, I've also created a linky for you to share your blogs and specific posts about disability, chronic illness and mental health. Please share your links!
Don't DIS my ABILITY blog http://www.dontdismyability.com.au/blog
ReplyDeleteThank you Carly for bringing these issues to my attention. I hope to visit as many of the blogs you have listed.
ReplyDeleteSo glad to see some great blogs on here, including Stream of Caitlinness, run by a great friend of mine. This is such an important post, and as a fellow advocate and blogger, I fully agree we must continue to share our stories!
ReplyDeleteThanks for this blog Carly.. Yours and the blogs listed have inspired me . Excellent reading xoxoxo
ReplyDeleteThanks Carly - you do such great work! One of these days, my blog will be up and running...
ReplyDeleteThanks for sharing these Carly.
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