31 July 2015

What do you wish for?

Purple flowers in beakers

I saw a meme posted in a Facebook group yesterday morning. It said:

"A healthy person has a million wishes. A person with a chronic illness only has one."

At risk of offending a heap of people, I don't entirely agree.

I agree that a chronically ill person wishes to be well, free of illness and pain, and perhaps wishes for a cure. They (we?) wish for employment, stability, access to healthcare and understanding from others.

But I also think that a chronically ill person has - and is entitled to - many other wishes and goals. We can be ambitious in our careers, relationships, social lives and hobbies. We are multi dimensional, and shouldn't be limited by others' assumptions.

I don't wish to be cured but sometimes I wish to be free of pain (like today). And I also wish (and work hard) to one day be published by New Yorker Magazine, to speak at another international conference, to complete my phd, to write a book, to teach at a university, and to have a happy, long life with my partner.

What do you wish for?

(There were some great responses to this meme and question when I shared my thoughts on Facebook yesterday.)


29 July 2015

Parents blogging about their children with disabilities: it is a fine line between awareness raising and shaming.

Last week I took part in a fantastic Twitter chat around the power of disability stories. The chat was a part of the National Museum of American History, as a celebration of the American Disability Act. Participants were from all corners of the globe – such rich, inclusive and diverse conversation! Questions were asked about how we’d like to see disability represented in mainstream and social media. I said I’d like to see fewer stories about people with disabilities told by others. I want to see fewer stories of disability as a burden. I also said I want to see less of parents showing their child’s disability on social media until their child can give permission.

I felt pretty brazen tweeting those statements. There is often a divide between people with disabilities and parents, and also general bloggers and parent bloggers. And often I am scared to raise the issue because I feel like parents disregard the experience of disabled adults. Many of my writerly friends with disabilities are scared too. Deep breath. I don't want to create a further divide.

I read a post about how a child's disability makes her embarrassed (but it's ok, she embarrasses him too! And don’t all children embarrass their parents at some stage? When I was 12, I said the C-word at a dinner party!).And one blogger wrote a list post about why parents of disabled children are acing motherhood (compared to ‘millennial moms’). Motherhood is not a competition. To the reader, parents are heroes, and children with disabilities are burdens or inspirations.

Blog posts about children with disabilities being burdens or inspirations, or full of detailed information about the child’s condition, make me uncomfortable. I say this as someone's (adult) child with a disability. I would be mortified if my parents publicly overshared about my condition as a child or an adult. I am glad I can make the informed educated choice to tell my story my way. To read about how a child’s disability is a burden for their parents hurts so much – especially when I read about a child with the same condition as me. Was I a burden on my parents too?

These very personal stories about children with disabilities and how parents feel about them are shared for many people to read and judge. The post might go viral. What impact will that have on a child – who often cannot give consent or understand the impact of their story being shared so widely? Most often, comments are positive and supportive, but they can be brutal.

Are the children aware of the content and reach of the blog post? How would they feel of they read it? How would their teachers and friends feel? Has the child given their parent permission to write about them? Do they want medical procedures and melt-downs shared with strangers? What if the blogger's child has more fans than real life friends - will this make them conceited and entitled? I really hope they aren’t hurt by their parents’ words. The internet is forever. Even when a site is deleted.

There are parts of my condition that are so private: how my face looks first thing in the morning, the piles of skin on my floor and in the bed, and the smell of my legs when they’re severely infected. I don't let others see this side of my condition, because I guess it's like letting people see me go to the toilet. I want my privacy (and I am so thankful for my parents respecting this as I grew up). I hope to always put the best side of me online. I defended a toddler’s right to privacy online and was lambasted by the blogger’s devoted fan. It felt like a slap in the face because my lived experience was so invalid to the blogger and her fan.

An adult with a disability may choose not to disclose their condition - the whole condition or certain intricacies of it. But sometimes children's identities are made public before they've given consent. When a disabled child's parent has already blogged about their disability or shared photos and stories on social media, their condition has already been disclosed. And so this impacts on their friendships, future employers, relationships and esteem. A friend who is a mum and blogs about fitness told me she’s mentioned funny anecdotes about her children on her blog, but never named them. "I didn’t want my kids’ friends googling my kids’ names and finding embarrassing stuff about them on my blog", she said.

Something that's stuck with me for a long time is a post by a child psychologist. To paraphrase, James' mum asked her Facebook friends how to treat James' bed wetting - she did it with good intent, seeking advice and thinking others might feel less alone by her sharing her story. The next day, James' school friends laugh and tease him because they heard he's wet the bed. All the school mums were talking about James wetting the bed, and this filtered to their kids.

There’s been a recent influx of well-intentioned yet saccharine personal and mega-blogs devoted to disability stories told by parents. These sites ultimately provide support to parents and carers and medical professionals, rather than people with disabilities. writers are new parents - new to the experience of disability - conquering life one inspirational meme at a time. And most articles by parents outshine the articles by people with disabilities. Intent on educating at all times, parents have become our voice.

American disability activist Emily Ladau wrote a piece for Think Inclusive discussing who should speak for the disability community. She raises the issue of parents and carers speaking for their child, "Support networks are usually well intentioned…but in many cases, they take the power out of the hands of people who know themselves and their needs best: people who are actually disabled." Emily continues: "A lifetime of support is essential, but only when self-advocates are given the change to be the number one advocates for ourselves."

I wonder about the long term impact of parents sharing stories about disabilities online. Parent blogging is relatively new, but disabled children being thrust into the media spotlight is not. Quentin Kenihan, who has osteogenesis imperfecta, was made a child star age 7, when he was interviewed by Mike Willesee. His story was covered in the media for years. During that Twitter chat, Quentin told me he wishes he could have given consent for his story to be told 33 years ago. He discussed the issue of parents telling their child’s stories: "It was a well intentioned act that can go very wrong like it did for me until I took control of my choices." As an adult, Quentin has chosen the way he wants to be represented – through performances and media appearances on his terms.

I understand parenting children with disabilities is hard and isolating, and that parents need an outlet. Parents are wonderful (and sometimes the only) advocates for their children. And so many others will relate to their stories - so that is positive. (I know firsthand just how cathartic and supportive blogging about disability can be.) But is airing such personal, complex details and feelings about a child’s disability online the right thing to do?

It is a fine line between awareness raising and shaming.

This was originally published on Daily Life.


I read a tweet the day I sent this article to my editor: "@MelissaHawks: I hope you writers out there stop playing it safe. I hope you write the things you know you're supposed to write even if they terrify you."

I wrote about an issue I feel very strongly about - parents who overshare details about their child's disability online. Parents are great advocates but sometimes they can advocate to the detriment of their child's privacy and dignity.

I've received so much great feedback - especially from parents of disabled children. I've made them consider their child's privacy and identity. That's all I can hope for through my writing. And my editor said I was "killing it". (It's been shared over 7000 times!) Thank you.

But I've also received some dissenting views, and that's ok. I want to expand on my article here.

Here are some actual examples of oversharing I've seen on blogs and social media recently: a parent posting naked photos of her little one in a Facebook group (only last night), a parent writing that they felt robbed when their daughter was born with a disability, complaints about the way a child's disability inconveniences the parents' life, a photo of a bleeding, naked child on Facebook - because their mother was desperate for answers, stories of autism melt-downs and parents making money from their child's story through running ads and sponsored posts.

I've been blogging (and a reader of blogs) since 2001 and so have seen many questionable practices. I really do think the way some - not all - parents share stories of their children (with and without disabilities) online will impact the way they grow up. And my photo has been misused and I've seen others' (including children's) who have been misused too.

But I've also seen MANY more great examples of story telling and connection online! I don't believe sharing happy photos or stories about a child's milestones is over sharing, and I encourage and value community building for support and connections. A good measure of what to post about your child is to think about whether you'd like that written about you online, or would you like others to see you in a vulnerable way, or is this something that should be discussed in the privacy of a doctor's room?

If you are familiar with my writing, you'll know how passionate I am about sharing stories via social media. It is so empowering and reassuring for many - and makes people feel less alone. By all means, share stories, but consider the impact.

(Picture: Delicate by Coley Christine from Unsplash)

27 July 2015

Tim McCallum on The Voice Australia. Have a think about why you think someone with a disability inspirational.

When Jessie J cried upon hearing 34 year old Tim McCallum's performance of Nessun Dorma on The Voice last Tuesday night, I immediately thought of Stella Young's stance on inspiration porn. You know, disabled people applauded for doing ordinary things. Like banking or working.

Tim is a brilliant singer, who just happens to be in a wheelchair. That's his backstory. Like X-Factor winner Dami Im was born in South Korea and came to Australia when she was nine. Like Shannon Noll worked on the family farm prior to coming second to Guy Sebastian on Australian Idol. And like Karise Eden was a foster child. Those are the facts of their lives. Every successful reality TV star has a back story. That's the dramatic effect the producers employ. Contestants rising above adversity tug at the heart strings.

One thing I like about talent shows like The Voice and Masterchef is the diversity they showcase. Contestants are from different countries and religions, have various disabilities and sexual orientations, which represents the richness of our community more than fictional TV.

Tim was paralysed from the neck down after a surfing accident when he was 19. He only has use of his arms.

Tim told The Voice coaches "My level of injury is quite high and I don’t have the use of my stomach and diaphragm ... I invented different ways to hit the notes.” Singing is hard work for him. Ricky Martin called him a "miracle", which might make disability activists uncomfortable, but it IS really amazing that he's trained himself to sing using different parts of his body. That's his reasonable adjustment.

The late Stella Young did great work speaking up about inspiration porn. She wrote "[Inspiration porn is] there so that non-disabled people can put their worries into perspective. So they can go, "Oh well if that kid who doesn't have any legs can smile while he's having an awesome time, I should never, EVER feel bad about my life". It's there so that non-disabled people can look at us and think "well, it could be worse... I could be that person".

Stella continued: "My everyday life in which I do exactly the same things as everyone else should not inspire people, and yet I am constantly congratulated by strangers for simply existing.

It's a regular occurrence for people without disabilities to be wowed by every day actions of those with disabilities. And parents of children with disabilities are treated as superheroes for well, just being parents.

Have a think about why you think someone with a disability inspirational.

Is it because their situation makes you feel better about yours? Or are they actually doing something really amazing?

Tim McCallum is not just doing something ordinary. This guy isn't just buttering his toast or doing the groceries while in a wheelchair. He's singing opera live on national prime time TV. Being judged by international singers and social media audiences.

And I think we need to give him credit for his achievements. Making The Voice is a big deal for anyone. He's been a singer for years - and this program might just give him the break he needs.

Sarah Barton, founding series producer of No Limits - the community TV program that launched Tim's media career (and where he shared the desk with Stella Young) believes it is great we are seeing positive stories about disability in the media. "Anything that puts a disabled person in the spotlight alongside everybody else, achieving something is fantastic", she says. Sarah has known Tim for many years and says his aspiration has always been to sing.

Tim's not calling himself inspirational, telling The Today Show "I try to blow that myth out of the water that you can actually sing while you're sitting down."
Tim McCallum on The Voice
We do need to question why Jessie J was moved to tears, and why audiences found Tim inspirational. Was it because Tim has a disability, or because he's got amazing talent? Perhaps it's also because the show's judges, producers and audience haven't been exposed to disability? And are they reacting the same emotional way to contestants without disabilities?

The ongoing problem with the portrayal of people with disabilities is they're only ever tragic or heroic, never just living an ordinary life. I think Tim just wants to sing - and working hard at his talent - and his talent is a part of his ordinary life. I don't think Tim wants to be a superhero in a wheelchair. I think he wants (and deserves) a record deal and a season at the Opera House.

This was originally published on Mamamia. 

24 July 2015

Tips for meeting people at blog conferences.

Flower and cheese on biscuit, captioned: tips for meeting people at blogging conferences.

It’s three weeks until the ProBlogger Event (#PBEvent). I cannot wait. I’ll be in my element, learning about all things blogging and being surrounded by likeminded people, and I’m also glad for the warmth of Queensland.

Blogging conferences leave me inspired and drained. It’s exhausting learning, networking and socialising. (And drinking.)

I seem to be an extrovert, but I really do like my alone time. At times, I feel socially awkward, not knowing what to say or who to talk to. I have had to work really hard to put myself out there after so many years of feeling alone. I do get overwhelmed - especially because I am easily recognisable but don't recognise others very well – and I hope that my vagueness doesn’t make me seem unapproachable. If I don't recognise you, say hello and let me know who you are!

Kelly Exeter wrote a great post on kicking arse at a blog conference as an introvert, and Talking Frankly wrote one about the difficulties of being an extrovert (I admit to being intimidated by her when she told me she would out-tweet me last year!). The aim of my post is to provide some advice about meeting people at blogging conferences - whether you're an introvert or extrovert.

Bloggers are people too.

There are no celebrity bloggers. No blogger is better than you just because they’ve been around for longer or won an award or belong to a really cool group. They are just bloggers who are people too. Thinking like that can lead to disappointment!

Remember that blogger you place on a pedestal was also once starting out as a blogger.

Don’t think that someone doesn't want to speak to you. They might be dealing with their own anxiety or networking with a brand or catching up with a friend they've not seen in ages. As mentioned, I was on the receiving end of someone being disappointed when they met me – and that hurt.

Go up and say hello!

A blogger recently told me they sat at the same table as me for a day-long event but was too shy to talk to me. So I didn’t get to discover how awesome she is, and she told me she left regretting not saying hi.

Don't be too shy to talk to someone you admire online in person- just go up and say hi. It makes me sad when other bloggers tell me they were too scared to talk to me – because I genuinely want to meet so many wonderful people. Speaking of, I caught up with Clare recently - I love this lady and don't see her often enough!

Me with Clare Reilly at Voices blogging event

Make time to catch up.
If you really want to catch up with someone there (and not sure if you will get time or be confident walking up saying hello), send them a tweet or PM beforehand saying 'I love what you do and hope to see you at Problogger, fancy a coffee at 8 am?'. They’ll probably be really flattered and love to spend time with you. Catching up might lead to opportunities like guest posting or collaboration on exciting projects!

I have this personal motto that might seem a little up myself – but it’s something I try to follow at conferences. ‘Make myself known to those who need to know me.’ So, if there’s an editor I want to pitch myself to, or a brand representative that I’d love to work with, I’ll go chat with them, give them my business card and tell them I really like their work.

Don’t be haunted by the comparison thief.
It’s easy to feel like everyone’s doing so much more than you! Blog conferences showcase speakers who have had oodles of success – making a full time wage, getting a book deal, speaking at amazing international events, partnering with global brands, getting ten thousand hits a day, nailing SEO… You might leave feeling deflated. Or you could leave feeling inspired. I just want you to leave feeling that you and your blog are enough. If 100 people read your blog a week, that’s enough. If someone has written to you to tell you you’ve helped them, that makes blogging worthwhile.

Take some time out for you.

Blogging conferences can be overwhelming. So many people! So much information and advice to take in. And I’ve felt a real sense of evangelism being surrounded by people who just it. They just get blogging and personal branding and social media for social good. I also tend to live tweet every session I attend, which makes me concentrate really hard. By 3.00 pm, I feel burnt out.

So it’s nice to retreat to my hotel room, spend some time at the bar or pool with a friend, or even taking a few deep breaths in the toilet (even if it means being discovered by a fangirl – which is REALLY flattering, seriously!).

Don’t try to do it all at a blogging conference. Skip a session each day. Zone out on the plane before and after the event. Get some good food into you. Order room service. Hug a friend. Be yourself.

I’m booking a manicure this year. I just want to be pampered.

Flowers with caption 'You  wouldn't  know it, but  I'm a  bit of a  wallflower!'

Are you going to Problogger? Any tips? Please say hello!

Click here for more blogging tips.

20 July 2015

Lost for words

It's been about a month since I've felt like writing. I'd written something for Daily Life - it was an interesting and important topic - and that was the last thing that left my heart beating with excitement after the words made sentences, paragraphs and then a story.

I've got many ideas. There is never a shortage of issues to write about. There are so many that I worry someone might pip me at the post and write an article on that topic before I do! But I've also got a case of the can't be bothereds. I'd rather be doing nothing than writing at the moment. Life is busy. When I get home from work, writing is the last thing I feel like doing. Weekends are filled to the brim with outings and errands and naps. Writing has taken a backseat.

Outside influences have definitely contributed to my literary malaise. They shouldn't but they do. Criticism is an occupational hazard.

I've been told I'm a shit writer. (And on the same day I filed $2800 worth of invoices. Success is the best revenge.) I am criticised for starting too many sentences with I and And. Is that all those readers got from my writing?!

A blog reader sent me an email about how disappointed they were when they met me. Signed it with two kisses. Ouch.

And last week I read a piece about the pitfalls of activism by disability activist Emily Ladau. I feel this way a lot. It's one reason I haven't felt like writing a lot lately. I worry people without disabilities think activism is aggressive, or that it makes them uncomfortable. And "I should always wear an activist hat" implies we are grumpy and always on the lookout for things to be offended at (to an outsider). But I won't stop raising important issues. Because as Martin Luther King Jnr said, "Our lives begin to end the day we become silent about things that matter."

The way others feel about me shouldn't matter, but they do. Us writers are sensitive souls. And I hate blogging about not blogging, though at least this is something.

I wondered if I'd ever give up blogging? Will I just run out of puff? Maybe, but not now. I'll be lost for words until they come again, and that's ok. The passion is still in me, I know it. I've done a few exciting things (interviews, Twitter chats and workshops) recently and talking about blogging gives me a buzz like talking about my fiancé does.

For now, I'm keeping well read (and listened - I love podcasts!), trying to stay rested and microblogging over on Facebook and Instagram.

See you when my words come back. Soon I hope.


13 July 2015

Five ways I manage my Ichthyosis in winter.

It's been a bitterly cold winter in Melbourne (and much of the East and South of Australia) this year. Days range from three to 12 degrees Celsius. Winter weather started in May - so we've had a good two months of cold already, with two months to go! Brr! I really like the cold, but this year, I am hanging out for a break to the Gold Coast next month - longing for a little warmth.

It can be almost as hard to manage Ichthyosis in winter as in summer - perhaps because of the difficulty we have in regulating our temperature. I (and many others with Ichthyosis) prefer the cool weather though, but there's still a need to take care of ourselves in the winter. Here's how I manage.

As always, this advice is based on my own experience. Please seek the advice of your dermatologist before trying any new treatments. 

Wear warm layers of clothes.

I feel so cold - almost all the time. It takes me ages to get warm! 

I dress warmly. During winter I wear three layers of clothes on my top half (a thermal, a jumper (sweater) and a dress/nice top), stockings or leggings plus sock (and a skirt or pants if I'm not wearing a dress)s, boots and a coat. 

Two of my layers are always made from natural fibres - I love merino wool as it's soft, non itchy and washes well (I can wash in hot water and it doesn't shrink too much).

My thermals used to be polypropylene but they made my skin weep and smelly, and so merino it is! 

I also wear a scarf - again, usually made from natural fibres and gloves (though not every day because they stop me from using my phone!).

And I make sure my feet are warm and dry - I picked up some great leather boots on sale and got them in two colours which I wear every day. I was wearing synthetic boots for a long time and water seeped in, making my feet sore.

(photo by Pip)

I don't worry about overheating as much in winter. Just because I feel hot to the touch doesn't mean I am overheating - my body is usually losing the heat therefore my skin feels hot. I can always remove a layer. 

Keep my head warm.

I often wear a hat in cold weather - especially after I've combed my scalp - because I feel the cold so much through my scalp. I wear hats. I don't even care about hat hair - I leave my hat on most of the day! I don't apologise about wearing a hat at work anymore - I figure it's my reasonable adjustment!

Order a different consistency ointment.

In the summer, my ointment (cream) - which is a mix of soft white paraffin and liquid paraffin - melts in the heat. I manage this - not by putting it in the fridge but by changing the consistency to 70% soft white paraffin and 30% liquid. In the winter, it doesn't need to be as thick, and so I get 60/40 . The consistency of my cream helps it adhere to my skin.  The pharmacist makes up my creams by request.

Wearing ointment on my face makes me so cold in the wind! A hat and scarf helps!

Keep hydrated.

Just as the hot weather dries out my skin, the cold weather does too. It's mostly the wind, but in recent years, I've noticed how much heaters do too. I stayed in a hotel in Sydney last week and didn't drink as much water as I usually do. I had the heater on overnight - what a luxury! - and woke up very dry.

I try to have at least two litres of water a day, plus a cup of tea or two. And I make sure my hands and face are well moisturised - with paraffin (face) and pawpaw ointment (hands).

Boost my immune system.

My doctors have told me there is a link between a deficient immune system and Ichthyosis. Fortunately (touch wood) I am quite hardy and rarely get sick with a cold or tummy bug. But I am aware of my susceptibility to sickness, and so I get a flu shot every year and try to avoid people who are sick. I also eat good food - lots of fresh fruits and vegetables. When I get a cold I take vitamin c.

What about you - any tips for managing in the winter months?

10 July 2015

Poster children for disability charities.

Photo of stairs with a picture of Mt Everest, depicting struggle of stairs for mobility impaired.

Lilith Black*, 37, feels forgotten by disability support providers, and does not get that support she was promoting as a poster child for a large Victorian disability organisation. She tells me wistfully that she was treated like a rockstar as a child, but now sometimes has to miss out on seeing her favourite rockstars because of unreliable support workers and a lack of income.Lilith has Cerebral Palsy, uses a wheelchair and her speech is affected by her disability. She relies on support workers to shower her, cook for her and take her out. If her support worker doesn’t make their shift, Lilith struggles with accessibility. And last week she had to wait for more than six hours to go to the toilet. "It is a day-to-day exercise in begging and it feels like I need to justify every basic need. I fight hard for privacy, dignity and choices in my lifestyle. And people expect me to look normal."

As a child, she endured painful therapies that her body could not handle. Lilith believes she was "forced into an appearance of normality [but] I didn't want to look better to fit in." She was involved in advertising campaigns for the disability organisation - they took photos of her at school and while she did physiotherapy. "It was long hard days for a little kid. I thought people liked me, but I didn't fully understand why I was chosen. I suppose it was because I was deemed to be cute and bubbly. I did have a choice and I agreed because I thought I was helping kids like myself and my parents had good intentions. I didn't ever know what support came through due to the campaigns."

She was their poster child - used to tug at donors’ heartstrings - a representation of where their funds were going to. But the funds have been significantly reduced over time, and she’s not leading the independent life she was promised or promoted. Lilith believes disabled peoples’ involvement in charities can be damaging. "It severely disempowers people with disabilities, by framing them as both helpless and- hopeless individuals", she said. "They are trying to evoke sympathy and blind compassion in the donating public and I think this is wrong."The charity model of disability can be attributed to Lilith’s lack of independence as an adult, and the need for her to perform like a monkey for fundraising as a child. The charity model of disability suggests that the needy should be helped.

However, advocates believe that this model portrays people with disabilities as a tragedy, for non-disabled people to take pity on to feel better about themselves. Disability Planet, a UK-based advocacy organisation believes many disability charities are focused on fixing medical conditions, rather than enabling independence. The organisation also believes charities "reinforce negative stereotypes of disabled people, particularly through advertising and marketing".A 1992 article in New Philopsopher uncovers the business of disability charity advertising."Charity advertising sells fear, while its commercial equivalent sells desire. Charities promote a brand not to buy, but to buy your distance from."

And this ideology supports the image of despair, need, overcoming, and sometimes confronting aspects of disability that charities use in their campaigns. While Cannes praises advertising companies for inspiration porn, The Gammy Awards highlights the problem with disability charity advertising.

The Gammy Awards website states "Charity ads depict people with disability as victims of circumstance, tragic figures who are deserving of pity. Its often the most common way people without disability learn to define and explain disability. Traditionally used by charities in the competitive business of fund-raising, the application of the Tragedy/Charity Model is graphically illustrated in many Australian television and radio advertisements. Whilst such appeals raise considerable funds for services and equipment which are not provided by the state, many people with disability find the negative victim-image thoroughly offensive."

Lilith told me the disability organisation no longer needed her when she went to a mainstream school aged 10. It appears it’s not uncommon for disability organisations to no longer need disabled people to represent them when they get "better".

Merritt is in her mid 40s and lives with the severe skin condition Ichthyosis. She found some skincare products that worked for her in the mid 1990s - changing the appearance and texture of her skin. She realised just how much her skin improved at a dermatology conference she attended in 2000 when she met others with Ichthyosis. Merrit was was presented as a "success story". She said patients and parents saw "there is a possibility of improvement with time and perseverance."

Merritt told me that managing her condition with topical retinoids has meant she no longer feels valued by a charity supporting Ichthyosis patients and families. Merritt’s skin has significantly improved since childhood, and now the charity that helped her as a young woman no longer wants her to share her success story with others, despite her advice helping younger patients. "It’s not like I’m the poster child for Ichthyosis anymore. No one will fund research to find a cure if your skin appears normal", Merritt laments. She is very disappointed, especially given the support she received from them, and the donations her family made.

The Gammy Awards team doesn’t believe all charities are detrimental - they are fundamental to supporting our most vulnerable. But they believe charities need to move from the charity model of disability, to empower disabled people. "We do need to educate charity managers and professionals to review the way they operate and ensure that funds are channeled to promote the empowerment of people with disability and their full integration into our society as equal citizens – requiring our respect and not our pity", the Gammy Awards’ website states.

The Australian Council for International Development’s (ACFID) code of conduct is helping the charity sector move in this direction, expecting its signatories to respectfully portray people in their campaign material. ACFID’s code states "Signatory organisations will ensure that the use of images and messages portraying women and men, boys and girls in their communications respects the dignity, values, history, religion and culture of the people portrayed." Signatories of the ACFID code are obliged to depict "images and messages of women and men, boys and girls...in a dignified, respectful manner, portraying them as equal partners in the development process."

Charity campaigns that are consented to and allow collaboration with people with disability are empowering. Todd Winther, a Youngcare resident, takes control of how he is portrayed in the charity’s campaigns. 31 year old Todd has Cerebral Palsy and has lived in Brisbane’s Youngcare facility for two and a half years. He’s doing a pHD in politics, works part time as a political journalist, and enjoys seeing live music - which he can do more of now he lives in Brisbane. Todd told me: "Youngcare has provided me with supported accommodation that allows me to live independently and autonomously: a very rare occurrence for someone with a severe physical impairment like mine."

Photo of Todd Winther at Youngcare

He is directly involved in Youngcare’s fundraising campaigns. The not for profit organisation receives no recurring government funding. Todd co-wrote and starred in the national TV campaign which launched Australia-wide on the Nine network in October 2014.

Samantha Kannerley, Youngcare CEO, is committed to preserving the dignity of people appearing in Youngcare’s advertising. They are mostly grant recipients and sometimes Youngcare residents who provide full, informed consent to appear. "Youngcare will only print or produce what a person is happy to share in the context in which they have consented to. What is shared is usually a success story of how a grant has helped that person to remain at home or to leave aged care", Samantha said.
Todd believes Youngcare as an entity is aware of and avoids disability stereotypes. "I am consulted and contribute to everything I’m involved in, and my opinions are not only highly valued, but considered to be integral as to how the organisation operates",Todd said.

Todd feels empowered because of Youngcare, and is committed to ensuring the organisation receives funding. "With the help of Youngcare I’ve gone from a person with no power, to a person with absolute power in how I live my life. My speaking engagements with corporate donors, and my participation in marketing campaigns to encourage members of the public to donate is vital so that Youngcare can continue to do their fantastic work."

He hopes to change the perception of disabilities through his involvement in Youngcare campaigning. And this positive portrayal also helps donors see the difference they’re making to residents. "The fact that I am studying, and working indicates that I am living a ‘typical’ life of a person my age. It is unlikely I would have been presented with these opportunities if I did not live in accommodation provided by Youngcare, so my studies and my job as an academic researcher provide a ‘real world example’ of the impact the organisation has on my life", Todd said.

An edited version of this has been published on Daily Life.

*Lilith Black is a pseudonym. Name has been changed on request.

Photo by Arturo de Albornoz, American Disability Association (tm) - Estados Unidos - 2007. Used under a creative commons licence.

06 July 2015

Six awesome podcasts hosted by women

I am totally addicted to podcasts. Maybe it's my need to be switched on and want to soak up views of so many others all the time? It's a really effective use of my time - a way to learn without reading. And since my last podcast post, I've found six more podcasts that I love and recommend - these are all hosted by women.


Stripped- hosted by Sarah Meehan-Sirk - is a summer series on CBC Radio in Canada. I’ve come to know about the show because Sarah asked me to be on it! The series explores the link between our bodies and the world. The show I featured in is about skin, and I spoke about skin hunger and Ichthyosis. Hear my episode here.

The Mystery Show is another Gimlet production (from the same people who make Reply All). It's hosted by Starlee, who I find so charming. As the title suggests, it's a show solving mysteries. But it's so much more than that - Starlee goes on the most wonderful tangents. I was hooked after hearing The Mystery Show preview on Reply All. It was about Britney Spears. So good.

Chat 10 Looks 3

This is hosted by two of the smartest and funniest women in Australian media, Leigh Sales and Annabelle Crabb. It's very basic - sometimes they're recorded in their car, others in the ABC's piano room. And it's very funny. I most love Leigh Sales' showtunes. The pair have fantastic charisma and listening to their conversations is a treat! They are so lovely! And funny. And I wish I could have a good ol’ chat with them too.

Save the Date Wedding Podcast

Save the Date Wedding Podcast is hosted by comedian Aleisha McCormick. This is such a fun wedding planning show that's given me lots of ideas. It's also really inclusive, promoting marriage equality. Pip Lincolne introduced me to this at the start of the year, and it’s become a valuable part of my wedding planning.


Assumptions on Radio National features Susan Carland (Waleed Aly's wife) breaking down assumptions about many things - living alone, female pilots and male midwives, to name a few. It's informative, funny and I want more.

The Nitty Gritty Committee with Meshel Laurie. 

I love Meshel's blog because it's much deeper than what we hear from her on commercial radio. So when I saw she has a podcast out, I was very excited. I've listened to a few episodes - Sam Johnson (actor) and Kerry Tucker (former prisoner) have been my favourite. I wish they were longer episodes. Great stuff. 

(For information about how to listen to podcasts and how to make them, visit my previous podcast post.)

Have you got any more podcast recommendations?


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