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Inspiration and objectification of people with disability - a resource for teachers and parents

 

(Photo of woman in wheelchair, playing sport. She is smiling. 

Text reads: "Inspiration and objectification of people with disability - 

a resource for teachers and parents.")

A few weeks ago I received a message from a regular blog reader, Sue. 

Sue asked me if I knew of any resources for parents and teachers that teaches young people about the impact of inspiration and objectification on people with disability. She and a friend wanted to see something written from the perspective of a disabled person, that was "informy, rather than blamey". She wanted it to be in palatable language for a broad audience.

Sue told me about her little girl Eliza, who has a disability. 

"Eliza is little for age, self propels a wheelchair better than Captain Risky, and has little time for people her try to step across her. As a result, she has heard it all " wow she's so clever with her wheelchair" "look a baby in a wheelchair" "poor little girl" "makes you realise how good my life is when I see your daughter" "I wonder if she'll out live you?" "Is she terminal?" "Hello little girl, you are so brave.

"I can only interpret what I see on Eliza's behalf and as far as she is concerned, she is 5 loves kindy, her big brother, swimming, her iPad and her swing. She hates cleaning her teeth, is indifferent to food other than milk and would like to rid the world of hair brushes."

When I received Sue's message, I did a Google search, and I couldn't find anything suitable either. So I gave Sue my phone number, she called me and I offered to write a blog myself. Sue has commissioned me to research and write this, and has paid me to do so. Thanks for trusting me, and for the challenge, Sue! 

I'm using the terms "inspiration objectification" and "inspiration as objectification of people with disability". I've avoided the elephant in the room, while giving the amazing Stella Young a lot of credit and respect for the work she's done to initially raise this issue. 

When I've previously mentioned inspiration as objectification of people with disability, using the term Stella Young coined, some people have felt uncomfortable. They don't like the term, so deny it exists or don't want to look into the issue further. This happened a lot during the #crippingthemighty discussions  While I never want to censor myself, sometimes I realise the need to soften language to make serious issues more palatable, to reach an audience that needs to hear it.  There is definitely a need for this post.

This post links to articles and videos  about inspiration objectification that might require parental or teacher supervision. It also contains photos that are ableist, and links to websites I wouldn't usually link to. I do not endorse this type of content, it's here to exemplify. It's a long post, with lots of quotes from almost only people with disability - I wanted to make this as informed and balanced as possible. I hope it's useful. 

What is inspiration objectification?

This illustration is a great first glance summary of inspiration as objectification of people with disability. 

 

(Illustration of people cheering on a person in a wheelchair, holding patronising signs including "handicapable".

 The heading is "Spectators". )

It's called "Spectator" and the image by Jessica and Lianna Oddi of The Disabled Life - used here with permission. 

The late Stella Young, disability activist, writer, speaker and comedian, wrote and spoke about the problem with the objectification of disability though social media memes and mainstream media. In her 2014 Ted Talk, Stella said:

"I am not here to inspire you. I am here to tell you that we have been lied to about disability. Yeah, we've been sold the lie that disability is a Bad Thing, capital B, capital T. It's a bad thing, and to live with a disability makes you exceptional. It's not a bad thing, and it doesn't make you exceptional.

"And in the past few years, we've been able to propagate this lie even further via social media. You may have seen images like this one: "The only disability in life is a bad attitude." Or this one: "Your excuse is invalid." Indeed. Or this one: "Before you quit, try!" These are just a couple of examples, but there are a lot of these images out there. You know, you might have seen the one, the little girl with no hands drawing a picture with a pencil held in her mouth.You might have seen a child running on carbon fiber prosthetic legs". 

She continued: 

"...they objectify one group of people for the benefit of another group of people. So in this case, we're objectifying disabled peoplefor the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, "Well, however bad my life is, it could be worse. I could be that person."

You can view her Ted Talk and read the transcript here. 

Stella's talk had me (and many disabled and non-disabled people) thinking about inspiration objectification. Stella's famous term has even been cited in the American ABC series Speechless - it's so good to see this in pop culture.

Inspiration objectification is quite easy to spot when you know what it is. Here are some examples:

It shows a picture of disabled people living life and asks non disabled people what's their excuse? 

(Photo collage of a boy in wheelchair holding a basketball, with the text 'Your excuse is invalid' on a black background. There are other kids behind him.)

It shows disabled people doing "normal things", suggesting seeing this will make non disabled people smile. I put normal in speech marks because the use of the word is othering. 

It shows non-disabled people doing good deeds for disabled people - feeding them chips at McDonald's - "serving us all lessons in kindness": or taking them to the high school dance  These stories usually always go viral. The person with disability probably never gave their permission for the photo or story to be used in a meme or told to the media.

It's stories of disabled people miraculously walking, overcoming their disability. 

It's showing people with disability as heroes or "super disabled" - like this story of the body builder who is "hailed as an inspiration". 

It's perpetually infantilising, showing non-disabled people giving disabled people the opportunity of a lifetime - like this video of a young man helping operate the checkout (also read how people are inspired by him in the comments). 

It implies disabled people can inspire, just through existing. 

 

(Photo featuring woman in a wheelchair, facing the sea. Text reads: 'never ignore someone with a disability, you don't realise how much they can inspire you. share if you agree'.)

It's merely associating the word inspiration with disability - like Inspiration Island, a park for people with disability.  

It's taking pity on people with disability, though asking for prayers on social media posts. Stop that!

It also implies parents of children with disability are more heroic and better equipped than parents of children without - like this meme - I made it myself! (I'm thinking of the irony if it's shared!)

 

(Shareable graphic featturing a pink watercolour heart, with the text God only gives special needs children to special parents".) 

Of course these social media posts and articles I've linked to are problematic. They are often also ableist  - you can read about ableism here. 

Inspiration as objectification of people with disability sets and perpetuates low expectations about us. 

It portrays disabled people's lives as tragic. It also praises us for just living life - as Stella said, implies we are exceptional for doing every day things like working a long career at McDonalds. 

It makes other people feel good (you can tell this from the comments threads on social media posts - but often those people are not interested in improving and maintaining disability rights!). 

It often features non-disabled people, doing a good deed for the person with disability - and they're praised for their deed. 

And if a disabled person makes their own media - like the woman with no arms who does makeup video tutorials - the media often frames this as "normal" or "extraordinary". 

Now that I've given you some examples and described how they're problematic, I want you to think about what these social media posts and articles would be like if you replaced "disabled" or "disability" with the words "black" or "gay" or even "woman" or "man". Do you think reporting like this about people without disability would be acceptable? No. 

The Indiana Governor's Council Governor for People with Disabilities is holding Disability Awareness Month in March. The 2017 Disability Awareness month campaign theme is "I'm Not Your Inspiration." 

The council has created some great resources to make people think twice about circulating inspiration objectification images and articles, and help stop seeing disabled people as inspirational just for existing. You can download classroom and workplace posters from their library for free. 

I am not your inspiration, I'm your classmate:

 

(Photo of a school boy with the text "I'm not your inspiration. I'm your classmate". 

The photo is in black and white and there is orange detail on the poster.)

I am not your inspiration, I'm your co-worker:

 

(Photo of a woman in wheelchair. text reads "I'm not your inspiration, I am your co-worker.".

 The photo is black and white, and the poster has pink and purple detail.)

These are so useful! 

I realise this post, as an educative resource, is super long. Parents and teachers might just want to use the content until here, or continue reading to find out how inspiration objectification makes people with disability feel. 

What if you're a subject of a Facebook post aimed to make people feel inspired by or pity for you? 

Last year, my teenage friend Stella Barton was featured on a Facebook page featuring stories and photos of people in Melbourne. Her photo was not used, but the page creator wrote a story about her, after seeing Stella and her friend (also with a disability) at the train station. The post received a lot of heart-warmed comments, and even Stella's friend was ok with it. But Stella wasn't ok with it - she asked for it to be removed. 

 

(Photo of Stella Barton and Carly Findlay. 

They are both smiling and are dressed fabulously in green and pink.)

Stella told me how she felt about being heralded as an inspiration on Facebook. 

"It was funny because [my friend] wasn't bothered by it but I thought it was strange that it was so exciting for the person who wrote the article that two disabled people were doing their own thing - supporting each other getting through crowds of people, and that was remarkable enough to write an article about us. 

"As a visibly disabled person you get used to being stared at a lot in public but it's another thing for people to assume they know what's going on in your life and write s story about it.  

"They actually made up the fact that I was crying and that just made me embarrassed. They also used my name in the story without my permission and so my Facebook friends immediately knew it was me which annoyed me. 

"But this is all my opinion and if you asked [my friend] about it she wasn't bothered at all by it. We just have different views about it."

Last week, Adam Pearson found his photo stolen and misused on a clickbait Facebook page. The owner pitied him, calling for people to wish him a happy birthday. Hundreds of sheeple blindly followed instructions, wishing him a happy birthday. Adam is a self confident, articulate and successful TV star and producer. And it wasn't Adam's birthday.  

Not one to shy away from self promotion, he took advantage of the opportunity to promote his own page and YouTube channel. 

 

You can see the original post misusing Adam's photo on the left - saying no one wished him a happy birthday because of his facial disfiguremeant, and asking people to wish him happy today and not to judge. On the right is a video from Adam, which you can watch here. Adam's text, prefacing the screenshot and video reads: 

"Well, whilst it STILL isn't my birthday I'm never on to shy away from self promotion. 

Please me my "Birthday" special by following me on twitter and Subscribing to my YouTube Channel

Love ya xxxx"

How does seeing inspiration objectification in the mainstream and social media make disabled people feel?

I asked some activist friends how they feel when they see articles praising non-disabled people for hanging out with disabled people and photos with the phrase "the only disability in life is a bad attitude" (and similar). 

Cara Liebowitz says: 

"It makes me feel tired, honestly. Because I experience it SO MUCH. It has a negative effect on the way people see disability because it makes us seem like we're superhuman just for doing ordinary things, which stems from the stereotype that all disabled people do is sit at home and collect a check from the government. And some disabled people do that, because they can't work for whatever reason. But they still have friends, hobbies, they're still well rounded people. Inspiration [objectification] turns us into caricatures."

Kyle Khachadurian, who hosts The Accessible Stall Podcast  with Emily Ladau, tells me:

"I just find it vacuous. It doesn't bother me, it doesn't offend me. I don't get up in arms about it. It's the most inane, pointless thing. It means nothing. All it does is make someone feel like they've done a good deed for the day somehow "on my behalf" because they said something to me and it's like, ok but now what? Are your perspectives actually changed because if not you actually did worse than if you'd done nothing at all."

Emily Ladau says:

"Inspiration [objectification] used to be a punch in the gut every time I’d encounter it, but it’s so commonplace that I’ve had to steel myself against it. It makes me feel like I am nothing more than someone else’s object, an oversimplified source of warm fuzzy feelings with no regard to the complexities of my humanity. Every time I see someone sharing inspiration [memes or articles] or am treated as someone’s inspiration, I struggle with the fear that calling them out won’t help them understand why it’s problematic, but rather will only serve to make them perceive me as bitter. And while I actually don’t think it’s unreasonable for me to be bitter about constant objectification for the sake of good feelings by most of society and the vast majority of mainstream media...bitterness is not the issue. I just want people to recognize that I am only human, and if you’re going to be inspired by me, I’d like it to be for reasons other than that I got out of bed and lived my life."

(Listen to Kyle and Emily's excellent discussion on inspiration.)

Alice Wong, who founded the Disability Visibility Project describes inspiration objectification as:

"like a media hangnail. It's annoying and difficult to avoid. [It] is omnipresent and insidious. I feel drained just reacting to the same stories/cliched headlines over and over. I try to be selective about which articles warrant a response from me via social media because it often leads to unproductive discussions or misunderstandings about why "feel good" stories can be so harmful. 

"There's also the dynamic within the disability community of disabled people perpetuating inspiration [objectification] and embracing it.  Each to their own, I guess. We're certainly not a monolith and I'll continue to express my disdain."

Bill Peace feels the type of social and mainstream media I've written about here to be dehumanising. 

"[It] is based on antiquated notions about what life is like with a disability. The very idea is utterly dehumanizing. Typical life, it is assumed, is impossible. One is an inspiration or a failure. A person "overcomes" a given disability or is a failure. The failure is shamed by the "inspirational" hero. In individualising disability the social ramifications such as economic disparity, joblessness, educational barriers, social stigma etc. are conveniently dismissed as variables."

Karin Hitselberger  has used social media to take control of her image, to empower her.

 "Personally I'm a huge fan of selfies, and in a way, I kind of think of them as the "anti-inspiration", because what they do is they give the power back to the person being photographed. They let the subject of the story right the narrative and decide how they want to be seen. Instead of being stared at, or photographed out of context, selfies let you acknowledge that people are going to look, and that they see you as, "other", but they let you tell the story. They don't turn you into an object of pity, or a superhero, they let you be yourself on your own terms."

How does it feel to be called an inspiration because of our disability ? 

While inspiration objectification happens a lot in mainstream media and social media, it happens in "real life" too. As I  and many friends write here, it feels strange to be called an inspiration because of our disability - especially if it's merely for living. And maybe people calling us inspirations in this way is because of the memes and articles that seem to portray every disabled person as inspirational?

I get told I'm an inspiration quote often. Of course, it's one of the better bad words I've been called, but it bothers me because so often I'm just called an inspiration for existing, not for making a true difference in the world (which I do set out to do). I am not inspirational because I have a disability yet also manage to have a day job and a super busy freelancing career. I am not inspirational because I got married, even when so many made me feel I would never find love (and some told me too).

Sometimes when I write an article for a news website and it's shared on Facebook, a person will say "I see this lady on the train. She's such an inspiration." Wait what? I'm catching the train, usually to work, sometimes to dinner or to see a band or do some shopping. Just living life, not an inspiration. And their opinion of me is formed by seeing me catching the train, not engaging with me at all. They might see me ask for a seat if I'm sore, or scrolling through my phone - preparing my social media for the day, or see me get off the train for work. But they don't know me at all. I feel they have really low expectations of me and others with facial differences and disability if they are amazed to see me on the train. They could think my life must be so miserable that it's a wonder I can face the world, travel on a train and have a job. 

I don't mind being called an inspiration if I've done a really good job at something - like written an article that has made people think, or performed well at Quippings or even run a far distance on the treadmill (ha!).

Friends with disability tell me they feel awkward too - and even dislike - being called an inspiration. 

Camille says:

"If I'm doing something good that makes a positive difference in the world, then great. Just being and living the day the day isn't inspirational - it's just my life."

 (I'm inspired by Camille's ability to sew a dress in two hours! That's a skill, she said!).

Vanessa tells me: 

"Inspiration = A Saint (at least, in most people's eyes).  And I am definitely not that! 

I suspect I feel so strongly about this because I used to belong to a church group where people that just met me would call me, you guessed it, inspirational!  And after getting to know me, and seeing some of my quirks and foibles, they realised that I was simply a human being like them.

The thing is though, some of them started treating me badly from that point on — as if they were angry with me for no longer "being an inspiration" to them!

I wish they could have realised that nothing about me actually changed.  Only their perception.  And I guess I wish they had realised that expecting me to be their inspiration was kind of placing an unfair amount of pressure on me.  Like I was never allowed to be anything less than a saint!

I never asked or wanted to be anyone's inspiration."

Karin, who is the mother of Nico, a little boy who had a severe disability and passed away in 2014, wrote to me: 

"I don't have a disability but my son did as you know. I was at a cafe on a family holiday. He was peg fed (and in a wheel chair) so I hooked up his feed and apart from that we just sat around like any other family, chatting and minding our own business. A lady came up and patted my shoulder and whispered to me "I just wanted to tell you, you're an inspiration". My first instinct was warm fuzzies. How lovely to get such kind words from a stranger. It took a few minutes for it to turn into feeling almost an insult. What was I doing that was so amazing it warranted such praise and acknowledgement? I was feeding my 4 year old. Loving my four year old. Giving my four year old a family holiday in a nice place. What was the alternative? What was this well-meaning lady's expectation of a "normal non-inspirational" parent? Did she expect my life to be miserable? Did she expect my holiday to be away from my child? 

I know it came from a good place, I do. It's nicer than taking a wide berth and trying to avoid eye contact in case it gets perceived as staring. I was trying to think of a more fitting piece of encouragement and I think "you're doing a good job" or "you're a great Mum" wouldn't have given me that feeling because I would have accepted and appreciated that if I had have been having a regular day out with my daughter."

Bettina says: 

"I mind. I mind a lot. I'm just over here living my life, adjusting what I want to do within my limitations - doesn't everyone do that? Chronic pain/illness/disability or not? Why is it more remarkable for me to carry on doing ordinary everyday things despite high pain levels? Was I meant to have faded into a corner somewhere to sob quietly and give up on living? I don't know. It makes me wonder about people's expectations of what it's like to live with chronic conditions and frankly makes me not want to open up to many about mine."

Is it ever ok to call a disabled person 'inspirational'? Some people think so.

Like me, some of my friends don't mind it if they're called inspirational because they're doing something great. Something that's more than just existing. Sometimes it's because of their disability. They might want to be a role model or show people they can manage day to day, even though their disability is a hard slog. They want to show they can overcome. Sometimes why they're recognised as being inspirational by other people is partly to do with their disability - like running a support group, or being really good at wheelchair sport. 

Kaitlyn Plyley, who hosts the excellent Just a Spoonful podcast says:

"My disability is a chronic, 'invisible' illness, which society usually underestimates or mistakes for laziness. Instead of pity from strangers, I'm more likely to evoke irritation when I don't walk fast enough on the footpath. When my close friends, who know what I go through, tell me I inspire them, it means a lot to me. By the current government's standards, I am failing at life because I don't have a "good job that pays good money". Taking care of myself is not seen as a full-time job (it is), and the constant obstacles to living well with my illness are disregarded. I don't set out to inspire anyone. But it helps to hear sometimes, by people who know me (and aren't strangers throwing me a pity parade) that I am worth looking up to."

Jeanette Purkis says: 

"I have some issues with being called being 'inspirational' for everyday stuff like going to work or catching the bus. However I don't mind if it relates to my going from being a very unwell and disempowered prisoner and homeless person to an internationally published author, TEDx speaker and ACT Volunteer of the Year 2016  -I mean that sort of IS inspiring. It also depends on the context, If a friend or colleague says it and I know it's genuine that is fine but when it is used by people who don't really know me as a sort of throwaway statement and they probably say that about every person with disability they meet, that irritates me."

Robyn Lambird, who is a wheelchair athlete and model says:

"If someone finds my sporting achievement inspiring for example, that's a different kettle of fish. I've had to overcome more barriers than most people to even gain access to sport because of my disability and I'm constantly pushing to achieve more. I can see how people might relate to that adversity and how it might motivate them to tackle their own challanges and to achieve."

Meriah Nichols does set out to inspire people, but NOT because of her disabilities. She tells me: 

 "I have found it pretty outrageous the few times I've been told I'm an inspiration because of my disabilities, but it was the context that was outrageous, as in, 'because I exist, I'm an inspiration!'. 

"I think taking accomplishments and adding disability to the picture makes the combined package of 'inspiration' digestible for me. I am not an inspiration just because I'm deaf and have traumatic brain injury (TBI) and bi-polar disorder; but the fact that I speak proficient Japanese as a deaf woman, and the fact that I am so highly organized, live in a challenging physical environment and am consistently hard-working and energetic, while living  with bi-polar and TBI is something."

Kyri says:

"I don't mind horribly when people call me inspirational or admire me for doing what I do - sometimes it's bloody hard work to live like a normal person, and I appreciate the recognition. If they get super gushy I will feel uncomfortable, but mostly if I start to feel it's at all unwarranted/unwanted I'll try to politely redirect the conversation to the things I actually feel proud of. People mostly mean well, and I try to acknowledge that. 

"I think when we have to overcome major obstacles, especially if it's been necessary to create new techniques or something like that, it's good to be seen as inspirational. We've done hard work, we've created something. If it's just 'being in public like a normal person' that's obnoxious, but if there's real obstacles to be overcome like physical impediments that I or others have found a way (personally) around or hacked something that existed to work for us, that's worthy of recognition. A lot of the things that we take for granted as possible for PWD now are only possible because of those kinds of actions by people who are worthy of the term inspirational."

Quentin Kenihan, disability advocate, actor and media personality, is happy to call himself an inspiration. He has been in the media since he was young - often not through his own choice.

"I feel I am in a unique position. I have suffered over 560 fractures in my life. Despite that I have been successful in an industry that is competitive and driven on looks. For those reasons I feel I am inspiring", he tells me. 

"Not for simply been alive. I don't think being disabled is enough to be inspirational anymore. I feel that to be inspiring you have to have achieved something other than what society deemed possible. 

"Let's take your disability. Do I think it's inspiring that you have it? No not really. What makes you inspiring that even though you have suffered ridicule and persecution from others and you still choose to stand proud and advocate for yourself and others. That I find inspiring"

Elise implies that she can teach people inadvertently:

"I don't mind [being called inspirational]. It happens a lot. If I can help people not to whine about having a zit, great - I am all for it!  As long as their tone is not condescending."

And while Sonia doesn't like being someone's inspiration just for doing every day things, she can understand why she might inspire people.

 "I've never found my disability inspiring because it's not something I planned to have happen to me. I have problems with people thinking I'm an inspiration when I do things that 'normal' people do because if I wasn't disabled then I wouldn't be called inspiring for doing those things. BUT I know that the people who would call me inspiring are saying it because, to them, I really am inspiring because I realise that they can't know or imagine trying to do the 'normal' everyday things with disability.

"I don't set out to inspire people but if I can change peoples reactions and outlooks towards those with disabilities then great and if that is inspiring then others can feel free to think that", she continues.

"It can be seen as belittling but, in all honesty, if a person wants to belittle you then they can call you worse things than inspirational."

Some disabled people even feel there are bigger issues to worry about than media showing disability as inspiring.

Ryan Haack, who is a writer and speaker with a limb difference, believes that disabled people speaking out about inspiration objectification in the media is problematic. With reference to last years Super Bowl ads, which were deemed as inspiration, Ryan wrote 

"The fact is, differently-abled people aren’t represented very well in mainstream media. Some activists decry this injustice quite often. But then ads like these come out and those same people complain about them being “inspiration p***.” Frankly, it’s not a good look for our community. "

He continues:

 "As someone with a limb-difference, there are a lot of things I could get angry about.

Inspiring others – even if I think that inspiration is, perhaps, silly – is not one of them."

While I agree with Ryan that there are big issues for people with disability, representation us in media and advertising really does matter.

Lisa Egan gets to have the last word on when it's OK to call someone inspirational. She nails it.

"The word "inspiration" has been so misappropriated by non-disabled people that it's lost all meaning.

"You do your own shopping without help? You're such an inspiration."

Inspired you to do what, exactly? Go out and buy a pint of milk? Don't you need to do that on a regular basis anyway?

I pity non-disabled people and their ignorance which leads to a misunderstanding of language.

It is never OK to view someone as an inspiration purely because they're disabled. It can be OK to be inspired by disabled people when they've done something amazing like won a Paralympic gold medal; you can be inspired to get a bit fitter or pursue something else that's difficult but floats your boat. As long as you don't think/say "well if a disabled person can swim fast, I've got no excuse," because that's just a prejudiced presumption of incompetence.

In short; it's only OK to be inspired by a disabled person if you'd be inspired by a non-disabled person doing exactly the same thing. Would you be inspired by a non-disabled person putting on their own pants? No? So how is it inspirational when disabled people do that?"

It's complex, hey? There is no one answer, but I guess we all need to do our best not to perpetuate the low expectations of people with disability by creating and sharing content objectifies people with disability by implying we are inspirational just for living. And I hope the perspectives I've shared here make you understand the impact that inspiration as objectification of people with disability can have - both on disabled people and non-disabled peoples's perceptions of us. 

Further reading (As mentioned, these links may require parental and teacher supervision.):

Stop infantilising disabled people - Every Day Feminism 

Disability, inspiration and Michael J Fox - Words I Wheel By

Pity and the prom - Mike Mort

This body is not an apology

Once you see it, you can't unsee it - The Girl with the Cane

Is there something you would like me to write? You too can commission me to write a blog post too - contact me for my rates. If this post has helped you, or you're using it in your classroom or as a parent, please consider buying me a drink. 

Don't let the world make you feel your skin, face and body should not be seen.

I haven't blogged for ages, I'm sorry. I've done a lot in the media, though - that's why it's been so busy. This weekend I'm working on a big blog, and another secret project, so keep an eye out for those. 

Tonight I wrote this for Facebook and thought I'd publish it here. 

This is what ichthyosis looks like.

 
 

 

It's not often I show off my body - in photos or in real life. It's not that I am embarrassed of my body - of  the redness or super dry skin. I'm not embarrassed or ashamed.

I cover up because I am often sore, want to protect myself from the sun, bumps and scratches, and I'm always always cold. I want to prevent infection. Plus I use paraffin to moisturise and it's really hard rubbing against furniture etc. (People have told me to cover up in the past, or not to wear certain colours as they clash with my redness.)

I'm quite proud of my body. It's quite nice, really. And I'm proud that no matter how sore I get, that I sheds 28 days of skin in one day, and that it's itchy and prone to infection, my body keeps going. Like magic. I can move, I can think, I am happy, and gosh I look young (thanks rapid renewal freaky genes!).

I was very sore for a long time - a good (bad?) almost two years. My body didn't feel or look it's best, in respect of skin and weight/shape. 

But now I am experiencing much less pain, have less stress in my life, and have more time to look after me because I'm working more flexibly (but probably more than I did when I had a full time day job). I decided that it's time to go back to the gym today. I went for half an hour tonight, and hope to go a few nights after work from now on. I considered using the heated pool, too. So I picked up a va-va-voom pair of bathers and cute beach skirt after the gym. 

For the five minutes I tried on the bathers, I felt FABULOUS. I'm feeling (and looking) pretty well right now so I want to keep that up. I'm feeling comfortably back in my size 10 clothes again (though these swimmers are a 12 because BOOBS).

Adam isn't home to take a photo. But the kitchen lighting was flattering and I had a post gym glow, so I snapped some selfies. Hashtag no filter. Hashtag I need a selfie stick. Of course I sent the pics to him first - and I felt like a blushing teenager when he wrote back "wow you look amazing". 

If you've got a skin condition, or something else that makes you look different - cover up for comfort, not because you feel like you have to hide. Stop hiding! (So many people write to me saying they hide and cover up because they're embarrassed by how they look - I'm so sad to read their pain.)

Wear clothes that make you feel beautiful. 

Don't read the magazines that tell you dry skin and dandruff is unsightly. 

Ignore the people who stare at you. 

Remember the compliments you've received, forget all the nasty remarks. 

Don't let the world make you feel your skin, face and body should not be seen.

 

Has this blog post made you think or laugh? Why not buy me a drink to show your gratitude? Thanks! 

Here's the original post on Facebook if you want to check out the comments.

You are not a good disability ally if you're ableist.

This post contains some ableist language that might be triggering 

Yesterday I engaged with two people who excused their ableism by saying they work with children and adults with disability. No.

That's like saying you know a black person so you can be racist.

Knowing a disabled person, or working with them is not a free pass to be ableist or discriminatory. 

One person admitted to not wanting disabled people represented in media and advertising, and the other admitted to using "fucktard" around friends with disability. Both said they work with disabled people.

You are not a good disability ally or support worker if you use ableist language and cannot see the problem.

You are not a good disability ally or support worker if you don't listen to actually disabled people.

You are not a good disability ally or support worker if you say you've got friends with disability so it's ok to be ableist, discriminatory and don't see the need for disability representation in the mainstream.

You are not a good disability ally or support worker if you fail to amplify disabled voices, othering us and underestimating our ability. 

You are not a good disability ally or support worker if you regard your studies or work in disability to be above the lived experience of people with disability. 

You are not a good disability ally or support worker if you don't educate yourself about the problem with ableist language, ableism and discrimination. 

You are not a good disability ally or support worker if you fight ableism and discrimination with the same behaviour. 

 #everydayableism

(Here's a resource about ableism to get you started. Here's another on the R-Word.)

My wedding story in New Idea magazine! Why I'm changing the narrative of disability in the mainstream media.

 

Because I'm about changing the narrative of disability and appearance diversity in mainstream media, and also a freelance writer and need to pay the bills, I wrote Adam and my wedding story for New Idea  I wrote it in third person, and now New Idea claims me as their "favourite appearance activist". (Who's their second favourite?) I'm two pages behind Osher Gunsberg's wedding spread, so I guess a spot on commercial radio is next for me. 

The paper edition is out in Australia this week, or you can read a preview here.

I chose New Idea because I already had a relationship with them (here and here), and it's also an audience I don't often reach. It changes the way society sees people living with Ichthyosis, and also the way we see ourselves. I was very firm with how I wanted to be represented, and made several edits.

Last week a friend who lives with Ichthyosis shared another of her beautiful wedding photos on Facebook. She got married in October. I've loved seeing her photos and video, and of course I clicked like. She has only shared a few photos, unlike me who's shared around 865! I want to see more photos - I loved her flowers and her dress and her cute jacket that was embroidered with her new surname! It was all so pretty! Seriously how beautiful is her wedding video?!

Early the next morning, my friend sent me a screen shot of an awful comment she received on the photo - from another woman with Ichthyosis. The comment said "sick to death of seeing this. You were married six months ago. Are we going to have this all year [?]. Jesus, grow up." Then she blocked my friend.

Gobsmacked. My friend's husband sent this woman a message, questioning this hate filled message very politely, telling her what the wedding represents - a dream they'd never thought come true. The woman with Ichthyosis told him my friend isn't dying, she on,us has a skin disorder, FFS. There was swearing and more bitterness. Horrible. It must be tiring being that miserable. My friend laughed it off, resilient as fuck. 

I was so sad for her. 

This behaviour is lateral violence. It's internalised ableism. I've seen it happen a lot between people with similar (or different) disabilities. I've been on the receiving end of it from people,with Ichthyosis. 

It's so important for people with Ichthyosis - like my friend and I - to share these life milestones. And even the mundane. It shows the world that despite low expectations, we can achieve and be loved. It gives hope for future generations living with the condition.

Many people with Ichthyosis go through our lives being told we are undesirable and unlovable. We're also told that if we put our strange, unsightly faces and bodies* out there, especially on social media or in mainstream media, we are attention seekers. We can't love ourselves when so many others don't love us. We are conditioned to hide away, because the media rarely shows people like us in a non sensational, non exploitative way.

And this is why I told my story to New Idea. On my own terms. To show others who feel like they need to hide away, or told to take those photos down, or doubted for being happy with their unique beauty that it's ok to be proud of the way they look, and to celebrate a massive milestone like getting married or having a baby  We are able to do this on our own terms - through social media, and magazines like New Idea, if we choose. We can change the narratives or disability, appearance diversity and Ichthyosis so the world won't get tired or frightened of seeing us, 

Thanks for having me write for you again, New Idea. It's been a great experience.

 

*absolute sarcasm

For advice on what to do when the media asks you to share your story about your disability, facial difference or Ichthyosis, click here. 

Has this blog post made you think or laugh? Why not buy me a drink to show your gratitude? Thanks! 

Support group for Australian and New Zealand women living with Ichthyosis.

 

 

I have set up a private Facebook support group for Australian and New Zealamd women (and people who identify as women) who have Ichthyosis. 

If you fall into this category, you are welcome to join. Women can discuss sensitive topics they might not feel comfortable discussing elsewhere. 

Here is the link to join the group.

I've limited the group to Australian and NZ women living with Ichthyosis for a number of reasons - treatments like creams and tablets that are often only available in Australia and NZ and suggestions of creams in USA/UK/EU/Asia might not be available here; there are many international Ichthyosis support groups; Australia and NZ are geographically isolated; there are already parents and carers groups; and this will be a safe space for women only. 

Thanks! Hope to see you there. 

(If you are not an Australian or Zealand woman living with Ichthyosis - a parent, carer, male, sibling, Ichthyosis charity worker, doctor, nurse, not living in Australia or NZ - there are many other support groups you can join. I've listed them here.)

If 10 year old me could see my life in 2016.

 

If we measure life's worth by social media reactions, which we shouldn't but we do, 10 year old me feels more loved, valued and visible in the last few days of 2016 than I did when that photo was taken in 1992. I snapped a photo of the 24 year old picture in a frame on my parents' very vintage hifi speaker yesterday. I cropped it and uploaded it to Instagram and Facebook, not foreseeing the impact the response would have on me. I didn't plan to think about it so deeply. As I write this, the picture has received more than 200 likes on each platform, and dozens of compliments. If 10 year old me could see those now, I think life would have been a little easier. At least 10 year old me could see there are people out there who think I'm awesome, just from a photo alone. 

10 year old me didn't know that in 2016 I would be married, kicking career goals and very happy with life. I wish I could 3D print that photo of her in the green, white and grey uniform, press her from the paper and take her by the hand and walk her through everything that happened in 2016. Show her she's surrounded by positive, supportive, smart and accomplished people. Reassure her that what sets her apart will be the very thing that she's using for social good - and an income. See her sigh and smile with wonder, telling her "who would have thought it would be this amazing?!"

On social media likes terms, 10 year old me had no idea that her school photo would be as popular as her wedding photos from 2016. She'd have no idea how hard it was to reduce a list of 100 or more loved ones down to an affordable number of 55 guests, and that her favourite singer would sing at the wedding. 10 year old me couldn't even consider the idea she'd be married to a nice man who believes her skin that falls on him and in his pockets is love, not something disgusting to be feared and brushed away. He loves me and all that I leave behind.

 

Of course, 2016 hasn't been all good - there was some really awful times including some more blatant discrimination, betrayal, conflict, difficult decisions, unpleasant situations, inappropriate behaviour and aggression from someone with Ichthyosis, a horrific wisdom tooth removal that's resulted in a formal complaint to the dental board, the death of several friends and constant soreness. I'm even sore today, dammit. All through the hard times, I've had dear friends checking in and helping me through. 

But there were great moments! I got married! Went on a European honeymoon for four weeks. Spoke at an event before Julia Gillard spoke. Wrote for the ABC  And SBS!  Wrote for News Limited! And Daily Life too! Won an award. Won a scholarship to a health and social media conference. Was featured in an art exhibition. Did lots of media. Went on a few podcasts including Osher Gunsberg's podcast. Started my own podcast  Made some great new friends. Had a constant and comfortable level of money in the bank. Left my safe full time job and started a new career - a part time day job. I also write and speak mostly about what it's like to look different. I've been thinking and writing real critically about disability issues that affect not just me but my friends and colleagues. I met a few more friends with Ichthyosis - in Australia and overseas. Continued to speak up about ableist and discriminatory behaviour, and become less apologetic in doing so. Adam and I are talking about buying a house in 2017. 2016 was the year I grew up. I wish 10 year old me was here to experience the joys and sadness and hard work and fun. 

I look at the photo of that little girl. 10 year old me. Unruly hair. Perfect teeth that I had not yet grown into. A beautiful smile. A red, glistening face - the thick white smears of Sorbolene cream must have recently been replaced with the paraffin-based ointment I still use today. Big skin flakes stuck to my jumper (didn't the photographer think to tell me to brush it off?!). 

I had perfect handwriting and a creative mind. I'd sew clothes for my Barbies on my days off school, and I remember at the end of that year, I received a craft award, which was a book about how to make miniatures for a doll house. I read TV Hits magazine, alphabetising all the song lyrics, and I was a huge fan of the Australian hair band Southern Sons, after my very cool babysitter and her boyfriend introduced me to them via Rage videoclips the summer before. That summer, Mum would buy me an extra large sized tshirt, featuring Southern Sons, as suggested by her then twenty something colleague. It came down to my ankles. I have never worn it out of the house. Sometimes I wear it to bed as an adult. It's down to my knees now. I was still at the age of playing with dolls yet wondering when my period would come (it came in August 1994, when I was 12, and that marked the start of me shutting the bathroom door), and listening to the girls in my class talk about the boys they wanted to get with, knowing that would probably never happen to me. 

I was so self conscious. I just wanted to be normal, whatever that is. Normal in a white bread small town was white skin, long hair and a short pleated netball skirt. It was sport on the weekends - actually enjoying sport. It was friendships and parents who were white too. It was church and farming and liking the outdoors. It was splashing in the pool in the summer, enjoying the heat. Normal wasn't me. 

I didn't identify with having a disability in 1992. (That was only recently.) Ichthyosis was just a skin condition, and the girl in my class who had cerebral palsy was disabled, I certainly wasn't!, I thought with defiance. But I wanted to be a dermatologist - until I found out it would take me until 2017 to qualify as a dermatologist, and was told by my then dermatologist that I would probably be mistaken for a patient in my own consult room too many times. Then I wanted to be a writer. 

10 year old me was lonely. I sat on my own most lunchtimes. I read a lot of books. When the girls in my class braided each other's hair, they avoided mine. They wouldn't  sit where I'd been because of fear of contagion - even though I'd been at the school for five years and in that time, no one had caught Ichthyosis. Duh. I preferred to be in hospital because the patients and nurses knew what it was like to be different and sick, and they liked me more there. A year or so before that photo was taken, I told my Mum that didn't want to live anymore, and I got help from a psychiatrist, but I don't remember any of that time of my life.

 

A man (then boy, of course) whom I went to school with a few years after the 10 year old me photo was taken recently told me he was one of the only boys in my class who would hold my hands during dance class in PE. The other boys covered their sweaty hands and sniggered to their friends when they had to dance with me. They might catch something. But not him. He braved my rough, oily red hands. He feels good about being one of the few to actually hold my hand. He said the other boys gave him shit for it. My heart sank for two reasons - thinking back to the time where people were too immature and repulsed to hold my hand, and for my now friend telling me he took a hit for the boys club. Such a great guy for telling me this. 

As Clem a Ford writes in Fight Like A Girl: 

"We have to resist the urge to respond to basic decency by treating it as if it's some kind of enormously magnanimous gesture. It isn't. There shouldn't be anything astonishing about a man who doesn't degrade women, hurt them or treat them as somehow less than him." 

I was actually revolted at this former classmate's admission of decency when he told me, and my revulsion was confirmed when I heard Clem's words. I wish I had the guts to say them to the people I went to school with at the time. Thanks Clem for making me realise that just because someone says they took one for the team, they're not a good guy, they are still contributing to the bullying.  

There are lots of photos of me at various ages scattered around my family home - mostly milestones like school and university graduations and meeting Darren Hayes. In my early years I wouldn't smile for the camera, I'd just screw my face up because I didn't think I was worthy of having my photo taken when my face was different to most people's anyway. There are a few school photos of me with my sparse hair tied back in different coloured scrunchies and ribbons through the 90s. What a relief/faux pas it was when I found mousse that made my hair curly (yet so crunchy it wasn't nice to touch). I don't have many social photos of me in my teenage years - perhaps I was too self conscious and friendless to take any? Maybe it is just because we didn't yet have digital cameras and social media? 

I have seen that photo of 10 year old me countless times. I hadn't really taken notice of it until this week. When I looked closely, I saw a beauty that I hadn't noticed prior. Maybe that was the year I started taking care of my own skin. But I think it's because I see myself now, as a 35 year old woman, in that 10 year old face. A smile, and a twinkle in my eye. Big hair, don't care. There was so much potential for me - but I didn't realise then

Mum always told me to believe in myself and not to worry about what others thought of me. I tried when I was 10. But being proud of myself, and confident, especially when I was made to believe I looked hideous because of how people my age spoke to and shunned me, was seen as being up myself. No one wanted to be that, or liked that. It's so much easier to display that confidence now. No fucks given. 

When I was 10, I needed to meet others with Ichthyosis, like I'm doing now. I needed mentors in my life. I needed to know that life as an adult would be ok. But the few people with Ichthyosis that I met spent their lives looking for cures and that made them really unwell. I knew when I was 10 that I didn't want to be fixed, even though so many said that  I could only succeed if I didn't have red, scaly skin. 

It's 24 years since that photo was taken. I remember the isolation and being told I could do anything as long as I chopped my skin off like it was yesterday. In my 375th argument on the Internet this year, when someone defended and dismissed bullying at my high school  and of course I had something to say, a stranger told me they hope I put my sad school days behind me. Of course I've achieved and found so much happiness and love since then, but I remember the hateful words and the exclusion. 

10 year old me wondered when someone would say I was beautiful or smart or a good writer, instead of calling me "redskin" or dragging their feet because they had to sit with me at lunchtime. I wondered when someone would come to my house on a Saturday to play Sylvaniam Families or My Little Ponies. I wondered when teachers would realise that sitting outside in the heat was just as bad for me as playing sport in the heat, and could I just go to the library and read, please? I wondered for so long when someone would hold my hand, let me touch them, ask me to braid their hair. 

As I began to write this piece in bed this morning, Adam, my husband (my husband!) reached for my hand, sleepy and naked next to me. I brushed it away, briskly. "I'm trying to write", I told him. "I'm trying to love you", he replied, smiling. And then I took his hand and let him kiss mine. 10 year old me would be giggling at the thought of the love she'd have in 2016.

Cheers to 2016, and here's to 2017 - I hope you have a great New Year. Thank you for reading my writing in 2016 - you are so wonderful.

❤️

 

That's 35 year old me doing just what 10 year old me couldn't get away doing - lying on a massive toy shaggy dog in an art gallery a few days ago. I could be myself around a school friend as she took the photo, and that felt good.

Has this blog post helped you or made you think? Please consider buying me a drink. Thank you! 

(I've been reading Lindy West's and Clem Ford's memoirs this holiday. They are such great writers and have made me think and laugh. This post is inspired by them - and has given me thought for writing my own memoir soon. Hold me.) 

Giggling on the Just A Spoonful podcast

 

 

You know when you have a crush on someone and somehow you magic your life so your worlds collide and you do something together? Well that hadn't happened to me until I was asked to be on the Just a Spoonful podcast with Kaitlyn Plyley earlier in the year. I had SUCH a giddy crush on this podcast. I remember listening to all of the previous episodes the week I discovered the podcast. I loved the interviews with chronically ill and disabled guests. And I love the theme song, which is often stuck in my head for hours after listening. But my biggest crush was on Kaitlyn's accent! (I now realise I'm on the verge of being one of those micro-aggressors who can't get past how amazing she sounds - but I swear I see Kaitlyn's big, creative brain too!) And so can you imagine my excitement when I got to talk to her on the podcast for real?!

Listen to the podcast here:

Unlike the miserable eventuation of many of my crushes, Kaitlyn and I became BFFs immediately when we started talking. I KNEW we would get along. She is so nice and funny and smart and accomplished. What I didn't know is she is as big a Savage Garden fan as I am. Friends, you're in for a treat. 

We talk about the awful film Me Before You (I had not watched it yet) and the concept of Cripping up, oppression Olympics, the guilt I feel when I'm not able to work, and how hard it can be to prove ourselves because of our disability. And then there's a whole heap of NOT talking about disability, which I really like. Here's a quote: 

"There's that pressure, you know, because I've been given an opportunity to work, been given a lot of opportunities, [that] I have to perform at 120%. I do most of my writing in bed, because I have to conserve that energy ... My priorities go, my skin and then my day job, because they have to." 

I must warn you - not to put you off, because I hope you'll stick around - this podcast goes a little like this: Hello. Giggle. I GUSH OVER HER ACCENT. SHE GUSHES OVER MY DRESSES. More giggle. Disability talk. Giggle. Pop culture. Giggle giggle. OMG YOU DO LOOK LIKE JUSTIN BIEBER! Giggle giggle giggle. Disability talk. Serious stuff. Giggle. OMFG WHY DIDN'T WE TALK ABOUT SAVAGE GARDEN FOR THE WHOLE EPISODE?! I really mean that. Giggle. Savage Garden song. 

Kaitlyn and I met IRL in Melbourne a few months after recording the podcast. She understands the need to bring a blanket to other people's houses because of likely coldness and soreness. We are yet to start our own Savage Garden Gigglers podcast, but that's a good idea, right?!

 

All the links:

Follow Kaitlyn on Twitter and Facebook. Visit her website. 

Subscribe to Just a Spoomful on the website and iTunes. 

The podcast artwork is by Erin Michelle. And the song is called Sleepless - it is by Anna O. 

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Talking authentic disability representation in media on the Neighbuzz podcast

 

A couple of weeks ago I was interviewed for the Neighbuzz podcast. It was a special bonus episode focused on disability.  Neighbuzz is hosted and produced by Vaya Pashos, who I've been chatting to on Twitter for years. It was so good to finally meet in real life! I love Neighbuzz because it's more than just recapping the show. It's bloody funny, and Vaya and her team often talk about serious current affairs such as consent, victim blaming and of course, diverse casting. It's also really well produced.

I put Vaya and my friend Kate Hood in touch - Kate recently joined the Neighbours cast for a month. Sancia Robinson - who played Elaine, a quadriplegic woman in 2013 - also joined us for the podcast. Sancia currently works as a casting director and I truly think our discussion will influence the way she makes decisions about diverse casting.

Listen to our podcast

I watch Neighbours most days - it's a soap I've been watching for years. And so I was excited to see Kate Hood joining Neighbours. This is a pivotal moment in Australian TV history - Kate is an actually disabled woman playing a disabled character - Maxine Cowper. 

Kate and I met at Quippings in 2014 - she is a wonderful writer, accomplished actor (she used to be on Prisoner), director and producer at Raspberry Ripple Productions, and has a beautiful voice. She narrates a lot of audiobooks. Kate's character Maxine is from the wrong side of the tracks - tough talking, and enmeshed in Paul Robinson's crookery from her first episode. 

 

Her opening scene: "I may be in a wheelchair, but I can still put away a few tinnies."

You're probably aware that talking about disability and media representation is one of the things I love to do. So it was a brilliant opportunity to talk to people who get it - who are directly involved in making their own media and influencing  We joked that four women on a podcast would make it so hard for listeners - a la the commercial radio fable that women can't host their own radio show. 

 

It was also great to chat about Me Before You and the reason we protested online and in front of cinemas  Many non disabled people didn't understand our reasons, and defended the book and film as fiction. A few "friends" actually defriended me because apparently my involvement was OTT. But the truth is, representation matters. The narrative that being disabled means a life is not worth living shapes how disabled people see ourselves, and of course, how disability is perceived in real life. 

Representation matters. Fiction can damage people. A friend who has a disability told me the film impacted them so much they felt worthless, and was made to feel suicidal. They were thankful for us speaking out about the film - our actions helped save them. My friend told me they have no doubt others with spinal cord injuries felt the same watching and reading about Me Before You. 

We all discussed the idea of "cripping up" - when a non disabled actor plays a disabled character - and how it's not acceptable to black up, so why is it ok to crip up? You'll hear that Sancia felt very uncomfortable playing a disabled person, but took the role very seriously. 

I also talked about how disability is the last taboo with jokes in the media. A month ago I watched half of How to Be Single and was disgusted. Rebel Wilson's character joked about dating "midgets and albinos". I wondered when the day will come when actors can opt out of ableist lines and script writers will avoid writing them? Will media makers ever realise that ableism is as bad a racism and homophobia? Perhaps a better question to ask is, when will they even recognise what's ableist, and the impact ableism has on disabled people?

Kate and Sancia bonded straight away. They chatted like old friends. 

The Neighbuzz chat was lots of fun, and very well considered.  I hope helps make people think about the positive impacts of authentic casting. It was so lovely to meet Vaya and Sancia, and to hear what a great experience Neighbours has been for Kate. Thanks for having me Vaya! 

All the links: 

Listen to our episode of Neighbuzz here:

iTunes

Stitcher

Keep up with Neighbuzz on Facebook 

Visit the Neighbuzz website 

Follow Neighbozz on Twitter
Chat to Vaya on Twitter

Follow Sancia on Twitter 

Watch Sancia's play What's the Matter Mary Jane?

Follow Kate on Twitter, Facebook and her website  

Find out more about Raspberry Ripple Productions 

Has this blog post helped you or made you think? Please consider buying me a drink.