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tag:blogger.com,1999:blog-17208721538133571672023-10-01T21:00:09.416+11:00Tune into Radio CarlyTelling my story of what it's like to live with Ichthyosis and a visible difference. Loving life!Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-15789975145400452612017-06-18T07:48:00.002+10:002017-06-18T07:48:32.513+10:00I don't blog here anymore. Visit carlyfindlay.com.au I don't blog here anymore. I write at carlyfindlay.com.au. Yes, I've grown up and bought a dot com (dot au).

 I need to figure out how to redirect traffic from here to there - can anyone help?

 You can still catch me on Facebook, Instagram and Twitter between blogs, and to find out where else I'm writing.

 Thanks! Pop over to carlyfindlay.com.au from now on.Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-63148885134691111602017-02-05T17:39:00.000+11:002017-02-05T23:29:59.312+11:00Inspiration 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.

 <img alt="facebook post from Adam Pearson - 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 still from a video from Adam." id="id_40e0_ecda_9086_f70c" src="https://lh3.googleusercontent.com/-vtqUEnS-0yY/WJbHQd2fwnI/AAAAAAAARLw/3_xcPE7eYVg/%25255BUNSET%25255D.png" style="height: auto; margin: 4px; width: 618px;" title="" tooltip="" />

 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.

 Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-13957873885848028052017-02-03T19:43:00.001+11:002017-02-04T13:22:52.180+11:00Don'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.Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-9809723060876247602017-01-17T07:00:00.000+11:002017-01-17T23:05:45.808+11:00You 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.)

 Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-7327532508480618832017-01-09T16:51:00.001+11:002017-01-09T20:37:10.281+11:00My 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!

Carly Findlayhttp://firstname.lastname@example.com:blogger.com,1999:blog-1720872153813357167.post-88399939562834665372017-01-08T10:01:00.001+11:002017-01-08T10:01:01.449+11:00Support 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.)
Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-63405650927559227972016-12-31T13:52:00.001+11:002017-01-01T17:08:32.654+11:00If 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.)

Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-36898299310727299762016-12-30T07:29:00.005+11:002016-12-30T08:17:23.940+11:00Giggling 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.

Did this post help you, make you laugh or think? Please consider buying me a drink.
Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-68653904850878008782016-12-29T09:42:00.001+11:002016-12-29T09:58:33.497+11:00Talking 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.
 Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-47907548284543526412016-12-27T15:33:00.000+11:002016-12-27T16:24:06.311+11:00Silent Tears exhibition at MAMA Albury This post mentions violence toward women with disability.

 I went to see Silent Tears at MAMA - Murray Art Museum Albury in Albury on the weekend. It was moving and heartfelt and the stories of the women show bravery and endurance. Silent Tears is an exhibition showing photos of women with disability who have survived violence. The photos have been taken by Belinda Mason.

 I am featured in Silent Tears - Belinda asked me because I've been the subject of online abuse as well as regular micro-aggressions about my appearance. There is a transparent large photo which hangs from the ceiling. See it and read about it here There is also a documentary series where participants are featured in every day settings. You can see my photo and read about it here.

 I don't feel worthy when the other brave women are survivors of horrific violent circumstances. I haven't been subject to physical violence but the daily grind of ableism and microaggression is wearing, and the online hate speech is certainly awful.

My friends Anj and Jane (below left) and all the other women photographed: you are amazing.

 Thank you for including me Belinda, congratulations to all the women for speaking out about violence, and thanks to MAMA for hosting it.

Silent Tears project contains images and stories that include depictions and some graphic accounts of violence against women.

Need Help? Are you experiencing sexual assault or domestic and family violence Seeking to support someone who is? Help and assistance can be found. Call this number 1800 737 732 to access counselling delivered by qualified, experienced professionals 24-hours a day, seven days a week, from the National Sexual Assault, Domestic Family Violence Counselling Service. www.1800respect.org.au.

If you are feeling unsafe right NOW, call 000.

 Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-55952632910628532982016-12-23T07:00:00.000+11:002016-12-23T14:23:55.185+11:00One year since Cripping The Mighty
It's a year since #CrippingtheMighty happened. In short, The Mighty, a disability-focused site, publishes content that is damaging to people with disability. A number of disabled writers and activists spoke up on social media, and created a lot of content about the issues, offered advice to writers and editors, and a few of us (now former) writers were thrown out of The Mighty writers group - probably because we were too outspoken for them. I wrote about it here and here - and there are lots of others who did too. You can read a Storify of tweets and articles here.

The best thing to happen was that I met amazing, likeminded people - and I've gone on to write lots of articles this year - and been paid for them!

Despite the commentary around it, and a number of us trying to work with The Mighty, they continue not to pay writers, and continue to produce inspiration porn and divide the disability community. It's concerning to see The Mighty used as as resource to teach people about disability, and to connect people with disability. They are looking at changimg, though. However, I imagine most writers would prefer to be paid for each article rather than through a best performance system, or not at all, with forecasted revenue potentially going to not for profit. Just pay the writers.

In an email last week, Mike Porath, founder and CEO wrote:

 As we complete our second full year of operation, I wanted to give you a brief update on The Mighty, ask for your thoughts on a key initiative, and encourage a few of you to take a larger role in our community.

First, the update: Together with your help we are growing our community and helping so many more people. When we launched The Mighty in 2014, our stories were viewed 2,000 to 3,000 times a day. Now our stories are being viewed 2 million to 3 million times a day, including our videos. If you want insight into our operation, the effect our stories are having on people, how we are growing and where we're going from here, please check out my post from a couple months ago.

Second, a new initiative: to fund our growing operation, we will begin partnering with brands as sponsors and begin experimenting with different ways to drive revenue. Over the coming months, these experiments will only cover a small fraction of the costs to run the site, but they will help us determine the best ways to grow The Mighty into something that helps far more people in many more ways.

As we enter into this new phase, we want to get your thoughts on ways we can contribute a portion of the revenue to the community. Here are just three possible examples: 1. Our plan from the beginning was to contribute a portion of our revenue to nonprofits that are working with The Mighty and our contributors. 2. A performance-based payment model for contributing writers. 3. An operation that helps companies (our future sponsors) hire more people with disabilities and other health conditions.

Again, as we begin to bring in revenue (we've made no revenue up to date), any initiative we fund will be fairly small, but we have a very big vision of what The Mighty can become and expect there will be many ways for us to contribute to the community as we grow. Please take a few minutes to give us your opinions on this matter and others in this survey here.

Third, an opportunity: Have you ever considered working for The Mighty? We are getting about 1,000 submissions a week from contributors, far more than our small team of editors can handle. We're hiring part-time editors in several of our sections. To find these people, we'd like to start with you: the people in our community who know us as both a site and brand, and the conditions we cover. We're thrilled at the idea of having some of you join our Mighty team.
These positions can be remote and have flexible scheduling, but they will also require a great amount of training and eventually, fast editing with thoughtful ways to frame stories. To apply to take an edit test with us, fill out the application form here. We hope you'll consider applying, but we can only bring on a few paid positions right now, so please do not be discouraged if you are not initially selected. If you have any further questions about our hiring process, please reach out to firstname.lastname@example.com. We'd also like to encourage any college students to reach out to that email address if you are looking for an internship. We'd like to reiterate: we are so excited at the thought of you joining our Mighty team and grateful for what you've helped us create so far. We've truly done this together.

Mike Porath
Founder and CEO, The Mighty

The fabulous Alice Wong interviewed a number of us who took part in Cripping the Mighty - all former writers - and here's the result on Disability Visibility Project.

One thing I didn't say in my spiel, but wish I had, is that people who keep writing and sharing The Mighty posts are perpetuating the problem. It is not a site that supports disability rights. It doesn't pay writers. It doesn't respect advice from actually disabled people. It caters to the inspiration porn loving, medical model following, burdened parent. I have lost respect for writers who continue to write for The Mighty knowing the problems, and the feelings of many disabled people.

Since last December, The Mighty has categorised impairments. They have dedicated Facebook pages per impairment, and readers can search the site and view articles on the impairment they choose. I don't understand the divide by categorising impairments. So medical model focused. If you have cerebral palsy, why not learn about autism, or if you're a parent of a child with Down syndrome, why not read how the experiences across disability types can be similar.

It also takes advantage of writers who feel this is the best opportunity they can get. There are SO many more ways to get your voice heard. I've seen many disabled writers published in the mainstream - really making waves. I've been one of them, writing for the ABC and News.com.au this month. It's been a huge reach and a brilliant opportunity.

As I learnt from Cripping the Mighty, and in my other areas of work this year - there are hundreds of actually disabled media makers out there. We've come together to highlight important issues including the impacts of the US Presidential Election, assisted suicide, the murders of disabled people, and of course media representation. We mobilise on social media. And these are the issues The Mighty isn't covering.

There is no reason for our voices not to be centred in the media. Nothing about us without us.
Carly Findlayhttp://firstname.lastname@example.com:blogger.com,1999:blog-1720872153813357167.post-72242949107140896182016-12-20T19:43:00.001+11:002016-12-20T19:43:44.594+11:00Healthcare and disability article for the ABCI'm excited about my second publication on ABC News this week. I was commissioned to interview a few people with disability who navigate the healthcare system. I spoke with an Aboriginal woman, a woman from rural Victtoria and a young man. They were so generous with their stories. Here's the final piece.

Here's a blurb:

"Those of us with disabilities often find a visit to the doctor leaves us feeling like we're forever the teacher, especially if our disability is rare or little understood.

A quick trip to the GP for a cold can become a long appointment where I'm giving a curious doctor an explainer on my disability.

Or there's the flipside, where my disability is forgotten and the doctor fails to realise the impact it has on my general health."

Read more here. (Also, the comments suggest a headline was the only thing read...)

Thanks for having me ABC News! And thanks James, Michelle and Tracy for your time and lived experience.

Have you listened to my podcast yet? Have a laugh by listening to Refreshments Provided.
Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-84122009644209250212016-12-19T17:42:00.001+11:002016-12-19T18:19:59.979+11:00On guard. I'm aware of the need to manage other people's reactions towards me.

The cleaner was due today. Last time they came, they were scared of my face and left.

There is usually a different cleaner each time. I know this now I work from home, and also because of the varying quality of the cleaning.

Part of me wanted to stay home, so I could greet them, smiling in a friendly way, and monitor their reaction.

Most of me wanted not to be home to avoid being on alert, avoid the explaining of why I look the way I do and trying to make a stranger feel comfortable about my appearance.

I do just want to get on with my day - do a good job of the work I'm required to for my day job. But I know I'm aware of the need to manage other people's reactions towards me.

This is tiring.

I acknowledge that of course this doesn't happen all the time, and the majority of interactions are positive.

But when something like the cleaner being afraid of my face and leaving the job happens, or when I'm abused by a taxi driver, or even when I'm surrounded by high pitched children demanding to know what's wrong with me I can be on guard. I notice sniggers and glances from my peripheral vision. I see the gaping mouths and hear the sudden silence as I enter their space.

I jot down the cab numbers before I've put my seatbelt on, and I put a smile on so as to not scare the children.

These are the things I've become accustomed to doing because I look different.

I try to be polite at all times. But I cannot guarantee that I will respond to each microaggression (or outright discrimination) in a chirpy, educative way. But that's often expected of me. Often by people who experience Ichthyosis - as a carer, and sometimes a patient.

"You should have welcomed this opportunity to educate," I read. It's bitterness, they tell me. There's also the idea that I'm not comfortable with my appearance if I see stares and comments and fear as negative experiences. (Wrong.)

There is the peanut gallery of people who look on the bright side. Usually people who have never been judged by their appearance alone. "They probably didn't mean it." "It's natural to be curious." Even the "Maybe you're taking things too personally?"

And then there's always my own high achieving self telling me that the way I respond will shape a stranger's experience of dealing with a disabled person or someone with a facial difference. I might be the person to make them never want to interact with someone like me again. It's a huge responsibility to get it right. Amd I don't want to be seen to be scary and difficult. That angry red woman. Because I'm not.

The cleaner never came today. I will be on guard another day. And I wonder if something came up, or word has got around the agency to avoid the angry red woman who cried discrimation.

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

Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-4944675465794431322016-12-16T17:20:00.001+11:002016-12-17T21:47:36.196+11:00My blog turns 7 today. An article I wrote. Thank you for being a friend.

Hello!

My little blog turns seven today! It's seven years since I started off with this small voice.

Over the years, I've been more courageous to share big opinions - my voice has become much bigger. (Some times I get into arguments with people on the Internet - I work very hard at being diplomatic.)

Here's an opinion that was published today.

I wrote about those awful tag a mate memes, and the impact of ridiculing people's appearances on the Internet. Because that happened to me three years ago next week.

Here's an excerpt:

"Sadly, some people I know have tagged their mates in memes of overweight women. Even when I've told them about the impact these memes have on me and others, they don't get it. They don't understand what it's like to be mocked or excluded because of their appearance.

A first-hand story about how these types of memes affect an actual person is not enough for them to become empathetic and remorseful. They just get defensive. I thought that once they knew about how I've been treated because of appearance, they might stop engaging in this immature, heartless activity. They didn't.

When I speak up, I'm told to move on. It's just friendly chatter. They're good people, just having a laugh. They're not doing any harm.

Except they are. And if they claim to be inclusive and against bullying, they are contradicting their values by sharing these memes for a laugh."

Who would have thought seven years ago I would be published on national news sites? I didn't. Starting a blog has been the best thing for my career. I'm living my writing dream. Thank you to all the editors who have published me. And thanks to the people who hired me to speak too. It's seriously a privilege to be paid to do things I love.

And it's been great for making friends too. I had a little meetup at the art gallery on the weekend. These lovely ladies, and a man, came to hang out and it was so much fun!

I want to do more of these catch ups soon. What do you suggest?

Blogging has given me so much - most of all getting to know myself, become more confident and be proud of living with a disability.

Thanks for reading here (and chatting on Facebook and Twitter for all these years. Thanks for the positive comments, and for telling me when I don't get it right. Your readership, support and friendship means so much. I love this little place of mine on the Internet.

PS - Have you listened to my podcast yet? Listen over here.

And if you want to support me by buying me a drink, click here.
Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-55021679871115865932016-12-11T10:10:00.000+11:002016-12-11T10:11:54.259+11:00Buy a 2017 Walander to support heart and lung transplant patients. Are you looking for a last minute Christmas present, or a just-because-present, or simply need a calendar because you some have one and you're one frantic schedule away from missing an event? (Maybe that last one is just me - I don't have a clock in the house either!)

My BFF Camille has created the Walander - featuring her beautiful dog Wally. Wally is an Instagram star! I met him for tn first time last year and had a cuddle, and Cam snapped a pic. The hits on my Instagram were off the charts!

Wally LOVES to get dressed up. He really does. Here's a video of him pulling out his costumes from a drawer. And so Wally's rocking the model poses from January to December 2017 in a calendar.

One hundred percent of the funds raised from the Walander will go to the Heart and Lung Transplant Trust of Victoria

The Trust helps patients on the transplant waiting list, and people who have received generous organ donations. The Trust provides apartments to post-transplant patients - it's within walking distance of The Alfred. This becomes a place to call home for 3 months while they go through the most traumatic experience of their lives. It also gives a fitness grant to post transplant patients, so they can maintain their fitness while recovering. Other services include welfare funding to patients who require it, and a contact line for anyone who needs to talk. What an amazing service.

Camille received her new lungs in 2013, and is now Vice President of the Trust. And Wally has brought so much joy into Cam's life. Look!

Walanders are $25 plus $5 standard postage, or a little extra for express.

Buy yours here.

Wally won't get out of bed for less than 5 treats a day now. Such a diva.

This is not a sponsored post. I bought my own Walander. You can sign up to the organ donor via this link in Australia. Google the organ donation programs in your country. Don't forget to tell your loved ones your donor wishes.

Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-6087345957594858212016-12-08T07:00:00.000+11:002016-12-08T08:12:16.075+11:00My year of writing - reflections on my birthday

 It's my birthday today! I'm halfway to 70. Can you believe it? I can't. This is middle age. I don't feel my age, I don't feel grown up, and don't think I look it either. What does 35 even feel like anyway?

 Thirty four was a big year. I got married, went overseas, changed jobs - from full time to part time and freelancing - and have been very, very sore. I had my wisdom teeth out, lost friends and had a lot of self doubt. Honestly, I haven't enjoyed every moment of it, but the big moments and achievements definitely made up for the awful times. I made many new wonderful friends and had some great opportunities including being the opening speaker before our former Prime Minister Julia Gillard.

 I thought it would be a fun thing to do a year in review - reflecting on the writing I've done this year. My friend - talented author - Anna Spargo-Ryan did a year in writing (her novel The Paper House was my favourite book this year, and she should be so proud of all of her achievements!), so I've drawn inspiration from her. It's also a great way to collate my articles so I can send off well overdue invoices to my editor. Plus I'm a procrastinator.

 I've included posts I've written for my blog here too. Because although they're not published on a mainstream platform, I'm still proud of them.

 This year I started a Patreon account for readers to support me blogging. I know that there are many people who use my work in their academic research and teaching, and even to get advice on how to live with Ichthyosis. If this has helped you, please consider becoming a Patron of my work. You can give a small amount monthly. Think of it as buying me a drink to say thank you.

 Articles I've written for the media

 In February I wrote about how hard it can be to find a flatmate when you have a facial difference.

 March was the month I got married, and I wrote about appearance diversity and wedding planning for Nu Bride.

 In June, SBS Life asked me to write about their Dateline episode on child growth attenuation. This was honestly the most complex, emotional thing I've written, and I was scared to put my opinion in this article.

 I also wrote about the problems with the film Me Before You, after attending a protest against it. This was for SBS Life as well.

 I also wrote about that film, and the wider topic of media representation for Access 2 Arts in September.

 July saw the mass murder of 19 Japanese disabled people, and I asked why no one was talking about it I wrote this when I was very unwell, and it was published while I was in hospital. It was shared more than 76,000 times.

 Madeline Stuart featured at New York Fashion Week in September, and I interviewed her mum for Ramonaf (and used this in a bigger article on the blog).

 In October there was another murder of disabled people - this time children, and I wrote about the media coverage and social media reaction.

 I wrote about the 11 year old who is making public transport more accessible. This article was for Kidspot.

 On 3 December, for International Day of People with Disability, I wrote for the ABC about navigating the medical system with a rare illness.

 That same weekend, I also wrote about the expectation to wear makeup and the fear around not wearing it.

 Me in the media

 I've also done a lot of media, being invited on podcasts and radio programs, and occasionally being interviewed for articles.

 In January I was featured in The Age. The article was on slacktivism.

 Following this article, I was invited into ABC 774 to discuss inspiration porn.

 A few days before I got married, Clare Bowditch invited me on her show

 I was on a panel talking about disruption at She Leads in Canberra in May and featured in a related article in Women's Agenda.

 Steve Molk asked me to be on the Humans of Twitter podcast.

 That same week I recorded the Aussie Boggers Podcast.

 There was a lot of media around the Me Before You protest and I gave interviews to The ABC World Today and ABC News and was quoted in Sydney Morning Herald.

 I provided a comment on ableist language for Kidspot.

 I chatted with Jenny on the Fully Sick podcast.

 Tara Moss asked me to write a passage in her book!

 I also chatted on the Osher Günsberg podcast in November.

 The best of blogging

 I've been blogging a lot less this year, but my readership has gone up. I've found my niche, but some pieces are just to remember what happened at that moment in time. Thank you for being my audience.

 Some of my favourite, and most read posts of this year are:

 Stop praying for and exploiting disabled children online

 Dinner with a stranger

 An open letter to The Mighty (and from late last year - The problems with The Mighty and suggestions for improvement)

 There are no wins in having it worse. Chronic illness and disability hierarchy.

 #FashionAngel - inspired by the photo shoot from The Age

 My hens crafternoon - so much fun!

 Today is my wedding day

 I didn't want to be a burden on my minimoon

 We must move past awareness raising for Ichthyosis

 Our wedding video

 Me Before You - disability as a tragedy - I sat in the movies under a blanket to live tweet my thoughts from this!

 Meeting Tara Moss and responding to the dick pic

 This is what it feels like when you say "I don't see your disability"

 This is what my disability looks like

 This is what it feels like to be prayed for

 Overwhelm - writing what I live

 Ichthyosis in India and Africa

 Silenced by a person in power

 Ichthyosis and medical shaming

 This is how two types of Ichthyosis look, feel and are treated

 My face scared my cleaner

 I also started a podcast with Jason. It's called Refeeshments Provided and you can listen here.

 Thank you for being a reader, for sharing my work and for telling me I've made you think. It means a lot that you here (or elsewhere) to read my thoughts. As mentioned, if you'd like to buy me a drink, you can do so here.

 Thank you, and happy birthday to me!

Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-36478509704553875762016-12-05T18:13:00.001+11:002016-12-05T20:06:47.100+11:00My face scared my cleaner away today
This is my face up close. It's red, shiny and a bit lopsided because of a dodgy lymph node that flares up because of my inflammation. It's usually very smiley. Sometimes my hair is out of control, and sometimes there's a few bits of wayward skin hanging off my face and hair. This is who I am.

Earlier this year my face scared the post office worker. Today it scared the cleaner. So much so, she ran away without completing the job.

It's exhausting having a face that can scare people. Even more exhausting worrying I'm seeming like a victim as I recall events like these.

I work from home now. Every second Monday a cleaner comes. I usually leave the house to go to the library when they come, but today I needed to stay home until I finished something.

I greeted the cleaner, saying hello. She jumped, visibly shocked at my face. I let that one go.

A few minutes later I went out again to tell her to let me know when she needs to vacuum the room I'm in, and I'll move for her. I spoke before I was in the room. As she turned around to look at me, she jumped again.

I told her "please don't be scared of my face", and said this is just how I look. I returned to the other room.

20 minutes later, I finished the task at hand, and realised I couldn't hear or smell any cleaning being done. I looked through the house. It's not very big. She wasn't here.

She just left. Didn't lock the door. Didn't let me know. She left because she was scared of how I looked.

After a couple of calls and texts, I eventually spoke to the cleaning agency manager - angry and upset. The manager told me the cleaner did not know how to react to my face so she left. She was scared of my face and so she left.

The manager tried to placate me, saying this is a misunderstanding. She said this wasn't cruel or unprofessional, nor is this discriminatory.

I told her that I'm quite familiar with people's reactions towards me, and I don't need a service provider reacting like this in my own home. She apologised and she will come to clean my unit herself.

About 15 minutes after the phone call, the cleaning agency manager came and she was extremely apologetic. And empathetic. She did say it's understandable because the cleaner had not encountered someone like me before, and that it's not often I'm home. I said it is not justifiable, and as someone on the receiving end of curiosity and fear, it's exhausting to deal with stuff like this.

I had specifically chosen this cleaning agency because they gave me a chance to be up front about my skin, and I didn't have to explain it to each cleaner.. I am also really nervous about my skin, so I didn't want to freak a cleaner out about the skin on the floor.

I asked the cleaning agency manager if I can deliver training to her staff, so they might understand the firsthand impact of such ignorance and unprofessionalism. I said that although the cleaning agent has already spoken to this cleaner, it might help if the cleaners learn the impact of this behaviour from a person who's been on the receiving end of it.

As I got in the car to go to library, the cleaner was outside my block of units. She was there to give back my keys, which the cleaning agency manager now had. But why was the cleaner still there? I asked if she was ok, you know, just hanging around. No apology. She just looked away.

There might have been more to the story, as a friend asked on my Facebook today. But cultural background and working visas should not have played into whether someone is too scared to do their job they're getting paid for. Would it be acceptable for a waitress not to serve me because they were scared? Or a doctor not to treat me, because of this cultural perceptions of people with facial differences? No.

This is what I envisage will happen. The cleaner will get a talking to. She will giggle to her friends about seeing me. She won't be rostered on to work with someone "different" again. And her small-mindedness and reluctance to see anyone who looks different as human will continue.

Some people who don't get it will say "it's understandable that people are scared" or "of course they'll be startled if they haven't seen someone like you before..." But they will never say "this must be tiring." There's an expectation to be polite, to educate, to take it because my face is unexpected. But I'm angry. And upset.

These are the microaggressions I face - about my face - on a regular basis. It is not up to me to make someone else comfortable about the way I look.

Here's a simple guide for encountering someone who looks different:

Say hello. Smile at us.

Apologise if you showed you are visibly startled.

If we provide you an explanation like "I was born like this", accept it and get on with what you're doing.

Ask polite questions, only if you feel it will add to your day. Preface them with "I hope you don't mind me asking.."

Don't just leave a job we've hired you for because you're scared of our faces.

Has this blog helped you or made you think? Why don't you "buy me a drink" by contributing to my Patreon? Or better still, hire me to give your company some training in diversity. Thanks!
Carly Findlayhttp://firstname.lastname@example.com:blogger.com,1999:blog-1720872153813357167.post-88530451751560396852016-12-05T07:13:00.001+11:002016-12-05T07:32:51.190+11:00Two pieces I've written for the media on the weekend - ABC and KidspotLast week was huge. Busy, so busy. Between day job and freelancing, I wrote seven articles for the media. And here are two of them.

I was invited to write for the ABC (our national public news service) which I was so excited and proud to do. This is the first in a series about disability and health.

The article is about navigating the Australian healthcare system with a disability, and provides some tips to doctors.

"My pointers for health professionals:

Listen to us. You can learn as much (maybe more) from our lived experience as you can from a textbook.

Talk to us about our whole lives. It can be uplifting for a doctor to be excited about what's happening for us, away from our conditions.

Don't show too much excitement at treating a rare patient for the first time.Sometimes that feels like you've won a prize.

Let us help others who may be struggling with similar conditions. Invite us to speak at medical events or put us in touch with families.

Mind your language, especially if you're a doctor who writes for publication or uses social media. Terms like "healthcare burden" are really damaging. Also I don't "suffer from" ichthyosis, I "live with" it.

Take a step back to reflect on how far your patients have come, because of the treatment and empathy you've shown. Many of us we owe our lives to you. Thank you."

Read the article here, and contribute to the discussion here.

The other article was for Kidspot. It's my response to a Mamamia article that I felt was a shallow whine. The writer couldn't find her makeup to wear to work, and so had to hide. I address the beauty privilege of the people who are afraid to go makeup free, and the expectation to wear makeup. I make no apologies for my views on this.

"Minutes before I read Jessie's article, I'd watched a harrowing piece on Lateline that told the story of an intellectually disabled woman who had been sexually abused by 10 people through her life.

Later that day, as people were telling me how judgemental I was for my reaction to Jessie's article, I found out a newborn baby in Bangladesh was killed by village men because it had Ichthyosis - the same rare severe skin condition as me. They were scared of its appearance and thought it was cursed. It was no wonder I thought Jessie's worries about not having makeup to wear to work was shallow.

I've found the people who are applauded for going makeup free (like Alicia Keys earlier this year ), or feel afraid to go out in public are the people, or participate in no makeup challenges (radio host Kristie Mercer did a year ago) almost always meet conventional beauty standards. They've got a beauty privilege."

While I don't believe people with facial differences and disfigurements should be teaching lessons for those like the Mamamia writer, I do hope she and others take something away from my perspective.

Read the article here, and chat about it here.

I hope you enjoy these reads as much as I enjoyed writing them.

Have you listened to my podcast yet? Tune in to Radio Carly by listening to Refreshments Provided.
Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-61233149521305720742016-11-28T07:00:00.000+11:002016-11-30T15:52:44.091+11:00My chat on The Osher Günsberg Podcast

 (Image from Osher Gunsberg's Instagram)

 A little over a month ago, I was interviewed by Osher Günsberg for his podcast. He's the host of The Bachelor. I love his podcast - he's podcast royalty to me, so this day was A Big Deal. In person, he's very funny, very welcoming and a good listener.

 I turned up at his hotel feeling really awful. Sore, a bit shaky, and as I told him, if it wasn't for how long this interview took to set up, I would have called in sick. He immediately saw I was cold and offered me a blankie.

 He is a pro interviewer, making me feel at ease from the start and asking really tough questions. There were a few minutes where I was quite uncomfortable when he probed me about my relationship with social media. I'd never been asked to think about it in that way. It was good to think about this stuff, and reflect on how I deal with people who are difficult to deal with on social media.

 Of course I talked a lot about appearance diversity and the importance of media representation, which I think he really got. I said to him that I really admire how he has taken control of his mental health story rather than the media telling it for him, and that is what I aim to do, too.

 You can listen to our chat on iTunes or via the stream from his website.

 I watched Osher (Andrew) Gunsberg on Channel V from when I was a teen. And a little of Australian Idol. Now he hosts The Bachelor, which I don't watch (apart from three episodes). And then when he released his podcast three years ago, I started listening to him again. I've listened to most episodes from the start and often tell him what I think on Twitter. His guests always give me something to think about, even when I'm not into what they do or agree with their views. And he gives a lot of himself on the podcast too. As we discussed after the recording, I often wonder how he is doing week to week, because he's so open about his mental health.

 At the end of our chat, I said I was feeling a little better, he said it was the magic hotel blankie.

 I pitched myself to him earlier this year. It took ten months and several emails to get to our chat for the podcast! The moral of all this is, if you like what someone is doing and want to collaborate with them, just ask. Doesn't matter if they're a media superstar, or if you've grown up watching them on tv. If you like what they do and want to work with them in some way, tell them their work means something and ask if you can be involved. They might say yes!

 We also had a little chat for my podcast - listen to that here.

 Thanks for having me, Osher!

 Carly Findlayhttp://firstname.lastname@example.com:blogger.com,1999:blog-1720872153813357167.post-79589939398352523602016-11-27T10:02:00.001+11:002016-11-27T10:02:19.019+11:00Meet me for a gallery wander and a drink!

I've been wanting to meet more of my blog readers for a while. You are so lovely, thoughtful and supportive, and I appreciate the rich discussions you have on my blog, Facebook and Instagram. It's my birthday in December, there have been big milestones on my socials, and my blog turns 7 too, so what better reason to celebrate?! I asked Facebook if you wanted to meet up for a drink, many of you said yes and so I'm making this happen.

You're invited to the National Gallery of Victoria (NGV) to see the Viktor and Rolf art and fashion exhibition and then have a drink with me. You don't have to have an alcoholic drink - a something fizzy or a cup of tea is fine by me! I hope you will form some IRL friendships amongst yourselves too.

Date: Saturday 10 December

Time: 1.15 pm for a 1.30pm start. We will finish at 3.30 pm

Where: National Gallery of Victoria, 180 St Kilda Road Melbourne. Meet in the NGV foyer for exhibition, and then we go for a drink. And probably a cake because I love cake.

What will we see: Viktor and Rolf exhibition and then a drink at one of the dining places in the NGV.

The exhibition is $18 or $15 concession. Drinks and cake at your own cost.

RSVP on Facebook (or email if you don't have Facebook).

I can't wait to meet you!

Information about the exhibition and gallery is below.

Exhibition details:

"The spectacular and avant-garde creations of Dutch fashion designers Viktor & Rolf are on display in Australia for the first time in an exhibition organised by the National Gallery of Victoria in close collaboration with the designers.

Viktor&Rolf: Fashion Artists explores Viktor & Rolf's radical conception of 'wearable art'. Since forming their creative partnership in 1992, Viktor Horsting and Rolf Snoeren have gained critical acclaim for their cerebral and witty approach to couture. The exhibition, which coincides with the luxury fashion label's twenty-fifth anniversary in 2017, explores the elements that make Viktor & Rolf designs unique in the contemporary fashion world."

More information about the exhibition

Dining and drink locations in the NGV

Getting to the NGV:

PUBLIC TRANSPORT

TramsSwanston Street/St Kilda Road trams (1, 3, 5, 6, 8, 16, 64, 67, 72) travel past NGV International. Alight at the Arts Precinct stop.

TrainsAlight at Flinders Street Station and walk across the bridge past the Victorian Arts Centre.

BY CAR

Parking is available in the Victorian Arts Centre car park located beneath NGV International. Enter from Sturt Street, Southbank, accessed from St Kilda Road/Southbank Boulevard and Alexandra Avenue/City Road.

TAXIS

A taxi rank is located across the road from Federation Square outside Flinders Street Station.

Accessibility

Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-38122502855867580502016-11-24T07:00:00.000+11:002016-11-24T07:00:03.076+11:00This is how two different types of Ichthyosis look, feel and are treated.

I got to hang out with Kyri just before I went overseas. We were in Sydney for an award ceremony . It was so much fun, and we realised how much we have in common. We could not stop talking.

Kyri and I both have Ichthyosis - but different types. It seemed that our commonalities were more social than medical, though. We thought it would be fun to do a comparison blog post - to show how vastly different two types of Ichthyosis are, and also to show that one treatment does not work for all. Enjoy!

Kyri has Lamellar Ichthyosis.

I have Netherton's Syndrome.

Her skin is white.

My skin is red.

Her skin is more resilient than mine. She tells me "my feet are very thick and tough and I can walk barefoot easily, but my skin can be fragile elsewhere."

My skin is fragile, especially on the bottoms of my legs. It's susceptible to infection.

Her ichthyosis is most obvious on her back and torso.

My ichthyosis is most obvious on my face - but most painful on my legs and arms.

I use medically prescribed paraffin to moisturise, all over my body twice a day, and more on my face as needed.

Kyri uses Lush Dream Cream on her body and Lush Celestial Cream on her face, and lots of lip balm because her lips crack.

Her body has a big skin shed regularly and this makes her feel better. "My skin sheds constantly, and I have four big sheds a year as the seasons change which make me feel tired and a bit cranky temporarily then better after.

When my body has a big peel (usually about once every 18 months, but now more frequently), it's so painful.

Kyri takes accutane which is really helping her. She says accutane is wonderful because it makes life a lot less painful. She says "Accutane reduces the thickness of the scales a lot and stops the skin drying out so quickly, but makes my skin much more fragile (grazes become cuts) and susceptible to sunburn."

I'm not on any regular drugs. I take antibiotics and painkillers occasionally.

We both feel pain.

I am susceptible to infections.

Kyri used to get infections more often than she does now, again accutane - pre accutane my skin would split open along the scale lines regularly.

She doesn't feel the cold as much as me.

Kyri's feet soles are thick with skin.

My feet aren't as thick with skin.

Kyri has very long, thick hair on her head. She also has body hair.

Mine doesn't grow long, is thin and slow at growing. I have no body hair.

My scalp has obvious scales.

Kyri's scalp doesn't have many scales. She told me "my scales in my scalp were much more common pre-accutane, by the way. I'd shed everywhere a lot more, too."

She told me she doesn't shower frequently, because water makes her skin too sore. "My skin dries out and shrinks together causing splits, and it's also much much more itchy for about 24 hours", she says.

Meanwhile, in the time we spent together (3.30 pm Wednesday -

12.30 pm Thursday, I'd had two showers. My skin body would feel so uncomfortable without a shower.

Kyri woke up with her face looking like it did before she went to sleep.

I woke up with my face scaly and unable to move it.

Kyri'a hair is so long and silky. "My hair also grows very fast. I have less body hair than most women, but I have more than you", Kyri says.

My hair is short, and breaks off. It doesn't grow much. I have almost no body hair.

I find it it more comfortable to wear tights and long sleeves every day. This keeps me warm and protected from the elements and scratches.

Kyri can't cover up as much as me or she would overheat. She is fine wearing short sleeves.

We both get tired easily - Kyri probably more so than me.

Kyri sweats a little.

I don't sweat.

I don't have eyelashes and only sparse eyebrows.

Kyri has both eyelashes and eyebrows! So envious!

We are both shorter than average.

We have both felt self conscious about our skin and have covered up to avoid embarrassment. We have become less self conscious as we've aged.

We are both very outgoing, and we talk and laugh a lot. We both love fashion and taking selfies.

Our treatments vary. What suits me doesn't work for Kyri. When you suggest a product that you love, don't assume it will work for everyone with ichthyosis. See my medical shaming post for more on that.

We don't look the same but we both have Ichthyosis.

Has this blog post helped you or made you think? Please consider buying me a drink to show your appreciation. Thanks for reading!

Have you listened to my podcast yet? Listen to Refreshments Provided here.
Carly Findlayhttp://firstname.lastname@example.com:blogger.com,1999:blog-1720872153813357167.post-14074528915538789222016-11-21T07:00:00.000+11:002016-11-21T09:12:35.999+11:00Seven books to help kids with Ichthyosis (and help kids learn about Ichthyosis).

 Last week, a mum in one of the Ichthyosis groups I belong to asked about books to teach kids about Ichthyosis (and visible difference). The thread was soon filled with suggestions - and I asked if I could collate them and others I've found useful into one blog post. They said yes, of course. It's a great community.

 I've put together this guide to books suitable for young children, older children and parents, and also some school resources for parents and teachers. They are relevant for kids and adults with all sorts of visible differences too. Among them, three of them have been written by parents or grandparents of children with Ichthyosis, and four are by Australian authors. Perfect! I've read them all!

 If you are parents of children with or without visible differences, I'd love it if you could take some time to read this, to help teach your kids about what it's like to look different. Reading just one of these books to them might just make the difference to a little one who is excluded because of the way they look.

 I hope you find these useful.

 (There are no affiliate links here, and ice tried to source Australian retailers to support local. A quick Google of each will take you to international retailers.)

 Books for younger kids:

 Maddy and Ma - Barbara Jarvis

 Maddy and Ma, by Perth-based Barbara Jarvis, is based on a true story - the bond between a little girl and her brother (who both have Ichthyosis) and her grandmother.

 Barbara told me:

 "Maddy and Toby have learnt there are certain things they can't do because of their skin condition but their family have always focussed on what they can do rather than what they can't do. I think it's so important that we instil in our children a sense of self-worth and a positive approach to life, whatever their situation.

 Maddy and Toby have grown up used to regular visits to the "skin doctors" and daily "creaming" to ease their skin's dryness and itchiness because they "have a skin condition". I once saw a TV documentary on dolphins and learnt about the rare pink dolphin. It struck me that Maddy is like that rare and very special pink dolphin. She loved the analogy."

 Buy Maddy and Ma here. (Proceeds go to the Perth Children's Hospital Foundation.)

 True Blue Hand - Ainsley Kyder-Gould

 Written by my friend Ainsley Kyder-Gould, whose young daughter has Ichthyosis, True Blue Hand helps to start a conversation about appearance diversity.

 Ainsley wrote about the book on my blog earlier this year.

 Ainsley and her beautiful family live in Melbourne and I love catching up with them.

 The website's blurb:

 "True Blue Hand is a sweet tale of a little girl who happened to be born with a unique blue hand. Through a children's conversation at the park the story promotes a positive example of how to be curiously kind when dealing with uniqueness."

 Download the free eBook here.

 Elmer - David McKee

 I was recommended Elmer by Random House, who provided books for the kids at the Australian Ichthyosis Meet in 2015. I used some of the crowd funding to ensure all the little ones had this book. Some mums have told me the book has really helped their kids.

 From the Elmer website:

 "The stories are suitable for early exploration of the themes and issues relating to the concept of diversity, as Elmer discovers that when he tries to change his appearance in order to 'blend in' with the other elephants, they no longer recognise him, or accept him as one of their own. This makes Elmer sad, and he experiences how it feels to be treated like an outcast, after being ostracised by his old friends. It's only when it begins to rain, and the grey paint that Elmer has covered himself with starts to disappear, that Elmer's 'true colours' are revealed, much to the surprise and delight of his friends, who preferred his multicoloured and fun loving persona. Following their happy reunion, the elephants reassure Elmer that they love him because of his differences, and not in spite of them, and they celebrate by painting themselves in multi-coloured paint, in recognition of Elmer's unique appearance and personality."

 Buy Elmer here.

 Books for older kids

 Ugly - Robert Hoge

 Ugly, by Robert Hoge (from Brisbane), is an adaptation of his 2013 memoir - especially for young readers. I did an interview with Robert here.

 From Booktopia:

 "Robert Hoge was born with a tumour in the middle of his face, and legs that weren't much use. There wasn't another baby like him in the whole of Australia, let alone Brisbane. But the rest of his life wasn't so unusual: he had a mum and a dad, brothers and sisters, friends at school and in his street. He had childhood scrapes and days at the beach; fights with his family and trouble with his teachers.

 He had doctors, too: lots of doctors who, when he was still very young, removed that tumour from his face and operated on his legs, then stitched him back together. He still looked different, though. He still looked ... ugly.

 Ugly is the true story of how an extraordinary boy grew up to have an ordinary life, and how that became his greatest achievement of all."

 Buy Ugly here.

 Wonder - RJ Palacio

 Wonder is written by RJ Palacio and I've devoured it in a day.

 Wonder is a fictional children's book about August (Auggie) Pullman, a young boy born with a facial difference. He's got a genetic condition which affects his facial structure and his hearing. RJ Palacio was inspired to write this book after an encounter she had with her sons and a little girl with a visible difference. As a reader with a visible difference, I will say that it's very well researched. It could well be an account from an actual person.

 On the first page, Auggie says:

 "I won't describe what I look like. Whatever you're thinking is probably worse."

 We never know what Auggie looks like but we get an idea from how he's treated.

 Wonder documents his first year in mainstream school - the challenges of making new friends and fitting in. The descriptions of being a primary school student who looks different brought back many memories for me - it's interesting reading it from a young character's perspective when I've experienced similar. Auggie is teased, excluded (some of the other students invented a game called The Plague, where they believe if they touch Auggie they'll catch something), and physically bullied. He has a few genuine close friends but it takes a while to feel accepted.

 My review is here.

 This has been one one of my favourite books of all time. Again, I gave all of the older children and adults with Ichthyosis a copy at last year's meet. One of the tweens who attended told me she treasures the book.

 Buy Wonder here.

 Ride High Pineapple - Jenny Woolsey

 A blog reader turned friend wrote to me to tell me she has penned a booked called Ride High Pineapple. Jenny Woolsey, also from Queensland, has Crouzon syndrome, and her daughter does too - so she has firsthand knowledge of what it's like to live with a visible difference.

 It's the story of Issy, who has a facial difference, getting bullied and then developing a strong sense of resilience through finding a hobby and having an adult mentor to show Issy her worth . It's a great book for young teens.

 I enjoyed this book and wish I had it when I was a teen.

 Buy Ride High Pineapple here.

 Books for parents and teachers

 A Different Beautiful - Courtney Weatlake

 Written by Courtney Westlake mum of Brenna, who has Ichthyosis, A Different Beautiful is a journey of raising a child with Ichthyosis. I found it to focus on religion more than Ichthyosis, but it has some good messages about how to talk to children about visible difference.

 This passage was my favourite of the book.

 "More times than I can count, I have been thrilled when a family has approached us who has recognized us from social media, wanting to say hello… only to be dismayed when that family's children stand back and furrow their brows at Brenna's appearance. It is clear that although the mother has apparently enjoyed reading about our daughter and seeing our family's photos online, she never took the time to share with her children. Often mothers will share with me how Brenna's story has helped changed their perspective regarding special-needs parenting and differences, but then, it is obvious by the confused reactions of their kids that they haven't yet thought to pass those lessons on to their children. If we allow stories and experiences to inspire us for a moment, or even to begin changing our hearts, but we don't take the time to show our children and teach our children about these new perspectives, we are missing the point. If it starts and stops with us, we will never see real and lasting change in the hearts of those around us and in the way our children see themselves and treat others."

 These resources I've collared are so needed because, as parents tell me, their children with Ichthyosis are still being teased and excluded at school. It might well be because parents aren't talking to their kids about appearance diversity.

 Buy A Different Beautiful here.

 School resources

 The Ichthyosis support group in the UK has an excellent pre-school and primary school resource - for teachers and students. Download that here. The Ichthyosis Support Group also has a story booklet that you can get here.

 Changing Faces school resources features information for teachers and students at all stages of the education system. View those resources here.

 It also features a kit on teaching Wonder.

 Of course, I have also written a lot of information about coping with Ichthyosis on this blog - including:

a letter to little me

dear parents of kids with rare diseases, and

how to prepare children for meeting someone with a visible difference.

 Are there any more resources you recommend?

 Has this post helped you in some way? Perhaps you'd like to buy me a drink for my efforts in writing this blog.

Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-65896149560795104752016-11-14T07:00:00.000+11:002016-11-14T12:13:31.248+11:00Ichthyosis and medical shaming.

 I've seen body shaming, food shaming and now medical shaming - where people are made to feel guilty or fearful for their medical treatment choices. It is also where people are recommended non prescribed treatments from the unqualified. It fits into the category of unsolicited advice, doesn't it? The most amusing is when people tell me petroleum based products will kill me - while they're smoking a cigarette.

 I use a mix of paraffin - which are petroleum products. I try to avoid harsh chemicals like sodium laurel sulphate where I can - not because of poison but because they feel better on my skin and hair. And occasionally I have bleach baths. That's right. Bleach baths. The bleach is very diluted - half a cup to a full bath. These baths help with infection. And people are aghast. Sales people are pitching their bleach-alternatives. What a moneymaker.

 A few years ago, I was washing my lunch dishes in the tearoom at work. A colleague I've known for years was staring at me and I asked them what was wrong. They told me that she cannot bear the thought of me using petroleum products, and they wished that I didn't have to use them. I thanked them for their concern, explaining that I have tried a range of medically certified and natural based products and paraffin works the best for me. They went on, saying there must be something else. I explained to them that without the level of moisture paraffin provides, my skin would be very sore - cracked and prone to infections and my movement would be restricted. I later heard she couldn't bear to touch things after I had. We've not spoken much since.

 Rosalind Robertson writes about the pesky, unqualified people who tell us to stop taking our prescribed meds. She gives some great advice: "If the person telling you to stop them isn't your doctor, tell them to fuck off." I've been too polite all these years.

 Medical shaming feels harder when it come from within your own community. And it concerns me when much of this medical shaming comes from people relatively new to Ichthyosis. Newish parents. New spouses, hoping to cure their partner, because love. Many have no scientific knowledge or qualifications - jumping on science cosmetic and sales jargon, making unfounded claims about products' success.

 A year ago, I came into contact with a woman spruiking some 'natural skincare products over medically prescribed ones. She stated that the products for treating Ichthyosis have not been formulated for a market yet. She claimed that petroleum was dirty, and banned in some countries. She also claimed it was cancer causing. I told her she was putting guilt and fear into the patients and parents who choose to use petroleum based products.

 I was also contacted by a woman who told new parents their babies' Ichthyosis was caused by "unclean" Europeans who ate dirty meat and were involved in the sex industry in the 1500s-1700s. Talk about fear mongering
 .
 Recently I was accosted by a sales woman, "accidentally" trying to sell me an expensive bath product (an actual bath) when I said I've been so unwell with skin pain. She subtly left a link to the product on my Facebook status. I told her while I appreciate she cares, I felt she was being opportunistic. We aren't friends anymore.

 There's nothing like opportunistic pyramid sellers providing false hope to people with skin conditions by spruiking their "miracle cures".

 And these people doing the medical shaming aren't medically qualified. They might have been to The Beauty School, or a pyramid selling course. They might even dabble in making herbal creams for their partner's skin. But they haven't done 18 years at university to become a dermatologist. And so few of them actually live with the condition. Sadly, they're pitching their products by making people (mostly parents) feel bad about using prescribed products - scaring them with unfounded scientific claims. And laughably, they suggest products that cost thousands of dollars above basic treatments for underprivileged families.

 I trust my dermatologists with my life. I've asked them several times what the long term impacts of using paraffin is. They told me it's a very low risk of getting sick from it. I've been using this ointment since I was about 10 - so 24 years - and it works fine. It's the best moisturiser I have. It saves my life.

 I will never take an unknown trestment from an unknown person. Here's why.

 About 10 years ago, a pharmacist - who I trust - recommended me a treatment for sore ears after a flight. It was an antihistamine. I hadn't used it before but I heard it helped. My skin peeled off my hands and feet. I couldn't walk. I couldn't touch things or use my hands. I was off work for a week. I cannot risk a reaction like this again. If this is the reaction I get from a tested, regulated product from a qualified specialist, I shudder to think what might happen from an untested, unregulated one.

 Consider these things before you medical shame:

There are many forms and severities of ichthyosis.

Treatment types and treatment success varies between patients. A single product might work wonders for me, but make my friend with Ichthyosis very unwell.

No one knows their body and treatment like the patient.

With grief comes desperation. Some parents are so desperate to find treatment for their children that advice like I've mentioned scares them into thinking they aren't doing a good enough job using prescribed products.

Many of these recommended products are unaffordable, not covered on pharmaceutical or medical assistance schemes. (A couple of parents told me they can't afford the alternative treatments due to this.)

Please don't think that patients, especially adults, haven't tried many different treatments already, and aren't happy with the one they're using.

Just because skin "looks good" with a certain treatment doesn't mean it feels good. Ichthyosis is not solely a cosmetic condition.

While natural products might work well for some patients, they might not work well for others. It's fine to use natural products - but understand they might not work for everyone. Just as prescribed medical products might not work for everyone.

Some of the products being suggested haven't even been formulated for market yet.

Just like I don't want to be told that my food is 'dirty', I don't want to be told by someone other than a doctor (and a specialist at that) that the medical products I use are harming me.

 Please consider the impact of providing "research" and "facts" about alternative treatment products, especially when the products we are using are keeping us alive. People tell me petroleum based ointments will kill me, but they don't consider that me not using them will do more damage while I'm alive. The risk of me dying through any means - including cancer - is low.

 Just as you ask me to respect your religion, please respect my medical choices. This sort of advice, fear mongering and guilting is not compassionate. It is divisive and dangerous. It's bullying. I worry about the impact it will have on new parents looking for information. I won't tolerate medical shaming from a well meaning, yet unqualified and opportunistic stranger.

 (Image description: flowers, herbs and pills. Text: 'Medicine shaming, plus my blog link.)

 Did you like this post? Did it help you or make you think? Please consider buying me a drink!
 <form action="https://www.paypal.com/cgi-bin/webscr" method="post" target="_top"> <input name="cmd" type="hidden" value="_s-xclick" /><input name="hosted_button_id" type="hidden" value="86L6P837GPRR8" /><input alt="PayPal – The safer, easier way to pay online!" border="0" name="submit" src="https://www.paypalobjects.com/en_AU/i/btn/btn_donateCC_LG.gif" type="image" /></form> Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-1435863421544850912016-11-07T07:00:00.001+11:002016-11-07T07:00:02.898+11:00Offer Your Seat - the badge commuters wear to show they are willing to give up their seat on public transport.
 <img alt="Image: a collage photo. On the left is a woman wearing pink jacket, denim skirt and striped top, red face and curly hair, with an 11 year old boy, wearing red white and navy jacket and glasses. They are smiling, stranding outside Flinders St Station Melbourne. There are a few people in the background. The boy is holding a tray of badges. On the right is a closeup of the badges. They are round and blue with the text 'Need a seat? Ask me!'." border="0" height="320" src="https://1.bp.blogspot.com/-jRGm21N_3IU/WB79NFooXpI/AAAAAAAARA0/myo9JjyB368T8ZuwPPvkiyhzVj5t3D9tgCLcB/s320/Anirudh.jpg" title="" width="320" />

 On Saturday morning, I met with 11 year old Anirudh Kathirvel for an interview. He hands out badges to commuters, for them to say they're willing to give up their train or tram seat to pregnant, elderly and disabled commuters. He's changing the world.

 This initiative will make such a difference to people like me - I often ask for a seat on the train, and am sometimes ignored and occasionally refused. I am always polite - thanking them before and after they give me their seat, but sometimes it can be a hassle telling people why I need one. I had to meet Anirudh to chat with him, and so I arranged it with his Dad, Prit.

 I did an interview with Anirudh which you can listen to here.

 After reading an article about a man in London who made badges for disabled commuters to signal that they need a seat, Arnirudh wanted to do similar. Only, he placed the onus on people who are able and willing to give up their seats. I love this!

 With his birthday money, Anirudh made hundreds of badges and started the Show You Care - Offer Your Seat initiative.

 He stands outside train stations handing out badges, talking to them about what they're for. He and his Dad also walk through each train carriage handing out badges.

 When I met with him on the weekend, I did a quiet cheer when a woman recognised him from a radio interview, took a badge and then returned with her friend to get a badge and chat too. I asked them if I could take their photos for this post, and they obliged.

 He's had requests for badges from around Australia, and even one in the UK.

 In 2015, Arnirudh won Channel 10's Great Australian Spelling Bee.

 He said he wants to use his fame for good. A quietly spoken boy, his eyes light up where he tells me about the success the badges have had. He said one woman told him she was hesitant about revealing her invisible disability on public transport, and how these badges have taken that pressure off her to disclose.

 I asked him whether he thinks people who don't give up their seats to those who need them. Ever the optimist, he said he doesn't think everyone is rude, but he thinks with people's heads are often buried on their phones or books and they just don't notice.

 Arnirudh already knows what he wants to do when he finishes school. "Study medicine - particularly neurology", he tells me. But he doesn't want to be a practicing doctor, rather, he wants to research how the brain works.

 He's already stepping foot into university - attending regular public lectures at Melbourne University. He's excited to attend an upcoming lecture on disability - debating whether disabled people need to be accommodated or cured. I didn't ask him his side on the debate, but I'd say that the Show You Care badges suggest he wants disabled people to be accommodated.

 He has a strong focus on social good - and it's clear from the Show You Care badge initiative he knows that a small thing can make a big difference.

 As Anirudh stood at Flinders Street Station offering badges, more people politely refused than stopped to chat to him. I asked his Dad, Prit, about whether the rejection gets him down.

 "It does, but it's a big lesson for him, and for me too", he told me. We talked about how these exchanges are lessons in resilience and patience. Prit also tells me that this is a reason he wants to get others on board to help - from other commuters being willing to hand out badges, to Public Transport Victoria and Metro to create and allow signage in trains, trams and train stations about the initiative. Anirudh isn't selling a paid product, and he really wants to get the message across with posters and a team of people.

 The interview with Anirudh was so uplifting. I came away so happy we talked. As he said in the interview, he wants to "spread a helping culture" - and he's doing a great job at that, isn't he?

 How can you help?

 Visit Facebook to grab a badge or offer some sponsorship.

 Email him to ask for a badge: offeryourseatandshowyoucare (at) gmail dot com
 Listen to the interview.
 Share this post!

 Carly Findlayhttp://email@example.com:blogger.com,1999:blog-1720872153813357167.post-67010094170895387172016-11-02T07:00:00.000+11:002016-11-02T07:00:10.533+11:00The death of 11 year old Bethany - bullied because of her appearance
 Content warning this post contains details of bullying and suicide. Crisis line details are at the bottom of this post.

 Bethany Thompson, an 11 year old girl from Ohio killed herself because bullies became too much for her. I read the news report and couldn't hold back the tears.

 They bullied her because of her appearance - a crooked smile that was caused by the cancer treatment she had when she was three, and her curly hair.

 On her last day of school, she and her friends wanted to put up posters for an anti bullying campaign. The posters read "buddies, not bullies", but the school wouldn't let them.

 She told her best friend she couldn't take being bullied anymore, and killed herself on 19 October.

 It breaks my heart to read this.

 Look at her. A beautiful girl, hoping to change the way students treated their peers - hoping to change the world, and she was denied that empowerment. A girl who received life saving treatment as a toddler, which should never have affected how others perceived and treated her. Now she's gone, far, far too young.

 (Photo from Columbus Dispatch)

 Schools need to take this behaviour more seriously - to listen when kids report bullying, and to let kids lead anti bullying campaigns.

 Parents (and peers) need to show kids what bullying can lead to, and step in to say that's not ok. They need to take responsibility and action for the way their children treat others. (Alison left a great comment on my Facebook post about this.) There was a great page in Courtney Westlake's book how parents are responding well to her blog about Brenna who has Ichthyosis, but this acceptance and awareness isn't being passed down to their kids through discussions about looking different. These discussions need to happen. - they need to trickle down to children.

 I also think medical support groups need to provide children and adults with tools to build resilience and assertiveness, just as much as they provide medical advice. Perhaps a buddy system - pairing up children and adults with facial differences, could offer hope and peer support. I know that would have helped me.

 Most of all, emotional intelligence - encompassing diversity, compassion and empathy needs to be taught as a standalone subject in schools. Kids need to see that Bethany and those of us who look different are worth getting to know, and that they need not fear or ridicule difference. I really love this resource - especially this:

 "Strategy: Nobody should exclude another student from sitting next to him or her and/or from playing with him or her.

 Why: It will hurt the feelings of that student. You have an opportunity to make a new friend." It's great to see the onus of stopping bullying being placed on the bullies, rather than those being bullied."

 This little girl was loved by her family and a group of friends but that wasn't enough for her to know she was worthy.

 I wish some of us adults with facial differences could have known Bethany and taken her under our wings and said "it gets better". That she could be her own hero.

 This was me age nine. I wanted to die because of the way children bullied and excluded me because of my skin. Friends tell me they were bullied to the point of wanting to end their lives because of their visible differences when they were children too. Years later, it's still happening. It has to stop. It's too sad to comprehend.

 Rest in peace beautiful, smart, kind Bethany. I'm sorry you were treated this way. My thoughts and love go to your family and friends.

 There is a gofundme to help Bethany's family with funeral expenses. Please drop them a few dollars if you can spare it, or share the link.

 Support:

 Lifeline: 131114, Kids Helpline: 1800551800, or the crisis line in your country.

 Changing Faces and YP Face It are also good resources to help young people with facial differences.

 I am not a doctor nor a psychologist, but I have lived experience in living with a facial difference. You can always reach out to me, too.

 Carly Findlayhttp://email@example.com