Carly Findlay's Blog, page 21

Using social media to educate children about facial differences

This morning I endured a difficult situation with children and their parent – it was due to fear of my face. I wrote about it here. And many people relate. 

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A post shared by Carly Findlay OAM (@carlyfindlay)

One of the things that has made a huge difference to me meeting children is when their parents introduce me to them via social media. 

I love it when I meet a friend’s child and they have already seen me. They’re already used to me face. My friend may have shown their child my photos and videos on social media. Their children know who I am, they aren’t scared, and see me as a friend already. It’s been joyous to meet children who are prepared for me.

(Sometimes I get sent lovely comments from kids via their parents on social media – complimenting me on my dress or smile, and even on my “pink sparkly skin”. This makes my day!)

I love that we can all just get on with our day – without embarrassment, difficult questions or outright fear. (All of which makes for a very difficult meeting.)

Generally a person with a facial difference has already done some work to educate others about their lives. What questions are polite to ask, what does discrimination look like, and how we’d like to be spoken to

Although it’s important for us to educate younger generations, the burden shouldn’t be on us to be the sole educators. Parents should use the vast resources we’ve created – our social media accounts, books, articles, art, music. Please don’t set up the expectation that we will answer every question your child asks us. Maybe their question is the first we’ve had that day, but it could also be the tenth, and the cumulative impact of curiosity is tiring. Preparing your child before meeting people with facial and limb differences, skin conditions, disabilities and other visible differences is a great way to show allyship.

I know it can be embarrassing when your child asks about someone’s facial difference, skin condition or disability, but it’s also traumatic for the person who’s the subject of the questions or fear. So it’s important you prepare your children.

Use social media for good. Follow and engage with lots of people who don’t look like you, and show your children too.

Social media can be cruel, but this is a great way to encourage kindness.

Check out Face Equality International’s destigmatising facial disfigurement resource.    

If has this post has helped you, please consider buying me a drink.

Hey disability allies! (#IDPWD21)

Hey disability allies!

I am so impressed and heartened to see so many allies stepping up this Disability Day. It’s a huge change from previous years.

But I’m still going to ask – hey disability  allies – where are you at?

Are you making your events accessible – holding them in wheelchair accessible venues, providing Auslan interpreting, pricing them affordably, catering to dietary needs, providing access info about the event on your website, holding events that aren’t too early or late in the day, providing a quiet room for participants to retreat to, recording and/or live streaming the event?

Are you making your digital content accessible – with captioned videos, image and video descriptions, content warnings, good colour contrasts, easy to read text and information in multiple formats (like Word, PDF, plain English, audio and video)?

Are you ensuring there’s a place for disabled people at every table; especially when working on or talking about disability issues?

Are you working to ensure more disabled people are in adequately paid employment – with accessible application and interview processes, accessible workplaces, providing flexible employment options ( part time, casual, flexible hours, job share, work from home options), and creating a safe space for disabled people to be ourselves and progress within the organisation?

Are you listening to and learning from disabled people – especially disabled First Nations people and disabled people of colour?

Are you ensuring your stores and restaurants are accessible (see event and digital access tips above – plus ensuring accessible changerooms, counters, seating options etc) and that your staff have undertaken disability awareness and cultural competency training?

Are you open to feedback about your inaccessibility and ableism, and are you responding empathetically  and implementing change?

Are you assisting us with lodging complaints  and advocating alongside us when we encounter ableism and discrimination?

Are you calling in your friends when they use ableist language, explaining why it’s harmful to disabled people – even when it’s not directed to disabled people? (Nobody ever uses a disability slur as a compliment.)

Are you convinced that disability is not a tragedy or something to be ashamed about?

Are you saying the words “disabled” and “disability”, rather than euphemisms like special needs and differently abled?

Are you doing these things  today (#IDPWD) and every day?

Has this post helped you? Will you use it in your work or at school? Please consider buying me a drink.

Image: Selfie of a woman with a red face, short dark curly hair tied back, wearing a colourful floral dress, and a parakeet wreath brooch and a quokka wearing a blue koala onesie brooch, plus a pink scrunchie in her  hair. She’s smiling, sitting in front of a white wall. “Hey disability Allies!” Is in a pink rectangle above her head.

Dear disabled friend on International Day of People with Disability 2021

Dear disabled friend,

Happy Disability Day!

Disability is broad. It encompasses physical disability, diverse mental health, sensory impairments like Deafness and blindness, cognitive disability, neurodivergency, chronic illness, and dynamic disability – that is, conditions that change in severity from one day to another. And external barriers, and sometimes our bodies, are disabling.

If one or more if these apply to you, you’re welcome in the disability community! Even if you haven’t got a formal diagnosis. You belong. You can call yourself disabled (if you want to).

You don’t need to disclose your disability to ask for accessibility provisions.

Your body and mind are not broken or unworthy or unlovable or unsightly because you’re disabled.

Look outside your diagnosis. And look outside whiteness – to First Nations and people of colour members of the disability community. You’ll be amazed with how many shared experiences you’ll have with other disabled people. Meeting other disabled people with different diagnoses was one of the things that helped give me permission to call myself disabled too (even though I’ve had ichthyosis since birth).

Be a welcoming committee to newcomers to the disability community. Tell them what to expect, and encourage them to connect with the community. It’s a wealth of knowledge and support.

And if you’re new, be opened to being welcomed. Don’t reject the lived experience of other disabled people.

Be a good ally within the community. Advocate for others if you can. Pass on jobs and opportunities. Don’t police other people’s disability experience or presentation. Your disability experience or way of doing advocacy isn’t the only valid one.

You don’t have to be friends with every disabled person you know.

Celebrate the success of disabled people. One person’s success doesn’t diminish your value. Success makes more space for everyone.

Disability pride and also frustration about your disability can co-exist. I know it can be a full time job managing your disability and all the medical admin and the ableism encountered. It’s a lot.

You deserve to be paid adequately for your advocacy work – for all work.

You also don’t owe people explanations about your disability.

Take up space, unapologetically. You deserve to be here.

Happy Disability Day to you! I hope you have a great day.

Much love x

Image: Woman with a red face, short dark curly hair, wearing a pink and purple and white long floral dress and link sequinned jacket, standing near a big floral arrangement, smiling. “Dear disabled friend…” is in black text on a beige wall behind her.

How to be a good ally when a disabled person you’re with receives stares, questions, comments and discrimination

It’s community question time!

”How do allies respond to the stares, questions, comments and discrimination disabled people receive?”

This is a question I get a lot – especially from new friends, as well as new parents of kids of Ichthyosis.

It can be quite confronting and upsetting – and it’s hard to know what to do. Seeing the person you love receive intrusive questions and be ridiculed is hard, especially when it’s relentlessly cruel.

My parents were always quick off the bat with “she was born this way” or “no, she’s not sunburnt” when I was little. Mum once told me she left me outside a shop in my pram (it was the early 80s!) and she came back to a few people gawking at me! I know

Adam took a little time adjusting to the stares, questions and comments that I get. He commented that it was really noticeable, but now he rolls his eyes with me, or says funny things back.

Personally, I don’t love being spoken for, I can usually hold my own. I don’t want a friend or family member or colleague to provide an explanation about my appearance or skin condition.

But I do like it when the person I’m with speaks up to say that the behaviour is rude, and also when they acknowledge what happened to me. Like “I hate to see this happen to you, are you ok?”. I have a really fond memory of a former manager asking if I was ok after some discrimination happened to me – he said he didn’t know what to do to make it better, but just the acknowledgment that it was shit was enough. I also had a stranger on a tram call me an Uber after rude mother daughter pair refused me a seat as I didn’t have a card to prove I am disabled.

So here are some tips from me:

A stranger doesn’t have the right to know a disabled person’s diagnosis or medical history – even when asking about access provisions.Have some responses up your sleeve – like “it’s none of your business” or “please don’t be so rude”. You don’t have to be polite – especially if the person with the questions and comments isn’t polite. The disabled person is not a teachable moment – don’t divulge more info about them than you would yourself.Parents – you don’t need to tell a stranger your child’s medical history. This can set up an expectation for the child to do the same.If you witness a discriminatory incident, offer assistance in lodging a complaint. I know this can be a really confronting thing for the ally to witness, especially if they’re a parent and they’re constantly on the receiving end of it/their child can’t speak for themselves. I definitely recommend getting some counselling and talking it through with a trusted friend. I get stared at so much – it’s been nearly 40 years of it – that I don’t tend to notice if it’s not overt. Please don’t point it out to me if you’re noticing it. Just let me enjoy my day. It’s also not helpful as an ally  to tell your friend how hard it is to watch this happen, or that you didn’t know what to do, or now you too have experienced discrimination  – especially if you’re not going to make a concerted effort to help remove the ableism as an ally.Don’t stop going to a place or doing a thing because you’ve experienced ableism – that only makes the disabled person feel they’re the trouble. Work on asking the venue/event organisers to make it a safer space.And it definitely isn’t acceptable to stop seeing your friend because the ableism they receive is too much for you to handle. (I’ve had this happen.)

And the most important thing is, to tell the disabled person that they’re worthy, that they aren’t the sum of the rude comments and questions being thrown at them, and that you love them. Make it known that they are loveable, even when they feel they’re not.

Now it’s over to you. Do you have some tips on how to be a good ally when ableism happens to a disabled friend or family member? Leave a comment on my Instagram.

Image: a woman with a red face and short dark curly hair tied back, standing at a sandy wall. She is wearing a red and pink dress and a colourful jacket over her shoulders. She’s adjusting dark sunglasses. In the top right is blue background with white text that reads “How to be a good ally when a disabled person you’re with receives stares, questions, comments and discrimination”

Has this helped you? You can buy me a drink – please!

Not your Halloween costume

It’s Halloween tomorrow.

Please don’t dress up as people with face differences and skin conditions, or as disabled people, for Halloween. It’s extremely harmful.

You might think it’s just a fun form of creative expression, but when people like me are constantly being represented as scary, villainous and evil, it gets really tiring.

One of the most devastating things about having Ichthyosis is when kids are scared of my face.

A few years ago I did a radio interview when after I sadly said that “[kids pointing at me in the street} can be really hard, I don’t want to scare kids,”; the host said, “that can’t be good at Halloween” – referring to my face. It was humiliating and disrespectful.

And so, I strongly believe that Halloween costumes that emulate facial differences; as well as other types of disability – including the use of mobility aids, perpetuate that damaging narrative. They position us as the enemy, as evil, as fearsome. Costumes like these also suggest that our facial differences, skin conditions and disability are temporary.

My face and body is not a costume. Those dressing up as a person with a facial difference, skin condition or disability can take their costume off at the end of the day, and be free from the mocking and staring and discrimination. That’s a privilege that me and my community doesn’t have. And it can take years for us to build prideful feelings about ourselves – and that can be shaken quickly, because of the way we are represented in costume and in film.

I also believe this is cultural appropriation – just like dressing up as a Black person when you’re white; or a transgender person when you’re cisgender. Don’t.

I do know some people with ichthyosis ahd facial differences see Halloween is a time to dress up and blend in – and that’s great because they’re in control of their portrayal.

But it’s not for non disabled people to appropriate our appearances.

There are so many ways to celebrate Halloween – without harming people with facial differences, skin conditions and disability. Be creative and have fun without hurting us. Here I am with some Halloween themed brooches and necklaces.

Check out the important work done on Halloween and also #IAmNotYourVillain by Changing Faces and Face Equality International and other individuals.

And if this has helped you, you can buy me a drink. Thanks!

PS: I am not engaging with devils advocates on this. Do not justify your ableist Halloween costume to me.

I had meant to write this a while ago, but I’ve been busy, and the thought of it exhausted me. I’ve written a lot about Halloween on my blog and social media in previous years, and there’s a chapter in my book, Say Hello, too.

Images. 1. a woman with a red face and short dark curly hair wearing a red jacket over a floral dress, and a Hello Kitty witch necklace, and a black cat hello kitty brooch. She’s smiling. 2. The same woman wearing a colourful wool jumper and a brooch that’s a Black witch with green hair and a skull ice cream brooch.

Links:

Having a happy Halloween

Halloween costumes: I have dwarfism and to me, people dressing as Oompa Loompas is not just a bit of fun

Fake scars, burns, mobility aids: Why disability activists are calling out ‘dehumanizing’ Halloween costumes

Scary face at Halloween

ABC presenter’s bizarre interview with disabled woman: ‘You look like a burns victim’

Unapologetic

Image: three purple wisteria bunches hanging near a fence.

I’ve been thinking a lot about how I’ve been made to feel like I must put non disabled people’s comfort before my own when requesting access from them, and when I’ve spoken up about their ableism (intended or not).

I’m going to stop doing that.

I’m going to ask and speak up, publicly, loudly and unapologetically. And if they make it clear that disabled people are not welcome in their events, organisations, stores, movements and online spaces, I’ll leave.

Me politely asking for accessibility is not asking for too much. Its not humiliating a business or ruining their reputation. It’s asking for a human right to be met.

(Last year I got this statement from the Australian Human Rights Commission::

“The Disability Discrimination Act 1992 (Cth) makes direct and indirect discrimination on the basis of disability unlawful, unless an exception or exemption applies (for example, unjustifiable hardship). The DDA operates in the context of different areas of ‘public life’ such as education, employment and the provision of goods, services and facilities. The accessibility of websites and social media are relevant to a number of areas of public life – for example, using a website to access a service.

Article 9 of the Convention on the Rights of Persons with Disabilities asserts the right of people with disability to participate fully and independently in all aspects of society, including the internet and access to information. While accessibility has traditionally been thought of in relation to our physical environment, it must now also be central to the decisions we make about the hardware and software we invest in, together with how we communicate information on the internet and through social media.”)

 

Telling someone their words or actions are ableist, discriminatory and harmful is not an attack on them. It’s asking them to reflect, apologise and do better.

I won’t accept unchanged behaviour. I’ll support and follow and feel safe in the spaces of those who commit to access, inclusion and respect. I’ve got no time for those who don’t make time for me and the wider disability community.

Also, this is my first wisteria sighting – it’s not even Spring yet!

Has this post helped you think about disability and access differently? Will you use it in your work? You can buy me a drink here. 

On AllySHIT

Image: a selfie of a woman with a red face and short dark curly hair, partially smiling. She is wearing a colourful dress, and three brooches pinned to her dress. One is pink care bear with a rainbow on its tummy holding a rainbow ballon; and a yellow care bear with a sun on its tummy.

Absolutely exhausted and disgusted at the AllySHIT I’ve seen – and been on the receiving end of – today.

My photo – along with many others peoples’ – was misused (without my consent) in an inspiration porn video about facial difference. Some of the text above the video mentioned how brave we are for publicly exposing our faces,, and that it’s ok for people to be confronted by our facial differences. After I asked for the video to be removed – and thanks to others who commented – the video was removed. But it had been on YouTube and Facebook for over a year. Luckily it had such few views.

And when I commented on a post about facial difference as a book week costume, saying that disability appropriation is hurtful and harmful, I was told to respect the way the non disabled person advocates for people with facial differences. That post was taken down, but not without a lot of defensiveness.

The person who made these posts has attached themselves to facial difference advocacy with no lived experience. Lived experience isn’t about the proximity you have to a disabled person, by the way.

No, I will not respect this form of advocacy, and I won’t be quiet.

Facial difference is not a costume for us, and those dressing up as a person with a facial difference can take their costume off at the end of the day, and be free from the mocking, staring and discrimination. That’s a privilege that me and others who have facial differences, skin conditions and who are disabled doesn’t have. Disability appropriation (and cultural and racial appropriation) is very hurtful and harmful.

Non disabled people need to stop speaking over disabled people, stop centring themselves in disability rights and media, listen to us and stop getting defensive when we call out their AllySHIT, and stop appropriating our identity and culture for awareness purposes.

I’ve got a lot more to say on this topic. This is just the start. I will no longer be silent, polite to make others comfortable, or call this out privately- especially when it’s done publicly.

My face will not be used in your AllySHIT.

No devil’s advocates please.

More on how to be a good ally here. 
Buy me a drink here. 

 

Image descriptions on text based posts

Content creators! That’s all of you reading/watching this post! And I’m especially talking to media and brands here.

I can’t read your text based images – and nor can many other disabled people. In this video I talk about how Ichthyosis affects my eyes.

Text based posts are screen shots from news articles, tweets, notes, memes, infographics etc

Image descriptions aren’t only for photo/picture based posts on social media. They’re for text based posts too.

Please, please, PLEASE copy and paste the text from your text based post in the main social media caption (on Instagram or Facebook), so disabled people can read it! Without doing so, it’s not accessible – especially for people who use screen readers, and also for people who can’t read small print or have light sensitivity (like me).

Remember to copy the text from the source before you post a screen shot on social media. And use a character recognition tool like www.onlineocr.net if you don’t have the original text – you can upload the screen shot image and it spits out the text for you to copy into the social media post’s caption.

This needs to be done for all text based posts – not just when we request it. (And on image descriptions on all picture based posts, too.)

Factor doing image descriptions into your content creation process!

Write or source your text that you want to share to social media.Copy the text (save it somewhere if you need).Create your meme or text based post.Upload it to Instagram.Paste the text you’ve copied (and extend it into the comments if you have too much text for Instagram).Finish writing your social media post’s caption, proof read edit.Post!

Yes, providing accessibility takes a little more time, but constantly asking for access to be provided is incredibly time consuming for disabled people. Thanks for your allyship.

Save and share this post for future reference. I always demonstrate accessibility on my Instagram and Facebook posts – scroll back to see how it’s done, and implement it yourselves – no matter how big or small your following is, accessibility is for everyone.

Video: a woman with a red face and dark curly hair tied back, talking to camera. She’s wearing a colourful dress and a brooch that’s Hello Kitty floating on a red apple. A white wall is behind her. Captions are on the screen.

Transcript: Something I don’t talk a lot about is my eyes. I have Ichthyosis and part of that means that my eyes are very sensitive to light. My lower lids don’t retold the tears because they’re not elastic enough. And the constant dryness and tears that stream from my eyes mean that I have trouble often keeping them open and seeing things. So when I asked for image descriptions, particularly image descriptions for text based images, that is screenshots of text or means, I’m asking for the wider disability community and I’m also asking for me, it’s increasingly harder to read content that is text based and I would love it if you could copy and paste your text and put it in the caption of your Instagram posts or Facebook posts.

If this has helped you, you can buy me a drink! Go to CarlyFindlay.com.au/support-me to do so. Thanks!

On alerting disabled people to disability issues online

You don’t only have to alert the disabled people you know about disability discrimination and accessibility issues.

I get SO many notifications a day from well meaning (usually non disabled) people, alerting me to the latest story about discrimination, or asking me to share info and articles to my networks.

Don’t just tag me. Tag your non disabled friends and followers – because they’re the ones who need to help dismantle the ableism by doing the work. They’re often the ones who hold the power.

Chances are your disabled friends are already across so many of these disability and accessibility issues – through the news, our friendship groups and social networks. And many of us are living and struggling with that exact issue you’re alerting us to.

We know.

And we’re tired.

Tired of being expected to do all the work, of non disabled people thinking they have done the work just by letting their disabled friends know. Tired of never seeing these people actually speak of disability and access issues publicly on social media or elsewhere, and not making a concerted effort to provide accessibility. Tired of the vicarious trauma through seeing discrimination and hare speech again and again.

While I’m at it, don’t tag me in your social media post to show me you’ve done an image description or captions – and then never create accessible content again.

Allyship is a verb. It takes work. Tagging a disabled friend and doing nothing further to improve disability rights, inclusion and access is just laziness.

Image: a black square with gold text that says “You don’t only have to alert the disabled people you know about disability discrimination and accessibility issues. CarlyFindlay.com.au”

Has this post helped you? You can buy me a drink here! Thanks!

Stop asking disabled people to work for free (or almost free)

Louder for those up the back:

Disability organisations (and all other organisations) need to stop asking disabled people to work for little to no money. It devalues us.

I got this lucrative offer from a disability support organisation last week – it was initially sent to my speaking agent but she said no, so it came directly to me. I was asked to provide a keynote speech for the payment of $50 – OR donate the payment back to the organisation.

I sent beck this. Angry, and tired this keeps happening.

“Hi ,

This is an insulting offer of remuneration. To be paid $50 for a speech is as bad as being asked to work for free.

$50 won’t pay my rent, fuel, food, medication, etc.

It won’t just take one hour. It will take 1-2 days of preparing the speech, plus travel, delivering the speech, plus the emotional energy of answering questions after the speech.

What’s more, it’s taken me 12 years of professional writing and speaking to get to this point.

Asking a disabled person to work for low or no money implies we aren’t worth much, but that we exist solely to benefit others.

Asking us to consider donating it back to the organisation to benefit others implies we are charity.

And a disability organisation offering this fee is incredibly disappointing, given 45 per cent of disabled people live on or below the poverty line, and the rate of unemployment of disabled people is far higher than others.

I hope you don’t ask any more disabled people to speak for this fee, or encourage them to donate it back to the organisation. Please consider paying well above this fee – $1000 is an ideal minimum fee.

Thank you,

Carly

Carly Findlay OAM”

I know my worth, and I know my community’s worth. And the staff would be paid, and above paltry wages. So why don’t they value disabled people enough to do the same?

Disabled people need to always say no to these requests.

Yes, I know creatives are often asked to work for free. I work as one. This is specifically about disabled people, though.

(Note: I have not named the disability organisation and have replaced the impairment/diagnosis with the term “disability”.)

Image above: a screen shot of a Facebook post by me. Text reads:

I got this lucrative offer to deliver a keynote speech.

“Agreeing to participate in this program would take approximately 1 hour of your time (excluding travel to and from the site). You may choose to donate your time as an act of goodwill towards people experiencing [disability]. Alternatively, [Organisation] can offer guest speakers a modest payment of $50.”

AN ACT OF GOODWILL!!!