27 June 2016

Six podcasts about disabilities, chronic illnesses and mental health that I love.

Six podcasts about disabilities, chronic illnesses and mental health that I love.

The hands-down best thing about the Internet is how it's allowed so many of us (especially from marginalised communities) to have a voice. We can all be media makers and have an audience. And the first-person perspective is so valuable - and increasingly more prevalent. Five years ago, it was other people telling out stories. And now we are doing it for ourselves.

These podcasts are all hosted by writers who have disabilities, chronic illnesses and mental illnesses. I especially like these podcasts because they discuss broader issues around disability, chronic illness and mental health - issues sometimes difficult to acknowledge individually when we are wrapped up in the day to day of coping, and sometimes hard to discuss with others affected by our conditions.

Disclaimer: I'm soon to be featured on three of these podcasts. I'll let you know when my episodes are up.

Please also note that none of these podcasts apart from The Accessible Stall and In Sickness + In Health have transcripts.

Fully Sick - hosted by Jenny O'Keefe

Fully sick podcast logo
 

Jenny is an Australian writer, radio presenter and marriage celebrant. In the middle of last year Jenny got in touch with me, recommending a hairdresser for my wedding (who I contacted and contracted - and she made my hair fabulous!). Later in the year, Jenny wrote to me again to tell me about her planned podcast and invited me to be interviewed. Of course, I said!

Jenny has fibromyalgia and spent all of episode one talking about her experiences with her wife Tracey. She is upbeat and is incredibly giving with her story.

Jenny interviews a different person with a chronic illness or disability in each episode. The guests have shared so much about themselves and I've learnt (and empathised) a lot.

She's three episodes in, and I'm enjoying it very much. She's got a great rapport with guests, and she's funny! I really like the medical and psychological perspectives from two professionals, too.

Listen here. Follow on Facebook.

The Anxiety Shut-In Hour - hosted by Anna Spargo Ryan and Erin Van Crimpen

The anxiety shut in hour podcast logo

Anna and Erin talk about anxiety, depression and suicide on the Anxiety Shut-In Hour. I've listened to a few episodes, and I've learnt a lot about mental health.

The women are articulate - speaking about themselves, current issues and offer useful advice for people living with mental illness.

The intro theme is very kooky.

Listen here. (And on other platforms listed on the podcast website.) Follow on Facebook.

Also, Anna has written a beautiful debut novel which is on one of my favourite books ever. Every sentence is breathtaking. Seriously read it.

Order Anna’s book: Readings | Booktopia | Amazon (Kindle

Just a Spoonful - hosted by Kaitlyn Plyley

Just a spoonful podcast logo

I am in a wonderfully supportive writers group on Facebook and one day I saw a post by Kaitlyn Plyley, an Australian writer and performer. She wrote of a massive achievement for her podcast - interviewing Jill Pantozzi, a US journalist. I asked Kaitlyn where I can find her podcast, and she posted the link to her website. I immediately downloaded all the episodes and have been listening to one episode a week.

And I love it! I love the long form conversations she has with her guests. Like with Fully Sick, each guest has given so much of themselves. Much of the discussions are wider than chronic illness - Kaitlyn and her guests chat about all sorts of things including career, pop culture, fashion and life in general. I loved the chat with Amy Dallas - a young woman who is so incredibly accomplished and driven.

The theme song is pretty, and I often find myself humming to it, even when I'm not listening to the podcast.

When Kaitlyn interviewed me for the podcast, we giggled so much. Gosh it was fun! She looks a bit like Justin Bieber, and we both love Darren Hayes. She's just moved to my city and I cannot wait to meet her in person. I told her I have a crush on her accent.

Listen here. Follow on Facebook.

BBC Ouch

Bbc ouch podcast logo

Stella Young first told me about BBC Ouch when she was launching ABC Ramp Up. It's a UK radio program hosted by UK journalists with disabilities.

The hosts cover issues around accessibility, disability politics, British politics, media, arts, identity plus more, and interview guests with disabilities.

I love that this puts disability in the mainstream.

And there's a BBC Ouch blog, too.

Listen here. Download from the BBC website. Follow on Facebook.

The Accessible Stall Podcast - hosted by Emily Ladau and Kyle Khachadurian

The accessible stall podcast logo
 

Emily Ladau is one of my favourite writers and disability activists, and so I was excited to see she has recently released a podcast with her co-host Kyle. Fangirling!

The hosts don't always agree on everything, and this is the beauty of listening to them. The episode about identity is a great example of this. Emily sees disability as part of her identity "just as much as being Jewish and being female - a large aspect of what makes me who I am", she said. But Kyle doesn't feel the same. He acknowledges his disability, but it "means as much to me as being a male or brown-eyed - it doesn't really have any intrinsic value", he said. "It doesn't play into the person I am, though I give it credit for playing into the person I became. It's just there."

They've also made me think about things differently - since listening to the episode about the pre-cut fruit, it's made me consider what's worth speaking up about. It can be easy to het outraged about a seemingly little issue, especially when it's a collective effort, but that means it can also detract our energy from advocating for/against bigger issues.

Listen here. Follow on Facebook. All podcast transcripts are here.

In Sickness + In Health - hosted by Cara Rael

In sickness and in health podcast logo

I think I came across In Sickness + In Health when the podcast Twitter account retweeted a tweet of mine. I clicked through to their account and saw it was a podcast! Hurrah! I downloaded most of the episodes and have listened to each when I've had a long task to do.

Similar to Just a Spoonful and Fully Sick, IS+IH features a chats with different guests with varied conditions. The conversations are in depth feature perspectives from different countries.

Even though the podcast has only been broadcasting since October 2015, there is a big back catalogue of episodes. There are often bonus episodes - I love this because often at the end of a podcast, I want to hear more from the guests.

The disclaimer at the start of each episode is wonderful - do not recommend any treatment to the guests, no matter how well meaning you are!

I had a long chat with Cara and it was really fun! She asked me a lot about the Australian healthcare experience, and she was interested to learn how much it differs from America.

Listen here. Follow on Facebook. Transcripts from a few episodes are here.

I am so excited about these podcasts. They really are great listens that feature interesting people, and I've come to make some genuine friends with some of the hosts. Do give them a listen.

How to listen to podcasts:

Some podcasts can be downloaded (saved and/or streamed) from program websites. Many are linked to radio programs and can be streamed through their websites.

You can also download podcasts through apps on your computer, tablet or phone. I listen to mine on my iPad and iPhone. You can download through iTunes (this is how I listen to them) or other apps such as Stitcher. A list of 10 great podcasting apps for many operating systems can be found at Tom's Guide.

I listen to podcasts on iTunes, and have linked to the iTunes podcast stream for each podcast here. But I've also included the websites for all of the podcasts in this blog, so click on the links for more listening options.

What chronic illness, disability and mental health podcasts do you recommend?

16 June 2016

Me Before You - disability as a tragedy and the laughing able gaze.

This post discusses suicide. If you need to talk to someone, please call Lifeline on 13 11 14, or QLife 3pm-12am on 1800 184 527, or the equivalent support service in your country. It also contains spoilers about the book and the film Me Before You.

 

Me Before You is released in Australian cinemas today. I saw the film last night (at a special 'girls' night out'), and have read the book. (Yawn!) However, I had formed an opinion about the film before I had seen it, based on others’ valid commentary, and my own experiences and insight into disability themed and led media.

Me Before You, based on JoJo Moyes’ 2012 novel, is the story of the relationship between Louisa Clark (played by Emilia Clarke) and Will Traynor (Sam Claflin). Louisa takes a job caring for Will – who became a quadriplegic due to a pedestrian accident. Will was a high flying money maker, and gave that up since the accident. He wants to end his life in six months, and Louisa tries to show him that life is worth living.

Louisa is perky and quirky, saying mildly humourous things that I found ironic when juxtapositioned next to disability. "There isn't much that can't be solved by a cup of tea", she told Will early on. Well, how about attitudes towards disability? Employment rates? Accessibility? Internalised ableism?

The film has been marketed as a romantic tear jerker. As my friend, Kaitylyn Plyley, podcaster extraordinaire said, "Girls night out. Watch a disabled man die. I don’t know what these cinema marketers think girls do on nights out." My film-buddy Kath (who giggle snorted throughout the screening) called it a "woe-mance". Also, in one scene, Joanna Lumley's character said "one can't do these things sober", and I wished I had a drink to help me through.

The main message the film conveys that death is a better option than living with a disability. Will ends his life because he has a disability. That's the only reason. He cannot live differently to the way he lived prior to his accident. He has the wealth and support to live a comfortable life - which many people with disabilities don't have.

The film highlighted the expectation of a non-disabled person to be a hero, to save the disabled. Louisa took care of Will and she learnt a lesson. She told him that. She needs him to be a better person. Disabled people are not your teaching moments.

There is also the issue of a non-disabled actor cripping up, the portrayal of disability as a tragedy, and the way our response has been shushed by non-disabled people.

There's not much to say about Me Before You that hasn't been said by my fellow disability activists already. For one of the first times that I've known, the collective voice of the disabled community has been hear loudly. As Buzzfeed headlined, The "Me Before You" Backlash Was Bigger Than Anyone Expected.

Seventeen year old Stella Barton wrote an excellent piece this week on why she won’t see the film.

Dominick Evans has written about the problem of Hollywood telling us it’s better to be dead than disabled, and led an excellent campaign on Twitter.

Twelve year old Ella Frech wrote an open letter exploring themes beyond her years, asking "Dear Hollywood, Why do you want me dead? Please don’t deny it. The movies you make tell me the truth about what you really think about me.".

Jax Jacki Brown explained her concerns for young, vulnerable people with disability getting the message that death is better than being disabled, and also about the protest we are holding tonight.

There are also the brilliant Huffington Post and Karolyn Gehrig articles, from which I’ve quoted towards the end of this piece.

And the Center for Disability Rights in New York created a video showing just how many films feature the same narrative that death is better than disability, and assuring disabled people their lives are worth living. The disability-led commentary has been amazing.

Despite our loud voices, there's still shushing from the non-disabled, telling us what the film is about, and how we should feel about the film.

The film's director, Thea Sharrock, believes the activists anger is a "misunderstanding".

Writer, JoJo Moyes (who also wrote the screenplay) said you can’t judge a character "unless you put yourself in somebody’s shoes". Many disabled people are in Will Traynor's shoes, JoJo.

Actor, Sam Claflin didn’t even want to engage with the disability activists during his chat on Twitter, ending the chat early.

And the online commenters - ablesplainers - are telling us to get over it. It’s just a film!

When I first wrote about the film on my Facebook, and shared links to others’ writing, I was told that I had to watch the film to make a proper judgment. My lived disability and media experience didn't count. I was told that it wasn’t REALLY about death being a better fate than a disabled life, and disability hasn’t been portrayed as a tragedy – Will was just an arsehole. So much ablesplaining.

Oh, but it's just a book and a film. Relax, it's fiction. So, what’s the problem?

Popular culture has a huge impact on the way disability is perceived. And in this case, the book and film has portrayed disability as a tragedy. Many readers and viewers will get their perspective of disability from this book and film, yet won't even interact with an actually disabled person. They won’t see that a person with a disability can have a joyous, pride-filled life.

Readers and movie goers are crying over Will Traynor's death, yet are they crying over the barriers and discrimination actually disabled people face in our everyday lives? Do they know about the low employment rate and poverty experienced by so many, and what are they doing to change that? How are they changing their low expectations of people with disabilities if they regard Louisa as a hero for caring for Will? (I am amused that art imitates life, and Louisa has zero qualifications to care for Will.)

(Just on low expectations, I've been thoroughly researching what people have said about the film. I listened to a podcast that reviewed it, and one of the hosts thought the portrayal of Will was unrealistic because of his disability. He was too attractive for a man with a disability, she implied. She went there.)

I'm concerned the only exposure to disability people will have is through a schmaltzy, fictional depiction of us. They see 'us' through the movies, and they cry. And they laugh at our disabled quirks. They see us in real life and they pity us, or other us, and never get to know that our lives are worth living. Are they even getting to know people with disabilities away from popular culture? The able gaze is narrow. People are fascinated by how we move, eat, think, have sex, and can be loved, and they look away quickly. It's easier for readers and viewers to get to know disabled people from the comfort of seeing us through fictional characters, feeling like they’ve learnt something about disability just by consuming Me Before You.

While watching the film, I paid attention to the audience's reactions. The audience laughed at the severity of Will's disability symptoms - like spasms and voice, and any scenes that hinted at love and sex. Was that funny for them? Awkward? A bit gross? Can a disabled person even have sex or be found attractive?! (That question was evidently on people's minds from the laughter I heard.)

The saddest thing for me during the film was hearing the audience laugh at how inaccessible the race track was for Will's wheelchair. It sunk into the muddy grass and he looked frustrated. Help was called. This inaccessibility is every day for disabled people. And the audience laughed.

The laughing able gaze was sickening while watching the film last night. There was more laughter than crying - perhaps the audience didn't see disability as a tragedy, just an awkward thing to laugh at? As I live-tweeted the film, my Twitter followers told me they were disturbed at the audience's laughter, too.

Karolyn Gehrig wrote about the able gaze in her brilliant piece – perhaps my favourite among the Me Before You commentary:

"We see you. You do not see us.

Nothing I do transcends disability. It is deeply entrenched in every thought, action, and interaction. To deny its inextricable nature is to dismiss, shirk access, make the world more unforgiving for me, and those in my community. Especially those who do not yet identify as members of the disability community, out of fear or self loathing. Those who might "want to see Paris, but as me." You do your companions no favors by rendering disability so flat."

I do wonder if all those people who support the tragic narrative of disability and cripping up by non disabled actors would go see theatre, films, music and art made by actually disabled people? Would they see our take on disability, or prefer Hollywood and airport bookstore schmaltz?

Another issue is Sam Claflin cripping up (a non-disabled actor playing a disabled person). Ablesplainers say "BUT IT'S ACTING. THEYRE PLAYING A CHARACTER. THEY ARE PRETENDING TO BE DISABLED."

The role could have gone to an actually disabled actor. Most likely he will win some sort of award for being a hero and playing a disabled character. As Scott Jordan Harris wrote:

"Able-bodied actors should not play disabled characters. That they so often do should be a scandal. But it is not a scandal because we do not grant people with disabilities the same right to self-representation onscreen that we demand for members of other groups who struggle for social equality" .

There are so many disabled artists who could play have played the role of Will Traynor. Blacking up is not acceptable in film and wider society, so why is cripping up?

I also want to acknowledge that not everyone feels the same way about the film as myself and other disabled activists, especially around the theme of assisted suicide. As Holly Warland wrote in her very articulate piece on Daily Life:

"I see the character's decision to end his life on his own terms empowering. I'm in a very unpopular section of disabled society who believes in the right to assisted suicide for those competent enough to make the decision for themselves. For full disclosure, I will reveal that as a 24-year-old woman with Muscular Dystrophy (this involves the deterioration of my muscles from the chin down over time and means that I rely on 24-hour care), I plan on taking my own life once my disability causes me more grief and anguish than I feel is worth living for."

It’s a very complex issue, and I respect all views. If it comes to the time when my skin is too painful to bear and my quality of life is reduced considerably, I hope I have the choice of voluntary euthanasia. However, like Jax, I do worry that the message of this film might prey on vulnerable people with disabilities, it might make them think they are better off dead.

I don't have an acquired disability, and I don't have the type of disability Will Traynor has. The physical barriers he and so many of my friends encounter are not my experience. But I do have a disability, and experience the same attitudinal barriers he and my friends experience. I've also experienced that internal ableism he feels - for a long time disabled was the last thing I wanted to identify as. There was a time when I was young that I wanted to die, life was so isolating. And I've had people tell me if they'd were me, they'd kill themselves. This has happened a few times.

I was on a date once. He was nice - academic, good at making conversation and funny. I was gazing at the way his hair flopped over his forehead when he told me if he looked like me, and had my skin condition, he'd top himself. He couldn't handle me publicly telling my story, he wasn't comfortable with me being proud. And he thought my life was so hard it was easier not to exist. This hit home how others see us, how Hollywood sees us. Lives not worth living. And I don’t want that to be the message that keeps on being perpetuated.

(Some friends did a fake fundraiser outside a Perth cinema last night, asking people to donate to send them to a Swiss suicide clinic, like Will did in the film. People donated, without question. This is very disturbing. People thought my friends were better off dead.)

Many people within the disability community are angry about the book and film. But we’re also angry about how we’re being told to feel about the film. It’s the same old case of being grateful disability is even covered, of having our feelings and life experience invalidated. Mik Scarlet so eloquently wrote for the Huffington Post:

" Throughout the comments sections of blogs and articles explaining disabled people’s views are non-disabled people telling us we’re wrong. Not just about the film but pretty much whatever we’ve said. Our real life experience is nothing compared to stereotypes and beliefs of those who can only imagine how they might cope with impairment. Hence a debate around a work of fiction has become something bigger. To me it has now opened the lid on the truth behind how society sees disabled people. The key message from the recent protest around Me Before You is disabled people should just be happy that good intentioned people are trying to do something for us, with no experience of what it means to be us, and without really talking to us. We are not allowed to be experts in what our lives are like, or what we want? The mantra of all campaigners for disabled people’s equality is "nothing about us, without us" yet this whole furore has proved how far we have to go to achieve this goal."

One of the most poignant passages of the book for me was the part following a day out of the races - tiring from inaccessibility and staring. It particularly resonated with me because of so much of the shushing that's gone on towards the disability community. It is such a true example of people speaking for us, over us. Perhaps JoJo Moyes had a premonition that we, too, didn't want someone else telling us how our lives should be run.

" ‘Is … something the matter?’ I said, when he failed to respond to my third comment about the local news.

‘You tell me, Clark.’

‘What?’

‘Well, you know everything else there is to know about me. You tell me.’

I stared at him. ‘I’m sorry,’ I said, finally. ‘I know today didn’t turn out quite like I planned. But it was just meant to be a nice outing. I actually thought you’d enjoy it.

I didn’t add that he was being determinedly grumpy, that he had no idea what I had gone through just to get him to try to enjoy himself, that he hadn’t even tried to have a good time. I didn’t tell him that if he’d let me buy the stupid badges we might have had a nice lunch and all the other stuff might have been forgotten

‘That’s my point.’

‘What?’

‘Oh, you’re no different from the rest of them.’

‘What does that mean?'

‘If you’d bothered to ask me, Clark. If you’d bothered to consult me just once about this so-called fun outing of ours, I could have told you. I hate horses, and horse racing. Always have. But you didn’t bother to ask me. You decided what you thought you’d like me to do, and you went ahead and did it. You did what everyone else did. You decided for me.’

I swallowed.

‘I didn’t mean to –’

‘But you did.'

He turned his chair away from me and, after a couple more minutes of silence, I realized I had been dismissed."

So relevant, hey? (The movie left the race scene in, but skipped Will's assertion that he preferred not to have someone else decide what he wanted - I thought this omission weakened the film, implying others did decide what Will wants without asking. Of course, he was adamant that someone else didn't decide he should live on, live boldly.)

Will chose to die when he seemed most content. Loved by Louisa, surrounded by family. That's his choice, although it contradicted the so 2016 hashtag for the film - #LiveBoldly. But it was his informed, consenting choice, a complex one that was far too deep for a PG rating. The film ends with dead Will 'reading' Louisa a letter as she's in Paris (living the life he yearned for). "Live well" he told her. Yet Will didn't take his own advice.

There do need to be more films made about disability. But we need to be consulted in the creative process too. For us, this fictitious story is more than just a film we should get over. It’s a reflection of the low value and expectations society has for us.

There are people with disabilities who are not happy with their lives, and this is a valid, complex reality - I don't want to dismiss their feelings and decisions. But tragedy is not the only story about us. Disability should be an incidental part of a character’s life. Film makers need to show that for many people, disability is a proud part of our identity. We belong to a strong community. And our lives are worth living. Pride is a story.

Live well. Even with a disability. Because you can.

We are protesting Me Before You in Melbourne tonight. Come along to the Jam Factory from 6.00 pm if you're interested. Details on Facebook.

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Edit: here is some media I did around our protest.

I wrote a piece for SBS Life.

I was interviewed on ABC World Today and a different version on ABC news.

Quoted in the Sydney Morning Herald.

10 June 2016

Of child bearing age. At the doctor.

I went to the doctor with a pain in my head.

An ongoing headache.

She looked in my mouth twice, poking my tongue with an unsweetened paddlepop stick. I looked at the wall, lined with anti-obesity posters, as she took my blood pressure. I hoped she wasn't going to ask me to weigh myself.

My blood pressure is perfect. I was sent home with a script and instructions to take paracetamol. Come back and see her if the headache deteriorates.

After her observations, she engaged in small talk.

"You still working at the Office?"

"No, I work for the Department now."

"And things going well otherwise?"

"Yes, I got married in March."

"Are you planning to have children?"

"We aren't sure yet."

"Well make sure you come to get a checkup, three months before you start trying."

She glanced at my file. 34 years old.

And the small talk became big.

"Don't leave it too late, there's a strong risk your baby will be born with a disability."

I just got married five minutes ago, and now babies are a common discussion topic. It's been strangers asking nosily, but this time, it was a doctor because of her duty of care.

I smiled meekly, remaining silent. I hoped she'd stumbled across my work sometime. My writing on disability pride. Seen me speak, or perform. Spent time with my people.

But her head was probably in books about the medical model of disability. Diagnoses and grieving for a life lost.

I don't even think she realised there's a small chance of me passing on my genetic condition. Because no one seems to want a baby born with that other disability.

A baby could be born with any type of disability. And anyone could acquire a disability at anytime. It's a life lottery.

And then I wished she had the perspective of disability that I do.

That disability isn't a tragedy or a burden. Not a life sentence.

That can be a strong, positive part of identity.

That disability is not the worst thing that could happen.

And, did she forget that I too identify as having a disability?

Every woman of child bearing age must get this talk. Women with all sorts of perceptions about and exposure to disability.

I told my husband about the doctors appointment when he arrived home. Mentioned the headache, and we argued about the official term for a medical paddlepop stick. It's a tongue depressor, he said. I told him about the family planning discussion. He groaned. He also knows disability isn't the worst thing that could happen. And I loved him so much at that moment.

I just wanted to stop my headache. But now my heart aches from that brief discussion about the risk of having a baby with a disability. The discussion was not about fertility and how much time I have left to maximise my chances of conception. It was about disability.

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06 June 2016

Speaking Out by Tara Moss (I'm a contributor within!)

 

About a year ago I sent Tara Moss a link to a piece of writing I did, as I thought it was relevant to something she'd just discussed. I'd admired her writing for a while, excited to see her win blogging competitions. Since that day, she's been incredibly supportive of me and my work. Tara and I haven't met in person yet but we will meet when she comes to Melbourne this month.

Tara does great work in writing about feminism, speaking out about domestic violence and refugees, and deflecting the criticism received online. Remember when she went to a Syrian refugee camp, and all the comments were about her red lipstick, not the way she was helping people? She defended her choice to wear lipstick so articulately.

Late last year she asked me to contribute to her new book 'Speaking Out - a 21st century handbook for women and girls'. I was so flattered.

It arrived in the mail on Saturday, and I had tears of excitement. I've had a good flick of Tara's book - it's so well written and researched, and a great resource for online writers and public speakers - and women and girls in all sorts of industries.

Love. Thanks Tara! ❤️

My piece mentions how hard some criticism of my work can be, and how I manage self care. I speak out a lot - much more now than I ever did. Lately it's gotten me shushed, unfriended, blocked (especially if I mention disability slurs to people who just don't get the impact of them). I try not to let it worry me, but it's hard. Speaking out has also afforded me contact with amazing, likeminded people, so it's not all bad!

Never be afraid to send your writing to someone you admire. Look where it got me!

Synopsis from Harper Collins:

"An accessible and practical handbook for women on speaking out safely and confidently. Worldwide, less than one out of every four people we hear from or about in the media is female, and men outnumber women in parliament by more than three to one. If half of humanity's experiences, perspectives and possible solutions to world problems are under-represented, or entirely unheard, all of us lose out. Tara Moss has spent 20 years in the public sphere and has had to face down nerves, critics and backlash to emerge as a leader in speaking out. In this handbook she offers advice on preparation, speaking out and negotiating public spaces. With a special focus on public speaking, writing, social media and online safety, she offers tips on how to research, form arguments, find support and handle criticism. This is a guide for women young and old that not only helps them find their voice, but argues passionately for why it matters."

Buy Speaking Out at Booktopia.

 

 

03 June 2016

"When are the babies coming?"

 

When I tell people I've just met that I'm a newlywed, a common question is "when are the babies coming?" I reckon I'm asked this twice a week.

Adam and I went out to an event four days after our wedding and five people asked us about babies. It was awkward.

These questions have made me feel "normal, just like everyone else" because many friends have told me they were asked about their plans to have kids immediately after their wedding too.

But what people who ask these questions don't think of is that having children might not be as simple for me as for other women.

And they might not realise there have been people in my life who have told me I shouldn't have children due to the (low) likelihood of passing on ichthyosis. Oh, they have.

Sometimes strangers have asked me this, with their hands waving around their face in the universal language of "I don't know what to call it".

They ask, "What's the likelihood of you passing on your condition to your children?" And it's awkward because until recently I hadn't had that conversation with Adam, or my geneticist, and people are so damn judgmental of someone with a disability passing that disability down to their children.

Also, the desire (or not) to have children should not take away from our existing and future achievements.

Sometimes I get clucky when I see babies and baby clothes. And then I hear a screaming kid and think that I like our current low-responsibility life.

If women want to have babies and openly talk about it, we should be able to. If we don't want a family, we should be able to talk about our choice; or not. And if it's complicated - we shouldn't be expected to go through the pain of explaining why we can't have children or gritting our teeth and smiling at these well meaning conversation starters.

I'm not comfortable being asked when we will have children. Next time I'm asked, I'm going to say this - that I'm not comfortable discussing babies - instead of politely smiling and saying "maybe one day".

(I wrote this last year, it's about all the things I think of around having a child.)

(Picture: closeup of Adam holding my hand, close to my tummy, I'm wearing my wedding dress, he's in his suit. It was taken by Fresh Photography.)

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31 May 2016

9 Instagram stars who have Ichthyosis. (And please consider buying me a drink!)

9 Instagram stars who have Ichthyosis

A while back I wrote about the ways you can use instagram to connect with the chronic illness community. And my mate Starbrite Warrior wrote about this too. It's so ace to connect with others who know what you go through, isn't it? And Instagram is a good platform to use when you're not feeling great - as it just requires a thumb for scrolling, and some emojis if you're not really up to typing a lot! Also, taking selfies and sharing photos can be great for the self esteem of people with chronic illness and disabilities. What's not to love?!

I've found some great people who have Ichthyosis on Instagram - and I LOVE seeing their adventures in pictures.

As a part of Ichthyosis awareness month, I contacted them to ask if I can showcase their instagram. They all said yes! Here they are in their own words. They are so interesting and smart and I love them all. And they are all BEAUTIFUL. Go show them some love. (And I'm on Instagram -@carlyfindlay.)

@Clonecollector

 

"I suffer from a lot of other illnesses and currently just diagnosed with elhers danlos syndrome. Quite interesting because I don't see Ichthyosis Vulgaris and elhers danlos syndrome cases.

I'm from LA, but I have family in in Alabama also on my fathers side. I love going to the beach and it's become harder and harder due to photosensitivity and other medical conditions. I used to play tennis competitively until I could no longer.

My last diagnosis waselhers danlos syndrome, which has been invading my life in the physical, effecting my mobility. I plan on advocating Medical marijuana and cultivate my organic hair and skin raw line.

I've been taking care of my skin and hair needs due to deficiencies with my own remedies that I can't wait to finally share this year. I have very neglectful parents and I was on an 8 year quest after leaving the radiology dept on medical leave to find out what was goin on. I have a rather large medical web of things going on from lupus to dysautonomia to ichthyosis. I finally got diagnosed after several doctors had seen me all of my life, in May 2014."

@2PuenKtchen

"I am 27 from Germany. I'm a special education teacher. Happy, blessed christian girl from Germany. My faith keeps me strong because I know that Jesus is nothing but good. I know that he made me perfect! I am not a mistake. I am wanted.

I love my hair. They are growing since 2 years.

It's such a difference having long hair as a woman.

I love to laugh. I live to be joyful and I have so many reasons foor being joyful: I have the best family and greatest friends."

 

@Bumblebeemick

I'm Brittany - I'm 28 years old. I didn't know I had ichthyosis until I was college every dermatologist I went to said I had eczema clearly I don't lol. Since I was little, my mom made sure to tell me that I was beautiful and God made me the way he wanted to make me. She also made sure I looked in the mirror and tell myself: "I love me". And because of that I truly love myself and am grateful God chose this path for me.

I'm also a lover of fashion. I love to read & spend time with family and friends."

@Kiavvyeh

"My name is Kristin. I am in Alabama, USA where I'm a phd student in composition and rhetoric in English studies.

And... I dream of making higher education more accessible to those with disabilities. That's what my research focuses on, and how I combine advocacy with my professional work."

I love Kristin's dream!

@TinaSmith13

"I'm from Kansas. I have EHK. I was adopted by two awesome people who also adopted my bro who also has a disability.. I work a lot, mostly different photography and make-up projects. Plus a caretaker for a friend with CP. Side work Right now I'm slowly working on a documentary and YouTube project about living with ichthyosis. I do a little modeling gigs. I like to keep busy. :)"

@MissBrianna_Jane

"I am 26 years old, born and raised in Melbourne. I have congenital Ichthyosis vulgaris. I love to travel and try new things.

I work full time and study full time doing my bachelor of business major in event management. :)"

(I met Brianna in April and we could not stop talking. So great to meet her - friends for life!)

@K.Idella_

 

Kelly featured on my blog last year. She's in her 20s and lives in Missisippi. I love the confidence she exhudes. She's developed so much confidence and has been doing a lot of great things to educate people about Ichthyosis, and development her sense of style and self worth. Just recently she did her first modelling show! So proud!

"When you go from, "You're stanky." Or people not wanting to touch you because of your skin. To hearing, "You're beautiful." Or people wanting to meet me because of the awareness I've been spreading. This is the transformation of all times. Skin always been poppin'. Just have the confidence to say it. #YouCantTellMeWhatGodWontDo #SkinOnFleek ❤️😘"

I LOVE THIS!

@RafJonathanTan

"I'm 20 by this Dec. I like playing music and listening to music, I use instagram to connect with friends. I live in Malaysia."

 

@Fiqasani

"My name is Syafiqah. I am 26 years old and im from Malaysia. I am doing online businesses, i am selling scarf and life insurance policy.

I like to explore new things in life so that I can be more adventures in the next time.

I like to buy things online too!

I like to feed stray cats - I am a cat lover. Do check my stray cats Instagram @kucingjalanannn which stands for stray cat 😁

The reason I love Instagram so much is because I can see my families and friends new updates."

I adore Fiqasani's fashion!

Hope you enjoyed meeting them as much as I did.

Also, please note that before trying any treatments my friends have mentioned, talk to your doctor and psychologist. There are many variations, symptoms, appearances and seventies of Ichthyosis and what works for one person might not work for others.

❤️

This is the last post for Ichthyosis Awareness Month 2016. I hope that I have done more than raise awareness, and made you think about acceptance (of self and by others), and the media representation of the condition, and introduced you to some great people. I've got some more posts about Ichthyosis coming year round - thinking critically of course.

You can read this year's posts at:

Ecdysis. Tender soles.

Vereniging voor Ichthyosis Netwerken

How to cope with the emotional aspects of Ichthyosis - advice from people with the condition

Choosing clothes to accommodate ichthyosis

Crystal's video

Using Moo Goo cream to de-scale the scalp

When the media directs you not to google Ichthyosis (and what I'm doing to change that)

Rethinking Kindness - True Blue Hand

Ichthyosis Awareness Month 2016 - we must move past awareness raising

And catch up on the 2013, 2014 and 2015 posts.

Thank you for reading about Ichthyosis again this year - I hope we've moved past awareness.

❤️

I have a favour to ask, please.

You know, I've been blogging for quite some time. Almost seven years here! And I am really proud of what I've produced. There are some great resources here for you - scores of posts about Ichthyosis and appearance diversity that are really helpful. I know this because you tell me. You search for and share the posts, and I'm so grateful. Thank you.

Apart from the very occasional sponsored post, I don't get paid to write this blog. I spend a little money on the blog - online storage, apps, graphics and getting people to edit my posts when I'm really busy. I come home from my day job to write because I love it. There's a lot of time involved in blogging - this post took me four hours. Most posts take me up to five hours. I also manage social media and answer countless questions asking for advice about Ichthyosis and general disability issues. People ask me to help them with blogging and socials media. My blogs are used as classroom and business resources. Sometimes I am asked to edit work or give interviews. These are GREAT OPPORTUNITIES but take time and expertise.

I've been listening to a few podcasts talking about backing ourselves, and asking readers to show us they value our content by paying us what they can afford. So that's what I'm doing today.

I am thinking of setting up a Patreon (crowdfunding) account to support my blogging - so I can continue bringing you quality content, and spruce my online home up a bit. I plan to finally make this a dot com! I can keep writing but outsource the stuff I'm not good at. While I look into Patreon, I've signed up to a PayPal business account (I have an ABN and everything!).

I ask that if you value my work, if it's been useful to you in any way, if it's made you laugh or cry, and can spare a few dollars, you might consider supporting me. Think of it as buying me a drink. (It can be a cocktail, a wine, a hot chocolate or even a bottle of water!)

You can click the Paypal button below and give whatever you can afford. Or share this, tell people about my blog. I so appreciate it. Thank you.

 

 

 

 

 

 

 

 

 

 

30 May 2016

Ecdysis. Tender soles.

I was reading about how angry snakes get when they shed their skin. One animal carer said he observed a skin-shedding snake to lose most of its vision and wouldn't let anyone near him.

The process is called Ecdysis. Ecdysis is a necessary process for growth and movement, and happens to snakes, lizards, turtles and iguanas. These animals go off food, and they're very sensitive to touch during and after the shed. And I expect dinosaurs experienced ecdysis too. Imagine how angry they'd get during a shed?!

Every year and a half or so, my body undergoes a big shed, not just the daily shed. Sometimes it's fully body but usually it is limited to my feet and hands. This shed often means my skin comes off in big pieces - in the shape of my hand or foot. Ouch. (I've written about the big peel here.) My appetite is still the same, of course!

People with other types of Ichthyosis shed big prices of skin more frequently than I do. I'd rather not scrub to peel because it hurts - it thins the skin and leaves it burning. So many different variations, symptoms and treatments for this condition!

Right now my feet are shedding. It's a slow process - it's been happening for about a month. Each time I arch my foot or take a step, I am acutely aware of my skin. My feet tingle as the old skin comes away, making room for the new skin.

The old skin stretches and shrinks. It's like milk skin. Strudel pastry. Thinly rolled pizza dough, before it's been topped and baked. Though not delicious, because it's on my feet.

The new skin is initially soft and supple, but it's a long wait. By the time I lose the thick layer, the new layer is almost as hard as the old layer was.

I don't know what it's like to have skin that isn't painful or scaly. I do know that when my body is comfortable, I can't feel specific organs like I can feel my skin. I asked Adam this question - whether he can feel his skin? He said he knows his skin is present, but it doesn't feel a certain way. It just is. He said he notices his skin is there when it peels.

I feel so aware of my skin - the way it shrinks and tears, and flickers with itches. The way it cracks and bleeds and flakes. The way it stretches over my face in the morning, making me hide away from the world. I'm embarrassed at the way powders all over my work chair - screaming "Property of Carly" - and no, black wasn't the idea colour for a piece of reasonable adjustment equipment. I'm 10 times more embarrassed when it falls below me in the work bathroom, like talcum powder. And it flings all over the shower walls when I wash my body. I wipe it down so it doesn't gross others out. Skin, hey?

When I'm relaxed, my feet are curled inwards, like they're emerging from being bound. There's daintiness in them, but no beauty. They're like half peeled potatoes.

Occasionally I give them a salt bath, and then gently bandage them - breastfeeding pads below thickly applied antiseptic cream cushion my tender soles. And I am a tender soul during this ecdysis.

I wonder what I can do to speed up this shedding process - the fastest way with minimal pain and infection? Can I induce the rebirth of new skin? I have friends who are doing this feet shed voluntarily - putting bags over their feet, then waiting until smooth skin appears. But this is my life, involuntarily. I probably won't use Milky Foot or a pumice like my mum did to smooth her feet in the 80s, or a power tool. I'll just wait, in intermittent pain.

The beauty industry saying we need smooth feet - with all sorts of products on the market to buff, polish, moisturise and preen them so we can confidently wear sandals. Just as well I've mastered the art of pretty dresses, stockings, cute bunny socks and enclosed shoes, then! Fashion makes me happy when I feel like an angry dinosaur bursting out of its skin.

This post is for Ichthyosis awareness month. I realise it's way more information about the medical side of things than I usually share. For more about Ichthyosis, click here.

27 May 2016

Ichthyosis Awareness Month: Vereniging voor Ichthyosis Netwerken - the Dutch Association for Ichthyosis Networks.

My friend Karin from Holland writes for Ichthyosis Awareness Month today. Karin runs Vereniging voor Ichthyosis Netwerken - the Dutch Association for Ichthyosis Networks.

She's doing an amazing job to bring together people with Netherton's Syndrome (the type of Ichthyosis I have) in her country. I love the idea of a support group being run by people actually affected by the condition. And she also told me how the group, plus doctors, are focused on both the physical and emotional aspects of Ichthyosis. So important.

Meet Karin.

Karin from Vereniging voor Ichthyosis Netwerken

"Carly Findlay invited me to write a guest blog about my living with, and work for Ichthyosis.

My name is Karin Veldman, I live with my husband and two cats in Assen in Holland. I am not working anymore, but I spend some time raising ichthyosis awareness. I love knitting, and singing in a choir. I did a study in applying singing bowls for massage. I used to work in a hospital for a mental health.

I have Netherton Syndrome. I had my diagnosis at 39. Before that, I knew I had some kind of ichthyosis, but I didn’t know what form it was. I was born with the condition and I have spend a lot of time visiting doctors. One of them told me to expose myself in a museum, when I asked him if it could be Netherton Syndrome. This still makes me cry. In my younger days, I was bullied a lot, because I looked different. This is leaving scars on and under my skin. Sometimes the memories come back as if it is happening in the moment, called PTSD.

This is Lisette and Nicky.

In Holland, all people with Netherton Syndrome know each other. We were brought togetter in 2009 help a little girl, fighting for her health. Our first meeting was so special, so much emotions were shared. We heard other people tell our story…amazing. We are still meeting each other. In 2013 I wrote the website , also available in English.

Suzanne Pasmans, Dermatologist, immunologist and Professor of Paediatric Dermatology in the Erasmus Medical Center in Rotterdam is leading lady of the Netherton Expertise Center in Holland. Suzanne is pictured below.

Dr Suzanne Pasmans

This Center is doing research on the syndrome. There is a lot going on at the moment. They want to know more about our immune system. They want to know what the protein LEKTI means to our body. Where should it be working? What is missing? We all had to go to a medical photographer. Blood samples were taken. We all visited a psychologist, to talk about our experiences with the syndrome. The Netherton Expertise Team is a multi disciplinary team, they do very good work. They are working hard to raise awareness for European Expertise on Netherton Syndrome.

In December 2015 we started the Dutch patients association Vereniging voor Ichthyosis Netwerken. Now, five months later, we are proud to announce we have almost seventy members. And we are groing bigger. I strongly believe in that. My other board members voted me for president, so now I am the leading lady of this association. But we cannot do without our members. I am so aware of the importance of us doing this, it brings togetter so many people sharing the same experience. We lately had our first Meet and Greet. It was so great to meet everybody. There were a lot of stories, a lot of emotions. Our medical advisors were under the impression of what was shared. They think health care for people with Ichthyosis needs to improve!

Our goals as an association are to raise ichthyosis awareness. We want to know all about other peoples stories. We want to organise meetings, live and online. We have started a facebookgroop Vereniging voor Ichthyosis Netwerken. There is also our website. Our first Meet and Greet learned us about the importance of this. People with Ichthyosis need our support, they need medical support. Everybody deserves a good chance.

On this picture you see, from left to right, Eline (who has netherton syndrome), Eline's mother Anita and me.

Vereniging voor Ichthyosis Netwerken - Eline, Anita, Karin

On this picture you see me and my little friend Savio, and his daddy. My friend Eline was helping at the meet and Greet. She is standing at the door.

Vereniging voor Ichthyosis Netwerken - Savio, Karin

Another goal is to raise a big International Netherton Network, with our association as a solid base. We invite you, to become an international member of Vereniging voor Ichthyosis Netwerken. Togetter, we can make some difference!

This is our handmade mascotte VIN."

Vereniging voor Ichthyosis Netwerken - handmade mascot Vin

Carly, thank you for giving me a chance to write on your blog. Kind regards from Holland."

Find out more about the Dutch Patients Association on their Dutch website, their Engilsh website, the Netheton's Syndrome website, and join the Vereniging voor Ichthyosis Netwerken Facebook group.

This post is for Ichthyosis Awareness Month. Read more about Ichthyosis here.

 

 

 

 

 

 

 

26 May 2016

How to cope with the emotional aspects of Ichthyosis – suggested by people living with the condition.

One thing I can’t seem to find is a resource offering advice on how to cope emotionally while living with Ichthyosis. There is a lot of fundraising money for research and a big focus on raising awareness, which is GREAT, but it's hard to find any tangible ideas for children, young adults and adults to manage their condition beyond the physical. There is a lot of VITAL information about how to maintain the skin and other parts of the body, but maintaining mental health is just as important. The social reactions we receive and emotional impact of living with Ichthyosis can be wearing. This is one reason we need to move past raising awareness – to support the people actually affected. To equip us with skills to take us through our lives.

Last year at the inaugural Australian Ichthyosis Meet, the attendees workshopped some great coping strategies. Most of the suggestions were initiated by children with Ichthyosis. This is SO good – I love that this young generation can provide peer support to others living with the condition – children and adults of all ages, and with a range of conditions, and parents too. A lot of this is pretty useful life advice, whether you have Ichthyosis or not.

It makes me smile to reflect on what a fun time the attendees had – and that children and adults were equal contributors. This is the utmost demonstration of leadership.

Here is their advice - verbatim and gorgeous:

How do I respond to comments and stares?

  • When people stare, I just keep walking, but if someone asks if I’m sunburnt, I just tell them I have a skin condition.
  • I smile at the person and tell them I have skin conditions and end the conversation
  • I say "No see I was born with this skin disorder called Ichthyosis". Also I ignore these stares. Sometimes the best thing to do is just keep going and ignore it.
  • Educate people about the condition
  • Raise awareness
  • By being approachable – eg – tell kids when they ask us, correct people if they assume it’s sunburn
  • Say "there’s nothing wrong with me, what’s wrong with you?"
  • Try brief explanation and walk away
  • Use a business card with information about my condition on it
  • Ignore it
  • I think "I am better than them because I don’t stare and make comments about people".
  • Ignore
  • Walk away
  • Tell a teacher
  • Be nice
  • Invite the child to play
  • Be strong and stand up tall
  • Be proud
  • Just say hello
  • Smile
  • Remember that sometimes people forget their manners, think before they talk and haven’t forgotten to interact properly.
  • Have a happy list
  • Laugh
  • Dance
  • Have fun – jump on a trampoline and play with friends
  • Being unique
  • Have mummy cuddles
  • Playing with pets
  • Funny jokes
  • Quiet time with myself
  • Go to events like the Australian Ichthyosis Meet – make new friends
  • Watch favourite shows
  • Play video games
  • Swim
  • Appreciate a nice teacher
  • Be brave
  • Have pillow fights
  • Do arts and crafts
  • Doing thing I’m good at like netball and dancing

How can I feel good about myself when things get me down?

  • Have a laugh
  • Exercise
  • Guide of concern
  • Think about what I can influence?
  • Gym and friends
  • Gardening and cleaning
  • Being a social butterfly
  • Go shopping and buy really expensive things
  • Get on the phone and vent and vent and vent to my best friend
  • Sleep
  • Laughter
  • Going out with friends and having a good night out
  • Being around people who you know will listen and support you.
  • When I’m upset I go for a scooter ride or motorcross
  • Wash my hair – because I love my hair
  • Being positive
  • Reflect on how far we’ve come
  • Being able to communicate with people who understand
  • Knowing you’re not alone
  • Look on the bright side
  • Eat chocolate
  • Go outside and play
  • Soccer
  • Read a book
  • Coffee with friends
  • Quiet time
  • Travel to tropical places
  • Watch movies in bed
  • Watch soccer
  • Draw
  • Take time for yourself
  • Give yourself unconditional love
  • Talk to friends and family
  • Facebook – sharing and understanding
  • Know that I am not alone
  • Spending quality time with the kids – kicking the footy or playing cricket
  • Do things I enjoy
  • Look at photos of my kids
  • Play with a friend

It’s also so important to have access to a counsellor or psychologist in addition to your/your child’s dermatologist – to support the person affected by Ichthyosis and also the people caring for them. Changing Faces and YP Face It are also great resources for supporting the emotional impacts of appearance diversity.

Have you got any ideas to cope with the emotional aspects of Ichthyosis?

 

 

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