Overwhelm – the perils of living what I am writing about.

There's a funny irony in writing this. I started writing this in mid July. I called for quotes, did some research and expected to knock this out in an evening – writing from personal experience is always quick. Then I got so overwhelmed that I couldn't finish it.

I could feel the overwhelm creep up a few weeks before I became sick enough to go to hospital. My skin was constantly sore, and my head and face pounded with tooth pain. I’ve been overwhelmed because I'm an online writer, and also by seeing the abuse that’s happened to other online writers lately. I became agitated at what I perceived as snippy comments, and at people who invalidated my experiences of microaggressions (more on that in a future blog post). A few months earlier, a former friend had a public dig at me, saying I was too privileged to be severely impacted by my disability, and so I've carried the weight of that guilt around like a falsified diagnosis.

I felt like I was drowning in issues - some that people expected me to fix. Every time I logged onto social media, there would be another disability issue to address, to grieve over. Of course, I don't have to take those issues on, but there’s a certain responsibility as a disabled activist with a media platform to do so. I couldn't breathe.

And then, I did get sicker - a lot to do with the traumatic extraction of my wisdom teeth, and a little to do with the overwhelm I was feeling.

I voiced that I was feeling overwhelmed on social media. It was met with an outpouring of support (thank you). And then a loyal commenter reminded me to be grateful I have a platform to express my opinion (I am so grateful). She went on to remind me that being a change-maker is "not like we are in the trenches, or nurses in an emerg[ency] ward or nursing home, or in court fighting. Let's not take ourselves too seriously people."

Thud. I think it hit harder because I was already feeling overwhelmed.

I have so much perspective. I acknowledge my privilege and recognise that I earn a modest side-gig wage, and am working from a safe place. I'm hardly the light-hearted diary-style blogger I was five or six years ago. Of course, some of my posts are frivolous - I love fashion and I'm such a fangirl. And I must break up the serious with the light-hearted, so I try not to overwhelm readers with only disability and appearance diversity related issues.

But I take my work very seriously. I share my experiences so others don't feel so alone, and for my own benefit of course - so I don't feel so alone either. I want to ensure my opinions are informed, so I research a lot before writing. I aim to share a wide range of perspectives about disability and appearance diversity on social media - so readers aren't just hearing my voice. (Hence the amount of quotes in this post.) I also feel I have a duty of care to those I'm writing and speaking to - because some people are so desperate for medical and emotional advice, and hope.

I also live what I'm writing about. I have Ichthyosis. I have a disability. I live the discrimination and the ableism and the pain. I'm in touch with hundreds with ichthyosis and reading their stories can take its toll too.

It's not like I'm looking at or covering these issues from the outside.

I find it a little worrying that change makers can't put their hands up to say they're feeling overwhelmed. Self care is so important

When I see videos saying Mui and Hunter have a terrifying condition, when I see Jack and Evan's photos misused on Facebook, when I see hate speech below a video about little Evan, and an airline discriminating against a little girl with Ichthyosis, it hurts. When I see pictures of kids in pain in Facebook groups (well intentioned, of course), or their photos being stolen, I get so angry. I cry. I fire off emails to social media heads. I gently educate parents about the impacts of oversharing about their kids' disabilities (which is often met with anger, but sometimes understanding). I despise the way most media companies represent Ichthyosis, and so I rant. I check in with people to see how they're doing after they've faced discrimination. I recommend they see dermatologists and counsellors. I meet with families and individuals (this is a lovely thing!). I worry, keeping strangers' secrets about depression, guilt and grief, being too scared to face the world, even suicidal thoughts. And sometimes I even wish for a cure for this goddamn condition that's so misunderstood. And there's no doubt this impacts on my own health. These are my people. It hurts.

As well as stumbling across stories and photos in my social media feed, I receive calls for help by email and private message. Recently, I’ve been asked to provide advice about constipation that may be related to Ichthyosis, been asked to diagnose based on pictures of sore skin, and asked for suggestions about navigating love when your partner's family sees Ichthyosis as a curse.

I’ve received several requests to tell my story to tabloid media. And I was approached by several aid workers plus a journalist from our national broadcaster and an aid worker in Kenya, trying to reduce the stigma around Ichthyosis.

I endured some was some stalkerish, aggressive behaviour which was very scary.

I’ve also written a few articles on difficult topics - and was torn to shreds by a few people for doing so. While I don't expect agreement on everything I write about, the tone of how people disagree can sting, you know?

I'm not listing these things for you to say "what a hard life". But I want you to know the reality of what I encounter, on top of living with my condition - which has been incredibly challenging. I am living the things I write about.

Prior to my recent hospital stay, I took myself to the hospital outpatients to get some stronger antibiotics and painkillers. One of the senior dermatologists told the resident about my blog, and how it's such a big resource for dermatologists, patients and families. I told the dermatologists about some of the reader questions I've been answering lately, and they reminded me what a big thing it is, and that these questions make me reflect on my own experiences. She was so right. Perhaps what I'm experiencing is vicarious trauma.

Tara Moss wrote about vicarious trauma in her book Speaking Out. She outlined her experience of other people telling their stories once she had told hers in her part biography The Fictional Woman.

"It was a beautiful experience, if emotionally draining... I had not been fully prepared for the outpouring of support, emotion and personal stories from ordinary people."

She went on:

"I could not have imagined that from that moment on, there would be men and women telling me about the child abuse they had endured...there would be readers telling me about the relationships they had fled; and there would be women and girls telling me about the abuse they were currently experiencing in their own homes, sometimes in book signing line-ups, or on the street."

Tara wrote that she "couldn't switch off when I heard these stories as a psychologist or other professional learns to do. I did not have 'office hours' as it were. My exposure to this trauma was random and unexpected.

She also mentioned the vicarious trauma experienced as UNICEF ambassador in Syria - seeing children suffering (even being killed) in refugee camps.

"It's the little details that make you crack. In this instance, it was the reality that over a dozen small children had been electrocuted to death while walking or playing in a particular area of a camp with bad wiring."

I acknowledge Tara's experiences of volunteering in Syria and my experience writing, speaking and living Ichthyosis are different. I'm not in a war zone. I haven't experienced sexual assault. But I live what I’m writing about. And people tell me their stories because I tell mine. That's such a privilege. But it comes with a cost.

The support for vicarious trauma in a professional setting is much better than that for a blogger.

I know others who are affected by being on, by living what they write about - they're from all types of diverse backgrounds. I know women who talk about domestic violence and receive rape threats. A friend survived a terrorist attack and is regularly vilified for speaking out. Another friend talks about racism, which is met with racism. The amazing young Greens member Jason Ball, who champions LGBTIQ rights was recently called a homophobic slur via the defacement of a poster during his election campaign, and responded so diplomatically. These people are I n the thick of it, too.

I asked my friend Dr Susan Carland, Muslim academic and writer, what it feels like to be in the thick of the issues she writes and speaks about. Dr Carland is on the receiving end of Islamaphobic abuse regularly – she decided to donate $1 to UNCEF for every hateful tweet she receives.

"It's hard", Dr Carland says.

"There are certainly times when I feel despondent, and things feel futile, or overwhelming, I think especially at the moment when it's not just anonymous trolls, but elected leaders and well-known media people contributing to the vitriol. I keep speaking about it because I think it needs to be discussed and also because I feel that often people who aren't Muslim are unaware of what is happening. And if people don't know what is happening, it's hard to convince them of the seriousness of the situation."

She told me what she does for self care.

"Having a break from social media, and the media in general helps when everything feels grim. Getting lots of sleep and exercise is another useful self-care tip, and spending time with the good, uplifting people in my life all helps and provides important perspective."

Another friend, Tarang Chawla, Ambassador for Our Watch, White Ribbon and safe steps Family Violence Response Centre, has been prominent in the media since asking a question on Q&A in July. I wondered how he’s coping, because he’s living with a sombre reminder of what he’s speaking out about every day.

Tarang’s sister Niki was murdered by her partner in her sleep on 9 January 2015. She was 23. Since her murder, Tarang has been doing advocacy and campaign work around the prevention of family violence. He tells me it’s "mostly it's an expectation of myself, than from others. I think that because it's so close to home, I find ways to do work that I think is important."

Tarang told me it can be difficult to be vocal, but his strength comes from the memory of his sister.

"Sometimes it can be really hard, but I think about my sister in life, her positive energy and that gives me strength. Behind every statistic about men's violence against women is a human story. Through my advocacy work, I've met so many brave women and children and they're inspiring people. It's the human element that always drives me. I have a platform and a voice and so I use it as much as I can to support bringing about the changes that will prevent violence."

He said he’s not so great at following advice about self care – he thinks he’s better at giving advice to others.

"Having someone to talk to is probably the most important. And becoming OK to talk about it, whatever that may be."

There's that modern-day adage of "you put yourself out there online, you should expect abuse back". I don't buy that. And the overwhelm I am writing about is not abuse. It's the expectation to be ‘on’, and the responsibility to serve the community well. I've also got a mind that doesn't switch off, with about 15 pieces of writing in draft, all quite serious topics.

Michelle Roger who blogs at Living with Bob also knows the overwhelm associated with living what we write about. She told me:

"We live it, plus we hold all the needs of those who write to us behind the scenes, those who write saying they're going to take their life and are at their wits end, That is so taxing and you can't just clock off. Plus the whole if you dare to have an opinion you get torn to shreds."

Michelle empathised with me when I voiced my overhwlem on social media.

"You never have to apologise for saying you're overwhelmed, Carly. You're a human being and entitled to express yourself including when it gets on top of you. You don't have to burn yourself out by being on all the time. Self-care is important and it's what makes it possible to keep going. Advocacy and activism is a 24/7 job and you are often holding not only your own personal issues but also the needs of the multitude who contact you behind the scenes, many in quite dire straits. You can't just clock off at 5pm. Not to mention the people who tear you apart because the latest article you wrote isn't what they wanted to hear. You do it because you love it and can't imagine not doing it, but it takes it's toll. Take care of yourself."

She also blogged about being ‘on’ - living it - last year:

"When I became ill back in 2006 the lack of awareness about any form of Dysautonomia was a huge impediment to finding a specialist and finding a diagnosis. When I tried to explain to others what was wrong, even those who I worked with in health, I was met with a lot of blank stares. With education having been a large part of my then job description, education, awareness raising and advocacy was a logical move as I became a full time patient. I have now spent years doing just that. Not only for Dysautonomia, but invisible and chronic illness and disability in general. I enjoy it and it is a passion.

But what I did not realise was that in becoming ill I was also assigned a secondary job complete with Key Performance Indicators (KPIs) and people would happily and at times aggressively, point out when I didn't meet those KPIs. It was clear I was expected to be ON at all times. And that my workload, as decreed by others, was increasing exponentially.

The problem with being ON 24/7, and I'll admit I did internalise that philosophy and often beat myself up for not meeting expectations, is that I am also a human being. A chronically ill human being."

Michelle, Tarang, Susan and Tara are all advocates of self care. It's something I need to take more seriously, and I have been since becoming so unwell. It's also been good to reflect on the work myself and others do - truly living it - and to acknowledge that it's important and has an impact on others.

When I was at university, I did an assignment on journalism and trauma. I learnt about the Dart Centre for Journalism and Trauma – it’s "dedicated to improving media coverage of trauma, conflict and tragedy." The website has some great information on self care, which could be useful for self advocates and activists of all types.

While I’m not reporting from war zones or writing about assault or murder, telling my own story and writing about wider disability issues carries its own trauma. As long as I'm living what I write about, I will take what I do seriously. And so I must take self care as seriously as I take speaking out about the discrimination, ableism and pain of living with a disability.

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This is what it feels like to be prayed for because of my disability. And it's not ok.

On a recent Friday evening, I finished work with the excitement of a weekend full of reading and cooking. I headed down to my local bookstore on the tram before going home. While I was on the tram, a woman offered me a seat. I smiled and thanked her but shook my head. I was only going a couple of stops.

That same woman followed me out of the tram, into a small shopping mall and down an escalator. As I browsed books, she tapped me on the back and whispered "I followed you here. Jesus loves you, beautiful. Jesus loves you."

This, no matter how well meaning, is not ok. Unwanted prayers are misplaced good intentions.

I thanked her and looked busy.

I could have spoken up and said its not ok. I could have refused. I could have told her strangers praying for me offends me, but this would have made a scene. I could have said I don't believe.

But I remained polite because I was shocked to be followed, and a polite response following "kind" acts like prayers is what's expected of me.

It can be hard to know what to say. I think, even if we do believe in God (or whoever), or demonstrate good values and politeness most of the time, it can also be hard to answer assertively. "No thanks" is what I can muster up but in hindsight I really want to tell them what I feel - that it makes me feel othered, lesser and pitiful. I wish I could drop my guard of politeness to say "fuck off". They've got no idea what my life is like just by seeing me in the street.

Unwanted prayers from strangers are not helpful. They imply I'm less than others, that Jesus loves me even if no one else does, and are self serving - making the pray-er feel good about themselves. They say I've committed a sin and need forgiveness. They put me (and others) on the spot because there's an expectation I'll be nice in response to their kindness.

I wonder, do people pray for disabled and chronically ill people because it makes them feel better about themselves? Because they see us as objects to be pitied? Because they can't interact with us as human beings? A friend said it's because they want to spread the word of God. I guess I can see that - I occasionally recommend a product I like to a stranger in the supermarket. But it's not the same.

After writing about this on Facebook, an acquaintance thought this encounter with a stranger was fine, saying I must have more faith, and that this isn't creepy.

I told him, until someone makes him feel lesser, like he needs praying to be healed, I would appreciate him not determining whether this behaviour is creepy or not.

He went on to say when I was young, I never turned prayers down. He said prayers helped me.

I've never wanted prayers. Not ever.

And prayers haven't helped. Medicine has helped. A great outlook has helped. Increased visibility of disability helped. A supportive network has helped.

I encouraged him to ask my parents (who he knows) how they were treated by so called religious people when I was born. How a church leader came to dinner and told my parents they didn't believe, and that's why I still had Ichthyosis. How I felt so othered at Sunday school and youth group because they used my lack of faith and my parents' colours to justify my congenital condition. How strangers in the street do pray for me and it's made me wonder why I need fixing. How, from a very early age I've never asked for prayers or pity, and have avoided religion - rather ensuring I have strong values and ethics, and a supportive community around me.

My friends with Ichthyosis tell me similar has happened to them, and it's been upsetting.

P said:

"I was recently "prayed for" for the first time. I said yes because I didn't know what else to say. It made me feel ashamed, ugly, like I needed fixing, sad, hurt, awkward, used. I will say no thank you next time. This woman implied that I was less than she was. I didn't tell anyone it happened."

C, a mum whose boys have Ichthyosis, said:

"I once had a doctors wife tell me "our family had been cursed" and thats why my boys had x-linked Ichthyosis she then gave me holy water that had belonged to a dead priest."

L told me:

"I get that too. Apparently 'I am paying for the sins of my ancestors'. Whatever."

And Tonia, who has Cerebral Palsy, has written a great series about the impact of prayers and religion throughout her life. It was a great read - and identified a lot with her experiences. Read that here.

In one post, Tonia wrote about how when she attended a religious conference, a staff member asked her to remove her wheelchair, saying "there's no place for that here", implying her chair is in the way. "The only space for wheelchairs is under the bleachers. Tonia wrote about how that rejection made her feel:

"There are no words in the English language that adequately convey what her words did to me. How they felt. How deeply they wounded. Nearly a dozen years later, the shock is still palpable. The anger that masks the hurt underneath is still quick to rise. To be so obviously dismissed, so clearly objectified and dehumanized at an event I had traveled eight hours and paid to attend made me feel like dirt on the bottom of her shoe. I felt unworthy to go inside. I felt like my disability meant I had to be hidden away, so I did not distract all the able-bodied people who traveled, who paid, who came to experience God here. I felt humiliated and ashamed."

Friends without disabilities have told me they've been the victim of unwanted, inappropriate prayers, too. The prayers have been judgments on their appearance and sexuality. How can this be kindness?

One female friend told me:

"I was 'prayed over' and told that my sins would be forgiven once in a grocery store. My 'crime'? my tattoo. so invasive."

A male friend shared:

"I once had one of those 'do-gooders' tell me that Jesus hates sick homos like me & I should be ashamed!" Sadly my knee-jerk response at the time rhymed with truck off! I would be far more measured in my response these days."

And a mother I know was taken aback when this happened:

"I was followed by one once when I was pushing my son in a pram. She wanted to make sure I was wearing a wedding ring and that I hadn't had children out of wedlock!!"

Kirstin, who also has Ichthyosis (I featured her here) has a different take on prayers. She wrote this recently, and I asked her if I could quote her. She said I could.

"Working at the movie theatre here in Tuscaloosa is for the most part very much like working at the one in Salt Lake. But, there's one key difference. I regularly have people (after reading my nametag) say things like, "Kirstin, Jesus loves you" and "I'll pray for you, Kirstin" or even my favorite "I'm going to pray that God heals you." I have even had one lady ask if she could pray with me, holding my hands through the tiny window at the box office, as she just...thanked God for how beautiful I am. For the most part, I don't mind these incidents, because it's nice to have those reminders of my Heavenly Father's love.

But.

It makes me sad that some of these people can't see that my skin isn't something that needs healed. My skin is different, sure, but it's perfect in its own way. It protects me from cuts, helps me stay safe in crowds, and always makes me look as though I spent hours on my makeup. My skin is beautiful. And Heavenly Father gave it to me for a reason. So, maybe the next time someone says they're going to pray that God heals me I'll tell them...

He already has."

While I'm not religious, I really appreciated her way of looking at prayers and how she believes God gave her Ichthyosis for a reason. And Kirstin's is an example of religion working for her.

I mentioned that I was sore on Facebook last month - before the wisdom teeth and hospital drama. Someone kindly said they're praying for me. I "liked" it, to be polite really. A reader wrote to me asking me what I think of that pray-er. I told her I'm uncomfortable with prayers, but liked it out of politeness. She made me think when she said "but by Carly liking it, others see it's ok to offer prayers". Yes, that's so true. It's only a small thing, but I clicked unlike. I don't want to be prayed for.

Please remember that we often have a lot going on with our disabilities. It can take years to build confidence within ourselves. Some of us might not even be comfortable admitting to having a disability, let alone discussing it with strangers. And so to have people approach us, even through kindness, can shake our self worth. We are just trying to get on with our day.

What can people who want to offer prayers to disabled strangers do?

• Say hello. Always say hello before launching in to what could be perceived as an awkward conversation.
• Don't assume that the person with a disability or visible difference is suffering.
• Get to know the person first, before asking about a condition or offering prayers.
• Help in tangible ways. Ask politely about our disability (after saying hello). Ask how you can help us - make a donation to charity, take the time to learn about our condition, tell others not to make a judgment about the quality of our lives.
• Never assume someone wants to be fixed or healed, or can be cured.
• Never assume people have the same beliefs as you. Don't force religion upon us.
• Don't take offence if prayers are rejected.
• If you must pray for us, do it in private, and don't mention it.

What do you do if someone prays for you? Are you comfortable with it?

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My chat on the Fully Sick podcast

Late last year I met a wonderful woman called Jenny Joy, and she interviewed me for her Fully Sick podcast. The episode aired last month - apologies for not posting about it earlier.

Jenny is such a great conversationalist. I really opened up in our chat - to the point that this needs a content warning about suicidal thoughts. If you need to talk to someone, please contact Lifeline on 13 11 14 or Kids Helpline on 1800 55 1800, or the crisis line in your country.

You can listen to it here. There are lots of laughs, too - I promise. Thanks for having me, Jenny!

Jenny has chatted to some amazing people - all living with chronic illnesses and/or disabilities. Her podcast is funny, interesting, deep and useful. Give all of the episodes a listen. How great to see people with disabilities making their own media!

 

This is what my disability looks like.

 

A bit over a week ago someone who has ichthyosis asked me why I classify myself as disabled, because they don't. They said to me:

"I actually think that this may come across as offensive to some who are who unable to accomplish certain abilities that the average person has no trouble with such as walking for example.... I would like to delve deeper into what you feel nethertons actually disables you from doing?"

(It was a public comment so I have no qualms in reposting. But I don't want there to be a pile on of comments in response to that person, I just want to show how I feel.)

I am well aware that there are people with milder and more severe forms of ichthyosis than I have. But at times - and for a long time lately - my ichthyosis has caused me to be sorer, more isolated and more unable than usual.

This past weekend has been a disappointing one. I booked a trip away with Adam, as a relaxing break from our busy lives. I had booked it prior to having my wisdom teeth out, so could not predict the state of my skin then. I have not been able to be active - most of the time away has been spent in bed, sleeping or reading. I've been wearing pyjamas a lot. I can't hold Adam's hand because my hand hurts too much. There was skin everywhere - in the bed, in the bath, on surfaces I haven't even touched. I brushed it off where I can.

I can feel my heartbeat in my legs. It pounds. They're weepy, scaly and probably mildly infected. I can't maneuver them properly - every step is a challenge - especially over the bath and down stairs. Putting on socks and stockings is hard, and Adam had to help me put my dress on because my hands and wrists hurt from the fabric.

I've been asking Adam to open and pour me water because I can't grip the bottle, and he's been bringing me things to bed so I don't have to get up.

I told Adam I'm scared, this is the sorest I've been in a long time. I told him I'm sorry. He hugged me for a long time.

My skin has suffered a shock from the wisdom teeth extraction. It often does after medical treatment, stress and even excitement. It's so very sore, and honestly, if I could take a cure pill for the pain aspects of the condition right now, I would.

There's the stares and comments too - not so much during this weekend because I'm hibernating, but they're constant and similar to what my more visibly disabled friends encounter.

I've not always identified with having a disability - it has only been in recent years. The word was a slur, I wasn't disabled like them, I'm ashamed to admit to my previous internalised ableism.

But through meeting and working with others with disabilities and chronic illnesses, I saw I have more in common than I thought. And since identifying as having a disability, I've developed a bigger perspective. A sense of pride. Researched disability politics and history. I belong to an amazing online and offline community. It's brought me many opportunities in writing, speaking, running events, awards and being asked for an opinion by the media. And I'm not as reluctant to ask for help when I need.

I carry a lot of guilt - especially around getting the rest and treatment I need instead of going to work (I feel I'll be letting everyone down if I don't go). I feel guilty for spending time in bed when I look like I could be up and about. I worry I'm not doing enough for Adam. And comments like this one also make me feel guilty - guilty for not being disabled enough, questioned in my own community.

It doesn't matter if I identify as having a disability and others with the same condition don't. I don't have a parking permit or get the disability support pension. I work full time and then some. I don't use a wheelchair. I am not neurodiverse. And I don't resent or question those who do get these things (they're definitely not privileges nor things to be ashamed about). But the very questioning of my identity as a disabled person is damaging. I wasn't going to explain it, but now I have.

Disability is complex. It doesn't look typical. And it's often the physical and attudinal barriers that are more disabling than the diagnosis.

(The comment was in response to this post. You can read the full comment here.

I also wrote this piece about embracing labels last year - it might help you understand disability identity more.)

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This is how it feels when you say “I don't see your disability”.

When you say "I don’t see your disability", you think disability is below me.

When you say "I don’t see your disability", you don’t think I’m disabled like "them".

When you say "I don’t see your disability", you’re not comfortable with disability.

When you say "I don’t see your disability", and you’re trying to focus on all my other traits, that’s ok, but please don’t forget it’s as much as part of me as my brown hair, sense of humour, sexuality, and my passion for food.

When you say "I don’t see your disability", you don't realise your good intentions can still be harmful.

When you say "I don’t see your disability", you often use disabled slurs and think it's ok to do this.

When you say "I don’t see your disability", you don't see that you and I have different experiences of disability.

When you say "I don’t see your disability", I see your perceptions are shaped by inspiration porn and negative stereotypes. 

When you say "I don’t see your disability", you forget I have specifc needs to ensure I'm comfortable.

When you say "I don’t see your disability", I feel you're in denial.

When you say "I don’t see your disability", you believe disability is a tragedy.

When you say "I don’t see your disability", my type of disability doesn’t fit into your narrow box.

When you say "I don’t see your disability", you regard disability as a slur.

When you say "I don’t see your disability", it is silencing.

When you say "I don’t see your disability", you don't acknowledge the richness of disability culture.

When you say "I don’t see your disability", you don’t see that I am unapologetically proud of my disablity.

When you say "I don’t see your disability" and avoid describing my face as red, you think I'm not comfortable with the reality of my appearance.

When you put "disability" in speech marks, or make air quotes when referring to mine, you are silently adding "so called" to it.

When you say "I don’t see your disability", you have an attitude similar to colour blindness. Just like colour blindness is racist, not seeing disability is ableist.

When you say "I don’t see your disability", you are diminishing my experiences of pride, community, pain and discrimination.

When you say "I don’t see your disability", you don’t see the whole me.

When you say "I don’t see your disability", you erase my identity.

I don’t want you to use euphemisms when referring to disability. Say the word.

I don’t want you to stare, point, ridicule and ask questions before you've said hello, but I don’t mind if you talk about my disability politely after you've gotten to know me.

I want you to see my disability as a part of me.

Because, when you say "I don’t see your disability", you invalidate who I am. 

I asked this question on Twitter, and here are some responses.

(Image description: red, curly-haired woman wearing all black, sitting at a table, looking into the mirror.)

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Meeting Tara Moss and being empowered to tackle online abuse in real time.

This blog contains a censored naked photo and some aggressive language. I've posted the screen shots at the bottom of the blog so you can read the whole post and skip the nasty stuff.

If you need to talk to someone about online abuse, phone Lifeline on 13 11 14, Kids Helpline on 1800 55 1800 or 1800RESPECT or visit ACORN. You can also contact police on 000. Google the relevant authorities in your country,

 

A couple of weeks ago, I saw Tara Moss in conversation with Berry Liberman, the Dumbo Feather editor. It was part of Tara's book tour for Speaking Out - her latest handbook for girls and women. I'm a contributor to the book too!

The conversation was so smart, funny and engaging. Tara is a delight - she really knows her stuff, but is humble, and she wants to give others a chance to speak out too.

Here's a summary of the discussion, taken from my live tweets during the night.

Tara said said Speaking Out was needed to get to the bottom about issues she was constantly being asked about. She said her previous book tour for The Fictional Woman became a speaking and listening tour, hearing about tough stuff from women. The attendees of the tour asked her for this book. She wanted to give a lengthier response than a 140 character tweet. She encourages readers to use Speaking Out as a handbook. She wants readers to highlight it, scribble on it, tear pages out, if we want. "Make it your own."

Tara said women receive bullying that silences them, the type that pushes them out of the game. Sexism and racism is alive and well online, becoming normalised behaviour. Women speaking out are fatigued due to online threats and bullying. "If we let bullies win, we are all in trouble".

She reminded us we have the right to report abuse and threats, and ban and block, and call police if needed. Or, "put on the red steel if that's what works for you" - on the power of lipstick.

Tara spoke about the sexism she's encountered. In 2002 had to take a polygraph test to prove she writes her own books. Apparently a model turned author is not possible? She said the sexism she's experienced is prevalent for all women, especially around career. "The question 'can you have a career and have a family?' Is not a question that's ever asked of men", she said. Interestingly, when I tweeted this, a man jumped in defensively about his role as a father, not knowing the context of my live tweeting, I guess.

She said said before blogs and social media, everything about her was written by someone else. She didn't have a voice. But now she does. Tara wants to allow space for others to speak, particularly those not represented in public life. Speaking Out was written to encourage those who weren't invited to speak. Tara said she feels like a reporter, using her profile to do what she can to give voices to individuals and causes. But she never wants to speak for someone. "it's important I don't speak for refugees, because that happens far too often."

Tara cannot be an activist on her own. It's a team effort. Agreed. I can't either. Much the feedback activists receive is often the same, common language. It's often criticism about an activist's appearance, intelligence, weight, or telling us to take a joke. Never about the issue itself. "Fun but depressing", Tara said, likening it to "anti feminist gaslighting bingo".

She regularly reaches out to those she's never met - asking if they're ok after they've written a powerful article and are receiving criticism and threats. This has been my experience - Tara has often messaged me to ask if I'm ok.

I found it interesting to hear about the boundaries she sets for herself when using social media. She never uses her electronic devices in her pyjamas, in the bathroom or in bed as these are private spaces. She doesn't want to invite unwanted guests into these parts of her house, so that's why she chooses not to use social media in these contexts.

Through sharing her story, many people offered support and shared their stories (which is a privilege), but she has also received rape threats. At this time, Berry raised the story about the woman who responded to an unsolicited dick pic by sending a dick pic. Tara said dick (penis) pics online have been normalised, and if law enforcement doesn't intervene, we are saying it's ok. (Hold that thought, and see what happened to me later in the night. Keep in mind I was only summing up Tara's talk, quoting verbatim at times.)

Berry and Tara spent some time discussing Tara's role as a UNICEF ambassador. Tara wears many hats and she takes her unpaid ambassadorial roles just as seriously as her paid roles, spending time researching and talking with relevant people. Last year, she spent time in Syria refugee camps. Around her, families - including children - lost their lives due to unsafe living conditions. She tried to keep strong in front of the children. "It feels like a gross luxury for me to be crying in front of kids". Tara said she gets disappointed with herself when she shows her vulnerability. But she keeps that short, because it's not useful. It's not surprising that with Tara's caring nature, her five year old daughter is too. When Tara's daughter sees her crying, she asks if she wants a cup of tea, and gives her a tissue. "We need more people in the world to tell people they don't need to stop crying", Tara said.

Humbly, she said she doesn't knock it out of the park every time. "No one is perfect." Tara went on to say that when a woman or member of a marginalised group "screws up", it feeds into our unconscious bias about that group.

At the end of her talk, a number of people stood up and asked Tara questions or told their story. A young woman said that she's only just starting to own her vulnerability, that people assume she's happy because she's smiling, and that she doesn't need support. She was so brave, speaking about her mental health and not being afraid to let the room see her cry. Tara replied: "you cannot tell by looking at someone how happy or healthy they are, or how much support they need."

She was asked whether Speaking Out was a book for men, too, or only for women and girls. Tara said she was told to write Speaking Out by hundreds of women. "men can still buy the book too. Kudos to men who have read it". She shared a quick story of how it took a man to put his hand up for a woman to be heard. She encouraged men to "call it". Call out sexism and being ignored & lack of diversity. "Allow the space to have the microphone handed to them."

And then a strange - but not surprising, given the talk - thing happened. I refreshed my Twitter feed after live tweeting the conversation, and up popped a dick pick. Woah. So creepy.

I quickly showed my friend Annie, and we gasped. I gingerly put my hand up and said I've just received a dick pic after live tweeting. I told Tara and Berry this was the first dick pic I've received, even before my husband.

Tara smiled, with a glint in her perfectly made-up eye. "Let's take a group selfie and send it to him." So we did. She encouraged us to make a gesture to show him what we thought of his dick pic.

I tweeted the picture with this caption.

Hey @BigDave0066 we all just saw your dick pic. This is what we think.

When I replied, telling him I showed his photo to others (I didn't retweet it, but showed it to Annie and Tara, and it was public, duh), he became aggressive.

"@BigDave0066:

@carlyfindlay keep my pic between us bitch, just rate"

I felt empowered to share all of his abuse. Because this is the language Tara Moss talked about. Man sends dick pic, then: "you didnt show anyone, did you bitch?"

I told him:

"Sorry, Tara Moss! Dumbo Feather and 220 women have my back."

He kept at it until I blocked and reported him. A few people said this was a bot account, and perhaps it was, just scanning Twitter for mentions of "dick pics". Whatever the case, the tweets were designed to abuse women.

This sense of entitlement and the intrusion from him was confronting. He sent me a photo of a naked man (it might not have been him), unsolicited. I never asked for it. I never suggested I wanted one. I was never provocative. I never knew he existed until his pasty white, podgy, naked body came up in my Twitter feed. Aggression followed the photo. It absolutely confirmed everything Tara spoke about.

I've been immune to this type of abuse until that night. But friends receive sexualised photos, rape threats and death threats regularly. This is not ok.

It was awful to receive this photo - this gender focused, sexualised abuse. But at that moment, being in a room of mostly women, led by an amazing feminist, I felt very safe receiving online abuse. It was a moment of solidarity. I was empowered to tackle online abuse in real time.

And I'm so glad this was the way Tara Moss and I met for the first time. What a story to tell when we catch up again. We hugged, she signed her books for me (I bought Speaking Out for my Mum) and then we had photos. Such a lovely woman.

-

Here's what went down on Twitter.

 

 

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

 

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

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

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

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

 

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

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?

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.

Did you like this post? Did it help you? Please consider buying me a drink!

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.