Copping Flak

Today I want to tell the story about when I copped flak for telling it like it is. For telling the truth of life with invisible illness. Sometimes that truth is painful and upsetting. Sometimes it is traumatic. I tell my stories because there are others who cannot tell theirs. I speak up. And sometimes I get knocked down for it.

use our voices

It has been a wrench for me, to spend less time on my blog this year. I’ve been doing a course run for people in the disability sector. It has kept me really busy, and my improving health has increased my ability to be out and about. But I have missed you. This blog is very very important to me.  I was going to say it was a piece of my heart, but the truth is that this blog IS my heart.  My heart for my family, my heart for people suffering with invisible or chronic illness, my heart for our world, my heart for myself. It’s my heart, spilled onto the page, shared with people so that people like me can feel less alone and so that I can, too. Shared because I know how important it is to share the realities of life with invisible illness. I know that, because you beautiful people have told me that.  People who are not sick themselves, and people who are.  People who care. You are an extraordinary bunch and I am glad you came to my corner of the internet.

Publishing out here on the world wide web is a broad platform. Anyone can read your words.  Everyone who does, will read them through their own lens and make of them what they will. Being misunderstood about my heart is a painful thing. But it is a part of blogging.  In that sense, it is no different to being out in society.  People react to you in varied ways.  Not everybody likes you. And just in the same way that invisible illness is overlooked and misunderstood by society at large, sharing my stories here doesn’t guarantee that my heart will be understood.

Last Sunday I awoke to an awful thing.  Someone I respected and had a connection with through my course, had posted about the types of stories disabled people should not tell. In itself, that is just his opinion. He’s entitled to it. But one of my posts was linked as an example of what not to do.  It’s a small thing in the grand scheme of things. But it was a very big thing for me, to have my heart skewered in the public forum that way, in a sector of society I am part of and care passionately about.

People who are disabled due to illness make up the largest portion of the disability community here in New Zealand.  Our stories of disability due to illness are valid expressions of our lived experience.  They are our own. We tell them in our own words and from our own hearts. It is traumatic to acquire disability.  That person called for people with invisible disabilities to harden up. The words ‘portraying ourselves publicly as traumatically wounded’ linked to a post I wrote about dealing with the question
‘how are you’.

Every person in the disability sector has their own unique way of ‘being’. That’s just part of humanity, we express ourselves with infinite variety because we are diverse, because self-expression is the stuff of art, of poetry, of what makes us people. Competing over who has the most valid disability voice is counterproductive to shaping a society where all people are valued equally.  Suggesting as they did, that our unique voices should only be used to tell ‘way to go’ stories, is ridiculous and dangerous. It is the opposite of raising awareness and a worrying call for self-censorship which does not serve the invisible population. We speak out because our voices can be heard when our disability can not be seen.

I was gutted about receiving this flak because it came from within my sub-group of society. I see now that people with disabilities acquired through illness are not necessarily considered part of that group by people who fit a more traditional definition of ‘disabled’.  But we are part of that group. How much stronger could our presence in society be felt if we worked with each other, rather than against?  It seems to me, that the disability sector has a lot of distance to traverse within it’s own community, if we are to ever hope for true understanding outside of it.  How can we expect understanding and acceptance from others, if we don’t practise it ourselves?  Why all the political bullshit?  Must we?  Why can’t we just be kind and move forward?

I thought about putting on a flak jacket and advancing into the fight. I don’t like injustice. I don’t like bullying. I don’t like influential people being mean and thinking that is all just part of a provocative debate. But I can’t build a kinder world by being mean myself.

Instead, I have written to that person and to the people in my course.  I have withdrawn from the programme because I can’t continue there with any joy. I don’t need that course to make a difference. I don’t need to graduate to know that I have something to offer.  I am me, that is enough. So I returned here to my blog.  I don’t write for the people who don’t see my heart in my words. I write for you. I write for me.  I write to shine a light on the things not seen.  I see you, out there. I hear you. And I hope if you are writing your stories too, that you won’t let a flak attack stop you from sharing the things that matter.  And if you are reading the stories of people beneath the radar, keep showing them your support.  We are always stronger, together.

From my heart to yours. x

29 thoughts on “Copping Flak”

  1. Yes!! So well said Rach.
    You’ve nailed it perfectly here, you DON’T need a certificate of external validation, your blog is so great and your voice is being heard.
    To those who don’t get it and want to be snarky – go play somewhere else.

    Keep blogging. It’s beautiful.

  2. I’m so glad you write – for you and for us. What a difficult thing is it, to cop flak, and for that flak to come from within. People call that ‘lateral violence’. You are amazing – insightful, kind, funny, caring, a brilliant writer and truth teller. Keep doing it. That person was totally unprofessional and I’m glad you pulled out (but sad you had to lose joy).

    I too copped flak. I responded to it, justifying myself even when I didn’t need to.

  3. I just don’t understand the way some can only feel better or gain attention is by bringing others down. We all know how humiliating it can be to have negative attention placed on us, without our agreement or knowledge. I think you and Carly are doing such a great job Rachel. Don’t let these negative people get you down.

  4. well said, Rachel.

    sorry to hear about the flak.

    some people really do believe that “harden up” is the only appropriate response to emotions. and/or focus on “inspiration porn” about people who achieve greatness despite disability.

    the day to day reality for most of us can be very different.- limitations, loss and grief.. most of us put great effort into staying positive & achieving what we can.

    compassion is a more appropriate response to all suffering – disabled and abled.

    1. I think so, too Sue. I work hard on positivity and whenever I can do something, I do. But there will always be times when my reality doesn’t reflect positivity because sometimes, life just does suck. I am going to GOMO… get over it and move on.:-) Thanks for your support, Sue. 🙂

  5. So sorry to hear that you have been knocked back, but pleased to see that you are going to GOMO 🙂 I believe in honesty and sharing from the heart. I belong to a Cancer Support Group, and how can we help each other if we can’t share the good, the bad and the ugly. Love YOU

    1. I think sharing is so important Jenny. There have been so many times when I have found comfort and hope and understanding in the words of others and I am so happy to have found a way to do that too. You’re right, the good, the bad AND the ugly are all equally important. Thanks for your love and kindness Jenny. X

  6. Hi Rachel, you don’t know me – I am part of the dysautonomia Facebook group. I want to personally give you sincere and heartfelt thanks for your blog, your self and all the words you write. We can relate, empathise and feel not so alone and like there is hope because of what you share. I’m so sorry this has happened to you but I want you to know that you sharing your words ( and your courage and open-heartedness and service) in doing that, has made a difference in my life and I’m sure, many others. I am so grateful that you give a voice to invisible illness and what it’s really like to live with one. I also admire the grace and integrity with which you have handled this whole episode. We totally support you xxx . PS. I’m so totally thrilled for you that your health is improving!

    1. Wow, Danielle, thank you SO much for taking the time to comment tonight. Your words give me such strength to keep going. It means so much to me when people tell me that my words are worthwhile. Thank you. Thank you for standing up and saying what you have. You are lovely. X

    1. I felt like it was really important to make that statement Sarah, don’t you? We own our stories, we tell them as we want, to whom we want. We tell them for our own reasons and that is perfectly wonderful. What other people think of those stories is their business, their opinions are up to them. But the abuse of trust was very painful to me because I viewed that person as a mentor and teacher. I won’t stop telling my stories, my way, and I hope no one else will. We are just people trying to make the invisible, visible. This is how we do it. With our words.
      Thanks Sarah. x

    1. It bothers me because I am human. I react to it like I would burning my hand. I pull away… then I analyse what happened so I don’t get burned again.

  7. We all have our own stories to tell. We can even share the same invisible illness but have different experiences. So to drag someone else down because their coping mechanism isn’t one we’d use is ridiculously unsupportive. We can almost accept dismissive comments from people who are able-bodied, but when it comes from someone else who is disabled, the cut is deeper, more painful, more damaging.

    I’ve spent most of my life dealing with invisible illness. Many of those years, the enemy had no name, but the detractors did. Some of the detractors shared my name. I’m 47 and have passed out at least once a year since I was 14 and I still get told I’m doing it for attention even though my illness has a name.

    Up until two years ago, I was able to work and to drive, just generally to be more active. From 2009-2012, I was both a full time student and full time employee. Yes, I occasionally passed out in class or at work, but I was considered a badass because I had a known condition and I was powering through, getting stuff done. What happened was that I got my BA in English just before I turned 44 and effectively destroyed my body in the process. But there’s still that expectation that I should still be able to work full time at the very least because I did so much more than that just recently. I don’t want to be the poster child for powering through with a disability and no one gets to make me their poster child. Most of all, no one gets to judge my disability or how I cope with it until they live in my body and experience what I experience.

    Go you, Rachel! Keep telling your story and don’t sugar coat it because someone else doesn’t like the bitter pill you’re having to swallow. A friend of mine likes to tell me “Just because someone else has it worse doesn’t mean that what you’re going through isn’t bad.” She has cancer and she’s quoting my own words back to me. We live our lives and our lives may run parallel, but we each live our own individual lives. We are allowed to do so without explanation or justification. And if we choose to speak up or speak out, it is OUR EXPERIENCE we share in the hope that perhaps someone else suffering out there may hear and quietly say, “Me, too.”

    1. Hear, hear Suzanne!
      I like your sentiments about not being anyone’s poster child for powering through. I like to think of it as, ‘there’s no certificate for suffering more than you have to’. We just live our lives and do our best. That’s more than good enough for me.
      I hope you start to feel better again soon. X

  8. I’m sorry you had this experience. I have also felt the experience of bding told express or implied that I am doing my disability wrong. 😝 It is hear breaking when it comes from disability activists you respect. Great pieces both.

  9. This news made my heart ache. I was devastated that someone would use your work, your beautiful words, in that way. Your words are what inspired my words. Your story is what inspired me to share mine.

    And then I got mad. Who is this guy, that he thinks he can dictate what should and shouldn’t be shared? No one has the right to suppress someone else’s story, or to make rules about when and how it’s okay to tell it. And the fact that the judgement came from INSIDE the circle? So wrong.

    And then I got sad. Instead of encouraging other people with his words, encouraging people to share their stories, like you do… he’s squashing them. I feel sad for him, and for the people he’s discouraged.

    Your writings are beautiful. So poignant. So real. No certificate could change that. You already have what it takes. Your wings are full grown. I love to watch you fly <3

  10. I think this is way more than ‘flak’, this is outright bullying. Citing your post as way NOT to do something when you are on the course he was on says to me that he felt threatened by you Rachel, and that the issue is way more with him than it is with you.

    This is what I glean from your blog – As a person without a chronic illness, what I get is that you are a person who works tirelessly to advocate for those with an acquired chronic illness, that you speak honestly and openly about how you cope warts and all, that you show us your bravery which means we can be brave too. What I take from your blog is that you don’t, not EVER tear anyone down, but seek only to understand and empathise.

    I am so sorry that this has happened, Rachel. I know you were so excited about that course and full of such hope and promise when it began.

    What annoys me is that humanity’s propensity to put people into boxes means that even in the disability fraternity there are ‘classes’ of disability. A person who suffers a chronic illness is not as disabled as someone who is blind, or deaf, or missing a limb. What a crock of crap.

    Keep doing what you are doing sweetheart, because what you bring to the world is EXACTLY what the world needs xx

  11. I’m feeling like a slack friend catching up late in what’s been happening with you. I feel sad that this has happened and you are missing out on your graduation, but proud of you for standing up for yourself and what is right and true for you. You are a true leader and a piece of paper doesn’t make you one. Keep on keeping on beautiful strong woman . Emily xx

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