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

Get Me Out of Here!

Notes from Sunday 29 March:

I’ve been away from the internet since 7am this morning; the last time I scrolled through my notifications, checked over the control panel of my blog. I’ve been in class, learning in real time. My hands haven’t touched my keyboard. I’ve been making notes in my notebook, like, with a PEN. It feels, frankly, weird.

Being in a learning environment with all those other souls feels different, too. In a strange but familiar way.  I’m in the first retreat block of the Leadership Programme I am part of. It’s day one, two more to go. I quickly get a bit peopled out, but I console myself with the idea that soon, I’ll have some one on one time with my laptop.
Being off the internet feels weird.

So when I get to my room, (Yes!  Sudima Hotel has free wifi!), I instantly seek out my old friend. There’s a sigh of contentment as I lift my laptop over onto my lap.  Hello sweetheart.  Let’s go exploring…

Except a pop-up window keeps telling me that my usual pages are all, ‘untrusted connections’. It won’t let me validate the security certificates.  Just one option is available on my screen. ‘Get Me Out Of Here’.

Screen Shot 2015-03-30 at 7.36.01 am

But I don’t want to get out of here! I’ve been getting twitchy withdrawal feelings from my internet; my friend.  I miss it. I miss what it shows me, where it takes me, who it connects me with. I keep trying, like a drug seeker after that familiar hit. I’m no quitter.

Then my roomie starts conversing with me. And the conversation captures me!  Before I know it, my laptop is sliding sideways onto the bed. I’m listening. We’re talking, laughing, covering the deep stuff.  Travelling the world and traversing through time.  Connecting like old friends.  That feels nicely weird, too; we are talking about things it would usually take established friends some time to reach!   I close the lid and turn to laugh at something she just said.  We giggle and adjust our volume so we don’t wake up the people in the neighbouring room.

Connecting with real people in real time is exhausting for me. I like respite.  Alone time. It helps me to recharge when I have some solitary time.  So I am surprised that I have spent an entire day, deeply immersed in the learning.  Engaging with all the individual souls in my programme.  Talking, listening, talking, talking… and then come to my room and talk some more. We talk until midnight gives us pause.  My brain is whirring somewhere high above my sleepy self.

A little thought skips through my mind as I close my eyes. How interesting that my ‘untrusted connection’ warning on the internet has left me open to a real and trusting connection in real life.  Kismet. Coincidence.  Connection in a dis-connected, digitally connected world.  I like it when life gives me gifts like that conversation.  To be present is the present.

Goodnight.
And internet? I’ll see you when I get out of here, my old friend. Til then I’ll be immersed in some other kinds of connection …and you won’t miss me at all!