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.
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