There are not many choices when one is disabled. Accessible routes and tools are limited and often difficult to negotiate (it’s obvious when an abled person is in charge). There are limits on one’s time and energy, because so much of what you could do is drained by a world that doesn’t consider your needs. In order to live my daily life, I don’t have the choice whether to disclose my disability, but must lay the facts out there to be picked over. I’ve found the Internet a haven, because I can exercise such a choice.
(And have chosen to yell about it. I’ll get to that later on.)
I have a chronic illness (well, two, but the first one gets all the attention). Whether you think that society constructs disabilities, society inhibits those with disabilities, or something else entirely, I’m sure we can all agree that disabilities are widely seen as something bad. If you are disabled, there is something terribly wrong with you. As a person with an invisible illness who needs a measure of support from those around her, there is therefore a struggle between disclosure and feeling better, and saving face and suffering. Having lived with the attitude that I am inadequate for much of my life, I’ve internalised the idea that I am defective. It is an astoundingly painful thing to deal with, much worse than any of the effects of my illnesses. I do not say that lightly.
So to talk about it where I didn’t have to – counter-intuitive as it may seem, that’s the stuff of dreams for me. To have made it to a psychological place where I can talk about it, not as something to be dealt with or scoffed at, but simply as a part of my life deserving of acknowledgement, that’s a big deal for me. It’s not a notion I would have taken seriously even a short time ago. I am so, so proud of myself for doing this.
I am referring, of course, to writing about being disabled on the Internet.
So, why did I decide to start talking about being disabled? Well, the Internet is one of the only spaces I feel I can talk. In offline life, residual shame, lack of spaces to talk and society’s willingness to shove people with disabilities under the carpet mean I can’t bear to talk about it more than is absolutely necessary to get through the day. So while I have to disclose medical-type details to certain people, I don’t often discuss my feelings or how being chronically ill has shaped my internal life.
I hang out in the feminist blogosphere and my own blog is mostly about social justice and a little about my life. When starting up, I quickly noticed a deep split in my expression. Because I wanted to keep my illness a secret, I had to leave bits, angles, perspectives, out of posts and comments. I felt diminished leaving out pieces of myself. On top of that, the feminist blogosphere – and the wider feminist movement, and most social justice movements – is notorious for sidelining the concerns of more marginalised women. It was obvious to me that disability was not a concern of many feminist bloggers and commentors. Sometimes an otherwise excellent critique of the US political system ended with ‘that’s lame’. When disability came up on a feminist blog, it was generally only in the event of a death or in relation to reproductive rights. But mostly it was from the great silence that I gathered I was no woman worth talking about. That’s a lonely sort of existence. And I could not abide this state of affairs in this community I wanted to love and settle into as my own.
This is why I’m speaking now. It was a tough thing to do, but I gradually wrote a series called Not Staying Silent. I decided that I would write seven pieces and put them on my blog over a week. I knew there were worlds of pain in me waiting to get out. But how was I to even begin to express all that which I’d kept locked away, not yet entirely formed? Some linguists talk about language as shaping our thoughts. You know when an idea occurs to you while you’re verbalising it? I love knowing something has been forming quietly in my head and is ready to slip into place. So I let my thoughts run through my fingers, seeing what came out.
Maybe my great need to name what was inside me acted as an anaesthetic, because it ended up being not nearly as painful as I had thought. I now think that I’d crossed the threshold of humiliation over to owning my identity as a disabled person. The pain’s still there. I am going to be long in the drawing out of the poison. But I feel a tremendous sense of release. I’m willing to be in this for a while.
Now, I keep thinking of more and more to say. It’s like I’m opening up all the veins I’ve been burying and now I’m spurting bright red freedom. I’ve even been peppering this post with images because I feel that much more in touch with the world; it’s almost sensory. Letting my experiences go onto the page is quite something after years of secrecy and shame. This is tough, on my heart when it’s not on my mind and body, but it is the manner of my restoration and the manner in which I build myself. As I’m doing it, I’m learning about new communities and supports and ideas about what it is to be disabled. It has been very overwhelming to get feedback that, for once in my life, doesn’t diminish me, from people who approach me as an equal. I don’t feel so alone or suppressed.
Sharing is for once my choice. And that feels so very good.
Note: The Not Staying Silent Series consists of Introduction, I hope you know what you’ve done, Claiming the Label, or, conceptualising myself as disabled, Real Problems, Deference, Response and Recovery.