Wednesday, 4 December 2013

Why I came out as disabled.

My journey to coming out as disabled started in 2007 when after a long struggle with severe symptoms of tiredness, weight gain, confusion and memory loss; I was diagnosed with hypothyroidism. As many of you will know, tiredness when connected to illness canbea horrifically traumatic experience. It's not like yawning and deciding to sleep, it's like fighting sleep off day after day. It's sleeping for twelve hours, waking up and feeling exhausted again before you've brushed your teeth. Everything is greyer, further away, tiredness is like a blubber that separates you from the fun, from living.

When framed like that, it makes me wonder why anyone would ever put off seeking medical help for a year. But we all do. Why would someone allow themselves to be lost within a condition? Because that's what happened. I lost most of my personality inside those symptoms and the culmination of how I dealt with them, and if I'm perfectly honest, I'm not entirely sure I got all of it back. Who can crack jokes when they can't remember the end of their sentence? Who can smile when every interaction is such an effort that you begin to resent those who speak to you?

It took a lot of thinking to understand why I subjected myself to this, but I reached a conclusion- internalised disablism.

See for the most part of my life I grew up in a house hold with my Mum, who supported both of us. My Mum has worked my entire life and I can't remember her having a day off, for illness,beforeI was sixteen. She couldn't get ill because her being ill meant being short on the rent, me being ill meant a baby sitter's billwecouldn't afford; ill meant failure. Illness was something to be powered through.

This survival technique coupled with disablism ingrained in ourculture (e.g. people with physical disabilities used as the butt of jokes, people who experience mental illness being represented as murderers) lead me to tell myself repeatedly that I couldn't be ill, because that would mean failing my A Levels.

So, the anxiety & depression over the prospect of failure (and the misery caused by the condition) lead me to find other ways to propel myself through my course and my social lifewithout 'failing'. Mainly narcotics & alcohol (and dangerous relationships to acquirethem).I was living with eight other young people in supported accommodation so there was never peace and quiet. I was out the house for twelve hours a day attending a college with the most unsupportive 'support staff' imaginable. I was using drugs to see me through the weekend and still managing to pass my course. And that was going really well until I started having to hide fainting fits, experiencing hallucinations and paranoia and was admitted to hospital with what was a series of 'accidental overdoses'. The culmination of this behaviour was a mental breakdown and I don't think I have the adjectives to describe that experience to you.

The last time I had to go to hospital for symptoms caused by drugs I finally saw myself for what I was; the same old girl but without the light, without anything but bags under my eyes, a hospital gown and nowhere near enough money to get home. I thought to myself 'I could die right now'. And because that scared me, I knew there was a spark of me left: a spark of me worth fighting to keep.

I'm still fighting for that spark today, I suppose. Everyday is a fight: Disablist external and internal voices telling me that being ill is failing vs. the truth.

To explain what that truth is I'll have to talk about another diagnosis. After being diagnosed with hypothyroidism, depression, anxiety, and seeking help for my addiction, I stilldidn't self- defineasdisabled.For me to claim that term, we have to talk about 2013. In my final year of university, I was seeking medical help for posterior uveitis and macular edema. I was losing vision rapidly and for the first time in five years I felt I was losing the battle with internalised disablism. It was then that I realised that one person isn't enough to fight disablism. Not even close. We each have our limits and our abilities and I wrote a statement about mine in relation to our Student union elections. This is probably the first time I recognised my limits as a disabled person.

Disability to me is not a special criterion, a measurement of ability, or a term reserved for those who are ill 'enough'. Because the truth is that there is no illness small enough to ignore and no role so important that health can be side-lined. Disability is the absence of abled privilege. I don't have the privilege of being able to control my body weight as others do, of being able to see properly, of being able to write and speak without mistakes, of being able to effectively usemy working memory, of being able to use substances recreationally,ofnotbeing depressed and anxious. The expectation thata person cando allof these things is socially constructed and maintained, and because of this, disability is a physical and political identity.

In the movement and activism against disablism and able normativity I found that self-care and peer support are essential. NUS Disabled Students Officer, Hannah Paterson, offered me support and understanding following me coming out about my condition, and I think that was the first time in a long time I wasn't scared to be seen as weak, because Hannah and other activists find strength in admittinglimits. What followed helped me to do the same. Other disabled activists rallied round to help with the things my disabilities prevented mefrom doing and I think the power of that network is a huge factor in me being here today, relatively unscathed. I need and deserve a network of people who share my rage, fight and principles of self-care.

Before disability I was just someone who couldn't see the PowerPoint, someone too scared to leave the house sometimes, someone whose life was a process of rebuilding, relapsing and ignoring. Before disability I was acting out of fear of 'failing' socially and academically but I was failing myself. Before disability I was losing myself, I was killing myself.

And now that I have claimed the word disabled with all its power, history and support?

Now I know that strength means asking for help.

Now I'm proud to be disabled.

7 comments:

  1. what the fuck is wrong with you?

    ReplyDelete
    Replies
    1. http://www.mayoclinic.com/health/hypothyroidism/DS00353
      According to mayo clinic it is. Maybe you should use google next time instead of discrediting life experience and using overly sarcastic ellipsis.

      Delete
    2. also Macular degeneration which is vision loss which is definitely a disablity. Jog on sweetie.

      Delete
  2. congratulations on becoming disabled

    ReplyDelete
  3. very nice information

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    ReplyDelete