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.

Living with memory loss

Living with memory loss is infuriating. The perception is that people who forget things are a bit docile, but on your third attempt to leave the house, because you've forgotten something, getting back inside and forgetting what item you forgot- I challenge anyone to not feel frustrated.

See my memory loss, which is linked with my hypothyroidism, is a daily struggle. It's not that I forgot we were meeting at 12pm for coffee and now you've texted me I've remembered. It's that the conversation we had about it is missing, it's completely gone. And it's not coming back.

In the past I've had a range of responses to me telling people about my memory loss from supportive to disbelief, and lots in between and I spent a long time feeling guilty because I believed the misconceptions about memory loss that everyone else does. But having lived with this condition for eight years, I've decided that I'm comfortable enough with this part of my health to make some assertations and draw up some boundaries.

1. Memory loss has nothing to do with intelligence.
Now you may be able to still recall the answers to your A Level Law exam, or your GCSE Math test, and I might sometimes forget to wear underwear, but that doesn't make you my intellectual superior. It gives you a huge advantage in one specific kind of academic examination, but spurnng off information isn't a marker of intellect, it's a marker of an individual's ability to memorize things. What about problem solving, interpersonal skills, developing, creating, applying critical thought to situations? Your ability to recite information is one skill that happens to be frightfully over tested in the U.K's educational system.

2. This has nothing to do with how much I care about things.
I didn't forget to call you or see you because I don't care, contrary to popular belief forgetfulness is not connected with apathy. I do care. I do want to do everyday human things. I am not choosing to forget them. If I could choose what I remembered then I wouldn't have memory loss. To prove the point here's a list of things I recently forgot

-A regular feature on my blog. Several weeks running.
-To drink water for three days.
-To take my medication yeaterday. -What day I was travelling to London a few weeks ago.
-To take painkillers for pain from dental surgery, earlier today.
-My middle names, a few months ago.
-My age, a few days before my birthday.
-How to spell 'critique' when writing point number 1.

3. Memory loss is not helped by condecension.
'Ahh, Pip, you'd forget your head if it wasn't screwed on.' Wow,that's not original or helpful. Nor is it helpful when you make a joke out of me forgeting to perform basic tasks. I totally understand that you feel awkward that I'm disabled in this way and you want lighten the mood, but don't make jokes at my expense, especially about my disability/ies because-

4. I not embarrassed by my memory loss.
I spent a long time loathing myself and telling myself how stupid I was and I worked out; that doesn't help. It took years for my to deconstruct the internalised ableism that we're all socialised into. I felt that I 'should' be able to remember where I put things, who I had made arrangements with and why I was stood in the bathroom with a spatula in my hand. But I couldn't. That is a downfall of my body. That is something I just can't do. And that's O.K. None of us are immortal or undamaged. We're all flawed and human and sometimes we have bad breath or colds or longer term problems. And though it might be terribley embarrassing to you that your friend Pip has come to meet you and is wearing odd shoes, I'm not embarrassed to be human and flawed in this way.

5. Accepting memory loss is a process.
Before I started experiencing memory loss, I thought about my worst fears, one of which was growing old and forgetting people and events and achievements. So you could say that everyday I live one of my worst fears, even if just for a moment. Memory loss is terrifying. I can't explain how much humans rely on memory, if I did it wouldn't make sense. Until you experience menory loss yourself it's not something you think about. But needless to say it's a huge thing to have compromised. And losing it or part of it entails grieving, like all grief mine included a serious stage of denial. I revert back to denial sometimes when I'm feeling unable to cope. Denial is my default an it causes certain behaviours: I apologise for the mistakes I make because of my menory far too much still and try fo hide this condition for other people's comfort occassionally, I call my scary memory blanks 'brain farts' to make others feel less awkward. But I'm getting better at counteracting the denial. And each day I don't tell myself off for losing memories is another day in the process of acceptance.

See, I suppose like any other thing, we try to apply logic to our minds and to our memories. But memories aren't always logical. There is no method or reason in what I forget. There's no rule to explain why I can remember that I have to put a wash on but forget to take it out, why I spent four hours annotating entires for an anthology I helped edit but forgot the editor's meeting. A lot of people I interact with who may rely on my abilities get swept up in this whirlpool of unpredictable memory loss. It can cause a lot of hurt feelings because people take things personally. My memory loss isn't something I dreamt up to excuse shitty behaviour towards you. It's not personal when I forget something, it's not even personal that it causes me to lose memories I need to look after myself. The condition, the scary concequences, the frustration, the denile, the anger, they're all just part of existing. We're all flawed and a broken in some way, right?