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.

Why I'm not running in my union elections

Firstly, I'd like to thank everyone who encouraged me to run in the election & everyone who has supported me in the last few months, those friends who have ferried me to hospital appointments and given their time to listen to me. Partners, who have emotionally supported me & helped remind me who I am at times when I lost sight of that. Comrades and activists up and down the country who inspire me and remind me why we do what we do. I feel privileged to have you all in my life.

I’ve made no secret about how much of a difficult time I've had with Edge Hill Students' Union over the past couple of years. From the destruction of the student council, to poisonous nepotism and the active discouragement of student participation from certain sabs, I've found engaging with my union continually disheartening. I felt consistently unrepresented, as LGBT+, as a woman, as a disabled student. I felt these groups were ignored. After an interaction with a sab who stated that they didn't feel they represented these groups in their first year in their role but didn't feel they 'had time' to represent these groups in their second year, I was horrified, I was dismissed.

I decided something had to change so became involved in my union in multiple ways: I didn't want to be an armchair activist. I took a leading role in rebuilding the non-existent LGBT+ Society, we created a community that was formerly invisible on campus. We did amazing things like being quoted in the universities' anti-discrimination policy, getting our safe space policy union-wide, having Peter Tatchell talk on campus, holding safe space support, campaign, social and educational meetings for students every week.

 We took Edge Hill Students to their first NUS LGBT Conference, we joined forces with the three Liverpool Universities to form Merseyside LGBT Students' Network. We networked with LGBT activists up and down the country and through MLSN I saw what a union that cares about *everyone* looks like. I lead LGBT students on their first demo, we built relationships with LGBT staff & got a gender neutral toilets motion passed at directorate and then held a direct action when facilities management decided to ignore the motion. I hope after leaving Edge Hill that even if for a short time, the work we did has improved life for LGBT students on campus. In this time I learnt just how powerful the passion of a few people can be.

But this wasn't written to brag about what we achieved. The the primary reason I decided during my second year to run for vice president of arts and sciences was because of the way, despite the positive change I helped instigate on campus, some sabs who should have been encouraging and supporting this change, were still dismissive. And there was a lot of work left to do.

In my time attempting to be proactive on campus I tolerated sexist jokes, I tolerated the condescending looks, tones and emails. I even tolerated an incident when three male (cis/straight) men laughed at a transphobic postcard we received during a post secrets campaign for International Day Against Homophobia and Transphobia, because I felt ignorance was their problem. As a result of this me and other students in the society arranged and delivered an educational session on trans* oppression. Of the two remaining staff who first laughed at the joke, the one who turned up made a joke about me attempting to turn him into a homosexual.

I spoke about my running for election openly. I was planning on slating with Kate Jackson, a brilliant woman who is one of our best allies on campus. I received a mixed reaction from union sabs from encouragement, to amusement and even active verbal discouragement from one person! I had fellow students delete me from social networking website because they were running, too. I had other candidates interrogate me about Kate Jackson’s campaign every time they saw me! But, despite the election stress I was determined that minority group students should no longer be made to feel unimportant, I built up good links with the Islam Society and the Christian Union, I attended Feminist Society meetings, and I had meetings with the universities’ head of Equality and Diversity. I decided that with enough energy and passion students on a grassroots level could instigate change themselves. I had decided my slogan, my campaign colours, and my manifesto. So what changed? Well…me.

A fair amount of people on campus know about the fact I’m disabled. I’ve made sure LGBT+ Society has had a regular disabled caucus and that it’s accessible to people with a range of disabilities. Being out about being disabled, for me, is harder than being out about my sexuality. People get used to the fact you’re not straight, but that you’re disabled? Completely different. And there have been huge barriers in participating with the union because of my disability. I planned to change them, I planned to do for disabled students what we had done for LGBT students, and to put disabled students at the center of that change.

So now, instead of talking about what’s wrong with the behaviour of some individuals in the union, I’m going to talk about what’s wrong with me. I recently found out that the medication I’m on which slightly improved my eyes, has stopped working. It’s truly heart-breaking to find out that medicine that has severe symptoms (weight gain, energy loss etc) on everyday life isn’t doing what it should. My eyes are slowly getting worse and because of the symptoms, my hypothyroidism is getting worse. And because of the nature of hypothyroidism my bouts of depression and anxiety are getting worse.

Yes, there are still significant problems with the way some members of union staff feel entitled to treat serious issues surrounding ability, gender and sexuality. But I’ve had to take the decision to step away from the union this year in order to allow myself time to read, time to attend hospital every other week and time to spend with important people in my life. Coz, guys, what is scarier to me than allowing idiots to go on behaving like idiots; is not knowing if I’m going to lose my vision. If you’ve met me, which I’m presuming you have as you’re reading this: you know I care, a lot. And until I know whether or not I will be losing my sight I’m going to direct some of that care towards myself and the important (and often neglected) people in my life. I’m tired, increasingly depressed and I don’t have the energy to keep banging my head against the brick wall of other peoples’ ignorance. I have plenty of other battles and I’m not just politically active on campus, honestly, with the behaviour I’ve seen displayed I feel those individuals need positive change more than I do.

For those of you whose health allows you to run in this campaign: good luck. There are some amazing candidates who actually care, I should know, I was meant to have the privilege of running alongside one. 

Thanks for reading, if you have read all this! And thank you to all the amazing student LGBT, Women's, Disabled activists who remind me that there are people who are fighting for change. I'm going to miss not seeing (pun intended) you as often as I'm used to!