When 38 degrees lost their way

I’m not really sure what the last straw was for me, but I’ve been ignoring 38 degrees for a while now, having at first been a rabid supporter of everything they were doing. They have done some brilliant campaigns in the past, but more and more I started to noticed that what they were concerned about, wasn’t what I was concerned about. In fact, a quick glance at their website shows where their campaigning interests lie:

- The Big Switch (people being ripped off by utilities companies)
- Tax Dodging
- The NHS

I am concerned about the welfare reforms. I am worried about disabled people and the impact that will have on their lives. I’m worried because I am unemployed, on JSA (and have been tactfully told if I don’t find anything soon I will be more or less forced to work somewhere anyway), I identify as disabled (though not affected as not on disability benefits), and I’m acutely aware that at any moment I could become disabled.

We are currently going through what seems to be to be an extraordinary period where things will change in a massive way. It occurred to me that: a) there is no mandate for this change; b) this will affect millions of people in the UK, some now, some later; c) there’ll be no political will in the future to change it back. So we need to fight this now, and we need to be fighting hard, exposing lies and fraud where we can and telling the truth about what the health bill and what the welfare reform bill will actually do to people’s lives.

What is disappointing is that 38 degrees, once so on-the-ball, has now created those campaigns that no longer represent my views or interests. What’s more, they no longer represent the views of a lot of people I know. Yes, people being ripped off by utilities companies is bad but not as bad as disabled people being forced to work for free on a permanent/long-term basis, in return for benefits they should be entitled to regardless. Tax dodging is bad, but there are already other organisations dealing with this, and making more headway than 38 degrees – I am, of course, thinking of UK Uncut and associated regional activist groups. And as for the NHS, yes this again is another thing that needs to be done but it’s also being done in a much better way, by a whole host of other charities and organisations. The NHS story is a huge topic of interest at the moment, so people are already aware of what’s going on.

The other thing that is interesting to note is how much of their campaigning is puff. They want money, and they want signatures. Money to run ads or do something-or-other, and signatures and letters to give to MPs. I hope I am not the only one who can see that this sort of activism has well and truly had its day, and that clicktivism is dying out. If it isn’t, it should be. I’m no expert but I can’t remember any time I had a truly satisfactory response from my local MP or indeed anyone I have written to, asking for them to reconsider their views.

It is kind of sad, really, that an organisation is taking on already-popular and already well-known issues. I would have expected them to take the welfare reform bill to pieces and really go for that, because it is a really big change and will have huge repercussions. Is it possible that they are simply taking the easy way out?

With membership numbers presumably dropping (quick mention on twitter created ire from friends, and a lot of them felt the same as me. I can feel a palpable sense of exhaustion at clicktivism and writing letters to MPs) I don’t expect they will enjoy the popularity they experienced in 2011 this year, somehow.

I’m about as far from ok as it is possible to be, but thanks for asking

This is a post I really didn’t think I would need or want to have to write. I’ve been trying to keep things mainly under wraps, because, you know, that’s how British people deal with stuff. From the outset, though, I’ve always wanted to be totally honest about things on this blog – especially where I think I can help other people. Maybe I won’t be able to. But I kind of hope so.

I’m susceptible to having depression. I briefly mentioned it here, actually. I’ve had it twice in my life. Once, undiagnosed at 14 or 15 – my closest friend died. He was a grandfather figure to me. I wasn’t able to go to the funeral, so I never said goodbye. For months I heard his voice in my head. For weeks I came back from school and thought his car was parked outside my house; that it was all a huge mix-up. I spent a lot of my time crying, unable to concentrate at school, torn up by feelings of guilt that I never visited him in hospital. That my last words to him were probably “I don’t want you here anyway” – how do you live with yourself after that? It was a dreadful, lonely experience and a forced repression of valid grief. I actually made a point of going to see his ashes at the local crematorium in January 2010 – around seven years later. You never really understand how grief can affect people in strange ways until someone close to you dies. Then you find yourself years later, standing in a crematorium, crying, saying sorry to a box of ashes surrounded by family photos. I left the crematorium feeling a huge sense of closure and a weight off my shoulders: Funny how things work like that.

At the time, I didn’t really realise what was wrong with me. I just felt broken. I now know it was depression, because I was later diagnosed (second time) with clinical depression aged 18 when I was at my first university – and my feelings were exactly the same. I stopped going to lectures. I stopped eating. I became a recluse. I hallucinated. I fantasised about how best to kill myself. I cried myself to sleep every night. I lashed out at other people and had so many arguments with loved ones. I went to my doctor’s surgery at home – unfortunately not my actual family doctor, as she was busy. I explained to him I was crying every night, that I felt like I couldn’t cope. He said: “You’re being too hard on yourself.” “You’ll be fine once you settle into uni.” “Just give it time.” I had already been at university for about two months. I was sent home with nothing. I was angry and I went home crying, but I doubted myself at the same time. It felt different to me just being a little bit upset. This felt like more – a deep, soul-destroying sadness that didn’t really seem to be coming from any one place.

I know, more than anyone, that depression is different to just ‘having a bad day’.

I stayed there for a few more weeks, thinking “Maybe I am just being hard on myself!” But it didn’t get better, I just got much, much worse. The solution for me, at that time, was to leave uni. I came back home, much to the disappointment of my family – and myself – at having ‘failed’ at university. [You may then understand why it is a big deal for me to have attained a degree last year - I had been physically ill for most of my time there, and I suffered with smaller bouts of depression - at times, there were days where I just couldn't leave my bed, and I couldn't stop crying. For no real reason.]

Back to 2006: I was put on anti-depressants when I was at home, and I got a job, and worked, and I applied to go to another uni to do a foundation course. It was a really long and difficult time. I finally was off the meds around two years later, in early 2009, when I was at my second university. I didn’t like my dependency on them, and I didn’t want to feel totally numb anymore. It was a relief to finally have control back, and I swore to myself that I would find better ways of coping, and I’d never go back on them.

It seems I might have to break my own promise to myself.

Since I graduated I’ve been trying to get a job, and trying to get some kind of stability that I felt I lacked at uni. As far as I’m concerned, I’ve spent the last three years in suspended animation, waiting for my chance to go and do the things I really want to do. And since June last year the situation has been massively exacerbated by not being employed. I’m actually surprised that I have lasted this long, and been relatively okay, but I think now is the time to admit defeat.

It’s really hard to explain how I feel, because I am having days or small moments where I am okay – or even happy – but it’s all really superficial because there’s a rumbling undercurrent of sincere unhappiness and dis-ease. I think depression is different for everyone. It’s taken me a while to reach the conclusion that it is indeed depression, mainly because this time it’s not characterised by sadness, but by exhaustive, unrelenting anger. It seems to take on a different form each time. In me, depression generally brings out ridiculous mood swings, making me more unpredictable than I am usually. I feel like I am permanently one tiny event away from having a huge breakdown. I’m alarmingly highly strung right now: Like everything is dangling very delicately on a string and I am desperately trying to find some glue to hold myself together.

Case in point… I never cry! But now, before I even know it, I realise my eyes are stinging and there’s a trail of warm and wet tears running down my face. I’ve cried more in the last three weeks than I can remember crying in the six months previous. I am more-or-less constantly furious, consumed by rage. At myself. The world. Everything. I am arguing with people more often than I usually do. I am crying a lot. I am not going out, because I don’t want to just spontaneously burst out crying in front of anyone, or be seen to ‘lose’ it in public. It’s all so horribly familiar.

To fellow sufferers: Please take heart that somebody knows how you feel. I really do. I hope you have a good support network around you, and I hope you recover soon. No one deserves to feel like this.

It’s really draining. It sounds so silly, because it’s nothing really, but I can’t keep putting my everything into the things I write or talk about. I am too invested, too passionate about things, and the emotional turmoil is just not worth it right now. The slightest things are triggering panic attacks, ‘blind rage’ episodes and helpless sobbing. I am of no use to anyone right now. So I’m withdrawing from this sort of stuff for the time being, and I’m going to go to my GP when I can and ask to go back onto anti-depressants. I said I wouldn’t, but I don’t really know what else I am supposed to do.

The time for talking is over: Dose me up.

Disability provisions are worryingly dismal

I always had it in mind to write about my experiences as a disabled student at University but I wanted to wait until I’d totally finished my studying – which I now have.

I’ve been to three different universities. I want to talk about the first one, though – the University of Westminster. By far the worst experience of my life (for several reasons). I worked hard at my A Levels and was consequently awarded a highly sought-after scholarship to study journalism there. I moved to Harrow, North London, to live in halls as I thought this would be better for me in terms of a social life.

When I applied to go to Uni, I ticked the box that specified I wanted to be assessed for the Disabled Students’ Allowance. I’ll explain. I’m high frequency deaf and throughout school I never had any help other than massive hearing aids that used to get ripped out of my ears etc by other children. I was diagnosed when I was a lot older than kids normally are, because I made up for being deaf by learning to lip-read, learning to understand context and deduce meanings from facial expressions etc. Skills that everyone relies on anyway – I was honing them without knowing it. Being deaf was something I ‘just coped’ with. After I had them ripped out, turned up high, or turned off or down by other children, I rarely wore my hearing aids – which generally left me at a disadvantage.

I must explain here that there are hidden disadvantages that come with being deaf, that people don’t really think about or realise. Of course, you miss out on a lot of things. For me, group situations are the worst. I can’t cope with people talking over each other, I can’t hear anything and I find it extremely overwhelming. Being deaf is tiring. You’re constantly reading lips and body language or other signals, constantly trying to figure out what people are saying. I always visualise myself as one step behind other people. Instead of hearing > understanding > responding like normal, I feel like my brain goes hearing > no idea what they said > what did I actually hear > can I make sense of the missing part using context > understanding what they said (or not) > response. You have to concentrate really hard to try and hear and make sense of everything. So it gets exhausting, being in busy social situations, where I can’t let up for a second or I’ll totally miss a hilarious joke. It happens all the time, and then I have to ask, and then they have to explain, and it’s not funny, and everyone’s annoyed because I’m ‘too stupid’ to understand it. That’s the assumption that people make on my behalf when I don’t hear stuff. I’m stupid. I don’t have the energy to explain to every single person that I meet, that I’m deaf. Usually, people overcompensate and over-exaggerate the way they pronounce words. Let me tell you for future reference: exaggerating your lip movements whilst talking louder does not help someone who is mainly relying on reading your lips, because you distort the movements and make it more difficult. The way I live my life now is to just cope with the fact that people assume I am stupid all the time.

Anyway, I felt that by the time I got to University I was old enough to say “Look, I need help with this” and I felt I should be able to get as much help as possible to help get me through my degree. I had my needs assessment done nearby – it’s an interview where you talk to someone about what you’ll need at University (for example, note-takers, special software for your computer, and so on) – and that went well. I was pleased with the assessment, because I felt like the guy had covered all areas, but I remember him asking if I wanted a note-taker, and I did my usual thing of “Well, I don’t know that I’ll need it, and I don’t want to waste anyone’s time…” I was trying to do someone, somewhere, a favour – from my point of view, I wanted to (excuse the pun) play it by ear and see if I definitely needed it or not. I didn’t want special treatment if it wasn’t absolutely necessary. So he put down on my needs assessment something along the lines of “If Sophie feels that she needs anything else she will ask for it – please give her anything she needs”.

Fast forward a couple of months and I’m at Westminster. Without going too much into it, my circumstances at the University were not great. I was isolated, because I was surrounded by overseas students in my halls, and in my classes. I couldn’t really connect with anyone. I started missing classes, struggling to do work, not going to lectures. I rarely spoke to people. Eventually I stopped eating. Somewhere, in the middle of this spiral into what was later diagnosed as severe clinical depression, I realised that I needed note-takers for the lectures. In part because I found them difficult to hear and follow, and in part because I was getting to the point where I just could not physically bring myself to go. Anyone who has experienced depression will realise it is not laziness, it is not unwillingness to work – but when you’re in a bad patch, sometimes getting out of bed is a genuine achievement for you.

I went to the people who dealt with disabilities, and I said to them I needed to have a note-taker because I was struggling to hear in my lectures. I explained everything to them, and I knew they had a copy of my needs assessment so it should be fine. So it went something like:

“Well, it doesn’t say here that you need a note-taker.”
“Oh, I know it doesn’t, but I wasn’t sure that I would definitely need one, because I didn’t really want to waste anyone’s time. I am really struggling at the moment though, I can’t really hear or understand what’s going on and they don’t have hand-outs for some of the lectures.”
“It doesn’t explicitly say that you need a note-taker.”
“Yes but that was before I started University, and I was hoping I would be okay and wouldn’t need one.”
“We can’t give you a note-taker if your needs assessment doesn’t explicitly say that you need one. It doesn’t explicitly say here that you need one.”
“But it also EXPLICITLY SAYS that if I need help, to give me what I ask for! I am asking you for help, because I desperately need it – and it says if I ask, to give me it. I was hoping that I would be okay when I came here but I’m really not, I can’t hear lectures, I am struggling to understand what they’re saying, and my work is suffering as a consequence.”
“We can’t help you.”

After that conversation, I went back to my room and cried in despair. No help whatsoever. And this rejection actually actively contributed to the decline in my mental state. Eventually I left the University of Westminster and got a full-time job. I was on anti-depressants for two years after that, when it eventually was diagnosed (more about that later).

My point with this is that a lot of people who work in those areas – ‘Additional Learning Needs’ departments and all that – don’t actually understand enough about the different disabilities, or the different ways that disabilities can affect people. Why on earth would someone working in a department like that refuse to even consider giving someone help when that person has come to you, almost in tears? I don’t understand. And this is what really concerns me about the current political climate. People with disabilities are generally ignored. They cope, like I did, in their own ways, and people don’t really understand how the smallest things can affect them in a totally different way. Or how they experience life differently. They just get on with living, because that’s all you can do. But when they desperately need the help that they, by rights, should get – the people they go to aren’t trained, or due to cuts, the departments are short-staffed, or perhaps they have been shut altogether. The disabled are among the most vulnerable in society; the most overlooked and misunderstood. It really worries me that the current government seems to have an agenda that seeks to alienate them and cut them off from the help they need the most.

We are failing them.