Wednesday, 20 January 2016

On welfare reform, and those who matter.

Content note for suicide

These last few months have seen some good campaigning, particularly from all sectors around the proposed tax credit cuts. Whilst they weren't reversed in their entirety, I do believe that the work from trade unions, Labour, and other charities and campaigning organisations definitely helped this.

But take ESA cuts.

What is ESA? It stands for Employment & Support Allowance, and is the disability benefit for those of us who are too unwell to work due to disabilities and long-term health problems. When you apply for ESA - an incredibly stressful, over-complicated and difficult process, you usually are called for a Work Capability Assessment. 

Initially brought in under Labour, the coalition government outsourced the WCA to ATOS, a French IT company. ATOS were so bad at their job - to assess ESA claimants to find out if they were fit for work or not - that appeals skyrocketed, costing the government (aka the taxpayer) a shit tonne of money in processing appeals and eventually backdating lots of claims. There were many headlines detailing tragedy after tragedy of people who had died by suicide, usually after being found fit for work and being overcome by despair at their (sometimes inevitable) homelessness and poverty. Some claimants aren't put through a WCA, but this is rare.

Once you have your WCA, you're assigned a group - the work-related activity group, or the support group. The idea behind it is that those who are in the work group may have limited capability to work, but will be able to do some form of 'work-related activity'. The support group is for people who are less likely to be able to return to work in the near future. 

A few months ago, the Tories announced they were cutting the benefit for people in the WRAG group by around £30, to bring it in line with current rates of Job Seekers' Allowance. In April 2017 the rate for those in the WRAG will go from £102 to £73 a week. This will reduce the yearly income of a person in the work group from £5,000 to just £3,500. The government's reasoning is that the money given to someone in the WRAG isn't a good enough incentive to get back to work. Of course it has nothing to do with an overstretched NHS, local authorities being stripped of their funding, and mental health services under resourced about to collapse. Of course those things have nothing to do with why a disabled person may not be able to cope with employment.

If this wasn't bad enough, more shit has been announced in relation to Personal Independence Payments, which were brought in under the coalition government to gradually replace Disability Living Allowance. For more information on what that's been like, read this (by Liam, on what applying for benefits is really like), this (by Liam, what it's like dealing with ATOS) and this (by Becca, and what pushed me to write this post).

This post from Disability Rights is pretty informative - a judgement has recently been announced, meaning that if someone with severe psychological distress cannot leave the house or go somewhere unassisted (for instance, due to severe agoraphobia, or panic attacks), they'll no longer be eligible for the mobility component of PIP, which currently stands at £55 or so a week. 

So what's the point of this post?

Firstly, to give an explanation of (some aspects of) ESA, and an insight into how difficult it really is for people to survive on this benefit. Most people don't know the intricate details - and why would they? Unless they know someone who receives it, it isn't a great surprise.

And then there's the issue of stigma. 

Who would you tell that you're trying to live off less than £5,000 a year? You'll probably receive some housing benefit, but that won't be enough to cover your rent anyway, especially if you live in London. You might get DLA or PIP, but you live forever in fear of new reforms being announced and the small benefit you get (which, rather than being spent on the extra costs of being disabled is probably spent on heating your room and paying your water bill) being cut. If you've kids or people to care for, you probably worry about making sure you can feed them, too. If you don't have anyone to care for, like me, you're one of the luckier ones. 

When someone asks me what I do, I generally tell them the truth. Or a half truth. Partially because I think that I have a duty to, because it's so shameful. I need to make it less shameful. I need people to look me in the eye when I tell them I live off the state. And for the most part, they don't. They glance sideways, awkwardly, look down at their feet. They don't know what to say. And I try to continue the conversation as if nothing has happened. But it's hard. And it's exhausting when this happens frequently. And it does, because I try and do something social at least once a week, and that inevitably leads to meeting new people who ask what I do.  

What is most difficult about being in this situation, is how isolating it is - both on a personal and a national level. When tax credits were being cut, everyone was up in arms - including almost all of the media, which felt like a first. And I was glad, I really was. 

But when it comes to disability benefits being cut, we don't get much. We get a few Guardian articles, a few MPs ask questions on a Wednesday, but it doesn't go anywhere. It's accepted, passively. It's not worth the fight because we're not worth the fight. Our lives are not as valuable as the lives of people who can contribute to the economy, the people who pay taxes, the people who teach and educate and heal and work on our public transport and in our banks and in our shops and our taxis. Of course, the government is currently trying to dismantle the hard-won rights of those working in the public sector, but my point still stands.

We need you - the activists, the politicians, the councillors, the workers, the trade unionists - to fight for us, because so often we can't fight for ourselves. We want to, but we can't. So much of our energy is taken up just by trying to survive. And when it comes to the end of the day, we don't have much left to give to activism, even though our lives depend on it.

So please, in 2016 make the conscious decision to try and raise the profile of issues like ESA reforms and housing benefit cuts and PIP changes, and give us a platform when we have the energy to talk about it. Please make a commitment to fighting for the right of every disabled person in the UK to be able to live a life with access to healthcare, safety, and dignity. Because we can't do it alone, and as each day passes another disabled person loses their fight, and it feels like soon there will be none of us left.  

Monday, 11 January 2016

I am still trying to choose life, but it's hard.

CN suicide, eating disorders (specifically mentioning purging - but just a mention) 

It has been almost two years since I've written a post on this blog.

Tonight a status from a Facebook friend on university, isolation, loneliness and mental health made me think I should try and find some words to talk about what's going on with me right now.

I'm supposed to be finishing my master's degree in August. I moved to London for this. I uprooted my life and got on a plane to go and do a degree. But I had to defer every assignment last year. I haven't even started an essay that was due last week. I wanted to finish on time, but I don't know if I'll make it. At this point, I just want it over with. Depression sucks every little bit of joy from the things in life you care about. I don't want to write about feminism, and I don't want to write papers and go to classes and have debates and think about Life After University, again. Like with my undergraduate, I have few friends in university. The false sense of security and hope I began to accumulate last year has broken into pieces now. I feel like an outsider on my own campus. 

I am on a steady diet of painkillers, anti-depressants, mood stabilisers and benzodiazepines. I make myself get out of bed, at least three or four days a week, before 10am. I eat meals regularly, for the most part. I spend most of my time alone. I tell the voice in my head that there are no such things as safe foods and unsafe foods, that all bodies are good bodies, and that I will not put my fingers down the back of my throat even though it's all I can think of doing. I don't eat a varied diet, but at least I'm eating. Most of my meals are cereal or pasta and pesto. I spend too much money on food out.

The doctors tell me I am Coping Very Well. That there is nothing they could tell me to do that I don't do already. I take my medication, I eat, I sleep, I get out of bed, I shower, though not as much as I should. I see friends. I have a partner. I am close to my family. I have interests outside of my degree and I am about to start long-term individual psychotherapy. They are uncomfortable when I talk about the impact that being poor has on my mental health. My DLA plus my housing benefit does not even cover my rent. Over two thirds of my income goes on my rent. They do not like talking about money and they know very little about benefits. 

I continue to burst into tears at inappropriate moments. I've cried too many times to count in London Bridge station, when staff have been rude and dismissive and I'm in such agony that I can barely walk, never mind take the stairs. I've had panic attacks in bars full of people enjoying their Friday night, I've left events early because I'm suicidal and I've cursed the Jubilee line for being safe and having tube barriers at every platform. 

I am exhausted and I am anxious. I am in need of a higher dose of my sedative, but need to wait to see a psychiatrist. I keep committing to things, and then hiding in my room for a few days instead. I have started to avoid looking at my emails. I always have twenty tabs open, always have a list of things to do. 

I need people to be patient with me. I'm forever needing people to be patient with me, but I really mean it this time. Living with depression and anxiety is an experience common to many. But living with complex and severe mental illness, combined with a chronic pain and fatigue disorder, is different. 

My world has been grey for quite some time, and I don't know when the colour is going to come back into it. The cliched phrase 'you never know what someone is going through behind closed doors' comes to mind. 

I am still trying to choose life, but it's hard. I cannot see the end of the week, never mind the end of the year. When I turned 23 a few weeks ago, I sat awake in bed at midnight in disbelief. When I was 17 and returning to my A Levels after several months off, I told myself I would be dead by my own hand before 20. I simply did not want to be alive for much longer than that. And while I'm still trying to keep myself alive, I cannot express in words how difficult a task that is. 

Someone I follow on Twitter posted a graphic a few weeks ago, with the caption 'I imagine that this is what people who experience anxiety & depression must feel like'. I don't know this person, but they're a good few years older than me, at least. And I could not get my head around the fact that they had made it to that point in their life without experiencing any kind of depression. I cannot imagine a life like that. I daren't, because if I had lived a life without anxiety and depression, I cannot even begin to imagine the different place I would be in. 

Rather than ending, as so many posts like this do, by telling people who feel horrific what they should be doing, I'll give a few suggestions of what you could do to better support your chronically ill and depressed friends.

- Mental illness and ableism is part of a wider system of structural oppression in society. Do not forget this. Do not divorce this from your understanding of mental illness, stigma and treatment. There is a reason more black men are given medication rather than therapy, are sectioned at a much higher rate, and often given incorrect diagnoses of schizophrenia. White supremacy, sexism, homophobia, transphobia, Islamophobia play a massive part in why those who are unwell are prevented from getting better. The world is not built for people who are mentally ill, and it is doubly not built for those who are mentally ill and queer, mentally ill and black, etc. 

- Make it a regular part of your routine to tell the people in your life who you love that you love them. Normalise it. 
- Check in regularly with your depressed and disabled friends, and cut them some slack when they snap at you, or turn down your invitation out for the tenth time. Leaving the house is difficult.

- Ask what you can do in general to help someone. For instance, I rarely forget to take medication. But many people find taking medication difficult to remember to do, and so a daily text to remind someone to take their pills can be a massive help. 

- Be kinder to one another. So much recent unnecessary cruelty directed my way has had a much huger impact on my mental health than those responsible would imagine it would have. Next time you go to write that passive aggressive tweet, or that insulting Facebook comment, ask yourself if it's really necessary. 

- People with severe mental illness do not expect you to be able to make it better. Nor are you expected to understand. Personally, what I would like, is when I tell someone I'm incredibly anxious, that they do not leave me to it because they are scared of getting it wrong. Tell the person that you are there if they need anything, ask what you can do to help. You'll build up trust, slowly. If you're scared of trying to cope, imagine what they feel like.