Non-partisan UK-based Disability campaign. Advocacy for people with invisible illness and/or physical & mental health conditions. Also Carers, their Families and Friends.
Our individual voices are too quiet to be heard, but collectively we can shout loud enough to drown out this tide of abuse against us. Disability Hate Crime, lack of full legal protection, people in care homes costing too much to be let out and not one political party willing to fight for us.
Six years ago I suffered a breakdown and was diagnosed with depression and social phobia (also known as social anxiety disorder). I was 17. The most work I'd ever done was in the village corner shop - a few hours every week for a whopping £3 an hour, and of course I never had to pay tax or NI contributions because I was so young.
When I turned 18 I went quickly and rather trivally onto Incapacity Benefit. I remember going to have a quite hideous interview in a really unwelcoming building - at the time I was pretty much housebound and only because I was driven there by my mum was I actually able to go. Still, I got the benefits and received them until I went to university a year later. Because of the benefits I was able to get some private CBT (Cognitive Behavioural Therapy) which helped me to overcome my daily panic attacks: but I was far from better; the treatment I'd had was a temporary solution to a problem that ran much deeper than just my panic.
University went by, and I racked up around £25,000 of debt along with most other students. I ended up oweing my parents a good few thousand pounds that they refuse to allow me to even try and pay back. Because I was a student, I couldn't receive benefits, even though my health deteriorated to the point of being placed on suicide watch and under the care of a psychiatrist. It's possible that I could have been able to get some disability allowance from my university, but I was never offered it and wasn't in a state to be thinking about going through what would have undoubtedly been a long investigation into some help that wouldn't come to much.
When I left university, and finally started to get some proper treatment from the NHS, I applied for the new form of incapacity benefit - ESA. Because it was three years since I'd been on Incapacity Benefit, I wasn't eligible to go straight back on that and had to go through the rigmarole of applying again. So I did the form over the phone with a very helpful woman who was patient with me when I got upset telling her why I couldn't work. I started receiving benefits and a couple of months later I was summoned to Croydon for a work capability assessment. My therapist told me that it would be fine; there's so much evidence of my ill health (from both the hospital and my GP) that it would be nigh on impossible for ATOS to turn me down.
Oh, how wrong she was.
For those of you that don't know about the assessment, here's how it works: you have an interview with a health professional. It doesn't, actually, have to be a qualified GP: or even someone who is actually qualified to identify your illness. It's just someone employed by the private healthcare corporation to tick boxes. To "pass" the test, i.e. be judged unfit to work, you have to score 15 points. I scored 0. On the day, I had three panic attacks; one of them right before entering for the interview. I was in floods of tears during the interview, couldn't lift my head up, and was shaking. The woman who interviewed me was rude, impatient and harsh in her questioning.
Thanks to the help of my local branch of Mind, I now have a benefits advisor who is helping me with my appeal and tribunal process. Amongs the help he has given, he gave me a copy of the work capability assessment for mental, cognitive and intellectual functions. He and I went through this and discovered that I should in fact have scored well over the 15 points required. These questions include such statements as:
"Normal activities, for example, visiting new places or engaging in social contact, are precluded for the majority of the time due to overwhelming fear or anxiety" - that scores you 9 points.
"Is frequently unable to get to a specified place with which the claimant is familiar without being accompanied by another person" - that scores you 6 points.
"The claimant misinterprets verbal or non-verbal communication to the extent of causing herself or himself significant distress on a frequent basis" - this scores you 6 points...and by now, you get the picture.
I appealed twice and eventually went up for a tribunal in March. They have a target of seeing you for tribunal within 16-18 weeks: clearly, it is far beyond that now. Not only have I continued to receive only £50 a week, on multiple occasions - despite me managing to put in regular sick notes - they have refused to pay me either on a seemingly trivial basis or one that they did not make me aware of. For example, I changed address; they refused to pay me for 6 weeks until I had proof of address and a new sick note bearing my new address. In this time I had to borrow money from my parents to avoid being thrown out of my newly-awarded temporary housing from the council, because it had meant that my housing benefit application was declined.
I now receive full housing and council tax benefit (which will of course change under the Condems' new plans, as I am only 23). However my application for DLA was turned down on the basis that I failed my ESA work capability assessment. For something that is meant to be separate to ESA, this is pretty disgusting. With that money I could offset the £10-£15 I have to spend on travel every week.
I have had to subsist on £50 a week - including whilst homeless - for over a year now. That barely leaves me anything to eat, once I have paid my utility bills, my phone and internet bills that allow me contact with the outside world and my support network on those days that I can't leave the flat, my transport bills which are high because I have to go to hospital twice a week and cannot drive.
This, of course, is just the numbers. This is before we even get to the stress and anxiety that my struggle with the DWP, with the tribunals service, with the council has caused me. Not only do I constantly worry about money, but I am dogged by one single repeating thought: "Maybe I'm not ill after all. Maybe I am just lazy, benefit scrounging scum. I've never made a NI contribution in my life. I don't deserve this. I'm leeching off people who are better than me because they get off their arses."
I shouldn't have to feel these things about myself. I shouldn't have to struggle on and try desperately to scrabble together food. It shouldn't make me burst into tears when, like this week, my boyfriend doesn't just bring over dinner for the two of us, but enough food for me for a week. I shouldn't be sacrificing my health, and more importantly my chances at getting better, because I can't afford to reach out to the support networks that I so badly need.
Yet, I do. And the reason that I've written all of this up is that I know for certain that I am not the only one, and I want other people to know that too; because if you're not the only one then chances are you're not making it all up, you're not lying to yourself, and just because your disability isn't immediately visible doesn't mean that it isn't there every moment of every day.