I want to tell you a little about what it was like for me to apply for a disability benefit in the United Kingdom. Many horror stories can be told about this benefit and how unfair the rulings are. I have friends who have turned up for assessments in their wheelchairs and been sent away having been awarded zero points for mobility issues. Far worse stories can be found online.
As for me, I was awarded six points in total. That meant I was deemed outside the criteria for being awarded the benefit because of problems in my daily living skills. You need eight points to receive the benefit. Everyone around me was pretty pissed about it. They were shocked that I hadn’t been awarded the benefit, shocked at how unfairly I’d been treated.
Six out of eight. How frustrating is that? At the face to face assessment I hadn’t coped at all well. I wasn’t able to answer questions clearly or with adequate information because my head wasn’t working well enough. But that didn’t matter to the assessor. I know I was asked whether I can cook a meal. And I know I answered “Yes” and could say no more. So “Yes” went into the ticky box. Except mostly, I can’t cook a meal. I know how. I’ve enjoyed times I’ve been able to do it. But mostly not. It’s not because I lack the skills in theory. I just lack them in practice. It’s a mix of anxiety, executive function problems, and the way I can get distracted and forget about what I was doing – which isn’t great when you’re making something on a hob. I moved to my new home four and a half months ago. I have not used the hob yet, not even to heat a tin of soup – and I have a cupboard full of tins. I’ve used the oven for ready meals or oven chips, but that comes with a reminder for me. Set the alarm and it doesn’t shut up. I’m not sure it shuts up ever. And it automatically turns the oven off. So that’s at least safe. I’m not up to preparing food though and certainly not up to putting the steps in the right order to buy decent ingredients and cook them before they’ve gone mouldy. Sometimes I don’t eat at all. And I’m eating a lot of junk food and snack food to get by. I’m also getting fatter since I moved here not because my diet is good but because my diet is pretty damn bad. Perhaps one day I’ll get better at that.
At the assessment I couldn’t express any of my problems. I’d written them all on the application form but everything I’d written there in some detail – knowing I wouldn’t do well at a face to face assessment – was totally ignored. So I was given zero points for that area of my life. The assessor noted that I must be eating properly and able to cook wonderful meals because it didn’t appear as if I was starving to death. Yeah. Junk food. It’s high calorie. And she told me that I didn’t have a food problem at all because, and I quote, “You can live on two biscuits a day.”
I could write about other aspects of the assessment too. I could mention how the assessor said she understood the experience of autistic meltdowns and shut downs because she’d had a panic attack once. So she didn’t see that I could have a problem at all in that area, at least not one worth mentioning. I could mention how her report noted that I am a very tall woman – six foot four. That’s not only completely irrelevant to the benefit criteria it’s also five inches out. I am five foot eleven and that’s only when I manage good posture. Otherwise I’m more like five foot nine. Her first words to me were “Gosh, you’re tall. How tall are you?” My answer was to hold my hand up to my head and say in my baby voice, “This tall!” I could do no more.
Then there was the dangerous question about the application form. “Did you write it yourself?” Now my almost non-functional brain at the assessment interpreted that question as “Are these words written in your own hand using a pen?” So I answered “Yes.” And that was that. The correct answer was that I’d received lots of help writing the form from separate people in charge of three autism charities and that the person accompanying me to the appointment ran a fourth autism charity and that I wouldn’t have got through the door had she not been there with me. But I answered “Yes.” I could do no more. It was ticky box time.
I could carry on talking about the assessor’s report and her attitude and how wrong it all was. But you get the general idea that my assessment wouldn’t have been out of place in a Kafka novel or perhaps in some ministry office in 1984.
It took me at least a month and a half to properly recover from the stress of that assessment. I’d spent much of it talking in the voice of a six-year-old because it was the only way I could talk. I’d spent much of it talking about my soft toys. To be honest I’m surprised I could talk at all. I got cross at one point and nearly had a full-scale meltdown. I only wish I had crossed that line!
I recovered. Just in time to receive the letter telling me I was only three-quarters disabled enough to get any help. Then I needed to recover again. I got help to appeal and went to the tribunal. Eventually. In the middle of that the Department of Work and Pensions managed to lose my entire case records and claimed I’d never sent them anything, even though I had a letter acknowledging receipt of it all. I think that problem was made a lot more difficult because I’m transgender and when you begin gender transition and change your name with departments like the DWP you are automatically placed into a “sensitive” category. That means if someone contacts them to help with your case whoever they talk to can’t access any of your records. It’s incredibly annoying. One day I’ll manage to get my act together to get myself out of that sensitive category with the VIPs and the sex offenders.
The tribunal was very difficult for me too. Both times. Even with a lot of support from yet another charity. They cancelled it the first time because I was needing to use text to speech because I wasn’t able to talk. You might think that might work in my favour in getting some points for communication difficulties. You might think erroneously.
After the second tribunal and another set of ticky box questions I couldn’t answer properly, which followed a whole lot of talk I didn’t take in at all, I didn’t hold out a lot of hope. Eventually the judgement arrived.
The initial assessor had awarded six points.
So did the tribunal.
But get this: They were a very different six points. Yeah, now I was seen as being just as disabled but in a new set of ways. Disabilities had magically vanished. Others had appeared in their place. Doesn’t that in itself reveal a broken system? Again, I was deemed just about not entitled to help. Given the system it wasn’t a surprise.
With even more help I could have taken the process further, gone to higher courts, risked lots of my own money that I didn’t have. But I didn’t have the mental strength. By the time the tribunal ruling was received it had been eighteen months since I’d applied for the benefit. So I gave up at that point. Beaten.
After the ruling was received I fell into the pretty major mental health issues I experienced in the second half of last year. There were other factors but I know that this whole horrible process harmed my mental health quite a bit. During that period I wrote something I’ll share with you tomorrow, just words thrown out onto a piece of paper from a place of despair and a place of anger that I was seen as both disabled and not disabled, perfectly capable and yet incapable.
Six months later, and two years after the initial application I was able to reapply for the benefit. This time I wrote even more information on the form. About every mental health issue I’ve had through this life. I got the help of a mental health professional in making the form as full and as honest as possible. They say to fill in the form as if it’s your worst day. Well I had some pretty bad days and symptoms to tell them about. I may not always be stuck in one part of the house afraid to move because of the scary hallucinations blocking my way. But it has been known – and I received a schizophrenia diagnosis when I was thirteen too. Erroneously I think, but I did receive it – and then received no treatment whatsoever. My mum always said I’d imagined the psychologist, whoever he was, who visited me in my bedroom to assess me. Perhaps he was a symptom too! That was the first of many different diagnoses. Some I accept and some I don’t. This time I included more diagnoses on the form and detailed how they affect me. I didn’t include schizophrenia but the GP did include schizotypal disorder and borderline personality disorder alongside a description of my hallucinations, anxiety disorder, and depression and how I’d had them all since childhood – and of course had been autistic since birth. Side note: I just recalled the time I talked about autism with a medical professional and was asked how long it would take me to recover!
My application form contained four thousand words of incredibly depressing and distressing extra information. I wouldn’t have been able to get it into order and to be relevant to the possible points awards without a lot of help or without the stunningly useful guide produced by the Benefits And Work website. Four thousand words. As I say, I have some pretty appalling worst days! Thankfully I have best days too and right now I’m going through a very good patch in my life. A very good patch that still included five days at the start of the month where all I tried to do was stay alive and stay in one piece.
I am quite shocked at how good things currently are and I’ve done some exciting and scary things for the first time. I’m also totally proud of myself for the way I’ve fought for this life in the last few months. And for the way I’ve carried myself. When I performed my writing on a stage last week nobody there would have guessed I had problems at all. It was one of my best days. This is a month in which I’ve managed the social of a choir retreat and will have sung publicly with that choir and three more too. This is the month in which I’ve had a script performed at a theatre for the first time. I’ll have helped at a showcase for International Women’s Day, joined a theatre and acting group, and been to what is possibly the poshest event of my life.
Nobody when I was out this weekend – singing again – would have guessed how furiously I was working to mask the problems underneath or that I was only getting through what I was doing by complete strength of will. If I’d had to stay out longer they would have found out. Most definitely because I was quickly falling apart. I can only be strong for so long. And this is the month when I became overwhelmed in the centre of Newcastle and collapsed down onto the floor in a quietish corridor and had to be helped out eventually by five security staff. The fabulously good patch still has its low points.
If it wasn’t for these good patches, long and short, I would have died many years ago. Suicide. As it is, getting through last autumn alive took every last bit of my strength and every bit of support I could find.
This time round I got my GP to help with my benefit application too. She provided a very well written letter to attach with my case. Crucially she gave reasons why I shouldn’t have a face to face assessment this time round because it would be so damaging to my mental health. Victory of victories! An assessor from the DWP phoned the mental health crisis worker who was supporting me and phoned the GP surgery to check on details in the form. And I didn’t have to suffer another face to face assessment.
So there’s this:
I was awarded more than six points. After a two-year fight. Yes. I am in receipt of a benefit. For the first time in my life I am receiving financial assistance in my problems. I didn’t even get help when I was spending my days in a psychiatric hospital.
Now help is here. To me it feels like a miracle. To the people around me, those who have helped, me to charity workers and support workers and everyone else it’s just what I deserved in the first place.
I like to leave you with some good news.
Tomorrow I’ll depress you all again with my stream of consciousness complaint about the situation in which I found myself. Enjoy!