Month: January 2011

In 2008 I moved in with my close friend Danni Brennand. Between us we had diagnoses of myalgic encephalomyelitis (Danni), Asperger’s Syndrome (the pair of us), severe dyspraxia (me), and acute mental illness (Danni). I was fresh out of university and she had just escaped from a supported living unit for people with severe mental health problems, where she had lived for a year. Before that she had been stuck in a psychiatric hospital, as she had nowhere else to go. Together we decided that we would have our own flat, supporting each other with the things we found difficult.

At night before Danni went to bed I would sit with her to try and calm her anxiety. At that time she was feeling actively suicidal and struggling to cope with a combination of insomnia, exhaustion, and the inevitable nightmares that descended on her when sleep did come. She needed someone there with her. When she enrolled in a full-time life skills programme at a specialist unit, I travelled with her to be sure that she got there safely, as she found my presence reassuring and I was able to keep her safe when she had panic attacks.

I was in charge of the household shopping, as Danni’s mobility problems meant that she couldn’t get out of the flat much. She was in charge of organising me. (“Vicky! Remember to…”) She would write out a daily timetable for me on the living room whiteboard. I dealt with any phone calls that were necessary, as Danni can’t use the phone. Danni organised all the bills and calculated the household budget, as my short-term memory problems make it impossible for me to manage my own money.

I cooked for us two or three times a week. Danni was too ill to stand at the stove, but she has better than safety awareness than I have. “Vicky?” she called in cautiously one day. “Is the flat meant to be full of smoke?” With her to open jars and tins for me, to make sure I switched the oven off, to stop me if I did anything too hazardous, and to check the expiry dates on food (once I made a stir-fry with rotten vegetables, dreamily handing a plate of stinking green-yellowish gunge to Danni without registering anything unusual) we remained reasonably well fed. We did rely heavily on ready-prepared foods, as my co-ordination and memory skills mean that daily cooking is not practical – it’s much more time-consuming than it would be for someone without my conditions, and I have a very limited repertoire of meals that I can make. I have specialist kitchen equipment that makes things a bit easier, and with Danni’s support my skills began to improve.

Sometimes our problems areas clashed. In March 2009 Danni had to go into hospital in a hurry. I visited her every day, and every day she asked me to bring in some clean knickers. That request was repeated with increasing desperation as the week went on, but the knickers themselves never materialised.

“Danni, I’ve been organising some support for when you come out. I’ve contacted social services about our – “

“Have you brought me my knickers?!”

“N – no, but I have brought you this statue of Our Lady of Mount Carmel to keep by your bedside, look.”

Despite these minor hiccups, we worked well together as a team. Two disabled women enabling one another to live independently. My old neurologist told my parents that independent living was something I could never manage. She was wrong.

Disability Living Allowance (both Danni and I receive it) helped us more than I can ever say. It’s not a fantastic amount of money: contrary to the myths that abound in the Daily Mail comments section, you can’t use it to go cruising in the Bahamas. But you can use it to buy the squeezy Branston pickle bottles that you can actually open, as opposed to the cheaper jars that you can’t. If your disability means that you can’t drive, you can use DLA to pay for taxis home from work when you finish at 10:30pm and the buses have stopped running. (Yes, I had a job – we disabled types quite often have jobs, you know.) You can use it to pay for all the things you lose as a result of your memory impairments and all the things you break as a result of your physical co-ordination problems. DLA is too small a sum to cover all of this, of course, but it does help a lot. And if you ever have to take a week’s unpaid leave from work because one of your closest friends has had an emergency admission to hospital and you need to be there for her, you can rest assured that you’ve got enough to pay the bills.

And the government ought to be resting assured that it won’t have to foot a care home bill or even fund a support worker, as the two of you are doing such a good job of looking after yourselves. But it isn’t. It’s trying to take away the small allowance that the pair of you use to live independently together. Meanwhile, the Prime Minister is outlining his vision for a ‘Big Society’ where everybody steps in generously to help one another, as though this is some radical new concept that is at odds with the benefit system.

It’s hardly radical. As a member of the disabled community, I have been privileged to meet many generous-hearted people who are going out of their way to assist one another. Some live in mutually supportive arrangements such as the one I had with Danni. Others spend a lot of their time raising money for disability charities or advocating on behalf of disabled friends who struggle to get their needs met. Now that DLA and other benefits are under threat, I have been moved to tears (literally) by the number of disabled people who have stepped forward to offer money and other forms of practical support to those in the community who lose benefits that they will struggle to cope without. And the funny thing is that none of these people are fabulously rich. If anything, they’re quite hard up. But that doesn’t stop them caring. Go here and see for yourself: http://philgroom.wordpress.com/2011/01/16/5-quid-for-life-in-search-of-a-campaign-name/

Meanwhile, the politicians who support the benefit reforms seem intent on portraying them as workshy cheats. They may deny it, but when they devote such relentless energy to ‘reforming’ a benefit that is already notoriously difficult to claim and has only a 0.5% fraud rate, you have to wonder what their motivation is. In declaring that they plan to cut down DLA claims by 25%, they aren’t thinking about the people who make up that figure at all. If they do think of us at all, perhaps they just see easy targets. Clearly they haven’t met Danni when she is in a bad mood.

The purpose of One Month Before Heartbreak is to illustrate that the figures have faces. If you are affected by DLA reform, or benefit changes more generally, please write about it. Submit it to the government’s consultation. Make it public. Share your strength.

I think that is what the focus should be here – strength. I could have written about so many other things, including the huge difficulty I had in claiming DLA in the first place; how awkward the system is for people with my problems to understand, let alone navigate successfully; the lies and bad treatment I got from the DWP; the intimidating nature of the medical assessment process; and the effect this had on my health. I didn’t. I wrote about me and my good friend, because ultimately this is what matters the most – the people involved.