Category: Disability benefits

When truth is denied

Jane spoke without looking at me, without mentioning my name. ‘I think there is a personality disorder,’ she said. The meeting had been called to discuss the problems with the project I worked on, the clashing ideologies of the the national charity that employed me and the social services department where I was based. But mainly to address the concerns I had about how my volunteers were being treated, concerns that the volunteers had raised with me, which I had passed on to Jane, the social worker, her assistant Pat, and my manager at the national charity. Instead of discussing how these concerns might be addressed, I was being accused of causing trouble due to having ‘a personality disorder’.

My role was recruiting, placing and supporting young, full-time volunteers, in partnership with a scheme run by the social services department of a London borough. The scheme was based in a former children’s home. A couple of the rooms had been retained as bedrooms, as off-duty accommodation for the volunteers. While ‘on duty’, the volunteers lived in with a severely learning disabled person. There was supposed to be a paid carer at each project as well as a volunteer. The scheme was supposed to provide a positive experience for the volunteers as well as enable people with disabilities to live in their own homes, many having come from long stay residential care, at a time when Care in the Community was a new thing.

It soon became apparent to me that the volunteers were being exploited. Where there were insufficient paid carers and volunteers, sole volunteers were left at on duty for several days without relief. Also, the off-duty bedrooms were not exclusive to one person. Whichever bed was available was used, with no change of sheets, and there was nowhere for the volunteers to permanently keep their possessions. They were effectively living out of a suitcase. There was a volunteers’ house, too, given to the scheme by the council. It was ramshackle and tatty, and was infested with rats.

I thought that if I spoke the truth, if I tackled these problems directly with Jane and Pat, then they would be addressed. Instead, there was a kind of war against me, waged by Pat. Some of these skirmishes were direct – angry phone calls to my home on the days I wasn’t working. Others were sly, and difficult to deal with. Piles of jumble were left on my desk, paint pots and brushes piled behind my chair when the office I shared with Pat was being painted (she moved them there; they had been against a wall away from any desks). Pat complained that the name plates on our office door should be reversed in order: mine was above hers, purely because my surname came before hers in the alphabet. Instead of taking any responsibility for the volunteers’ poor living conditions, both Jane and Pat blamed these young people for being lazy and dirty. And I was blamed for not supplying the scheme with enough volunteers.

Whilst I was believed by my manager, who stated that she was very concerned about me working in those circumstances, and about the volunteers, nothing changed in that scheme. The charity did not withdraw from supplying volunteers (which I suspect was due to them not wanting to lose the funding), Jane and Pat did not make any improvements to the volunteers’ living conditions, and I continued to be targeted by Pat in her petty war. The only thing I could do, for my own wellbeing, was leave the job.

The reason for recounting this story is to show that telling the truth, speaking out, is not always received gratefully, or dealt with as it should be. It’s something I have been thinking of recently, of times where I have spoken out and told to keep quiet, incurred the wrath of others, or had my truth denied.

In the early days of my illness I was disbelieved by my GP. He put all my symptoms down to depression. This went on for two years, his blinkered view not open to the fact that the various symptoms I had might add up to other diagnoses. I was telling my truth and my truth was ignored, discounted. I felt I was going mad; not being believed makes you feel like that. Sure enough, when I changed GP I received a proper and full diagnosis.

Over the years, I have had skirmishes with the DWP over my disability benefits, and each of these has been due to me not being believed. This year, I was assessed for Personal Independence Payments (PIP), which is replacing Disability Living Allowance, a benefit I received for 20 years as an indefinite award. My husband and I filled in the form together, gathered evidence from professionals involved in my care and a friend who could account for how my disabilities affect me. My account and all the evidence were disregarded by the assessor. She spent less than an hour with me, and decided that most of what I said, what was written on the form, was not true. Because she said so.

It was not just the loss of benefit that affected me, it was not being believed. I did not exaggerate my difficulties, in fact it was really hard for me to put across how badly I function on most days, to address the truth of how limited my life has become. I contested the decision, asked the DWP to look again via a Mandatory Reconsideration. The letter that came (12 weeks later) ignored all my points, again ignored the supporting the evidence, and upheld the original decision. So I appealed to the independent tribunal service, expecting to wait a year until my case was heard. Imagine my surprise, a month later, when the DWP (not the tribunal service) wrote to say that they had reconsidered the original decision and the Mandatory Reconsideration. They were awarding me PIP at the highest rate. Although this is wonderful news, I have had trouble accepting it. First I was disbelieved, then disbelieved again, then all of a sudden believed! I am half-expecting another letter to say they are taking it away.

Truth -telling and how it is received … it is too big a subject for a short blog. Especially at a time when liars and deniers hold power in the White House and in Downing Street. Globally, truth and evidence are ignored in favour of what people choose to believe. Personally, individuals will always be ignored or vilified for speaking their truth, will be made to feel like they are going mad. 

*Jane and Pat’s names have been changed.

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