Raise your voices, because it really 'shouldn't be like this'

By Jill Segger

December 14, 2013

Jenny (not her real name) describes herself as “a medicated production”. In preparation for our meeting, she had recourse to a morphine patch. She explained that she always tried to “dress nicely and take care with my hair and make up when I go out or meet people.”

She walks slowly and with evident difficulty and needs a stick when out of doors. Sitting is uncomfortable and painful for her and she did not move from the edge of her upright chair during our conversation.

I am not going to reveal details of Jenny's disability as I don't want to make public anything which could identify her. But what should be known is that this long standing condition is the result of an accident and that she has undergone several operations and spent months in hospital. Before all this happened to her, Jenny had a skilled and socially valuable job. She misses it and yearns to be able to do that for which she was trained.

Jenny has a teenage son with profound intellectual and physical disabilities resulting from a birth accident. She obviously loves him deeply and is fiercely protective of his well-being. “I've always had to struggle for him”, she tells me and her eyes fill with tears.

Both Jenny and her son receive Disability Living Allowance (DLA) to assist with the considerable extra expenses arising from their conditions. Recently, she received a requirement to complete forms for them both and attend another assessment. This arrived at a very low point for Jenny. Her husband (I'll call him Peter), a devoted step-father, had not long been in a new job after a extended period of unemployment. He is diabetic and his new, temporary job, entails 12-13 hour working days. Exhausted and suffering from tendonitis, he visited his GP who advised him to rest for several days. “He meant well”, said Jenny. “But he just doesn't understand – because Peter's job is a temporary, agency appointment, there isn't any sick pay. If he doesn't work, we can't pay the mortgage.”

In her distress, Jenny did something which she describes as “really stupid”. She tore up the re-assessment forms and threw them away. “I just couldn't cope with it”, she said. “Neither my son nor
I are ever going to 'improve' and though they call these 'forms', they're more like a book.” She holds her fingers a couple of centimetres apart to indicate the thickness of the mandatory paperwork.

Of course, Jenny missed the appointment for the assessments and was sanctioned by having her benefits stopped. She makes no excuse for her action and is at present engaged in filling in the forms for another assessment. “But it shouldn't be like this, should it?” she says.

Later that day, Mark Field, MP for the Cities of London and Westminster appeared on the news to defend a £7000 pay increase for MPs. Mr Field may be a personally kindly man. But he has no connection at all with the world of pain, struggle, severe anxiety and borderline despair which Jenny, her family and so many others inhabit – a world in which legislation on employment and social security seems designed to penalise and crush those who most need its protection.

Jenny is right. It really shouldn't be like this. If you think the same, tell your MP, write to your local paper, join a campaign group. Because as Martin Luther King said: "Our lives begin to end the day we become silent about things that matter."

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© Jill Segger is an Associate Director of Ekklesia with particular involvement in editorial issues. She is a freelance writer who contributes to the Church Times, Catholic Herald, Tribune, Reform and The Friend, among other publications. Jill is an active Quaker. See: http://www.journalistdirectory.com/journalist/TQig/Jill-Segger You can follow Jill on Twitter at: http://www.twitter.com/quakerpen