The Simon Heng Column

    Until now, I hadn’t thought it necessary to talk about my
    disability. But now it is.

    I became tetraplegic 10 years ago. I need round-the-clock care, as
    I cannot do anything physically for myself. My only source of
    income has been the benefit system; the pieces I have written for
    Community Care are the first paid employment I’ve had in
    that time.

    Like a good, law-abiding citizen, I declared my changing
    circumstances to the Benefits Agency. I have been told that if I
    continue to write these columns on a weekly basis I won’t be
    entitled to income support, which is a “gateway” benefit to other
    entitlements such as housing benefit and free prescriptions. As I
    understand it, I’ll still be entitled to incapacity benefit, as the
    pay falls within the permitted earnings limit, but only for 26
    weeks. After that, it is expected that I would move on to full
    employment. If I continued in the same way my incapacity benefit
    would be withdrawn.

    I am not able to work full-time: I get very tired easily, and
    sometimes my physical needs are unpredictable, so a “regular” job
    would not be feasible for me.

    I calculate that I would need to earn at least £140 per week
    to be in the same financial position as I am now. I would also be
    working to pay for my own care. I would like to think that I could
    earn this much through writing regularly, but I doubt it.

    Essentially, I feel trapped. I can’t work enough hours to afford to
    lose benefits. I don’t see the point of undervaluing what I do by
    asking for a pay cut. I thought the idea of direct payments and the
    Independent Living Fund was to provide a level playing field for
    disabled people, rather than expecting them to work to pay for
    their own care.

    Right now, I’m resigning myself to a lifetime on a low income.
    Unless you know of a job that involves 10 hours a week at
    £30,000 a year…

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