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would be withdrawn.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…