Here’s an irony

All my life I wanted to work. I wanted to do something important.

I did everything society told me I should. I worked hard, I went to college despite being told I’d never pass due to sickness absence. I went to uni despite being told by well meaning doctors not to go. I worked. For years, despite well meaning loved ones telling me I should stop.

When I became unable to “work” (in the traditional sense) I tried everything from classsy-bar-singer to teacher to saleswoman to trader. I tried self employed, part time and late shifts.

I worked. I got sick, I had surgery, I went back to work. I nearly died. Repeat.

In the end, family and friends launched “Campaign Save Suey” and nagged me at every dinner or party or wedding to STOP WORKING.

In the end, I had to. It was without doubt, the very worst thing I ever had to come to terms with about being ill. “There’s no such word as can’t” was the mantra in my house as I was growing up and realising that in fact, there was was very nearly impossible.

I wrote a book (no-one would publish) about NHS reform. I fed the homeless and took in waifs. I bought and sold properties, keeping us afloat for around ten years longer than we would have managed by sitting around feeling sorry for ourselves.

Through that whole period, my country accepted that I was so unwell, that I needed support. I didn’t feel like a “Scrounger” – I felt very, very sad that my ambitions and dreams had been taken away. I marveled at just how I’d managed to stay alive and blessed with a loving family. I thanked the NHS every day for saving me and I thanked the welfare state for giving me a little dignity.

Sometimes I thought “Well, my husband works, why should I get this money?”

Then when I spent £60 on petrol to get to the specialist bowel disease centre 130 miles from my home, or bought food that meant I wouldn’t make myself more ill, I was grateful.

I claimed DLA, but in good periods, when my “fluctuating condition” allowed me a little respite, I would cancel it, secure in the knowledge that the next time I needed it, I would simply re-apply.

I didn’t look at he ground every time I parked my car using a disabled badge. The nice lady at county hall had explained to me that “mobility” meant different things to every disabled person. I’d felt reassured and privileged.

All of that is now under threat. I feel like a burden on society. I feel that my voluntary contributions to many people in society are worth nothing. I feel that my life has been useless. Not to me or the people I cared for, but to “society”.

I feel weak and pathetic, where I used to feel accepted and lucky. I cannot earn even a little money from the writing I do or my family will lose everything – much more than I could earn from the few articles I might be able to publish when I am (unreliably) able to write.

It really isn’t about what I’ll “lose” if welfare reform is steam-rollered through. It isn’t about how I will survive – I would rather work myself to death than see my family suffer.

It’s about how I feel now. Every day. It’s about the articles full of lies I read every week in the Daily Mail. It’s about the distortions and mis-truths I hear from politicians now. It’s a society that is so convinced that a “something for something” society is fair, they never ask what become of those who need your support for nothing. Just because you care.

This is what you’re doing. Not “taking away” or “sanctioning” or “getting tough”.

You are making me feel invisible, unworthy and frightened. It’s that that I despise you for.