I had always been a bit wary about claiming disability living allowance (DLA). But aged 31, after being prompted by various people, I finally applied.  Perhaps there was a part of me that didn’t want to be disabled enough to get a benefit, despite the fact I have a life-long neurological condition. I wasn’t sure I would qualify and knew from my days of unemployment that claiming benefits is a hassle; and I was working and managing OK financially, so didn’t feel I needed it.

When I got the letter confirming I qualified not only for help with getting around, but also with my care needs, I was surprised – I didn’t think I would get that much support. Best of all, it was a “lifetime” award. The money would come until I shuffled off my mortal coil.

It took me a while to realise what a difference it made to my quality of life. Having money to employ someone to clean the flat, which I found difficult, improved my mental health no end. Getting to the end of an exhausting day and not worrying about paying for a takeaway or ready meals, or turning the heating on, or having a bath, was great. And I could stop worrying about using public transport; getting to the train station, needing a seat, wrestling with the rush hour and doing it all again at the end of day was too much. Instead, I was finally able to afford a fairly comfortable and reliable car.

All these things made life easier, decreased pain levels and, crucially, enabled me to focus my energy on working.

Over the 15 years I have received DLA, my ability to get around, and look after myself, has inevitably decreased. DLA has been a backstop to helping me manage those changing circumstances. I now lease a car from the Motability scheme, which allows for almost worry-free motoring, and I can easily fit my £1,000 mobility scooter (also part funded by DLA) in the back. I had to move house to somewhere with no stairs; DLA helped subsidise the packing and moving costs. DIY is no longer an option, but DLA means I can “get a man in”. I can’t get chiropody on the NHS any more, so DLA helps.

I became self-employed because I needed to stop commuting, and flexible working hours. Pain is a constant companion, colouring and influencing every decision, from making a cup of tea to deciding what work projects to take on. Running your own business brings its own challenges; I get some help from the Access to Work scheme, which supports disabled people in employment, but it doesn’t cover all my disability-related work costs.

On a day-to-day basis, I’m not poor. Not today. But the combination of a deteriorating condition making it harder for me to work, and a clear intent of the government that those who can’t look after themselves will fall by the wayside, leaves me fearful for the future.

My “indefinite” award (it semantically changed from “lifetime” a few years ago) of DLA is to be taken away and replaced by an assessment for the new personal independence payment. The government’s own figures show that by 2018, more than 400,000 people who would get DLA won’t get PIP. What on earth are all those people going to do?

And will I get the same level support I get now? Looking at the new criteria, I may not, because the qualifying distance for how much someone can walk has been more than halved. If so, that’s the car gone, and my ability to work shrunk even further – I can’t see a way of continuing to work in my industry if I can’t leave the house. For a government so obsessed with employment as the cure for all ills, the irony is almost unbearable.

Last month I got my annual letter from the Department for Work and Pensions confirming my benefit uprating. It says I have an “indefinite” award for DLA. They should have saved themselves the postage. With the scrapping today of DLA and the introduction of personal independence payment (PIP), it’s not worth the paper it’s written on.

The Guardian