I knew it would happen sooner or later. I’ve watched friends go through the same difficult and time-consuming process over the last few years, and I knew my turn would come.
Today’s post brought a brown envelope from the Department of Work and Pensions (DWP). It informed me that my Disability Living Allowance (DLA) was due to end and I if I wished to continue receiving the vital equalising support it provides I would have to apply for its notorious replacement, Personal Independence Payment (PIP).
The DLA was set up to support disabled people who have significant care or mobility requirements, meeting the extra costs of living that they incur because of their impairment. This included accessible travel, equipment, prescriptions, and support expenses etc. Living in a non-accessible world can get extremely expensive. Research by Scope showed that disabled people spend an average £550 extra a month on disability-related costs. Back in 2015 I worked out that I spend at least £700 extra per month.
When my tics and support requirements intensified it was the DLA that rescued me, kept me safe and kept me working. Its replacement, PIP, is superficially similar. It’s not means-tested, you can claim it if you’re in and out of work, and it’s still supposed to ensure that disabled people have the support they need to live. But that doesn’t mean all disabled people.
PIP was ushered in with a clear cost cutting agenda, and since its introduction more than 50,000 disabled people have lost vital support. With the move to PIP the Conservative government did something that’s become their trademark – leaving the superficial shell of a service while destroying how it works in practice. They do this by constricting the eligibility criteria so fewer and fewer people qualify for help. This means thousands of lives have become more difficult and less safe.
Accepting you need support and asking for it is a tough process.
Living in a world that often puts up barriers because of how your body or mind works can be soul-destroying.
Meanwhile spiking rates of disability hate crime, and divisive rhetoric around disability, eats away at the confidence of disabled people.
As I opened the envelope my heart sank as I realised it was my turn to make the choice between losing essential support and subjecting myself to intense, dehumanising scrutiny.
I called the PIP call centre straightaway and talked to a stranger who was reading from a screen, asking me about some of the most intimate and personal aspects of my life.
However hard and upsetting I find this process I still have many advantages – English is my first language, I don’t have a learning disability, I’m confident with filling in forms and I’ve got a strong network of support. But many disabled people will be facing this complex, daunting process without these advantages.
As I go through this process over the next few months I’ll share my experiences and, wherever possible, any resources or information that might be useful to others in a similar position.
There are some great guides to applying for PIP for adults here, and for DLA for children here. If you need support the Citizens Advice Bureau or Disability Rights UK maybe able to help. And if you’re feeling your self-esteem or disability pride waver, have a listen to these great activists: Stella Young, Liz Carr and Francesca Martinez.
Disabled people have the right to full and active lives, to the support they need, and to processes that promote respect, not pity. We’re not the problem, but the system and its shrinking safety net is.