Today it’s Blogging Against Disablism Day, an annual blog carnival in which we take stock of our crip status and our lives. To my shame it’s been three years since I last participated in BADD, and almost two years since I last blogged about how living with epilepsy affects me.
Not much has changed, politically, since I last wrote about my fear of losing my Disability Living Allowance. Back then, Cameron’s government was barely three months in power but his government had already struck fear into the heart of the disabled community by announcing a wholesale overhaul of disability benefits.
We were right to be afraid. Terrible changes have been wreaked on Employment Support Allowance, with thousands too ill to work having their benefit withdrawn. Horrific evidence has emerged of how the tick-box assessments have been carried out (not by qualified doctors), failing to take into account of people’s fluctuating conditions and frequently held in buildings with no disabled access.
I work, so I don’t claim ESA. Nevertheless, there’s no grounds for complacency. DLA is on the threshold of being transformed into something called Personal Independent Payment and it too will be based on a tick-box questionnaire that tots up the points – reach the threshold of 15 and you’ll get some money. If not, tough.
Having ticked the boxes on the draft PIP assessment form, I will not now or ever reach 15 points. At best, I might rack up 9 points and still qualify for the mobility component but I daren’t hope that far ahead. I’m not able to drive so, despite having a concessionary bus pass for local travel, I spend a lot of money on taxis and trains. My DLA goes a small way to offsetting those costs. I am certain to lose my care allowance, the bit that covers the extra costs I incur after a seizure and need to pay for assistance or delivered meals because I’m too poorly to cook. Technically, I shouldn’t ever be cooking by myself despite living alone because I could have a seizure without warning at any moment. However, my DLA is too meagre at £67 a week to pay for a carer to oversee me every day.
What has changed for me since I last blogged? A lot on the personal front. Even before that blog post, the medication I was taking to control my seizures was failing me, and increasingly so. Over a period of around 18 months, my condition deteriorated badly. I developed new seizure types, I had seizures more frequently and, worst of all, my medication had a terrible effect on my mental health, a known side effect of it, culminating in me almost having a total breakdown a year ago.
Last August, with the support of my consultant, I changed medication. It took three months to make the switch, gradually increasing the new drug while slowly coming off the old one. This process is not without risk – changing drugs in itself can trigger seizures and there’s no guarantee on completion that things will be any better on the new medication. It’s a chance you have to take.
Fortunately for me, I have seen some improvement. My mental state improved almost immediately, the black fog of depression lifting overnight. I’m still having seizures, but fewer of them. None of them has gone away completely and I’ve developed yet another new seizure type but it’s one I can live with, for now at least. In context, while things have improved over the last 9 months, overall I am still in a worse position medically than I was 7 years ago when I first claimed DLA.
Yet I will no longer be considered disabled enough under the new PIP assessments to qualify for assistance. I, along with 500,000 other disabled people will have my DLA arbitrarily stripped away. I’ll have to go to be tested for my epilepsy, which is ridiculous given I was diagnosed in 1996 after a number of neurological tests in a hospital. If I do qualify for the mobility component of PIP I’ll still have to be reassessed regularly even though epilepsy is incurable.
Since I last blogged, I’ve been involved in the Spartacus campaign which has seen thousands of disabled people all over the UK fight from their beds against this government’s cruel maligning of us. We haven’t achieved all that we wanted to, but we also achieved far more than we ever believed possible. The Spartacus Report, published in February, was our clinical dismantling of the lies the government was telling about the changes to welfare.
Please read it. And join Spartacus. For at the end of the day, we are all Spartacus. If you’re reading this and you are fortunate enough not to be chronically sick or disabled, please remember that you are only an accident or an illness away from being one of “us”.
We are all Spartacus.