Here is a story from the UK but can relate to anywhere in the world today. Maybe even happening to you and your world. Read on….
I cannot remember becoming disabled. A seizure meant I lost consciousness, hit the concrete with my face, and then spent a few weeks healing and waiting to see a neurologist.
He then announced that, because this was my second seizure, I was officially epileptic, with the sort of internal short circuit that could either knock me out, kill me, or merely deliver a lifetime of worry.
The really memorable bit was when the neurologist asked me what I needed to do to fix it. “You’re the brain doctor!” I exploded. “You tell me!”
It was a bit rude, but then I was a bit unhappy. It’s not nice to hear you were born with a flaw that a brain surgeon can’t fix. And even harder to accept that dealing with it will be your problem, and not his.
Susie Boniface says disabled people are capable of amazing things, contrary to what you may be told!
In part, that’s the nature of epilepsy. But it’s also down to the fact that in this country, disability is treated as a distant, moral issue, a problem we all expect someone else to fix.
Which is why people who want you to vote for them tell you they have the cure. It’s usually economic, and comes in the form of a crackdown on scroungers, work programmes for those in genuine need, and an overall budget cut because the real problem with disability, we’re all told from the cradle, is how much it costs everyone else.
Except what disabled people are, and do, and are capable of, is far more than economic. And what they need is a government that will not crack down, but instead lend a hand.
There are 14million Brits with a disability. Some are age-related, like pensioners with deafness or mobility problems. Some are children, like those born with parts that aren’t working right. And 8.4m of them are of working age – with a childhood problem that wasn’t fixed, or a problem like mine which arrived in adulthood, and all trying to do the multitude of things other grown-ups do, like raise a family or keep a roof over their heads.
Just under 4.5m have a job. Either their disability, like mine, is mild, or it’s manageable. And for 14% of us, the best way of working is to be self-employed – to shoulder the financial risks and fend for ourselves, without the support of employers who are not all as understanding as they could be.
When I had my first seizure, I was a Mirror reporter, and the editor was very good about my inability to drive for year. When I had my second, I was freelance, and the fact I had to change how I travelled and lived, to turn down some work, was no-one’s concern but mine.
Last month, after 9 years of temporary driving licences and Driver and Vehicle Licensing Agency wrangles, I’ve finally had my full licence returned. But I could never be a full-time reporter again. The late nights, the airport dashes, time-zone changes, stress, and poor diet, would be as likely to invite a seizure as a crack pipe and bottle of absinthe.
But my health can always get worse. And so could yours.
You could have a car accident, an infection, or a fall. You can be on the wrong end of a punch, a fungus, or fundamental design flaw. Most disabled people were dealt an imperfect hand, but nevertheless continue to play the game.
They go to work, fall in love, raise families, and care for others. Many are invisible, because they don’t have a wheelchair or crutches, but a stoma bag, an atrial fibrillation, or mental illness. Yet most people don’t realise the disabled are also productive.
Perhaps that’s why 9 in 10 of all reports about disability benefit fraud to the Department for Work and Pensions (DWP) hotline turn out to be false. Maybe it’s linked to the fact that those with psychological disabilities seem to suffer disproportionately from the government’s ‘fitness to work’ assessments. It may even have something to do with a study which found that since austerity measures began in 2010, hundreds of disabled people have died, either abandoned or at their own hand, due to the “slow bureaucratic violence” of a state which has falsely claimed, for centuries, that the disabled are too much of a burden.
Yet the government’s own figures show 1 in 5 of working age Brits are disabled, an increase since 2014. They are more likely to be part-time, and to do low-skilled jobs. Disabilities can be permanent, or they can come and go. Every year, 340,000 disabled people leave work, but 380,000 more find a job. That’s not a burden, so much as a flexible workforce that deserves some damned respect for managing all that while living with things like chronic pain, endometriosis, schizophrenia or learning difficulties.
Some employers are considerate – one friend in a wheelchair takes his carer to work. Others, as countless employment tribunals show, find any reason to sack an employee who they don’t realise is working harder, and showing more dedication and commitment to their tasks, than someone who doesn’t require use of a disabled loo.
And it is no gravy train. I have a friend crippled by Long Covid fighting his local planning department to get a dropped kerb outside his house, because he cannot walk to the end of the road where he used to park, pre-pandemic. Another chap with arthritis in his ankles wanted to get a blue badge to park near the supermarket – but no, that’s possible only with benefits he doesn’t qualify for.
A disability doesn’t mean you get stuff for free. It usually means you have to fight, harder and longer and more expensively than anyone able-bodied has to, for the things you ought to have anyway. The fact the DWP hotline is about fraud that barely exists, and not offering help, says it all.
Compared to how it felt 9 years ago to be told I was disabled, I am glad that managing it is up to me, and no-one else. I am lucky to be able to change my work to suit my needs. With enough sleep, and not too much stress which is a major factor in causing seizures, my epilepsy has so far been kept at bay.
Colin Traynor was more epileptic than I, but in 2012 as the Tories began their austerity overhaul of welfare he was ruled fit to work. He was put through the financial stress of having his benefits stopped, then the added pressure of appealing the decision. He died following a seizure, before his family learned his appeal had been successful.
Grandad Errol Graham was allowed to starve to death because he was too mentally-ill to argue for the help he needed. Michael O’Sullivan and Jodey Whiting both took their own lives, having been told they were fit to work when they weren’t even fit to survive such a setback.
How many more people would still be with us, playing with grandchildren, maybe even recovering, if they’d been helped instead of hindered? Probably thousands, and if you include the fact 60% of Covid deaths were disabled people, it’s hundreds of thousands.
We have our vulnerabilities, but we are not weaker. We have our needs, but we are not a burden. We are, quite simply, you.
We vote, we work, we love, we hurt, we exist in bigger numbers than ever before. And with poverty, food deserts, fuel crisis, the cost of living, a damaged National Health Service, and next to non-existent mental health care, our numbers are growing. You may feel fine now, but trust me, that’s not necessarily a permanent state of affairs.
Older, younger, rich, poor, sick or getting better, disabled people have done and are doing amazing things. They are a productive and driven workforce, informed and passionate activists, and an increasingly-important voter demographic. So it is a great pity that Work and Pensions Secretary Therese Coffey spends so much of her time defending the Prime Minister’s handling of sex scandals, and so little defending the disabled, who would welcome the help.
But no government will stop cracking down on the people who are a little bit cracked until all voters tell them to stop it. Perhaps that starts now, with the Mirror’s week-long series on Disability Britain, by and about people who are not all in wheelchairs, and are not prepared to hide.
There have been moments when my diagnosis was devastating, but far more where it stirred me to do better. Nowadays I prefer to think of myself as more-abled – more able to understand, and more able to fix what’s gone wrong.
It would be lovely if all those disabled by an unhealthy belief in their own perfection could do the same.
Source: mirror.co.uk, Fleet Street Fox