When the medical profession thinks an employee shouldn’t be working, yet most of the time the employee is able to work, it can cause headaches for employers. Those of us with chronic conditions that are debilitating yet inconsistent and with intermittent symptoms very often turn to self-employment as a solution. But instead of the employer having to put up with delays and additional admin, it is our customers who need to be flexible when we can’t manage a full week’s work at a regular pace.
For many years I have been self employed and in 2008 the DWP signed me off work completely due to my illnesses (later I instead chose to work whenever I could). To keep me going, the welfare system provided assistance with rent through Housing Benefit, Council Tax Benefit, the lower rate of Disability Living Allowance and other benefits.
But not only was that not enough to live on, it was a horribly isolating way to live. Not only that, it was making my conditions worse than ever. I suffer from a multitude of health conditions that combine to make me extremely tired when I work at a regular pace. Even when I am very careful and work slowly at about 50% of the pace I would be happy to work at, I still often can’t manage a full week and sometimes, in winter, it’s much worse.
I currently have a small classic car and older car restoration and repair workshop (for which I also receive a tax credit) that, for the past two years has not been financially successful in terms of a small business as if run by a healthy person. Partly my lack of success is down to my unreliability due to my health problems and partly because decades of poor health mean that my financial situation in my 60s is as bad as it was in my teens, worse in many ways, so I’m massively under capitalised. All work tends to be financed on credit cards at high APRs unless the customer supplies parts or pays for them in advance – as some of my customers are in the same boat as me, delays in the work abound. Also my workshop is not big enough to be able to progress two jobs at once.
Of course I make up for the inconvenience my customers experience with a very low charge rate. But the success of the business is that it turns over a few thousand every year, adding to the health of the economy through VAT and my supply chain, keeps me far fitter than I would otherwise be and provides a service to the community. My main project will hopefully drag me out of the mire eventually but, meanwhile, the business ticks over but doesn’t make enough for me to have a social life, go out, be adventurous, have holidays or even ensure my bills are paid every month. Yet it feels like a worthwhile enterprise; I fix cars, teach skills and hopefully empower my customers to take on tasks they would otherwise not want to tackle.
But lately the Tory government are doing their best to undermine micro-businesses run by people with disabilities. They have introduced the ‘Minimum Income Floor’ (MIF). That means that if you’re self-employed it is assumed your income is for a full working week at the the minimum wage. Well, last year my business lost money (as do many vast multinational companies, it’s not meant to be a death-knell ) so my income from work was zero. Yet the MIF requirement I was told over the phone, was not able to be appealed on the basis of disability and because of it I have lost my Council Tax Benefit and am about £1000 a year worse off – in fact more than £1400 worse off as I make up the shortfall on credit cards. Then there was the Bedroom Tax. Yes, I could have moved to a smaller place but my life is held together by the stability of my Housing association flat – I need a spare room for my daughter when she visits (it’s her room for goodness sake!) or for my very occasional guests. That has made me about £500 a year worse off. And those cuts are not including real-term cuts due to inflation in prices and stagnation in benefits. I’m also on an electricity key-meter, the poor are charged a higher rate for paying in advance while the rich get better deals and pay in arrears.
This piece is not about my complaints, though they are many, it is about letting my customers know I’m doing my best even when it seems I’m not pulling my weight. It’s about whether a community can make adjustments, as would an employer, for those who will never be able to compete with the young and fit in the market place. When you’re poor everything is expensive because many things are bought on credit at high interest rates. Special deals are often made available when one has no means of accepting them. Bulk purchases are out of the question. Taking advantage of one’s knowledge in buying and selling is not an option – all life’s opportunities pass one by.
So what are these conditions that seem not to be apparent when you meet me? From an early age I suffered from Spontaneous Pneumothorax or collapsed lungs. That condition went undiagnosed for years because, when I was a child, every teacher, my parents and doctors thought I was making a fuss and faking it, they said I was highly strung. They put me on barbiturates and that alone messed up my life-chances. All exams failed at school until I was off them but the damage had been done and I’ve been an insomniac for nearly 50 years. Eventually one lung was fixed when I was an adult but both were badly scarred – the surgeon said “…you must have been in a lot of pain in your youth…” No kidding. When at the then under-staffed and under-funded Harefield Hospital, post-op, an infection swept through the ward damaging my lungs further but I was lucky, 10 of the 12 on the ward didn’t survive it. The staff were brilliant. Stupidly, my smoking habit (I give up every so often but it doesn’t last) has added a bit to the lung carnage but not as much as I would have expected (a bit of emphysema) as my lungs were somewhat crap anyway – what a poor excuse.
I have also have Short-cycle-bi-polar disorder that makes controlling mood swings tremendously tiring. It once led to a few weeks in a secure unit and years of therapy.
Additionally, I suffer from Pernicious Anemia for which B12 is required regularly but sadly the NHS are so strapped for cash they can’t do the tests for active and passive B12, only for serum level B12 – so I take it orally every day, very much second best if effective at all.
Another problem is that I have an allergy to an unknown allergen and was once almost DOA at the hospital, before I was diagnosed, due to a full-on Anaphylactic Shock – the quick wits of my girlfriend and passers by and the expertise of the amazing NHS A & E saved me. When conscious, ever interested in things medical, I asked staff what my heart rate was when brought in – “oh, zero..” they said cheerfully. I’m ever thankful to them. So I now carry an Epipen and take antihistamine every day (it’s the non-drowsy sort but I notice I’m way more energetic if I forget to take it). The latest ailment is eczema, but it isn’t much of a problem.
I’ve mentioned all this to put things into perspective. I’m hugely lucky to be alive and regardless of all my ailments I want to work. I want to be creative, to earn a living or a partial living at least. But I can’t do it on my own. I’m incredibly grateful to all my customers who keep me ticking along but it’s touch and go work-wise and all the medical issues add up to being very, very tired all the time and exhausted much of the time to the point at which one feels suicidal on occasion. But I have a good barometer that tells me if I’m over-doing it – massive anxiety and heart palpitations. I tend to go home and rest now before that kicks in.
Perhaps a National Universal Income of some sort is the answer, I’d love it – I’d be able to work at my own pace without the constant anxiety of a never-ending cash-flow crisis and be far more productive. But a national prices policy would be required to prevent corporations simply milking the system and inflating costs. Whatever the future might hold, the current government seems intent on driving disabled people into the gutter and thence to an early grave – red in tooth and claw indeed.
Meanwhile, if you want little micro businesses like mine to survive and offer an inexpensive service to the community, please do understand that I’m only able to offer such bargain prices if, like an employer, you are able to make reasonable adjustments for the disabled. Best wishes and Stay Tuned.
9th March 2018