My disability affects me everyday (Picture: Rachael Mole)
My kettle broke a few weeks ago. It’s one that looks a bit like an espresso machine, where you can boil enough water for just one cup.
It’s snazzy, but it has one key feature that a normal kettle doesn’t: it doesn’t dislocate my wrist.
A heavy one full of water is a safety risk for me, so as someone fuelled by tea, this ‘luxury’ item is a necessity. But it also comes at a price – a price that many disabled people like me have to grin and bear.
This kettle, the most basic model of its kind, cost me £45. When it broke, I realised just how much I spend each month on tools that help me with my independence.
My disability affects me everyday – from how I get dressed, to cooking, cleaning and washing my hair.
So when you factor in everything that allows me to live independently – my medication, taxis, food delivery, and added energy costs from unique appliances – it’s easy to see how this figure tallies up.
It’s my disability tax.
Disability tax, or the disability price tag, is the added cost that every disabled person has to pay to simply exist. Disability charity Scope estimates this expense to be £583 a month. For many, it’s more, and when you consider lost earning potential due to inaccessibility, this figure is low.
I am one of around 14.6million disabled people in the UK. I’ve been sick since I was 12 – it was then that I first started dislocating my joints, and blacking out when I stood up.
It would be eight years before I was diagnosed with Ehlers-Danlos syndrome, Postural Tachycardia syndrome and mast cell disorder. Now, I take 40 tablets everyday.
Ehlers-Danlos syndrome is a connective tissue disorder – the collagen in my body is faulty, meaning my muscles work overtime to stabilise my joints. I dislocate at least one joint every month, and sublux (partially dislocate) something daily.
Postural Tachycardia syndrome is an autonomic nervous system disorder, that means (without my medication) whenever I stand up, my heart rate goes up to 160 bpm, and my blood pressure drops – causing me to black out. Even now, though this is controlled with medication, I live with chronic fatigue.
Mast cell disorder is a histamine disorder, where my body experiences allergic reactions – causing hives, swelling and low blood pressure.
My disability is ‘invisible’, too, which makes it hard as there is often a burden of ‘proof’ put on my shoulders. It is exhausting.
The number of times I have been accused by doctors, social care and disability services of faking it, told to get over it or suck it up, means every time I spend money on the disability tax, I now have that voice in my head too, asking: ‘Do I really need this?’
There is a frustration that comes with the balancing act I have to do every time I justify why I need something – and a sense of sadness, that even now, I have to convince myself I am ‘disabled enough’ to need it.
But the reality is this: my disability isn’t invisible, I am. When I have a bad day, I don’t show up. I reschedule or delegate work. I have to rest, or I burn out and lose my independence.
I disappear, and it’s these costs that make sure I reappear because they give me pain relief – and it’s extra energy saved on small tasks that, when stacked up, make a huge difference.
Still, not working means I lose out on money; money I need to cover my hefty expenses.
I pay £108.10 for a pre-payment prescription to access my medication each month. Then £20 on two months’ of vitamins that my GP won’t prescribe me.
Then, I spend £120 a month on taxis because, if I stand up still for too long on public transport, I black out.
I fork out £140 for acupressure to stop my muscles from seizing, and to help with the pain of bad dislocations.
There’s also the £100 a month extra on top of weekly food shops that I spend on delivery.
Add on replacing adaptive tools that come at a premium – like kitchen aides and cleaning tools, as well as the surplus rent for being in a town centre, ground floor flat, which I can access easily – and it’s easy to count the quantifiable costs that come up each month.
But this isn’t the only tax disabled people face, either.
I can only work part-time, running a non-profit called SIC, which helps other disabled, chronically ill and neurodiverse people access career support.
Like many other disabled people, my only accessible workplace is the one I created for myself. I work from home, around my energy levels, only travelling to work once a week.
I take a small wage from my company as it’s growing, but god only knows how much money I’ve lost from being unable to work full-time, due to inaccessible offices and employers.
To view this video please enable JavaScript, and consider upgrading to a web
browser that
supports HTML5
video
Around 47% of disabled people are unemployed in the UK, and even when we are employed the pay gap is vast, with non-disabled workers being paid 17% more than their disabled peers.
It doesn’t surprise me then to hear that nearly half of those in poverty are either disabled, or living with someone who is.
It’s encouraging that Chancellor Jeremy Hunt is raising benefits, including Personal Independent Payment (PIP), in line with inflation – but this isn’t going to happen until April 2023, which will be too late for many.
Access to Work, the scheme meant to support disabled people to be able to stay in work, was found in 2017 to be largely unfit for purpose, and waiting times of up to six months have recently been reported for people waiting to hear about decisions on their PIP claims.
I challenge the Chancellor, and policy makers, to consider how disabled people are meant to get into, and stay in, work when the systems that are meant to support us there are inadequate.
Otherwise, it looks like disability tax is here to stay.
With the cost-of-living, too, these costs are only going to get higher and higher. I can make it through the winter, many won’t.
The extra things I have to spend my money on each month won’t go away, because my disability isn’t going away.
Do you have a story you’d like to share? Get in touch by emailing [email protected].
Share your views in the comments below.
MORE : Everyone should be paying attention to Disability History Month
Disability tax, or the disability price tag, is the added cost that every disabled person has to pay to simply exist.
