Boy Racer

The other week, I made it outside in my motorised wheelchair for the first time since returning from my parents’ house where I spent Christmas and New Year. It was a beautiful sunny day, though bitterly cold, and as I trundled round the block I passed three young boys, maybe eight or nine years old, playing in a front yard not far from my home.

Spying my wheelchair from afar as I rattled my way down the pot-holed street, the boys raced to the wall at the front of the property and leaned over to get a better view. As is common with boys their age, it wasn’t me they were staring at (not phased at all by the sight of someone with a disability) but rather my wheelchair, in the same way they might eagerly admire a Porsche or Ferrari if one pulled up outside of their house.

Although one lad cheekily pretended (from several meters away) that I’d run over his foot in a bid to get a laugh from his mates, they made no real attempt to engage with me, watching silently as I went past. As I approached the end of the street however, I heard bicycle wheels behind me, and one of the boys drew up alongside me on the road, matching my speed and course exactly.

I momentarily wondered whether I was going to have a problem with him; it wouldn’t be the first time someone’s taken issue with my wheelchair, though that’s unusual with children. I assumed he was just messing about but thought it best to avoid eye contact and act like nothing untoward was happening in the hope of discouraging any form of confrontation.

What I heard next, however, very swiftly assured me that I needn’t have worried.

“Vroom!” he murmured quietly.

“Vroom, vroom, vroom, vrooooooooom.”

With each successive ‘vroom’ his voice grew in confidence as he twisted his hand like a throttle on the handlebar, pretending to rev a motorbike’s engine. He glanced across with an anxious expression, no doubt trying to gauge my reaction. Seeing my ill-disguised smile at his antics, relief broke across his face and he gave me a beaming smile.

“Will you race me?” he demanded. “I bet I can beat you!”

“I bet you can too.” I told him, “This is almost as fast as my chair can go.”

“How come?” he asked.

“There’s a speed limit for electric wheelchairs that drive on a pavement,” I answered, “Like there is for cars on a road.”

“Why’s that then?” he queried.

“Because a big chair like this would really hurt someone if I bumped into them while they wer walking,” I explained to him, “especially if I were going fast when I hit them.”

“How fast does it go then?” he continued after a brief, thoughtful pause, so checking the street ahead was clear of pedestrians, I cranked the speed up to its (rather unimpressive) maximum speed of four miles-an-hour. Just as anticipated, it took a matter of seconds for him to sail right past me, deftly skidding to a halt a hundred meters ahead of me and turning back to wait for me to reach him.

By this time his friends had also caught up with us, and as they approached, the nearest boy gestured to my chair before addressing the boy on the bike.

“I want one of those. Will you buy one for my birthday?”

“I don’t know how what they cost,” came the reply, “but I bet they’re expensive.”

“About six grand,” I told him, “though you can get other kinds cheaper.”

“Six pounds?” he marvelled, “I’ve got more than that in my money box.”

“Six thousand.” I corrected, supressing another smile at his crestfallen expression.

“It looks fun,” the smallest boy blurted. “I bet it’s fun isn’t it?”

“It’s more fun than not being able to go anywhere,” I told him, “and it would be very fun to play in if I didn’t need to use it all the time, but being able to run or ride a bike is so much better.”

“Yes being able to run is definitely the most fun,” said a disembodied voice, emerging from a ginnel several moments ahead of an elderly lady who leaned heavily on a walking stick.

“Having young, strong legs to run with is much more fun than walking sticks or wheelchairs,” she informed the boys sagely and nodded amiably to me as she hobbled on her way.

As I crossed to the alleyway she’d vacated (which happened to be my quickest route home) the youngest boy said something that I didn’t quite catch prompting me to pause and ask him to repeat it.

‘I said,” he sighed, rolling his eyes in mock frustration, “I’m reeeeally good at running. Do you want to see?”

Before I could reply he was off like a shot, sprinting around my chair in several wide circles. Screeching to a triumphant halt, he clasped his hands above his head as though raising an invisible trophy, in case we in any doubt of his athletic magnificence.

Had an adult pulled the same stunt, I might well have been offended, but there was nothing remotely malicious about his display of youthful agility. It simply hadn’t occurred to a nine year old there might be anything tactless about running boastful circles around a lady in a wheelchair. I couldn’t help but laugh at his expectant expression as he eagerly awaited my approval.

“Very impressive!” I responded, and clapped enthusiastically.

“We can run too!” his friends chipped in, not wanting me to overlook their own sporting abilities.

“I’m sure you can,” I told them as I turned away smiling, “just be sure to make the most of it.”

And without a goodbye, three fast-receding figures proceeded to do just that.



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A Brief Reprieve from the Dreaded Brown Envelope

This morning, as I made my way to the bathroom, I spotted an A5 brown envelope sitting on the door mat. My heart dropped like lead inside me and I didn’t need to see the Belfast postmark to know exactly who the letter was from. As any UK readers in receipt of disability benefits will no doubt by now have fathomed it was a letter from the Department of Work and Pensions (DWP) regarding Employment Support Allowance (ESA), a welfare payment for those too sick or disabled for gainful employment.

Having been housebound and too sick to work for many years, there was a time when letters from the DWP seemed fairly routine; I knew exactly how long my benefits were awarded for and if an unexpected letter came through my door I never had cause to worry it might be anything more than proof of savings being returned, or notification of an inflation-linked change in payments in the upcoming tax year.

Although periodic reassessments were always a bit stressful (it’s humiliating having to depend on others for money and hard to be asked to dwell on the many things I can’t do when I cope by focussing on the few things I can) there was never any question of my benefits being refused. My GP and several consultants had found me medically unfit for work, Social Services assessed me as requiring daily homecare visits and the council saw sufficient need to adapt my home and fit emergency alarm cords. It was plain to anyone with an ounce of sense that, however much I might want to work, it just wasn’t possible and without assistance from the state, my health would continue to deteriorate.

Under the current government however, with reforms designed to cut the Welfare budget regardless of whether vulnerable people are harmed in the process, many disabled people now live in constant fear that their benefits may be stopped or sanctioned unfairly at any time. My medical situation hasn’t changed significantly in several years so in theory my entitlement should remain the same. I know too many housebound people who’ve had their benefits stopped however, even bedridden patients ordered to participate in Work Related Activities, to have any confidence when it comes to reassessment that my claim will be renewed. The fact that doctors directly involved in my care still find me unfit for work doesn’t mean a thing in this new system. Non-medical decision-makers within the DWP have the power to over-rule doctors’ assessments without ever having even met the patient.

When I first transferred to employment support allowance, I was dreading the transferral process having heard so many horror stories about severely ill people having their claims rejected for spurious reasons. Severe cognitive symptoms and difficulty holding a pen meant it took a full month for me to complete the forms. I worked on them every day I was well enough at the expense of all other pursuits and the physical and mental stress of doing so made me substantially sicker in the process.

I passed the first assessment with no hassles whatsoever and thought criticisms of the reforms must be grossly overstated but within weeks of passing the assessment, I was ordered to undertake a second despite not having completely recovered from the first one. As nothing had changed in the weeks since my ESA had started and too ill to complete the required forms in the timescale allotted, my only option was to send a photocopy of the original form with a letter from my doctor confirming that nothing had changed since my first assessment and that I was too ill to cope with such frequent assessments. Every assessment since then, I have simply transcribed my forms from the previous assessment with little more than the date ever being different.

Thankfully, to date, my award has always been renewed. I don’t know what I would do if it was ever rejected as I’m too ill to attend a tribunal. It typically takes up to a year for a tribunal to overturn a wrong decision only for many successful applicants to be called for reassessment almost immediately after. Since that very first assessment, I have never received written or verbal confirmation that I’ve passed any assessments. I simply assume that if my payments don’t stop within two months of reapplying that I must have been approved again. The amount I currently receive is several pounds a week less than it should be, based on savings of a thousand pounds more than I own in reality. I’m reluctant to challenge this however. I’d rather forgo the extra cash than risk having to go through yet another assessment.

The lack of paperwork means I never know how long my benefits have been awarded for. Assessments that used to come every two or three years now come at three, six or twelve month intervals with no prior warning. Every brown envelope that comes through the door now could be another assessment, a summons to a medical I’m too disabled to get to, or notification of the decision that my latest claim has been rejected. In the few seconds it takes me to open each envelope, my heart pounds and hands shake as I desperately pray that it is just a routine notification.

Thankfully this time that’s exactly what it turned out to be, but this constant paranoia about the threat of a sudden loss of income, is an ever-present reality for the chronically ill. It didn’t used to be this way for the most sick and disabled people and in a supposedly civilised country, I don’t think it ever should be.

Every January without fail since ESA first started, I have had to complete Work Capability forms in order to continue receiving benefits. This year however, I appear to have earned a bit of a reprieve. Not sadly because the DWP have realised the pointlessness of reassessing the severely disabled with such unnecessary frequency but because the system is in such chaos with such a backlog of appeals and unprocessed claims that reassessments for those already found unfit to work have been temporarily suspend. The DWP of course refuse to confirm this to applicants but a private memo leaked by a whistle-blower to the media indicates that for a short while at least, I may not have to jump through quite so many hoops to hold onto an income.

No doubt if the Tories are re-elected in May I’ll have many more assessments in the not too distant future. I still have the fun of a transfer from DLA to PIP to look forward to (thankfully the severity of my condition places me in the final group of claimants that will have to do this) but for a few weeks at least it’s been nice to do something more productive than to transcribe last year’s medical forms onto this year’s.

As I learned this morning however, the knowledge of a temporary reprieve still can’t diminish the panic I feel rising within me, when I spy another blasted brown envelope so innocently resting on my doormat.

Posted in Hidden Disability, Myalgic Encephalomyelitis (ME) | Tagged , , , , , , , , , , , , , , , , | 6 Comments

The Night Before Christmas

It’s been a quiet week for me this week as I rest in preparation for Christmas. I can’t afford to do too much in the days leading up to Christmas if I want to be well enough to have Christmas dinner with family and spend time with my siblings on the one day a year that we all get together.

While a lot of Christmas traditions have fallen by the wayside because of my illness – no Christmas parties, meals out with old school friends or last minute Christmas shopping – Christmas Eve always finds me volunteering to peel the sprouts for Christmas dinner. Other than when I’ve been hospitalised or too ill to spend Christmas with family, peeling sprouts has been my job every Christmas Eve since the top end of Primary School, one of the few useful things I could contribute at that age without getting underfoot.

Since the first year I made it to my parents house after several years where I was too ill to travel, Christmas Eve has always found me propped up in bed or on the sofa with a bag of sprouts on my knee and some carols on the radio getting into the Christmas spirit. With none of the usual festive activities in the run up to Christmas, sitting down to peel sprouts is often the first time each year that it starts to feel Christmassy. This year instead of doing them in bed I managed to sit downstairs at the table while my brother peeled the carrots and my mum made the stuffing. Small progress perhaps after so many years of illness, but as they say, ‘every little helps’.

I am very aware as I write this that for a number of emotional, physical and financial reasons, Christmas can be a difficult time for many of the friends who follow my blog. I hope that whatever obstacles you may face this Christmas, it is as peaceful, pain free and special as it possibly can be.

Wishing a very Merry Christmas to you all.

Sarah x

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Lo-Tech, Hi-Dependence

When it comes to modern communications, I am the least hi-tech person I know. I don’t own a smart phone or a tablet. I make all my phone calls on a landline and don’t even have wireless internet, relying on a plug-in modem instead. Despite this, being housebound, I am dependent on technology in a way that healthy people are not. Online banking and shopping are less a question of convenience for me as a matter of necessity. To put it simply, without internet access, I don’t eat.

So when my laptop recently had to be sent away for repair, leaving me unable to access my bank account, order groceries or continue with any distance learning or computer-based volunteer work I tried to impress on the repair shop just how urgently I needed my computer returned. Their initial response was that it would take two to three weeks, maybe more and when I told them that I simply couldn’t be without a computer that long, they responded that every customer tells them that, and I’d just have to join the queue. Unlike their other customers however, I can’t get to a bank or supermarket in person and can’t use internet-cafes or public library computers to access the internet.

Given I’m always home within reach of the laptop, and have too few friends left to make a mobile contract worth bothering with I’ve never had much need of the kind of high-tech gadgetry most of my friends and family own. In the eight years that I’ve been housebound I am lucky never to have had any serious problems with my laptop that prevented me getting on-line for more than a couple of days but having to explain to a disbelieving computer technician that this laptop really is the only internet-capable device I own (not even my ancient, stuck-together-with-Sellotape, pay-as-you-go mobile phone has functioning internet anymore) made me realise just how preposterous it is that someone so dependent on internet access doesn’t have a second net-capable device.

There is a common assumption that people who are chronically ill spend most of their time chillaxing on the sofa watching day time TV (several  friends in the past have expressed envy at me for it). While that may be true for some, it certainly isn’t true of me. The incessant bombardment of noise, bright lights, rapid movement and cognitive stimuli can be an exhausting combination, but even if I were well enough to watch TV for hours on end I wouldn’t choose to. While a day in front of the telly might appeal to those who are rushed off their feet with family and work commitments, the novelty wears of very quickly when you aren’t well enough to do the kind of things that TV normally provides a welcome break from. Unable to even start my Christmas shopping or get on with writing Christmas cards when all my addresses are stored on the computer, it took less than an hour of flicking between Loose Women and Bargain Hunt for me to come close to losing my sanity.

As a result of going three weeks without groceries, and no better way to pass the time than to watch nauseatingly clichéd Christmas films, I have therefore concluded it is high time I drag myself into the twenty-first century and buy a smart-phone or tablet in the January sales. If after Christmas my resolve should waver and I try to back out of it, feel free to threaten me with back to back episodes of Jeremy Kyle and nothing but porridge in the cupboards for another day or so. I guarantee it will have me typing “smartphones” into Google in less time than it would take you to pass me the TV remote.

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“Bah Humbug!”: The Scrooge of Halloween.

I imagine a great many people know at least one person who can be a bit ‘bah humbug’ about Christmas. Often there are very good reasons for this: health problems, financial pressures, loneliness or bereavement can all make Christmas a difficult time of year. In my case, while I’m fortunate to enjoy Christmas with my family, when it comes to Halloween I can ‘humbug’ with the best of them.

My family, as Christians, don’t celebrate Halloween. I was born on All Saints’ Day right after Halloween and my mum’s birthday is the day after bonfire night, so with three celebrations in the space of a week it really didn’t bother me that we didn’t go trick-or-treating. Halloween was never big in the UK when I was a child and the handful of trick-or-treaters that would call on us each year were too few and far between to ever really bother me.

That is, until the year of my eighth birthday:

We had just returned from the supermarket that evening to find a three unknown boys (not even wearing costumes) blocking our front path. They chanted ‘trick or treat’ and my parents politely informed them that we had nothing to give them. They called my dad a liar, pointing out the crisps and biscuits in one of the shopping bags and I informed them (rather less politely than my parents had) that those treats were for my birthday, which was clearly more important than Halloween and so they couldn’t have them.

As soon as my shopping-laden parents disappeared inside the house, one of the strange boys snatched the bag of treats out of the open car boot and tried to run off with it. My quick-acting older brother wrestled the bag away and my birthday was saved but I was outraged in the melodramatic way that only a not-quite-eight-year-old can be, that my birthday celebrations had been so very nearly ruined.

Other than that incident however, trick-or-treaters were typically very friendly, and would wish us a good evening even though we had nothing for them. We never had any trouble in retaliation for the fact that we rarely answered the door on Halloween, so as long as trick-or-treaters were polite, I never minded the interruption.

That is, until the year I became bedridden:

The trouble with being bedridden is you cannot answer the door no matter how much you might want to. I had never realised how terrifying Halloween can be for elderly or disabled people until the first year I was alone and bedridden. Listening to a succession of strangers, mostly older teenagers, hammer on my door, rattle the handle like they were trying to get in or yell through the letter box that they knew I was home as they could see my lights on, left me feeling under siege in what should have been the safety of my own home.

After every caller I would lie in terrified silence, jumping at every tiny sound not knowing if they’d gone away. Had they actually followed through on their occasional threats to throw eggs at my windows or shove fireworks through the letter box, there’d have been nothing whatsoever I could do. Several times I came close to calling the police but didn’t want to waste their time if the threats were empty and it really was intended to be ‘just bit of fun’.

Even when I was well enough to sit in the living room but still too disabled to answer the door, I would dread Halloween, hiding away in my bedroom at the back of the house, with the rest of the rooms in darkness in hope that if I stayed invisible and quiet, no one would call at my house.

Halloween is immensely popular in the area I live in, but in recent years a darker side seems to be emerging. When the police offered signs for elderly and disabled people to put up in their windows asking trick-or-treaters not to call, those houses became prime targets for pranksters and vandals. With no regard for the personal circumstances of the households they are visiting some of the parents of trick-or-treaters now seem to think it obligatory for strangers to have something to give to their children. (I often wonder what those parents would do if I approached the same child in the street the day after Halloween and offered them a slice of my birthday cake.) I’ve heard several stories from friends about verbal-abusive they’ve received from trick-or-treaters and a few years ago I had a similar encounter of my own.

I was waiting in the car en route to a rare meal out for my birthday while my mum and brother popped into a relative’s house on an errand. A gaggle of trick-or-treaters came chattering down the street and the mums stopped on the pavement while the kids headed up the driveway to knock on the door.

“I’m sorry sweeties,” my mum said to the three tiny skeletons that stood shivering on the doorstep, “I’m afraid I’ve nothing to give you.”

Thankfully she closed the door too quickly to hear the expletives erupting from the women on the pavement about the ‘mean old cow’ who’d denied treats to their children. Offended, ill and in pain I ungraciously replied that having made the five hour drive from London that afternoon to see her chronically ill daughter, remembering to buy sweets for strangers’ children probably hadn’t been high on her list of priorities.

I don’t think they heard what I said but they clearly realised someone had spoken and as they looked around for the source of the disembodied voice, one of them noticed my brother had left the sliding side-door on our car ever so slightly open.

“Stupid b**** has left her car unlocked,” one said, walking down the driveway, “we should have a look inside and see if there’s anything worth nicking.”

It was after dark and the car was unlit but it hadn’t previously occurred to me that they wouldn’t have seen me sitting there so I flicked on the internal light to let them know the car was occupied. Judging by the shriek the woman gave however, as she scooped up her child and raced down the driveway she must still not have seen me, thinking that the car lights had come on of their own accord in response to her comment. She didn’t slow down until she reached the next house, and though I hadn’t intended to scare her, I couldn’t help taking a little guilty pleasure in the thought that she got more of a Halloween fright than she had bargained for in return for her incivility.

So if you or anyone you know will be going out trick-or-treating remember, there are a lot of religious, cultural and financial reasons why someone may not have anything for you this year, but however stingy it may seem to you, please still wish them a good evening anyway. And if you should come to a house where the lights are out, there’s a ‘no thank you’ sign on the door or no one answers on the first knock, please, for the sake of vulnerable people, just move along quickly and try your luck elsewhere.

And ‘Bah Humbugs’ aside, here’s wishing a safe and happy Halloween to all of you.

Posted in Faith, Hidden Disability, Myalgic Encephalomyelitis (ME) | Tagged , , , , , , , , , , , | 14 Comments

Cat Magnet

My plan for this weekend was to get a new, carefully crafted and informative article written for the blog. Those plans have been thwarted by my new next-door neighbour’s cat which must have snuck in to my flat when I was paying the window cleaner this lunchtime, so a hastily written missive will have to suffice for now.

I don’t know where it had been hiding between getting in to the flat and appearing in my livingroom but I was just settling down with my laptop  to get on with some writing when the door swung open and in walked the cat. I still can’t decide which of us seemed the more surprised to notice the other.

Twenty minutes later, having closed every other door in the flat and found something heavy enough to wedge the front door open, I finally managed to shoo it out only for it to run back between the wheels of my wheelchair as I paused on the doorstep to greet two elderly neighbours. The cat seemed to have completely dissappeared and it took ten minutes for me to notice its whiskers poking out from under the bed. Nothing I could do to coax, scare or even poke it out with a walking stick could convince it to leave again.

Thankfully as I was reaching the point of total collapse a neighbour noticed my front-door ajar and shouted through to ask if everything was ok. He gallantly volunteered to extracate the now hissing, spitting cat, getting badly scratched in the process, while I sat there useless and apologised profusely for all the mobility aids, emergency drinks, snacks, medication, wayward tissues and other detritus stashed under the bed that he had to rummage his way through to get to it. (You don’t realise just quite how much embarrasing clutter can acrue under one bed until a bloke you barely know is lying on his stomach with his head stuck under there.)

Thankfully the cat has gone (at least for now) and I’m off to bed now to crash for the next day or so, sniffling and scratching with allergies from the cat hair all over my bedroom, with the window slightly open to get rid of the catty smell. (Please don’t climb back in through the window! Please don’t climb back in through the window!)

Looks like I’ll have to dose up on anti-histamines until I can sweet-talk a carer into pulling everything out from under the bed and deploying a hoover to get rid of the cat fur. Lets hope that that’s the only thing my feline friend has left under there for me ;0)

I hope this post finds you all as well as you can be.

Yours sneezily, till next time.

Sarah x

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Disabled People Can Do Anything

This July and August have been a summer of sport in the UK, with the Commonwealth Games in Glasgow followed by the European Athletics Championships in Swansea. The Glasgow games in particular received a lot of media coverage and a lot has been made of the fact that (unlike other sporting events which host ‘parallel’ events for disabled athletes) the Commonwealth Games integrates disabled and non-disabled events into a single tournament.

Coverage of these games has rekindled talk of the ‘Paralympic legacy’, a phrase in common usage during London 2012. The London Paralympics were predicted to herald a new era for disabled people in this country, validating them as equal and valuable members of society and fostering greater respect for their achievements.

While the Paralympics may have had some success in raising the profile of disabled sports, experiences of many disabled people since then – welfare cuts, increased hate crime and the proliferation of scrounger/skiver rhetoric – reveal a very different story. If anything, the London Games have caused public perceptions of disability to become even more polarised. While ‘superhuman’ Paralympians are praised for their skill and fortitude, the majority of disabled people are viewed as a drain on our economy, at times even labelled lazy, malingering fraudsters. As I recently heard someone comment: if a swimmer with no arms can break a world record, what excuse do other disabled people have for staying home and claiming benefits?

This attitude has been particularly damaging for people with invisible conditions like ME, rheumatoid arthritis, fibromyalgia or Crohn’s disease which have few outward symptoms to indicate disability. Yet each of these conditions can be catastrophically debilitating, often more so than many more obvious disabilities: a healthy wheelchair user (with access to suitable transport and correct mobility aids) can generally work, travel and enjoy an active social life, but invisible chronic illness may prevent an individual from doing any of these.

Thus by raising the benchmark of what disabled people are expected to achieve, the Paralympics may inadvertently have increased the stigma directed towards those whose limitations may not be immediately obvious.

Periodically, the media shares inspirational stories of people who overcome the obstacles of disability to achieve incredible success. Such stories invariably feature the tagline, ‘it just goes to show that disabled people are capable of anything they put their minds to’. However admirable the sentiment, as someone living with a chronic illness, every time I encounter those words it feels like something inside of me dies. Because there are a million things that I’d love to do despite my disability, and if determination or positive thinking were enough to make that happen, it would be my face you’d be viewing on the national news.

I’ve lost count of the number of times a neighbour, friend or carer has cheerily suggested that I write the next best-seller, earn a PhD, establish my own business or join a wheelchair basketball team having seen other disabled people featured for these on the news. And while it’s great that the achievements of high achieving individuals (disabled or otherwise) are recognised in the media, the varying nature of disability means that not every disabled person can be held to the same expectations.

This is no reflection on their determination or individual character however; it simply means that their particular disability limits them in ways that makes their daily achievements seem small and unremarkable to healthy individuals.

As some one who lives with severe ME, I depend on a wheelchair not simply because I cannot walk but for the same reasons a chemotherapy recipient or pneumonia patient might require a wheelchair: Because I’m sick. Incredibly so. And no matter how much I aspire to work, play sport, or lead a ‘normal’ life like other disabled people, the nature and severity of my symptoms mean that at the current time that simply isn’t possible. No amount of determination or positive thinking can imminently change that fact.

Yet, other than the wheelchair, there are no outward signs of anything wrong with me, so people frequently assume I should be capable of the same recreational and vocational pursuits enjoyed by healthy disabled people, mistaking my failure to do these things as a matter of personal choice and lack of motivation.

While not wanting to sound defeatist, or dismiss the achievements of Paralympic athletes, it is highly unrealistic to set ‘Paralympic heroes’ as the benchmark for disabled achievement. If I loaned my wheelchair to a healthy, sport-loving neighbour, would they be expected to beat David Weir in a marathon? Could they outswim Ellie Simmonds or outrun Jonnie Peacock? I very much doubt it. If most able-bodied people couldn’t match a Paralympian, why would the majority of disabled individuals be any different?

While it’s true that many disabled people display incredible capabilities, and no disabled person should be avoidably held back from achieving all that they are capable of, the implication of suggesting that all disabled people can do anything they put their minds too, is that those who don’t achieve greatness simply aren’t trying hard enough. This is a very damaging message for people living with chronic illness, for whom just making it through the day can sometimes be a major accomplishment.

When living with disability, the greatness of our achievements often bears very little relation to the effort we put into them. For someone with depression, ‘just’ getting out of bed in a morning may take superhuman effort. For someone with Ehlers-Danlos Syndrome, ‘just’ walking to the corner shop might show greater fortitude than another person’s marathon. And for someone who is bedridden, ‘just’ summoning a smile for their carers in the midst of their own unimaginable suffering, might be an act of genuine selfless courage.

So let’s celebrate the extraordinary, ordinary achievements of thousands of everyday heroes, unacknowledged and unnoticed in hospitals and homes all over this country. Because their accomplishments might never be considered newsworthy, but they’re certainly praiseworthy. Achievement comes in many forms and the daily efforts of many people in the face of gruelling chronic illness can put even Olympic champions to shame.

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