Solving the Wrong Problem.

Recently this video did the rounds: https://www.youtube.com/watch?v=mVHpRnTS4TM

On the surface it looks incredible; someone went to the trouble of developing a wheelchair that could climb stairs, thus solving all problems around inaccessibility & eradicating ableism. But then you start to think about it.

The wheelchair is shown going backwards up some steps at a snail’s pace. The stairs are not rain-soaked & are in perfect condition, & miraculously there isn’t another pedestrian barging past at an inopportune moment. As for bad weather the advert claims the wheelchair can handle it, but doesn’t really show it. In fact, it doesn’t show the wheelchair going back down the flight of steps at all. There is also no clear mention of how much power climbing the stairs drains from your battery.

So, the technology is flawed, but with time that could be corrected. At that point we could eradicate all ramps & lifts, & historians could keep their piles of mortar & stone just as they want them without having to deal with something so petty as equality. But wait…

Sometimes disabled people don’t use wheelchairs. Climbing stairs with a severe visual impairment is, by all accounts, bloody terrifying. Similarly, people who have mobility issues or chronic illnesses but can walk may still find stairs problematic. There’s no way I could carry my rollator up a flight of steps; I would still need level access. A stair-climbing wheelchair gives businesses an excuse to maintain their inaccessibility because you should just get a stair-climber. Of course, getting one of these presents problems of its own.

It’s virtually impossible to find out how much one of these wheelchairs costs, but it will not come cheap. With standard powered wheelchairs often reaching several thousand pounds for the basic model, even second-hand, it’s almost certain that the price will be beyond the means of most disabled people. For everyone who couldn’t afford the technology, ramps & lifts would still be required.

So, the stair-climbing wheelchair would only benefit a fraction of the disabled community & access requirements would still exist. It’s an brilliant idea, surely, until you start contemplating the ethical issues that surround this wheelchair.

For starters, when designing things with disabled people in mind, it might be useful to actually speak to us. Even an introductory discussion with a handful of disabled people would have raised basic concerns around the cost & the limitations of the design before so much money was sunk into the project. It would also have quickly brought to light that the wrong problem was being addressed.

Instead of designing expensive, flawed products to get some disabled people into a building, placing the effort & financial onus on the individual, it would make far more sense to make the building accommodating of all disabilities. While this initially costs more than 1 wheelchair, more than 1 customer would be gained. The responsibility of businesses is to serve their customers, and being accessible is a part of that responsibility. Putting the onus on the people who already suffer at the hands of discrimination is just morally wrong.

Quite frankly, this entire project & every other like it, that refuses to work with actual disabled people or to listen to us, is as ableist as businesses being inaccessible in the first place.

Taking a Stand.

If you use Twitter and you haven’t seen the #AmbulatoryWheelchairUsersExist campaign then I’m offended, because that means you aren’t following me.

In all seriousness, that little phrase is being used across social media to raise awareness of wheelchair users who can sometimes stand and walk, usually with walking aids. I myself have a rollator, which is basically a cross-over between a Zimmer frame and one of those shopping baskets on wheels that are a pre-requisite condition of being a pensioner, with a seat to perch on when needed. This means that on the occasions where I am only going around the corner to post a letter or buy a pint of milk, I’m not dependent on my wheelchair.

There is an attitude that ambulatory wheelchair users are lazy attention-seekers, faking the severity of their illness to obtain additional financial support. The reality of the matter is that, as with any illness, some days are going to be better than others.

The first time I used my rollator was on a wild trip to the supermarket to pick up a few basic sundries. It was undeniably strange to feel the pavement beneath my feet; I was acutely aware of the bumps in the pavement, and the hotter temperature of the concrete exposed to the sunlight. I managed to maintain a slow, steady pace down the hill and round the shop, revelling in the luxury of being able to see what items were on the top shelves, and not have to become a contortionist to reach the items I wanted. I could even reach to the back of the refrigerator to select the freshest milk.

I went to the self-checkout, paid, and placed the packed shopping bag on the seat of my frame. Halfway up the hill a strong gust of wind sent my shopping sprawling across the street, and as I bent down to collect everything as quickly as I could, I was tutted at for being in the path of passers-by and absolutely no one offered to help. It was strangely reassuring to know that I was as invisible on the frame as I was in the wheelchair.

Since then I have used the frame on an almost daily basis, and on the whole I have enjoyed the freedom it has given me as single steps and curb drops are now climbable, if a little difficult. The only real difficulty I have faced is that, just like in the wheelchair, I am expected to go around other people, prams, groups stopped on the street, and even badly parked cars. In the wheelchair this is incredibly annoying, can greatly slow my progress, and often leaves me vulnerable to verbal abuse. On the rollator there are an extra two steps needed to move out of the way of someone who absolutely needed to respond to a message that instant, the rest of society be damned. Add up the number of times this can happen in one small street and I can end up walking an extra 10 – 20 steps. This sounds insignificant but with each extra step my muscles hurt more, my dizziness increases, and my body temperature rises at an alarmingly uncontrolled rate. This is one of the main reasons why I simply cannot use the rollator over long periods or distances without risking a serious relapse.

I might leave the flat one day in the wheelchair and then be using the rollator the next. This does not make me a fake, nor does it make me heroic for putting up with the pain. I’m just trying to live a little, and I am far from the only person doing so. Ambulatory wheelchair users do, in fact, exist, and we are going places (albeit very slowly).

Doctor Google.

As a nutritionist working in medical research, one of the banes of my existence is Dr Google. “I read an article that said-”, “But I found on the internet that-”, “I saw a video that suggested-”…

In this day & age it goes without saying that you cannot trust everything you read online (except for this blog, obviously), & that the advice of experts is even more valuable among this information overload. So, when I hear medical professionals bad-mouthing those who turn to the internet & self-diagnose, on many levels I agree with them.

However, perhaps we are too quick to judge the people who do this.

While I had an unusually quick diagnosis of Myalgic Encephalomyelitis (& that is not to say that the process is quick or easy even in these cases), I would go on to face other struggles. When I started showing symptoms of depression, complete emotional breakdowns, self-harm, & even a suicide attempt amongst them, I was refused a diagnosis of depression. It was just low mood. I was doing it for attention. Worst of all, these were symptoms of ME, a disease that was clearly all in my head. Apparently, a diagnosis would cause me to express more symptoms via some kind of placebo effect, but without a diagnosis I couldn’t access proper treatment. It was left to spiral further & further out of control until finally I was granted access to medication; medication I still use to this day.

A few years later I was experiencing sickness to the point where I couldn’t even keep water down, & was getting pains so furious it made it hard to breathe. I was given a diagnosis of gastroenteritis, even when the doctor admitted that the symptoms didn’t match this diagnosis, & I was sent on my way. Of course, the problems continued, & it took a junior doctor who hadn’t yet been trained to view all patients as stupid to do extra blood tests, which showed abnormal results. As I went for an ultrasound scan the nurse waxed lyrical about how I didn’t have gall stones, despite the symptoms & the blood test results pointing to exactly that. Surprise or the century; I had gall stones.

When they accidentally left a gall stone behind after removing my gall bladder because they decided not to perform a simple test, I returned with the same symptoms. I was disbelieved on all levels, & a doctor who never met me had my saline drip removed as he was adamant I should just drink more water. Drink more I did, but it only meant I vomited more back up. I was accused of being a fake and almost forced out of hospital still suffering symptoms which I was apparently making up, before finally a radiologist found the problem. A gall stone had been left behind, which I had been telling them was so for almost a week.

Currently I’m trying to get another diagnosis for something I’ve been dealing with for almost 11 years. It runs in the family & not only do I express the symptoms, but I’ve followed the exact developmental patterns it caused in my mother. GP after GP after GP refused to believe me, telling me it was just puberty, even at the age of 22. I finally got a hospital referral where the doctor believes it to be a psychological problem, & they “forgot” to give me another appointment until almost a year later I had had enough. I am still waiting for them to even do the diagnostic test.

We know our bodies best. We know how they normally feel & how they shouldn’t feel. We know when we’ve had enough. I have immense respect for the medical professional but when patients are sent away without answers, support, or even the hope of support in the future, of course they turn to the internet for help. People used to turn to witches or priests in exactly the same capacity.

I will follow the advice of a medical professional, but that presumes that I am given advice to begin with.

The Corridor.

When you start a new job there’s a lot to think about; being in the right place at the right time, sorting out the paperwork, & introducing yourself to the total strangers you’ll spend 35 hours a week with. If you are disabled then there’s even more to think about. Unsurprisingly one of the things that concerns disabled employees most is accessibility.

I’m lucky to have an employer who took great care to ensure that I had all of the tools I would need to do my job. In fact, the only part I cannot do independently has nothing to do with my disability, & has everything to do with the fact that even when balanced precariously on a stool, I’m too short to reach the top shelf of the 2 metre tall cabinets.

In fact, the biggest obstacle to overcome didn’t occur in the office at all, but in getting to & from my work.

The building I work in is huge. It has 8 floors, not counting the secret underground laboratory where we’re teaching rabbits to wear flat caps & talk with a Yorkshire accent. Despite spending many hours in there as a student, & now working there, I get lost looking for anything beyond the rooms we commonly use, & the café which is nowhere near the rooms we use, but I just so happen to know where it is anyway. Oh, & then there’s the great big hospital we’re attached to.

There are 3 reasonably-sized lifts available to everyone who uses the building. Most people were more than accommodating when it came to lift access, but it only took a few arrogant tossers for me to spend 5 minutes waiting for the lift to come back around only to find it full again. I left enough time to account for this, but even then, I could be late into the office.

I raised this as an issue & much to my surprise, instead of being called a whinger I was granted access to a fourth lift that only people with a key could get to. You had to have the key to enter the corridor, & then had to use it again to operate the lift. It basically guaranteed me a spot in the lift whenever I wanted.

The problems arose because the cleaning staff, who were based along this new route, were not accustomed to wheelchair users. The corridor was frequently blocked. I asked politely to keep a route clear but was told it couldn’t be helped, so I told them that they would move it or there would be trouble. Naturally there was trouble, when I shared this photograph with the building manager:

The lift blocked by crates, boxes, trolleys, & all manner of cleaning equipment.

In all fairness to the team, it’s not happened since. Although, as it transpired, I had won the battle but not the war.

Next came the cleaner who, with good intentions, asked if I needed help getting through the double doors. I politely declined but was ignored, & the door was wrenched from my grasp resulting in a minor shoulder injury. Some might say I should just accept the help, but I despise the notion that I am not human enough to know my own capabilities or that my words are just hot air.

Even after this, my biggest obstacle was yet to come.

It was a Friday night & I was leaving the office. I entered the lift alone, my key dangling around my neck on a lanyard, which I used to select Floor 4 (which is one of the ground floor entrances alongside the other on floor 7. As I said, it’s a weird building and it’s also on a steep hill). The lift stopped at floor 5 and a porter pushed a large trolley into the lift.

“Where are you going?” he asked as if he couldn’t see the number 4 glowing.

“Floor 4,” I returned.

“No, you’re not,” he smirked.

“Um…yes, I am,” I responded sharply.

“There’s no way out there.”

“Yes, there is.”

“But you need a key.”

“You mean like the one dangling around my neck that you need to be able to operate the lift we’re in?”

Apparently, he was only being nice. He only asked a question because he had assumed that I didn’t know where I was going in the building on the route I used twice daily, 5 days a week. This fails to address why, once I’d told him where I was going (as if that was any of his business in the first place), he persisted to ignore my responses and undermine me with blunt statements.

Encountering this attitude once was bad enough, but it happened a second time, & a third time, & then a fourth. Before long I’d lost count. Despite the plethora of evidence which included my key, my staff badge, & buttons already pressed in the lift, I was frequently told that I didn’t know what I was doing & I shouldn’t be there.

My employers are doing all they can to stop this. All staff undergo extensive Equality & Inclusion training, & there are working groups & committees in place, several of which I am a member of. Signs have gone up by the lift alerting people that wheelchair users can use this route, asking others to be considerate. None of it has worked.

I do not blame this on my employer, nor is it a reflection of their attitude. It is instead a reflection of the general attitude towards disability displayed by the populace. It is the culmination of the stereotype that we are helpless individuals worthy only of pity. It stems from the hatred we face for relying on government funding that allows us to access the equipment we need to be able to work. Even if it is subconscious, in just one short corridor, I have encountered more ableism than I ever will in my actual job.

There is, however, one small thing that they have not accounted for; tyre tracks on their shoes will be the least of their worries if they get in my way.

The Rejects: 6 Things People With Chronic Fatigue Syndrome Want You to Know (But Are Too Exhausted to Tell You).

At one time the UK parliament took a break from arguing about how we could slip discreetly from the EU like an introvert leaving a party at 9 pm, and instead argued about a disease called Chronic Fatigue Syndrome (CFS). This illness is also known as Myalgic Encephalomyelitis, a slightly more imaginative if unpronounceable name. This being the 21st century, where everyone’s opinion can be shouted in cap locks across the internet regardless of experience or expertise, social media was flooded with posts discussing the illness. Of course, not many people remembered to ask the sufferers of CFS, because that’s too obvious or mainstream or something.

At 14 years old a virus decided that my brain was the perfect vacation spot, and through a series of unfortunate events that even Lemony Snicket would have trouble imagining, I developed Chronic Fatigue Syndrome. It’s time for someone with experience to have their say, albeit with naps between each paragraph.

  1. CFS is Real.

I have lost count of the times I have faced accusations of faking my own illness to play truant from school or work, to gain access to prescription drugs, to get disability payments from the government, or simply for attention. I have also lost count of the number of times I have been told that the disease is fake, or purely imagined by all those said to have the disease, despite an ever-growing body of evidence suggesting otherwise. Why listen to scientists, though? It’s not like they’re experts or anything.

Social services even became involved when an anonymous accusation was alleged against my parents suggesting that they were making me use a wheelchair unnecessarily to obtain extra benefits. Fortunately, social services neither had the time nor the resources to look into such a petty and under-evidenced claim, but the experience was perturbing all-the-same. This had a large, soul-destroying impact on a teenager in the midst of puberty. My poor parents.

  1. It’s More Than Just Needing a Nap.

CFS, aside from being the most unimaginative name ever, does give the impression that sufferers of the condition get a bit tired and need to follow the sleeping schedule of a cat. Yes, I get really, really tired, really, really easily. As in, sat-up-and-opened-my-laptop easily. However, there is also the joint and muscle pain, headaches, dizziness, nausea, sickness, muscle weakness, cramps (holding a pen is a fun way to induce hellish cramps, which won’t have any effect on my writing career at all), irregular appetite, sleep disturbance (ironic), itchy skin and eyes, muscle tics, passing out, short term memory loss, and poor concentration to contend with. What was I saying?

To summarise, it is a debilitating condition forcing many sufferers like myself to use walking sticks and wheelchairs, and in some rare cases can even prove fatal.

So, to encompass the nature of CFS in a name, (and what, after all, is in a name), it would have to be called Chronic Fatigue, Pain, Dizziness, Nausea, No Sleep, Brain Fog Syndrome, which is a lot less catchy, and a lot more tiring to write.

  1. Yes, I Do Need Those Pills.

If you have managed to stomach any recent news reports, you might have encountered news of an “opioid epidemic” sweeping America. One of the main talking points is whether people with chronic pain such as fibromyalgia, arthritis, and CFS should have access to these drugs. While I personally have had very limited experience using opioids (but the few times I have, man I felt good), I have at least been able to access alternatives that might not be affordable were they not on the NHS. It should also be noted that some of prescriptions I use are to manage the side effects of other prescriptions, in what I like to call “pres-ception”. It once got so bad that the shelf in the medicine cabinet collapsed, I kid you not. One of my favourite jokes is to claim that I am a human maraca because of the number of pills I take on a daily basis. What that actually turned out to be was gall stones, but that’s another story for another day.

Here’s the thing; on occasion I am unable to take these medicines as most of them require ingesting with food to prevent stomach ulcers. If I can’t eat, or throw up everything I eat, I can’t get the medicines down me. When I haven’t been able to take my medication, I notice it pretty quickly. On these days sitting upright, even propped up by pillows, is exhausting. Even going to the bathroom is practically impossible, which has led to one or two awkward scenarios.

  1. No, I Don’t Just Need to Exercise More.

Here’s the thing; I was prescribed “exercise more but with medical jargon” by my physiotherapist. Being the naïve teenager I was, thinking that the medical professionals would know how to treat my illness, I followed her instructions to the letter. It worked so well that I went from being able to walk around outside with only the need to take occasional breaks, to having to use a wheelchair when I want to travel more than a few metres.

Nor am I alone in this, as multiple studies have found that these exercise programmes tend to make things worse, not better.

  1. It Varies From Person to Person.

CFS would be a lot easier to study and treat if it didn’t vary like the British summertime climate. Some people just need to take breaks or naps every so often, and some people can’t sit upright unsupported. I’m somewhere in the middle, using a powered wheelchair but able to work, and I can hobble around the flat leaning on walls, furniture, and my husband.

I am often compared to others who have had CFS, and people will even try to shame me by saying that “X” was far more active than me when they had CFS, or that “Z” had it far worse and I don’t know how lucky I am. The reality of the matter is that the wide variability of the disease means that knowing one person with the illness does not give you enough experience to make judgement calls on others.

  1. We Hate the Fakers as Much as You Do.

The debate as to the existence of CFS can be largely attributed to the fact that, as yet, there is no medical test available that can distinguish who has and hasn’t got the illness. There are no biomarkers that can provide distinct answers. This means that people are able to fake it, knowing full well that their lie can’t be undermined by pesky scientists. It raises questions as to how to tell the fakers and real patients apart.

The fakers (I like to replace the A with UC) give the rest of us a bad reputation, and have made the lives of those of us suffering from the condition significantly harder than they already are. So, if you think the fakers piss you off, imagine being in our shoes (or wheels).

A Legitimate TED-Talk.

Disclaimer: I wrote this a couple of months ago before I had even been offered the opportunity to deliver a TEDx talk, & it was scheduled for release at the time of writing. Therefore the timing of the post is purely coincidental!

Anyone under the age of 35 has probably been lectured about how technology is sucking out our souls through our eye sockets and we’re only one grammatical error away from Skynet doing its thing. Some of us will even have received the lecture via social media, the irony of the matter being lost entirely on the person posting their expressive art about technology’s role in the destruction of humanity online. Technology gives us cancer, and big corporations use it to brainwash us into buying their products, and we’re losing the ability to socialise properly, and it’s making us paranoid etc.

Technology is not all bad. How many lives have been saved because instead of having to find the nearest phone box, someone could call an ambulance at the scene? How much more data can scientific studies collect and analyse for even better results? How many people have received earlier diagnoses of progressive diseases that would have just killed them before? How much progress would have been made in the fight against ableism if disabled people didn’t have technology to help them voice their concerns?

Chances are that even the most disabled among us can still use technology. New apps and programs become available all the time that read out loud to the visually impaired, or translate between English and sign language for the deaf, or give someone who is unable to speak a voice. Social media has allowed people with the same disabilities from across the globe to connect to each other, so even the most isolated patients can find others like them and support each other.

Cameras are very useful for providing physical evidence of discrimination such as blocked access routes, and also the abuse we can receive when asking people not to block access. Once posted online the rest of the world can finally see for themselves the difficulties disabled people face in their day-to-day lives. Sometimes it can even result in legal action.

Perhaps most significantly of all it can be extremely difficult to organise a demonstration against ableism due to poor access to transport, and the fact that all of the affordable hotels in the area will only have one accessible room apiece, which will be quickly booked up. Technology has instead allowed us to break the taboo around disability and discuss it properly, highlighting and resolving issues, and raising awareness of the fact that we are also humans.

Nor can disabled people easily sue for discrimination due to the difficulties in finding employment due to access and transport issues, and also because many courts lack wheelchair access, even going so far as a have steps up to the witness box. Technology has allowed us to shame ableist actions to the point where public outcry has forced government leaders to tackle the issue.

Technology does have its drawbacks, but the truth of the matter is that technology has helped to improve more lives than it’s ruined. There was a point in history when reading and writing was considered unnecessary technology, but now those abilities are almost sacred to us. How much of technophobia is actually due to a genuine fear of technology, and how much of it is simply a fear of change?

 

Braveheart on Wheels.

There are lots of assumptions made about disabled people. It’s assumed that we are stupid, have no desire for independence, are lazy, ungrateful, uncooperative, and only our mothers could ever love us due to our needs. It’s assumed we’re not educated, employed, or even able to break the law (disclaimer: I am not a criminal, I’m making a point, please don’t call the FBI). There is, however, one assumption that to me seems the most problematic, and is responsible for a lot of the disagreements between able-bodied and disabled people: our mobility aids are seen as a prison.

Less than a year after contracting viral meningitis I was told by a physiotherapist, who at the time was advising my parents to buy me a wheelchair, not to become overly dependent on said wheelchair. It instilled within me a fear of my wheelchair and I used it as little as possible, unable to admit to myself when I really needed to rest. I almost seemed to be in denial that I was ill in the first place. That, among other factors such as being denied the right to drop some classes including gym and dance, and the very same physiotherapist pushing me through Graded Exercise Therapy far too quickly, led to the deterioration of my health. I spiralled out of control until I was begrudgingly using the wheelchair every time I left the house.

At this point I faced a difficult choice, neither of which could be defined as right or wrong. I could “give in” to my illness and embrace the use of a wheelchair, or I could shut myself indoors in the hope that I would get well again. Essentially I had to sacrifice either my health or my education. Spoiler alert: I let my health take the fall.

My wheelchair was never a prison. It enabled me to finish school, go to university, get a job I hated, get a job I loved, have a social life, and GET FRICKING MARRIED. I go shopping, I go for meals out, I go for drinks, I go to the cinema, and I’ve even been clubbing once or twice as a student (not really my scene). My wheelchair isn’t a prison, it’s my freedom (and now the title of this post makes sense).

I strongly believe that if more people understood this they would stop feeling sorry for me, and therefore they would be able to see that I’m a (relatively) normal person trying to do this “adulting” thing. The notion that “surrendering” to the use of a mobility aid is a bad thing is a terrible notion. Yes, being in a wheelchair has its flaws (see the entire rest of this blog for evidence), but I don’t for one second regret getting into the habit of using it simply because my quality of life has actually improved. I’m not confined to a wheelchair, I’m liberated by it.