Live Long & Prosper.

There is a certain type of Star Trek fan that likes to wax lyrical about how Star Trek Discovery, the latest iteration of the science-fiction saga, is just an excuse for left-wing propaganda. This is because the main protagonist is a black woman, two of the scientists were in a homosexual relationship, & one of the top engineers (who is a woman) mentions her deceased wife. Look closely & you can also spot an extra in a wheelchair. These fans claim that all of these characters are purely to pander to liberals & their political correctness, & that Star Trek should return to its apparently conservative roots. To that I say, bollocks.

Star Trek was one of the first television shows to depict an inter-racial kiss, between Captain Kirk & Uhura, in 1968. As if that wasn’t ground-breaking enough, William Shatner went out of his way to ensure that the kiss made it on screen, by crossing his eyes on the take where Uhura was out of shot & rendering it unusable.

Since then there have been multiple characters of varying ethnicities taking up leading roles in the subsequent series & films, & many strong female characters accompanying them. Deep Space Nine contains excellent examples of these in Benjamin & Jake Sisko, & Major Kira Nerys. It is even arguable that beloved characters such as Spock & Data represent autism. Considering all of this it is perhaps not surprising that I have yet to find a better example of consistently positive representation for disabled characters.

In the pilot episode of Star Trek we meet Captain Pike, before Captain Kirk took the helm of the USS Enterprise. Captain Pike meets a group of telepathic aliens on Talos 4, & over the course of the episode it is revealed that a federation ship crashed on the planet leaving the lone survivor severely injured. The telepaths use their powers to make her look & feel as if she were a healthy woman once more.

Part way through the first series it is revealed that, due to a heroic sacrifice, Captain Pike is left severely disabled. He uses a wheelchair with a built-in life-support system, & can only communicate with “yes” & “no”. At first he will only allow Spock to accompany him, & soon it becomes clear why; Spock manages to ensure that Captain Pike returns to Talos 4, where the telepaths “heal” him.

During the journey there is a tribunal when Spock’s interference is uncovered, & at first the admiral seems reluctant to host the tribunal due to the lack of Federation leaders available. It is pointed out, quite rightly, that Captain Pike is still a captain & the tribunal is allowed to go ahead.

The story-line did not make Captain Pike look weak, nor did it turn him into “inspiration porn”. He had a duty to perform & he did it. The characters learnt to recognise that Captain Pike still existed behind the machinery, & the audience learns this with them. Nor was Captain Pike subject to a mercy-killing, but was able to go and live out the rest of his days peacefully (and in the company of a very attractive woman).

Captain Pike is now a main character on the prequel series Star Trek Discovery, a staggering 50 years after audiences first came to know the character. Without giving anything away, Pike has a vision of his future but continues down that path regardless, as the fate of all sentient life in the universe is at stake, naturally. He fears for his future but tells no one, facing the truth without making a scene, & it is his stoicism that is admirable, not the fact that he will become disabled.

Captain Pike isn’t even the only disabled character in Star Trek. There is Melora in Deep Space Nine, who must use a wheelchair as the gravity on her native planet is nowhere near as strong as Earth’s, & Geordi La Forge who is blind in The Next Generation.

So, if you are one of those toxic fans who thinks that left-wing politics doesn’t belong in Star Trek (although for the life of me I cannot fathom why you would be reading this blog in the first place), you couldn’t be more wrong, because I am completely unable to find such a consistently excellent representation of disability in pop-culture at all. Let it live long & prosper.

Inspired.

Being referred to as an inspiration should be a compliment. It means your influence has impacted others, caused them to change their behaviours, or take action on a particular problem. It means you are respectable, even exceptional. Unfortunately, as any disabled person will tell you, this isn’t always the case. Being called an inspiration can be flattering, uplifting, and empowering, but it can also be embarrassing, patronising, and downright ableist.

Recently I went for drinks after work with several colleagues, my boss, his boss, and the boss of my boss’s boss. It was a fairly small and quiet affair, with the alcohol flowing perhaps a little too freely, and all pretence of professionalism left behind at the office. As the evening progressed I ended up in conversation with Supreme Leader Debs (the boss of my boss’s boss). We had discussed a few elements of work as I was still fairly new to the team, but conversation naturally drifted towards our activities outside of work. I mentioned the whole writing thing very casually, as well as my activities in support of equality and inclusion both in and out of the workplace, and also that I was soon to be married. After listening to me talk about my very full life, all of which happened outside of a full-time job while living with a debilitating chronic illness, she told me I was an inspiration. Was I uncomfortable in any way with this? Quite frankly, no. I was actually pretty excited.

Just a few days after that I paid a quick visit to the corner shop to pick up a few essentials, nothing major, and nothing as exciting as the glamourous lifestyle I like to project on Instagram (hey, we’re all guilty of that, right?). An older man at the self-service checkout next to me tapped my arm and told me I was a true inspiration, very loudly and very much in earshot of everyone else in the shop. I stammered an awkward thank you, knowing he meant well and not to offend, and tried to hide my beetroot-red face from the rest of the shoppers. I was extremely uncomfortable, and would have made a quick exit had it not been for the fact that I hadn’t yet paid for my groceries and would have been arrested for shop-lifting.

Two very similar things had been said to me, and yet they evoked two entirely different emotional responses. Why?

There are several factors to consider here. First of all, Debs was not a stranger; she knew me and my capabilities, and could make a much better judgement of my lifestyle because of that. Secondly, this was said in one-to-one conversation in a noisy pub, not projected loudly across an entire shop. The fact that a little alcohol was involved in the first instance may well have reduced social inhibitions on both our parts, making it even less likely to be embarrassing for either party. Perhaps most importantly of all was the topic of discussion at the time; I wasn’t just doing something as mundane as getting groceries, but was talking about essentially having two jobs and quite the double life, managing to perform well in both, all while I was ill. Put blatantly and a little arrogantly, this is no small feat.

It can be hard not to feel patronised or even a little exploited when a random stranger declares you worthy of knighthood for existing, loudly saying as much in public. I know that no offence was meant and that’s why I try to be patient, just smiling and nodding before carrying on with whatever I’m doing. At the same time it’s almost impossible not to be annoyed at people’s ignorance and lack of empathy; it’s not like this is the first time this topic has been touched upon. Nor, I’m sure, will it be the last.

Pro-Disabled.

Recently it seems that civil rights are regressing, evidenced by the introduction of overly strict abortion laws in Alabama with multiple other states looking to follow suit. Given my left-wing stance on most political issues it should come as no surprise that I am strongly pro-choice, however, there are a couple of arguments I regularly hear from the pro-choice group that I take issue with.

Many pro-choice people correctly point out that most abortions take place early in the pregnancy, when the child is an embryo, not a foetus. The implication here is that an embryo has a questionable status as a life form, a sentiment I take issue with as I am the sister to 7 miscarried siblings, & I have seen the devastation a miscarriage causes time & time again. Unless the people brandishing this harsh argument wish to tell everyone who has ever miscarried not to mourn, I personally feel that they should have more tact when discussing the matter.

The second argument I hear from pro-choice activists is to use disability as a justification for abortion. There are some in utero tests that can predict with relative accuracy if the child has some kind of disability, whether that be a congenital malformation or even a genetic defect. When the results of these tests are positive, some women choose to have an abortion, a choice which is theirs to make. With such poor welfare many women could simply not afford to bring up a disabled child, & other disabilities are so severe that it can be argued that the child would know nothing but pain & misery in their often shortened lives.

Unfortunately, there are some people who have used to this argument to tell disabled people, to their faces no less, that their mother should have aborted them. Of course, telling the mother she should have had an abortion is as anti-choice as telling her she shouldn’t have had one, a hypocrisy I find particularly distasteful. This argument is also completely useless when you consider that not everyone is born disabled, including yours truly. There was no way my current condition could have been predicted during pregnancy, & suggesting that when someone becomes disabled they should be put down like a horse with a broken leg is nothing short of genocide.

My biggest problem with disability being used in this manner is the implication that disabled people cannot live happy lives & only know how to suffer. I know a great many disabled people with a wide range of conditions & abilities, & I doubt many of them would consider themselves better off dead. While the life of a disabled person certainly contains its hardships & difficulties, we also know the joy of life too. It’s possible we know that joy better than someone who isn’t disabled at all. We have lives. Partners. Children. Pets. Jobs. Social lives. Hobbies. Aspirations. We go on adventures & defy the odds that are stacked against us. We fly in the face of expectation.

Bringing up a disabled child is a huge undertaking, & not everyone is in a position to be able to do that. In many cases an abortion is the right thing for both mother & child. However, disability itself being used as a justification for abortion undermines our existence and only adds to the stereotype that we are weak & helpless beings who deserve pity. Given that many become disabled later in life, it’s not like abortion would eradicate the issue anyway.

You may be wondering at this point why I’m pro-choice. It’s worth noting that while we can try to imagine how we would react in particular situations, it’s impossible to predict it accurately unless you have experienced that situation yourself, & so you’re hardly able to make a judgement.

However, the true reason I am pro-choice has nothing to do with morals or ethics. Instead, it has everything to do with reality. It doesn’t matter whether abortion is legal or not; people are going to try & abort pregnancies, & did so when abortion was illegal in this country. Allowing access to safe abortions saves lives. It also reduces the risk of irreparable damage preventing future pregnancies. If people were truly pro-life, they would value the life of the mother as much as that of the child.

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.