Defining Disability.

Lots of interesting things were discussed at a conference I recently attended, but nothing quite captured my attention as much as the discussion on how disability is defined. The dictionary definition of the word is “a physical or mental condition that limits a person’s movements, senses, or activities”, but this definition has multiple fallacies. Most problematic for me is the use of the word limit, suggesting that our contributions to society are weaker & lesser. It also promotes inaccessibility by making assumptions about our conditions & how that affects our needs.

Furthermore, in my personal experience of disability I am mobile; I can stand or walk. My difficulties arise because I can’t do them for even a short time, nor can I do them frequently, & so I must use a wheelchair to be able to get around. Is time or distance considered a limit under this definition of disability?

Then we have the medical definition of disability. This model of disability defines an illness or disability as the result of a physical condition, which is intrinsic to the individual & which may reduce the individual’s quality of life and cause clear disadvantages to the individual.

This is somewhat more inclusive towards people with chronic illnesses like myself, except that many of these illnesses are still lacking a biochemical or physiological explanation, so could be denied the status of intrinsic physical condition. It also fails to encapsulate environmental factors such as being involved in a traffic accident. While perhaps the physical damage is intrinsic, a large metal box on wheels causing said damage is distinctly extrinsic. In addition and somewhat similar to the dictionary definition, there is also an emphasis on disadvantages & limitations. Once again, we are weak & pitiful creatures with nothing to offer, & nothing can be done to help us.

Finally, we have the social definition of disability, as developed by the World Health Organisation in 2001. They state disability to be an umbrella term for impairments (problematic body function or structure), activity limitations, & participant restrictions. Quite how the last two points differ I’m still unclear upon, but what does come across in some of the examples used to explain them is that these limitations are not always intrinsic. For every aspect of disability like pain or fatigue is another aspect beyond our control, imposed upon us by an inaccessible society.

If you are a wheelchair user, a step is a barrier. There are ways of overcoming said barrier, namely a ramp. For a flight of steps a lift is often more appropriate, & as simply as that, the barrier is removed.

If you have a visual impairment, reading written words can be a barrier. A screen reader or braille can overcome that barrier.

If you have a hearing impairment, sign language or subtitles can overcome that barrier.

What comes to light through this social model, although it is by no means perfect, is that society is as disabling as the conditions that ail us. With the proper inclusion of accessibility features, many barriers can be reduced or removed altogether. At the end of the day disability will always be a disadvantage, but does it really have to be as big of a disadvantage as it is right now?

Big Brother.

The Department of Work & Pensions are best described as a necessary evil, & that’s being generous. You’d think that an organisation that is supposed to support people in finding employment & aiding us in retirement would be well-loved, but the fact of the matter is that much like the NHS, the idea has outshone the execution.

Lots of people have cause to dislike the DWP, but the hostilities are perhaps felt most strongly among disabled people. Simply put, the majority of us live in fear of them.

At the time of writing I’m on the higher mobility rate of Personal Independence Payment & get nothing for the care rate. My powered wheelchair, without which I couldn’t go to work, is paid for on a scheme that takes the money from my monthly allowance before I have received it, and the little that’s left over goes towards (but by no means pays for) medication, other mobility aids, & transport. When this contract comes to an end, I plan not to renew it, but to buy my own wheelchair independently. Why? Because all it would take is someone from the DWP to put my benefit up for early review & the rate be dropped, & I would lose my wheelchair instantaneously.

This may seem paranoid but multiple acquaintances of mine have already experienced this, & the cases reported in the news demonstrate that this is not as rare as you would think.

CCTV footage from public places, particularly supermarkets, has been used as evidence in court to show that someone is not disabled on multiple occasions. On the surface this might seem sensible, or at the very least, not objection-worthy. However, despite clearly stating on my application form that I am capable of standing up & walking short distances with support, & that my condition varies greatly day-to-day, I still find myself looking for all the CCTV cameras in a store when I’m on my walking frame. I worry that I don’t look disabled enough, particularly on days when I feel well. Quite frankly it is like living under the judgemental gaze of George Orwell’s Big Brother.

At this point people like to argue that if you’ve done nothing wrong, you have nothing to fear. I wish this was true but I fear wrongly convicted criminals might feel a little differently. The fact of the matter is that while in a court of law you are innocent until proven guilty, the reverse seems to be true for disabled people.

For example, I have to watch what I post online, which for someone with a blog about disability is rather contradictory. I like to take photos of my outfits for Instagram, but I’ve taken to sitting down for most of these out of fear that someone could take a snapshot quickly taken before sitting back down, & use it to claim I’m lying. Every picture & comment becomes a calculated risk, & even this blog post is no exception.

Even being called back for your review assessment after the assigned period of time since the last one is dehumanising. Assessment centres are often inaccessible, but your application will be denied automatically if you fail to attend.

Even if you do make it into your assessment, the assessor is not the one who makes the decision about your benefit; this decision is made by someone who has never met you. They take the assessors report, look at any other evidence you have managed to supply (the majority of which they will tell you is ineligible due to arbitrary reasons), & having never seen how you have to live will make a decision that controls how you live for the next few years. Appealing poor decisions takes months, is highly stressful, & everything you say & do is subject to scrutiny for the duration of the procedure. Anyone who does choose to appeal is made to feel like a criminal.

Disabled people are not criminals. Being disabled is not a crime. Yet it is demanded of us that we repeatedly prove our innocence. Under any other circumstances this would be deemed diabolical, yet it is how many of us, myself included, must live.

The D-Word.

With each generation language evolves, & one of the driving factors behind this change is the words we use to describe each other. While the n-word was once a common term for people of colour, most white people today will never let the word pass their lips. When I was at school, we were taught not to use the term faggot due to it’s homophobic connotations. Finally, it seems that the focus has shifted onto how we talk about disability.

Disabled people frequently refer to themselves as disabled. I mean, you are currently reading Diary of a Disabled Person (for which I thank you). We are comfortable with the word disabled as it hasn’t been used as an insult very often, & it neatly describes the vast range of conditions & characteristics that can render someone disabled. However, most “ableds” seem to disagree. They think that referring to ourselves as disabled is demeaning and belittles us, when in actuality, denying us the right to determine how we are described for ourselves is far more belittling.

So, if we’re not supposed to call ourselves disabled, what do we say? Differently abled is a common suggestion, although my personal favourite is access inclusion seekers. Both of them are long-winded & can hardly be said to roll off the tongue, & the former implies that no matter what resources are made available to me, I simply cannot function on their level. The latter is just an excuse to be inaccessible given that, if everywhere were accessible & inclusive, we would have nothing to seek.

It should also be noted that I’ve already purchased the domain name Diary of a Disabled Person, and I had the word disability permanently etched onto my skin (along with some other words).

More specifically to those of us who have wheels, it is still common to hear wheelchair-bound being used to describe us. Bound has lots of problematic connotations, such as being limited by our wheelchairs, or perpetuating the stereotype that all of us are paralysed from the waist down & cannot walk or stand at all. The term wheelchair-user is significantly preferred by those of us who use them, but we are shouted down as we couldn’t possibly know for ourselves what we want.

If the reluctance to use the word disabled wasn’t bad enough, there are words still in use that generations of disabled people have said are unacceptable. Retard. Spaz. Cripple. More recently, idiot, a term that I still find slips out far more often than I’d like. These are the words with offensive connotations that we want people to stop using, yet this is ignored and the term we want is denied to us. Is there anything more patronising than out desires being over-ridden in favour of someone who knows nothing about our realities?

If people want to support the disabled, they need to start by listening to us. They need to start respecting our wants and needs. They need to stop condemning things which shouldn’t be condemned, & start shouting down those who park on pavements & block access routes, those who treat us as if we were a particularly unintelligent toddler, or those who make us invisible. They need to start with the man in the mirror (sorry, couldn’t resist).

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.