My Precious.

While I can hardly claim to be an expert in psychology, I have picked up one or two interesting concepts throughout my studies & my work in medical research. One concept that particularly resonates with me is the Golem-Pygmalion Effect, & certainly plays a key role in the modern age of mental wellbeing.

Put simply the Golem-Pygmalion Effect is the idea that negative thoughts lead to negative outcomes, & positive thoughts lead to positive outcomes, a notion that will be familiar to anyone who has had Cognitive Behavioural Therapy. The Golem part refers to anthropomorphic creatures made of mud or clay brought to life to aid people, but becoming increasingly corrupt over time according to Jewish folklore. They represent the negative effect. The Pygmalion part refers to an ancient Greek sculptor who allegedly carved a figure so beautiful he fell in love with it, as you do. This represents the positive effect.

Quite often people manage to inflict the Golem-Pygmalion Effect on themselves. Ever wondered how the people auditioning for contests like The X-Factor have managed to convince themselves that they have the voice of an angel, when in fact what comes out of their mouth is more akin to a horse trying to yodel with a sore throat? Pygmalion effect. The person who believes themselves to be completely unable to understand maths, & gives a ridiculous answer to a simple problem just because the numbers panic them? Golem effect.

However, we’re also capable of inflicting the Golem-Pygmalion Effect on others. The teacher that tells a student they have absolutely no chance of passing, however hard they work, often acts surprised when that student fails their exam, but in reality they laid the foundation for failure by discouraging instead of helping a student. The prison warden who believes all of the inmates to be the scum of the Earth without a chance of redemption, will act surprised when the same people return to their care only months after release. While in both cases the failings cannot entirely be blamed on either the teacher or the guard, the Golem effect is undeniable.

Nor does this psychological phenomenon apply to individuals only; whole populations can be affected. A large amount of sexism, racism, homophobia, transphobia, & of course ableism, stems from the Golem effect. For centuries women were told they could do neither the academic nor physical things men do, so unsurprisingly they rarely did, & the same applies to BIPOC (black & indigenous people of colour).

Society believes that disability means that we can’t do things. We can’t go to school. We can’t go to work. We can’t be independent. We can’t do sports (in my case this has nothing to do with the disability; I was rubbish at sports long before becoming sick). These perceptions then mean that inaccessibility is common; why be accessible when disabled people can’t do the things able-bodied people do anyway? It’s no wonder that disabled people have so much difficulty finding suitable employment when employers believe us to be unemployable.

The Department of Work & Pensions is also so overrun with the Golem effect that I wouldn’t be surprised if employees are required to move around the office in an awkward crouch, communicating only in expressions of preciousness. They believe disabled people to be fraudulent as a default, & go to great lengths to find the slightest piece of something barely worthy of the name “evidence” to back up their assumptions.

The Golem effect is a mask for oppression, often sub-conscious but ever-present. I believe it explains a lot of discrimination experienced throughout human history, & may allow us to understand the thought processes behind prejudice.

So, how do we combat the Golem effect? I would say with the Pygmalion effect. Promoting the positive success stories of various minorities, not as inspiration porn, but to obliterate the negative stereotypes that humanity clings to. It is, however, important to remember that the Golem-Pygmalion effect is a balance. Go too far towards the Pygmalion effect & every disabled person will be expected to be a Paralympic gold-medallist with a PhD to boot, a notion which could also do significant damage to the community. Perhaps the ideal solution would be not to have any expectations at all, & to leave it up to the individual as to their strengths & capabilities.

Killing the Red Lion.

Every so often the local news informs us that another traditional English pub has had to close its doors for good, having gone out of business. Invariably the article only briefly mentions those who have just lost their jobs, & instead focuses on blaming the big brand names like Wetherspoons’s & Greene King for the death of English tradition. In the closing paragraph the reader is urged to ditch the Wetherspoon’s in favour of their independent local (the most common name for such a pub being the Red Lion, if you were wondering about the title), and this is something I would willingly do if I could get through the door.

Leeds city centre is home to a multitude of pubs, some of them being from corporate chains, & some of them being independent. All of the corporations are accessible to some degree, although some are better than others. Surprisingly, one of the best for access is an actual boat that someone decided to put on dry land on a hill, & build a kitchen on one side. All of the independent ones have great stone steps in the doorway, & not one of them has a portable ramp (having sent in someone able-bodied to ask, of course). Naturally, any money I spend at a pub therefore goes to one of the chains & not the independent ones. I physically cannot support the traditional English pub.

There are other reasons why the traditional pub is a dying breed. The variety of food that one small kitchen can produce is limited in comparison to the supply chains that provide for chain businesses, so different dietary needs cannot be catered for. Small, independent brands often have less well-trained staff, so the risk of cross-contaminating allergens between ingredients makes it difficult for someone with allergies to know what they can safely eat. Prices can be higher too, as large companies are more able to buy in bulk.

There is also a culture that emanates from some traditional pubs that can make women, people of colour, & members of the LGBTQ+ community feel uncomfortable. It’s not uncommon to hear sexist & homophobic remarks in these environments, & anyone who wants to drink something other than the horribly bitter beer on offer can be ridiculed for it. While this behaviour is becoming rarer, I’m far less likely to experience it in a Wetherspoons.

It sounds obvious, but excluding entire groups of people is bad for business. If you compare the number of white, heterosexual, able-bodied men to everyone else in the world, they become the minority. While I’m not overly fond of corporate culture, if that’s the culture in which I can live a relatively normal life, I’ll accept it.

In 2019, no one can be blamed for the death of the traditional pub but themselves, with their refusal to acknowledge that the world has left tradition behind for good reason.

History Over Humanity.

When challenging inaccessibility there are two words that every disabled person dreads; “listed building”. The government keeps a list of buildings they deem to be historically significant, usually because they have features that are now rare thanks to modern architecture. As soon as you try to touch a listed building, historians start to wax lyrical about how it’s aesthetics should be preserved for future generations. If a meteorite landed on a listed building, they would probably try to sue NASA.

As buildings age & fall into ruin, & as trends change, well-preserved older buildings become treasures. Often they can give us information about the way people lived throughout history, & what sort of conditions they lived in. Many buildings are impressive simply due to size or ornate architecture. They are beloved, iconic in the local area, & thanks to disabled people being institutionalised for much of history, they are often completely inaccessible.

A historian will argue that it is important to preserve historical buildings for the education of future generations. For the most part, I agree. However, most able-bodied historians seem to think that ramps, automated doors, and lifts ruin the aesthetics of the building & take away from the experience. They then use this as a legitimate reason to tell an entire demographic of people that they can’t come into that building, but they’re also not ableist & totally support equality. The notion that a building has better rights than a human being is laughable, yet it has stood in the way of accessibility for decades.

Perhaps the most frustrating thing of this whole debate is that listed buildings can easily be made accessible. The University of Leeds is full of listed buildings, most famously the E.C.Stoner & Roger Stevens buildings, which are hideous concrete memorials of brutalist architecture. Yet every single one of those buildings is accessible. The ramps & lifts do not take away from the aesthetics of the place as they are carefully designed to be hidden, sometimes in plain sight. The Clothworkers building has kept its old wooden double doors on giant hinges, that opens at the touch of a button.

Outside of Leeds there is Bolton Abbey, a centuries old ruin in the middle of the countryside, that is accessible. York Minster has multiple accessible entrances & automatic doors, not one of them being a detriment to it’s appearance. It might be pricey, & it might take a little innovation, but historical buildings can be as accessible as any other.

In all honesty, I strongly believe that “listed building” is often used because it sounds nicer than “that costs a lot”. Perhaps they think they’re softening the blow by telling us that it isn’t capitalism getting in the way of our humanity, it’s history. Perhaps it allows them to have a clean conscience because it’s somebody else blocking accessibility.  Whatever the case, “listed building” is nothing short of an excuse for blatant ableism. What saddens me most of all isn’t even that this ableism is legal, but that there are disabled people out there who not only accept it as an excuse, but actively support the decision to be excluded.

Building Accessible Bridges.

Whenever I have to challenge someone about doing something ableist, such as parking on the pavement or blocking an access route, almost always the culprit tells me it isn’t ableist. Usually this is because they didn’t intend to be ableist, yet it is widely accepted that accidental racism, sexism, or homophobia is still discrimination. Then comes the excuse that they could never be ableist in the first place, because their mother-in-law’s sister’s ex-husband’s cat from 10 years ago once used one of those cute kitty wheelchairs & only had one eye. It is rare that these people apologise, and if we’re being honest, they’re just going to repeat that behaviour over & over again, building up an increased hatred of those self-entitled disabled people who keep challenging them along the way.

During face-to-face interactions it’s impossible for me to hide my anger & frustration that yet another needless obstacle has been placed in my path, both literally & figuratively. However, it’s significantly easier to hide my true emotions behind carefully crafted words, making online interactions somewhat calmer. It is a far more conscious decision to write a sweary insult than it is to blurt one out in the heat of the moment.

With some careful thought, it’s quite easy to pick apart someone’s argument to show them why it’s hypocritical or illogical. Asking someone to specify exactly what they mean by each part of their rapid-fire tweet often brings to light things such as the different interpretations of a particular word or phrase, or where someone has obtained their facts from. With a decent back-and-forth going, & a willingness to have your own statements analysed & questioned in the same way, it is relatively easy to set up a good debate. It is at this point that I realised that marrying a philosophy student may have had an effect on how I win arguments.

That said, some people are never going to listen to you, no matter what evidence & logic you put before them. Here’s the thing – in these scenarios, they feel exactly the same way about you. It can be difficult to remain patient, & I’d be lying if I said I hadn’t given someone the short shrift online for their ignorance, but it is important to remember that they find you as infuriating as you do them.

Humans are argumentative by nature, and even in an ideal world they would almost certainly find something to fight over. However, you’d be surprised how quickly barbed insults can flourish into healthy debate, and another connection is made. Trying to teach others to be tolerant & understanding of disabled people, or any other minority, isn’t about burning bridges. It’s about building them. And now I sound like some wise old wizard who has a white, bushy beard stretching down to their knees.

Bad Medicine.

Back in April the internet was blessed with this little anecdote about a woman who has suffered from migraines since her teenage years. Experience taught her to react to the signs of an oncoming migraine & take her prescribed painkillers before it fully took hold, & providing she did this, she didn’t suffer the symptoms any more. Her boyfriend, having never seen one of these migraines as she always nipped them in the bud, decided that she no longer suffered from migraines. He got it into his head that she had some kind of psychological dependence on her drugs.

One night, when staying over at his place, she felt a migraine coming on. She went for her painkillers but couldn’t find them, so crawled to bed in a vague attempt to sleep it off. It wasn’t until several hours had passed that her boyfriend admitted he’d taken her medication to prove that she no longer had migraines, & only returned it to her after having seen her struggle for several hours. He was, apparently, remorseful.

Words cannot sum up how angry I was after reading this post. I was appalled. Disgusted. Enraged.

Those of us who suffer from invisible chronic illnesses such as migraines, fibromyalgia, or ME, or mental illnesses like depression & anxiety, are constantly being told that we don’t need the medicines prescribed to us by a doctor. In fact, many of us have great difficulty accessing the medication in the first place, so the thought of it being swiped away by some know-it-all with a homeopathic kale enema is beyond terrifying.

Even if it transpired that we didn’t need the medication, removing it completely without warning is straight-up dangerous. Many medicines require a weaning-off period where the dose is gradually reduced. For conditions like asthma & allergies, removal of the medication could easily result in death.

Even those who work in the medical profession themselves seem not to understand the need to nip symptoms in the bud before they escalate. When staying in hospital multiple nurses seemingly objected to the volume of pills I was taking. One temporary prescription I had been given the week before was even removed without my knowledge, let alone consent, & once the pain had escalated beyond control the doctor refused to come to the ward or give me anything to help, claiming without having seen me that I was faking it.

If even inside a hospital, our access to effective medication cannot be depended upon, it is no wonder so many of us guard our medicines so fiercely. They are often kept under lock & key, & it is rare that we let anyone but those who we trust most anywhere near them.

Had Jarred ever tried to wean me off the medication on the pre-tense that I don’t need it, & all I really need is spinach & happy vibes, the relationship would have been destroyed right there & then. Every day I trust him not to meddle with my medication, & after reading this anecdote I realised that I take his reliability for granted.

Unless you are a doctor with knowledge of the patient’s medical history, illness, & prescriptions, you are in no position to make these decisions. Even then you need to listen to the patient, and properly address any concerns they have. No one knows a patient’s illness better than the patient themselves, yet often our needs go ignored.

Think. You wouldn’t take away an ex-smoker’s nicotine patches because you’d never seen them smoke, & you wouldn’t take away a cancer patient’s chemotherapy because it’s essentially a deadly concoction of poisons & therefore you believe it won’t do any good. If you want someone with a chronic illness to trust you, you must prove that you can be trusted.

Stop the Straw Ban.

The plastic Straw Ban is killing disabled people. There is NO viable alternative,
We are denied them in restaurants, & how can we take our own or drink at home if shops ban them too? Dehydration kills!

The Straw Ban table demonstrating why plastic straws are the only viable option.Reality check: plastic straws make up 0.025% of plastic waste. Banning them will not have a significant impact on plastic waste in the ocean.
This is comparable to America rampaging against video games instead of guns. You’re laughing at how stupid that is, right? Then you’re a hypocrite as well as being party to, quite frankly, murder.

The Road to Nowhere.

One of the most important components of a strong business model is to know your target audience; you wouldn’t make much money trying to sell War & Peace to a bunch of 3-year-olds. Surely, then, public transport companies should be going out of their way to provide excellent services for disabled people, given that being a disabled pedestrian is rather difficult. Yet I will avoid public transport at all costs thanks to the difficulties I have experienced when using their services, & I strongly suspect that I’m not the only disabled person to do this.

Taxi companies often have fleets where some of their vehicles have been specifically adapted to accommodate wheelchairs. Despite having spent a substantial amount of money adapting these vehicles, they then go out of their way to make it incredibly difficult for us to use them. Some companies refuse to let wheelchair-users book in advance, stating that they cannot guarantee the availability of an adapted vehicle at any particular time, despite this being the very point of booking in advance. Surely then, this should apply to all of their taxis, but you can book a normal vehicle in advance & they won’t bat an eyelid. This is particularly irritating when you see adapted vehicles being used to transport people who don’t have extra luggage or mobility equipment.

Some taxi services do permit the luxury of booking in advance, but they will always tell you that they cannot guarantee the availability of an adapted taxi at that particular time, which again, is the very point of booking in advance. This is no meaningless disclaimer either; I have waited 90 minutes for a pre-booked taxi to arrive &, if I’m under any obligation to be somewhere at a particular time, I must now leave ridiculously early.

In the miraculous circumstance that a taxi does arrive, drivers will usually have a sulk about having to get the ramp out, & on the drive I am bombarded with invasive questions about why I use a wheelchair.

It’s also a frequent occurrence for people with assistance dogs to be denied access to a taxi, despite this being blatantly illegal. Let’s not even mention Uber or Lyft which, due to the self-employed status of their drivers, have no obligation to provide access whatsoever.

For travelling the local area, I prefer busses. The recent law ensuring that wheelchair users get priority over prams for the space ingeniously named the wheelchair priority spot, has improved things greatly. While some people with prams still take exception to being asked to lift out their tiny child & fold up their tiny pram, insisting that the chronically ill person who is running late should wait outside in the cold, most people are accommodating. The manual ramps, unlike the automatic ones London insists on having, never break down so access is guaranteed. Occasionally a driver might try to close the doors before you board, pretending not to have seen you because they don’t want to have to stand up for 5 seconds to lower the ramp. Other than that, the only problem occurs when more than one wheelchair user wants to use the bus, because how dare more than one disabled person be out & about at any one time.

For longer journeys, coaches are preferable to trains. When assistance is booked (which isn’t even obligatory) it is provided, & not only can the wheelchair be folded up & placed in the hold with the rest of the luggage, but through a series of ramps & lifts a wheelchair can be loaded onto the coach itself. While awkward & longwinded, this far outshines the dreaded trains.

Trains insist you book assistance at least 24 hours in advance; spontaneous travel is not allowed if you are disabled. To receive the booked assistance, you must turn up half an hour early, & even then it’s a lottery as to whether someone shows up. If you are late, even if that is because you’ve missed a connection thanks to the train you were on being delayed, you are denied help. Train guards then go on strike because robots are taking their jobs, but they refuse to do anything at all to help a stranded disabled person. I’ve been left stuck on trains before now, fortunately always having someone with me to get a porter, as purposefully obstructing the doors to make it impossible for the train to leave is apparently a fineable offence, even when it’s because a pre-booked porter decided to take a cigarette break.

Once on the train the disabled toilet is usually out of order, people often leave prams & luggage in the wheelchair spot (and refuse to move it), and the wheelchair spot isn’t big enough to accommodate a wheelchair anyway. In short, the longer, hotter, more awkward coach trip is the easier option.

And God forbid disabled people ever want to go abroad. I don’t have a passport & have never been abroad (!) so I can’t really comment on planes or ferries, but given the frequency with which airports manage to damage or lose wheelchairs, I think this speaks for itself.