Womb of Woes: Part 2.

My second appointment was with a different, younger doctor. Once again I reeled off a list of my symptoms, fully expecting them to be ignored. Therefore, it was something of a surprise when he actually listened to me. When I explained that the inability to have sex, which can be attributed to an entirely separate condition called bilateral dyspareunia, was not what I considered to be a problem, he listened. The focus was shifted onto my other symptoms, & a discussion about diagnosis & treatment was quickly underway, which came to a drastic conclusion. For three months they would use hormones to medically induce the menopause at age 22. If my symptoms stopped, they would undertake a diagnostic laparoscopy, quite literally sticking a camera into my guts to identify the problem.

It took a few weeks to start the treatment as my ordinary doctors were adamant that I was making a fuss over nothing & didn’t need anything quite so invasive (read: expensive). However, I basically annoyed them into submission, & the following three months were the best I had felt since my periods began. The symptoms were eliminated overnight. It was bliss. Even with frequent hot flushes, I was far happier.

All good things must come to an end, & those three heavenly months were soon up. I returned the hospital & saw yet another doctor, this time the head of the department. He was openly disbelieving that anything was wrong, despite the hormones showing such drastic improvements, & tried to dissuade me from undergoing surgery. However, after almost 11 years of fighting to be heard I refused to back down, & my surgery was set to take place at the end of September.

As the surgery approached I became increasingly nervous. You’d have thought that my nerves stemmed from the fear that it would go wrong, or concern for what they would find, but I was actually most afraid of them finding nothing. The leaflets given me all stated, in nicer terms, that if they didn’t find anything via surgery that there was nothing wrong with me, & that I would be discharged. I knew that there was something wrong with me, & had suspected for years that it was endometriosis, but now a definitive answer approached I began to doubt what I knew.

Eventually the day of the surgery arrived. As I was in the ward preparing for the operation, the anaesthetist came to speak to me. With the very briefest of greetings out of the way he immediately asked why I used a wheelchair. I answered, & was immediately asked how I was diagnosed with M.E. I failed to see how this related to the procedure but answered anyway. I was then asked if I did any exercise, & when I answered in the negative I was grilled as to why. He refused to accept that exercising more wouldn’t cure me, & looked down his nose at me in disdain. He added that as a chronic pain patient I could expect to experience more pain than normal upon waking up, but that they would treat that as they saw fit. Clearly, I was just another hypochondriac making a fuss about nothing. Fortunately the head surgeon, who visited me a few minutes later, was much kinder & more sympathetic.

It was approaching 2 pm when I was asked to walk to the operating theatre. They were surprised when I couldn’t just manage the “tiny” stretch of corridor which was at least 150 metres, without any walking aids. However, one of the nurses took the initiative & pushed me there in my wheelchair, saving me from further embarrassment.

The pre-op room was chilly, & as I stood in the thin gown in front of five men & a woman, I suddenly felt very vulnerable. I lay down & was given oxygen via a mask clamped far too tightly onto my face, making it difficult to breath, & a trainee doctor put the cannula in my left hand. He was so nervous about hurting me that he didn’t push the needle in deep enough & it fell back out, so then they had to try again on my right hand. He was mortified but I assured him it was fine; no practice model will ever be able to replace the real thing. As the ceiling tiles started to spin & merge above me, the nurse squeezed my hand.

Let Me In.

Nothing makes me feel quite as degraded as waiting outside to be let in like a dog. Cats get better treatment than disabled people in this regard, given that wheelchair-flaps aren’t really a thing. If separate entrances for different genders & ethnicities is considered archaic & discriminatory, why does this not apply to disabled people?

I would love to know just how long I have spent outside, often in the cold & wet, waiting while whoever I’m with goes inside to attract the attention of a member of staff, to be directed to the right member of staff, who will then leisurely collect the keys & meander over to the accessible door to let me in. There is never a sense of urgency; other customers who had the luxury of being able to enter the premises of their own accord taking priority, & when the door is finally opened to let me in, I am expected to be beyond grateful for their unwarranted kindness. I’ve even heard members of staff complaining about having to let someone in because it’s such an inconvenience for them. Given the hardship it brings them you’d think someone would have tried to come up with a solution such as making the accessible door the main door, or making the main door accessible. Alas, it is always me to blame for wanting to leave the house every once in a while.

On a few occasions I have challenged the system of making a wheelchair user wait to be let in. Every single time it comes as quite a surprise to the staff that the system is anything less than perfect. To be fair the staff usually report the issue to management, but invariably I get an excuse about budgets, the building being listed, or even something to do with my personal safety. Yes, apparently waiting outside in a dark, dingy alley in the cold, on my own, was for my own safety.  Had I not already been, I would have had to sit down in surprise.

By far the most infuriating defences though, are the most the insulting. I am often informed that it actually isn’t ableist to make the disabled person wait outside while everyone who isn’t disabled can go about their business unimpeded, & clearly I, as a disabled person, don’t understand the meaning of ableism.

Similarly, “Well, at least we’re accessible (¯\_(ツ)_/¯)” is commonly encountered. Much like myself, this excuse doesn’t stand up when scrutinised. Chances are, for those living near cities at least, there is a more accessible competitor nearby, & the companies who elect the policy of “disabled people = dogs” are losing out to their competitors.

A system that denies someone the right to their independence purely because they have a protected characteristic, such as disability, is discrimination. A system that forces people to wait outside to be let in when everyone else can go in & out freely, is discrimination. Yet this system is often regarded as a reasonable adjustment, an accessibility feature, & the proprietors have never had any complaints. The only reason they haven’t had any complaints, of course, is because we got bored of waiting & went to someone who will treat us as the human beings we are.

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.

Weekend on Wheels: Brand New Show!

Due to some technical issues, I am replacing my Saturday Streamer livestreams with the pre-recorded show Weekend on Wheels.

It will be uploaded once every 2 weeks on a Saturday on my #youtube channel, & the content will be roughly the same. I may even get round to editing them into more professional-looking shows!

I do plan on sporadically releasing other videos in between, so make sure to like, subscribe, & hit that notification bell so you never miss a thing!

Just go to YouTube & search Diary of a Disabled Person, or if you’re on a PC, click the YouTube logo in the column on the right of your screen.

Diary of a Disabled Person presents Weekend on Wheels. A brand new show every other Saturday, only on YouTube!

YouTube Channel.

Some of you might have noticed that some videos have disappeared from my blog; I’m currently in the process of moving them across to my blog, where you can now view them on my new YouTube channel. This should mean my website runs faster & smoother, improving your experience!

Make sure you like & subscribe on YouTube for those videos & for future content!

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