Liberty Denied.

When disabled people ask you not to use the phrase “wheelchair-bound”, it’s not political correctness gone mad; it’s political correctness asking you not to contribute to the harmful stereotypes that still plague disabled people’s lives despite proving them wrong time & time again.

The term bound has a lot of implications. It implies that no wheelchair-user, the phrase we would like you to use please, can stand or walk at all. This then contributes to the accusations of faking a disability for benefits, because as we all know that is by far the most effective way of paying the bills. It also contributes to the notion that sudden, inexplicable miracles are a lot more common than you would reasonably believe.

Bound is a word that also implies a lack of freedom, that someone is imprisoned by a wheelchair, which is not true. This in turn causes a lot of physical & mental harm to individuals who become disabled.

When it was recommended that I would need a wheelchair eight years ago, I was adamant that I would only use it for very long trips. I stubbornly refused to use it at after school events & on shopping trips, for fear that I would become disabled. The truth was that I was already disabled. A wheelchair doesn’t disable you; dysfunctional body parts do, & you just might end up using a wheelchair should such a malfunction occur.

My stubbornness left me in horrendous pain & with unbearable fatigue. Then, thanks to Graded Exercise Therapy, my health plummeted & I was left with no choice but to use the wheelchair every time I left the house.

As I expected my life was transformed, but to my surprise it was changed for the better. Suddenly I had my life back. I had an education & friends & as the years passed, I would make my way to university, employment, & marriage. None of it would have been possible without my wheelchair.

There is a stigma that becoming more dependent on mobility aids is “giving in” to disability. This is not true, unless of course you count “giving in” as learning to face an inherently ableist society where your basic human rights are constantly overlooked or denied completely. This stigma makes people believe that mobility aids are a worst-case scenario, that using them is to show weakness, & that their lives will become worse if they use them.

Many of us seem to have that awkward relative who, despite being increasingly aware of their age (to put it politely), refuses to accept help or mobility aids. How many bones have been broken because of this? How many people have been trapped in their own homes because of this? How many people lose their friends because of this? The fact of the matter is that not using a mobility aid is far more likely to imprison & harm someone than using one is.

When writing this I must admit I did have one particular person in mind, although from discussions on social media I know that this is a very common problem. I don’t know if that person will read this, & if they do I may well end up in trouble for suggesting such heinous things, as it is a difficult topic to discuss. By using more inclusive terminology that better reflects the experience of using a wheelchair or other mobility aid, perhaps we can learn to have this difficult discussion, & improve the lives of millions of people across the globe.

Asthmatics Beware: the Eco-Brigade is after us now.

Oh, I’m sorry, I’ll just go die of an asthma attack then.
First you want to stop #disabled people from drinking, now you want us to stop breathing.
“Cleaner” inhalers don’t work. We will die.
Stop trying to find excuses to vilify disabled people & kill us.

2.5% of asthmatics have brittle asthma that doesn’t respond to treatment.
2.5% of asthmatics is hundreds of thousands, if not millions, of people.
1 of those millions is my mother. Another of those millions is my tattoo artist’s little girl.
They have switched treatment countless times. Each time it ends in a trip in an ambulance, even going to resuss. There’s a personal nebuliser at home to use daily, alongside extra steroids.
There is 1 inhaler that works. Can you not kill my mother, please? Can you not kill a little girl, please? Thanks.

https://www.bbc.co.uk/news/health-50215011

Inktober.

According to my CV I’m an educated, experienced woman with an aptitude for the medical sciences & a passion for activism. People have described me as talented, motivated, & determined. Those who know me better would probably say I’m a stubborn workaholic, but that’s beside the point. I have, however, made a choice that clearly negates all my potential attributes; I chose to let someone decorate me with gems & pictures.

I have 4 piercings & 2 tattoos. I have at least 3 more tattoos lined up that will be added to my body over the next few years, & am seriously considering getting another piercing too. Apparently, this makes me ugly, vain, irresponsible, unintelligent, obnoxious, unapproachable, & the spawn of Satan herself. Quite seriously, if people could use a crucifix to banish me, they probably would.

Admittedly these procedures are expensive & have serious risks, both in terms of how they look afterwards & in relation to health, but there are ways to counteract this. I work & save hard, using my own earnt money to pay for the procedures. I often have a design in mind for months, if not years, & if I still like it after all that time chances are I’ll continue to like it going forwards. I also only use experienced, hygienic artists who have excellent credentials, & I strictly follow the after-care procedures. However, the fact that I will take the chance at all stands against me.

In getting tattoos & piercings I am supporting a local, independent business, something which I have struggled to do due to inaccessibility. I have been called horrendous names for using corporate businesses & chains when steps prevent me entering small businesses, but apparently a tattoo parlour doesn’t count. Yet no one has ever been able to give me an adequate answer when I query why.

The truth of the matter is that, frankly, I get tattoos & piercings to benefit myself. I have long had issues with body confidence as a result of relentless school bullying. Prior to getting my right shoulder tattooed I would feel self-conscious every time I wore a vest, & only had one or two in my wardrobe, because I didn’t like the way they looked. Now that I have a tattoo to detract from any flaws, the only time I stop wearing vests is when it is too cold. Everyone deserves to feel comfortable in their own skin, & for me that meant getting decorated like a humanoid Christmas tree.

For me, getting tattoos is about taking back control (not in the Brexit way) of my own body; for too long it has been at the mercy of chronic illnesses & doctors & will always be that way to some extent, but this means I can have some control over my body again. That’s worth more than a few hundred pounds to me.

At the end of the day, people who have tattoos should be stereotyped as patient – it takes hours even for simple jobs. They are also decisive, creative, & can follow instructions. It takes something special for someone to sit still for hours on end while someone stabs them repeatedly with seven needles.

Tattoos & piercings are not for everyone, & no one should ever feel like they have to get one. However, assigning negative traits to someone just because they have tattoos is equally ridiculous & is as daft as discriminating against someone because they use a wheelchair…oh… There are some amazing people on this planet who you might be ignoring purely based on their looks. Don’t judge a book by it’s cover, & don’t judge a human by their skin (FYI, also applies to racism).

If You’re Happy & You Know It.

No one, not even Twilight-era Kristen Stewart, is completely void of emotion. With mental health & well-being never far from the lime-light, we are encouraged to become comfortable with our emotions, or the positive ones at least. There-in lies one of the biggest problems in healthcare right now; we’re so focussed on being positive that we don’t know how to handle anything negative, & some people take this so far as to condemn any & every negative emotion. When something bad happens, we don’t know how to react.

Take, for example, contracting viral meningitis & through a combination of medical failings & sheer bad luck, becoming disabled. Purely hypothetical, of course. No one, not matter how brave or stoic, is going to feel good about their entire world being turned upside-down, & everything they’ve ever known disintegrating like Thanos snapped it away (come on, it’s been well over a year, I think Infinity War spoilers are the least of our worries). Despite this, I was constantly being told to “think positive”, “look at the bigger picture”, or relish in the fact that I no longer took the simple things for granted.

More recently, I’ve been highly critical of accessibility features that prioritise aesthetics over function, & as a result simply don’t work. There have been a couple of ramps merged into staircases, zig-zagging back & forth across the staircase in tight hairpin bends. There were no railings, the corners were tight, it wasn’t wide enough to allow multiple wheelchairs to use it at the same time, it was miles longer than it needed to be, it was a nightmare for those with visual impairments, & no able-bodied pedestrian is going to stop to let someone disabled past. There was also a sign to display in car windows warning emergency responders that someone disabled was in the vehicle. The characteristics it displayed were so generic & vague as to be thoroughly unhelpful, there was no way of linking it to the disabled individual, & it made cars a target for hate crime. Then there was the stair-climbing wheelchair which was so bad I wrote an entire blog post about it.

In each case it was quite clear that no disabled person had been involved in the design process, which when your target audience is disabled people is kind of a bad business model, & I was backed up by hundreds of other disabled people, & many able-bodied too.

On each occasion I was lambasted for being too negative; I was accused of complaining for the sake of it, & not providing constructive advice. I was told I should be more positive if I wanted to make progress. When I pointed out that stopping harm is as progressive as implementing something good, this was disregarded entirely as an excuse. When I caved in & made suggestions on how to improve them (i.e. scrap the entire thing & start again), I was still too negative.

One particularly bad instance came with a long lecture about how she had terminally ill & disabled relatives, & thus she knew that only a positive attitude could get them through the days. As horrible as it sounds, I would bet good money that when her back was turned, those relatives breathed a sigh of negativity relief.

Being positive all the time is not positive. It actually hinders progress, as without criticism you would never improve something that needs improving. It also causes a lot of mental health issues; one of the biggest triggers for my depression when I first fell ill was the idea that I couldn’t find anything positive in my situation. It made me think that my emotional response of “oh sh*t” was completely wrong.

In particular, mental health is one of the few areas where men are worse off than women. Women are encouraged to be in touch with their emotions, but men are told to “man up”. They’re never taught the appropriate way express emotion because they’re just told to suppress it, & they’re also taught not to seek out help when they need it. Women despair when a simple rejection is taken as the biggest insult, & at least part of the reaction some men have to rejection has to be attributed to this.

Quite simply, the “positivity brigade” does more harm than good. They hinder progress, worsen mental health, & stop people developing appropriate ways to express emotion. The reality of the matter is they simply cannot handle criticism & negativity because they themselves have been victims of the same positivity brigade they now endorse.

To Be Or Not To Be (Disabled).

At the time of writing I’m reading the sci-fi dystopia novel Altered Carbon by Richard Morgan. Originally I saw the Netflix adaptation, & enjoyed it so much I couldn’t help picking up the book it was based on. I certainly haven’t been disappointed.

For those unfamiliar with the story, it is set in a future where people can be downloaded onto a USB-drive called a stack, which can be inserted into a new body. This essentially makes people immortal unless the stack is damaged, but unsurprisingly due to the high cost of the procedure, only the higher classes have the privilege of being able to jump from body-to-body multiple times, never having to worry about the Grim Reaper.

While the story is an action-packed thriller involving the “murder” of a rich man who is revived in a clone of his old body, it also raises many unanswerable, philosophical questions about identity, gender, sexuality, crime, & morality. The relationship between the protagonist & one of his associates is somewhat complicated after he inherits the body of her old boyfriend, all the while fighting for his own girlfriend to be revived in a new body too.

One thing that isn’t touched upon in the story, however, is how this system would affect disability. It is understandable that many people would not choose to be revived in a disabled body, but does that mean disabled bodies would simply be tossed aside like trash? If the body you were born in becomes disabled, would you choose to have your stack moved to a functional body?

Quite frankly if I had the option to have myself uploaded into a non-disabled body, I wouldn’t even need to think about it; I would do it in a heartbeat. While using a wheelchair is often complicated & inconvenient, it isn’t this that makes me wish I wasn’t disabled. The sickness itself is the problem for me. There isn’t much I wouldn’t give not to be constantly exhausted, constantly in pain, & often having to fight nausea, dizziness, itching skin & eyes, & the inability to concentrate. Even as I sit writing this my eyelids are sinking & my head feels heavy.

I can’t help but wonder how I would feel if for some reason I couldn’t walk, but was otherwise perfectly healthy. Would I still want to swap bodies? Disability is an integral part of my identity & has given me as much as it has taken, but I still think I’d want to change bodies. If nothing else, fending off the constant questions as to why I hadn’t chosen to change bodies would be reason enough. Besides, given that many businesses manage to make excuses for their inaccessibility now, in a world where disability could be fixed by switching bodies, there wouldn’t be a hope in hell of equality.

Then it boils down to the really tricky question; is it ableist to cast aside disabled bodies like trash? If ableism is defined by prejudice against the disabled, then logically it would seem that this is ableist. Yet I believe that I’m not the only disabled person who would choose to do exactly that, which would make us ableist against ourselves.

At the end of the day this future is highly unlikely to happen, as the number of problems caused by body-switching immortality would probably lead most governments to ban it outright if it ever became a possibility in the first place. It is somewhat useless to debate these questions when they will never arise, especially when we could be putting our time & energy into solving current issues. Still, it is undeniably interesting to think about these questions & how we would choose to answer them

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.