Equal Pay For Disability.

Bold, white capital letters reading Equal Pay For Disability on a purple square. A black & white I.age of several empty wheelchairs surrounds the box in the background.

A Tory candidate has stated that disabled people should be paid less than our able-bodied counterparts, because our work is about happiness.
Because we don’t have bills to pay.
Because someone else will look after us.
Because we don’t pay more for transport, accessible accommodation, equipment, or medication.
Because able-bodied employers are giving us opportunities we should be grateful to receive.
My work saves lives.
It could save the NHS that they destroyed.
It takes skill, hard work, & dedication.
But because I use a wheelchair I should be paid less for it.
This story has already fallen off of the news websites. It’s already being covered up & forgotten. We cannot let that happen so close to a general election.
So if you support disability rights, even if you’re not in the UK, tell people about this. Tell them the truth.
That a vote for the Tories is a vote for blatant illegal ableism.
https://www.bbc.com/news/election-2019-50684582

I Am Not a Drug Addict.

Despite the world’s insistence on kale enemas being the cure-all for everything from colds to cancer, some illnesses require carefully manufactured pharmaceuticals for a cure, & even then sometimes there is no cure & we can only treat the symptoms. There is a plethora of such illnesses, & as of writing I live with at least 3 of them; asthma, depression, & chronic fatigue syndrome/myalgic encephalomyelitis. Depending on the outcome of my impending surgery, I could be adding another to the list – endometriosis (note: I now live with 4, because having just 3 was boring).

All of these illnesses are chronic. For the most part their causes are unknown, making it impossible to cure them. Instead, all we can do is treat the symptoms for as long as they persist, & the word chronic should give you an indication that the symptoms last longer than a couple of weeks. Yet, as fellow sufferers of such conditions will all tell you, we are constantly being reminded by our doctors that the pain killers & symptom managers we rely upon to function are only meant to be used for 6 months, or at most a year.

You don’t need to be a doctor to know that chronic illnesses don’t have the good manners to abruptly stop without warning after 6 months of using a prescribed medicine. However, at this point we start to be pressured by medical professionals to stop using medicines, without alternatives being offered. We are faced with a choice; subject ourselves to debilitating symptoms, or insist on keeping our prescription & be labelled as dependent on drugs. As far as most doctors are concerned, this is no different to being a drug addict, living from one high to the next, consumed by the need to remain intoxicated. Very few of them seem to fathom that our dependency stems from the desire not to be in excruciating pain.

My prescriptions keep me alive; they mean I can breathe. On top of that, they dull the pain enough to allow me to move. They meant I got an education, a full-time job, a husband. They mean I can write blog posts & make videos, join protests & watch wrestling, socialise & play games. Even with them I remain in constant pain.

Back in early 2019, shortly before we were scheduled to leave the EU for the first time, my main prescription disappeared. No one would supply it. I argued with the doctors & pharmacy daily, watching the number of pills left dwindle day by day for an entire month. Eventually, just before I ran out, the supply returned, but for an entire month I had lived in constant fear. If they ran out, how would I work? If I couldn’t work, how would I pay the rent? If I couldn’t pay the rent, where would we live? Even scarier than the financial aspect was the knowledge that I would be in unbearable pain.

In the current unstable political climate of the UK, & who knows what madness will have taken place by the time this post is published, that fear has returned as the supply of my medicine falls into question. It made me realise just how dependent on these prescriptions I had become.

Dependent though I may be, addict I am not. Addiction is an entirely separate physiological & psychological dependency on drugs, often obtained illegally or for recreation in the first place, which still needs to be treated with far more compassion & understanding than it is given now. The stigmas & stereotypes that haunt addiction also haunt me, & that is what I despise. Chronic illnesses & drug addictions are two separate conditions, in need of different treatment options. To lump us all into one category & regard us all as lazy strays draining “the system” of money damages us all.

When all of this is said & done, there is one fact left to face. If we’re being honest, the pressure to get chronic illness patients to stop using prescriptions is to save money for the NHS, not for our own good as they like to tell us. What good is not being addicted to drugs if we’re in unrelenting misery instead, which ironically is something that drives people to use illicit drugs. While the NHS certainly does need more funding, jeopardising the health of patients goes against everything it was set up to do.

So, when you see scare-mongering on the news about people becoming dependent on prescriptions, just remember that there is an entire side of the debate supressed into silence. We are not drug addicts. We are just sick.

She Sells Sanctuary.

Opposition can come from the unlikeliest of places, as I discovered online rather recently. Seemingly out of nowhere someone was telling me at length about how medical research is ableist. They weren’t referring to the general ableism experienced in every industry, but genuinely believed that medical researchers were striving to eradicate disability completely within the next few years. Given that my studies directly related to medical research, & that, well…I work in medical research, this was news to me. However, despite their mostly irrelevant if impressive education & career, they persisted in explaining to me why I, a disability activist, was contributing to ableism.

Needless to say, I was a tad miffed (read: bloody furious).

There were also several fundamental flaws in their argument, & if being married to a philosophy graduate has taught me anything, it’s how to pick apart someone’s argument & use it against them (domestic disputes in our house are fun).

First & foremost, the depiction of medical research on the television makes it seem like cracking the human genome is the key to all medical matters, & therefore once we crack that code, we can click our fingers & snap everyone back into good health. That theory was put to bed over a decade ago, when the infamous human genome project came to a close, & a new field of study opened up; epigenetics.

If your school biology classes were anything like mine, & you were actually paying attention, you were probably taught that there were two categories of things that could influence your biology. These were genetics, & environmental factors.

What if I told you that there is a third influence, which arises when genetics & the environment collide (sometimes quite literally)? Molecules that enter our bodies interact with genes, making them more or less pronounced, activating & deactivating them, & sometimes resulting in a mutation. Suddenly that little dietary balance diagram doesn’t seem so hard.

The truth is, even if medical research could decode the human genome in it’s entirety, it wouldn’t actually solve much. It’s simply not within our grasp, now or any time soon, to eradicate disability. Therefore, this notion that medical research could wipe out an entire demographic is purely fictitious.

But, is medical research trying to do that anyway?

In short, no. We’re too busy dicking around in the office for that.

There is also a troubling implication of the theory that medical research aims to get rid of disability; what about disabled people who want things to improve? Is it ableist of me to not want to be in constant pain? To want to have literally one organ system in my entire body that does its job without periodically trying to kill me? It’s very easy to say that we don’t need to find a cure for disability when the condition you have doesn’t leave you feeling constantly unwell, or at an unsurpassable disadvantage. It’s entirely a different matter when people are living & dying in misery because of it.

Finally, when all is said & done, there is one thing that remains to be said.

In order to find a cure, a disability must first exist. Therefore, medical research is dependent on the existence of illness & disability to stay in business in the first place, you illogical buffoons.

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.