Take the Shot.

If there had been a vaccination for the strain of meningitis I contracted in 2011, chances are I would never have developed chronic fatigue syndrome. Luckily for you, I fell ill and then decided to whinge about it, calling it entertainment.

Vaccinations are a contentious topic in the court of public opinion all thanks to a scientist who wanted some extra pocket money. The scientific community are very familiar with publication bias; papers that show no correlation or have a null hypothesis are far less likely to be published. After all, medical journals are still a commercial enterprise and need to make money, and no one wants to buy a book where nothing happens. So the scientist forged some data to give the false conclusion that the MMR vaccine resulted in autism, and the world reacted with its usual level-headed reasoning abilities. Even if this were the case, measles, mumps, or rubella have deadly consequences, whereas autism is at least manageable with the right support despite its difficulty.

However, there is a debate surrounding vaccinations that is much closer to home for me, and that is the association between CFS and vaccinations. Vaccinations make people who already have CFS feel horrendous, which I can confirm from personal experience. I get a flu jab every year, and for the next 48 hours or so I will feel like Jupiter’s gravity is emanating from my chest and I also have an elephant sat on me. However, developing the actual flu would be significantly worse, leaving me incapacitated for several weeks at best, or at worst, dead. Therefore I consider the flu jab worth it.

The real question is whether CFS can be triggered following a vaccination. Having scoured the internet the vast majority of scientific evidence that I can access suggests that there is no correlation between the two, and given that CFS is often triggered by a severe viral infection, vaccinations may even offer some protection against CFS. However, there are also abundant case reports of people developing CFS out of the blue, and it has been noted that in these cases, a vaccination has usually been given a short time before.

Given that we know so little about CFS, it’s causes, and it’s biochemistry, there is no definitive way for researchers to establish a connection between vaccinations and CFS. For all we know there could be undiscovered associations with air pollution, food poisoning, or physical injuries. Vaccinations are constantly in the media and the forefront of our minds, making them the first conclusion that is all too easy to jump to. I remain extremely sceptical, however, as having studied the biochemistry of vaccinations as part of my degree, I simply cannot align inoculations and diseases like CFS.

It is also worth mentioning at this point that CFS, while a brutal disease that can even prove fatal, places far less immediate danger on the patient than meningitis, measles, mumps, rubella, poliomyelitis, and even influenza. Sometimes in life we have to balance the risks, and take the lesser of two evils. Take the shot.

What Came Before.

Given that the title of this blog is Diary of a Disabled Person you could be easily forgiven for thinking that discussing my life prior to disability is somewhat irrelevant. However having had many conversations with able-bodied people who accidentally discriminated against the disabled and pleaded ignorance, I have been able to reflect on my own actions before disability was a factor in my life.

The saying that “you never imagine that something like this could happen to you before it does happen” is clichéd, but it is also true. Before a virus decided my brain tissue looked like a tasty meal, disability was something other people had to deal with. Of course had you asked me, I would have thought myself to be highly inclusive and non-discriminatory, a result of my ignorance. I realise that in my time at school I have probably obstructed a corridor, left someone disabled to struggle with a door, and stepped across the front of a wheelchair without a second thought. I probably spoke to someone in a patronising tone or ignored them altogether in favour of speaking to whoever they were with. I certainly never stopped to consider that I could enter buildings that wheelchair users couldn’t, by virtue of the fact that I could climb up steps. Had I been old enough to drive chances are I would have parked over a lowered kerb. My parents brought me up not to misuse disabled facilities like toilets and changing rooms, but other than that, I probably caused many disabled people a headache or two.

All of these little annoyances that now occur in my daily life I have probably put someone else through and while I hate to make excuses, I would say that most were a result of ignorance. No one in the family was disabled at the time, none of my friends were disabled, and I wasn’t disabled; I had no experience to learn from. This is why I try to have a little patience with others when they simply didn’t know or realise that what they were doing would cause me extra trouble, particularly if they are genuinely apologetic and help me resolve the issue when it is brought to their attention. I will
sometimes try to reassure them that I used to do similar things out of ignorance myself.

There are however, a group of “ignorant” people that I find difficult to deal with. There are those who take exception to me having a problem with blocked access routes, and neither apologise nor help me resolve the issue, often giving me a mouthful of abuse for daring to burst their precious little bubble in the process. Many car drivers will move forwards to clear a kerb drop only to roll back over it once I have passed, leaving it blocked for any other wheelchair users. Others tell me they’ll only be there a minute and to be patient, despite the fact that this attitude can make me late to wherever I am headed.
Then, there are the worst of them all; the people who park in disabled bays, and use their changing rooms and toilets who don’t need to, usually because they want to take their pram/trolley/shopping bags into a larger room with them, and not when all the other facilities were already in use. These people are invariably the rudest and most inconsiderate, and certainly cannot plead ignorance when there are signs everywhere highlighting that disabled people should have priority access to those facilities. I knew better than that as a child, and I know I would never have been that inconsiderate
as an able-bodied adult.
I believe genuine ignorance to be a forgivable reason for accidental ableism. However when people choose to carry on impeding the disabled by continuing to do things they know are ableist, neither apologising nor helping me to rectify the issue or simply disobeying the signs displayed clearly around the facility, I cannot accept ignorance as an excuse. It is these people who are truly ableist and shouldn’t get to hide behind half-hearted excuses to avoid responsibility.

Pain Pain, Go Away.

Unless you have been sleeping under a rock because house prices are soaring you will probably be aware of the recent opioid crisis in America where shocking statistics showed the true extent of opioid use in the USA, and the detrimental effect this was having on some people’s health. The backlash lead to doctors restricting patient’s access to opioids, particularly for long-term users. Almost immediately a huge debate sprung up between two communities; those who were concerned about the issues caused by long-term opioid use, and those with chronic pain who were now struggling to access painkillers, making day-to-day life significantly harder.

For pain relief I rely on medication traditionally prescribed as anti-depressants with two such tablets working together to boost the effects each other. On the worst days I have to rely on paracetamol and aspirin, despite aspirin aggravating the symptoms of my asthma, to control my pain levels. I was initially prescribed codeine for these occasions but as it transpires I am intolerant to codeine. This means that some days I just have to accept that the pain isn’t going to subside, which is a truly unpleasant realisation, but fortunately is not too regular an occurrence to cause me any great concern.

The one and only occasion on which I have used morphine, the mother of all opioids, was when I had a gall stone wedged in duct between the pancreas and small intestine blocking the passage so that no matter how hard my muscles contracted nothing was passing through. If this sounds like it might be painful I can assure you it was agony, especially having only had surgery the week before leaving the scar tissue fresh and tender, and it took a hefty dose of intravenous morphine to get the pain back under control. What I realised after taking the morphine was just how effective it was; my chronic pain which had been lurking in the background for several years was gone. Completely.

Suddenly I came to realise just how much of a relief it was for the pain to totally stop, even for a short time (everything they say about sudden realisations while high is true). Paracetamol might have dulled the incessant aching to a background inconvenience but the pain was still there. With the morphine, my head didn’t throb for the first time in years. My muscles weren’t permanently telling me they wanted to rest even as I was resting. It was quite the come-down.

If it is frustrating for me not to have access to the most effective painkillers for my condition out there, what it must be like for those who haven’t even got access to the less effective alternatives that I use is unthinkable. The chronic pain community are struggling to get access to any pain relief at all on a long-term basis, meaning they’re left to cope with horrendous conditions without any help. The side-effects and risks associated with long-term opioid use are well known and understood by the chronic pain community but given that they already have to live with chronic pain, the risk of side-effects in the future is worth it to be without pain now.

There are risks and America cannot continue on its current opioid usage and not expect to see the effects. However denying people the right to have a life worth living, a life not destroyed by debilitating pain, is equally horrific. Those with chronic pain are not asking for anything unreasonable; they are asking for life.

A Blessing From The Internet.

Social media is frequently lambasted as being anti-social, unwelcoming, and full of arrogant over-sharers who feel the need to share every last second of their lives with the internet (let’s not forget the self-important bloggers who take this to a whole new level). It’s been blamed for crimes and radicalisation, and is associated with spreading fake news and false evidence that backs up conspiracy theories such as the world being flat. I can assure you that the world isn’t flat because if it was, it would be a damn sight easier to navigate from a wheelchair.

All social media sites have faced their fair share of criticism, whether it be for selling personal data for profit, or altering photographs so significantly that the people in them look more like tall Barbie dolls than they do actual human beings. Perhaps the site that has been the subject of the most controversy though, is the one that allowed the president of the United States to discuss the ever-important issue of covfefe with the public. I am of course referring to Twitter.

I didn’t set up a Twitter account until February 2018, mainly because I had heard so many stories of horrendous trolling and abuse that I didn’t want to become embroiled in the supposed melee. However, I decided reaching out to Twitter would be a cheap and easy way of introducing more people to my way of thinking, so I set up an account while mentally preparing myself for an onslaught of far-right conservatives telling me I would burn in hell for the heinous act of finding Jennifer Lawrence attractive. I was pleasantly surprised.

What I found on Twitter was not a bucket-load of prejudice and malice, but a large, supportive community of likeminded individuals who all banded together to help those around them, even when living on opposite sides of the planet (another one for the flat-Earthers). A lot of wheelchair users and chronic illness sufferers soon climbed aboard the Diary of a Disabled Person train, the only train where you don’t have to pre-book a ramp several years in advance to then play an adrenalin-rush inducing gambling game of whether said ramp will even materialise. I also had people with other disabilities and learning difficulties follow me, as well as a large LGBTQ+ community, some medical professionals, a few academics, and somehow I seem to have attracted a reasonably large black community, which is uplifting considering I’m so white that my skin peels upon exposure to moderate sunlight.

It is undeniable that I have faced plenty of trolls, my particular favourite calling me an unemployed scrounger living off of other’s pity, clearly having never bothered to actually read my blog or refer to any of my social media history. He shut up pretty quickly after I had pointed out the fact that I was responding to his Tweet on my lunch break while sat in the office kitchen. I have also been told that disabled people should be left behind in the dust as a result of natural selection, obviously having failed to consider that many disabilities are developed later in life and are not genetic, nor understanding that humans evolved the trait of intelligence, not the ability to walk far.

However, when I compare the number of trolls I have encountered to all the positive support and encouragement I’ve received from everyone else, particularly during rough times, I’ve come to realise that social media is not the ugly dog-eat-dog situation some people would have you believe. It is, from personal experience at least, a useful tool for connecting with others and learning about our differences, and is a great platform to advocate for social change.

If you don’t already, please do follow me on Facebook and Instagram (@diaryofadisabledperson), and Twitter (@WheelsofSteer).

Smoke on the Pavements.

Despite all the public health campaigns and education programs to discourage cigarette smoking it’s still a relatively common problem, particularly as giving up the habit is so difficult. Even with the invention of nicotine patches, chewing gum, e-cigarettes, and hipsters (we get it, you vape) the process of quitting is nothing short of arduous. While some people get riled by those who smoke because it is a choice they vehemently disagree with I try to have a little more patience as these situations are rarely as clear-cut as they seem. However there is one general trait that is relatively common among smokers that does annoy me; when smoking in public they rarely show consideration to the rest of us using the city streets at the same time.

When the UK government completely banned the practice of smoking cigarettes indoors in public places they failed to consider where smokers could go outside to smoke. It wouldn’t be a UK law if something wasn’t drastically overlooked. So naturally the smokers gather just outside of the door, especially in the winter, and to enter the building you are forced to pass through a thick haze of carcinogenic smoke. This is a problem for everyone, but for anyone disabled we have the additional challenge of navigating around a blocked pavement or doorway just to continue our business.

Breathing difficulties are also a common issue for those with chronic illnesses. I myself am asthmatic and when visiting the doctor we will always be asked to avoid cigarette smoke where possible. Given that to enter or exit a public building, doctor’s surgery included, we have to pass through the crowd of smokers outside this is nigh on impossible.

There is one problem bigger than all of the above that is down-right dangerous for wheelchair users, dwarves, and children alike (even more dangerous than the risk of lung cancer). When not taking a drag on a cigarette most people let it dangle from the end of their relaxed arm which just so happens to be right in our eye-line. I have lost count of the times I have only just avoided a cigarette burn on my face and I know that many parents say the same of their young children. On one occasion where the smoker was crouched against a wall on a narrow and busy pavement, the cigarette actually touched my leg and had I not been wearing tights I would have been burned. Not once in any of these instances has the smoker in question apologised or even noticed that they nearly set fire to someone, which you would think was fairly obvious. In fact many will look over their shoulder, see someone behind them, and continue to do it anyway. It shocks and appalls me that people will be so negligent when holding a stick which is literally on fire and I wish that smokers would be respectful to the rest of the public and their right not to get set on fire.

Of course when it is suggested that smokers should have to walk five metres further to a designated smoking shelter, all hell breaks loose…

Able to Remember.

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There are a plethora of reasons some people use as a means to discriminate against others, such as gender, sexuality, religion, race, and of course, disability. Over the past few years it was realised that if each minority facing a particular type discrimination banded together, forming a much larger group tackling all kinds of discrimination, they would have more power and influence due to sheer numbers. As such it is now very common to see people on social media listing all the types of discrimination that they oppose, but almost invariably there is one type of discrimination absent; ableism.

I do not for one second think that ableism is omitted intentionally, simply that it is forgotten or overlooked. Many people assume that the law protects the disabled against discrimination, but the law is all but meaningless when no one bothers to implement it. Others believe that ableism is a relic of the past, or don’t see why the misuse of special facilities or the obstruction of access routes is, in fact, ableism. Others simply forget that ableism exists at all.

With ableism so easily forgotten it is no surprise that issues such as equal access to transport, particularly on trains and aeroplanes, are still such a significant problem in 2018, nor is it surprising that a very large proportion of public spaces and buildings lack wheelchair access completely. Of course, when most courts lack proper wheelchair access including into the witness box, it’s hardly as if suing someone for discrimination is feasible. Therefore the problems go on unchecked and forgotten.

I am convinced that the first stage in the fight against ableism is simply to raise awareness. Over the past few years I have met lots of new people through university and work, and nearly all of them have said that being around me and observing my daily struggles has opened their eyes to the prevalence of ableism in day-to-day life. Many of these same people have told that me that their habits would change; they would be more reluctant to use disabled facilities unless they really had to, and that they would see cars parked on pavements and get angry without me even being there.

Anyone on Twitter may have seen the #JustAskDontGrab campaign led by fellow blogger Dr Amy Kavanagh, raising awareness of how to help disabled people without invading their personal space or inadvertently causing harm. The campaign predominantly focuses on anecdotes and personal experiences to highlight the issue, and uses the Twitter slogan for the benefit of computer algorithms. Seeing the impact Amy has made started me thinking; what if I could do the same to ensure that ableism is included in the fight against discrimination?

The trickiest part for me was coming up with a social media friendly signature, particularly as I didn’t want something that sounded aggressive or accusatory as I firmly support the fight against all types of discrimination too. Indeed when I finally had my eureka moment on my evening commute, I was so engrossed in thought that I almost collided with a lamp post. Thus #AbleToRemember was born. Now all I needed was a launch date, and I could think of no better than Remembrance Sunday itself. While the soldiers who died in the various wars are honoured by this session, those who became disabled in the war are often overlooked, demonstrating my point perfectly.

Whenever I spot ableism being omitted from a list of all other types of discrimination, I will be sharing it alongside #AbleToRemember, and I want others to do the same. I’m not pointing the finger or being antagonistic; I just want to ableism to become as unpalatable as any other type of discrimination.

#AbleToRemember.png

Time for a Change.

Accessible public toilets are the bane of my existence and the same sentiment is felt among others with disabilities too. Considering that it is a basic human right to have access to a toilet, the difficulty many disabled people have in accessing a disabled toilet is abysmal.

In some places the disabled toilet, if they even have one, is little more than an enlarged cubicle with unsteady grab rails and a broken emergency cord. Sometimes these cubicles are nothing short of filthy, and sometimes they’re being used as storage cupboards. Sometimes they double up as baby-changing facilities creating a problem for both parents and the disabled, and on more than one occasion I have left a cubicle to be berated by an angry parent with a screaming baby for daring to use the toilet. Often enough the baby-changing facilities are not packed away properly after they have been used making it nigh-on impossible for a wheelchair user to enter the stall, and quite often soiled nappies will simply be left on the side instead of disposed of.

In most places there is also usually just one disabled toilet and should someone decide to use the disabled cubicle because it is nearer, or because they want to take a dump in peace (I’m serious, that happens a lot), that delays the person with a genuine disability from accessing the facilities they need. Sometimes people have invisible disabilities meaning that they can’t walk as far as the other toilets or they may have medical waste bags hidden beneath their clothes, so tackling people about misusing these facilities becomes a mine-field.

To combat the situation pro-actively, some establishments have taken to locking the disabled toilet and only giving the key to those who ask for it. However, as I’m sure you can imagine, trying to attract the attention of a member of staff in a busy venue is difficult and rather embarrassing. In the UK there is a scheme with a special key to unlock disabled toilets, providing they have the specific lock available. As I understand it having this lock fitted can be very expensive, so only the big businesses tend to have them.

However, if I have a tough time accessing a toilet in public, then for those who need full changing facilities it must be virtually impossible. I can count on one hand the number of places I know that have full changing facilities, and all of them are large shopping centres stocking exactly the same stock as every shopping centre in the country. The competition for a normal disabled toilet is definitely a problem, making full changing facilities little more than a myth. This forces many people to change on the floor of the stall, which as aforementioned can be cramped and dirty, making it down-right dangerous.

I admit that I can understand the concerns some venues express when talking about full changing facilities; not only do they take up a large space and need high maintenance, but they are very expensive, time-consuming, and disruptive to fit in the first place. They are also still subject to all of the issues disabled people who don’t need full changing facilities face. However, when you consider that access to a toilet is a human right, these arguments fade into futility. Western civilisation has worked so hard to provide the lesser developed countries with essential resources like proper sanitation and yet a whole portion of the population right here face a situation equally as grim.

If you don’t need to use a disabled toilet, unless perhaps all the other toilets nearby are in use, then don’t use it. If you need to use the cubicle to change a baby’s nappy, be considerate of other users including other parents. If you have an invisible disability, don’t be afraid or ashamed to stick up for yourself if you have to. And if, like me, you don’t need access to full changing facilities, try to use a disabled toilet without them if there is one available.