It’s Not Easy Being Green.

There are countless political parties, pressure groups, and lobbyist groups in support of reducing fossil fuel consumption, non-recyclable waste, and any other practices that damage our planet. On the whole I am in support of these groups and think we should preserve resources for future generations wherever possible. However, there is one aspect of these groups which I find infuriating. It may not be intentional but disabled people are often victimised and penalised by these groups for needing extra resources.

Take the recent movement to ban the use of plastic straws. These straws were actually created to make it easier for people with various mobility issues to drink independently, and banning or placing a tax on them immediately leaves disabled people unable to drink in public. Most of the people lobbying for the ban simply hadn’t considered the existence of disability, but those who had thought of it waived it off as such a minor proportion of the population as to be negligible. It’s not like we need fluids to survive or anything, and we should all be locked up indoors anyway.

Once the fact that disability is a thing had been realised, some suggestions were put forward. Some suggested using paper straws as an alternative despite obvious flaws such as the inability to hold their structure in liquids, and also the lack of a bend near the top which is the element that enables disabled people to drink. Others suggested buying a pack from the supermarket, having failed to realise that finding them in a shop is difficult at the best of times, and that reduced purchases of straws would result in many shops choosing not to stock them. No one realised that those who didn’t need them could stop using them, leaving those who did to use them in cafes in peace, and altering the supply and demand so as to reduce the production of straws in the first place.

Similarly there has been a movement to ban the use of excess plastic when packaging foods, in particular highlighting the pre-peeled citrus fruits packaged in plastic. For most people this is ridiculously and needlessly wasteful, but what about those of us who have difficulty peeling these fruits? The idea of getting someone to peel the fruit for the disabled person was tossed around under the assumption that everyone with a disability has a carer there 24/7 to do their bidding, and also has no desire for independence. Again, simply not buying these products if they’re not needed would solve the problem.

Another contentious issue is recycling. The bin store in my building has a step in the door so either I have to walk, or it gets left until Jarred has the time to do it. We also cannot recycle glass, instead having to take the trip out to a recycling centre. I would be happy to do this despite the inconvenience, but of course the bins are completely inaccessible. I absolutely would recycle more but if I can’t access the facilities to do this, I have very little choice in the matter. When I admit that I don’t recycle every last piece of glass I expose myself to criticism and verbal abuse, and am told I’m just not trying hard enough. Once again disability is forgotten and neglected.

Finally comes the issue of transportation. I can’t ride a bike, obviously, so if something isn’t within the range of my wheelchair battery I rely on vehicles. The use of public transport is encouraged and, while buses are mostly manageable bar the odd rude customer or having to wait several buses for one where the wheelchair space is available, trains are virtually impossible to use. When disabled people choose to use taxis or their own vehicle, which is of course larger and heavier due to the need to carry equipment and thus spitting out more fumes, we are lambasted for being uneconomical. In one admittedly extreme scenario I have even been told I should be using a manual wheelchair instead of a powered one, and that my laziness was killing the planet. The idea that some disabled people might actually need a motor instead of being able to self-propel was preposterous to them.

The brutal truth of the matter is this; when disabled people are treated as equals with individual needs by the eco-friendly groups, we will be able to support their initiatives. Until then there isn’t a lot we can do apart from let these people know that being green simply isn’t that easy.

Mission Impossible 5: Time for a Holiday.

Everyone needs to take a break every now and then, and I’m sure it comes as no surprise when I say that even going on holiday is problematic for those of us with a disability. If it does come as a surprise, you might want to crawl out from underneath that rock you’ve been living under.

The first hypothetical hurdle comes when choosing where to go. Holiday parks like Disneyland are probably a relatively safe bet when it comes to accessibility, but not everyone enjoys eating pure glucose while being harassed by princesses and having to dodge around marriage proposals on every corner. City breaks provide a solution to most of these problems if you can cope with the heavy levels of traffic as everyone not lucky enough to be on holiday travels to work. These also rely on venues being accessible, something which is not always guaranteed. For those who aren’t especially fond of other human beings there are many beautiful historical and geographical marvels around the UK, particularly around North Yorkshire and the Lake District, but mountains and castle ruins aren’t the most wheelchair-friendly terrain.

The next thing to consider is accommodation. I was never one for camping as the idea of sleeping on lumpy grass while rain batters the tent mere inches from my face, and having to check food for insects before eating it does not appeal to me. While there probably is a wheelchair friendly tent hidden in the annals of the internet, I imagine it would cost a pretty penny, so camping is immediately ruled out. Youth hostels are often affordable and have accessible rooms, provided you can cope with sharing a space with delinquent adolescents. Independent hotels are never guaranteed to have accessible facilities, so the easiest route is to hope that a chain hotel in the area has an accessible room free for when you want it.

Most difficult of all is the consideration of transport. There are countless instances of air services losing wheelchairs, literally leaving the wheelchair user stranded in a different country while the staff try to figure out what all the fuss is about. Trains are also horrendous. Booking assistance to get on the train is like disability roulette as many a time it simply doesn’t materialise. Wheelchair spaces are often two narrow to accommodate a wheelchair, as are the bathrooms, and on occasions trains insist that wheelchairs are stored in luggage carriages (at an extra cost) at which point they get lost. Coaches can only accommodate manual wheelchairs that fold up and fit in the luggage component, although the drivers are usually trained in how to handle disabled passengers so are significantly better than trains and planes. Travelling any distance in buses or taxis soon accumulates great cost, and it is common for a disabled taxi to turn up very late, or the wheelchair space on a bus to already be in use.

All in all, the stress of organising everything and dealing with the inevitable accessibility issues often makes going on holiday feel like hard work. I know many people who choose to have a “staycation” instead, where they stay at home and only visit places in the local area for relaxation. Non-disabled people might find this concept ridiculous, but when going back to work feels like the holiday you were supposed to have, what’s the point in going at all?

The Working Days.

After an unsuccessful stint in the NHS which ended in redundancy a mere seven months after it began, I was lucky enough to find a new role in the medical research team at the university where my adventures began, and was only out of work for a little over a month. I promised many moons ago that I would write about being employed when I got there, at the time not realising that my upcoming work in the NHS wouldn’t make for good reading. Once there I decided to wait for something better to come along, and in a rare instance of good luck, something did.

The alarm rings at 6 am and I groggily emerge from the covers to eat the breakfast provided to me by Jarred, while he rushes to get dressed and catch the bus out to his own job. Often I will read for a short while before going to take my medicines and get dressed. I force my unruly curls into something resembling a neat bun and apply minimal make-up, before checking emails and social media. At 8.30 am I start my commute.

The university is near enough for me to commute as a pedestrian, ploughing through the crowds at bus stops and silently praying that one day they will realise I’m as a regular a commuter as they are, and figure out that keeping the pavement clear might be helpful. The route is probably only a mile long but the crowds make the journey feel longer, and I usually arrive at the office a few minutes before 9 am (depending on how many people took the stairs that morning). While I wait for my computer to wake up I get a hot drink from the nearby kitchen, and then I get to work.

My actual role in medical research is somewhat difficult to describe as it’s more classified than James Bond’s butthole, and disclosing too much could lead to me facing criminal justice (let alone getting fired). However, as always I am utterly committed to fan service, so here we go.

Every medical research trial has a team of people behind it who take the study design as instructed by the clever people in lab coats and actually make it happen. This team deals with practical and ethical concerns around recruiting participants, consent, and data collection, as well as liaising with sponsors and government bodies to keep everyone informed with the latest developments.

Within this team is a group who handles data collection and storage. Data is sent to us, entered into a secured database, and is then checked for errors, discrepancies, and missing information. This is the point where I come in, making sure that all of these little problems are resolved. This data can then be used by the statistics team to address the research hypothesis, and the more complete and accurate the data is, the better this analysis will be. My background in nutrition and understanding of statistics has certainly leant itself well to this role.

In between this data cleaning work are the usual meetings and goings on of any busy office, and I’m lucky enough to get an hour long lunchbreak in the midst of it all. By 5 pm the fatigue is starting to rise exponentially, so I log out, pack everything back into my desk, say goodnight to any colleagues still in the office, and head home. The pavements are equally a crowded but with no pressure to be somewhere for a particular time, this isn’t a problem.

I arrive home at approximately 5.30 pm, get a warm drink, and check social media, before going for a bath. After that I rest, often picking up a book to read until Jarred gets home at 9 pm. We get tea together, usually the defrosted half of something I made at the weekend, catch up on our favourite You Tube channels, and then go to bed. I don’t seem to have any trouble falling asleep, and morning quickly comes round again.

Finding a job – what happened next? – My Family Our Needs

Here’s a little mid-week treat for you all; what’s it like to be disabled in employment?

This ties in perfectly with next week’s blog post, which will have more of a focus on what my day-to-day working life is like.

Nomination: The Flawesome Award.

I’m incredibly proud to announce that Diary of a Disabled Person has been nominated for a sixth award; the Flawesome Award!

I hope to accept the award on Sunday, provided I have time to write the acceptance post by then.

Until then, many thanks to The Invisible Vision Project for their kind nomination.

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.