Diary of a Disabled Person.

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.

Equality & Inclusion Committee.

As a member of the Equality and Inclusion Committee at work, I don’t just write about what accessibility looks like, I take action too.

Of course I’m centre-stage; I’m too fabulous not to be.

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.

The Flawesome Award.

A few days ago I was kindly nominated by The Invisible Vision Project for the Flawesome Award, an award created by Sophia Ismaa, to be awarded to bloggers by bloggers who have overcome their personal flaws, and used them for good in their writing. I was incredibly flattered by the nomination, not least because this now makes me a 6-time award-winning blogger after only 2 years of Diary of a Disabled Person.

In order to accept the reward, you are required to acknowledge the award’s creator, Sophia Ismaa, and also the blog who nominated you, in my case the Invisible Vision Project. You must then list three flaws and demonstrate how you turned them into strengths, before nominating another 10 bloggers for the award.

It took many hours of intense thinking to come up with three personal flaws, as they are so few and far between. Nevertheless, I persisted for the sake of my art, and managed to come up with the following:

I’m reluctant to compromise.

There is an old idiom that says “You can tell a Yorkshireman, but you can’t tell him much”. Now I’m no man but I’m very Yorkshire, and while I tend to dislike stereotypes, this is one which cannot be denied. As my parents and now my husband will tell you; I’m really fricking stubborn.

This little quirk has caused much trouble in the past, predominantly when trying to forge friendships with peers and colleagues, and also when it comes to knowing when to relent and be grateful for what I had already achieved.

However, there are also plenty of occasions when compromise isn’t an option. Accessibility is one such example. There is no halfway-house with accessibility; either something is accessible or it is not. This extends beyond simply having ramps, lifts, toilets, & hearing loops etc., but actually having them available for use, not blocked, not impeded, and not hidden behind a staircase that someone else must climb to get the assistance you need. Something as simple as blocking an access route or forgetting to put out the ramp is all that is needed to render something inaccessible. I’ve tried being nice with the people who do this, but my protests fall on deaf ears. It’s only when I put my wheels down and refuse to compromise that I am listened to, and I know that this is the same for many other disabled people.

I don’t take things as seriously as I should.

If something goes wrong my instinct is to laugh about it. This is fine when, say, a pigeon flies into the window and you spill your drink, but not so much when something goes really wrong. It frustrates those around me no end when I simply don’t recognise certain situations are wholly inappropriate for a joke. It can make topics such as moving house or changing jobs an absolute nightmare for anyone working with me, as instead of getting the paperwork done, I’m sat in the corner mocking the situation.

Fortunately, I have been able to put my ability to laugh at anything and everything to good use. I have only coped with my long-term health issues because I have been able to laugh at them, including when I needed emergency surgery to remove my gall bladder (although laughing really did hurt then). Similarly, I have used it to educate others about life with disability, and to normalise and humanise disability to make it easier for others to cope with. There’s nothing like making a corny pun about the wheelchair to set a stranger at ease, meaning they can focus on the conversation we’re having, instead of panicking about what they should say to me.

I don’t like to let my feelings show in public.

The general public’s reaction to seeing a wheelchair user out and about is to ignore me so hard that I know they’ve noticed me, and that they’re simply pretending I don’t exist to avoid an awkward interaction. Sometimes people will physically push past you while still pretending they hadn’t noticed me, despite the fact that deciding to push past is a decision made based upon the fact that they’ve seen me. On other occasions I get comments from strangers, most commonly about how fast “it” goes, and whether I’ve got a licence to drive it. From time to time, I simply get blank stares.

Perhaps though, if I showed my displeasure at such occurrences, the public would take note. Perhaps they’d realise that their words and actions are upsetting, and try to make changes to their behaviour around disabled people. Perhaps they would take notice of all that disabled people report on social media, and to the news.

This characteristic, though, serves to protect me. If I stopped to challenge everyone who made my life more difficult than it already is, I would never get anywhere or do anything. I would also be exposing myself to torrents of verbal abuse, and even on occasions threats of physical violence. Keeping a stony face, helped out by headphones that can block out the comments, has allowed me to go about my daily business and live my life.

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Once again, I’d like to thank The Invisible Vision Project for their kind nomination, and without further ado, here are my nominations:

Seeing ME In Reality.

The Disability Diaries.

Wheelescapades.

The Life Quadraplegic.

A Backpack, A Chair, and A Beard.

My Fitness Journey with Fibro.