Just a quick reminder that I won’t be posting tomorrow due to the small matter that is my honeymoon. However, if you don’t already, you’re definitely going to want to follow me on Instagram (@diaryofadisabledperson) because my feed will be straight fire all week!
I have been asked to give a Ted-talk at the Disability Labour Association on Thursday 14th March, at Leeds Civic Hall.
So, if you want to hear the dulcet Yorkshire tones behind the blog with your own ears, be there from 6.45 – 8.00 pm.
If you’re really nice, I might even take a selfie with you (cake bribes optional).
Next week I’ll be heading to London for my honeymoon, so for the first time in Diary of a Disabled Person history, I’ll be taking a week off from blogging.
Diary of a Disabled Person will return on Sunday 10th March with brand new content!
In the meantime, you can keep up with everything I get up to on Facebook & Instagram (@diaryofadisabledperson), & Twitter (@WheelsofSteer).
Don’t miss me too much!
There are lots of assumptions made about disabled people. It’s assumed that we are stupid, have no desire for independence, are lazy, ungrateful, uncooperative, and only our mothers could ever love us due to our needs. It’s assumed we’re not educated, employed, or even able to break the law (disclaimer: I am not a criminal, I’m making a point, please don’t call the FBI). There is, however, one assumption that to me seems the most problematic, and is responsible for a lot of the disagreements between able-bodied and disabled people: our mobility aids are seen as a prison.
Less than a year after contracting viral meningitis I was told by a physiotherapist, who at the time was advising my parents to buy me a wheelchair, not to become overly dependent on said wheelchair. It instilled within me a fear of my wheelchair and I used it as little as possible, unable to admit to myself when I really needed to rest. I almost seemed to be in denial that I was ill in the first place. That, among other factors such as being denied the right to drop some classes including gym and dance, and the very same physiotherapist pushing me through Graded Exercise Therapy far too quickly, led to the deterioration of my health. I spiralled out of control until I was begrudgingly using the wheelchair every time I left the house.
At this point I faced a difficult choice, neither of which could be defined as right or wrong. I could “give in” to my illness and embrace the use of a wheelchair, or I could shut myself indoors in the hope that I would get well again. Essentially I had to sacrifice either my health or my education. Spoiler alert: I let my health take the fall.
My wheelchair was never a prison. It enabled me to finish school, go to university, get a job I hated, get a job I loved, have a social life, and GET FRICKING MARRIED. I go shopping, I go for meals out, I go for drinks, I go to the cinema, and I’ve even been clubbing once or twice as a student (not really my scene). My wheelchair isn’t a prison, it’s my freedom (and now the title of this post makes sense).
I strongly believe that if more people understood this they would stop feeling sorry for me, and therefore they would be able to see that I’m a (relatively) normal person trying to do this “adulting” thing. The notion that “surrendering” to the use of a mobility aid is a bad thing is a terrible notion. Yes, being in a wheelchair has its flaws (see the entire rest of this blog for evidence), but I don’t for one second regret getting into the habit of using it simply because my quality of life has actually improved. I’m not confined to a wheelchair, I’m liberated by it.
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.
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?
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.