The Great Now What is a documentary exploring the after-effects of a debilitating stroke. Maggie uses unique art to communicate how the pain and other symptoms makes her feel, and raises awareness of what happens to those who suffer stroke at a young age.
Watch the trailer and contribute to the crowd-funding here:
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…
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.
Let’s be honest, we’ve all had plenty of cringe-inducing moments that keep us awake at night when you most need the sleep. Much as I would like to say otherwise I am no different in this respect. However where I differ from the norm is that I can blame these horrendous instances on my disability, or more specifically the so-called “brain fog” that plagues people with various chronic illnesses.
As a member of a small team in the workplace I grew accustomed to the little quirks and idiosyncrasies that would make us the perfect subject for a sitcom, were it not for the fact that this idea has been flogged one too many times. Organising a table tennis tournament for one lunch break has been one of my least serious assignments, but being asked to arrange a “cheese day” takes the biscuit (because nothing goes better with cheese than a nice selection of savoury biscuits). For cheese day we are all required to fetch different cheeses to work, and during the team meeting we’ll all enjoy samples of them all, which for an office is an undeniably weird thing to see displayed on the calendar.
Imagine my embarrassment then, when I realise that I had not sent the email invitation to my colleague, but instead had sent it to someone else of the same name in my address book. Fortunately he had an excellent sense of humour about it and is now considering implementing a cheese day in his own office. So if cheese day goes viral, you know who to blame; parents who give their children common names. Like Emma (thanks mum and dad).
I am particularly afflicted with brain fog first thing in a morning, which makes taking my morning medication rather interesting. The most common problem arises with a tablet I take both in the morning and at night in different doses. If I get them the wrong way around, taking the larger dose in the morning rather than the evening, I will spend the rest of the day in a drowsy stupor. This having occurred on a work morning means that technically I have been to work while high and got away with it, a claim that some would use the term “badass” to describe.
Perhaps more worrying was the occasion when I tried to inhale my nasal spray through my mouth, which was a somewhat interesting experience.
While living in halls of residence at university the fire alarm being set off at unthinkable hours by drunk people trying to use toasters was a very regular occurrence. When the fire alarm exploded into life at 2 am in my first week away from my parents I wondered why my dad hadn’t switched the burglar alarm off, which would occasionally go off at night when a spider crawled across the sensor (and never when someone was trying to break in). This is despite the fact that the fire alarm sounded completely different, was much louder, and included a red flashing light on the ceiling for those who couldn’t hear the alarm. Needless to say I was one of the last to arrive at the convening point as we were evacuated.
There is also the story of how this photo came to exist:
Discussing brain fog with a few online friends an accidental misreading lead to brain fog being substituted with brain frog in all of our messages. Given that for some strange reason I have a plushie toy frog (I still have the inventively named Croaky) it didn’t take long before dad took this photo for me. Selfies were harder back then.
By the way, if this becomes a meme the extra publicity is much appreciated.
Like most introverted geeks I’m a big fan of video games, and spend so much time playing them that I’m considering replacing my wheelchair control panel with a game controller. While I’m fond of some role-playing games my favourites tend to focus on either driving skills or combat, perhaps because I’m a weird kind of adrenaline junky who doesn’t like rollercoasters but still wants thrills.
There was a time when I wasn’t as comfortable playing video games as I am now, partly because of the stigma against female gamers that was prominent until relatively recently. It is only in the past year or so that I have come to describe myself as an avid, if casual, gamer. However in that time I have developed a deep love of video games that I refuse to be ashamed of, either for being a woman or being disabled. Nor do I take my gaming habits too seriously; they are what I do when I want a break and maybe a little stress relief, and are particularly fun when paired with a glass of wine (as is the case with a great many things).
A good video game is as immersive as an Agatha Christie novel and triggers genuine emotions as the story unfolds. Admittedly the emotions from Doom tend to be more of the “DIE YOU —— ——-“ type, but Horizon: Zero Dawn is a little more nuanced in between beating up giant robots with a spear. A game that can invest you in the setting, characters, and stories so beautifully feels real as you play. It doesn’t feel like I’m pressing buttons to move a digital image; it feels like I’m there reacting to the situation as it all happens. This is undeniably exhilarating for anyone, but for me it means I can experience the thrills of vigorous activity while only getting a cramp in my thumb. If a game is good enough it feels as if I can run and jump and do crazy somersaults that I couldn’t even manage pre-disability, let alone now. Besides, everyone deserves a little fun now and then.
At this point I probably sound like some over-invested nerd and perhaps to some extent I am, but I’m not exaggerating when I say that for a few all-too-short hours I am virtually cured. If for the rest of my life this is my only taste of having a fully-functional and not-painful body then I can live with that. I’m not about to start a gaming channel on YouTube, partly because I would only embarrass myself with my rather comical ability to fall off a cliff at the worst possible time, every single time.
Everybody has their favourite recreational pass-time and I am no different, disabled or otherwise. Sometimes we have a tendency to overlook the importance of recreation and how it can benefit us in unexpected ways. Now if you’ll excuse me, the PlayStation calls…
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.
