International Day of Disabled People.

My blog is called Diary of a Disabled Person, so I could hardly ignore the International Day of Disabled People, could I? I actually marked the occasion yesterday by attending an event hosted by Leeds City Museum, celebrating the empowerment of disabled women. I am only marginally offended at not being asked to speak.

One of the first people to speak to me when I entered the room was none other than the Lord Mayor himself, accompanied by his wife. I was blown away to see such an important figure at such a low-key event, but it was a very encouraging sign. After the mayor returned to his other duties I was helped to a cup of coffee by a very friendly member of staff, who also pulled out a seat to leave room for my wheelchair. That was when the string quartet in the corner began playing Christmas songs. I had great difficulty in stopping my pinky finger from being held aloft as I sipped my drink.

 

The Lord Mayor opened proceedings with a self-deprecating speech about how he felt that he, an able-bodied man, wasn’t the most appropriate opener for an event about disabled women. This set the tone for what was to come perfectly.

First up was British Para-athlete Kare Adenegan, Young Sports Personality of the Year and holder of the world record for the fastest 100 m wheelchair sprint, having usurped Hannah Cockroft’s record earlier in the year. She talked about how she was inspired by Hannah Cockroft’s performance at the 2012 London Paralympics, but that her school weren’t equipped for wheelchair sports, not knowing how to cope with her needs. Eventually she found a coach who did have those resources and skills, who encouraged and trained her. That coach must have done something right as in her first season as a junior para-athlete she was ranked within the top 10 in the world. In 2015 she competed in her first senior championships, achieving 2 bronze medals. In 2016 she went to Rio, where she won silver and bronze medals, just as she had done in the world championships that same year. Finally in August 2018, mere weeks after breaking Hannah Cockroft’s world record, she landed her first senior gold medal at the European championships in Berlin. There didn’t appear to be any hard feelings between Kare and Hannah, as footage shows them holding hands afterwards.

If these achievements weren’t enough to make us all feel inadequate on a Monday morning, she’s also doing her A-levels, and plans to go to University while maintaining her sport career.

As her segment drew to a close, she said one thing which I found incredibly relatable; “Disability has allowed me to have so many opportunities that I wouldn’t have without it”. This is a sentiment I have expressed several times before, and I agree whole-heartedly.

Next was Hayley Mills-Styles, a thread artist who uses and teaches needlework as a form of therapy and recovery. Her art focusses in particular on mental health, with one piece containing 52 small items representing each week of a year living with depression. She received many emails and messages from people who had seen her art exhibits thanking her for her efforts, as they reflected the feelings of others so accurately too. If nothing else, it seemed that people were comforted in knowing that they weren’t alone in their experiences. Hayley has also produced studies of how she ate when depressed, performing intricate cross-stitches of various food wrappers.

One of her projects stood out from the others; the Positive Patchwork project, produced by a group with various eating disorders at a local hospital. Although Hayley herself only contributed a small piece to the patchwork, she taught the patients new skills that they could take forwards as a form of therapy, enhancing their chances of full recovery. While the end product was impressive, she specified that it was the making of the patchwork that was the most important, as this was the therapeutic part.

Hayley was followed by Susan Hanley, a Leeds resident with a similar needlework business called Leep1. Susan is heavily involved in campaigning for disability rights, raising awareness of ableism and tackling hate crime, and regularly corresponds with local political figures. In 2010 she was voted Yorkshire Woman of the Year and is also a graduate of the Tomorrow’s Leaders Programme, a programme that helps disabled people gain skills in activism and leadership, skills she has used as a member of the People’s Parliament. Perhaps my favourite of her efforts though was arranging disability-friendly club nights at various nightclubs around the city, allowing disabled people to go on a night out without worrying about accessibility. It seems that in the midst of all her hard work, fun is a vital element of her life.

Finally came Sue; unfortunately I didn’t catch her last name. At one time Sue had normal vision, but then a viral infection of the optic nerve of her left eye induced inflammation, resulting in the steady loss of eye-sight in her left eye. Then, one morning, she woke up and could only see a solid wall of yellow. It was the last colour she ever saw.

The same virus that had blinded her left eye had now invaded her right eye, and soon her sight was lost. This would be tragic for anyone, but for a talented and passionate artist this could be seen as career-ending. But not for Sue.

Sue realised that she could feel the indentations left on paper by a pencil, and taught herself to draw with her right hand by using her left hand as a guide. Using this new skill she went to college, and then to the Bradford School of Art, but became frustrated as she could never see or fully appreciate the finished piece, only segments of it. Thus she turned to ceramics and 3D sculpture, something which relied on structure, shape, and texture, all of which could be experienced without vision. Thus she graduated with her degree and has continued to produce art; art which often prominently features the colour yellow, a colour indicative of both happiness and disease. Even for someone like me who tends to take things at face-value, the significance of that colour to Sue is clear.

Afterwards I stayed for a while, chatted with those around me and handed out leaflets for my blog. Rounding off the day perfectly was the view I got as I left the museum, before hurrying home to get this written and recorded.

 

 

My Family, Our Needs: My Article is Available Now!

Recently I wrote an article about job-hunting as a disabled person for the website My Family, Our Needs. It was published today and you can check it out here:

https://www.myfamilyourneeds.co.uk/emmas-job-hunting-journey/

To those of you who have already found my blog via this article, welcome! Please do like and subscribe to get brand new content every Sunday (and sometimes even in between, because I’m nice like that).

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).

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.

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Attack of the Brain Fog.

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:

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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.

The Virtual Cure.

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…