Nutritional Nutters.

Some would say that completing a degree with a disability is quite an achievement, but as a Millennial even the greatest of achievements pales in comparison to the terrible flaws displayed by my generation that will surely be the end of society itself. People will always find faults if they are looking for them, and as such, it has been made apparent to me that being disabled with any sort of medical knowledge is completely incompatible, because surely everyone with this knowledge is in perfect health all the time, and would cure themselves with their knowledge should they fall ill.

Approximately a year ago, I was diagnosed with iron deficiency anaemia, which I have since recovered from. At the time, the response I invariably received upon revealing my deficiency to someone was, “But I thought you were a nutritionist”.  The truth was that a tablet I was taking limited the absorption of iron in the intestine, and despite my dietary iron intake being perfectly adequate, most of the iron was quite literally being flushed down the toilet. Of course, despite the fact that I have spent three years and thousands of pounds dedicated to the subject, the person I was speaking to knew far more than me having read about it Wikipedia, and I was just making excuses for being a poor nutritionist. Just about anyone with any medical knowledge or experience in a clinic will roll their eyes at this point; while I can hardly criticise using the internet, because well… I’m on the internet, it can be the bane of our lives.

The same logic has been applied to my disability; admittedly there are a few dietary tricks that can help maintain energy levels throughout the day, but certainly there is no scientific evidence showing a particular diet that will immediately cause me to leap out of my wheelchair completely free of disease for the first time in over 7 years. The closest I ever get to feeling like that is when someone offers me chocolate cake, because although I know the many ways in which cake could potentially kill me, I like cake, particularly the chocolate kind. The fact that I am chronically ill is frequently used to evidence my incapability in my chosen field, which is almost as annoying as receiving a smug look before being told nutritionists shouldn’t eat chocolate cake. Why this would apply specifically to nutritionists and no other human being on the planet is beyond me, but clearly I know only that I know nothing.

There is also one deep flaw in the thought process behind such accusations; nutrition is very rarely used as a cure, but is actually used to treat a disease or manage symptoms. Ask any diabetic this, and they will confirm that no matter how many visits they have with a dietitian, altering their diet will not make their pancreas behave itself, merely managing the consequences. Likewise, I use nutrition to help me manage the symptoms of my condition, not to cure it. By my, albeit somewhat biased logic, this makes me an even better nutritionist, as I have experience in altering the diet to suit my needs, while still satisfying my cravings for chocolate cake. It is by stating that nutrition rarely cures to the people I deem to be “Nutritional Nutters” that I return their self-satisfied smugness, in a dish that is far more nutritious when served cold.

The Many Theories of M.E.

Despite the recent surge of developments in medical research surrounding the condition, the internet is rife with a myriad of pseudo-scientific theories from non-medical experts describing what causes the condition, how it can be prevented, and how it can be cured. These theories are often demeaning to sufferers of M.E (a.k.a. CFS) claiming that we simply don’t look after our bodies, or that it is nothing but a cry for attention. They also tend to support the claim that M.E is not a real disease, reinforcing the negative stigma surrounding what I can assure you is a very real illness.

There is, however, one redeeming feature of these theories; they can be down-right hilarious.

One I hear a lot from people who know that I have a first class honours degree in nutrition is that my illness is the result of multiple nutrient deficiencies, and could be cured by using over-the-counter nutrient supplements. Considering my knowledge of the subject, my ability to tailor my diet to my needs, and to recognise the symptoms of nutrient deficiencies in myself and others, this theory denies all logic. Similarly, if I needed nutrient supplements, the doctor would prescribe them. The only noticeable effects of the store-bought nutrient supplements in the absence of a deficiency is the excess nutrients excreted (meaning the expense quite literally gets flushed down the toilet), and sometimes the onset of nutrient-overdose. Which can have quite serious and permanent effects, such as death.

This is far from the only ridiculous theory I hear. One commonly encountered by M.E sufferers across the world is the idea that we simply need to exercise more. Our “laziness” has led to us being so unfit that this becomes symptomatic. This of course does not apply to all the other unfit people on the planet who suffer no symptoms at all when resting, or walking to the bathroom. I have been told time and time again that my symptoms result from muscle wastage, despite the fact that while I do have much weaker muscle tone than average, you can still see some muscle definition across my whole body. I am told to push through the “pain barrier”, but I can assure you that the pain barrier does not exist for M.E sufferers, and the pain simply gets worse the longer you remain active for.

I have also been told to get pregnant. The logic behind this one is as follows; after undergoing nine months of growing a miniature parasite inside your body, which takes a great deal of energy, and then squeezing the thing out like trying skinny jeans on while being in denial about your clothes size (we’ve all been there), the maternal instinct of holding the baby would override the tiredness signals from my brain. Now I don’t know about you but my personal encounters with new parents show a distinct trend of utter exhaustion from the lack of sleep and constant nappy changing, plus the energy requirements for mothers who choose to breastfeed are substantial. This is all without mentioning the fact that attempting to cure a disease is entirely the wrong reason to have a baby (I know a lot of women suffering from endometriosis hear the “just get pregnant” theory a lot too).

The most ridiculous theory of them all, however, is that I am possessed by a demon and need to be exorcised. I doubt this one needs to be explained, and I have nothing more to say about this one other than “what the F is wrong with some people“.

So please, medical research is a serious career path, and these people know what they’re talking about. Listen to them!

Movie Magic.

I’m a huge nerd (surprise), and practically wet myself whenever a new Marvel or Star Wars film is released. 2018 alone should be enough to dehydrate me, and I’ll be spending so much time in dark rooms watching films that I’ll probably develop rickets to boot. I already use a wheelchair so it’s not like this matters exactly.

One of the best things about being disabled is that I can get a friend into the cinema for free as my carer. Then I receive a student discount on my ticket and I use my handbag to smuggle snacks into the cinema like the bad-ass gangster that I am, saving us even more money. I’ve often spent less than £10 going to see the latest blockbuster at peak times, making trips to the cinema with friends and family a frequent occurrence. The local cinema is highly accessible with modern lifts, smooth floors, open spaces, and spaces for my wheelchair in every room, rendering it a safe bet for a good night out, particularly when paired with a trip to the pub afterwards. It’s clean and warm, and laughing at the antics of Deadpool or Star Lord in the company of like-minded people is always a pleasure.

A couple of years ago the film about Stephen Hawking was released, and naturally I was interested in seeing the life of one of my roll models (sorry) depicted on the silver screen. I went to see it with my best friend and we both thoroughly enjoyed it. However I couldn’t help noticing that as the lights came on and people filed out of the cinema while the credits rolled, that the majority of them would give me sympathetic looks despite having spent two hours exploring patronising attitudes to disability. Sat in the pub afterwards holding a drink in my gloved hands this made for amusing conversation, and the irony of the situation was not lost on me.

I know I’ve mentioned the fact that being in a wheelchair means that I can go and see kids’ movies without judgement, and the same applies for arriving at the cinema draped in Star Wars paraphernalia and squeaking whenever BB-8 made an appearance. On the way out I can’t help zig-zagging from side to side while emitting “pew, pew, pew” noises pretending to be an X-wing as part of The Resistance, and not one other movie-goer batted an eyelid. I must also admit to occasionally using my walking stick (which is glittery because if you need to use a walking stick, you might as well make it a stylish one) as a light sabre around the flat, doing my best to imitate the infamous sounds while Jarred buries his head in his hands in despair. My father taught me well…BB8.jpeg

Mission Impossible: Go Shopping.

What might seem to be simple everyday tasks for the majority of the population can become Herculean feats with a malfunctioning body, and one of these things is to go shopping.

Most modern supermarkets have excellent accessibility around the store; if not you could hardly be expected to use a trolley. For one thing, they often provided lower tills so that a wheelchair user doesn’t need a periscope to arrange their shopping on the conveyor belt or successfully pay for their selected items. However, there still remain a few issues for wheelchair users in particular, mainly to do with height. The items on the highest shelves are usually completely unreachable, although I have learned that if I sit staring longingly at an item on the top shelf, someone will come and reach it down for me. The prices displayed below each product are not visible to me on the top shelf, so on the odd occasion I may get a nasty surprise when trying to predict how much something will cost me.

Unfortunately items on the lowest shelves are also difficult to reach as the sides of the wheelchair restrict how far I can bend over to retrieve and item, and if I try to face the shelf, my feet and legs get in the way. It’s usually a little more difficult to convey that I might need some help because no one can see my facial expression, although I don’t usually have to wait too long before someone comes to my rescue.

The freezers are perhaps the worst offenders in a supermarket; the glass makes it easy to see each tantalising product, but trying to reach over the lip of the freezer to grab hold of the desired product is almost impossible, and my hands grow cold after mere seconds in the sub-zero temperatures. The freezers higher than this present the same issues as the high shelves elsewhere in the supermarket. I could, of course, ask someone for help, but I’m English; making any face-to-face contact with total strangers is awkward and uncomfortable.

None of these things are the fault of the supermarket, and there would be little they could do to improve accessibility without massively reducing the availability of products due to the limited shelf space reachable from a wheelchair. However, I can only wish that other shops would follow suit. There are so many shops out there with even just a small step in the door that means I cannot enter, and pubs are often the worst offenders. Admittedly since many disabled people take some form of medication, all of which state not to drink alcohol whilst taking those tablets, you could say they were actually being responsible by being inaccessible. Unfortunately I’m not sure that they’ve ever given the issue so much thought. In many cases only a small and relatively cheap ramp would be needed to resolve the issue, and they would be able to make more money simply by allowing more people into the store.

Unfortunately even when shops do have accessible facilities, they may choose to misuse them. I have lost count of the shops I have entered that use the disabled changing room as a store cupboard, and have had to navigate the wheelchair around large boxes and racks of new clothing. I also know a shop in a mall, where accessibility is supposedly prioritised, which has a small platform lift next to the three steps up into the main body of the shop. The lift is entirely blocked off by clothing rails and mannequins, and I can therefore not purchase anything, despite having bought lovely clothes from other branches of the same brand in the past. When asked, staff tend to shrug their shoulders nonchalantly, stating that it “wasn’t their decision”, and that “I’d just have to go elsewhere”. This is naturally frustrating and also a bit demeaning, although it has probably saved me a lot of money.

The shop owners that do make their facilities accessible not just to wheelchair users, but to all those with any kind of disability or other issue that might hinder their ability to go shopping, will make more money than those without access. Effectually this is a classic case of “voting with your feet” (choosing to go elsewhere if the shop in question isn’t good enough), although this statement is perhaps not the best thing to declare in front of a group of disabled people…

Rollywood.

I hope you’ll pardon me for the over-use of the “roll” pun, but I’m finding it quite entertaining seeing just how many phrases I can crowbar it into.

Apology aside, let me get to the point; there are a few issues with the depiction of disability in Hollywood. While it is wonderful to see films using more diverse castings to portray characters on the silver screen, and the portrayal of disability is usually far from offensive, there are a few inaccuracies that invariably work their way into the mix.

Take “Avatar” for example, a film that chose to be a nerd’s wet dream of intricate graphics over the interesting character development and deep political messages it could have shown. The protagonist is a wheelchair user who, upon the death of his identical twin, is called in to take his place in the avatar scheme. As he enters the military camp for the first time two soldiers can be heard making demeaning remarks about the wheelchair, referring to the protagonist as a “sack of meat”. I have never once encountered such blatant discrimination; in my experience discrimination is much less obvious, and people may not even be aware that they are doing something that inhibits my ability to access a room or perform a task. Similarly, I expect that this is not an accurate representation of the way the military reacts to disability as it is something that can happen so easily in combat that they are regularly exposed to it, although of course I may be wrong.

Another recent film, “The Hunger Games” also fails to represent disability at all, despite it being an important part of the storyline. Those who have read the books will be aware that Peeta loses his leg as a result of an injury inflicted during his first time in an arena. Katniss uses her last arrow to form a tourniquet that, while it results in the loss of Peeta’s leg, keeps him alive. This is completely brushed over in the films, alongside Katniss’s loss of hearing experienced as a result of an explosion that requires expert medical aid to repair, and a meaningful bonding moment between Katniss and Peeta is lost, impacting the later films.

When Hollywood isn’t presenting disability as a cruel and unforgiving circumstance where no happiness is ever felt, it is presenting us as unrealistic super-powered beings with the mental and physical strength of warriors. Anyone familiar with the X-men franchise will immediately realise that Professor X falls into this category, although Patrick Stewart certainly brings a depth to the character that stretches beyond the wheelchair and his mind powers. A more obscure example occurs in “Mr No Legs”; a man without any legs has a wheelchair fully equipped with weapons such as throwing stars, and practically uses the arms of his wheelchair as a pommel horse to defend himself against an onslaught of fully able-bodied men, and the brakes of his wheelchair aren’t even on. While people in wheelchairs are capable of defending themselves to the best of their abilities, it would be completely ridiculous to have a wheelchair so heavily armed that you wouldn’t be allowed to progress more than 100 metres without the police stopping you for a serious conversation. The same goes for wheelchair bombs, which are a clichéd move that I have seen in many films and TV programmes.

Nor are wheelchair users are not some kind of evil genii who manage to use their disabilities to manipulate the world around them, going through trial after trial to highlight their “superpower”. While the plot of “Unbreakable” is much more complex than this, and the characters are far more intricate, I cannot deny that seeing a wheelchair user depicted as an anti-social creep with maniacal ideas makes me uncomfortable.

It would be nice to see more movies where a character’s disability is not a major plot point and the disabled person integrates normally with the rest of the characters, as disability should not be the defining trait of anyone but a mere characteristic. It is no wonder people are uncomfortable and awkward around disability when we are portrayed as either warriors or creeps on the silver screen, never just the average-Joe extra who keeps getting their day ruined by the protagonist’s misadventures.

Ignorance is Bliss.

Despite having reproduced for millennia, humans continue to marvel at the mind of a child and the way it tries to piece together the coalition of chaos that is life. This often provokes brutally honest and usually quite amusing reactions to social situations, which arise from the ignorance of complex societal norms created by adults with the sole purpose to make other’s lives as miserable as their own. A child’s views on disability are no exception to this, and in particular young children will not treat someone in a wheelchair differently to someone who can walk. They also occasionally think we’re mermaids (https://diaryofadisabledperson.wordpress.com/2017/06/10/the-real-mermaid/).

One summer, I was browsing the isles of the local supermarket searching for a birthday present when a little girl with blonde pigtails and big blue eyes tottered round the corner, almost into my wheelchair. She stopped and looked up at me, before asking in earnest;

“Are you poorly?”

I smiled and confirmed this.

“Will you get better though?” she continued.

“Hopefully,” I said in reply.

“And you’ll be able to walk like me?” she asked.

“Absolutely,” I returned.

Throughout this exchange, the blonde woman who I presume was the girl’s mother looked utterly mortified and desperately tried to coax her daughter away. I looked up at her, smiled, and said it was absolutely fine. I would much rather children ask the questions they want to ask instead of staring silently at me, so as to break the taboo surrounding disability. Children are remarkably robust when facing the negative aspects of life, and are rarely as perturbed as we might have assumed. As such, disability and sickness should not be hidden from children, as it is simply a part of real life.

Sometimes, children have wonderful reactions if they see that the adults they are with have blocked the path of a wheelchair. In many instances children have pulled prams, bags, baskets, or even the adults themselves out of the way, allowing me to pass safely. On a good few of these occasions, the adults have even received a ticking off from the children. My personal favourite occurred after a distracted mother let a door swing shut in my face. Her son, a boy of maybe 6 or 7 years old, came back and held the door open for me. His mum called out for him to stay with her in a somewhat irritated tone, and in response the boy told her he’d only tried to be nice, as she had taught him. He then attempted to say it was “hypocritical” without much success, which fortunately broke the ice and the mother relaxed and apologised.

At other times, it has been me who has been the first to speak to a child if the situation calls for it. I remember on one occasion I was in the local park and a girl was riding her scooter down the hill much faster than her dad could walk. Unfortunately the front wheel of her scooter got caught in a rut in the pavement and the girl went headlong over the handlebars, landing heavily in a messy heap. The closest adult to the fall didn’t bat an eyelid and walked past almost as if they hadn’t seen or heard what had happened. As the next closest adult I went to the child to check she was OK and handed her a tissue to wipe her tear-stained cheeks. Her injuries were very minor, superficial scrapes to the skin, but the shock of the fall seemed to be what had upset her. I remembered doing almost exactly the same thing ten years before, on another hill within the same park, and said as much which made her smile. Seconds later her dad arrived, almost out of breath from trying to stay upright on the slightly slippery path. He smiled and they both thanked me before we went our separate ways. It was not that a disabled person had stopped to help that required gratitude but the fact that a person had stopped to help at all, and I fully believe that they would have spoken to anyone else in exactly the same manner.

The ignorance of these children towards the taboo surrounding disability did not bring bliss to themselves alone but also to me as a disabled person, and I can only hope that as they grow and develop their inclusive attitude is unmarred by the loss of their ignorance.

Midweek Cringe-Fest.

So I was digging through some old notebooks that my parents had kept and then brought to my new apartment, and I found these two beauties. Bear in mind I was in the middle of puberty, at the peak of awkwardness…

The children smile,

They don’t discriminate,

Very few decide,

To gawp and gape.

 

I’m not so different,

As you’d like to think,

If I may be blunt,

I’m not thick.

 

Please don’t stare,

What if I stared at you?

I’m in a wheelchair,

Not an animal at the zoo.

 

I’d like to say,

That life is fine,

I’m free of pain,

But that’s a lie.

 

I’m not gonna mope,

Though I’d love to cry,

Is there any hope?

Will M.E say goodbye?

 

Please don’t stare,

What if I stared at you?

I’m in a wheelchair,

Not an animal at the zoo.

 

The children smile,

They don’t discriminate,

Very few decide,

To gawp and gape.

Complete with badly drawn wheelchair:

Wheelchair.png

A couple of months after writing that first one, I wrote this:

A giant hoover came out of the sky,

And sucked all my energy away,

Then came the lead weights tied to my limbs,

I have to pull them night and day.

 

I lie awake in the night to find my sleep stolen,

Right from under my nose by a robber,

Unrefreshed, unhappy, and unrested,

Why should I even bother?

 

It hasn’t got better, it hasn’t got worse,

At least I know where I’m at,

I feel so small, so insignificant,

In the wheelchair in which I’m sat.

 

But at least I’m sure of two things in life,

Two things it has taught me so well,

I know for sure who my true friends are,

And not to take them for granted, even if I’m unwell.

Let’s just say that I think my writing skills have improved since then…