My terrible #YourTaxis experiences

I love the #YourTaxis backlash. Never has one company or collection of workers made me so stressed, upset, and angry.

I’ve been using taxis as my main form of transport for the last 11 years. I have a physical disability which means I use an electric (and sometimes manual) wheelchair for mobility. This disability requires me to use wheelchair cabs and the service I’ve received is degrading and unacceptable.

For the first five years, I was attending high school and had a fantastic consistent driver. However, as soon as I came off government paid transport, I’ve had terrible treatment by the taxi companies and their drivers.

What prompted me to finally make a formal complaint after all these years of bad service was an interaction with the taxi company and driver. I teach at  a university and at 1pm that day I rang and booked a taxi to pick me up from the taxi rank at 8pm to take me home after a day’s work. I sat in the cold and waited until 8:15pm until I finally saw the cab. I tried to wave him down, but he drove straight past me. I waited until he looped back, and once again he ignored me. I then rang the operators, was on hold for a further 10 minutes, and told that he couldn’t find me. I was in a well lit area less than 10 metres from him, it would have been impossible not to see me. I finally got his attention and told him I’d been waiting for 25 minutes to which he shrugged and casually said sorry. There was no sincerity behind the apology. I had angry tears in my eyes and when I got home, burst into sobs.

This is not an uncommon occurrence for me. I book wheelchair taxis hours in advance so that I can arrive to my job on time and a lot of the time they are late and/or the driver has no idea how to strap me in and dawdles for a further 5-10 minutes. They usually turn the meter on as well, costing me more than it should for my trips. Other times when I have called for a cab to come as soon as possible, I’ve been left waiting 30 minutes to an hour. I have discussed this with some taxi drivers and they have informed me that this is because wheelchair jobs aren’t as profitable. This is unacceptable. When I order a cab hours in advance to be there at a certain time, that’s what time they should arrive. My time is just as important as anyone else’s. I’m paying for your service, I would like to get what I’m paying for.

I called to organise a set price for my trips to work as I was getting various prices (ranging from $27 to $40). It was set as $27 for specific days and times were arranged. The following week when these were supposed to go into effect, knowing my history with the company’s treatment of me, I rang to double check my cab was coming at the set time, and there was no record of my set price and schedule. I was livid that I had wasted all that time organising and nothing had come from it.

Once I am in the cab, the driving has been reckless and painful for me. Taking corners too quickly and stopping suddenly. I can only imagine what it feels like for individuals with disabilities worse than mine, as well as the elderly.

I’ve had drivers treat me like a child, speaking slowly and condescendingly to me. I am not stupid. On many occasions they have asked ‘What’s wrong with you?’ or ‘What happened?’ inquiring about my disability, which is none of their business. It has caused me significant mental anguish. Furthermore, I’ve had drivers stand uncomfortably close to me whilst strapping me in. I’ve travelled in wheelchair cabs for over a decade now, I know that that kind of contact is unnecessary to physically strap my wheelchair in safely.

My treatment has been degrading and has made me feel like a second class citizen. I detest using Suncoast Cabs, but as they have the monopoly on the Sunshine Coast, I have no choice.

I do have to note that of course not all drivers exhibit this behaviour, some are polite, on time and professional.

I have spent well over $15,000 using taxis over the years and I expect better.

I expect the drivers to know where they’re going. You don’t go to a restaurant, order a meal and then have the chef come up to you and say ‘Look I’m not sure how to cook this, can you guide me through it?’.

I expect the taxis to be on time if I’ve ordered them hours beforehand.

I expect to be treated like a normal person, not talked to like a child, asked rude questions about my disabilities, or not talked to at all!

I expect to be strapped in safely so I am secure and will not flail around as the taxi speeds around sharp corners.

Oh, and trust me #YourTaxis, if Uber started to offer wheelchair accessible rides, I wouldn’t think twice about switching.

PhDisabled

PhDs are tiring. Deadlines, reviews, reading, writing, meetings, ethics, worrying that you are not smart enough, and boring your family and friends with your specific knowledge and problems with a fraction of a section of a discipline. It takes 3 years before you can add ‘Dr.’ before your name, and unless you are granted a scholarship, you also have to work. By no means am I complaining about having this wonderful opportunity, but I wanted to express the difficulties I’ve encountered having a major physical disability whilst completing my PhD.

I have a rare form of disability (especially rare for women) called Limb Girdle Muscular Dystrophy. It’s a genetic condition which involves the deterioration and weakening of my muscles from the neck down over time. I can walk a few steps with aid, but spend most of my time in a wheelchair and need help with most daily routine activities. Luckily it won’t affect my speech or mental faculties, so I can always make myself heard and understood. I’m in my second year of a PhD in neuropsychology, specifically researching autistic children. I make my living by tutoring undergraduates and occasionally writing the odd piece on my area of speciality. I don’t get any special treatment at my university, and I prefer it that way but sometimes I want to (metaphorically) stamp my feet, throw a tantrum and rant about being tired, worn out and in physical pain.

Ever since I was a child, my parents knew there was something physically wrong with me. After years of being fobbed off to different specialists, I was eventually diagnosed at age 11. I have always been fiercely independent and refused to use a wheelchair in the first few months of high school. As part of the condition’s symptoms is bad balance and lack of strength, I finally succumbed to the wheelchair after months of attending school being petrified of being knocked over by rowdy pre teens. From then on I’ve been adamant that I don’t need special treatment or considerations in life based solely on my disability. It’s resulted in a lot of people calling me ‘brave’, which has always confused me. What is brave about wanting to be treated equally?

Another common comment I receive when people hear I’m doing a PhD is that I’m ‘inspirational’. Would they say that to an able bodied person? Admittedly, sometimes I inspire myself. I look back through my short life and my achievements and think ‘You know Holly, for all the obstacles that have been in your way, you’ve done alright. Keep it up’. Other times, when it’s late at night, and I’m sitting up in bed reading my 27th paper and my neck and back are screaming in pain, I feel like giving up and mooching off the government for the rest of my lousy life. Of course, all PhD candidates experience this, but I don’t think they all need to recuperate after short trip to the grocery store, need daily physiotherapy, or need to ensure that every venue or place they travel to is wheelchair accessible. If I’m unlucky enough to catch a cold or develop the flu, I’m flattened. Imagine being at the weakest you’ve ever been, then add a flu. Sometimes I feel like the boy in the bubble, if a member of my family is sick in any way, they’re not to come near me!

Unfortunately, with my physical disability comes a mental one too; depression. I’m on medication for it and it’s under control, but sometimes the monster rears its ugly head and the last time this happened I’d spend hours at a time unaware I was gazing numbly at a blank wall while time to work on my PhD submission slipped away. I’d open my work document and stare at the pixels on the screen. I thought it was stereotypical writer’s block until I started to not want to leave the house, and then my room. I’d experienced a suicidal thoughts/plans depression black hole a few years previous and was scared this would be my last one. Luckily this bout left me so numb and unmotivated, I couldn’t be bothered ending my own life. I was petrified of facing my supervisor and admitting I had done nothing in the past few months. I got to her office, my depression robot took over and I very matter-of-a-factly told her I suffer from depression and that I was in the middle of an episode. Luckily, I work and study in my university’s psychology faculty so it was nothing she hadn’t seen before. She reassured that she knew that I knew what I was talking about with regards to my literature. She asked me right then and there to tell her what autism is. I could easily verbalise it, of course I could, it’s my life’s work and passion. “Great, now go home and write down a few sentences about autism. That’s it. No more” she said. My clouded brain hadn’t even considered the possibility that I could condense my work into bite size pieces. It worked. Within a few weeks I was back on track. I’d increased my anti-depressant dosage, and the fog was lifting.

A year later and I’m about to start my experiment. Unfortunately, this usually exciting part of one’s PhD is at risk of being dampened by my body’s regression. I am right handed, but I have relied on my left hand and arm for most tasks as it physically the strongest. My disability has interestingly made me almost ambidextrous which if you HAVE to find the silver lining, is a cool bonus. However, over the past few weeks I’ve experienced a noticeable decrease in strength and control in this arm. It’s frightening. What will this mean in a month? A year? What abilities will be removed permanently from my life? Brushing my teeth? Picking up a drink? Actions that the average able bodied people don’t think twice about are now disappearing before my eyes. It is difficult to take a piece of paper in the form of a PhD accreditation seriously when I’m losing my independence and livelihood day by day. What’s the point?

The point is that I have no choice. If I had nothing to strive for and distract myself with, I would ruminate on my body’s fate. I’ve done that before, and it nearly killed me. So when people call me ‘brave’ and ‘inspirational’ it makes no sense to me. What’s my alternative? This is me surviving.

How the 2014 Australian Budget made me ‘Check my Privilege’

You can’t buy much with seven dollars. Maybe a large fancy frappuccino Starbucks coffee, or a sandwich. To me, $7 is nothing. I just spent $7 on a bumblebee costume for my cat. So why is this GP $7 co-payment such a big deal? Why are people so up in arms about university becoming more expensive? Or having to wait 6 months to receive financial assistance from the government?

This latest Liberal government has made me ‘check my privilege’. As much as I hate that phrase, it perfectly sums up my thought process over the last few weeks. Now by no means am I using $100 notes as toilet paper, but I’m very financially comfortable, and have been for most of my life. My financial stability is mainly provided by my parents, as I’m still living at home and only have a part time job. I pay board, and I finance all my own purchases and socialising activities. Ideally I would have liked to have moved out of home by now, but I have a debilitating physical disability which makes working full time difficult and living independently close to impossible. I am very thankful to the Australian government who has provided me with a Disability Support Pension since I was 18, and I’ve never taken it for granted.

Despite my disability, I’ve had a very privileged life. I received a $12,000 academic scholarship for my undergraduate degree, and my parents and I went halves in paying for my Honours degree, so I have no HECs debt. I physically can’t drive, so I don’t have a car or petrol to pay for (although it does cost me $30 to get to university and back every visit, but that’s a complaint for another day). I don’t have to think twice about how to pay for things I need or want. I feel guilty admitting that because I know for the majority of people in Australia, and even around the world, this isn’t the case. I’ve always known that I was lucky in this way. I don’t consider myself ‘spoilt’ as my parents have instilled a very hard work ethic in their children, and we’ve always had to work for our money. Whether that was chores when we were kids, or getting a part time job when we were teenagers (I worked around my disability as a young teenager by making and selling jewellery at the markets), we were never given money, nor did we expect it from our parents.

‘I’ve worked hard for my money’ is a sound-bite often thrown around by millionaires. Before the budget came out, I thought this about my situation too. But after listening to and reading people’s stories about how the budget drastically will affect their lives, I realise that it is absolute bullshit. How is being raised in an upper middle class family, having my university paid for, going on overseas holidays, and being at university for 6 years ‘working hard’? I’ve been given every opportunity I could want. My education has been great, and although my need for healthcare has been quite extensive due to my disability, my parents have always been able to pay for my blood tests, heart scans, hospital stays, and medication.

This is why I was initially puzzled over the uproar about $7 payments to see a GP. Why was it such a big deal? Seven dollars is nothing. It wasn’t until I started to read about the backlash that I truly considered what seven dollars might be to a single mother who only makes enough to cover rent, food and power, or a pensioner relying on government assistance to survive. Then I started finding statistics about average incomes in Australia (this breakdown helped put it in perspective: http://mattcowgill.wordpress.com/2013/05/13/what-is-the-typical-australians-income-in-2013/). Without revealing my parent’s income, I discovered I was within the top 1% of the nation. I was genuinely shocked. How had I been sheltered from this reality my whole life? I thought we were just a comfortable middle class family. I really hope that this blog post doesn’t come across as bragging or ‘poor little rich girl’, because that is not my intent. I am just attempting to explain how my privilege has blinded me from some realities in life, and how eye opening these past few weeks have been.

Being raised in such an individualistic, capitalist and classist society can really warp your view of the world. I still react to stories of poverty with ‘well why don’t you just work harder/get a better job?’. It’s deeply ingrained and I’ve only just started to question it. It’s very embarrassing to admit to myself just how privileged I am in this aspect of life, but I hope by continuing to seek out more information and people’s stories I can understand and help others to as well.

Does watching porn make you psychic?

I think a lot about porn. It’s fascinating to stop and consider that we’re living in a time where within seconds you can search for and see a naked stranger engage in sexual acts tailored to your preferences.

As much as we all like to believe we’re not primitive chemically driven animals, our brains are not much different to that of cavemen and women who lived tens of thousands of years ago. Sure, we’re great at adapting to the latest smart phone, and achieving our high scores in Candy Crush, but our brains are not used to nor have they evolved for the onslaught of information that comes from watching porn. For all of humanity, the acquisition of sex has been our number one goal. Our entire evolutionary journey is based on who can adapt to their environment well enough to stay alive and do the horizontal tango with a fertile partner. This involved effort; primping, preening, strength, intelligence, a bit of Machiavellianism, and bravery. I’m not suggesting that humans don’t do this anymore. Go to any club on a Friday night and you’ll see this in action (usually sans ‘intelligence’). Our brains were made for this. I also believe that there is a part of our brains that was made for porn.

The concept of mirror neurons seems like pseudoscientific rubbish. They are neurons that fire only when you see another human or animal perform an action, eg scratching their arm. Your brain recognises that this other being is engaging in this behaviour and fires the same somatosensory cortex neurons associated with that behaviour. The only reason you don’t act out these actions is because your visual system kicks in and tells you that your eyes/occipital lobe have not reported that same sensation on your arm. Therefore, your brain receives no message from the skin on your arm telling you that it’s being scratched.

Essentially, mirror neurons are empathetic neurons, helping you connect with other humans and animals by inadvertently feeling what they feel. This is why you wince when you see someone get hurt. For a tiny fraction of time, your brain thinks you were also harmed in the same way. I believe it’s the closest that humans come to being psychic.

It’s not difficult to see how these mirror neurons may be employed whilst watching porn. An fMRI study was conducted with a sample size of 10 healthy heterosexual men (I acknowledge that this is a small sample) where their physical erectile response and their brain activity was measured whilst they viewed pornographic videos. Unsurprisingly, eight out of ten of the subjects experienced an erection, but the more scientifically exciting results were that of their brain activation.

‘The level of activation of the left frontal operculum and of the inferior parietal lobules, areas which contain mirror neurons, predicted the magnitude of the erectile response. These results suggest that the response of the mirror-neuron system may not only code for the motor correlates of observed actions, but also for autonomic correlates of these actions.’ (Mouras, et al., 2008)

Isn’t that incredible?! Pretty sure I had a nerdgasm when I came across this journal article (no pun intended). Of course all studies need to be properly reviewed, and limitations considered, and this is no different, but I just can’t help but get a bit excited when I read studies like this. These scientists have found mirror neurons that activate and predict an erectile response. This means that when you’re watching porn, your brain actually thinks that you’re engaging in these sexual acts. Before your frontal lobes and ‘common sense’ can tell you that you’re really alone and just watching a video of other people, your ancient primitive brain is making you feel like you’re really there!

This adds a whole other level to understanding why porn is so enjoyable for most humans. Objectively it shouldn’t be very pleasurable; you don’t get to join in and it may even further remind you that you’re forever alone. Yet ever since humans could create scratchings on cave walls, we’ve been depicting each other having sex. Pornography is not new, what’s new is our immediate access to it. There are many who cry that porn is bad for you, it degrades women, and it makes men slobbering idiots. I think they’re worrying too much about what people do in their own time. My view is that if all parties are consenting adults (the person viewing the porn and the people featured in the porn) and it’s not hurting anyone else, then go for it. For those who insist that porn is the devil because it’s so addictive, I dare them to find something that cannot become addictive. Addiction occurs when the brain fires reward based chemicals (serotonin, dopamine, oxytocin, adrenaline) whenever the behaviour occurs. If the behaviour is repeated too much, the brain needs to work harder to release these chemicals. Technically, you can get addicted to anything. Do you LOVE model train sets? Bubble wrap? Vegemite? If you get a big enough ‘high’ from using these things, you can become addicted. A behaviour only becomes a problem if it is maladaptive. If porn is interfering with your ability to work or maintain relationships, then you may need help. Other than that, I believe that porn is just another fun thing that humans have discovered that they enjoy.

Science has come through for us again. Sure, it’s not time travel or a solution to world hunger, but it’s an amazing insight into the goings on inside the most complicated structure in the universe; our wonderful brains.

 

 

Aforementioned study: http://www.sciencedirect.com/science/article/pii/S1053811908006897

The Philippines Typhoon – Proof that an ‘all loving’ God does not exist

The Phillipines typhoon hasn’t been getting enough media attention because the victims aren’t middle class white Westerners. If this had happened in America, there would be 24 hours of coverage and a fucking charity concert.

I’m not going to post photos of sad hungry kids because I don’t think you should be emotionally coerced into donating. I think you should just do it because it’s the right thing to do.

Be a humanist. Care for your fellow humans. Forgo a boozy night or a few pretentious coffees and donate to help the kids who have NOTHING.

If you’re in Australia, donate through here: https://donate.savethechildren.org.au/typhoon

For everyone else: http://www.savethechildren.org

My response to Stella Young – Some things are worse than death

It’s hard to disagree with someone you’ve always admired and respected as an intellectual and advocate for causes close to your heart. I experienced significant cognitive dissonance whilst reading the wonderful Stella Young’s article on voluntary euthanasia ‘Disability – a fate worse than death?’ (http://www.abc.net.au/rampup/articles/2013/10/18/3872088.htm). My primitive brain couldn’t wrap itself around the surprise that came with reading about Stella’s opposition to legalising assisted death in any form. Don’t get me wrong, it’s a great article with some points that did make me question my stance, but my vehement support for voluntary euthanasia held on.

I believe in humans being able to make their own decisions, as long as these decisions don’t harm others. Take drugs, get fat, get tattoos, have an abortion, swear, refuse medical treatment, or dance naked, I don’t care, just don’t hurt others if you decide to do so. I do acknowledge that some of these actions could indirectly hurt others, such as family and friends suffering with a loved one’s drug addiction, but I do believe that’s their choice. As someone with a lifelong debilitating disability (muscular dystrophy), choice is one of the most important things in life for me. I’ve been stripped of many choices in life; I didn’t choose to be in a wheelchair, I didn’t choose to have others help me with everyday activities, and I didn’t choose to suffer from the mental illnesses that come from this loss of choice. I didn’t choose this life; I was just an unfortunate participant in the genetic lottery. Don’t get me wrong, I have a fantastic life. I have loving friends and family, I’ve had a great education, and I’m a generally happy and content person.

I just want the choice to control my own life and more importantly, my own death.

Stella stresses the misconceptions that the general public have about people with disabilities and their apparent quality of life. She’s right; most people assume that a disabled life would be unbearable. There’s a prejudice, but unfortunately this prejudice is sometimes accurate. Some disabled people’s lives are shit. There’s no sugar coating it. There’s no amount of therapy, help or positivity that can change some people’s circumstances. If this is truly the case for some people, why not give them the CHOICE to end their lives with dignity? There are some things worth than death, and being in great pain, discomfort and misery are some of them.

Of course this doesn’t mean that everyone with a disability should kick the bucket. That’s the beauty of voluntary euthanasia, it’s voluntary. This is why I can’t see how someone could be opposed to it. It is a personal choice that an individual will make, having considered all the options, and being deemed mentally fit to do so. The rules will need to be incredibly strict to avoid what Stella discusses in terms of discrimination and ill treatment from medical professionals, I agree with her wholeheartedly with that.

I think assisted suicide is the next step in bettering our society. Death is an important part of life. We need to remove the taboo and fear around it. I believe that everyone, regardless of disability, should be able to choose when and how they die. I definitely want to be able to control my own passing. My particular type of MD deteriorates my muscles over time, rendering them weak and essentially useless. There is no set diagnosis for me. I don’t know what my condition with be like in 6 months, a year, or a decade. When it gets to the point where I feel excessively debilitated and I have no quality of life, I’d like to be able to choose to die comfortably. I will inform my family and friends that it’s my choice and that yes, it will be upsetting, but continuing living would be even more upsetting for me.

I know it seems morbid for a young woman to be planning her own death, but I’m not scared of death. Without getting too philosophical or deep, I don’t see death as the end. I’m not religious at all, but I take comfort in the fact that the atoms that made up who I am will then be redistributed into the universe, from where they came. I’ve always been open about my desire for an assisted death when the time comes. My family is well aware of my wishes and accept my reasons. They love me enough to support my choice.

That’s what it is; a choice. A choice we need to offer those who want it.

Being sick makes you appreciate life (no shit sherlock)

This isn’t a pity post. If I wanted pity I could just jump in my wheelchair, go and sit at a cafe and look sad. I get enough pity in my life.

This is a post about being sick for an extended period of time. Most colds or flus last about a week or so. I’ve been unable to leave the house except for doctor’s appointments for about 4 weeks now. I have a mystery virus that is making me weak as fuck, nauseous, in pain, tired, lethargic and I’ve lost my appetite (noooo!). Because of my MD, it’s hitting me hard. My already weak body is being battered by whatever this crapballs illness is. I’ve had to turn down invites to outings, and I’ve had to blow off my boyfriend visiting 2 weeks in a row. It’s getting ridiculous.

But that’s not the point of this post.

I thought as a cripple, I was pretty limited in my mobility and life choices. I use a wheelchair, and as you can imagine, they’re not exactly suited for fun activities like going to the beach, or road trips or sky diving. Yes, that escalated quickly. I’ve always just sighed and said ‘oh well, that’s life’, maybe had an angry cry if I really felt I was missing out, but then I’d move on. However, now that I’ve been basically bed bound for a month, unable to even concentrate on my thesis or work that I CAN do from bed/home, I’m appreciating my past freedom even more. Sure, it was restricted, but it was my reality. I don’t know any different. But now that I do know different, this different is shit, and I want to go back to being a somewhat restricted cripple.

I’m not a ‘silver linings’ type of person, but if I had to extract one from being too sick to move, it would be that life isn’t that bad in my restricted cripple state.

(Thanks for reading, I know it’s not a particularly interesting post, but I’m going bloody insane and needed to word vomit my thoughts out. Isn’t that what blogs are for?) 

My stem cell treatment fantasy

Like many people in their early 20’s, I spent my Saturday night watching a documentary on stem cells. It followed three people with different health afflictions (ranging from a paraplegic spinal injury to heart disease) as they visited different universities around the world to see the progress they were making with stem cell research. Before I continue, let me just say ‘F*CK YEAH SCIENCE’, because I was amazed. There were beating hearts made from scratch, bone replacements, and a finger being grown back. The scientists were passionate about dedicating their lives and research to help others. I didn’t detect any hint of them doing it for fame or notoriety (it just might be a nice added bonus for them). The faces of the three people in the documentary lit up when they were told that science was on the brink of amazing regenerative stem cell therapies, and I have to admit, I felt a little flutter of the heart. This surprised me, as I usually don’t pay much attention to ‘Stem cell cures in 10 years!’ articles or stories. I don’t cling to hope of a cure for my Muscular Dystrophy as I fear I will only be bitterly disappointed. I’m not saying a cure or treatment will never be discovered, but I prefer to live my life in the here and now, not wish it away with false hopes.

This flutter of the heart then exploded into hours of fantasies about a cure, the treatment, and what my life would be like. I never let myself think about these possibilities as they often lead to melancholy when I come back to reality, but this time I just let go and let it happen. Here’s an insight into my mind holiday:

Even if the treatment is discovered and available in 15 years, I’ll only be in my mid 30’s. I’ll have a whole life ahead of me. After all the necessary rehabilitation and settling into my new life I would start the day getting out of bed by myself, my feet touching the carpet without pain and strain. I would leisurely WALK to the kitchen to make myself a coffee, lifting the kettle myself. Then I might WALK over to the couch, which would be an amazingly comfortable alternative to my usual wheelchair. After that, I’d get dressed without help, complete my bathroom routine and WALK out the front door into the sunshine and go for a RUN along the beach. My endorphins would flow, I’d sweat and I wouldn’t have to look out for cracks or dips in the ground that my now redundant wheelchair would usually have trouble with. I’d come home, freshen up and drive (after the appropriate lessons and licenses of course!) into town to meet up with a friend. We’d WALK together and I’d order a coffee, not having to worry about my weak arm shaking when I lift the cup of burning hot liquid to my lips. All of this would happen without people staring at me as they go by. I would blissfully blend into the background. Noone would give me a pity smile, in fact no one will notice me at all. I would then WALK into a store that I normally couldn’t access in my wheelchair before due to steps or a cramped layout. If I find something I like, I can try it on in the changing rooms instead of buying it, taking it home, then trying it on. After a bit of shopping I’ll drive home and start to prepare dinner. I suspect it will only be a simple meal as I’ve never been able to cook due to my weak and unstable arms. After eating my home cooked meal, I’d then change into something fancy (by myself) and start to get ready for a night out. I’d order a normal non-wheelchair taxi to take me to meet my friends at a club. I’ll be able to wear heels for the first time, so I might be ambling around like a baby giraffe. Finally, I would do what I’ve missed so much in life; dance. The joy I got from dancing before I was diagnosed would come flooding back to me as I freely moved my body to the music all night long. I’d then stumble tiredly back into a taxi to take me home where I’d get into bed by myself, fall asleep, then wake up and start the whole day again.

I know it’s not a normal fantasy. There’s no rockstars or mansions, but it’s a normal life. My stem cell treatment fantasy.

Put down the ‘Body Image’ article and have a spoonful of concrete

I’m really sick of articles, features, blogs and stories about body image. Before I go on, I do acknowledge that looking and feeling good is a really important part of one’s self esteem and self-worth, and that society in general is very superficial when it comes to judging people according to their beauty. These aspects of body image have been covered extensively, to the point where every new feature on it is flogging a dead horse.

Haven’t we got more important things to focus on? I feel like writer’s talents are wasted on whining about how mean society is, how they feel pressured to feel thin, etc. If I hear another story about how ‘plus sized normal women need to be represented in magazines and on the runway’ again, I’m going to stab someone in the eye with rusty scissors. Do you know what I do if something minor annoys me? I IGNORE IT. Is anyone making you buy those magazines or watch those fashion shows? I know the argument of victim blaming pops up a lot and that ‘I shouldn’t have to change MY behaviour, they’re the ones in the wrong’. I would appreciate and support you in this argument if the issue wasn’t so frivolous and unimportant.

If you identify as a feminist or a humanist or any ‘ist’ you want, aren’t we supposed to be fighting the big battles? I’m pretty sure when women were fighting tooth and nail to be allowed to vote and control their own finances they weren’t worried about how well their petticoats fittted them or had even heard the term ‘body image’. I personally feel embarrassed and prone to facepalming when I see an article about how a woman has ‘ignored society and embraced her body!’. Have we gotten to such a point where we need to high five each other for figuring out that women come in all shapes and sizes?

Before I get any cries of ‘You don’t know what it’s like to be fat/ugly/-insert other body image problem here-!’. You’re right, I’ve never been overweight, I don’t know what it’s like to be judged on my looks.

Oh wait, yes I do.

For most of my early teenage years I was obsessively aware of my body, but unlike most teens, this was because I had just started using a wheelchair due to an advance in the breakdown of my muscles after being diagnosed with Muscular Dystrophy. I’d worry that people were staring at my legs, their shape, their state, etc. I’d cry myself to sleep about my legs, my bony shoulders and my hairy arms (a combination of my dad’s hairy genes and extra growth due to my skinniness). So don’t think I’m discounting anyone’s body image feelings, I’ve been through it myself, but then something changed. In my late teens I received psychological and medical treatment for my depression and anxiety and started focusing on improving things I could control. My body had failed me, but my mind was still sharp and amazing (this isn’t opinion, it is a fact, brains are amazing). I feel like I had an epiphany where I realised that people were going to stare and judge me anyway, so I had to have a spoonful of concrete and accept it.

Of course, like everyone, I have bad days where I want to throw a tantrum because I don’t look as good as I’d like to. But do I let it take over my life? No. Because there is so much more to life. I’ve found amazing role models in my life who exemplify exactly who I want to be when I grow up.

Someone who has made me appreciate life and not care about eating that extra Tim Tam is my mum. She recently recovered from breast cancer after having her breast removed. To her, the removal seemed to be a no brainer. She was so brave. So brave that this cancer tragedy turned into a bit of comedy between her and I. When we’d go shopping together, she’d push me in my wheelchair and people would look at her (she was wearing a scarf after her hair fell out during chemo) and give a sympathetic smile, then look down, see me in the wheelchair, do a double take, and try to look even more sympathetic and caring! We were ‘Cancer and the Cripple’.

My university lecturer is another one of my heroes. We have so much in common that I suspect she’s me in twenty years through some kind of space time continuum warp. I’ve never seen her wear a speck of makeup and her attire usually consists of a t-shirt and pants. She’s one of the most intelligent, funny, classy, and amazing people I’ve ever met. Whenever I’m agonising over a hair out of place, or an unsightly pimple, she pops into my mind and I think ‘Ahh fuck it’ and ignore it.

I really do believe that a lot of body image problems can be solved with a ‘Ahh fuck it’ attitude and a change in priorities. Do we really want our lives to be controlled by a mixture of fat, skin, muscles and bones? It should be filled with experiences, learning, laughter, friends, family, music, writing and love. Put down the fashion magazine and eat a spoonful of concrete.

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Hey y’all,

Since I frequent nearly all the social media websites ever made, I thought why not make a Fearblandness Facebook page? Come and ‘Like’ me and we can be BFF4eva!