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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.

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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.