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.
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.
Most people don’t like being labelled as ‘ists’; sexist, racist, homophobic…ist. Have you ever considered whether you’re an ‘ableist’? That’s right, there’s another word to make you feel guilty about your privileged status. This time, this privilege comes from having been born healthy or not having been involved in a major accident. Statistically, there’s a large chance you are an ableist, and according to the blogger ‘Bitch on Wheels’, you carry an invisible ableist back pack (which you can easily carry because you’re physically healthy enough to). I came across this list of privileges and thought it would be a bit of fun to describe my experiences with some of the items included.
A bit of back story is needed of course. I am ultimately better than you because I am not an ableist. I have a physical disability called Muscular Dystrophy. It basically means the proteins in my muscles deteriorate over time, making my whole body (from the neck down) weaker. This leads to me losing the ability to do normal things such as walking, bending, reaching, and somersaulting. I was diagnosed when I was 12 and currently spend the majority of my time in a wheelchair. It’s become normal for me, I’ve adapted, because I have no other choice. However, there are some things that I shouldn’t HAVE to adapt to, as they are discriminatory and condescending, and this is where the ableist’s back pack comes in.
I’m only going to address the items that most apply to my situation, but if you’d like to see the entire list, check out Bitch on Wheel’s blog here: http://exposingableism.wordpress.com/2009/10/12/the-invisible-backpack-of-able-bodied-privilege-checklist/
- I can, if I wish, arrange to attend social events without worrying if they are accessible to me.
I’m guessing that not a lot of you have to worry about whether you’ll be able to fit into a certain venue, unless of course you’re the Hulk, but I think if that’s the case, you’ve got bigger problems. I have to research most venues before I attend social events. This includes ringing restaurants to set up wheelchair accessible tables, ordering specialised seating at concerts, and asking friends to scour their houses for small steps or difficult doorways. I miss out on many social gatherings due to their locations, which I’ve come to accept, but there’s still a bitter stab of disappointment when I realise I’ll be missing out on a fun beach party or bonfire.
- I am not called upon to speak as the token person for people of my mobility level
Now this might not seem strange or offensive to you, but imagine if you were called upon to represent a group of people because of something you were born with. Would you feel comfortable representing everyone with brown eyes? Or everyone who is left handed? Of course I’m completely in support of anyone who chooses to speak for those with disabilities. Disability advocates have made the world a better place for me, and without them, I wouldn’t have ramps built at my university, or government funded help. However, I have been approached many times to speak on behalf of those with Muscular Dystrophy, wheelchair users, or people with varying disabilities, simply because I was born with it. I don’t feel that I can speak for others. Everyone’s experiences are different, and my story doesn’t represent everyone’s.
- I can do well in a challenging situation without being called an ‘inspiration’
This is a major item for me. This is where the condescending nature of people is revealed. Before I continue, I need to say that 99% of people do not mean any harm when they talk to me like a child, they’re simply ignorant of their behaviour. This isn’t a case of people being mean or abusive, it’s a lack of insight into the lives of those disabled people they’re talking to or interacting with. I’ve had people rub the top of my head, pat my shoulder, talk slowly and loudly to me, and completely ignore me and talk to whoever is with me at the time. It even happens with medical professionals. These are people who should know better, yet I’ve still had doctors address my parents with questions about my health whilst I sit there, staring straight at them, mouth agape. Along with the blatant condescending treatment, the amount of times I’ve heard the words ‘inspiration’ ‘proud’ and ‘brave’ be thrown around will make you feel a bit queasy. I am very proud of myself and how far I’ve come, because it would have been much easier for me to curl up in bed and refuse to open the curtains (although there have been periods in which I did this). However, when people congratulate me for doing normal things such as graduating high school, going to university, etc, I feel like pointing to the able bodied student next to me and saying ‘We both had to do the same work and pass the same tests’. I didn’t get where I am today because of my disability. I got here in spite of it. I’ve done nothing out of the ordinary. When I conquer Mount Everest, then you can give me a congratulatory high five.
(For a much better and funnier article about ‘Inspiration Porn’ check out one of my favourite writers, Stella Young: http://www.abc.net.au/rampup/articles/2012/07/02/3537035.htm)
- I can be reasonably sure that my physical ability level will not discourage potential employers from hiring me
Now that I’ve come to a stage in my life where I’ve completed my degree and I’m comfortable with my skill set, I feel that it’s time to look for a job in which I can utilise these skills, and make a step towards procuring a successful and fulfilling career in my field of interest. In fantasy land, everyone is employed based on their skills, experience, personality and work ethic. Skin colour, gender, background or disability isn’t a factor considered by the employer in fantasy land. Also, there are fairy floss trees and unicorns giving kittens free rides. Unfortunately, this is the real world and I have to be realistic about who will employ me. Even I know, if I was an employer and was presented with two candidates of equal worth and quality with regards to what the company wants, I would pick the able bodied applicant. It’s just easier. Desks don’t have to be altered, ramps don’t have to be installed, and special circumstances don’t have to be considered. So when it comes to employment, I know it’s going to be a tough road with lots of rejection and unfair judgement, but I’m going to have to suck it up and trudge on.
- I can choose to share my life with someone without it being a disadvantage to them
To be honest, this is an issue I still struggle with. I’m often uncomfortable when I see stories in the media about someone having a terrible accident, becoming disabled in some way, and then having their partner described as ‘inspirational’ for staying with them. Surely, if you loved someone enough, you wouldn’t think twice about caring for them in that situation. It makes me feel like if I was to be with anyone, helping me with my condition would be a burden to them because it’s such a big and inspirational task to help someone with a disability. I admit, I have grave doubts and worries about future partners and if I’ll be a burden and whether they’ll resent me, but I feel like these worries will decrease with age and experience.
Contrary to my previous jokes about you all being ableists, I didn’t write this to induce guilt or make you feel bad about complaining about your own lives (although I do have to bite my tongue when people try to sympathise with my situation by saying ‘I know how you feel, I broke my foot once.’). I just thought it was interesting to delve into privileges we don’t know we have. Furthermore, if this can stop just one person from treating those with disabilities in condescending or offensive ways, I feel like I’ve done my good deed for the day. Now I’m off to find those kitten riding unicorns…