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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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The Psychology Behind Anti-Vaxers

After studying Psychology for 3 years I am humbled by and extremely confused about the human brain and how it works. Humbled because of the amazing capabilities that have evolved over millions of years, and confused because it is simultaneously the driving force behind the strangest and most dangerous theories, connections, behaviours and actions in history.

One of the most dangerous movements of recent times is that of the anti-vaccination networks, specifically those that say vaccinations (specifically the MMR shot) cause autism. Now I know you’re all sick of the ‘debate’, and I’d be preaching to the choir if I was to tell you that it’s been scientifically debunked, so how about looking at the psychological processes behind this strange conspiracy theory.

Firstly, for those not familiar with the MMR vaccination controversy, in 1998, a theory emerged that the MMR vaccine caused autism. Specifically, the theory argued that the vaccine lingered in the gut, causing gastrointestinal problems which led to autism. This very small study was discredited and debunked. In fact, while the rate of MMR vaccinates has remained constant, the rate of autism diagnoses has continued to soar1. Along with there being no connection with the vaccine, autism is a largely genetic disease, as scientists have found that if one identical twin is diagnosed with autism, the other twin has about 90% chance of developing an autistic disorder2. Also, because this is science, and you’d expect as such from science, I’ve included references of the publications in which I gathered these facts from.

We pride ourselves on being logical and rational beings, above all other animals, capable of intelligent decisions and proud of our newly formed frontal cortexes. Yet this belief is constantly challenged by observing ourselves and others who continually make emotionally driven decisions, whether it’s by believing in a particular religion, or simply buying a chocolate bar because you ‘felt like it’. This is because our frontal cortex is intimately linked to our primary emotions (fear, anger, surprise, happiness, sadness) and these easily take over the function of the frontal cortex. So when your offspring’s health is at stake, what do you think wins out?

Here is a quote from one of the many anti-vaccination websites floating around:

‘The scientific proof of vaccine caused autism has been around for some time but kept from the public by the industry controlled media who trumpet the smokescreen of junk science epidemiology studies that have all been shredded numerous times. Plus, the thousands of parent anecdotes are ignored for obvious reasons’.

Before steam starts billowing out your ears from the sheer ridiculousness, understand that these anti-vaccinators share our brain structures and connections. So what could explain these unfounded beliefs?

A major factor is external explanatory attribution. If you’re unfortunate enough to have a child with a disability like autism, there is the natural inclination to blame something or someone other than yourself to deal with any guilt or frustration you may feel. Everyone does it. We all make explanatory attributions to understand the world and to seek reasons for particular events. In this case, the external blame is placed on vaccines, doctors, the media and ‘big pharma’. No-one wants to be held responsible for their child’s sickness or disease, and with autism, no parent should be. An interesting feature of this psychological theory is the difference in attributions we make about ourselves and others. We tend to blame environmental influences on our behaviour and circumstances (‘I smoke because my job stresses me’), whilst we blame other’s behaviour on their internal choices (‘He smokes because he’s got no will power’).

These attributions flow seamlessly into forming strong and emotional cognitive and confirmation biases. The complaint of parent’s anecdotes being ignored is firstly failing to know that anecdotes don’t count as scientific evidence, but most importantly, is a great example of confirmation bias. We all have opinions and ideas that we wish to be reinforced and supported by others. I think dressing up cats in human clothes is hilarious, and I feel justified and supported when I find other people or groups that share my interest. This confirmation bias is evident in the anti-vaccination groups who actively seek out information that supports their claims and beliefs and ignore those that don’t (or blame it on a conspiracy). This is why they place so much importance on anecdotes. They trust fellow parents/people who share their opinions and are puzzled and insulted when others don’t.

As well as valuing anecdotes from others that support their position, anti-vacs employ the use of the ‘availability heuristic’. This is a cognitive bias tactic that our brains use to help report the frequency of an event based on how easily an example to be brought to mind. If you surround yourself with people who are convinced that a vaccination gave their child autism, and information supporting this theory, then these will be the first examples that come to your mind. But what makes this a vicious cycle of unstoppable madness and dangerous ‘information’ is that cognitive and confirmation biases are so strong and ingrained in individuals, that bringing them to their attention will most likely be ineffective as they will be dismissed by those who hold anti-vaccination views.

Of course these psychological tendencies and theories can be applied to anything in life. They are the core components of large organisations such as religions and cults, and can filter down into the smallest of decisions and opinions in everyday life. So even though you may vehemently disagree with and campaign with every fibre of your being against their movement, it’s hard not to identify with them on a purely human and emotional level.

1 –  Exkorn, Karen Siff. 2005. The Autism Sourcebook: Everything You Need to Know about Diagnosis, Treatment, Coping, and Healing. New York, NY: Harper Collins.

2 –  Lathe, Richard. 2006. Autism, Brain, and Environment. Philadelphia, PA: Jessica Kingsley Publishers.

(This post was originally featured on the brilliant Martin Pribble’s website http://martinspribble.com/ Check him out!)