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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.
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
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.
Amazing Science Jewellery
I only ever advertise something if I love it. Consider me Oprah and I’m doing ‘My Favourite Things’.
Aroha Silhouettes (http://arohasilhouettes.com/oxytocin-necklace.html) is a fantastic online store which sells handmade jewellery. However, this jewellery is extra special, as it’s modelled on molecules such as dopamine, seretonin, coacaine, and my favourite (and the necklace I just purchased and linked to) oxytocin.
Tania makes the jewellery, and I had a bit of trouble with postage concerns and she answered my email right away and cleared it all up for me. She couldn’t be more helpful.
So I’m telling you to buy this jewellery. And guys, I know you might be thinking this doesn’t apply to you, but I can promise you, if you have a nerdy science loving girlfriend, one of these necklaces or earring sets will put you in the good books FOREVER.
Do it.
My article on atheism in The Age
Thanks to the wonderful Australian Atheist Foundation, my article has been picked up by The Age newspaper. I wrote about how my Muscular Dystrophy changed my perspective on life, religion and responsibility.
Enjoy!
It’s your responsibility to get the shot
This is an issue very close to my usually cold and concrete heart as it involves the lives and deaths of innocents from completely preventable diseases and infections. With the recent explosion of anti-vaxers circling internet forums, television, and communities, I felt helpless to stop them or challenge their disastrous messages. I thought, what can I do, as an individual, to make their toxic message just a little bit less effective?
I’m going to help strengthen herd immunity, and urge others to do the same. If we can’t silence the anti-vaxer’s dangerous vocal arguments, we can silently protect those they affect by doing our part biologically.
I was worried that this post might conjure images of me sitting on a very high horse dictating what you should do and how great I am for suggesting you do so. If that does come to mind, what colour is the horse? If this post reminds one person to get their booster shots, then I consider that a large victory.
A lot of anti-vaxers recoil in horror at the mention of ‘herd immunity’ as if they’re being referred to as mindless sheep being herded into the doctor’s office in an orderly assembly line (if only that were the case…). Herd immunity is the immunity of a large proportion of the members of society and the consequent lessening of the likelihood of an affected individual coming into contact with a susceptible individual. These susceptible individuals are usually newborn babies who are too young and vulnerable to receive their vaccinations for various infections such as whooping cough (pertussis) and the measles. So basically, the logic of herd immunity dictates that the more individuals who are vaccinated, the chances that a chain of disease transmission will be interrupted are very high, resulting in self-contained, small outbreaks that will die out quickly.
What many adults do not know, and what I’m endeavouring to spread the word about, is that you need booster shots. I was surprised to learn that the vaccinations I received as a young child are not permanent (and this is why I’m not a doctor), and your body needs ‘reminding’ with regards to fighting these infections. Vaccinations for adults are also highly stressed for new parents, or people who are in contact with young and vulnerable babies and children. What actually spurred me on to getting my boosters was the fact that my neighbour is pregnant and I will no doubt be interacting with, holding, kissing, and sucking the youth out of this newborn baby. I feel like it’s my responsibility to be vaccinated before handling this new innocent baby. I am the adult, and for visits where I am responsible for the baby’s health (not dropping him, holding him correctly, basically keeping him alive), I should be vaccinated against any infections that he may catch.
The same logic applies to older children who I am in contact with as part of my work, study or volunteering. I do not know whether these children have been vaccinated. If I can be one more person that they interact with who CANNOT infect them, I see this as only a positive result of booster vaccinations. Their parents have obviously decided against vaccinating their children (something I vehemently disagree with, and with the help of ‘Stop the AVN’ am trying to change), and I can’t change that, but I can help herd immunity by protecting the ‘innocents’ in society. These innocent new born babies include Dana McCaffery who at 4 weeks old died after being exposed to whooping cough after her mother took her outside in a notoriously anti-vax area of New South Wales here in Australia. My heart breaks every time I hear this story, both for the painful death of this beautiful little baby and for the guilt the family feels for not knowing about the blatant apathy their community had with regards to immunisation. Here is her story:
http://danamccaffery.com/openletter.html
Although verbal back and forths with the anti-vax groups may be falling on deaf ears, you can do your part to fight their dangerous messages. Do exactly what they’re campaigning against. Get vaccinated. Next time you go to your GP, discuss possible booster shots you’re eligible, swallow some concrete, and get the shot. Then, when you’ve got your little bandaid and lollipop for be such a good patient, tell anyone who will listen about what you did and why. You never know whose life you might be saving in the future.
Here is some information for Australian residents about vaccination programs: http://www.myvaccination.com.au/
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!)
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