Comments Off on Wait, There’s Something Wrong With My ‘Mental’ Health Too?
Earlier this year, I revealed to the world at large that for the past nine years, I have been living with Multiple Sclerosis. I was heavily involved with Spoon Week and shared my story at several events. I then featured in the ANU Women’s Department’s intersectionality photo campaign. I shared the intersection of being a Woman of Colour with a disability. It was scary, I felt more exposed than ever, but all in all, it was a good experience.
2017 was also when my mental health got some attention for once. Upon seeing the call-out to write about the intersection of physical and mental health, I couldn’t help but embrace the opportunity.
I had been living in denial for a long time. Having been diagnosed with a ‘physical’ disease at such a young age, I kept telling myself that ‘there was no possible way that there could be anything wrong with my ‘mental’ health too.’ While I understood that others who suffered from poor mental health would benefit from the many ‘youth mental health’ campaigns going around, I personally paid them no attention. I believed that my mental health was nothing less than perfect. I only had my MS to worry about.
I had always been aware that I would become easily stressed. I never thought that there was anything wrong with it though, rather, that it was just an inherent part of life. Last year, however, one bout of panic regarding something so trivial consumed me for far too long. I had more important things, such as my Honours thesis, to concentrate on. After calling my sister in a fit of tears, we decided that something had to change.
In the summer holidays that followed, one of my close friends provided me with the necessary safe space to admit that I had a problem with panic and anxiety. Indeed, her own personal experience with anxiety meant that from the moment she met me, she could already tell that something wasn’t quite right. However, she never probed me about it; she knew that this realisation was one that I had to come to myself.
We were both relieved when I finally let it out in the open. For her, it was the go-ahead to put her mental health advocacy to work. I am forever grateful for her support.
So, what does my experience mean for the ‘intersection of physical and mental health’? Firstly, I shouldn’t have automatically discounted the possibility of having poor mental health just because my physical health wasn’t up to scratch. Secondly, the intersection is a real thing, and we should treat both types of ailments with the same amount of respect. Lastly, and to end on a more positive note, I now know that I can improve both my MS and anxiety by adopting a lifestyle of healthy eating, exercise, decent sleep and good company. Yes, that advice is generic, but that means anyone can take it, including you. So try it out and see what happens.
Comments Off on You Don’t Have Autism, I Would Know
TW: Self-Harm
Having an invisible disability isn’t something that you choose. It’s not something you can just switch off and on again dependent on what your day is like. It’s the same as having a disability that others can see, and in fact, sometimes it’s worse, because people don’t believe that you actually have something wrong.
You may be wondering what it is that I have, because when most people look at me, or even get to know me well, they often don’t realise that I am actually disabled. When I was thirteen I was diagnosed with Asperger’s Syndrome. Now, before you ask, yes it’s a real condition, yes I have been vaccinated, no my vaccinations did not cause it, and yes, I have a big family history of the disease. Now that we’ve cleared that up, let’s continue…
There are a lot of misconceptions out there about what it’s like to be on the Autism Spectrum, and before we continue, I’ll forgive you if your only experience of it has been from TV characters such as Sherlock, or Sheldon. I want to share my experience of having an invisible disability, and also debunk all the stereotypes and stigma around Autism Spectrum Disorders (ASD).
When I tell people that I am on the Autistic spectrum, one of the first things that they ask me is whether or not I’m really good at maths or science. Generally my answer goes along the lines of “not even close”, which is ‘apparently’ surprising. People tend to assume that having Asperger’s or Autism means that you are immediately an Einstein level genius when it comes to maths and science, but in my case, this isn’t the case at all, and I’ve had several people (including teachers) ask what’s wrong with me; which, frankly, I find really insulting.
For years after my diagnosis I wondered what WAS wrong with me. I couldn’t understand maths, and every time I tried to learn algebra it was like trying to drink water with a fork. I spent years convincing myself that I ‘loved maths’ and ‘wanted to be a scientist’ because that’s what Autistic people were supposed to want. It destroyed me, and has taken me years to come to terms with the fact that that I am just not cut out for them.
Whilst I didn’t understand maths or science, I did understand music, and in June of 2012 (year nine) I started learning to play the cello. Within six weeks I had finished the three beginner books that my teacher had asked me to buy. Within six months I had finished grade two AMEB (which, for the non-musos out there, is extremely quick if you’ve never played an instrument before). Within a year I was playing in intermediate orchestras as associate principal, and last year (three years into playing cello) I was playing for the Queensland Conservatorium of Music’s’ Youth Symphony orchestra. I ended up going on tour as principal cellist with this orchestra and by the end of last year I was able to pick up LMUS graded repertoire and play it within a week.
Autism for me, it would seem, is not mathematically or science based, but centred on music. Autism has given me an innate understanding of music, and an understanding of how sound fits together so innate that it has been described as insane (in a good way). My final music assignment for year twelve, a music composition, was requested to be played by a symphony orchestra and was given feedback, which changed my life.
It hasn’t all been fun and games for me though. Throughout primary and secondary school I was always treated differently, and insults ranged from “weird”, to “freakish”, to at one point being told that I was not worth the dirt on someone’s shoes. It didn’t help that I didn’t actually have a diagnosis for the majority of my schooling, with teachers always viewing me as the ‘problem-child’ who couldn’t pay attention in class, was too smart for their own good, and, by their own admission ‘refused to get along with other children’. In actual fact, the other children refused to associate with me, believe me, I tried everything.
There’s a lot of stigma that goes with having Autism, and I’ve had some pretty horrible experiences as a student and with other people. I’ve had teachers deliberately separate and ban me from talking to my only friend so that person would not become unpopular, and I’ve had classmates and teachers deliberately engage in mindgames with me – apparently they were funny because I take everything literally – which left me panicking and unable to function for three weeks straight. I have been driven to the point, where at one time, I was self-harming in the middle of class, in full view of teachers and students, while no one talked to me or did anything to stop it. I had teachers tell me I was worthless, would never amount to anything, would never be a good student and was pretty much going to be a failure for the rest of my life – I proved them wrong though when I got accepted into Law in my home state and turned it down to come to ANU and study International Relations.
However, the worst discrimination (and I don’t use that term lightly) that I have experienced, and where the title of this piece comes from, happened in November of 2014. I had moved schools and states, and finally everything seemed like it was starting to pick up for me. Nobody at my new school knew that I was autistic (aside from the teachers, who didn’t care or make a fuss, which was how I wanted it). I had finally gotten up the courage to tell my closest friends that I was an Aspie (the colloquial term for someone with Asperger’s) and I hoped that it would go well, for my sake at least. It didn’t. Her exact response when I said that I had Asperger’s was (and I’m quoting directly); “You don’t have Asperger’s, I would know, I’ve done a two week online psychology course.” I was furious, and expressed this to her, but she continued along the lines of “you can’t go around making up stuff for attention, you’re not Autistic so just stop, it’s embarrassing.” I ended the conversation by threatening to present the fifty-page report detailing the fact that I am, and also ended the friendship at the same time.
If you were wondering why I was remaining anonymous at the beginning of this article, I hope you can now understand why I have chosen not to reveal my name. I don’t want my identity to take away from the gravity of how people with invisible disabilities (particularly ASD) are treated. I also wanted you to realise that I could be anyone among you. My disability is invisible, but that doesn’t mean I am.
Comments Off on A Dog With A Yellow Vest Helps Keep The Blues Away
It’s still a challenge to tell friends, family, and others that you may have a mental health issue, despite all the prominent and positive campaigns to raise awareness. I’ve personally found that having a dog with you every day that has a bright yellow jacket with the words “Service Dog” in bold print tends to telegraph this to the whole world. Am I bothered about this? No I am not.
This story starts in July 2012 when, while undertaking archaeological fieldwork for my PhD in Arnhem Land, Northern Territory, I fell about 8-10 metres down a sandstone cliff. After that I endured long periods of time in hospital, numerous surgeries, and was confined to an electric wheelchair for 6 months. I spent the majority of that year isolated, at home, with the support of some good friends and my wife, but with infrequent contact with the outside world.
Then there was the arrival of a Swedish Vallhund puppy named Elvi in the weeks after my accident. Elvi spent her first year as my close companion during those long months of recovery. When it was time to try to return to complete my PhD, I found the thought insurmountable. I was unable to walk properly and suffered from the loss of the full use of my left shoulder while being in high levels of distressing chronic pain. This all combined to create a perfect storm of debilitating depression, struggles with financial difficulties, thoughts of how I could possibly finish my degree, and the question of if I could ever be an archaeologist again.
At that time I attended some workshops on how to deal with chronic pain and one of the methods discussed was distraction, and it was here that I learnt that psychiatric assistance service dogs fulfil this role, amongst others, for their handlers. This was the moment that the penny dropped and I thought I should train Elvi to be a service dog. The Division of Student Life Access and Inclusion and my School helped with the requirements to allow Elvi onto campus, and she once she was registered with MindDog, her training and work began. It was to become an extremely important partnership that helped with my recovery and to maintain my ability to weather the chronic pain during long days at university.
I’ve found that there is growing literature demonstrating the positive impacts of psychiatric service dogs; from war veterans suffering from post-traumatic stress disorder, to others that live with a myriad of mental health disorders. Elvi is a key part of my strategy to maintain the wellbeing of my mental and physical health, along with the many other medical and allied health support mechanisms that I’ve needed to develop over the past 3 years. Taking on a psychiatric service dog requires commitment and perseverance and it can be challenging. They love you unconditionally, and that needs to be returned with the same passion, a lot of training, and care. I for one can say that the benefit is enormous. She graduated with me in 2015, stole the show on stage, and has become a regular and a favourite at the Coombs Building where she still comes to work with me, in the office, the lab, and even when I tutored and lectured as my former students will know.
For further information about MindDog please visit: http://minddog.org.au/
Comments Off on If You Fail To Plan, You Plan To Fail
Spoon Week is about promoting understanding of the experiences of people with disabilities, and starting conversations with the wider community about how society perceives and responds to disability. During this Spoon Week, we’re being asked to listen, learn, and take action.
Take action on what?
This may not be obvious to the average student, but there are a number of obstacles for students with disabilities at the ANU. Even when fantastic services such as Access & Inclusion, the Counselling Centre, or Batyr do their jobs to the best of their ability, they may be hampered by a lack of coherent policy or poor resourcing from the university. There are a number of unique problems that are specific to these issues, but what is common is a lack of planning on the part of the university.
It’s a refrain that your lecturer or tutor has probably said before: ‘If you fail to plan, you plan to fail.’ I can’t claim to be a particularly excellent planner, nor would most students, but I think even the most procrastinatory of us would recognise that planning is a good thing to do. It might shock you then that for the last four years, the ANU has failed to create a Disability Action Plan (DAP).
A Disability Action Plan is a document written up by an institution (like ANU) that outlines how it plans to eliminate discrimination against people with disability. It’s a physical commitment to equality, and a practical measure that outlines what improvements can be made, timelines for those improvements, as well as who’s responsible.
Make no mistake: when students are put through the wringer to get reasonable adjustments, or they’re unable to see a counsellor in a timely manner, it has a real effect on their education that’s discriminatory.
Whilst parts of the university are trying their best to make the university experience more accessible, it doesn’t make up for the fact that there’s very little in the way of long term planning and coordination across the university.
Out of all the Group of Eight universities – that is, Australia’s top research universities – ANU is the only one that does not have a DAP. This is not because other universities are better than we are, or because they possess resources we do not have. Prior to the last DAP’s expiry, ANU wrote and actioned four consecutive DAPs. We are just as capable of writing one, what is lacking is the will to do so.
Students with disability deserve a university that takes action on discrimination, not one that just talks about equity and accessibility. On Monday, May 2 we’re launching our petition to ask to the university to take action, and create a Disability Action Plan. If you believe that university should be an accessible experience for everyone, please sign it and help us spread the world.
Tom Kesina is the ANUSA Disabilities Officer, and helps run the ANU Disabilities Student Association. For more information, here
I have Borderline Personality Disorder (BPD); it’s not my only diagnosis, but I’ve come to associate with it the most. My diagnosis with BPD came half way through my first semester at ANU. I’d been suffering with my symptoms and didn’t know what to do – some days I’d be consumed by my paranoia, or my anger. I was often not in a good state. When I was diagnosed I wasn’t told by my Psychiatrist what it even meant, and when I brought my diagnosis to my Psychologist I was told that I didn’t seem like someone with Borderline – not that I had been given a reference point.
I had to do my own research, and research was hard to find. Any articles I could find were about how to avoid girls like me, some people even labelled those with BPD as ‘demon spawn’. I came to terms with my diagnosis after eventually reading about what it’s actually like to live with BPD.
What I learnt from the doctors I spoke to was that BPD was a dirty diagnosis, and no doctor wanted to ‘label’ their patient with it.
I don’t see it as that, though I can’t say I never think of it that way. My diagnosis makes things very hard for me. I struggle with day to day things, from doing my own washing to feeding myself. I’m not always this bad, but I can be. Sometimes I don’t sleep because I’m so consumed with stress and depression over things that may not even happen. When I become stressed I often begin to hear things; this scared me a lot the first time, and when it gets really bad I’m terrified. My hallucinations cause migraines and my migraines prevent me from studying…which stresses me out and so on and so forth. I try to keep my stress levels low, but BPD doesn’t necessarily allow me to do that.
Making friends is really hard for me as I often tell too many personal details too fast. Sometimes I worry that I look like I’m attention seeking – I’m not, I just get so stressed in social interactions that I can’t stop myself from bringing up whatever upsetting thing that I think of. I come away from those interactions feeling awful and guilty, then comes the inevitable two page apology note that I send the person, and if I haven’t scared them off by then, I’m lucky.
I have been lucky in that some people look past my first impression, but I know that I have scared people off too. I constantly feel dependent and useless, which means I over analyse everything and often come to the assumption that someone hates me just because they ‘saw’ my message on Facebook and haven’t responded. I went through my first year of ANU not really having any friends; there were people I knew, half-started friendships, and people I was friendly towards, but not many friends. ANU became a means to an end for me and I was okay with that, but it would be better if BPD didn’t interrupt me so often though.
Week 10 of ANU this year is Spoon Week, which it centres around the concept of Spoon Theory, essentially a way to explain that those with a disability have a reduced amount of energy or spoons to spend in their day.
I am so grateful that Spoon Theory exists; it’s such a simple way to explain to others that I sometimes don’t have enough energy to get through my day, and that I have to plan out ways to get things done. I’m not great at the planning side of things, but sometimes it’s easier to describe it this way.
Of course it means I have to explain that I have a disability, which I wish I could say is easy. It’s not. Sometimes people just understand and move on, other times there are the questions that I’m not okay answering because, sometimes I don’t want to explain why I have a mental illness.
Then there is the stigma. I considered myself lucky for a long time that I scarcely encountered stigma, but the truth is that I do. I went to the doctor the other day because of a stomach bug, that’s it. Upon viewing my medical history my doctor asked, “What is Borderline Personality Disorder, I’ve never heard of that one before?” What is it? It’s not what most people think of, it’s not the ‘crazy’ ex-girlfriend of your brothers misogynistic best friend, it’s not a joke you can drop when someone is behaving in a way you don’t expect, it’s not split personality disorder – it is a disability and it affects around 2% of the population at any given time. Me included.
School is hard for me: I am often very low on spoons and struggle through the week to reach the weekend that I tell myself will be easier. Sometimes I’m so low on spoons that I don’t shower for days, I don’t eat properly, and I don’t finish my assignments on time.
I’m often ashamed of how I feel because BPD makes me feel things that I don’t know how to cope with. BPD sometimes feels like a death sentence but I’m comforted by the fact that I can do things every day to get through it. I save spoons by going to bed early some days so that I can spend them the next day. I take medication, I seek help when I need it, I hug my cat, and I try to stay healthy. But I also have to make sure I don’t allow myself to think that I’m ‘normal’ in the sense that I can take on whatever I want.
For me, my ambition is only enhanced by the anxiety that I’m not trying hard enough. So I’ve reasoned to keep myself in check. To work on building my support network backup, to get grades that I’m proud of even if they’re not perfect. I have to allow myself to be low on spoons so I’m not in debt.
I have to embrace my disability and the wonderful community that comes with that. And most importantly I have to be okay with not being okay sometimes.
Comments Off on If You’re A Resident of The Following Colleges, You May Want to Go Home
How many of you Woroni readers can tell the difference between someone having a psychotic episode and someone being in a dissociative state?
Reading this you may ask yourself why you should have to know. Sadly, it is because while in 2015, the former could get you terminated from an ANU hall and the latter had limited repercussions, the ANU administration’s new 2016 policy allows them to effectively wash their hands of any student with prolonged mental health conditions.
It is a policy vaguer and thus more terrifying for those of you who still reside in college. If you reside in Toad, Fenner, Burton & Garran, Ursula or Bruce Halls your place as a student is precarious. I believe that in response to the lack of accommodation on campus that administration has purposefully endorsed views and a policy that makes it okay to discriminate against mentally ill university students, with procedures that can ultimately hurt those who could be considered vulnerable.
What has triggered my investigation into this policy is instead from the recent death of one of my friends. I feel deeply and terribly for this student’s family and other friends. While the situation is genuinely horrendous it has led me to consider how policy can largely affect how one copes with mental illness, and how policies such as the new ones, I have discovered at the residential colleges, that have been put in place will only contribute to the psychological distress of others.
Students tell the administration about their friends out of concern, but how can an administrative judge this to be a fair representation? One problem, for example, derives from the fact that I suspect the majority of people cannot tell the difference between psychosis and disassociation – and this is before noting that aspects such as suicidal ideation are common amongst those who aren’t considered mentally ill. Ultimately, this policy ensures that students will keep quiet about their problems and issues, and misinformation can be easily disseminated by those who care about the student in distress the most, their friends.
A lot of these policies take agency away from the student in question. Whilst ANU Counselling seems like a good idea, the service is not equipped for serious matters such as these. Counsellors can be assigned to you, so you may get one that only works on Fridays for example; I have found that if you have a crises any other day the service actively limits your ability to see someone. Rather they prefer you to be attended by one counsellor, this makes sense on the basis that one person should be in charge of your care. Being sent to the Counselling Service often lends this idea that mentally ill people cannot be in charge of their own care. I think in conjunction with this service colleges should be provided with lists of mental health specialists who bulk-bill, and other groups in the ACT people can attend beyond using emergency services such as the Crisis Assessment and Treatment Team.
Finally through some vague measurement that is yet to be revealed in this handbook if your disability possesses a ‘significant burden’ – of which the parameters have yet to be explained – on the hall they have the right to terminate your occupancy agreement. If your psychological distress exists for an extended period of time, you may be subjected to this termination.
The first step of the termination is to alert how your illness impacts the other residents and the operation of the hall. This seems to be a little too late to alert someone about the impact of their illness on others, and honestly, it will end terribly, with students becoming resentful of one another, and being unable to communicate. If another student informs the administration that your illness is impacting them out of concern for them and yourself, the administration does not have to relay this information to you until it is too late. Secondly, the Hall discussing your situation with others makes me wonder if you would be allowed to participate in any of these discussions.
A whole group of people, some of which you have never met, will get to decide whether the Hall can accommodate you. I can see many problematic things occurring. How much weight would a medical expert you are seeing hold over the Dean of Students for example? What evidence should you need to submit? Why is agency taken away from the student? Another thing I could see being a problem would be if you had a highly stigmatising condition, a condition that when mentioned makes everyone think of Glenn Close’s character in Fatal Attraction (for those who do not know, the female stalker who murders a rabbit, kidnaps a child and almost kills Michael Douglas’ character) because it is the only example of your condition the media provides. Revealing such information to that many people, in a situation beyond your control, would be extremely terrifying.
Ultimately, if the ANU colleges do not review these policies I seriously question the safety of hundreds of residents on campus this year.
So there I was, in a French Chateau on a blissful summers day, feeling thoroughly content having just had a taster of some fortified French wine, when suddenly, my head stopped. I stumbled outside and fell against a wall, an ambulance was called, and from that moment on, my life was very suddenly and unpredictably turned upside down.
It’s been almost 2 years since that day. I’m now living with an unimaginable range of issues that I could have neither predicted or prepared for. The most intrusive of these are my physical symptoms; in an instant I was reduced from a strong, young Atlas mountain trekker, to someone that could barely lift their dragging feet from the ground, for step after exhausting step, to make it 30m before falling in a tangle of exhausted ‘ragdoll’ limbs. Together with this complete and utter exhaustion came a myriad of other symptoms – shaking, an inability to think, stumbling over words, an unrelenting pressure in my head, an uncontrollable eye flicker. The unexpected outcome was my healthy appearance, aptly described by my neurologist who said, “You look a million dollars”. Excellent! Isn’t it a shame I feel like an extra from the walking dead.
When you couple this ‘million dollar look’ with intensely disabling symptoms it leads to some challenging situations. For example, invalid cap parking spot + the look, just doesn’t add up for the concerned passer by who believes they are defending a disabled car parking spot from abuse by a seemingly healthy soul.
Yet, there is a population of invisibly disabled individuals who are entitled to, and rely on the use of these very amenities, who need consideration. For those that suffer from invisible illnesses, there comes the added burden of anxiety when using disability services, with the prospect of dirty looks from passers by, or worse still, having to defend their use of those services to well meaning, but judgemental and ill-informed guardians of disability facilities.
I am not saying that the fact that I look ‘well’ is inherently bad, in fact, it can be really useful when I feel like playing make-belief, and briefly escape to a life in which I’m your average Uni student, where the reason I feel like death is because I partied too hard at downstairs Moose, am now attempting to finish that essay that’s due in 2 hours and mostly survive on a diet of mi-goreng, coffee and late-night chicken gourmet.
I myself am lucky enough to have a brilliant support network of friends and family, who are extremely understanding, and go out of their way to accommodate to me and my condition. Without them, I would be immeasurably worse off.
However, even with them, the subtleties that come with living with an invisible illness are noticeable. Since it’s not immediately obvious when my energy is waning whilst socialising, I may have to ask friends to leave early even when I’m having a great time. Conversely, if I attempt to push through and over socialise, I pay the consequences with acute amplification of my symptoms and extreme ‘rag doll’ effects. For me, one of the most extreme examples of this was when one of my friends legitimately FORGOT that I was ill and thought it would be a great idea to pick me up and spin me round. This was (unsurprisingly) too much for my delicate balance centre to handle and resulted in a complete collapse, a couple of days recovery, and a very, very apologetic friend.
The problem with an invisible disability is its credibility in the eyes of others because of an apparent ‘wellness’ factor, or, when an illness and its circumstances aren’t taken seriously due to judgements being based on outward appearances. This is a phenomenon that is commonly experienced by members the chronically ill community that don’t have symptoms that are outwardly apparent, or those of us who suffer with ‘invisible illness’ – my experience has alerted me to the plight of many of the invisibly chronically ill, whose friends and family are not so understanding. It seems sadly common for friends to feel like they’re being ignored or let down when their sick friend cancels plans. Alternatively, they may be unwilling to adjust plans to more suitable, accessible activities (Netflix in bed is a favourite of mine), which may continue to the extent of even downright doubting the illness of their loved one, which is confronting and damaging to the sufferer.
Despite all these social complications, the most severe and harmful impact of not being taken seriously would have to be, when that judgement and scepticism comes from the medical community. During my diagnostic period of around 3 months, I was faced with a number of doctors who decided upon their initial examination that my symptoms were psychosomatic. It was only my outward symptoms, examined lightly, that provided the basis for my initial diagnosis, which is significant given that many of my most debilitating symptoms aren’t the visible ones: brain fog and extreme fatigue.
I have severe form of Dysautonomia, and although many people who have a less extreme or different form of Dysautonomia or POTS do experience extreme fatigue and brain fog, my absence of these visible symptoms meant doctors didn’t take my symptoms seriously.
Bias against those without visible symptoms is extremely problematic. I can’t imagine having to live with these symptoms without medical back up and treatment. However, these occurrences are unfortunately and also prolific. A recent UK survey of POTS sufferers discovered that patients “…waited a mean of almost four years from presentation to obtain their diagnosis”, and that in the interim “psychiatric mislabelling was common”. These findings resonated strongly with my experience and I find it terrifying that invisible symptoms not being taken seriously is so widely occurring, given the effects of incorrect diagnosis are so considerable. Incorrect diagnosis leads to patients being unable to access the treatment and management education that they need, which undoubtedly has profoundly negative effects on a patient’s management and recovery.
This has been specific to my illness and my experience, but the principle can apply to a huge range of chronic illnesses; Crones Disease, Multiple Sclerosis and Chronic Fatigue/ME just to name a few.
There are a huge range of illnesses out there that all affect people in different ways, through both various levels of disability, different symptoms and differing levels of visibility. All chronic illnesses have their own particularly nasty negatives, and this shouldn’t lead to a competition of “who is the sickest”.
For those of us who are already struggling with our health, being disregarded or judged because we aren’t displaying physical signs of disability is a burden we do not deserve to bear. Ultimately, more thought needs to be given to invisible disabilities by the passer by, the medics, and the general population. Perhaps a little education about the severity and scope of chronic illnesses, combined with a willingness to listen to, and accept with empathy, the experiences of the chronically ill, will lead to a sense of awareness that will support those with invisible illnesses in our daily lives, and perhaps for a moment, make us feel like a million dollars.
My whole life I thought I was dumb, then, two months before my 21st birthday, I was diagnosed with dyslexia. Happy birthday to me! It was probably one of the most confusing times of my life, not only because spelling dyslexia in itself was a massive challenge, but because of how long it took to come to terms with it.
I had never been a good speller, and almost failed Grade 4 because I didn’t know my timetables. I never got my pen licence, and to this day I still spell ‘because’ by saying “big elephants amble under small elephants”. I guess which ‘their’, ‘there’ or ‘they’re’ to use every time, and have no idea when you are actually meant to use commas. I have lost marks on every assignment I have ever done for spelling and grammar, and have a massive fear of libraries because the Dewey Decimal System scares me. I have to Google most hard words – for example, I didn’t know how to refer to the Dewey Decimal System, so I searched “the book order in libraries duodecimal” on Google, and found the term from there. I went on exchange to an American international school in India in Year 11 and was almost put in the English as a second language class because the struggle was real. I got into ANU feeling like an absolute fraud and somehow got through to second year university without anyone even questioning it.
Sure, I had teachers tell me that my spelling was wrong, but that was normally followed by, “If you stopped talking in class I’m sure you would be fine.” I would spend days proof reading assignments, only to get them back with red writing all over them and a comment along the line of, “this would have been great if you had proof read.” When I started Uni I would spend hours doing a single reading and not really getting it, but thought that was normal. I managed by avoiding doing any classes that had exams, and made sure to drop any classes that had lots of dates and names involved. Everyone I knew was aware I was a bad speller so it wasn’t really a big deal, at least until I started to venture into the big wide world of Canberra and it become more and more of an issue, and I become more and more self conscious. I always joked about being dumb, but the thought of people actually knowing I was dumb was daunting.
I don’t even really remember why now, but one night I Googled ‘dyslexia’ and it was like reading about my life, except for the fact that most people get diagnosed when they are kids. Months later, I mentioned it to my Dad, who kind of laughed about it and mentioned that he might have been diagnosed with dyslexia as a kid but he couldn’t really remember. DENNIS, DYSLEXIA IS HEREDITARY YOU DUMB DUMB. Anyway, it turns out I was dyslexic too.
To begin with I thought it was hilarious. I struggled to find an adult dyslexic specialist that could officially diagnose me, so I had to go to kids psychologist, which come on, is pretty funny. I also got given a book called “dyslexia; a gift” – firstly, who gives a book to dyslexic person, and secondly, dyslexia has got to be the worst gift ever.
So you can see how it was kind of funny to begin with. Then I got really mad. What sort of school doesn’t pick up on a kid having a learning difficulty? I had people that didn’t really believe me because I had gotten so far with my education. Mostly I was angry that nobody could help me. I did not want to have a disability.
Then I got really sad. I had spent all that time trying to hide that I was dumb just for it to be proven in an IQ test. I was so tired of trying and really just felt like giving up. I didn’t want it to be a big deal, but it was.
I now know that I am actually dyslexic, and now have to figure out what it really means. I’ve learnt that my brain has to work a lot harder than a normal person’s just to be able to read words from a sheet of paper. I found out my love of the colour yellow has to do with how my brain works.
Supposedly I am meant to be good at problem solving and big picture thinking. Most importantly, I’ve learnt that people don’t think I’m dumb just because I’m dyslexic. My friends have been amazingly supportive, classmates have helped me, and teachers have gone out of their way to give me assistance.
Comments Off on Not That There’s Anything Wrong With That
It’s important to note from the onset that this happens to a very wide variety of people who have vastly different life experiences and identities. I am not speaking for anyone else, this just happens to be my personal experience.
I identify as male. I am exclusively attracted to women. For the past several years, a large percentage of the people I know have assumed that I’m gay.
I’ve been told a lot of the reasons why people assume that I must want to have sex with men. I’ve been told that it’s because at cocktail events, I’ll often wear a bow tie instead of a normal tie, or colourful socks instead of dark ones. I’ve been told that it’s because I’m skinny and not particularly sporty. I’ve even been told that it’s just inherent in the way I hold myself and the way I talk to people. These, and many more reasons I’ve been given, make it pretty clear to me that people are assuming that I’m attracted to men because I don’t have a lot of typically masculine attributes.
Assuming someone’s sexuality because of the way they act, or the way they dress, or whether they took drama in high school, is always going to be futile because there genuinely is no connection between those things. Additionally though, those kinds of assumptions and the gossip that surrounds them is incredibly damaging. It creates a cloud of self-doubt behind every action that you take and it makes you second-guess the clothes you put on in the morning or the drinks you order at a bar because you become worried about what other people will associate your actions with. Someone’s sexuality should never be a matter of concern for anyone but themselves.
There are also a few problems that stem from implying a connection between masculinity and heterosexuality. The first, and most obvious, is that it sends the message that if I show traditionally masculine traits, I must be straight, and if I don’t, I must be gay. I’m not allowed to be straight and effeminate, and likewise, people aren’t allowed to be gay and masculine. Obviously, this is bullshit.
Things like sexuality and gender do exist on a spectrum, and it’s important for people to realise that it’s impossible to determine the way that someone identifies based on some external attribute about them.
Furthermore, as someone who has this happen to them all the time, these assumptions only make me question my identity more, feel more uncomfortable about who I am and feel like I’m doing something wrong or not behaving in the way that I should. I’m surprised that it has gotten to a point where I actually feel uncomfortable about the fact that I’m straight. The cumulative effect of these assumptions and the consistent insistence that I must be gay is that even though I know that I am not attracted to men, I feel like I’m somehow doing something wrong or not behaving correctly. This makes me feel incredibly uncomfortable with who I am. For example, I’m really, really uncomfortable with dancing. Only a few weeks ago, I was told by someone that that must be because I’m repressing something (how very subtle). But it’s not because I’m repressing the fact that I’m secretly gay. It’s because I’m not comfortable with who I am in a way that has nothing to do with my sexuality, and having people say things like that only makes me more uncomfortable in my own skin, and more questioning of my actions and the way people perceive them.
The second problem is that it makes me feel even more insecure about the fact that I’m not particularly masculine. The nature of social norms around masculinity is that men feel pressured into acting as masculine as possible. I am well aware of the fact that notions of masculinity are baseless and stupid – yet I still can’t help but wish that I was more masculine. That’s the bizarre paradox of masculinity: I wholly believe that I don’t need to act in a way that is typically masculine, but I still can’t help but want to. It affects me in strange ways, too. For example, I’ve wanted to cry countless times since I hit puberty, but I’m nearly always physically unable to. And that means that I struggle to express and let out my sadness, it means that it’s harder for me to deal with it, and it pushes me towards either just wallowing in the fact that I feel shitty, or taking it out on other people. I feel trapped by masculinity, because although I’m fully aware of the fact that I should be able to cry, there’s still a part of me that won’t allow it. When the message that you send is that for me to be straight I have to be masculine, you force me to try and identify with those masculine attributes. You push me towards trying to be someone that I’m not, and trying to engage with a form of identity that I’ve been trying my hardest to escape from.
Even further to that, people’s continuous insistence that I must be gay makes me want to change my behaviour to stop them. Even after I explain that I’m just not attracted to men, or that I have a girlfriend, the same people tend to immediately brush what I say aside, in a, “You say that, but we both know it’s not true,” kind of way. One of the worst effects of this is that I do feel a pressure to change the way I act to somehow prove the fact that I’m attracted to women. When people tell me that I must be gay because in some of my Facebook profile pictures I’m posing with another guy, it means that I’m less comfortable forming close friendships with men. I’m less comfortable hugging men. I can guarantee right now that my next profile picture will be a picture of me, alone. But it really shouldn’t have to be.
The reason this article has been published anonymously is not because I don’t want to be associated with it or are uncomfortable with what I’ve divulged. It’s because hopefully, in not knowing who wrote this, maybe you’ll think about whether you’ve made similar assumptions about people and how it might be affecting them. Assigning any value or identity to an attribute, or making assumptions about anyone’s identity in general, isn’t just stupid. It hurts people.