Comments Off on Do International Students Need Integration?
閱讀中文版請看 ‘國際學生需要被融合嗎？’
Having a constructive discourse on minority representation is hard. That’s why I find Kai Clark’s article “There is No Such Thing as an ‘International’ Student” particularly refreshing. The article offers a number of valuable insights and sincere suggestions. It calls for the increased representation of international students. It speaks against pigeonholing different groups and calls out xenophobia. As will become clear, I disagree with many things in this piece; but there are also many, many more that I wholeheartedly embrace.
At the risk of stating the obvious, I should preface my discussion with one more point. Proposals for change are often subject to remarkably harsh scrutiny. Legitimate concern aside, what underlines such (at times enthusiastic) scrutiny is often a desire to preserve the status quo. Think, for example, about the fact that those who oppose affirmative action on the grounds that it’s not the most effective way to address injustice are unlikely to be proponents of other progressive policies either. Think, also, about the fact that those who lament unionisation on the grounds that it hurts workers are probably not going to vote for mass redistribution in any event. Point being, for all that I will say later, Clark’s article makes an invaluable contribution to the ongoing discussion on minority representation.
So much for the set-up. Clark’s main argument in the piece is that “international students” are not a homogenous group, and hence “there is no such thing as an international student”. My worry, though, is that Clark runs the risk of replacing one form of over-generalisation with another. Clark presents, unwittingly I believe, a picture of international students as many groups with diverse interests that are nevertheless internally homogenous.
We are told that, “they see themselves as who they are: a citizen of their home country.” We are told that, “they are more likely to relate more with others from their country than with other overseas students.” We are told that, “[this] is why cultural and country-specific clubs are so popular… as they create a place for ambitious overseas students to cut one’s teeth in student leadership.” These descriptive claims are worrying not only because they either are widely inaccurate or rely excessively on stereotypes. They also carry off-putting normative connotations. We are told, later in the piece, that the “institutional change” we need is simply that “student leaders” and residential staff understand the “legal, cultural, and socioeconomic barriers” international students face. Informed by the above-mentioned conception of international students, one can’t help but wonder what kind of understanding such institutional change will produce.
To be fair, Clark does mention that “even… simple descriptions [like Mainland Chinese, Taiwanese, Hong Kong and Singapore] hide the complexities and contradictions of these places”. I don’t know, however, whether “ethnically homogenous China with its ‘new rich’ and rising middle class” — referenced by Clark in the same paragraph — obscures more than just the “complexities and contradictions” of a place.
Of course, at the level of university and residential policies, some degree of generalisation is unavoidable. The question rather is whether generalisation is unfairly and disproportionately directed at some particular groups.
In fact, as an international student myself, I find it slightly puzzling that, for an article published in the university newspaper, people like me are referred to almost exclusively as “they”. Perhaps it’s just a matter of the proper use of grammar; I am not sure. I do, however, struggle to find any shred of agency for people like me in this picture. We seem merely to be passive recipients of “inclusion” and “support”— if only we could be integrated; if only “student leaders” and staff could help us.
Now, how to understand the agency of disadvantaged groups is a very general problem for historians, sociologists and philosophers. For example, we do not want to theorise indigenous peoples solely through the lens of victimhood, nor should we only sing a feel-good anthem about their triumphant resistance. The point is not that Clark doesn’t resolve this intricate issue. Rather, it is simply very curious why international students are singled out. There are presumably a great many students who have difficulties adjusting themselves to the new environment. A great many, perhaps, “want to be included into the community but are struggling”.
Even some of the seemly specific problems identified by Clark are hardly unique to international students. We are told that, “a Chinese dumpling making event, for example, does not necessarily appeal to South Asian students as it would to East Asian students.” Clark then says, “this is exacerbated when you continue to see events that continue to borrow upon one cultural region over another”. I am again quite puzzled by this. Isn’t this just a general problem of how to accommodate the interests of minorities in democratic institutions? How is it different from, say, political factions dominating certain student societies on campus?
Perhaps I am being unfair here. It’s certainly true that just because something is a general problem doesn’t mean that it is not serious. It’s also true that many of the issues identified by Clark, such as the under-representation of certain groups of international students, are very real. The question, though, is how we should approach these issues. I see no reason why we ought to prioritise, say, “providing services and support to struggling international students” over “providing services and support to all those who are struggling”. I cannot agree more when Clark says, “we must be careful of how we use language to refer to overseas students”. That’s why, given the prevailing social message, we should caution against framing international students predominantly as powerless victims to be provided for. Clark also calls for international students be “respected for their cultural diversity and humanity”. I agree; better yet, why not drop the “cultural diversity”?
Of course, it might be said that some issues are in fact primarily faced by international students. Perhaps, as Clark mentions, these are issues associated with English language skills and cultural differences. As I have written elsewhere, though, I personally find over-generalisations and (well-intentioned) assumptions about my identity a bigger irritation than the lack of meaningful support or services. There are simply way more instances where I am told, “oh, so you study philosophy… not… finance?”
Now, it should be pointed out that different students do in fact have different needs and interests. It’s also the case that the ANU should provide better support and services to its students. (I once had to wait three weeks for a counselling session, which is a common experience of many.) But this makes it all the more important not to generalise — particularly when it comes to groups about whom so many generalisations have already been made.
Perhaps, Clark and I do not really disagree after all. There is indeed no such thing as an international student. What should be remembered, though, is that there is also no such thing as a non-struggling student.
Kida Lin worries that in discussions about international students, we run the risk of replacing one form of over-generalisation with others.
At ANU, we have two distinctly separate SSAF-funded student media organisations: Woroni and ANU Observer. This is perhaps the only example of such an arrangement at any university, at least from what I can tell. In my opinion, this a poor arrangement. Woroni has been in existence in some form or another for nearly 70 years now: it is one of the longest-running student-led publications in the country. It is an institution in its own right. Woroni has evolved over time, remaining relevant to a large section of ANU’s community. ANU Observer on the other hand, sprang to life in late 2016, the circumstances around which are unclear at best. It has quickly gained some popularity around campus. Last year, Observer sought to become an organisation which would receive SSAF monies directly. How Observer did this remains relatively unexplained to students, primarily due to the lack of transparency regarding the justification of the decision. All we have is this response to a question as to why the funding was granted: When Observer first inquired about SSAF funding in the 2018 round, Prof. Baker granted this funding on the strict condition that it have “equivalent governance structures as the existing eligible parties”. Is this really a satisfactory explanation? Perhaps I’m missing something, but logically, two student media organisations on a relatively small campus such as ANU does not add up. We already had, and continue to have, a robust, talented and dedicated student media in Woroni. This is not to suggest that Observer’s team does not possess these attributes, but at the end of the day, both organisations serve a small market, oftentimes producing similar news content. In fact, within both organisations’ governing documents, there are similarities; just have a look at each organisations’ “objects” within their respective constitutions. Furthermore, including Observer in SSAF negotiations has added new constraints on an already limited SSAF budget at ANU. Not only has ANU capped the number of new students each year and therefore the SSAF budget is limited, but now it must be spread thinner – and spread thinner so that Observer is able to pay the students who run it? Or so that it is able to pay rent for office space – rent which will go right back into ANU’s hands? In its 2018 budget, $22,680 of the total $32,000 was dedicated to paying “Allowances and Honoraria” to students in Observer, and now this year, it seeks to make use of presumably a substantial amount of money – though how much is unknown because it remains the only SSAF-receiving organisation yet to release a detailed budget – for office space. This is a luxury. I’m sorry, but to me, this seems like a lousy use of our money. I have a deep dislike for Observer. In my experience, particularly as ANUSA’s Indigenous Officer this past year, Observer has proven itself to be incapable of engaging meaningfully or respectfully with our mob. I would even go so far as to say that it has been ignorant of Indigenous issues, disrespectful, and unnecessarily belligerent and difficult to work with. Firstly, it appropriated an article it wrote for National Reconciliation Week, with quotes from myself, and released it in NAIDOC Week, with no appropriate acknowledgement of the theme or the months of work Indigenous students put in to planning the week. These are two distinctly separate weeks: one a week to acknowledge the past and how we move forward as a community, and the other a week to celebrate the achievements and contributions of our mob. Then, in its originally published “weekly wrap-up” of week 2 (i.e. ANU NAIDOC Week), it failed to mention NAIDOC Week or any of the multitude of activities that took place: implied in its exclusion, it was a week lacking significance for Observer and by extension for the ANU community. Talk about erasure of Indigenous achievement. To be clear, we also had issues with Woroni when it came to the NAIDOC pull-out, but unlike Observer, Woroni was willing to own up to its mistakes and make a heartfelt and genuine, very public, apology. My dislike for Observer does not mean questions around its beginning and its seat at the SSAF table are invalid. We have a right to question these matters and should continue to do so until we receive a satisfactory answer. I encourage everyone to ask themselves: are my SSAF dollars being put to good use? Even if you disagree with my opinion in regards to Observer, check out where your SSAF dollars are going and let Prof. Baker know your thoughts at richard.baker@anu.edu.au. The deadline may be COB today, but it’s your money and you deserve a say. Braedyn Edwards was the 2018 ANUSA Indigenous Officer and is the National President of the Union of Aboriginal and Torres Strait Islander Students. His views are entirely his own and do not reflect those of Woroni.
When one thinks of issues of access and inclusion, student carers are unlikely to be the first group that comes to mind. The very role of a carer is relatively unknown to the public as their achievements are largely experienced by those receiving care. To clarify, carers are individuals who undertake caring responsibilities for a family member or significant other. Those being cared for generally suffer from physical or mental disabilities that limit their capacity to care for themselves. Caring roles can be undertaken part time (sometimes shared between multiple carers) or full time where day to day care is provided by the individual. Those who undertake caring responsibilities do so out of family or friendship responsibility to the person being cared for. Caring is a selfless act as it has no immediate financial benefits and can be a substantial burden upon the carer. This burden is most impactful upon youth carers and student carers, who generally lack the resources to balance caring responsibilities and other commitments such as work and study.
Research into youth and student carers shows that the role can create significant economic and social disadvantages. Maintaining employment can be challenging as a carer’s role can require them to be unexpectedly absent due to unforeseen caring responsibilities. The same is true of education, where absence can be unforeseen and difficult to discuss. Despite the disadvantages faced by carers, their unpaid work is estimated to contribute $13 billion of economic output. This is measured based on the cost of care if it was provided outside of family and friendship networks. Caring positively contributes to economic and social welfare despite the limitations that the role places on carers.
Personal accounts of carers indicate the strain that caring places on the individual. Extra responsibilities such as cooking, cleaning, administering medications and practical tasks take up so much time in the average day that it is completely unrealistic to expect carers to be able to meet all work and schooling deadlines. Carers express feelings of anxiety, depression and isolation as the burden of care takes a toll on overall wellbeing. The lack of structural accommodation of carers contributes to feelings of dissatisfaction and disadvantage. The current social understanding of carers is also detrimental to access and inclusion: carers can feel stigmatised or unable to ask for help as the role is frequently misunderstood. In many cases carers fear that their caring role will be perceived as a personal weakness. This is due to a severe lack of carer assistance and public unawareness. Caring should be reframed as a personal strength, as the role provides significant skills in organisation and management.
Youth carers aged 14 – 25 and student carers represent a particularly vulnerable section of caring roles. The responsibility that caring requires can impact on education and employment, limiting the success a carer can have. This pressure placed on youth and student carers can have long term effects on qualifications and mental wellbeing. Despite the substantial burden that youth and student carers face, there is a lack of institutional support for carers that could help alleviate some of the hardship faced.
The Australian tertiary education system currently offers very little in the way of support for carers through access and inclusion. Some crucial steps forward include modifications to current access and inclusion policies in general and greater awareness of the carer role. Clear policy guidelines are needed to specify the process of acquiring extensions and special considerations for assessment, and greater flexibility is necessary to allow for the extra difficulties carers face. This would work comparably to current extension and special consideration policies to maintain consistency in institutional application. At the moment this poses a challenge as extensions are generally granted on the basis of a medical certificate, and the caring role does not directly affect the condition of the carer. Because of this, a method of carer appraisal is needed either internally through institutions or externally through certification of caring roles.
Increased financial support would also benefit carers in fulfilling caring roles and tertiary/employment commitments. The economic output generated by carers justifies increased funding to scholarships and assistance programs for student carers. Considering the importance of caring roles, supporting these individuals financially would subsidise their invaluable contribution to the economy and facilitate lower levels of drop outs within the carer population.
Awareness is another important element of improving study conditions for carers. One of the biggest contributors to anxiety/depression and feelings of isolation amongst carers is the limited understanding of the importance of caring roles among the broader population. Feelings of stigmatisation have been linked to carers reducing engagement with tertiary programs. In order to increase public knowledge of caring responsibilities, campaigns aimed at spreading awareness and generating discussion are needed. Melbourne University has had success in campaign-based support through their website which contains important information and personal stories of caring responsibilities.
The ANU Carers Collective and Carers within ANU are seeking to engage the public through awareness programs similar to that of Melbourne University. By producing carer-based content and recognition, further advocacy of carer issues can be shared.
ANU should strive to be at the forefront of carer support and inclusion. As a leading Australian university, it has the capacity to radically reform current standards of carer support nationwide. The introduction of effective carer policies here would mean the potential to implement successes more broadly. Extensions and special considerations are an immediate step forward along with initial planning of scholarships and support programs. Following in the footsteps of Melbourne University’s advocacy of carer issues would also increase awareness and public support. This could be achieved by providing an institutional platform to groups like the ANU Carers Collective for advocacy. With University backing, the issues would be more widely accessible and provide foundations for policy adjustments going forward. Student and youth carers are disadvantaged by a lack of structural accommodation through access and inclusion. The strength that carers provide through a supportive role should be recognised and supported by tertiary institutions. Doing so will reduce carer disadvantage and dissatisfaction promoting inclusivity and support. ANU and universities in general should strive to support carers and their ongoing economic and social contributions to society.
Bush Week is always a big week. Compared to O-Week, there is less people and less hype, but more partying. People feel more at home, have settled into university life and they often haven’t seen their friends for the whole break. As this was my second Bush Week (and first time being in a leadership position) I was preparing myself for many things this Bush Week – exhaustion being the main one. However, the biggest struggle was easily balancing my extra-curricular activities, organising and going to events and studying.
Unlike O-Week, many students will find that they have lectures and tutorials in Bush Week (and in case you haven’t checked your course outline, tutorials tend to be compulsory). I naively went into this week expecting I would be able to attend most of my lectures and tutorials – I went to six. Six out of a possible twelve. The shocking part is that this number well exceeded the majority of my friends – many of whom did not attend one lecture or tutorial in week 1. We were all too busy organising events, attending things such as Market Day and helping out on stalls, as well as attending the occasional party. This lead me to reflect on my extra-curricular activities and question whether they are worth the sacrifice my grades are facing.
So many students face this difficult situation – we’re told that extra-curricular activities are crucial and give yourself opportunities, but you also need the grades to secure your place once your foot is in the door. Don’t get me wrong, I am incredibly thankful and humble for all of the opportunities I have been given from being involved with leadership positions, Clubs and Societies and other groups.
However, after Bush Week, I can’t help but wonder whether taking on these extra-curricular activities was the best idea. There is a fine line for university students. We are encouraged to have fun and get involved, whilst simultaneously told to place a huge emphasis on studying. Nothing specifically states when we should start prioritising studies over extra-curricular activities, and when it’s okay to enjoy yourself. I’ve seen so many students struggle to find a balance between the two and this leads to a magnitude of problems – overcommitting, burning out, grade dropping and having no time to rest.
However, what is possibly most concerning is that these students often have little time to take care of themselves and their wellbeing. I have personally found it incredibly difficult to find the time needed to address my mental health problems whilst balancing extra-curricular activities, studies and a job. There are mechanisms in place, such as Access and Inclusion, bursaries and people to speak to that can help you establish a balance give you support (and I would highly recommend looking into these). However, even finding the time to organise these things can be incredibly difficult when you have assignments due, events to organise, meetings to attend and a job to go to.
Right now, I know I am personally feeling overwhelmed at the semester ahead. Trying to balance responsibilities, extra-curricular activities and a job whilst maintaining a decent grade is incredibly daunting. However, something I stand by is that prioritising your wellbeing (which for some people, does includes socialising and going out with friends) is more important than any extra-curricular activity or assignment.
Just try to go to SOME of your tutorials.
Comments Off on In Limbo: Being New in Semester Two
With semester two starting this week, you may be finding it difficult to get back into the swing of things. However, what about those who are starting University for the first time? Although Bush Week attempts to help new students integrate into University life, the semester two intake can feel as though they are in an awkward limbo – as if their University experience is out of sync with the norm. I sat down with three students who started university in semester two, 2017, to hear about their experiences and any advice they have to fellow students who are new to ANU.
What were the challenges of starting University/moving to a new residency in semester two?
Shannon: Starting university in semester two was exciting, as it would be for most students starting university. I can’t say I had a very difficult time but I did face a few challenges that I don’t think would have been present if I started in semester one. Integrating into residential life was challenging. Although people were friendly, they weren’t always willing to invite you to coffee the next day. Friendship groups had already been established and the excitement I was experiencing had slightly faded for those who had already been at university for at least a semester. It was really until the next intake of first years that I felt fully settled.
Vegnesh: I wasn’t introduced to the concept of the Resident’s Committee, nor did I have an understanding of their roles until later on. It was harder to make friends as the new students all arrived at different times, and residents who had been here since semester one had already formed friendship groups. Trying to fit into a group that were already close friends was sometimes uncomfortable and nerve wracking. I found that Bush Week was not as helpful as O-Week, as it didn’t have all of the essential information that new residents need to know. Instead, I had to figure these things out over time. There were also less events, and understanding the whole college system and university took longer. Overall, it was pretty intimidating jumping into a cohort that already was familiar with one another and knew how university worked.
Marina: There were less activities in Bush Week to help meet new people, and everyone already found their good friends. There was also the trouble of trying to plan out your courses. For example, an introductory course usually starts in semester one, so when you start in semester two, professors assume you have knowledge you don’t actually have.
What were the benefits of starting university/moving residencies in semester two?
Shannon: I feel that starting in semester two meant there was a lot more individual attention on your university experience, unlike semester one intake with a very large cohort. Coming in semester two allows you to get an inside perspective of uni life, and then you can come into the following year, still as a first year, ready to hop on board every opportunity.
Vegnesh:The older residents were so nice and welcoming. It was easy to ask people for help, as people already had knowledge about College life and University. It was also easy to put yourself out there and be noticed, instead of being lost in a sea of over 150 new residents.
Marina: Since there were less people around, it gave me a better opportunity to get to know everyone. Although there are also downsides to this (such as everyone already having their group of friends), the whole experience was a lot more intimate compared to starting in semester one.
What would your advice to those who are in a similar position and are starting university in Semester two?
Shannon: My advice would be simple – despite being half a year behind those born in the same year as you, come into your first year with enthusiasm and a confident attitude. Know that although there is a difference between the first and second semester intake, this should not alter your university experience. University is what you make of it and the outcome of your experience falls largely on you, so try be open minded and make your time here a good experience.
Vegnesh: It takes time to get used to being a student when you start in semester two. Patience is key. Eventually, you’ll find your groove and your group of friends. Joining in semester two already makes you unique because you have a story to tell about why you joined in the second semester. You’ll get the hang of everything! Remember that although you want to step out of your comfort zone, don’t do anything that makes you feel really uncomfortable. Finally, always remember to be yourself.
Marina: Don’t be afraid to introduce yourself to a group of people, even if it’s intimidating! You’re new, so this is your excuse to interrupt and join in conversations. Try not to get too disheartened when it seems like everyone already has a friendship group. You’re not alone in that feeling, just try your best, take a deep breath and put yourself in the weird situation of reaching out to others!
Shannon Viall is a first year Commerce/Design Student who started university in semester two, 2017. She calls Namibia home and currently residents at Burton and Garran Hall.
Vegnesh Ganesan is a first year Medical Science student who started university in semester two, 2017. He hails from Malaysia and is currently an International Representative at Burton and Garran Hall.
Marina Mito is a first year International Relations and Sustainability student who started university in semester two, 2017. She calls Japan home, and she currently lives at Burton and Garran Hall.
The first doctor said “it’s a legitimate illness, and it can be very painful”. In some ways, that gave me hope- my pain was validated. The second doctor said “well I don’t really believe in that”. I let him treat me for a year and I think his disbelief did just as much damage as the illness itself. The third doctor said “well it’s just a diagnosis of elimination, it doesn’t mean very much”. By that time, I was immune to the scepticism. It had been three years and I’d heard this a lot.
Fibromyalgia is a condition characterised by widespread pain, extreme fatigue and sleep problems. Some people report having a kind of ‘foggy’ brain, where they feel they can’t remember simple things they used to know. There is no known cause or cure. Sometimes it is attributed to a combination of genetic and environmental factors, especially a physical or mental trauma. Some think it is a problem with the way the brain processes pain, in that all pain is being amplified to unprecedented levels. Others think it’s ‘all in the brain’ (as in our brains are making it up), but I reject this- all pain comes from the brain.
None of this is actually very helpful to someone living with possible fibromyalgia pain. There is really no medicine to help; Panadol and Nurofen are essentially useless (in my experience) and doctors will rarely prescribe anything stronger. This is primarily because stronger drugs are not thought to make any difference to the pain anyway. But it is the case also that too many people believe fibromyalgia sufferers have just made up a bunch of symptoms in order to get access to drugs.
Trust me, it wouldn’t be worth it. I’ve read horror stories online of people in screaming in pain only to be denied proper care in hospital. I’ve heard hundreds of people talk about the years it took to get a diagnosis and the amount of bureaucratic disbelief they had to push against. I personally spent hours of my time with doctors, having MRIs and going over things time again before I was told it was probably fibromyalgia.
Fibromyalgia disproportionately affects women, and I have absolutely no doubt in my mind that this alone has denied thousands of people proper treatment and support. It is a societal shame that women presenting with agonising pain are not believed, are accused of being a drug addict or have all their symptoms chalked down to depression. My hairdresser opened up to me about his struggle with fibromyalgia and it felt like he was talking about a different illness. He was supported, his doctors nipped it in the bud through telling him exactly what treatments (yoga and diet change) would work for him. They even helped him get a nutritionist. And then there was me, sitting there, thinking about how I couldn’t even get my doctor to believe in holistic practices. In fact, I couldn’t even get him to believe me.
People with fibromyalgia are angry. Go on to any online forum and you’ll find people who’ve been trodden on by the system. They are fighting these battles every day, and worst of all, they’re in severe pain during all of it. It’s no wonder the rates of people with fibromyalgia who don’t believe it’s actually a real condition are still pretty high.
For a long time- too long- I have been one of those people. My relationship with fibromyalgia is fraught at best. I’ve been conditioned by the scepticism of those around me to be a sceptic myself. But where has that left me? The word is so hard for me, I don’t even say it. I can’t remember the last time I said to someone “I have fibromyalgia”. Mostly I say “I have chronic pain”. Often I just say “I’m fine.” I have lied to a lot of people about the level of pain I’m in. And who am I hurting? Just myself. The controversy and vitriol directed at fibromyalgia is denying my pain, denying who I am at this moment.
The goal is then to be myself, start making a fuss and start getting people to listen. But we as a whole need to change the way we talk about pain. Change the way we listen to women in pain with no obvious physical trauma. Because I can promise you, if someone tells you they have fibromyalgia, they don’t want your sympathy, your opinion or your drugs- they want you to say “I believe you”.
About eighteen months ago I wrote an article for Woroni for a Spoons edition, about being a type-1 diabetic. So here I am again, doing the exact same thing. What has changed? Where is my new material? Surely I have moved on, expressed whatever sentiment I needed to last time. Maybe there is a new medical breakthrough in the field? And we are one step closer to a cure? Except, there isn’t, and, we’re not.
Everything I faced eighteen months ago, I still face today, and will face again tomorrow. Inevitably I am just a little more wearied by it all, a little more frustrated that things don’t seem to have gotten ‘better’. But how can they, when I’ve so far rejected this part of myself?
It is like that old myth that lightning never strikes in the same place twice. I was diagnosed with diabetes when I was ten years old, yet as I approach my twenty-second birthday, it feels as though I am dealing with it afresh all over again. I have found that with the diagnosis of a chronic illness comes a second diagnosis; a time much later when you feel the same initial confusion, anxiety and isolation you felt all those years ago. A time when you are, in a sense, reawakened to the fact that this illness is a fundamental aspect of your life. The tiny part of you which harboured some false, unhelpful hope that it was all only temporary is shattered, and in its place crashes the weighted realisation that this is permanent.
For me, this probably correlates with a more defined move into adulthood. Along with the usual angst and worries we all feel about the future and its uncertainty, there is an additional feeling of suffocation in acknowledging that whatever direction you are headed in, you will have your illness trailing along behind you the whole time. Financial anxieties are a given; before I even engage in the debate between smashed avocado v owning a house, my thoughts are whether I will eventually be able to afford all my medical costs. My insulin pump, a machine which administers insulin through a cannula, costs around $10,000 if not covered by private health insurance. Those who know me are aware that I do not have a single maternal instinct within me; yet if I ever want to consider having children in the future, being a type-1 diabetic already means I have a higher chance of infertility, as well as carrying increased risks of birth defects, heart abnormalities and miscarriage.
Then there is the rather morbid issue of confronting your own mortality almost on a daily basis. In addition to a host of complications, such as neuropathy, mismanagement of type-1 diabetes can be fatal. I don’t get anxious about growing old; I get anxious that I may never get the chance to grow old at all.
I remember crying to my friend after school one day when I was eleven, telling her that I wouldn’t live past the age of fifty. Now, I actually have no idea where I had pulled that number from, and it was fairly dramatic and unfounded, but when something as simple as forgetting a spare AAA battery for my insulin pump can be a life-threatening mistake, it isn’t easy to remain so rational, or even hopeful, about the future. Part of me still hurts for the scared and confused young girl that I was, and part of me still empathises too – because she seems to have resurfaced lately.
So, the shiny allure of finally receiving Youth Allowance has been somewhat eclipsed by being re-diagnosed. However, instead of ignoring it, or trying to so desperately pretend it doesn’t exist, this time around I am acutely aware that the only helpful response is to accept it. In the past I have tried to prevent it from limiting me in anyway, but anything I achieved I did so fighting against my body: I wanted to prove that I could accomplish things in spite of being diabetic, rather than being capable of things as a diabetic.
To ‘embrace’ my illness is a bit ambitious for me, but a good first step is at least acknowledging it as something that shapes the person I am and aspire to be. That doesn’t mean it has to define me, but if I don’t start aligning goals for managing my illness with my ambitions for the future, I may not have a very bright one.
If I compare what I wrote last year to what I am writing now, I realise that before I was challenging others to understand and accept diabetes, without actually having done that myself. My new challenge is now a personal one, and I hope that maybe in eighteen months’ time I will be able to reflect on this period of re-diagnosis as a formative and strengthening moment. And maybe I will even write about it again.
Comments Off on That One Time Google Told Me to Figure it Out Myself.
I’m someone who is in limbo. On paper, I have a disability, although this is something that I’m too afraid to say out loud. I’m afraid that people will not believe me or even criticise me for claiming to have a disability. A big part of me agrees with them, and that’s why for the most part, I don’t identify as someone who is disabled. I’m not physically disabled, and to most people, I don’t seem to be limited in what I can do.
However, every day I have to take medication in order to function as a regular person. I can’t do certain things that most people have the option of doing. Every once in a while, something will happen that will remind me that I am not normal. That I have a mutation that nothing or no one had any control over.
I suffer from epilepsy. Juvenile Myoclonic epilepsy, to be specific. When I saw a post asking for those who identify as suffering from a disability to share their story, I kept scrolling. I assumed it didn’t apply to me. It didn’t stop me from asking myself – is epilepsy a disability? Am I someone who is, on paper, disabled?
I turned to Google (I know, don’t judge me). According to Epilepsy Action Australia, “most people with epilepsy do not consider themselves to have a disability especially if they do not experience significant limitations…Regardless of how or when epilepsy developed and if it is completely controlled with medication, people with epilepsy are protected by the Disability Discrimination Act.”
So essentially Google was telling me to figure it out myself – do I identify as being disabled or not? As someone who has grown up with a disabled sibling and seen the struggles, stigma, assumptions and limitations that my sibling faces – no, I don’t identify as suffering from a disability. When I think about this, a part of me feels ridiculous for even considering writing an article about me and my epilepsy.
However, before I settled things then and there – I decided to turn to one other source of information. The source that always manages to answer the questions that Google can’t. I went to my Mum.
So at 11:30 pm on a Tuesday night, I flicked Mum a message, asking her if she thinks my epilepsy is a disability. Her answer reminded me of all of the changes myself, and my family, have had to make. Of how my epilepsy has really impacted my life.
Every day, twice a day, I have to take medication. If I don’t, then I start having fits. One fit, and I legally can’t drive for 12 months. When everyone else was turning 16 and getting their licence, I had to wait 18 months before I could drive due to fits and medication changes.
I also constantly find myself in a tricky situation – the main precipitators of my fits are stress and lack of sleep. As I am a university student, stress and late nights are unfortunately too common. Exam period has the extra stress of me waiting for a fit to happen, but I’ve been very lucky that so far I haven’t experienced any major fits or seizures.
However, one of the scariest parts about all of this is that generalised tonic-clonic seizures (also known as grand mal seizures, that cause your entire body to spasm and convulse and there is nothing you can do to stop them) are reported in nearly every person who has Juvenile Myoclonic epilepsy. I have never suffered from one of these, but I have been told to be prepared for it. I don’t know when, where, why or even if it will happen – all I know is that at any moment I could go into a full-blown seizure and have no control.
When I think about my family, I am reminded that my epilepsy has had an impact on my them, and not just myself. From the medications and emotional mood swings that go with them to the VERY expensive neurologist appointments – my family were there for it all. The random calls I get from Mum reminding me about SUDEP (sudden unexpected death in epilepsy) and how she is worried I’ll become a statistic reminds me that even if I’m not worried about my epilepsy, my family certainly is.
Ultimately, I’m lucky that I have access to medications and specialists which allow me to live a relatively ‘normal’ life – something which I have realised is a privilege that too many people are not able to access. I would encourage everyone reading this to go and support groups such as the ANU Disabilities Student Association and advocate for those who have disabilities to be given a fair go. From the NDIS to the resources that are available here at the ANU we can always do better to support those who rely on these resources –
– and we must do better.
I’m sitting in a cafe just off-campus sipping overpriced coffee at 3:30 in the afternoon when it occurs to me that I don’t know how to write this story. I can give a list of dos and don’ts, but that’s kind of overplayed, isn’t it? Lists are, by and large, boring. I’ve written and edited too many in this past semester. There’s got to be something else.
I could write a poem – sure, it’s been a while since I last sat down and put my thoughts down in that way, but leaving room for interpretation means nothing can really be pinned on me when it comes down to it. Oh, you read that poem as a metaphor for [insert subject here]? Cool, cool. I’m open to that.
Maybe I should tell this story for what it is: a story. I was nineteen when I got my first real job at a cafe, and one of the supervisors was showing me the ropes. She was heaving the doughnut mixing bowl to the dishwasher and blasting leftover dough off the rim with the pressure hose. “Usually people just leave it here,” she shouted over the spray, “but I’m a little OCD, so I clean it.”
I laughed politely and changed the subject. A year later, I had another job, and another supervisor said the exact same thing. I don’t doubt that any workplace, in food service all the way to Tesla, is free of the most tried and tested joke in the book: I’m a little OCD. Aren’t we all?
Here’s another story: I’m fifteen and talking to a psychiatrist because I freeze up and panic when there’s a mess. I’m sixteen and my therapist tells me that no, most people don’t have a capital-T Thing about the number five. I’m seventeen and I graduate high school with a decent ATAR – nothing to brag about because I figured that I didn’t really deserve the extra points from disability support. I’m eighteen and uni is great, except I’m taking three showers a day to make sure things stay that way.
The ‘too long, didn’t read’ definition of Obsessive-Compulsive Disorder is this: an anxiety disorder categorised by the presence of obsessive thoughts and/or compulsive behaviours. Obsessions are recurring intrusive thoughts that cause significant amounts of distress; compulsions are the repetitive actions or counter-thoughts used to combat that distress. Here’s the kicker: people with OCD are fully aware that most of the time, the connection between our obsessions and compulsions is totally arbitrary. I know three showers aren’t going to give me an HD-average, but damn if my OCD is going to test that. This is magical thinking in action; if I stick to this completely random, capricious routine, then all the things I’m scared of won’t happen.
Here’s the thing: whenever someone makes an OCD joke, no matter how benign, it takes that whole experience and slam-dunks it in the trash. According to the Royal Australian College of General Practitioners, approximately 1.9 per cent of all Australians live with OCD. That’s just a conservative estimate because this condition is so heavily stigmatised that people don’t want to talk about their own experiences. Whenever someone makes an OCD joke, it’s more than just making a joke: it’s trivialising the stories of every single one of those people, and more.
I don’t want to sound preachy – we all know by now that preaching just pisses people off. Preaching is what pushes people away, and right now I want to connect us through the common goal of not being a dickhead. So, let’s try it out for a change: don’t be a dickhead. Next time you want to describe something as OCD (and this goes for any disorder), take a second to think about what you’re really saying. Because eventually, I want to tell this story without being just another part of someone’s boring repertoire.