health

Government records falsify disabled people’s access to COVID vaccine

I am fuming! Today, I logged onto MyGov to try to figure out some detail of my NDIS plan. There was a note from Medicare about my complete immunisation certificate. I thought it would be interesting to see what was on it, so I downloaded the file and had a look. When I got to the line that read ‘COVID vaccine’ I did a double take. It said I received my first dose of Astra Zeneca vaccine today. I assure you, I did not.

As a person with a disability, I have known all along I’m especially vulnerable to COVID 19. What wasn’t discussed in the initial health warnings around the disease is that it seems people with disabilities seem to also be vulnerable to the social and economic consequences of the pandemic. In Australia, we were totally excluded from the initial responses and have largely been excluded since. It has been heart breaking.

I self-isolated, keeping myself as safe as possible from the disease, always several steps behind the government advice on what to do to prevent contraction. I feel lucky to live in Canberra, where we’ve been COVID free for months and months and now I don’t feel scared to go out to the shops anymore. But I’ve lost the social connections I had before the pandemic. My friends haven’t come back to visit like they did before. I am so incredibly lonely.

Life became so much harder than it already had been during the pandemic. My condition meant it was already difficult to navigate around the world. But now I had to try even harder to avoid areas with groups of people. Panic buying meant the meagre supplies I usually purchased were gone on the rare occasions I could get out of the house. The medicines I relied on weren’t at the chemist anymore. I had to buy more expensive brands to get access to those I needed. Getting to medical appointments became more expensive too. But there was no relief for the cognitive burden of rearranging all this in my head and the financial burden of trying to figure all this out. People with disabilities were simply invisibilised in the response. No one thought of us, not in the health department, not in treasury, not in the community.

I have a condition called Myalgic Encephalomyelitis (ME), a type of Chronic Fatigue Syndrome (CFS). It is a multi-systemic neurological condition characterised by post exertional malaise that also affects the immune, gastrointestinal and other bodily systems. People often have sensitivity to noise or light, cognitive difficulties, muscle or joint pain, difficulty being upright, temperature dysregulation. I have all these symptoms. Not a great deal is known about ME, they don’t even know what causes it. But they talk about onset factors, one of which is bacterial or viral infection. In my case it was bacterial.

What is interesting is that many so called ‘COVID long haulers’ are actually now being diagnosed with ME, so there’s an interesting relationship between the two conditions. But also, we may now have a growing body of sufficiently newsworthy patients to warrant research money into the treatment and management of the disease. But the relationship between the two diseases also had many ME folks extremely scared of catching COVID and suffering even greater setbacks in their ME. People in our community were also concerned about how each of us would respond to the various vaccines given how unpredictable our immune responses could be. I shared these uncertainties, but I was waiting so long for the vaccine, looking forward to a familiar feeling of confidence after being vaccinated.

When the vaccine rollout was announced in Australia, I was so glad to see people with disabilities would be in phase 1. At first it looked like there may be a possibility of either the Pfizer or the Astra Zeneca vaccine, but it soon seemed that only those in phase 1a would receive the Pfizer and even those with health reasons for wanting one over the other would not have a way to access an alternative. When the details can out for phase 1b it felt like a knife through my heart to read that people with ME/CFS were explicitly excluded from receiving the immunisation during this phase. I was fuming.

People with this condition phase so much discrimination and exclusion. When I first got sick, I was essentially told I was hysterical. It was only after spending months with a clinical psychologist that she asked my GP to refer me to a rheumatologist for the ME/CFS diagnosis. I had to fight for three years to gain access to the NDIS, and a friend was then kicked off again after the court found that she should be given access. That fear lives with me every time I go through a review of my plan. There is a huge amount of stigma in the medical profession. Misdiagnosis and mistreatment abound.

Of what is known, we know this is both an immunocompromising and inflammatory disease (among many other things). It should, therefore, meet the criteria to be on the list for phase 1b on two separate counts. That’s before the social model of disability is considered, which I imagine is why people with schizophrenia, for example, were included on the list of conditions making you eligible for inclusion in phase 1b.

A large number of people with ME were too concerned with how their body would respond to the vaccine to want to get vaccinated. But those who wanted the protection should have been able to have that chance. I was tired of being scared, and tired of having opportunities taken away from me. Tired of being excluded from the response to a disease that posed a greater threat to my (very small) life, than it did to the majority of the population around me. I know a vast number more of healthy, able bodied people who have been vaccinated than I do disabled or vulnerable people.

The Disability Royal Commission recently heard that less than 1000 people in disability residential homes have been vaccinated. There are huge barriers for other people with disabilities to overcome to access the vaccine. This government continues to fail people with disabilities over and over again.

When I opened my MyGov account today to see that Medicare had a false record of my receiving an Astra Zeneca shot for COVID I could have breathed fire. Has someone stolen my identity to try and access their immunisation? Is the government trying to falsify data to make the statistics look better on how many people with disabilities have received immunisations? Because I certainly was given no such help in my battle to protect myself from COVID.

May is ME/CFS Awareness Month. If you would like to know more about this condition. Please visit Emerge Australia.

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Pass the snuff and loosen the corsets – they’re back to researching hysteria

Professor Andrew Lloyd is the only advisor to the National Disability Insurance Agency regarding the debilitating neurological disease Myalgic Encephalomyelitis, a type of Chronic Fatigue Syndrome (ME/CFS). A poster for a study being undertaken by his ‘Fatigue Clinic’ at the University of New South Wales asks the sexist question “are women with CFS ovary-reacting?”

ME/CFS is a life altering disease that affects not just the nervous system, but the gastrointestinal, cardiovascular, endocrine, immune and other systems in the body. Up to 240,000 Australians have ME/CFS. It is estimated that a quarter of those are bed or house bound. Others may be able to work but all will have severely affected quality of life. There is currently no known cause or cure for the disease.

Across the country thousands of people with this disease are being refused access to much needed supports through the NDIS, and many more refused access to the Disability Support Pension. These policy decisions are a direct result of Prof Lloyd’s outdated recommendations for patients to undergo Graded Exercise Therapy and Cognitive Behaviour Therapy as curative treatments, or methods of reducing the symptoms of their disease.

However, Graded Exercise Therapy has been shown to be unsafe for people with ME/CFS. Cognitive Behaviour Therapy is a psychological treatment that was first recommended before biological evidence of the disease was discovered. While a very small number of patients has improved with Graded Exercise Therapy, neither treatment has been shown to be statistically effective treatments for the disease defined by the leading international criteria.

ME/CFS effects four times as many women as men. This ratio is the same as autoimmune diseases. The disease has a history (and, all too often, current reality) of sufferers not being believed, misdiagnoses, conflation with psychosomatic diseases and mental illness, and labelling with terms such as hysteria.

Historically, hysteria was a diagnosis given exclusively to women originally described as having wandering wombs, but later to describe high levels of sexual desire, emotional outbursts or nervousness. Not only is hysteria not an actual disease, it’s history as a label men placed on women for exhibiting natural behaviour makes it a touchy subject for modern women who’s health concerns have been disbelieved or downplayed. Even in modern times, the term hysteric is used to describe overly emotional people.

While the relationship between patients menstrual cycle and the severity of their symptoms is an under-researched area, it would be incredibly problematic if the sentiment in the title of the poster for this project permeated the research design. There is a huge amount of poorly designed, unethical, and poorly executed research on this disease and a dire need for high quality biological research. It would be terrible if the University of New South Wales was spending scarce research funding to rekindle outdated views of women’s health.

Research poster at UNSW ‘Fatigue Clinic’

Nadia Murad: small town girl, reluctant hero, Nobel Laureate

Over the years, the Nobel Peace Prize has chosen some doozy candidates, but it remains one of the world’s most preeminent honours. Last weekend, the Norwegian Nobel Committee announced this year’s award would be shared by Nadia Murad and Dr Denis Mukwege. Both these people have fought for years to end sexual violence in armed conflict.

Nadia Murad grew up in a small town in northern Iraq. She dreamed of becoming a teacher or a beautician. But in 2014, her life was torn apart when ISIS forces swept through her village in an effort to kill the men in her community, enslave the women and girls, and convert the boys. Nadia is a member of a small religious and ethnic community. Although they believe in one heavenly God, ISIS believe they are devil worshippers. That day, Nadia was kidnapped, trafficked to Mosul and sold into sexual slavery. She was beaten and brutally gang raped for a month before finally escaping.

As in so many communities, Nadia and women like her who were so brutally assaulted feared the shame of their community. But she bravely stood up and told her story. What happened to Nadia was not her fault. The only person to blame for rape is the rapist. But what Nadia experienced was not just rape, it was part of a campaign to eradicate her community. It was genocide.

As difficult as it can be for survivors to tell their stories, Nadia sat before the United Nations Security Council and told the world what had happened to her. She told them of the pain and suffering she experienced at the hands of ISIS. She told them what they’d done to her whole community.

Since then, she has continued to campaign for justice. She feels her survival obliged her to fight for the rights of persecuted minorities and victims of sexual violence. In a statement after the Nobel announcement, she reiterated that she wanted to see perpetrators of sexual violence in a courtroom, not executed.

But in many ways, she is still beholden to the experience forced upon her. She is still a relatively ordinary young women, wanting to train to be a beautician; but is thrust into the spotlight because of her bravery, and the heinous acts of men from around the world.

After the announcement was made, in a nod to the #metoo movement and the topical Kavanaugh hearings, Nadia said “my hope is that all women who speak about their experience of sexual violence are heard and accepted.”

Nadia Murad at the National Press Club in Washington DC

Nadia is currently working to help rebuild villages that were destroyed in the battle with ISIS. Villages were burned to the ground, there is no medicine or food, and no crops in fields. While the Nobel Prize money, her share will be about half a million US dollars, will be very much appreciated, it won’t go far in the face of such great need. She explained that it costs about $US 20-30,000 to buy back a Yazidi sex slave and estimated there are about 3000 women and girls still held in captivity.

She has now called “on governments to join me in fighting genocide and sexual violence.” The Australian parliament has committed to investigate and prosecute these crimes, but so far has not acted to do so. To do so, they would need to establish and fund a dedicated team to investigate and prosecute our nationals who perpetrated these crimes as well as gather testimony from Yazidis who now call Australia home.

“A single prize and a single person cannot accomplish these goals. We need an international effort.” If all governments undertook such efforts, then, perhaps Nadia will have the prize she truly seeks, justice for her and her community, and a serious step toward ending impunity for conflict related sexual violence.

 

If you’d like to help Nadia’s cause, you can donate to Nadia’s Initiative via squarespace at https://nadiasinitiative.org/donate/

I was hit by a car

Yes, I was hit by a car; a white courier van to be precise. Of all the things I’ve imagined in my life, this was not one of them. It happened two weeks ago to the day. I was crossing Northbourne Ave, Canberra’s main northern arterial, at an intersection beset by roadworks and temporary alterations. I saw the car about to hit me, then it hit me and I was on the road on my back in extreme pain.

Luckily for me, my mobility scooter seems to have acted as a crumple zone, being the most significant thing to break in the crash. I remember being very distressed as I lay there on the road: worried about that mobility scooter that had been kindly donated to me because the NDIS had refused my application for assistance; the driver of the van because I imagined he’d have seen me right up in his windscreen and I thought that would have been terribly traumatic; and the bottle of shampoo I’d just bought with the last of the money in my bank account because I was due to be interviewed the next day and I didn’t want to have greasy hair.

There were so many people at the scene. One lovely lady who’d been waiting in her car when I was hit was a nurse, she pulled a blanket from her car and stayed by my side, making sure I didn’t pass out. I held her hand so tight I think she may have been in pain herself. When I explained how my disability made me incredibly sensitive to sound, the fireman on the scene gave me their (amazing) earmuffs to block out the cacophony. The ambulance arrived in quick time, took good care of me and rushed me to hospital.

I was incredibly impressed by the trauma team at the Canberra hospital who listened to me, and changed their regular routine in response to my sensory sensitivity. I was scanned and x-rayed quick smart, each of my damaged extremities imaged and assessed. Lucy, the trauma nurse, looked after me incredibly well. The whole team made me feel safe, secure and calm, despite the crazy situation. When I asked, for sentimental reasons, if they could not cut off the t-shirt I was wearing, they didn’t even bat an eye. I thought that showed great kindness. I told them it was a shirt I bought when I travelled Africa with one of my high school girlfriends, when my life was better. We did, however, cut off my bra.

‘The T-shirt’ from better days, as seen on my birthday in our friends’ village in Uganda

The only bone that was broken was my right thumb, but everything hurt and the only limb that worked properly was my left arm. I am right handed. While I guessed getting hit by a car would hurt, after a week when my legs still didn’t work and the pain in my thighs woke me screaming in the night, I started to wonder what exactly was wrong in my body. Bones aren’t the only things that can break in the body, but I hadn’t realised the ‘soft tissue’ in my thighs had such depth that it could be the source of such deep pain! A few days later, I thought the pain must surely start to dissipate, but it just kept evolving like some cruel sorcerer.

I suffer from a debilitating condition called ME/CFS. I am sensitive to sound, cognitive overload and too much physical activity. Each of these triggers leaves me unable to walk, talk and even think. I wear noise cancelling headphones to help manage that sensory input, but construction sounds set off an acute physical reaction in my body; reducing my capacity to absorb information and make decisions. That day, riding my scooter down the footpath beside Northbourne Ave, I had passed an angle grinder, a concrete saw and an electric edge trimmer. I knew my body wasn’t functioning well. I had traversed many detours and intersections altered by roadworks. When I approached the intersection at which I needed to cross, I was confused by where I was supposed to cross and where the lights were. I observed the traffic: saw two lanes of stationary cars and the third lane was empty. When a pedestrian crossed ahead of me, I crossed the intersection.

 

I was barely a meter out from the island when I saw the white van was about to hit me. Then it hit me. If the van’s windscreen/bonnet formed an angle like 1 o’clock, I remember hitting it at midday till about 10 o’clock. That time frame is the scene that ran in instant replay in my dreams in the following weeks. I don’t remember much more from that 10 o’clock till I was on the road, I wonder if I bounced, before landing on my back with my knees up. The driver ran out. I remember he asked if I was OK and somehow, possibly sarcastically, I said ‘NO! Call an ambulance!’ he started telling everyone he’d been driving at 60km/h.

Later, I looked up the stats. People who are hit at 60km/h have an eighty five percent chance of dying. I only broke my thumb. Don’t get me wrong, my pain and suffering have been intense. But I also feel incredibly lucky. Wonderful friends, family, feminists and colleagues have all be generous in the support they have shown. A complete stranger even cut my hair in my hospital room so I wouldn’t have to worry about trying to keep the birds nests out of it and wash it when my body was so pained.

But I had diminished capacity when I crossed that intersection and the investigators have recorded the accident as my fault. So I will not be able to claim the government insurance scheme designed to cover pedestrians and other third parties in road accidents. My mobility scooter was donated to me by a small businessman when the one I inherited was flooded earlier in the year. My noise cancelling headphones were destroyed. I have no money and no insurance. In addition to needing to heal from the crash, spending weeks in hospital, and then post hospital treatment (for which I cannot pay), I have lost the key tools that help me exist in the world, exist with a disability and still participate and contribute to society.

I need help to recover. An old friend of mine has started a gofundme page to help get me back on my feet, so to speak. That scooter was worth $6000, new headphones cost $400. Post-hospital osteopathy will cost an average of $140 per session (per week). I need to move out of my third floor flat into a ground floor place with disability access and have no money for removalists or the standard ‘deep clean.’ The gofundme page aims to raise $10000. Please help, donate if you can and spread the word.

Gendered insecurity in the Rohingya crisis

Last month, Human Rights Watch released a report confirming that the Burmese security forces “have committed widespread rape against women and girls as part of a campaign of ethnic cleansing against Rohingya Muslims in Burma’s Rakhine State” since 25 August 2017. The report found that the actions of the military, border police and ethnic Rakhine militias amount to crimes against humanity under international law.

Although there is no legally agreed definition of ethnic cleansing, the description developed by a UN Commission of Experts holds significant sway. They described ethnic cleansing as ‘a purposeful policy designed by one ethnic or religious group to remove by violent and terror-inspiring means the civilian population of another ethnic or religious group from certain geographic areas.’ The events of September and October have certainly served to remove Rohingyas from northern Rakhine State.

In early December, the International Committee of the Red Cross, one of the very few international organisations with access to effected areas inside Myanmar, reported that “formerly energetic communities and village tracts are suddenly empty. Life continues for those that remain, but in certain parts of Maungdaw and Sittwe, there is a pervasive sense of absence.”

MSF have now also released extensive testimonies from survivors on the killing, arson and sexual violence they have experienced. Ninety percent of the survivors of sexual violence treated by MSF were attacked after 25 August. Fifty per cent of survivors are under the age of 18, including several under the age of ten.

Early reports of the number of pregnant women and new mothers in the refugee population could have been used as an indicator of increased conflict related sexual violence and ethnic cleansing. While the accuracy of the data and a heightened tendency for pregnant women to flee may both affect the analysis, the matrix of indicators of conflict-related sexual violence developed in response to UN Security Council Resolution 1888 identifies an increase in cases of unwanted pregnancy as an indicator of ongoing sexual violence. International non-governmental organisation Ipas, began increasing its response to the crisis, providing trainers to ‘provide on-site training for health workers in postabortion care’.

That same matrix also reminds us that the increasing ‘statements from doctors, war surgeons, gynaecologists and/or medical NGOs that they are increasingly seeing rape-related injuries’ are an indicator of ongoing sexual violence. As early as September, doctors from the International Organization for Migration, as well as a range of UN agencies and non-governmental organisations, reported high numbers of patients with physical injuries that are consistent with violent sexual attacks, including forced penetration and lacerations to the vagina.

In the two weeks immediately proceeding the crisis, the lead UN agency on sexual and gender based violence (UNFPA), provided services to 3500 Rohingya refugee women who had been sexually assaulted. It is incredibly difficult to gather large-scale data on sexual violence in emergencies, but we do know that only 7 percent of women subjected to sexual violence during the conflict in East Timor reported it, and only 6 percent of rape victims during the Rwandan genocide sought medical treatment. If the women and girls who have reported to those health clinics represent 6 percent of victims, they would be the tip of just one iceberg comprising 58,300 women and girls.

If we had used a gendered lens to analyse the unfolding crisis from the outset, we would have had a better comprehension of the ethnic cleansing that was occurring from the outset. This could have better informed humanitarian and international legal responses. A new comment in the Australian Journal of International Affairs unpacks reported figures of pregnant women who are seeking refuge in Bangladesh in an attempt to understand some of the gendered dimensions of the conflict. It proposes possible reasons for the presence of a high proportion of pregnant and lactating women in the refugee population, and goes on to reflect on indications of increased conflict-related sexual violence and ethnic cleansing. It shows that, while failings in the quality of data in emergencies mean it cannot be relied on as the basis for rigorous conclusions about the gendered nature of conflict, when taken with qualitative reports, and compared with other emergencies, gendered data can be used to build a better understanding of the conflict.

In the first two weeks of the Rohingya crisis, UNICEF reported that an unprecedented portion of the refugees fleeing to Bangladesh were children. The Chief of Child Protection for UNICEF in Bangladesh, Jean Lieby announced that preliminary data showed that 60 percent of the arriving refugees were children, who were often unaccompanied. Such extreme family separation can be an indicator of the degree of chaos and of rate of adult deaths. This second indication is reinforced by the fact the next largest age group of refugees are the elderly. UNICEF also reported that 67 percent of the refugees are female. Combined, this could indicate fighting age males had been targeted in Myanmar.

In mid-September, the Bangladesh Ministry of Health reported that approximately 70,000 of the Rohingya refugees who have arrived since August were pregnant or new mothers. This would represent a staggering 20.8 percent of the female population. Despite the high birth rates among Rohingya communities, we know that Rohingya women have an average of 3.8 children in their lifetime, we would expect only 6.9 percent of the female Rohingya refugee population to be pregnant or breastfeeding. The Bangladesh home minister has said that 90 percent of the refugee women have been raped. That would equate to over 335,600 people.

Peter Bouckaert, emergencies director at Human Rights Watch, said that “the level of hatred and extreme violence—especially towards women and children” is driven by dehumanisation and racism. Because the Rohingya have been described as “too dirty” for soldiers to rape, he believes there is no doubt that “the majority of the women who were raped were killed.” The organisation has drawn connections between what is happening to the Rohingya in Rakhine State and what occurred during the genocide in Rwanda.

Indeed, a comparison of the above data on the Rohingya refugees to that which we saw in the aftermath of the Rwandan genocide provided an early indicator of ethnic cleansing in Rakhine State. UN reporting in the aftermath of the Rwandan genocide indicated that the genocide had so rapidly altered the demographics that 60–70 percent of the population was female. It was estimated that the Rwandan refugee population exceeded pre-war fertility. In the immediate aftermath, this was presumed to be the case because of the high number of men who were killed during the genocide. Adolescent and adult males under the age of 45 were the primary targets in the early stages of the Rwandan genocide. There were also “indications that attempts to exterminate women, girls and the elderly eventually encountered significant popular opposition”. But sexual violence was a key feature of the Rwandan genocide. Although, as in the Rohingya case, the majority of rape victims were then killed, most recent estimates indicate that in excess of 20,000 Rwandan children were born from genocidal rape.

It is hoped that the new comment in the Australian Journal of International Affairs, and the general analysis described here, will serve as a reminder of the importance of gendered, cross-disciplinary research to accurately understand forces of peace and conflict in the world, and to inform appropriate policy responses such as humanitarian assistance and international legal action.

Suicide prevention in an era of diminishing social welfare

When I think about suicide it is for one of two reasons. First, the system that is supposed to help and protect me is so inaccessible and combative that the future is too bleak to go on. The second is that I am just too exhausted to continue. This issue, of course, ties into the nature of the chronic illness from which I suffer. But the first point is more systematic and it is the reason why I cringe at ‘suicide prevention’ funding and programs.

A recent study in the US showed that in states where gay marriage was legalised, suicide rates in young LGTBQI people were substantially lower than states where gay marriage wasn’t legalised. Researchers found that while marriage was not at the forefront of the minds of young LGTBQI people, its legalisation meant it was a possibility. This in turn showed young people there was a possibility for something brighter later in life.

Suicide prevention programs and funding usually focus on two things: raising awareness and asking for help. After a lifetime in the advocacy game, I will quite firmly and confidently tell you that raising awareness is not a legitimate or effective campaign objective. It is not enough. It is virtually impossible to measure. It is a poor substitute for actual action; a poor substitute for actual change.

Asking for help is important to develop coping mechansims and medical assistance. But what about when there is no help? What about when the situation that has led you to these thoughts isn’t solely due to mental illness; when the problem isn’t medical but is multilayered, bureaucratic and socially systemic?

It is poor effort for a government to announce an increase in ‘suicide prevention’ programming when they are cutting the welfare that the most vulberable Australians rely on, when the housing crisis means more and more people are homeless and forced into extreme housing stress. When the disability support pension is so difficult to apply for that the most vulnerable can’t manage the bureaucracy required, when even those trying to do the right thing are penalised when they can’t meet changing criteria for the maintenence of payments. When they live in constant fear that Centrelink will send them a bill for thousands of dollars. When their disability restricts their mobility, preventing their attendance at appointments made just because they need to be.

When employers won’t consider flexibility needed to capitalise on the skills of someone with a disability. When universities are so inflexible that they threaten to cancel the enrollment of intelligent, capable students with special needs. When public spaces and social norms make social engagement virtually impossible and society says that only healthy people are suitable mates for intimate relationships.

When the government defunds the community legal centres that provide assistance to victims of domestic violence that is both a leading cause of disability amoung young women and a high risk factor for victimisation. Those community legal centres also provide the disability discrimination lawyers who work with clients that universities are threatening.

Do you know what it’s like to listen to four consecutive federal budget speeches and know that you are the person the government is talking about when they coin the term ‘leaners’ when they talk of the burden of social security? When your senator undertakes a major survey of their constituents, questioning the very existence of the public health scheme that is supposed to allow you to engage in society in a more holistic way?

I am no psychologist. I am not an expert in public health. I am not a psychiatrist either or a mental health professional of any description. But I know what my experience has shown to be too much to deal with. In my experience public interventions that reduce these structural issues are a far more important intervention than raising awareness about suicide in Australia.

The number of Australians who know that suicide is a problem will not stop me ending my own life. But if there were fewer battles to face to keep a roof over my head and allow me to meaningfully contribute to society in accordance with my own strengths and capabilities, that would stop me wanting to end my own life.

Yoga Your Way

Today is International Yoga Day. I was fascinated yesterday, to read an article by Gina Woodhill on issues in the yoga industry in Australia. I would not be surprised if similar issues applied in other western countries. I agree with and am similarly concerned with the issues. I do not go to yoga classes. I have had several experiences with yoga teachers who show the arrogance she spoke of, and I have not felt such classes met the intent of yoga practice. But I do practice yoga.

I practice yoga at home, or in my office. Most recently, I practiced on my friend’s balcony in beautiful Brisbane. I don’t own a yoga mat, yoga pants or have a favourite yoga studio. I can’t afford to take a class and prefer the independence of solitary practice. In the cold Canberra winter, I like to practice when my body is warm after the shower. When I’m at home, I may lay a blanket on the floor. I like to practice in my pyjamas.

Pyjamas, balcony, yoga (the mat belonged to my friend)

Pyjamas, balcony, yoga (I borrowed the mat from my friend)

I started practicing because I wanted to move my body in healthy ways. I have a chronic health condition, Myalgic Encephalomyelitis. I am fatigued by auditory overload, cognitive overload and physical activity. When I fatigue, my neurological function deteriorates to the extreme; I have trouble walking, talking and even thinking. When I fatigue like that, it is very undignified. My body sort of collapses in on itself, and when I am extremely bad, tears may fall from my eyes and my nose may run. It is easy to hate my body for what it cannot do, and what it does do.

I practice yoga to learn to love my body, to be mindful of what it can do, and to appreciate it. It makes me feel good. It is good for my mental health, and for my physical health.

I do a simple Sun Salutations routine, from an app on my mobile phone. The app is from yoga.com, the routine is labelled as wellness for beginners. Doing yoga has helped with my balance and my strength. I am sure it has contributed to my reduced reliance on my walking stick. It also improves my posture, which is important after the indignity and physicality of collapsing in on myself.

Since getting sick, I’ve needed to learn to seriously listen to what my body tells me. I have needed to learn to identify triggers, to know when to stop an activity, and learn to recognise the onset of an episode or deterioration. My understanding of good yoga practice is that it is deeply tied to this notion of mindfulness; one of the key benefits I gain from my practice.

I had always been concerned about protecting my back from an old thoracic spine injury. But practicing yoga in this way also helps me manage my back; preventing flare ups and pain management.

I don’t think yoga is just for svelte women in lycra pants in classy studios. I think yoga is for everyone. This International Yoga Day, I hope more people can identify the ways in which yoga might be accessible for them and improve their wellbeing the way it has improved mine.

#thisgirlcan

A friend of mine recently posted this youtube clip.

I jiggle therefore I am.

Feeling like a fox,

I kick balls,

Deal with it.

Damn right I look hot.

 

I was stoked. He does such great work (for his take on ethical fashion check out ishivest). He’s a great guy, working on community engagement and participatory democracy in Chicago. He’s also pretty good looking. It made me happy that someone of such calibre was posting a clip about women’s body image. It’s not just any clip mind you; it’s great.

This Girl Can is a women’s health campaign from the UK and I can’t think of a healthier message. It taps into one of the issues described in Emma Watson’s He for She speech at the UN: women and girls opting out of sport because they don’t want to look muscly, are embarrassed about sweat, or the other things that go with being active. But it’s not just that. It’s not about being thin, being good, or winning. It’s about moving and relishing what that does to your body.

I’ve never really felt the fear of sweat or muscle that I hear those women talk about. I’ve never been thin, but I’ve always liked working up a sweat. I jiggle. I sweat. When I’m rocking on the dance floor I feel like a fox. I love to kick a soccer ball; I do it with attitude, even if I’m not very good at it. I enjoy it. Damn right I look hot, I am hot; that’s kind of the point isn’t it, to get the heart pumping?

I’ve never been sporty, but I’ve been a relatively active person most of my life. I loved swimming from an early age: it was my thing, the sport I did as a kid. I didn’t learn to ride a bike till late in primary school, but when I bought my own, I loved to ride it to school. I was a Girl Guide and loved to hike. I loved orienteering. I joined the Army, and served for many years. I used to love running. I tried combatting my fear of heights by taking up rock climbing in the Grampians. I travelled to Africa and climbed a live volcano; that was hard work.

I climbed an active volcano and camped the night on the rim of the crater.

I climbed an active volcano and camped the night on the rim of the crater.

But what I really love about the This Girl Can video is the diversity of subjects. There are women of colour, women with disabilities, skinny women, bigger women, young women, old women. The campaign isn’t about a goal, or a competition, it’s just about moving what you have as best you can. For me, that’s a very empowering message.

A couple of years ago, I had a minor surgery and got a major infection which left me with a chronic, disabling illness. Now, I get auditory overload. I get cognitive fatigue, and physical fatigue. When I fatigue, I have trouble walking, talking and even thinking.

I can’t be around loud noises. So there’s no more dancing in clubs for me. Oh how I miss dancing. I can’t be in a place where lots of people are talking at once, so even backyard parties are a problem. Soccer is out of the question. If I go swimming, I need to be careful that I have enough energy left to climb the three flights of stairs to my apartment. I live alone so I need to leave myself enough energy to be safe and self sufficient. Yes, sex is a problem.

It’s been hard not to resent my body; not to be angry at being trapped in such an unhelpful place. It’s scary. It’s disempowering. It’s upsetting. It’s frustrating.

Sometimes people say, ‘you should keep positive.’ But as our beloved Stella Young used to say “no amount of smiling at a flight of stairs has ever made it turn into a ramp.”

 

Part of maintaining my quality of life and good mental health is re-imagining a positive future for myself, within the confines of my current condition. It’s not healthy to go on falsely expecting everything to go back to the way it was before, if it won’t. No amount of smiling at the Hip Hop club will make me able to go in and dance the night away; or even have one dance without collapsing in the corner, a spastic bundle unable to control my limbs. So I am on a journey; learning to love my body for what this girl, and this body, can do.

There are a whole range of bonus This Girl Can clips. There’s one about a busy mum, one about losing inhibitions. But I really like the one called Grace Vs Pace. Grace rides a bike. She doesn’t wear lycra and she doesn’t go fast, but she goes and I think that’s great.

 

These days, I’m managing my health well enough that I can ride my bike from home to my office at uni. I ride my bike, and I do yoga.  I can’t afford lessons or anything; I have an app on my phone. I just have a little town bike, with three gears. I dawdle my way down the bike path, letting the men in lycra zoom past me. I love it. I love the physical act of cycling, I love the quiet bike path, I love that I’m doing something active, and I love that I don’t need to take the bus. When I get to uni, I open my window onto the oak filled courtyard and do a simple yoga routine. It calms me, it gives me the time to be mindful of my body, and to work it gently, kindly, beneficially.

There is no inspiration porn here, but someone trying to figure out what #thisgirlcan and I love that I’m able to do something good for, and with, my body.