disability

Invisibilising the disabled life

In the past 4 weeks two able bodied women with international careers have been in the public eye, being credited for the work I have spent day and night undertaking from my sofa in my pyjamas confined to my home with a chronic disabling illness for the past two years.

Our beloved Stella Young is of course right to argue that people with disabilities should not be your inspiration porn. We should not be espoused for merely taking a breath each day and living our lives. But you know what. Living with a disability is damn hard. It is exhausting, expensive, degrading and all of that, sucks.

I know that I am essentially unemployable. My chronic disabling illness, ME/CFS, makes my cognitive and physical capacity unpredictable. Meeting other people’s timelines and expectations can be impossible. But I still have skills, knowledge and expertise. I still have something to offer the world.

For the past two years I have some of those skills, knowledge, and experience to help Afghan women’s rights defenders escape the Taliban. I spent years as an Australian soldier, managing secure telecommunications networks, decades working to advance gender equality and supporting women affected by conflict, including nearly two decades working on Afghanistan.

My condition makes me vulnerable to COVID. So, for more than three years, I have largely existed in the confines of my own home. When the government said people could go back to mingling in groups, my friends went back to their lives, but I stayed home to try to protect my fragile body from getting any weaker than it already was. Even the friend who was my first bubble buddy is more worried about protecting herself than me now.

I’m not able to drive. To get anywhere, I need someone to take me. But I am alone in the world, no family or partner go through life with, let alone drive me to the shops or a medical appointment. Being unable to travel means I don’t get to spend time with my grandparents, or loved ones who may be further away. I don’t get to share a Sunday dinner with my Nan, and I’m excluded from family discussions about her welfare. I’m ignored in divisions of her trinkets and didn’t get to collect plants from her garden when she moved.

I try do to do the best with what I have. But by God it hurts when the system just keeps pushing back and giving to those who already have, and pushing me away.

I started a campaign to help end impunity for conflict related sexual violence, trying to get justice for members of the Yazidi community who survived genocide, and human trafficking for the purposes of sexual slavery as part of ISIS’ war in Syria and Iraq. But governments failed to act on their own legal obligations even when I spelled it out in front of them, and had their own parliamentarians speak the words on the floor of parliament.

I developed a social enterprise to help Yazidis fight against that genocide by showcasing their food and culture in a café and community space in Wagga, drawing on produce and small business products from their new home in the Riverina. But the Federal Government pulled out of the grant we were expecting and gave the money to groups who already have access to capital.

After spending years paying 70% of my disability support pension on my private rental property to save myself from homelessness, I finally accepted a government housing property on the condition the back gate be widened so my mobility scooter could safely be stored inside the back yard. Three years later, I am still struggling to have either ACT Housing or the NDIA make the path to that gate safe. I don’t have enough income to pay for my own medications, let alone the start up costs for the business that would help thousands of refugees.

Since the fall of Kabul, I have helped over 300 Afghan women’s rights defenders escape the Taliban and reach final destinations of safety in Australia, America, Canada, Ireland, Brazil, Greece and Spain. I don’t even count the others I’ve helped who don’t meet my definition of women’s rights defenders: people who worked at the Australian Embassy, translators who worked alongside international security forces, journalists… the list goes on.

It is dangerous work, that I’ve undertaken with a range of networks and volunteers who have lent their own skills and networks to do background checks, strategise, raise funds, find seats on flights, secure visas, provide care packages and more. All the while, we need to keep our people in Afghanistan safe from Taliban interception, arrest, or worse. Because of this risk, we rarely get to talk publicly about what we do.

Last month, a woman who I’d worked with on a few families, and had coordinated our financial transactions for a while, was granted the keys to the City of Newcastle in recognition of our work. This woman had bought one huge family to me, and been crucial in their evacuation, as well as the evacuation of several other associated families. The financial management she and her partner did for several months was also hugely important to our operations. But I was disgusted to see the ABC credit her with the evacuation of 300 Afghan women’s rights defenders. This is simply not true.

When I had been struggling deeply with my mental health, this woman had inappropriately bypassed me and went directly to my key donor saying she didn’t think he should be providing funds to my operations. Without his funds, dozens of people would not have been evacuated, dozens more would have been left without housing and food. Thankfully, the donor didn’t agree with her view point.

This woman has been immensely rude to me in our interactions, but never fails to snap to me if I am even short with her, saying “you can’t talk to me like that, Susan.” She ignored my own communications about my health when I was fully incapacitated by my COVID vaccine, trying to claim authority over my own body because her sister is a doctor.

I had never even been invited to one of the celebrations she arranged to recognise people who participated in the evacuation of various families. I definitely wasn’t invited to the International Women’s Day event where she was awarded the keys to the City of Newcastle, where so many of those families have settled.

I know I help so many people, people she will never know. I am glad to help former diplomats whose colleagues were left behind, soldiers who worry about the interpreters and officers they worked with. But most importantly, the network of incredibly strong, capable and brave Afghan women who spent decades fighting to build a better country for themselves, their sisters and daughters.

But it is so hard to see other people taking credit for that work, being made invisible in the process, struggling at home, without even the medicine I need to survive. I live with so much physical pain, I have trouble sleeping. The feeling of aloneness can be so intense.

Earlier this month it happened again. The heads of an organisation I’d worked with since the fall, featured on an ABC TV program claiming they evacuated over 80 widows and orphans from Afghanistan. There were full quotes in the program that were complete lies. When neither of the heads of this organisation were involved in the planning of the first evacuation at all, but I had planned it step by step, in great detail to ensure the minimum stress on the orphans and make sure there would be no reason the Talibs would suspect anything was afoot. Those orphans had been given visas because they were on MY list of people needing to be evacuated. It was not random as was claimed in the show.

The Taliban consider it Haram for orphans to be taken out of Afghanistan, so any evacuation was always going to need to be planned with utmost precision. While the Kabul airport was still controlled by foreigners, I worked with another network to design an operation to take the children through there, but it relied on them being given visas. When those visas didn’t come, we told the organisation it was not safe to take the children to the airport. We knew the situation at the airport was dire and people would not be let in without visas. But this advice was ignored.

They took hundreds of children to the airport anyway and rang me in the middle of the night when soldiers from all sides were firing. They “said, give me the number for the Minister,” they’re not letting us in. If we can just call the Minister they’ll let us in. But it didn’t work like that at all. They had taken the children into harms way for no reason, against security advice. I told them to take the children home. The security forces would not be letting bus loads of children into the airport without visas. We knew there was an incredibly high threat level. Indeed not long after that, a suicide bomb went off killing hundreds of people.

I, and the head of the network I’d been working alongside, begged the organisation to start alternate planning. But the organisation refused. Even when I had them agree to let me evacuate the 17 orphans and carers who had visas, they still refused to let me plan with them for next steps. Once again, they had a media story about the evacuation, claiming all credit.

Eventually they were finally granted visas for about 70 other people. I told them what needed to be done. I arranged an organisation to partner with who, had experience moving large groups of people without passports. But they did not follow up with this organisation. I received a phone call from the border, pleading for my help because they had people unable to cross. I woke people up from my network and arranged several solutions to the problem, but each was refused.

Maybe these people thought they knew what they were doing. Maybe they thought having seen me evacuate one group, they thought it was easy. Maybe they just thought they knew better. But they didn’t.

Several evacuation groups backed out of helping them.

In the end, I convinced my network to help. I didn’t want the children to suffer because of the behaviour of the heads of the organisation. But my team had been right to refuse to help initially. These two people did not follow the rules we have in place to keep everyone safe, to minimise all the risks in this highest of risky context.

Communications rules were broken. More people were sent than should be. Transport did not follow procedure. In the end, people were arrested. Children were arrested. They were sent to prison, and all the information (that should not have been) on their phone, was seen and recorded by Taliban intelligence. Directions were again disobeyed during negotiations for their release.

Those children spent far longer in prison than they needed to. The adults who were detained months earlier were there because of poor understanding of security. They had been charged with trafficking children, among other offences. But the heads of the organisation continued to ignore our advice.

When they went public with the story about getting those 70 orphans out of Afghanistan, an operation that my team and I planned against the greatest possible challenges, they put the lives of at least three people on the line. The young man who had been our coordinator in Kabul had his role in the evacuation absorbed by the Taliban when they arrested those children at the border. He comes from an ethnic minority and had served alongside foreign troops in northern Afghanistan. The organisation didn’t even apply for a visa for him. He can’t even afford a visa to a neighbouring country to flee.

When they went public with this story, shoving the evacuation in the face of the Talibs, they put him in danger. They did that without even attempting to mediate this risk. The two men who remain in prison because of their actions, will likely be killed. There is nothing I can do for them. But I could do something for the man who coordinated the evacuation from Kabul.

Instead, someone else was too busy taking credit. Once again, systems are in place allowing those who have to keep having, and those without miss out. That organisation has a multimillion dollar turn over. I receive no income from the work I do. That man was an orphan, he comes from an ethnic minority, a group different than the people who run the charity in the news. He and I are left to deal with aftermath.

I am so, so tired of the world set up like this. Where white Christian refugees from Ukraine get more help than the brown Muslim women our countrymen fought alongside in Afghanistan.

Did you know I spent three years fighting for access to the NDIS so I could have assistive technology, allied health, and support workers to get me through daily living? It was finally a court who decided I was eligible. The NDIA sent a load of lawyers from private law firms after me. But I have the Administrative Appeals Tribunal decision stating I am eligible under all three criteria of the Act. Well, last week they NDIA wrote to me trying to say I need to reprove my eligibility all over again.

You see, those who don’t have, we just take up too much damn room. My local MP didn’t do anything about it. She did nothing about the grant the Department of Home Affairs led me to believe we’d be getting. She did nothing about the skilled migrant visa scheme I tried to establish to get Afghan women’s rights defenders to safety. And she didn’t agree to the Stronger Communities Grant we requested for our work with Afghan women’s rights defenders. So what’s the point, hey? What’s the damn point!?

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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.

Greens policy on ME/CFS

The Australian Greens have launched a policy on the debilitating neurological disease myalgic encephalomyelitis, a type of Chronic Fatigue Syndrome known in Australia as ME/CFS. Senator Jordan Steele-John has campaigned passionately for patients with ME since coming to parliament in 2017. This is the first ever political policy to be released on ME/CFS and is well timed with a Federal election due in May.

The Senator was kind enough to call me today to discuss the new policy. After years of campaigning with the hashtag #millionsmissing from their normal lives, the Senator explained this policy was an important way to show the patient community that they were no longer invisible. “When the evidence shows that a disease like this is real, it doesn’t mean that people automatically stop experiencing stigma.” He went on to say this policy was designed to show that it was not just his words that the Greens had to offer ME/CFS patients, but the whole Green movement now had a plan for action to help make their lives better.

The Greens’ policy has four parts. The first is to increase funding for biomedical research to $15 million dollars that would be administered by the National Health and Medical Research Council. This would allow funding for a range of innovative work being done across Australia by a range of different organisations. It would be enough to cover the gap in funding to scale up the sample size of calcium ion channel research being undertaken by the National Centre for Neuroimmunology and Emerging Diseases, as well as a range of other significant biomedical research projects. Since the release of the Greens’ policy, the Coalition Government has announced $3 million dollars in ME/CFS research funding.

Secondly, they propose a national ME/CFS summit to bring together patient advocates, biomedical researchers, clinicians, the National Disability Insurance Agency (NDIA), Department of Human Services, and Department of Social Services. Such an event could be facilitated in such a way that it would catalyse policy alignment between all these groups, with a particular focus on government departments, service providers and medical practitioners. At present, the discrepancies between current research, medical practice, the NDIA and other government departments pose a significant barrier to the health and wellbeing of the hundreds of thousands of Australians who suffer from ME/CFS.

In many cases, patient advocacy groups have been the only source of support and guidance through these frought bureaucratic processes that combine to discriminate against people with ME/CFS. These groups have run on the smell of an oily rag for decades but take a leading role in coordinating communication and advocacy to improve the standard of care for ME/CFS patients. Funding and support of these groups is the third component of the Greens’ policy and it is long overdue.

The fourth component of the policy is a promise to provide participant pathways for people with ME/CFS to access the National Disability Insurance Scheme (NDIS). The NDIS was established with the explicit purpose of supporting Australians with disabilities to access social, economic and community life. Senator Steele-John was infuriated by the revelations that the NDIS had vastly underspent this financial year, but was still failing so many Australians in need of support.

There are a range of reasons given to the scores of people with ME/CFS who are rejected from the scheme. Some reasons relate to outdated research that suggested Cognitive Behaviour Therapy and Graduated Exercise Therapy would make them better; making them ineligible under the criteria of ‘permanence’. Others find themselves caught up in the stigma and misconception of medical professionals who misdiagnose them with Conversion Disorder or Somatic Symptom Disorder. If all the symptoms experienced by a person with ME/CFS are described in either the International Consensus Primer or the Canadian Consensus Criteria, then they will not meet the criteria for Conversion. But approximately 80% of people with ME/CFS are women, who for centuries have had their physical symptoms disregarded as mental illness. In addition to advocacy efforts to have ME/CFS added to List B of the NDIS, Senator Steele-John spoke about aims to continue working with his colleague Senator Rachel Siewert to reform the Administrative Appeals Tribunal to improve its fairness and reasonableness in NDIS appeals. He also spoke about the relationship between the AAT and abusive behaviour towards people with ME/CFS, which may mean it falls in the remit of the Royal Commission into violence and abuse of people with disabilities, the terms of reference for which are due to be finalised before the election.

Senator Steele-John’s efforts to support the ME/CFS community are commendable. It is a source of great hope that he has been able to expand on the good work undertaken by his predecessor Senator Ludlam and bring his entire party on board to work for the improvement of the lives of people living with this debilitating commission. He is facing a tough re-election campaign, facing off against candidates from the One Nation party. We can only hope that the good people of Western Australia get out to support his campaign and vote him back into the Senate in May so he can continue his invaluable work for Australians with disabilities, including those living with ME/CFS.

Parliamentarians learn about ground-breaking science on debilitating neurological disease

In parliament house in Canberra yesterday, members of federal parliament took the time to listen to world renowned scientists and their ground-breaking findings that explain the debilitating disease myalgic encephalomyelitis, a type of chronic fatigue syndrome. The event focused on a presentation by Griffith University Professors Don Staines and Sonya Marshall-Gradisnik.

The turnout was particularly impressive given the leadership turmoils occupying the headlines and the minds of so many people working in the building. Jokes were made at the beginning and end of the event, confirming that Malcom Turnbull was still the Prime Minister.

The event was hosted by the new Parliamentary Friends of ME/CFS, founded by Greens Senator for Western Australia, Jordon Steele-John and co-chaired by Labor Senator for Queensland, Claire Moore and Liberal Senator for Tasmania Jonathon Duniam.

A range of parliamentarians from across the political spectrum, in both the House of Representatives and the Senate attended, as did policy advisors, members of the academic community, patients and advocates.

Senators Andrew Bartlett, Greens for Queensland; Slade Brockman, Liberal for Western Australia; Jonathon Duniam, Liberal for Tasmania; Jordon Steele-John, Greens for Western Australia; and Claire Moore, Labor for Queensland all attended.

From the House of Representatives, Liberal Member for Dunkley, Chris Crewther; and Labor Member for Canberra, Gai Brodtmann attended. Up to a dozen policy advisors attended from a range of parliamentary officers.

Jordon Steele-John welcomed everyone to the event. Jonathon Duniam introduced the speakers. Don Staines began Griffith’s presentation with some poignant insights into why their research mattered. “It is an honour to present to the representatives of the people, our novel scientific findings” he said. ME/CFS is “a very silent illness, because people are often unable to represent their needs”.

In unpacking the approach of the National Centre for Neuroimmunology and Emerging Diseases, he explained that “the existing science is not yet up to it.” “Patients have experienced extreme stigma and discrimination associated with the lack of known biology”. The aim of the centre’s work was to reduce this stigma by demonstrating the biology of the disease, developing a diagnostic test and identifying therapeutic drugs to manage the disease. He spoke plainly and eloquently for all to understand the gravity of what he was saying.

Sonya Marshall-Gradisnik went through a summary of all the research they have done in three years, explaining what and how they have come to understand the pathology of the disease.

First, they identified a family of genes significantly associated with the disease. Then, they tested these genes, the family of TRPM3 markers, for changes in expression between healthy controls and patients with ME. This gene is found in cells in the central nervous, cardiovascular, digestive, endocrine, immune and excretory and other systems in the body. In this way, they came to understand how so many systems in the body are affected by the disease.

What they found was that the cells containing TRPM3 showed a reduced capacity for the transfer of calcium ions between and within the cells. Calcium ions are vital to cellular energy transfer and proper cell function.

By using gold standard technological processes, they measured the amount of calcium that is stored by and circulated in particular cells. Again, in ME patients, these rates were significantly lower than in healthy controls. This science would explain why many patients describe their experiences as like running on a faulty cellphone battery that doesn’t charge properly and never fully recharges.

TRPM3 are threat receptors. They are triggered by infections (bacterial or viral), perfumes or other chemicals, cell stretching or stress, temperature variation and a range of other factors. This not only explains some of the onset factors for ME, but also some of the triggers patients experience after contracting the disease.

Don Staines explained that, given these findings, we could see that “recommendations to exercise patients are wrong” because it only places greater demand for calcium ions in the cells. This also explains why patients who meet the diagnostic criteria defined in the Canadian Consensus Criteria or the International Consensus Primer would in fact be worsened by a regime of Graduated Exercise Therapy. While patients who experienced the symptom of chronic fatigue without meeting these criteria may experience some improvement.

As for recommendations to treat patients with Cognitive Behaviour Therapy, Sonya Marshall-Gradisnik said she was “not aware of any psychological treatment that can effect calcium ion transmitters”.

Attendees were keen to know what policy makers could do to help researchers and patients. The sample sizes of the studies undertaking so far were about 200 people. To allow all Australian patients to contribute to the study (and vastly increase the value of the science by increasing the sample size), the centre will need $13 million. So far, they have raised half of this money through philanthropic donations. They asked the parliamentarians to support federal government funding for the remaining $6.5 million.

Recommendations also came to ensure government policies and guidelines are updated to account for this research, helping reduce the personal, financial and social burden of the disease on patients. While no specific mention was made of the National Disability Insurance Scheme or Disability Support Pension, ongoing discussions will address some of these issues. There was, however, an explicit call to remove GET and CBT recommendations from policies including guidelines of the Royal Australian College of General Practitioners.

While Don and Sonya were loathe to provide timelines on their advances for diagnostic testing and therapeutic drugs, they explained they were working with a leading Australian pathology service provider with a timeline of three years for both projects.

At the end of proceedings Claire Moore closed the event with a call to action for policy makers while paying tribute to the good work that Scott Ludlum had done in this space. Significant networking between parliamentarians, policy advisors, other researchers and patients occurred before everyone dispersed. Overall, it was an incredibly worthwhile event and impressively successful, especially given the amount of attention being diverted for leadership contentions within the government.

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.

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.

Letter to Stella Young

Today I am grieving the loss of a great Australian. Many of us are. It was with great sadness that I heard of the unexpected death of Stella Young. In a tribute piece published today, Stella’s friend and one of my favourite writers, Clementine Ford said with perfect eloquence “she spearheaded a conversation in this country about the dignity and autonomy of disabled people, whom she always maintained were truly disadvantaged not by their bodies or conditions but by a society which insisted on marginalising them.”

I kind of knew Stella in high school. I spent some time at Stawell Secondary College while she was there. I was a few years behind Stella, but I saw her around, and chatted to her a few times. I was mostly too scared to say much, I’d gone through some tough times and was pretty reserved during that time of my life. But she stood out from the crowd, with a personality that demanded to be noticed. We had friends in common. I was very glad to see her rise in prominence for her opinion, comedy and advocacy. I think she was Stawell’s greatest daughter. In 2012, when I first got sick, I wanted to tell her what her advocacy meant to me. So I wrote her a letter. Today, I find myself wanting to share that letter with you all.

 

19 May 2012

Dear Stella,

I have always been in favour of a National Disability Insurance Scheme. But recently, I have gained a new insight into its importance.

As a child, I always had people around me with some kind of disability. The family I grew up with included a young boy with Down syndrome, my primary school was fully integrated and my Girl Guide unit included young people with disabilities. In primary school, I grew up with friends who were deaf, had learning disabilities, and one who was in a wheel chair. I knew and loved them for who they were, and (within the bounds of my young but curious understanding) always tried to be supportive and understanding of their needs and aspirations. When I moved away from Melbourne in my mid teens, I spent six months at school in country Victoria. In Stawell, along with the rest of the community, I was struck by your determination, positivity and productivity in any endeavour you undertook. I have been joyed to see you clearly articulate issues around disability rights and the NDIS in the national media.

Recently, I began suffering neurological symptoms that have been very frightening. The first of these came on very suddenly and left me totally immobile. I was struggling to maintain consciousness and communication was very difficult. Admitted to hospital, I was glad to see my immobility begin to leave, but weakness in my legs remained. This has continued to occur to me intermittently. It is not only a terrifying experience, to become so vulnerable, but I also struggled a great deal with my own dignity. I remember struggling with a bed pan two times in one night, till the nurses said they would put a catheter in me. I was so angry and frustrated, thinking I would soon improve, and be able to use the toilet, if I only I were given the chance. Eventually, I got the hang of it. But found the whole experience terribly undignified, being left alone with urine all over my butt cheeks. I recognise and understand the amount of work a nurse has to do, and mean to pass no judgement there, but mean to merely articulate the importance of supporting those less able in the most dignified manner possible. On one occasion I was able to inform the nurse that I was losing the ability to move and was then left totally alone for three hours with no one to even check if I had choked on my tongue, let alone offer a simple reassurance of another’s company. I was once told to simply walk down the hallway to the nurses station. On another occasion, I was told to swallow my pills, despite the fact that I wasn’t able to move. I remember being stranded in the toilet, with nothing but the smell of my own faeces for 20 minutes awaiting help to get up, flush, and return to my bed. Or having a nurse call a wardsman to help me to the toilet, despite the fact that I needed help pulling my underpants down.

Put simply, while I have always understood the truly basic notion of the dignity of people with a disability, and have supported dignified constructive and tailored support for people with disabilities, I have a new found appreciation. I want to thank you for your longstanding contributions to advocacy and support for young people and people with disabilities. I look forward to those moments when such work pays off.

Thank you kindly.

Sincerely

Susan