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.

Local hero succumbs to skin cancer

Max Hutchinson

Max Hutchinson was a Sydney boy, but he moved to Tasmania when he was 20, married a Burnie girl and never looked back. He fell in love in 1952, built a family and spent a lifetime supporting them and the Tasmanian community.

He spent hours under the sun as a member and Club Captain of the Burnie Surf Lifesaving Club. He was also State Surf Lifesaving Superintendent and was privileged to attend the 1956 Olympics as part of the demonstration team. Later in life, his passion for surf Lifesaving was taken up by several of his grandchildren.

When the family moved to Strahan, Max threw himself into community life of the small town. He was a stringer for the ABC, a Scout master, Captain of the Rural Fire Service and a member of the Strahan Marine Board.

After seeing how painful unamicable divorces can be for children, Max and his wife Beth, helped establish Roland Children’s Services to create contact centres for families going through separations. These centres provided safe places for children and their families to meet while going through problematic separations.

Its possible Max is most widely known for his work with Rotary and the Burnie Agricultural and Pastoral Society. He joined Rotary in 1971, becoming President of the Rotary Club of East Burnie from 1981-1982. He was Assistant District Governor from 1999-2000 and was awarded a Paul Harris fellow. Max has variously been Treasurer, President, Life Member and Patron of the show society since 1971.

Max was a man of faith and contributed to his church community too. He was a regular congregant at, St George’s, the Anglican church in which he was married. During the 1990’s he was a member of the Anglican Church in Tasmania’s Diocesan Council and Treasurer.

In 2008 he was awarded the OAM for services to Burnie through social-welfare, agricultural, service and business organisations.

He led an incredibly fulsome life, packed with adventure and laughter. He travelled around Australia and visited the UK, Europe, New Zealand, Papua New Guinea, Mexico and the USA. There wasn’t much he didn’t have a go at. He even went bungee jumping when he was in his 60’s.

He was an incredibly loving husband, supportive father, proud grandfather and great grandfather. He leaves behind his wife: Beth; three children: Douglas, Richard, Dianne;  grandchildren: David, Susan, Luke, Josh, Tess, Sarah and Emily; great grandchildren: Jordin, Jaylee, Layla, Fray, Koby, Harper, Jasper, and Brody; and his little companion Molly.

Max died from complications from metastatic skin cancer, a reminder of the impact of cumulative exposure to harmful UV rays. His funeral will be held on Thursday 19th March at 2pm at Vincent’s Parklands Chapel, 113 Bass Highway. It will also be livestreamed for those who are unable to attend.

The beauty of Tootsie

Tonight was a very special night for me. I went to the launch of the Kennedy Award, an exhibition of paintings, finalists in a competition with the theme of beauty. The idea was to take the theme beyond the superficial.

It was special night for me, because I was in the exhibition, the subject of a painting over a meter tall painted by the wonderful Marieka Hambledon. Being painted by her was a wonderful experience. I would have loved for us to win. But we didn’t and both of us were overjoyed. We were overjoyed because the painting that won is incredible. It was called ‘Tootsie, just an Old Drag Queen’.

Today was also wear it purple day, an annual awareness day for LGBTQI people. In Australia, young LGBTQI people are five times more likely to attempt suicide and twice as likely to engage I self-harm compared to the general population.

Tootsie, the subject of the winning painting, was 20 years old when he was imprisoned just for being gay. When the judges announced the award, they said you could almost smell the subject. It’s true. Though Tootsie is smoking one cigarette, the artist tells us he was in fact a chain smoker and the haze almost sits in the room with him, with his lipstick smeared coffee cup.

But why we were so happy this painting won over ours is because there is an incredible beauty in Tootsie and his story, so vivid on the canvas, eyeshadow still on his frail skin. There is beauty in this tale that is so different than those on magazine covers or billboards. That beauty is well worth the prestigious Kennedy Award of $25,000. And may that beauty be a lesson to us all.

Australian company arms Saudi government department responsible for gender based violence

This week, the 104 countries that have signed up to the Arms Trade Treaty will be gathering for their annual meeting in Geneva. This year, their discussions will focus on gender-based violence.

Both the ABC and the Guardian recently published photos of shipments of weapons systems from an Australian manufacturer being shipped directly to the government of Saudi Arabia. The weapons systems were sold to the Ministry of Interior, the government department responsible for quashing public dissent and women’s rights.

Picture of a package label departing Sydney Airport.

Label of item for shipping at Sydney International Airport (Photo supplied by Gulf Institute for Democracy and Human Rights)

This sale breeches our obligations under the international Arms Trade Treaty. The Arms Trade Treaty is supposed to stop the sale of weapons to countries responsible for significant human rights breeches.

The Ministry of Interior is in charge of the police, courts and prisons that are all responsible for gender-based violence. They are also largely responsible for implementing the guardianship system that requires women to obtain permission from a male guardian to travel abroad, obtain a passport, or be discharged from prison.

Australian advocates for women’s rights who were at the UN for negotiations of the Arms Trade Treaty were part of the effort include gender provisions in the treaty. The aim of the activists was to help gender based violence by ending the export of the weapons used to facilitate that violence.

Ray Acheson was a leader in those negotiations. She is the Director of the Reaching Critical Will campaign of the Women’s International League for Peace and Freedom. They’ve been working on disarmament issues for over a century.

The legally binding clause of the treaty authorisation of exports must consider if they will “facilitate serious acts of gender-based violence.” Acheson said “Saudi Arabia is a known violator of women’s rights and LGBT rights. The risks of gender based violence inside Saudi Arabia are high.”

Indeed, a 2013 law supposed to reduce domestic abuse still allows male guardians to persistently abuse women. Male relatives are also able to bring legal claims against ‘disobedient’ female dependents who flee domestic violence. Human Rights Watch has documented cases where police have turned women away when they sought to report abuse.

Earlier this year, the male guardianship system returned to the Australian news when Rahaf al-Qunun’s attempted to flee to Australia, escaping her family due to fears for her life. The Ministry of Interior maintains an extensive intelligence network and special police force that has been used to prevent and punish such attempts to break free from the guardianship system.

Over the past twelve months, various elements of the Ministry of Interior have undertaken a campaign of arrests, imprisoning and torturing women’s human rights defenders. Women including Eman Al-Nafjan, Loujain al-Hathloul, Aziza al-Yousef and Samar Badawi were among a dozen leading activists arrested after the ban on women driving was lifted in May last year. Each of them were reportedly tortured while in custody.

The Saudi Arabian public prosecutor’s office had announced that the group undertook “coordinated activity to undermine the security, stability and social peace of the kingdom.” These security related charges could bring sentences of up to 20 years imprisonment. In reality, the women used social media to speak up about women’s rights in the country.

The UN Committee on the Elimination of All Forms of Discrimination against Women has called on the Saudi government to “ensure that women activists are able to exercise their right to freedom of expression and association” and that counter-terrorism law, the anti-cybercrime law and regulations for electronic publishing are not used to “abusively to criminalize women human rights defenders.”

The Australian Government needs to use this opportunity to re-examine its processes for authorising arms exports in accordance with the Arms Trade Treaty.

UN readies for another resolution while Australia stands in the way of ending impunity for wartime rape

The UN Security Council is in the process of developing a new resolution on Women, Peace and Security. The resolution has been anticipated for several months and is due to be passed as part of the Council’s annual open debate on conflict related sexual violence which is due to be held in New York on Tuesday. An Arria formula meeting was held earlier in the year to prepare council members for the debate, with a particular focus on ending impunity for conflict related sexual violence. Conflict related sexual violence is the focus of four of the existing eight resolutions on women, peace and security. But even the Council has bemoaned the lack of prosecutions for these crimes.

Nobel Laureate Nadia Murad will address the Council during the Open Debate. She has spoken out time and again for justice for survivors from her community who experienced sexual violence as war crimes, crimes against humanity and genocide at the hands of Da’esh in Syria and Iraq. For all the times the international community has shone a spotlight on her tears, we have still failed to do what she asks.

Germany, the current President of the Security Council and chair of this week’s debate is the only country to put a member of Da’esh on trial for any of these gendered crimes. But tens of thousands of foreign fighters travelled from countries around the world and committed these crimes. Many of those foreign fighters come from countries that are States Parties to the Rome Statute of the International Criminal Court and are therefore obliged to investigate and prosecute these crimes in their own court systems.

Both houses of Australia’s Federal Parliament passed multi-party motions calling for the investigation and prosecution of Australians who may have perpetrated sexual violence as war crimes, crimes against humanity and genocide. Several federal ministers have reinforced this obligation. These ministers have included Julie Bishop as Foreign Minister, Peter Dutton as Minister for Home Affairs and Linda Reynolds as Assistant Minister for Home Affairs.

Despite this, the government has failed to implement the strategies required to make such investigations and prosecutions are reality and they have invested energy into policies and legislation which prevent such action. Chapter eight of the Commonwealth Criminal Code clearly articulates the crimes that are laid out in the Rome Statute and ensures that Australian authorities have jurisdiction over such offences even when they are perpetrated overseas, against victims from another country. But this legislation has never been tested in court. The Australian Federal Police require the funding and other resources to stand up unit dedicated to such investigations. No such funding was made available in the latest federal budget.

In order for these prosecutions to occur, the perpetrator must be in federal custody. But the government has pursued a range of legislative and policy processes removing this probability. Given the parliament passed legislation allowing the government to revoke the citizenship of anyone who travelled to Iraq or Syria to join Da’esh, the government was obliged to include an administrative step determining if such individuals perpetrated war crimes, crimes against humanity or genocide before making a determination about citizenship revocation. The citizenship review board that advices the Minister for Home Affairs on such matters has apparently continued to fail to account for such obligations. Now, over a dozen individuals, some of whom are known to have perpetrated heinous crimes against women have had their citizenship revoked, further reducing the likelihood that their victims will see the justice they so rightly deserve.

There is a group of Yazidi women who are fighting for access to support services under Australia’s victims of human trafficking schemes. These women were purchased by an Australian man, for the purpose of sexual slavery, and repeatedly sexually and violently abused. Under Australia’s own criminal laws, those women count as victims of human trafficking, modern slavery, war crimes, crimes against humanity and genocide. But rather than allow them justice, the government revoked the citizenship of their abuser. If they so choose, they could bring a case against the Commonwealth for failure to uphold their obligations under the Rome Statute. Their country of residence, or any other country of interest could take Australia to the International Court of Justice for failing to fulfil our obligations under the Convention on the Prevention and Punishment of the Crime of Genocide.

Early in the new year, the government tried to go even further, seeking legislative changes that would allow them to revoke the citizenship of even more people, and enforcing Temporary Exclusion Orders to delay Australians of counter-terrorism interest from re-entering Australia. This is yet another policy that would prevent the arrest or detention of individuals responsible for conflict related sexual violence.

At the Arria formula meeting earlier in the year, civil society presenter Akila Radhakrishnan from the Global Justice Centre said achieving accountability for conflict related sexual violence “requires more than just eloquent rhetoric; it will require Council members to take concrete action and display considerable political will. Sexual and gender-based violence is, at its core, an expression of discrimination, patriarchy and inequality.” Countries like Australia must stop getting in the way of justice and follow up the global rhetoric with the actual action required to end impunity for conflict related sexual violence. We must investigate and prosecute these crimes now!

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.

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/

Ford v Kavanaugh

The following is a guest blog post from my friend and human rights campaigner, Daniel Yeow. 

Yesterday’s hearings have never been a clearer message that women’s opinions are worth less than men’s. Ford’s memory was continually questioned, while Kavanaugh’s was not. His belligerence was never called out. Her character was constantly attacked.

A thorough FBI investigation would have, while time-consuming, resolved this in a manner respectful of the truth. The choice by the GOP to turn this into political theatre has turned it into an extremely undignified race to the bottom. What little chance remained that Kavanaugh could credibly claim to be an appropriate candidate for the supreme court has now vanished.

They accuse her of politically motivated false accusations, when statistically it is more likely for a man to be sexually assaulted than to be falsely accused of it. Rushing the confirmation of the candidate, after yesterday’s farce, proves that it is in fact the republicans who are acting out of political motivation – putting party and ideology ahead of country and due process.

Pragmatically, the judiciary committee is pushing to vote to recommend the candidate, which will probably happen. Then the senate has to confirm.

What the GOP needs to realise is that, even though they can ‘win’ with their 51-49 majority, yesterday’s political theatre, paired with Trump’s low approval ratings mean that putting Kavanaugh on the supreme court could spell long-term electoral disaster (and in the short-term, even the possibility for a filibuster-proof 2/3 majority for democrats). Confirming the candidate would be the end of the political careers of many GOP senators. On the other hand, crossing the aisle and voting against the party will, in this insane-mobster political environment, result in similar career-ending repercussions.

So for a decent number of senate republicans, they have to make a decision on what will likely be the last thing they do in their political careers. I can’t predict what they will do, but I hope they at least have a conscience which includes women as equals, despite the strong messaging from others in their party.

P.S. I should probably also add that I believe her and not him. Not that that matters. What people are forgetting is that this isn’t a criminal case. This is essentially a job interview. The question isn’t “did Kav try to rape?”, it is “is this guy appropriate material for the supreme court”, and he clearly isn’t.