“I had no concept of what any of that would mean, but I just held onto those goals,” says Steele, who can now boast a remarkable 13-year swimming career, with the titles of Paralympian and gold medalist under her belt. 

“We forget that we have this power within us to decide what it is that we want to have in our lives,” says Steele.

Connecting to this power from a young age, Steele won her first gold medal in competitive swimming at just 14. Then, at age 17, she represented Australia for the first time at the 2000 Sydney Paralympics in the 400-metre freestyle, breaking a national record. 

Steele was born with a congenital disability called Arthrogryposis, which affects the range of motion in the joints and impacts the cartilage in the body. She also developed Amniotic band syndrome (ABS) in the womb, affecting the shape of both her hands. 

“Sport has been everything,” says Steele. “It has shaped me. It has shaped how I react to things, and how I have managed my disability.”

“We create our own reality,” she says. 

“Things are always going to happen in your life, but it’s how you react to those things. And so when I was a kid – and when I was early in my swimming career – I would react in a way that was like a victim because the world was telling me I was a victim. But then I realised I could change that narrative and go ‘well, you might see me like that, but I don’t see myself like that’.”

Throughout her swimming career, Steele has represented Australia internationally five times, including at the 2000 Sydney Paralympics. She’s also been captain of a number of Aussie swimming teams and held a Victorian Institute of Sport scholarship for eight years. 

After swimming, Steele took up wheelchair rugby. She was the only woman to be selected to play for Victoria at a national level. 

Today, Steele is an award-winning sportswoman, experienced personal coach and motivational speaker, who works in the personal development space as The Self Belief Agent. 

She’s also the Project Manager for the ‘Building Inclusive Sport Clubs’ program to promote the access and inclusion of people with disabilities in sporting clubs across Australia, working with Disability Sport Australia.

Recently, Steele was selected by the Office for Women in Sport and Recreation to become a Change Our Game ambassador. Steele is joined by seven other inspiring women in this movement to raise awareness on key issues in women’s sport. 

Steele is using this advocacy platform to create equitable change for all people with disabilities in sport. 

Emphasising the importance of her role with the Change Our Game movement, Steele says she’s proud that she and the other ambassadors have a direct opportunity to help other people feel the positive, life-changing aspects of sport that they’ve experienced. 

She says they’re able to do this “by breaking down inclusion and access issues and being able to share our expertise and make it easier for people to access the sports that they want to play.”

Looking back at her own sporting career, Steele can see clearly the changes she wished had been in place when she was competing at such a high level. These are the changes she’s working to implement for the next generation. 

And while there are some days where this change might feel impossible, Steele remains optimistic about the future.

“There are going to be days when you feel like you’re hitting your head against a brick wall,” she says. “And on those days, you just need to go for a walk or a swim in the ocean.”

“We’re not going to change the world in 24 hours because there’s so many different ways that people view women and sport and disability.” 

“We’ve all got our own perceptions or ideals of how people are meant to behave, but sometimes we need to put them aside for a bit so we can learn from other people,” she adds. 

“It’s okay if you just go, and take a deep breath, and start again.”

Change Our Game Ambassadors are using their platforms to help drive change and raise awareness on key issues and barriers for women in sport. Change Our Game is led by the Office of Women in Sport and Recreation to level the playing field for women and girls. Be sure to follow the Ambassadors’ journeys through @ChangeOurGame on socials.

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While there were very apparent barriers for Deaf men to participate in the sport, Hale would often watch them join local cricket clubs through their fathers, brothers, uncles and other support systems. 

For over 140 years, there had always been Deaf men’s cricket competitions– nationally, internationally and locally, in Victoria. The same couldn’t be said for women. 

“Deaf and hard of hearing men had so many more opportunities to enjoy the game, but also enjoy the camaraderie of being a part of a team, developing their cricket families and homes away from home,” says Hale. 

That’s why, at a Cricket Australia meeting in 2018, Hale brought up the possibility of creating a Deaf women’s competition.

“The staff member looked at me for a second and said ‘well, if you can get two teams up, we will put on an exhibition match’,” Hale recounts about the pivotal moment in her advocacy journey. 

“Within 48 hours, the Deaf community had come together, formed two teams, and changed the lives of many Deaf women and girls across Australia,” she says.

It was the first Deaf women’s cricket competition in Australia. Now, there are three fully formed Deaf women’s cricket teams playing for their states at the National Cricket Inclusion Championships in Brisbane in Marchant Park, and Hale says at least half of these women play regular cricket. 

“I feel really strongly about the phrase ‘You can’t be what you can’t see’,” says Hale.  “It is important that people with lived experience lead in the spaces that affect them.  Only they know intimately how being a person with that experience affects their lives and how they experience the world around them.”

As a proud Deaf woman herself, Hale has been leading and driving change through Deaf cricket for years. Most recently, she was selected as a Change Our Game ambassador to shine a light on the need for accessibility of Deaf women in sport. 

Hale is one of eight inspiring women chosen by the Office for Women in Sport and Recreation for the Change Our Game movement. It raises awareness on key issues through the platform between now and International Women’s Day 2024.

One of the biggest messages Hale is working to elevate is that not everyone is starting from the same place – a point particularly relevant to Deaf and hard of hearing women and girls.

“From my experiences in cricket, women and girls are only in recent times getting access to the game through their clubs in their own teams in safe and inclusive environments.”

“For Deaf and hard of hearing women and girls, many have never had the opportunity to pick up a ball or bat or understand the rules because of the double disadvantage they have had,” she says noting that it can often be hard for these players to “fit in and communicate effectively at local cricket clubs”.

“It’s for these reasons that we cannot have the same expectations and apply the same rules of men’s cricket to a group that is only just starting out. We need to pivot and adjust to fit,” she says. “This doesn’t make women’s and girls’ sports less deserving, important or exciting – it’s just a different starting point.”

Hale also says that while she feels a great responsibility to open doors for Deaf and hard of hearing women and girls, she cannot speak for everyone’s different lived experiences.

“Leadership for me means capturing as many voices of Deaf and hard of hearing people that I can, and elevating them all as equally as I can, by stepping out of the way, and opening the doors to let others lead,” she says.

What this really comes down to, Hale says, is having empathy and understanding that we all “have a deep human need to belong”. 

“We need to ask ourselves: ‘Are we doing things the way that we have always done them, just because it’s the ‘rules’, or are there truly things that we can adjust in our sports to make them more inclusive of everyone?’,” she says.

“Sometimes the smallest adjustments can make the biggest difference to inclusion.”

Between now and International Women’s Day 2024, Change Our Game Ambassadors will use their platform to help drive change and raising awareness on key issues and barriers for women in sport. The Change Our Game series is put on by the Office of Women in Sport and Recreation. Be sure to follow the Ambassadors’ journeys through @ChangeOurGame on socials.

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Launched in 2016 by Australian social entrepreneur Mandy Richards, Global Sisters supports women to achieve financial independence through a scalable and efficient model, creating income streams via self-employment when mainstream employment is inaccessible.

The organisation has so far supported over 5,500 women and facilitated more than $7.6 million in pro bono business support to emerging women-led micro businesses, according to Richards. 

The grant money from Google.org will enable Global Sisters to further their impact by rolling out a three-year pilot program designed to create flexible and sustainable jobs for women with disabilities who face barriers to employment. 

Richards said the funding “will enable more women living with a disability to participate in our  lifecycle of business support, so they can access all they need to start and grow their micro business, and embark on the path to financial independence.”

“Women with a disability and those who are permanent carers for people with a disability are frequently marginalised from mainstream employment due to structural, systemic barriers or are in low-paid employment.”

“The overall aim will be for each of these women to establish a micro business that generates a sustainable income for themselves,” said Richards.

One in six Australians are reported to have a disability, according to the Australian Institute’s 2022 Health and Wellness report. 

Out of this population with disabilities, research from the University of New South Wales (UNSW) shows that women make up half of the people but represent just over a third of the National Disability Insurance Scheme (NDIS) recipients.

The UNSW research shows this is because women are more likely to be diagnosed with disabilities that restrict their ability to receive disability payments through NDIS, such as fibromyalgia and chronic fatigue syndrome. Women are also more likely to take on part-time and low-paid work, making it harder to qualify. 

Through their model, Richards said that Global Sisters has developed a solution to break this cycle of exclusion and poverty experienced by many women with disabilities. 

“Our model equips women with confidence, skills, community connections, business networks, coaching, and flexible income necessary to foster economic participation and achieve financial independence over time that would otherwise be inaccessible via mainstream employment, “says Richards, adding that Globals Sisters is grateful that Google.org has seen potential in this model and supporting their demonstration project.

According to the Global Sisters’ 2022 Impact Report, 72 per cent of women enrolled in the Global Sisters’ program have achieved a business income after six months or more.

“Our intention is to increase accessibility and business as a genuine possibility for women with disabilities,” said Richards. It is also part of our broader systems change initiative with three demonstration projects, with specific cohorts of women, to provide critical impact evidence to create permanent welfare policy changes that will support women into self-employment.”

“Global Sisters aspires to transform the social system into a safety net rather than quicksand entrenching poverty. This demonstration project is a critical step in this mission.”

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She crossed the finish line with the time of 1:31:11. It was five seconds after American Susannah Scaroni, making this the third time De Rozario has taken the podium at the world’s oldest annual marathon. 

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In both 2019 and 2022, De Rozario finished third in Boston behind Scaroni. 

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An Australian athlete has yet to claim gold at Boston since Louise Sauvage did it for her fourth time in 2001. 

Having trained under Sauvage, De Rozario last year told the ABC that “Louise is my coach but she’s also someone who has probably had the biggest impact in making me the athlete that I am”. 

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Regarded as one of Australia’s greatest athletes, de Rozario was just 14 when she won her first Paralympics medal as part of the Women’s T53/54 4x100m relay in Beijing in 2008.

She was the first Australian athlete to win four gold medals in any Para sport at the Commonwealth Games and, in 2021, she was the first Australian woman to win the New York City Marathon. Nine of her 20 medals are gold.

Determined to use her platform to influence change even outside of sport, Rozario advocates for authentic diversity in society, with a specific focus on people with disability. 

This led her to win Athlete of the Year in 2022, beating an impressive lineup of athletes, including Ash Barty, Jess Fox, Emma McKeon, Sam Kerr and Tia-Clair Toomey.

During her acceptance speech for the award, de Rozario said: “For women’s sport, I couldn’t be more proud of every athlete in this room.”

“I think we get to use this platform to do something that’s so much more important than racing or running a play. We’re all doing that, and to be part of that right now, we’re jumping through hoops right now and those that come after us aren’t going to have to do that.”

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That’s why disabilities community organiser Steve Bear created Alvie, the country’s first social platform uniquely designed for people who live with disabilities. The app aims to connect those living with disabilities with like-minded people who share similar life experiences, interests and hobbies, facilitating relationships and enriching friendships. 

For Bear, the app’s central purpose is providing emotional assistance — especially from loneliness. 

“From my experience of working with many children with all kinds of disabilities, I understand that loneliness and isolation is one of the biggest challenges these kids face on a day-to-day, and can lead to lack of personal and social development, as well as an increased risk of mental illness,” he said. 

“Building Alvie was an opportunity to give people with disabilities at any age, a safe space created specifically for them, where they can feel comfortable, accepted for who they are and experience more social interactions that will hopefully form into meaningful friendships.”

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With Alvie, the algorithm has been engineered to match members based on their age, location, interests, and hobbies, and will enable online, one-on-one conversations if both members accept.

“There are so many interests to choose from, including NRL, AFL, movies, cooking, art, PlayStation, X-Box, online gaming, playing cards or even just eating out with friends,” Bear said. 

“Alvie’s aim is to match people with a disability who have similar interests and hobbies, so they can easily connect, make meaningful friendships and make the most out of life.” 

The app also provides assistance with facilitating in person meet-ups, and has several measures installed to prevent bullying, harassment, abuse or misuse of the app. 

With Alvie, all members are required to have an Australian police check before they can be officially registered. The app also allows a support worker, guardian or parent linked to a member’s account.

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“We’re doing everything we can to make it as safe as we can make it,” Bear recently told Pro Bono. 

“A lot of the time the participant, the member of Alvie [is not] aware of what is totally inappropriate, so that’s why it’s not an automatic suspension or deletion of your account, because we’re going to use it also as a tool to help the socialisation and understanding [of] what is appropriate and what is inappropriate at different times,” he said. 

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The app is NDIS friendly, which means the $120 annual membership fee can be claimed through NDIS for NDIS Core funds or Community Participants. You can sign up here. 

Correction: An earlier version of this article named Jerusha Mather as an Ambassador of Alvie. Mather is not an Ambassador of Alvie.

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Sixty-five percent of Australian women and girls with disabilities have experienced some sort of violence. They are also twice as likely to experience physical and sexual violence compared to women and girls without disabilities. 

The study, from violence against women and children national prevention agency, Our Watch and Women with Disabilities Victoria, revealed that ableist ideas such as the belief that women and girls with disabilities are ‘vulnerable’, ‘incapable,’ or ‘child-like’, alongside sexist attitudes, are contributing to the high rates of violence and abuse experienced by women and girls with disabilities.  

The study is part of a new 108-page resource, Changing the Landscape, launched today, that showed a combination of gender inequality and ableism exists across all aspects of society, including in the workplace, schools, at medical and disability services, governments and communities. 

Our Watch CEO Patty Kinnersly believes that changing these confronting figures can only happen if everyone contributes to stopping violence before perpetrators inflict harm on women and girls with disabilities. 

“This is not a problem just for the disability community, it is everyone’s problem, and we all must be part of the solution, to end this pervasive and unacceptable abuse,” she said in a statement. 

“Violence against women and girls with disabilities is not perpetrated by a ‘few bad apples,’ it looks like street harassment, controlling behaviours by paid and unpaid carers, doctors and policy-makers taking away reproductive choices, and institutional violence.” 

“The evidence shows that by addressing sexist and ableist attitudes, practices and structures we can stop violence against women and girls with disabilities before it starts.” 

“It means challenging ableist attitudes, such as the belief women and girls with disabilities need to be protected or excusing a carer’s abuse because they are ‘burnt-out.”  

“It means workplaces championing equality and increasing the number of women with disabilities in leadership roles, schools being accessible and inclusive, and media amplifying the voices and stories of women and girls with disabilities.” 

“This is not just about ending the high rates of violence against women and girls with disabilities, but also about building a society where all women are valued, respected and have equal rights and opportunities,” Kinnersly added. 

“Negative stereotypes, assumptions and attitudes about people with disabilities can directly contribute to, and motivate, the perpetration of violence against this group,” report read. 

2015 Young Australian of the Year, Drisana Levitzke-Gray, told The Daily Liberal she has experienced exclusion due to her deafness and gender.

“At university a lecturer believed that because I was deaf I wasn’t able to read or write English,” the 29-year old said. “I had to reassure them that I was accepted into the course for a reason: I could do the work.” 

The Perth-based disability rights campaigner said that often, people without disabilities believed themselves to have good intentions, but that their pity and assumptions of protection may cause harm. 

“Women with disabilities want to make their own choices, but often they are being made for us.”

Nadia Mattiazzo, CEO of Women with Disabilities Victoria said the resource was created after intensive consultation with people from across the country who shared their stories.    

“Violence and discrimination are huge experiences in our lives,” she said. “That is why our organisation has dedicated attention to preventing them.” 

“It is a reminder how disability and gender discrimination impact every part of this country and take many forms, especially when they combine with colonisation, racism and other forms of discrimination. “ 

She added that her organisation is pleased to be advancing the need for a national focus alongside Our Watch.

“We are hopeful to see government and community service action spring from this resource.”  

The resource is included as a recommendation for the Disability Royal Commission and part of Our Watch’s submission into the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, which is due for release by September 2023. 

In Australia, one in five people have some form of disability. Among the female population, roughly 18 percent have one or more form of disability.

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Alarming statistics relating to the experiences of women with disability have been heard at The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

Kate Eastman, the senior counsel assisting the royal commission, told the inquiry that women with disability are disproportionately experiencing domestic violence in Australia.

“Women with disability make up around 20 per cent of the total Australian population but they are nearly half of all domestic violence victim survivors. The most common perpetrator of violence against women with disability is a former partner,” Eastman said.

“Women with disability are twice as likely to experience sexual violence over a one-year period compared to women without disability.”

The inquiry heard that 90 per cent of women with intellectual disability have experienced sexual abuse, with 68 per cent being subjected to this abuse before they reach the age of 18.

The experiences of Indigenous women with disability are even more pronounced, according to Thelma Schwartz, principal legal officer at QLD Indigenous Family Violence Legal Service. Schwartz said it is at a “national crisis level”. The inquiry heard that Indigenous women are 34  times more likely than non-Indigenous women to be hospitalised due to family and domestic violence.

It was also heard that women with disability are often not believed when they report abuse, with Kate Eastman saying there are issues with trusting police due to previous negative experiences.

“Women with disability have told the Royal Commission about their lack of trust in police following negative interactions when reporting or attempting to report sexual assault or domestic violence,” Eastman said.

In 2016, the cost of violence against women with disability was estimated as $1.7 billion. The hearing also looked at the sexual and reproductive rights of women and girls with disability, and the gaps in legal protections and services.

Jen Hargrave, Senior Policy Officer at Women with Disabilities Victoria, said there is a gap when it comes to developing policies relating to women with disability in Australia.

“We are often popped in one paragraph, or one dot point, or increasingly told that policies take an intersectional lens, and that it should be trusted this will include particular drivers around ableism,” Hargrave told the hearing.

“One of things we still don’t see happening is really constructive cross portfolio discussions around women’s policy and disability policy, and other relevant policies.”

If you or someone you know needs to contact family and domestic violence support services, you can reach the 1800 Respect National Helpline on 1800 737 732.

The Women’s Crisis Line can be reached at 1800 811 811 and the Men’s Referral Service on 1300 766 491.

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That’s according to new research from the Queensland University of Technology that was commissioned by the eSafety Commissioner Julie Inman Grant. The study included interviews and focus groups with women with intellectual or cognitive disability who had experienced technology-facilitated abuse, and the frontline domestic violence workers who support them.

The researchers heard that perpetrators of technology-facilitated abuse often place GPS trackers and recording devices on wheelchairs and cars, tamper with hearing aids and other assistive devices, use smart home technology to control household devices like lights, misuse social media accounts and send unsolicited images on dating apps. The abusive behaviour experienced by women with cognitive and intellectual disability typically involves harassment, coercion, and manipulation, with the abuse often specifically targeted to exploit a woman’s disability.

Associate Professor Bridget Harris, one of the lead researchers, told Women’s Agenda she wasn’t surprised by the findings about how technology is being used to isolate, coerce, manipulate and harass women with cognitive and intellectual disability.

“But I was alarmed with just how silenced and overlooked women with cognitive and intellectual disabilities are, and we should be alarmed about this,” she said.

“We’re fortunate to have The eSafety Commissioner providing resources to assist women and frontline workers and to have incredible disability and domestic violence sectors working in this space. But we need to do better.

“Social media platforms and telecommunication agencies can and should be better at preventing and responding to tech abuse. And justice systems can definitely be bolstered; women and workers talked about a lack of knowledge and unwillingness to address harms and the need for more awareness about disability and tech abuse and training in the police.”

The pool of potential domestic abusers for women with cognitive and intellectual disability is wider than for women without disability, and often extends beyond partners and ex partners, to family members including parents, children, and siblings, carers, strangers and even support service providers.

“Frontline workers also reported that those who assist women may gain access to technologies under the guise of ‘helping’ them, and gain control of accounts and devices, leaving them open to exploitation,” Associate Professor Harris said.

Sometimes, a woman’s experience of technology-facilitated abuse becomes complicated because her abuser may also be her partner and her carer. In the study, frontline workers said that women in these kinds of abusive situations are often told that if it weren’t for their partner, they would not keep custody of their children.

Women also reported fear as a primary barrier in seeking help for technology-facilitated abuse.

“Women, and also the disability and domestic violence support workers we spoke with, talked about their fears of not being believed when they were help-seeking, and unfortunately, they encounter this all too often,” Associate Professor Harris said.

“Women with cognitive or intellectual disabilities can encounter misconceptions, stereotypes and assumptions about their capabilities, their trustworthiness. Women may also fear losing access to their children, and unfortunately, we know that there is an increased risk of this happening, even if they are the target of abuse.”

The research revealed that women with cognitive and intellectual disability use technology in their lives in important ways – from connecting with family and friends, to accessing support services. Some women in the study reported they were afraid to continue their regular use of technology when they became affected by technology-facilitated abuse. Others said they chose to continue using social media – potentially risking more abuse – because they wanted to maintain their social connection with others.

Resources have been developed by the eSafety Commissioner to better support frontline workers to assist women with disability to seek out help when they need it. These resources include videos, wallet cards, posters and conversation starters.

“I encourage disability support workers to watch these videos and then potentially watch them together with people they support,” Julie Inman Grant said.  

“Women with intellectual or cognitive disability rely on technology for social connection,  modern-day conveniences and entertainment and it’s vital they are supported when abuse occurs so they can continue to use technology in positive ways.” 

If you or someone you know needs help, you can call the 1800 Respect National Helpline on 1800 737 732. In an emergency, call 000.

You can also reach the Men’s Referral Service on 1300 766 491.

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The research, which is the largest study of maternal outcomes for women with disabilities in Canadian history, shines a spotlight on the urgent need for improved pregnancy guidelines for women with disabilities, as well as services that consider accessibility related needs.

Researchers looked at health record data from 220,000 women with physical, sensory, and intellectual or developmental disabilities, as well as 1.6 million women without disabilities, who gave birth over a 15-year period between 2003 and 2018.

Over this period, the study found that there were 14 maternal deaths per 100,000 births among women with disabilities, compared to 8 in 100,000 among women without disabilities. Women with multiple disabilities were also at double the risk for negative pregnancy outcomes compared to women without disabilities.

Hilary Brown, lead researcher on the study and an Assistant Professor in the Department of Health and Society at University of Toronto, said social factors like barriers to employment, education, stable housing and access to health care, and medical factors, like higher incidence of chronic disease, can result in negative pregnancy outcomes for women with disabilities.

Brown also said that after accounting for these social and medical factors, there are still disparities between outcomes for women with and without disabilities, and that there are not enough obstetric programs for women with disabilities in Canada.

“Pregnancy guidelines specific to the needs of Canadian women with disabilities do not currently exist, and there are few obstetric programs created with the needs of women with disabilities in mind,” says Brown.

Pregnancy rates for women with disabilities have risen over the past 20 years in Canada; they now account for nearly one in eight births.

“At the same time, health-care guidelines in Canada on how to best provide pregnancy-related care to these women has not improved,” says Brown. “Women with disabilities are more likely than their peers to experience social and medical risk factors, but until now rates of life-threatening pregnancy complications or maternal death among this group have been relatively unknown.”

Brown points to a lack of pre-conception programs tailored to meet the needs of women with disabilities, and inadequate disability-related training for obstetrical health care providers. Meanwhile, stigma and discrimination still impede access to adequate healthcare for pregnant women with disabilities.

“Many of the mothers with disabilities that we talk to have faced discriminatory attitudes about their pregnancies, and it needs to change,” Brown said.

“Society is shifting to better allow women with disabilities to become pregnant and be mothers. It’s time for us to address how disability shapes access to health care and how it interacts with other risk factors like poverty to ensure that these life-threatening pregnancy complications and maternal death rates are reduced.” 

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Mish lives with disabilities and multiple health challenges, among her diagnoses are level 2 Autism, Spondyloarthritis, Fibromyalgia, ME/CFS and suspected Ehlers Danlos. She is also the full-time carer for her children, three of whom are on the autism spectrum.

Mish’s need for physical isolation from the outside world this year has meant that much of the existing support she received to help with her caring duties had to be cut or moved online. Mish says that she’s been experiencing extreme burnout, with the intensity of her challenges this year piling up to an overwhelming degree.

“I’ve found lockdown has greatly exacerbated my personal difficulties and has made everything so much more challenging for me,” she told Women’s Agenda recently. “Burnout has left me with even less energy than I usually have, and makes even the smallest task feel insurmountable at times.”

Reaching a crisis point after the sudden passing of her mother, Mish reached out to the government funded Carer Gateway for support.

She found it to be straightforward and supportive and has since received emotional and practical support – everything from counselling sessions to meal deliveries and a new laptop. It was just what she needed to be able to cope with her exhaustive caring load and breathe just that little bit easier.

“We do such an important role in providing care, receiving support doesn’t make us weak, it enables us to be stronger and be even better in our roles as carers,” she said.

Below, Mish was generous enough to share with Women’s Agenda what the past nine months has been like for her, and also offers some very on point advice for other carers who may also be feeling like they’re reaching their own crisis point.

How has some of the practical support you’ve now received enhanced your quality of life this year?

This year has been particularly challenging for my family. Being immunocompromised, lockdown in Melbourne lasted for a full 9 months for us as I’m in the high-risk category. That meant all the usual supports we access for my son via his NDIS plan had to be cancelled or moved to being online.

This put the full weight of everyone’s needs back onto my shoulders, which is extremely difficult. Even more so when I’m bedridden 2-3 days a week.

Having meals delivered had a huge impact for me. Instead of the daily dinner battle on top of everything else, I was able to “heat and eat”, removing what is one of my most challenging daily tasks. The end of the day is when I’m most in pain and exhausted, so I’m extremely grateful for not having to worry about that for several weeks.

The laptop was a huge game changer in so many ways. I’d been trying to do everything on my phone as my desktop computer is 15 years old and just can’t do what I need any longer. Now, I can access everything I need quickly and simply – and actually see what I’m doing more clearly.

It has also enabled me to access my digital art once more. I haven’t been able to create art in a long time, and being able to do so helps me cope enormously. I’m so excited to be able to create artworks again!

What advice would you give to other carers who may feel like they are reaching a crisis point and are not sure who to turn to?

Accessing supports can feel overwhelming and scary. Often we have a fear of being judged for struggling, or even a fear of having our kids taken away due to not being able to do everything ourselves. Our load as carers is much higher, and much heavier than the average family – it’s easy to lose sight of this.

Agencies such as the Carer Gateway are there to help, not judge. It is so worth pushing through it all to do that *one more thing* in contacting them. I didn’t think I could manage it as I felt so overwhelmed, but making it happen was worth the energy I spent in doing so as it eased the pressure for several months, which let me breathe and cope better.

If you can’t reach out yourself, have a friend or family member make that first call on your behalf. If you can’t call, email. In the long run, that small amount of additional stress will ease the weight on you and give you the chance to recuperate, improving your ability to care for yourself and your loved one/s you care for.

We do such an important role in providing care, receiving support doesn’t make us weak, it enables us to be stronger and be even better in our roles as carers.

Burnout has been an issue for many people during the pandemic, but for carers – especially those in lockdown for long periods of time – the demands have ongoing and intense. Have you personally dealt with burnout this year?

I’ve had, and am still dealing with extreme burnout currently. As a carer who also has disabilities, this year has been particularly difficult and exhausting.  Amongst my diagnoses are level 2 Autism, Spondyloarthrities, Fibromyalgia, ME/CFS and suspected Ehlers Danlos. I’ve found lockdown has greatly exacerbated my personal difficulties and has made everything so much more challenging for me. Burnout has left me with even less energy than I usually have, and makes even the smallest task feel insurmountable at times.

In the middle of lockdown, my Mother passed away which was even more challenging as she passed in NSW. Being in VIC, I wasn’t allowed to see her in hospital to say goodbye or attend the funeral. That had an enormous effect on me, sending me spiralling downwards, barely making it through each day. It’s something I am still dealing with but I’d have been in an even worse position if not for the counselling sessions Carer Gateway provided for me, they’ve made all the difference in enabling me to continue on every day.

If you manage to muster any extra energy and/or time, what are some things you like to do to take care of yourself?

I can’t always go out due to my disabilities, so the things I do to take care of myself are simple things. I make sure to sit and enjoy my coffee every day, instead of drinking it on the run. I try to participate in carer activities when I’m able to as these give me a break and contact with other people.

I’m an avid reader, but don’t often have time to read so I switched to audibooks, meaning I can listen to books even if I can’t sit to read them. It’s really helpful to be able to skip back a chapter if I realise I haven’t heard it properly due to kids or whatever I’m doing at the time. It also makes doing mundane tasks more enjoyable.

I love to create my digital artworks, and to spend time in my garden. Recently, I even managed to do some sewing – something I haven’t done in years. That was a huge accomplishment and felt so good to do.

What would you like other people to know about what it takes to be a full-time carer?

Being a full-time carer is something you can’t ever fully understand unless you live it. On top of all the usual demands of life and caring for a family, you have so much else to do. I have to get my kids to 5+ therapy appointments a week. I have to ensure the right child is ready for each one, liaise with the therapists and keep them in the loop about how things are going and ensure we get regular reports written for the NDIS. I have to keep support worker schedules working so they don’t clash with appointments, and keep track of every child’s needs, medications, etc as well as trying to remember my own.

We have regular trips to the hospital – last week’s trip involved paramedics, my 20-year-old being in a neck brace for 9 hours, scans for suspected neck and head injuries due to multiple collapses, anxiety and worry about if their spine could be broken, and me being awake for 28 hours straight. When we were finally able to go home, I had to get straight back into caring for my youngest child and ensuring he made it to his appointments as well as doing his schoolwork. The trip before this, my 20-year-old was unconscious for 45mins after collapsing & woke in the ambulance where they had a massive panic attack as they didn’t know where they were. It’s frightening and takes a toll in a big way on all of us. 

People think having NDIS makes life a breeze – I’ve often had comments like “Oh, I wish I had a cleaner” made to me, as if it’s unfair we can access one. I’d give up having a cleaner for the simplicity of normal life in a heartbeat! Having the cleaner coming to our home doesn’t mean I get to sit and do nothing – it means I have a little more energy to put into caring for my kids, providing for their needs and trying to keep on top of the endless requirements that are piled on me every day. 

People don’t see the endless paperwork, the chasing invoices, dealing with billing, ensuring we have the right reports for reviews and more that is involved to enable our kids or loved ones to be supported.

The having to repeat our story endlessly to worker after worker, re-training new workers to know how to provide support appropriately. Sourcing equipment that matches our kids needs, ensuring we have the right products on hand at all times.

They have no idea of the frustration and stress of not being able to find accessible parking and trying to help our loved one access a wheelchair in a standard parking spot where we can’t get the chair to their car door or having to go home without doing what we wanted/needed to do as there’s no accessibility for the wheelchair after parking.  The 20+ extra steps it takes just to head out the door. In my case, ensuring I’m on high alert to catch my 20-year-old every time they collapse, even in a wheelchair, so they don’t hit their head on the ground yet again. Trying to catch them in a way that won’t injure me or tear my ligaments yet again.

People judge harshly if they see the meltdowns, the struggles and the challenges that come with having kids with disabilities, yet so little is done to try to understand their needs and what we as carers are trying to do to enable our loved ones to have a life of value and happiness.

Being on high alert because you know someone will be horrid and judgmental every time you take your kids in public is exhausting. Living being devalued yourself while fighting against your loved one being devalued is a never ending battle. Dealing every single day with people who refuse to provide accessible communication or services.

The level of care and energy we put into helping our loved one process and access life and cope day-to-day is far beyond anything the average parent or individual faces. 

If you know someone who is a carer, support them. Love them. Offer to help or give them a break, it just may be the difference between making it through the week or falling in a messy heap. We put on a brave face and hide our struggles, but I promise you they’re there even if you can’t see it. 

The post Mish Baker spent 9 months in lockdown with kids. She urges more unpaid carers to seek support, and everyone else to love & support them appeared first on Women's Agenda.

Everyone needs a girl gang. In real life, I’m lucky to be surrounded by a group of courageous, intelligent, funny women who can deliver the right dose of honesty, feistiness and care.

But I also have dream girl gangs. You know, the women you most admire who would give you the advice and solutions you need to take over the world. Women like Michelle Obama… Ok, at the moment, I could just stop at Michelle Obama – with her in your corner would you need anyone else in your life?

But in all seriousness, I love it when a great group of women succeed – and are celebrated – together.

Which is why I was so excited when the Daily Life’s 2016 Women of the Year finalist list appeared on my news feed last night. As I began to scroll I was thrilled to see so many champion women: the fierce, intelligent and witty Anne Aly; the kind-hearted and honest Noni Hazlehurst and the laugh-until you cry writer Constance Hall.

I will never forget watching Linda Burney address a small dinner crowd of mostly young Indigenous kids when I was just 19. The way she spoke to those young men and women about staying true to their values and the need to keep pushing on despite the setbacks before them gave me goose bumps.

There’s no doubt that the ten women featured are truly remarkable. But as I scrolled to the end of the list, I couldn’t help but feel let down. I felt, once again, that women like me hadn’t made the cut, and when I say women like me, I mean women with disabilities.

Now let me be clear – my disappointment isn’t directed at Daily Life or the ten women who made the shortlist. My disappointment lies in the fact that this list, for the most part, accurately showcases the women whom we have paid attention to in 2016. The list says something about who we celebrate and value – and who we don’t. Which is why the lack of representation of women with disabilities is so jarring.

There can only be two reasons for the lack of representation of women with disabilities. Firstly, that there are no women with disabilities who are achieving at a high enough level to be worthy of a top ten spot. Let me call crap on that argument; to begin with, 2016 was a Paralympic year, so even if we were only to look at athletes, there was a smorgasbord of choices.

Did you know Paralympic sailor Liesl Tech won a gold medal in sailing for Australia in Rio, following her gold medal win for the same event in London? Oh, and London followed five previous Paralympics (Barcelona 1992, Atlanta 1996, Sydney 2000, Athens 2004, Beijing 2008) where Liesl competed in an entirely different sport – Wheelchair Basketball, winning three medals for Australia. On top of all that, in 2010, she co-founded Sports Matters, a charity that promotes sport for people with disabilities in developing countries. Plus, anyone who has met Liesl knows she’s the life of any party with her infectious laugh and positive attitude.

So the problem isn’t that these women don’t exist – the problem is, you don’t know about them. To be frank – I don’t even know about that many of them – and I’m disabled. If you take out athletes and the Paralympics, I could count the number of disabled women achieving high-profile success in their chosen field on one hand. How can that be? How can I be so ignorant?

I think it comes down to the fact we don’t talk about them, we don’t see them, so we don’t know about them. I don’t know about you, but I feel like when it comes to disability awareness and a platform for our stories (again, particularly for women), we are going backwards.

Some of that (but clearly not all) is connected to the death of Stella Young. A high-profile writer with disabilities who had an uncanny ability to say exactly what I was thinking or how I was feeling – but in a way that made everyone laugh. Her humour made the uncomfortable issues she was raising relatable and easy to digest for disabled and non-disabled alike. She started conversations that broke down barriers. But how did we even get to the stage where we were largely relying on one (remarkable) woman to advocate and shine a light on our issues in the media?

And if there are others, why don’t I know about them? We’ve lost our platform and I for one want it back. So how do we build a louder – more diverse – collective voice that cannot be ignored? There are probably many great ideas out there. We just need to share them and back each other up. Promote each other and not wait for others to notice us. We need our own girl gang.

The post ‘What a list of women we celebrate says to women like me’ appeared first on Women's Agenda.