“Wheeling to inspirational half way milestone”
“Don’t judge me by my disability but give me an opportunity to show my ability. I hope I can communicate to people that anything is possible if you put your mind to it and are given an opportunity.”
That’s the message shared by Bravery Trek participant Talia Spooner-Stewart as she passes the halfway milestone of this year’s Bravery Trek.
Bravery Trek is a virtual challenge of 100km in 50 days. Talia is halfway to her goal having clocked up 55km as she enters the home stretch.
“I’ve been fortunate to have so much support from family, friends, my work colleagues, and my physio team along the way. Everyone has been incredibly generous and it’s given me extra motivation to be consistent– I’m just so grateful for everyone’s support. The support pushes me to keep going,” she said.
Talia was diagnosed with MS in 1998 and became wheelchair reliant five years ago. She says it was the opportunity to attend the Invictus Games in 2018 as a volunteer that inspired her to aim high and finds ways to continue sports and stay active.
“The Invictus Games changed everything. It was an eye-opener to what could be done. I had always thought “No, I can’t do that because I am in a wheelchair”– but the Invictus Games changed that, it changed my mindset to focus on what I can do instead,” she said.
Talia has been cycling and wheeling her way to 100km and she’s been able to add weekly swimming sessions to her tally. Although not a veteran herself, Talia works at Leidos Australia with veterans as colleagues and customers. Leidos is a Foundation Partner of Bravery Trek and values a culture to support those who have served our country.
“Leidos’ commitment to the veteran community, and a key value of inclusion, is why I went to the Invictus Games in the first place – they were able to offer me that opportunity. Leidos is why I’m participating in Bravery Trek … I’ve had a few really big donations and it has surprised me. I really do appreciate everyone’s support,” Talia said.
“I don’t ask others for help very often but this event is so important and the messaging to support veterans is so important.
“As a community we are generous, and people support lots of charities, but the messaging about veterans can get lost in that. They have made the bravest sacrifice to support our freedom and we can all do more to support veterans when they need some assistance.”
A quick check of Talia’s socials shows that she’s been bombarded with messages of support, and there’s repeated use of the word “inspirational” by her supporters – it’s something she accepts with humility.
“If my actions can inspire others I’ll embrace it – and knowing the impact that the Invictus Games had on me, if my efforts can help change people’s mindsets and empower them to live a better life – I’m fine with whatever words they call me – as long as it helps others!”
To donate or send a message of support to Talia please visit: www.braverytrek.com.au/talia-spooner-stewart.
Funds raised support the work of national military charity Bravery Trust to provide financial aid and financial counselling to veterans who been injured during service and face hardship. Learn more at www.braverytrust.org.au.
Elle Steele is a PDA Member and former PDA Board Member.
She is also an incredible woman with many more strings to her bow. As a Paralympian, successful businesswoman, motivational speaker, disability advocate and a supportive, beautiful soul, she has much knowledge, insight and advice to share. Well worth a listen.
She has very kindly allowed us to share a video that she was involved with on the PDA YouTube channel.
Check it out by clicking below or by going to: https://www.youtube.com/watch?v=k8H5uwzUY4k
Don’t forget to subscribe to the PDA YouTube channel whilst you’re there.
REFLECT
Covid 19 has absolutely shattered our world reality. None of us were prepared for the virus that not only took lives, (currently around 4 and a half million worldwide) but stole our lifestyles and forced us to lockdown, to vaccinate and to learn new skills like social distancing, hand sanitising and checking in to just about everywhere we go to protect the ones we love.
Australia thus far has done exceptionally in adapting to this new lifestyle and containing this virus. Very few of us in Tasmania have been personally effected by death from this insidious disease but we have been affected by systems and procedures that lack access to a cohort of our society.
That cohort is People with Disabilities.
Most of us here today know the marginalisation of people with disabilities in our society. Most of us here deal on a day to day basis in our organisations with people with disabilities. Yet, when COVID hit us in March 2020, No one in government was prepared with real understanding of the intricacies of the life of PWD and how covid would impact our lives and how we could be left behind, with no real planning for us leaving us precariously vulnerable.
In March 2020 I gave evidence at the Royal Commission into abuse and neglect of people with disabilities. My evidence was specific to how, as a person with a disability I was left vulnerable – as were many others who require the assistance of support workers to come into our homes on a daily basis to care for our basic needs. I gave evidence that I felt like my house was a potential COVID hotspot as my support workers and my husband’s aged care support came in and out of our home daily. We could only trust that they were doing the right thing to protect their vulnerable clients.
Reflect on how you would feel if this was you?
Fast forward to the vaccine roll out which started in Tasmania in early March.
The booking system.
How do you think the online booking system has played out for People with disabilities and the wider Tasmanian community with functional literacy rates of 49%? That’s 49% of people who function in the world of reading and writing well enough to navigate our systems. This excludes peoples who are computer literate which is a whole other ball game as we know.
Go to your GP you say? Well not all towns and rural regional areas had a roll out of GP’s who were willing to vaccinate their patients.
Can you see the gaps here? Can you see a pattern?
Bureaucracy has a real disconnect it seems with the implementation of systems and the people that use them. The most vulnerable don’t seem to be at the forefront of the thought process in this process.
Speaking from personal experience, I rang the booking line and took the next available appointment for a vaccine which was 100km from my home, a trip I took for both jabs. My daughter had to drive from Hobart to Launceston to get her first jab. We have mobility, we have cars, we have cash for petrol and we can navigate the system – but still it was arduous for us.
Reflect on this and how your clients may be impacted with the same story?
Now I’m no wilting flower when it comes to asking questions and finding out information. Back in March I rang the health department to see when PWD were scheduled to get a vaccine. How would ‘they’, those shadowy bureaucrats that are closeted in offices in tall buildings tasked with serving and protecting, how would ‘they’ know that I belonged to 1B? They didn’t know and I was fobbed off by someone who said the NDIS would be letting me know. So I rang the NDIS of course and was told by the NDIS that they had no jurisdiction in this matter and it was up to the state health department to implement procedures and the circle of buck passing went on and on.
It was only in late-June-early-July that dedicated Disability vaccine clinics were opened in Hobart and Launceston – but not in regional or rural Tasmania.
The messaging to the vulnerable, the real people of Tasmania, the elderly, the disabled has been very sparse, in some cases it’s like we have been totally overlooked in planning for the vaccine rollout – just as we were at beginning off the outbreak with support workers, PPE and isolation and protection.
ADAPT
It is said that, people with disabilities are often good problem solvers, thinking outside the box and creating solutions to problems that may not be apparent to others.
We know our own situations, we know our risks, we know our capacities and we are the best experts on our situations. We need to always be at the forefront of managements and bureaucracy when policy and systems are rolled out! 4.4 million people live with disability in Australia today. That’s a huge amount of adaptability. That’s a huge cohort of our Australian population. We need to be having our voices in the places where policy and systems are rolled out.
THRIVE
PWD are not here to blame and shame government and agencies for things that are not right, we are here to team with and be advisors with government and agencies. We are large stakeholders in our community and our own lives and we need to be listened to and be heard. We are going to have to live with Covid for a long time to come and to thrive we are going to have to work together. So my treaty here is for those at the top, in those shadowy offices, in tall buildings, to talk to, listen and hear PWD.
To adapt and thrive we need to be valued as experts in our own field which is disability and be heard, our lives depend on it!
As a person with a disability, I create a fair bit of rubbish. Items such as gloves and incontinence products cannot be helped, and I am not going to start limiting the use of those. I like to focus on what I can control and reduce that as much as possible. Waste is a huge issue that you can no longer ignore, leave for someone else to deal with or put in the too-hard basket. I like to think that my actions can inspire others, that their actions will inspire others and, before you know it, thousands of people are doing it and it is having a positive impact on the environment.
I started paying attention to my waste when I moved into a brand new home in 2015. I needed some art to cover the boring green fences that three of my windows face. Buying brand new, weather-resistant art was not appealing due to the cost. I thought about doing mosaics, but didn’t want to break any plates or buy special tools or materials. So I started collecting bottle tops. Family and friends also gave me theirs and I was able to use ones of all shapes, sizes, colours and materials from milk, juice, beer, wine, soft drink and even lids off beauty products. I now collect anything useful, like can ring-pulls, plastic straws, corks and the small coloured silicone things you find in bottles of tablets to prevent moisture. They do rust and fade in the weather, but I like the effect it has. And I can easily and cheaply replace them if I wanted.
Not long after I started my recycled art, I read about Plastic Free July. It challenged me to pick one plastic item to reduce for the month. I picked plastic bin liners for my kitchen bin and replaced it with newspaper! It forced me to focus on what I was putting in my bin. With newspaper as a bin liner, I couldn’t put wet, gross stuff in it or I’d be washing the bin every week. Who wants to do that? So I started keeping a container for scraps in the fridge. I was giving these scraps to friends with worm farms, compost or bokashi bins (or the odd stranger from the Share Waste site!), but lately I’ve been taking it to a local community garden or burying it in my back yard for the earthworms to take care of. Eggshells and tea leaves are great for the garden, so I always keep them in a separate container on my bench for my plants. I wish I lived in an area that has a FOGO (or three bin system) bin collection. It would be more convenient, but you cannot always trust that council will do the right thing with it.
I have since done courses on living smart and reducing waste. That one act of lining my kitchen bin with newspaper has led to many other changes at home. I now:
There are probably many more things that I could be doing, and I plan to add to this list as often as possible. But it is what I can comfortably manage for now. If you would like to start, or do more, consider these points:
Looking after the environment is a shared responsibility. If we all do as much as we can, it will go a long way to ensuring a brighter future for everyone.
Good luck!
⚠️ TRIGGER WARNING. This article discusses suicidal feelings.
This week, as part of Mental Health Week, PDA’s TAS Associate Director Tammy Milne, was a speaker at the North West Film Society.
Her honest, heartfelt, poignant and incredibly brave speech took the audience on an emotional journey that shows that no one is vaccinated against the black dog of depression.
Tammy has very kindly allowed us to publish her words and her story and we are extremely grateful to this wonderful, kind and courageous woman for normalising depression and giving a voice and hope to others who may have similar journeys.
“I would like to acknowledge the country in which we are all meeting tonight.
This is Palawa country in lutruwita on the land of the punnalir.planner people. I acknowledge and pay respect to Aboriginal people as the traditional and original owners, and continuing custodians of the lands on which we all gather today and acknowledge Elders – past and present and emerging.
Thank you everyone who has come along tonight to hear this very poignant discussion for mental health week and thank you for the opportunity to share my story and the story of 1000s of other people with disabilities all over.
As you are well aware I’m a person living with disability. I want to talk this evening about intersectionality. How disability and other conditions are not mutually exclusive. How we don’t often think of people with disability and Breast cancer, or people with disabilities and cardiovascular disease or people with disabilities and mental health. Why is that? Because PWD seem to take up space in our minds, as a particular group that’s in our minds don’t move outside that sphere or silo.
We compartmentalised disabilities and PWD as one diagnosis and don’t think more broadly of other issues, like mental health that can accompany person with disability on their life journey.
But statistics inform us that 32% of people living with disability experience high or very high psychological distress compared to 8% with out disability. Another study found that 43% sufferer psychological distress in conjunction with their disability. So if you look at the way society treats people with disability, our society, here in Australia you will be able to understand why PWD have high rates of depression compared with the wider community. We are often treated with fear, people don’t know what to expect with interacting with us , we are ignored, we are pityed , feel shame and are most often treated as less then the rest of the community.
A really great show to watch on telly and is on SBS. Its called Australia what does Australia really think of disability with Kurt Fearnely . Its an eye opener. From the show a survey was collected and
72% of respondents without disabilities said they felt sorry for people with a disability.
72% agreed that people sometimes make fun of people with disability.
So what Im saying here and what the statistics confirm is there is no wonder PWD suffer from depression!
My own story is a winding journey and the cumulative effects of all the things already spoken about.
I was a fire Cracker ready to go off. I had internalised all the trauma of disability and the discrimination, the personal attacks, the pain that I had suffered all my life and in 2018 i exploded.
In a quiet, under the radar sort of way, that involved pills and a good long lay down that I hoped I would never wake from. I had had enough! The two years prior to this were tumultuous! I suffered a back injury at work and fractured three vertebrae in a fall.
The two year prior to my attempted long sleep looked like this! A catalyst of events that fused together in a nightmare scenario that I couldn’t dig my way out of. I hurt my back, went through the workers comp. trauma. I mean I wasn’t taken seriously because of my disability it took 6 weeks from the injury till I got an MRI that actually found the fractures,
And then I started a new job with a principal who wasn’t too keen on having a person with a disability thrust upon them by the department. I spiralled down down down into self doubt, every time I received any form of set back, Or criticism; constructive or not it felt like a body blow I felt worthless.
I went to a very nice doctor in Launceston and told him my story and he said quite frankly you have PTSD. What you have experienced, you have PTSD.
I still am hyper vigilant in my surrounding always looking for an exit if I need it. I have a very strong fight or flight response. Which looks like I get pissed off and leave but in reality it’s my coping mechanism to escape any further trauma by just leaving. I startle easily, I jump easily at any loud noise or sound
How did i start getting through it. Well I recognised that its me and it not me! Its not my fault that society see people with disabilities as unreliable witnesses to their own health needs. Its not my fault that people see people with disabilities as inferior. Its not my fault that the principal couldn’t see my value. Its not my fault that all people with disabilities are not valued. I am me and I embraced that. I embraced my disabilities. I still get discriminated against. Especially outside my home city and even in my city but I know its not my fault. It their problem!
But i can do something about it. I quit my job with the department of education last year after 33 years. I embraced disability. I’m now the Tasmanian associate director of physical disabilities Australia. I strive to make our city our Tasmania and more inclusive and equitable place for all. My work as I see it now is to make life better from now on for all people. That’s why I put my hand up to speak at events like this.
My take home message is that mental health should be treated like any other health condition, we get mammograms, paps smears, colonoscopy, prostrate checks, cardio vascular checks and mental health checks should be though of and treated no differently. Go to a councillor, seek out a psychologist.
Health is holistic; it’s mind and body.
Thank you again for allowing me to share.”
References:
https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/people-with-disability/prevalence-of-disability
📷 thanks to Vicki Carman-Brown
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I came across Physical Disability Australia while searching the web for activities and groups for people with a physical disability. During my search the PDA website was one of the options that came up. As I was reading the information on the PDA website, I noticed they were holding Social Hours once a fortnight using online video chat software known as Zoom and I decided the join the organisation and join these Social Hours.
PDA hold 2 social hours which includes a youth chat for under 30s and the general one. These social hours are open to all members of PDA. I decided to join the general chat. Pre-registration is required for the online chats. I took the plunge and signed up for my first social hour in June 2020. On joining my first one I felt rather nervous, but I was welcomed by the other regulars on the chat including Jonathon, Andrew, Liz and Natasha to name a few. Many topics are discussed including what we do, how we cope with life and to share some of our stories – both funny and not so funny.
The social hours helped me overcome some barriers during the 2020 COVID lockdown as I was stuck at home. All my regular activities had been cancelled including my Tenpin Bowling and the Men’s Shed. I live alone and, apart from one or two visits a week by support workers and therapists, my disability life can get extremely hard and lonely. Even though we have not met yet, I feel I have made some new friends through the PDA social hours. I counted down days every fortnight to join the next one.
I would like to invite all members of PDA to give it try. You may meet some old friends and make some new ones.
PDA Social hours are held on the first Monday every month at 7pm AEST.
For more information check out PDA’s Facebook page or email promotion@pda.org.au.
To register for a Social Hour go to:
https://us02web.zoom.us/meeting/register/tZYqc–qqjkjG903J2KoieI9ASVSig7b4mxr
Hope to see you at a Social Hour soon.
Krystal is a wearer of many hats and her ability shines through; but none are more important to her than setting a strong example for her family and advocating for others who are margalised and largely underestimated by mainstream society.
The 36 year old has worked for South Australia’s peak government social housing provider for over 10 years. This firmly places her in a position to help support people experiencing complex issues. In addition, she has developed programs to support and make service improvement to large-scale psychosocial community issues such as homelessness and Family and Domestic Violence.
Krystal was born with Cerebral Palsy and is a wheelchair user. Overcoming challenges and preconceived notations of what she was considered (by society) to be capable of, drove her determination to be respected for what she can do, rather than what people think she can’t, or shouldn’t do.
Krystal has 2 beautiful daughters, teaching people about equality, inclusion, and the beauty of diversity in society was intensified with motherhood. She is currently raising an energetic 2 year old toddler whilst in a wheelchair, which she reports as being both challenging and magical. Krystal enjoys spending time with family and friends, drinking a glass of wine and is a 90’s music tragic.
Krystal is determined to ensure the lived experience of people with a disability shapes the way services are created and delivered in the future. She is also passionate about education awareness and safeguarding the rights of people with a disability in future policy development and negotiations. Krystal wants all people with a disability to feel safe, confident and capable of achieving their goals. Krystal hopes that her professional experience in advocacy and development, combined with her lived experience and determination to make a difference, will help further positive changes for people living with disability.
Please join us in welcoming Krystal to PDA’s team.
1800 732 674
