Setting boundaries for the holiday season.

Written by Elle Steele – PDA VIC Director

Boundaries.

It’s a bit of a buzzword isn’t it? 

I remember hearing it from my psych. She said to me “Elle, you have no boundaries. This is why you feel the way you do. Let’s fix that.”

Even though I’d been an athlete for so long, boundaries had never really played a huge part in the lead-up and recovery from training or any major event, or so I thought. If I think back now, I probably was doing my fair share of it, but it all related back to swimming so it was never a holistic approach.

During the 13 years I was on the Australian team, I had colds, my nose was always running, I had dry skin and aches all over from pushing my body to the limit. But now, I’ve learnt to be a LOT more balanced in my ‘pushing’ with daily self-care practices in place so that I can at the very least get up the next day. For me, self-care and boundaries go hand in hand. I want to share some self-care tips with you for the end of year holidays. 

  1. Learn to say ‘no’. 
    Yep, I’m starting off with a big f..ing NO. You know why? You are worth more than doing the things you hate. You are worth more than hanging out with people who are toxic. And you are worth more than watching negative shows or anything that makes you feel anxious. The same goes for seeing people over the holiday period that you don’t feel so great around or doing things that make you feel uncomfortable. Just because you’ve always done something, doesn’t mean you have to keep doing it. 

  2. Don’t count your calories.
    Yep, I said it. Do.not.weigh.your.food.you.are.not.a.race.horse. Our bodies change all the time. Don’t hold yourself to something that was yesterday or could be in your future. Enjoy you now. Stop trying to be something else or have a different number on the scales. You’re doing amazing. I used to be 53kgs and I was never happy, I was sick all the time and my mindset was terrible. Now, I know I’m carrying some weight, but my insides, mind, and body are getting healthier every day and the most important thing is I love who I am, in the now, all of it. No amount of food weighing will make up for any lack of self-acceptance. Enjoy the food over the holidays and love yourself enough to eat what makes you feel good

  3. How you finish you year of work isn’t how it’s always going to be. Well, 2020 was fun wasn’t it? Remember, if you finished the year slightly ‘less than’ you’d hoped doesn’t mean squat. You’re on an adventure. You haven’t reached your final destination yet. Think 2021 is for creating connections. Creating content. Creating a life that you don’t need a holiday from. This includes having really strong boundaries for yourself in your life all year round. My advice to you is “always follow joy, in all that you do.”

  4. Self-care looks different to everyone.
    There is no right or wrong way to self-care or set boundaries. I was once told that resting my body and watching a movie wasn’t the ‘right’ way to do self-care. I’m sorry, who said it wasn’t? The self-care police? P.S If you’re still hanging with the self-care police, please refer to point 1).

  5. Take time out from all the noise at least once a day.
    Meditation comes in different forms, so you do “you”. Whatever feels best for you and allows you to switch off and breathe, this is the best way for you to meditate. This may evolve over time, but if it doesn’t then that’s also ok. Some days I meditate to silence. Some days I draw. Some nights I light candles, pump ancient drumming music and dance. Some days I swim. Some days I chant. Whatever makes you feel good is what’s best.

Now, go and do what makes you feel good over the holidays.  

Announcing PDA’s newly elected Executive Board

Following PDA’s successful and well attended AGM, elections were held for the Executive Board that saw the existing team returned to continue their great work.

Liz Reid * President
Talia Spooner-Stewart * Vice-President
Andrew Fairbairn * Vice-President
Jonathan Shar * Treasurer

Congratulations!

We would also like to thank all of our Members who joined us at last Saturday’s AGM. It was wonderful to see so many of you attend and we look forward to your involvement in the next 12 months and beyond.

2020 AGM – Saturday 5th December 2020

Tomorrow PDA will be holding its Annual General Meeting via Zoom and invites all its members to be involved.

To attend you will need to register in advance by going to:

https://us02web.zoom.us/meeting/register/tZEvdeqgqj8vHN2KTYutqbP2wIJ8oPNvfNXe

The PDA Board and Team would love you to join them to hear what they’ve been up to, what PDA has planned for the future and just to be part of the conversation.

3:30pm Sydney/Melbourne/Hobart/Canberra

3pm Adelaide

2:30pm Brisbane 

2pm Darwin

Congratulations to PDA’s Ambassador, Dr Dinesh Palipana OAM, on being named as QLD Australian of the Year 2021

At a ceremony in Brisbane earlier this month, QLD Premier Annastacia Palaszczuk announced that Dinesh had been named as QLD Australian of the Year 2021.

“Dr Dinesh Palipana knows no barriers,” the Premier said. “He is a truly inspiring person and a much-deserved recipient of the Queensland Australian of the Year Award. Dr Palipana was the first quadriplegic medical graduate and medical intern in Queensland and was also recently admitted as a lawyer. As co-founder of Doctors with Disabilities Australia, he helped create national policies for inclusivity in medical education and employment. He speaks, writes and advocates for the equitable treatment of people with a disability, and he has contributed significantly to the advancement of treating spinal cord injuries and restoring functions for people with paralysis. I warmly congratulate Dr Palipana as the Queensland Australian of the Year.”

We wish Dinesh all the best in the national Australia Day Awards in January.

Exploring Accessible Transport with physical disability and using an electric wheelchair

by Sharon Boyce – PDA QLD Director

Sharon Boyce is PDA’s QLD Director and well known and respected for her work in educating the public about disability inclusivity and awareness.

This video is about accessible transport and the way in which her much loved car has opened up her community, her options, her opportunities and her world.

To view please click below:

Creating a more connected Physical Disability community through the COVID-19 Pandemic

Written by Jonathan Shar

If we are to take anything positive out of the whole COVID-19 situation, I believe that we have become a more cohesive and united community through being brought together by platforms such as Zoom.

Whether through being involved in  PDA’s fun fortnightly Social Hours (see below for registration link) or doing therapies via Telehealth, we should be proud of the sense of belonging and community we are creating and hope to maintain when life returns to normal (hopefully sooner than we think).

As someone who at times has struggled with social isolation and longed to be a part of a community, when I do login to a Zoom chat or YouTube live stream I feel like I’ve almost come home because being around people that understand the challenges and triumphs of disability life is healing. 

In saying that, my main concern is how can we maintain this into the future. Will and should technology play a bigger role in how we include and embrace people with physical disabilities?

One thing I will be pushing for is for all organisations who work in the disability space to work more collaboratively. Whether you’re a service provider, part of a peak body or community group, we need to work together – regardless of how or who you’re funded by. 

This will enable better outcomes across the board for the disability community, the members and the very people we represent, because without them we are nothing. “Nothing about us without us” may be one of the most overused quotes in the disability rights movement but during these times I feel as though it has taken on a new meaning.

In the era of #BlackLivesMatter, #MeToo and the violence, abuse and neglect being uncovered by the Disability Royal Commission, one could assume the collective trauma from all three would foster divisions, however the opposite is being shown to be true.

It is a shame that it took the appalling abuse and callous neglect of Ann-Marie Smith to unite our community in a call to action. It’s important for us to channel our frustrations into something positive, instead of stoking divisions. Let’s make this an opportunity to strengthen disability rights and encourage politicians to truly put disability on their agendas – not for votes or popularity, but to truly bring about tangible reform.

If you too feel frustrated and passionate about this issue, I encourage you to use social media to start a conversation, talk/write to government agencies and leaders of disability services. Do not beome demoralised, by negative answers or lack of response. Simply continue to knock on doors and keep the conversation going. 

Together we are louder.

Join PDA, join one of our Social Hours, become part of the conversation and let’s work towards improving the lives of all Australians living with disability.

To join one of PDA’s fortnightly Zoom sessions (held on Mondays), please register at:

https://us02web.zoom.us/meeting/register/tZMvdeCvqT0iGNIHANOwSpCJDs6Yg_iN8tAo?fbclid=IwAR37vPFdtHijzzInqwjHDE8hWoC1DuIq5D2yYrSSR9fEzhXf1xxidmi7iZ8

Bullying in our public health system

Author’s name withheld on request

If someone was to ask me about my understanding of bullying, a few weeks ago I would have reflected on the time I bullied our workshop apprentice whilst the older men around us cheered and berated the poor guy.  Thank you for refusing to put up with my misguided anger Scooter, you were stronger than me at that time.

I may have also reflected on my children’s experience halfway through high school.  They were ostracised from their group of friends due to the boredom of a couple of kids and the belief of their parents that, if my children put up with it, it would resolve itself.

The last place I expected to be bullied though was in an Australian public hospital.

I best include a little information about myself so you can better understand the situation I have found myself in. I am in my early 40s and have been a high-level quadriplegic for the past 20 years. I have a severe pressure wound that has had me restricted to bed for the last eight months or so, 24/7. The chronic pain I have suffered since I got my disability has proven to be one of the biggest hurdles I’ve had to overcome. For the past eight months I have been experiencing bouts of a condition known as autonomic hyper dysreflexia – a potentially life-threatening medical emergency suffered by a small amount of spinal-cord injured people with symptoms that include high blood pressure, pounding headache, flushed face, sweating above the level of injury, goose flesh below the level of injury, nasal stuffiness, nausea, tachycardia and high blood pressure. I also had a soul crushing migraine that would make me wish that I was dead. 

One of the unfortunate facts about autonomic hyper dysreflexia is that it is misunderstood and practitioners do not typically have any knowledge of how to deal with it. For example, every time I was admitted into hospital I had five ward doctors standing around me uncertain as to what to do to relieve the situation. 

It had been decided by my nursing network and a number of health professionals who had been reviewing my wound progression in my home, that I must attend a hospital emergency department due to the high possibility that I may suffer an uncontrollable attack of this condition and die. I had my support worker pack a bag for me and I called an ambulance during the early evening.

As I was waiting to be processed and assigned to an appropriate ward so that I could receive appropriate treatment from a physician with some expertise in my illness, I was approach by an irate doctor swinging her arms around in an aggressive manner, trying her best to intimidate me and make me go home. 

She made it quite clear that I would not be getting any treatment on my wound through the hospital. She continued by asking me what I expected the hospital to do about my situation, to which I replied “I don’t know what you can do for me, I just know something needs to be done because I am not safe at home and I believe the hospital is the only place for me to be where an appropriate plan of action could be made.”

Unfortunately, as I have learnt over a 20 year period dealing with the public hospital system, this sort of response is not uncommon. The chronic health concerns of people with disability are deemed too hard to deal with and this is somehow my fault.

At that point I had to do what is the only course of action available to resist this form of bullying and intimidation: stand my ground. I refused to just go home and asserted my right to receive treatment for a life-threatening injury which eventually resulted in my being admitted to have my condition stabilised and assessed. I still have a way to go and I anticipate further battles to get my needs met.

I understand that hospital emergency departments are stressful places and that the Coronavirus pandemic has only increased the pressure felt by the people who work there. But this does not justify the mistreatment of people with needs that are different to the patients they typically deal with and we must not accept it.

Creating a more connected Physical Disability community through the COVID-19 Pandemic

Written by Jonathan Shar – PDA Treasurer/NSW Director

I don’t know about you but if we are to take anything positive out of the whole COVID-19 situation, it is through adversity I feel like using platforms like Zoom, we have become a more cohesive and united community.

Whether it be our PDA Social Hours (register at https://us02web.zoom.us/meeting/register/tZMvdeCvqT0iGNIHANOwSpCJDs6Yg_iN8tAo) or doing therapies using Telehealth, we should be proud of the sense of belonging and community we are creating and hope to maintain when life returns to normal (hopefully sooner than we think).

For me as someone who from time to time has struggled with social isolation and longed to be a part of a community, when I do login to a Zoom chat or YouTube live stream I feel like I’ve almost come home because being around people that understand the challenges and triumphs of disability life is healing. 

I guess in saying that, my main concern is how can we maintain this into the future. Will and should  technology  play a bigger role in how we include and embrace people with physical disabilities?

One thing I will be pushing for is for all organisations who work in the disability space to work more collaboratively, I personally don”t care whether you’re a peak body, service provider or community group, we need to work together regardless of how or who funds us. 

All that really drives us is better outcomes for the members and people we represent because without them we are nothing. Nothing about us without us may be one of the most overused quotes in the disability rights movement but during these times I feel as though it has taken on a new meaning.

In the era of #BlackLivesMatter, #MeToo and the violence, abuse and neglect being uncovered by the Disability Royal Commission, one could assume the collective trauma from all three would foster divisions, however the opposite is true.

It is a shame that it took the appalling abuse and callous neglect of Ann-Marie Smith to unite our community in a call to action, the point I am trying to make is let’s channel all of this frustration into something positive, instead of stoking divisions, let’s make this an opportunity to strengthen disability rights and to politicians with a disability, we want more than talk, we want action and tangible reform that will actually be implemented.

If you feel as frustrated and passionate about this issue, use social media to start a conversation, talk to leaders of disability services and government agencies – but if you get a negative answer don’t get demoralised.

At PDA we are here for you, remember to join us for Social Hour and even become a member.

The One-Legged Sax Player and his Journey to NDIS Home Modifications

Written by Andrew Fairbairn – PDA Vice-President/WA Director

Once upon a time there was a guy who was a left below knee amputee. 

In January 2019, he applied for, and was given access to the NDIS as a participant. He was very excited about this because he and others had lobbied hard for this Scheme.

In his first plan, built by an NDIA Planner who knew nothing about amputees,  he was given ample Capital Support Funding to provide a complete rebuild of his everyday prosthesis,  a brand new, complete fully water proof prosthesis and a very expensive custom wheelchair, complete with a set of off-road wheels and a free wheel device for him to use when he goes camping, which is one of his big goals.

He was given Capacity Building funds to employ an OT to do a full Functional Capacity Assessment. He went through this process and it was identified he needed to get a wheelchair and the new prosthetic limbs, among other things AT.

It was identified that in the next plan Home Modifications Capital Support funding should be asked for and granted as reasonable and necessary. The OT did all that was required of her with regards to documentation, photos and justifications for the next plan.

To say he was happy, is an understatement. He is working in the disability industry, is a passionate advocate and activist and a leader in the Amputee community. He knows the NDIS is very good for his community and continues, despite its flaws and failings, to promote it and extol its virtues.

In January 2020 he had a plan review asking for the Home Modification process to be started and asked for funds to start the process as was identified in the FCA completed in 2019.

The plan was sent to the Delegate for approval at the end of January 2020. The plan was approved and arrived in his My Gov account on the 19 January 2020 and he sent it straight back for S100 review due to the omission of the asked for Home Modification Capital Supports.

In April 2020 he received an outcome of the S100 review stating, amongst other things,  “I am not satisfied that there is sufficient evidence at this time to make a determination as to whether the requested support represents value for money” and “I have assessed this support against each of the criteria in section 34 of the NDIS Act, and I am not satisfied that your request is reasonable and necessary.” This is his personal favourite,” “I am not satisfied that there is sufficient evidence at this time to make a determination as to whether the requested support is effective and beneficial.” To date, he is still fighting with the Agency to get the Home Modifications completed.

The One-Legged Sax Player is a nice guy. He works hard, He is a husband, a father, a colleague, a friend, a confidant, a board member, a speaker, a teacher, an advocate and an activist. He is well regarded in his community and works his butt off for them with little or no reward.

He has paid taxes since he was 15 years old and has served his country in the Royal Australian Navy, so it begs the question, on what planet does a ramp covering 4 steps and making accessing his house in a wheelchair, not reasonable, necessary, effective or beneficial?