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.
My ongoing health journey and understanding disability and health is especially important in these covid times. Accessing the equipment necessary for diagnosis and treatment is essential and when you can not get onto the CAT Scan bed this is a major problem. We have to make it work. We have to ensure equipment is accessible and suits everybody. We also need to be educated about how we can adapt situations and support people with high level complex physical disability.
I thought I might share with you some of the snapshots and issues that arose and had to be explored over the past two years of my life and health journey. I also thought I could look at some of the specific problems that arose and some interesting solutions that I found existed.
I should let you know that I am now back at home and easing back into work after spending many months in and out of hospital with septic shock of my kidney again. At the start of the crisis I thought I was going so well avoiding having to go to doctors and mostly self quarantining – until I was rushed to hospital in Toowoomba and experienced the Covid-19 environment first hand and from a disability perspective! The many Zoom and team sessions came together to help me in surviving many weeks in hospital, along with my family and carers helping in every area and watching everything that was done.
There were some interesting discussions and outcomes that followed, with some massive gaps in disability care, attitude and understanding being raised. The doctors were good and some of the nurses tried very hard to understand disability, but even they really were learning as we went along. There needs to be so much more education available to those in the medical sector around all areas of disability and life issues such as the need for space, Disability-considered equipment, attitudes and perception. There seemed to exist a very real lack of consideration and workability of hospital layout in terms of illness, physical disability. There was no room for my equipment and equipment (such as hoists, slings and a shower chair) that made my life work were just seen as inconveniences and something that took up valuable space.
Assumptions were made about my ability to make choices, despite my cognitive abilities and very complex disability needs requiring a lot of flexibility. My family and carers were sometimes asked inappropriate questions about my choices and why I needed certain equipment or certain medications. I was highly allergic to one such medicine and it was only because of a carer and my own surveillance of the process that it was stopped immediately and no major issues resulted. There was no knowledge about using equipment or even accessing CAT scans or X-Ray equipment that worked around my needs or condition. Even medical choices I made were questioned because attitudes of some staff were condescending and misinformed about physical disability. There also seemed to be an attitude amongst staff that because I was so close to death, they should just make every decision and I should not question it or how they did it. This did not work because they did not understand disability, instead simply making assumptions and conclusions around their limited understanding. As a result there were times that my care and recovery were placed in jeopardy. Issues of medication and very limited time frames for actual survival also compounded the situation.
Once I began to improve I tried to engage staff and educate them around hoisting, stomas, showers, skin care and overall attitude. I believe disability awareness has to be built into all university training courses across all areas of health. Hospital was accommodating, in most cases but, if I didn’t know my rights, hadn’t planned ahead and didn’t have the a ability to communicate my needs, the stay would have been impossible. I am so lucky I came out of hospital before Toowoomba became a hotspot. I would not have been able to have my family support and care team readily available on site helping to make everything possible and my care safe and doable.
As a person with high level complex disability and specific needs with care I thought I knew the policies and way things could be done to ensure best practice and great outcomes. What I saw was huge gaps in education, awareness and attitude at every level. I could not get on to the CAT scan bed with my hoist and two carers helping, as well as the Radiology staff. I only had a very small window of time to live so the process had to done as fast and carefully as possible. I was relying on my two carers to show them my documented plan and use my hoist and also to ensure I wasn’t rolled or moved in any way to damage my neck and spinal cord. Surrounded by wardies and the X ray staff my carers literally had to frequently remind them of my unstable spine issue so they wouldn’t roll me. The hoist wouldn’t fit under the cat scan bed, even though it was a new one, so they really didn’t know what to do. Vital minutes were ticking away.
They then remembered they had a new piece of equipment – a hover mat that they could use. I could have CAT Scan and they could be done easily and safely. This took the pressure off the Radiology team and my often very short health requirements. If I could not have the scan we could not progress to the next stage of medical help. This piece of equipment is lifechanging for people who cannot transfer any other way onto a CAT scan bed or a X-Ray bed. It literally is like a hover craft that inflates from your bed and moves you across to the other space. It takes about five minutes in total and you are secured and safe. The only requirement is that the staff at the center know that it exists, first of all, and how to use it speedily and safely. I was so lucky that this was purchased by the hospital and that there were some staff who knew it existed. There was a team who worked together with my complex physical disability and high level sepsis that actually inflated the hover mat and moved me across to the CAT scan to actually perform the scan in enough time to ensure the next stage of medical treatment could continue. This piece of equipment is a life saver and we need to advertise the fact it should be available in every hospital.
This was the first of many issues with equipment access and space. I only know that I would not be here if it wasn’t for some doctors and nurses who knew about disability equipment and support and also how to communicate and understand a person with high level disability and high level sepsis. It also needs to be said that without my carers and family helping with my advocacy and care this supportive situation would not have been possible. I might not want to say this and I believe I am very strong in this area, but when you are at your weakest you need plans and support to ensure best outcomes for recovery and survival. You also need equipment that enables you to get the required diagnosis and ensure that your situation is supported and your other areas of health are not damaged in any way.
The new hover mat if a essential piece of equipment that makes the other essential areas of health such as cat scan, MRIs and X-Ray beds work for individuals who in the past could not access this safely and effectively. These type of innovation in the health sphere need to be celebrated and the information shared across all of our disability communities. There is constant research and equipment being developed and we need to push for more of this and also share our good news stories about how things work and when they don’t we need to question how we can have a solution created.
To see how the hover mat works go to PDA’s YouTube channel by clicking on the link at the bottom of this blog. Don’t forget to subscribe to PDA’s channel whilst you’re there.
I have now recovered and am currently back at home and hoping that I stay healthy and can keep up my current workload. I am enjoying working with the Independent Advisory Council and my many other disability groups I work with. I never believed I would be actually givinglectures and zoom sessions about a first hand experience of life with disability in the covid-19 environment. (Some of them were very first hand, still being in hospital.)
It is so important to create positive change across health and especially for people with disability. There are many attitudes that need to be changed and also many disability issues to be explored and educated about. We need to continue to ask how we can make this health area more inclusive and more understood. We all have certain needs and things that impacts in this space because of our disability. We need to break down barrier and create conversations so when we are at our weakest and most vulnerable the people who are tasked with our health recovery understand what they are dealing with and how they can help make life better for both sides. There was some very scary moments and without my support my recovery wouldn’t have been as smooth as it was able to be.
Phil and I met at the Footy Club in 1987 and his pick up line was a classic “I’d like to get you alone”. From this I deduced that with a line this lame he must be okay! He was 33 and I was 23 years old.
We were together for 33 years until his death on the 17th May this year, 2021. He was 66.
What makes our story different from other love stories and stories of loss and grief?
I am a woman with a physical disability.
Although this shouldn’t make a significant difference to our relationship or any relationship of love and loss it does.
Here is why.
As other people with disability will know the pressure of society, discrimination and the constant barriers put in the path both physically and psychologically take a huge toll on people with disabilities on a day-to-day basis and the cumulative effects can be debilitating resulting in lack of confidence and self belief. 40% of PWD live with depression while those without disability are only 8%.
Adults with disability are more likely (32%) to experience high or very high levels of psychological distress than adults without disability (8.0%). This is particularly true for adults with severe or profound disability (40%) (ABS 2019c)
So having a partner who supports your every endeavour with steadfast dedication and solidarity really helps to negotiate this world and support a partner to be a the best they can be.
That constant reinforcement that you are ‘good enough’, you are, ‘clever’, you are ‘normal’ should be bottled and available to everyone. The quiet love that’s stands on your sideline and cheers for you regardless of the situation. When this is gone, the memories and years of support are still there and the therapeutic work of their support is still there but they, the person, are not and the loss is huge. It’s like your team of two has been cut to one and a whole side of yourself has been taken away.
I’m not talking nasty co-dependency. I’m talking about the best of what kindness, love and genuine dedication to each other gives to a relationship.
So that’s the loss of the emotional support. So then add the loss of the physical support. The day-to-day jobs that as a partnership with one person disabled the other takes on; like checking the mail, like getting the newspaper from the driveway, like the million other little things they do that makes your life seamless. Even with NDIS support and support workers those jobs that seems to have been absorbed by the other as a matter of osmosis can not be replicated.
Even the simple fact of safety, of having that extra person in the house that protects you when a medical emergency occurs. If you fall or there’s a medical situation they can phone for outside help. The unpaid care that person has undertaken over the years of your relationship can never be estimated in monetary terms, but would potentially run into millions of dollars.
Our love was deep, dedicated and a bond of strength. We were equals. The gap left by this loss and the subsequent grief cannot be quantified as any more than an ABLEd relationship (a relationship where both parties are not disabled), but there is qualitative evidence in the need for additional physical supports and time will only tell if the loss of the emotional support will result in other supports being needed.
In conclusion a disabled/abled relationship provides both parties with a rich and full life. It cannot be argued that the relationship is not equal, but the loss, grief and emotional and physical support does impact and does result in a more raw loss for the disabled partner left behind and a unique perspective on grief and loss.
[From PDA: Dear Tammy. Thank you for sharing this tribute to Phil, your celebration of a relationship built on true love and your heartfelt and incredibly moving exploration of grief. On behalf of the PDA Family we send you our sincere condolences, love and support. RIP Phil. 💔]
For the last six months, whenever I got my menstural cycle, I would lose my voice. In the beginning it was only for 24 hours, but for the last three months my voice would disappear for weeks. I would be talking fine and then the next second nothing. Not even a whisper. It is the most bizarre thing.
Currently, it has been 22 days without my voice and it has been really hard trying to communicate with people. Auto correct has been very fun to deal with.
At times I just feel trapped. When people don’t understand you and you cannot verbally communicate, it gets very frustrating watching others trying to guess what you are trying to say even if it’s the simplest thing such as “Hello. How are you?” or “Milo”.
I am currently using a text to speech app, but the voice sounds so sarcastic and nothing like me, giving a different context to what I want to actually communicate.
I just feel trapped inside myself unable to speak out as I once could.
But I knew I could not let this stop me from living.
I had to adapt quickly and find a way to go forward with this!
So, I kept streaming and changed things around where, instead of talking, I would play music and chat via the chat box with everyone and it has been working amazingly.
Still determined to break down the walls and taboos of the disability area, I started to branch out. I took up modelling, which is going well. In a few weeks I am going to be involved in an amazing fashion show where I will be on the cat walk – or as i like to call it, “Catwheeling”.
I am still active in my advocacy work, raising awareness about diversity as well as public speaking. As I find different ways to adapt without my voice, I am determined not to let it stop me.
My main focus is to make changes within the community and around the areas of sanitation, hygiene and infrastructure – working on creating real inclusion.
I even started going to the gym, hoping that through building up my core muscles my voice will one day return.
However, even if this does not happen, I have learned that I can adapt to any situation. And so can you.
Just because something happens or something in us changes, this does not mean we have to give up.
We can keep going. Remember it is okay to feel trapped in yourself at times, so long as you keep going forwards.
You just have to get up every day with a smile on your face and tell yourself “I am going to have a great day” – even if you cannot verbally say it!
No matter what challenges life throws at us, we are all strong and can get through it.
I refuse to allow curve balls stop me from achieving my goals. I will continue to make change in the world and live my best life.
Alongside and in spite of my disability, potential ongoing deterioration of my medical conditions and life in general, I will continue to adapt and keep moving forwards.
You can too!
Kathryn Lyons 💕
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On this International Women’s day, not only do we celebrate women’s achievement and raise awareness, but specifically in 2021 we are challenged to take action for equality. International Women’s Day (IWD) is being celebrated on March 8th 2021 with the theme #ChooseToChallenge.
I am a proud physically disabled female, and I choose to challenge gender bias and inequality. What do you choose to challenge this year?
Many that know me will know my motto in life is don’t judge me by my disability but give me an opportunity to show you my ability. I think same could be said should we switch the word disability with gender. Don’t judge me for being a female, but give me an opportunity to show you my ability. Either of these phrases are relevant due to gender bias and inequality that women and people with a disability fight for every day.
IWD is a day that celebrates women’s achievements and increasing visibility while calling out inequality. This day is celebrated every year similar to International Day of People with Disability (IDofPWD)where we celebrate people with a disabilities achievements and increased visibility while calling out inequality of those with a disability. I am a firm believer that both of these days deserve separate celebration where it provides again an opportunity to call out inequality globally and show that it still exists all over the word.
What would happen if we removed gender or disability from part of the equation? Could we ever get to a point where not only women, but those with a disability are included in all places where decisions are being made, not just being made for us? With continued unity, strong voices to stand for equality, it is not impossible.
We will continue to reflect and celebrate these days internationally for many years to come as we are nowhere near a society that fully sees past gender, disability, race and or religion. I am happy to believe, because of the celebration of IWD & IDofPWD we see the world starting to move forward and becoming more inclusive and equal. We certainly are not there yet however we are starting to see pay equality in most areas, more inclusive workplaces for people to thrive in, celebration of women alongside men in all areas and positively the list goes on.
Individually we can choose to challenge and call out bias and inequality. Individually we can all choose to seek out and celebrate individuals achievements. Collectively, we can all help create an inclusive world.
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.
Now, go and do what makes you feel good over the holidays.
1800 732 674
