Tim Marks, PDA TAS Director, recently had his beach wheelchair delivered.

In this 2 part video on PDA’s YouTube channel, he shows just how easy it is to use, put together and dismantle.

          

          

Written by and starring Melanie Hawkes (and her dog Upton)

Growing up with three younger brothers, my parents were busy all the time. I either had to learn to do things for myself, or wait a while for someone to help me – not ideal. With hands like mine, sometimes it was a challenge to find ways to do things, but it has made me more independent. There’s no better feeling than being able to achieve something previously thought impossible. 

I only have the ability to bend my little finger on each hand, but can grip things between some fingers as well. Tasks I can do include feed myself with ordinary cutlery, write, type, knit, cross-stitch and prune my bonsais with scissors. What I can’t do with one hand I can usually do with the other, and if not, I use my teeth. ** Disclaimer: don’t try this at home. I look after my teeth by flossing and brushing every day and regularly visiting my dentist. **

Here are some videos of me doing some everyday tasks. It might be slow and frustrating to watch, but I am proud that I can do these things when nobody is around to ask for help.

You can watch my videos below or by going to the PDA YouTube channel (https://www.youtube.com/channel/UCMyTzhTbs2oLH-WZR18zX2Q). Whilst you’re there please check out our other videos and subscribe.

I hope that you enjoy watching my videos.

Written by Melanie Hawkes (PDA WA Associate Director)

Melanie was commissioned to write an article for “Housing Choices Australia” Annual Report. They are happy for it to be shared on our website.

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: 

• * Make my own toothpaste and apple cider vinegar and cleaning products 
• * Use solid shampoo bars and bars of soap instead of liquid in the shower
• * Have a dog pooh worm farm
• * Take my reusable shopping bags (and have some on the back of my chair for when I forget)
• * Use reusable straws at home and in my water bottles (got my dad to cut them to size)
• * Take my own containers and buy in bulk where possible 
• * Sort my rubbish and return recyclable items to specialist places (e.g. light globes and ink cartridges go to my local library)  
• * Return my soft plastic to the supermarket for recycling
• * Use rechargeable batteries 
• * Refuse single-use plastic bags when buying fruit and vegetables 
• * Use soap nuts instead of washing powder in my washing machine 
• * Use metal pegs instead of plastic ones on my washing line 
• * Buy tissues and toilet paper made from recycled paper or bamboo and not ones wrapped in plastic 
• * Use reusable paper towels (and wash them when dirty) in my kitchen and bathroom 
• * Take my lunch to work to avoid buying takeaway 
• * Have a water filter at home and refill my water bottles so I don’t have to buy bottled water
• * Make my own dog treats and dried fruit in my dehydrator
• * Return eligible containers for 10c refund 
• * Collect the cold water when waiting for the tap water to warm up 
• * Get my dog to pick up rubbish while out walking.

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:

• * Start small. Don’t go out and try to do everything at once.
• * New habits take time, and you do not want to be disheartened along the way if you encounter setbacks. Build on each small success.
• * Make it easy and convenient to succeed. I have a normal bin, a recycle bin and a bag for soft plastics in the kitchen(so it’s easy to sort the rubbish where it’s created). When the bag is full, I put it at my front door so I remember to take it back to the shops next time I go. 
• * Be a conscientious shopper. Question every purchase you make. For example: do you really need it? Is there a more sustainable alternative (e.g. wet wipes vs cloth wipes that can be washed)? Can you easily make it yourself? Can you reuse the packaging (e.g. beetroot in a glass jar could be better than a tin)? Where can I buy it locally (e.g. a local farmers market vs a big chain supermarket)? Can I return the packaging and refill it? Can I make do with something else I have at home (e.g. you can make your own spray and wipe mix, and use it for everything in the kitchen, bathroom and even the toilet, instead of buying three different bottles)? Do I need it brand new or would second hand do?
• * Decide on a reason for doing this. Don’t do it just because someone told you to. Make it a passion. Know that you are helping the environment. It will probably save you money too! 
• * Educate yourself. Your local council can tell you how to sort your rubbish correctly, and there are many online resources. Ask plenty of questions until you are satisfied with the answer. There are no dumb questions, ever! 
• * Join your local community garden and Buy Nothing Project group to find like-minded people who can support you in this journey. You can share your experience with others and learn so much. 

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://journals.lww.com/psychosomaticmedicine/Abstract/2007/05000/Joint_Effect_of_Depression_and_Chronic_Conditions.7.aspx

https://www.sbs.com.au/guide/article/2021/07/20/sbs-asks-what-does-australia-really-think-about-disability-old-people-obesity

https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/people-with-disability/prevalence-of-disability

📷 thanks to Vicki Carman-Brown

Written my Robert Wise

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.

Written by Sharon Boyce

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. 

 

https://www.youtube.com/watch?v=gjGcquk-_00&t=3s

 

Written by Tammy Milne – PDA’s TAS Associate Director

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 17^th 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. 💔]

Written by Kathryn Lyons – PDA’s QLD Associate Director

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 💕