Year: 2023

Written by Tammy Milne – PDA TAS Associate Director

The social model of disability

I have lived with what others call a disability all my life. I have Arthrogrophosis Multiplex congentia which is not very well known, with many doctors even needing to google it to understand what it is. 

I use a wheelchair now, but for many years I walked around using a walking stick and long calipers (leg braces). However, the effort involved took its toll over time and I had to resign myself to the fact that I was now indeed a wheelchair user.

Things have changed dramatically for me. Whereas before I was able to open doors and even drag myself up a couple of steps, now I can’t because as we know wheelchairs can’t fly. Other things changed too. Where once I could go to a regular toilet (of which there are thousands, millions in the community), now I had to seek out accessible disability bathrooms (which are not as common). Even doing one of my favourite activities became a problem, op shopping! Do you know how many op shops are inaccessible? And don’t get me started about shops in general out there. Geesh! There is still a long way to go in the talks and provision of accessibility.

But even with challenges such as these, there are times where I can forget I have a disability. I am simply me and when things are going great, I forget. This is when the social model of disability is working perfectly. So what is the social model of disability you ask?

“The social model of disability seeks to redefine disability to refer to the restrictions caused by society when it does not give equitable social and structural support according to disabled peoples’ structural needs.“   (Pam Thompson et al 2012)

So basically, this explains why I forget I’m disabled at times. If I can smoothly traverse my day with no manmade obstacles to stop me, then I am not disabled. If I can get to a toilet, if I can go to the shops I want, if I can just go about my business like everyone else, then am I disabled?

It’s only when access is denied by obstruction that I become frustrated and rail at the unfairness of it, not just for me but for everyone like me.

Yesterday I got a takeaway coffee and googled the nearest fenced dog park. My doggies, my support worker and I were going for an adventure and some much needed outside time on this barmy (for Tasmania), sunny 17 degree day.

We arrived at a beautiful tree lined park with thick green grass and doggos everywhere bouncing around after balls and socialising with each other as their people socialised with the other humans. We parked the car between the trees to get close enough so that I didn’t have to traverse much of the rough gravely dirt to get to the gate, but then we saw the gate. There was a small step. Even though it was small, as I said before wheelchairs don’t fly. I could not enter. I was frustrated! I sat in the car and watched through the window as my doggos enjoyed the park. I could not join them. These are the times I feel disabled! These are the times when society has built infrastructure that excludes me.

Not being a shy flower, I instantly rang the council to point out this discrimination. The response I got was “gee that park’s been there for years, no one has said anything before this.”

I responded with well something needs to be done now.

The reason why no one has complained about the access issues in the past could be attributed to a number of reasons; the emotional labour it takes a person with disability to constantly ask for solutions to barriers takes its toll and there is only so much we as individuals can speak up about. Another reason, people with disabilities simply don’t know their rights – under anti discrimination legislation, access is not to be denied to PWD. It is your right to enter just like everyone else. The last reason could be a council issue. For all the access and inclusion committees put in place by councils these days, the work simply isn’t filtering down to the ground, like the actual bricks and mortar of the council area. Policy is one thing, but action is another.

The takeaway from this story is that we need to be striving to make sure access is not denied. The social model of disability is a reality, disability is a construct. That is, our environment makes us more disabled than others simply by the way things are built around us. I want to continue to live my life day to day forgetting I have a disability. For this to happen at the moment, a lot of people like me need to speak up about the issues and constraints in their communities, such as access to my local dog park. We should not be denied.

The PDA Team loves to share information, disability stories and personal experiences on our website’s blog page and to ignite discussions and encourage the sharing of ideas and opinions on our socials.

Seeing these interactions and reading comments from everyone also helps us to gauge what’s important and where we need to focus our attention as an organisation representing Australia’s disability community.

Being recognised for doing this is an added bonus and has us walking, wheeling and hopping around with the biggest smiles on our faces.

So we’d like to thank Home Caring and Vital Home Health Services for naming Physical Disability Australia in their recent “8 disability blogs you must read” and “8 Disability Blogs To Lift Your Spirits” lists.

We really appreciate this honour and recognition and look forward to continuing to bring you stories of interest and importance.

❤️ Team PDA

As the NDIS National Disability Insurance Scheme celebrates 10 years, a review by an independent commission is looking at ways to ensure that it works well for all participants.

Through the help of its participants, the Scheme’s problems and successes will be pulled together and potential solutions identified.

The Australian Federation Of Disability Organisations (AFDO) is made up of member organisations, including Physical Disability Australia, who together work to uphold and address issues impacting the lives of people with disability in Australia.

As part of the NDIS Review, AFDO is making a submission to the the independent commission on behalf of people with disability. To do this we need your feedback and ideas around improving the NDIS to ensure that the voices of its participants are at the heart of any reform.

If you’re an NDIS participant and would like to have an anonymous say in making this happen, we invite you to take part in a survey where you can share your experiences around accessing the Scheme and how you feel about your plan.

AFDO respects your privacy and all answers will be de-identified and private. Information supplied is protected by AFDO’s Privacy Policy (https://www.afdo.org.au/our-work/privacy-policy/).

The survey closes on Friday 14th July and can be accessed by going to:

https://us10.list-manage.com/survey?u=a56e874cd0bbf97085d908efa&id=cf6e40f44f&mc_cid=bfa49c44d6&mc_eid=3f8e5209b0&e=3f8e5209b0

Thanks for your time. Together we can play a role in making the NDIS the best it can be.

If you missed seeing the ABC TV’s piece on the 10th birthday of the NDIS, we encourage you to check it out.

It’s an interesting look at the life of the NDIS, with some wonderful insights from those involved in its management and those accessing the system – including PDA’s SA Associate Director, Krystal Matthews, who comes in at approximately 26:56 minutes.

“Nas Campanella looks at the successes and failures of the NDIS. We hear from those with lived experience of the scheme, plus Chair of the National Disabilities Insurance Agency Kurt Fearnley and NDIS Minister Bill Shorten.”

https://iview.abc.net.au/show/ndis-10-years/video/NS2338H001S00

Ticketek’s website talks the talk about accessibility and fairness, but ticket sales for Taylor Swift’s upcoming Australian concerts highlights the lack of consideration given to disabled people requiring accessible seating.

In attempts to appear just and considerate in providing fair access to all fans, Ticketek promoted “helpful tips to give a smooth checkout” to Tay Tay Eras Tour tickets on their sales website.

All very above board and thoughtful for the hundreds of thousands who hit the Taylor Swift ticket sales website during both the pre-sale and general public sale dates…at least for able bodied fans.

However, for Swifties requiring accessible seating, their race for oversubscribed concert tickets was anything but easy and reeked of discrimination and unfairness.

Unable to choose seating locations and purchase tickets online, people with disability were instructed to complete the online accessible booking form made available when ticket sales opened. They would then apparently be contacted via a “dedicated support line” member to complete their purchase.

Sounds fair on paper right? Well, not really going by the experiences of the many Tay Tay fans requiring accessible seating. 

Blocked out of VIP ticket options as the result of rapid, high demand sales and allocated disability VIP package seating, disabled Swifties were once again locked out of Ticketek’s fairness policy.

With Companion Cards also not being honoured for these packages, the very few fortunate enough to get within arm’s reach of these dream tickets once again had road blocks thrown in front of them. Ticketek’s apparent stance on Companion Cards tending to be invalid in VIP sections, meant that support workers could not be accommodated – unless, of course, they also purchased the VIP package.  This challenges Ticketek’s website which outlines that government issued Companion Card holders may be eligible for a complimentary ticket allowing companions required to assist event attendance – on purchase of a full priced Ticket.

So for those who managed to get hold of accessible seating, time will show if they meet the needs of an audience requiring well thought out consideration. With concert goers typically ending up on their feet shows, will the views of people in these accessible spaces be guaranteed a clear line of sight to the stage and their beloved Tay Tay or to the Auslan interpreters?

Sadly the issue of accessible seating purchase and suitability is not something confined to Taylor Swift’s Australian tour. However, the ticket purchase experiences gleaned from her Australian fans living with disability, show that current protocols are inequitable and discussions between ticketing agents, venues and PWD must be brought to the table.

Whilst Ticketek, as Taylor Swift’s Australian ticketing agent, has been singled out in this instance, other agencies have also been tainted in similar ways by user experience. Current booking processes are inequitable and ticketing agents, venues and PWD must be brought to the table to discuss how accessibility can be fairly achieved.

It’s time for industry wide review and for audiences to be given fair and equitable access to events – regardless of ability.

Shared by Tim Marks, PDA TAS Director

Tim Marks (PDA TAS Director) shares this video of his new leg being fitted.

It is a c leg computerised prosthetic leg with a flex foot. The socket is a varios socket which, at the time of recording, had only been out 8 months.

After 13 years as a wheelchair user, Tim is finally learning to walk again.

Written by PDA President, Andrew Fairbairn

On Thursday 01 June I attended the Assistive Technology Suppliers Australia (ATSA) Independent Living Expo at the Perth Showgrounds. 

I went to check out what is new and upcoming in the AT world. To be very honest, I have been to many of these in the past and so was not really expecting anything to take my breath away. Well, I was very wrong.

There were well over 100 suppliers. Everything from all types of wheelchairs and wheeled mobility devices to bedding, beds and lift chairs for the lounge to modified accessible vehicles, to the latest in devices for vision impaired people.

I want to highlight 3 products that really blew my mind. 

#1. A remote-controlled wheelchair. I was wandering through the exhibits and this empty attendant wheelchair came towards me. It was surreal to see this, so I followed it to the stall to have a chat with the operator. She explained that it was designed for a user who needed to move the chair independently once they had transferred from the chair to a bed for example. It can be easily operated by a support worker or by the person with a disability.

#2. In the physical disability world, we know that on the whole wheelchairs haven’t really changed much in the past years. I came across Rove, an engineering company based in Melbourne, who are doing some game changing work in the build, and weight, of custom wheelchairs. They are building them with 3D printed Titanium, so they are super lightweight and extremely strong. As they are custom made, the final chair is completely custom fitted to the user and as they say, “millimetre perfect”.  I was passed a very big frame and it weighed no more than my prosthetic leg. Incredible.

#3. Mobility scooters are great, except when you forget to charge the battery. Well, there is now a solution. A solar powered scooter. This scooter has 2 onboard batteries which are on constant trickle charge as the scooter is being used out and about. It has 3 solar panels on it which are flexible. It can also be plugged into mains power.

I would encourage all members to go to the ATSA Expo in your area. It not only is a great opportunity to see, touch, hold and explore new AT, but also to network, meet new people and catch up with old friends. 

It was great to spend some time with my WA Associate Director, Melanie, and get some photos together.

Please check out the link below to see a short video of the remote-controlled wheelchair:

Written by PDA WA Associate Director Melanie Hawkes

There’s nothing worse than being cold! I find it really difficult to warm up. I take at least 20 minutes to get dry and dressed after a shower and can’t wear thick jackets or extra layers as it affects my arm movements. I still need to be capable of driving my wheelchair and feeding myself on cold days. My hands and feet are like ice blocks most days. It makes me miserable, and I can’t sleep if I’m too cold. Nobody likes grumpy Mel, so here are my top tips for surviving winter:

#1 Heated throw rug – I got one last year from a friend, and I love it! I have it plugged into a smart Wi-Fi plug and use my voice to turn it on and off through my Google assistant. So handy when I go to bed freezing, or wake up shivering during the night. The smart plug app has built in timers, so I can set it to switch itself off. It usually only takes 15 minutes, so I warm up quickly. I wish I could hide under it all day!

#2 Bake – find any excuse to put the oven on! My favourite thing is to roast pumpkin. I take my time turning each piece over, enjoying the warmth on my face and hands. And always leave the oven open when you turn it off. It’s a great way to warm the house. Just be careful not to burn yourself.

#3 A warm bath – I love my bath! I have it as hot as I can tolerate. I got TADWA to make me a comfortable bath seat, and I have a wooden table for my magazine and a drink. And bath bombs are the best. The longest bath I’ve had was three hours, and yes, I had to add a kettle of boiling water after two hours as I started to get cold.

#4 Find the sun – my house was designed to maximise the winter sun. I go from window to window as the sun moves throughout the day.

#5 Hand warmers – I have an electric hand warmer that warms up to approximately 50°C, but I really like the Hot Hands hand warmers too. It is a lot lighter, they always come in sets of two, but unfortunately they aren’t reusable. Most chemists sell these, and they’re the only way my hands don’t freeze at the footy.

#6 Hairdryer – I always have cold hands while using my computer. So I put my hairdryer on my desk! I have it plugged into a wifi plug so I can turn it on and off with my phone. And it blows hot air right onto my hands! Great for when my support workers have freezing cold hands and they have to undress me. The only downside is it’s loud, so can’t use it during zoom meetings.

#7 Heated socks – yes they exist. I bought mine from Amazon. Mine have a pocket for the rechargeable battery to sit in while wearing. It has a remote control too! On the lowest setting the batteries last all day, and my feet are no longer purple ice blocks.

#8 Mulled wine – when all the above fails, mulled wine it is for me. I found Zenzen Gluhmein, a German Christmas wine, at Dan Murphys. A small amount in a mug in the microwave for a minute and I get toasty warm.

Good luck with keeping warm this winter!

Written by PDA TAS Associate Director, Tammy Milne

***TRIGGER WARNING – LOSS AND GRIEF***

***SPOILER ALERT – “Guardians of the Galaxy 3”***

Today I went to a movie and I cried almost all the way through. This wasn’t some mushy romcom or chick flick. This was an action sci-fi film. It was “Guardians of The Galaxy 3”.

Why did I cry so much? I am a woman with a disability and the character Rocket brought out in me some deep-seated emotions around disability that just could not be held in. They burst forward and I was a blubbering mess for most of the film.

Rocket, like me, received many painful operations throughout his young life. These enhancements for both of us came at the cost of pain – real bone grating, breaking, aching pain. Seeing Rocket suffer triggered that empathy dam that burst its banks, allowing tears to roll forth in torrents. I know your pain Rocket!

The friends Rocket made in his cage caused all kinds of grief for me as well. This little creature was loved by his group of also tortured friends, with their shared pain and suffering creating a bond where together they endured and made the best of their sorry lives. When they were killed, that was it!  I totally lost it. Rocket’s feelings of abandonment, pain and anger were so real and I felt that they were happening to me. Another creature misplaced in the universe. 

As I write this, it’s 12 days ahead of the anniversary of Phil’s Death (my husband and partner of 33 years) and maybe this was the trigger that I needed to grieve again. It seems that loss is never finally over. When Rocket almost died, was reunited in the great hereafter and was told “we missed you, you can stay, but not yet as your time has not come”, again my tears rolled liked rushing snotty rivers down my face, with big ugly sobs to go with it.

Is death just the beginning? Will we be reunited with the ones we love? I hope so! And you know what?  In the hereafter the movie characters still had their callipers and wheels, because they are part of what we/they are. We don’t have to change and be cured to accepted in the great beyond! We are what we are!  LOVED!

I was not alone in my grief at this movie. My daughter beside me was just as stricken. We held hands and sobbed our way through the movie. Others probably thought we were an odd pair – the young woman and the older woman on a scooter crying uncontrollably at what is essential a children’s movie. We shared our grief together, separately, individual, but together in our journey of grief.

When the Guardian rescued the inhabitants of the factory of misery, and all the higher order creatures, the sobbing began again in earnest because creatures like Rocket were not included. Rocket would not leave them and the baby rockets were scooped up and hauled on his back to be carried through the fire and destruction and saved. Rocket risked his life to save them because in his eyes they were worth saving. They were his family. They were like him and worth life. 

They had value. Wow, did that bring up deep seeded feelings of unworthiness that have personally followed me through life because of my disability. But I too am worthy and I applauded Rocket for his bravery in saving them. Who decides who is of value? Who decides who is worthy? Who decides who lives or dies? We judge a society on how it treats its most vulnerable. 

I see myself in Rocket. and what I saw made me cry uncontrollably and think I would never leave this grief behind. It is now 5 hours later and I just had to write about this, to share how for me life imitates art. For me grief is still with me and like Rocket I will fight on. I will put my tears away, bolster my courage and, just like Rocket, live because I am worthy!

Mark Pietsch is PDA’s NSW Director and yesterday he was interviewed on ABC Illawarra radio’s Breakfast Show hosted by Melinda James about the NDIS National Disability Insurance Scheme.

His segment is at 1:58:48.

Check it out. Mark has some great points and suggestions.

https://www.abc.net.au/illawarra/programs/breakfast/illawarra-breakfast/102270486