Author: Natasha Nobay

Written by PDA’s QLD Associate Director, Sarah Styles

We are all familiar with the journey of learning to thrive through disability. This path normally involves years of searching for answers with many setbacks in finding the best management plan and supports. Then, dealing with organisations like NDIA brings challenges that can push us past our limits. It is after years of this I found my mental health at a low. 

Since my exercise physiologist is working well with me, I decided to enter a powerlifting competition. It would give me a healthy goal that involves other people in the form of other competitors and those that work with us. Turned out to be the best decision.

Benefit 1 – Starting bench press improved my body in an unexpected way!

As someone with hEDS my connective tissue is too stretchy and cannot support my body and organs the way they are designed to. As a result, my muscles need to be extra strong to support my joints instead. It’s also hard to stretch because I hyper-extend and get no benefits, even though my body is screaming out for it.  My body desires to move and get strong but more often than not I get injured doing simple things. 

Lying down on the bench press provides a decent stretch without injury throughout my whole body. Winning already! 

Benefit 2 – Mental Health

My mental health improved immediately as expected. Physically feeling better and stronger coupled with a goal to work towards really did the trick. 

Benefit 3 – Meeting people who are happy to work with me – no matter what that means! 

Powerlifting Australia informed me that the next competition was fast approaching, and they were happy to make adjustments to make it happen last minute. Not only that, but there is no segregation. Adjustments are made so everyone can compete together regardless of their physical ability. Which I really appreciated. This alone was uplifting and empowering. 

Competition day. 

The first thing I noticed was the family vibe. Feeling that, I knew everything would be fine.  Despite arriving an hour late to prevent health issues – I struggled – but they flew into action. I was informed of anything I didn’t know, such as doing weigh in, choosing what weight I’d lift for my 3 attempts, then warming up. 

It takes a lot of people to make a competition run. Everyone knew their job and functioned so well as a team you’d not know if there was a problem they had to solve. I ended up pressing my personal best – which was exciting – and leaving with a gold medal!

As a spectator you can’t help but cheer everyone on. I even witnessed a world record being made. I am definitely looking forward to the next competition and I’m thrilled to be counted with everyone else. 

Written by Tammy Milne – PDA TAS Associate Director

I am a white disabled woman living in Australia. My cohort is still the most marginalised and discriminated against minority group – people with disabilities suffer discrimination in Australia more than all the other minority groups put together. 44% of all complaints received by the Human Rights Commission are in regards to discrimination because of disability (AIWH, 2023).

I am a university student and as such come across a wide range of overseas students. 

My taxi driver from Lebanon on Friday night said that they had been a nurse in their home country, and that things are very different here for people with disabilities and so I am very lucky. Our country is getting a little better.

My support worker from India is a trained physiotherapist – but only in India. I asked her what it is like for people with disabilities in her home country. She answered “Good if you come from a rich family who can pay for everything, but it is not like it is here.” When I asked how things would be if you are not from a rich family. She sort of frowned and answered “it’s not good.  There are a lot of beggars in India who have disabilities. They beg for food – that is if they survive.” I asked “Do they die?” Her sad answer was “Yes”.

My Iranian friend at university has a cousin who uses a wheelchair. Her family is able to take care of her and her mother and family are very protective of her. She mentioned that access is very difficult in her country and the shops and streets make it very hard for her family to push her wheelchair. It is also a country where it is mandatory for women to wear a hijab. Very proudly my friend said her cousin asserts her dissidence by claiming she cannot wear it because of her disability. It seems that, at least to this point, she has been given some leniency.

My first holiday overseas was to Indonesia. I was 24 years old. Getting off the tour bus in a remote, small town square, I was rocked to my core. My naivety in my perceptions of what the lives of people with disabilities was like was rocked. I had assumed that everyone (wherever they were in the world), had a life like mine. I was so wrong. The bus was met by a small group of disabled people whose bone contractures (unlike mine) had not been surgically altered. They moved around on makeshift wooden skateboard type trolleys, sitting just a few centimetres off the ground. Prior to this, I had no idea what real poverty and deprivation looked like.

And so it is that I check my privilege. It is difficult to compare apples and oranges, a rich first world country and the countries outside of our “lucky country”.  I complain about the NDIS (National Disability Insurance Scheme) not being perfect and not meeting all my needs and the needs of others in Australia, but then I remember what I have been told and what I have seen.

In 2013 the Labor Government legislated a trial rollout of the NDIS to give people with disabilities choice and control over their lives – much like those whose disabilities saw them eligible for MAIB insurance. People with disabilities not covered under MAIB due to their being born with their disabilities, were then afforded a level playing field with the NDIS.

The scheme has now grown to be Australian wide. There is obviously still work to be done to make the scheme sustainable and efficient, to stamp out corruption from nefarious, unscrupulous entities and to give people with disabilities dignity. However, we are well on the way to this being achieved. We must also be ever vigilant in ensuring that the conditions offered to people with disabilities in Australia are the best that our country can provide.

I acknowledge my privilege to live in Australia and be a participant of the NDIS, but I will never forget that many living in other countries do not have such fortunate lives. It is but by a quirk of nature that I was born here, and they were born there! The divide between us is unfair!

Written by Robert Wise – PDA VIC Associate Director

This is the first of my series of blogs on assisted technology that has been funded by the NDIS to enable me to enjoy my freedom, to get out and about and, most importantly, to achieve my goals. 

For those who don’t know me, I am an above knee amputee with a type of amputation known as Hip disarticulation where part of the hip is also removed. I live in Melbourne, Victoria and am PDA’s Victorian Associate Director.  I always been passionate about exploring the outdoors and nature and  used to do a lot of hiking before my amputation. 

Today I am going to tell you about my Adaptive Trike known as a Jee-Trike supplied by Living Concepts Australia and funded by the NDIS. It is built from imported parts and assembled at Melrose Wheelchairs in Oakleigh, Victoria. It has been fully customised to suit me and my needs. You can view their range of equipment at https://melrosewheelchairs.com.au/. With my Jee-Trike I can now get back to my bush exploring, but from a different point of view. 

Image: My Jee-Trike

The Jee-Trike is known as an off-road, hand-powered cycle with an upright seating position and rear-wheel drive – which is a bonus as many other hand cycles are front-wheel drive which can be difficult to use with some forms of physical disabilities. It can be used by many people with different types of physical disabilities including those with quadriplegia. The Jee-Trike can be custom built to suit the user and can include options such as power assist to enable easier pedalling and brakes that can be operated by the elbow. Whilst the Jee-Trike is not suited to all physical disabilities, it can be adapted in several configurations.

There are many Hand Cycles available on the market. I chose the Jee-Trike as it was personally best suited and easy to modifiy for my needs. I have included a short video where I walk you through my custom-built option (please click on the link at the bottom of this blog to view). Special thanks to my support worker from Sonder Care Group for helping me film this video. Sonder Care Group is a support agency providing support workers to accompany you 1:1 (or other support ratios) and who make outdoor pursuits such as adventure camps, 4-wheel driving, mountain biking, snow and water activities and much more possible. With their help, choosing to attend events such as music festivals, cultural events and anything else that you might be interested in is in your control. Sonder Care Group will do their best to match you with the right support worker and the activities you like to do. Check them out at https://sondercaregroup.com.au/. It was with their help that I was able to visit and ride a section of the Great Southern Rail Trail in Gippsland Victoria – something I’d always wanted to do. We rode the section from Loch to Korumburra. I have included a slideshow of this ride at the end of this blog’s video. Most of the video was taken whilst on our most recent ride.

https://youtu.be/-z501xSH6g4

My support worker and I did the ride together and she had the right transport to carry the bikes.

Without the NDIS and assistance from my support worker, achieving these goals would not have been easy to achieve. I like to encourage people to get out there and explore your passions. With the right equipment, support and determination, your goals can be achieved. None of this would have been possible without the assisted technology and pushing myself. This may not be suited to everybody as each person’s needs are different. In a future blog, I will show you some of the other items that have made a huge difference to my life – including my everyday wheelchair. Watch this space.

I encourage you to subscribe to PDA’s YouTube channel whilst you’re checking out my video so that you don’t miss Part 2 of my blog and the many other exciting PDA videos in the pipeline.

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: