Trapped but living

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 💕

The One-Legged Sax Player on Home Modifications. Part Two

Written by Andrew Fairbairn (PDA Vice President/WA Director)

Previously I shared my Assistive Technology Home Modifications journey. This is an update, Part Two, if you will.

I engaged the services of an Occupational Therapist who has lots of experience in delivering comprehensive and high-quality Complex Home Modification, (CHM) assessments. She is very good at her work and the finished AT CHM document is a sight to behold. 40 pages of photos, recommendations and justifications for what I need. Very professional work.

From here I engaged the services of a Project Manager, (PM) to oversee the implementation of the CHM. His role was to do develop a scope of works (SOW), do all the plans, drawings, site layout, Local Government approvals and to put the job out to tender to building companies. 

I have been allocated a specific NDIA person to monitor the progress of the application and so far, she has been outstanding. 

So, where are we now as of 12 May 2020?

The SOW went out from my PM and he only got one builder from the five reply with a quote. The quote didn’t have the ramps I need, or the opening up of access to the master bedroom. I have just finished a walk through with the builder and had to explain to him what I actually required. The quote is now null and void, as it wasn’t inclusive of the above.

I emailed the PM to ask why only one builder had quoted. He said it was because of the housing boom in Perth and that they obviously had a lot of work and weren’t taking on anymore. I can accept that. I understand that.

BUT…….if I am in my chair, my CHM is life or death. If there is a fire in the house, I can’t get out. I can’t get to the toilet and I can’t have a shower as is currently the case.

This is not a problem that is going away anytime soon. I need the work done, but there is no one to do it. What can I do, except wait?

Finally, my NDIS plan is self-managed and have complete control of all my NDIS funding. Nothing will be done in my home that I don’t want, and I will be strong in my self advocacy to make sure that I get what I need. 

Stay tuned for AT CHM Part Three. What does the One-Legged Sax Player do when he doesn’t get what he needs?

My Assistive Technology

by Melanie Hawkes – PDA WA Associate Director

Hi, my name is Melanie and I joined PDA as an Associate Director for WA earlier this year. It’s my second time on the board, having completed 2 terms many years ago. 

I thought I’d share with you what assistive technology I use regularly, and the names I’ve given them. Or more importantly, the men (and woman) I share my house with. I’m known as Gadget Girl, and you’ll soon see why! 

Assistance Dog – Upton (nickname is Buddy)

Not exactly AT, but my retired assistance dog Upton is a huge help for me at home. He does a lot of tasks, like picking up dropped items (including rubbish while out walking, even coins!); opening and closing doors (even the fridge, freezer and oven); pulling my shoes, socks, scarf and hat off; pushing me up by my elbow if I fall sideways; and putting things in the washing machine and bins and on the table or in the sink. I also feel safer with him in the house. As much trouble as he has caused me (he had to retire due to behavioural challenges and has several health issues), his skills are amazing and I would not be able to live alone with minimal visiting support without him.
Here is a video I made of all the things my last service dog Happy did: https://www.youtube.com/watch?v=eJ8TV_q3uxk. Upton’s skills are just as good, if not better than Happy’s were! 

HouseMate – Tom

While doing some research for environmental controls for a new house about 8 years ago, I came across a Bluetooth device called a HouseMate. It allows me to control my mobile phone without touching it, and is also an infra-red blaster. I can use my mobile (I have a Samsung S10) with my hand while sitting in my wheelchair, but at night I can’t. But now I have my phone mounted to the side of my bed and sleep with Tom. I can do everything on my phone, like send messages, make and receive calls, read my emails and ebooks and browse the internet. I only have to tap on the button on top of Tom to have full control (or you can plug a switch into him). It scans row and column for keyboard and has a mouse function too. It’s much slower than using my hand, but is invaluable for those sleepless nights or emergencies. And a bonus is that I can control all of my infra-red devices with Tom too! Like my stereo, fan, heater, TV, and my bed (I had TADWA modify my bed controller to work with Tom). It’s the best device I have, after my wheelchair. I don’t think I could actually sleep without Tom! And Tom, because when I was reading the manual, I kept seeing “The HouseMate devices” on the pages, and over time Thomas has gone to Tom.

Pet Tutor Pro – Pete 

Pete is a pet food or treat dispenser that I control with my phone through Bluetooth. It was the first thing I bought with my NDIS funds (I self manage my plan). You can fill it with any dried dog food, and I open the app on my phone, connect Pete and press Feed. I keep Pete on a chair near the mat at my back door, and use it when I get visitors, Upton has done something I want to reward him for, or to distract him from something, like my neighbour’s dog barking. It is so much quicker and easier than feeding treats by hand. It can run on batteries or plug into the power via usb. I like to be able to move it around, so have two power banks that I use with it. It is definitely Upton’s favourite device, and I’ve found him sitting on the mat waiting for his treat a few times! 

Pet Cube Bites 2 – Jill 

Jill is a wifi camera that dispenses dog treats! I just bought the new version from an old one I bought three years ago, to monitor Upton while I’m out. It automatically detects movement and sounds and records 10-second videos while I’m out (I activate that feature when I leave, and turn it off when I come home). It notifies me when sound is detected, and I can watch live and dispense treats from my phone. It has come in handy when Upton has had diarrhea during the night. He can open the door and get outside and do his business. Then I call him inside and he shuts the door so I give him a treat and can see him go back to bed. All on my phone without me getting out of bed! Oh and why the name Jill? Well my old one was Jack, because he was black – blackjack or Jack Black. And the new one is smaller, so Jill… And she has Alexa built in so I can now use my voice to dispense a treat (and got it on sale at 60% off)!

Philips Respironics CoughAssist E70 – Cam

Thanks to the NDIS for funding this last year. As the name suggests, it’s a cough assist machine (hence Cam). It has a tube that I put in my mouth (you can also attach a face mask) and it blows air into my lungs, then sucks it out of me again. It sounds awful, but feels good. I have low lung capacity and weak muscles so find it hard to cough. If I get a chest infection, I usually end up in hospital where I can get regular and intensive chest physio to help me cough up the phlegm. Cam should prevent that. My physio set up a daily preset, which enables me to take deep breaths and practise coughing. And another preset to cough stuff up (when I’m sick). Hopefully with daily use, I can improve my lung capacity and strengthen my cough muscles and prevent hospital stays. 

Samsung robovacuum – Sam 

I love my robovacuum! I don’t like the remote control that came with him (or her. It’s named after Samantha Jade or Sam Smith – Sam sung – of course!) but I taught the signals to Tom and now use my phone to control Sam. I only have a cleaner once a fortnight, and Upton is really hairy, so being able to vacuum my floors is important to me. I always use it like a remote-controlled car, following it around. It’s pretty fun, and my floors get vacuumed at the same time! 

Sicare Light II – Geri

Tom has superseded Geri, but I still use her (she has a female voice, so named her after Geri Halliwell) almost daily. She’s a voice activated remote control. She sits on a stand next to my bed (yes, I sleep with Tom and Geri!). I can control all the same devices that Tom does, plus a fancy home phone made by Technical Solutions Australia in Victoria. So I can dial numbers by name from my home phone, and answer calls by pressing a switch. It’s definitely old technology, as I got it well before Tom, but I still have a use for it. 

TicHome Mini – G-girl 

In preparation of Geri dying, I bought a Google Home Mini and some compatible wifi devices. I have 4 light globes in the rooms I use the most, a wifi double power point,  2 Genio Smart IR devices and now a wifi voice controller for my bed! I can use my voice to turn them on or off, change the colours or brightness of the lights, or use my phone as a remote control without Tom (handy for changing the channel of the TV). I also have an Anko video doorbell that I use to see who is out the front before opening my electric door. I call her G-girl when talking about her, as if you say Google she starts listening to you! She doesn’t always get the right command, but makes me laugh with her responses sometimes. 

IOGear cordless keyboard with trackball – Alicia or Ali 

At work I have a cordless keyboard with a built-in trackball that I love. So when lockdown started due to Covid-19 in 2020, I brought it home to use. I loved it so much that I didn’t want to take it back to the office! So I bought myself one for home. It’s compact enough to fit on my tray, the keys are easy to press and I have full mouse control too. And it’s cordless, so I can leave my desk without having to put it on the desk each time. And I named her after Alicia Keys, of course!

Edge 2.0 power wheelchair – ???

I haven’t actually named my wheelchair. It gets the most use of all my AT. It is my second chair with 6 wheels. I don’t think I’ll ever go back to 4 wheels as I do love how easily it turns. But not when people trip over the back wheels…  I have tilt, recline, elevation and legs up, but my favourite part of my chair is my USB port. It enables me to charge my mobile phone from my chair, and I also have an electric hand warmer for cold days! Please suggest a name for my chair. It’s purple, if that helps? 

As for more gadgets in the future, I’m thinking of getting a heated throw rug for my bed (that I can plug into a wifi plug and turn it on and off with my voice) and I’d love some way of washing my hands independently. I can’t rub my hands together so hand gel is not a solution. There’s nothing worse than being hungry and getting yourself a snack, knowing you’ve had dog hair, treats and slobber all over your hands! It’s a good way of increasing my immune system though. 

Elle Steele’s successful presentation in PDA’s 2021 Webinar Series – now available on our YouTube channel

If you missed last Thursday’s first webinar in PDA’s 2021 Series, Elle Steele’s “10 Things you need to know to set up your own business in Australia and be successful”, you can now view it by going to the PDA YouTube channel.

Join PDA’s Elle Steele as she guides you through her own personal experiences and the valuable tools that she’s gained in her establishing and running a number of successful businesses.

This could be your first move towards your dream of financial independence in setting up your own business.

10 Things you need to do to set up your own business in Australia and be successful, including:

* What’s your reason for starting a business – your BIG why?

* Understanding what imposter syndrome is and how to work through it.

* Why systems are your best friend in any business.

* Why building a solid foundation at the start will set you up for success.

* Why you need to charge for your services (even at the start).

* Self-care practices for the new business owner.

Don’t forget to subscribe whilst you’re there.

International Women’s Day and an Inclusive World

Written by Talia Spooner-Stewart

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.

Proudly introducing PDA’s new Director for Victoria – Tim Harte

It is with great pleasure that we announce Tim Harte as PDA’s new VIC Director.

Tim’s lived experience as an NDIS (National Disability Insurance Scheme) participant, disability pensioner and rural young person drives his commitment to empowering the voice and agency of people with disabilities.

Tim has tertiary qualifications in performing arts and science and has a background in disability, social & environmental justice activism and currently holds roles in Landcare, Australian Youth Climate Coalition, and the Deakin University Environmental Justice Club.

Tim is a Board Member of the Youth Affairs Council Victoria (YACVic), the peak body representing young people and the youth sector in Victoria, and is a member of the YACVic Youth Mental Health working group and the Commonwealth Children and Youth Disability Network.

Tim strongly supports the human rights-based model of disability and advocates for equitable access to services and meaningful participation and inclusion of people with disabilities in society.

Please join us in welcoming Tim to the PDA Board.

We look forward to working with Tim and capitalising on his experiences, energy and commitment to driving positive change in Australia’s disability landscape.

PDA announces the first webinar in its 2021 Membership Series and you’re invited.

In supporting the disability community, PDA recognises and celebrates the potential value that self-employment offers in helping people with disability overcome barriers to work.

Research has revealed that “*people with disability are 40 per cent more likely to be self-employed than their able-bodied counterparts”.

If you’re a PDA Member and you’ve been thinking about starting your own business, have a business idea, want help in making your entrepreneurial move or simply want to learn about setting up a business, PDA’s first Webinar for 2021 may inspire you to take the first step towards financial independence.

Elle Steele is a successful entrepreneur, business owner, former Paralympian, Model, Optimist, Mentor and Motivation Queen.

As Presenter, she will provide the framework to setting up your own business and taking control of your employment options and your financial future.

This EXCITING FREE WEBINAR will be run on Thursday 25th March at 6pm AEST and you can register by clicking on the button below:

We look forward to seeing you there.

*https://probonoaustralia.com.au/news/2020/06/people-with-disability-turn-to-entrepreneurship/

PDA Youth Alliance is now PDA Youth Network

PDA’s membership initiative for 18-30 year olds has rebranded and will now be known as PDA Youth Network. 

In line with this our online socials have also been renamed and will now be called “Hangouts” and will run monthly on the third Thursday of each month.

This decision was made following feedback and discussion from members and the Committee.

We believe that these new names positively reflect the importance and need for us to have our own community that understands our needs and wants.

With your help, we want to build up PDA Youth Network and make it truly representative of you, our fellow members.



Don’t forget to register for this Thursday’s PDA Youth Network’s first Hangout for 2021.

It’s sure to be a lot of fun and a great chance to catch up with friends, make new friends, get social and have fun.

You can register at:

https://us02web.zoom.us/meeting/register/tZMrc-GqrDwpHdWVcSOD2mVq4XbwP9P2ZOv4

7pm Sydney/Canberra/Melbourne/Hobart
6:30pm Adelaide
6pm Brisbane
5:30pm Darwin
4pm Perth

Hope you can join us.



We also encourage you all to get involved with the running of our Youth Network and helping us to make it as big, relevant and successful as possible.

If you would like to play a role (big or small) or have a suggestion or idea, please get in touch with us either via our socials or by emailing promotion@pda.org.au.

We look forward to working with you to make PDA Youth Network a community that gets and supports young Australian adults living with physical disability.

💕 Kathryn, Jonathan and Nick