Written by Tammy Milne – PDA TAS Associate Director

The most terrifying experience of my life was the day that my voice was taken away.

For most of my life I have lived with paralysed vocal cords. If I was a horse I would have been shot! In horses it’s called roaring and means they struggle to breathe and make a noise like they are roaring for breath and that’s exactly my experience. Most people breathe through a nice big fat airway like a hose pipe, with me it’s like I breathe through a piece of spaghetti, dragging each breath in slowly and using all my energy to do so. It feels horrible and sounds horrible and basically it is horrible, but I have learned to live with it.

Then came Covid-19. I contracted it in April. My spaghetti pipe was congested, but somehow I coped ok. Then the next month came, along with virus number two and then virus number three.
I presented at the ER every day for four days, unable to breathe and really struggling. The ER doctors finally wrote a referral to my GP to ENT services in Hobart. After some issues with miscommunication, the referral was sent through.  Two weeks later I was in Hobart’s Specialist Clinics. 

My lovely ENT doctors Raj and Nicco were like excited children when they looked down my throat with the scope. Like I knew I was bad and had been getting worse with age and since covid, but I had no idea that it was that critical.  I was breathing through an airway space of about 2mm and my vocal cords were static – neither opening or closing as normal vocal cords should.

I was categorised as CAT 1A which is basically top of the list of elective surgery and was told I would be operated on within a month after some other tests were completed.

So on the 5^th October I presented at Wellington Clinic for my pre-admission. I spent the next day and a half trying to have as much fun as I could, which also included getting a guardianship order to give my daughter power of decision making  if things didn’t go well. Not the state guardianship orders, but my own private lawyer drew them up. Something that I suggest everyone should do before something huge like this.

At 6.45am on Friday 7^th October, I presented for admission and at about 11.30am I was sitting in recovery drugged to the eyeballs – breathing like a marathon runner but not able to speak. My voice was gone. The operation of which I had consented to save my life involved cutting a section of my vocal cord to make the opening to my airway bigger. For this to happen and for recovery I was given a tracheotomy. I now breathe through a pipe in my neck. This will be temporary as my vocal cords heal.

So what happened next?

I have a second language. I use Auslan (Australian sign language) – the language of the Deaf.  So as soon as I woke up from surgery I defaulted to sign. Many people who have a second language do this when they are unable to communicate in their first language. The thing is not one of the hospital staff could sign AT ALL. 

The more I couldn’t communicate, the more frustrated I became. I am an advocate. I self advocate and I advocate for others. Communication is part of my being – as it is for everyone. Can you imagine what it is like to wake up with your voice is gone? It’s like your autonomy is gone. Things happen to you rather than you having a say and being able to ask questions. The fear is real. Your control is gone and you are helpless.

I was given a communication whiteboard early on but, as my frustration levels increased and my fear escalated (especially after the drugs wore off), my handwriting became increasingly hard to read. It’s funny as when I did a prac on a prep class they actually told me my handwriting was terrible. Out of the mouths of babes!

I continually asked each new nurse, doctor, physio, speech therapist, dietican if they could sign? They could not. By day two  my daughter was coming into ICU , interpreting regularly. She grew up with Deaf kids in her class throughout her schooling and of course I have signed with her throughout her life. On one occasion she sat and interpreted for 4 hours straight. Relaying my fears and anxiety to the nursing staff.

It wasn’t until day 8 post surgery that a professional interpreter was booked to come. I was to have my tracheotomy changed and she was able to voice all my concerns that I signed to her about what was going to happen. I could have cried with gratitude. I could sign, “ouch that hurts” as the procedure  went on! She was there to be my voice and I could communicate freely again.

Coincidentally that night a young Doctor, Dr Dave, came to change my cannula and he too could sign. However, he was from Ireland so his signing was like the difference between German and English. But he understood and had seen how vital sign language was for his sister at home in Ireland using sign language. We had a good chat with writing things down and mime.

After working as an interpreter for the Deaf for the first 16 years of my Education Department career, and being involved in the Deaf community, like most people I still only had an empathic view of what it’s like to not be understood. Of having your means of communication not understood by the wider community, of the discrimination, the miscommunication, the lack of control and the loss of autonomy. Like them, things happened to me rather than my being involved in decision making with a clear understanding of what was going on. I couldn’t ask my questions freely. I was silenced.

This experience has taught me so much! Sign language needs to be a part of our health system. There needs to be charts of key word signs in each room with words like toilet, food, drink, pain, yes and NO! There needs to be more access to interpreters in ED. Imagine coming into ED and not being able to communicate your needs? There needs to be sign language classes built into nursing courses at University. 

The benefit of this is that student nurses will see what it’s like to be from a background where English is not your first language. It’s not just the Deaf who use sign language. Many people with intellectual disabilities also use key word sign, just like Dr Dave’s  sister in Ireland. Lastly, we need to introduce sign language to practising nurses on the wards. We could run some classes. Heck I’m up for it! If just one nurse on a shift had at least the basics of sign, imagine what that would have done for me and for my comfort during my hospital stay. So I plead with government to listen to my story and move forward with a plan to make communication more inclusive for Deaf and intellectually  disabled people in hospitals and for people like me. My experience was only for 8 days, but those 8 days were the most terrifying and frustrating time of my life. My voice will come back, but the lingering memories of being isolated and alone will not leave me.

A recent Pro Bono Australia article (https://probonoaustralia.com.au/news/2022/08/research-shows-economic-cost-of-declining-mental-health) highlighted the findings of an “Impact Economics and Policy report” commissioned by a number of organisations including the NSW Council of Social Service – NCOSS (NCOSS) and the Mental Health Coordinating Council.

This report included the rising rates of mental health disorders during the Covid-19 pandemic, the associated economic and social costs and the spate of natural disasters that have exacerbated the situation.

“People with a disability are four times more likely than people without a disability to experience high levels of psychological distress and are up to four times more likely to die during a natural disaster.”

In March this year a coalition of 40 leading disability rights (including Physical Disability Australia), advocacy and peak body organisations wrote an open letter to politicians across the country prior to the election, in which they demanded improved disaster and emergency responses for people with disability.

You can read this by going to https://qdn.org.au/wp-content/uploads/2022/03/Final-Joint-Open-letter-leave-no-one-behind-310322.doc.pdf

With flood devastation currently impacting much of Australia, our Government must action the development and implementation of a comprehensive and disability inclusive disaster preparedness plan to reduce the human impact of disasters.

#LeaveNoAustralianBehind Mr Albanese.

Featuring the Hon. Bill Shorten MP (Minister for the NDIS) and Co-Chairs, Professor Bruce Bonyhady AM and Ms Lisa Paul AO PSM, THIS WEBINAR IS OPEN TO EVERYONE and will be a great opportunity to hear more about the Review and how you can get involved.

AUSLAN interpretation and live captioning is available for attendees requiring these services.

Simply join the webinar online at the starting time by going to:

https://healthevents-au.webex.com/wbxmjs/joinservice/sites/healthevents-au/meeting/download/be681f4970cb49c084737ac2d49cea93?protocolUID=3eee09cc71cc70d22581df10e18d071c&isIPADAsMobile=true&MTID=m0248205eaa4ec77575142ab4c0f14d6c

YOU WILL NEED WEBEX MEETINGS. If you don’t already have this make sure that you have it installed ahead of the webinar by going to:

https://apps.apple.com/au/app/webex-meetings/id298844386

OR

you have the option to call in (AUDIO ONLY) on 61-2-9338-2221 at the time of the webinar.

The webinar will also be recorded for those unable to attend the live event.

Coming up on the 2nd and 3rd of November, Australia’s Disability Strategy National Forum will take place and you’re invited to join this important event via livestream.

Providing an opportunity to participate in panel discussions with industry experts and community representatives with disability, you’ll be given a chance to have your say on Australia’s Disability Strategy 2021-31. This is a Strategy that will shape our country’s disability policy in crucial areas such as employment, housing, education, health and wellbeing.

Key speakers will include:

• Dylan Alcott AO (Australian of the Year)
• Amanda Rishworth MP (Minister for Social Services)
• Dr Dinesh Palipana OAM (Doctor, Lawyer, Disability Advocate, Author, PDA Ambassador)
• Caro Llewellyn (Wheeler Centre CEO)
• Sandy Jeffs OAM

Registrations are limited and close 1 November 2022 so don’t delay.

REGISTER NOW by going to:

https://adsnf.bettercast.io/?mc_cid=c256bb16ea&mc_eid=fca9123436

Auslan Interpreter and live closed captioning will be available for the live stream. More information on using the platform will be sent closer to the event.

If you have other accessibility requirements or questions, please let us know by sending an email to disabilityreform@dss.gov.au.

One of our most requested webinar topics has been around relationships and the impact that disability can have on connections with family, friends, partners and even relationships with ourselves.

In the first part of this two part series on Monday 10th October at 7pm AEDT, we will look at and explore the stresses, struggles and interactions that can affect the dynamics of our relationships with family, friends, carers and support workers, sharing personal stories and what did and didn’t work in resolving these issues and concerns.

In the second of this two part relationship series on Tuesday 11th October at 7pm AEDT, intimate relationships will be covered, along with the importance of self love and learning to treat yourself with kindness and respect in order to ensure personal growth, wellbeing and not settling for second best.

To register for Part 1 (Family, Friends, Carers, Support Workers) go to:

https://us02web.zoom.us/webinar/register/WN_u7n0wuQMRPSfGvx4LSUJYw

To register for the “adults only” Part 2 (Intimate Relationships) go to:

https://us02web.zoom.us/webinar/register/WN_sYyGKuP1SBmkbNw3jJ03JA

We hope that you will join us for these webinars.

If you not able to attend these live events, they will be made available to view via the PDA YouTube channel:

https://www.youtube.com/channel/UCMyTzhTbs2oLH-WZR18zX2Q

It is with sadness that I write to inform you of the passing of one of PDA’s long-standing members, Janine Neu.

I served with Janine on the Committee of Management of People with Disabilities WA from 2017 to 2019. I fondly remember very robust discussions regarding finances and how to best utilise them. This usually involved me wanting to spend, and her telling me that I couldn’t.

Janine was a very quiet person, reflective, until she had something to say, and then you knew you were being spoken to!

On behalf of the Board, Staff and Members of PDA, we would like to offer our most sincere condolences to Janine’s partner, Bernard and all her family, friends and colleagues.

RIP Janine.

Signed Andrew Fairbairn (PDA President)

Written by Andrew Fairbairn – PDA President/WA Director

A close friend, ally and PDA member, Clare, attended the 15th Conference of State Parties to the Convention on the Rights of Persons with Disabilities (COSP) at the United Nations Headquarters, New York, from 14 to 16 June 2022. At the conclusion of this she was sent an invitation to attend the APMCDRR in Brisbane.

She was very excited about COSP and tried to explain to me what it was about. I didn’t really understand, so she said that we must go to Brisbane together and then I would get it.

Taking her on her word, we booked flights and accommodation and headed off.

Well, what I saw, and what I experienced was mind blowing. 

On Day One we were invited to attend a networking session and meet people with disabilities from all over the world. We were asked to attend a meeting to discuss the Mid Term of the Sendai Framework for Disaster Risk Reduction (DRR), https://www.undrr.org/publication/sendai-framework-disaster-risk-reduction-2015-2030 which is a great read on its own. I was able to talk on behalf of PDA and the work we do in Australia and how it fits into the framework. Thanks to Queenslanders with Disability Network (QDN) and People with Disabilities Australia (PWDA) for hosting a fabulous lunch. 

Day 2-4 saw meetings and discussion on topics such as:

• * Experiences and Challenges of Emergency Management Volunteers to Enabling resilient, sustainable, and inclusive infrastructure transitions in Small Island Developing States

• * Gender considerations in DRR 

• * Climate Change

• * Building resilient Communities by investing in DRR Literacy for proactive Actions focusing on “Leave No One Behind”

I got to meet some very motivated people from all over Asia Pacific including Setareki Macanawai, the CEO of the Pacific Disability Forum from Fiji, John from the Tongan Disability Advocacy Network and Kepueli Ngaluafe, a very recent amputee from Tonga who works in the Ministry of Finance.

The days were full, but for me, the real work was done at night. I had the opportunity to share PDA with some academics from the University of Newcastle, the University of Melbourne, and the University of the Gold Coast. All of them are keen to connect and, hopefully, do some paid collaboration with us around DRR for our PWD here at home. I got to meet some fabulous people working in DPOs in Australia, some folk from AFDO (Australian Federation of Disability Organisations), some folk from WWDA (Women With Disabilities Australia) and some amazing people from QDN.

I would try to explain what this it was like to be at this conference. I have been to way too many conferences, but this was so worthwhile and I can see great things coming out of it for PDA, for PWD and for the whole of Australia.

When it rolls around again, who is coming with me? 

I guarantee, you will not be disappointed.

Written by Melanie Hawkes – PDA WA Associate Director

I received my first power wheelchair when I was three years old (almost 40 years ago).While it is a struggle some days (when my support worker can’t come to get me out of bed, for example), it helps to have a positive attitude. There’s no point complaining about what I can’t do. My parents raised me with a can-do attitude, and I am grateful for what I have.

I don’t need pity. It’s not a “shame” or “a disaster” (an actual comment from someone recently) that a childhood illness paralysed me from the neck down. I am fortunate it happened before I turned two, so I don’t know what I’m missing. My wheelchair doesn’t confine me. In fact, I quite like having a physical disability. I have a great life. 

There’s actually many advantages of having a wheelchair. So many, that I compiled a list:

• * I always have a seat. Crowded bus or train? No problem. The only time I wish I didn’t take my wheelchair everywhere is the cinema. The leather recliners look so comfortable. (On a side note, why should I buy a ticket when I take my own chair?)

• * I never get sore feet. I can walk my dog, wheel to the shop and sit in a queue without getting sore feet at all. And no, my bum doesn’t get sore from sitting down all day. I have a very comfortable cushion. 

• * Got lots to carry? I’m your girl. I can carry shopping bags on the back of my chair and drinks on my wheelchair tray. As long as I’m not too wide for standard doorways, and I don’t hit a bump and spill my drink. That is why you don’t drink and drive, right? 

• * Parking is amazing. As long as you have your ACROD parking permit, you can choose any big blue park. They’re conveniently located right by the door of the shops, library and cinema, so you never have to “walk” far. 

• * I get a Companion card. Every time I book a ticket to a show, sporting event or ferry ride I get a free ticket! This is so that I don’t have to pay for my support person to attend. I wish airlines would honour it too.  

• * Some of us are lucky enough to get assistance dogs. They are trained (and licensed) to go everywhere, including on public transport, in shopping centres, restaurants and the cinema too. They can do a range of tasks to assist, like picking up dropped items, opening and closing doors, taking my shoes and socks off, and pressing lift buttons. It’s great being able to go everywhere with your best friend. My dog Upton isn’t licensed now, but he still helps me at home.

• * I never have to pick up dog pooh, or clean the house, or iron clothes, or wash the dishes. My support workers get paid to do that! 
  
  
• * I never have to sit on a cold toilet seat. I have a nice padded commode that I can move out of the cold bathroom, or sit under the heat lamp to do my business. 

• * I can’t faint or fall over and hurt myself. Or trip over a cat or slip on wet floors. Especially handy when I’ve had a few drinks. I can still swerve and hit something, but not as painful as falling on the floor (I imagine it to be).

• * I can’t be taken in the back of a police wagon. Well they could try, but I wouldn’t be much good without my wheelchair. I was on holidays once and noticed the town’s police station had steps up to the front door. You beauty, I thought to myself. I could get away with all sorts while I’m here. I can’t get in the station if I’m arrested! 
  
  
• * My pants won’t fall down. I can wear clothes that are too loose, have a stain or tear at the back, or if they’re too tight, have the zip undone! I’m sitting on them, so you wouldn’t notice. I have two skirts that have small tears at the front. Now I wear them back-to-front! My mum scorched the back of my year 12 ball dress, on the day of the ball. No problem, I still wore it, nobody knew except us. 

• * My shoes don’t get worn out. They last many years, unless Upton chews them when he pulls them off. If I’m sick of wearing some I pass my old shoes on – they’re like brand new!

• * I can’t burn my feet on hot pavement or sand, or step on broken glass. That’s gotta hurt! I get someone to check the temperature of the floor before walking Upton on hot days. 
  
  
• * I always have a driver. I have a van that my support workers drive me around in. No matter where I want to go or how much I drink, I always have someone to drive me places. Or I get public transport or a maxi taxi. But either way, I have a driver take me places. I like not having the responsibility of driving, but I do have a back-seat driver’s licence!

There is plenty to love about having a physical disability. I’m grateful for all my support workers who help me with the things that I can’t do, and for the NDIS that pays for them. 

Can you think of any others?

Congratulations to Kurt Fearnley on his appointment as new NDIA Chair, and also to Graeme Innes, Marie Diamond and Dennis Napthine in their roles as Directors and Rebecca Falkingham as Chief Executive.

With the number of people with a disability serving on the board now sitting at five and with Kurt being the first person with a disability to chair the board of the agency, there is great hope that Australia’s disability community will finally be seen and heard and that the NDIS will finally reflect and uphold the intended principles that accompanied the Scheme’s formation 10 years ago.

https://www.9news.com.au/national/kurt-fearnley-national-disability-insurance-agency-chair-ndis-federal-politics-news/cbdbbbd3-f950-4bbd-9de3-ad56632f8eca

Healthy, honest, dependable and loving relationships are important for everyone – but perhaps especially so for people living with disability. 

In our upcoming 2 part webinar around relationships (Monday 10th and Tuesday 11th October at 7pm AEDT), we will both be looking at the impact that disability can have on relationships and sharing stories and advice based on personal lessons learnt from journeys taken alongside others through life.

In part one of our relationship webinar, our panelists will share their thoughts and experiences around relationships with family, friends, carers and support workers (both positive and negative) – giving insights into past and present relationship issues and how they personally worked to address and overcome these problems and concerns.

From the dynamics surrounding carer expectations and duties to transitioning to independence as an adult, parent/child relationships, sibling struggles, changes to friendship circles and interactions, and the invisible line between support worker and friend, this first webinar will cover issues that are familiar to so many.

In part two of our relationship webinar series, our panelists will share their experiences, thoughts and advice on intimate relationships and work to normalise this topic and knock down the stigma and untrue stereotypes that surround disability and intimacy. 

This webinar will look at the intrinsic desire, need and want for loving, caring, physical and emotional relationship with others – regardless of individual circumstances.

The negative cultural and societal stereotypes and prejudices that can surround people living with disability in forming and maintaining an intimate relationship will also be explored.

And our panelists will also breakdown the false assumption that disability renders a person incapable of being sexual, passionate and involved in an intimate, romantic and fulfilling relationship, and that intimate relationships between abled bodies and those living with a disability are solely founded on dependency or fetish-based relationships.

To register for Part 1 on Monday 10th October at 7pm AEDT (Family, Friends, Carers, Support Workers) go to:

https://us02web.zoom.us/webinar/register/WN_u7n0wuQMRPSfGvx4LSUJYw

To register for Part 2 on Tuesday 11th October at 7pm AEDT (Intimate Relationships) go to:

https://us02web.zoom.us/webinar/register/WN_sYyGKuP1SBmkbNw3jJ03JA

AS PART 2 LOOKS INTO INTIMATE RELATIONSHIPS AND WILL CONTAIN ADULT CONTENT AND DISCUSSION, ALL ATTENDEES MUST BE 18 YEARS OR OLDER. AS SUCH, IN REGISTERING TO ATTEND THIS WEBINAR, ALL REGISTRANTS ACKNOWLEDGE THAT THEY ARE 18 YEARS OR OLDER.

We hope that you will join us for this interesting webinar series.