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 5th 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 7th 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 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:
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.
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:
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?
My disability is a very visual one that without correct clothing can not be hidden. For many years I was embarrassed, in fact so self conscious it would stop me from living a life like so many others.
Being an emputee can put restrictions on many of the things you do in life, but my internal battle with self image in my late teens through to early adulthood haunted me. When I came to terms with the fact that I was gay it was amplified. I was able to camouflage my sexuality, but my disability was always forefront.
I did not know any other amputees when I was growing up. All the amputees I met were at clinic and they were much older. Even in medical and clinic situations, my stump was a close guarded appendage that I was extremely uncomfortable to display – let alone to have it touched. When I lost my leg I was 10, school was rough – we all know that kids in their innocence can be cruel with things that they do not understand. I myself did not really understand. When everyone else was running and jumping, I was on crutches and just about to start the journey of rehabilitation. Moving into high school I was struggling with identifying my sexuality. This, topped with the day to day comments and taunts about my disability, caused me to pull back, caused me to question my place on this planet.
Coming to terms and understanding about my sexuality even at that point in time was an easy transition. It was there but, unless I chose to disclose it, no-one would ever know. I was old enough and (thanks to early internet gained information) able to form a circle of friends who helped me understand who I really was. But I felt so disadvantaged as I was now gay with a disability in a harsh world. Who would want to enter into a relationship with me?
Technology in limbs was moving fast and advancements meant I could walk (Gate) more naturally and I could, with long pants, feel like I was blending in. However, I was always self conscious of the fact that I was so different.
I was now of an age where real relationships could form, both on the emotional and physical sides, but I was so guarded. Quick interludes could happen, but I was unable to commit to anything more. To do so would mean that I would have to face my fears. The fear of judgment. The fear of questions. The fear of showing the most intimate part of me.
In my life I have had 3 real relationships. I sabotaged the first 2 with my insecurities. Reminiscing on them, I feel guilty that someone was prepared to commit but I was just so insecure with regards to my disability that I destroyed any chance. The third was so stubborn that he saw through my subterfuge and used understanding and compassion against me. He was able to understand my struggles with my disabilities and was there for me – without ever asking questions or showing judgment. He was in fact my unspoken support in life. Not just my partner, friend, confidant and lover – he was my disability support person who I unwittingly relied on for so much.
In our relationship I never let him see me fully “disabled”. It was there, but I never let him see my stump. Never let him see me without my limb on – no matter the pain and suffering I had to sustain. I couldn’t. I was always in bed first so he would not see me crippled. One night he came in and sat on the edge of the bed with a cup of tea for me, as he did many nights to chat. This time was different. He said that he’d noticed that I was struggling, limping and in noticeable pain. I tried to disregard it as nothing, but he pushed asking me what was going on. I felt cornered and vulnerable. He said that he wanted to know. He needed to know. He could feel I was suffering and he loved me and it hurt him that I could not talk to him. Reluctantly I explained that I had a pressure sore that was inflamed and causing extreme discomfort, but that it would soon be gone. He asked so many questions that I had never wanted to answer. I did though. Then he asked to see my stump – something I had never let him see. Something I never wanted to share with anyone. It was my dirty little secret that I never wanted to see light of day.
I gingerly slid it out from under the covers, revealing its pale pasty inflamed self. He looked at it with so much compassion, then he looked me in the eyes and asked if he could touch it. I was welling with tears from the fear. The fear that he would be repulsed. The fear that he would see just how weak I was. The fear that he would see me as a crippled freak.
He put both his hands on my stump, one either side of my knee. He was so gentle. He whispered how he wished he could take away the pain. Then he lowered his head and kissed my knee and from that moment I just felt safe, I felt free, like the weight of the world had just escaped me. In that moment I knew that he truly loved me for all of me. He had so many questions. We had been together for almost 8 years and not once had he asked. He just knew without asking how I felt about my disability.
From that very moment all my self doubt about my disability just washed away. I lost the feeling that I was a freak who needed to hide that part of me from the world. It was a strange feeling that took me some time to come to terms with. All these years of feeling this way had become a part of me, one that I know I used to push people away before they got too close. It took the love and compassion of someone understanding me for me.
Something that should have been available to me when I was younger.
You see when I first lost my leg, like most amputees, I grieved for it. In losing a huge part of yourself, you feel disconnected, you become different from and to everyone. I had no real supports in this to help me understand that I am still me, with just a little less of the physical me. My family did their best, but it felt more like pity and remorse for what they felt they had done to me. We live in a world that is just finding its understanding, I mean real understanding where things outside of the “normal” are normal.
Being part of an organisation like PDA to me is normal. It offers supports and information to those who need it when they need it. In a world surrounded by so many you can feel so isolated. I wish that groups like PDA, made up of people just like me, were there when I obtained my disability. I lost so much of my life living with insecurity, self doubt and what I now know as resentment. It just took one person to change my life for the better. Disability has been around since the dinosaurs, but still the information and supports are not getting to where they need to be. I used the internet (with its limited capability back then) to help understand my sexuality, but the information I required to help me understand my disability and issues surrounding it were just not there. The other thing I have taken away from this, is that the people who love us most and are close to us are our unspoken heroes. They take up a role we never expected or wanted them to have.
PDA’s talented Tammy Milne has written an informative article for “Tasmanian Times” around her recent mobility scooter accident , which involved a hospital visit or two and additional accessibility issues stemming from ”becoming more disabled”.
As usual, Tammy words not only invite us along on her journey navigating disability issues, but also draw attention to important topics and the need for action.
In this article, she challenges Australia’s apathy and existing roadblocks in providing adequate, accessible and necessary housing for our ageing population and disability community.
It’s a great read, so grab yourself a cuppa and head across to:
www.tasmaniantimes.com/2022/09/a-shower-a-shower-my-kingdom-for-a-shower/
Chances are that if you have a disability, you know that it is going to be a central topic in your life. Though most avoid direct questions or expect an answer that focuses on the downsides. Hidden in all the discussion of barriers, are stories of overcoming.
Kids are the most blunt. They make me a laugh, asking their parents “why is that man using a ….(walking stick, wheelchair or walker)? He’s not old?” Usually followed by a parent shushing or quickly whisking them out of earshot. I’ve learned to welcome the questions and seek out opportunities to highlight that people living with a disability are people. We are neighbours, friends, family members, co-workers and even employers.
I live with a musculoskeletal movement disorder and in addition found out that I have been living with Autism for the past 30 years. Apparently, I was one of the last people to realise I live with Autism. Colleagues in the disability sector just assumed I already knew. Though in hindsight I suppose spending your spare time reading the NDIS ACT or legislation isn’t exactly neurotypical. Though for me, it’s normal; my normal.
The National Disability Insurance Scheme (NDIS) is an insurance scheme that is available to support Australians with significant disabilities both current and in the future. It’s a pledge to help address the barriers in the lives of people that seek to have an ordinary life and to do things that most take for granted.
For me the NDIS enabled me to capitalise on my ability to fall through the cracks and find gaps in services by helping others to avoid the same issues. The NDIS funds me for 10 hours of support on the job a week helping me to overcome disability related barriers. Now as a result, I am the founder of Ability Links. I employ 12 people (most of whom have a disability or a family member with a disability) and support many people with disabilities as a registered NDIS provider.
Across 2020-2021 the NDIS invested $23.7 Billion into the lives of people living with a disability, employing 270,000 people and returning an expected $52.4 Billion to the Australian GDP in ancillary benefits (Per Capita, 2021). This is in addition to providing dignity to people with significant disabilities, and the opportunity for greater self-determination. That is an astounding 2.25% multiplier effect resulting from indirect benefits associated with NDIS funded supports. The injection of funding into the care and health sector helps to provide stability for Australia’s most vulnerable people and employment security for a number of industries that have innovated to meet our needs, then providing the opportunity for Australia to enter the world market with inventions and businesses based in the sector.
As a person originally hailing from a small country town in rural NSW, I know all too well how hard it can be to access health services away from capital cities. The NDIS has thrown a lifeline to people wishing for the lifestyle living in the bush brings, but also provides much needed resilience to embattled regional practices. With years of fire, flood, drought and a Medicare price freeze that has likely seen all three. It is a wonder that Allied Health still practices in rural areas – especially with strains to cost of living and fuel. The NDIS again provides stability, and the consistent support provided by allied health to the disability community means that they have a better chance of retaining staff. If they keep their doors open, someone is there the next time the local footy player has a sprain, or a workplace rehab visit may not mean a two-hour drive to the next regional centre. If rural practices close it isn’t just a handful of jobs lost, but also the goodwill, sponsorship and the money outside the local economy that is lost. This hurts everyone.
I was born with several malformations of the spine and a dodgy nerve that causes spasms. I’ve come to rely on Allied Health to keep me moving. For years this meant hours of travel to get support to manage my disability. At 17 I remember being told that by 25 I’d likely rely on a wheelchair. With few role models to tell me that a wheelchair or other assistive technologies are not to be feared, I felt like I had been punched in the guts. I was afraid of being different and of missing out. Today, coming to know the disability community and the intelligence, resilience, and potential within I’ve come to embrace my differences.
In the past I worked desperately to live in denial about my limits and disability, eventually resorting to training 3 hours a day and getting involved in youth work and fitness to keep up my routine. However, life happens. I ended up being crushed by a forklift attachment that fell on me and tore through the heel of my left foot. Unable to train and unable to care for myself, I was in dire straits. I ended up living in a motorhome for years, with little support or assistance from family.
No running water, no septic and unable to really do a great deal on my feet. Eventually I was able to make the bus into a home, build a water filtration system and other modern conveniences all whilst seated. Eventually moving from regional NSW and youth work to study Psychology and Social Sciences at the University of Wollongong, where a scholarship from the Movement Disorder Foundation provided a much-needed boost to my opportunity.
Today I use a walker, a wheelchair, a mobility scooter or one of my many walking sticks to get around. These things bring me freedom and allow me to make the most of my ability safely. I especially like my sticks. A walking stick doesn’t have to be cold and clinical; I have many different types, shapes and handles. They are an extension of me. One question I’ve been asked is which leg is my bad leg? The answer is both. Whilst one was crushed, the other falls from under me due to a nerve that is impacted by my spine. Having the right assistive technology helps me to get on with my day safely. It may highlight me as different, but that isn’t necessarily a bad thing. Sometimes they act as a trigger for compassion. Whether you ask for it or not….
After moving to Wollongong and starting my first year at University, I unfortunately had my right leg drop out on some stairs, leaving my ankle on my left leg shattered when I fell twisting my foot completely backwards. I still regret not getting a picture.
As a student of the social sciences, the word social capital is used a lot as a predictor of resilience. That is, the more people we have in our lives (friends, families, communities, acquaintances), the more likely someone is able to bounce back from a setback. Moving six hours from home, I didn’t know a lot of people. Outside of the NDIS there are not a lot of options for support. The NSW health system and community supports were limited. A house with stairs while using a wheelchair is not ideal, so I was mostly housebound. To go out, I had to get out of the wheelchair, then bum shuffle my way down the stairs with the wheelchair in tow, then get myself back in the chair. It wasn’t a great situation.
The Makerspace at the University of Wollongong was a welcome reprieve for me. The “space” was truly one of the most inclusive communities I have experienced. I regularly visited in a mobility scooter to be welcomed by friendly faces and people welcoming working together to make their lives better. It was there I built the Kangaroo Crutch that helped me to get out of the chair by transferring my weight from my ankle to my knee. The concept of the Makerspace is something I love and my experience is what led to Ability Links creating a new Makerspace for the disability community of Wollongong.
I remember one situation, just after getting out of hospital. I was on campus in my chair. Being a new chair user, I had to use the strength of my triceps and go backwards up hills. One day I ended up getting a wheel stuck in the garden bed out the front of the bus terminal at UOW and quite literally catapulted myself into a bed of woodchips. I was mobbed by onlookers and people wanting to help. I felt extremely embarrassed, but it helped me to understand that people are willing to help and that it’s ok to ask. That said I distinctly remember an experience where an international student saw me struggling and took hold of the back of my chair and pushed me to the library. It was considerate of her, but I didn’t ask for the help, and she didn’t quite understand that I wasn’t heading to the library, but instead the Unibar. That experience highlighted to me that quite often people make assumptions as to the needs of people with disabilities. Here’s a tip: Ask before helping. The gesture may be welcomed, but just pushing me away essentially felt like I was being kidnapped.
Finding a semi accessible home for myself with good housemates was lifechanging. It meant being able to access the community. Eventually it led to a job helping others with a disability as a Support Coordinator, where I have found my experience, skills and past challenges have real meaning. Gaining support from the NDIS really opened opportunities for me that were just out of reach. For me it means greater safety and security. While the NDIS isn’t a direct payment to me, its investment in my life has meant not having to be in vulnerable living situations. It has meant being able to have access to the community, education and to take control over my future. It has given me equity and the opportunity to be at the same starting point as my peers.
The medical model of disability focuses on changing the individual. The social model of disability focuses on changing communities and the lives of people with disabilities. Most of us can’t and don’t want to be “fixed”. We want to be accepted and included. We have impairments that need to be addressed to be meaningfully included. With the NDIS and the connections I have built whilst supported to get out and about, I am better prepared to use my abilities to their full potential. With support I have been empowered to take my life into my own hands.
I see how much the community of People with Disability has to offer, though we must help people move past shallow judgements and break stereotypes entrenched by the medical model. We; people living with disabilities are more than our barriers. Inclusion starts with intentional conversations. True equity comes from understanding and being heard. That means sharing our stories, speaking up and showing what we can achieve when our needs are met. I dream of a day where people are judged on merits, and people living with disabilities are represented in all areas of society, have a place at the table and have a meaningful say over how we live.
This year I was fortunate to win the Sector Innovation Award at the Developing Australian Communities awards gala. My business has just celebrated its second birthday and I am pleased with what we have accomplished in this short time given an overnight success is ten years. While we have much to do in becoming set up then established, we are currently writing a short film, 2 musicals and a series of picture books which will also be toured on stage in Auslan. All this while my body is a full time job. This required the right team of people which I didn’t get until age 43.
Over the years people have been amazed when I share my dreams and aspirations. They assumed i had already achieved a successful music career despite my struggles, which couldn’t be further from the truth. While being seen as enjoying the lifestyle I desired yet did not have is no compensation, it did present me with something I had not considered. How others saw me. Their assumed success was a win and that helped fuel me to do what I could in preparation for the day it was possible. No matter how much my disability affected my body and therefore mental health tempting me to give up, I had to hope for a future opportunity. I was not picky. I would accept what came my way. From age 16 I volunteered in the community to learn whatever I could. I said “yes” to any opportunity. Due to this, I had experiences that I had never dreamed of. They were one off so did not affect my health adversely and they were exciting.
My disability had not been diagnosed during that time. Neither had my medical condition, ASD, hearing loss or PTSD. This would not happen until I was 38. This lack of information Hindered any success attempted. It takes years after diagnosis to work out the best management regime for each condition. This then becomes the principal focus. The lack of support also was a hindrance meaning extra years were required to get on my feet.
Fast forward to 2020 when the world was united by lockdown and the online access the disabled community asked for prior, yet deemed too hard and expensive was now suddenly available to all. The world opened for the first time in my life. It was thrilling to enter the arena as a participant. Often I wasn’t able to be a spectator! Would life begin at 41? This was the time where support started to become available. It was 2 years before the right team came togther. During the 25 years it took to arrive at my future, I had been taking advantage of all free webinars or local workshops run by my council in preparation. I knew with my necessary lifestyle only a small portion of that information was appropriate to me, but I trusted it would be enough and it was. I leapt into action sure of myself and grateful for the required support. I had sought support my whole life of course and when it didn’t come year after year, I focussed on my wellbeing. It got to the point I didn’t believe it would come. The only option left was to find peace in my reality and make a new life. One possible with little to no help.
The saying “If you work hard enough you will succeed” is shared a lot yet how much merit does it hold? Yes this character trait is desirable and necessary, yet no one can achieve goals on their own. Regardless of whether we are poor, disabled, part of any marginalised group, or well off with health, we all need the correct support to succeed alongside grit. That support tends to be sporadic for those in marginalised groups if available it at all. Once I was at peace with this, my mentality began to improve. I felt at peace.
So what did it take to be successful?
1 seeking opportunities and saying yes to whatever is available.
2 accepting my reality to receive internal peace and happiness even if nothing changed.
3 finding grit as nothing is achieved without it.
4 trusting the right support would come at the right time and trusting the process to get there.
Firstly, I’d like to point out that there is certainly room for improvement to the NDIS. Everybody’s circumstances are different, always evolving and so plans cannot be simply formulaic. As a result there’s a lot of negative talk around the NDIS. However, I believe that we need to defend the NDIS. My blog post talks about the way in which I personally benefit from the NDIS.
In 2003 I became an amputee with one of my legs removed with an amputation known as a Hip disarticulation. As a result my life changed. I lost my job and I was unable to carry out household tasks such as vacuuming, mopping, cleaning, changing, washing bedding etc – the tasks that pre-amputation were carried out easily and without thinking.
As I am single and live alone, with family scattered all over the country, the only help I could access was a 1.5 hour visit from my local council home help crew to help with these tasks. There was no help for social activities, shopping and other tasks that I needed. Without the help of my parents for other tasks and getting me to some of my medical appointments life was difficult. I purchased a mobility scooter with my own money to help me get around in the community, to visit my local Men’s Shed and go shopping etc.
In 2018, with the help of my GP, I received my first NDIS plan. It was a very basic plan with 12 months funding for domestic help in the home once a week, once a fortnight visits to do lawn mowing and some gardening and 1.5 hours a week for a support worker for social activities. Some funding was also provided for occupational therapy and physio. Also included was funding for a new Manual Wheelchair and a ramp into my backyard, which enabled me to go outside in my wheelchair independently to enjoy a coffee etc in my backyard (which can be hard to carry using crutches).
The initial 12 month plan also allowed me to purchase a new lightweight, foldable manual wheelchair complete with tiedown points. This was a great help as my previous wheelchair did not have these, creating problems with one country Victoria coach refusing to carry me without these fitted on my wheelchair. On such occasions, I had to struggle out of my chair, up the bus steps and into a seat.
My next plan included a very good report from my OT, which included funding for my ramp into my backyard. This incredible home modification was completed in between one of the many COVID Melbourne lockdowns. Additional funding was also granted for a support worker to help me with some of my social activities, shopping etc – also providing me with welcome company between my planned Men’s shed outings and other activities.
I also received funding for increased occupational therapist hours that included preparation for a quote for a power assist device for my wheelchair. This was approved after a plan review and now I am a proud owner of a smooth one-power assist attachment for my manual wheelchair. This makes it much easier for me to use the chair when navigating steep hills or when fatigue sets in.
The NDIS has also opened up my options socially and I now have help to play in a Tenpin Bowling league once a week. I am also now able to enjoy trips to the park and beach (boardwalks only) with the help of a support worker, my new manual wheelchair and power assist.
I also have some funding for One-on-one gym sessions to help maintain my fitness levels, with an occasional day in a group activity where I can enjoy fun activities like fishing and visiting zoos and other places of interest. Please watch out for up-and-coming videos of my Assisted Technology and home modifications.
I would like to close by saying, that without the NDIS I would not be living the full and happy life that I am today.
Written by Paul Williamson – PDA ACT Associate Director
After eighteen months of avoiding COVID-19: joining the work from home revolution, avoiding contact with others, limiting outings, strict hand-washing and mask-wearing routines, my luck ran out in January, and I tested positive. I decided to travel interstate to visit family who I had not seen since the beginning of the Covid outbreak and, despite being extremely careful, it was not careful enough.
My symptoms were mild, much like a nasty winter cold, and I only learnt it was COVID when trying out one of the incredibly elusive rapid antigen tests (RAT) that I managed to get while my local pharmacy was re-stocking. I take several medications, including one that supresses my immune system and increases the risk of infections – including COVID-19.
My recovery took much longer than the 3-5 days advised by my doctor but, eventually, I tested negative after around 4 weeks.
Wait, what the…
I never fully got back to my baseline of good health, which had consequences when I again tested positive for COVID-19 at the beginning of March. I was triple vaccinated by this point, had already had COVID once and falling ill again was one of the last things I expected. I figured that vaccination plus having the antibodies of a recent infection would protect me for at least a few months.
Symptoms this time were severe, including breathlessness, debilitating fatigue, extreme difficulty concentrating, a total loss of my sense of taste and smell, and less frequently reported symptoms, including painful teeth and gums and insomnia.
While testing negative a few days ago, I’m still unwell and suffering quite bad fatigue and a general feeling of malaise.
It does happen
While anecdotal evidence suggests an increase in the number of people re-infected, there is no publicly available data in Australia at a national level to confirm this (as of March 2022). Research from the UK cited by Professor Mike Toole from the Burnett Institute supports anecdotal evidence. That research found that whilst in November 2021, only one per cent of new cases were reinfections; with the emergence of the Omicron variant, this figure had climbed to 14 percent by March 2022.
My concern (apart from a COVID-19 hat trick) is that some of the symptoms will persist, so called long COVID – a condition now recognised by the World Health Organisation (WHO). I’ve burned a lot of my reserves this year, and keeping up at work while parenting a teenage child and managing my health and other commitments – all while suffering ongoing fatigue and ‘brain fog’, is daunting.
I saw a great meme the other day about vaccination, something like: ‘you can put your faith in modern medical science, or risk dying like a medieval peasant’, which sums it up quite nicely, in my opinion. Going through COVID-19 unvaccinated, based on my experience, is not something I would like to have done.
‘We’re all in this together.’
During the Coronavirus pandemic, I have found the support available for people with disability variable. Despite the (often ad nauseam) pronouncements that “we’re all in this together”, that isn’t always how it felt.
Despite being supposedly at the head of the queue for vaccination, this isn’t how it played out for many people with disabilities who had to wait much longer. They were crowded out by others at vaccination centres or could not receive the vaccination due to living arrangements or mobility. Then we had difficulty getting (and the cost) of RATs, the requirement to queue for hours for PCR tests, the scarcity of support workers, the anxiety about introducing COVID-19 into the home, not to mention the added complexity of simple things like getting groceries and medication.
While I managed to get by, having resources including calling on family and friends, I know others who had a much tougher time. Those on fixed incomes, not as adept at dealing with the bureaucracy, without family and friends to call on, were often left feeling like a cast member in the Hunger Games.
People with disability so often feel the brunt of failures in planning, policy development and program delivery during national disasters or other upheavals. The Disability Royal Commission (DRC) expressed concern about the issue as far back as March 2020, reinforcing its concerns in February 2022 with the outbreak of the Omicron variant. The impact of COVID on people with disability will undoubtedly provide fertile content for the final report of the DRC, due in September 2023.
People with disability are resilient and resourceful; they have learnt (often the hard way) they have to be. It would be nice, especially amid a global pandemic, if their very survival didn’t depend on it.
Written by Krystal Matthews – PDA SA Associate Director
Some women have a burning desire to have children. Other women decide not to have children. There is also a large group of women who never knew how much they wanted children until they discovered fertility issues.
I belong to a group not talked about in society often, if at all. I am a disabled women who grew up with a burning maternal instinct to be a mother. I am also a woman who is considered less capable of being a mother by society even before those 2 pink lines show up on a pregnancy test – simply because of my disability.
Most couples speak to their GP about starting a family. I knew this was a conversation best avoided for me; medical professionals have never filled me with optimism. My Child Studies teacher told me that she didn’t want me to participate in the assessment of having a computerised baby. According to her, it would be too difficult for me and she didn’t want me to drop and break this expensive baby doll. It was then, at 15 years old, that I was already classed as a ‘bad mother’ – before I was even given an opportunity to become one. It didn’t make sense to me. Was it because of my Cerebral Palsy? Or because of my physical limitations and wheelchair? Despite my lifelong dedication to fitting into this mainstream world, I was still being rejected by it and my one pivotal dream seemed like it was frowned upon by society.
This didn’t stop me from viewing myself as a mum in the future. It just made me understand that being a mum in a wheelchair would be harder; mostly because of how non-disabled people view disabled people and because I would need to convince the world that I could be a good mum whilst at the same time trying to convince myself.
I met my partner in 2012 and the paradigm shifted. He had a beautiful 4 year old daughter who taught me that children only want your love, attention and fun. None of these three needs were impacted by my wheelchair and, as I fell in love with my partner, my love for her blossomed equally. She didn’t see my disability like adults do and she adored that I liked to play like a child. So much of my childhood was consumed with physiotherapy activities disguised as play and this has made me actively seek out childlike fun as an adult. The step-parent role was my crash course into parenting and it filled me with confidence and a stronger desire to have my own child, alongside my step-daughter.
Pregnancy was my biggest mainstream role to date; I felt like a ‘real’ woman for the first time. I went to the hospital for mainstream appointments, and I could happily complain about all the mainstream side effects that pregnant women talk about such as nausea and tiredness. I’m not going to lie, being pregnant and in a wheelchair was rough to say the least. People thought I was in a wheelchair because I was pregnant, not a woman in a wheelchair who was pregnant. I was also asked a lot about how our baby was conceived, as if the idea of a woman with a disability having sex was considered outside the realm of possibility. I can’t imagine an able-bodied woman getting asked this question when she tells people she is pregnant.
I gave birth to my baby girl, Zara on the 14th of May 2019 by c-section. It was the first operation I had, and from it I received the most beautiful gift. Giving birth to child who is able-bodied was like giving birth to a child who has superpowers.
When Zara was 9 months old, she looked up at me with her arms open and her big blue eyes begging me to pick her up, which I couldn’t do standing up. Nothing prepared me for that moment. The guilt a mother can feel is astronomical, especially when your baby’s needs are your number one focus.
Every new mother has guilt and anxieties, and I worked through them like I did with every challenge in my life until then. Zara and I are the perfect partnership. She knows I need to sit down before I pick her up. She knows I need my wheelchair before we leave the house. She knows that she can put on her shoes faster than I can put on my shoes. Zara gets excited when she sees another person in a wheelchair as it assimilates her mainstream world. My 13-year-old bonus daughter sees the world a little differently now. I hope she sees the uniqueness in difference and that fitting in all the time is overrated.
My definition of being a good mum is not wrapped up in trying to fit into the mainstream world. Now, as an adult and a mother, I look back at myself as a child and I need to honour the little girl in the pink wheelchair; I kept moving, I kept trying and I didn’t listen to the adults who underestimated me. That little girl will teach my girls something special; that little girl made sure that the only person who was going to shape her world was me.
Tips for women with a physical disability thinking about having children.
• Listen to your own voice, consider what you need, what your individual situation is and seek out a medical team that is supportive.
• Focus on building up your strength and fitness to support your pregnancy
• Work with an Occupational Therapist and a Physio Therapist before, during and after pregnancy to support you.
• Be your own best friend. Shape your own world and know that you are made for your child and your child is made for you.
• Read other stories of disabled parents. We are out there. Read “We’ve Got This” by Eliza Hull.
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