As someone living with
Primary Progressive MS and Bronchiectasis, (lung disease), I am someone who
could very well be classified as High Risk were I to contract this infection.
This fact has caused me to consider what that could really mean for me over the
course of the weeks and months to come.
I could die. That is
the harsh reality, my reality. That thought alone could be enough to induce
fear and paralyzing anxiety in me. I have read media reports that if it came
down to a choice between my life and that of an able bodied person in ICU, I
may draw the short straw and lose the lottery of life which is a terrifying
Knowing this, I have
chosen to regulate my emotions and remain calm and rational and to employ logic
not fear. I have chosen to plan and prepare as best I can for any eventuality
that may arise. I have also chosen to only control the things I can and to let
the rest go.
As the saying goes,
“Stay Calm and Carry On!!
I am indeed fortunate
in many ways. I have secure employment in a job I love and I am able to now
work from home. I have a secure home and a good support system. I have no personal/household debt which is very
comforting in these challenging times.
The NDIS has allowed me
to have the supports I need to live an ordinary life and I wouldn’t be who I am
without that framework around me. It has given me the ability to work, study,
access the community and travel. My life has opened up in so many amazing ways
so when the pandemic hit, I made a conscious decision not to reduce supports
but to modify the delivery of the supports in a way that would still support my
mental and physical health.
I am now only leaving
the house to exercise and for essential medical appointments really. I choose
to minimise my risk of infection in this way and to be honest, I am really
enjoying the quieter pace of life. I am reading books, taking my dogs on
leisurely walks and napping every day. I have no hurry to rejoin the rat race
of life and I am actively questioning if that is even necessary at all.
Is this a fundamental
shift in the way we live or a temporary pause before we once again are infected
with the disease of busyness?
Throughout our lives we all experience highs and lows. We can feel trapped in our minds, bodies and spaces. Sometimes we choose an alternate reality to escape from what is happening in the world around us. Having personally experienced this, let me share a part of my journey.
I was born with a progressive and degenerative disability that impacted on my life in multiple ways. Initially, I was able to walk and physically capable of many things, as puberty hit my body changed so drastically; I ended up in a wheelchair. Learning to live with the complexities caused by the physical side of my disability became a new challenge.
This was a major life changing moment for me. For example, 12 years ago I could figure skate. Two years later, my body deteriorated to a level where I became bedbound, unable to transfer or care for myself independently.
I couldn’t understand WHY this was happening to me. Why, I had such intense pain. I was confused. I quickly went from a happy teen who would smile and talk to people into someone who felt trapped. Not only within my body, but isolated within the four walls of my room.
My confidence had decreased. I didn’t know who to turn to. Feeling like my whole world had crumbled around me, I started developing depression and I needed to find a way to distract myself quickly.
So, I got a computer and started living in virtual worlds, by joining alternate universes. I would game with them from across the globe on mass multi-player online games, instead of physically being around people. This online existence meant I could do anything, and it opened doors within my mind. It started to simulate the feelings of walking, dancing, and even figure-skating again. I had no restrictions and it was amazing! I could travel anywhere and in any time. I was losing my sense of reality.
For 7 years, I lived in these new worlds thinking I was happy, only really emerging when it was necessary. Over a period of time I started to realise that this was not healthy. I had to come to terms with the way my body had changed. Needing to grow mentally, this altered my perspective and reshaped my attitude around disability. My first steps were to accept myself and the freedom I could gain from my wheelchair. To achieve this, I had to leave my virtual life behind, by coming out of the shadows I opened my arms and embraced everything, rediscovering the amazing world that I was so afraid of.
Over the past 3 years, as I have built up my confidence, I have also been learning how to be a disability advocate supporting diversity and inclusion. Developing communication skills around public speaking and networking, I have strengthened my connections and now I’m building my businesses.
Through my networks, I was introduced to a representative of Physical Disabilities Australia (PDA). Joining PDA, gave me opportunities to meet with other members, where I learnt about their stories.
With PDA, I’ve realized I’m not alone. Discovering I could still do so many things, like race, dance, shop, socialize, work and travel. I was preventing myself from having an incredible life. Now with the roll-out of the NDIS, I aim to expand this and live to the fullest.
Every person has their own unique story and although we go through different journeys, we have something in common.
If you want to read more blogs like this one or find out what PDA does, please check out this website, follow them on Facebook, Instagram, LinkedIn and Twitter.
Start to connect, as you will never know what you will find.
the National Disability Insurance Scheme takes account of our care and support
requirements, in my view the policy doesn’t go far enough to tackle the
marginalisation and discrimination that people with disabilities face.
cases like *Quaden Bayles has taught us nothing, Australia has a problem with
our attitudes and perceptions of people with disabilities. In my life, I walk
with an unusual and stare provoking gait. I have a speech impairment. Despite
that I run my own business and sit on a board but the general public don’t see
that side of me.
share this not for your pity or condolences but for context. Like you I’ve
faced adversity in my life. For me I can’t hide my disability, instead I
celebrate my distinctive abilities. It is not the fact that I can’t run that is
my disability but the taxi driver that refuses my fare because I am
has been calls to integrate disability awareness into the school curriculum but
we need to go much further because I don’t want to be trapped in a dichotomy
between a welfare recipient and Paralympic champion, I want the tools to live
an ordinary life without the social judgement of people who has no idea about
me, a ramp is a small part of what it means to be an accessible society. An
accessible society would be one where I could say “This is me, disability is my
identity”, it would be a society where children would be educated to ask first,
this we need a shift in policy, we need to treat disability discrimination as
something to be prevented by education not having to be referred to a complaint
authority. Disability awareness in my view should be a component of study in
high school PDHPE courses. Making disabilities part of normal life should be
instilled from people from a young age.
top of this we need campaigns focusing on everyday people with disabilities not
just those with a public profile or cute kids who can illicit the most
donations, a campaign not of inspiration porn but people that we can aspire to.
We need more people like Nas Campanella being the public face which makes
A good attitude may not erase a disability but it can make disability more included in our society.
On this International Wheelchair Day, it
provides us all an opportunity to celebrate the positive impact wheelchairs
have on our lives. A day not only for wheelchair users but also a day to
recognise the millions who either provide accessibility to wheelchairs and for
those who support and or care for wheelchair users themselves.
Did you know that only between 5-15% of
people whose mobility depends on the use of wheelchairs has access to a
suitable wheelchair? Not every wheelchair is the same and those with mobility
limitations all have different reasons for their requirements. I never really
gathered the impact of what that means until my new custom fit wheelchair was
I have been diagnosed with Multiple
Sclerosis for over 20 years now, the progression of this disease has become
more apparent over the last 10 years with my mobility the biggest affected.
Once, I could mobilise with a walking stick and crutches and now, whenever I
venture out of the house I use my wheelchair. As my mobility worsened my
required specifications for my wheelchair increased. From using an old
stationary transfer wheel chair, to independently moving around in a manual
wheelchair to now having a custom wheelchair to fit me with a smart drive
attached for ease has been an incredible improvement to my life. It has
provided so many opportunities I previously would not have had.
Previously I would have been limited or
even excluded all together from activities either due to restricted or no
accessibility at all. Being able to use my wheelchair and the opportunity
to use other specialised wheelchairs has provided me many opportunities that
previously were not available. It has influenced my independence, choice, a
sense of community and an increase in my self-confidence. These opportunities
and choices have allowed me to undertake and enjoy tasks that previously I
would have NEVER have done or seen. Provided an opportunity to do some amazing
and life changing things.
These are photos of some amazing things that I have been able to do due to the access to suitable and specialised wheelchairs. From swimming in the ocean on a beach wheelchair, to getting up close and personal in Uluru with an off road wheelchair to volunteering at the Invictus games. None of these things unique experiences would be possible without a wheelchair, the people who support me in a wheelchair or the accessibility implemented for wheelchairs.
I Work for an organization called Limbs 4 Life as a Project Coordinator. One afternoon I was driving home from a meeting about 15 kms from my house. Most of that journey there are roadworks being done. It is normally an 80 km/h speed limit, but because of the roadworks, it was down to 40 km/h.
As I was cruising along at 40km/h, I happened to glance over and noticed new looking white Toyota Prado with a roof basket and side awning, you know, your usual 4wd set up, parked on the side of the road with another car in front. Not unusual you may say, and you would be correct, BUT, as I got closer, I noticed that said Prado, had some other, hidden additions. It had blue and red lights flashing in the front grille and also in the rear windows. It was an unmarked WA Police car. Now my perception of the vehicle had totally changed.
What you perceive is very much guided by how you think and can be defined by your recognition and interpretation of a sensory input. For an example, if at a set of traffic lights, you have a green light, you perceive, through your sense of sight, that it is ok for you to proceed.
What does it mean for those of us with physical disabilities? We may need to have additions made to the “normal” for us to be able to process that sensory input. Things like flashing lights, sounds, alarms etc. will assist hard of hearing and vision impaired people. For people with mobility issues, obvious things such as ramps and rails assist when we are navigating the community.
BUT………perception goes both ways. What able body people perceive good for us, doesn’t necessarily equate to what works for us. We, as a community of physically disabled people, need to be in the forefront of planners and designers’ thoughts and minds when they are building anything in the community. You can do this by getting involved in your Local Government Area Disability Action and Inclusion Group. You can have input through State and Federal Government Planning Groups, such as those that are put together when they build new sports stadiums, shopping centers and recreational facilities.
The more you go out in your community and exercise your right of place to that community, people’s perceptions will change, and they will see you as valued and important.
Lastly, don’t let other people’s perception of you, or our community, be the thing that stifles you. You are unique, and you bring to the table a wealth of perception and experience that only you can have.
written by PDA’s Ambassador, Dr Dinesh Palipana OAM
As a doctor with a spinal cord injury, I’ve had the opportunity to gain a unique insight into healthcare delivery for people with disabilities. Physical access is often an issue, even in big hospitals.1 Flexibility is necessary, considering the unpredictable impact on time because of a different lifestyle. However, my most striking experiences have been in the diagnosis of sometimes life-threatening conditions.
With a spinal cord injury for example, patients mightn’t give a classical story for common conditions because of differences in sensation.2 For the same reason, physical examinations may not turn up anything useful for the doctor.3
I once woke up with chest pain, breathlessness, sweating and palpitations. It didn’t get better. Over time, this was reviewed by a few different doctors but was eventually put down to anxiety. I became frustrated and listened with my own stethoscope. I could hear some sounds in the lungs suggestive of a few different problems, but no one heard me out. Eventually, I started losing consciousness every day. Then, someone took notice. We eventually found a significant amount of fluid around one lung. The issue took weeks to identify. I ended up in an intensive care unit.
Another time, I was a patient in an overseas emergency department that wasn’t aware of autonomic dysreflexia – a potentially fatal complication of a spinal cord injury. I knew what was happening then, but no one listened. I thought that the end was near that day. Fortunately, we knew a doctor who turned up and handled the situation in the eleventh hour. In contrast, I’ve been under the care of an open-minded local emergency department who listened and identified the problem quickly.
This state of affairs is no one’s fault. In medical school, doctors are required to learn about a thousand and one different things. While specialty training as a doctor, the focus becomes even more narrow. There is just no time to cover the long-term intricacies of conditions like a spinal cord injury.
General practitioners are the frontline in Australian health care. They are the first that can see the hint of a problem. A proactive approach prevents problems at the gates, but this requires an understanding of what to look for in this unique population. Even in the early 1900s, people with spinal cord injuries for example lived very short lives because of complications. It was often a death sentence. In some parts of the world, this is still the case. But, we have the resources to ensure that our population can live a healthy and productive life comparable to those without similar injuries. Today, medicine can do that.
I must note too that we often see people in the hospital with questionable treatment given to them by their daily caregivers. Caregivers are an invaluable part of society but as with everything, some reckless ones still pervade what is perhaps one of the most precious relationships. More than once, I have seen needless injuries and negligent care. I even had a personal interaction with a caregiver who laughed about dropping their helpless client.
I’m fortunate to be in a position to have some understanding of the life experience in someone with a disability who presents for healthcare. I remember one night when a patient said, “I’m so glad that you came into this room as my doctor, because I knew that you’d understand”. I’ve also been lucky enough to have the background to adequately direct my own health care. I wonder though, what about the thousands that are voiceless?
It’s never productive to just talk about problems. What are the solutions? I can think of two immediate things.
One, is education. I’ve been involved with developing education initiatives on spinal cord injury for general practitioners. The goal is to have some upskilled general practitioners in this area that people can access for care. It’s that simple. Upskilling general practitioners to have a special interest in various disabilities is important. Thoughtful care in the community can reduce hospitalisation and resource use; and save lives.4 However, it will be up to us – the community – to drive these initiatives. No one else has a vested interest to do so.
Two, is having more people with disabilities in the health professions. I faced more than one challenge in becoming a doctor with a spinal cord injury. I once talked to a student in a wheelchair who wanted to study speech pathology, but was told that they couldn’t. These stories are not isolated. The health professions have ironically been resistant to include the very people that they treat. We are now starting to make headway in medicine. Other professions must come into line too. What better way to change healthcare for better than to include lived experiences?
Australia is leading the way in social changes for an inclusive society. We have an opportunity to create an inclusive healthcare system as well.5 We’ve seen the horrors of areas like aged care exposed in Royal Commissions. We don’t need to wait for the same in disability and healthcare. With a grassroots effort from us all, we can make it happen.
1. Guilcher S, Munce S, Couris C, Fung K, Craven B, Verrier M et al. Health care utilization in non-traumatic and traumatic spinal cord injury: a population-based study. Spinal Cord. 2009;48(1):45-50.
2. Strauther G, Longo W, Virgo K, Johnson F. Appendicitis in patients with previous spinal cord injury. The American Journal of Surgery. 1999;178(5):403-405.
3. Ingram R, Suman R, Freeman P. Lower limb fractures in the chronic spinal cord injured patient. Spinal Cord. 1989;27(2):133-139.
4. Guilcher S, Craven B, Calzavara A, McColl M, Jaglal S. Is the emergency department an appropriate substitute for primary care for persons with traumatic spinal cord injury?. Spinal Cord. 2012;51(3):202-208.
5. Donnelly C, McColl M, Charlifue S, Glass C, O’Brien P, Savic G et al. Utilization, access and satisfaction with primary care among people with spinal cord injuries: a comparison of three countries. Spinal Cord. 2006;45(1):25-36.