Australia commemorated International Day of People with Disability (IDPwD) on Saturday, December 3rd. IDPwD, established by the United Nations in 1992 and observed in Australia since 1996, serves several key objectives: fostering a deeper understanding of the challenges faced by People with Disabilities (PwD), rallying support for upholding the rights, dignity, and overall welfare of PwD, and advocating for the full integration and inclusion of PwD in all facets of society. 2018 Australian Bureau of Statistics data found that 17.7% of the Australian population, 4.4 million Australians, were PwD.
IDPwD events in Australia were organised by various government bodies, workplaces, schools, and universities nationwide. These events all shared a common theme: educating the public by giving PwD a platform to share their personal stories. Through these narratives, these events aim to break down preconceived notions of difference and instead emphasise the commonalities and shared experiences that connect us all. This approach humanises PwD in the eyes of those without disabilities, fostering greater understanding and empathy for the daily challenges faced by people with disabilities. In essence, these events help the non-disabled population “step into the shoes” of PwD, gaining a deeper comprehension of their lives and experiences.
What is disability? In Australian society, we acknowledge that disabilities can be both visible and invisible forms, encompassing physical, intellectual, psychiatric, sensory, and neurological disabilities. In this context, the concept of disability oversimplifies a complex reality, based on how an individual’s physical or mental condition deviates from what is considered ‘the norm’. This perspective is often referred to as the Medical Model of Disability and is relevant when seeking treatment or therapy from healthcare professionals. However, it falls short in recognising that true barriers to the full and equal participation of PwD in society stem from environmental and attitudinal factors within our community and society.
The Social Model of Disability (SMD), originating in the UK in the 1970s, marked a groundbreaking paradigm shift in disability theory. At the core of the SMD lies the distinction between an individual’s inherent conditions or attributes and the broader societal context. According to the SMD, “impairment” pertains to the medical or biological deviations from what is considered the norm. For example, a person who uses a wheelchair may have a physical impairment resulting from a spinal injury. On the other hand, “disability” is defined as the interplay between an individual’s impairments and the obstacles presented by the physical environment and the prevailing attitudes in the social environment. Disability emerges when, for instance, a person using a wheelchair faces architectural barriers in the physical environment. The SMD played a pivotal role in helping PwD recognise that many challenges they encounter are not rooted in their disabilities but are the consequences of disabling elements within society.
The Biopsychosocial Model of Disability (BMD), which emerged in the late 1970s, was designed to offer a comprehensive understanding of how medical conditions and the disabling effects on individuals are not solely a result of biological factors, but rather a complex interplay of biological, psychological, and social factors. Amid various disability models, the BMD stands out as a relatively straightforward and all-encompassing framework. It takes into account the experiences of PwD, the societal obstacles they confront (both environmental and attitudinal), and the psychological impact of individuals’ internal relationship with disability, along with the challenges of overcoming social barriers. In essence, the “Bio” component of the BMD deals with the physiological aspects, such as the effects of impairment, like pain; the “Psycho” aspect addresses psychological aspects, including internalised oppression; and the “Social” aspect encompasses factors within the social environment, including elements like architectural barriers, such as stairs.
Internalised oppression represents a psychological and emotional dimension of disablism, arising from the way PwD perceive themselves. Given that society often ingrains a negative perception of disability, PwD may internalise these negative views, leading them to self-oppress when they perceive their disabilities as a negative aspect of who they are. This phenomenon is more likely to affect those who acquire disabilities later in life because they are confronted with pre-existing negative portrayals, preconceived notions, and stereotypes about disability that they held prior to acquiring disability.
When contemplating the inclusion of PwD, it’s crucial to assess our current progress toward creating a more equitable world. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was ratified in 2008, marking a significant milestone as disability considerations were notably absent from previous international human rights agreements. In comparison, the UN Convention on the Elimination of All Forms of Discrimination against Women was established in 1979, and more than four decades later, gender equity remains an ongoing challenge. Now, 14 years since the UNCRPD’s implementation, numerous advancements are still pending, waiting to be put into practice to enhance the lives, circumstances, and the overall inclusion of PwD, while also enriching the knowledge base within disability studies.
Most community members will have limited control or influence over the physical environment in their workplaces or places of study. We are not all architects or builders who can fix inaccessible steps. However, it’s important not to be disheartened by this limitation. As mentioned earlier, it’s the social dynamics that People with Disabilities (PwD) encounter, such as prevailing attitudes and misconceptions, that shape the extent of their exclusion or inclusion in society. Becoming more disability-aware and fostering understanding doesn’t require a comprehensive knowledge of every medical condition or disability type. Instead, it’s about cultivating an awareness of the physical and social environment, which enables you to identify and acknowledge the barriers that exist.
My top tips that individuals can implement for enhancing the inclusion of PwD: 1) Acknowledge that PwD are first and foremost individuals with emotions, aspirations, and life experiences. They are not objects of pity or charity, but rather individuals navigating real-life challenges and triumphs on a daily basis. 2) Recognise that PwD are the foremost authorities on their own lives. If you have questions, approach them with respect and inquire politely. Every person’s experience of disability is unique, and it’s essential not to make assumptions or speak on behalf of others. 3) Appreciate the value of the lived experiences of PwD. The diverse perspectives, values, and life experiences they bring to the table are constructive contributions to teams and the decision-making process.
IDPwD serves as a poignant reminder that the entire society reaps the rewards of embracing diversity. Consider the research and development (R&D) investments made in assistive technology, particularly predictive typing software for People with Disabilities, back in the early 1990s. These initial efforts paved the way for predictive text features on the brick phones of the 1990s through the 2010s. Subsequently, this technology evolved into voice-typing and voice-activated digital platforms, such as Siri and Alexa, which have now become ubiquitous. Today’s R&D efforts, centered around addressing challenges faced by People with Disabilities, will similarly contribute to the development of future consumer products, accessible to the wider public in around three decades. This underscores that progress in making the world more inclusive doesn’t solely benefit PwD; it’s a boon for society at large.
Tim Harte GAICD is the Victorian State Director for Physical Disability Australia, Chair of the Surf Coast Shire Council disability advisory committee, and a Chemistry Honours student at Deakin Universities Institute for Frontier Materials.
Photo Caption: Surf Coast Shire Council (SCSC) staff with members of the Councils’ All Abilities Advisory Committee (AAAC). Left-Right: Thomas Byrnes (AAAC Member), Tim Harte (AAAC Chair), Larry the therapy dog, Damian O’Brien (SCSC Youth Development Officer), Jennine Templar (SCSC staff), Sherridan Bourne (former SCSC Aged, Youth and Access coordinator), Cr Mike Bodsworth, Richard Porter (AAAC Member) & Abby Ellery (SCSC Aged, Youth and Access coordinator).
I am feeling my age. I am 59 years and for 59 years I have been disabled.
I have seen attitudes change when it comes to people with disability. Mostly for the better, but there is no opportunity to rest. The teaching and learning must continue. Each new generation that comes along must be handed down the history and learnings from the previous. It is hard to move forward and very easy to slip backwards. Rights are earned and must be continually justified and that’s hard.
Our work as people with disability is never done. We can never stop advocating and reaching for equality.
We can never forget that only 30 years ago people with disabilities were locked in institutions. Were locked away from society and treated with either fear by the general public or infantilised by those who cared for them. Their rights stripped from them. Many fighting to be released back into the community that they so rightly belong in. Some still fighting now to be released from nursing homes where younger people languish under horrendous guardianship laws.
The language around our community 30 years ago was insulting, humiliating and used to put us down. I cannot to this day say that those word have been removed from our vocabulary, but I can say that there is growing awareness that they are not appropriate and must not be used to weaponise and hurt us. One wonders at the motivation of those who use the words in these ways. Is it based on a lack of education or empathy?
The unemployment (or underemployment) rate of people with disabilities has not improved in 30 years. We are still undervalued as workers. There is still a lot of celebrating of employers who, as part of their PR building exercises, employ people with disabilities in a bid to appear more evolved and equitable. It’s a shame because business and Government agencies are missing out on our expertise in terms of our qualifications and skill sets and also our understanding in our field of disability. We know disability from our own perspectives and this should be valued and our knowledge and experiences utilised.
Why is it that so many agencies, businesses and our own Government departments have made an industry out of disability and yet we are not at the forefront of these endeavours? We are not in middle management. We are in management, and we certainly don’t run the organisations in many cases. This amplifies the hollowness of the words in our battle cries for equality, “nothing about us without us”.
In February 2020, $32.7 million was awarded to 28 grants across Australia to provide three years of funding for activities that will provide people with disability pathways to meaningful employment and yet statistically we are still not moving forwards.
With funding for ILC (information, linkages and capacity building) grants in the millions of dollars awarded to not-for-profit organisations, it is not disabled people who are running these organisations they are just the justification for the work. Once again, I see the theme that we need to be helped, handfed and paternalised rather than lead. One organisation has a lead program, but the real tangible outcomes from this are minimal. No real improvement of the live of disabled people just a lot of busy work.
Yes, we are often on the boards of these organisation in a nicely curated ratio. We are employed as “lived experience” consultants for co-design projects, yet we don’t drive the engine – we are merely the trailer attached to the bus that drives the industry.
This day though does come with some pride when I see the achievements of our community, our real community, people with disabilities just out there doing their thing. It gives me such hope when I go out and see disabled people like me out there too. Technology has meant we are OUT now, in our wheelchairs and on our scooters. Using our mobile devices to communicate, using our support workers to do the heavy lifting so that we can be seen and so that we can challenge inclusion.
The NDIS has been revolutionary in the lives of disabled people and for this we must be proud of our nation and a government which has seen the value in equity.
In my role as PDA’s Tasmanian Director, I am part of a national wide disability organisation that exists with just three paid part-time staff members and a board of actual disabled people. Our work output is phenomenal in comparison to other much larger organisations. We run webinars that are presented by volunteer board member and feature topics that are real to our community. We have a monthly online social gathering to actually build community and respond to people and issues that affect us and also provides some fun and a chance to socialise together. This is what a small, dedicated community in an organisation can do. Perhaps there needs to be a look at what ‘work’ the others do. I seriously have issue about reporting to the Department of Social Services and these needs tightening up. I know my small organisation does the work and goes over and above.
This year our day of celebration, reflection and recognition fell on a Sunday which meant that it was fairly quiet across the nation. My own local group is meeting for a picnic and yarn this week at a local park. The day we are meeting falls on Human Rights Day which is quite poignant, because we must never forget that disability rights and human rights are the binding principals that have seen us achieve so much this far.
We are all familiar with the journey of learning to thrive through disability. This path normally involves years of searching for answers with many setbacks in finding the best management plan and supports. Then, dealing with organisations like NDIA brings challenges that can push us past our limits. It is after years of this I found my mental health at a low.
Since my exercise physiologist is working well with me, I decided to enter a powerlifting competition. It would give me a healthy goal that involves other people in the form of other competitors and those that work with us. Turned out to be the best decision.
Benefit 1 – Starting bench press improved my body in an unexpected way!
As someone with hEDS my connective tissue is too stretchy and cannot support my body and organs the way they are designed to. As a result, my muscles need to be extra strong to support my joints instead. It’s also hard to stretch because I hyper-extend and get no benefits, even though my body is screaming out for it. My body desires to move and get strong but more often than not I get injured doing simple things.
Lying down on the bench press provides a decent stretch without injury throughout my whole body. Winning already!
Benefit 2 – Mental Health
My mental health improved immediately as expected. Physically feeling better and stronger coupled with a goal to work towards really did the trick.
Benefit 3 – Meeting people who are happy to work with me – no matter what that means!
Powerlifting Australia informed me that the next competition was fast approaching, and they were happy to make adjustments to make it happen last minute. Not only that, but there is no segregation. Adjustments are made so everyone can compete together regardless of their physical ability. Which I really appreciated. This alone was uplifting and empowering.
Competition day.
The first thing I noticed was the family vibe. Feeling that, I knew everything would be fine. Despite arriving an hour late to prevent health issues – I struggled – but they flew into action. I was informed of anything I didn’t know, such as doing weigh in, choosing what weight I’d lift for my 3 attempts, then warming up.
It takes a lot of people to make a competition run. Everyone knew their job and functioned so well as a team you’d not know if there was a problem they had to solve. I ended up pressing my personal best – which was exciting – and leaving with a gold medal!
As a spectator you can’t help but cheer everyone on. I even witnessed a world record being made. I am definitely looking forward to the next competition and I’m thrilled to be counted with everyone else.
I am a white disabled woman living in Australia. My cohort is still the most marginalised and discriminated against minority group – people with disabilities suffer discrimination in Australia more than all the other minority groups put together. 44% of all complaints received by the Human Rights Commission are in regards to discrimination because of disability (AIWH, 2023).
I am a university student and as such come across a wide range of overseas students.
My taxi driver from Lebanon on Friday night said that they had been a nurse in their home country, and that things are very different here for people with disabilities and so I am very lucky. Our country is getting a little better.
My support worker from India is a trained physiotherapist – but only in India. I asked her what it is like for people with disabilities in her home country. She answered “Good if you come from a rich family who can pay for everything, but it is not like it is here.” When I asked how things would be if you are not from a rich family. She sort of frowned and answered “it’s not good. There are a lot of beggars in India who have disabilities. They beg for food – that is if they survive.” I asked “Do they die?” Her sad answer was “Yes”.
My Iranian friend at university has a cousin who uses a wheelchair. Her family is able to take care of her and her mother and family are very protective of her. She mentioned that access is very difficult in her country and the shops and streets make it very hard for her family to push her wheelchair. It is also a country where it is mandatory for women to wear a hijab. Very proudly my friend said her cousin asserts her dissidence by claiming she cannot wear it because of her disability. It seems that, at least to this point, she has been given some leniency.
My first holiday overseas was to Indonesia. I was 24 years old. Getting off the tour bus in a remote, small town square, I was rocked to my core. My naivety in my perceptions of what the lives of people with disabilities was like was rocked. I had assumed that everyone (wherever they were in the world), had a life like mine. I was so wrong. The bus was met by a small group of disabled people whose bone contractures (unlike mine) had not been surgically altered. They moved around on makeshift wooden skateboard type trolleys, sitting just a few centimetres off the ground. Prior to this, I had no idea what real poverty and deprivation looked like.
And so it is that I check my privilege. It is difficult to compare apples and oranges, a rich first world country and the countries outside of our “lucky country”. I complain about the NDIS (National Disability Insurance Scheme) not being perfect and not meeting all my needs and the needs of others in Australia, but then I remember what I have been told and what I have seen.
In 2013 the Labor Government legislated a trial rollout of the NDIS to give people with disabilities choice and control over their lives – much like those whose disabilities saw them eligible for MAIB insurance. People with disabilities not covered under MAIB due to their being born with their disabilities, were then afforded a level playing field with the NDIS.
The scheme has now grown to be Australian wide. There is obviously still work to be done to make the scheme sustainable and efficient, to stamp out corruption from nefarious, unscrupulous entities and to give people with disabilities dignity. However, we are well on the way to this being achieved. We must also be ever vigilant in ensuring that the conditions offered to people with disabilities in Australia are the best that our country can provide.
I acknowledge my privilege to live in Australia and be a participant of the NDIS, but I will never forget that many living in other countries do not have such fortunate lives. It is but by a quirk of nature that I was born here, and they were born there! The divide between us is unfair!
This is the first of my series of blogs on assisted technology that has been funded by the NDIS to enable me to enjoy my freedom, to get out and about and, most importantly, to achieve my goals.
For those who don’t know me, I am an above knee amputee with a type of amputation known as Hip disarticulation where part of the hip is also removed. I live in Melbourne, Victoria and am PDA’s Victorian Associate Director. I always been passionate about exploring the outdoors and nature and used to do a lot of hiking before my amputation.
Today I am going to tell you about my Adaptive Trike known as a Jee-Trike supplied by Living Concepts Australia and funded by the NDIS. It is built from imported parts and assembled at Melrose Wheelchairs in Oakleigh, Victoria. It has been fully customised to suit me and my needs. You can view their range of equipment at https://melrosewheelchairs.com.au/. With my Jee-Trike I can now get back to my bush exploring, but from a different point of view.
The Jee-Trike is known as an off-road, hand-powered cycle with an upright seating position and rear-wheel drive – which is a bonus as many other hand cycles are front-wheel drive which can be difficult to use with some forms of physical disabilities. It can be used by many people with different types of physical disabilities including those with quadriplegia. The Jee-Trike can be custom built to suit the user and can include options such as power assist to enable easier pedalling and brakes that can be operated by the elbow. Whilst the Jee-Trike is not suited to all physical disabilities, it can be adapted in several configurations.
There are many Hand Cycles available on the market. I chose the Jee-Trike as it was personally best suited and easy to modifiy for my needs. I have included a short video where I walk you through my custom-built option (please click on the link at the bottom of this blog to view). Special thanks to my support worker from Sonder Care Group for helping me film this video. Sonder Care Group is a support agency providing support workers to accompany you 1:1 (or other support ratios) and who make outdoor pursuits such as adventure camps, 4-wheel driving, mountain biking, snow and water activities and much more possible. With their help, choosing to attend events such as music festivals, cultural events and anything else that you might be interested in is in your control. Sonder Care Group will do their best to match you with the right support worker and the activities you like to do. Check them out at https://sondercaregroup.com.au/. It was with their help that I was able to visit and ride a section of the Great Southern Rail Trail in Gippsland Victoria – something I’d always wanted to do. We rode the section from Loch to Korumburra. I have included a slideshow of this ride at the end of this blog’s video. Most of the video was taken whilst on our most recent ride.
https://youtu.be/-z501xSH6g4
My support worker and I did the ride together and she had the right transport to carry the bikes.
Without the NDIS and assistance from my support worker, achieving these goals would not have been easy to achieve. I like to encourage people to get out there and explore your passions. With the right equipment, support and determination, your goals can be achieved. None of this would have been possible without the assisted technology and pushing myself. This may not be suited to everybody as each person’s needs are different. In a future blog, I will show you some of the other items that have made a huge difference to my life – including my everyday wheelchair. Watch this space.
I encourage you to subscribe to PDA’s YouTube channel whilst you’re checking out my video so that you don’t miss Part 2 of my blog and the many other exciting PDA videos in the pipeline.
The social model of disability
I have lived with what others call a disability all my life. I have Arthrogrophosis Multiplex congentia which is not very well known, with many doctors even needing to google it to understand what it is.
I use a wheelchair now, but for many years I walked around using a walking stick and long calipers (leg braces). However, the effort involved took its toll over time and I had to resign myself to the fact that I was now indeed a wheelchair user.
Things have changed dramatically for me. Whereas before I was able to open doors and even drag myself up a couple of steps, now I can’t because as we know wheelchairs can’t fly. Other things changed too. Where once I could go to a regular toilet (of which there are thousands, millions in the community), now I had to seek out accessible disability bathrooms (which are not as common). Even doing one of my favourite activities became a problem, op shopping! Do you know how many op shops are inaccessible? And don’t get me started about shops in general out there. Geesh! There is still a long way to go in the talks and provision of accessibility.
But even with challenges such as these, there are times where I can forget I have a disability. I am simply me and when things are going great, I forget. This is when the social model of disability is working perfectly. So what is the social model of disability you ask?
“The social model of disability seeks to redefine disability to refer to the restrictions caused by society when it does not give equitable social and structural support according to disabled peoples’ structural needs.“ (Pam Thompson et al 2012)
So basically, this explains why I forget I’m disabled at times. If I can smoothly traverse my day with no manmade obstacles to stop me, then I am not disabled. If I can get to a toilet, if I can go to the shops I want, if I can just go about my business like everyone else, then am I disabled?
It’s only when access is denied by obstruction that I become frustrated and rail at the unfairness of it, not just for me but for everyone like me.
Yesterday I got a takeaway coffee and googled the nearest fenced dog park. My doggies, my support worker and I were going for an adventure and some much needed outside time on this barmy (for Tasmania), sunny 17 degree day.
We arrived at a beautiful tree lined park with thick green grass and doggos everywhere bouncing around after balls and socialising with each other as their people socialised with the other humans. We parked the car between the trees to get close enough so that I didn’t have to traverse much of the rough gravely dirt to get to the gate, but then we saw the gate. There was a small step. Even though it was small, as I said before wheelchairs don’t fly. I could not enter. I was frustrated! I sat in the car and watched through the window as my doggos enjoyed the park. I could not join them. These are the times I feel disabled! These are the times when society has built infrastructure that excludes me.
Not being a shy flower, I instantly rang the council to point out this discrimination. The response I got was “gee that park’s been there for years, no one has said anything before this.”
I responded with well something needs to be done now.
The reason why no one has complained about the access issues in the past could be attributed to a number of reasons; the emotional labour it takes a person with disability to constantly ask for solutions to barriers takes its toll and there is only so much we as individuals can speak up about. Another reason, people with disabilities simply don’t know their rights – under anti discrimination legislation, access is not to be denied to PWD. It is your right to enter just like everyone else. The last reason could be a council issue. For all the access and inclusion committees put in place by councils these days, the work simply isn’t filtering down to the ground, like the actual bricks and mortar of the council area. Policy is one thing, but action is another.
The takeaway from this story is that we need to be striving to make sure access is not denied. The social model of disability is a reality, disability is a construct. That is, our environment makes us more disabled than others simply by the way things are built around us. I want to continue to live my life day to day forgetting I have a disability. For this to happen at the moment, a lot of people like me need to speak up about the issues and constraints in their communities, such as access to my local dog park. We should not be denied.
Tim Marks (PDA TAS Director) shares this video of his new leg being fitted.
It is a c leg computerised prosthetic leg with a flex foot. The socket is a varios socket which, at the time of recording, had only been out 8 months.
After 13 years as a wheelchair user, Tim is finally learning to walk again.
On Thursday 01 June I attended the Assistive Technology Suppliers Australia (ATSA) Independent Living Expo at the Perth Showgrounds.
I went to check out what is new and upcoming in the AT world. To be very honest, I have been to many of these in the past and so was not really expecting anything to take my breath away. Well, I was very wrong.
There were well over 100 suppliers. Everything from all types of wheelchairs and wheeled mobility devices to bedding, beds and lift chairs for the lounge to modified accessible vehicles, to the latest in devices for vision impaired people.
I want to highlight 3 products that really blew my mind.
#1. A remote-controlled wheelchair. I was wandering through the exhibits and this empty attendant wheelchair came towards me. It was surreal to see this, so I followed it to the stall to have a chat with the operator. She explained that it was designed for a user who needed to move the chair independently once they had transferred from the chair to a bed for example. It can be easily operated by a support worker or by the person with a disability.
#2. In the physical disability world, we know that on the whole wheelchairs haven’t really changed much in the past years. I came across Rove, an engineering company based in Melbourne, who are doing some game changing work in the build, and weight, of custom wheelchairs. They are building them with 3D printed Titanium, so they are super lightweight and extremely strong. As they are custom made, the final chair is completely custom fitted to the user and as they say, “millimetre perfect”. I was passed a very big frame and it weighed no more than my prosthetic leg. Incredible.
#3. Mobility scooters are great, except when you forget to charge the battery. Well, there is now a solution. A solar powered scooter. This scooter has 2 onboard batteries which are on constant trickle charge as the scooter is being used out and about. It has 3 solar panels on it which are flexible. It can also be plugged into mains power.
I would encourage all members to go to the ATSA Expo in your area. It not only is a great opportunity to see, touch, hold and explore new AT, but also to network, meet new people and catch up with old friends.
It was great to spend some time with my WA Associate Director, Melanie, and get some photos together.
Please check out the link below to see a short video of the remote-controlled wheelchair:
There’s nothing worse than being cold! I find it really difficult to warm up. I take at least 20 minutes to get dry and dressed after a shower and can’t wear thick jackets or extra layers as it affects my arm movements. I still need to be capable of driving my wheelchair and feeding myself on cold days. My hands and feet are like ice blocks most days. It makes me miserable, and I can’t sleep if I’m too cold. Nobody likes grumpy Mel, so here are my top tips for surviving winter:
#1 Heated throw rug – I got one last year from a friend, and I love it! I have it plugged into a smart Wi-Fi plug and use my voice to turn it on and off through my Google assistant. So handy when I go to bed freezing, or wake up shivering during the night. The smart plug app has built in timers, so I can set it to switch itself off. It usually only takes 15 minutes, so I warm up quickly. I wish I could hide under it all day!
#2 Bake – find any excuse to put the oven on! My favourite thing is to roast pumpkin. I take my time turning each piece over, enjoying the warmth on my face and hands. And always leave the oven open when you turn it off. It’s a great way to warm the house. Just be careful not to burn yourself.
#3 A warm bath – I love my bath! I have it as hot as I can tolerate. I got TADWA to make me a comfortable bath seat, and I have a wooden table for my magazine and a drink. And bath bombs are the best. The longest bath I’ve had was three hours, and yes, I had to add a kettle of boiling water after two hours as I started to get cold.
#4 Find the sun – my house was designed to maximise the winter sun. I go from window to window as the sun moves throughout the day.
#5 Hand warmers – I have an electric hand warmer that warms up to approximately 50°C, but I really like the Hot Hands hand warmers too. It is a lot lighter, they always come in sets of two, but unfortunately they aren’t reusable. Most chemists sell these, and they’re the only way my hands don’t freeze at the footy.
#6 Hairdryer – I always have cold hands while using my computer. So I put my hairdryer on my desk! I have it plugged into a wifi plug so I can turn it on and off with my phone. And it blows hot air right onto my hands! Great for when my support workers have freezing cold hands and they have to undress me. The only downside is it’s loud, so can’t use it during zoom meetings.
#7 Heated socks – yes they exist. I bought mine from Amazon. Mine have a pocket for the rechargeable battery to sit in while wearing. It has a remote control too! On the lowest setting the batteries last all day, and my feet are no longer purple ice blocks.
#8 Mulled wine – when all the above fails, mulled wine it is for me. I found Zenzen Gluhmein, a German Christmas wine, at Dan Murphys. A small amount in a mug in the microwave for a minute and I get toasty warm.
Good luck with keeping warm this winter!
***TRIGGER WARNING – LOSS AND GRIEF***
***SPOILER ALERT – “Guardians of the Galaxy 3”***
Today I went to a movie and I cried almost all the way through. This wasn’t some mushy romcom or chick flick. This was an action sci-fi film. It was “Guardians of The Galaxy 3”.
Why did I cry so much? I am a woman with a disability and the character Rocket brought out in me some deep-seated emotions around disability that just could not be held in. They burst forward and I was a blubbering mess for most of the film.
Rocket, like me, received many painful operations throughout his young life. These enhancements for both of us came at the cost of pain – real bone grating, breaking, aching pain. Seeing Rocket suffer triggered that empathy dam that burst its banks, allowing tears to roll forth in torrents. I know your pain Rocket!
The friends Rocket made in his cage caused all kinds of grief for me as well. This little creature was loved by his group of also tortured friends, with their shared pain and suffering creating a bond where together they endured and made the best of their sorry lives. When they were killed, that was it! I totally lost it. Rocket’s feelings of abandonment, pain and anger were so real and I felt that they were happening to me. Another creature misplaced in the universe.
As I write this, it’s 12 days ahead of the anniversary of Phil’s Death (my husband and partner of 33 years) and maybe this was the trigger that I needed to grieve again. It seems that loss is never finally over. When Rocket almost died, was reunited in the great hereafter and was told “we missed you, you can stay, but not yet as your time has not come”, again my tears rolled liked rushing snotty rivers down my face, with big ugly sobs to go with it.
Is death just the beginning? Will we be reunited with the ones we love? I hope so! And you know what? In the hereafter the movie characters still had their callipers and wheels, because they are part of what we/they are. We don’t have to change and be cured to accepted in the great beyond! We are what we are! LOVED!
I was not alone in my grief at this movie. My daughter beside me was just as stricken. We held hands and sobbed our way through the movie. Others probably thought we were an odd pair – the young woman and the older woman on a scooter crying uncontrollably at what is essential a children’s movie. We shared our grief together, separately, individual, but together in our journey of grief.
When the Guardian rescued the inhabitants of the factory of misery, and all the higher order creatures, the sobbing began again in earnest because creatures like Rocket were not included. Rocket would not leave them and the baby rockets were scooped up and hauled on his back to be carried through the fire and destruction and saved. Rocket risked his life to save them because in his eyes they were worth saving. They were his family. They were like him and worth life.
They had value. Wow, did that bring up deep seeded feelings of unworthiness that have personally followed me through life because of my disability. But I too am worthy and I applauded Rocket for his bravery in saving them. Who decides who is of value? Who decides who is worthy? Who decides who lives or dies? We judge a society on how it treats its most vulnerable.
I see myself in Rocket. and what I saw made me cry uncontrollably and think I would never leave this grief behind. It is now 5 hours later and I just had to write about this, to share how for me life imitates art. For me grief is still with me and like Rocket I will fight on. I will put my tears away, bolster my courage and, just like Rocket, live because I am worthy!
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