Support workers are NOT you friends. However, treating them as such is a trap that many people with disabilities find themselves in.
Often people with disabilities spend more time with their support workers than they do with family and friends. Support workers are there on the days that you just need to talk. They see us at our worst. They see everything. They are privileged to the most personal information about us. They are there when we make phone calls. They are in our homes all the time.
So how do we draw the line in the sand? How do we separate the worker from the friendship?
Is it our responsibility as participants to make sure we are ‘absolutely professional’ in our undertakings with support workers or is it the responsibility of the support workers themselves? Or does responsibility to set the standard lie with the companies for whom they work?
When is the line crossed?
You have a support worker’s phone number so you can message them. They go to Coles, and you have forgotten to ask them to get something. Sounds very reasonable to be able to contact them in this case.
What about Facebook or other social media platforms? You go to a show, a play or the movies together, so should you have the ability to tag the support worker? Probably not. They are paid to accompany you on an outing. They are NOT your friends.
The real danger here is, as described by support companies as ‘grooming’, that some of us participants are more vulnerable than others and the risk of grooming is real. I once heard about a participant being taken to a support worker’s house to buy a gaming console. That really set off alarm bells for me.
But then again, if a support worker had something for sale that I wanted to buy, isn’t it reasonable that I can buy it? After all it’s on the open market. It gets messy when we look at a participant’s capacity. Are they able to make resonable decisions or are they able to be coerced?
But does a one size fit all approach work when it comes to rules and professionalism guidelines? Should we always err on the side of the most stringent rules around the separation of work and friendships? This is where the potential for power imbalance needs to be really taken into consideration. Who in the relationship has the most power?
We can not label all people with disabilities as incapable of maintaining a healthy boundary with support workers, but loneliness and isolation can make the most astute of us vulnerable.
It’s food for thought! These people are the most important people in our lives, so of course we are going to bond with some of them more than others. If they were all standoffish and resolutely ‘professional’, would our lives then be that little bit less.
This also speaks to the isolation of people with disabilities, how we are excluded from friendships and why we rely on friendships with our support workers. Our needs for access make it more difficult to build relationships with those that do not have disabilities. Our differences can make others feel unsure of us, sometimes even fearful of us, making them uncertain or uncomfortable about how to simply be with us. Our society has made us different, we can be viewed with mistrust and from this our isolation and loneliness is compounded.
I have had some of the most wonderful, supportive support workers come and go in my life. Some I have developed a strong bond with. They are more like family than support workers. It is my hope that they have valued the trust and faith I have put into their care and friendship.
Life is forever moving forward and changing, and it is inevitable that some of those relationships had to end. Distance and other opportunities has seen my most loved support workers leave my life. And there in lays the issue “most loved”! I am able to separate our relationship as transient, however when we are together they are the most importantly people in my life. Sharing my highs and lows.
My capacity to separate them as workers means I have not been emotionally harmed by the loss. It is sad, but we all move forward to the next big thing. It also speaks to the quality of the support worker and their understanding that even though they are well loved, we all move on, and it has always been with happiness for the future that our relationships have ended.
I would like to thank the amazing support workers that have come and gone in my life and made it worth living. Yes, your friendships have been immeasurable to get me the hard times. Thank you Wendy, Michelle, Trenton and a host of supporting cast support workers that have made my life better. I won’t name my current support staff who also mean so much to me (the company they may work for might get antsy).
Not all support workers are created equally though, and some are just meant to be more than support workers and for a time they are best friends.
Participation makes my life worth living.
I am a joiner. I want to belong and contribute to my community.
As a person with disabilities this is really important to my health and wellbeing. It is well documented in psychology that those who are engaged and participate in a wide circle of social activities do better at health indicators, their mental health is better, their overall health is better.
So how do we encourage people with disabilities to participate?
We provide safe and accessible physical sites that allow everyone to be engaged.
The simplest of infrastructure can be a barrier to participation. How many venues have we all been to that do not have a disability accessible bathroom? Or are an accessibility fail because of that one step that stops a person with mobility restrictions from entering. It’s getting better, but there is still work to be done.
My personal pet hate is when NDIS providers offer services to people with disabilities, yet their understanding of disability diversity is limited. They simply do not think of the simple things like a bathroom for us to use. But what if it’s more sinister than that and they only want to provide services to a certain cohort of participants? That’s dark and scary to think that not only are PWD now commodified for their NDIS packages, but providers can pick and choose the easiest to service for maximum profit.
My second real concern is that the mainstream still have a lot to learn too. Now I will expose my shame and embarrassment. Recently I was fundraising for a big charity and attended the nationwide charity event in my city. I was excited and keen. I had fundraised really well and was proud of my efforts to contribute to this well deserving organisation.
The event started and I was impressed with how accessible it was. I was assured a parking spot and the terrain of the event at the start was perfect. I felt involved and proud to be contributing alongside everyone else in the community.
Then things went bad. We veered off the path at the very end and found ourselves on to a dirt track heading up a hill. It was goat country. My off road scooter was just not prepared for such an adventure and, after being grounded on a large rock, some wiring was dislodged and I found myself stuck.
Two members of the public and some volunteers of the organisation had to push me up a very steep hill and then carefully hold on to me as we negotiated the steep descent.
I felt humiliated and embarrassed that I was no longer an equal member of the event, but someone who required assistance to complete the course. It was hard work for the volunteers and the community members to get me to the finish line and I felt terrible, and truly mortified that this had happened. We left the event and I slunk off early holding my wounded self close to heal.
Always solutions based and putting my discomfort aside, I reached out to the organisation and together we developed a plan to make the event accessible next year. Organisations don’t know if we (as people with disability) don’t tell them what we need. My experience will make it better for people in the future.
So I guess my point here is that the hard work to make our world more accessible is still up to people with disability. Access is only as good as the person designing it for an organisation. If that person has limited experience with inclusion policies, or indeed if the organisation does not have an access and inclusion policy, it throws all the hard work and at times embarrassment back on to people with disabilities.
As a community we are all still learning, but I often wish that we were already there with access issues being a thing of the past and assurance that we can all contribute and be engaged in a safe and welcoming world.
Welcome to part two in a series of blogs focusing on some of the assisted technology and other items that I received NDIS funding for – enabling me to become a bit more independent and to continue to do the things that I like to do and, most importantly, helping me to achieve my goals.
I have been a NDIS recipient since 2018 and one of the first things granted in my first plan was a lightweight manual wheelchair. A wheelchair was one of the critical items I needed as a lower limb amputee. Many lower limb amputees are considered part time wheelchair users.
I need to use a wheelchair mainly whilst outside in the community, as a prosthetic is not an option for me and walking on crutches can be tiring at times. I also need a wheelchair to shower. I use it to transfer in and out of the shower as using crutches in wet areas is very dangerous. I also use a wheelchair to carry lightweight items as this is easier than trying to carry items whilst on crutches as both hands are needed to use them.
I do have a wheelchair that was issued through my state’s assisted tech program, but the one I was issued with was a very basic model with some minor customisation for my needs. One of the reasons I applied for a new wheelchair was that my current one had no tiedown loops to carry the chair with me in it in a wheelchair taxi or on a long-distance wheelchair accessible coach service. I found this out the hard way. Having booked a seat on a particular service, and having mentioned at the time that I needed wheelchair accessible space, I was told “no problems there”. However, when I arrived to board the coach which was “wheelchair accessible”, the coach driver took one look at my chair and said “this has no tie down loops so I cannot secure your chair and it has to go in the luggage area”. So I had no choice but to get out of the chair and use my crutches to struggle up the narrow steps into a seat.
After a great report, a couple of quotes and in very little time, I took delivery of a new HELIO wheelchair complete with many accessories including crutch carrier and an under seat luggage net to carry a small amount of shopping without effecting the centre of gravity. Most importantly it had tie down loops. The wheelchair is very lightweight and easy to fold flat for transporting in a normal car boot. It is easy to self-propel and glides smoothly on many surfaces.
Over the next year I customised this wheelchair some more with a power assist device known as a “Smoov One” that attaches to the rear of the wheelchair to assist with getting up hills or help when fatigue sets in. This device just moves the wheelchair. Steering and braking is still needed by the user, but that’s a minor issue. Another add-on was a set of off-road tires for getting across grass gravel etc if needed. I used to enjoy hiking to get to some nice locations and these wheels help me somewhat to see some of those sites again – but not all. I have an off-road Hand Cycle for more rugged areas (Check out my previous blog and video for that).
I have included a short video on some of the features of the wheelchair and I will include a video on the Smoov One power assist in another upcoming blog.
Stay tuned.
My own experience.
In 2022, and as a result of a poorly constructed council footpath, I fell from my mobility scooter and landed on the road. Fortunately this accident occurred outside a repatriation hospital, so I was quickly attended to by nursing staff from the hospital. An ambulance was promptly called and I was taken to the local public hospital, where I was diagnosed with a broken finger and bruised ribs.
Imagine how, as an able bodied person, you would cope with this sudden pain on your left side from bruised ribs and and sporting a splint on your hand. It’s painful, but you are still able to walk around, go to the toilet and for the most part go about your normal day to day living – in pain, but still able to move.
Now imagine the same scenario where you do not have the use of your legs. To move you need to use your arms to push, pull and lift your body around, BUT your ribs are so painful that doing so is excruciating. This also impacts on the injury’s rate of healing through constant movement and having to disturb those injured ribs and finger.
You beg the hospital for help. A rude nurse actually scoffs that you are in hospital for a broken finger. Your frustration at her lack of compassion and understanding is such that you whip the sheet from the bed back and proceed to lift up your legs with your unaffected arm, flopping them around to prove you are in fact “disabled” and in need of help.
You are discharged with no plan and no assistance on how to mobilise.
Two years later, you have another accident in a hostile built environment, due to a step that is not visibly defined with required signage or tactile markers. As a result, you now have a fractured clavicle (collarbone). After seeking medical treatment, you are given a sling – basically taking away your arm so you are no longer mobile – AND sent home again.
The sling is quickly discarded in the carpark because, with it on, you can not get back into the car to go home, get out at home, or basically move at all whilst wearing it.
This was my experience.
One of my friends who has no leg function, had a similar situation following surgery for Carpal Tunnel Syndrome, where she was sent home “to recover”. There is no way a person with a disability who is reliant on the usage of their upper body can simply stop using one arm and continue to function. Yet she was sent home to ‘cope’. Her pain was unimaginable and the success of the operation compromised as a result.
Three situations where the medical system has let people with disabilities down. Stories such as these are not uncommon. There are many more with people discharged from hospital with no duty of after care!
Many studies, reports and information are provided to patients about discharge planning from a multitude of sources – including NDIS discharge planning, hospital planning and even academic publications like the CSIRO (2024) https://www.publish.csiro.au/IB/pdf/IB23088 which comprehensively highlight the real issues. A major one being the conflict between the needs of people with disabilities and the hospitals’ discharge of patients with disability without real planning or consideration of the needs of the person upon returning home.
How and why does this occur in a fully functioning health system?
Lack of knowledge at the ward level and the clinician level. There is a lack of knowledge about the level of complexity an injury or surgery has on the functionality of a person with disabilities. A desire to ‘move patients on’ and free up beds at the detriment of patient care. The lack of advocacy within the health system to assist people to have a voice around their care. The lack of experience at every level of staffing in the health system – including allied health working with and understanding the complexity of physical mobilisation of people who are wheelchair users. Clinicians are seemingly simply under so much pressure that they are unable to follow the logical threads of loss of limb function due to accident or surgery and how this may impact the person’s mobility. There seems to exist a real lack of understanding or expertise, and perhaps an unconscious incompetence or lack of capacity to train up to do better.
How do we address this? More training. We need to seriously have more training for clinicians. This needs to be co-designed with people who have experienced the system failures and the malfunctions within. People with disability need to be involved in developing an education program for clinicians to avert failures in post-hospital discharge of people with disabilities when they are sent home in pain with no after care. Such consideration would reduce longer healing times and permanent and ongoing injuries commonly experienced due to such lack of care and clinical resources at accidents and injury onset.
We have to stop giving wheelchair users slings and sending them home.
I had no intention of ever visiting Europe as I hated the cobblestones in the UK. But I wasn’t going to refuse a free trip and was delightfully surprised to discover how accessible Vienna actually is.
Flights
I travelled with my support worker Amy, and our airfares were booked and paid for by the Zero Project Conference (ZPC) as part of my prize (read my previous blog about how I won it).
I had the choice of Emirates or Qatar, but one of the organisers recommended flying Emirates. So we did: 11 hours from Perth to Dubai and 6.5 hours to Vienna, with a 3.5 hour transit.
Three days prior to leaving, the ZPC still hadn’t confirmed the hire equipment I needed (a hoist with sling and a shower chair). I was getting worried, so contacted Emirates through their chat feature on their website. They agreed to take mine – both my hoist and shower chair can fold for transport – for free! So we travelled with my hoist, shower chair, power wheelchair and three suitcases between the two of us!
Checking in took ages (especially in Perth as the hoist battery hadn’t been cleared to fly), but everything arrived in one piece. I would definitely recommend Emirates. They were fabulous. Just don’t leave things to the last minute like I did, and always arrive at the airport three hours before your flight.
Accommodation
Our hotel was booked through the Zero Project Conference. I wanted to stay longer than the 4 nights they were paying for, so I agreed to pay an extra 16 nights, so a total of 20 in Vienna.
We stayed in a hotel called Roomz, near an amusement park called Prater. It met all my access needs:
* an elevator (actually they have three!),
* two single beds in one room,
* clearance under the bed for my hoist,
* a handheld shower hose and fully accessible bathroom, and
* near public transport.
For €149 (around $263) per night including a full buffet breakfast, it wasn’t cheap, but was great. And it exceeded my expectations as it has a restaurant on site, had wooden floors (much better than carpet when using a hoist), had free wifi, was down the road from an Aldi (known as Hofer in Austria), and had a cute cafe across the road that served wholesome food and drinks, as well as a burrito place nearby. I would definitely stay here again. Most staff were great and spoke English too. But it would have been great if they’d had a laundry nearby though.
Getting Around
Footpaths
Cycling is common in Vienna so I found the footpaths were pretty good. At large intersections I’d veer towards the cycleway as there was less bumps and kerbs. There were small kerbs at corners that were ok for my wheels, but might have been tricky for a manual chair user. There was lots of tactile paving as well.
Crosswalks
There are many crosswalks, but don’t expect cars to stop for you! Sometimes you just have to walk across and the cars have to stop.
Public Transport
There was a great website on accessing Vienna: https://www.wien.info/en/travel- info/accessible-vienna/accessible-public-transport-338230
Below is my experience of getting around.
Subway – Weiner Liner
The station was only a short walk away and had a lift to each platform. We could choose the U1 or U2 from that station (yes the subways are multi-level!).
It was like a maze trying to find the lift at the destination station though. Even if we’d been there before, we often got lost. There are signs but with so many levels, it wasn’t easy. They’re like small cities underground, with bakeries, shops and cafes.
It seemed the different lines had different carriages with varied wheelchair access. We used the U1 most of the time, which had carriages with access about every second train. The carriages with access had a red stripe along the side, were noted on the display with a line beside the wait time, and had a small ramp that came out automatically as the doors open. But only on the first or last door.
Once inside there were 4 seats that flipped up to create plenty of space. But not all passengers were great at getting out of the priority area. It’s recommended (and there are signs in English) to face rearwards and apply brakes. You want to do this! The trains went very fast and if there’s a fair distance between stations, you wobbled like mad if facing sideways. I likened the movement to getting naughty in the bedroom! They also braked quickly so try and keep your balance.
There were audio announcements for the next stop, but were rarely in English. It’s best to know how many stops you’re travelling and count them as you go. But then there’s the problem of knowing which side of the train to exit. There was an arrow on the display, but there were usually people in the way. Learn German for left (links) and right (rechts). Then listen carefully! It didn’t matter which side button on the door to press as it activated both sides.
Trains – OBB
There were a variety of different carriages on other lines operated by OBB. And not all were accessible. Some were low floor and level with the platform. Another type had a large gap so a station worker had to put a ramp out. We didn’t know where he arrived from, but glad he did.
Another type of carriage had a hoist at the door to lift my chair and hoist on board. Inside there were seats that flipped up to create plenty of space (even for my hoist). Most of these carriages had large accessible toilets too. And such a smooth ride!
Many of these were regional trains for which you had to have a timed ticket. Unfortunately they didn’t accept the Companion Card.
Another day we got on the train in a pram door, but at the station we needed to get off at, there were two steps down! We couldn’t find anyone to help us, so had no option but to stay on and get off at the next stop. Luckily it was level.
If we’d noticed there was no wheelchair symbol on the door, we probably wouldn’t have got on it. Or if we had got in the wheelchair door, there may have been a ramp and a way to call for assistance.
The driver did call over the PA, but it was in German and we couldn’t understand him! We had to get off at the next stop and were able to catch a tram back.
Trams
There were some tram carriages that are accessible. These had a ramp that the driver manually put out with a special tool, so you had to get on at the first door. The display screens on the platform showed a wheelchair symbol if an accessible tram was due next. I also think I heard a chime as it approached. Excellent for vision impaired passengers.
Once on board, there’s only the one spot to sit, directly opposite the door. I had just enough space to turn around and exit forwards. But wasn’t easy with the number of people on board. There was also a button to press to alert the driver that you need assistance to get off at the next stop.
Buses
I didn’t ride on any buses, but I saw plenty. All looked to be low floor, with a manual ramp at the rear door, not the front.
Tickets
A one way ticket was €2,40 (within Vienna city on any mode), but you can get a 3- day or 7-day ticket for €17,10. It’s best to get the app as it doesn’t matter what day you buy it. If from a ticket machine or service centre, they’re only valid to the following Monday at 9am only. A waste of money if you bought it on a Thursday, for example.
We actually never saw anyone checking tickets, and there were no gates to pass through. But apparently you can be fined if caught without a ticket. Unfortunately they didn’t accept the Companion Card either.
Toilets
Accessible toilets were few and far between. Some places had fabulous ones; others had none. The worst “accessible” toilet I used was in an old cafe. It was so small that the door didn’t fully shut. The best one we went to was in the Sacher Cafe.
It was decorated beautifully and had all the features required without feeling clinical.
One toilet at an exhibition about Mozart had a mirror that you could adjust the angle! Was so cool. All bathrooms had a red string to pull in case of emergency (I think). And some buttons to flush had a sensor, so you didn’t have to press hard.
A few places had locked toilets that could only be opened with a EuroKey. Much like our Changing Places facilities that you need an MLAK for. One such place was a regional train station. Lucky the cleaner had a key and was able to be called to open it for us. I think if I was to go to Vienna again, I would organise to get a key in advance or on arrival.
Places of Interest and Restaurants
Some places had access and others had none. It was hit and miss. There was a museum we wanted to go to on Vienna’s history, called Time Travel Vienna. We found our way there, and they had a ramp at the door. Only to be told the exhibition was on multiple levels and the lift doesn’t go to all of them.
They suggested we go across the road to Sisi’s Amazing Journey, where there is another exhibition that is accessible. Only to find a step at the door, and no ramp… Very disappointing. We should have called ahead or checked their websites before going.
I was surprised at how many beautiful old buildings actually had access. We went to the Shönbrum Palace, Upper Belvedere (Lower Belvedere isn’t accessible unless you’re brave enough to try the “ramp” in the garden), The Kursalon (music hall) and the Art History Museum. Only at the latter did I have to use an alternative entrance, as the main entrance wasn’t accessible. All had elevators, although at some you needed staff assistance to use them. For buildings built in the 1800s, they were worth seeing.
Some places we went to let Amy in for free, or gave us a discounted ticket (only €4 each at Belvedere)! So it’s definitely worth asking. It happened more often at government-run establishments than private places. I kept a spreadsheet of all Amy’s expenses to claim from NDIS when we got back, including her train tickets, meals, entrance fees and the wrapping of my equipment at the airport.
Famous restaurants and cafes were hit and miss for access too. Although it always paid to ask. Amy would go in and ask if they had a ramp, and we were surprised more than a few times when they said yes!
One memorable restaurant was Palm House. It was a cold, wet day and the queue was out the door. But they got people to move, put the ramps down and I came straight in to a table for two! No waiting in line at all.
In summary
There wasn’t a lot of time between finding out I had won my trip and me going. We didn’t have time to plan much. It was nice getting up each day with no plans and just going wherever we liked. But if I went again, I would definitely plan better. I recommend planning any trip, doing research on the places you want to go, and making the most of the time you have there. And Vienna is definitely a city worth visiting for more than several days.
In June 2001 I was a young and healthy 21-year-old living in Houston Texas when Tropical Storm Allison caught the city by surprise, causing deadly flooding and billions of dollars of damage to the city.
I wasn’t diagnosed with Multiple Sclerosis (MS) until 2018 and my symptoms back in 2001 were very minimal, so when this natural disaster hit, I was in the fortunate position to be physically able to get myself to safety, to help others around me and to save some of my personal items before so many of my belongings were swept away.
The house I lived in thankfully had insurance so, after some time, it was rebuilt, whilst I waited for what I had saved to dry out – thankfuI that I and those I was with were able to get to safety and move forward. Sadly I lost many prized and cherished possessions with it taking many years to replace some things, but I will forever be grateful that I escaped mostly unharmed.
Fast forward 23 years, I now live in Canberra. Although I do not predict any tropical storms like that experienced back in Houston, we do have bushfire scares here. However, the biggest difference is that my personal situation has changed a lot since this major chapter in my life.
I am now fully reliant on using a wheelchair. Requiring mobility transfer assistance, my mobility and access has changed and I depend on others for assistance tremendously.
I work full time (50% in the office, 50% at home) and live in my own home with my husband and our dog. I have some aid through the NDIS for help around the house and with some supports, but it is mostly my husband and myself at home – with me working days and my husband working nights. So, it is just me and the dog overnight.
The reason I am providing this additional information is that it just dawned on me lately… what if something like Tropical Storm Allison were to happen here in Canberra today?
OH goodness, I would be royally S.O.L. (shit outta luck).
This frightened me more than I would have expected and I realised that I needed to do something! I could not wait for something bad to happen and for it to be too late. I had to take some action!
It is a fact that people with disability manage every day in environments that are often inaccessible. We regularly develop our own strategies using our strengths to manage and adapt to changing situations that often require planning and preparedness.
It got me thinking about emergency planning, and led me to reach out and attend a Person-Centred Emergency Preparedness (P-CEP) Workshop. There are many out there and I cannot recommend them highly enough.
One of the first things this course had me look at was my living situation and my social connections. I have lived in my home here in Canberra for over 15 years, yet I do not know the people who live in my street. How bad is that? We wave but we do not know each other. What if my husband is working at night, the fire alarm in my house goes off, and I don’t know anyone in my street to call for help whilst the fire truck is on its way? Similarly at work, what if something were to happen to me there? My colleagues all know my husband’s name but, if something was to happen, would they know how to get a hold of him?
Emergency situations can be challenging at the best of times but no matter what, being prepared and having the right people and those you know or trust alongside you through it all can make a challenging situation just a little bit easier. So how could I ensure that this was available to me should an emergency happen?
For me the answer was simply business cards. On the front I have all my details (name, address, phone number & email address) and on the back I have my emergency contact details – including my husband’s and my parents’ phone numbers. These simple cards have now become my conversation starters.
My plan is to now go and introduce myself to the people on my street, to leave these business cards at work, with some support workers and friends. Sharing my situation, making people aware and feeling more confident that, should something happen, there will now be people around me in the know and able to help if needed.
Sharing information opens the door to enabling others to help should the need ever arise. People are always more willing to help if they know 😊.
This will hopefully provide me with more comfort that, should there be an emergency, I now know I will not be alone and that the connections I have made will bring much more. We can always use more connections. But if someone I know sees that I need help, they can reach out too!
Introduce yourself to your neighbours. I know I will be!
You never know when you may just need each other.
As a woman of a certain age, I have noticed a change in the way I am perceived.
I have always been disabled. Had mobility aids since birth and always thought the primary factor for the discrimination I encountered was related to my disability. Well, welcome to the new age of being older.
I am now seen as an elderly lady on a mobility scooter. Not a disabled woman on a mobility scooter.
So, like a slap of reality, I am now encountering age discrimination.
I have white hair – trendy cutting edge white hair, but still white hair. This labels me as old.
Where in the past I put down being sidelined because of disability, now I can add being aged as well. I am simply too old to be relevant.
They say age is a state of mind. Well hell, my mind is sharp and active and connected to happenings of the world.
I go to hip festivals and dance with the young ones. I’m a cool person aye, BUT I am still old(er).
Not old enough for a senior’s card but, when I am, I will wield it like a badge of honour. Unlike many of my peers I will be blessed to have reached old age.
You might be reading this and think, go you, living the life. However, there is a more sinister side to the intersection of age and disability. There is a hidden cost to growing older. According to NDIS National Quality and Safeguard Commission research (2023), people with disabilities are 5 times more likely to die of preventable illness than the general population and die predominantly much younger than the general population. 49% of all people with disability who die early have physical disabilities.
The intersectionality I now have to navigate in my life is age and disability. Well, I’m not going down without a fight. There is plenty of fight in the old dog and I’m ready for it and it seems my life depends on it.
I need to be proactive in my own healthcare and I can. I need to be vocal at my GP and my specialist about my needs and expectation of their care for me.
Discrimination in the healthcare system is real for people with disabilities. A study by Roger’s et al (2015) reported that 1 in 17 people with disabilities that present for medical treatment feel discriminated against. Anecdotally this is much higher.
We are often ignored, not believed or misdiagnosed. I have a bloody loud voice (my croaky voice) and I will use it to make sure that everyone receives the care they need and deserve in this, our lucky country. I’ll be doing this education one clinician at a time. Hard work, but guess what? You can do it too. Think of all those other people with disabilities unable to articulate their needs. Our work will help them. Let’s smash that discrimination.
I’m not a granny on a scooter. I am a warrior on my electric steed, waging war on ageism and ableism. Adding another bow to my quiver of “what needs to be torn down” in our society.
Image: selfie of a woman (Tammy the blog’s writer) wearing glasses, with a trendy white hairstyle, wearing a pink t-shirt with “volunteer” printed and a pink/orange neck scarf. By her side is a younger woman wearing the same t-shirt, sunglasses and a baseball cap. She is Michelle, Tammy’s support worker. They are working at Hay Day’s recent music festival in Hobart. Other people are interacting behind them.
I have a burning desire to be included and to experience as much as I can before I pop the perch.
I am disabled. I use wheels to get around but, in this day and age of anti-discrimination and inclusion, this should not stop me from doing everything my heart, energy and pocket desires.
And so, it was with this motivation behind me that I applied to be a volunteer at the Hay Days Festival in Hobart. This festival brings together some of the most cutting-edge artists locally, nationally and internationally. I wanted to go! I am a big fan of Genesis Owusu after seeing him perform at Party in the Paddock 2023.
Yeah, an old chick like me loves Party in the Paddock, with my most memorable moment seeing Lilly Allen and singing along with her song “F##k You” with about 4,000 other people a few years back. I may be disabled, but I’m not dead and I love to get amongst it. Maybe a result of being an older mum with a younger adult child or just being hip. Who knows?
Financially the cost of a ticket to the two-day festival was not going to break the bank, but it did mean that I was going to have to cut some of my other activities to attend. I could have paid, but there might have been other things I would have to miss out on to compensate.
And so, with this in mind when my daughter said she was applying for paid work in the bar at Hay Days I thought, well why not see if I can volunteer. I have skills. Heck, I have a degree and a couple of grad diplomas. I’m smart. I could be useful and then get a bonus ticket for free. Well not free, but free for doing work. I work for the ticket, a 6-hour shift in fact.
And so I applied. I made it clear on my application that I was a wheelchair user and disabled. I made it clear that any jobs offered to me must be suitable for me to do in my chair. I made full disclosure, let the dice roll on my application and hit send.
A few weeks later I received a reply. I was in! They wanted me. I say this in a surprised way because, let’s be honest, discrimination is real. It still happens to people with disabilities and, to be brutally honest, people are often scared to give people with disabilities a go.
Even though I worked in education for 33 years, they didn’t know me. They didn’t know what I could do and there is still so much unconscious bias and fear in our world directed towards people with disabilities.
So, I rocked up on the first day. I scoped out my workplace for the next day and then settled in for a day and evening of absolute sheer bliss. I even bought a baked potato from a food vendor with some sign language skills. (Oh, that’s another thing: when things are really loud, I can’t make my voice project for people to hear me, so I sign. NOT a barrier, but certainly something to be accommodated).
I checked out the loos. Look, to be honest, that was an issue. 4,000 people could use any of the toilets at the festival, but I could only use one. The accessible toilet was so accessible that it seemed to be used by the 4,000 abled bodied people too. Not a great thing in terms of cleanliness – especially for a person with a disability who has to touch everything in the loo to get on the pot so to speak. The ‘ableds’ (abled bodied people) can just squat over the seat, make a splash, leave a cup or two in the loo for extra obstacles, leave some toilet paper strewn around, touch very little and leave.
Unfortunately, not so easy for folks with chairs and wonky legs and dodgy bits, who have to touch all the grot left behind by those unnecessarily, and unfairly, using the facilities meant for those of us with true accessibility needs. To be honest, I only went to the loos once a day, holding on for as long as possible, minimising the need by drinking less so I didn’t have to go more than once. On day two I went and the nice ambo folks next to it had to fish a cup out of the actual toilet and help me negotiate it. Thanks legends. You folks go above and beyond as vollies (volunteers).
On thing not so great about attending many events is that, as a person in a chair, we sit about navel height to everyone else. So imagine trying to see an act at a concert if all you can see is the person in front’s bum. Hemmed in by a sea of bums is not my idea of a good time, but hey each to their own.
But there is NO bum viewing for me or other persons in wheelchairs at Party in the Paddock or Hey Days. We get a viewing platform that has us positioned above the sea of bums and provides us with a clear view of the stage. It also mitigates the risk of some drunk dude or dudette landing on our laps, or accidentally crashing into us whilst vigorously dancing to the bands. This is so great. That’s accomodation and I for one really appreciate this.
I bopped and bopped to Genesis and The Jungle Giants and PNUA, squawking along to, “Stay Blessed”, “Rakata” and “Cold Heart”. It was bliss. Best night EVA! (Well, one of them).
The next day I rocked up (rolled up) to my shift at 11.30am. Signed in and collected my vollie t-shirt, so pumped that I got a uniform. So I forgot to mention that when you get me as a vollie, it’s a two for one deal. I come with my very own support entourage. My support worker Michelle. So Michelle and I rolled over (well she walked) to our workstation. Our duties for the next 6 hours were to check tickets using a scanning thing (much like my old Job checking in books as a librarian) and then I would strap a wrist band on to the owner of the ticket. In the next 6 hours I touched so many hairy, skinny, and largish wrists that I could do a thesis on the human genome variation and how it affects wrist diversity. (Maybe in my next life, I’m really not that invested right now).
Before starting the shift, we were briefed on what to do what to expect and then sent forth to work. I loved it. Bopping between customers, bopping with customers and strapping on wrist bands. Even though I could not really have huge conversations with people when the music started. I could sign/gesture enough to make myself known.
The only real thing that hurt my fragile ego was when I said, “I bet I’m your first disabled volunteer” it was a “yes” reply. But why I wondered. The next was being told that when I was being considered as a volunteer, event management presented me to my team leader as an offering which she accepted with a “yeah I’ll take her” like I was a risk. Man, I have mad skills and you all should be looking at the person and not the disability.
Apart from that small infraction of ableism, the whole experience was just awesome and I would do it again. (Just please fix the toilet situation).
What I’m also advocating for is that, hey, if you have a disability and think you can do something with expertise and skill, go for it. If you are skilled and able then it’s not a charitable offering to allow you to work. It’s equality.
My time as a volunteer at Hay Days was the best, most excellent experience and your’s could be too.
Image: a selfie of a woman with grey hair, wearing sunglasses, a pink shirt and orange/pink scarf and a huge smile backstage on the lawn at a music festival. Two men are standing in the background.
On International Day of People with Disabilities (#IDPwD), I was pumped to watch the Disability Leadership Oration on ABC by Natalie Wade. The conversation was not what I expected, but it was just what I needed to hear. After seeing the Oration, I started thinking about what it was really like growing up with a disability.
Natalie Wade is a human rights lawyer and a total boss in everything she does. Natalie happens to be from the same place as me – South Australia. I first saw her at my previous workplace. Of course, it was in the elevator of a tall government building and I wondered, as a fellow wheelchair user, if she ever felt like she was “faking it until she made it”?
During the ABC address, Natalie talked about her experiences growing up in the 90s and advocating for her rights. Listening to her speech felt like holding up a mirror to some of my childhood memories. Growing up as a disabled child in the 90s meant being used as a test model for society to determine if disabled people could genuinely belong in the mainstream world, rather than being institutionalised and segregated from society.
Although I am currently in my peak leadership prime, I must convince myself that’ll I am good enough before wheeling into a board meeting.
I have noticed that the younger disabled community nowadays proudly refers to themselves as ‘disabled people’. This made me wonder about the shift from ‘person with a disability’ to ‘disabled person’. I started questioning if my perspective on disability is still stuck in the 90s (like my music taste). Although growing up in the 90s had its cool moments like girl power, Tamagotchis, and snap pants, it was a difficult time for disabled kids.
I’ve grown up and worked in the housing sector for over 15 years in government and the NDIS landscape. However, it can still be challenging to be the only disabled person at the table of executives. Sometimes it feels like society talks about the disabled community as if we are some unknown alien species.
When Natalie addressed the Nation, I agreed with her sentiments and teared up while listening. Natalie’s reflections on her life shed light on my own experiences of growing up as a disabled child in the early 90s.
In 1992, I left the South Australian Crippled Children’s Association and started attending a mainstream school. My parents had to fight hard to get me into the same school as my siblings. Teachers would openly talk to my parents about how I should go to another school, that I wouldn’t fit in, that I wouldn’t keep up. Everything was said in front of six-year-old me sitting in my pink wheelchair. My parents didn’t listen to them. So I was the first and only disabled child using a wheelchair at the local school. I often felt excluded and unsupported. It’s not a solid foundation to prepare the leaders of the future.
Whenever I asked for help with schoolwork, my teachers would advise me to focus on my life skills. The school believed that I could not have a career or live independently. No one asked me what my future aspirations were.
Natalie’s speech resonated with me, highlighting the immense challenges disabled people face. Her words exposed the historical trauma that many of us experience, constantly feeling inadequate and unworthy due to society’s perception. This unique form of imposter syndrome is all too familiar to my community. Growing up, I was implanted with the belief that my disability was a flaw that needed to be hidden to assimilate into the norm. For decades, I carried this perspective with me unquestioned and ingrained by people around me.
So, I overcame barriers and made my aspirations like it was my duty to exist in a world not created for me. This is one reason why society views disabled people as resilient. It is not by our own making; we have no choice. Sometimes it feels like the idea of being successful and disabled at the same time cannot occur simultaneously.
When I became a mother to my daughter in 2019, I made a personal commitment to ensure that her life would surpass mine in terms of opportunities and experiences. However, at that time, I viewed my disability as a deficit. But my disability is not my weakness. My own ableist beliefs were unchecked.
The disabled community has evolved, and we are no longer content with simply asking for inclusion. We demand more than just the bare minimum of support and services. We deserve equal access to education, employment, housing, and all aspects of life, just like anyone else. This might seem like common sense in 2023, but Natalie presented a radical concept to the nation a few weeks ago.
So, after hearing Natalie’s address, I will take on leadership roles. It is time for me to move past the outdated narrative of the 90s that shaped my childhood identity and tackle the outdated thinking disabled people are still faced with today.
My parents raised me to be as independent as possible. With three younger brothers to care for, Mum and Dad didn’t have a lot of time to help me do basic things like feed me. I had to find ways to manage, and this has made me a creative thinker.
So when I got stuck in a lift at university, unable to reach the button, we found a solution: a stick. My first prototypes were wooden from Bunnings and I quickly realised that these simple tools allowed me to do way more than press lift buttons. At home I could turn lights on and off! And type if I couldn’t reach the keyboard! And move things closer or push them away. Dad was able to make a holder and attach it to my wheelchair so I could take my stick everywhere.
In the early 2000s I was invited to be a guest speaker during disability awareness training for all staff at Main Roads WA. I introduced my stick and got participants to guess what I could do with it. At the end of the session, a man at the back of the room put his hand up and asked why I didn’t have fibreglass sticks. I told him I’d not heard of them. He took my address and dropped three or four off to my home the following week. They are the flag poles from the children’s crossings flags. Main Roads work with WA Police to supply the flags to the lollipop men and women. They often had some returned due to slight damage or dents and were happy to pass them on to me, for free!
At first I found them heavy and awkward to use, plus they were narrower. But very strong – no more breaking wooden ones! I bought stoppers to fit to one end, and plastic tubing for the other, which help to protect my teeth when using it in my mouth. In 2015, when I got my third assistance dog Upton, we added an elastic band. This was because he found it difficult to pick the stick up off the floor. He quickly learnt to pick it up from the band. It also stops things sliding all the way to my nose when lifting them up!
So what can my stick do? A lot of things. For example:
I even sleep with a stick as it helps me move my sheet and blankets up and down! The only thing I use more every day is my wheelchair. Without my stick, I’d probably need 24 hour care. I enjoy time alone at home so I’m grateful that I have a low-cost, simple solution.
And this simple solution with a profound impact on my independence has recently won me awards! When I saw PDA promoting the Simply Open Awards earlier this year, I made a 5 minute video on what my stick can do for me. I submitted it in September and found out in the last two weeks that I won not one but two prizes! The Wild Card Award from all entries in Australia, New Zealand, USA, Canada, England and Ireland, with a cash prize of £750 (AU$1,371.31). This was announced in a livestream on Friday 1 December on social media, hosted by Open Inclusion.
The second one was announced on World Human Rights Day, 10 December. Two entries from each country were considered for the global awards. I’m surprised and proud to announce that my stick hack video was in the top two in the world! My prize is flights and accommodation to Vienna, Austria in February to attend the Zero Project Conference!
Thank you to the judges, sponsors and the organisations who run these amazing awards. We hear a lot about expensive assistive technology, but sometimes it’s the simple, everyday things we use that can help the most. I appreciate this opportunity to showcase my stick to the world, and encourage you to enter next year.
Never in a million years did I expect to win. My little video about my stick, so important that I can’t live without it, impressed the judges so much. I still can’t believe it. It’s going to be freezing in Vienna (and I hate the cold), but I’m looking forward to representing PDA, Australia and people with disabilities who want to live great lives. I hope I’ll do you all proud!
Thanks,
from Melanie
1800 732 674
