Written by PDA WA Associate Director Melanie Hawkes
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.
Written by PDA TAS Associate Director, Tammy Milne
***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!
Mark Pietsch is PDA’s NSW Director and yesterday he was interviewed on ABC Illawarra radio’s Breakfast Show hosted by Melinda James about the NDIS National Disability Insurance Scheme.
His segment is at 1:58:48.
Check it out. Mark has some great points and suggestions.
Written by Melanie Hawkes – PDA WA Associate Director
As a woman with a physical disability since the age of two, I never thought I was worthy of a man’s desires, or capable of fun times in the bedroom. With high needs in daily personal care tasks like toileting, dressing and showering, sexual matters never crossed my mind. What kind of man would choose me over an able-bodied person? They would be crazy to take on someone with additional needs.
Then in December I got Covid-19. I actually thought it would kill me, as I only have about 20% lung capacity. This is because I have a severe scoliosis and reduced muscle strength to cough. A simple chest infection can mean a hospital stay.
Two days before testing positive, I found out I was eligible for antiviral medication. So I was able to get them which meant that my symptoms were mild and only lasted three days. But it was during my isolation that I had a surprising conversation with one my support workers that changed my life. She told me about disability sex workers. I’d never heard of them, and didn’t even know it was legal here in WA.
In January 2023, at the age of 43, I had my first session with a male escort called Chayse. It was the first time I had been naked in front of a man, outside a hospital. A nerve-wracking experience, but Chayse made me feel comfortable and relaxed as he gave me an erotic massage at his place.
I felt out of my depths in terms of sexual knowledge, and didn’t even know that women masturbate (I thought it was something only men did). But what I didn’t know about sex, Chayse didn’t know about disability. We had a lot we could teach each other.
Unfortunately I didn’t get a ‘happy ending’ during the massage, but it wasn’t through lack of effort by Chayse. I booked him again for a second session, two weeks after the first. This time he came to my house.
I was more relaxed than the first session and I had paid for a mix of massage and escort. I had emailed him my list of fantasies: things I wanted to experience with a man. Top of my list was kissing, as I had never been kissed before and had no idea how to. Chayse was a good teacher and he didn’t disappoint. The three hours together flew by. I’ve seen him five more times since.
What I love most about Chayse is the way he makes me feel. He sees me as a woman first, with the same wants, needs and desires as any other woman. My disability becomes irrelevant. Sure we need to do some things differently, but it isn’t a barrier to accessing physical touch or intimacy or pleasure.
Melanie with escort Chayse
It is also a very safe way to explore sexual matters. By paying for the service, I have felt in control. If Chayse did something I didn’t like or made me feel uncomfortable, I trusted him to stop. I am immobile when in bed. It’s not like I can get up and walk away; a vulnerable situation to get myself into. But by paying a professional (a ‘sexpert’ as he calls himself), I maintain control. It is in Chayse’s best interest to do the right thing and satisfy his customers, or I won’t book him again. It’s no different to seeing an OT for equipment advice or a physio for aches and pains.
Chayse is very body positive and I have learnt from him that every body is beautiful, even mine. It was just after our second session that I got more comfortable telling people about him. I actually wanted to tell the whole world what an amazing service it is, how it has given me a new sense of worth, increased my confidence and made me feel amazing. But I was scared of people’s reactions.
The more people I told, the more positive reactions I received. They were really happy for me, and could see it made me happy. So I emailed the Deputy Editor at Take 5 magazine with my story idea about using escorts.
She loved the idea straight away. But I had to decide whether I wanted to reveal my identity, change my name or show my face in photos.
It wasn’t an easy decision, but again I had the support of family, friends, and of course Chayse. The key message I wanted to convey through the story is sexual health is a basic human right, according to the World Health Organisation. Just because I have a physical disability doesn’t mean I don’t deserve intimacy and pleasure. I’m not ashamed of wanting it for myself, only that I didn’t start many years ago.
Melanie with a pet snake
I’m speaking out and sharing my story now in the hope that others with disabilities realise they too can have it. The hours I’ve spent with Chayse have been some of my happiest. We’ve slow danced, had baths together, slept together, been swinging, I even rode in his V8 ute! I’ve bought lingerie and toys for the first time in my life. It has opened up a whole new world for me that I never thought I belonged to. These are opportunities I’d never thought possible, and I want other people to have their own fantasies realised.
I self-funded the first four sessions, and claimed the last three on NDIS. Check with your LAC to see if you can too. I self manage my funds, but believe the NDIS should see escorts as an essential service and fund it adequately. Relationships are tricky enough for able-bodied people. For some people with disabilities, escorts are the only way we can have a safe, positive sexual experience. Why deny someone that because of cost? It’s an activity those without disabilities take for granted.
I must thank those who have spoken out before me, who gave me the confidence to do the same. Amy Calladine wrote about her experience on MamaMia, Hannah Diviney spoke about acting on The Latecomers on the ListenAble podcast, and TV shows like The Swiping Game and Better Date Than Never have made talking about sex more mainstream and acceptable.
So what’s in store for me in the future? I have been blown away by the response of my Take 5 story since it was shared on news.com.au. I’ve had messages from journalists from as far away as Norway and the UK asking to interview me. And I’ve loved all the comments on Facebook and messages from strangers thanking me for my story. It’s obviously an important topic that not many are happy to discuss. I wasn’t prepared for my personal story to be popular worldwide, and I haven’t decided if I want it to be world news!
For now, Chayse has given me the skills, knowledge and confidence to put myself out there. He is helping me to navigate the field of online dating as a pathway to meeting a potential partner.
But if I have no luck, I’ll be asking the NDIS for a bigger budget next year.
Krystal Matthews is PDA’s SA Associate Director and an incredible disability advocate with strong professional experience and personal interest in disability accommodation and homelessness resolution.
On Monday 24th April at 6pm AEST, Krystal will be part of our next webinar “My Home, My Life”, which will be around housing options for people with disability, home modifications, building an accessible home and what home and support options are possible with the NDIS.
You can hear Krystal talk about the upcoming webinar by going to:
This webinar is a must attend for anyone wanting to learn more about housing options and how to get a foot in the door of accommodation that is accessible, suitable and a place to call home.
Our four presenters will provide you with a solid understanding around the different types of disability housing, eligibility for NDIS funding, accessing support, current and upcoming legislation and accessibility modifications.
Run via Zoom, this FREE WEBINAR is available to everyone. You don’t have to be a PDA Member, but you can also SIGN UP FOR FREE PDA MEMBERSHIP by going to www.pda.org.au/membership/ .
To register for this “don’t miss” opportunity go to:
Physical Disability Australia (PDA) exists through the dedication, hard work, loyalty and commitment of its staff, board and members to support our country’s disability community.
Our most valuable contributors are often the ones who work in the background. Trish Johnson is one of these incredible individuals who has been Finance Officer here at PDA for 12 incredible years, helping behind the scenes to ensure that things run smoothly and successfully.
Trish, we are so grateful for your involvement and efforts and so proud to have you on board as a colleague and friend.
With many water sports adapted to be more inclusive and more and more opportunities becoming available to try these fun activities, maybe one of these options will whet (or “wet” 🤣) your interest.
Fishing
For any regular anglers or people eager to give fishing a try, a number of not-for-profit organisations throughout Australia offer recreational opportunities for people with disability to pick up a fishing line and join fishing trips on shorelines, jetties and boats in rivers, oceans and estuaries. Supported by trained volunteers and using modified equipment, interested people can experience the joy of fishing: Fishability is based in WA – https://fishability.org.au FishAbility by Fishcare Victoria – https://www.vrfish.com.au/get-involved/fishability/ Fishability QLD – https://fishability.com.au Fishing for the Disabled in SA – https://ioofsa.org.au/community.htm Fishing For Therapy – Sydney, NSW – https://www.ansansw.com.au
Sailing
Disability inclusive sailing clubs operate throughout Australia with many making sailing accessible to everyone. Sailability is run by volunteers in every Australian state, working jointly with local sailing clubs to offer opportunities to sailors of all abilities. (https://discoversailing.org.au/sailability/)
Surfing
The Disabled Surfers Association of Australia runs all-inclusive surfing programs to people with disabilities throughout Australia. Run by volunteers, this organisation brings the joy of surfing to anyone wanting to ride the waves. (https://www.disabledsurfers.org)
Canoeing and kayaking
Canoeing and kayaking are a great water sport that can be adapted and enjoyed by people of all abilities. It’s also a wonderful way to experience the water – whether for fun or competitive sport. The recent addition of para-canoe to the Paralympics has encouraged a surge in popularity for those who want to take a lazy paddle to the next level. Whatever your interest level, there are clubs throughout Australia running accessible programs. (https://www.sports.org.au/canoe-kayak)
Scuba Diving
Disabled Divers International is a not-for-profit organisation providing disabled scuba diving internationally through dive schools. Running a number of programs DDI strives to make diving more accessible for people with disabilities. (https://www.ddivers.org)
Water Skiing
A number of disability-inclusive water skiing options are available in Australia, offering fun opportunities to PWD with a range of physical and visual impairments to give adaptive water skiing a go. Disabled Water Ski Australia can get you started. (https://disabledwaterski.com.au)
Water (Aqua) Aerobics
These fun classes can be adapted to a wide range of disabilities, with the water working to reduce the impact of mobility limitations. Many pools and aquatic centres throughout Australia offer programs for people with disabilities to enjoy this fun fitness option.
Swimming
Swimming is a great way to maintain fitness, build muscle strength and target core stability. Water buoyancy also helps with movement and it is easily adaptable. Many local pools and aquatic centres provide programs, warmer pools and equipment options for people with disabilities.
Kite-Surfing
For the Adrenalin junkies amongst you, kite-surfing has seen great advances in becoming an accessible sport for people with disabilities. Modified seating equipment, tandem harnesses and wheelchair land-based trainer kites help to bring this sport to many Australians living with disability. Not yet readily available, you may have to do some research locally. (https://www.ikointl.com/blog/kitesurfing-people-disabilities)
For those of you simply wanting to enjoy the beach, Accessible Beaches provides an incredibly useful and welcome way to locate your nearest accessible beaches. Covering information such as mobimats (beach matting), beach wheelchairs, disabled parking, accessible changing rooms/toilets, ramps, pathways and direct beach access. (https://accessiblebeaches.com)
Whatever your jam is on or in the water, there are some fun sport and recreation options and some great opportunities to get your feet wet and try them out.
We’re excited to be running our next webinar around housing options for people with disability, home modifications, building an accessible home and what home and support options are possible with the NDIS.
Monday 24th April at 6pm AEST
This webinar is a must attend for anyone wanting to learn more about housing options and how to get a foot in the door of accommodation that is accessible, suitable and a place to call home.
Our four presenters will provide you with a solid understanding around the different types of disability housing, eligibility for NDIS funding, accessing support, current and upcoming legislation and accessibility modifications.
Run via Zoom, this FREE WEBINAR is available to everyone. You don’t have to be a PDA Member, but you can also SIGN UP FOR FREE PDA MEMBERSHIP by going to www.pda.org.au/membership/ .
To register for this “don’t miss” opportunity go to:
Written by Tammy Milne – PDA’s TAS Associate Director
Today I caught a bus. So what’s so unusual about that you ask, when millions of people all around the world do it everyday!
What makes it unusual is that I was able to catch a bus because the infrastructure, the bus and the bus stop were accessible to me and my wheelchair.
I was able to catch a bus, go out for dinner and on to see a movie. That is freedom, that is choice and that is control! I am the master of my environment in this small way in this instance, when all the stars align or more pointedly when government, bus companies and councils work together to make sure that transport is accessible to everyone.
This occasion was anomalous, not the ordinary and certainly not something to be taken for granted. There are thousands or at least hundreds of variables that stand in the way of this being an ordinary, everyday occurrence for all people with disabilities.
The Bus Stops. Their placement geographically is a variable that cannot be ignored. If the bus stop is on a steep gradient on a street then the bus ramp is inoperable and/or dangerous to use. This stops people with disabilities using the bus.
But I have seen wondrous engineering skills implemented to ‘fix’ this situation. Bus stops with elevated and flattened boarding points on the street. So really the only impediment to all Bus Stops being accessible is funding and skilled engineering.
The Bus. As yet we still do not have 100% accessible transport in this country. In some areas it’s close, but even 1% or 5% of inaccessible buses can mean someone is left on the side of a road because they can’t get on. They are unable to access their community and their lives are not the same as those who can easily hop on that bus.
The Other Passengers. Those seats with the little wheelchair sign are dedicated for PWD, not crabby teenagers, or lazy people who like the first seat they can find. The other day I was on a bus and a young man was busily playing on his phone as I tried to manoeuvre into the wheelchair section of the bus. He occupied one section, sprawled on his seat. He either didn’t notice the amount of times I had to reverse and go forward, reverse and go forward and still be unable to get into the space or he didn’t really understand that he was impeding my access. I gave him the benefit of the doubt. Maybe he had a disability. However, when his stop came and he bounced off the bus I was crabby.
So, young man on the 501 to North Hobart, check your privilege and also (unlike toilet seats where you put them down after using as a courtesy) return the bloody bus seat to an upright position. Have you ever tried to lift those seats up from your wheelchair? Often all six of them? It’s hard and can’t be done without assistance. So people please make sure those seats are put back up again. In Melbourne I have noticed that the seat automatically returns to the upright position once the person leaves their seat. Food for thought Transport Tasmania?
The wheelchair. It has become a ‘thing’ where well meaning professionals prescribe wheelchairs that are great at home, at the theatre in many other situations – but they are large, heavy and are not suited to travelling on a bus. So whilst they may well be extremely comfortable to sit in at the theatre, the act of getting to the theatre may be another story. If it’s too big for a bus, or if I don’t have transport of my own (such as a custom car or van), then is it really fit for purpose? Is my life really better off with it?
So it seems a missing piece in the consideration of our transport needs lies in whether our wheelchairs are actually fit for purpose and able to be used and transported. This is an issue for professionals, manufacturers and PWD themselves to advocate for more innovation in this space. We want wheelchairs that are fit for purpose and that easily allow us to access our communities. Make them lighter, more comfortable, more durable and suitable to use on public transport. There should be NO compromises. You should not have to give up catching a bus because your new $20,000 wheelchair is not fit for purpose and possibly requires you to access an additional $75,000 because you need a purpose-built van to carry it and this van requires an additional person to drive it – further diminishing your independence and adding to your cost of living.
As you see the price of freedom has many and varying costs, but none are insurmountable with greater thought, planning and engineering solutions. I want to continue to travel with my trusty, Green Card for all zone cost of $1.92. I want to save the environment by not using a car. I want to stop congestion by not taking up road space. I want to free up parking in the CBD and I don’t want to have to pay for it either.
Written by Sarah Styles – PDA’s QLD Associate Director
How many times do we encounter people who view those different to them through a narrow view? Assumptions are made and perceptions born coloured by their interpretation of their own life’s experiences. Simply put, they see others subjectively.
It is most useful to learn how to view others objectively. That is, we are not influenced by personal feelings or opinions in considering and representing facts. It can be confronting and quite difficult to accept and to believe truths coming from very different realities to our own, but it is possible.
One situation the disabled community talk about a lot is around able bodied people asking inappropriate questions. The most common questions resemble “What happened to you?” The common response to this question is that it’s no ones business. Often this is because the answer involves private medical information. Information no one else is asked to divulge – especially to quell a stranger’s curiosity. Another reason this question is frowned upon is because living with a disability is all encompassing. Everyday activities like eating are not straight forward. Much planning is required. Since so much time is already given to these tasks, it’s the last thing we want to think about while we are working or enjoying the moment. The third important reason is that we may not be in an emotional place to talk about it. Our limits can be quite narrow some days. We may require every bit of mental focus for our task or simply trying to sit up can drain our energy quickly. And the fourth reason is due to trauma. We have often been ignored, ghosted, not believed or even abused for years. This takes a toll. Many of us have medical PTSD. Many have families who don’t believe them which adds to the impact. They don’t want to be reminded of that trauma nor relive it.
I think it’s important to discuss these trauma responses. Too often they are misinterpreted as anger or rudeness and understandably so. It is possible to tell the difference between a rude or entitled person and a trauma response for those who have been exposed to both. To those who, like me, have lived experience with trauma either as an individual and/or a supportive loved one, we know these responses make interacting with others harder for us and them. It is important we learn to recognise our personal trauma responses, then find tools to assist ourselves when confronted. This does take time.
I urge you to please be kind to yourself by validating your experience and being gentle and understanding of yourself.
The two rules I live by are:
#1: never explain yourself. Adequate Facts can be shared without going that far.
#2: Never take anything personally. Validate and own everything relating to yourself and recognise what does not belong to you. Let that go with the other person as that is their’s alone. I have noticed a difference in my life putting this into practice. For example, during COVID times I got on the lift at a train station. It was a small lift and my powerchair filled it. A woman entered it with me just as the doors were closing. Not only was she not wearing a mask and I was at risk, but she coldly asked an inappropriate question. I was physically doing poorly and didn’t appreciate the situation in the slightest. I felt she was brash and rude, but decided it best I did not make assumptions about her. While neither of us were warm and friendly, we also were not rude. She listened as I educated her of my reality and she did not sneer back like many do. Sneering happens when we take things personally – hence my second rule. I recognise that there are a number of causes for a gruff manner and I learned that judging her would have caused myself stress which I would have projected onto her creating an inflamed interaction. She had clearly experienced life’s harshness in some way herself. While I do use these questions to educate people, when I’m not well enough to do so, I either give a quick to the point answer or I tell them I am not up for a conversation today.
May we all learn what it means to be kind to ourselves and others especially with those who are different.
