This has been said to me more times than I’d like to hear lately. The last thing I wanted to be known as was the angry old disabled woman. I was never angry with the world for the fact I am disabled. I wasn’t angry with my body. I’m an atheist so I couldn’t be angry with God. I don’t think people who know me would describe me as an angry person. I laugh a lot. I have an extremely sarcastic sense of humour. I’m compassionate, motivated and most of the time pretty badass. I get angry but I’m not an angry person.
Yet here I am defending myself to a stranger online who thinks I seem like an angry person because they didn’t like that stood up for myself, that I tried to educate, that I didn’t take bullshit. They don’t like it when I call out bad behaviour…
So I just got some bad medical news and I have some intense stuff to go through before I know the full damage or what to expect. But not much is going to change, I’m just going to be less available for others for a while. Study goes on, comedy goes on. There will be interruptions and some difficult stuff. But I need to focus on my own care, more than ever and I have been trying to build a support team.
Yesterday I reached out in a number of ways for help to select people and it was nearly as difficult as hearing the news my genetics have failed me. I reached out to people because I don’t have family nearby and what family I have left can’t help.
People say “they don’t know what to say”. Well, I decided to write some tips after I spent 30 years of my life caring for my Dad with cardiomyopathy until his death (plus my own chronic illness story).
A few pointers, thinking about the social model of medicine/disability…
1. It’s hard not to react, but try “I’m feeling <briefly insert feelings> about this. But it’s not about me, how are you feeling about all this?“
Try and wind back sadness or shock the moment you talk about someone’s difficult diagnosis. It buys into the ableist view that Dx is bad. Dx can prevent you from dying from something you didn’t know you had – or be helpful in understanding why life has been different and make life easier. But also, forgive yourself for reacting, it’s human!
Some Dx may mean you know you have less time on the earth than others…but if you take time to read about this, for many people, they learn to value what time they have left and that’s not always a bad thing. In my case, I’d rather know and have parameters around that, than drop dead suddenly in front of you.
2. Pause for a minute when unsure what you can offer. Try “Thank you for trusting me with this. I am feeling < briefly insert how you feel about it>. I am not sure I have the ability to deal with this as well as I would like to. I want to help, but < briefly express limitations>, so is there anything else I can help with?“
It’s not about you and your discomfort or schedule. This information may make you uncomfortable, for the other person it’s much more than ‘uncomfortable’. People who are sick are not a burden, but they often feel like (even subconsciously) they are.
Don’t use platitudes instead of real and genuine communication because you don’t know how to deal with the information – it’s not being helpful. It’s unintentional gaslighting and that’s not your fault, its something we’ve been taught is okay. But it’s another capitalist social convention aimed at isolating people for being sick. “You’ll be alright” “What doesn’t kill you” “This will pass” (I’ve been guilty of this one) “Take all the time you need”, “Things are much better with medical technology now”, “You’re tough, I’m sure you will be fine”. These are just plain dismissive, even though we might have thought they were ‘positive’ things to say.
3. When you mess it up, don’t go silent. There is also not necessarily a need to apologise either. Just say “I didn’t do that well. I’m feeling < briefly insert variations on the two approaches at #1 and #2 above>”.
I think this should be fairly self evident, but apparently it’s not! When you genuinely say you care about someone, ghosting is never okay, whether a friend or any other relationship – no matter how uncomfortable your stuff up made you feel. (Note: this is very different to when someone has abused you – you have every right to put in hard no contact boundaries when someone has treated you with contempt).
4. Be clear but kind about what you can assist or not assist with.
The last thing people getting tough medical news is people around them who are just bullshitting about wanting to help out of some perceived obligation.
It’s hard enough for the person dealing with this, it’s really not about you and if you are genuine about the person affected, you won’t play the appearances game.
And remember it’s okay not to do this perfectly. These are just suggestions, as long as you work to centre the person experiencing the difficult Dx, you word it how it works best for you.
So, our family has been through a shit-ton of well…shit. I am prepared to accept that there is evidence for intergenerational trauma. But I have been saying that then that also means that there is grounds for intergenerational resilience. But, I want to talk about courage instead.
This tweet (pictured below) made me realise just how much I am really f’n sick of both the word resilience – particularly as Melbourne is in yet another lockdown right now. The tweet from Zandashé L’orelia Brown (@zandashe) reads: “I dream of never being resilient again in my life. I’m exhausted by strength. I want support. I want softness. I want ease. I want to be amongst kin. Not patted on the back for how well I take a hit. Or for how many.”
Resilience, seems like another measurement of the hits we have taken, not a measurement of our own…
Being back on stage for Midsumma Festival was awesome – particularly as I faced one of my biggest, life long fears by doing so. That fear was of playing piano and singing in front of a crowd. I also got to share a green room with some awesome people for Pride of Our Footscray Community Bar‘s comedy event “You Can’t Say That in Front of Your Father”.
I battle imposter syndrome and gut wrenching anxiety every time I get on stage and the thought of singing on stage was mortifying prior to 2019.
Then I did some work with Richard Lawton, the author of Raise Your Voice, and it changed everything. If you are battling a fear of speaking or singing, I strongly recommend his book or classes.
I battled messaging from my childhood that says artist pursuits are not valuable or acceptable. But it’s part of who I am and it took until my mid 40’s to overcome those fears and just decide to do it anyway.
And one of the biggest bags I carried around was wanting to learn to play piano and being told, “only smart people play piano and your little fingers will not let you”. Family criticism of my singing voice stopped me singing in choirs and other public places from about ten years old.
I faced it the first time in front of a large audience for a show called Tickets on Myself on opening night of Melbourne Fringe 2019. Then of course…lockdown…and workplace injury stopped me in my tracks.
I am also doing a PhD and so performing is taking a back seat, but it’s still in the car with me!
Whilst I have been singing on stage for a while now, it’s been sporadic and terror filled. So at Midsumma I performed my first song composition after some piano lessons with the incredible Spencer Hughes booked through Scarlett Music. Spencer was so patient with me. The song is a rudimentary tune but fun. Two out of four performances I felt like I killed it, the other two not as happy with, but still well received. But I also got great crowd feedback.
I am often surrounded by other performers who look at me like I’ve got two heads for talking about these fears. And I admit that I wish it had been natural and encouraged throughout my early life so I could feel like they do about performing, instead of carrying this awfully heavy baggage, like I have throughout my life. But that baggage is much lighter now, and may soon just be a handbag instead of a costume trunk.
But being back on stage was awesome and I have to say, I am glad I didn’t give it all up after the last 12 months of recovering from a workplace injury. Performing online and on community TV during that time helped my recovery enormously.
But this was pretty special. And fear can go fuck off.
Apologies for being quiet, I am contemplating an unexpected house move (argh) and doing a PhD and Midsumma Festival performances. It gets a little busy sometimes.
I have also been reading some documents a little bird in the extended family sent me and digesting those. But I want to talk about the fighting women in my family. The military women and the perceptions of women who have served in fighting forces since…well…since forever really.
My father’s first wife served in WWII as did he. His sister, Anne, was in the Navy in WWII. And me, I served in the RAAF. I recently wrote a piece on sexual harassment in the defence forces for the YWCA. And something I know all of the women who served in my family experienced, was judgement about our efforts from family.
I remember an Uncle (from Mum’s really conservative side of the family) saying…
I like April people. My Dad was born in April. My son was born in April. Today I had a wonderful chat with another April person in my extended family that I didn’t know existed. They have a similar awesome sense of humour to my other awesome April people I know.
I’ve written about Dad’s birth and his jokes about being born on April Fools Day.
Today is Dad’s birthday and I want to talk about the silly idea that women’s internal reproductive organs are animals and that this thinking existed right up until the early 1900’s. This is not an April Fools joke, this is very real.
A taster…of what I will be writing about next in relation to intergenerational family stories, what my research has uncovered and in particular Jane Brady’s death at 82 in Sunbury Mental Hospital.
I’ve been thinking about my Dad a lot lately and his dark sense of humour and how he engaged humour to soften the blow of difficult times – as the best medicine. Interesting for a man born on the 1st of April 1923 and who resented that date for the rest of his life. CW: low level discussions of end of life conversations.
My Dad joked at the most inappropriate times, but always made it about the ridiculousness of the situation instead of mocking the people in it.
He would often tell me how much he disliked people who played ‘practical jokes’ on people. Being born of the 1st April and growing up in the 1920’s and 30’s in the Collingwood/Fitzroy are of Melbourne meant he never got to experience a birthday that wasn’t filled with anxiety about what someone might do to him in the name of joke.
Tonight at 10pm on Channel 31 Melbourne and Geelong, (Ch44 Melbourne) or livestreamed nationally from https://c31.org.au/tv/live/ I am featuring the awesome advocate, model and speaker Jess Cochran (pictured). Videos are available on YouTube too.
In the middle of lockdown I started a community TV talk show, produced by BentTV and called Talk-ist! The plan was to use the basic premises of neurodivergent (ND) communication for the show.
Different people think differently, not only because of cultural background, life experience or professional aspects but because their brains are “wired” to work differently.
Neurodiversity embraces the notion that individuals born with differently wired brains and those with acquired wiring differences have important contributions to humanity.
Talk-ist has a focus on disability and queer pride and features prominently community members and allies.
ND people – we often (not always) don’t do small talk, take conversations off on interesting tangents and love our interests with an intensity that we should like a specialised deck of cards in trivial pursuit.
So Talk-ist was born around three part guest focused interviews (sample YouTube):
Here are some of my favourite moments from guests to date:
Bent TV: Talk-ist | You did what? | Vanessa de Kauwe. Vanessa runs Science Alliance, an award-winning science program for neurodiverse and disabled and gender diverse young people, at the Australian National University (ANU).
Bent TV: Talk-ist | Newsworthless | Ki Hayward. Disability advocate, speaker and consultant Ki and Jacci turn fluff into stuff talking about mobility aids!
Bent TV: Talk-ist | Nerd Wars | Yenn Purkis. Yenn, autistic author, speaker, blogger and neurodiversity champion talks Lord of The Rings and gender.
Bent TV: Talk-ist | Newsworthless | Sally Goldner AM. Rainbow diversity warrior, speaker, consultant, performer and a ton of other skills, Sally and I talk Emu’s in bars!
Bent TV: Talk-ist | Nerd Wars | Anastasia Le. Gender diversity speaker and consultant, radio host and comedian Ana and I chat about Pokémon! Squeeeee!
All my guests have been a joy! I’ve loved doing this. A big thank you! We are lucky to get a show a month in, with my PhD schedule, but when we do…it’s literally some much fun.
#womeninaviation #IWD2021 Today is not only about struggle but also celebrating successes. Today, from my first career in aviation, I remember, applaud and honour three pioneers in aviation (there are more than three women of course, but here’s a start):
Bessie Coleman. Bessie Coleman was an early American civil aviator. She was the first African-American woman and first Native-American to hold a pilot license. She earned her pilot license from the Fédération Aéronautique Internationale on June 15, 1921, and was the first black person to earn an international pilot’s license.
Sophie Blanchard. Sophie Blanchard was the first woman to work as a professional balloonist. Known throughout Europe for her ballooning exploits, Napoleon Bonaparte promoted her to the role of “Aeronaut of the Official Festivals”, replacing André-Jacques Garnerin. On the restoration of the monarchy in 1814 Louis XVIII named her “Official Aeronaut of the Restoration”.
Katherine Wright. The Wright Brothers manager in many respects. She championed and promoted their work (and secured funding) in early aviation in Europe and battled the Smithsonian for them to be recognised. Whole books have been written about her work in early aviation and yet she did her job so well that she is a background figure in the history of flight. Yet, without her, they would not have been able to “get off the ground”, so to speak.
*If you can’t list women who invented things and did things (often for less recognition) in your field of choice or interest – maybe spend some time today seeking out some of this information.
In breaking news this morning, it has been revealed it was Mrs. Potato Head broke the recent scandal taking the Mister out of Potato Head.
Speaking to me this morning, from her safe house in the Hamptons, this is how the conversation went:
Mrs Potato Head revealed “I couldn’t take it any longer. He’s not even a mister. I left him for another woman years ago, she’s a later version of Potato Head than me. And I really feel sorry for Mister, I do“.
I could hear the nervousness in her voice, so I pushed “Really, you feel sorry for him? Or are you really scared?”
“I feel sorry for him, the press has made such a big deal of his limited choices. Of course, I get a choice. I can be a Miss again, or a Ms, or even a Mx. But the brand won’t let him use Master, they are concerned about BDSM references. I really shouldn’t be talking about this, it’s putting me in danger of them inflating my lips again, and it’s already hard enough to talk”.
“Oh, I see. So is there some kind of unspoken Bro code at Hasbro, that you are breaking?”
“Oh definitely. The bro code of Hasbro. You’ll end up a has been, bro, if you speak up about the sexist bullshit we endure at work”. I could hear her struggling to hold back tears.
“I am so sorry you are going through this. But irony is, that you’ve always been gender fluid, isn’t that right?”
“Completely! We all know there are millions of kids out there switching it up and switching my and Mr Potato Head bits around anyway, all quite healthy really. But the HasBro code…”
“What are you putting at risk here talking to me today? Mrs. Potato Head?” I asked.
“Oh please call me Dom. Mrs. Potato Head is just a brand inflicted upon me by the bro’s at Hasbro. I go by Dom, short for Dominatrix. Mister always said I was a ball breaker. I reminded him he had no balls…Oh, I gotta go, Hasbro have been sending me threatening videos and my partner just said we got another one”.
I could hear the commotion in the back ground and a voice crying, “OH MY GOD! The Wiggles, they sent the WIGGLES – Hot Potato!!!”
And then there was a loud sigh…and click. She hung up. I have since tried to make contact with them and they are safe and are seeking legal advice.