Where do I know you from? Prosopagnosia or why faces and furniture are alike

I was at the Canberra Disability Expo yesterday. This is one of those events where I get to connect with peers, give a talk and generally rock the casbah. As I was walking out the door a woman said ‘Hi Yenn.’ I responded with ‘I’m sorry. I have face blindness, so I don’t do faces. Where do I know you from?’ She responded, ‘I’m the Minister.’ I managed to complete my faux pas with calling her the name of the previous Disability Minister! We worked it out and she didn’t seem too put out. As an aside I was pretty happy to be recognised as a disability advocate by a Member of Parliament! Although when I recounted the story to a friend, she said ‘yes but you do have rainbow hair’ – fair point, I guess! But the essence of the story is that I don’t recognise faces.

I am not alone. I have a thing called prosopagnosia or face blindness. I once saw it described as the part of the brain that most people use to recognise inanimate objects is the one with people with prosopagnosia use to identify people’s faces. As an example, I have seen a lot of tables, but I would struggle to tell one from another. I am not sure if that is true, but mine is definitely a different approach to facial recognition to most people’s.

I recognise people by other characteristics than their face. Hair is a good one although people often change their hair style or colour which can pose a problem. Life would be so much easier if everyone had name tags!

I suspect that people might think my inability to know them by their face as a sign of significant rudeness. I can attest that it isn’t – it is not because I don’t remember them, just their faces. I am good with names, and I am good at remembering details about people, just not their face! I think in reliably recognise about ten per cent of people through looking at them. I am better with people who look androgynous for some reason. I remember when my brother returned form a couple of years overseas in the early 2000s, I worried that I wouldn’t remember him! I am told that when I was a small child my mum took my brother and me overseas to visit her dad who was dying. My dad stayed behind and when I saw him when I returned after three months, I was terrified of this scary man with a beard! When I was at school this issue would contribute to my very low social status. There were two girls who were bullies and they looked similar. I always got their names wrong and it caused much unpleasantness!

I think of all my neurological differences prosopagnosia is the most frustrating. It is not a common enough issue that people know about it. If I tell someone I am autistic, they will probably have some idea of what that means and will likely have experience of it. However, if I say I can’t recognise faces people tend to be a little baffled.

I used to be highly ashamed of my face blindness and not tell people that I had issues. I would pretend I knew who they were whilst frantically trying to figure out where I knew them from through our conversation. I remember talking to someone for twenty minutes at a gallery opening and not having any idea who they were! Turns out they were the filmmaker who was working on documentary featuring me and three other autistic people!

I am no longer ashamed about this neurological quirk. My brain is beautiful complete with all its little foibles. (OK, schizophrenia probably isn’t a ‘little foible’, but you get the picture). If I meet someone I don’t recognise, I now say, ‘Where do I know you from?’ followed by ‘I have face blindness and I don’t remember people. I am not being intentionally rude. It is just a ‘thing’. Sometimes I follow this with ‘The part in my brain that recognises faces is the same as the part in other people’s brains that recognises furniture. I have met a lot of tables in my time but I don’t generally remember them!’

One issue compounding this is that I have something of a profile. This means more people know me than I know, so often I have never met someone at all, but they know me. Very confusing!

As I get older, I meet others with prosopagnosia. It is nice not to be alone and also not to be ashamed of this. And if I meet you for a second or subsequent time, don’t be surprised if I have no idea whatsoever who you are! It’s not personal.

About Asexuality – and why I have never had an argument with my cat!

I am Asexual and Aromantic. This means I find sexual contact very unpleasant and have no need for a romantic relationship. I grew up in the 1980s and 1990s. When I was younger there were only three available options for sexuality – gay, bi and straight. I figured that women were a little less icky than men in terms of sex so therefore I must be a Lesbian. I also thought people were supposed to be in a relationship, so I had a number of female partners. Most of these relationships were largely platonic due to my strong dislike of sex. I struggled to find partners and felt I was somehow lacking as a human due to this. I didn’t really want a partner but I thought it was what you were ‘supposed’ to do.

A while back and before I came out as Asexual, I read a news story about a man who hadn’t been in a relationship for many years and murdered women as a result of his extreme sense of sexual frustration – and presumably a fair whack of predatory misogyny as well! I thought to myself ‘gee I hope I don’t ever get frustrated so badly that I murder people!’ Then I reflected that I had been single for many years with no sense of sexual frustration at all. If anything, I was happier to be single than to be in a relationship!

Shortly after that I learned about Asexual identities and figured that was probably me. It made a lot of sense to see myself as Asexual and Aromantic. The reason I wasn’t frustrated or lonely was that I didn’t need or want a sexual partner. There was nothing ‘missing’ in my life in terms of sex, dating or relationships.

Asexual folks face discrimination, but it differs from other bigotry around sexuality. Asexual people are seen as being prudish and sad. I am neither prudish nor sad! I am actually very sex positive – I just don’t want anyone doing it with me! People are quite welcome to do whatever they like sexually as long as they are adults, it is consensual and doesn’t include me! People make assumptions as to ’why’ I am asexual. “Did something happen to you?” etc. Does anyone ask that of a heterosexual person?

I am very happy to just live with my kitty Sunflower. I am very happy to own my house by myself. Living alone is awesome. I can watch whatever I want on TV and listen to whatever music I like. I can sleep on whichever side of the bed I choose and go to bed – and get up – whenever I feel like it! And I never argue with my cat and my cat doesn’t have in-laws who judge me! Also my cat has never cheated on me with another human! I could go on…

There are some issues with being single – not necessarily just for Asexual folks. When I get old who is going to look after me? If I lose my ability to work who is going to pay my mortgage? When I was in hospital for three weeks recently, getting someone to look after my kitty was challenging to say the least!

I like being Asexual most of the time. For one thing it makes some parts of my life less complicated! Asexuality is not well understood. People see it as being a response to trauma – and indeed some people who have experienced trauma do avoid sexual contact, but Asexuality is a valid sexuality and not necessarily ‘caused’ by anything. Even though I didn’t have the words for it. I knew I was Asexual when I was a child and young teen – before I had any sexual contact.

The ‘A’ in the LGBTQIA+ acronym stands for Asexual. It is one of the most misunderstood letters in the acronym, along with the ‘I’ for Intersex – and that is a topic for another blog post! People think the ‘A’ stands for Allies. It really doesn’t and I think almost every Asexual person you talk to finds that irritating and kinda disrespectful and invalidating too!

Often Asexual gets shortened to ‘Ace’ which I love. I feel pretty ace about my sexuality! I have a bunch of things to be proud of and one of them is my Ace identity. I think a lot of education is needed in the area of Asexual pride, including in the broader Queer community.

There are different sorts of Asexuality. Some people identify as ‘greysexual’ which means they are OK with some sexual contact. This may vary depending on their partner and their mood at the time. There are Asexual people who like romantic relationships but not sex and there are people like me who get described as ‘Aro Ace’ or Aromantic Asexual which means they don’t want sex or a partner. And as with all sexualities, people can change over time. I avoid setting identities in stone as they can change and that is OK. For some reason the idea of a ‘phase’ in the gender or sexuality area is viewed as a bad thing and a reason for bigots to invalidate the experience of Queer folks. In reality these things do change for some people and that is totally OK.

I am proud to be Aro Ace. It took me a long time to get to a point of this as I thought my Asexuality was a source of embarrassment or a reason for shame. I felt there was something ‘wrong’ with me. It isn’t. There isn’t. It is part of me and I am as proud of it as I am my other identities.

This is the Asexual flag – I have a big one in my hallways and a progress pride flag in my bedroom – a Yenn can never have too many pride flags!!

Prison, disability and identity

The other night I had a memorable and beautiful dream. This is unusual because most of my dreams are unpleasant and involve me getting fired from jobs or dying. The nice dream involved me flying over the Australian desert landscape. It went on for ages, and it was stunning. Flying dreams are pretty rare for me. In fact, I remember the one I had before this one. I remember it distinctly and I remember what date it was. It was 2 September 1994, and I was in jail for what would be the first of many visits to Her majesty’s hotel. I was in the police watchhouse, with two other prisoners. It was my first night as a prisoner. The cells were cold and uncomfortable. I finally went to sleep and had this beautiful flying dream. I was flying over the mountains where I grew up. It was transcendent. And then I was woken up by a police officer yelling at us to wake up. This was a pretty memorable experience, mostly for negative reasons.

I suspect that a lot of people doubt that I was a prisoner. I am nice and respectful and do impressive stuff and so forth. However, I can assure you that I was a prisoner between 1994-2000. I consider myself a highly ethical person with a highly unethical past. People often tell me that my ‘interesting’ history is an important part of me and I should embrace it. However, from my perspective, this is complicated. Yes, my past is obviously part of what makes me who I am, but it is not something to be proud of. I was not a political prisoner, I was a criminal. While my incarceration was definitely a justice response to a mental health issue, I did have agency and choice and I made some very unhelpful decisions, some of which involved victimising people. I was aggressive and self-destructive. I made very poor choices and had no sense of responsibility. So yes, complicated.

My experience does highlight a significant issue though – that of people with disability and psychosocial disability ending up in jail because there is no other place for them. When I used to go to court my lawyer, the wonderful Vince, would show the magistrate photos of my art. The magistrate would look at these and invariably say, “I don’t want to send this person to jail but there is no alternative”. Sadly, I think this is true now for others in similar circumstances to me, thirty years later.

Prisoners tend to be invisible. Out of sight out of mind. We also live in a society which likes to feel that criminals are being adequately punished. Actually, the purpose of prison is meant to be rehabilitation not publishment, meaning people should leave ‘reformed’. As a former prisoner I can attest that this is rarely the case and prison breeds prison.

I have never been judgemental about crime. I obviously don’t condone it, but I do understand that people do things for a reason. Autistic people can end up in jail for a number of reasons. They can be coerced into criminal behaviour by others; they can be traumatised by bullying and abuse and fight back. In my case I first got in trouble because I had a criminal partner and I became afraid of him when I realised what he was up to, felt I couldn’t leave him and so committed crimes with him. After that I became institutionalised and struggled to live in the outside world.

I have actually spent 10 years of my life in institutions – prisons, psychiatric hospitals and mental health residential services. It is a temptation to be in an institution. There is no responsibility, you don’t have to worry about buying food or paying a mortgage or rent. Even now, thrity years after being in jail, I think that being in residential mental health care is tempting, especially when I am unwell. These days I am highly responsible and I don’t think there is much risk of me going back to institutions but that pull can be strong, especially if life is very difficult and you feel out of control.

One thing about my journey which is surprising is how little resistance I have experienced in accessing things like employment and study. I have never been refused a job due to my criminal history – although for some of my jobs I have had to answer quite a few questions about my history! My police check always comes back clear due to the age of my convictions and I have held a security clearance in the past. I have a social media friend in the USA who is an African American ex-prisoner. He said how surprised he was that I could get a professional job because in America I would not be able to. I am not sure if this is a cultural difference or a racism issue or a combination, but it does make me reflect on how fortunate I am to live in Australia. Although I think a lot of ex-prisoners in Australia can have issues finding work too. I have the benefit of not looking like a stereotype of what people think a criminal ‘looks like’ which I think makes a difference in this space – and this makes me sad to be human! That first impression assumption can be an issue and can compound exclusion.

I was actually diagnosed as autistic shortly after I went to jail in 1994. The clinician who diagnosed me came in to visit me three times to do the assessment. I have spoken with her since, and she said it was a bit daunting going to jail, even as a visitor! She also said she realised that she needed to be honest and up front with me to gain my trust. I treasure that statement because I don’t remember what I was like then and it gives me a window into my past. Obviously, I was me, but I was a different version of me. I do reflect on that time as formative. Very unpleasant but formative.

And I hope I don’t have to wait another 32 years for another flying dream!

Not a choice to be trans but definitely a choice to be a bigot

Content warning: brief reference to suicide

Today I blocked a bigot who said hateful things about my hair of all things! My hair, as you can see, is rainbow – both for aesthetics and also to reflect my very strong sense of Queer pride. I am entirely unashamed to be who I am, in terms of many things – my autism, ADHD, schizophrenia and especially my Queer identities as a non-binary / trans person and an Asexual and Aromantic person. I came out as gay when I was 16 so I have identified as Queer for the majority of my life. My gender identity has never been cis female, but I didn’t have words for my gender until I was in my forties when I came out as nonbinary – a life-changing, affirming and empowering experience. Sexuality and gender are a very important part of who I am. I think for most people their gender and sexuality are probably a big part of their sense of who they are, both for Queer folks and cis gender and heterosexual folks too.

I want to talk a bit about gender diversity from my own perspective. I am a minor public figure who is trans / non-binary. This means I get a nice platform to talk about it but unfortunately it does attract bigots and haters. I gave a TEDx talk about autism, gender diversity and allies in 2023. (Here is the link if you want to have a look – https://www.youtube.com/watch?v=gSC1P49jOec&t=156s) When I gave the talk, I said that I knew that as soon as the talk was posted on YouTube it would be attacked by bigots. Sadly, I was 100 per cent right – although I should note that the vast majority of comments on my talk were positive.

Bigotry around gender is everywhere and it is horrible. People – including young people and kids – have attempted suicide in response to transphobic hatred. There is a repeated statistic I came across when researching my TEDx talk that 40 per cent of transgender people have attempted suicide. Even I struggle with my wellbeing when people deal hatred to me, and I am a big scary, middle-aged bolshy activist who has been doing this for a very long time! The hate eats into my sense of self and makes me feel bad. However because I am a big bolshy activist, it mostly just makes me angry and feel the need to write blog posts challenging hatred, such as this one!

Things are definitely changing but I always worry that we need to not get complacent and assume everything is improving and going in the right direction and as a result do nothing. Inclusion doesn’t seem to work like that. Activism requires an ongoing effort or things will almost certainly get worse. Attitudes vary across the world too. I discovered the other day that I would now not be allowed to visit America – or even transit through an American airport – because my passport lists my gender as X. This is horrific when the bigots are also the government! Yup. Activism, allyship and advocacy are an ongoing and necessary process. I think this is true of other movements as well, such as Civil Rights and Black Lives Matter.

A few important points around gender diversity from my experience:

Don’t assume a person’s gender by looking at them. You really can’t tell – and you don’t need to know anyway!
Aim to be an active ally (maybe check my TEDx for more detail on this!)
Every trans person is ‘trans enough’. There is no exam for this! If you identify as trans then you are trans
Gender and sexuality are not the same thing
If you want a very quick and easy way to demonstrate your allyship and support, pop your pronouns in your email signature
Clothes, shoes, hair makeup and jewellery do not have a gender
The concept of a ‘phase’ in this space is unhelpful and often disrespectful
If someone comes out to you be positive and supportive. Be aware coming out is a big deal and often takes a lot of effort, courage and preparation to do. Also, if the person coming out is someone close to you – such as your child, sibling, parent or partner – the coming out conversation is likely to have taken a lot of courage and be very stressful for the person coming out
Wear ally things like lanyards, pins, clothing etc. A survey by Minus18 found that just a perosn wearing rainbow was likely to make a Queer young person feel safe. I would recommend the Minus 18 website (www.minus18.org.au) for merchandise and information or Wear it Purple Day site (https://www.wearitpurple.org/wear-it-purple-day-2026)
Educate yourself about trans experience. There is some great content to view or read – including a fair amount by me!
If you are a parent who has an issue with their child being trans, please put your issues on hold. Your child needs you as a supporter and an ally that they know they can come to. I always say that if you reject your child based on their gender identity the best outcome is that you lose their respect and the worst outcome is that you lose your child. Park the bigotry and be there for your child. They probably look to you for guidance so your support is essential
Autistic folks are statistically significantly more likely to be trans and gender divergent than their neurotypical peers
You don’t need to have medical interventions to be trans
You do not need to have gender dysphoria to be trans. Many trans people – including me – have gender incongruence which is a different thing. There is also a lovely thing called gender euphoria which often happens when a trans person affirms their gender and feels great about it
Someone else’s gender is not really your business.
Don’t ever ask someone about their physical sex characteristics. I always say if you wouldn’t ask your mum or your aunty a question about this sort of thing then don’t ask me! Could you imagine someone asking you about your penis or your vagina? I imagine you would feel it highly rude and invasive – and that it was none of their business. And please NEVER use the phrase ‘I don’t care what’s between your legs’ to a trans person – or anyone else.
Please don’t intentionally misgender folks – and if you do so accidentally, don’t make it a big issue. Just apologise and move on and try not to do it again
Never call a trans person by their ‘dead’ name. It is hurtful and disrespectful. Once again, if you do so in error, just apologise and don’t do it again. Also, please don’t ask a trans person what their old name was or what their ‘real’ name is
Gender diversity is not a ‘lifestyle choice.’ Sexuality is also not a ‘lifestyle choice.’
Being trans is not a decision
Oh, and we are not recruiting, trans women are not trying to somehow undermine women’s rights or ruin women’s sports (I can never figure out how that one is meant to work!) and we don’t have an agenda to convert people. These accusations sound silly but they are often used to attack us and cause a lot of damage in our community. Speaking as a trans person, my only agenda is to cuddle my cat, live a good and fulfilled life and to be in a world where people respect me for who I am and don’t subject me to hatred, bullying and bigotry.

Trans folks who have a big profile being publicly out and proud helps other people. I myself will not stop talking about these things no matter how much negativity I receive for doing so. If nobody stands up to be counted in this area and other areas around inclusion and intersectionality, then the bigots get free reign to peddle hate and the immense damage that can cause. And this isn’t just a job for people with a public profile. Everyone can be an ally. Every instance of advocacy and allyship works to turn the tide of hatred and promote inclusion and respect and just a world where people like me can feel safe and not be afraid of hatred and bigotry.

Oh, and to the bigot that I blocked today: My hair is ficking awesome!!

Yennski with pride -themed hair

Yennski versus fame

When I was a child, I went through period of wanting to be ‘rich and famous’. At the time I didn’t know what it entailed but it seemed like a good thing to be! These days I am not really rich or famous…. Well depending on your perspective! And perspective is important when talking about such things.

I have done a fair number of media appearances over the years. I used to want more of this, with the view it might make me more renowned. But then I had a few thoughts which made this seem a little odd. Firstly, if I am on the news, is anyone going to remember that in a years’ time? Is someone who gets featured on the news or in an online article a celebrity? Probably not! There are loads of opportunities for becoming well-known but most of them are pretty fleeting.

Also is life somehow better when you have fame? I am suggesting it probably isn’t. If anything, it might be worse. You are under a lot of public scrutiny, if you do anything embarrassing everyone knows about it and you have very little privacy. I actually wouldn’t want that as a lifestyle.

The other thing is simply time. For example, in the 1940s-1960s there was a very well-known singer called Frank Sinatra. My grandparents’ generation would have known his work, my parents’ generation would have known his work, my generation would probably have heard of him and maybe know he was a well-known singer back in the day, and the generations younger than me probably have never heard of him! Fame – even genuine fame – doesn’t make you immortal – it just postpones the point where people no longer know who you are! Can you think of three people who were alive and well-known in the year 1026? I know I can’t. No amount of fame gives immortality. There is that poem by English Romantic poet Percy Shelley, Ozymandias:

I met a traveller from an antique land
Who said: Two vast and trunkless legs of stone
Stand in the desert. Near them, on the sand,
Half sunk, a shattered visage lies, whose frown,
And wrinkled lip, and sneer of cold command,
Tell that its sculptor well those passions read
Which yet survive, stamped on these lifeless things,
The hand that mocked them and the heart that fed:
And on the pedestal these words appear:
“My name is Ozymandias, king of kings:
Look on my works, ye Mighty, and despair!”
Nothing beside remains. Round the decay
Of that colossal wreck, boundless and bare
The lone and level sands stretch far away.

— Percy Shelley, “Ozymandias”, 1819 edition

A lot of people who seek fame are not really folks I would like to spend my time with, and the intentional pursuit of fame is, I would imagine, pretty exhausting! I used to want wealth and fame, and I sort of got them, depending on your perspective! I actually have just about the right amount of recognition as I would want. People know and love my books, appreciate my talks and it is remarkably easy for me to find a job if I want one! I long ago gave up seeking recognition as I realised that in the scheme of things it is pretty far down the list of things that I prioritise or want for myself. I have more recognition than most people but not a huge amount. Likewise, I have enough money but not as much as some. I am grateful for what I have in both areas and it does seem I have a sort of goldilocks approach to recognition. I know that fame or wealth or probably not the most helpful of things to strive for. If they happen, well and good but if not it isn’t a disaster.

My goal in terms of the legacy I leave when I am gone is not how many people knew who I was, how wealthy or famous I was or how many likes my Facebook page got. My aim is to touch each person I meet with kindness and respect. I want the world to be just a little bit better when I leave than it was when I arrived. I don’t seek immortality – mostly because it doesn’t really exist. I just hope that when I die people will reflect that I was a positive presence in the world. And you really can’t ask for much more than that.

Singing, hotels and downtime – avoiding overload and burnout

I am a self-confessed workaholic. Left to my own devices I would do an 80-hour week – or more! I struggle to take regular downtime and because of how my income generation is structured there is always something to do. I haven’t run out of tasks since I went into business in 2024. Most of my time is taken with my PhD and university assignment marking but I also have some NDIS clients and other academic work plus I give talks and write books. I can easily work for seven days a week – and often do. I struggle with taking regular breaks. While I manage this quite well most of the time it can become problematic.

Earlier this year I started doing two things which helped with ensuring I get downtime. The first involve singing. In January I joined the Canberra Qwire. This Qwire has been running for over thirty years. It is a Queer community choir and did is one of my absolute favourite things to do. Why? Well, I am a very creative Yennski. I write, I give talks and I paint and draw. If I am as some people have told me – a ‘genius’ then it is around creative pursuits rather than mathematics or physics. I am happiest when I am creative and it tends to come naturally to me. Singing is a wonderful creative output and singing with over 150 other people is incredible. The lovely thing about Qwire – or one of them at least – is the community focus. It is also one of a very small number of things that I do regularly which are just for my own enjoyment.

I look forward to rehearsals every week and I am now part to the furniture so to speak! Plus, it is a Queer community thing which makes it even more wonderful. In addition. It is great for downtime because I have to practice in my own time – the organisers send MP3 files for each section for each song and then members can practice at home. I am a tenor which suits my vocal range very well. I look forward to Qwire every week. Due to circumstances (i.e. my dodgy health) I missed the big performance and the Eisteddfod, so I am looking forward to getting to perform later this year. It really is a fantastic downtime / me-time activity and I highly recommend singing in a choir – or the Qwire – if you like to sing.

The second regular downtime thing I do that I started this year involves once a month booking a night at a nice hotel and turning my phone on silent, reading books, watching bad TV and ordering room service! The hotel I usually go to for this purpose has lovely staff who now recognise me and say they hope I have a nice staycation! Of course, this is a bit expensive and younger Yenn would not have been able to afford it but I am very grateful that I now have a good income which can stretch to a once a month hotel visit!

These two activities – which are not hugely involved or difficult – probably mean the difference between me being able to be busy worky Yennski and doing too much and getting burned out! The final downtime strategy I have is small and furry and says purr – yup, Sunflower is a downtime activity! I spend a long time every day cuddling my furry feline friend – this is good for both of us, I think! Cats can be amazing therapists. She is also quite adept at standing on either me or the laptop making work challenging to say the least!

Another strategy is – where circumstances allow – I listen to music as I work. Music is a huge part of my life and my wellbeing and always has been. I have a lot of great playlists designed for different purposes. Music makes even unpleasant or uninteresting tasks manageable and even enjoyable. I did this when I worked in the Australian Public Service.

The last strategy I have for making downtime is simply forcing myself to stop work and do something without an output – like reading for watching TV!

I don’t want to jinx myself but I haven’t been burned out since 2015 and that was more related to unpleasant and demanding social interaction issues and not work! I do need to be aware of the need to build in these strategies if I don’t want to experience burnout due to work though! As my mum often reminds me, I am not 30 any more!

Managing time to ensure we don’t overwork or get bogged down with stressful things can be challenging. However, I suspect I have it easier than some. Imagine parents – it isn’t really an option to ignore the children because they are stressful or other things are competing for your attention! I suspect my silly, untenable workload is a lot less stressful and more easily managed than the experiences of many parents! I can very easily just stop working and do something else. Anyway, I think we all need strategies that work for us to retain – and build – our ‘spoons’ and manage our lives and work, whatever these might look like. These are probably different for everyone, but I think it is a case of ‘do what works’. I am glad I have my strategies and it has taken a while to get them, but they work nicely.

Getting some kitty time

I am big, bold and beautiful – and why body shaming is never OK

I am a big person. I have been a big person since 1999. Before that I we as a small person – and for a while a very small person due to drug misuse issues and not eating. One thing about being a big person is that it is frowned upon, at least in the country I live in. While noting that my body shape is not something I should need to justify, there are reasons I am big and the main one is that weight gain is a side effect of medication I have needed to take for 31 years for my schizophrenia. If I don’t take these meds my life becomes scary and hellish. If I stopped taking the meds I imagine I would drop a few clothes sizes, but my life would be extremely unpleasant, and I would be unable to do all the good things I do!

For as long as I have been around, being overweight or big was frequently seen as a person somehow letting themselves go or intentionally overeating. Fat shaming has been a thing for a log time. Also, a lot of unhealthy habits do not result in the judgement faced by those who are larger. If you drink a few glasses of wine at a party for example you are unlikely to be judged for this, even though it is unhealthy, but if you are big then people love to judge. And I don’t think the prejudice around body shape is often actually about health concerns.

One thing which illustrates this is the response I have got on the occasions when I have lost some weight. People congratulate me and make a big deal about it. I find that upsetting. I eat quite healthily and do not have a lot of sugar. I never eat large portions. My diet is probably healthier than that of many thinner people, but the assumption is that I sit at home eating lots of ice cream!

There are people in my life who focus on my weight maybe more than they should and it is upsetting. As I said, my weight is mostly related to my essential medication so the fact I am big means that I am not letting myself go at all but instead, means that I am looking after myself by taking medication that I need to!

Attitudes around weight often upset me. We all have a body, and everyone’s body looks different. The shape of a person’s body is not a reason for judgement and being rude. Of course, there are health concerns which can relate to weight, but I think society’s fascination with body shape is often less focussed on health than as judgement and shaming people. For example, I am a chronic workaholic. I work every day and take on way too much. This can result in mental health issues, but nobody expresses judgement about this. Sometimes I get concerned responses but mostly people admire that quality in me even though it is not at all healthy. For me, issues around overwork are probably more damaging than any health concerns related to my body weight but nobody has ever congratulated me for taking a day off!!

Also, there seems to be a little more focus on big women in this space. I used to know someone who was in the military when he was younger. He told me that the soldiers would go out drinking and have a competition as to who could hook up with the fattest woman at the bar. This was some sort of male bonding thing presumably, but I was horrified by it. Fat women were seen as a sort to consolation prize in the sexual area or as an object of derision! The assumption here being that fat women must be less sexually desirable or nice looking than others. I found this practice to be highly offensive.

I gave an interview for Bent TV in Melbourne a few years ago. One of the questions was around stories in the media which were problematic. The one I picked to discuss was a story about actor Rebel Wilson in one of the kind of magazines they have at the doctor’s waiting room. In the article they briefly mentioned that Rebel had been kidnapped while holidaying in Asia. It then spent about five times more space on Rebel having lost weight! I know if I was kidnapped and someone wrote an article about me that this would be more important than me losing weight! The message this said about women and body shape was troubling. Presumably a female celebrity losing weight was way more newsworthy than them going through a terrifying ordeal!

I just wish all the judging and rudeness and assumptions would go away. I am big and bold and beautiful – not despite my body shape but because of it. I look after my health as much as I can and if that means taking meds that mean I struggle to lose weight but enable me to not live my life in the terror world of psychosis then so be it.

I actually don’t want to use my meds as a justification for my body shape. I shouldn’t have to. Like a person’s gender, ethnicity or disability condition, the reason for my bigness is an actually my own business. I don’t need people to ‘forgive me’ for being a ‘deserving’ or ‘innocent fatty’! It really makes no difference to anyone. Nobody else should have to justify their body shape either.

Me giving a TEDx talk and being beautiful!

Times change – or avoiding becoming a legacy thinker or why the ‘good old days’ weren’t necessarily good!

I am fifty-two. Most of my childhood and teen years were in the 1980s and early 1990s. This was a vastly different world. As I am an advocate, influencer and activist and those sorts of things I have a responsibility to exemplify inclusion and respect and that often means not thinking new ways of thinking are ‘wrong’ just because I didn’t grow up with them.

When I was a child one of my favourite TV shows was Fawlty Towers. My family members and me – and I suspect lots of other people – thought this show was hilarious but if I watched it now I would see it very differently. It is rife with sexism, racism and stereotypes. It is a lot more cringeworthy than it is funny! This is one example of how things change, in this case in relation to popular culture and what is considered funny.

As a member of a good number of marginalised groups, I tend to be quite inclusive and being inclusive is very important to me. I am grateful if I get something wrong and someone corrects me. I had this happen a few years ago. I published a blog post about the neurodiversity movement and quoted a well-known (and white) author who described the neurodiversity movement as ‘the civil rights movement of our time.’ I have white privilege and as such didn’t see the issue with that statement. Thankfully one of my social media family who is a Person of Colour private messaged me and explained that the statement about the civil rights movement was highly problematic as it assumed that the civil rights movement had concluded whereas in fact it continues! I was grateful for being pulled up and removed the quote from my post immediately – and thank ed the person who raised the issue!

That story illustrates the issue of empathy and being open to listen to other views when you are from a place of privilege. I would describe myself as quite inclusive and an ally but despite that I said something unhelpful and offensive simply by the virtue of my white privilege. It was an opportunity to learn.

I call where a person in a position of influence says something which demonstrates that they hold attitudes from a previous time where those views were considered acceptable but which are now problematic ‘legacy thinking’. One example of this is Temple Grandin. For some time, Temple Grandin was one of a very small number of autistic advocates in the world (and I am not sure if advocate is even the right word here but I’m not sure how else to describe her!). When Temple first started to talk about autism, she was one of a very small number of autistic people commenting on things. Many people – especially non-autistic people – saw her as the main autistic voice and often assumed her views were the views of the autistic community. A few years ago, Temple Grandin came out with what I would call some pretty significant legacy thoughts. The one which got me – as I do a lot of work around autism and employment – was when she said that ‘autistic people who are unemployed should get off their butt and get a job.’ This presumably related to Temple’s own financially privileged background where she never wanted for a job. The statement was so unhelpful. In my experience (which is also backed up with evidence as I am focussing on it for my PhD) is that autistic people who are unemployed are often very keen to find work but struggle to do so. It is more an issue of structural disadvantage, assumptions and ableism by employers than unwillingness to work from autistic people! I couldn’t work at all for 12 years due to anxiety around working and some years of being institutionalised. I would have loved to have ‘got off my butt and got a job’ but it wasn’t possible! At the time Temple Grandin made the comment on employment I was beginning my career as an advocate. I remember thinking that if I ever had that kind of approach and got that far removed from the people I was working with that I should give up!

At fifty-two I find myself needing to be aware of my own potential for legacy thinking. Turning fifty was great in a number of ways but not so much in others. I am now quite wise and I am sought out as a mentor, coach and support person. However, I find some of the thinking which has emerged in recent years challenging. For example, trigger and content warnings. My instinct with this is to think they are unhelpful and find them slightly irritating. I know this is not a good approach, so I challenge it and always use a content warning in a talk or written piece where one is called for. I know though that I have a tendency for legacy thinking there. Thinking in this area has changed but that doesn’t mean I should be threatened or ignore it because of my own reservations. It is a change in thinking across society and it is something I should do in order to respect my audiences. My parents generation get in trouble for their legacy thinking all the time, especially around disability and race. It bothers me and I definitely don’t want to be viewed in a similar way or to behave in a disrespectful way. Like all of us, I can learn and be open to learn where needed. I never wanted to be a grumpy old Yennski being threatened by recent thinking and approaches. I don’t want to be Fawlty Towers!!

I think we all need to consider these things. For older and middle-aged folks, the world was not necessarily better when we were younger – just different. Some things may have been better and others worse. For example, as a Queer person I would much rather be around now than in the 1980s! Humans seem to have a tendency to think the world was somehow better when we were young. I don’t agree with this, and I don’t agree young people now were ‘worse’ than when my generation was young.

So, Yennski says avoid the legacy thinking, be decent to everyone and learn wherever you may need to learn.

Yennski – wit 1950s hair style!!

What happens when you fear the worst and then it happens

The title of this post could refer to my life at a few points – such as going to jail or being homeless. While these happened a very long time ago the latest is maybe not as dire as those, it is dire enough.

So, 2.5 years ago I left my stable job which had sick leave and things like that and went into business by myself. I didn’t do this because I was silly – not at all. I did it to protect myself because I was being horribly bullied and gaslit at work and it was actually getting to the point where my safety was at stake. As a person with a business and no sick leave my big fear was getting unwell and not being able to work. A related worry was being unwell with psychosis for the rest of my life and getting more and more debilitated as time went on, to be alone, scared and sad and depending on services and workers for everything. Not a nice thought for anyone but for a person who spent many years trying to claw my way back from what was essentially a broken life it was horrifying.

So, for the past two and a half years I have been terrified of getting unwell and being unable to work. And about three weeks ago this worst-case scenario eventuated. I ended up in hospital with psychosis and there aren’t a lot of options around medications as I am on the last-ditch anti-psychotic, the one they give you when no others work. Prior to going on this drug I tried I think nine other meds each of which were either ineffective to start with or became so. So, I am on Clozapine and I can’t take any more without it reaching a toxic level. Ugh. I am lucid (mostly), but my perception is confused and everything looks, sounds and seems strange. I can’t listen to music with lyrics in English because the song’s lyrics talk to me – and not in a nice way! I haven’t looked in a mirror for more than a few seconds over the past three weeks as the image I look at is not me. I even have the sensation of people touching me when there is no one there. Reality seems a somewhat fragile to say the least. And given the medication issue it is quite possible that this will be my normal for the foreseeable future.

So yes, as you might imagine I am not happy about this. But I am still me and that means that if there is any hope, I will strive for it. My view of my ability to manage difficult things and achieve things others call impossible is ‘the normal rules do not apply’.

I had my PhD supervisor catch up today (which was very helpful and now I know what to do with my literature review…) and I said to my supervisor that I am determined to be Dr Yenn. Whatever my illness affects it does not seem to affect the quality or consistency of my work. This means I might be in strange place mentally but inside there is a lucid kernel of myself. This little Yenn is also responsible and insightful. So, listen to the little Yenn I suppose!

And yes, the worst – or close to it – has happened. Chances are my baseline of psychotic symptoms has changed for the worse and there is every chance I will need further hospital stays more often than I might like (i.e. ever!!) But I am Yenn and I do not give in. Also, the absolute end for me aside from death would be to be chronically unwell, unable to live independently or work. You know what? I have been there in the past and I still managed to find joy in that life. The staff here all tell me how lovely I am. I am ‘gentle’ and ‘a calming presence’. One nurse yesterday said how glad she was to have met me. Another told me that any service would want to have me as a participant.

The other thing which may not surprise you is that I am an awesome self-advocate! Even when I am very unwell, I can still get my needs met by asking, (mostly) nicely. I asked to come to this ward, I asked for the doctor I wanted, and I will ask for anything that I need from the staff. I don’t need to be overly bolshy – just firm. I suspect many people don’t even realise that advocacy is possible in mental health settings – I certainly didn’t for many years!

So, the lesson to learn for me is that even if the worst possible scenario happens it might not be insurmountably awful. And actually, I have been able to work while in hospital, both for my PhD and writing and a little paid work. All that time and effort I spent worrying was unnecessary!

I will leave with a reflection form Star Trek Voyager…. Character Seven of Nine (who as an aside is the best character in any series anywhere ever) was taken by the Borg as a child and rescued by the Voyager crew as an adult. Everyone in the Voyager crew other than Seven of Nine was terrified of being assimilated by the Borg. Seven of Nine though was ambivalent about it, presumably because she had been part of the Borg collective and managed pretty well. For Seven assimilation attracted a very different response to her crewmates. This is how I feel about the possibility fo one day needing to access residential services and have a high degree of care. I have been there before, and it didn’t kill me and I managed to find some joy in it.

The one where Yenn takes over the asylum! – or reflections on 31 years with schizoaffective disorder

I am writing this blog post from Acacia Ward in the North Canberra Hospital. I was admitted on 19 July because my anti-psychotic meds were not doing what they were meant to. It is actually a really nice ward and staff are supportive and respectful. I have been accessing such services on and off over the past 31 years.

In 1995 I was twenty-one years old. I was a recently released ex-prisoner and a drug addict with an impressive habit. In fact, my drug use became an autistic passionate interest – proof that not all autistic passions are positive. I had been excessively using illicit drugs for almost a year. I had been evicted from my rental house – well it probably should be termed a squat given we didn’t pay any rent! I ended up living in place in the country, which was a camp for school groups and scouts, was also a wildlife care centre and took in young people who were having tough time – including me. At the time pretty much every person with any level of responsibility that I met would tell me that my drug use was a bad idea, but I didn’t listen. So at age 21 as a homeless person I had my first episode of psychosis.

At the time I didn’t know whatit meant. The world became very frightening. I knew that the world was ending but nobody I talked to about this dire warning took me seriously. I had visual hallucinations and the pay phone that I used to call my parents was sending me hateful messages. Everything looked and felt wrong. Life just got more and more scary, so I took an overdose, hoping to be freed from the awful nightmare world I was living in through death. I didn’t get death, but I did get my first stay in hospital – first a medical ward and then a psychiatric hospital. And believe me when I say that psychiatric hospitals 30 years ago were very different to now!

I was diagnosed with schizophrenia, but I didn’t know what that meant – and nobody enlightened me. Over the last 30 years I have lived in mental health residential care or hospital inpatient units for around 6.5 years and prison for a further 4 years! I am currently in hospital – my first time since turning fifty a couple of years ago. I have had I think six major episodes of illness in between 1995 and now. They tend to take a while to resolve. The other thing I have which has baffled doctors in the past, is a high level of self-awareness. I didn’t always have this. It is a mixed blessing. I can be rational and lucid at the same time as being terrified by things that my self-awareness tries to dismiss! It is like I am looking at myself and saying ‘stop it!! Just Stop It!!’ but I cannot will it to go away.

Usually there is a trigger for episodes of illness. Actually, there has been every time other than this one. The difference this time is that I am on a very nifty medication called Clozapine. I suspect that because of this, that this is the most ‘well unwell’ I have ever been. My mood is pretty good, and the other symptoms are not as bad as they have been in the past. I am also much more patient and willing to take advice from the staff here and not get caught up in ward politics with my fellow guests. I spend most of my time on my laptop or reading and I am less frustrated about needing to wait for things. I can also effectively advocate for myself – as you could imagine given that much of my work is advocacy!

I never automatically conflate wisdom with age as lots of older people are not very wise! However, I think I am quite wise and especially in the mental health arena. I tell you what, after 31years a bit of wisdom around mental health is welcome!

Every time I leave hospital, I hope that I won’t return. It is dreadful when thinking about choice and control – even a nice ward like this one with inclusive and respectful staff. In the past the facilities I have accessed have almost all been horrific, especially – but not exclusively – those in the 1990s. Attitudes from staff have changed and the focus is more on recovery and inclusion and not punitive practices, paternalism and control. Despite the hospital setting being a vast improvement in recent years I still don’t really want to come back!! Knowing I have the illness I do and that I have had a lot of admissions means I am aware there may be some more hospital in my future – but let’s hope not!!

I view life as being an opportunity to do a number of things. These include

Learn and grow
Make connections with people who support you to be the best you that you can be
Leave a positive legacy
Have fun and engage with the good things in the world
Spend time doing what you love
Cuddle cats!

I strive for these and a I know having an illness doesn’t necessarily mean that I can’t engage in any or all of those things. In fact, it gives me an incentive to do so and to embrace all the joy in the world that I can. I am almost always optimistic and grateful to have had the experiences I have despite – or maybe because of – my illness.

This picture is me and Sunflower the kitty having a smooch, taken yesterday by the wonderful Lizbet when I was on leave