What’s in a name? Diversity, identity and responding to bigots

I am Yenn. However, I have not always been Yenn. For the first 44 years of my life, I had a different name – a name that I did not really like and didn’t feel like me. It never really occurred to me to change my name. Then in 2018 when I was 44, I came out as being non-binary gender. This was A Big Thing for many reasons. It went to the heart of who I am and how I see myself. One thing which came up almost instantly was my problematic name. My dead name had an ‘ette’ at the end, which in English at least is a feminine descriptor. (And in case you don’t know, a ‘dead name’ is what trans folks tend to describe the name we were given at birth and which we have since changed).

When I came out, I did some serious thinking about how to change my name but nothing I came up with worked. Eventually I decided to leave it with my subconscious to work out my new name. In February 2019 I was sitting at my desk working and a thought popped into my mind. “ooh” I thought, “Yenne.” I wrote it down and it didn’t quite work. I tried again – “Yenn”. Yup. That’s the sweet spot! I have been Yenn ever since. Initially it involved a lot of bureaucracy. I changed my name on social media, at work on my bank account, with my publishers and of course with friends and family.

One amusing thing happened the day after I worked out Yenn was my name. I was helping my friend and author colleague Graeme Simsion launch his book the Rosie Result. I had told Graeme my new name prior to the launch. He remarked that it was very funny because at the launch event he called my name, and I didn’t look around at him! And it did take a while to take it on board.

My name has a few meanings. I unpacked this almost as soon as I came upon my new ‘me’. The first is about gender of course. Yenn – in Australia at least – is not a gendered name so it is a very suitable name for an A-gender and non-binary person! It also means to yearn in old fashioned poetry, and I have spent much of my adult life on self-reflection and finally it includes some of the letters from my dead name so I can remember the past if I want to. Yenn is a perfect name for me.

People often ask me if Yenn is my ‘real’ name. Well yes, and yes. I legally changed my name 6 years ago this month on 20 May 2019. So, it is my legal name and anyway even if it wasn’t then it is the name I chose for myself and as such is valid too. It is not OK to challenge a person’s name and often relates to bigotry of one sort or another, be that transphobia, racism or Islamaphobia.

Transgender people often express that they love my name. I love it too. It is one of my favourite things about me. It also lends itself to nicknames. My faves are Yennski, Yennie, my Yennie friend and Yenns. It also lends itself to amusing use of language – such as Yenniverse, Yenniversary, Yeme, Yennify or a big Yennski Yay!! It’s a pretty cool name. It is also a core part of my brand as a small business and I’m sure it results in greater levels of engagement.

Some thoughts about names and gender

Always use a person’s preferred name. Not doing so is similar to misgendering a person (i.e. using the incorrect pronouns). This is an area where intent is very important. Intentionally doing this is rude, disrespectful and demonstrates bigotry and transphobia. However, if you do it accidentally, just apologise and try not to do it again – and don’t make a big deal of it.

Changing your name is often peart of a range of things which come under the umbrella of affirming gender. This can involve surgeries, changing pronouns, changing the way you dress, taking hormones, growing or removing facial hair and changing your name. Affirming gender can be a time of joy and discovery but it can also be very challenging and intense. Bigots may use someone’s gender affirmation as an excuse to be hateful and even violent. If you meet someone who has recently changed their name in relation to affirming gender, please keep these things in mind.

A name is a deeply personal thing. I always tell people that if they want to change their name that they can. The process is not too onerous, and, in my experience, it is far worth the effort. My life changed when I changed my name. I became more confident and positive about myself. For me it was also closely related to my gender identity. I came to my self-knowledge and my name was a core part of that. As such my attitudes around something as key to my identity as my gender and my name all sort of get together and have a pride party in my soul!

And to any bigots out there, just stop it! Transgender people – and nobody else for that matter – need or deserve to be hated and discriminated against. We have the right to acceptance and respect and support and kindness. And if you don’t like me because you are transphobic, well:

I am angry because bigotry is never OK, and we don’t deserve it
I am confused because I don’t I understand why my gender identity is anyone’s business other than my own
I am sad because I am a very loyal and kind friend with lots of insights and amusing anecdotes and you are missing out on those things
I am hopeful for you that you will change your thinking and realise that hate isn’t OK. I know this can happen because I have experienced it happen.

And I am quoting myself from a disability context here but I think it relates … ‘It is the same as with anyone else – just be decent’

Yenn at Mardi Gras in Sydney in 2019

One year on – reflecting on employment, small business and being ‘brave’

One year ago, on 10 May, I left my job of 17 years to start a whole new adventure. I am not going into the details of why I left but suffice to say I was very unhappy in my job for a number of reasons. It was doing damage to my mental health – which is usually pretty fragile without any external prompting! I made the decision to leave and it turned out to be one of the best decisions I have made – although not without some issues.

When I left, everyone at work told me I was ‘brave’ and how they wished that they could do similar things. I basically went out into business as a consultant, advocate and coach. When I started the only regular income I had was my books – usually less than $10,000 per year so not something I could live on for very long. I also have a mortgage and at around the time I left work the interest rates kept going up which made me very stressed. People told me I would be OK, but it was a scary place to be.

For the first few months I managed to land some projects which kept me going but it was all very precarious. Then in August I started regular work with a theatre company which was amazing. I was hired as an accessibility and inclusion officer for one of their awesome projects and then a few months later I was asked to manage another project for them. My dad always tells me how much he loves me working in theatre. I am not actually a theatre professional, but I am an experienced accessibility consultant and project manager. I really love this role and hope I can work there for a long time to come.

After that, I was getting regular income, but I wanted more – mostly to address my anxiety around income! In January of this year, I applied for six part time jobs. I got interviews for four, was found suitable of three and got my most amazing job in the world – as one of two Deputy CEOs with a Disability organisation who I have worked with over the years. Not only is this regular income it is basically the best job ever. I get paid for making a difference and changing the world doing work which closely aligns with my world view and approach to life. I think I may have died and gone to work heaven!

The only issue for me with all of this is the uncertainty. Most of my jobs are for a few hours a month and are casual or once-off roles. Some of my jobs are dependent on timings and external things, like access to funding. I am autistic which – for me at least – means uncertainty is not really my friend. So, in order to not spend all my days stressing about where the income is coming from, I have needed to build strategies to address that anxiety. I have definitely not perfected this yet, but it is improving.

One of my non-autistic friends who has a business said to me that it took them three years before they stopped worrying about where the money was coming from, so I try and keep that in mind when I start to worry. I am aware that new business will usually fail in the first two years if they fail so I am exactly halfway there…. And so far, so good!

I am actually co-directing a research project with Latrobe Uni looking at autism and entrepreneurship which is very interesting. I have been interviewing autistic business owners about a range of things, mostly focused on their wellbeing. I think I should interview myself! That is one of my other roles – that of an academic. I am working for two different universities on different things which is cool. …And if you are an autistic entrepreneur and would like to be interviewed for the research then please get in touch 

When I left my job last year, I had anxiety that nobody else would employ me. This has not been the case. If anything, I have discovered that I am immensely employable. Apparently writing 18 books, giving two TEDx talks and being on a bunch of boards and committees, receiving awards and having work experience in a range of roles impresses hiring managers! Why knew?? And the things I have done in the past year have if anything increased my level of employability. Despite this I periodically get filled with anxiety and thinking what if NOBODY wants to employ me and I will have to sell my house and move in with my parents! Thankfully this concern seems to decreases with passing time.

In 2007 I moved to Canberra for work. I was in receipt of the disability support pension at the time and had been for the preceding twelve years. My world changed in a big way. For many years my high levels of perfectionism and anxiety meant I couldn’t do any paid work at all. Now, less then 20 years later I probably have more work than I need! And I utterly love it. I often find myself sitting at my laptop thinking that I could keep going all night! (Don’t worry – I don’t go all night!)

I know I made the right choice a year ago. I followed my heart and ended up with some amazing things to pass my time. The people work with like and value me and my good work and I spend my time changing the world. Lovely.

Yenn’s first book and their lizard tongue – How unexpected experiences can influence change

On this day precisely twenty years ago I was an anxious Yennski…. Well, that wasn’t exclusive to my thirty-year-old self, but it was a particular kind of anxiety. I guess it was ‘good’ anxiety. What was I worried about? I had just sent my first book – or what would become such – to my mentor Polly’s publisher, Jessica Kingsley Publishers. The book was my life story up until then. It was the story of an autistic person brought up in non-conventional religion, who became a communist, a criminal and an artist. A person who at the time they wrote the book had overcome drug addition, been a prisoner and an inhabitant of many mental health programs. A person who had been misdiagnosed and all that went with that, a person who had a mix of optimism and positivity combined with self-doubt and impostor syndrome. This little Yennski person had no idea what path this book would take them on.

When I sent it off, I actually doubted that anyone would want to publish my book, but they did. And thus began my twenty-year relationship with my publisher. They have printed a further 12 Yennski books and a number that I have provided a chapter for. I love to write. I mean of course I do – I have two blog sites with 700 or so posts in them. I even have a book of my blog posts in it with Lived Places Publishing! Writing has always been something I enjoy and which gives me meaning. I am that oh so common thing that is the creative autistic person. We are everywhere!! And I make art as well 

My first book did more than make me happy and fulfilled. It completely changed my view of myself and where I felt that I fitted in the world. Just after it was published, I was asked to be interviewed on BBC UK radio’s Women’s Hour. I was living in public housing, so I had the odd situation of being picked up by a chauffeured car from the BBC from my public housing estate. I imagine that was probably the first time the driver had picked up someone for an interview from where I lived, and I am certain I was the only published author from my estate at the time – although there may have been others since. It never pays to assume about a person’s capability or achievements based solely on their address or even their criminal history. I mean look at Jean Genet – a homeless criminal and one of my favourite authors ever – and I guess look at me too!

There are a few things in my life which seem destined buy a positive force – be that God or whatever it might be. I don’t know about theology but I do reflect on those kinds of things. Some events and situations have conspired to change my life and my view of myself. One was the first book – of meeting Polly when I did and us becoming friends and her significant positive influence in my life. Another one might seem odd, but I still see it as being something which had it not occurred, I would not have taken the path in life that I have. This thing happened in 2000. I was a very recently released ex-prisoner, and I was living in a residential service for people with borderline personality disorder. I am fairly certain I do not have this actual condition, but it is a common misdiagnosis for autistic people. When I was in prison I was medicated to a huge level. The chemical straitjacket they call it – keeping people so medicated they don’t fight back or make trouble. It was definitely a strategy favoured by prison authorities! One of these medications gave me a movement disorder called tardive dyskinesia. This meant I would involuntarily poke out my tongue like a lizard as I spoke. I was mortified by this and felt I couldn’t participate in anything social – like work or study – with this happening. The doctor at the service I was staying in sent me to a movement disorder specialist doctor and they changed my medication, and it stopped. Sounds simple but I later learned that most people with that movement disorder never recover from it. It is permanent. Had that been the case I imagine that I wouldn’t have enrolled in university. My life would have been limited by my self-consciousness and I probably would never have set out on the journey that I did.

I think there are a lot of things like that in life – not just my life though. Hindsight and reflection are the best teachers. My friend and new manager talk about ‘tree rings’ of experience. We do something and learn from the experience, adding to our ‘tree.’ Rather than thinking of making the wrong or right choice or making mistakes, we see choices and what they result in as opportunities for growth and understanding. I like this approach. I think if I see failing or making a mistake as a means of building wisdom and understanding – well let’s just say I must be pretty experienced!!

Back to my first book and the past twenty years… I became an advocate, an influencer of sorts and an expert (I hate that word but grudgingly admit that I probably am one). I use my experience to support my understanding of others, and particularly my work in the advocacy space. I never had – and probably will never have – the high profile of some other autistic people. I used to want to – until I realised that the more followers you have the more trolls you have!! There is a lot to be said of being a quieter voice. I love my life now and when I think about it, most of the life I have now I owe to my first book and the amazing mentor who supported me to write it. Polly is no longer with us sadly but her legacy lives on in myself and her many other proteges. On reflection my ‘tree’ has many rings and each of them illustrates experience – be that difficult, traumatic, enlightening or transcendent experience.

I think this little person has made a LOT of decisions between thne and now (and yes it is Yenn)

What is anger? I actually don’t know!

CW: bullying

I recently did some personality, mental health and executive functioning assessments with my lovely art therapist. Among other things, these identified that I don’t really ‘do’ anger. This was not a surprise. I have never done anger. It is an emotion that I don’t really experience. I don’t think I know anyone else who doesn’t feel or express anger. It is one of those little quirks that make me Yennski!

I guess it sounds good not to be angry and in a number of ways it is. I don’t hold grudges and you will never find me engaging in a vendetta! However, anger does serve a purpose. When I was a child and teenager I experienced pretty significant bullying at school. I was the least liked child in the place and definitely the most hated – an ‘honour’ I shared with a fellow student who was gay and possibly autistic (I avoid retrospectively diagnosing folks as I am not a diagnostician, and my reflections from 35 years ago probably don’t count as a very accurate diagnosis anyway!)

School was trauma heaped on misery but not once did I get angry. I just took on board all the hate and bigotry and I guess I was sad and stressed but never angry. It didn’t occur to me that the bullies were in the wrong or that I could retaliate. I just accepted their judgement which I suspect contributed to the rejection sensitivity, low self-esteem and impostor syndrome that I experience now, almost 40 years later. In this situation a bit of anger and blame against my tormentors would probably have been more helpful than turning it all in on myself! The appropriate response – or one appropriate response I guess – to this kind of abuse is anger and wanting to hold the perpetrators to account.

Between the ages of 15 and 20 I was a socialist. Socialists were all about anger – anger at the system, at the billionaires and warmongers and pretty much everyone that wasn’t a ‘worker’ or student – and even then not all of the members of those groups!! I was fine with the attitudes and beliefs around the system being to blame for a lot of mystery and exploitation and discrimination, but I never felt angry about it! I remember thinking I must be a deficient sort of socialist to have no anger. I mean our party logo was a red fist on a white background – symbolic of using violent revolution to overthrow the rotten system and replace it with something nicer – and if that imagery didn’t portray anger I am unsure what does!

More recently I experienced bullying in a job which was so bad that I had to leave the job to protect my safety and mental health. I was never angry with the bullies – just sad and disappointed and very stressed. I am still not angry with those bullies – in fact I thank them because my employment life now is so much nicer than it was then plus I am earning more money than I did so the joke is on those managers!

I don’t know if I miss anger. I have bever really had it which makes it difficult to miss. I used to think I was deficient by not being angry at things which apparently should engender anger. I don’t feel angry or blaming against criminals – even those who commit horrible crimes. I don’t even feel anger at awful governments and politicians and I don’t feel angry about injustice – despite the fact I have spent over half of my adult life fighting against ableism, transphobia and other bigotry. I feel very strongly about justice and inclusion it is just that part of those strong feelings is not anger. I can’t really be a disability advocate and blame myself for something which I imagine is almost certainly related to my disability! So, I guess this is what I get. I am OK with it, and I now know it isn’t a failing and I am not a sociopath with no feelings – I just have different feelings to others and that is OK too.

Has anyone seen my emotions? All about alexithymia

I had an appointment with my art therapist yesterday. We had recently done some psychological and personality questionnaires – I love that kind of thing! One of the biggest things to come out was my issue around connecting with my emotions. After I recounted a story about abuse against me in the past, the therapist asked if I felt emotional talking about it. I honestly did not. I am often taken to task around my propensity to talk about dark, negative or triggering things. I actually don’t understand what being triggered feels like. It is not a thing that happens for me. Of course as a public figure this lack of knowing the impact on others of my stories about difficult experiences can be a challenge! I often figure it out only after someone tells me after something I say upsets them, which is far from ideal!

When I think about it, the only emotions I am aware of ever experiencing are anxiety, fear, depression on occasion, a little bit of shame sometimes and even less frequently happiness. My usual emotional state is feeling nothing at all! Emotions are evidently not for me!

I suspect I actually have all the same emotions that everyone else does but that they are dampened by alexithymia (also known as emotional blindness). Alexithymia means I can’t articulate or be aware of emotions rather than having none. I rarely cry and I rarely feel sad or angry as a result of poor treatment by others – although I am susceptible to be bullying and it makes me stressed and filled with shame – it just takes me a long time to figure out what is happening in that situation!

Lots of other autistic people have alexithymia too. It can mean people view us as not having emotions or that we are cold and detached. I don’t think it is that. I have very good empathy (I think!), but it is on a thinking level rather than a feeling one. I can empathise with people but not have any conscious emotions about the situation, but I still care. In fact, one of the other findings from the psychological testing was that I am very kind and thoughtful. It’s just I’m not going to cry if something bad happens – I will reflect on it and feel sad on a thinking level instead of an emotional one.

I think I have a lot of emotions going on below the surface so to speak. I remember many years ago having a book launch for one of my large collections of Yennski books. There are photos of me signing books and looking absolutely delighted. Three days after those photos were taken, I went to hospital for severe depression, and I was there for six weeks! It wasn’t that I wasn’t experiencing the depression emotions, more that I was unaware of them, enabling me to be completely depressed without being aware of it until it was at a very elevated level.

Another thing I have some issues around is love. I have never felt love in the way society says you are ‘supposed to’ experience it. I do experience love but once again, it is more of a thinking love than a feeling one. I usually find when I experience an emotion it is negative, so I am happier when I feel nothing. I don’t miss my emotions because it is so rare that I am aware of them (apart from anxiety which I often feel). My baseline state is being on an even sort of level. For me anxiety is a big worry because in the past every time my schizophrenia has given me a major hard time it was proceeded by high anxiety. So, when I start to get anxious, and it doesn’t go away after a few days I worry that my illness will play up and put me out of action for several months and I will descend into terror and confusion and spend months in hospital – never fun!

I don’t feel wish to have more connection to my emotions. I am fifty now and this has always been my life, so I don’t know anything different. Alexithymia is as valid an emotional state as people who feel things all the time – it is just a bit different. I am not at all cold-hearted and detached, I just have a different way of experiencing feelings. And if you meet another person and they seem emotionally disengaged it might just be because they have alexithymia too!

Activism and advocacy, self-perception and ‘bolshy’ Disabled women

I am an Autistic and ADHD, non-binary, Asexual activist and advocate who belongs a bunch of other intersectional ‘boxes.’

I find myself reflecting on how I imagine others might see me as a person and as an activist. I am out loud and proud about all my identities. I have a lot of strong opinions and am not afraid to express them. I am extroverted and a ‘big’ person. I consider myself a bit of an alpha human. I am – in some areas – highly confident in my capability. And I get accused of being difficult, rude, blunt, bolshy, a pain and being too ‘woke’. I often wonder if I was a cigs gender, white, straight, non-Disabled man if I would be described like that when I raised an issue at work – or wherever?

People, and especially people that don’t know a lot about transgender experience and identities – assume that I am a woman. There are all these expectations of what women are ‘supposed’ to do, how they are supposed to look. The idea that women are somehow lesser citizens is still around, albeit oftne expressed in more subtle terms than in the past. The other issue is criticisms of ‘political correctness’ and ‘wokeness’. These things are often seen as a problem. I always say why do people have a problem with respecting others. Because the concept of ‘woke’ to my mind means including, accepting and respecting people from different groups. I fail to see how that is a bad thing!

I remember giving an autism talk in a country town some years ago. The organiser of the event was quite problematic in terms of their disability politics – they even asked me what I planned to wear to my talk! (And I was very tempted to say ‘well as I love the beauty of the human form, I will be naked…’) When I finished my talk this woman asked me a question about ‘what would you do about all these politically correct autistic activists?’ To which I responded that these activists were my friends so I would most likely support them and also that attacking ‘political correctness’, to my mind, was essentially attacking being respectful and who would want to intentionally do that?

I am happy to be ‘bolshy’ because we live in an often hateful and horrible world where people like me – and those from other groups – face discrimination, bigotry, trolling and hate and this is Not OK! If by standing up for human rights and inclusion I am being bolshy and difficult, well I will gladly be bolshy and difficult!

Perspective is such a factor in this discussion. I remember being in a conference audience a while back. The conference was around autism and supporting autistic kids. I went to a session and the presenter – who I am pretty certain was not autistic – said a child they worked with was ‘resistant to using the telephone’. I remember wondering if a non-autistic child’s dislike of phones would be described with such pathologising language as the autistic kid’s was? I imagine a non-autistic child would have been described as ‘not liking to use the phone’ – which has a completely different emphasis!

We are now living in a world where being bolshy is definitely not a bad thing and it is actually necessary. The world we live in now is so full of bigotry, transphobia, racism and ableism that we need to stand up for all that is good and inclusive. Don’t be deterred by the assumptions. We need to defend human rights and at this point in time challenging all the hate is essential. The adage ‘evil triumphs when good people do nothing’ is relevant here I think. I keep this with me in my work and aim to challenge the hate with kindness, empowerment and resepct.

Assumptions are everywhere in this space. I never got the metaphorical email about how Disabled women and gender divergent folks are ‘supposed’ to act – yay to not getting that email because the expectations around how we are ‘supposed’ to behave do not tally with how I want to live my life. If I see prejudice, ableism, bias or hatred I will challenge it as much as I can. I don’t care if that makes me look ‘difficult’ or ‘bolshy.’ In fact, at this point in my life I have stopped giving a crap about what negative people think a lot of the time and I don’t really mind if someone thinks I am being ‘difficult’. Disabled women and gender divergent folks need to (metaphorically) stand up now more than ever. Bring on the bolshy and prepare for me to be difficult I say!

25 years on – or the other thing that nobody believes about me

Last week I was advised that my working with Children Check in Victoria had been approved. For most people this would be a formality and not cause for anxiety or stress but not me. What\ever I apply for these sorts of things – and as a former career public servant this has occurred quite frequently – I am filled with dread, self-doubt and judgement and blame. Why? Well, the Yennski police history has more things on it than it should (as more than zero!) Between 1994 and 1999 I was a criminal. A real one involving lot of prison and whatnot. There are tow things people don’t believe about me – my age and my criminal history. I can absolutely guarantee that I am fifty and when I was 20-25 I was involved in criminal activities. I have a book about it! (the criminal activities not the age. I don’t think anyone would buy a book about my age!)

I am certainly not proud of this part of my life. My last conviction was in September 1999, and I have not so much as jaywalked since then. In 1999 I turned 25. I had seen a lot nastier stuff in my youth than most people my age. I got involved in drugs and crime due to a partner who was older than me and very dangerous. By the time I worked out just HOW dangerous I knew I was in too deep and knew his plans and feared for my safety should I leave, so I went along with him. I was arrested with him for a robbery and spent six months in jail. After I was released, I was so damaged and traumatised. I had spent six months as an autistic prisoner, trying to work out what criminals expected – and particularly what made them angry! I masked at an Oscar-winning level and the whole situation resulted in me feeling the need to self-medicate with various drugs.

The drug use was pretty intense and after less than a year I was very unwell with what would shortly be diagnosed as schizophrenia. I have the same diagnosis 30 years later and have taken some pretty brutal medications for that entire 30 years and will probably take them for the rest of my life. I spent the next four years in and out of institutions – prisons and hospital – and my life was unliveable. In 1999 things had started to shift in my mind. I decided that a new millennium should equal a new life for me. When I was released in February 2000, I had worked out that I didn’t want an institutional life anymore and that things needed to change,

In 2001 I was living in mental health residential care. I. lived in a very nice suburb and saw people down the street who clearly had very good jobs. I realised that maybe I could one day have a job and a mortgage and a suit! Within eight years I had all those things. Yup, go Yennski!!

I try to remember my early life when I meet people who are struggling with their own. I have gone from being a desperate prisoner with no money, no job and no education – and for a while no home – to being a ridiculous over-achiever with a mortgage, lots of art, qualifications, a good work history – and a very good cat! Yesterday I was in Civic and there was an older person using a walker with a very skinny dog. I am pretty sure they were homeless. I regret to say that I tried to keep my distance but then the person called out that they liked my tattoos. So, I ended up having a lovely conversation with them and met their dog – whose name was Honey (‘honey by name honey by nature’ apparently).

While it is really easy to judge and assume, especially with people who look a bit ‘iffy.’ But even people who are ‘iffy’ are deserving of respect and kindness. And maybe that ‘iffy’ person – the prisoner the addict, the homeless person – is not deserving of judgement and assumptions but instead for kindness, love and support. Those attributes demonstrated by people in my own life were the main reason I am where I am now – and that I am even around at all! I don’t mean that all people involved in the criminal justice system or who are homeless or dependent on drugs should write a bunch of books and give two TEDx talks and win awards of course! What I mean is that how we treat people – our judgements and assumptions as well as our kindness and inclusion – can make a big difference in their lives. In my life the main people doing the loving and kindness were my parents. Anyone who knows my parents knows that they are the best and they saved my life – or enabled me to save my own life anyway!

I am grateful for the support I have received, and I am also grateful for my ability to let go of blame and that I try to avoid doing a lot of judging and assuming – about others or myself. So, 25 years ago my life was very different indeed and now I have mostly a very good and satisfying life. Big Yennski yay to that! And if my twenty-something self met me now, well I suspect that would be rather surprised!! Although actually they would probably ask me for money!

Schizophrenia and me – why I embrace my ‘other’ diagnosis

On this day thirty years ago, I can tell you what I was doing and pretty accurately. I was a very recently released ex-prisoner – long story! (refer to my autobiography for more details – Finding a different kind of normal) I was staying with friends who were not criminals. I was utterly miserable and took comfort in my best friend at the time – cannabis! This friend had a few ‘cousins’ that I was also friendly with – amphetamines and LSD! Shortly after this day in 1995 my housemate’s asked me to leave as they were worried I would attract police attention due to my drug use. It took a while to find a new home – amazingly most share house tenants looking for a new housemate didn’t want a drug addled ex prisoner! Who knew?? I ended up in a boarding house. It was one of the loneliest times of my life. Shortly after that I moved in with my drug dealer – I know hey, how could that possibly go wrong??

I was traumatised by my recent six month stay at her majesty’s hotel and managed my troubles through becoming a person described by peers as ‘the most prolific and generous dope smoker in Melbourne’. Now a lot of people have periods of their life where they manage issues through self-medicating with drugs. I think the majority of these people probably come out the other side and get on with their life. However some drug users – like 21 year old Yennski – have a genetic makeup which results in drug use triggering psychosis. For many of these people – in this case a group which does NOT include me – have one episode of psychosis and never have another one. Sadly, for me I have an illness thirty years after this started. I need to be constantly vigilant around looking after my mental health. I have been taking heavy duty medication since 1995 – more about that soon.

I was diagnosed with schizophrenia shortly after the episode in the druggie house – and we all got evicted from the druggie house, so I spent some time homeless. I had not understood of what my illness involved. I was advising by pretty much everyone in my life to stop doing drugs but sadly it wasn’t that easy and it took me another ten years to completely stop using drugs.

My illness is not my friend. It frightens me and threatens my welfare and sometimes even my life. I have spent around three years of my life in hospitals and a further three years in mental health residential services and a further four years in prison. I remember going to court for crimes and my lovely lawyer – the awesome Vince – showing the magistrate photos of my artwork and telling them that I was a former art student. The magistrate on every one of these occasions would say how sad they were that there was no appropriate place for me and that jail was the only available option.

So, I have spent 20 per cent of my life in institutional care (and I used that term lightly!) These days my life is very different. I still have my illness, and I still take medication every day, but I am also in place where I am considered ‘successful’ and an overachiever.

I take a medication called Clozapine. This medication is pretty much the last line of defence for treatment-resistant schizophrenia. I avoided going on it for many years because in many ways it is a scary medication. There are some side effects from clozapine which are life threatening. There is a high level of maintenance for this drug to ensure those side effects don’t occur – monthly blood tests, annual echocardiograms and biannual ECGs. I have now been on Clozapine for just over five years. When I started taking it, I was in hospital. It has to be closely monitored for 18 weeks after commencing treatment so almost people start taking it in hospital and I was in hospital anyway! I would look at the pills in my hand and say ‘please be my friend little Clozapines’. And five years later I can say that those little Clozapines have become a very good friend. I have not been psychotic since them – an amazing achievement. They also help with sleep and anxiety so extra yay to that! I actually regret not going on Clozapine earlier.

I have been told that there are three different experiences of schizophrenia I terms of episodes of illness– one where you have one episode of psychosis and that is all, the other is where you have periodic episodes of psychosis, but it is mostly controlled with meds and lifestyle and the third where someone is unwell all the time. I am sad that mine wasn’t the first option but very relieved I am not the third one!

People often don’t believe my diagnosis when I am well. I certainly don’t fit the stereotype – although who does? Stereotypes are pretty unhelpful! I am a bit of an anomaly though. In terms of achievements, I am impressive regardless of any psychosocial issues. People can be really ableist and unhelpful around schizophrenia though. People often don’t disclose at work. When I was s public servant, I had a number of people tell me very quietly when nobody else was around that they had schizophrenia or bipolar but ‘please don’t tell anyone’. I had a young woman in a residential care place I was at tell me she had just been diagnosed with schizophrenia and asked me what it meant in terms of her future. I told her it didn’t really need to mean anything in terms of things like her capability to engage in work or study and that I had done both and done them well. There is so much negative messaging and assumptions around this illness and I would love to smash these so to speak!

My ‘other’ diagnosis is part of me just like my Autism and ADHD identities. The stigma and bias around schizophrenia is significant. ‘Psychosis’ is so frequently used incorrectly to describe violence and representation in media usually has characters with schizophrenia as being dangerous at worst and burdens on society at best. I think we have a long way to go in terms of understanding and inclusion. I for one am out loud and proud as a person with schizophrenia. I work and live independently and pay a mortgage. No that those things necessarily denote life success, but I find them fulfilling and they are in contradiction of the stereotype. Yup I will keep trying to challenge those sorts of assumptions and stereotypes as I think they stop people from being willing to share their experience and feel good about themselves.

This is a drawing i made in hospital in 2019. Unwell Yennski tends to be very creative!

Loneliness and Yenn – with a nod to Star Trek Voyager and Seven of Nine

My favourite character in any drama or movie is one of the characters in Star Trek Voyager – a former Borg drone freed form the Borg collective who joins the crew of Voyager called Seven of Nine. For those who don’t share my enthusiasm for all things Trekkie, the Borg are a hostile, cybernetic alien species who go around assimilating people to their collective. They have assimilated thousands of species. The Borg is a hive consciousness, in which billions of drones communicate with one another. A Borg drone is never alone. They have the voices of the collective with them all the time. Oddly enough I often feel like I wouldn’t mind being assimilated by the Borg – I would have the collective knowledge of thousands of species, constant companionship and I would never be alone! For Seven of Nine being separated from her fellow drones was a difficult transition and she complained of loneliness a lot.

When I was younger, I was a bit like Seven of Nine myself. I felt completely alone. I did have friends and family, but few actually ‘got’ me, and my friends often got sick of me and didn’t want to spend time with me any more. I was extremely lonely. I remember in 1992 I was sharing a house with a student, and she moved out leaving me in three-bedroom house by myself. I remember sitting by the phone willing it to ring and free me from being alone! I think at that time I only had two friends that I could talk to and one of them was in the process of distancing themselves from me.

Even when I had friends as a young person the friendships were very one sided and people seemed to get sick of my apparent oddness. I felt like I was an alien on a different planet. This continued for a long time. A bit like Seven of Nine with being separated from the Borg hive mind I found myself in my own hive mind between 1994-1999 – that being prison. It is hard to be lonely in prison. There are lots of people everywhere in prison – fellow inmates, officers, medical staff, programs staff etc. Whenever I was released from jail I would be gripped with overwhelming loneliness. One time I was in a boarding house where I didn’t know anyone. I was in this tiny room by myself. The mental health crisis team would visit with my medication every night and would want them to have a conversation, but they were busy and would leave straight away. I actually longed for jail and the social company it involved.

Form 2000 I stopped doing anything unpleasant and decided to become a law-abiding and upstanding little Yennski. Loneliness was still an issue. In a service for people with mental health issues that I went to directly after prison in 2000, about halfway through the therapy program I was asked to move into a flat by myself after having been in a group home. I had not been alone at that point for several years and I we s terrified. However, I actually did really well and since then I have almost exclusively lived alone, with the exception of a shared house arrangement for a year or so when I moved to Canberra for work in 2007.

In my travels I learned something about loneliness. Boredom is probably the strongest factor driving feelings of loneliness – for me at least. If I have things to do then I am too busy to be lonely. This was a great discovery. The other thing is cats – once again, for me at least. Having a cat can be amazing company and I definitely prefer having a feline house mate than a human one! The other things which helped me was liking and valuing myself. Another thing is assertiveness and boundary setting. When I was younger, I was so desperate for company that I would spend time with anyone – even those who were harmful to me – to avoid loneliness. Now I am a lot more discerning about the company that I choose. In fact, I rarely need to do much boundary setting or address issues with toxic people – I think the level of self-confidence and pride in who I am somehow emanates from me putting off people who might have preyed upon me in the past! Not that predatory behaviour is ever the fault of the victim – more an observation from my own experience.

So, from longing for the phone to ring and seeking the company of anyone at all regardless of their level of toxicity, I am now pretty happy with my own company. Well, my company and Sunflower the kitty’s company I suppose. While in the past I could not have comfortably lived alone even for a few days, now I would struggle to live with others. And what happened to Seven of Nine in Voyager? Like a good Borg, she ‘adapted’ and came to embrace her humanity and individuality and stopped wanting to return to the collective. I guess you can see why I love Seven as much as I do! I also learned that she is something of a lesbian icon – gotta love that as well! I am not sure if I am an icon for anyone… but icon or not, I am pretty happy with the friends and family I have and comfortable with my own company. Had you told me this would happen when I was younger? I would have been quite surprised – hopefully pleased but definitely surprised!

Don’t tell me what I can’t do! – The impact of deficits thinking and disability

For many years I thought I couldn’t manage staff. The reason for this was a housemate I had telling me I could be public servant but I couldn’t manage staff because I am autistic, and autistic people can’t manage staff – apparently! I took this on board and cultivated a lot of internalised ableism around why I must be an absolutely horrible manager due to my autism. Yup, some advocate, I know!! I would never say or think that about other autistic people but when it came to myself, I went along with the assumptions and stereotypes around autism and management. This was over 15 years ago, and it is only very recently that I have realised I am a very good manager of staff! I would avoid going for jobs which involved managing staff thinking I couldn’t do them. I have learned that I am actually a very empathic, respectful, available and effective manager of staff. Feedback on my performance from staff I have managed was overwhelmingly positive. I can have difficult conversations and be supportive. I have also been a harassment contact officer in a government department which involved a lot of people management skills, and I was so good at that I was asked to be one of the two program coordinators for the harassment contact officers! These are not attributes indicative of a poor manager of staff, autistic or otherwise.

This example demonstrates the issue of deficits thinking and stereotypes and assumptions around disability. We get told what we can and can’t do and it mixes around in our brains and becomes a self-fulfilling prophecy. It is based very firmly in ableism and doesn’t help anyone, least of all the person with disability. This issue is everywhere and strengthens a lot of unhelpful thinking around disability. It ties in with a number of related issues – infantilisation, inspiration porn and internalised ableism to name a few. This thinking is entrenched and can hold us back from engaging in life and achieving our potential – whatever it may be.

Many people are debilitated not so much by their disability but by this deficit thinking and attitudes. A catalyst in my life which drove me to my career of activism and advocacy was meeting an autistic young person for whom much of the dialogue around their capability was based in deficits thinking a doubting his capability. When I told this person about my work in the public service and that I had written a book, and I was autistic he responded by telling me that I was lying as it was impossible for an autistic person to write books or work in administration! Not only was a I am bit affronted that my life and a career were apparently a lie, but I was also more worried that this person inhabited a world where these things probably were impossible. At this moment I realised that I needed to make a difference and support autistic people to be proud of why they are and to support them to navigate life in whatever domain they like. It is also important to be aware that if someone can’t work or study that doesn’t mean they are deficient. Everyone has different capabilities and things like the capability to work should not be a matter of judgement about someone’s worth.

Deficits rethinking holds people back from navigating life. It impacts on self-confidence and self-esteem. In the example around staff management in my experience it has resulted in me avoiding going for jobs due to my concerns around my management capability when in fact I am a good manager.

These attitudes of deficits thinking and making unhelpful assumptions around the capability of Disabled people don’t help anyone and can drive negative outcomes. I remember being at an event at Parliament House a few years ago. I was there with some of the senior staff at the Autism Cooperative Research Centre. I got into a conversation with a senior executive at one of the major banks. I thought we had a pretty good conversation until she turned away from me and said to the CRC Chair well within my earshot ‘Oh she is very articulate, isn’t she?’ meaning me! I was horrified. What would I be if not articulate? I have a master’s degree and have written 18 books! These ableist attitudes are everywhere. Seeing Disabled people as being somehow less capable and requiring condescension. It is very frustrating and not OK on any level! I often wonder how it could work if I reversed it a paternalized the non-Disabled person? Actually, I should probably do that!!

We need to avoid stereotypes and assumptions around people’s capability based on Disability. I am not going say ‘we have superpowers…’ because to my mind that also feeds into paternalism and inspiration porn. I think we should take people as they are and avoid judgements around capability and definitely avoid deficits thinking. I do have a bunch of deficits but so does everyone else – Disabled and not. I also have a bunch of strengths- as does everyone else – Disabled and not!