Reflection on 2025

I know most people that write Christmas or end of year notes do so to a seklect number of friends ad family – and my social media family is quite a large group of people, but I thought it would be nice to share my reflection as I consider my social media family to be part of my family!

I am currently staying with my lovely Purkis family, you know, the family that I am biologically connected to rather than those who follow me online!  I was talking to my parents and saying 2025 had been one of my most eventful years ever! Thankfully that was mostly for positive and edifying reasons than dire ones!

This year has been my first full year out of the Australian Public Service. When I left and went into business in early 2024, I was unsure if I was making horrible mistake! In fact, I was not. In hindsight I am much happier – and wealthier – as a small business and part-time employee than I was as a bureaucrat!

I started one regular / salaried job this year – as a deputy CEO with the Disability Leadership Institute. This was a fantastic job. The DLI – if you have not come across it yet – is a great organisation which promotes and drives leadership for Disabled people. If you identify as a Disabled person who has an interest in leadership I would recommend membership. I absolutely loved working at the DLI but did need to leave that role recently…. More on the reason for that later! I also finished up at my job at Rebus Theatre which was a job that I also really loved.

I have a couple of wonderful NDIS clients who I do peer mentoring with and will hopefully get to keep working with into the future. I love that role and hopefully I am making a difference and empowering people.

I think I gave 28 talks in 2025 – not the most for a year but definitely up there! I am writing two more books with the awesome Tanya Masterman and also working on some kid’s picture books with another friend. These don’t have a contract yet, so fingers crossed for that!

I have been doing a bunch of academic work too. I have a research project that I am codesigning at Latrobe Uni. It is all about autism, entrepreneurship and wellbeing. We are getting right into it now. I also do an advisory group with Latrobe and some work with the University of Wollongong including casual marking and running my autism in adulthood course… which brings me to the most exciting news I have had in a long time. Next year I will be commencing my first year of a PhD at the University of Wollongong. I have been granted a full scholarship so I will be paid to study – tax free! Very large Yennski yay to all of this! I am very excited. My project will be around autism and employment – so look out when it comes time to collect the data as I will be reaching out to people who might want to participant in my research! I am delighted that the University is so confident that my research will be so wonderful that they want to pay me lots of money to do it! It is a big change and a big adventure. Dr Yennski here we come! This is the reason I left the DLI. Sadly there is a limited number of hours that even I can work!

On a more personal level, Yennski HQ continues to make the happy. There is so much art now that I am having to move things around on the walls to make everything fit! Sunflower the cat is – of course – the best cat in recorded history (yup, I’m slightly biased!). She really is a gentle soul and a great support. She loves to ‘help’ when I work and follows me wherever I go. She is in the cat hotel (boarding) for the next week while I am away.

And a recent cool thing is my latest tattoo. It is a rainbow butterfly with a semicolon for a body. There is significance to all that – the butterfly is a symbol of transition, the rainbow colours are for LGBTQIA+ Pride, and the semicolon is my saying ‘I will keep going regardless of how tough things get’. I love it a lot and am now trying to find all my clothes that allow me to display it!

And finally – and something probably missing from most Christmas letters – in some respects this year has been hard. My anxiety has dealt me a lot of blows. I have spent a lot of time worrying and second guessing my decisions. I have been highly anxious and had to seek support. This is my life. I think this will probably always be my life. I know I am accomplished and have a bunch of things others are impressed by but there is a cost. The good thing out of this is that my schizophrenia medication that I am now on is very effective. In the past high levels of anxiety over a prolonged period would always result in psychosis, meaning lots of hospital stays and me putting my life on hold for at least a year to recover. This is not currently part of my life. I now don’t get terrified about my anxiety turning into psychosis which is wonderful. I see anxiety as just an unpleasant experience which will hopefully pass – that’s it. So, all things considered I am probably OK. I have certainly done a lot of learning and growing this year and will no doubt continue to do so.

I have also got to this point where I say, ‘I’m 51 and I don’t give a crap’. What I mean by this is that if someone doesn’t like me or says something rude, I tend to just let it go. It is quite liberating I must say!  

Anyway, that is a lot of Yennski! On a non-me note, I hope you have a great Christmas if you celebrate it and a wonderful Thursday if you don’t! The holidays can be stressful and unpleasant there are a lot of expectations floating around that don’t really help anyone. If you don’t want to celebrate don’t! I spent some years not doing traditional Christmas as that was where I was at and now, I am OK with doing it. As with everything, ‘do what works’.

So merry Christmas, happy holidays and happy Festivus to all! Let’s see what 2026 brings in the land of Yennski and Sunflower and also in your respective worlds…

What to do if your working memory doesn’t work!

Working memory forms part of a number of elements of something called  executive functioning. Executive functioning relates to all those enabling-type parts of our brain that allow us to manage our lives. Autistic, ADHD and AuDHD folks often have challenges around executive functioning. I am definitely among them!

AI tells me that:
Executive function is a set of mental skills, like a brain’s CEO, that help you plan, organize, manage tasks, control impulses, and adapt to new situations by managing your thoughts, emotions, and actions to reach goals

I think that sums it up succinctly. Thanks AI!

Within the umbrella of executive functioning, is the specific capability of working memory. Working memory enables you to hold information in your mind for a short while and retrieve that information when you want or need to.

Everyone who knows me knows that I struggle with anything practical, and that I forget lots of things and working memory is something I am not all that proficient at! For me this can make life challenging to say the least.  

People often note that I forget things, lots of things. If someone tells me their weekend plans, I often forget, despite not wanting to. I have been known to miss meetings and forget tasks. Trying to remember what I did yesterday is often extremely difficult. I rarely remember what I have read in books – including what I have written in my own! I have been working on a research project which is co-designed and I created a massive spreadsheet to capture and code all the data. I then went in and added codes / themes for each research question based on the data we collected through interviews. This morning, I tried to recall some of the themes without referring to the spreadsheet and I struggled to! I finished with this spreadsheet yesterday so one woudl imagine that the information presumably should still be in my brain!

I feel the most impact of these issues relates to my experiences in undertaking employment.

I really struggle with jobs where there are loads of ‘moving parts’ and multiple things I need to get across and remember. Some years ago I had one role which I had to leave because my manager saw my memory recall issues as being a performance issue.  Rather than trying to support me with strategies or give me more suitable work she gave me a hard time and initated a performance management process. Even though this was some years ago I still feel something of a trauma response around what became a very stressful situation. I don’t think the main issue was my performance, rather the need for my manager to understand the impact of my executive functioning issues on my work and work with me to address these.  Apart from this, my work – and my work ethic and level of loyalty to the employer – was of a high standard. You might imagine that seeing the positives of having some Yenn in your workplace would be a plus at work but sadly not in this instance!

I think some people view executive functioning and working memory issues as poor performance or some kind of intentional behaviour or being ‘slack’ – as if the person is being deliberately incompetent or careless. For me – and presumably others – this is far from the case. I am defined by work. Work is tied in with my identity and my sense of pride in who I am. The idea of underperformance horrifies me and contributes to the kind of high anxiety that actually makes my performance dip!

I think the idea of the spiky profile of autism applies here. I am so good at some things that others find it hard to comprehend and I also find other things that others take for granted immensely challenging.

Employing autistic folks, to my mind, is not about ‘fixing’ them or approaching management through the lens of ‘one size fits all’, infantilism, tokensim, viewing them as ‘inspiring’ or as superheros or savants. When people do have spiky profiles in the workplace the key is to understand what this means for the individual and support them to undertake their work well and providing support and encouragement.

My working memory issues might make me seem incompetent to some people. I have created a series of structures and strategies to address working memory issues and address them as much as I can. Things like tracking spreadsheets, traffic lights on tasks, Outlook calendar invites and email flags and categories all help me to avoid missing something. I still miss the occasional meeting but most of the time I do quite well with my task tracking and other strategies. Like many executive functioning issues, I cannot ‘fix’ it but I can put in place some helpful workarounds to make any impact less.

People don’t often understand how someone with a master’s degree and 18 published books can be apparently so dreadful at remembering things and being practical. I suspect it is one of those brain wring things so not something to be fixed but more to be understood. When I had that manager who performance managed me, she always seemed disappointed in me for not improving even though I was doing my utmost to improve my performance. I will contrast this manager to one of my closest friends. This friend knows I am not practical and can’t hold things in my brain for very long. This friend does not try and change me. Instead, she supports me with the things I find hard and encourages me to build more practical approaches where I can.

Given these two examples I know who I think is doing the best job around supporting me with my working memory issues and it isn’t my former manager!

Executive functioning issues can’t be ‘fixed’, but they can be supported through others understanding and not just viewing the deficits and challenges but also the positives a person has to offer. Providing understanding and assistance is far preferable to apportioning blame and judgement. I would like to think that regardless of memory difficulties employers can see beyond that to my strengths – and the strengths of others with similar experiences.  

Yenn at work at the Australian Public Service (2015)

“If you can see it you can be it” Representation and neurodiversity

The idea of representation when applied to marginalised groups centres around the visibility of people from that group in the public domain. For example, autistic actor Chloe Hayden is a great example of positive representation in popular culture. Senator Jordan Steele-John is a great example of representation in politics. Representation is an extremely important concept in the neurodivergent and broader intersectional communities. Unfortunately much of the representation around at the moment is based in stereotypes and assumptions and is actually damaging to the cause of inclusion and empowerment.

Representation is essentially about visibility, respect and understanding. There is a saying ‘if you can’t see it you can’t be it.’ This is particularly relevant for neurodivergent people. I tend to expand that notion to ‘If you CAN see it, you can be it’.  The more positive representation we have in the neurodiversity and inclusion space the better.

Some representation is great and helps and supports us. Sadly some other sorts of representation are not. For example, in recent years there has been an explosion of autistic and other neurodivergent characters in popular culture, such as on TV and in movies. This is sometimes a good thing and sometimes not! As an autistic person I cringe every time someone tells me that I should watch [insert problematic and probably significantly ableist TV show or movie about autism] and assuring me that I ‘will really love it’. I have taken the advice before and regretted it – a LOT! Many of  these portrayals are based in stereotypes and seeing autistic people as figures of amusement, pity or through a of voyeuristic lens.

Portrayals of neurodivergent and Disabled people in the media and popular culture often focus on stereotypes and ‘inspiration’. This is not at all helpful – for Disabled folks and for anyone else! This TED talk by the legendary activist and comedian / broadcaster the late Stella Young focuses on the idea of ‘inspiration porn’ which absolutely relates in the area of representation and disability: https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much

I might add that, similarly to inspiration porn, tokensim is not positive representation and does not help in the cause of inclusion either!

Thankfully it isn’t all bad. There is definitely a lot of very positive and helpful representation out there. I often think about neurodivergent young people and the messaging they take on board through seeing various representations around neurodivergence and disability. It is so important to have helpful representation which supports inclusion and respect and particularly for young people.  

The more of us representing across all areas of society – employment, popular culture, politics and civic life, leadership and all kinds of other roles – the better. And you do not need to be famous or have a big profile to represent. We can all do representation in our own way and in our own communities. In doing so we are helping to change the narrative and help make a more inclusive world.

Image: Photo of Yenn and Australian of the Year and neurodivergent activist Grace Tame

Being aware of ‘me’ messaging – or why it probably isn’t about Yenn

I had an epiphany yesterday – albeit an epiphany prompted by a friend. I have known this particular friend for a very long time. I respect and look up to her. She is one of my favourite people in the world. Every so often I make a comment, and my friend will say ‘it’s not all about Yenn!’ In the past I just thought it was about my autism rand not being something I could be aware of and address.

I actually am quite self-focussed. I like me. I am proud of me, and I tend to think I offer a lot to the world. I also have impostor syndrome and rejection sensitivity and have experienced a lot of trauma and invalidation – meaning the inside of my brain can be an interesting place at times! My positive views of me have been a protective factor in a world that has not always been kind or respectful of me and what I bring to the world. I suspect my self-focus possibly serves a purpose around protecting me from hatred. I like and value myself and this makes it harder for bigotry and bullying to ‘stick’. However, it is also presumably annoying for others, especially now that I am what I term a ridiculous overachiever! So today I recognised that my being so self-focussed might be a thing I can change.

I struggle with self-awareness in communication. I struggle to be aware of what I am saying and how others perceive my conversation. I usually address this through being extra nice and kind – then if people think I am being inappropriate or irritating they won’t mind so much! I find the idea of looking in on myself and being aware of what I am saying quite tricky at times, so when faced with the statement ‘it’s not all about you Yenn’ I have struggled to know which thing I was saying that prompted this response! I forget what I say a lot of the time, often immediately after saying it! This can certainly be tricky in terms of communicating with others.

As I mentioned, today I had an epiphany – prompted by the statement ‘It’s not all about Yenn’. I hadn’t realised before how much I approach the world in a Yenn-focussed way! Looking at my social media, almost everything is about my personal experience rather than advocacy-type things – although given I belong to intersectional groups, advocacy probably happens through my personal experience. Not that it is necessarily a bad thing, but I hadn’t realised before today. I looked at my Yemes in Canva – which total around 2000 images – and it took several scrolls through to identify any which didn’t start with ‘I’ or ‘My’! Taking this on board I am going to try to be less ‘it’s all about Yenn’. Other advocates don’t seem to do this. They talk mostly about issues and activism, not what they are wearing or the fact their cat caught a fly!

I think there is a place for my very personal Yenn brand, but I also think it might be nice to shift the focus from me to other topics a bit more in my work as well.

It is an odd place to arrive at after fifty-one years. I don’t think my self-focus is because I think I am better than others or my life is more interesting. It is just how I am. I have used my Yenn brand to overcome a lot of challenges but maybe now it is time to let some of the Yenn things alone and focus more on changing the world in whatever way I can. This is particularly true in the current world political situation. I am an autistic and transgender person so there is plenty I can do – and need to do – to work towards addressing the bigotry and hatred which is out there. I mean I have been doing this for a while but through the lens of brand Yennski.

I have certainly been having a good number of epiphanies lately! I’m interested to see how this realisation impacts my work and how I interact with others into the future.

Thinking about intersectionality, disadvantage and privilege

A few years ago, I published a blog post and one of the responses was that I understood intersectionality where many other commentators did not. Kudos to me! (Although I had to Google intersectionality at that point to find out what I was apparently good at!) These days lots of commentators talk about intersectionality. It is a useful concept, especially in my line of work – Queer and neurodiversity advocacy!

Intersectionality is a concept which was identified by academic and civil rights activist Kimberle Crenshaw. Initially it was used to describe the compounded disadvantage experienced by women who were People of Colour. This was back in the late 1980s. Since then, the concept has been widened to include people from a number of other marginalised groups, including people with disability and neurodivergent people.

The concept of intersectionality is basically that if you belong to more than one marginalised group then this compounds the disadvantage your experience. There is a wonderful visual example of this. A while back a video did the rounds of social media illustrating the concept of intersectionality. There was a line of people who were about to have a running race. White people were told to take two steps forward, then cis gender men, then heterosexual people, then non-disabled people and so forth. Who do you reckon won the race? Probably not the fastest runner but the person who is least marginalised / belongs to the largest number of privileged groups!

Intersectionality is not an individual concept. It is a sociological one. This means that someone who has a bunch of privilege might actually have a crappy life and vice versa. For example. I belong to a bunch of marginalised groups but most of the time being me is pretty good! Intersectionality is about society and the structural barriers marginalised people face.

An important concept in this space is privilege. In this context, privilege refers to not belonging to marginalised groups. You can have areas of privilege and areas of disadvantage at the same time. For example, I am white and middle class (privileged groups), but I am also Autistic and Queer (marginalised groups).

Being privileged is not ‘bad’ – you can’t really help it, and it isn’t a choice! However, being privileged can impact your level of understanding of the challenges faced by others. It is important to be aware of your privilege and not come from a viewpoint of lacking understanding that you are privileged. The statement ‘check your privilege’ relates here. An example was a friend of mine who worked in a public service department. My friend is a woman from a refugee background and has a pretty good bead on intersectionality. Her boss – a white, cis gender, heterosexual, non-Disabled man – was putting together a conference. He showed my friend his proposed speaker list. She looked at it and said ‘you have no People of Colour, no First Nations people, no women…’ Her manager was genuinely amazed and said, ‘where did you get such incredible insight?’ He was not being deliberately discriminatory, but he had no idea of his level of privilege and that a conference would benefit from a more diverse range of speakers – or maybe that there even WERE speakers from diverse backgrounds!

People who are privileged often have no concept of their privilege. I imagine this is because it is not something they often need to reflect on – most likely nobody is telling them! For me as a transgender and autistic person I get a lot of reminders that I am different, but I don’t think it goes the other way so much.

Another area within the intersectionality space is about the difference between who blames who when there are issues. Generally – but not always – people from marginalised groups will fight the power so to speak. This is because they are marginalised, and wider society has either casued or compounded this and put barriers in their way. Privileged people – also generally but not always – are not able to fight the power because they are not oppressed by structures in society. Sadly, this can mean the turn on marginalised people. I always think ‘punch up not down’ in this situation – thanks to comedian the awesome Hannah Gadsby for reminding me of this metaphor!

Intersectionality is an important lens through which to view society – not just for those from marginalised groups but for everyone. It helps to understand diversity and inclusion and to be able to understand and support others and address societal barriers and discrimination. It is also a great support for those seeking to make a difference – such as activists and advocates.

Yenn’s rainbow boots!

One big fat Yennski! Or why judgement based on body shape isn’t very helpful

I have been overweight for a long time. I remember getting off a tram in Melbourne in 2000 and someone asking me – apparently in all seriousness – when my baby was due! I said, ‘I’m not pregnant, I’m just fat!’. I’m sure the person felt embarrassed. I didn’t mean to embarrass them – I was just being honest. I am fat so why would I be upset by someone thinking that I am! I am not ashamed of being fat. The main two reasons I put on bunch of weight in my twenties was that I was in prison and there were maggots in the food so instead of eating food from the kitchen I used my canteen spend for unhealthy snacks and lived on those for a long time. I didn’t have a lot of room to exercise in my cell so I put on weight.

Then there was my medication. I have taken anti-psychotic meds since I was 21. If you think anti-depressants are bad for weight gain, multiply that lots of times for their scarier cousins, the anti-psychotic meds. There is different degrees of impact with these drugs, but they do a few unpleasant things, including in relation to weight. The meds slow your metabolism and also increase your appetite. I wish I didn’t have to take the meds for this and many other reasons, but this is not an option for me – unless I want to be in a constant waking nightmare and being unable to do anything much.

My main problem with being fat is the expectations – and sometimes outright rudeness of others. People seem to manage to be very judgemental when it comes to body shape. They think I must have ‘let myself go’ or that I have no willpower of self-discipline. This always seems odd. Why does body shape so frequently result in judgment and rudeness from others? Other health things do not do this to anywhere near as a big a degree. I remember when actor Rebel Wilson lost a bunch of weight at around the same time she was kidnapped during an overseas trip. The media were by far and away more interested in talking about her weight loss than on her almost being murdered by criminals!

I did lose a lot of weight a few years ago, People were so excited by this. They would congratulate me on it. It struck me as odd. Why was my body size so important to other people? I know there are often health issues associated with weight, but I think the judgement goes beyond that. In some places in the world, big women are seen as being highly attractive, so it definitely isn’t a universal kind of judgement.

I wish people didn’t judge a person’s character based on the shape and size of their body. I am all for good physical health, exercising and so forth but I think the judgement and shaming around people being big – and especially women and girls – is not really helpful and it goes beyond concerns around weight and health.  Plus, it is mean and extremely rude. Unless the person making the accusations is perfect themselves then maybe they shouldn’t criticise others!

I don’t want to make a distinction between ‘worthy’ fat people like me whose weight was the result of things like medications and health conditions that they have no control over and with others who are big due to an unhealthy lifestyle. Doing that makes me just as bad as the haters! If we go around judging people left right and centre it makes for a very unpleasant world!

Anyway, I am happy enough to be a big person. It certainly doesn’t worry me all that much. My health focus is usually around my mental health and making sure I can continue doing what I do without my nemesis schizophrenia coming in and making me terrified and miserable. If the medication I take to avoid that happening results in me being big, well so be it!

Medication and performance – or where did my work mojo go?

I take a medication called Clozapine. As medications go it is a case of ‘this is serious mum – REALLY serious!’. Three of the potential side effects are life threatening and so I have to have regular blood tests, ECGs and Echocardiograms to be able to keep taking the meds. When I started on the medication in 2020 it needed to be done in hospital as an impatient and took over three months to titrate up to an effective dose. Clozapine is the medication of choice for treatment resistant schizophrenia. It is a wonderful medication, and I have not been unwell since I went on it.

However, clozapine is a pharmaceutical friend which comes with some major strings attached. One of these is it effect on my brain, and particularly the ability for my brain to remember things and manage lots of things at the same time.

In 2007 I joined the public service. I am intelligent and the work was engaging. I never had any worries around performance. Quite the opposite in fact. One of my managers told me I would be able to do any job in the department if I put my mind to it. Flash forward to 2023 and I was unable to do even a mid-level role in the public service. I struggled to do what was expected of me. Unfortunately, at the time I didn’t have very understanding managers so life at work was very unpleasant and I quit.

Up until recently I thought the issue in my public service role was solely my managers but looking back I realise that my performance actually was pretty patchy. I didn’t understand this at the time as I had no real insight into my work. I has never been an underperformer in the past so why I should I be now?

The realisation about the impact of my meds on my work only really sank in this week after I had to quit a job that I absolutely loved, mostly because I couldn’t keep up with the conflicting priorities and need to know who lots of people are and what they do. When I first realised this, I went into a bit of a panic as I thought maybe I won’t be able to work anywhere again.

Actually, I don’t think that is true. The three jobs I have left because of this issue have all been roles where there were loads of small elements which needed tracking and prioritising. When I have work which I can do one thing at a time, I seem to be OK. So my academic work is not too challenging, and my support worker work is also OK. It is a bit of a rude shock though, the idea that maybe the issue will worsen, and I won’t be able to work at all. I am defined by my work. My work is what makes me who I am. I love to work, so much so that I have to force myself take weekends!

I guess it is a sobering kind of thing. I am someone with schizophrenia with a large profile and a CV that would rival most senior managers. I am considered brilliant and competent. Authors frequently get their publishers to ask me to provide an endorsement for their books. I am a brand. I am sought after all over the world and strangers regularly come up to me and say how wonderful my work is. I have always had a sort of dystopian Yennski career nightmare. It involves me being old, chronically unwell and in psychiatric hospital and saying to the nurses that I used to write books and them not believing me at all and saying, ‘that’s nice sweetie.’ Being unable to work is probably the closest fear I have to my fear of death – which is significant! I mean imagine a world without Yennski Horrible!!

My various disability conditions haven’t posed much of  a threat to my employability for many years and having them do so now does not fill me with joy I must say! But I guess it helps to view myself as vulnerable and for there to be the possibility of limitations on what I do now and into the future. It also helps me to appreciate how well I have done thus far. A lot of other people with schizophrenia can’t work at all or spend lots of their lives unable to be part to the workforce. I used to be one of them, then I wasn’t and maybe possibly I will again in the future, I don’t know – and uncertainty is not my friend.

I am not quite sure how I should approach this. I tend to be pretty competitive in my attitudes around being me so maybe I should turn this into a competition – see how long I can continue working for, how many suitable roles I can find, whether I can actually improve matters, maybe how philosophical and accepting I can be about the whole situation!

I don’t have any solution to this at all. No nifty little Yennski pearl of wisdom, no free, unsolicited advice! I guess just embrace the uncertainty and aim to be the best Yenn I can be regardless of what I can or can’t do jobs-wise. And cuddle Sunflower too of course. There isn’t much that the world can throw at me that can’t be solved with some cuddles with a purring Sunflower the kitty.

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Yenn gets bolshy – or why ‘support’ can be unsupportive for Disabled folks

This afternoon I accompanied an autistic friend to an appointment with a Government service that I won’t name but suffice to say it wasn’t a very edifying experience. My friend needed to re-register for a service. We saw a staff member who I would describe as dismissive, invalidating and disrespectful. I do not get angry very often in day-to-day life, but I was quite angry because of how this man behaved.

My friend said on a number of occasions that they find phone calls triggering but the staff member insisted on booking in a phone call. I said to him that this was an accessibility issue, and he gave me the kind of look reserved for if I have removed a live fish from my pocket! Accessibility apparently was not something we could ask for. The experienced was invalidating and unhelpful and I am not even sure if we achieved what we needed to! We need to go back on Monday, and I must say I am not looking forward to it! The experience today was disempowering and the staff member rude and unpelasant. I suspect if my friend had been a white, non-Disabled man that the experience might have bene different – although maybe not!

Sadly, these kinds of experiences in accessing government services are not uncommon for Disabled folks. The sorts of assumptions levelled at service users are significant. We are assumed to be dishonest and seem to be lumped into a conglomerate group despite the fact that this is an area where it is not ‘one size fits all.’ Requests for changes around access needs often go unnoticed, ignored or outright denied – like our experience today – or officials have very limited understanding of what access needs entail. We are often seen as being difficult for requesting the most basic of changes or supports. There does not seem to be a great deal of empathy going on a lot of the time.

While I was horrified about today it was far from the first time I have experienced such treatment form services which are mean to support popple. I often joke that people who are able to navigate bureaucratic systems should be offered a job in the bureaucracy themselves! Joking aside, I struggle to understand how hard it is to treat people with the most basic of human decency and dignity. I do think it is amusing that this service provider today had no idea he was being disrespectful to the friend of a bestselling autistic author and advocate with a big profile! Although I think when providing services to the public – and Disabled people particularly – people should always act as that that person is as ‘important’ as the Prime Minister. Because they are. We all are. Being disadvantaged, and in particular poor and disempowered, makes no difference to a person’s worth or a reason to treat them any differently than you would someone in high office. We deserve decency and would like for people providing Government services to see things that way.

Of course there are many wonderful bureaucrats. I was one myself up until early last year and many of my colleagues in the 17 years I was in the services were absolutely lovely. But it is a definite problem if people in those positions are not respectful and inclusive and that customer-facing staff need to understand what accessibility is, what issues are faced by Disabled people who access their service and an understanding that we all matter.

I told my frind today that I would write a letter to the appropriate Minister about what happened, and I will do that. I know the response with be drafted by a graduate public servant, but I will do it anyway because I have the right and I want to ensure there is a record of what happened and why it was not OK. I want a world where accessing Government services doesn’t cause trauma and people actually get the support that the services were created to provide.    

  

What you see is what you get – or how and why I don’t mask any more

I just presented at and attended a wonderful conference at the Sunshine Coast – and kudos to organiser Cammy for making such an amazing event!

Once thing I noticed was that people told me I was ‘authentically autistic’ – happy to be myself with no need to seek approval from others. While when I was younger, I tended to mask as a matter of survival but these days that is far from the case. I like and value myself just as I am. I know I probably appear ‘very autistic’ (whatever that means) while others take on a persona which makes them less likely to face criticism and hatred for seeming unusual or ‘weird.’

These days I am unashamedly me. If anyone has an issue, then it is their problem to my mind. I always aim to be kind and respectful and I have no wish to try and convince neurotypical folks that I am one of them! The result of this tends to be that people either love me or hate me – and indeed this has been the case for my entire life. I think I have always been visibly ‘different’ – this made life very hard at school. Let’s face it, it made it hard for me as an adult too! I think that now I embrace my Yenn-ness which makes it a lot harder for unpleasant people to attack me. Attacking a person who is proud and confident in themselves tends to backfire on the attacker in my experience.

I used to mask a lot. I spent four years as a prisoner and when I first went to jail, I realised it was essentially high school in terms of the social dynamics, but the bullies would kill or seriously injure you rather than just saying mean things. I very quickly figured out what was expected of me and made sure I did that! I often say it was like I was an actor playing an Oscar winning role!

Shortly after I took steps to improve my life, I realised that I had no idea whatsoever about who I was. I had spent so long masking and trying to be acceptable in order to survive that I had lost any sense of who I truly was. I didn’t know my character or personality. I decided that I had the opportunity to create a new person, to choose who I wanted to be and work out what I wanted my character to be, so I did that.

However, I still struggled with wanting to appear more like the other humans and not be ‘odd.’ I used to have a very highly calibrated radar for embarrassment and when I did things that others viewed as ‘weird’ I felt really ashamed. It took me seven years to accept that I was autistic and even after that I still struggled and felt there was something ‘wrong’ with me. It took a long time to get to where I am now, but I have ended up in a good place.

Simply put, these days I do not mask at all. I am 100% myself in every social or other situation. I am proud to be who I am and because I like and value myself, I am delighted to be me. The negatives of being an 100% authentic out loud and proud autistic Yennski is that a lot of people treat me badly – treat me like a child, or like I am being deliberately difficult. I often get underestimated. The positives of being authentically myself always far outweigh the negatives though. I had an autistic friend tell me I don’t get burned out because I don’t use up all my energy masking! Given that I am super accomplished people can be very surprised when I tell them about what I get up to in terms of my work.

I like being unashamedly me. I wish we didn’t need to do the masking and acting because things have changed and we live in a world we are respected and accepted as we are. I have no time for ‘fitting in’. I am 51 years old and at this point I reflect that when it comes to being disliked by people I don’t give a crap! The me people see is the true me and if they don’t like that, well their loss!

‘Nobody gets out of here alive!’ – The unexpected positives of thinking about mortality

The title of this post is a quote from 1960s band The Doors’ lead singer Jim Morrison – who proved himself correct shortly after making this statement by dying at the age of 27!

Why is Yennski thinking about death, you might ask? It isn’t a very edifying topic – kinda morbid and sad. But Jim Morrison was absolutely correct, every single one of us has a limited time on this planet.

I have heard of some young people in recent years who basically give up before they start in life, not engaging in study or work or seeking relationships and connections, overwhelmed by the fact that we are all going to die and particularly in relation to concern around climate change. I actually wonder why this is not an approach taken by more people. It is sort of logical in a depressing way.

For me, I am ambitious, motivated and want to change the world as much as I can – which admittedly probably isn’t a lot! So why am I presumably getting negative and morbid?

Well, there are a few things. The first one is that I am now 51. I mean a lot of people are older than that, but my physical and mental health seem to be deteriorating at an alarming rate lately. My grandmother lived to be over 100 and I used to want to follow in her footsteps but now that I am in constant pain from my arthritis and I have less energy and other health things go wrong that maybe being around for another fifty years might no longer be an aspiration! I should confirm I am very happy to stick around and deal with my health issues – please don’t call the crisis team on my behalf! Health issues aside, I am happier at the moment than I have been in a long time – I’m just happy but in pain!

The other thing which has happened has been a greater tolerance of the idea of my own mortality. Those who follow my work may have noticed that I have a pretty strong sense of who I am. I am very present and very grounded – these are probably positive qualities, but they mean I have always struggled with the idea of my own death. Now I think I am maturing and moving beyond that – I no longer avoid the topic and reflect that the point of my being here to  make a difference. I feel that my every act should relate to leaving a positive legacy. I realised that I want to leave the world a little better off for my being in it when the time comes for me to say goodbye.

And finally, I have a recent / current thing which is making me consider these issues more closely. It is probably nothing to worry about but last week I got a call back form breast screen after a routine mammogram. I have to go back and have more thorough screening – so either there is something to worry about or not. I guess I will find out at the appointment or shortly afterwards. To use the late great author Terry Practhett’s term, if anything iffy shows up it will be an ‘embuggerance’! I am crossing everything – including Sunflower’s sweet little furry paws – that I am OK, but I honestly don’t know. I am not as freaked out as I was. If something shows up, I will manage it, but it has certainly got my train of thought going down some difficult metaphorical tunnels!

However, amidst all the stress and fear of potential doom I realised something pretty cool – actually a couple of somethings. The first is, thinking about my death possibly happening sooner that I would have expected puts everything else into perspective! Not much point worrying over petty things! Secondly, I thought to myself ‘what do I need to do before I die’ and the answer was nothing. I has done everything I need and want to do. I have turned my life around to go from very desperate drug addict and prisoner who couldn’t hold a job and spent time homeless to being an author, presenter and all round rocker of casbahs. I have an amazing house, my friends are all amazing people who I love, I have a great relationship with my family members after some difficult years, I have meaningful work – including the best job I have ever had (my role as Deputy CEO External Relations at the Disability Leadership Institute). As such I am happy to go whenever my time comes. I have no regrets. I am not sure I know anyone else in a similar situation. I think those two positives probably outweigh any stress and unpleasantness and uncertainty! ….And if my tests come back OK, I will be throwing a party!