What happens when you fear the worst and then it happens

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

31 years of accessing mental health support – or why I keep expecting to be discriminated against in hospital!

I am writing this one from hospital. Haven’t done that in a while! I actually want to focus on hospital and mental health services. As you may know, I in addition to my AuDHD diagnosis I have anxiety and schizophrenia. The anxiety, Autism and ADHD I have had all my life – these are not acquired! Schizophrenia I have had since I was 21 in 1995. If you don’t know about schizophrenia it is characterised by episodes of psychosis, meaning reality gets a bit confusing and uncertain. For me it often involves scary thoughts about death and religion, visual hallucinations and auditory hallucinations (visions and voices), and thinking things which other people tend to think are wrong, even if I am convinced that they are not! Everything is scary. It is like a waking nightmare. It makes me vulnerable and easy to take advantage of it is also very debilitating an unpleasant for me. It also often (but not always) comes with mood issues – usually extreme depression. It is definitely not my friend!

So along with needing to take heavy duty meds for the past 31 years, I have also had A LOT of hospital stays, including this one. In hospital I am particularly vulnerable. The amount of choice and control is almost non-existent, even now. But the services now are so different to what they were like when I was accessing services thirty years ago.

My first hospital stay was in Shepparton, Vicotria in a hospital which (thankfully) no longer exists, Patients (and I say patients not consumers because if you are in hospital you are a patient – be that for mental health or other reasons. Anyway, the patients in this ward did not have a single room for me or even shared with one other. Instead we were all in dormitory for women or men – those were the gender options! It was not good.

A few years later I found myself in hospital and the head doctor was an awful bully who misdiagnosed me and essentially sent me to prison in what would be the start of four years of incarceration and misery. This doctor seemed to follow me around. What’s more he said I was not autistic – long story – and is the only mental health professional in my life to think I was not autistic! In a sort of ironic twist of fate, this doctor ended up with depression and took his own life in the early 2010s. While I don’t wish suicide on anyone I also did not shed a tear for this man.

I stayed healthy for many years, got a professional job, moved to Canberra – and decided I did not have schizophrenia. I took the meds – not sure why – but thought that public servants couldn’t have schizophrenia. So, it came as a bit of a surprise when I got unwell and had to go to hospital!! That admission was in 2010. The first ward I went to was horrible – unpleasant building and staff attitudes t match! Nurses would not respond if you knocked on the window of the nurses’ station. A while later a new ward was built to replace this one. Staff told me how wonderful it would be. I thought ‘only if you replace the staff along with the building!’ They didn’t and as the main issue was the attitudes of a large number of the staff then the new ward was basically a nice building which was filled with misery!

In 2015 in the ACT (where I live) a new Mental Health Act was released. I have seen lots of policy shifts over the years and usually these make little or no difference. However, the 2015 new Act does seem to have made a positive difference.

My long history of disempowering and harmful hospital environments has meant that I am constantly surprised when hospital staff are respectful. A few positives I have seen during this stay and which I haven’t really seen anywhere else are:

Staff ALWAYS come to the nurses station window when you knock and do what you need from them, be that charging your phone or checking your meds if you have a query about them
They are respectful of my pronouns and gender identity. I am serious folks, they are!!
If something worries me, they listen and try to resolve it, even if they do not share the concern I might have
Nurses actually OFFER to talk with you about something concerning you if you need to! This is amazing. To limit the unpleasantness of this I need a couple of containers of orange juice to drink between sips of medication. Not only are the nurses OK with this, but they also now come and give me the medication and the two containers of orange juice!
Staff respect me and my work. This the first admission where this has been the case. Yesterday the art therapist told me it was a privilege to work with me! The consultant psychiatrist said I am the more productive and accomplished person with schizophrenia the has evert met. One of the nurses said the staff always talk about me in a good way – and what I do, especially my PhD.

I keep expecting rudeness and discrimination and then being surprised. When I think about it, the previous approach of mostly being punitive and rude to people who are trying to access support for their mental health is wrong on a number of levels. They should have been nice, helpful, resepctful and inclusive all along!

I will close this post with something sobering. I used to have a private psychiatrist. I was in a session with him once and I said, “If I was born 40 years ago, I would have lived in an institution.” He thought about this for a while then said slowly, ‘Yes. You would have been in the kitchen because you are reliable.’ Imagine this. I am an 18 times published author, international keynote speaker, undertaking PhD research into an important topic, mentor and all-round overachiever, And I would have ‘been in the kitchen because you are reliable’. The frightening thought is not about as this didn’t happen to me. The frightening thought is how many others like me worked in the kitchen because they were reliable? What might they have achieved and what good things might they have offered the world?

This is an image I made yesterday reflecting on how my schizophrenia relates to my identity. I actually really like the picture

I’m not the ‘woke police’ – or why do some people think being respectful is a bad thing?

As most people who read this blog probably already know, I am non-binary gender. My pronouns are they / them. This is not because I somehow want to make people’s lives difficult or because I want to ‘shove my beliefs down people’s throats’. It is because those are my pronouns, how I want others to understand me and my sense of my gender. Some people struggle with this, but I assure you my pronouns are about my identity and nothing else. Would you give a cis gender man a hard time because he described himself as ‘he / him’? Almost certainly not. But my they/ them pronouns perform the same function as his ‘he/him’ ones do! My pronouns and name are not really political. They are just how I want people to understand and describe me. There is no agenda to this, just me wanting people to refer to me in a manner which actually describes who I am. I am not the ‘woke police’. I am Yenn.

When I was younger what we now term ‘woke’ was called ‘political correctness.’ Media commentators – particularly those from the more conservative parts of the political spectrum – said repeatedly that political correctness was a bad thing. Apparently, it was about giving people who were not in any marginalised groups a hard time and somehow was going to destroy society. Or something. It was a long time ago. However, long time ago or otherwise, I remember wondering why people had issues with what was called political correctness. My feeling was why would people intentionally want to be discriminatory and disrespectful and mean? I know I didn’t want to be rude or discriminatory and I thought that being respectful was a good thing.

The biggest critics of ‘woke’ (by which I mean essentially being a decent human and respecting other human beings who happen to belong to marginalised groups), do seem to often be people who do not belong to any marginalised groups. This is known in sociological terms as ‘privilege’. It means the absence of belonging to a marginalised group and includes being white, cis male, heterosexual, non-Disabled etc. Many people belong to some marginalised groups and some privileged ones. For example, I have white and middle class privilege plus I have a high level of education, while I am also autistic and ADHD, Queer and have a criminal justice history form the 1990s. And just to complicate things, some people have what my socialist friends would call ‘mixed consciousness’ which is where a person belongs to a marginalised group but carries some bigotry or bias. An example of this would be if I had some ableist attitudes, despite being a Disabled person.

I often think about privilege that it isn’t a bad thing of itself. It can become a bad thing when people do not know they have it! And the thing about privilege is that people don’t generally get reminded of their privilege. What I mean by that it’s that if you look at me, a Queer autistic person with a difficult past, I am often reminded of my ‘difference’, – sadly frequently by bigots. But if you do not belong to any marginalised groups, it is rare for anyone to remind you of it, hence that sense of privilege might not be known. And people who do not belong to any marginalised groups can actually be quite upset when their privilege is raised or if they feel challenged.

When I was as a public servant I had a wonderful Branch Manager. In my Branch we had me – and I was the chair of the disability network and my Director who was active in the First Nations Network. One of the other Directors was, well the nicest way I can describe him is as an angry white man. The Branch Manger went around the room and asked the team what we were all working on. When she got to my Director and me, she asked about the diversity networks we were involved with. The angry white man said, ‘where is the network for straight white men?’ Tempted as I was to say ‘there is. It is called the world!’ I kept quiet. This situation highlighted to me that privileged people can feel quite threatened but the idea of anything challenging that privilege and may see inclusion and diversity as something to be concerned about or in some way as threat to their way of life. Take it from me, it almost certainly isn’t! I guess this may be one source of the unpleasantness around ‘wokeness.’

Essentially ‘woke’ should not be a dirty word. I think respecting, including, accepting and listening to those from marginalised groups is a really good thing. Supporting others, being decent and just basically ‘not being a dick’. Being supportive, being an active ally, learning and listening. These are not bad things. And inclusion is not a seesaw. If I gain something it doesn’t necessarily take away from anyone else.

A picture of Oscar Wilde – I wonder what he might think of this post!

Oh no! I’m the responsible adult! Or why ten years in institutions can impact the ability to be responsible

I will need to start this post with some context from the part of my life which I term the ‘interesting past’ or alternatively ‘five lost years’. Between 1994-2000 I was a prisoner and for a farther six years I were in residential mental health care or long-term hospital stays. Put it all together and I have spent around ten years of my life with no responsibility at all! My food was bought for me, there was no rent or mortgage, I didn’t have to make any significant decisions, I was told what to do and when and how to do it, most of the time I didn’t need – or have – much money. I didn’t have to manage anyone, I had no kids or even pets. And I had almost no power or authority.

And we are not talking about the 1990s for all these periods in care of varying degrees of unpleasantness. As recently as 2021 I spent some months in a residential mental health care program called Step Up Step Down.

I suspect that when people see me – those who know me and those who just know my work, they probably think I am very responsible. In fact, amazingly, I am quite responsible, but I am usually terrified of responsibility. When my brother’s kids were little (under five) I was staying with them and my brother and siter-in-law wanted to get out for a couple of hours. They left me in charge of the kids. I was terrified that something awful would happen when I was minding the kids even for a couple of hours.

When I was a public servant and in some of my jobs since then I have been given responsibility for managing staff members. I absolutely hate managing people. I have no confidence that I know how to support them to be happy and productive or how to set boundaries!

The weird thing about such a long history of institutionalisation is that I actually do sometimes experience nostalgia for the time what I didn’t have to worry about paying the mortgage or making difficult decisions or just being in the big scary world. I am a big fan of the Borg in Star Trek. My favourite character is Seven of Nine – a former Borg drone who is rescued and becomes almost human. All the other characters are terrified of being assimilated by the Borg but Seven of Nine is more philosophical about it- presumably because that used to be her life and she was less bothered by the prospect of being assimilated into the hive mind having been there already! I think my attitudes around institutions might be similar. I think about the possibility of me becoming really unwell with schizophrenia and having to sell Yennski HQ and move into a supported housing place. For many that would be a nightmare but for me it would be something I did in the past and it wasn’t that dreadful. Although don’t worry – I do want to stay at Yennski HQ and have no plans to intentionally stop taking my meds or anything like that!

The thing which gets me is when there is a group of people and they see me as the ‘responsible adult’. I struggle with this – although outwardly people probably wouldn’t be aware of this as I can mask pretty effectively if I need to, even if I am very stressed inwardly! The stress about responsibility teams up with the impostor syndrome and they get together and have a bit of a field day. I am actually highly responsible if I need to be, it just terrifies me! I am good at lots of things so I think people might think I should be good at everything. I am really not. PLEASE don’t ask me to look after your kids!

I hope that my tally of institutional stays remains at ten years until I am no longer around. I think that ten years is more than enough for anyone! Despite the stresses of having a mortgage and people expecting things from me, I am definitely happier being responsible, mortgage-paying Yenn and not institutionalised Yenn!

Bedroom at Yennski HQ

I am not helpless – or an inspiration!

I have a bunch of disabilities and health conditions. I even have quite a well-funded NDIS plan! When I am out and about people tend to treat me like am a small child that needs help to do whatever I am doing. It is extremely irritating! I left home at 17 and got a job and went to university. I have a mortgage and I am a PhD candidate with a full scholarship. I have lived independently and worked for longer than many people have been alive. When those with the ‘Yenn is helpless’ assumption find out about what I would term my accomplishments, and an odd look comes over them. It is almost as if I can see the metaphorical cogs grinding around in their brain wondering how this helpless child can write 20 books and give keynote presentations and undertake PhD research and so forth.

The thing which gets me most about his is that many other Disabled people also are viewed as helpless and get treated like children but they don’t have a bunch of overachiever-y things so the assumption remains that they are all deficits and no positives and they should be paternalised and infantilised and have things done for them whether they want to or not! Oh, and please, please don’t get me started on ‘I will pray for you…’

I remember being at a conference once and I was in the quiet room – which for some reason was full of apparently non-Disabled conference volunteers. We were having what I thought was an interesting conversation when one of them sprung this on me… “So Yenn, do you live at home with your mummy?” I was pretty floored by this but managed to respond and say that no, I lived in an apartment where I was paying off the mortgage with wages from my middle manager role in the Australian Public Service! The assumption that I lived at home when I was 44 and presumably was unemployed, was, well, odd and I suspect had I not been Disabled / autistic they would almost certainly have not asked me this!

Those assumptions are infuriating for a large number of reasons. The other one is what the late great activist, Stella Young, termed ‘inspiration porn.’ This is where a Disabled person is called inspirational for doing things which would be unremarkable if a non-Disabled person did them. For example, I once had someone tell me how amazing I was for taking the bus to work every day!

One of my personal challenges around this issue is that some of my history and how I managed it and got to where I am now probably is genuinely inspirational which is certainly confusing! But taking the bus is clearly not one of those experiences!

The other thing I have only recently been aware of is my perception of myself as compared with that of others. Inside Yenn’s brain is a very nuanced picture of a competent person with lots of great things to offer the world. I have goals and intentions. I am motivated to make things better. I am good at being me and areas where I have deficits are areas where I can usually outsource to a person that can do those things for me. Most of the time I am not focussed on my deficits. I don’t feel helpless or in need of constant support – and particularly not from strangers and especially strangers who want to pray for me!. I need inclusion, acceptance and respect, not strangers trying to fix me! When I did a functional assessment for my NDIS plan last year it was clear from the answers to the questions that the OT doing the assessment thought I was profoundly Disabled and in need of a bunch of funding but that seemed really odd to me. There was a disconnect between my understanding of my needs and his and I don’t know which – if either – was ‘correct.’ Since then, I often notice this difference in the perception of me between my own perspective and that of others.

I think deficits thinking and assuming all Disabled people need significant interventions to navigate the world – and especially when we don’t – isn’t really very helpful. I also think tokenism and inspiration porn don’t help anyone either. I think some of the issues here are around the assumptions and stereotypes that so many people have. Instead of seeing someone and assuming they are not capable or need your support instead come from a perspective of listening and finding out what that person thinks and feels and needs prior to stepping in and doing it on their behalf – or assume they are inspirational for taking the bus! And, unless we actually are children of course, we are NOT children! If I need help and I am able to, I will ask for it.

Yenn, doing something actually impressive – launching one of their books!!

Look out for the trolls!! Never in the mood for bigotry and hate

Content warning: Brief reference to suicide

I wasn’t sure whether to write about chronic pain or internet trolls today. I think the trolls have won out!

Yesterday I posted a meme intended to challenge racism and it went somewhat viral. This prompted a LOT of comments, sadly many of which were from trolls and haters. I think the racist trolling was almost worse than the transphobic trolling that I experience regularly whenever I post about gender diversity or sexuality.

Yesterday I was not in the mood for trolls. (Actually, is anyone ever in the mood for them??) I was sick with a cold meaning I am unable to sing at the Qwire concert today that I have been looking forward to and putting in lot of rehearsal time over the past several months. I was in a whole bunch of rejection sensitivity and impostor syndrome about my PhD, and I was worried about income! I guess I should have thought that before posting something which might be (read was) contentious. I am actually a very innocent person and never anticipate hatred aimed at my work because I don’t actually ‘do’ hatred or bigotry! I guess chalk it up to experience for the future.

However, I shouldn’t have to censor my work unless it is actually harmful or offensive which my post yesterday was not.

When this kind of thing happens, I always wonder why. Some of the comments from people who presumably I have never met were so hostile and filled with hate that it amazed me. I never see something I disagree with online and then personally attack the person who posted it, even if I really strongly disagree. I might make a comment challenging whatever problematic thing they are posting on, but I never personally attack them. Some of the hateful comments yesterday were deeply personal and very upsetting – and one used more poo emojis than I have ever seen in a single post!!

I think one of the problems is – and this applies to me maybe but in a different way – that when you are on your computer or phone looking at social media, the only person there in physical actuality is you. The screen separates you from the reader and as such you lose the sense that you are potentially talking to millions of people. People who troll probably wouldn’t say or do anything unpleasant to someone who was physically in the room, but they do it online because of that sense of anonymity – even though they are actually connecting with a large number of people. In this sense it can be viewed as highly cowardly.

Trolls also tend to respond to one post and have no background on the person they are attacking. It makes online engagement quite stressful. I am always very trusting so don’t really expect it. Once I posted a sticker I have which features the trans pride and non-binary pride colours in a rainbow shape with the caption ‘trans and gender divergent people are welcome here.’ I thought nothing of this – it was a statement of support and inclusion, and I figured my online family would appreciate it. Sadly, some of my online ‘family’ also belonged to the family of bigots and asked things like ‘so are straight people not welcome in your house?’ Firstly, yes of course everyone is welcome, secondly straight is a sexuality not a gender and finally straight people do not face structural discrimination due to being straight. Trans people do, hence the need for a sticker! It is totally exhausting navigating these things!

There is a dangerous element to trolling too. It has caused suicides in the past. I can understand this as it has a massive impact and causes stress and self-doubt. The scary thing is that there isn’t a lot of accountabilities – either in the legal sense or in the banning the troll so from social media sense.

This is probably not the most encouraging of my blog posts but I did feel the need to write it after getting trolled. And the trolling yesterday was so bad that I took down the meme, partially because it had turned into a platform for racist bigots to be publicly awful and secondly because it was doing nasty things to my mental health. Safety online is a key concern. I wish everyone was accepting and respectful and didn’t; feel the need to attack people – and especially me! 0 when thye are trying to make the world a more inclusive place.

The sunflower lanyard – is it good for autistic folks?

I recently acquired a sunflower lanyard. For those who don’t know, the lanyard represents invisible disability. It allows people – usually in service roles – to know you have an invisible disability and adjust their practice to be supportive and inclusive.

Mostly I love the lanyard. It has already resulted in some helpful support. I flew to Perth the other day and when I was getting off the plane one of the other passengers asked if they could help with getting my carry-on baggage down form the locker. And when I came home, I got to board the flight first with no need to bare my soul and talk about my autism and schizophrenia in order to do so!

I have had a few somewhat ableist experiences with people behaving like I am totally incompetent which is annoying but, in all honesty, I used to get that before I got the lanyard!

It poses an interesting philosophical question around identity and disclosure. Wearing the lanyard is pretty much default disclosure or disability. Do I want to do that? Well for me it is probably not relevant as I have a public profile as an AuDHD and Queer person with schizophrenia. For me, my very existence is about talking about disability, but I imagine for others it might be a bit challenging to share that element of identity with people. I suspect that this is a consideration around choosing whether or not to use the lanyard.

One thing I particularly like about the lanyard is that it helps people to understand that I might be a bit different and atypical in how I interact with people. One of my pet peeves is neurotypical folks assuming I am neurotypical and then judging me harshly for being ‘weird’. The lanyard seems to help address this which is a big plus.

A potentially difficult thing about the lanyard is that not everyone knows what it means. So, you might be going through life assuming people you interact with know what the lanyard means but in fact they don’t!

I also wish we didn’t need to use something like the sunflower lanyard and that everyone was inclusive and understood how to be respectful of people- including those with disability. Sadly, at this point in time that isn’t really happening anywhere near as often as it should.

The lanyard does provide a great opportunity to start conversations with others, if you are a social person who likes to chat with people – like I am! Also if you see another person with the lanyard it can be quite affirming. I saw someone at Canberra airport last year who was wearing one and we got talking and it turns out he was an autistic advocate as well!

The lanyard can serve the practical purpose of alerting service providers and others that you may have needs that they can support you with.

So, is the sunflower lanyard good for the autistic folks? From my admittedly limited recent experience, I would answer yes. And my cat is called Sunflower, hence the image with this post!!

“You gotta have faith” … possibly! Or some brief thoughts on religion, faith and belief

I often remark that arguing about religion is similar to arguing about your favourite colour. You can never know who is right or wrong or if there even is a right or wrong. I also say that faith is an individual thing, and we all see it a little differently.

I was brought up very Christian. I remember as quite a young child asking my mum how we knew our religion was ‘right’. I thought I must have been pretty lucky to be born into the only ‘correct’ faith! This seemed foolish then and it still seems foolish now!

Some people say that religion causes wars. I think that may be a little simplistic. Faith is definitely used as an excuse of justification for war, but I am not sure the main issue is religion, rather it is political differences using religion to incite hated of others and drive participation in conflict. This is a bit of a nuanced view, and I guess it is probably easier to see religion as the root cause of violence, but I suspect it isn’t as easy as that!

My mum’s approach to faith aways interests me. My mum has faith which appears to be unwavering and is also very specific. She believes that the Garden of Eden, Adam and Eve, Noah’s Ark and Jonah in the whale were actual historical events. She also thinks that evolution isn’t true, although she assures me that her views in this area are ‘not simplistic’. It does baffle me somewhat that she is happy to believe some things which are completely preposterous and impossible and were written about thousands of years ago but is a bit thrown by evidence-based science! However illogical my mum’s faith might appear to be, it seems to be a huge comfort for her. I think it is how she makes sense of the world. It makes her life meaningful. And she is not a stereotypical bigoted, transphobic Christian. Not in any way at all. My mum doesn’t harshly judge others through the lens of her belief – which is something lot of Christians do and which gives them a very bad name with Queer folks like me.

I am actually a little envious of my mum’s faith. She is safe and secure within her belief. Her world makes sense to her. She appears to have little or no fear of death as in her world view when she dies, she will meet Jesus – something which I think she lives for. My mum’s faith enables her to live life in an uncertain world with certainty. I love this as it is so unusual for people to experience this kind of thing.

I myself do not really have much faith – maybe agnostic but no specific beliefs as such. I belief in being ethical and respecting others so maybe I am a humanist. Not sure. I have lots of scepticism and doubt though! I do worry about the meaning of life and where I will go – if anywhere – when I die. Sometimes I think I would love to have a faith – a belief system guiding me through life. I do have some belief in a higher power, but it is pretty nebulous. Surprisingly I am a fan of prayer. I often do it and it often helps me. Don’t worry, I am not one of those people that meets some random stranger and says ‘I will pray for you…’ even if they don’t want me to!

Some things around faith that I don’t think are OK include:

Judging people and using religion as an excuse for this
Being transphobic, homophobic, biphobic etc and using religion as an excuse or justification for this
Attacking people who don’t share your views
Using religion as an excuse for racism or prejudice
Thinking you are better than someone because you have a different religion to them
Doing ‘missionary work’ and trying to convert people to your view even if they have their own view. Historically this has been tied in with European imperialism in other countries, so it is also racist.

My usual approach is to respect people’s views around faith, as long as they are being respectful themselves. I also like that human experience is so varied and there are so many different views in this space. And I don’t want to argue about my favourite colour!

Reflections from the AIDS memorial

Last week I was part of a performance by the Canberra Qwire. The Qwire sings a wide-ranging repertoire of songs in support of the LGBTQIA+ community. I have been part of the Qwire since January this year. Here is a link if you are interested. I can attest that it is totally awesome. If you are interested, I am a tenor! https://www.canberraqwire.org.au/

Anyway, we did a performance last week as part of the Canberra AIDS candlelight memorial. It was a very moving event, and it got me thinking. Back in the day (1992—93) I was a member of an organization called ACT-UP – the AIDS coalition to unleash power. ACT-UP was an activist organisation, and our motto was ‘the AIDS crisis is not over’. We held protests and activities to raise awareness and understanding and make positive change for people living with HIV/AIDS. I remember having a protest march once and we went past Myers in Melbourne and chanted ‘we’re here we’re Queer were not going shopping!’ I often say this slogan now as a sort of verbal stim and people don’t have the context and don’t know what I am talking about!!

In 2006 I collected donations for the AIDS Trust, standing on the streets in the city of Melbourne asking folks for cash to support AIDS research and support. This involved a mix of nice affirming people giving money and horrible bigots telling me I was going to hell! Which brings me to some of the broader issues. AIDS is an illness, like cancer or heart disease. However, do people with heart disease or cancer get told their illness is God punishing them? In the 1980s when AIDS was first in the public eye, they were a perception that there were ‘innocent’ people with HIV/AIDS – those who acquired the illness through blood transfusions – and ‘guilty’ people – those who were gay men and to a lesser extent IV drug users. This is seriously not OK and it highlights homophobia and significant bigotry in this space – sadly some of which persists even now.

There was a movie made in the 1990s called And the Band Played On which is basically about the history of HIV/AIDS. One of the people in the movie was a gay man who was HIV positive and was in hospital. This man was a Catholic and his room in the hospital was number 666 – in Christianity the ‘number of the beast’. This man was filled with internalised homophobia and believed he was responsible for his own damnation just through his sexuality. Nobody visited him. Watching the film, this part broke my heart and also made me angry – why should anyone facing a life-threatening illness feel guilty and alone? And I am pretty sure if there is a loving God that they do not hate people for being gay or send illnesses to punish people for no reason! I guess it relates to that statement that ‘’man’ created God in his own image.’ And the ‘men’ doing this creating are bigots so they create a bigoted God. Bigotry, homophobia and hate have no place in health care – or anywhere else for that matter!

One of the things around AIDS is that it is an illness which has been highly politicised. It led to so much hateful panic in the 1980s. In Australia there was an awareness campaign which featured a TV ad of the grim reaper playing ten pin bowling and the pins were people who were knocked down by AIDS. It was horrible, bigoted, alarmist and not really very helpful to anyone. It demonised gay people and represented scare tactics of the highest order. I remember someone around that time had a sticker with said ‘hug someone with AIDS’ and loving this. There was at the time a belief that HIV/AIDS was transmitted by touch, or even by sitting on at toilet seat! The ignorance was immense. It wasn’t just ignorance around the illness, but ignorance driven by bigotry and homophobia. I think the hatred around HIV/AIDS probably put back the cause of LGBTQIA+ inclusion significantly and gave confidence to hateful bigots.

Things have changes since the 1980s. Treatments have meant people can live a long life. But there is still stigma and confusion and bigotry and the need for advocacy and activism. Which makes events like the candlelight memorial and similar events so important. I feel very proud to have been part of the activism around HIV/AIDS in the 1990s and then the early 2000s. It was work that needed doing and being a small part of the response and making change fills me with great pride. Yup – I guess we should all be part of the solution and be the change we want to see.