Rags to riches Yennski – an unlikely journey to overcoming poverty 

I always say that I have good activist credentials. These commenced when I joined the International Socialists at the age of 15. Unlike most people I wanted to be poor. My family were quite middle class and I saw this as a negative. And I ended up getting my wish for when I was 20 I got involved in drugs and crime, ended up going to prison, getting unwell with psychosis and going on the disability pension for twelve years. I also had a long list of very dubious accomodation – culminating in five years in an impressively grim public housing estate complete with my own stalker. I learned that being poor was not a very good aspiration and that it was much easier to become poor than it was to remove yourself from poverty.

The reason I am writing this is that I was having a conversation with my dad who said how nice it was that I now have a steady income which got me reflecting on how that came about. However my journey to that steady income was very challenging. In 2000 when I was 25 and a recently released ex-prisoner and resident of supported housing for people with mental illness I had an epiphany. I love a good epiphany and this one was a doozy. I decided that I wanted to be ‘ordinary’. While this sounds awful it was actually a positive motivation for change. My understanding of ‘ordinary’ was to have an education, a job, a mortgage and a suit.

Almost as soon as I had my epiphany I set about putting it into practice. The first thing I did was to enrol in university. I thought the only things I knew about were art and writing so I enrolled in a Fine Art course. I loved university and it was rarely stressful. After a year at university I thought I was ready to get a job. One of my fellow residents at the house I was staying in was working in a restaurant washing dishes. They needed another dishwasher so I started work there. Sadly it was not to be. I was such a perfectionist that I was terrified of making a mistake and thought if I did that the restaurant would go out of business. I was so determined to make employment work out that I kept at it for a couple of months but the stress chemicals had a party in my poor little Yennski brain and tripped off the psychosis chemicals. I got very unwell and ended up in hospital and had to quit the job. At the time I remember thinking ‘I can’t work now but I will work one day.’

Employment – which I knew as my only realistic means of escaping poverty – was extremely difficult for me. I did not try to find work for another couple of years and when I did it was a volunteer job – which I figured was less stressful than working for a wage. Over the next few years I put in place what I would now call controlled challenges. I got myself a very small business editing videos for my art school colleagues. This helped build my confidence. Then I got a job collecting money for an AIDS charity – ethical AND confidence-building. In 2004 I enrolled in a course for autistic people that would enable us to speak to schools. At this course I met autistic author and all round legend Polly Samuel. Polly became my mentor and supported and encouraged me to write my first book. It was published – at the time this was the most exciting thing that had ever happened to me. What’s more, having a book gave me that final surge of confidence that I needed to apply for professional jobs.  Three months after the book was released I applied for two graduate roles in the public service. I was successful and my world changed more radically than I could ever have imagined

The first thing I noticed about having what for me at the time was a high level job was that I had a lot more money than I had ever had before. My income more than quadrupled! Another thing I noticed was my attitudes. Before I got my job I wouldn’t go into a high end clothing store as I was pretty certain that the staff there would judge me and be rude. I actually had an experience like that when I was poor – my glasses broke and I needed to get a minor adjustment to fix them. I walked into an optometrist shop and asked if they could fix it and the shop assistant said ‘you will have to pay you know’ leaving me feeling very ashamed and angry.

I have been off benefits now for 15 years but I am still acutely aware of what life was like when I was poor. The thing that gets me is the lack of choice and personal power which poverty causes. I also get some grief and assumptions about my income now, mostly from health professionals. Because I have schizophrenia I need to take specific medications which cannot be prescribed for any other conditions. The medication I take ‘outs’ me to people in the know. The number of times I have been prompted to advise that I have a concession card when I go to pay at a doctor’s or pathologist’s and prompted again is quite large and always really annoying. I often say ‘I am a schizophrenic public servant. There are actually lots of us!’

As someone with a secure job and steady income I do feel a bit like I am part of the problem rather than the solution due to my general middle classness and being much more bourgeois than my socialist teenage self would have tolerated but from a personal perspective it is lovely being financially independent. I am really proud that I have made the life I now have work because I recognise that mine is an unusual journey. I am a rags to riches Yennski. I don’t ever want to become entitled and to be so privileged around income that I lack empathy with people who do not share my fortune. I don’t believe in the deserving and undeserving poor and I definitely don’t think poor people should just ‘get off their butts and get a job’. I know how hard it is being poor and having all the barriers that exist to contend with if you want to take a different path. 

Yennski at work in 2013

Flipping those negative messages – Reframing misconceptions about autism

As an autistic person I have witnessed a lot of misconceptions, myths and micro-aggressions around autism. I want to flip these around with a positive spin. These are all things I have heard said about myself or another autistic person. They are not dreadfully helpful and perpetuate poor attitudes about autism and autistic people. Here goes…

The first one is ‘my child is obsessed with the hand dryers in the bathroom.’ What the parent actually meant was that their child found the noise of the hand dryers overwhelming. Being in the bathroom was a sensory onslaught for this poor kid who was trying to get their parent to help them without much luck. I suggested to the parent that they take their child to the accessible bathroom so they wouldn’t have to hear the offending technology. ‘Obsessed’ is also a fairly mean word which is often used to describe an autistic person’s passionate interest. An obsession has quite negative connotations but for those of us with the delight that is an autistic passion it is actually a very positive experience and one that happily engages our full attention. It is one of those instances where autistic people’s experience is viewed in negative terms even when it is actually overwhelmingly positive like a passionate interest.

Another response I have struggled with is that autistic children somehow play ‘wrong’ such as lining up their toys. I think that unless the child is being aggressive and destroying things then there is no ‘wrong’ way to play. Everyone plays differently and what is to say that lining up toys is ‘wrong’ but role play with dolls is ‘right’? Has anyone ever been hurt by a child lining up their toys? Probably not. However trying to get a child to play differently because they are lining up toys may well have a negative impact on that child.

Another statement I heard in a conference once was an academic speaking about a study they were doing with autistic teens. The speaker said ‘he is very resistant to using the phone.’ Fair enough I guess but what worries me with that is the way the autistic person is pathologised. If the person was allistic I imagine the language used would have been very different. They probably would have said ‘they don’t like using the phone.’ When a lot of people talk about autism – and disability more broadly – they use language which perpetuates a negative view and sees everything related to that person as a pathology.

Another one is saying an autistic person is a ‘fussy eater.’ There are many reasons that autistic people avoid certain foods. Often they literally cannot eat the food without vomiting. To say someone is a ‘fussy eater’ has a few issues, mainly that fussy implies a choice. It is also quite critical. An autistic person with sensory aversions to food does not actually have a choice. They really cannot eat that thing. I know this because I have been accused of being a ‘fussy eater’ myself.

Another criticism levelled at autistic people is that we are ‘blunt’ or 

‘rude’. In fact autistic people just have a different approach to communication than allistic folks. We ‘tell it like it is’ and often view being tactful – apparently the default setting for neurotypical folks – as being dishonest or lying. What we say is what we mean which can be disarming for allistic filks but it is just how we are. Rather than trying to force autistic folks to be tactful maybe the world needs to lean more about how autistic people approach honesty. It really is just another way of being. 

Autistic people can be criticised because they do not work or engage in further study. Far from being lazy we are often desperate to study or join the workforce but structural and other barriers exist which make it very tricky for us to find and keep a job. 

I was once told that a relative didn’t like talking to me because apparently I ‘stared right through him.’ This was really hurtful especially as my own Yennski version of eye contact is not something I can help.  Autistic people often don’t do eye contact or do it differently to others. It is not us being rude or aggressive and it doesn’t demonstrate that we are dishonest. It is just how we do it.

Finally, the one which most of the bullies in school told me and which periodically crops up… ‘you’re weird!’ Weird is usually seen as an insult. Most people don’t want to be told we are weird but what it actually means is that we approach life differently. We are quirky and interesting. We are unique and original. So I might finish this post on flipping negative statements about autism by reclaiming weird. ‘I am Yennski. I am weird, proud and different not less’. 

‘Let’s agree to disagree…’ Learning to manage conflict and build assertiveness

Content warning: bullying, prison

I am the first to admit that I don’t do well with conflict. I was not really given many examples of effectively disagreeing with anyone as my household was pretty agreeable when I was a child. I think I have only seen my parents argue once and when it happened I assumed they would get a divorce! Conflict simply wasn’t part of my home life as a child.

I was bullied a lot in high school. I never disagreed with the bullies or stood up to them. In fact I would try to appease them by being friendly and offering to do things for them. This only served to make me more of an outsider in their minds and things just got worse.

Between the ages of 20 and 25 I spent a lot of time in prison (if you want to know more I wrote a book about it – ‘Finding a Different Kind of Normal’). There was plenty of conflict going on in jail and I was – rightfully – utterly terrified for my safety every day. I managed being in such an aggressive and dangerous environment by appeasing everyone else and being extra nice to my fellow prisoners. On one occasion I asked my parents to sign out $500 to the boyfriend of a prisoner who bought drugs and got them in. I was supposed to get a significant amount of weed and pills but I actually got almost nothing while half the jail had a party at my expense. True to form I did not stand up for myself fearing a fight. I managed to spend over three years in jail without getting attacked by any of my peers. I did this through a combination of buying cigarettes and other treats for my fellow prisoners, never standing up for myself and masking like it was an Olympic sport! My aim was to avoid conflict at all costs. I was very good at it! In fact I was so good at it that I ended up having no idea who I actually was. When I was 26 I decided to change my life and I had to work out what my character was as I had lost it somewhere amongst all the masking and trying to appease everyone!

Along with my fear of conflict was an inability to set boundaries or be assertive. This is also a huge issue for many other people and especially autistic people. I have worked on this over the years and am now doing a lot better. I even learned a nifty trick which can help with stranding up to bullies. During a hospital admission in 2010 there was a fellow patient who was being a bully to me. I told the nurses and they said I should stay out of her way – not very easy in a small locked ward! I was terrified of this person and did try to avoid them but it didn’t help much. Eventually I was in the  queue to use the hot water urn and this woman pushed in front of me. Angrily I snapped ‘You don’t have to be so aggressive!’ at her. The impact was immediate. She went from bullying me to wanting to be my friend. I learned a lesson there that sometimes if you stand up to a bully it changes the power dynamic and means they respect you. I know, bullies are baffling! It was a useful lesson though and I have put it into practice since with similar results.

Conflict is scary. Assertiveness is scary. Setting boundaries is scary but all of them are a part of life and we cannot avoid them forever. Assertiveness is a great way to get your needs met. I was a taught that being submissive  or aggressive both mean you will not get what you need but being assertive gives you the best chance to do so. However, being assertiveness is not a guarantee that you will get your needs met. Assertiveness works best when employed in communication with reasonable people. Assertiveness is less likely to work with a bully or an aggressive person. One of the lovely things about assertiveness is that you get to state what you need. It is a great piece of self-advocacy but it can be hard too do, especially when you start out doing it.

I used to think it was impossible to learn to be assertive. I could not imagine a situation where I would be able to do it. Then in about 2013 I started to make inroads into assertiveness. Firstly I practiced with ‘safe’ people like close friends and then worked up to others. I remember being very proud of myself for doing a follow up with the people who were painting my apartment and were taking a long time get started. It was amazing! I was being assertive. It is a skill that improves with time and I would recommend starting out with people you know and who you are fairly certain will respond well and respect you and work form there.

I used to be terrified of conflict and disagreement but now I recognise them as just another part of human communication. And if I disagree with someone and they respond badly well that is their business, not mine. As an activist and advocate I actually need to be able to manage conflict as people often disagree with what I say. There is a difference between respectful disagreement and trolling. I can’t just block everyone online who disagrees with me! That being said the trolls get blocked with no warning as I need to stay safe and trolling is a form of conflict that I am never going to address – even if I use all the assertiveness at my disposal! 

I’ve had enough now –  Thoughts after two years of COVID  

Content warning: COVID

In 2020 when COVID started I was in hospital for my longest ever single admission – 4 months. I saw the news about a cruise ship and some new illness. I assumed it would all fizzle out and not be much of an issue. Not long after that I went to the hospital cafe. I was puzzled. They had removed all the tables and chairs and put sticky-tape crosses on the floor for people to line up behind to ensure social distancing. ‘This is serious’ I thought. The chief doctor held a meeting every morning. Her statements were increasingly terrifying. My biggest worry at the time was not catching COVID but being discharged before I was ready due to the hospital ward being repurposed for COVID cases. Life with COVID was initially very disturbing and stressful for me – the uncertainty around the disease alone had a big impact.

Over time things became not quite business as usual but I became used to living in a dramatically changed world. At first I thought it looked like we were in a totalitarian society with curfews and restrictions on travel. An outsider looking at our society would almost certainly think we had a hardline government which didn’t like its citizens very much. It was interesting that the restrictions were actually related to keeping people safe. 

The anti-vaxxers and conspiracy theorists took things to a whole new scary place. To my mind they are risking people’s lives and threatening all of us with their paranoid nonsense. I have schizophrenia so know a little about paranoia except for me it is part of a pathology not a conscious choice to be, well for want of a better word, to be a dick.

People now talk about the ‘new normal’ of COVID. I don’t think it will ever be normal. The situation were are in is extraordinary. Some people say ‘we are all in this together.’ While I understand the sentiment I actually disagree with that on a few levels. I think we all face the threat of ourselves or those we love contracting the disease and the disease itself is the same pathogen but other elements of experience mean it impacts on us differently. An autistic person and a neurotypical person for example will probably have different issues with COVID. There are cultural and socio-economic issues around COVID too. I know a transgender person who spent the entirety of lockdown having to live with  their transphobic parents who were anything but supportive. That is a very different experience to when I was quarantined while staying in a mental health service with supportive staff. ‘We are all in it together’ is not really a very helpful statement.

For autistic people there are some specific issues around COVID. The one that gets me is the test. I have had one COVID test and it was horrific. I want to avoid ever having to do that again but understand that I will probably need to have another one at some point. The sensory onslaught that is the test was traumatic. Other issues for autistic people include the isolation which quarantining can involve and the uncertainty and fear around COVID.There really are no answers at this point. Autistic people really like answers and there is almost nothing we can pin down with COVID. The information changes every week, be that around vaccinations, travel restrictions, wearing masks and a myriad of other issues all which can cause extreme stress for autistic folks.

And yes, masks. Masks can be a nightmare. In Australia where I live autistic people can get an exemption from wearing a mask. This seems to be a great idea. The problem is that people are so judgemental if they think someone is doing the wrong thing through not wearing a mask that they can be really abusive. Even if people don’t respond badly many autistic people are concerned about potential judgement from others that they wear a mask even if it is sensory hell to do so. 

I actually don’t have any nifty Yennski answers to these things. I really hope COVID ceases to be an issue but I don’t know what will happen – nobody does. The vaccines are good even if they don’t completely stop the illness. Maybe there will be improvements in the impact of the vaccines. I am a strong proponent of vaccination for everyone who can have one. Maybe the COVID virus will mutate itself into something less harmful. Maybe what we have now is what our long term future looks like. Maybe the impact of lockdowns, fear around the virus and restrictions will result in a generation of people who have significant mental health issues who otherwise wouldn’t have them. Maybe so many people will experience ‘Long COVID’ it will impact on the ability of society to function in the way it has in the past. Although on a positive note, maybe flexible working arrangements like working away from the office will be available to those who need them.

I hope the future is more hopeful than things have been in the past two years.  I have had more stress from COVID than I could imagine and I am far from alone in this. We don’t know a lot of the impact yet but I hope the world recovers and then maybe we can take some hope away from this difficult, stressful, uncertain age. 

Saying no, setting boundaries and avoiding burnout 

Content warning: Mental health issues

Today is New Years Day. Happy new year and so forth! One thing which marked my 2021 and which I don’t care to repeat is suffering significant burnout resulting in some very dire circumstances in July-August. This year I am determined to avoid that happening again but sadly it doesn’t seem to be that simple. 

Last year I gave 42 presentations, wrote two books, did a bunch of consultancies and media interviews and also worked 34 hours per week in my day job. Why did I do all this? Well there are several reasons really. The first is simply that I enjoy my advocacy work and writing. It is hard to decline an offer to do something I enjoy and which is meaningful to myself and others. Another reason is based in my history as an advocate. I wrote my first book in 2005 and for many years there was very little interest in what I was doing. As such I wanted to boost my public profile and reach a larger number of people. For this reason my default response was to say yes to everything for many years. This works really well until you actually have a public profile and more people want you to do things than you have capacity to do.  Forty-two talks in twelve months really is too many! The final reason for my burnout is that I really, really struggle to say no and set boundaries.

My good friend and coauthor the most excellent Dr Emma Goodall once gave me a highly useful contraption: A buzzer which says ‘NO!!’ loudly in several different ways. I love this. Not only is it funny, it is helpful. When someone asks me to do something I would prefer not to I simply press the buzzer and then decline politely. Saying no is really difficult though. I struggle with assertiveness and boundaries but they are very useful ways of avoiding burnout. I am a person who has experienced significant trauma and mental health issues. These things tend to make it even harder to set boundaries. I also have some pretty significant imposter syndrome so worry that if I decline an offer of work that nobody will ever want me to do anything ever again as a result of me apparently knowing nothing about anything! Yes, in my brain I have nothing useful to say and all my books are due to luck and publishers who feel sorry for me. (No seriously – this is how I approach my work. Very annoying really and quite persistent – and not impacted by logic and reality for some reason.)

Burnout is a big issue for many people and it can be dangerous. When I was burned-out out in the middle of last year I actually ended up in hospital and spent a month there. This was actually good in some respects as I didn’t have my laptop so had a forced period of downtime! Downtime, saying no and simply stopping seem to be the best strategies for addressing burnout. Other than avoiding it in the first place which is by far the best strategy in my mind – and one I have struggled to implement! Sometimes you just need to stop but the kinds of people who are particularly prone to burnout can really find that hard. We fool ourselves that we HAVE to do the work and that if we don’t do it the world might end or we will lose our job or whatever and then end up in a worse position anyway. 

Autistic and other neurodivergent people can face significant issues with burnout. Our anxiety is frequently very high and we are often perfectionists. We are often high achievers too – all of which can feed into issues with burnout. There is something even more significant around burnout for autistic people and that is living in a mostly neurotypical world where we are expected to mask. Masking and camouflaging can take all our energy and then on top of this comes all the stress, workload and expectations. We also often have alexithymia or emotion blindness. This means that we struggle to be aware of what emotions we are feeling. It does not mean we lack emotions but that we can find it almost impossible to articulate what our emotions are. We might be overloaded and stressed but not be aware of it. This means that we do not initiate downtime or limit stress because we cannot feel things escalating. By the time we are aware of it things have got out of hand. Interoception is another issue which feeds into burnout especially for autistic folks. If you are unaware of what is happening in your body this can add to stress and feed into burnout. All this means autistic people can get from apparently feeling OK to being burned-out very quickly. 

It can take a long time to get over an episode of burnout. My best strategies to mitigate it are taking regular downtime – I ensure I take at least an hour a day of doing nothing with an output. Another handy strategy I use when I can is to decline any activities which cause significant anxiety whenever they are mentioned or I think about them – although sometimes such things are necessary. If you do need to do something stressful then put in place activities that relax you and that you enjoy to offset it. An autistic friend once told me I suffer less from burnout because I don’t really mask. I am 100% Yenn when around others. I guess that helps too because I am not pouring my limited energy into trying to act like the other humans but many autistic people find it very hard not to mask as it is a survival strategy. Building in ‘stop’ time before you actually get to the level of burnout can help too. If you can spend a weekend doing something you love that does not cause stress.

Burnout is a constant risk for many of us but it can be managed. And I recommend the NO! buzzer 🙂

How my wonderful parents saved my life and busted some stereotypes along the way

I was recently home for Christmas with my parents. My parents are probably my favourite people in the world. In fact I said to my mum that if my parents were cats then they would be on a par with Mr Kitty in terms of my love and Mr Kitty was the person (albeit a cat person) who I cared about more than anyone. 

So why do I love my parents so much? Well you wouldn’t think I wold love them. When I was a kid they were members of the Christadelphian church, a conservative church which disagrees with most of the things about me that I am proud of. As a teen I joined the socialists and argued with my dad pretty much every day. I moved out of home at 17, became a criminal and drug addict and did some dreadful things. I spent the years 1994-2000 basically in and out of psychiatric hospital, jail and residential services. At the time I did not like my parents. I was embarrassed by them and thought they were conservative and responsible for my issues. This was in fact a long way from the truth. My parents were simply always there. They visited me every month when I was in prison. When I finally decided to turn my life around they were supportive. When I was released from prison for the final time they were very visibly there for me.

I remember my mum saying that the first time I went to jail in 1994, when they were extremely shocked about what happened that they stayed with my mum’s step mum and her mother. My mum’s step grandma apparently said if her child had given to jail she would move to Peru! My mum’s step mum said ‘She actually would have!’ Thankfully there were no movements to South America and instead there was lots of kindness and support for errant – and at the time very defiant – Yennski. 

In 2000 I made some major changes in my life. I started seeing my parents differently. I noticed how caring and supportive they were. From February – September 2000 I was living in residential care for people with mental illness. I went there straight from prison. My mum and dad took me from the prison to the new place which took a couple of hours. Everything I owned was in a cardboard box and a plastic garbage bag. Over the next few months my life got better. I learned some mental health strategies and decided I wanted to change my life. My parents went overseas in about June and came back with so many gifts for me. I was overwhelmed. 

I retained some negative thoughts about my family for some years, mostly embarrassment – a hang on from my teen years and early adulthood but mostly I started to see my parents for what they were.

So what are my parents? They are still very Christian. As a transgender person who has received a lot of bigotry from Christians I can be wary but my parents are not in any way bigoted or judgemental. I said to my mum yesterday that a lot of transgender people struggle with Christmas because their families are hostile and bigoted and she was genuinely horrified. My mum says I have educated her about gender identity and sexuality and that this is a good thing. Even when I came out as a lesbian at the age of 16 in 1991 my parents weren’t hostile. More surprised I think. I like the idea that my mum finds me educational and is willing and receptive to being educated on such matters. 

I see my parents as being one of the key elements in my own change from desperate prisoner to who I am now. They went through a lot of trauma because of what was happening in my life but they kept coming back for more and stood by me at a time when pretty much everyone else had given up on me. My parents are largely responsible for my survival and now they get to brag about all my accomplishments. There is nothing quite like seeing my parents proudly telling friends about my various achievements – not so much for the reason of self-congratulation but because for many years there were no Yennski accomplishments. Any conversation about me was probably very sad and negative. It has been a difficult road to get where we are now but my relationship with both my parents is very positive and comes from a place of mutual love and admiration.

So thank you Yennski’s mum and dad. You are the absolute best and thank you for helping me to change my life and standing by me when nobody else was. I owe you the life I have now and that is a good thing.

Photo credit to my dad. This is us having lunch at a winery

Proud to be different: or why neurotypical people baffle me 

I went to my work Christmas lunch last week. It was lovely and also quite enlightening… The reason it was enlightening was that I noticed something I have never really articulated before. We were playing a game where the organiser gave out cards with the name of each team member on them. The organiser read out a question and we had to hold up the card for the team member who was most likely to do something. For example ‘Most likely to get sunburned on holiday’ and colleagues holding up the corresponding card for the person most likely to do this. All my colleagues tended to pick the same person for each question. I however did not. I don’t think I picked the majority person once! Most of my colleagues are neurotypical and what I was seeing was the thing where autistic and neurotypical people do not see things the same way. It was very interesting.

I also realised the other day that I am quite different to my colleagues in other ways. I sometimes wonder what they think of me and imagine it is something like ‘strange but nice’. People often say I am very honest which seems odd to me as honesty is never intentional. It is just how I approach the world. It is my default setting but apparently that is odd. I find myself doing things that I imagine others think are unusual but I don’t really mind.

Being among mainly neurotypical people is the norm for me. I love that notion of autistic space where the company you are in is all or almost all autistic. In autistic space I don’t have to worry about people misinterpreting my actions or statements as we are all a lot more on the same wavelength. I wish autistic space was all the time but sadly I have only really experienced it a handful of times. Because they are the majority I think neurotypical folks just assume that anyone who communicates differently to them is doing it ‘wrong.’ This is problematic. We are not communicating ‘wrong’, we are simply doing it differently.

In fact I find neurotypical communication baffling. I don’t go around telling them they are doing it wrong but a lot of what they do and say is confusing. Think unwritten social rules. These are everywhere and neurotypical folks seem to pick up on them as if by magic whereas I wonder how such a thing could exist and how people can tell it is happening without being given any advice or instruction. And small talk! Seriously people why? There must be a reason I guess or people wouldn’t do it but if I am talking about the weather it is because I have an interest in meteorology! I always forget to do small talk and launch right into philosophy, art or advocacy – much more interesting than the weather. I also find operating on more than one level confusing. And even worse is when people assume I am doing that too and judge my motivations as if I were communicating the way they are. This usually results in me being judged even when I am not doing whatever I am accused of.

Autistic people tend to be very different to neurotypical people. This is not a failing or a negative but it can become a problem when assumptions are made that we are doing things for the same reason that neurotypical people would be if they were doing the same thing. We get accused of being rude, blunt, disrespectful, lacking in empathy and being ‘crazy’ and a whole bunch of other things while in reality we are just approaching the world from a different standpoint. 

The idea of ‘different not less’ – an oldie but a goodie – is relevant here. Autistic people’s understanding is just a different understanding. When people judge us as if we were neurotypical then of course they will come up with a load of judgements and criticism. It is essential to understand us as valid autistic people and meet us as we are, not as we are assumed to be. And if I played the game at the work lunch again with colleagues who were all neurodivergent then I suspect I would get most of the questions ‘right’. 

My own quiet rage against the machine – thoughts on institutional care 

Content warning: Mental illness, institutions

I am autistic, ADHD and have schizophrenia, generalised anxiety disorder, depression and post-traumatic stress. As a result of this – and other factors –  I have spent almost ten years of the 47 years I have walked the Earth in an institution of one sort or another. I did the sums recently and I must say I was rather surprised. Over 20 per cent of my life has been spent in institutions of varying degrees of malevolence and kindness.

I used to have a lovely psychiatrist called Dr Lean. One time I was talking with him and reflected that if I had been born 30 years earlier, as a person with schizophrenia I would probably have been permanently in an institution for mental health. Dr Lean then said something which chilled me to the bone. He looked at me and slowly said ‘yes. You would have been in the kitchen because you are reliable.’ In that moment I was in that institution in the 1960s. Yenn the author would have been dishing out meals, safe, cared for (if they were lucky) and completely lacking any ability to do the things they loved. Of course for others with schizophrenia and other mental illnesses and also neurodivergences and disabilities they are often denied the opportunity to be engaged in activities which are  meaningful to them even now but the asylum example just shocked me. There was a New Zealand author called Janet Frame who had schizophrenia and was in an institution long-term. This was in the 1950s. Janet Frame found out she had won a literary competition literally days before she was due to get a lobotomy! Thankfully in the light of her authorial prowess they did not go ahead with it but how many people that didn’t write prize-winning novels were damaged and maimed in ‘caring’ institutions? A fair number is my understanding. 

In my own experience I got stuck in institutions. Moving from prison in 1995 to hospital and back to prison and residential mental health care services over five years I now consider ‘lost’. I was very institutionalised especially in prison. There were a few reasons for this. One was that I hated myself and wanted to suffer as much as possible and be as hated as possible (Yes, I changed!) The other was responsibility. I grew accustomed to others doing everything for me – making my decisions, telling me what to do, that sort of thing. I was very unwell and it was easier. The other was the the institution felt somehow safer. I knew all the people, the physical environment, the staff and the routine. I think this is something autistic people can find alluring about institutions particularly. I never needed to decide what to do. It was quite liberating in a way and I admit that when my mental health is misbehaving now I often want to be in hospital because ‘adulting’ is just too hard.

I am not free of the institution even now and I don’t think everything about institutions is bad. I do think some institutions are quite malevolent, particularly in the justice space – and I do think institutions can breed institutionalisation. In the past 21 years I have not been a prisoner thankfully because it is as awful as you might imagine – fearing for your safety every day and being in an environment with people who can be violent and being at the mercy of the staff, some of whom are nice and others not. However since 2001 I have been in a lot of psychiatric hospitals and residential mental health services. When I am really unwell I sometimes find this helpful and sometimes not. Some services and hospitals are better than others. While in the past I wanted to have no choice and control, I now find that removal of control and responsibility in hospital problematic. This depends on how unwell I am and if I am in that border between needing to have choices made for me or  being further along in my recovery and wanting to take charge it is problematic. I also find psychiatric hospital triggers my memories of jail, many of which are very traumatic.

For autistic people institutions can have very little idea both how to support us. Ignorance of autism is a huge issue in mental health settings. I had the parent of an autistic young man contact me a few years ago. The man was in a forensic mental health facility and was not allowed to leave. He had sensory issues in the institution and couldn’t articulate this. Every time he got sensory overload he would have a meltdown. This was interpreted as wilful bad behaviour and his time in the facility would be extended. It was a perfect storm for awfulness and it was simply a lack of understanding of autism and the significant issues in not giving a non-speaker access to appropriate communication devices. As is so often the case the problem could be reasonably easily fixed with a little bit of understanding and listening but often the opposite happens and autistic people and our families suffer due to the ignorance of those who are supposed to be caring for us.

I am actually quite proud of myself for escaping the would of criminal justice settings and long term psychiatric care. With mental health services there is obviously nothing wrong with accessing help and I would encourage it if people need to access it. However I have found myself a lot happier now that I am not actively seeking a way out of having control over my life.  

Who am I? All about identity 

When I ask the question ‘Who am I?’ I get quite a few thoughts, as I imagine most people probably do. Identity is not quite as simple as that though. Identity is bound up in politics, social expectations, diversity and self-knowledge. Identity is a very complex thing.

When I unpack my own identity the first place I go to is the diversity-type groups I am a member of.  I am neurodivergent – and within that identity I am Autistic and ADHD. I am a Disabled person – the most significant one of those being my psychosocial disability, my schizophrenia. I am Queer and within my Queerness I am asexual and non-binary. And within my non-binary  identity I am agender. I am a person with a lived experience of poverty, social housing and accessing crisis support. I am an ex-prisoner. I am also white and (currently) middle class. I suppose these sorts of identity could be called intersectional identities. My identity also includes being an author, a public servant, a cat lover and a fan of shiny things. 

My intersectional identities feed into my deeply-held personal identity. For me as an advocate these things are particularly important as they connect me to others and allow me to understand where other people in similar groups are coming from. They are also extremely personal and  a key part of what makes me who I am. 

In terms of my neurodiversity, Autism and ADHD are deeply ingrained parts of my character, my very being. Without Autism and ADHD I would not be Yenn. They are not things I can remove from myself and I actually quite like having them even if they can cause some issues. I am proud to be autistic and ADHD and I feel a very strong connection with my neurodivergent peers. In terms of my schizophrenia it is a different approach. While schizophrenia is also a big part of my life I actually do view it as an add-on. It is something I would gladly remove if I could. It makes my life challenging and has put me in a lot of dangerous and frightening situations over the years. So while it is also a key part of my identity, it is also something I don’t really embrace. It’s complicated!

My Queer identity is something which makes me want to dance down the street. Coming out as non-binary was one of the most incredible things I have ever done. I immediately embraced my non-binary identity. I am so extremely proud it is almost palpable. I LOVE being Queer and I have identified as Queer in one form or another since I was 16. My Queer identity is my crowning glory. I love it and treasure it.

Then there are my privileged identities. I don’t like these and I remember as a child not wanting to be white because I was studying history and learn gin that white people did some really dreadful things like imperialism and slavery. However, being privileged is not a sin and people cannot help it. I cannot get rid of my whiteness but I can be an ally for others and most importantly I can challenge my privilege and learn from the experience of People of Colour. 

One thing about identity is that other people often have opinions about ti which they shouldn’t really share. I always say that the way a person identifies is their own. This stuff is totally individual and it is not up to anyone else to say how you should identify. Identity belongs to the person whose identity it is and no-one else. One issue I often get is people saying ‘you shouldn’t say you are autistic. You should say ‘person with autism.’ Um no. Big no. Saying ‘I am autistic’ is called identity-first language and it is perfectly appropriate. It goes to my point about about owning neurodivergent identity. And some well-meaning person telling an autistic person how to identify? Well to my mind that is ableism so just don’t do it!

Gender identity is another area where people can be very unhelpful. I always figure that most people have two boxes for gender in their mind, the boy box and the girl box. Whenever they meet someone they mentally put them in one of the two gender boxes. Trouble is that a lot of people don’t fit in the boy or girl boxes and there are a myriad genders, not just two! So when someone puts me in the gender box (usually the one marked ‘girls’) I get very annoyed and upset. You cannot tell someone’s gender identity by looking at them. (That point goes out to everyone who has called me a ‘lady’ or ‘girls’!)

Identity can be uplifting and liberating but it can also be invalidated by ignorant – and sometimes downright bigoted – people. If your identity includes some intersectional groups then cultivating a sense of pride is a good thing to do. It can also be great to connect with others who share some of your experience. If your identity includes some privileged type groups then try and include some allyship for those in intersectional groups in your life and educate yourself.      

enn at Mardi Gras 2019

The trouble with inspiration and disability 

I am a person with multiple health conditions, neurodivergences and psychosocial disability. Some of these are acquired and others I have had since birth. I live a fairly busy and accomplished life which puts me into the position of being viewed as ‘inspiring.’ In the disability world being inspiring is generally viewed quite negatively. This is why…

There was an amazing media personality and disability activist called Stella Young who sadly passed away a few years ago. Stella gave one of the best TED talks I have seen which has rightfully been viewed millions off times. It was all about the concept of ‘inspiration porn.’ Here is a link in case you want to watch it – and I recommend you do. https://www.youtube.com/watch?v=8K9Gg164Bsw

The idea of inspiration porn is that disabled people are viewed as being ‘inspirational’ or ‘brave’ simply for doing things that we do every day. It is very icky and I don’t think anyone enjoys it. I had someone amazed that I could take the bus to work. This baffled me a little as I would imagine the ‘inspiring’ piece in my going to work would be more likely to be me being able to work in a middle management level in government administration but no, apparently I was worthy of inspiration for getting on the bus! 

I think that inspiration porn is at its heart paternalism. It is very cringeworthy and I never know what to do when presented with it. Paternalism around disability can be more than annoying through. It can – and frequently does – hold us back. In the workplace many Disabled people are stuck in low level jobs because people think we are unable to do anything else. There is the notion that even having a job should make us grateful and why would we want a promotion? Paternalism is more than just irritating, it limits our opportunities.

Another related concept is that we are ‘brave’. This is another paternalism-related thing I think. Firstly I am not brave. I have to live my life with disabilities. It is not a choice. ‘Oh but you are so brave’ is a really unhelpful statement. Living my life does not require bravery. Everyone has challenges but do they get called ‘brave’? Well, not usually unless they have a disability of health condition. There is a whole load of language which only gets used when describing Disabled people. This is not OK and also holds us back. 

I have been the ‘colour and light’ at more events than I care to mention. I have spoken at events where the non-disabled ‘experts’ have been paid and I haven’t, like it is an honour for me to speak but for the other experts it is their business.These days I refuse to do event like that. They usually involve the ‘experts’ presenting research and the Disabled speakers talking about our life story. Now I enjoy giving a life story talk but not when the organisers’ view is that my life story is the only expertise I have. 

I remember speaking at an event a few years ago. I had bought along a selection of my Yennski books. One of the attendees asked me if I wrote one of my books and that I must have had ‘help.’ Apparently the book was too long for an autistic person to have written! Go figure. As a Disabled person my capability is called into question all the time. It is not ever OK. I am very bolshy these days and will challenge unhelpful attitudes but many people are not as bolshy as me and feel ground down by these unhelpful comments and micro-aggressions.

I have another, personal issue around inspiration porn which is that some of my life experience is in fact genuinely quite inspiring. I overcame being a prisoner many times over, being long term unemployed and having major addiction issues to being the Yennski I am today. These things probably actually ARE inspirational so I need to separate the inspiration porn from the genuine inspiration! So when someone sys ‘you are an inspiration’ I can struggle to figure out whether to be thankful or annoyed!

Basically Disabled people are not inspiring for just living our lives, paternalism helps nobody – and is really infuriating at best – and firefighters are brave but I am not! It seems to me that this should not have to be so difficult. And check out the Stella Young TED talk!