It’s OK not to be OK

Yesterday I won an award. Yay to that. It was an award for lifetime achievement in disability advocacy. As I walked up to the stage they read out a bunch of my various achievements. I have quite a lot of them these days. In fact my complete advocacy CV is 26 pages! The interesting thing about this is that I am currently an inpatient in the psychiatric ward and have been for the past six weeks. I was on leave to attend the awards. I felt totally overwhelmed and emotional most of the evening and found it very difficult – wonderful, but difficult. In my speech I talked about how it is actually OK to not be OK. I am an overachieving advocate AND someone having a really tough time and that is not only OK but quite common for those of us in the disability advance space.

Leadership for Disabled people often involves a fair amount of not being OK. The issue is there is an expectation for us to push through, to put on a mask of being super people and being able to do everything and when we are not OK to dismiss it. I have done this for years and I can say it is not only unhelpful but it is dangerous.

On Tuesday I was set to be part of another event. I was meant to MC the National Awards for Disability Leadership. The organiser had put in place measures to ensure I was supported – namely a co-MC who could take off the pressure. The co-MC ended up taking off all the pressure as I cancelled. It was a really hard thing to do. I felt like I was letting down the organiser and felt guilty but I knew if I had done the gig I would have not done a good job and it would have had a negative impact on my mental health. So I said no and it was absolutely OK to do so. This was a liberating experience and I think actually demonstrated some good leadership despite conventional wisdom saying that my cancelling was ‘failure’. 

This last six weeks I have had to tell a lot of people and organisations that I cannot do things due to being unwell. The world has not ended. My reputation as an advocate is still intact and I even still have 10,000 followers on my Facebook page! I simply told people that I was unwell and unable to do the various things they had asked me to do. Maybe some organisations I cancelled on will not book me as a speaker again, I’m not sure but it actually doesn’t matter. That has been an important lesson for me to learn.

Leading up to becoming unwell I was working the equivalent of two full-full-time jobs – my actual full-time job and a bunch of advocacy things. I now know that is not OK for me to work that much. I also know that others can do things and I don’t have to do ALL the advocacy things myself! I can decline something. In fact I am planing to adopt a Marie Kondo approach to advocacy and only do the things which spark joy. 

I was talking to a similarly overly-achieving friend facing similar issues about this and I said that we needed her to be around to be a leader. Burnout for many if us can be life-threatening. We need to stick around to make a difference and not run ourselves into the ground overworking and taking on a bunch of responsibility. It is OK to say no and it really is OK to not be OK.

People with disability – and especially leaders in the community – often feel we need to prove ourselves and demonstrate that we can do EVERYTHING. It is actually helpful to ditch this attitude. We come with great strengths but we shouldn’t have to somehow convince others that we are superhuman. Accessibility is about having the right supports in place to do what we do rather than glossing over times when things are tough.

It really is OK to not be OK. I think this is an important message for everyone. It is one I have needed to heed myself for some years. Rest assured that I will be keeping it front and centre of my thinking and I will say ‘no’ when I need to say no. I am not ashamed of being not OK. It is part of me and it really is OK.   

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Taking your power back: Advocacy and personal power

Yesterday I took my power back. I woke up saying to myself ‘I will get better, I will go home and I will take Mr Kitty home.’ Not big statements in the scheme of things but for me at this point in my life that was one of the most significant statements I could have made. Some context: I have been in the psych ward for a month and have been having one of the hardest admissions I have ever had. My mood has been so low that I get to a point where I am so sad I don’t care what happens to me. Cue verbal aggression and emotional outbursts and a lot of threats by hospital staff to send me to the less pleasant hospital across town if I do get a handle on things. Until yesterday I felt powerless to the illness, I felt like I had no control over what happened and how I responded. Not so much the case now. I am the boss.

My powerlessness was not only about my illness though, it was also about the situation I am in – essentially an institutional setting in a society which discriminates against those with mental health issues. All these elements of power impacted on my ability to have my usual sense of personal power. It is nice to have it back that’s for sure but certainly not my ‘fault’ to have been missing it,

Personal power is an interesting concept. I used to be a revolutionary socialist and we didn’t talk much about personal power. we were much more interested in social power. Workers’ revolutions, strikes, that kind of thing, but oppression takes a toll on personal power as well and this is a huge issue for oppressed people.

Some people are so disempowered that they become aggressive and violent. The only power they can access is intimidating other people but this sadly serves to make them even more powerless and subject to institutional care. I often say violence can be the the last weapon a powerless person has and the only one they are aware of having. It doesn’t make it OK but it goes towards explaining it.

Most oppressed people do not respond to powerlessness through violence but through other ways – self-hatred, self-doubt, lateral-violence (where people criticise others in their communities instead of fighting the powers that be). Practical-type issues of oppression like unemployment and social alienation can also relate to a lack of personal power.

Our society and many of those in it is spend a lot of time sapping the personal power of oppressed people through bigotry, hatred, stereotyping, bullying, assumptions, discrimination and messaging about how incompetent and useless we all are. It is a hard thing to take power back in the face of all of this but it is possible.

Some ways of taking power back include

  • Advocacy and activism
  • Positive roles models from your community 
  • Positive representation in media etc
  • Gradually building your personal power through celebrating achievements, whatever those may be
  • Having events to celebrate the achievements of oppressed people
  • A sense of shared pride in your community
  • Having the opportunity to share your experience with allies and supportive friends

In the scheme of power, me telling my metal illness to eff off yesterday was pretty minor but I imagine it will have ripples into my life and maybe the lives of others, As an advocate having personal power is pretty essential. In fact this blog is an effect of my statement yesterday and I am hoping others will find it helpful and even that it might give them more personal power or the capacity to build theirs.

Personal power makes us bigger people. It makes us strong and proud and strong and proud oppressed people can change the world in a variety of ways, so yay to taking bacl your power,

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Mental health boo ya kick some serious butt Yennski! (Or a positive approach to recovery)

Content warning – mental health, self-harm, reference to suicide 

This is is a sort of Boo ya kick some serious butt -type blog post.

You may know that I have been in the psych ward for something approaching a month while I have been very unwell. My medications are being changed in a major way and it is messing with my sense of who I am. Yesterday was a low point in the past twenty years in that I started thinking like I used to when I was criminal drug-abusing destructive ‘Jeanette’ (as that variant of me was called.) Yesterday I wanted an end to responsibility. I didn’t want friends; I didn’t want a home or a job. I was self destructive and only very narrowly got to stay in this nice hospital and not have to go to the scary locked ward and only then because the nurses here and management are extremely kind and supportive.

I woke up this morning wanting death, I just spent the morning crying and wanting everything to disappear and leave me alone. I engaged in self-harm for the first time in many years. Yenn had lost their Yenn. Yenn was a broken person who just wanted to give up.

I am happy to say I do not want this any more.

I am a firm believer in the power of thinking and attitude. How we approach something can shape how we feel about it and today I set about in a pretty big effort of this. I slept lots and avoided anything stressful. Then I started to think about what I want. The thing that came fastest to mind was a new Whimsy Manor. I hadn’t been looking at real estate in while so had a look on Allhomes.com. And I enjoyed it. The properties there seemed available to me and this venture possible for the first time in a long time. The actual task of selling Whimsy Manor is that much less now that the kitchen renovation, which almost destroyed me, is now complete. I just need to clean the carpets and get the whole place cleaned professionally, then I can put it on the market.

Of course one element lies between now that that goal and this is my illness. I cannot sell a home from the psych ward so I need to recover, I need to get back to work, and I need to be able to live at home.

All these are Big Difficult Things but they are all things I have done before.

What do I have on my side to help achieve my goal of recovering, going home, returning to work and selling Whimsy Manor?

  • My friends and parents
  • Mr Kitty
  • My very positive attitude
  • My advocacy work meaning I am a positive human being who makes a good difference in the world
  • My managers and colleagues at work
  • The expertise and good will of a very professional hospital ward
  • A private psychiatrist who is available at short notice
  • 45 years of successfully being alive and learning lessons as I go
  • Compassion and empathy
  • An internal locus of control meaning I will take charge of my health
  • Self awareness
  • Assertiveness meaning I will speak up if I need to
  • I am realistic – things can get better or worse. It’s what you do from where you are at that matters,
  • I believe in myself. I have confidence in my ability to make change where change needs to be made
  • And finally, I like myself and want myself to do well.

I would by lying if I said I was 100% confident about this or if I thought it is inevitable I will recover quickly and things will all fall into place. But I do know that the positive approach am adopting is more likely to help me get to where I want recovery-wise.

I didn’t just write this to give myself some confidence, I wrote it because I think there is information here which can help others. So I hope it helped you too.

happy weekend,

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“Hi. My name is Yenn and I am a workaholic…”

There, I sad it! I’m not sure if there is a twelve-step program – it would probably be a very organized one if there was – but being a workaholic is certainly a ‘thing’ and potentially quite a damaging one at that.

Of course I never knew that. For years I have displayed my workaholic credentials like a badge of honor. ‘ “I have NEVER had a holiday’ I would say proudly. ‘I work every hour of the day, go to sleep then get up and do it all over again!’ I would say as it if were funny or impressive or something.

I have finally learned that being a workaholic can actually be very damaging. If you add that related quality of being a perfectionist it can become dangerous. This is what happened to me and it is the main reason I am writing this post from the psych ward where I have been for the past three weeks.

Yesterday I had the useful epiphany that I am a workaholic and it is largely a damaging thing, I started to reflect on how my life has been and how my need to cram every hour full of very productive minutes was not as helpful as I thought it was.

I would always privilege quantity over quality. So in my mind the opportunity to speak to 2000 people was always preferable to talking to a scout group of ten-year-old kids. I always had to be busy. Idle time was wasted time. In my youth I had a drug problem, I NEEDED to be stoned ALL the time, from the moment I awoke to the moment I stumbled onto my mattress on the floor at night I was high. My more recent overwork issue is similar. I used to joke that my downtime was when I went to sleep. I wasn’t stoned all day long but I was occupied all day long and occupied with activities that had an output attached! I’m not an expert on brain processes but I suspect the reward areas of my brain that were switched on by my smoking weed in my twenties were very similar reward areas to those switched on by getting a book deal or giving a talk,

Like many addicts I hid the magnitude of the problem from friends and family. Outwardly I was coping. More than coping actually. Kicking goals! Killing it! Changing the world! Rocking the Kasbah! But I was exhausted and stressed. I would find myself saying ‘I am so tired’ unbidden at the end of the day. My perfectionism added stress to the overwork so for the past few years I have been doing incredible things and gaining recognition and accolades while in a state of high anxiety and stress. Not Good Yennski.

I am writing this piece because I know other people have similar struggles. I know other Neurodiverse people definitely have similar struggles. If you feel you have little control over your life, as many of us do, perfectionism is tempting and helps us to feel in control. If our personal life is chaotic or we face bigotry and bullying, throwing ourselves into work can help us feel we are more worthy. As with any addiction, work can give us that rush of endorphins and that sense of joy we may not find elsewhere. For autistic people there is a additional bind which’s that we often really love a topic we are passionate people with passionate interests. My passion is autism advocacy so I actually enjoy putting in an 80-hour week because I love the work itself. How can to be a problem if it helps people and it is my passion? This can make addressing workaholic tendencies for autistic people very difficult indeed.

This is all quite new thinking for me. Normally in posts like this I will list a bunch of suggested strategies but I’m not sure I have any! I’ll have a go…

  • Just because something is productive and delivers an output – like work does – does not mean it is necessarily healthy
  • If you find yourself getting into work to avoid a problem in life that is a sign of possible addictive behavior
  • While human beings are primed to do productive activity, we need downtime too
  • Take breaks. This does not need to be an expensive holiday, just something that makes you feel relaxed and refreshed. If you cannot relax that is a sign you may well have an issue
  • It is always Ok to seek help
  • Be aware if your passions are not giving you pleasure any more as that might be a sign thee is an issue
  • Know that the line between being happily productive and a workaholic can blur over time, confusing us into thinking we are still happy and productive when in fact we are close to burnout,
  • Being a workaholic can appear as a good quality to others in your life, especially your boss!! It is actually often ignored as a problem because your work is benefitting other people, even if it isn’t benefitting you!

I am glad I have discovered that I am a workaholic and look forward to working on addressing the issue and living a more balanced and healthy life. I am going to start by saying no to things, lots of things! No, no, no! And I will continue by reminding myself – often – that I don’t need to do it all myself, I actually spent the first week in hospital pretty much sleeping continuously. Evidently I needed to. I had almost ten years of continuous work and perfectionism to undo. My biggest fear about stepping back from my previous workload is that I will turn into a slacker and lose my work ethic, which demonstrates to me that I probably still have a ways to go yet!

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The psych ward diaries: Power and The Institution

As you may know I have been in the psych ward for some time now. I have to change my medication and to say it is highly unpleasant is a gross understatement. I live alone but now I am sharing with twenty people and a bunch of staff and have basically a lot less rights or privacy than I usually enjoy.

When I was studying for my Masters I wrote an essay on a philosopher called Michel Foucault and his theories around power. Monsieur Foucault saw structures of discipline across society which while they were different kinds of things doing different functions, they all shared the concept of institutionalisation. That is, making people behave and think in a uniform way. It is interesting stuff.

The structures of discipline that Foucault noted were the prison, the military the school and the hospital. Essentially prison turns people from criminals into functioning members of society – or is meant to, school socialises people for the world of work, the army teaches the discipline required to be a effective soldier. The hospital creates ‘healthy’ people with ‘healthy’ attitudes. Being in the psych ward I see Foucault and his theory in every interview room, medication run and every nurses’ clipboard.

The funny thing is that we live in a society which likes to think it is beyond this notion of discipline and power. We have inclusive services created in consultation with service users. There are public advocates and official visitors to ensure structures are inclusive and helpful. But the issue really is still there. If it wasn’t then all my current cohabitants and I would not get weighed every Tuesday morning!

Begin a psych patient involves being at the bottom of a highly developed power dynamic and structure. I am allowed to go for a walk outside the ward for half an hour. So I am not a prisoner but my movements are controlled. If I was on the locked ward my movements would be even more restricted. The attitudes of alienation  and powerlessness you find in prisons are definitely found in psychiatric inpatient services. The other prison-like element I notice a lot is the waiting and how time is conceptualised. I know about prison dynamics as I spent over three years in prison in my early twenties. I see the parallels between the prison and the hospital to an immense degree. Waiting is a common element of both. In hospital you inhabit a sort of limbo time punctuated with nurses taking obs, giving medication, seeing the doctor, going for blood and other pathology tests, meal times and visits. In between those time stretches onwards into a sort of vague miasma. Being unwell makes it hard to organise your time and inertia can keep you from doing anything to fill the vast spaces of unproductive time.

I must note that this observation does not reflect on individuals within the hospital system. Many doctors, nurses and allied staff are amazing and do a great job with care and diligence. This post is more around systemic issues.

Another interesting notion of the hospital is that like all institutions, it self-perpetuates. Nurses always want you to go home and be ready for discharge but it is contradictory because everything about hospital trains you to do well not at home but in hospital! All institutions seem to work this way. In order to be able to function within the institution you became institutionalised. Then when you leave the institution is is even harder than it was before you went in! For me I feel lonely and struggle to fill all the unstructured time I find myself with. I am afraid of the world because it is too big. Hospital is a shocker for institutionalisation and all you need as evidence if the vast number of people who return over and over. In fact I have seen people get sicker the longer they stay in hospital.

It is like the structure which is meant to be helping in fact contributes to the illness.

I don’t have a proper answer to this. This is a big S social issue. I can’t fix the prison system either but I do think it is worth alerting people to these dynamics to help to understand and where possible avoid them. One of the things I do for myself to avoid being institutionalised is minor and harmless infractions. I will go for a walk without writing it in the leave book or I will sit outside the ward door without telling anyone. If nurses were concerned they could phone me so no harm done but it is me saying very gently ‘stick it to the system’ and it helps me remain independent and avoid becoming institutionalised. I also don’t do many of the group activities as any if them have ‘institution’ written on them in big magenta letters. I know the risk even if I recognise I need to be here,

I think some of the measures to remove some of the power element are laudable and often effective. But the hospital system is probably always going to involve a power structure to varying degrees of unhelpfulness. I think keep consulting, keep running inquiries and keep empowering those who use the services. If we have to have a power dynamic then let us make is as helpful a one as possible.

And in terms of my own current  little dance with the system, I am not sure where I stand at the moment. I’m changing meds and feel like terrified death much of the time so I will have to submit my will to the system even if I don’t want to. But I shall be doing so in full knowledge of the risks and my need to maintain my independent self.

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The psych ward diaries – How to do activism in an institution

I am currently an inpatient on a psychiatry ward in Canberra. This is not a particularly new experience for me as I have had a diagnosis of schizoaffective disorder and other mental health issues since 1995. My current issue is that I have had a series of factors contributing to me developing psychosis and depression. The doctors here have decided to try me on a new medication, which is a sort of last line of defense for treatment-resistant schizophrenia, which sadly mine appears to have become.

My interest is taken by the fact that I am a world-renowned advocate and author essentially living in an institution complete with power imbalances and arbitrary rules. In short the kind of place I tend to decry and criticize as being unhelpful for autistic people. I have been told I will be here for at least three weeks so this is my home for the time being.

As I mentioned, I am no stranger to an institution. In fact in my youth I was a prisoner and recidivist in order to feel controlled and contained. Quite a long way from where I am at now! I pride myself on my independence. Institutions are the enemy of independence to my mind now and I keep as far away from them as I possibly can on most occasions.

This admission is the first one I have had as an advocate. I didn’t think about this until today when I had a bit of a snippy moment with a nurse who I felt was not being as supportive as she maybe should have been. The I realized something significant. I was no longer a disempowered person fitting into a system in order to survive. Far from it! I was a activist finding myself within the belly of the beast so to speak. How on Earth was I going to make this work?

I gave the dilemma some consideration. The first thing I did was apologize to the nurse I had been snippy with. She was busy and overworked and wasn’t even the nurse assigned to me anyway. We got talking about my dilemma as an advocate in a system which is essentially a structure of discipline and something which I have at times viewed as the enemy or at least something very unpleasant and unhelpful.

The nurse and I talked about how my advocacy understanding cou

 

ld be used in the hospital to make things easier for patients and staff alike. I like that idea although I’m not sure it is the best self care for me to do advocacy when I’m really unwell!

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Advocates tend to be people who demand respect and state that people deserve better. However he mental health system does not seem to generate many people like this. Instead it often turns out people filled with self-stigma and a power dynamic which disempowers and robs people of their sense of agency and empowerment. I want to see advocacy in mental health settings generating a huge group of empowered people who question when things are not helpful and who have power and agency in their own lives, Gee if multiple times prisoner recidivism institutionalism Yenn can do it that, I hold very high hopes for everyone else!

We need a lot more advocacy in mental health clinical services, not only to shine a light on poor practices but also to promote understanding between staff and ‘consumers’ (I have that word!!) This can help avoid those awful assumptions and misinterpretations, which so often crop up. It could also build understanding of the experience of ‘patients’ for those staff members who are a bit old school and view any ‘behavior’ as being hostile or difficult rather than just being a means of communicating needs,

Autism, gender identity and psychiatry – promoting respect

I am staying at a friend’s house after being in hospital for five days. Long story but my mental health decided to misbehave and I was in a very unpleasant space. I want to talk about the experience of hospital but most importantly the attitude of the consultant psychiatrist and why change is still required in these settings, especially for autistic people.

I had not been in psychiatric hospital since 2013 – something of an achievement given my illness and my history. I discovered that things had changed in almost seven years and mostly for the better. The trip to emergency was very unpleasant but my request to stay in a quiet room rather than the waiting room were accommodated and the nurse assigned to me was very understanding and respectful. I was asked by the mental health admissions staff what I wanted to do and felt very much heard and empowered, even though I was unwell and felt very vulnerable. The nursing staff in the psych ward were almost all kind and explained to me what was going on. When I expressed that the uncertainty was really upsetting me they filled me in with all the information they had to make things less uncertain for me.

It was all incredibly unexpected and nice. In the past, mental health hospital admissions have been horrific in every way. I have felt – and been – entirely powerless and discrimination has been rife. When I posted on social media that I was in hospital this time, an autistic and Trans friend expressed concern saying how awful it is to be Trans and autistic in hospital. The whole situation had always been disempowering, invalidating and terrifying. However, this time was different. I thanked my friend who sits on the committee tasked with improving mental health services in Canberra for helping to make the experience of hospital so much better.

Yesterday I was discharged which was awesome, but the person doing the discharging – the consultant psychiatrist assigned to the ward – was the epitome of all the negative experiences I have had in the past in similar settings. Before I met him I thought this was my one and only positive hospital experience but the psychiatrist brought me back to all those other horrific admissions I had in the past. He started by saying ‘Is Yenn what your friends call you?’ to which I responded with yes and pointed out it is my legal name. He was rude about my gender identity and questioned my mental illness diagnosis of schizoaffective disorder. He asked who had given me this diagnosis. I responded by listing the six consultant psychiatrists in the past who had diagnosed me with this. He thought I was on too much medication and clearly thought there was nothing warranting my diagnosis. He said rude things about my weight and treated me like I wasn’t human. He fired questions at me about my illness. I was terrified he was going to cancel the medications I take which enable me to live my life the way I do and avoid me being totally psychotic and, well probably dead actually. That old feeling of powerlessness returned with a vengeance. I tried to be assertive but I suspect it just came across as angry – although actually I was angry. Very angry. How dare this privileged person who had known e for less than three minutes question the diagnostic wisdom of several competent psychiatrists who had known me for several years in some cases? What level of arrogance does it take to come to the conclusions that this man was? Far from listening to me, he was attacking everything about me. And this was a person who was supposed to help people with mental illness, not destroy them!

In the past I would have been a victim to these poor behaviours from the doctor but not anymore. But how many people are genuinely powerless in the face of treatment like this from psychiatrists and other clinicians? I have had a mental illness diagnosis for 25 years and I am only just getting to the point where I can challenge this sort of behaviour. Many people are taught to listen to doctors regardless of whether they are spouting hostility and nonsense. I don’t think this is OK at all. A doctor is a professional like any other. They can be great at their job but some of them are not great at all. And in my experience psychiatry is a profession which tends to attract arrogant people. Not to say all of them are arrogant of course but it is certainly an occupational hazard for this group. A lack of empathy is also a major issue for this group.

Being autistic and gender diverse really does seem to compound issues everyone else faces when dealing with doctors who fit the arrogant, ego-driven mould. Autism is barely known or understood by many mental health professionals and gender diversity is often viewed as a fad or just simply not understood, particularly – but not exclusively – by older clinicians. I often feel like my gender identity is seen as a sort of affectation rather than a deeply-held and essential part of what makes me who I am. Having people who are supposed to be helping me treat my gender identity as a passing phase is not only really offensive but also very hard to take when I an unwell.

I think the keys to changing this situation are firstly lot more training on autism and gender diversity for mental health workers and especially psychiatrists. Another thing which would help is developing a culture of listening to patients in psychiatric settings (*and I don’t use the term ‘consumers’ as it makes me really uncomfortable. If a person is in any part of a hospital accessing services from it they are a patient in my opinion). Autistic peer mentors and supporters in psych wards would also help I think and involving autistic and gender diverse people in designing facilities and services is a great idea – after all, we are the experts on being us and knowing what we need!

I hope the experiences I have had can be used as a teacher and I hope some psychiatrists read this. Everyone has the right to be treated with respect and understanding and to be listened to.

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