Have things changed? Reflections after 15 years of advocacy

I recently responded to a post from another advocate who was concerned that their efforts had not achieved anything and that all their work to change things has resulted in little or no difference. My response was to refute that concern and state that things are very different than they were when I started working as an autism advocate in 2005, largely due to the actions of advocates.

I have the beautiful gift of quite a lot of hindsight when it comes to assessing societal changes around autism as I have been advocating for almost fifteen years. When I started I was only aware of about five other autistic authors active in Australia. The discourse around autism was so deficits-based it made me cry and allistic parents rarely said anything positive about their autistic children. Diagnosis rates for adults – and particularly adult women – were low and there was little or no understanding of intersectional  issues. Gender diversity was rarely mentioned and the sort of autistic community we have now simply didn’t exist.

I can categorically say things are different now and that there have been lot of improvements. Some of these include the vastly increased knowledge and understanding of autism in the wider community. When I started out most people had no concept of what autism was and their only reference point was the film Rain Man. While these days many people still have some pretty unhelpful views about autism, the conversations I have now with those who have no personal connection to autism are very different. People are a lot more receptive to what I have to say and I am often surprised by the level of knowledge others have.

Another difference is in the attitudes of allistic parents. I used to be terrified of meeting allistic parents as their attitudes were almost always highly negative. The idea that they were martyrs and somehow ‘victims’ to autism was rife. In some cases they viewed themselves as victims of their own autistic children! These attitudes still exist now and are prevalent in some areas but there is also a growing voice from allistic parents that embraces and respects their autistic children. I know a lot of allistic parents who are very receptive to my message and who are genuine allies for their kids. And when I meet parents of newly-diagnosed kids they may have some negative attitudes but they seem a lot more receptive to my message than their counterparts were in the past. There is still a lot of work to be done in this space but I have seen a clear shift since I started out.

There is also a much bigger autistic community and communities within that than ever before. A sense of connectedness and autistic pride is a lot more common than it was in the past. Once again there is still work to be done in this area and some of the online groups are cliquey and exclusionary. There is also some lateral violence which occurs within the autistic community where people attack others instead of fighting the oppression we face. I know people who will not be part of online autistic groups due to these issues so this is definitely an area for work.

Gender diversity and other Queer identities are much more visible within the autistic community than ever before. This is a great thing particularly given the significantly higher percentage of autistic people who are trans and gender diverse. However, against this positive is the issue of bigotry and transphobia, trolling and hatred levelled against trans and gender diverse people. Having a sense of pride and identity is great but until the bigotry has been addressed it will not be enough. This is an issue at an individual and a societal level and protections and respect for trans and gender diverse people are essential.

Areas where there is still a lot that needs doing include the prevalence of ABA, issues with representation and inclusion on decision-making bodies, issues with low employment rates and discrimination at work, bullying and mistreatment in schools and discrimination in health care – especially mental health care to name a few. We have definitely not ‘arrived’ yet and the work of advocates and activists is just as important and necessary now as it was in the past.

The positive changes I have outlined above have come about mostly due to the work of autistic advocates and activists and also allistic allies. I love that I can look back to a time where I was one of five or so people doing similar work and I am now one of thousands. The more the merrier where advocacy and activism are concerned. There is still a lot of work to be done but from reflecting on the past it is evident to me that things have changed and are continuing to change. It is essential to keep working to address disparities and oppression as these things are always up for grabs. It is not the case that progress will happen anyway and it is so important to keep going and keep challenging negative and exclusionary thinking and practices. So happy new year when it arrives and let us make 2020 a great year for progressing the good work which started long before I was on the scene.

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The trouble with power 

On Wednesday I was discharged form the locked psychiatric ward. I spent a week there and it was very unpleasant indeed. It triggered traumatic memories of when I was. a prisoner in the late 1990s but the main issue I had was the very evident power imbalance between patients and staff. I felt entirely disempowered and I noticed disempowerment was a universal theme of the place. As an advocate it was pretty hellish because there as almost nothing I could do to address the imbalance. I told the psychiatrist my concerns and she looked at me in a rather puzzled way. I told nurses and they assured me there was no power imbalance and it was a place of care but to me this was simply not true. It is not that all the nurses and doctors were cruel or unpleasant – some of them were lovely. The issue was that I had no control over anything and no input to decisions governing my treatment or even my everyday existence. It was horrible and I have no intention of returning there if I can possibly help it.

I talk a lot about oppression and privilege and ideas of intersectionality, Power – and the lack of it – underpins these discussions. Being oppressed often relates to that idea of disempowerment and people – and groups of people – having decisions made for them by those in positions of authority. The Disabled community – and within it Neurodiverse people – experience this a lot. Our reproductive rights, rights as parents, employment rights – including wages a lot of the time – rights in healthcare and other areas are so often under threat or simply non-existent. 

Disempowerment has some impacts on our interaction with the world. One thing I noticed in the locked ward was that there was a lot of aggression. Aggression can be the last remaining strategy of gaining some power for oppressed people but it is usually not a very effective one. When someone has few or no rights or control over their life, aggression is a understandable last resort but it can lead to sanctions and further disempowerment. Our prisons are not so much filled with bad people as disempowered people. Another impact of disempowerment is self-destruction. This can take many forms. When disempowered I usually go towards self-destruction. In a mental health context particularly this is another thing which can lead to further disempowerment.    

Disempowerment is often invisible to the powerful. I have a wonderful example of this from a friend who works in a corporate workplace. My friend is from a refugee background and very aware of diversity considerations. Her manager was putting together a conference and asked for her input. The manager is a white, cis gender, hetero, abled man. As such he does not belong to any disadvantaged or oppressed groups – not a criticism of the man, but an indicator that issues around oppression are likely to be quite alien to him. My friend looked at the speaker list the manager had come up with and was horrified. She said to him ‘you have no women and no People of Colour on this list. This is not inclusive.’ The manager was amazed at my friend’s apparently incredible knowledge of inclusion and told her this. It was probably not the case that the manager had intentionally left people from oppressed groups off the speaker list, simply that he didn’t realise what he had done. This was also the case in the hospital. When I told nurses that the power imbalance was awful they simply dismissed it. I doubt they were bad people or intentionally wanted to compound the issue, they just couldn’t see it because it was not an issue for them. It is not always the case that those propping up structures of power are aware they are doing so!

What is the solution to this? Unfortunately there is not an easy solution. The uneven distribution of power is something people have been trying to address for centuries. The structures of power in society have been there a long time and me writing a blog probably isn’t going to address the problem in any practical way. However, there are a few things which I think can make a difference.

  • Anything which genuinely empowers oppressed people – and groups – is probably a good thing. For example if my friend’s manager had booked speakers for the conference who were women, or trans or People of Colour or Autistic it would have been a good thing as it would not only empower the speakers but would help to shift the dynamic of disempowerment.
  • Advocacy and activism are a big positive. The more people doing this, the better. Allies (those who are not from oppressed groups themselves but who are true supporters – and don’t make it all about them!) make a positive difference as well.
  • Services which are inclusive and respectful. Training on issues around oppression and disempowerment for staff working in services is really important too. As I have discovered, that ignorance among staff that there is even an issue is a big barrier in and of itself.
  • Pride, respect and positive self-knowledge for oppressed people is a biggie as well. This can take a huge variety of forms from things like the National Awards for Disability Leadership, to the Sydney Gay and Lesbian Mardi Gras to genuine, inclusive representation in media to acts of self-determination. These are all great ways of building pride and respect. 
  • For Autistic people, ideas of Neurodiversity and Autistic Pride can help with both empowerment of individuals and also all of us collectively.    

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Mental health clinical settings and autism – some personal insights 

Content warning – reference to mental illness and institutional settings 

I just sent over six weeks in psychiatric hospital due to my mental illness. It was exceedingly unpleasant as it usually is. I have had a large number of admissions to psychiatric wards in the past 25 years. I want to unpack some of the issues autistic people face in mental health clinical settings and provide some thoughts on how these services could be improved.

Many autistic people have co-occurring mental health conditions. I myself have schizoaffective disorder which means I experience psychosis and mood issues. Some autistic people find themselves in psychiatric hospitals and other clinical support services. It is rare to hear a positive report from autistic people on their experience in these settings.

Some of the issues we can experience in mental health clinical settings as autistic people include:

  • Ignorance and prejudice from staff. Training for mental health workers still includes little reference to autism meaning that staff – psychiatrists, nurses, psychologists etc – may have little or no understanding of what it means to be autistic and how autistic people experience the world and experience mental illness. This can make stays in hospital and other clinical settings very unpleasant indeed and result in poor treatment and assumptions from staff.
  • Misdiagnoses. It is very common for autistic people to be misdiagnosed with mental health conditions they do not have, often instead of an autism diagnosis. A misdiagnosis can be really damaging for a variety of reasons, not least of which is the damage it causes to our sense of who we are, our identity as autistic people. It also means the treatment we receive will not be targeted to our needs and we may miss out on effective treatment for our illness. I had a psychiatrist once who read a paper which said autistic people cannot have psychosis. This mean he stopped my anti-psychotic medication. Guess what? I then got really unwell with psychosis and spent the next two years in and out of hospital and was very scared and miserable. Getting the diagnosis right is extremely important for everyone but particularly for autistic people.
  • Sensory issues. Imagine you have sensory processing issues and are in the locked ward where there is something which triggers your sensory issues? There is nowhere to go and staff may not listen to your concerns or be unable or unwilling to do anything to alleviate it? Not nice at all and this can lead to meltdowns, overload and things seen as ‘poor behaviour’. The worst thing is that this may mean you are kept in the hospital – along with the sensory triggers – for even longer! I know of people who have been in this situation for years and it is as close to Hell as I can imagine.  
  • Misunderstanding of meltdowns. Autistic meltdowns are a response to overload – a release valve for too much sensory, emotional, social or other input. They are NOT poor behaviour but they are often seen that way by hospital staff. During my recent admission I had a couple of meltdowns and thankfully I was able to explain afterwards what had happened and why and staff listened to my explanation and took it on board  but in the past this has not been the case, ‘Poor behaviour’ can result in sanctions within the hospital which if anything make meltdowns more likely to occur!
  • Hyper-empathy. Many autistic people experience the emotions of those around them, known as hyper-empathy. Imagine being in hospital with a number of sad, angry, scared and confused people when you are unwell yourself? The emotions of those around you merges with your own misery and makes things even harder. I experience this and it is awful and not well understood. I tend to spend time in my room to be away from the emotional input of others but this can be seen by staff as isolating behaviour. 
  • Sharing space with others. Being in a small space with lots of other people is not something many autistic people are keen on! I live alone so being in close proximity and sharing space with lots of others only adds to my misery and anxiety. 
  • Bullying and abuse. I have been bullied and experienced abuse in hospitals on a number of accessions. On one occasion I was assaulted by a fellow patient. I was really upset and told the nurses. They said I should ‘be less annoying.’ Bullying and abuse – and victim-blaming – is never OK but it can happen in these settings. 
  • Uncertainty and inconsistency. Being away from routine in an often inconsistent environment is really hard anyway but when you are unwell it is even harder. The level of uncertainty in psychiatric hospitals is immense and can contribute to mental health issues for autistic people.

Some solutions 

The biggest solution to these issues centres around building knowledge and understanding of autism among staff in mental health clinical settings. The issues I have described above almost all involve a lack of autism knowledge amongst staff. Other related solutions include autistic people – and everyone else using the service – being listened to and respected. There are also solutions inherent in the design of facilities in terms of sensory issues and consulting with autistic people in the design of facilities. I would like to see autistic peer mentors employed too. These solutions are not necessarily hard or expensive to implement.

Shortly before I was discharged I gave a talk to some of the nursing staff at the hospital I was in. The talk covered similar topics to this post. It was really well received and apparently nurses were quoting me afterwards to their colleagues who could not attend. I want this kind of information to go to everyone how works in mental health clinical settings because I think it would go towards making some very necessary change. 

Autistic people have the right to access mental health services which are inclusive and supportive and to have our needs respected and understood. Hospital should be a helpful experience, not an ordeal. 

I want a world where health professionals - and especially mental health professionals - listen to and respect autistic people

 

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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