Theresa May, Mental Health and Resilience…

This week has seen Theresa May shouting her mouth off about “Mental Health” – Apparently, the problem is stigma, and we all need to talk about our mental health and all will be well with the world (That’s a trap by the way)

I could write for a long time about how utterly offensive I find it for the leader of this government, and this particular party to dare to isolate “mental health” as an individual, personal problem that many of us just happen to have, that occurs in isolation from the socio-political context for which they are directly responsible. I won’t do that – not too much anyway. I’m actually getting quite bored of reviews, and IAPT, and “parity of esteem” and however many shades of “doing nothing while making it look like we’re doing something so that we can shut up those who criticise us and make the rest of society look the other way” they can come up with. Enough already. I’d like my focus here to be a little different.

I’ve read a couple of good things this week too though, which have made me think.

One of those things is this – “The Problem with Resilience” (Written by Linda Gask)

I liked this piece, it made me think. So here, I want to add to the points it raises by sharing my own thoughts and perspective (as a physically disabled autistic woman with “psychiatric co-morbidity”). So then –

Resilience

I’m glad people are challenging the use of the word “resilience” (as in the article above), because to be honest, this word (and its synonyms) feel like a stick that has been used to beat me with for most of my life. The labels that have followed me around – “over-sensitive”, “anxious”, “depressed”, “ill”, “emotionally labile”, “autistic” “psychiatric co-morbidity” (for goodness’ sake), – or, as I’d often describe myself, “off my fucking head”, are all often taken to mean someone who is not “resilient”. Someone who, according to the standards of the world, spends periods of time “not coping”. The consequences of this are advice along the lines of “look on the bright side”, “put it out of your mind”, “toughen up”, “think of others worse off than you”, or … the worst, the dreaded recommendation of “mindfulness” and “therapy”.

And according to any objective standards of the world, that’s all quite accurate. Objectively, I’m physically fine most of the time. I’m not in a war zone, I’m not starving, I’m not experiencing domestic violence, I have a fairly regular income, a great family and am in a particularly loving relationship. Objectively I’m safe. Objectively things are good. Objectively I should be able to cope, and my frequent failures to do so must indicate lack of resilience (and a lot of other bad things and moral failings too). But this objectivity is not the sum total of my truth.

My reality is often a racing mind of tumbling confusion that goes so fast I can’t hold onto it. That just won’t keep still. It’s spiralling screaming of internal monologue telling me everything that’s dreadful and wrong and horrid. It’s (really, actually, truly, and quite distressingly) not being able to go near the oven in case I accidentally cook the cat. It’s really believing I might have cooked the cat. It’s repeatedly checking I haven’t cooked the cat. It’s getting other people to check I haven’t cooked the cat…  It’s not daring to move because I might hurt someone. It’s being doubled up on my bed unable to move because anxiety can be literally crippling. It’s trying to hold a coherent conversation while blocking out the disgusting, violent images that accompany my intrusive thoughts (in my case I mostly know these aren’t real – I know some people don’t, but they seem real, and they’re distressing, and trying to ignore them and concentrate takes work). It’s wanting to be alone because people hurt, but being terrified of being alone because I don’t trust my own thoughts. It’s knowing that my loved ones are about to die horribly. It’s screaming and hitting myself because there are just no words anymore. I can’t escape my own mind, even when it’s the enemy.

My reality is walking down a street, or sitting talking to someone while my body is telling me (my reality) that I’m about to be hit by a train. It’s permanent fight or flight. It’s stomach churning sickness. It’s being expected to “just email someone” or “just phone someone” when actually that “just” involves putting my head in the jaws of a lion. It’s being totally terrified and out of control because a train is delayed, and then being exposed and vulnerable because “being totally terrified” makes me do odd things like moan, rock and hit myself. It’s being asked if I’m “alright”, and just not having the words because the person asking is just nowhere near my reality, and probably doesn’t want to be.

It’s feeling a bit better. Feeling like the sun’s come out. But knowing it won’t last. It never has lasted.

I don’t deny that these are problems. They are. It’s not fun. They’re part of who I am – for whatever reason – clinical genetics, neurological abnormalities, “environmental factors “ – whatever. They’re part of who I am. But I have to say – managing them makes me feel pretty damn resilient. I’m still here, and I achieve (sometimes not everything I’m supposed to achieve by objective standards – sometimes not everything I want to achieve) But I manage.

The thing that angers me though, is the political context of my personal experiences (back to Theresa May. Well, not totally.) Before the things I’ve described above acquired their clinical labels, and gave me the words for my “psycho-social disabilities”, my diagnoses related to physical disabilities. This meant that the advocacy and campaigning that was fought on my behalf was for equipment and adjustments for me to be able to access my physical (educational) environment on the same basis as my peers. My disability politics were framed around the Social Model (with various adjustments as I’ve gone along) – but the idea that the environment was disabling, and that adjustments to enable participation were my right felt like it was established, even if it was ignored by many, and made me doubt for myself whether I was truly deserving of such adjustments and accommodations.

The trouble is though, that I just don’t experience much of that for my “psychiatric co-morbidity”/psycho-social disability (elements of which I’ve described above). For these, I’m offered medication (can be useful, but still carries the expectation that I’ll fix myself and become socially acceptable – and stop causing others problems by talking about my weirdness), or therapy (which translates as “fix yourself” – or “allow a professional to fix you”, and results in self-blame when it fails to work).

I’ve been trying all that stuff for years though, and I’m still not “fixed”.

And I wonder how long a wheelchair user would be expected to persevere with physiotherapy and rehabilitation before they were allowed a ramp to enter their workplace?

The problem is, that as I think about it, the equivalent of a ramp – the situation  that would feel like true equality (or “parity of esteem”), that would honour my resilience and respect the “work” that becoming and staying well can sometimes take, and that would represent a true challenge of ableist oppression and the pursuit of a truly just world, would involve acknowledgement of the fact that for some of us, at some times (often and repeatedly and as a core, ongoing part of our lives), “resilience” might look like getting out of bed and having a shower. It might look like making a cheese sandwich, or summoning every ounce of strength and courage that you have and walking 100 meters to the post box. It might involve getting from one end of the day to the next, and managing to find the ability to sleep in the midst of the screaming and hopeless crying. It might involve still being alive.

I hate wanting to feel good for having “managed through a bad day” and wanting to celebrate what, to me, feel like huge victories (I cooked dinner, I made the phone call, I looked at the mail, I checked my bank account, I ate in front of strangers), but rather than feeling good, beating myself up because of all the “proper” things I haven’t done because I was busy directing all my efforts at coping with what was in my head.

Shall we think though about what this “true equality” might mean for our society? This society tells us that we’re the problem, because to suggest otherwise would involve contemplating social change and a fundamental challenge to “how things are” (according to neoliberal, capitalist orthodoxies). So unless Theresa May is taking on such a challenge and working to address it (I don’t think she is), then she accepts that people like me (and people who experience this injustice far more extremely than I do) are collateral damage. She accepts that society makes us into personal failures and lets us live on a knife-edge.

Okay – but can we please stop dressing it up as concern for “mental health” or as “challenging stigma”? It’s not. It’s protecting the status quo and keeping things comfortable for those who aren’t falling apart, while causing more and more of us to fall apart, and then blaming us when we do – Conservative Capitalism’s Cannon Fodder.

It’s brutal, oppressive and unjust. Let’s not pretend otherwise.

Frustration, shame … and doing stuff anyway…

I’m writing this because I have important things to do just now, and negative thinking is getting in the way and slowing me down. Writing here is a way of externalising things – “getting it off my chest”, if you like, so I can get on with being productive. So I’m going to describe the “problem” before trying to explain what might be done about it (With it? Because of it?)

Saying the “Unsayable” 

I’m also writing because a lot of the things I’m thinking are things that I feel I’m not supposed to think  – Things where a commitment to “autistic pride” and to “identity” and ideals like that come up against … What? I don’t know – Self-hate? Disgust? Internalised ableism? A desire for an easier life? It’s really hard to be a person who cares deeply about autistic community, about identity, about rights … and at the same time, to sometimes really, really wish I were – could be – could make myself – normal (socially acceptable). Or alternatively possibly just accept that I’m pathological, that there really is something individually wrong with me – shut up, accept that I’m “less than” and keep chasing specialist therapy to fix me.

Arguing that there’s “nothing wrong with me” but that “the world hurts” feels audacious sometimes.

It feels like if you’re in a minority of any kind you have to adopt a position and stick to it – and any ambivalence is “letting the side down” – but life is never so one-sided, right? Sometimes it seems you can think one thing, and really believe it to your core, but life and the world get in the way, and make that position awkward, challenging … indefensible? (Well, no, obviously not. Definitely not.)

Frustration

Basically – the situation (the problem?) just now is that I’m so, so bored of being “different”. I’m bored of thinking. I’m bored of over-thinking. I’m bored of thinking about thirteen different things at once and all with such burning intensity that it hurts. Sometimes this kind of thinking is brilliant – it’s exhilarating and electric. But other times (like now) it’s overwhelming and self-defeating. It’s spaghetti-mess rather than straight lines.

I’m bored of the fear I have of other people, and of having to interact with them – fear of going to social spaces, in case I have to do conversation and I get it wrong because I just don’t know what I’m supposed to do. I’m bored of not understanding people. I’m bored of feeling like they don’t understand me. I’m bored of feeling terrified and then of beating myself up again and again – analysing, and analysing, worrying and worrying, because I feel like I’ve got it wrong again – I don’t know the rules, and even at times when I DO know the rules, other people don’t stick to them, so how am I meant to know what’s right in that particular moment? It’s frustrating and unfair to have to play a game day in day out where the rules constantly shift and no one tells you.

It’s like wearing a social blindfold  – and it’s made worse by the fact that just sometimes I actually DO get to connect with people in a way that feels like “being myself” – and it’s meaningful and enjoyable and stimulating and productive – and it makes the rest of the time seem so bloody vanilla, and at the same time … so emotionally expensive … so EXHAUSTING.

I’m bored of feeling like I have to hide. I’m bored of being angry because I feel like I have to hide. I’m bored of worrying because I’m not doing a good job of hiding.

 

Shame

But also, I feel quite ashamed –

I’m pretty ashamed of myself because of how weird I am. Because of a lot of the things about me that get labelled “autism” (But how does that work, for a “proud autistic”?)

But I’m mostly ashamed because there’s so incomprehensibly much in the world that needs changing. For autistic people who have much worse lives than I do, and for lots and lots and lots of other people oppressed by the world.

I’m ashamed of reading so many other people worrying about “disclosing” their autism, and saying “that’s crap, I feel it too” – but what am I actually doing to challenge that state of affairs? And workplace discrimination, and unemployment, and abuse, stigma, bleach “cures” … (and that’s just the “autism world”) What am I doing about that? Feels like nothing.

Feels like nothing I do will ever be enough. If my stupid brain would only work better…If I could just get over myself – get over being so bloody scared … I’d be so much more useful.

And I feel ashamed of wasting time – you can call it “relaxing”, or “self-care” or “wellbeing” or whatever, but how is that ever okay when there’s so much to do? But then I get tired or tangled, and I have to stop working – and I feel ashamed of wasting time.

And I actually don’t like it (it makes me really, really uncomfortable) when people say I do a good job at stuff, because it’s not enough, it’ll never be enough. I could always do more.

Those are the Bad Thoughts anyway, but enough of all that…

 

The Good News

That bit sounded negative, selfish, self-indulgent. I accept that. I’m not proud of any of the above. I don’t aim to justify it. (I’ve been writing and re-reading the above, and thinking “oh for goodness’ sake, get a GRIP, woman.”)

But I needed to be honest, and “real” about how I feel sometimes. I needed to do this, because I think if we’re not honest like this, we give others (I mean mainly other autistics in this case) the false impression that we are totally comfortable with our identity, that we fight against the world, but never question ourselves. And this pervades all of our advocacy. I’ve read powerful writing myself, and thought “that’s exactly the kind of autistic person I want to be” or “that’s what I want to say”but then ended up feeling that I could never be that good because I’m so scared, and I doubt myself so much, and my brain is just so flipping inefficient and tangled.

So being “real” matters – the good, the bad and the ugly.

Because all of these tangles and all of this confusion, and all of this exhausting, infuriating intensity are who I am. And that means that they are part of my successes, as well as my failures.

  • They’re part of me when I write a blog post that helps another person to communicate a little of their own world that they see painted in my words.
  • They’re part of me when I manage to survive a social space even though I’m terrified – and make a contribution that was mine, that no one else could have made, or thought to make.
  • They’re part of me when I deal with worries and uncertainties by having ideas, by planning and by making ordered impact out of the chaos – ideas and plans that other people might miss because they’re never uncomfortable enough to have to think like that, or because they’re not focused enough to keep thinking about an issue until they get an idea out of it.

We can do stuff – when we feel broken and weird and damaged – even if for that one day, the only thing we can do is survive – we can do stuff. We can use who we are and what we have to work together.

I reckon we might be stronger than we know.

We may be messed up, but we can do stuff. And we have to, we absolutely have to – there’s so, so much to do.

Onward.

GUEST POST: “My experiences with veganism, being autistic and having mental health problems.”

This post isn’t by me. I’m extremely happy to be able to offer my blog as a space for a good friend to be able to write about her experiences of autism, veganism  and mental health issues while protecting her anonymity. I think her words are extremely important – and they really, really resonate with me – so it’s a privilege to be able to host them here.

She writes …

Talking about my experiences with veganism being autistic and having mental health problems, is perhaps one of the hardest things I ever had to do. There are a lot of reasons that I never intended to talk to anybody about all these things because for many (if not most people) my ideas will be fairly controversial and, perhaps most importantly, it would give them an insight on my personal life that I am not sure I am comfortable with them having. But then again, I have to tell somebody, someday… Because I am pretty sure that am not the only one struggling with these issues or thinking this way. First of all, I want to talk about why I am a vegan. Then I want to talk about how having multiple other identities (autistic, highly anxious individual, immigrant, Greek etc) highly impacted on my ability to adhere by the standards of veganism on various occasions during my life.

My decision to become a vegan was at first out of empathy (yes autistics have a lot of that, despite common beliefs). I always loved animals and I cannot see animals suffer. As many people who include meat in their diet, I did not think of the death the animal that was on my plate had to go through, or their life for that matter. I kind of knew what meat was, but I never really realised it. After all, it looks so freaking different from the whole form of the animal it was taken from (except from fish, but I always considered fish as something a little more than swimming plants for some reason) for my literal mind to make any kind of connection between the two. Interestingly, my first disgust for red meat came when I sliced my finger and removed a piece of skin big enough that you could see underneath it. I then saw my “meat” in all its bloody gore and it looked so freaking similar to the red meat I had been eating that I could not stand the mere sight of red thereafter. For a large part of my life (and despite my father’s, who grew up in an animal farm, gross descriptions of the massacre of the Christmas pig or the journey of the Easter lambs from the day they were born to the slaughterhouse) I believed that the animals that I was eating were living a happy and peaceful life in the valleys and mountains of Greece and one day the just dropped dead so humans went and picked them up much like apples from a tree and brought them to the rest of us humans to eat so that they don’t get wasted. It’s fair to say that I was pretty resistant in comprehending the cruelty that was attached to my dinner choices.

I was first introduced to vegetarianism through a group of spiritual/new age people I used to hang out with at university and their main argument was that meat affects your vibrations, as you consume all the negative feelings of the animal that you are eating. Needless to say I found that argument silly and I wasn’t convinced. Even after becoming vegan I was relatively angry at those people who used such silly arguments to promote vegetarianism, when there are so many serious and legitimate reasons for people to minimise their animal product consumption.

Around late 2011 I was introduced to the concept of veganism for the first time in my life by spending my recently graduated mostly unemployed free time on the internet following links one after the other. And I saw everything. I saw the posts. I saw the videos. I saw the death. I saw the suffering. I saw the factory conditions. And I was horrified. I was hugging my pillow and crying for days. I was emailing slaughterhouse videos to my mother begging her to not serve me meat again, only to hear that these things “only happen in America” and in Greece things are far more humane. Regardless, I started firmly believing that it was wrong of me to use and abuse any animal for my own personal pleasure. Plus, there was another big motivator: according to the internet if I became a vegan I would magically lose all the extra weight that I hated and was bullied of for all my life, the weight which, at the time, embodied everything that I hated about myself and everything that differentiated me from other people (pffff… yeah. One topic at a time). So I made a decision: after the Christmas holiday is over (because I considered it to be impossible for me to tell my parents that I am not going to eat turkey at Christmas) I would go vegan. And I did. And it lasted. For a month…

And here is the vicious circle of my eating habits as manifested by my efforts to “go vegan” and stay vegan.

  • Buying lots of vegan food and filling up the fridge
  • Cooking with the vegan ingredients and trying very hard to manage food planning on top of every other aspect of my life.
  • Having my anxiety taking over my life (as it often did and does) and failing to manage any aspect of life, let alone my food consumption.
  • Failing at eating a vegan diet, feeling like a horrible person, eating my feelings away and feeling even worse about it.

There are a lot of things that veganism made me realise about my eating habits.

I realised that one of the few ways I have to control my anxiety is eating. The other one is self-harming. I know this is going to be a controversial opinion but I consider (superficial) self-harming (aka cutting myself on the arms/wrists with a razor) to be the healthier option, because it makes more sense to me to damage my body “cosmetically” in ways that are going to be easy to heal than damaging in internally in ways that are probably be more harmful in the long term. But the problem with it is that it leaves scars. Scars that other people can see. Scars that are going to tell people things and scars that people are going to make assumptions about, assumptions you don’t want to necessarily want them to make because it feels like inviting them into your problems, even unintentionally. With eating, nobody can see you do it. You can sit alone in your room and eat to your heart’s content whatever you want and then wash your hands, brush your teeth and, unless you have been consuming whole bulbs of garlic one after the other, nobody will ever know what you did.

I realised how deeply entangled our food habits are to who we are. I realised how much culture, relationships, exchange of love and even identity revolve around food. When I first mentioned that I am going vegan to my family members and few friends, I had to endure everything from hearing that it will only be a fleeting phase that I won’t stick to, to collective verbal attacks and abuse about who stupid me and my choices are, to my grandmother’s frustration that I can’t eat her chicken livers in tomato sauce (a dish that was a really strong bonding thing between the two of us during my childhood and adolescence – and I have a REALLY strong bond with my grandmother), to my every “why do you have to be so pedantic and difficult, it just has a little bit of egg white in it” that my ex-boyfriend told me after every accidentally non-vegan dish that he would cook for me (one of the many, many reasons I was constantly told that I was pedantic and difficult). I realised the ridiculously high level of questions and unwanted communication it brings from other people, from genuine curiosity to having to hear yet another silly joke about cows’ tits and how huge they are because of all the milk.

I also realised something that should be fairly obvious: my eating habits will always be with me, coexisting with the rest of my life for the rest of my life. They were there when I was crying every day after school in my first job as a special education teacher for the way my students were treated. There were there when I discovered I was autistic. They were there when my mother used to chase me around the table to get the resignation form out of my hand when I wanted so desperately to quit, because the other teachers simply refused to listen what I struggle so much to communicate. They were there when I was rejected by the (then) love of my life and best friend. They were there when I moved to a whole other country. They were there when I did my master’s, whilst trying to get used to living to a whole other country, all by myself and not knowing literally anyone. They were there when I graduated and was making £600 a month at my first job. They were there when I had to move house, after house, after house. They were there when I was sitting on the bathroom floor, trying to think of ways to end my life. They were there when life got impossible. They were always there… And with the already very disturbed relationship I have with food as well as the ever-present anxiety that never leaves me alone and escalates to extremely dangerous heights from time to time (actually feeling like a heart attack), I tried to manage them as best as I could.

If I was ever to publish a diary of everything that I eat in a day for everyday for an extended period of time, the title people would give me, at best, is “mostly vegan”. Many vegans in particular would be absolutely disgusted by me and my inability to “stick to a vegan diet”. They would call me a bad representation of veganism, give me unsolicited “well-meaning” advice on nutrition and the effect of what I eat on my mental health, mountains and mountains of nutrition pseudoscience and about how to deal with my mental health problems or what they might mean, I would get told repeatedly about how I need to think about “the animals first” and about how they have it worse than I ever could (which, to an extent is true, chances are that I will never be tied upside down, dipped in electrocuted water and then passed in front of a throat-cutting machine that may or may not get my throat and then skinned, possibly still alive), hell, I might even get death threats, as such is the way that the internet seems to work, particularly in certain circles.

But here’s the thing: the definition of veganism is: “a way of living which seeks to exclude, as far as is possible and practicable, all forms of exploitation of, and cruelty to, animals for food, clothing or any other purpose.” And here’s my question: who gets to decide what is “possible and practicable”? Who gets to tell me how manageable my anxiety is, from their perspective of course, and how they “also had an eating disorder” but they overcame it by doing this and that magical little thing? Because in any way other than my anxiety, I have done EVERYTHING I possibly could to be the best vegan advocate that I can. I have learned to cook amazing vegan food that has left even the most hardcore of carnivores utterly satisfied. I have talked about veganism and what it means for me in every given opportunity to people I met. I have spent hours and hours thinking about what is the most effective ways to talk about these things and to who. I have read practically every single thing that there is on the internet about veganism and the vegan lifestyle. I have read practically every single book that was written on the subject, or at least added it to my Amazon wish list. In true autie mode, I thought that the more I learned about veganism, the more of a chance I actually had to stick to it one day. And therein lies an important distinction that needs to be made: my problems were never about veganism. My problems were about how I manage my anxiety and how it manifests in my life because of my individual set of traits. I know many other auties who are vegan and many more anxious people who are also vegans and their anxiety or autistic predispositions have nothing to do with their food choices or even their eating habits. I don’t think that veganism is incompatible with those who have mental health problems or are autistic. In fact, I don’t think that veganism is incompatible with the anybody’s lifestyle, considering they live in the western developed world, above the poverty and don’t have multiple serious food allergies. But I do think that some people, even if they don’t belong in the aforementioned categories, will have a much bigger trouble sticking to a vegan diet. Particularly for those on the autism spectrum, food sensitivities and food aversions may be a huge factor, as well as executive functioning difficulties. At the end of the day, some people find life harder than others, regardless of any individual choices they have to make.

So then what about my veganism? Why do I insist on calling myself a vegan even if I struggle this much to stick to a vegan diet? For me, veganism is a very political decision. I disagree with the assumptions people make about (some) animals. I disagree with the idea of animal ownership and the concept of having complete control over another individual’s way of living and lifespan. I disagree with the idea of human superiority. And many other misconceptions humans have about non-human animals. I also am particularly concerned about the way the food system currently operates and the current food waste levels (which is not an exclusively vegan problem of course, but it is gets particularly alarming when animal products are wasted, given the amount of food, water, space and pollution that went into creating those animal products). I am very concerned with the conditions slaughterhouse workers have to work under, particularly in pass production lines. I am extremely concerned about the environmental implications of animal agriculture. The list goes on, there are so many different issues affiliated with the consumption of animal products.

But perhaps of the most relevance is the fact that I don’t want you to know about my mental health problems or about how I handle them. Shocking as it may sound, I actually consider them a personal matter. And saying that I am “mostly vegan” will first of all be a painful reminder of all my failures and a reason for anybody else to ask me why “mostly vegan” or what I mean by “mostly vegan”. It will give an excuse to people to treat my veganism less seriously and serve me animal products whenever they felt it is most convenient for them to do so. And at the end of the day for all intents and purposes I AM a vegan. Because I am vegan “as much as it is possible and practicable”. It is neither possible nor practicable for me to be a vegan when under acute anxiety. And that is something that I have to deal with, not anyone else. And anxiety is something that, as much as it very much controls my life sometimes, it doesn’t define my identity.

I sincerely hope that I find better ways to manage my anxiety for many reasons, not the least of which is my honest and deep desire to not contribute in any way towards the animal agriculture industry ever again. Veganism is something that I very firmly believe in and I fully intend to be a vegan for the rest of my life. Vegan options are growing by the day and I believe that the day when I’ll have readily available vegan options on those distressing times is not very far. Until then, I’ll do the best I can. And that’s the only thing anybody can promise.