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Mental health is a privilege

mental_healthIf you haven’t been diagnosed with a neural ‘condition’, such as such as bipolar disorder, schizophrenia, autism, aspergers syndrome, depression, attention deficit disorder and so on, you benefit from neurotypical privilege. Sarah Langston, who lives with bipolar disorder, investigates the complexities of navigating the world without this advantage and calls for those with privilege to work with the atypical community for change.

Dotted around the internet are privilege checklists covering an array of characteristics. Race, class, ethnicity, religion, sex and/or gender – almost every conceivable arena of identity is covered. These lists are designed as a discussion portal for folk who inhabit spheres of power in our society. Most of us could straddle more than one. I, for instance, possess white class privilege in spades.

Rather than listing forms of discrimination, these lists cleverly invert rhetoric so you instead read how the world favours you because of the way you are. From access to healthcare, to education, to the behaviour of others and more, privilege checklists force us to engage with the specifics of how the world is more accessible and liveable for us and not others.

Today I stumbled across a checklist for neurotypical privilege. Published on the autism blog Square 8, the list works through fifty ways in which life is easier if your brain is wired in a way that physicians would consider “normal”. That is, if you exist without any kind of neural distinction such as bipolar disorder, schizophrenia, autism, aspergers syndrome, depression, attention deficit disorder and so on.

As I read through the Square 8 list, I felt myself getting choked up. Included were points like item #30 - “ No one speculates about whether I am competent to raise children based solely on my neurology”, and item #17 - “I can reveal my neurology to my boss and co-workers without fear of losing my job.” Here for the first time was an expression of what it has been like to stand on my tiptoes, peering through the looking glass at a life less vexed.

Living a non-neurotypical life

At the age of 19, I was diagnosed with bipolar disorder. I was born this way – I like to to think of myself as 'neurologically distinct'. At the time I didn't quite understand that this thing I 'had' was permanent, and wielded the power to destabilise every facet of my existence and even end it. I will soon turn 27, meaning I have been treatment compliant for eight years. I am still what would be termed 'ill' by many physicians and probably always will be to some degree.

Two weeks ago I made concrete plans to end my life, very narrowly averted by a parent. In the midst of a severe depressive episode, triggered by the emotional stress of a divorce, I grew frustrated and found myself exhausted. But by what?

For those of us with a 'mental illness' or a set of behaviours that are classed as atypical, navigating everyday life is tiring. In my case, the combination of orientation and treatment makes my life an often treacherous and arduous task to execute.

This is because I cycle frequently between a state known as hypomania and acute depressions, with co-morbid anxiety disorder. Sometimes these depressions hum at a moderate level but last for months, or they can be fast, hard and life-threatening. It is rare that I get a substantial plateau between the two.

Hypomania for me is characterised by periods of extreme exuberance, mental confusion, heightened senses, indiscriminate hyper-sexuality and inappropriate behaviour, ill advised spending, racing and intrusive thoughts, insomnia, rapid talking, body pains and shakes, muscular tension and spasms, grandiose plans, rash decision making and abuse of substances (particularly alcohol).

My depressive episodes are characterised by mental confusion, inability to cope with stress, “brain fog”, clumsiness, weepiness, acute feelings of insoluble distress and despair, self injury, inability to focus, a radically increased need for sleep, bone-deep fatigue, slowed physical movements, substance abuse, a non-existent libido and suicidal plans and attempts.

Anxiety disorder looks as it sounds – when it peaks, I find it incredibly difficult to leave the house, answer the phone, fill out forms, or function in social settings. I have panic attacks that pin me to the bed, paralysed, like a heart attack thundering through me.

Un-medicated, I cycle between a hypomanic and depressed state a few times each month. On a  dose of lithium – a medication it took doctors years to prescribe – hypomania is largely dampened to a manageable level and my cycles are elongated.

However, I am yet to find a treatment that deals with depression effectively. The side effects of my medication include weight gain, lowered libido, drooling, extreme thirst, added mental confusion, clumsiness and very noticeable hand tremors. Of late, the tremors have become a rattle that I feel through my neck and head all day long.

But how does this manifest as a lack of privilege?

What I am about to describe is not something rare or particular to my experience. Nor is it a particularly severe case. The explosion of mental health blogging on the internet exemplifies the everyday struggles the non-neurotypical community faces. Our wiring means that we are presented with an array of challenges in negotiating a system constructed for those unlike us.

I find it difficult to obtain and maintain work because of being differently abled. Assuming I can get out of bed to turn up, my symptoms and my medication mean I am often confused, physically shaky and slower to move than most. This greatly effects me in physical jobs like waitressing.

Once I had a boss who was so frustrated with me spilling lattes that she banned me from carrying coffees to tables anymore. Fair enough, but mortifying for me. I am often in awe of my neurotypical friends and their ability to handle the stress of a full time job, a partner and/or a family.

In white collar jobs requiring a great amount of attention to detail and multi-tasking, I am also at a disadvantage. Mental confusion and an inability to manage stress means I am often overwhelmed and weepy in situations where neurotypical people would be more likely to be confident and would excel.

I learn more slowly as well, despite being quite 'bright', as both my illness and medication create a haziness in my processing abilities. I need to be shown a task quite a few times to be able to execute it properly.

My inability to hold down a job for very long means I'm almost always poor. I haven't had more than $1500 in my bank account in my entire life. Looking for work is also difficult – anxiety disorder and forms are fairly incompatible.

I am also unwilling to disclose my illness in my workplace, as 'mental health issues' are heavily stigmatised and not often well received. In the one or two jobs where I have mentioned that I had Bipolar Disorder, it noticeably changed the attitude of my co-workers and bosses. The sickening fear of people 'finding out' in a professional setting is difficult to convey.

I am unable to maintain romantic relationships for very long without my illness affecting the dynamic. My hand tremors and physical scars from the compulsion to self injure engender unwanted pity in potential sexual partners. It can lead to awkward conversations as I try to hide the evidence – why won't you take off your skirt? Gosh, why are your hands shaking, are you sick?

My shifting mood states means some of my partners find it difficult to trust me, and they sometimes become drawn into a caring role, which they can resent. The most significant adult relationship I have had to date was marked by a cycle of care and blaming, and ultimately a deep anger towards me. Many of my friends have also assumed the role of a carer, and having a family member so often in crisis has had a significant impact on my parents and brothers.

Within the community, my often erratic behaviour and cycling mood states means I am regarded with suspicion, pity, contempt or amusement. I am routinely disliked for being non-neurotypical, though usually I'm told that it is my 'personality' that is the problem.

Unlike neurotypical people who are usually able to control their impulses and conduct, I'm often unable to. I've many a social misstep to cringe about. Pegged all too regularly as the 'odd' ones, neurologically distinct people can be bullied and derided for that which is out of their control, no matter how much they may desire it be within it.

Most neurotypical people feel confident that their ability to parent children, and possibly to physically bear and birth them, is above questioning. When I wish to have children, I will have to first withdraw from my medications and live through the horrible effects, be watched by a psychiatrist throughout my pregnancy in case I succumb to a psychotic state, and then be monitored closely afterwards for post-partum psychosis or post-natal depression.

I will be warned frequently that I may be a danger to myself and my baby and it will likely be suggested that I consider not having children at all – due to the high risk of passing on Bipolar Disorder to my child or being a sub-standard parent, given the erratic nature of my illness. There is very little chance that I would be considered a good candidate for adoption. This is a common struggle for women with Bipolar who wish to have families, and a particularly heart-wrenching one.

This is not to mention that most neurotypical people can generally expect their feelings to be taken seriously by others and not be constantly relegated to just a function of their mood; or that a neurotypical person can expect doctors to give them treatment options rather than patronising ultimatums. They can expect, if they fall ill, that others will believe they are ill – and not tell them they are 'imagining it'.

Most of all, neurotypical people can expect that they will be not be treated with hatred or even violence just because they are neurotypical. They can expect that people will refer to them with respect, and not with language that denigrates and derides. They can expect that people won't grow wary, angry or violent. They won't be ostracised because they involuntarily behave in ways that are neurotypical.

My story, on balance, is rather mild. I have heard many worse. Rates of homelessness, suicide and alcoholism have been reported to be much higher in those with atypical neurology and this is, I believe, not just a result of our orientation - it is because we exist in an system set up to punish difference, and reward conformity. Deviations in behaviour and dissent from what the dominant model of 'normalcy' is are met with social consequences, and those who can successfully 'norm' are rewarded and afforded higher status. Unless, of course, you can keep your neurological orientation well hidden – and many choose this path.

How should we use information about privilege?

Just as with many other sites of privilege, neurotypicality is something that is generally invisible to those that have it but very obvious to those that don't. Most invisible, I believe, is the admirable amount of work we put in to make our lives manageable.

Despite many challenges, those of us who are 'mentally interesting' often toil diligently to negotiate our symptoms, work with our treatments, hold down jobs, maintain families and reclaim self respect in a system that tries very hard to convince us that we are difficult and different beyond repair.

The 'Mad Pride' movement that began in London and has now spread far beyond it, is an example of our community championing our autonomy and dignity. It rejects the idea that those who are atypical need or want pity. The message is that people who are neurologically distinct are resilient and proud, despite massive hurdles. This too is a manifestation of the advantages of 'norming' – there is no need for a 'Neurotypical Pride' movement.

Having privilege, as the Square 8 blog states, is not an inherently bad thing. After all, just as I did not ask to be born with Bipolar Disorder, you did not ask to be born without it. It just happened that way. You are not a bad person because you have privilege. You are just more fortunate – through no fault of your own. This fortune, however, leads to ancillary questions about how to use it.

The real power comes in acknowledging that you live in a world set up to cater for you much more fully than for those of your friends and family who are atypical, and making decisions to work diligently towards change.

This can be as simple as adjusting your language and behaviour to be more embracing and actively sensitive – thinking before you speak. It could be you having solidarity with an atypical friend during a bout of illness or taking an interest in mental health policy during this Federal election. It could be as far reaching as you getting involved in advocacy and working alongside the neurologically distinct community on objectives they think are important.

Most of all, a recognition of privilege should be a catalyst for a fundamental change in mindset. Not from indifference to pity – which is patronising and unwelcome - but something else entirely. A recognition of neurotypical privilege should evoke a yearning for decency and fairness, and a recognition that if you were in our shoes, you would want things to be easier too.

Recognising privilege ignites the fire for change and partnership between communities – and it can start with you.

Sarah Langston is associate editor at The Scavenger.

If you are suffering from depression, contact your local support group or organisation in your area. The following link provides details of some online forums around mental health:

http://depression.about.com/cs/chat/a/onlinesupport.htm


 

 

 

 

 

 

 

 

 

 

 

 

 

Comments   

0 #4 Ceausescu 2012-09-13 09:37
You said that the current society promotes conformity and punishes difference. But you don't include the traditional medical system into your view.

In my view, especially in the case of mental health issues, I think that traditional medicine, along with other institutions, authorities, and culture play a primordial role in sustaining this punishment of difference.

Another thing that stroke me was the fact that you consider yourself different, but you still try to fit in this society that promotes conformity and punishes difference. That doesn't make sense at all to me. And I'm sure it doesn't make sense to you either. I think you trying to conform is a determinant in your anxiety.

I don't know if you've ever heard about cognitive dissonance. It's when you have 2 paradoxical thoughts. In the example from above, it's clear that it's a cognitive dissonance. First thought: "This society punishes me for being different and rewards people that conform". Second thought: "I have to try to fit this society because I don't want to be poor and single".

And cognitive dissonance gives anxiety. Usually, people try to balance out their cognitive dissonance by modelling one of the 2 paradoxical thoughts. In your case, you probably don't really get to a balanced view, because of the mood swings.

I don't want you to feel judged, but I think that your health "issues" are largely due to external factors and inability to adapt to the current society.

I don't like the values that this society promotes either. And I sometimes get instances of cognitive dissonance which make me anxious and sometimes depressed.

Actually, before using drugs such as Cannabis ( almost daily ) and Magic Mushrooms ( once a month ), I had many mood swings including depression, mild hypomania and many other behaviors that traditional medicine would consider mental troubles.

I can only imagine that if I were diagnosed with bi-polar disorder when I was 18-19, my ability to cope with myself and the environment would have escalated.

However, I was lucky, as you said, and I met a girl who changed my perspective on life when I was 21. We're still together now ( I'm 24 )

And drugs too have given me a new perspective on life. Cannabis, for example, works as a regulator of neurotransmitte rs in the brain. It can also "expand" your mind by giving you different perspectives. Compared to magic mushrooms or Ayahuasca ( plant based brew made by shamans in the Amazon indigenous tribes ), it is a mild psychoactive drug. But any person reacts differently to it, so I wouldn't be surprised if even Cannabis would help you.

With regards to a "heroic" dose of mushrooms ( 7 grams ) or an Ayahuasca brew, I bet my life that it would help you.

The only advice I could give you, based on my personal experience and knowledge, is that you should these "different" drugs. Natural drugs, to be more exact.

I'd see Ayahuasca ( DMT brew made by shamans in the Amazon's indigenous tribes ) or magic mushrooms as potential replacements for your current drugs.

But you could first try Cannabis and see how it works if you never tried it, or haven't tried it for a long time. It might amaze you.

Even if you already tried Cannabis a long time ago and it didn't help you, try it again with different expectations.

And don't conform. The urge to somehow conform and manage to live in this society is your smooth criminal.

If I were you, I'd move to the Amazon forests for a period of time and live with the indigenous people from there. "Medicate" with Ayahuascas and learn basic survival.

I wrote a wall of text so I'll stop here.

Conclusion is: you couldn't adapt/conform to the current society/environ ment like the majority. The society then, with its culture and values, escalated your inability to adapt/conform.

So:

- don't try to conform in any way, unless it seems natural and doesn't create anxiety, haziness and all the symptoms that you described

- try replacing your current drugs given by the traditional medical system with natural, psychoactive drugs such as cannabis, magic mushrooms or Ayahuasca

- this society harmed you, so you might as well try live for a period of time in a different society with a different culture, values etc. The tribes from the Amazon's forests are a good example.



I wish to you cognitive balance.


Andrei.



P.S. Don't feel as I judged you or something like that. My purpose was to bring you a different perspective and, hopefully, help you somehow.

And please don't denigrate my perspective. Even if you're against natural plant based drugs.

This denigration would be a defense mechanism in order to keep your current view of the world.
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0 #3 Ollie 2011-05-15 16:45
Thank you for the brilliant article! I would also like to say thanks for mentioning other types of neural conditions as you talked about your own experiences with your own 'neurological distinctions' - it gives off a feeling of understanding and solidarity for all atypicals. I have ADD, and sometimes when our community discusses issues like these, I feel as if my condition is seen as "not as bad", whether it really is or not. It's just different, a different set of challenges. However not so different, as I find myself relating to many of the difficulties and discrimination you face. Anyway thanks for sharing your story, it gave me a better understanding your neurological distinctions and gave a lot of great information and perspective.
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0 #2 Dee 2011-01-25 16:58
Thanks ! I too suffer from depression and found your article hitting a nerve. I have been very lucky in finding a supportive partner (16 year this Feb) and have found that being upfront with my employers has worked for me. I guess I'm very lucky. I told my employer that I can give 100% 4 days a week; push me to 5 and I will not cope so welll. They have been very supportive of this and I work hard to make sure I do a fantastic job giving all I can give on those 4 days.
I also have a beautiful 9 year-old daughter who, as she gets older, has asked lots more questions about my depression and we have always been honest with her explaning that mummy isn't always happy and it has nothing to do with her behaviour. It has to do with the chemical imbalance in her brain that makes me sometimes sleep for long periods of time or "snap" for no reason.

So don't give up hope, there are great people out their having a family and living a "normal" life. It is possible even if it is hard work for all of us. I believe I speak for my whole family when I say it's all worth it.
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0 #1 Dianne 2011-01-25 08:19
HEAR HEAR!
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