Mental health is a privilege
- Published: 14 August 2010
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If 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: