Hidden disability, status and power: why being “out” matters

Beginning Note: I’m using the term “neurodiversity” in this piece as an umbrella term for a set of conditions which create big peaks and troughs in someone’s level of ability, and the way they learn and think: dyspraxia, dyslexia, Attention Deficit Hyperactivity Disorder (ADHD) and Aspergers Syndrome. “Neurodiverse” describes someone who has one or more of these conditions. I know it’s quite an imposing word, but it’s a lot less cumbersome or controversial than others…

As some of you know, I have dyspraxia, and do quite a lot of awareness and advocacy work, for a range of audiences. Earlier this week I spoke at an event on neurodiversity in the workplace, hosted by a large organisation. Being the head office of one of the few remaining quangos, dealing with financial matters, it was a vast venue with glass screens, restricted areas, and a Twinings tea chest which I already know I’d like for my 30th in the summer because I’m that hip. I listened to three great presentations, one covering dyspraxia and dyslexia, one on Aspergers Syndrome by the National Autistic Society, and another by a consultant psychiatrist on ADHD. What was particularly interesting about the event, and different to many others, was the way it explored the relationship between these different neurodiverse conditions, and how people with different conditions may display some of the same behaviour (for example, tilting their head to one side excessively when listening) but for different reasons. The ADHD presentation in particular was great at correcting myths (there is very little evidence that diet or vaccines have anything to do with it), and debunking the naysayer argument that ADHD doesn’t exist because “we all do those things.” (“Yes,” said the psychiatrist. “We all have ADHD traits. We also all have blood pressure. At a certain level doctors consider someone’s blood pressure unhealthy, give it a name and treat it. Some might be overzealous in doing so. No-one claims that hypertension isn’t real…”)

The other dyspraxic/dyslexic speakers had useful insights into what employers and service providers can do to help. A standout example of what not to do came from a dyslexic speaker who described being taken aside by security at a large art exhibition and questioned over her “acting strangely” because she was confused by the layout and struggling to read the written blurb accompanying the works. Staff also refused to give her an audio-description headset without “proof of disability” –  (Yeah, I mean, who doesn’t bring their diagnostic assessment with them to a first date at an art gallery…?!)

During the later panel session I took part in, various big-business representatives mentioned their commitment to hiring neurodiverse talent. I reflected on all the things that had put me and others off the corporate milkround at university: mostly, the perception that it means doing away with your personality, and the dodgy capability measures used by some in recruitment (I’ve always flatly avoided any jobs involving assessment centres. I did once consider applying for MI6 because they’re keen on wordy, tenaciously-inquisitive people, especially neurodiverse people. Alas, I don’t think they’re quite so keen on people who are indiscreet when tipsy, addicted to social media, and whose uncles may’ve worked for the Stasi, so I decided against…). Most importantly though, I found myself wondering, if there are so many neurodiverse people doing wonderful things in the corporate world, as these organisations always say, why aren’t I ever seeing them at these sorts of events?  Why are all the neurodiverse people I see at events working in the creative industries, health and social care or education, not in business?

It’s not because they don’t exist in business. They do. Some types of big business are pretty good at recruiting neurodiverse people; sometimes even considerably “friendlier” than the public sector, contrary to image. It’s because they’re not visible. Sure, everyone’s heard of a smattering of super-rich dyslexics or Aspies: Richard Branson, Bill Gates, Steve Jobs. But between the millionaires, and the poor-and-desperate, sits a big, frustrating category of those who aren’t “out.” The ones who aren’t on the Sunday Times Rich List or lunching behind Dasha Zhukova on a normal Tuesday, but whom you’d classify as “comfortable” or “well-off” and earning significantly above average. The ones who can afford to live in a nice house, or fly around the world staying in nice hotels without too much sweat. In other words, those whose lives most people who aren’t them aspire to…

They’re not the people who tell me about their dyspraxia or dyslexia at company diversity events. They’re the ones I meet socially, or professionally, when I’m writing about something unrelated. While we’re chatting off-record I tell them about my work, which leads into telling them about dyspraxia. They tell me they have it too, or they think they might but have never been assessed. They talk about spells of depression/anxiety but it’s obvious dyspraxia and/or dyslexia is an underlying problem. For all their outward privilege and success, there’s a sense of a relief; a joy that someone else “gets it.” Sometimes, our conversation is the first time they’ve ever disclosed it to anyone, even their closest relatives or longtime partner. It’s a profound experience. And that’s the problem. Where I was once flattered to be confided in, now I feel frustrated and tired. I’m a writer, not a free counsellor you can bare your soul to over a drink and then palm off afterwards at your convenience. Listening to other neurodiverse people open up and then withdraw has sometimes felt to me like how I’d imagine it must feel being in a same-sex affair with a closet-case. Knowing that someone is neurodiverse, when a mutual friend who’s known them nearly half their lives seems to have no idea, and mentions they can find them hard to get on with, is awkward. It leaves me torn between wanting to say something, not wanting to out of respect for privacy, and trying to imagine the reaction if I did – most likely, amazement: “Gosh! Really?! I’d never have guessed it of someone like that!” No – because the people “like that” who have it don’t want to talk about it. People “like that” overcompensate with bluster and bravado; by having unrealistic expectations of others as well as themselves, or they go into denial. Then when their lives have hit the fan, they find me. Then when things are better again, they remember they’re too important for me and for all that nonsense, and I’m forgotten…

Powerful people’s reluctance to be open about their neurodiversity comes down to perceptions of corporate cultures and prejudices: of the idea that any human diversity is somehow a failing; a source of shame, or a private matter. How much of our personal identity to reveal professionally can create dilemmas for anyone, neurodiverse or not. But the idea that someone’s private life should always be left at home, is, frankly, rubbish. For better or worse, just as the personal is the political, public and private are inseparable to a degree. Your personal identity has probably in some way influenced nearly every decision of your adult life. You being you and bringing bits of you into your work doesn’t always detract from the quality, it can even enhance it: An actress I once knew played the lead in a state-of-the-nation play about a woman confronting her estranged father just before her wedding. The fact that her own father died when she was very young, and that she herself was about to get married, made it an especially poignant, effective performance. Similarly, one of the most memorable moments of Gareth Malone’s The Choir (the recent TV series where he formed workplace choirs) was a touching scene where a Greek-American bond trader at an investment bank described emigrating to the UK after coming out to his parents at 25. It made bankers seem human, which, I’m guessing, was good for his organisation and for an industry which currently needs all the help it can get in the image department. OK, sexuality and neurodiversity aren’t completely analogous: being gay isn’t an impediment (except to reproducing, which isn’t expected of you in a workplace unless it’s a very strange workplace…). Neurodiverse conditions are an impediment if they aren’t managed properly. But if you’ve succeeded in your field then you’ve proved yourself, and it shouldn’t matter to you what anyone will think if you disclose. What does matter is that you recognise you are one of the lucky ones. That there are many neurodiverse people who don’t succeed, because of lack of support, and the many problems that intersect with disability: lack of money, social networks and confidence. And you are their hope.

I know I have it lucky in many ways. I’m fortunate enough that, by and large, the way I look and speak, and my age (approaching 30: neither too old or too young to matter…) make people more sympathetic towards my difficulties than they might otherwise be. My family have been broadly supportive of my diagnosis and of me financially through troubled times. But my relative privilege can also mean people don’t see where I lack privilege, and expect more of me in some situations than I can deliver (I compare myself to people who write, hold down powerful day-jobs and have families, and feel hopeless because I can barely do one of those….). I’m female, I went to an ordinary grammar school, I have no family connections in my field of work so have had to make my way entirely off my own bat. I had a bad workplace experience largely because I felt I needed a job that paid a living wage straight away after university, and didn’t see months or even weeks of free interning on my parents’ dime as being an option. I took a well-paid job which had “writer” in the title, ignoring various warning signs, and struggled when writing turned out to be less than 5% of it. My struggles have made me want to use my strengths and advantages for the good of others wherever I can. I understand people’s gut instinct not to want a label – I fought against it myself, until my late teens and early 20s, when trying to cope with an unnamed “it” became too much and I realised the “it” needed a name if I was ever going to live a contended, functional adult life. But my life – and many others – would be easier if successful professionals with neurodiverse conditions were more visible, doing for neurodiversity what those like Alastair Campbell (for all his faults) have done for mental health. And it bothers me that some people whose immense privilege takes the edge off their condition seem to see it as irrelevant (David Cameron is reputed to’ve said he doesn’t see dyslexia as a problem because the dyslexics he knew at Eton all manage fine. Funny, that…)

The bottom line: Those of you who can hide your neurodiversity because you’re wealthy, well-connected and started your career during the boom years; you are the ones with the power, and you are making life harder for everyone else while you keep quiet. So I ask, if you are privileged and neurodiverse and don’t talk about it openly: please, start talking. Accept that your neurodiversity explains part of who you are, and that to never let it define you is a luxury others don’t have. Accept both your good fortune and your misfortune, and let them inform how you live. Use your position – your time, your money, your social connections – to help those who lack everything which allows you the freedom to be who you are. I’m meeting great people all the time; some of whom fit the category I’ve described above and are doing just that. Exciting schemes are afoot. But we could do so much more if more people stepped up…

Be content as you are, be genuine, and be open. It matters.

Endnote: Sorry this is so long. It has taken me many hours to edit and it would probably take many more hours which I don’t have in order to trim down. To be quite clear, I’m not trying to bully or force anyone into disclosing a condition, and I’d never condone those things. I can completely appreciate that disclosure is sometimes hard. I wrote this to encourage it, and as a reflection on why it’s necessary.

Edited to add: [1/2/14] Hooray! Today I had an exciting email from one of the audience at my speaking engagement, who works for a prestigious area within UK government and is interested in me advising them on dyspraxia and recruitment issues. Watch this space…

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6 thoughts on “Hidden disability, status and power: why being “out” matters

  1. There’s many thoughts I had, but I’ll just leave you with 2:
    – Branson, Gates, Jobs: all self-starters. Might have been rubbish in normal employment. Also, indeed these 3 are not representative, just like Damian Hirst’s sales is not representative for all artists (if it were, I’d like to know where I can collect my millions).
    – I compare myself to people who write, hold down powerful day-jobs and have families, and feel hopeless: reassess your peer group. Pick us, for example. I’ve got a day job, but hardly powerful (and people have laughed about my wages), we don’t have any kids. Meanwhile, we do admire you too – see you as a peer, but also as relatively successful as a writer (wow! has been in the Guardian!). It’s all a matter of perception, and also depends on how you define/want to define your happiness.
    – Count your blessings. Somewhere in London there’s a woman in a powerful job, with a family, who is jealous of you. She’s earning well, but spends it on child care, has a mortgage that’s strangling her, and hardly sees her kids and husband. She hardly finds the time or energy to write. She sees you living with your parents but thinks: “and they are swell parents!” (I know that everyone was on best behaviour, and nobody is perfect, but you’ve got basically a good set). I think that the people you compare yourself with – those that manage to keep all those plates spinning and have a genuine smile (not just a rictus or medicated grin) are as scarce as the Bransons and the Gateses…
    (this rambled on longer than I wanted too, and apologies for any soapboxing or lecturing).

    • Thanks so much for the thoughtful comment, Rem. Very kind 🙂 You’re very right about Branson, Gates etc – self-employment is rated highly among neurodiverse people as is often remarked upon.
      This:
      …a woman in a powerful job, with a family, who is jealous of you. She’s earning well, but spends it on child care, has a mortgage that’s strangling her, and hardly sees her kids and husband. She hardly finds the time or energy to write…
      leaves me with so many feelings I largely can’t go into here. You’ve reminded me of a similar conversation I had with someone a couple of years ago about a woman of that description. It’s hard to imagine how someone like that could be possibly jealous of me. Actually, it’s fundamentally hard for me to see that I affect things at all sometimes. But I’m trying to get better at seeing it, for many reasons, and it’s very nice of you to say. Xx

  2. I agree that visibility is important. Unfortunately whether it’s right or not, disclosing a disability can negatively affect how your are perceived in the eyes of others. That may not be so easy for people in an economic environment where job security is fragile at best.

    • Disclosure certainly can affect perception. It’s less and less likely to the more senior you are and the more capable you have proven yourself to be, and those are the sorts of people I’m referring to here. But it’s not cut-and-dry I know.

  3. I’ve been meaning to reply to this for ten days but could never get in the right frame of mind to add anything useful. But I’ve been turning it over a lot and I think that, the problems of disclosure notwithstanding, it would make a huge difference if at least people who’ve risen high in their professions could be out – people who don’t necessarily face the same risks as those at the beginnings of their careers.

    Not the same thing, but I saw (and linked on Twitter) a post by comics artist and writer Colleen Doran, who’s decided to go public about her struggles with brain fog caused by other medical issues. She’s very much someone who other people look up to, who’s had a decades-long critically acclaimed career and worked with the best in the business, but she explained how brain fog has affected her productivity, lost her work, and harmed relationships with clients, and it struck me that even at her level, there was a definite risk to speaking openly. But it seems that on the whole, we need people to do this, and I’m very glad she did. I would hope that it will also contribute to understanding of her particular issues among people who would work with her, but also that it will help make space in people’s minds for the fact that there are people in the industry who are dealing with these very challenging factors, but who ARE working and can work – and that it’s not just stuff that can be solved by bootstrapping.

    • Thank you so much for posting this. Agree with every word. And thanks for the tip-off about Colleen Doran – I shall have to look her up and add her to my list of “People I Need To Link Up With.” Xx

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