The gap between disability employment policy and practice
I’ve just received an email from a former colleague, telling me what she said in a referee statement. ‘I talked about the value you add to a team through creative thinking and said you are that rare person who combines exceptional creativity with solid administration skills. I told them they'd be very lucky to have you’
By the time I’ve finished reading, I’m sobbing. Great heaving sobs that have woken the dogs from their various corners of the house and that have them pawing and nudging me with concern. It’s been six months since I last worked and as the rejections mount, my belief in my abilities has almost completely evaporated. At 51, I feel old, invisible, and some days wonder if I will ever work again. I feel completely defined by my disability, and in a double whammy, by my age.
My last three jobs have not ended well. This is not uncommon for someone with a mental illness. We are increasingly encouraged to be up front about our disabilities at work and to trust in the policies designed to support us, but is this always in our best interests, especially when talking about mental illness? The snapshot that follows, shows how easily things can go awry when policy is not backed up with action. And it shows how quickly the focus can shift from ‘a problem’ to the person with the mental illness being ‘the problem’.
The first experience went from one of the best jobs I’d ever had to the worst with a change in CEO. The original CEO had been a wonderful mentor and my experience of disclosing my disability had been so positive. He was supportive and didn’t shy away from the difficult conversations. I thrived and became a valued part of the leadership team. My relationship with the new CEO was difficult from the outset and I blamed myself but as it turned out, I was the first of seven employees to be bullied out the door. Before I understood how dangerous this woman was, I disclosed my disability and was assured of her support.
When I became unwell she bullied and badgered me into working when I should have been in hospital. ‘You’re not the only one who’s had a bad week’ she responded when I produced a Certificate of Sickness and told her I couldn’t travel to a regional centre for a conference. On the cusp of mania, I succumbed to her pressure and ended up in a regional hospital for 10 days. I would spend most of the next 12 months in and out of hospitals, in a year where I came perilously close to losing my battle against bipolar disorder. I have wondered more than once what the rest of that year would have looked like had I not allowed myself to be bullied into such a vulnerable situation where I descended into a messy mania 650 km from family, friends and the specialist psychiatric care I needed.
I didn’t work for a year after this and the climb back to meaningful work was tough. I did some study to keep my skills current and after doing volunteer work with a political party, I got some paid work. With a life-long love of politics and a fascination with the workings of government, this was a dream job, despite it being a low paid casual role with high expectations, and lots of responsibility. Working for an organisation with a strong focus on social justice, I felt very safe disclosing my disability. I was soon to learn that the ‘colour’ of a party makes little difference to the way people are treated. My role would change five times in 15 months and I never once saw a job description. My direct line manager was a committee whose executive had an average age of about 25 and made all decisions by consensus. Seriously. There were almost no workplace policies or procedures and certainly no disability employment policy. They presented a shiny professional front but as a workplace, they were a complete and utter basket case.
Fundamental things like payroll lacked basic procedures and I recall tearing around the city one winter’s afternoon in the middle of the election campaign. It was pelting with rain and I was chasing party members accompanying the Federal Leader in and out of media door stops. All I needed was a single signature, so that staff could get paid. Where I saw a critical issue with one of the organisation’s fundamental responsibilities (to pay staff), the apprentice pollies saw a mad woman tearing about in the rain. Being subtle was not an option. With minutes to spare, the staff got paid, and I got another notch in my crazy belt for my efforts. The committee-with-the-average-age-of-25-making-decisions-by-consensus, would always focus on the bigger, sexier political issues and their own not inconsiderable ambitions.
I had chosen to open the disability/mental illness door which had made it very easy for my serious industrial concerns to be dismissed as the exaggerations of someone whose stability was questionable. By the time I resigned, I had been placed in some incredibly compromising professional situations and was angry and reactive from the lack of support and acknowledgement of the issues. I thought about acting against a very unsafe workplace. But I knew if I did this, my disability would become a card that the party would not hesitate to play, and my health was just not up to it. I documented everything and walked away. I left the job battered and bruised. Again, I had made myself a sitting duck.
‘You need some stability’ advised my psychiatrist, ‘a very clearly defined role’, and soon after I secured a 12-month contract in a government department. I was relieved to have structure, processes and professionalism. I had learned from my last two experiences and decided not to disclose until I was sure I could trust people. After completing induction modules about disability and inclusivity and developing some relationships, I decided to discuss my disability with my HR manager and then later with line managers. I felt confident and optimistic. It was a combination of events that brought things undone. Psychiatric medication regimes can be a bit like a game of Jenga and one small change saw my pharmacological tower of blocks come tumbling down. A new drug had terrible side effects and my mood bounced all over the place. I blew all my sick leave in the first six months of my contract trying to regain some sort of chemical equilibrium.
Later, as an election loomed, the relatively easy-going culture of my department changed overnight. ‘Outcomes! Manage up!’ we were told. I really began to feel the pressure and contacted HR to discuss this. No response. Then, an unofficial merger of two programs in the name of ‘outcomes’ would essentially see me managed up and out of a position and before long I found myself with nothing to do. Absolutely nothing. Nada. I spoke to managers and still unwell, contacted HR again about my lack of leave which was by now, a major concern, as was the prospect of my contract ending. I soon discovered that having nothing to do is every bit as stressful as being overloaded and in terms of the impact on your sense of self-worth, it is far worse. As is being ignored. It happens a lot in lieu of difficult conversations. Deliver the bad news. Tell me my work is not good enough. Tell me you don’t know or you don’t have time right now. Just don’t ignore. It’s toxic.
With minimal information coming my way, a familiar pattern followed. I began to wobble and became reactive. This was the third time I had found myself in trouble at work. It must be my fault. ‘It’s not you, it’s me’ I told myself. Confused and angry, I took leave I didn’t have and never returned. The endless days of nothing to do were just too unbearable. Ten days before my contract ended, I finally received an email from my line manager informing me my contract would not be renewed. There was a brief explanation about contracts not being renewed in the election caretaker period and zero feedback. I never did hear a peep from the HR Manager, despite my efforts to communicate and address issues directly. On the very last day of my contract I crept into the office at 6.45 am to retrieve my personal belongings and return my security pass. How did I get here again? I’d had such high hopes, and here I was creeping around like a white collar criminal.
Since January, I have applied for over 30 state government positions and have had two interviews. I’m at the point where I need to question the wisdom of being up front about my disability, even in positions which actively encourage applications from people with a disability. In one interview, I was frank and honest, and we had a really positive discussion about disability, my need for flexibility and my capacity to take on leadership roles. I didn’t get the position but felt that I had been considered and heard. A month later, the same organisation advertised another role. As the position was full time, I contacted them to discuss flexible arrangements – arrangements that are theoretically available throughout the public sector. The response from the CEO, the same person with whom I’d had such a constructive conversation, was almost immediate. ‘Thank you for your email, unfortunately at this point we are looking to appoint someone with the ability to take on the full time role.’ The italics are mine, but even still. Ouch.
And it can be damned if you do, damned if you don’t. In another interview where I chose not to disclose, the head of the panel clearly smelled what she thought was a rat. She read between the lines of my resume and found the gaps due to periods of illness. She spotted a pattern of ‘declining responsibility’ which concerned her. She wanted to know why I would want to work at a lower level when I had been a manager. I gave perfectly adequate responses which were not untrue, but still she poked and prodded at the parts of my resume that did not go in nice straight lines. ‘OK, you win, that’s when I was in a locked psychiatric ward!’. I didn’t, but I wish I had, just to shut her up. I blew the rest of the interview and only just managed to get to the lift before the tears came.
‘Do you ask for feedback?’ people ask. Yes, I always ask for feedback, but when employers can’t be bothered contacting you even when they’ve interviewed you (this is quite common) the chances of getting considered feedback are pretty slim. If I get a response it’s generally along the lines of ‘other candidates more closely met the position requirements. Thank you for your interest’. I almost wish they wouldn’t bother. In a former life as a musician we called these letters from record companies ‘Dear, Fuck off’ letters.
People close say, I’ve got to ‘stay positive’. I smile, and silently scream ‘you do know I suffer from psychotic depression, don’t you?’ And of course, they do. These are the people who know just how hard I work to carve out a life that resembles something like ‘normal’ in the face of a disability that is often disruptive, debilitating and exhausting. They know how critical meaningful work is to my wellbeing. There’s no lack of love or understanding in these comments. It’s just hard. They don’t know what else to do. I don’t know what else to do. A close friend has just got a new job. It’s a next-step-CEO kind of job. Exactly where a smart, hard working woman like her should be. I feel like a really crap friend because I’ve yet to say congratulations. For her part, she’s been pretty cagey in telling me about it. The elephant in the room is that five or six years ago our ‘career paths’ had a similar shape and trajectory, and now, well now they don’t. Things are becoming really dire and I tell her that today I’ve been looking at applying for a job delivering junk mail. She knows how much I hate junk mail. It’s a pet hate. But I’m only half joking.
I still have so much to offer as an employee and as a disability advocate. But some days all I see is exclusion and that the smartest course of action is to hide my disability and quietly settle for low level roles, if indeed I can one. Getting past a whole range of assumptions about why I would apply for lower level positions is no easy task.
‘The Government of South Australia encourages and values diversity by supporting workplace cultures based on fair and equitable treatment of employees. Supporting the employment of people with disability is a key focus of our commitment to workplace diversity’ Fine sentiments and no doubt the people who wrote them believe it's that simple. But unless words are not backed up with hard targets, affirmative action and skilful performance management that addresses the difficult issues, then the dangerous and cruel gap between disability employment policy and practice will just go on and on. And it is arguably more difficult for those of us who live with mental illness and it’s not inconsiderable stigma. The reality of a life with mental illness is so poorly understood and it’s not surprising when we see financially secure actors, pop stars and athletes take up so much of the space in the mental health conversation. To paraphrase Hannah Jane Parkinson writing in The Guardian, ‘Amy Winehouse, voice of a goddamn goddess, we’ll allow. Kathy, 54, works at Woollies. Not so much’
As a single woman in her 50’s with a mental illness, who is neither financially secure nor famous, my existence is marginal at the best of times. And these are definitely not the best of times. Should I just leave the advocacy to footballers and film stars? Is disclosing my disability during the recruitment process too risky? Should I go back to the days of keeping my disability hidden? I am acutely aware that if we were all to do this, the decisions about disability and disadvantage will remain primarily in the hands of those who can afford to make them. Those who operate within a system that already actively supports them. Do I really need to choose between authenticity and survival? Maybe. If I don’t get work soon, homelessness is a real possibility.
So, to those of you in positions of influence and leadership I hope you think about how you can genuinely support someone with a disability in your workplace. And not just in entry level positions. Do you honestly look past the obvious when recruiting, and challenge your own prejudices? Are you truly willing to embrace complexity and challenge? I hope these words make you pause before you line up the next disability celebrity to deliver a dose of ‘inspiration porn’ to gee up the HR troops. Everybody’s story is important. But these stories are a small part of the picture and the space they take up in the conversation is not representative of reality. Who is not being heard? Maybe it’s someone out there delivering the junk mail in your street. If they’re humming a Cold Chisel tune, it might be me.
First published by SANE Australia, September 2018 www.sane.org.au