«I Haven’t Told Them, They Haven’t Asked: The Employment Experiences of People with Experience of Mental Illness Written for the Mental Health ...»
I Haven’t Told
The Employment Experiences of People
with Experience of Mental Illness
Written for the
Mental Health Foundation of New Zealand
by Debbie Peterson
Mental Health Foundation of New Zealand
PO Box 10051, Dominion Road, Auckland 1003
81 New North Road, Eden Terrace, Auckland
Phone 09 300 7010 Fax 09 300 7020
Photography: Mark Smith
All rights reserved. No part of this resource may be reproduced without written permission of the publisher, except as provided under New Zealand Copyright law.
© 2007 Mental Health Foundation of New Zealand I haven't told them, they haven't asked: The employment experiences of people with experience of mental illness ISBN: 9781877318467 (Paperback) I haven't told them, they haven't asked: The employment experiences of people with experience of mental illness ISBN: 9781877318474 (PDF)
I Haven’t Told Them, They Haven’t Asked:
The Employment Experiences of People with Experience of Mental Illness 2007 Written for the Mental Health Foundation of New Zealand by Debbie Peterson Acknowledgements There are many people we would like to thank for their contributions to this research – in particular, and most importantly, the research participants. By allowing your stories to be shared you will hopefully inspire other people with experience of mental illness to participate in employment, and, where necessary, challenge discrimination.
We would like to thank the interviewers, Eileen, Hariana and Matt, who approached the challenges that this project involved with enthusiasm, and did a great job of enabling the participants to tell their stories. We also acknowledge Temp Solutions for their role in finding the interviewers.
Others to be thanked include Chloë Duncan and Kathryn Nemec for taking the literature review to completion and Lynne Pere and Paul Thornton for their work on the earlier drafts of the review. Fiona North for her advice and extensive contribution to the writing process.
Jenny Heine for editing the final report. The staff of the Mental Health Foundation, including Catherine Williams, Marika Puleitu and Bernie DeLord, who organised, transcribed, commented, generally supported and contributed greatly to the final product. And, finally, the Ministry of Health that funded the research as part of the Like Minds, Like Mine campaign.
The title The title of this report is a quote from one of the research participants. It raises the issue of disclosure of the experience of mental illness in the workplace. Under the Human Rights Act 1993 it is illegal for employers to ask a prospective employee about their history of mental illness for the purpose of negative discrimination.Legally, employers may not ask, and there is no obligation for an employee to tell.
The responses to the question on disclosure were the most varied of all those raised in this study. Some people firmly believed that disclosure was necessary and a good tactic to avoid discrimination, others felt that it encouraged discrimination. Some believed that employers had a right to know, others that it was none of their business.
The title quote may also be seen in the light of another, related, issue. Many of the participants in this study dealt with discrimination by leaving their employment, without stating the real reason why. This highlights the responsibility of employers to continue to challenge themselves about whether they are providing an environment where employees can contribute fully, and challenges employees to address discrimination when it arises.
For many years I suffered from a severe and continuous nervous breakdown tending to melancholia – and beyond. During about the third year of this trouble I went, in devout faith and some faint stir of hope, to a noted specialist in nervous diseases, the best known in the country. This wise man put me to bed and applied the rest-cure, to which a still-good physique responded so promptly that he concluded there was nothing much the matter with me, and sent me home with solemn advice to “live as domestic a life as far as possible,” to “have but two hours’ intellectual life a day,” and “never to touch pen, brush, or pencil again” as long as I lived. This was in 1887. I went home and obeyed those directions for some three months, and came so near the borderline of utter mental ruin that I could see over.
This quote encapsulates the value of employment – purpose, independence – and highlights why lifting the barriers to employment should be a focus for social policy.
Access to paid employment and positive experiences at work are important components of life and need to be available on a fair and respectful basis. As the earlier report ‘Respect Costs Nothing’ showed, prejudiced attitudes and discrimination percolate the lives of people with experience of mental illness. We know from research that the public’s attitudes may have improved over the years but behaviors and practices still need to change if we are to create a nation that values and includes people with experience of mental illness.
This original New Zealand research gives more than a glimpse into people’s lived experiences and in so doing gives a good basis for proposals and recommendations for improvement.
We acknowledge those who took time to give their personal accounts and commit ourselves to making good use of that in promoting the learning and recommendations contained in this report.
Judi Clements Chief Executive Mental Health Foundation of New Zealand
The aim of the research was to find out the specific issues that affect people with experience of mental illness in employment. Twenty-two people from the Wellington region with experience of mental illness were interviewed for this study.
Most of the participants reported that employment was a positive experience for them. It provided financial and social benefits, and a focus in their lives. The negative aspects they reported, apart from discrimination, were similar to those of most people’s working lives.
Mental illness affected the confidence of participants when applying for jobs, but the main effect was on people’s concentration in their day-to-day work. Most participants had become unwell at some stage while in employment, and many had left their jobs because of this. Some had been unable to negotiate accommodations with their employer. One person was dismissed from her job because of her mental illness.
Others returned to work successfully.
Most people said their employer was aware of their experience of mental illness.
Several had chosen to tell their employer when they first started their job, others were using supported employment agencies, and for some, their experience of mental illness was a requirement for the position. The employers’ reactions were mixed, with some being very supportive, others not. Fewer people had told their colleagues, fearing repercussions. Most people had felt pressure to disclose their experience of mental illness to their employers or colleagues. When asked if they would advise others to disclose their experience of mental illness, there was a mixed response.
Almost all of the participants said that they had been asked questions about their health in the process of finding work. Some disclosed in response to this, others did not.
Several people recounted their experiences of discrimination, both in applying for jobs, and from employers and colleagues. This discrimination included not being offered employment, being teased by colleagues, and being treated differently compared with workers without experience of mental illness. This discrimination also took place while some participants were working in the mental health sector. Others also reported being
discriminated against for different reasons, such as gender and ethnicity. Despite these accounts of discrimination, the laying of official complaints was rare.
A variety of support mechanisms were used by people when applying for jobs. These included supported employment agencies, mental health organisations, training courses, and help from Work and Income and friends and family. Mostly, people found supported employment agencies useful, although some participants sensed reluctance from agencies to work with people with experience of mental illness. People reported that mental health services were generally supportive of them working.
Participants reported a variety of accommodations that they had negotiated with their employers, including flexible hours and sick leave. This meant that, for some, they were able to continue working. For others, though, they were unable to negotiate the accommodations they needed, and ended up leaving their employment because of this.
The report has been supported by a review of literature (Duncan and Peterson, 2007), published separately, focusing on the issues regarding employment and mental illness.
The review gathered evidence from over 70 different papers and resources.
Previous Like Minds employment research “Respect Costs Nothing’’ findings In 2003, 785 people with experience of mental illness participated in a written survey that asked them about their experiences of discrimination associated with mental illness in New Zealand (Peterson, Pere et al, 2004). Thirty-four percent of respondents said that they had been discriminated against while looking for a job, and 31 percent said that they had been discriminated against while in employment.
The major findings related to employment were:
• Many people who disclosed their experience of mental illness to potential employers reported being turned down for a job. Others reported they had avoided this type of discrimination by not disclosing their experiences.
• Questions, pre-employment, asking people about a disability, their health history or whether they were on medication, were common.
• People had lost their jobs because of employers’ attitudes to their experience of mental illness. They either lost their job when they became unwell, or left because of the attitudes of employers or colleagues, or found it too difficult to work because of their experience of mental illness. Few people made official complaints about discrimination in the workplace.
• The attitudes of employers and colleagues could be a problem. People reported not being trusted, being considered unreliable or incapable, having difficulties with colleagues, or not fitting in. Sometimes these problems escalated, leaving the person concerned feeling hurt or unwell.
8 I H AV E N ’ T T O L D T H E M, T H E Y H AV E N ’ T A S K E D
• People with experience of mental illness did not always get the same reasonable accommodations as others in the workforce. In order to obtain reasonable accommodations, disclosure is required, leaving people vulnerable to discrimination.
• The encouragement and support by mental health services for people with experience of mental illness to gain employment is likely to improve their experiences of obtaining and remaining in employment.
Employers’ research findings The 2005 report Employer Attitudes and Behaviours Relating to Mental Illness (Lennan and Wyllie, 2005) summarised research undertaken on behalf of the Ministry of Health questioning 25 organisations about their practices and attitudes as employers with regard to people with experience of mental illness.
Employers expressed several concerns about hiring people with experience of mental illness.
These included fear based on a lack of understanding and not knowing what a person with experience of mental illness might do, worry that such a person may not fit into the organisation, safety issues, and a fear that they may affect the productivity of the organisation.
Many of the employers interviewed had experience of employing a staff member with experience of mental illness. The majority reported positively handling times of unwellness by these staff members, supporting them through the period of being unwell, and reported good outcomes.
Some reported a less positive outcome, however, with the person concerned not returning to work, citing lack of communication and support from caregivers or mental health services. The employers indicated that they would have continued to employ the person had these issues been resolved.
The research reported an apparent inconsistency. Employers were often reluctant to employ someone who disclosed experience of mental illness in an interview, but if a person became unwell while working, the emphasis would shift to trying to retain valued staff, including employers going out of their way to make reasonable accommodations.
Literature review A review of the international literature relating to employment and people with experience of mental illness was undertaken as a forerunner to this current study. The results of that review are summarised in the next chapter, and are published as a separate report.
9 I H AV E N ’ T T O L D T H E M, T H E Y H AV E N ’ T A S K E D
INTRODUCTIONResearch question The findings of the three studies outlined above – the survey of people with experience of mental illness, the study of employers and the literature review – suggested further in-depth information was needed about the discrimination in employment experienced by people with experience of mental illness. This led to the development of the research question.
The research question for this study was: What are the specific issues that affect people with
experience of mental illness in employment? In particular:
• how does discrimination manifest itself, and what affect does it have on people’s employment?
• what affect does mental illness have on employment?
• do people with experience of mental illness disclose their experiences to employers, and what affect does this have on their employment?