Learning by Experience: Disabled students and staff: disclosing disability

Learning by Experience is a new section showcasing recent research in social care.  It will focus on research in important areas of social care and social work which contributes to the evidence base for practice. The research discussed in Learning by Experience can be anything from a small research project undertaken by a practitioner working on the front line to a major piece of academic research carried out by a university.  Anyone who would like to contribute should first read our detailed guidelines, which can be found here

To disclose or not to disclose? – the question disabled social work students and practitioners must ask themselves.

How should the social work profession reconcile adopting a positive approach to including disabled people with meeting the increasing concerns about professional fitness to practice?  This is an important question given the recent implementation of the Disability Equality Duty which requires employers to promote disability equality at the same time as high levels of stress are reported within the social work profession generally.(1)  

The role of regulatory bodies, like the General Social Care Council, as gatekeepers for the professions has become increasingly prominent following high profile cases concerning ‘dangerous professionals’ such as the doctor, Harold Shipman, and the nurse, Beverley Allitt.  As part of its formal investigation into fitness standards in the professions in 2006/07, the Disability Rights Commission asked researchers at the University of Central Lancashire and King’s College London to undertake a study of professionals’ experiences.(2)

All social workers are now measured against ‘fitness standards’ (explicit or otherwise) when they register with the relevant regulatory body and when they apply for a social work course or job.  While some information is available from references and physical health checks, for those with unseen disabilities, the application of fitness standards may rest on their own disclosure.  It is therefore often a key element in the process of measuring individuals against professional fitness standards and if adjustments and supports are to be tailored to meet individuals’ needs. 

In practice, how fitness standards are perceived often acts as a barrier to disclosure.  Research identifies that feeling stigmatised by labels, and the fear of being seen as ‘not coping’ or as somehow ‘intellectually inferior’ act as major barriers to disclosure (3).  While one study found that some disabled students viewed their disability positively in the context of disability rights legislation and saw it as ‘opening doors for them’, others are reluctant to assume ‘disability identity’ (4).

Our research captured the views and experiences of disclosure of 60 disabled students and practitioners in the professions of social work, nursing and teaching and considered what would help disabled students and professionals to disclose (5).  This article draws on the main findings, focusing on the views of 20 social work professionals from England, Scotland and Wales. 

EVIDENCE FROM EXPERIENCE

Disclosure involves providing information about impairments or long term health conditions and may be in response to a specific question such as ‘do you have epilepsy?’ or ‘are you dyslexic?’  In some cases, information may be requested about how impairments affect the individual.  It is not the same as ticking the ‘disability box’ on an anonymous survey or equal opportunities monitoring form, and is an irrevocable step.  Often, it is not a one off event but a series of steps or negotiations. 

Some individuals had no choice about disclosure, for instance, they had had a period off sick followed by a doctor’s note or the acquired disability was a visible one.  For some, it was a clear cut issue, a matter of principle to disclose when they applied for courses and at the start of their employment. Others didn’t disclose for fear of negative consequences.  When disability occurred later on, students and professionals were faced with a decision of whether and what to disclose about their impairments or long term health condition, and had to weigh up how this might impact on how they were perceived.  In practice, most had disclosed although not always the full extent of their disabilities.  They reported positive, negative and mixed stories of their experiences. 

There was evidence that being aware of disability rights legislation had increased confidence, making people more likely to disclose, and empowering them in negotiations concerning adjustments:

It gives me confidence that I can disclose, I can tell them that I know that I’ve got legal backing should I need it and I’ve got some legal rights that they can’t discriminate.  They can’t turn round and say, ‘you’re not fit to practice’. Social Work Student

A particular challenge for student social workers was being faced with the decision to disclose every time they started a new placement.  Disclosure can feel a bit like ‘coming out of the closet’: 

It’s something you’re constantly doing, you don’t just disclose it once… because you’re going on a placement, when you are on placement you might go and spend a couple of weeks with another institution, so each new place you go to, actually means is that you’re disclosing all over again…it’s on-going, it’s continuous. Social Work Student

Practitioners across the three professions of social work, nursing and teaching felt most secure in making a disclosure when they had acquired a good track record and could provide concrete evidence of their ability to do the work if challenged. 

One of the main reasons for not disclosing or giving out partial information about impairments was fear of rejection by courses or by employers.  This fear was fuelled by the general lack of information about what the consequences of disclosure might be and what support is available, especially when they disclosed to regulatory bodies:

I just thought I wouldn’t be accepted onto the course…I don’t know if that’s right or not…so no, I didn’t (disclose). Student social worker

Practising social workers claimed that not all employers were progressive, despite the existence of anti-discriminatory legislation:

Some unscrupulous managers, and there are a few around, might, or people on interviewing panels might think actually no, we’ve had a bad experience in the past or no, I think you know it’s going to be too costly from a budget point of view, or we can’t support them. Social Work Practitioner

Having mental health problems carried additional stigma, perhaps surprisingly within a profession whose role is to empower others and to focus on capacities.  One social work student who had disclosed about a physical disability but not her mental health problems commented, ‘mental illness is a different thing…it’s not something that you talk about’.  Accepting the disability label was perceived negatively as drawing attention away from what they could do to what they couldn’t do, which many wanted to avoid. 

Some people received sympathetic and supportive treatment as a result of disclosing while others experienced condescending and over protective attitudes.  One social worker talked of feeling treated ‘like a baby’.  It was disappointing if disclosure didn’t lead anywhere and needs were unmet.  One student social worker felt tutors were too busy to talk to her and interpreted their body language as an indication that they had no time for her. 

Some organisations were clearly making positive gestures and doing what they could to accommodate and value disabled social workers:

I was fortunate on placement because the local authority actually agreed to get various software for me which would alone have cost about £500 for an 80 day placement so that’s actually a commitment from that authority which I’m ever so grateful for because it means I’m here now where I am. Social work practitioner

Disability services within Universities and colleges were generally well thought of.  These services provided access to equipment, negotiated with courses and represented disabled students.  In a few instances, a delay in accessing equipment such as a PC or putting support in place caused stress for disabled students and practitioners.  Quite often the kinds of adjustments people needed either at work or at University were not extensive or costly: 

My manager overcame the problems of the phone for me, she made it possible for me.  She got the whole concept….a lot of things about people’s fitness to practice, probably is whether or not people are prepared to think through what the actual problem is and find a solution”. Social work practitioner 

While courses were generally accommodating and supportive of disabled student social workers, they sometimes encountered negative and inflexible attitudes on placement.  Students with dyslexia found the greatest contrast between their experience of support offered by Universities and that offered by placement agencies:

They knew before I went, it was all there and nothing was done and then three weeks before the end of my placement the link worker decided to make a comment about my spelling in reports which caused me a lot of distress.

Social work training programmes have only recently acquired responsibility for checking fitness to practice and may be struggling to manage this sensitively.  Student social workers were more likely than other professionals to give a negative account of their experience.  In contrast, they tended to be more aware of their rights under the Disability Discrimination Acts than other professionals and had covered disability rights on their course. 

While disclosure was at times a risky business, there were consequences to not disclosing. This included having to work harder than others to achieve the same job or qualification, and being put under additional strain.  By not disclosing, students or employees may have been missing out on support, but, as this research suggests, the fear of negative consequences can sometimes outweigh such considerations. 

IMPLICATIONS FOR PRACTICE

The research also asked ‘what should change?’ to ensure the profession becomes more supportive of disabled social workers as well as retaining skilled and talented individuals in its ranks. 

Participants emphasised the importance of publicising existing good practice, and dispelling the myth that disabled people are unfit to take on professional roles: 

Having a disability isn’t the end of the world and the Disability Rights Commission can make that positive…disability can happen to anyone’ from the richest to the poorest person…even though I do have these health problems, I still am achieving you know, getting myself into a job.  I don’t want to be on Incapacity Benefit for ever. Social Work Student

In making the decision about disclosure, individuals weigh up anticipated benefits against potential losses. A supportive environment is central. Creating more ‘disabled friendly’ studying or working environments would help increase people’s confidence to disclose.  Features of such environments included having clearly articulated and disseminated policies on support for disabled people and more attention being given to the sick records of those with long term health problems.  The presence of disabled people in the workplace, university or college was a clear signal of a ‘disabled friendly’ environment.

Employers could undertake audits of their fitness to manage and include disabled people.  Attention to accessibility in workplace environments signals a positive or ‘disabled friendly’ workplace culture.  Employers themselves may benefit from greater involvement with Access to Work and other schemes to resource ‘reasonable adjustments’.

Retaining a sense of control over the process was important.  Individuals wanted to know where their disclosure goes, who has access to it and what the consequences are likely to be.  Such information helps individuals to predict and manage the personal risks of disclosure. 

An individualised response to a disclosure was regarded as vital. Some organisations could be more proactive in asking how impairments affect the person and what they perceive to be their support needs.  An individual’s right to privacy following disclosure should be respected but they should be given the option for information to be shared with relevant staff if they wish. 

Having a key person within the organisation to offer support and advice on disclosure was important for many, especially for those whose disability came later.  This key role offers a supportive opportunity to consider the risks of disclosure as well as provide information about the process and available support. 

In common with other studies (6), this research found managers played a key role in mediating the response to an individual’s disclosure of disability.  Professionals reported varying responses and attitudes from managers. They argued that managers required disability awareness training to ensure that they contributed to a culture that supported disabled staff in the workplace. Managers need to understand their role in implementing Disability Discrimination legislation.

Despite the barriers identified many professionals in nursing, teaching and social work felt sufficiently empowered by disability legislation to disclose unseen disabilities in training and employment settings.  However, their expectations of support were not always met and, unless there is better evidence about the benefits of disclosure, professionals’ willingness to take the risks involved in disclosure may not be sustained.

ABSTRACT

Potential for conflict exists between promoting the rights of disabled people under disability legislation on the one hand, and professional fitness standards which aim to exclude individuals from professions on grounds of their ‘fitness for practice’.  This recent study for the Disability Rights Commission examined experiences of professionals and students in social work, teaching and nursing in disclosing disabilities, especially unseen disabilities. It concludes that many barriers to disclosure can be overcome by organisational and attitude change.

REFERENCES 

1. ‘Depression in the profession: social workers’ experiences and perceptions’, Stanley, N., Manthorpe, J. and White, M., 2007, British Journal of Social Work, 37, 2, 281-298.

2. Disclosing Disability: Disabled students and practitioners in social work, nursing and teaching, Stanley, N., Ridley, J., Manthorpe, J., Harris, J., Hurst, A., 2007, Disability Rights Commission.

3. ‘Life’s labours lost: a study of the experiences of people who have lost their occupation following mental health problems’, Bodman, R., Davies, R., Frankel, N., Minton, L., Mitchell, L., Pace, C., Sayers, R., Tibbs, Z. and Unger, E., 2003, Mental Health Foundation; ‘Mental health and social exclusion’. Social Exclusion Unit, 2004, Office of the Deputy Prime Minister.

4. The PEdDS Project: Disabled Social Work Students and Placements. Wray, J., Fell, B., Stanley, N., Manthorpe, J. and Coyne, E. 2005, University of Hull;  Disclosure, Confidentiality and Passing On Information., Maudsley, L. and Rose, C, 2003, Learning and Skills Council.

5. Disclosing Disability: Disabled students and practitioners in social work, nursing and teaching, Stanley, N., Ridley, J., Manthorpe, J., Harris, J., Hurst, A., 2007, Disability Rights Commission.

6. ‘Depression in the profession: social workers’ experiences and perceptions’, Stanley, N., Manthorpe, J. and White, M., 2007, British Journal of Social Work, 37, 2, 281-298;  ‘Identification of the characteristics of work environments and employers open to hiring and accommodating people with disabilities’. Gilbride, D., Stensrud, R., Vandergoot, D. and Golden, K., 2003, Rehabilitation Counselling Bulletin, 46 (3), 130-8.

FURTHER INFORMATION

The full research report is available on the DRC website

For more information contact Professor Nicky Stanley