Earlier this year, researcher Hannah Saunders interviewed a number of adults with a visible difference about their experiences in the workplace. This included adults born with a cleft lip. The aim of the project was to find out more about whether or not the law does enough to promote the equality of people with a visible difference. Read More.
Now that her project is complete, Hannah was kind enough to send through the following summary of her findings.
Seventeen interviews were included within the project. The results set out below are a summary of themes across all of those interviews.
Theme 1: Me and visible difference – a complex equation of how I feel
Issues of confidence appeared to be interwoven into the participants’ experiences with other factors in a way which is impossible (and probably undesirable) to completely detangle. Almost everyone expressed feelings of low confidence and / or self-consciousness related to visible difference at different times of their life. But there are various factors which some people believed impacted on the way they felt – such as fluctuations in the severity of their condition, self-acceptance, gender, age and level of job experience. There was not one unified picture of ‘what helps’ and ‘what hinders’.
What the accounts did suggest, though, is that visible difference cannot be understood as an isolated, sole determinant of people’s experiences; the importance of other aspects of life – such as friends and family, pride in one’s job and in one’s own skills, or a role helping others – are also integral to the experiences recounted.
Note: This ‘complext equation’ was something explored by CLAPA’s Adult Services Team in their panel discussion on self-esteem.
Theme 2: Me, you and visible difference – balancing coping and explaining against privacy
This theme relates to how people cope with having a visible difference in their daily lives. People talked about a variety of proactive and reactive coping strategies – such as explaining, hiding one’s difference or insecurity, and taking support from relevant charities and others in a similar position.
Sometimes coping strategies seemed to focus more on self-protection – such as applying for manageable roles, or avoiding jobs where appearance matters. While explaining is a common strategy, it wasn’t always simple; people often factor in various different things when deciding whether to ‘explain’ their condition to others. Some people seemed to feel a conflict between a desire to explain and a resentment about having to, with the privacy sacrifice this involves.
Theme 3: Me, visible difference and work – my health needs and my job in conflict
This theme relates to the tension between what people felt was good for their health, and what they felt was required for their jobs. People often felt conflicted between the two, or forced to prioritise one over the other. This was particularly evident in dealing with sickness and fitness to work procedures, or in balancing role requirements against health considerations.
Theme 4: Me, visible difference and society – feeling that I fall between the cracks
Many participants seemed to feel that their condition made them fall between the cracks. Legally, not everyone knew much about the law, and people were often reluctant to identify as disabled because disability was seen as something which hindered one’s abilities. This created a dilemma for many people on whether to disclose a condition during recruitment – people were divided not just on whether it is in their interests to disclose, but whether they are legally allowed, or legally obliged, to disclose it. Some wanted employers to have a more flexible approach to health, rather than a tick box ‘disabled or not’ approach which exacerbates this dilemma because they don’t feel they fit squarely into either box.
In health terms, the feeling of falling between the cracks related to both a lack of understanding about some conditions and, for some, a need to battle for treatment because their condition is seen as ‘cosmetic’ or given low priority for care. Many people factored in that ‘others have it worse’ which was sometimes used to explain why they felt like a bit of a grey area medically.
Socially, many people had, at some stage in their lives, felt that visible difference prevented them from fitting in; some felt overlooked, harassed or targeted in the workplace. A feeling of their condition being misunderstood or underestimated by colleagues was also commonly cited. However, there were also very many positive stories of inclusion at work; people with good friends and supportive colleagues, many of whom enjoy their job. There was not a pervasive sense of social exclusion but a much more nuanced, and often positive, picture presented.
Theme 5: Me, visible difference and rights – moral duties to be wary of
In generic terms, rights were seen almost as a moral duty: something that should be enforced if needed, to stand up for myself or to prevent the same thing from happening to others. However, people were wary about the reality of enforcing rights – both in terms of bringing an employment claim to challenge discrimination, or having reasonable adjustments made (if appropriate). There was also a strong sense in some interviews that rights are only positive if handled in a certain way – there is the potential for them to become ‘wrongs’ if dealt with inappropriately by others. The idea of rights having the potential to make things worse fits within the pattern of general wariness.
What happens now with the research?
The interviews are a very important part of my wider research project. Combined with my legal research, I have concluded that the law as it stands is not providing effective equality rights for people with a visible difference. There are quite a number of factors which I believe are contributing to this, including:
- The scope of the ‘severe disfigurement’ provision seems too narrow – both the severity threshold and the concept of ‘disfigurement’ are unclear and restrictive, meaning that some people who are disadvantaged due to visible difference are likely not to be covered;
- The way that the law deals with ‘complex’ conditions (those which include both visible difference and some functional effects) needs to be more flexible; There is confusion and a lack of adequate guidance on whether and how reasonable adjustments might be applied for people with a visible difference;
- Awareness of the legal provision appears low and, even once people are aware, many do not self-identify as disabled, making enforcement of rights less likely and creating uncertainty over whether visible difference should be disclosed to potential employers;
- Different experiences in law and in the medical world can cause confusion or frustration for some people with a visible difference.