The following is an extract from a practitioner article by practitioner Stephanie Bews-Pugh in which she reflects on her personal experiences of having a hidden disability.
Introduction
In this practitioner article, I reflect on my experience of having a hidden disability and how this informs my practice as an Assistant Psychologist (AP). Throughout I will use some illustrative examples, both from my personal life and from a clinical case study. The case study I describe is of a young woman named Emily who received a diagnosis of Autism in adulthood. Like many women on the Autism spectrum, Emily’s difficulties were often not noticed by others. Nonetheless, she experienced some very real challenges from living in a world not set up for her needs, and often felt misunderstood by people around her. In this article, I explore some of the similarities between this experience of late diagnosis and my experience of hidden disability.
To gain a fuller understanding of my personal identity and of how this relates to my professional identity, I employed John Burnham's (2012) personal and social ‘GRRRAAACCEEESSS’ to write a reflexivity statement. The letters in this mnemonic stand for Gender, Race, Religion, Age, Ability, Appearance, Class, Ethnicity, Education, Sexuality, and Sexual orientation. Burnham and Nolte (2020) write that this serves to remind us of the multiple experiences that contribute to identity; the final S also stands for ‘Something else,’ to give space to other aspects not explicitly stated. My personal and social GRACES include identifying as a woman and as an ‘aspiring Clinical Psychologist.’
Burnham and Nolte (2020) point out that aspects of identity are often viewed by ourselves and by others as being either a resource or a restraint, in both our personal and professional lives. I am aware that some of my GRACES do confer power and privilege in society, and therefore could place me in a position of advantage over others; for example, being white and educated. However, this is not the whole picture. Burnham (2012) notes that GRACES may be seen or unseen, voiced or unvoiced. In my professional life, aspects of my identify that are less visible include that I have encountered many barriers to my chosen career path. To qualify as a Clinical Psychologist is a competitive process, requiring high levels of achievement in work, education and research before there is even a remote chance of gaining a place on a doctoral training programme. I completed my Undergraduate degree when my children were at nursery and primary school. Due to parental and financial commitments, it took many more years to return to university again to gain a Masters degree.
Another less visible aspect is that I have a disability. I have a congenital eye condition and am partially sighted. However, as I have developed many compensatory coping strategies, my difficulties often go unnoticed by others. As such, this is a ‘hidden’ disability. While some of my less visible GRACES could be construed as ‘restraints,’ I personally view them as resources that can be drawn on to enrich my practice.
My Personal Experiences
Just prior to the 1981 Education Act, my parents succeeded in their fight to get me into the local mainstream primary school. Unaware of my parents’ efforts or of the wider political context, I quickly learned to hide any difficulties so that I could ‘fit in’ and be ‘normal.’ In those days, teachers wrote on a board at the front of the classroom, from which I was unable to decipher letters and numbers. When I was around 6 years old, I was given a large desk with an easel-like contraption to bring paper nearer to my eyes, a lamp, a monocular, and some support from a teaching assistant. My new desk was placed at the front of the classroom in the hope this would enable me to read from the board. None of this helped with what I wanted, which was to be like the other children. Unsurprisingly, I learned to read relatively late, eventually teaching myself over the summer holidays when I was 10 years old. To this day I am an avid reader of stories, and am also fiercely independent.
As an adult I have gained skills and experience to voice my needs, for example by asking for adaptations at work. The Equality Act (2010) requires employers to make reasonable adjustments that prevent employees with disabilities being disadvantaged in the workplace. It is good practice for employers to assess the needs of disabled employees, to propose adjustments based on this assessment, to check proposed adjustments with the employee, and to implement agreed adjustments in a timely fashion (Equality and Human Rights Commission, 2011). Despite this, my experience of disclosing disability and of employers’ responses has been mixed; ranging from waiting a long time to be assessed, to waiting an even longer time for adjustments, to provisions that do not account for my actual needs. One manager expected me to work from a laptop with a 15” screen despite having been informed of my visual impairment, and persisted in ignoring requests for reasonable adjustments which I made in person and via email. Eventually, after escalating my request to my manager’s manager, the company bought me the largest monitor imaginable. This must have cost them a great deal, but as they had still not taken the time to talk to me to find out about my vision or what would help, it was not fit for purpose. This caused me to wonder if the barriers I was coming up against were due to the hidden nature of my disability; is it because my partial sight is not immediately apparent that others failed to see it as ‘real,’ or to appreciate the multiple ways it affects me? Such experiences of not being heard are isolating and disempowering, and have an eroding effect on personal resilience.
Reflecting on my GRACES and experiences has made me realise that my disability was not always hidden. From talking to my parents, I know that as a young child I would get up close to things I wanted to see. By the time I was 8 or 9 years old, I can remember pretending to see more than I could. Bringing my psychological knowledge to this, it seems that from early childhood I learned to mask my difficulties, and that most of the time I continue to mask completely unconsciously. Having a ‘hidden disability’ then is in part my own making, in as much as learning to mask was a response to an environment that did not support my needs (despite the best efforts of teachers and my family). That my disability is not immediately apparent to others has its advantages. Perhaps I avoid some more overt forms of prejudice and discrimination. On the other hand, the hidden nature of my disability makes it more difficult to have my needs met. While the GRACES framework has given me another tool to make this visible and to voice my needs, letting go of my ‘coping’ mask and asking for help involves exposing my most vulnerable aspects - a risk that has not always paid off.
Fortunately, I have also had some positive experiences of support in the workplace. For me, it has made a crucial difference when the person assessing my needs has listened and attempted to gain an understanding of my needs. It is helpful when I am given the opportunity to check the assessment and recommendations, and to give feedback. When these things are in place, they tend to lead to the provision of appropriate adjustments that are helpful.
How My Personal Experiences Have Impacted My Work
Each person’s experience of disability is individual: context, upbringing, nature of condition, age of onset, culture, time and place will all have an influence. However, I do believe that my personal experience of disability in an able world does give me an insight into some broader effects of living with disability, including social and psychological impacts. For example, many of the problems I have encountered have not been about my disability per se, but about systems that are not tailored to my level of ability, or to other people’s lack of understanding. Street signs, bus numbers, and boards at train stations are all tantalisingly just out of visual reach: I can see that they are there, but cannot see enough to get the information I need. This experience of being forced to navigate barriers and challenges erected by society is shared by many people with disabilities. For people with a hidden disability, these barriers are just as ‘real,’ but our struggle is often unseen. Whether hidden or visible, people with disabilities experience being ‘different.’
My experience of hidden disability has been particularly pertinent to my recent work with women with Autism Spectrum Condition (ASC). Historically, more boys than girls have been diagnosed with Autism, and it was widely believed that such conditions disproportionally effected males. However, recent research suggests a different reason for this: women and girls with Autism often remain undiagnosed due to a more ‘social’ presentation and a learned ability to ‘mask’ their difficulties (Elcheson et al., 2018; Stewart, 2012). Despite (or because of) such learned social skills, Autistic women describe feeling misunderstood by others and being forced to navigate a world that is not designed for them (Dugdale et al., 2021; Scottish Autism, 2021). Whether due to late diagnosis, or to the invisible nature of their difficulties, the needs of Autistic women and girls are often not recognised. This means that their needs often remain unmet in education, employment, social services, and healthcare.
Drawing on my own experiences of support - not only in work, but in education and healthcare settings - I try to support people in ways that I personally have found helpful. This involves being person centred, listening, recognising strengths, and providing interventions in-line with needs and goals.
A Practical Exploration of How This Influences My Practice: A Case Study Emily is a young woman who was referred to Studio 3 for help with her mental health. Previously, she had undergone multiple mental health assessments and received various treatments and interventions.
Some of the core skills of Clinical Psychologists are assessment, formulation, intervention, and evaluation. This means working with individuals to assess their needs and strengths, hypothesising or suggesting possible causes for psychological distress, and offering appropriate help to reduce distress and increase wellbeing (British Psychological Society, 2013; Department of Clinical Psychology, 2001). To achieve this, we must pay attention to the personal accounts of the individuals we aim to support (Coles, 2010). In other words, we must listen first. In the remainder of this article, I will focus on how my personal experience of disability influences the way I endeavour to use core psychological skills when supporting clients. To illustrate, I present a clinical case study. This case study does not represent any one person, but is an amalgamation of several individuals I have worked with. All personal characteristics have been changed to protect their identities. Continue reading...
Written by Stephanie Bews-Pugh
Assistant Psychologist