Abstract
This article explores how having two non-visible disabilities, Optic Disc Coloboma and Addison’s Disease, has contributed to my development as a dramatherapist. I consider how disability led to me linking health and the arts, how my identity and therapeutic practice has developed alongside expectations, knowledge and consequences of disability. I reflect on how the translucence of my disabilities, where little is certain, developed my understanding of self and therapy. I then discuss how the specifics of my disability have led to an engagement with the effects of the hormone cortisol when considering the therapist-client relationship. Finally, I consider possible benefits of making non-visible disabilities more visible.
Translucent–adj–Transmitting light but causing sufficient diffusion to prevent perception of distinct image.
Preface
How do I begin when beginning means vulnerability? How much do I desire making you work for your knowledge to change the power balance, so you sense what it’s like to be me?
I want to look you in the eye and say,
Here I am, a disabled therapist, and that counts, and is valuable and has meaning.
I also don’t.
I have optic disc coloboma and Addison’s disease, both rare conditions, and my initial impulse was to begin with an explanation – something I have had to do with multiple professionals. But this article is more truthful if I acknowledge the courage and energy involved in constantly framing myself to others in terms of my conditions.
Instead, I ask you to meet me, read about these conditions for yourself and so share the knowledge burden I carry, which can feel heavier each time I describe what is ‘wrong’ with me.
I view this article through the lens of ‘translucence’ – a series of observations on my personal experience, alongside reflections on how this informs my therapeutic practice. It is not a manifesto. It doesn’t draw firm conclusions. Rather, ‘spotlights’ reveal scenes on stage, allowing you, the audience, to interpret in a way which makes sense to you. Because of this, I have chosen a non-linear structure with some of the format of a script, which enabled me to share my personal information and feel ‘held’.
I begin with an offering:
I wonder if my experience is relevant to anyone else, if it can help my clients?
and queries what you will make of my reflections – are they translucent images, or part of a jigsaw, allowing for a greater definition?
I work with children and adolescents between the ages of 5 and 14 years. Almost all are from different cultural backgrounds to mine, and most have experience of the care system. Frequent themes in the therapy space centre around identity – Who am I? Where do I fit in?
How can I be a partner in their exploration unless I fully engage with these questions on my own behalf?
Some of this was explored during training, but I have rarely interrogated my disabled self. So, this article pays tribute to the children I work with and attempts to create a more equitable therapeutic environment for them.
A note about translucence, memory and structure
My title links non-visible disability to the descriptor ‘translucence’. Translucence encapsulates personal issues around my disabilities and wider thoughts around therapist authenticity, therapist presence and my approach to this article.
Translucence speaks of the ‘unknown’ I experience as part of my conditions. There is a constant balancing act between fearing and wanting to understand, what is happening in my body, often exacerbated by feeling professionals involved in my care are not being honest with me, sometimes assuming my needs, sometimes seeming uncomfortable with their own perceived lack of knowledge.
An interaction with a professional floats into my consciousness:
I visit a new optician. I will need to tell the story of my ‘special’ eyes again. It feels tiring, as though my eyes are on display as objects of worship, whilst I am invisible. His machine probes. ‘Oh’ he says, ‘I’d expect you to have more blind spots than you do’. I am unnerved, unaware that I had any blind spots. I feel my sense of self wavering, held hostage by someone who seems to know me better than I know myself.
This recollection reaches out as I read a child’s referral and prompts thoughts around my own status as a professional.
I wonder how clients feel when they must repeatedly detail their experiences to multiple professionals? Where is their ‘self’ in this?
I wonder if my ‘blind spots’ were discussed when I was a child, but no-one thought to tell me when I got older?
I remind myself that knowledge can be grounding, in this case carving sense out of anxiety. I imagine myself and my client in our therapy space.
‘I wonder’, I say, ‘what it was like to experience that . . . is there anything that doesn’t make sense?’
And we write down questions that need answering. And we set up chairs and fabric and explore a memory.
And that prompts:
Do you remember being petrified of the donkey in Greece? asks my husband.
[I search memory, nothing found]
Throughout this article, I use memory as a reflective tool. But . . . I’m not sure how ‘true’ mine are. I have ‘memory blanks’, sections of my life where I can’t recall even a vague picture of my past. Addison’s disease can impair episodic recall (Henry and Thomas, 2014). I haven’t included memories where others have filled in my blanks. In these circumstances, I rely on those I trust to help me piece together my experience.
My mind sinks into the disorientation of memory blanks.
No matter how much I trust those who help fill them in, it creates anxiety.
My thoughts stray to a client repeating ‘I don’t know, I don’t remember’ in exhausted frustration.
Many clients will have experienced chronic stress – a known factor in impaired memory function, particularly in terms of episodic memory (Barch et al., 2019).
Perhaps helping memories become more concrete might allow their sense of self to begin rebuilding?
My client grabs at a vague remembrance of a place name.
I print out a picture and we pour over it, seeking sensory clues, creating a map.
For me, the translucence of my disabilities undermines my ‘map’.
I cast around for landmarks.
I find I am held by the art form.
Familiarity allows me to begin creating order from chaos, and my script emerges.
Prologue
I begin angry.
My relationship with disability and how it relates to my work with clients is complex, messy, and feels overwhelming. I have found myself resisting the constraints of academic convention, sometimes feeling explosive anger towards them. I do not experience it as a therapeutic holding of chaos, rather, a power imbalance where I must construct my feelings, my story to obey another’s rules, maintaining their sense of comfort at the expense of my own.
Rules and conventions ensure everyone knows where they are, they enable checks and balances, keeping us safe. They mean we are taken more seriously, that we are listened to. . . Why do I resist?
Because:
Academic conventions, for me, represent a wider sense of exclusion, where rather than elucidating meaning, they are part of a dominant practice constraining what I am allowed to say, how I am allowed to say it and who I am allowed to be (Lillis, 1997).
Convention also reminds me of the medical model of disability, a deficit perspective where I am viewed as being ‘less than’ someone who is able-bodied, as opposed to the social model, which views disabled people as being disabled by barriers in society rather than their condition (Scope website, n.d.).
As a therapist, my discomfort relates to an internal conversation around the power balance within the therapy space. Academic convention seems to speak of a hierarchical structure where I remain separated from my clients and risk crushing them within my own world view.
Yet I persist.
I remember when I was the client.
Aged fifteen. Several years away from my Addison’s diagnosis, but I’m almost certainly experiencing increasingly loud murmurs of it. I sit with my Art Therapist, clay in hand, producing numerous twisted heads, all with holes for eyes and holes for ears. I want you – reader – to hear, acknowledge, listen and not use any of it to create a narrative where I am lesser. I want to be visible.
But, if I want that, where does that leave my therapist self and my client’s need to be heard and have equity?
Perhaps explicit engagement with my own chaos and vulnerability, as explored and held by the structure and methodology of this article creates a more equitable space which considers us both?
Methodology
This article is influenced by autoethnography, a qualitative research method that begins with a personal story (Wall, 2008). The method can provide an alternative version to stereotypes and currently accepted narratives and assumes direct experience of institutional oppressions or cultural problems – such as illness – can offer a different perspective to one provided by someone with limited experience of these. This does not suggest that autoethnographic work is more truthful or accurate than research done by those without direct experience but that the autoethnographic researcher can use their insider knowledge to tell their story in a new way (Adams et al., 2017).
Exposed. Defenceless
Interrogating my experience feels unbearable. I procrastinate, building up files of other’s research, attempting to validate my own life. I vacillate between wanting to hide and being desperate to be heard. I feel vulnerable, and it feels easier to use any words provided they are not my own:
honest autoethnographic exploration generates. . . fears and self-doubts – and emotional pain. . .there’s the vulnerability of revealing yourself, not being able to take back what you’ve written or having any control over how readers interpret it. It’s hard not to feel your life is being critiqued as well as your work. It can be humiliating (Ellis, 1999: 672).
I find this is exacerbated by my privileged ‘translucent’ position. As someone whose disabilities are ‘non-visible’, I can pretend that I am not disabled. This allows me to benefit from allying myself to an able-bodied majority and escape disability-related discrimination.
Conversely, there may be consequences of publicly acknowledging that I am disabled. Will I be judged as being less capable or become part of a wider narrative in society where I am inspirational, triumphing over my disabilities? (Davison, 2022). Or seen as lazy, weak or a failure? (Crosse, 2021).
Inherent in this is my internalized ableism. To engage with my disabilities is to abdicate the power of abled world.
I fear the words others use to describe my clients being applied to me.
I fear the voices from my past:
What is wrong with me? How can I be more normal, more able to fit in?
‘Why are you so slow,
Rachel, why are you so fat, why are you too thin, don’t put all that salt on your food, it’s bad for you.’. .
What do those voices teach you? Pretend. Don’t talk about your pain, it worries people. Train yourself never to display a reaction to pain such extent that your identity shatters when a therapy tutor sees through the pretense:
‘You smile when you’re in pain’. Just keep smiling. Don’t show your fatigue, keep going, then collapse when no one can see.
I step back, seeing my past self. Distance allows me to make meaning from pain:
Before diagnosis with Addison’s, my identity was built around not meeting societal expectations: a negative identity where I was someone who did not behave in a way that was ‘good’ for me. Diagnosis revealed little of this identity was in my control. Weight, fatigue and salt cravings were responses to lacking hormones I needed to live. It created an identity crisis. Who was I? Did it matter if I was totally prey to elements I couldn’t control? It has taken strength to enable a new sense of self. I needed time to establish myself as my own entity before feeling able to engage with a group identity of ‘disabled people’.
This has been facilitated by finding a workplace where I have colleagues who are also disabled and where I can drop my defences. In this environment, I have not felt the need to ‘prove my worth’ and have experienced less guilt about letting everyone down when ill or shielding. This has resulted in a creative exploration of ways of working, including phone, written and online therapy, to suit the needs of myself and my clients.
In addition, ‘owning’ my disability has allowed me to move on from feeling that I must provide unerring consistency to clients to instead can effectively ‘hold’ them by acknowledging how they might experience health-related absence.
If I can’t come in. . . I’d phone and ask them to tell you. If you are worried you can ask them to pass on a message
This environment has helped mitigate my internalized ableism, meaning I am less likely to ‘other’ my clients by separating myself from what I perceive as any devalued identity, benefitting both of us (Jóhannsdóttir et al., 2022).
But
Away from this ‘safe space’,
I want to run from what I write.
Pain flares,
I want to say that I cannot do this.
I don’t.
It occurs to me how few clients seem to ‘run away’.
What am I asking my clients to endure?
If I feel this vulnerable as an adult who has had therapy and training, how might it feel physically and emotionally to be living their life?
What might that look like in the therapy space?
In this state my ability to be creative disappears. I cannot hold on to a story, I cannot settle or be still. I try and match my rhythm, tapping out my heartbeat, trying to move my whole body, finding music to match the movement. I breathe.
Another memory crystallizes. I begin to feel safe.
My yearly eye appointment at Great Ormond Street Hospital. Mum and I catch the slow train. Summer. London is all bright, dusty, noisy wonderfulness. I am given eyedrops and, when we emerge into the continuing day, the light is intense and painful. Suddenly the outside world is my enemy. I need to be somewhere dark and safe. I am not aware of giving thought to my mother’s needs, though they frame how our family lives our life. Extended standing or walking is painful for her, perhaps why she decides to buy the cheapest tickets at the only accessible theatre nearest the station home. I can see, she can rest, we are wrapped up together in darkness as a whole new world unpacks in front of me.
I distance myself from the awe of that moment. The phrase ‘equitable space’ crosses my mind.
This was a rare moment where my mother and I experienced a sense of equity and the beginnings of my engagement with the link between theatre and wellbeing. My ‘safe’ theatre spaces usually mirror this one.
A safe space is small, uncluttered and accessible to a range of impairments. Somewhere okay to be by yourself in the audience, as well as being part of the communal witnessing experience. When I find this, I am far more likely to ‘take a risk’ on a play.
This is also the model I gravitate towards as an ‘ideal’ therapy space.
I seek space where there is more equity of status between me and my client. Often this is the option for an ‘empty’ space, ready for us to create something together.
I pay attention to the power of lighting. Before the diagnosis of Addison’s, I would have a stress-related response to strip-lighting. Anecdotally, I have found that this is not an isolated experience. In sessions, this can necessitate balancing a need for privacy with allowing in natural light, but mostly I attempt to replicate a theatre lighting state, where there is a darker ‘audience’ area and a brighter ‘stage’.
I notice that there is often an intensity to the work in the ‘stage’ area.
The different lighting states allow clients to choose how much of each they can manage. In this theatre setup, there are also opportunities for an ‘orchestra’ area, a backstage and for our roles in the room to interchange between actors, spect-actors (Boal, 1985), musicians, stage managers and craftspeople.
I fear my idea of ‘equity’ is fragile. ‘Look’ it seems to say, ‘at all this knowledge I have, how I fill up this “empty space” with
My ‘safe’ space also links to the impact of cortisol in my life. Maybe this is the meeting point between myself and my clients.
Cortisol
Cortisol is an essential neuroendocrine hormone, a ‘stress’ hormone released in response to acute, chronic or traumatic stress. It affects nearly every organ in the body, regulating metabolism, blood pressure, blood sugar, helping control the sleep-wake cycle and suppressing inflammation. Cortisol levels normally peak in the early morning and reach its lowest level around midnight (Cleveland Clinic, n.d.)
When working effectively, cortisol is part of a stress hormone system which responds quickly to threat, before returning us to a state of equilibrium (Van der Kolk, 2014). However, this system can frequently be knocked off balance – there is some evidence that some people who have experienced physical and sexual abuse may subsequently display low cortisol levels (Meewisse et al., 2007) while childhood poverty can lead to children experiencing high cortisol levels (Fernald and Gunnar, 2009). Both can significantly impact the overall health: Low cortisol might lead to increased likelihood of developing an autoimmune condition or difficulties with learning or relationships with peers, while high cortisol can lead to increased susceptibility to illness and infections (Bruce et al., 2009).
Cortisol looms large in my therapy space, partly because Addison’s disease means I don’t produce the hormone naturally and must try and replicate its ebb and flow with steroids.
I work best with time to prepare before a session, enabling me to dampen the impact of my condition so that it doesn’t dominate the therapy space. I mentally go through a process of stopping my awareness of my pain to allow space for that of my client.
Is this useful?
I become aware of how necessary it is for me to shut off from pain in order to live.
When should I lay the groundwork for a client to access their pain?
When should I encourage ways to avoid it?
I remember times when a child has disclosed. First, hyper-focus, simultaneously trying to hold a sense of calm understanding while running through protocols. Later, the impact, as I experience intense fatigue, severe muscle pains, nausea, shakiness and, sometimes, a sense of dissociation.
This is part of my disability, but perhaps also transference. Maybe my experience represents what it has taken for my client to disclose? I try and balance medicating myself so that I am safe to work without blocking therapeutic communication.
Maybe my experience can give voice to clients who experience low cortisol.
I imagine what is expected of a client on a typical day: waking, eating, focus, questions, creativity, remembering timetables, peer and adult interactions, multiple room and subject changes, homework, each involving numerous processes, most of which, as children, are imposed on them.
Memory intrudes. A time when I seemed cut off from the vibrant lives of my peers:
What did absence of cortisol feel like to me?
Tiredness so overwhelming it felt like battling a raging tempest. Pain so all-consuming that all I desired was any possible way of ending it. Vomiting several times a day. A gradual shutting down of perception, increasing memory blanks, an inability to cope with anything relational as every resource tried to keep my heart beating, to somehow still exist.
I am aware my memory is extreme, but surmising that clients with low cortisol might experience a milder version, how might the requirements of a ‘usual’ day be for them? Do they wake still tired? Do they take longer to get ready? How do their caregivers respond? Can they fully participate in school? Do they feel they are always trying to ‘catch up?’ Do they experience pain? Do they have opportunity for rest?
When my cortisol dips, I find existing in the world becomes a struggle.
I imagine for someone with low cortisol, living might require a super-human effort.
What does that mean in the therapy space?
Perhaps therapy is the only opportunity for rest?
Perhaps what is therapeutic is permission for nothing to happen?
How vulnerable might this feel?
Acknowledging they have reached a place of stasis.
If they just ‘stop’ will everything collapse like a tower of cards?
Here, my understanding of the impact of cortisol has direct influence on what I offer clients as dramatherapy interventions.
In low, but not dangerous, cortisol states, I struggle with many ‘age-appropriate’ expectations – anything involving intense thought, organization or responsibility. I often rebel against this, as the voices of the past crowd around me, telling me I am ‘lazy’. Relief comes when I am given permission to abdicate my adult persona. In this state, I return to needs that might be expected from a young child – the embodiment stage of Sue Jennings’ Embodiment-Projection-Role paradigm (Jennings, n.d.). I want a trusted person to show care and guard my sense of self. This care might be shown by facilitating a comfortable place to lie down, offering a soft blanket and being alert to times I might need food.
If I suspect that a client is experiencing a low cortisol state, my first impulse is to allow ‘permission’ for their experience into the space. Next suggestions can depend on the level of trust that has developed within the therapeutic relationship, particularly as many clients have negative experiences of caregivers.
Interventions often include encouraging grounding, offering a range of sensory objects and fabric which can be held or used as blankets, playing music which a client finds comforting and sometimes softly narrating reassuring phrases – much like a caregiver might do with a tired infant.
As a session ends, I am aware that a client will need to re-engage with their ‘age-appropriate’ persona, as far as possible, in order to be safe within the outside world. To this end, I consider having a resource available to act as a Winnicott-style ‘transitional object’ (Winnicott, 1991). With a young child, this might be a soft toy, whereas with adolescent clients, I might use a ball or stress toy.
I acknowledge the strength needed for this vulnerability.
Yet, I protect my own vulnerability – the influence of my disabilities on practice remains translucent. Observers would be unlikely to see links between external therapeutic decisions and internal processes leading to them.
This is because I remain ambivalent about disclosure of personal details.
However, my experience indicates the value of boundaried self-disclosure as a therapeutic tool, enabling the therapeutic relationship. It also assists my clients to develop their sense of self and capacity for bonding and attunement as part of an interpersonal connection (Hardy, 2018). This can be an important part of therapeutic ‘repair’ work with traumatized children (Cook et al., 2005).
Any decision to disclose centres around creating an environment where a child might feel less alone and able to locate their experiences in relation to the experiences of others, so I try and identify elements of universal experience:
When I was your age, some school rules really annoyed me . . . I wonder if that’s how you feel now?
But, as my disabilities are non-visible, they don’t naturally become part of sessions, and I am reticent about disclosing them.
Furthermore, self-disclosure depends on a series of questions I ask myself:
Is there a benefit for the client, achievable only through disclosure. What is this?
What are the benefits of not disclosing?
How will disclosing impact the power/status relationship?
Can a universal experience be identified?
Do I know enough to judge the impact of my disclosure?
Can I hold any negative impact of my disclosure?
So far, I have not answered these questions sufficiently to prompt self-disclosure.
But what might the value be?
A recent memory floats to the surface.
A medical appointment. The Nurse uses a wheelchair. For the first time, I voice my fears, feeling I might be understood, that she too might have experienced similar feelings, similar reactions from medical professionals. Her ‘otherness’ has helped me contextualize mine. I feel seen.
I imagine myself with a client. Perhaps I see myself as a part of a mass of adults, separated from them by status and privilege.
‘Sometimes my body feels jumpy if I’m anxious’. ‘You feel jumpy too?’ I nod. They nod.
A start?
Epilogue
I knew that I wanted to be part of the discourse about therapy and disability but assumed my approach would be a traditional ‘academic’ one.
I was not able to do this – perhaps symbolic of viewing my disabled self as ‘other’ and outside what is considered traditional, appropriate or usual.
I am conscious that some of what I discuss teeters between being understood as relating my personal experiences and these being supported by medical literature – perhaps the motivation behind my colloquial style.
I have held in my mind considerations of what I want you to experience and if, by constructing my article in such a way, I might undermine its purpose, may be exclude too many from being able to understand my perspective.
Ultimately, these thoughts hark back to a line I suspect many ‘outsiders’ feel they tread – how much can I be ‘me’ versus how much must I conform to the expectations of the ‘insiders’ in order to be invited to participate?
What has ended up on the page is a sense of the messiness and pain of the development of a disabled dramatherapist, alongside reflections about what this might mean for client work. I invite you to consider.
What do you feel?
What would you do?
How could what I have written inform practice?
Are there alternatives to the ‘usual’ way we do things?
Does anything seem clearer?
What remains translucent?
And I exit, pursued by a bear (Shakespeare, 2007: 158).
Footnotes
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Author biography
Since qualifying at Roehampton,