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Special Edition: Starting the conversation for the Disability, Diversity & Inclusion Event

Thu 4 May 2023 - Nicola Demosthenous
Nicola Demosthenous qualified as a Music Therapist from GSMD in 2021. She has worked in a variety of settings including the NHS and Education Sector. Nicola's passion is Music Therapy for mental illness, from a trauma-informed, psychoanalytic, and spiritual perspective. She currently works for North London Music Therapy, producing content for their social media platforms which involves advocating for Music Therapy and its wider themes. She hopes to be back in clinical work soon. In this Special Edition blog, Nicola shares her personal journey and experiences to start a wider conversation in advance of BAMT's Disability, Diversity and Inclusion event, to highlight the realities of the accessibility challenges faced within the profession by those with disabilities.
Tags: Covid 19 // Music Therapy

"Even so, when the whole earth is sheeted and slippery, some undulation, some irregularity of surface will mark the boundary of an ancient garden, and there, thrusting its head up undaunted in the starlight, the rose will flower, the crocus will burn. But with the hook of life still in us we must wriggle. We cannot stiffen peaceably into glassy mounds. Even the recumbent spring up  at the mere imagination of frost about the toes and stretch out to avail themselves if the universal hope - Heaven, Immortality" - Virgina Woolf, On Being Ill

 

I haven't known disability forever. In commencing my music therapy training in 2019, I was a healthy and athletic young person. I imagined that my training might open a can of worms within my psychological state, and it sure did. But what I didn't expect was that a few months before finishing my degree, I would be faced with an unimaginable illness which would rip my health from under my feet, left to stumble over hurdles too high, left to survive. This blog explore issues and barriers that music therapists with an illness or disability might face and aims to challenge our position of equity and level of inclusivity within the profession. To preface, I want to disclaim that the perspective I share comes from my own experience. The illness I've faced gave me long-term but temporary disability and although I shouldn't feel ashamed about that, I do. Here, I aim to express my own unconscious and internalised ableism and shame, struggles and message of hope. I keep personal details of my illness private to protect potential prejudice, perhaps a symbol of irony for the themes explored in this blog.

Reaching forward, holding back
Before my illness and subsequent disability, I had high hopes, dreams, and ambitions for my career. I would gain experience in many different fields, then perhaps take on a leadership position. Maybe I would go into private practice, eventually building an organisation that reflected my values as a music therapist. Perhaps I would even become a supervisor, inspiring the next generation of therapists with my warm and open character. Or i would take on a position as a researcher, develop pioneering models for working as a music therapist. nothing would hold me back, least not my passion and motivation for this profession. You may want to call me naive, that eventually I might be awoken to reality. But all the above at least felt possible for me as a health and able-bodied person. Now, on a bad day, my biggest achievement is taking a shower whilst regulating the re-traumatisation that explodes in my body and mind. Crushing fatigue won't cut the slack in a leadership position. But blazing pain in my body will stop me carrying out the very physical task of a singular music therapy session, let alone surviving the NHS' standard six plus sessions in a day. I want to believe that there is a world in which people like me can reach those dreams, but right now I just can't. Thankfully, my illness has improved over time and continues in an upward trajectory, albeit simultaneously un-linear.
Barriers

During my training and subsequent employment (in NHS, education, and private sector), I found myself in a survival state of functioning during music therapy work, and in a state of shutdown outside of this work. As mentioned above, some parts of this were during moments I experienced pro-longed health improvement, and others were during a time of steep decline. Again, not necessarily for any reason that I, nor my doctors could pin-point. I event find myself trying to justify to you, the reader, as to why I attempted to continue my work when I was so ill. It is still a question I ponder on, almost one year after deciding to take a break on clinical work.

Physical barriers

After a while, travelling on the tube was not an option for me due to the sensory over-stimulation and physical demands of extended walking needed to reach my destination. As a profession, we are extremely flexible and thoughtful about recognising how our clients physically get to the therapy room. What barriers might they face and how can we make it happen? But when it comes to therapists with additional needs, why do we think so rigidly? You are either well or not, I was told by a colleague who was probably trying to protect me but left me deeply hurt. I was sharply reminded of this when a headteacher ushered me out of a lift to allow the student in a wheelchair in before me, prompting me to take the two-flights of stairs instead (even though she know of my limitations). In NHS job descriptions under 'essential requirement' is the responsibility to carry instruments around to various locations. In most job adverts, a job-share is not explicitly stated for those who might not be able to commit to full-time work. I have personally enquired about this recently and was met with an uncomfortable response. We cannot claim to be disability confident if we make these kinds of assumptions about possible employees. What if we were to ask the questions; how can we support you to get to work safely; do you know what your physical limitations might be for carrying instruments; if not, how can we support you to figure this out?

Thankfully, I also experienced and still experience some very positive relationships within my employment experience. This was made possible due to the level of empathy and open-mindedness of my managers which made for a secure and safe relationship. These relationships enabled me, over time, to communicate my needs openly and discuss my needs and requirements. I'm so truly grateful to these individuals for facing their own unconscious bias to enable inclusivity into the profession. The problem with this is that I shouldn't really feel grateful for getting what I need. It's a basic human right to be offered the same level of opportunities as the next person. Sadly, this is far-reaching reality for many.

Invisibility | Changeability | Flexibility

Invisibility 

Since my condition is invisible, this puts me at much higher risk of assumption and misjudgement. Further, because you may not be able to see what's wrong, my need to over explain and justify my needs are amplified. Comments such as 'Oh but you look so well'; 'I wouldn't know if you didn't tell me', puts strain on my psychological well-being and increases levels of exhaustion, perpetuating the feelings of isolation and a lack of belonging within the profession.

Changeability

The beast of my specific condition lies in its extraordinary changeability in presenting symptoms from one day, week or month to the next. If you think this is confusing, trust me in that it's even more disturbing for the person experiencing it. This can make it difficult to have workplace adjustments understood by employers, colleagues and event clients. What do you mean you can't do that? But you could do it last week?

Flexibility

Being a therapist in its most reduced form means providing a secure and regular space for those with whom you're working, the opposite of flexible. I can't be there for my client one week and not the next. These are the non-negotiables that I have accepted my condition meets friction with. Thanks to support of employers and supervisors around me, I feel secure in knowing that for me, being a therapist to one client a week is better than being an irregular therapist to twenty. But one client a week is not going to pay the bills. There remains much rigidity in the opportunities outside of clinical work. Music therapists with disabilities have so much value to bring service development, writing, research, lecturing, advocacy and more. This is rarely obvious to the employer hiring as well as to the disabled music therapist looking for work: we must start to think outside the box to generate sustainable and honest change.

Some concluding thoughts

For a long while I felt pushed out of the profession, due to my own internalised ableism and the lack of representation, awareness, and flexibility within the profession itself. I didn't belong here with my symptoms, needs and struggles, and the only way of returning to music therapy would be in complete and perfect health (whatever that means). But I'm learning that I matter, my voice matters. The struggles I've faced can be a powerful vehicle for change. A chance to open our eyes to the lack of equitable opportunities for anyone who lives with or is recovering from a mental or physical condition. I am passionate about this work. Specifically, I'm interested in music therapy for mental health and illness. I feel excited about the position our profession is in, a few meaningful and honest conversations away from real change. I know that I'm a good therapist, and i know I have potential to expand and progress and make the most of what this wonderful profession has to offer. But we must start listening, because isn't that what we do best? Let's listen to al the voices. The ones squished in pigeonholes, the ones who've been made to feel they don't matter and everything in between. 

So, make space at the table, I would be delighted to join you with a cup of tea, an open heart, and a mind full of ideas.