For musicians there is no good excuse to be late. Studio time is expensive, rehearsal time precious, punctuality is ingrained in our training. It is horrifying to find that your train has been delayed or your childminder diverted by a family crisis. So imagine having to explain that you were not at your orchestral desk on time because you have just had to sit quietly in the corner eating a banana.
Invisible Illness or impairment is a broad way of categorising a multitude of physical and mental health conditions that do not exhibit external signs or symptoms to an outside observer.
I can’t speak for all that the term can encompass, but I do know from living with Type 1 Diabetes that being seemingly healthy, with no visible physical impairments, whilst living with a medical concern that is unpredictable, sometimes debilitating and on occasion positively frightening, presents substantial challenges in my working life as a freelance Cellist.
Serious health consequences add to the multiple pressures on freelancers
Freelancers are adept at navigating new environments, connecting with new people and reading the differing organisational pressures and expectations that they must adjust to on a weekly basis. But my experience of living with the back and forth of Type 1 diabetes on a daily basis makes this all the more challenging to manage.
Sometimes I feel that I am drawing in every rehearsal on the level of alertness, energy and positivity that most musicians reserve for the most exacting audition or performance. Many of the factors that affect fluctuations of blood sugar can be prepared for and managed but some are wildly unpredictable and impact on your control of the situation exponentially – variations of stress, the soaring temperature on a hot day, running from the station with a heavy cello on your back.
With serious health consequences on your mind constantly, it is frustrating and overwhelming to live with the daily reality that your ability to perform is dependent on continuously moving goalposts that no one else can see. You are in the game and quite rightly expected to keep up, but with a tyre puncture and a hole in your petrol tank.
Wanting to stay invisible can cause dangerous predicaments
In the orchestral freelancing world, where your livelihood depends on your flexibility to take work when it is offered, on your reliability when you do and on maintaining the professional standards of the orchestra you temporarily belong to when you are there, it feels risky to have to absent yourself, or ask for a special allowance to be made when you don’t appear to have an impairment or condition.
You want to draw attention to yourself for your musical contribution, not for the loudly emitting alarm noises when your insulin pump malfunctions in a moment of pianissimo. Gazes of confusion, concern or annoyance signal that you have something to feel shame about and you fear that you might not be invited back however dependable your playing or cheery your personality.
It is all too easy to fall into a mentality that your condition must be managed so well and so discreetly that no one has to know it is there.You aim for it to be unseen.
This is a dangerous predicament for the people in our profession who have invisibly managed conditions. In order to appear professional and undemanding, to draw no unwanted attention, they may convince themselves that it is worth jeopardizing their health, taking risks with it.
Why not suspend your insulin pump for the duration of the session so that it definitely won’t make a noise. Why not run your blood glucose a bit high for the duration of the concert, so that you don’t have to explain a tube of smarties on the stand, or wonder if you weren’t asked back because you drank a carton of orange juice during the second movement? Deal with the consequences later, you say to yourself.
How do we ensure judgement is not unknowing discrimination
Since becoming a member of the MU Equalities Committee, I have been driven to think about all the other invisible illnesses, conditions and impairments that musicians are dealing with. Somebody with IBS, for example, who has privately requested more frequent bathroom breaks but is then seen by an unknowing colleague as taking advantage or as being unprofessional.
Somebody with Autism, who has privately requested a separate dressing room to combat social anxiety within shared changing spaces but is then seen by a colleague as entitled or unwilling to integrate.
No one would wish a person dealing with such conditions to feel shame, but when needs are invisible, and solutions for them private, the seemingly privileged arrangements that are made can present to the unknowing world as bizarre, unnecessary, or even as an advantage.
There is that borderline between the everyday judgements we form of one another as capable professionals and the discrimination that denies the need to be treated differently as a measure that gives us equal footing. If there isn’t a visual indicator for an impairment then how do we ensure that our judgement does not become an unknowing discrimination?
A visually impaired person once told me that they didn’t carry a white stick because they needed it, they carried it as a signal to others that they are blind. Is it incumbent on anyone who has an impairment to say or show us what it is, if sometimes they just don’t want to or can’t?
The only way is to be acceptant
Often there are formalities in place to allow those with invisible illness to register with someone in management that reasonable adjustments may have to be made. But freelancers don’t always get that kind of attention and, even if they did, it won’t usually be someone in management who is raising an eyebrow when they check their blood sugar in a rehearsal – but the whole section, who have assumed they are reading a WhatsApp message from their girlfriend.
I don’t want to give the wrong impression. My experience as an orchestral freelancer has been for the most part one of understanding and care in relation to managing my hidden condition and I am grateful for that. But I am also grateful for this opportunity to highlight, in the spirit of awareness, that the internal struggles somebody such as myself may be dealing with should be known about and supported.
Since any one of us could be handling a condition beyond the comprehension or understanding of our colleagues, the only way to be is acceptant. Liberation comes from repeated experiences of non-judgement and non-assumption in environments with no shame and no need for explanation. Otherwise we might as well all carry white sticks.
For me it comes back to the session I was late for, eating a banana in the corner, and the relief I felt when the Orchestral Manager who knew me approached and said, “Don’t worry, take your time.”
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This article was commissioned as a part of UK Disability History Month, which runs from 18 November – 20 December.