Tourette’s on the Pyramid Stage

As Frances Ryan for the Guardian writes, the crowd’s support for Lewis Capaldi during a performance affected by tics was “the sort of display of communal spirit that didn’t just feel like Glastonbury at its best, but humankind generally”.

Her article celebrates the response of festival-goers, who cheered on the singer and sang when he could not, as his vocal performance was increasingly impacted by Tourette’s (which includes involuntary movements and tics affecting his breathing).

However, Ryan’s article also highlights the rarity of visible disability – particularly on stages as prestigious and global as Glastonbury. On this unusual occasion, a person experiencing communication barriers was publicly celebrated and supported – not out of pity, but through acceptance. The crowd acknowledged Capaldi’s difficulties and worked collaboratively and responsively with him, to triumphantly finish the set. This wasn’t about bleeding hearts or saviour complexes. This was about wanting Capaldi there, wanting to be part of a moment with him, and working towards a successful communication exchange in an act of mass collaboration.

Here are the voices of some people with Tourette’s in response to the performance:

The disparity between this one, magic moment and society’s typical responses to disability (including wrong-footed, well-meaning ones) is stark. In Capaldi’s statement following the festival, he said he was “annoyed” with himself, perhaps a reflection of the shame some people with Tourette’s and many others are made to feel, when they are unable to mask their differences – an often exhausting task, upon which their equal treatment can feel dependent.

Making communication work

Capaldi’s performance highlighted that communication is a two-way (or in this case a 100,001 way) exchange, which both sides of the ‘conversation’ have a duty to make work. In many ways, the Glastonbury set illustrates best practice when working with a court user (or communicating with anyone, in any context) who has a communication difference or difficulty.

Communication is an exchange, which all participants have a duty to facilitate as effectively as possible. Part of successful exchanges involves understanding each participants’ communication strengths and needs and implementing adaptations to overcome any barriers. This doesn’t mean frustratedly ending an exchange because it isn’t working, or assuming that what somebody is trying to communicate isn’t of value.

Successful communication can look different for everyone, but collaborative, person-centred approaches are often the key. This is how the crowd approached their exchange with Capaldi. Listening to what he had to say about the difficulties he was experiencing, responding to his cues and providing the support required to facilitate a successful interaction.

Tourette’s & communication in legal proceedings

In a recent Communicourt blog for Tourette’s Action Week, we explored the condition (which affects an estimated 1% of people in the UK) and shared tips and strategies for legal professionals working with a client who has Tourette’s.

Many of these strategies focused on raising communication partners’ awareness and understanding (for example, addressing a jury to explain a defendant’s Tourette’s presentation and that this must not influence their verdict) and working collaboratively with the court user to implement effective communication strategies (for example, by asking what helps them).

Concepts like “understanding” and “awareness” may sound fluffy, but they can and should have concrete outcomes. For example, understanding that some people prefer to suppress tics (which can result in fatigue and impair attention) means that courts can take measures like implementing more frequent breaks, providing written summaries (in case evidence is missed through loss of attention) or working to ensure the individual feels more comfortable to tic freely during proceedings.

Meanwhile, being aware that anxiety and stress can exacerbate Tourette’s symptoms can prompt the court to explore special measures to help manage these feelings, like permitting remote attendance or the use of a screen during the court user’s evidence, which can assist the individual to give their best, clearest and most reliable evidence.

However, when we start to consider a list of possible ‘strategies’, it’s easy to lose sight of the person at the centre of these measures. Adaptations must be made on a person-by-person basis, and informed by the individual they are intended to assist.

A group of people reading a book called "Tourette's 101". Away from them, a women is raising her hand to get their attention and saying, "But I need..."

For example, while some people may prefer for their tics to be ignored in conversation, others will feel more comfortable with an alternative approach. While some people will feel less anxious engaging in proceedings remotely, for others, video calls can be particularly anxiety inducing. Instead of following a ‘tick-list’ when communicating with a person who has a communication difference or difficulty, actively seeking and integrating individual communication preferences is essential.

These principles don’t just apply when communicating with a person who has Tourette’s Syndrome, or when cheering on your favourite musician on the Pyramid Stage. They should be at the heart of every interaction. When we take a flexible, responsive, informed and person-centred approach to communication, we help ensure everyone can be part of the conversation.

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