Tag: Tourette's

A line drawing of the Glastonbury Pyramid stage surrounded by confetti with bright letters spelling out Tourette's on the Pyramid Stage

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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Tourette's Action social media image for Tourette's Awareness Month. It shows a head in profile with the brain filled with different coloured areas. Each area includes a feature of Tourette's Syndrome, including sensory needs, anxiety, insomnia and OCD.

Tourette’s at court: 5 tips to support your client’s participation

Tourette’s affects 1% of the UK’s population, which doesn’t sound like a lot, until you realise that means there are approximately 690,000 people living with Tourette’s. That number only includes people who have been specifically diagnosed with Tourette’s and does not consider those who are undiagnosed or have other disorders with a similar presentation, for example Tic Disorder, autism and attention deficit hyperactivity disorder (ADHD).

In this blog, we’ll be sharing some more information about Tourette’s, tics and how legal professionals can help support the equal participation of a client who has Tourette’s or tics in the courtroom and conference room.

Tourette's Action social media image for Tourette's Awareness Month. It shows a head in profile with the brain filled with different coloured areas. Each area includes a feature of Tourette's Syndrome, including sensory needs, anxiety, insomnia and OCD.

Tourette’s Awareness Month

15th May – 15th June are Tourette’s Awareness Month. This year, Tourette’s Action have chosen the theme #ItsWhatMakesMeTic to destigmatise the condition and to familiarise people with a range of tic presentations. The Tourette’s Action TikTok is full of videos from the organisation’s five ambassadors, who have been sharing their experiences, tics and coping strategies in real time, making the channel a fantastic educational resource for anyone who wants to learn more about Tourette’s.

What is Tourette’s syndrome and how might it affect a client during legal proceedings?

Tourette’s syndrome is a neurological condition that causes you to make involuntary movements and sounds called tics. Tics are fast, repetitive muscle movements that cause sudden body jerks or sounds.

Tics can often be made worse when the individual is going through a period of stress and anxiety, which is highly likely when going through court proceedings.

Below are some common examples of motor and vocial tics:

Motor ticsVocal tics
Head jerkingRepeating words or phrases
Shrugging shouldersClearing throat
HittingSinging
Blinking excessivelyHumming
Clicking fingersGrunting

A common misconception is that everyone with Tourette’s shouts out obscenities! Coprolalia is the medical term described as: “The involuntary outburst of obscene words or socially inappropriate and derogatory remarks”. This is actually rather rare and only affects 1 in every 10 people with Tourette syndrome.

Since the COVID 19 pandemic, there has been a significant increase in the number of people (predominantly teenage girls) displaying ‘Tourette’ type behaviour and so the number of people presenting with similar symptoms is at a record high. With Tourette’s becoming increasingly prevalent, it is important for professionals in the legal system to know how to communicate with someone who has Tourette’s, and equally, how to assist those affected to communicate effectively with others.

Tips to assist a client with Tourette’s in legal proceedings

Below are some top tips for assisting a client who presents with Tourette’s or Tourette type behaviour during a legal conference or in a court environment:

  1. Have an open conversation with your client about their Tourette’s

    Don’t shy away from it or ignore it.  Ask your client if they feel comfortable giving you information about their diagnosis (be mindful that they might not!). This can be an opportunity to find out if certain situations make them ‘tic’ more or if they have any strategies which they find useful in calming their symptoms.

  2. Ensure your client feels comfortable asking for breaks

    Tell your client, from the outset, that they can take a break whenever they feel they need one. Knowing they can remove themselves from the situation, in the event their tics become overwhelming, will likely be a comfort to a client with Tourette’s/tic disorder. People with tic disorders also tend to try and suppress their tics. This can be incredibly fatiguing so be mindful your client may require breaks more frequently.

  3. Request a Ground Rules Hearing

    This will ensure everyone is aware of the individual’s diagnosis and measures to assist (if your client feels comfortable sharing this information). During the Ground Rules Hearing that everyone within the courtroom has been made aware of the diagnosis (and discuss how the condition will be explained to the jury during a criminal trial), so that people know what to expect and that any motor or vocal tics are not intentional. Suppressing tics can be incredibly fatiguing, so it can be helpful to ensure your client knows everyone is aware, so they don’t have to stifle them. Highlight the particular stress involved in giving evidence and whether your client might have more tics at this stage. This will also be an opportunity to outline strategies that may assist your client. For example:
    • Asking hearing participants not to respond to any vocal or motor tics.

    • Allowing emergency breaks (your client could be given permission to hold up a break card, for example). This could be used if your client is experiencing an overwhelming amount of tics and needs to immediately remove themselves from the courtroom. It could be your client is experiencing a tic attack. If this is something your client reports to be an aspect of their condition, it should be raised at the ground rules hearing and discussions should take place regarding what to do in the event of a tic attack taking place.

    • Scheduling regular breaks in order for your client to have time to recover physically from the fatigue involved in both ticking and suppressing tics. These breaks should be in addition to those usual breaks implemented for recapping and checking your client’s retention of information (if required).

  4. Recommend remote participation

    Anxiety is strongly linked to an increase in a person’s tics and therefore remote participation may alleviate some (not all) of this anxiety, enabling the person to participate more effectively. Participating remotely may be particularly helpful during your client’s evidence, as this is commonly the most anxiety-inducing part of the court process. Ultimately, a conversation should be had, to establish the personal preference of your client and what they believe will help them minimize stress and anxiety.

  5. Be patient

    Tics may interrupt a person’s speech but be patient, don’t finish their sentences or predict what they are going to say. Give your client time to express their thoughts.

To learn more about Tourette’s and tic disorders, visit the Tourette’s Action website and get involved with the #ItsWhatMakesMeTic campaign on Instagram, TikTok, Twitter, LinkedIn and other channels.