Consideration, respect and consent: supporting people with facial palsy and body dysmorphia

We love making sure our work can be enjoyed by as many people as possible, from providing British Sign Language Interpreters to subsidised tickets. Our drive to create better accessibility is an active learning process. We regularly partner with experts, organisations and people with lived experience of disability to ensure that their voices are present in the planning and delivery of creative projects.

We want people to feel as comfortable as possible during their time with us, and we are aware that comfort looks different to everyone, which is why, in 2023, we started our series of Exploring Access workshops. These workshops are led by deaf, disabled, neurodivergent and chronically ill creatives who share their lived experiences and provide an opportunity to create action points that attendees can embed within their practice / organisations to better support those living with similar conditions.

Our first Exploring Access workshop took place in September 2023 and was led by myself and writer and facilitator David Viney. The workshop focussed on our experiences of facial palsy and body dysmorphia in an image-dominated industry. It was the first time either of us had spoken so openly about our experiences. Thankfully we had a group of supportive participants, who were ready to listen and learn.

Dave and I ran presentations explaining what facial palsy and body dysmorphia are, the ways in which the conditions affect our lives, as well as providing an insight into how current industry conditions create barriers for us. After our presentations we worked with the participants to create a set of action points to share with you, in the hopes that we can all contribute to creating better conditions for those living with facial palsy and body dysmorphia.

Body Dysmorphic Disorder (BDD) is a distressing psychological condition where a person becomes very preoccupied with one or more features in physical appearance, e.g. nose, skin, hair, etc. Any body part could be the focus of concern in BDD.

People with BDD engage in time-consuming, repetitive behaviours to ‘fix’ or hide the perceived flaw/s which are difficult to resist or control (e.g extensive grooming regimes, mirror checking, reassurance seeking, camouflaging, seeking cosmetic surgery etc). BDD can seriously affect a person’s daily life, including work, education, social life and relationships. As a result, social anxiety, isolation and depression are very common in BDD.

• About 1 in 50 people suffer from BDD
• The cause of BDD is unknown but it is associated with bullying, teasing and childhood abuse/trauma
• Each year, 1 in 330 people diagnosed with BDD commit suicide
• NICE guidelines for BDD recommend Cognitive Behavioural Therapy (CBT) and SSRI medication
• BDD is a treatable and beatable condition

The term ‘facial palsy’ is an umbrella term which includes over 50 different medical conditions. It refers to a weakness of the facial muscles resulting from temporary or permanent damage to the facial nerve(s).

The causes of facial palsy are varied but can include infections, tumours and trauma. When the facial nerve is non-functioning, damaged or cut, the muscles in the face don’t receive the necessary signals from the brain to operate properly. This results in the paralysis of the affected part of the face.

Some episodes of facial palsy last for weeks or months. Other instances may last much longer, and some people never fully recover.

Symptoms include:

• Sudden weakness or paralysis on one side of your face, although in rare cases it may affect both sides.
• A drooping eyebrow and mouth
• Drooling from one side of your mouth
• Difficulty closing an eyelid, which causes eye dryness

Most often these symptoms lead to significant facial distortions.

• Facial pain or abnormal sensations
• Excessive tearing in one eye
• Problems with taste
• Low tolerance for loud noises
• Pain around the jaw and behind the ear
• Problems eating or drinking

• Facial pain or abnormal sensations
• Excessive tearing in one eye
• Problems with taste
• Low tolerance for loud noises
• Pain around the jaw and behind the ear
• Problems eating or drinking

People with facial palsy often experience poor mental health and can suffer from low self-esteem, depression and anxiety, and can struggle to connect with others.

The suggestions listed below were made by people who attended our workshop, including, musicians, producers, workshop facilitators, access support workers and managers, front of house staff, technicians, youth workers and medical professionals.

• When working with young people our ice breakers have exercises which rely on speaking or familial expressions so thinking of ways to not rely on expression or speaking or making loud sounds – making adjustments to ensure everyone can be involved and offering options that feel most comfortable for people.
• When sending artists into spaces with young people and participants with different abilities, prepare everyone by acknowledging someone’s condition, rather than being confronted with questions like, ‘what’s wrong with your face’. Obviously, you would need to ensure that people are comfortable with disclosing this information first.
• Be mindful of zoom meetings and ask if people feel comfortable with teleconferencing as it’s a go to way to meet at work. Offer phone calls or in person meeting options.
• Adding options around how you are filmed and lit and how you want to be audio described.

• We would naturally tell people about really loud sounds (like a bomb sound effect) but not loud-ish sounds, so it would be useful to add those in too, as well as music and where the sound sources were coming from directionally.
• Sit down and meet with people before something happens (e.g. event), explain the project and find out where their comfort levels are and what they might need. Discuss how certain things impact or affect them.
• Be mindful and ask if people are comfortable with camera on zoom meetings or people taking photographs of them at events. Encourage good communication and create a sense of community. Consideration, respect, and consent.
• Consider how you make people with different facial movements feel safe in a show.
• Consider adding clauses about the use of video / photos / off camera meetings in access riders.
• Ask and then model sessions around participants’ access needs.

• Asking access questions before someone has to come to you/disclose/tell you so they aren’t having to battle with negative feelings.
• Unlearning my own perceived need of wanting to see visuals, where actually challenging myself that I don’t actually need
• Having options that enable people to decide what they need without having to disclose or talk about anything.
• To be approachable and think about how access is intersectional – for example, being neurodivergent and not remembering names but remembering faces. Recognising you can’t make everything accessible to everyone all the time but can work in a way that finds an equilibrium that works for as many people as possible.
• Access as a template that is fixed and used again and again that doesn’t work for all, but also not a tag on either – learning new things and adding that into your new learning.
• Finding what everyone needs in a space and what the middle ground is for everyone to be comfortable and realising that ‘access needs’ are not just interpreters and wheelchairs.

• Creating guides about spaces which give more awareness about the environments you’re walking into, referencing things like the windows, lighting, reflective surfaces, and the temperature of the room.
• Giving examples on access riders for people who feel like their access need is not as valid as someone else’s are confident to share their needs.
• Thinking about who receives training like this, and who would benefit from it even more e.g. Usually a creative team or disabled team member who works in the office of a creative building, but not the people that the public meet e.g. FOH or technicians who will not have the same level of knowledge or context. How do you make sure volunteers are getting that information when the stakes are different?
• ASK: Don’t make assumptions.
• CONSENT: Photos, tagging, video etc.
• GIVE: Give space, be approachable, welcome conversatio

BDD Foundation website

Facial Palsy UK website

Useful Resources

An employee’s guide to facial palsy and the workplace