Frozen Light Theatre talk about their new podcast created to connect with the PMLD community

Frozen Light’s foundations were formed from co-founders Lucy Garland and Amber Onat Gregory’s “shared dream of wanting to create high quality theatre for audiences with Profound Multiple Learning Difficulties (PMLD). Having created 4 shows and toured over 70 venues across the UK, their work has seen them collaborate with venues to promote accessibility for audiences with complex disabilities. In response to current theatre closures due to Covid-19, Frozen Light have created a podcast series sharing the experiences of people with PMLD, their carers and companions as they adapt during these unpredictable times. Frozen Light tells us more about what to expect from the podcast!

Hi Frozen Light, you’ve recently launched a podcast for people with Profound Multiple Learning Difficulties (PMLD), with current interviews featuring Dr Nicola Grove of Surviving Through Story, Rachel Wright – Sensory Engagement Inclusion Specialist amongst other guests. How have you approached programming who features on the podcast?

It’s been so interesting talking to all our guests.  We really wanted to hear a mix of voices from people who were supporting people with PMLD during this time.  We wanted to share the stories of families but also from organisations who were doing exciting work and supporting people with PMLD in different ways during these challenging times.

It’s been great speaking to some really passionate organisations, from a large nationwide provider to an amazing new day centre especially for people with PMLD. Overall, I think we have learnt how important it has been to share the stories of families from this time.  It has enabled us to show a range of different very personal stories and experiences and really dig down into what life for someone with PMLD and their families has been like during lockdown.

A response to the current Covid-19 crisis, the podcast offers an opportunity for people with PMLD, their carers and companions to share their experiences of shielding and supporting individuals with complex needs from home. Have you found that there have been particular issues/topicsthat have arisen from these conversations?

The overwhelming theme has been how forgotten people feel.  People with PMLD are already very invisible in society, but lockdown has made them even more so.  Quite a few of the people we interviewed have been shielding since March meaning that they have become even more invisible. Many of our interviewees have children or support people with very complex health needs and none of them received a shielding letter because it seemed that the authorities all thought someone else would send them one.  This has led to a feeling of abandonment and disregard and that society in general really doesn’t care what happens to them and their loved ones.

It has been observed that many people with PMLD have actually thrived during this time as they are being allowed the time and space they need, they are spending more time with the people they love and actually getting enough sleep.  So often people with PMLD are made to conform to societal norms and fit into those routines when this quite often isn’twhat is right for their physical or mental health. Lockdown has allowed a slower more focused pace of life which has really benefited many people with PMLD.

One very practical point that keeps arising is the desire for virtual hospital appointments to continue.  Many of our audience with PMLD can spend an awful lot of time at hospital, which can be quite distressing for them.  The introduction of virtual appointments has meant that a lot of this unnecessary stress has been removed.

A useful resource, the podcast helps to raise awareness of PMLD from various perspectives and break down barriers currently caused due to Covid-19. What have responses been towards the podcast so far?

Responses have been really positive,and we are hoping the longer it is out there the more visibility it will raise for our audience of PMLD.  We are reaching a different group of people than we reach with our theatre shows which is a new avenue for Frozen Light.

Many of our interviewees feel very forgotten and we hope that by getting their stories out into the worlditwill support people with PMLD to become more visible and make the authorities think more about the needs of this group.  We need to stop labelling everyone who is shielding as vulnerable as this creates a culture of pity which is not helpful in making things better for people.  We need to see people as individuals who all have their individual reasons for shielding, be that age, medical conditions, complex health needsor something else.  We need to support these individuals to ensure that as society reopens, they are not further forgotten, and society doesn’t regress and become less accessible for these groups in the name of Covid-19.

Have you learned anything new from creating the podcast?

I feel like I have learnt so much from creating this podcast and that it will be an invaluable resource for new people coming to work with Frozen Light in the future.

It has been fascinating to hear about all the ingenious things people have been doing in lockdown from an 80’s UV disco to a cake designed around the theme pond life! The creativity and energy of the families and people who care for and support people with PMLD is astounding.  If you ever want a group of people who think outside the box these are your guys!

But also the level of fight and commitment that these people have takes your breath away.  Mothers who have fought for their child’s right to oxygen, parents who fight for the correct care service for their adult child so that they can actually live a fulfilling life in adulthood, sisters having to justify their brothers rights to access live culture.  All of these things are basic human rights and yet these families and carers have to fight for these things every day, it’s appalling, but also a testament to these families, but it is not fun fighting all the time, it is exhausting and society needs to wake up and realise the huge value and potential of people with PMLD and when we do then these families will not have to fight because people’s basic human right will be met as they should be.

Your live work places accessibility and sensory elements at the core. How have you both adapted your practice within this time?

When we tour, everything we do is about working directly with people with PMLD and making the theatre accessible for them.  What has been weird about the podcast is that we have notbeen reaching people with PMLD directly, we have been talking to their families and support staff.  This has felt a bit uncomfortable for us at times but as the podcast has gone on,we have realised the huge value of these stories.  It has made us realise that not only are our audience with PMLD forgotten and invisible,by default so are their families and carers.

We are interested in creating a project inspired by Dr Nicola Grove (episode 5) to tell those stories directly from people with PMLD.  Through the podcast we have realised the huge value of sharing people’s stories and we want this to include all our audience, not just their carers and families.

When lockdown hit,we were in the middle of creating our next touring show,2065. We currently feel that we need to complete this show regardless of when it tours, to enable us as artists to move forward.  Therefore, we plan on returning to the rehearsal room in September to finish the show.  From speaking to our audiences there is such a mix of opinions of when they think people with PMLD will be able to return to the theatreand we will re-evaluate this question in October.  It feels important that alongside making the live show, we create a version for our audiences who may be shielding for a long time yet and this is something we will work on in the Autumn.  We have some exciting ideas for this so do watch this space…

As restrictions begin to ease, how do you envision Frozen Light’s work going forward? Will the podcast continue?

As a company, our commitment and passion lie with live performance and it has been incredibly challenging for us to envisage working in any other medium. Our audience with PMLD primarily access the world in a sensory way and it is this element of our work that is our audience’sway into the stories that we tell. We work with small audiences of 6 people with PMLD and their support staff/family members to enable the actors to have one to one sensory interactions with the audience, these involve working in very close proximity to our audiences and often require an element of touch.  This is all very difficultin a post Covid world, but we are trying to figure out how we can continue to create truly accessible theatre and keep it safe for our audiences.

In the future, I believe it will be about working in a number ofdifferent mediums but with live theatre still remaining our priority.  We will be evaluating new ways to make performance which can keep our audience and performers safeas this is our number one priority and we would never do anything to put this in jeopardy.

As we move forward, we are also eager to grow and diversify our team. We are currently recruiting board members which will be an exciting opportunity to join Frozen Light on the next stage of our journey. Also, Natalya Martin from FEEL theatre has recently written an open letter to the sensory theatre sector about the lack of black sensory theatre artists in this group. We are keen as an organisation to look at the wider impact that we have within the sector.

We have now finished recording season 1 of the podcast.  Once all episodes have been released,we will have some time to reflect on it.  I don’tbelieve this is the end of our podcast journey,but it might be that as Frozen Light move forward the podcast evolves into something else.  We have ideas for different themed seasons, but we will see.  Put it this way, I don’tthink the podcast journey is over!

What can listeners expect from the podcast?

You can expect to hear from parents, carers and organisations who support people with PMLD about what life is like in lockdown.  We discuss what people have been up to, their hopes for a post Covid future and give the listeners insight into people’s lives.  The podcast aims to increase the visibility of people with PMLD to ensure that they are not forgotten during this time.  Overall, I hope it is an enjoyable listen in which people can learn something new, hearing from voices which aren’t often heard.

Questions by Lucy Basaba.

To find out more about Frozen Light Theatre’s work, visit here…

To have a listen to the podcasts available, visit here…

To have a read of Co-Artistic Director of Frozen Light Theatre Lucy Garland’s interview about their past production The Isle of Brimsker, visit here…