The Frozen Light Podcast
We started a podcast to stay in touch with the PMLD community during the time of corona virus. You can listen to the podcast on Spotify, Apple Podcasts, Google Play, many more providers… and even on this website! See show notes below with further info on each episode. If you would like to get in touch or be on the podcast please contact podcast hosts Amber or Lucy on info@frozenlighttheatre.com.
Podcast Special- Chatting Changing Places with Zack Kerr
Recorded on 28th September 2020
Zack has been campaigning for more Changing Places at service stations since 2017. In July 2020 it was announced that Changing Places will be compulsory for new buildings in England from 2021. As part of that announcement, the Department for Transport and Muscular Dystrophy UK announced a 1.27 million fund to install 37 more changing places at service stations across England.
Episode Transcript
Zac on Twitter
BBC News- Changing Places toilets for disabled people to be compulsory
Changing Places Website
Mobiloo
Epilogue- Season One round up with Amber and Lucy
Recorded on 23rd July 2020
Amber and Lucy chat about what they’ve learnt through hosting The Frozen Light Podcast. By looking back and reflecting on previous episodes they visit some highlights and moments that have stayed with them. Featuring Sharon Slade, Joanna Grace, Emma and Hugh Murphy, Rachel Wright (Born at the Right Time), Dr Nicola Grove (Surviving Through Story), Lucy and Thomas Williams (Riding on a Star), Stephen Kingdom (Disabled Children’s Partnership), Sarah and Dan Walker, Stephanie Tyrrell (Sense), Carole Kelly (Jolly Josh), Reflect PMLD, Christine Singleton (Skiggle), and Bedford and District Cerebral Palsy Society. Thanks so much everyone, see you next time!
Episode Transcript
Episode 13- Interview with BDCPS
Recorded on 23rd July 2020
Amber and Lucy catch up with long time Frozen Light audience members, Bedford & District Cerebral Palsy Society. We chat to Rose and Ellie about how they have been supporting BDCPS families through lockdown, and preparing for their Summer play scheme.
Episode Transcript
Bedford & District Cerebral Palsy Society website
Bedford & District Cerebral Palsy Sociey facebook page
Spectrum Community Arts
“Whenever Changing Places facilities are provided, it is nothing short of life changing.”
Episode 12- Interview with Christine Singleton, Skiggle
Recorded on 22nd July 2020
Skiggle is a non profit online community for individuals, carers and families seeking care-based essential items. Amber and Lucy chat to Christine Singleton about Skiggle, the environment, life in lockdown and hopes for the future.
Episode Transcript
Skiggle website
Skiggle facebook page
Skiggle blog post- They are coming home!!
Hallelujah on Skiggle YouTube channel
Episode 11- Interview with Reflect PMLD
Recorded on 22nd July 2020
Reflect PMLD is a specialist daytime support service for adults with profound and multiple learning disabilities. We speak to Cath, Mark and Steve about techniques that are embedded into the organisation such as Intensive Interaction and Sensory Storytelling and how they’ve adapted the services during Covid-19.
Episode Transcript
Reflect PMLD website
Reflect PMLD facebook page
Starfish- PMLD Sensory adventures in learning (Peter Blaker storyteller)
Episode 10- Interview with Carole Kelly, Jolly Josh
Recorded on 16th July 2020
Amber and Lucy speak to Carole Kelly from Jolly Josh which aims to relieve the needs of people with complex needs and PMLD, their families and carers within Rochdale. We hear about the lockdown photography project with Jolly Josh families, and about the mitochondrial disorder storyline on Coronation Street.
Episode Transcript
Jolly Josh ‘A portrait of our families during #lockdown 2020’ picture gallery
The Lilly Foundation
Jolly Josh blog post- ‘When Coronation Street is our reality’ #mito
Mitochondrial disorder on Coronation Street
Jolly Josh facebook page
“And that can simply start from a smile rather than a stare”
Episode 9- Interview with Stephanie Tyrrell, Sense
Recorded on 15th July 2020
Lucy and Amber talk to Stephanie Tyrrell, National Arts Manager at Sense. We talk about Sense’s multi-purpose community space TouchBase Pears in Birmingham, and how the charity is adapting its arts provision for the people they support through lockdown and shielding.
Episode Transcript
Sense Blog Post- Keeping Sense Connected
Sense- Video content, includes activities to try at home
Sense- Arts, Sports and Wellbeing webpage
Sense arts plan- Space to be Different
TouchBase Pears
Episode 8- Interview with Sarah and Dan Walker, family carer
Recorded on 8th July 2020
We chat creativity in lockdown with Sarah Walker who is currently shielding with her brother Dan. We hear about her experiences of caring for her brothers Dan and Sam, and the importance of access and understanding that society still needs to develop. Featuring Dan on the Dream Drum and Keyboard.
Episode Transcript
Link to Be Creative Challenge Part 1
Link to Be Creative Challenge Part 2
Sarah’s blog- #bemoreSam
Hi Viz Shielding products
Link to Dream Drum
Sibs- Charity for brothers and sisters of disabled children and adults
Episode 7- Interview with Stephen Kingdom, DCP
Recorded on 3rd July 2020
Amber and Lucy speak to Stephen Kingdom from Disabled Children’s Partnership in regards to their recent survey of over 4,000 families to see how they’ve been impacted during lockdown.
Episode Transcript
Parent carers’ experiences of lockdown- Survey results
Open Letter from DCP chair, to parents who completed lockdown survey
‘Utter abandonment’ of special needs families during lockdown (BBC News)
Three quarters of disabled children have had their support withdrawn during lockdown (The Sun)
DCP- Secret Life of Us
DCP- Give it Back Campaign
Disabled Children’s Partnership website
Disabled Children’s Partnership facebook page
#leftinlockdown
“Everyone else seems to be going a bit more back to normal, and it actually feels more isolating now. ”
Episode 6- Interview with Thomas and Lucy, Riding on a Star
Recorded on 30th June 2020
Frozen Light chat to Thomas and Lucy from Riding on a Star about how they’ve been getting on in lockdown. We chat bubbles, shielding, and the benefits of eye gaze technology.
Episode Transcript
Riding on a Star facebook page
Riding on a Star Blog
Running & mental health blog post
Thomas on Dr Zigg’s website
Episode 5- Interview with Dr Nicola Grove, Surviving Through Story
Recorded on 25th June 2020
Frozen Light speak to Dr Nicola Grove, who along with Flo Hopwood and Katrina Arab, is the founder of Surviving Through Story. We speak about story sharing, its inherent value and the power of first hand stories of people with learning disabilities in a world where their voices are so often unheard.
Episode Transcript
Surviving Through Story facebook page
Surviving Through Story website
Open Storytellers
Abby’s Story- My visit to hospital
Joe’s Lockdown Barber Experience
Soundabout Virtual Choir
Cam on Wheels
Open University Social History for learning disabilities
Generate
Story Massage
The Therapy Tree (Ashleigh Padden- Speech Therapy/Yoga)
Dying, death, bereavement and learning disability- Irene Tuffrey-Wijne
Episode 4- Interview with Rachel Wright, Born at the Right Time
Recorded on 23rd June 2020
Frozen Light speak to Rachel Wright, founder of Born at the Right Time, Camp Jojo and author of The Skies I’m Under. We chat about family life in lockdown, and #bridgingthegap between families of children with complex needs and those who support them.
Episode Transcript
Born at the Right Time website
Born at the Right Time facebook page
Camp Jojo
RCPCH- COVID-19 ‘shielding’ guidance for children and young people
Reimagining communication and co-production with families post-Covid 19 training
“...what we would all like to see is the voices of people with learning disabilities, including people with PMLD, being heard and out there, and that is absolutely not happening”
Episode 3- Interview with Hugh and Emma
Recorded on 19th June 2020
In this episode Lucy and Amber speak to Emma and Hugh who are currently shielding with their family. We chat dogs, music, and the future!
Episode Transcript
Hugh’s Facebook page
Hugh and Barney’s video
Emma’s Blog- Little Mama Murphy
Story Massage Programme
Episode 2- Interview with Joanna Grace of The Sensory Projects
Recorded on 5th June 2020
In this episode Lucy and Amber speak to Joanna Grace- a sensory engagement and inclusion specialist, author, trainer, TEDx speaker and founder of The Sensory Projects. We discuss her Covid-19 resource page and the Supporting people with profound and multiple learning disabilities Core and Essential Service Standards.
Episode Transcript
Covid-19 Educational Resources
The Sensory Projects website
Supporting people with PMLD: Core & Essential Service Standards
Evaluation Report- Raising the bar through inclusive theatre
Raising the bar facebook group
twitter: @jo3grace
facebook (personal page)
Linkedin
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Episode 1- Interview with Sharon Slade, family carer and Frozen Light trustee
Recorded on 3rd June 2020
Lucy and Amber first met Sharon in 2015 when Sharon and her daughter came to see Frozen Light’s production of The Forest. Sharon is now a trustee in the role of Audience Advocate for the charity. In this episode they discuss Sharon’s experience of lockdown as a family carer.
Episode Transcript
Sharon and Lauren in audience comments from The Forest (the first in the video)
“...at the very least you’d expect there to be some kind of guidance as to what best practice looks like”
Intro Episode- Prologue
Recorded on 21st May 2020
Welcome to The Frozen Light Podcast! Frozen Light create multi-sensory theatre for audiences with profound and multiple learning disabilities (PMLD). In this introduction Co-Artistic Directors, Lucy and Amber, discuss the reasons behind starting this podcast.
Episode Transcript
Frozen Light Sensory Resource Kit- HOME
Frozen Light Sensory Resource Kit- The Forest
The Frozen Light Podcast jingle composed and performed by Al Watts.