Show Notes
Join Rachel, Sarah and Lucy as we celebrate those people who change the world, be it campaigning for the right to medical treatment, supporting other parents, breaking down barriers, or just making a nuisance of themselves to get the voices of disabled people heard. On this week’s episode we open up by reflecting on some of the world changers we know*, and reflect on why and how this is different for the disability community. Rachel is then joined by Hannah Deacon, whose dedication to campaigning for patients' rights succeeded when the law changed on 1 November 2018, which led to cannabis becoming legal as a medical treatment. Her successful campaign on behalf of son Alfie Dingley, who lives with a rare and severe form of epilepsy, led to his doctors receiving the first schedule one license to prescribe whole-plant cannabis in the UK. You can find more about Hannah and her work at her website. *As promised - Sarah’s World Changers:
Lynne Elwell who works with Julie Stanfield who is the CEO at In Control and developed Partners In Policy Making Jayne Leeson - CEO at Changing Our Lives Lynne James Jenkinson - CEO at North West Training and Development Team (NWTDT) also a parent to many including an amazing young woman with Downs Syndrome. Robert Punton - poet and disability rights campaigner, who Sarah Met through The Alliance for Inclusive Education Joe Whittaker - Joe died a couple of years ago but was a passionate campaigner and all round incredible human. He was a lecturer at Bolton uni and included MANY people who would not have had access to higher education without him. Martin Routledge - convener at Social Care Future and an EXCELLENT Elvis impersonator Janet Cobb - started the learning disability email network many many years ago. Was at NWTDT and worked with Lynne Elwell for a long time Dave Hingsburger- one of the most influential people I have ever heard speak -Friends Not Family Samantha Clarke - Learning Disability England Debra Moore - first met when she was the health lead for Valuing People. Now provides consultancy. She is bloody brilliant and well worth connecting with Helen Laverty - started Positive Choices many years ago.
The Trio also discuss Single Case Experimental Design which you can find more about here or by watching this video. Thanks to the lovely folk at Jiraffe for sponsoring this week's episode. You can find more about them and their work here. We’d love to hear from you – we love sharing stories, we love hearing how things are going, the good, the bad, the snotty-crying ugly. You can leave a message with us in a number of ways:
Firstly you can leave a message using speakpipe here: SpeakpipeTSWU
(Please note calls need to be limited to 90 seconds)
You can send us a voice note from your phone to our email address at [email protected] Or, if the thought of hearing your own voice gives you ‘the ick’, then send us an email to [email protected]
Whatever way you choose to get in touch, we really want to hear your thoughts, views, musings, rants and confessions (we love a confession!) . Thanks for listening and being a part of our podcast community -It would make our day if you could like, follow and review the podcast wherever you listen. We’re so happy that The Skies We’re Under is a free, independent podcast. Any sponsorship received is used to cover the costs of the production of episodes and compensate our valuable guests for their time. The hosts provide their time and efforts for free. They do, however, appreciate any offers of caffeination to keep them going – you can buy them a cuppa here… Follow us on Instagram @BornatRightTime. Head to www.bornattherighttime.com to find a parent workshop or CPD-certified training for practitioners in communication, collaboration and personalised care with parents/carers.
More from The Skies We’re Under
Our final episode of Season 5 is Rachel, Sarah and Lucy give the slightly sweary warts and all version of life, stresses and loves of parenting a disabled child with the full expectations of summer Less support + Less equipment + Less routine + Higher expectations = Holidays Lucy swears more than normal, spoiler alert (none of us have managed a relaxing summer break yet) and we’re all a bit p****d about all the Instagram spam of leisurely summer family trips away.* Please rate, review and follow the podcast. You can also email [email protected] *There is much to be grateful for and we love our children Blah Blah Blah... Find more about Family Fund for financing holidays here and other grants available in the UK here. Find out about Camp Jojo here Thanks for listening and being a part of our podcast community. It would make our day if you could like, follow and review the podcast wherever you listen. For questions, disability hacks or to share your story, you can email [email protected] - we would love to hear from you. You can leave a message with us in a number of ways: Speakpipe here: https://www.speakpipe.com/TSWUpodcast (Please note calls need to be limited to 90 seconds) You can send us a voice note from your phone to our email address at [email protected] Or, if the thought of hearing your own voice gives you ‘the ick’, then send us an email to [email protected] Whatever way you choose to get in touch, we really want to hear your thoughts, views, musings, rants and confessions (we love a confession!) . ‘The Skies We’re Under’ is taking a pause as we shore up funding (hopefully) for another season. Until then, we hope the rest of your 2026 brings some fun, joy and smiles, whatever Skies You Are Under.
Rachel and her husband Tim talk all things travel. From child-free teen-dom in Turkey to the highs and lows of ‘holidays’ when you choose to make life even more complicated than it is at home. Whilst it doesn’t shy away from the genuine sh*t show that we’re often presented with, they also share numerous top tips and moments of joy, including: The Bendrigg Trust Hippocampe Make A Wish Foundation Canvas and Campfires; Center Parcs and Camp JoJo Thanks for listening and being a part of our podcast community. It would make our day if you could like, follow and review the podcast wherever you listen. For questions, disability hacks or to share your story, you can email [email protected] - we would love to hear from you. You can leave a message with us in a number of ways: Using Speakpipe here: https://www.speakpipe.com/TSWUpodcast (Please note calls need to be limited to 90 seconds) You can send us a voice note from your phone to our email address at [email protected] Or, if the thought of hearing your own voice gives you ‘the ick’, then send us an email to [email protected] Whatever way you choose to get in touch, we really want to hear your thoughts, views, musings, rants and confessions (we love a confession!) . ‘The Skies We’re Under’ continues to go from strength to strength with over 100 episodes already. There's still so much to discuss and share with our wonderful listeners, the families of people with complex disabilities and the many practitioners that support us. Moving forward we need your help to keep producing new episodes. Email us to find out more [email protected].
A special episode for The Skies We’re Under with Carrie Grant and Samantha Flynn, hosts of the Cerebra Podcast The Calm in the Complicated. As a part of Cerebra’s six-episode series, Rachel joined the conversation to explore the overwhelming life admin families face when raising a child with a brain condition. Together Carrie, Sam and Rachel unpack the emotional weight of endless paperwork and share practical, compassionate strategies to help parents feel less alone. This episode offers honest conversation, reassurance and practical strategies for managing the hidden second job that so often comes with parenting in the SEND world. A validating listen for any parent feeling overwhelmed by the systems surrounding their child. The episode covers:
Jo Holmes is our resident expert on all things communication (and put together this recast series). Blogger at Mummy Vs AAC, Speech and Language Therapist and parent of a daughter with complex needs. In this conversation she opens up about her relationship with laminators and gets real about the how she had to rediscover how to really connect with her daughter. TRIGGER WARNING – Please note – right from the start, we have discussions around end of life care plans and DNACPR. IF this is something that will be upsetting and triggering to you please skip this episode, or fast forward to 7 minutes. To find out more about Jo, and the resources she’s passionate about please go to: Mummy Vs AAC About Jo Resource Bank HOP | Hanging Out Program Interaction for People at Risk of Isolation Thanks for listening and being a part of our podcast community. It would make our day if you could like, follow and review the podcast wherever you listen. For questions, disability hacks or to share your story, you can email [email protected] - we would love to hear from you. If you have any ideas or resources might support us being able to continue the podcast we would also love to hear from you. We’d love to hear from you – we love sharing stories, we love hearing how things are going, the good, the bad, the snotty-crying ugly. You can leave a message with us in a number of ways: Firstly you can leave a message using Speakpipe here: https://www.speakpipe.com/TSWUpodcast (Please note calls need to be limited to 90 seconds) You can send us a voice note from your phone to our email address at [email protected] Or, if the thought of hearing your own voice gives you ‘the ick’, then send us an email to [email protected] Whatever way you choose to get in touch, we really want to hear your thoughts, views, musings, rants and confessions (we love a confession!) . ‘The Skies We’re Under’ continues to go from strength to strength with almost 130 episodes already. There's still so much to discuss and share with our wonderful listeners, the families of people with complex disabilities and the many practitioners that support us. Moving forward we need your help to keep producing new episodes. Email us to find out more [email protected].
Dr. Beth Moulam, Paralympian, researcher, advocate and award-winning all-round superhuman chatted with Rachel back in season 4. Beth shared her thoughts on the communication tools we all use, and the tools she uses. The challenges she faces (spoiler alert – it’s normally other people), and the joy she finds in creating new connections, and creating community around her, in the breathtaking number of fields she’s involved in. Rachel, Sarah and Lucy bring updates and reflections, there’s news from the Moths, and Lucy broke a TSWU record, by swearing right from the outset – having to bring “all your BLEEPING podcast BEEP to work is not the best way to start the day! You can find more about Beth on her website and you tube page. Since this recording she’s also written a book which is due in the Autumn and available for pre-order now. Thanks to the lovely folk at Liberator for sponsoring this week’s episode. You can find more about them and their work here. Thanks for listening and being a part of our podcast community. It would make our day if you could like, follow and review the podcast wherever you listen. For questions, disability hacks or to share your story, you can email [email protected] - we would love to hear from you. If you have any ideas or resources might support us being able to continue the podcast we would also love to hear from you. We’d love to hear from you – we love sharing stories, we love hearing how things are going, the good, the bad, the snotty-crying ugly. You can leave a message with us in a number of ways: Firstly you can leave a message using Speakpipe here: https://www.speakpipe.com/TSWUpodcast (Please note calls need to be limited to 90 seconds) You can send us a voice note from your phone to our email address at [email protected] Or, if the thought of hearing your own voice gives you ‘the ick’, then send us an email to [email protected] Whatever way you choose to get in touch, we really want to hear your thoughts, views, musings, rants and confessions (we love a confession!) . ‘The Skies We’re Under’ continues to go from strength to strength with almost 130 episodes already. There's still so much to discuss and share with our wonderful listeners, the families of people with complex disabilities and the many practitioners that support us. Moving forward we need your help to keep producing new episodes. Email us to find out more [email protected].