Culture our choices

What we’re INTO

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Reviewed by Claire Li, Creative at Same but Different

INVISIBLE MANNERS

A SHORT FILM BY NIEMANN-PICK UK In today’s society kindness can go a long way. We hear from 90% of people that we meet with a rare condition or disease that they feel judged, experience a lack of understanding from others, and at times are stared at. Sadly, this is often the norm for peoplewith a rare condition. Niemann-Pick UK has worked with industry talents from Billy Boyd (Lord of The Rings) to animator Lingxi Zhang, to raise awareness of rare diseases. John Lee Taggart, Communications & Campaigns Manager for Niemann-Pick UK, wrote a moving poem that became the basis for a stunning animation entitled Invisible Manners. It highlights the feelings, emotions and challenges people within the Neimann-Pick community feel on a daily basis, while drawing attention towards matters such as isolation. The film aims to teach us about not making assumptions and comes with the important message; “be kind, wear a smile.” We believe that this brilliant short film should be shared far and wide, starting in schools. Highly recommended.

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Reviewed by Ilmarie Braun, Project Manager at Same but Different

THE SKIES WE’RE UNDER: PARENTING DISABLED CHILDREN

PODCAST SERIES WITH RACHEL WRIGHT The Skies We’re Under is a podcast by and for parents of people with complex disabilities created by Rachel Wright. Rachel is the author of 'The Skies I'm Under: The Rain and Shine of parenting a child with complex disabilities' and the founder of Born at the Right Time Limited, a company which aims to #bridgethegap between principles and practice, policy and provision. Her fabulous new podcast series was launched in February 2022 and is made up of 21 episodes, hosted by Rachel in partnership with her regular guests Lucy Parr and Sarah Clayton. Each episode is loosely based around one, or several topics, the conversations are relaxed and often end up in unexpected, and funny places. Whilst the series deals with some really difficult themes I found myself laughing as often as I cried. Most importantly, through listening to these strong and relatable women sharing their own experiences, I found echoes of my own life, which made me feel validated and heard. Often in the rare disease world, or as the parents of disabled children, our experiences are different to those of our friends and family, it is easy to feel alone, to feel isolated; so to listen to others talk about lives we can not only imagine but are also living is hugely powerful. A must listen!

What we’re READING

DAY BY DAY: EMOTIONAL WELLBEING IN PARENTS OF DISABLED CHILDREN

JOANNA GRIFFIN Joanna Griffin is a Charted Counselling Psychologist, but more importantly she is the parent of a disabled child. Her brilliant book Day by Day is written using the knowladge and experiences gained over the years from both her own parenting experiences and from her education work, and her continued research into caring for children with disabilities. Day by Day offers simple, down to earth advice and looks in depth at seven areas that can help support parent carer wellbeing, offering tips and strategies throughout. As a parent carer life can often feel overwhelming, and the many and varied challenges that arise mean that all to often parent carers are forced to neglect their own emotional and physical needs. When coupled with social care and public healthcare systems that have both been cut to breaking point, resulting in increased caring burdens for many families, it is ever more crucial that we look after and try to maintain our own mental health. This brilliant book is one tool that you can use to do just that, a way to ‘take active steps to maintain our emotional wellbeing on a daily basis.’

DRIVING FORWARDS

SOPHIE MORGAN When I first saw Driving Forwards promoted I thought I knew what it would be about; a beautiful young girl tragically paralysed in a car crash, but goes on to lead a full, exciting and inspirational life as a TV presenter, which it is, but it is so much more! Sophie is unflinchingly honest, and offers us some true insights into many aspects of her life, and her bumpy journey towards becoming who she is today. It is no secret that society is, by and large, hugely ableist, and Sophie explores how long, and how hard she tried to minimise her new differences, her needs, to make herself easy, manageable, and in many ways invisible. “Within my group, no one seemed to acknowledge my disability. This was something I’d always welcomed and found emboldening. My friends often told me they forgot I was disabled, which I took as a compliment… (but) my disability was part of who I was.” When reflected against how she views herself as a woman a stark discrepancy emerges, because even as a young teen she was not afraid to claim her space in the world as young woman who was strong, independent, wild and fearless. That is what makes this book so utterly compelling, Sophie’s own journey towards re-claiming her place in the world, and her right to be happy as a strong, independent, wild and fearless disabled woman who is absolutely entitled to be seen, to be heard, and to have her needs met.

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Book reviews by Ilmarie Braun, Project Manager at Same but Different