E202: Sarah Phillips - Living With an Incurable Disability

Trigger Warning: this episode discusses disabilities and life limiting conditions.Episode 202: Part of the Equity, Diversity and Inclusion Series (Part 20)Description: In this powerful episode, Naman Julka-Anderson and Jo McNamara sit down with Sarah Phillips. Sarah lives with two incurable conditions that shape her daily life. The first is a rare genetic neuromuscular disease caused by the absence of a gene needed to produce the myelin sheath, leaving her with an exceptionally unusual presentation even within a rare disorder. She also has a metabolic condition that causes her body to burn calories at an extreme rate, making it impossible to maintain weight without enteral nutrition and placing her at high risk of refeeding syndrome and related complications. Despite these challenges, she's committed to transforming her experiences into meaningful projects and businesses that support others living with chronic illness and disability.CPD Reflection Points:Reflect and consider how your assumptions about “ability,” productivity, or independence shape the way you interact with people living with disabilities or incurable conditions.Read this article and consider the impact of not being provided reasonable adjustments.Look up the George ASDA adult adaptive clothing range and consider how you can share this. Complete this form for your accredited digital badge: Digital Badge Form.Links from the Episode:Hereditary neuropathy with liability to pressure palsies(HNPP)The British Association for Parenteral and Enteral Nutrition(BAPEN)Demyelinating disease: What can you do about it?Intermittent Self Catheterisation - Bowel and Bladder CommunityFoot dropMencapMoney Saving Expert: Critical Illness CoverPersonal Independence Payment(PIP)Transfer of Undertakings(Protection of Employment)(TUPE)Natalie WoodwardResearch links from the Episode:Disabled people’s employment in the UK: A thematic review of the literatureThe role of workplace accommodations in explaining the disability employment gap in the UKEnabling inclusion: an analysis of positive and negative outcomes of discretionary work arrangements for employees with disabilitiesDisclosing non-visible disabilities in educational workplaces: a scoping reviewRad Chat Links:Rad Chat WebsiteLink TreeFacebookInstagramLinkedInTikTokBlueSkyYouTubeCredits: Music and jingle credits: Dr. Ben Potts and Adam Cooke.