Episode 5 - Advocacy
Our guest Caroline, Mum to a disabled child and lawyer with long dark hair sits on a bench outside a cafe with a cup of tea
Click here to access the full transcript of this episode
In episode 5 Lauren and Rina talk about a skill we have all had to develop as parents of disabled children – advocacy - with Mum of two and lawyer Caroline MacPake (Withers professionally).
Systems of support aren’t always automatically in place for disabled children and their families, and the world simply has not been designed for disabled people. As parents of disabled children, we have to champion, persuade and shout loudly on our kids behalf.
Our interview with Caroline discusses the battles with getting a diagnosis for her daughter Dottie, the struggles she had to persuade the right people to listen and the impact this had on her mental health. We talk about the process of getting an Educational Health Care Plan, the complete f**kery of the system which most families experience and how this inspired Caroline to use her professional experience to support other parents going through the process. We talk a lot about the journey of acceptance and how even though Dottie is largely nonverbal, she is able to advocate for herself and communicate her wants and needs extremely successfully often getting exactly what she wants.
Trigger and Content Warnings
Death in early infancy
Misdiagnosis
Suicide
Struggles with mental health
Postnatal Depression
Guest Biography
Caroline lives in Surrey with her husband Matt and two children – Dottie (5) and Roo (3). Caroline has 20 years’ experience as a lawyer and has spent the last 10 years as Legal Director at Virgin Media O2 (previously with Virgin Media). Caroline is also Trustee of Support SEND Kids, a charity founded by lawyers to aid families in securing educational support for children with special educational needs and disabilities. Caroline’s current mid-life crisis is taking up the drums, and she can be found in her spare time re-living her teenage years rocking out to grunge music.
Resource Links
Support SEN Kids - charity connecting SEND families, professionals & lawyers https://supportsendkids.org/
SWAN UK - a great resource for families of children with undiagnosed genetic conditions https://www.undiagnosed.org.uk/
Hypotonia UK Facebook Group - a very supportive private facebook group for parents of children with diagnosed Hypotonia usually a symptom of another condition. Based in the UK
https://www.facebook.com/groups/350373958646991/
Statistics and sources cited in this episode are referenced here:
EHCP Tribunal Statistics -
https://www.gov.uk/government/statistics/tribunal-statistics-quarterly-july-to-september-2020
Social Model of Disability –
https://www.scope.org.uk/about-us/social-model-of-disability/
https://en.wikipedia.org/wiki/Social_model_of_disability
The social model of disability identifies systemic barriers, derogatory attitudes, and social exclusion (intentional or inadvertent), which make it difficult or impossible for disabled people to attain their valued functioning’s. The social model of disability diverges from the dominant medical model of disability, which is a functional analysis of the body as a machine to be fixed in order to conform with normative values.[1] While physical, sensory, intellectual, or psychological variations may cause individual functional limitation, these do not necessarily have to lead to disability unless society fails to take account of and include people intentionally with respect to their individual needs. The origin of the approach can be traced to the 1960s, and the specific term emerged from the United Kingdom in the 1980s.
