Disability as a unique demonstration of diversity – not misery

By on February 14, 2017

A woman kills her 20 year old daughter and the public’s response is to call it a mercy killing. Donella Knox murdered her 20 year old daughter Ruby, who had severe Autism spectrum disorder and intellectual disability. The Herald reported that Ruby had a number of associated conditions in addition to this. “She also suffered Read More...


Dear Mamas podcast with guest, The One in a Million Baby

By on January 31, 2017

Before Christmas I got together with two fantastic women, Emily Writes and Holly Walker, on their podcast Dear Mamas which features on The Spinoff to talk about what it’s like to be a parent when someone in the family has chronic illness, medical needs or disability. We discussed Eva and The One in a Million Read More...


Episode 18: Savannah and David – And Yet We Rise

By on January 17, 2017

Episode 18 Transcript.  It is my very great pleasure to bring you our first Dad on the show. David Borden is a writer, artist and art teacher who lives in Austin, Texas. His eldest daughter, Savannah had Cerebral Palsy and died in March 2015, age 15. David writes about his daughter and about life at Read More...


Episode 15: Frankie and Carrie – living with Mowat Wilson and West Syndromes

By on November 1, 2016

Episode 15 Transcript When Carrie Avila-Mooney first got in touch with me, she said was a listener of the podcast and that she used the podcast as a kind of therapy for herself. She said in her toughest moments she had thought about what would she say if it was her episode, how would she Read More...




Can I be a feminist and a special needs advocate at the same time?

By on October 13, 2016

Two days ago I wrote a piece for The Spinoff Parents. I had just seen an article about Sally Phillip’s documentary “A World Without Down Syndrome”. In the Guardian article she discusses her concerns over making the non invasive screening tests for Down Syndrome available through the NHS. After reading the article I read another Read More...


Episode 14: Victoria and Ashley

By on October 1, 2016

Ashley Jones and her husband Keith had no idea of the rollercoaster ride they were going to get on when they had their first child, Victoria. Victoria, who is now a happy 22 month old, was born with a tracheoesophageal fistula (TEF) which is an abnormal connection (fistula) between the esophagus and the trachea, and suffered global Read More...


Parents sue over birth defect – can we blame them?

By on September 13, 2016

A New Zealand couple living in Australia are suing the medical professionals who allegedly failed to identify the condition for $2.5 million in damages. Their daughter, Aria, who is now two years old was diagnosed with Aicardi Syndrome after an MRI scan revealed the condition. Aria has impaired vision, hearing loss, scoliosis, a dislocated hip and developmental Read More...