Chris Packham – Asperger’s and Me

For a gripping insight into what it might be like to have Asperger’s syndrome, watch Asperger’s and Me. Chris Packham is a familiar face from nature broadcasting on TV, where his encyclopaedic knowledge adds hugely to each programme’s value. That knowledge of natural history resulted from his boyhood enthusiasms, his escape from difficult human interactions, and his focus on factual reality. These things in turn are part of his Asperger’s.

Chris was not diagnosed until 40s, but already knew in his teens that he was ‘a little bit weird’. In his childhood his enthusiasms were total, taking over his … Read more...

Jean-Dominique Bauby – The Diving-Bell and the Butterfly

How can we even imagine what it must be like to have Locked-In Syndrome? Unable to move anything, but still completely conscious and aware. The account by Jean-Dominique Bauby challenges us to make the effort to do exactly that.

The Diving Bell and the Butterfly comes in several formats and each have their strengths. There is the book which was a sensation when it was first published in 1997 and which has since been translated into many languages. The French feature film was released in 2007 with an amazing performance by Mathieu Amalric. It is clear from this film that … Read more...

Edwyn Collins, Home Again

At the time of his stroke Edwyn Collins was a singer-songwriter with an international reputation, a founder of Glaswegian band Orange Juice, and with the hit ‘A Girl like You’ to his name. In February 2005 he had two haemorrhagic strokes, followed by neurosurgery, a period of hospital isolation due to MRSA, a time of hospital rehabilitation, and eventually return home in August in time for his 46th birthday. The strokes left him confused, aphasic, unable to read or sing, and with severe weakness and loss of sensation in the right side. Over the next eighteen months of hard work … Read more...

The Boy with the Incredible Brain – Daniel Tammet

What is autism and so-called ‘autistic spectrum disorder’? It is a question that is difficult to ask of many people with autism because of their acute linguistic and communication difficulties. On the other hand, will we get a useful answer by asking atypical individuals with ‘high functioning autism’ like Daniel Tammet, John Elder Robison and Temple Grandin, who are not only independent but able to write books and communicate about their perspective? Are their views representative of this group in society?

Daniel Tammet is on many measures an exceptional individual. He is a savant with exceptional numerical and memory skills. … Read more...

Untouchable

This is billed as a comedy, but it raises great questions about what someone might want from a carer, what makes a carer relationship work, and the ethics of power relationships within a carer relationship.

Almost by accident, black ex-con Drees becomes a live-in carer for Philippe, a wealthy cultured man with a tetraplegia. Drees’ main attraction for his employer seems to be a complete lack of pity. In addition Drees’ streetwise way of dealing with the secretary, with the neighbour that parks across the gates, with the policemen chasing them on a speeding escapade, and even his alternative dancing … Read more...

Notes on Blindness

How do you communicate to a seeing audience the experience of losing sight using the medium of video? Notes on Blindness makes a fantastic and memorable attempt at the impossible. John Hull went blind after a series of eye operations, finally losing his sight at the age of 45. He recorded his comments on what adult-onset blindness is like between 1983 and 1986, three years after the last eye operation in 1980. Actors perform brilliantly to a sound track comprising extracts from John Hull’s original tapes and extracts from some more recent recordings by him and his wife. (John Hull … Read more...

The Man Who Lost His Body – BBC Horizon 1997

IanWatermanStillIan Waterman is famous for relearning how to walk and function despite having no sense of proprioception. He lost all his sensation below the neck at the age of 19 after contracting a virus when working as a butcher, but after years of effort and persistence he made himself independent again. This film (and book) is his portrait and story, the product of a detailed collaboration with neurologist Jonathan Cole.

Jonathan Cole has written a detailed portrait of nearly 200 pages (Pride and a Daily Marathon), comprising not simply the story of Ian Waterman’s recovery, but a … Read more...

Dewey & Torpey – Nancy Mairs: Waist-High in the World

This documentary brims with humour, while at the same time getting right to the heart of the experience of the terrible disease that is Multiple Sclerosis. It allows Nancy Mairs to speak in a series of interviews and clips of public lectures, about her MS, but also about writing, about the inspirations for her writing, about her husband, smoking, infidelity, her dog, and being a grandparent. She is full of life, despite the limitations imposed by her MS. We can see her mobility problems, her breathlessness, the heaviness of her arms, the weakness of her grip and manipulation, and so … Read more...

Jane Hawking – Travelling to Infinity

This is the partner-carer story par excellence. Jane Hawking may have been the wife of one of the most extraordinary men of our times, but the choices, the strains, the relationship pressures, and the ways the home was destroyed by outside carers, these are the common concerns of most people caring for a severe disabled family member.

Stephen Hawking is such a famous person that his story has been told in documentaries, feature films and biographies. Jane Hawking’s story as his wife and carer should perhaps be read in the context of these other accounts, but as the story of … Read more...

Adrian Owen – How science found a way to help coma patients communicate

This article (or podcast) refers to one particular patient encountered by Adrian Owen in his investigations with people in coma. It is a short and very moving account of how clinicians used fMRI to enable a 38 year-old man in deep coma to communicate with the people caring for him. By imagining how to play tennis at particular moments Scott Routley was able to signal (either yes or no according to how the question was framed) by firing up his prefrontal cortex on the fMRI image, even though to neutral observers he seemed to be still deep in his … Read more...