‘As the stars stand’…

An enlightening piece in the September issue discussed Sharrona Pearl's book Do I Know You? From Face Blindness to Super Recognition and the life and work of neurologist and author Dr Oliver Sacks. Pearl mentions how Sacks and other authors use their patients as illustrations of disease biological progression and how it affects everyday life, noting that disability theorist Tom Shakespeare called Sacks' work a 'high-brow freak show', calling him 'the man who mistook his patients for a literary career'. As someone who is disabled and who has advocated for rights of the vulnerable for many years, I have a different take on this idea of discrimination with regard to Sacks and his use of his patients' conditions. 

Firstly, Sacks was not writing these books and articles for profit or to expose his patients in some way. Sacks was deeply concerned about his patients' welfare and took every precaution to hide any identifying characteristics. For example, on p.57 under the chapter Losses, Sacks writes of 'Christina' and p.189 of 'Rebecca':

"She has succeeded to an almost incredible extent in all the accommodations that will, courage, tenacity, independence… She has faced, she faces, an unprecedented situation, has battled against unimaginable difficulties and odds, and has survived as indomitable, impressive human being." (Christina)

"She could have been any young woman enjoying a beautiful spring day.  This was my human as opposed to my neurological vision." (Rebecca)

It is clear that Dr Sacks cared deeply about both the patient who fought this disease and the person underneath all of that. Yes, the disease had to be detailed enough for his readers to see themselves or other family members, friends or patients in the narrative. There was no internet – this was a way of getting the word out to as many people as possible about these 'ignored' diseases, trying to find others who may have had the same symptoms to come forward so treatments could be found and patients could support each other. Sack's mentions time and again under the heading 'post script' how people would write to him saying thank you for publishing something about their forgotten condition.

From the Victorian age until very recently, those with low IQ or what we would class as neurodivergence, were treated despicably. Most were hidden away at home or dumped in mental institutions and hospital back wards. Many sadly passed away without a thought from some staff, parents, siblings, family and former friends. Many were buried in mass unmarked graves. This angered Dr Sacks. He revealed how a male nurse would treat patients in an inhumane way: 'He's an idiot'. 

Even in our so-called modern society, psychological conditions still hold much stigma. Many sufferers lack a decent education, meaningful employment opportunities, equal pay, equal access to welfare benefits and good health care. So we would all do well to listen to Pearl's narrative, appreciating what Sacks was trying to achieve – education and awareness around those with complicated neurological conditions and mental illnesses, advocating for their acceptance within society and adequate research into effective humane treatments. 

I think it only right to leave the last word to Dr Oliver Sack's concerning our attitudes. Here he writes passionately about 'Jose', but is really directing his comments about all mentally and physically disabled individuals to you and me. Listen!

"He could do all these, but, alas, he will do none, unless someone very understanding, and with opportunities and means, can guide and employ him. For as the stars stand, he will probably do nothing, and spend a useless, fruitless life, as so many other autistic people do, over looked, unconsidered in the back ward of state hospitals."

Benjamin Thompson MSc 

British Psychological Society member

Psychological Professions Network (NE Branch)

Lived Experience Advisory Network

Cumbria, Northumberland and Tyne and Wear (CNTW) Mental Health NHS Foundation Trust