I have been away in London for a couple of days of meetings and events. It’s been a week which has seen my head and mind in the space of technology, not least Ai, and its potential benefits and challenges to the social care sector and I hope to write about Ai in social care in a future blog.
But it has also been a week where I have been thinking about identity and what makes us truly human. My week of reflecting about identity started with the news on Tuesday that the Tech billionaire Elon Musk’s Neuralink company had successfully implanted one of their wireless brain chips in a human being.
A BBC article on the event stated that Musk’s company had joined a group of a handful of other companies which had undertaken such implants. It noted that:
‘Among the other companies to make similar advances in the field is the École Polytechnique Fédérale in Lausanne (EPFL), in Switzerland, which has successfully enabled a paralysed man to walk just by thinking. That was achieved by putting electronic implants on his brain and spine which wirelessly communicate thoughts to his legs and feet.
Mr Musk’s company was given permission to test the chip on humans by the FDA in May 2023. That gave the green light for the start of the six-year study during which a robot is being used to surgically place 64 flexible threads, thinner than a human hair, on to a part of the brain that controls “movement intention”, according to Neuralink.
The company says that these threads allow its experimental implant – powered by a battery that can be charged wirelessly – to record and transmit brain signals wirelessly to an app that decodes how the person intends to move.’
Over the next few days, the media was filled with discussion and debate on the risks and benefits of such developments. There are clearly a whole set of ethical issues involved. Is it appropriate that to achieve such ‘progress’ that so many animals are killed during experimentation? Does the technology raise issues of equality given that the majority of those 22,000 people who by 2030 will have had a potential implant fitted will have to pay for it? Are such processes leading to the commoditisation of human beings? What happens to the data that is created by such an implant? Will we be able to ‘download’ the mind? Where is the data to be stored? What happens when the person dies, and the chip is removed? There are as many ethical questions as there are potential answers.
But one question which intrigues me for the purpose of this blog is the extent to which such ‘brain chips’ and the massive resource attached to their development seem to be premised on a particular understanding of the human person and what constitutes a ‘whole’ or ‘purposeful’ person or life. It is a question about human identity. It is this question that has been part of the disability civil rights movement for many decades. The answer from that movement led to the social model of disability which states that it is not the person with a disability who is limited or ‘disabled’ but the way in which society and the environment is structured which serves to limit or restrict a person. We have – or so many might have thought – moved away from a medical or clinical approach to disability which tried to ‘fix the problem’ and which was premised on a notion of human wholeness if not perfection.
So not surprisingly in response to the Musk story and other similar ‘implants’ there has come the assertion that whilst many individuals – perhaps those who have become paralysed as a result of an accident – may indeed find such technologies as potentially liberating and curative, there are thousands of others who define their very identity and self through their disabilities. Is there a danger that these new approaches and technologies will seek to neuter disability? Will they place an even lesser value on those who are not deemed ‘whole’? There are a whole flood of ethical concerns in these new technologies.
Some of those questions came to my mind when in a spare hour I visited one of my favourite exhibition spaces in London, the Wellcome Collection, which is just opposite Euston Station. A great place to stop by before getting the train north. Its current temporary exhibition is entitled ‘The Cult of Beauty’. Displaying over 200 objects, paintings, films, and interactive displays the exhibition explores notions of beauty across time and cultures. It states:
‘Around the world, beauty is constantly seen as an ideal worthy of going to great lengths to achieve. But what are the driving forces that lead us to believe in a myth of universal beauty, despite its evolving nature?’
It questions established norms on beauty, demonstrates the influence of culture and not least gender on changing attitudes, challenges stereotypes and presumptions including some of those that exist around age. One of my favourite installations was Makeupbrutalism’s multimedia installation entitled ‘It makes no sense being beautiful if no one else is ugly’ and which ‘encourages us to question our beliefs, confront our raw selves beneath social pressure and to peel back the layers of the beauty industry.’
‘We have created ideals of beauty which very few can live up to. We include and celebrate those we have assigned beauty to and exclude those we think are ugly. These hierarchies are harmful. When beauty becomes privilege, that is harmful.’
In a week where the very concept of identity was uppermost in my mind with reflections of what makes us who we are in Musk’s ‘brain chip’ future the exhibition quite rightly addressed the idealisation of the male and female human body not least in Greek and Roman art which has been so dominant in western culture. But sadly, for me at least, what was noticeably absent (except in a tangential way) was a direct challenge to the body idealisation that has ‘disabled’ so many millions across the ages. Such ‘disablism’, the viewing of disability as something not perfect or needing changed has been present from biblical narratives when those who were physically ‘not whole’ were the object of healing to paintings of medieval perfection which presented unpopular kings as ‘hunchbacks’ to the horrors of the way in which the study of faces ‘physiognomy’ was used by Nazi extremists as the tool of eugenics. All such responses based on an ideal which gave no room or tolerance to individual identity and certainly not to physical or intellectual disability.
Social care and support is perhaps in a unique place in being able to provide the space and affirmation, the authenticity and validation that enables a person to celebrate their unique identity. Social care at its best challenges the ‘wholeistic’ assumptions about disability, capacity and contribution and allows people to be who they are.
That is why social care and support is so important – it is not trying to fix someone in a clinical way, because of an inherited conscious or subconscious assumption that someone is not whole and must be ‘healed’, but it is rather fostering the ability for that person to become fully who they are and to thrive within their identity. It is truly identity affirmation at its best.
So regardless of age or appearance, label or limitation, social care support accepts and affirms the person for who they are. That’s why it matters and why it needs to be valued even more in a world of technological change, ‘brain chips’ and fluctuating ethical values. For me that is the essence of real beauty.