Recent world events have quite rightly caused me, and much of the rest of society, to consider our relative privileged status. And reflect on the fact that minorities within society face significant challenges in their lives that many people may not even have realised existed.
Pleasingly this seems to have led to an increase in people’s interest in campaigning for positive change in things like legislation and more people looking to be allies to minority groups.
Eugenics developed as a sub-branch of the study of genetics. Large industries have developed out of the careful breeding of plants, to improve crop yields, make more interesting flowers or increase disease resistance. During the 19th Century, people started to consider whether the same ideas might be applied to people. In simple terms, the answer to this question is yes; if particular people have a child, they are more likely to pass on positive genetic attributes such as the probability that the parents of an Olympic athlete passed on athletic prowess. In a consensual relationship, this creates few issues. However, as the field developed, people started to talk about enforced control over breeding, which creates a vast range of ethical issues. There is not enough room to fully explore these here. But it includes the discussion on what are desirable characteristics, which inevitably excludes and devalues the people who don’t have those characteristics. The most famous example of this is probably the mass killing and sterilisation of a broad range of people under the Nazis, including people with a learning disability under the T4 programme. I was lucky enough to attend a fascinating talk on this at the Positive Choices 2019 conference by Helen Atherton and Florian Schwanninger, which really improved my knowledge in this area. I was surprised to learn that people from around the world, including the UK, found themselves victims of this program.
I must admit that before I began my studies, I probably considered eugenics to be a thing of the past, consigned to a similar part of history as Nazism. I was aware that discrimination remained an issue. Still, I probably felt both that it was significantly reduced compared to the past and that it was limited to people’s personal opinions rather than being the state-supported general consensus.
I am increasingly aware that my privilege significantly impacted that opinion.
I recently watched the Eugenics Science’s Greatest Scandal documentary on the BBC, which highlighted that for people with a disability, eugenics, though not called that, is potentially very much part of their life and the complicated ethical issues that go along with that. For example, does being able to genetically screen to avoid having a child with a particular disability devalue the life of a person with that condition? Will advances in genetic selection revive the idea of creating the ideal human, and if so, who decides what that is?
The recent Covid-19 crisis has brought sharply into focus the challenges faced by people with a learning disability and highlighted that eugenic thinking is still prevalent. I have every reason to think that life is as good as it has ever been in general for people with a learning disability. People are often able to live fulfilled lives in the community away from historical institutions. And increases in medical knowledge and technique mean that people are living longer than ever before. However, the Office for National Statistics has recently advised that two out of three people who died of Covid-19 had some sort of disability. And the CQC suggest that just between April and May the death rate for people with a learning disability, which was already above the national average, rose by 134%. There have also been reports of record numbers of requests for unlawful DNR orders for autistic patients and patients with a learning disability during the crisis. All of this leads me to think that for many people, the lives of people with a learning disability are somehow seen as less valuable than those of non-disabled people.
Why might this be? As I began to study more about people with a learning disability, I began to appreciate the challenges that they face. At around 1.5 million people, even collectively, they represent a relatively small part of society, getting their opinions across is further exacerbated by a high prevalence of communication difficulties. From a healthcare point of view, virtually all available evidence from government policy and research shows that people with a learning disability experience significant health inequalities. These inequalities are caused by general factors, such as social inequality. However, there are also discriminatory practices, such as diagnostic overshadowing, whereby symptoms are automatically attributed to the learning disability rather than the specific health complaint that the patient is presenting with at that particular time.
So what relevance does this have for us as student and newly qualified nurses? As a student and soon to be newly qualified nurse, I am passionate about trying to reduce these health inequalities and help people with a learning disability access the best possible care for the problems that they have. But I can’t be everywhere and do it all by myself. Whatever your field of nursing, it is highly likely that you will have a patient at some point who has some of these additional needs. It might feel scary and challenging to deal with, you might not know what do to, and that is okay. But I would urge you to take the time to give them the best possible experience. Have they brought a hospital passport detailing how to help them best? Do they have a parent or carer who could provide you with advice? Do you know a specialist nurse or doctor who you could consult with in the same way you might for a complex physical health issue? By working and learning together as newly qualified nurses, we can make healthcare a safe and helpful environment that is accessible for everyone.