Madeleina Kay

Genetic Diversity, Nationalism and Eugenics

A few days ago I was trolled once again about my “wonky eyes”. One of the favourite insults of my Brexiter Twitter trolls is to mock me for suffering from a congenital disease known as ‘Duane’s Syndrome’.  

As a 25 year old British activist, I have not heard such pathetic insults since I was a child, from bullies in the schoolyard. Taking time out of lessons to attend appointments at the eye-hospital in Leicester, isolated me as a victim for the childish bullying about a genetic condition which affects 1/1000 of the population. 

Fortunately for me, the tests showed that although limiting the movement of my eye, the condition was not associated with any other abnormalities. However, 30% of cases are associated with major anomalies that may affect the skeletal system, ears, eyes, nervous system, kidneys and urinary tract. 

Alike with 90% of cases, mine occurred sporadically, however 10% are a result of genetic inheritance of mutated genes. The condition, is of no genetic advantage, and has a limited negative impact to my physical existence. The main impact, is social, as a result of bullying, teasing and abuse on social media. 

As a child, when I first heard of the concepts of ‘Eugenics’ such as the radical policies of Nazi Germany, I reflected that I could also have been classified as a “degenerate’. Perhaps my condition would not have been serious enough to have been deemed one of the “life unworthy of life” to be sterilised or “destroyed” under Germany’s 1930/40s policies of ‘Racial Hygiene, but it certainly made me empathise with those who had their lives so inhumanely ended.  

Genetic conditions often cause huge suffering, it is not however, a reason to devalue their lives and undermine their potential to achieve success. Genetic disorders can also have advantageous characteristics, even if it is just psychological development, such as perseverance and strength individuals have to develop, which helps them to overcome other challenges in their lives. Sometimes there are physical benefits, for example, high achieving Asperger’s Syndrome sufferers who struggle with social interaction and sensory-sensitivity, often have high intelligence and memory and an ability to think in visual images. The syndrome named after Hans Asperger, a paediatrician in Austria, assisted in the Nazi’s euthanasia programme. 

Often, it is not the genetic diseases themselves that are a risk or problem to society, but discriminatory responses of the society which marginalises sufferers, abuse them and deprive them of their human rights and in the most extreme cases ‘destroy’ them for being different. 

Genetic mutations result in diversity. And as an activist I been working to challenge racial discrimination, xenophobia and hate crime against migrants and refugees in the UK whilst championing the ‘European’ values of equality, unity in diversity, tolerance and peace. I believe passionately that diversity is the true beauty of life and greatly enriches our societies. The concept of the ‘Aryan Race’ is a fallacy. Diversity, is however also the cause of discrimination which populists and fascists exploit in order to further their agendas. And this is what scares me most about the recent historical developments in British politics and the rhetoric which is being disseminated by the UK media, where our own Prime Minister says “we must stop migrants making Britain their own”. 

Creating a fear of ‘the unknown’, the foreign, the different, through narratives of hate is creating a culture of intolerance and damaging diversity in the UK. The reason why the Brexiter trolls abuse me for a genetic condition, is because their hate for a genetic anomaly comes from the same place as their Nationalist mentality.  

As a British citizen, it is a sad truth, I can no longer call this country my home. And it would appear I am not alone in my feeling, as the Guardian reported record levels of Brits leaving for Europe, ‘84000 people are expected to leave Britain for another EU nation this year, compared with 59000 in 2008’. Having spent the last three and a half years since the Brexit vote in the UK, working alongside pro EU campaigners, UK expats and EU citizens in the UK, it is the culture of intolerance and hate which is driving many to leave, whilst causing anxiety and ‘Brexit Related Depression’ (BRD) for many individuals. I would consider these new expats to be ‘cultural refugees’, a community whose ‘European identity’ is under threat from a toxic culture of English nationalism. 

The question of how to fight Nationalist narratives of hate, and to champion diversity is a difficult challenge. Especially in a modern era where social media platforms have become the ‘sewer of the internet” allowing accounts to easily disseminate hate speech against minority or disadvantaged peoples. As an artist, musician and writer, I believe that we must lead a counter-culture revolution to overturn the power of populists. Through art, music and literature we can reframe narratives of diversity and migration to champion the differences which provide life with the beauty of variety. We need to harness the power of technology and use social platforms to “play the populists at their own games” – instead of engaging with their hate, we should ridicule it, and champion alternative narratives with a positive vision for the future of society.

Mutations are the root cause of diversity, it means we are not genetically identical, and we should not strive to live in a society of ‘Natural Clones’. Genetic variation enriches our society. Making it more diverse and interesting. By using the arts, we can tell human stories to inspire empathy amongst our communities and communicate the beauty of diversity. Using science as the bedrock of knowledge to inform understanding, creativity and imagination are essential to provide powerful communication that engages people on an emotional level. If we can appeal to the humanity of society, we can challenge the rhetoric of populism which poses a threat to global communities, and foster a culture of acceptance, tolerance and love. 

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1 Comment

  1. david maslin March 3, 2020

    …. when Caroline looked at me her eyes would flick up and we both knew and smiled ; it was a little trait that endeared me to her and seemed like part of her shyness. Maybe it was a strabismus!. I had not educated myself about the diversity of strabismus until your Duanes’ ‘admission’. I never recall noticing anything odd about the look of your eyes but have often assumed I am being ignored … (!!). As an A leveller I remember with some pride developing skill at dissecting cranial nerves in dogfish – made easier because the skull is cartilage not bone .. and once exposed the 6 orbital muscles with some speed and no bench in our ill-lit back kitchen cellar (the formalin vapour the reason for the location). Our Biology teacher ‘Benge’ taught us a rhyme by which to remember, in their order front to back, all 12 Cranial nerves ‘On old Olympus peak tip-top a(bducens- missing in Duanes’ Syndrome) Finn and German viewed a hop’ (hop here is a lake In Nordic, I think we were told). Note that the generic diversity that you refer to is only applicable to about 10% of those with DS. Much (most?) of the diversity we display has environmental components. This allows for optimism in battling populism – and in not accepting or appreciating diversity in general. This because it gives scope for education and life experiences within families and communities as potential remedies. X dvd
    PS I don’t forget how much your Brexiter ‘choir’ came to love you for your brave lone performances in Old Palace Yard

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