Disability, Inclusion and Science

David Ruebain, speaking to the Wellcome Genome Campus. Image: Wellcome Sanger Institute, Genome Research Limited

Below, David Ruebain writes about changing attitudes towards disability over the last 50 years and the work still to do.

David is currently Chief Executive of the Conservatoire for Dance and Drama. Prior to that he was Chief Executive of Equality Challenge Unit, a policy and research agency funded to advance equality & diversity in universities in the UK. Before that, he was a practising solicitor for 21 years; latterly as Director of Legal Policy at the Equality and Human Rights Commission of Great Britain.

Disability, Inclusion and Science

Professor Stephen Hawking. Image credit: StarChild Learning Center, NASA
Professor Stephen Hawking demonstrated that disability was no barrier to the scientific excellence. Image: StarChild Learning Center, NASA

He may never have intended this (and I doubt ever wished it) but among his many celebrated achievements, the late Stephen Hawking (pictured right) smashed the idea that scientific excellence and disability are incompatible. Hawking was diagnosed with a progressive impairment in the early 1960s, a time when disabled people were systematically segregated in education and indeed life (although had begun to change as a result of many young soldiers returning from the war with severe injuries). He became disabled after commencing his university studies and so did not face early experiences of disability exclusion and oppression but he certainly did later on in life. He played a key role in challenging prejudice and assumptions.

At the time of his growing reputation in the 1960s and 1970s, a nascent disability movement was emerging in the UK and elsewhere. Born out of growing frustration and fury at the limitations that society placed on the expectations, ambitions and indeed lives of disabled people, growing numbers of activists began to organise outside of the more traditional disability charities (which were overwhelmingly run by non-disabled people) into self-organised, multi-impairment groups, such as the Union of the Physically Impaired Against Segregation (UPIAS) and Sisters Against Disablement (SAD). This long and wonderful story has been written about and studied by many but suffice to say that eventually, this civil-society activity engendered a paradigm shift in understanding of disability and disabled people’s lives through the development and propagation of what has become known as the Social Model of Disability.

The Social Model of Disability

In brief, the social model postulates that there is a critical and material difference between a person’s medical or quasi-medical condition or diagnosis on the one hand (one is called their impairment) and society’s response to it on the other (their disability). By way of example, the reason why a person with, say cerebral palsy may be unemployed or lonely or in poor housing may have nothing to do with her cerebral palsy but rather society’s response to it. This has profound consequences. Whereas the responses to the traditional perspective of disability – which conflates a person’s impairment with society’s response to it (often called the “medical” or “charity” model) – is prevention, repair or rehabilitation, the response to the social model is civil rights. Of course, nuanced understanding will include medical interventions but the critical point is to understand oppression.

In many ways, the disability movement has been a huge success. There has been a palpable shift in attitudes, some legal rights and greater inclusion but significant struggles clearly remain. And many would argue that the current period has seen reverses, particularly with the impact of austerity on disabled peoples’ lives. Critically, the introduction of anti-discrimination legislation – first in the Disability Discrimination Act 1995, now contained in the Equality Act 2010 – was a seminal moment. That legislation affords protection to disabled people against direct, indirect and disability-related discrimination, harassment and failures to make reasonable adjustments. It also requires public bodies to proactively address areas of under-representation and disadvantage in all that they do.

It’s fair to say that current legislation does not go nearly as far as many activists would like and from my perspective, is limited in its ambition. Nevertheless, it is a great improvement on the pitiable attitudes embedded in legislative arrangements that prevailed before.

Disability in science

Of course, disability is an heterogenous identity – there are many types of impairment and many different disabling experiences. Some are born with impairment and many, like Hawking, acquire it. Not everyone is the same! So how do we attain and understand a rich picture of impairment and disability in all of its differences and nuances, particularly in science.

In my view, data is key. We cannot understand the particularities of exclusion and disadvantage without it! For example, data tells us that disabled students and academics are under-represented in STEM disciplines as against non-STEM (arts, humanities, social sciences, business and law). But in addition, we also need to hear the voices of disabled people, with all types of impairment, directly. This is particularly important as historically, the voices of disabled people were ignored. It is critical that, to cite a mantra from the disability movement, that there is “nothing about us without us”!

In terms of next steps, we now know that it is insufficient merely to tackle the most gross of oppressive and egregious behaviours. Nor indeed is legal compliance sufficient (although it is essential). The work of Daniel Kahneman and others have illustrated how we can unconsciously or implicitly “other” those who are different, to their (and fundamentally our) disadvantage and there are numerous programmes and initiatives to address this. But in my view, relationships are key. We get to build connections with people who are different from us and learn – not to “use” anyone and certainly not to instrumentalize relationships but for all our benefit.

David Ruebain

About the Author

David Ruebain is currently Chief Executive of the Conservatoire for Dance and Drama. Prior to that he was Chief Executive of Equality Challenge Unit, a policy and research agency funded to advance equality & diversity in universities in the UK. Before that, he was a practising solicitor for 21 years; latterly as Director of Legal Policy at the Equality and Human Rights Commission of Great Britain.

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