How Should We Write and Talk about the History of Disability?

What is this advice about?

This advice is for heritage organisations who want to produce interpretation, research, or other publications on the history of disabled people or the different heritage and cultures of disabled, d/Deaf or neurodivergent people. It gives a background into some definitions of disabled heritage, language guidance, and how to work authentically with disabled, d/Deaf and neurodivergent people.

Disability history is more than a medical history of mobility aids or clinical approaches. This advice showcases ways to approach this rich and diverse heritage, working with and representing the experiences and culture of disabled people.

What are the key points?

What is your purpose or goal in writing about disability heritage?

Before you begin, having a clear purpose for your writing is good practice. Who are you looking to write about, and why? What sources are you using (and what might their biases be)? Who is your intended audience, and what do you want them to gain from reading your piece?

Asking yourself questions like these will ensure you have thought through the ethical considerations of writing about disabled heritage and history. You should approach the writing through the lens of the "nothing about us without us" motto, a core tenet of the disability rights movement.

You could use the following points as a framework for your planning:

• Are you using the right language and terms?
• Have you approached disabled, d/Deaf, or neurodivergent people to ensure their voice is represented?
• What resources can you draw upon, and what might be the challenges associated with them?

What are the first steps when writing about the history and heritage of disabled, d/Deaf and neurodivergent people?

Firstly, it is important to understand that 'disability' is not a monolith, and there is a wide diversity of people who fall under this label. Many people fall under this umbrella but do not identify with the term 'disabled' or find it a challenging or upsetting label. Work with disabled, d/Deaf, or neurodivergent people when developing your work to develop an understanding of how to approach this issue and pitch your piece accordingly.

Understand the Social Model of Disability and make this the basis of your work. You can find more information in our guide, 'What is the Social Model of Disability and How Should it Inform our Work as a Heritage Organisation?'

The more specific the language that you use when talking about disabled people, the better. For example, if you are writing some interpretation about your town's Deaf Institute, work with local d/Deaf groups on the best language to use, and add acknowledgements of changes over time if you reference outdated or historic terms. You can find out more about good language guidance below.

Understand some of the main cultural groups and their unique features, and write about them as a cultural group with interesting and diverse histories rather than people sharing a medical history or diagnosis.

What is disability culture?

Disability culture is a challenging umbrella term as it covers a wide range of people with different life experiences who face very different challenges and barriers to heritage engagement.

There are also differences in the reception and platforming of different types of disability culture by wider society. For example, people with learning disabilities are often patronised or face additional barriers in showcasing or sharing their voices.

The Social Model of Disability is fundamental to disability culture, as it is built on the fact that people are disabled by society's lack of accessibility and awareness of disability, as well as attitudes towards it. Disability culture brings people together who have been disabled by these issues and acts as a way to share experiences both with other disabled people and non-disabled people.

Disability culture features (but is not limited to) the different ways that disabled people:

• Live in and experience the world in work, daily life, leisure, personal relationships and more
• Feel solidarity and connection to other disabled people
• Feel connected to past generations of disabled people
• Fight for disability rights

It encompasses the Disability Arts movement, as well as a thriving DIY arts scene, and many Disabled People's Organisations (DPOs) facilitate the promotion, production, and archiving of disability culture. It also encompasses activism on disability, challenging people to improve their understanding and awareness of disability culture and what this means for the lives of disabled people.

Heritage and history are also considerable features of disability culture. Research into the history of disability can highlight the experiences of disabled individuals and communities in the past, highlight the ways they have faced discrimination or abuse, and celebrate their achievements and stories that have been ignored or deliberately hidden.

What is Deaf culture?

Deaf culture represents a very rich variety of arts, shared history, shared language, and even specific jokes and humour. In England, this usually means people who have British Sign Language (BSL) as their first or primary language. The culture goes beyond this shared language, and it encompasses unique drama and theatrical performances, storytelling, poetry, cinema and visual arts.

Deaf culture is made up of people who experience and perceive the world in a different way to the non-Deaf majority, and this difference in lived experience forms a powerful shared identity and belonging.

The British Deaf Association define people within Deaf culture as "a group of people who share a perception of the world through an emphasis on visual and kinaesthetic input", and state that it is usually the case that people born deaf or become deaf in early childhood who identify themselves as part of Deaf culture. It is important to consider that not all d/Deaf people consider themselves to be part of Deaf culture.

Some distinct elements of Deaf culture include:

• Sign language, usually BSL in England
• Placing a high value on eye contact and visuals, both during conversations and in general day-to-day life
• A strong connection to other d/Deaf people and a sense of solidarity and shared experience
• Celebrating the achievements of d/Deaf people through time and in particular their part in the disability and d/Deaf rights movements of the 1960s to 1990s

What is the Neurodiversity Movement?

The Neurodiversity Movement is an activist movement that campaigns for rights for neurodivergent people and for greater societal understanding and acceptance, leading to equity and inclusion. It is a grassroots movement and does not have a central organisation. Just as with disability culture, there is not a single definition or experience of neurodiversity that defines the Movement.

The Neurodiversity Movement is underpinned by the Neurodiversity Paradigm, which states that neurodiversity is a part of natural and essential human diversity and should not be approached by the medical profession as something to be 'cured' but understood and accepted by society to enable equity of access. The paradigm places value on the culture of neurodivergent people, emphasising the intrinsic value of their way of experiencing the world and expressing their opinions, feelings, and thoughts about these experiences. Just as with disabled and d/Deaf people, it is impossible to genuinely represent and write about these experiences without working with neurodivergent people directly.

When looking to write about neurodivergent culture and heritage, it is vital to work with organisations led by neurodivergent people. The community rejects many organisations as they still promote the idea of 'curing' neurodivergence, especially autism. You can find more detailed information on working in an informed, 'neurodiversity-affirmative' way in this article from the British Psychological Society.

How do we use the right language when talking about disability heritage and culture?

Disability is not a monolith. Throughout this guidance, we have used the phrase 'disabled, d/Deaf, and neurodivergent', but this is still a blunt way to reflect a broad diversity of experiences and identities. To get the language right, the important thing to do is ask.

Once you have identified the purpose and content of your piece, start researching the best language. This may be found in resources and information on charities and organisations led by and representing those you are writing about, but it is important to remember there are regional variations, so look for groups that represent people in the area you are working in or writing about.

Also, ask for guidance and help before you start – it's much more effective and respectful than asking people to edit or make corrections to finished work.

Some key language points:

• Be specific. Reflect who you are working with and writing about by using specific terms and not relying on generic language
• Nuance in terms matters. For example, we have used the term d/Deaf in this advice, as this reflects different individuals and communities who fall under the umbrella of deafness – including those who identify with Deaf culture, people with different degrees of hearing loss, and those who have been deafened
• Centre people in your terms. "Wheelchair user" focuses actively on the individual, whereas outdated terms such as "wheelchair-bound" focus on their disability

What are some key things to avoid?

Medicalised histories of disabled people can be othering, upsetting, or actively harmful to disabled, d/Deaf or neurodivergent people. Many exhibitions or publications on disabled people have focused on the medical diagnoses and medical discourses around them and have been under the Medical Model of Disability, making an individual and their diagnosis the focus rather than acknowledging the barriers put in place by society.

Trauma and difficulty are present in the lives and experiences of many disabled people. They are also present in many disability histories, as is the overcoming or adaptation to them. However, it is good practice to focus more holistically on the whole lives of disabled people. As stated in the Leicester Museum guidance on interpretation of disability history, the focus should be on breaking down stereotypes of 'overcoming adversity' as the only facet of disability that is noteworthy. Instead, look at the full and rich lives of disabled people in totality to explore their histories.

You may see that activist or academic research circles using terms like 'crip' or 'crip theory'. These are insider terms within the disabled community and should not be used outside of this context, especially by organisations not led by disabled people. It is not universal, and many feel uncomfortable with reclaiming what is traditionally a term of abuse or dismissal for disabled people.

Further reading

• The British Deaf Association’s explanation of Deaf culture
• The UK Disability History and Heritage Hub is a thriving research community for disabled academics, curators, artists and anyone researching disability history and heritage
• Everywhere and Nowhere, guidance from the University of Leicester’s Research Centre for Museums and Galleries and the National Trust, in partnership with disabled people and disability history experts, on interpreting disability history
• British Council page on Disability Arts