Collections need to reflect lives of neurodiverse people

Regardless of collection, specialism, location or the building itself, one fundamental of the museum experience is  to allow visitors a means to relate personally to what is on display.  Our collections are a reflection of what  got us to where we are, what matters to  us now and our hopes – or maybe fears – or the future. 

That future is important. The public perception is of museums as custodians of the past. Contemporary collecting usually takes a back seat, save for exceptional events such as the Queen’s death and coronation of a new monarch. This perception, though, causes major problems for equity. 

My experience, and that of many of my colleagues, is that our collections do not reflect lived experiences equally. The lives and stories of disabled people seem particularly under-represented – in some cases, perhaps hidden through unconscious bias or deliberate stigma. 

During my curatorial traineeship at Colchester and Ipswich Museums, I discovered its collection had only two objects with any direct connection to autism and neurodiversity – both were related to the autistic community being given charity. 

To challenge this, I put on a display in Colchester Castle entitled Un/Masked that looked at the absence of neurodiversity  and autism in Colchester’s collection by presenting a selection of objects related to the diverse skills, bursting creativity and fundamental social value of neurodiverse people. Alongside Colchester Museum curator Ben Paites and the exhibitions team, I created a vibrant and challenging display, more akin to an art installation than a traditional museum display. It was bursting with art and artefacts reflecting the lives of neurodiverse people. 

The display was seen by more than 15,000 visitors, and I had a feedback on how affecting it was from neurodiverse people and those with neurodiverse friends or family members. 

The case was chock-full of artefacts that reflect the incredible lives of neurodiverse people: a scarf with a pattern designed by a neurodiverse artist; a badge with the logo of a neurodiverse-friendly performing-arts group; novels by my friend, who is an incredible author and is autistic; artworks by autistic or neurodiverse friends; and my neurodiverse neighbour’s book, Morris Minor. I was able to collect this amazing diversity of neurodiverse culture from my life, and I am not the most interesting neurodiverse person. So where is the rest  of it in our museum collections? 

Colleagues at other museums have told me their collections are just as lacking in representation of neurodiversity and autism. But surely it is there and we can just go looking for it? Yes and no. The first person recognised as having an autistic spectrum condition was US banker Donald Triplett  in 1943. With this date in mind, it would be wrong to scour past records, find people with lives, tales and idiosyncrasies that look “a bit like autism” and retrospectively diagnose them. We can recognise relatable aspects, but we cannot call it autism. 

The collections, then, are reliant on objects and stories collected since 1943 – and it will surprise only the most naive of people to find that almost no one collected objects relating to the lives of disabled people, unless a local “person of note” is seen to be being charitable. The entire social evolution of my neurotype, a thing as inalienable from me as my eye colour, is not there. Our past, therefore, is invisible. We are erased. 

It is a can that has been kicked down the road for too long. Contemporary collection practices must be more proactive to prevent this problem for future generations of curators. It shouldn’t just look at big events but should make collections more rounded and boost representation. We need to ensure that collections truly reflect society. 

Karl Mercer was a Curating for Change curatorial trainee