Extra.Ordinary

Melina finds peace and happiness through beekeeping. She works with beekeeping experts at Sunnyside Rural Trust, which is a charity that offers training and work experience in a variety of rural activities. Beekeeping has helped Melina’s experience with neurodivergence: she has Asperger’s and OCD, and in cultivating her apian hobby, she reports a marked decrease in anxiety and huge increases in her social confidence!

Internal identity can be difficult as a disabled person. Confidence is often tangled in personal and societal expectations, feelings of indignity; being a burden; frustration; injustice; solitude; guilt. These are universal human experiences, not just known by the disabled community. But disability can be separated from ability and success. We are people with interests, skills, and talents.

Rhiannon spent her career running a successful advertising firm while her husband kept horses, which she loved. Rhiannon became disabled at 40 years old. She fell while horse riding, breaking her back and becoming instantly paralysed. She had to relearn everything except to speak, and had to find a new identity amongst this extreme lifestyle change. At times she felt undignified and alone, as everything in her life had changed, yet everything around her – friends, family – remained the same, they just saw and treated her differently.

“I went home and had to go out and be among the people I used to meet and be with, friends and acquaintances, whom I used to know how to interact with before the accident. But everything was different now. When I returned home I could hardly do anything, none of the things I used to…”

Rhiannon also believes that she has gained significant privilege from her position in society before she became disabled. As she was in charge of a business, she was offered support that may not have been accessible to someone from a lower-status background. Social services provided home help support but that was a disaster because their help was standardised and didn’t fit into her lifestyle. ‘Instead I needed someone who could do what needed to be done – and I was awarded that. I received a direct-payment contract that I could use to hire people to assist me.’ This direct-payment contract was largely due to Rhiannon knowing the leader of the local municipal council.

This photograph, dating to 1947, shows a district nurse attending to a patient in East Garston.

Cody grew up in a rural area, but has a complex relationship with whether or not it is their ‘home.’ It is where they grew up, and where their family still lives, but it has not been a place where they’ve felt unconditionally accepted. Cody’s sense of belonging was contingent on behaving in certain ways or for ‘passing’ as ‘normal’ when they were outside their wider family’s homes. Paid employment has not been viable for Cody, and they would be ineligible to receive benefits if they moved in with their partner.

Cody’s formal diagnosis of bipolar disorder brought intense feelings of relief as it has allowed them a way of justifying their situation. Pre-diagnosis, they would say “‘I don’t work’, y’know, which is like ‘ooh what a princess’ type of thing”, which was then qualified with “I’ve got bipolar disorder.”

The community around Cody has financially supported them with a fundraiser. Schools in the local area participated: children were driven to the coast, where they would pick small beach pebbles. They were placed in small boxes made by Cody and sold to raise money. Cody visited all of the schools to personally thank the children and allow them to ask any questions. After this, every child in the local community knew who Cody was. This project resolved some of the financial burdens, but perhaps more strikingly, it was also a social salve that resulted in an unprecedented amount of love, education, and acceptance.

George is Alvin’s brother. They both have Cohen Syndrome, which gives them global developmental delay. October is George’s favourite time of year as it heralds the start of hay and silage making, giving him more regular contact with the farm machinery that he is passionate about. Throughout the rest of the year, this real contact is augmented by collecting farm machinery catalogues. George can discuss the pros and cons of any make or model of tractor with unfailing accuracy.

George’s mother supported his interests with the purchase of a ride-on lawn mower and had the idea of setting up a lawn mowing business. They faced numerous barriers, especially those related to occupational health and safety, and eventually conceded defeat.

One organisation with the specific role of assisting disabled people into work assessed George as unemployable. According to disability charity Scope, disabled people are more than twice as likely to be unemployed than non-disabled people. This is emphasised in rural areas, where there are already likely to be fewer employment opportunities.

Alvin has Cohen Syndrome, like his brother George, which gives them both global developmental delay. Alvin’s interests are far more centered on urban life than George. He loves to dress up to get on a bus and visit the city. He is extremely social, which elicits a great enthusiasm for event planning. For any celebration, Alvin is sure to organise a get-together.

George and Alvin’s rural-based peers scattered after school. Like everyone else, the brothers found themselves having to adjust their ways of being a part of their local community. George’s identity felt more secure as he focused on his agricultural passions, while Alvin found it harder to pursue his social interests in their rural home town.

Their mother also sought to enrol George and Alvin in the Work and Community Skills course at their local polytechnic, only to find that it could find no place for the learning styles and high energy of two men with Cohen syndrome. Because this course was classed as a pre-employment course, Alvin was not entitled to the level of access arrangements that he had previously received at school. This support would indicate to funders that he would not be employable – despite the social and performance-based success he had found at school.

Andrew was born with muscular dystrophy into a dairy farming family. He has strong familial support, a flexible educational environment, and a comprehensive farming know-how. Many of these factors have been dependent on the financial status and willingness of his support network to assist him, which is therefore precarious and subject to change.

Andrew speaks proudly of his self-reliance and solution oriented nature of his personal farming identity. He rejects the use of paid assistants, preferring to accept the help of family. However, he views assistance as an affront to his dignity rather than as a resource.

Technological advancement and the automation of the dairy industry allow Andrew to perform nearly every aspect of dairy farming, but they are not a specific adaptation to disability, they are becoming mainstream across many dairy farms. Here, we have an example of such automation: a key which links each cow to its own feed system, a movement tracker to monitor activity and health, and an ear tag which signals the ID of a cow to antennae.

These mobility aids have not been selected to represent any one person: they are instead here to allow the reader to think about their own identity, ability, and parts of themselves that may be concealed to the rest of the world. 

Sticks are deeply individual objects; they can be and are personalised. They can provide physical support to a person, but they can also provide support by indicating to the rest of the world that the user may need tolerance from the public, such as allowing them to sit down on the tube. Some of these have historically been used as markers of high status or as tools when farming. Some have been designed with the intention of telling a story. What kind of support is central to your life?

“This exhibition has been funded by Curating for Change, which is actively addressing the significant lack of representation of disabled employees in the museums sector. To honour this, I wanted to curate a collection that amplifies disabled voices present in The MERL collections. My main difficulty has been avoiding tokenism: I want disability to be thematically at the forefront, but I’m acutely aware that we are all so much more than our conditions. I’ve accepted that this one collection could never cover everything. I am proud to be a small contributor to our representation – one voice is all I have, but that is all that is needed to start a conversation.”