Monday 14 November 2017 is World Diabetes Day. Shape's Georgia Macqueen Black, who works on our NDACA (National Disability Arts Collection and Archive) project and has Type 1 Diabetes, gives us some insight into what it's like to have an invisible disability, what NDACA has to teach us, and why it's so important for workplaces to understand and respect their employees' access requirements...

What is Type 1 Diabetes? What would you like to highlight about it?

Type 1 Diabetes is an autoimmune condition that stops the pancreas from producing insulin. Insulin regulates how sugar and fats are stored in the body, taking sugar from the blood so it can be used as energy by the body’s cells. People are usually diagnosed in childhood or as a teenager. The cause of Type 1 Diabetes is unknown and unfortunately no cure has been discovered, so I have to manage the condition for the rest of my life.

Type 1 Diabetes is classified as an invisible disability. So, although it is a chronic illness that impacts my life in serious ways, it does not show obvious outward signs. All the self-maintenance I have to do as a Type 1 Diabetic, such as regularly pricking my finger to test my blood, injecting myself with insulin, counting the carbohydrates in every meal and suffering from the symptoms of having too much or too little sugar in my blood – I feel as though I carry the emotional weight of these ‘tasks’ in private. The mechanical parts of Type 1 Diabetes, blood tests and insulin injections, are only the surface layer of what I have to manage. Someone may see me inject before I eat, but then there is the isolating exhaustion that I take with me afterwards, and with a chronic condition, that feeling never goes away. There will always be another injection.

The point I am trying to make is – if you have an invisible chronic impairment, one that no one else can see but you have to control, this can generate a disconnection between yourself and other people. As if you are the only one who understands the day-to-day lived experience of Type 1 Diabetes, the exhaustion sewn into you before you get into bed at night. This hidden struggle is why I think it’s important to talk about the condition in more depth. I want World Diabetes Day to create awareness of what cannot be seen, so that people with Type 1 Diabetes feel more at ease when talking about their needs and the support they require to fully take care of themselves.

Of course I feel supported and listened to whenever I talk to people with the same condition, or friends and family who care about my wellbeing, but there is still the underlying feeling that this invisible disability is mine to carry, on my own.

Can you tell us about your role working on NDACA, the National Disability Arts Collection and Archive, which Shape delivers?

NDACA is a Heritage Lottery Fund project that will tell the story of the Disability Arts Movement. The Disability Arts Movement started to take shape in the late 1970s, when groups of disabled people in the UK took action against the sustained discrimination they experienced because of societal barriers. They campaigned according to the Social Model of Disability, which frames disability as a social construct created by barriers which can be eliminated; individuals should not be ‘blamed’ for their impairment because it is up to society to plan and organise itself in a way that includes disabled people.

NDACA tells the heritage story of the disabled people who took their campaign to the streets, chaining themselves to buses and trains to demand full access to public transport.

It was up to disabled people to explain the hows and whys of equality, because no one was listening to their struggle. The campaigning became an arts movement because so many of its leaders were creatives or connected to the art world in some way – the NDACA collection contains remarkable pieces created by these people: paintings, sculpture, photography, posters and photographs of performances. I think every item in the archive is remarkable as they are rooted in a brave and inspiring fight for equality, one which has made an impact on my perception of Type 1 Diabetes.

I started working on NDACA as a volunteer in September 2015, after I graduated from university. I organised the Launch Event at the House of Lords, and my volunteer journey allowed me to progress into the role of NDACA’s Marketing and Touring Officer. I have to plan a series of further launch events when we go live in April 2018, as well as market NDACA to the general public, in the press and through social media.

What has been your experience of working at a disability-led arts organisation?

I have only positive things to say about working on NDACA and being an employee at Shape Arts. This is my first job since leaving university, and Shape’s holistic approach to disability and employment has completely altered my expectations of how Type 1 Diabetes should be treated by employers. Shape takes the time to address the individual needs of people with impairments, enabling them to perform at their best and creating a general atmosphere of openness and understanding. Being open at work feels liberating and enhances the work I do – I no longer feel awkward or ashamed about asking for a time out because of a high blood sugar level.

High blood sugar level brings fatigue, headaches and a haziness which makes it impossible to work effectively. Before, I was worried that my working life would be an environment where I had to hide my symptoms from colleagues, because Type 1 Diabetes would never seem serious enough to deserve workplace adjustments. That to the person facing me at the opposite desk, my erratic sugar levels would be interpreted as tiredness, when inside I am feeling terrible and suffering in silence. Obviously people aren’t to know what a high blood sugar level feels like unless you tell them, but at Shape, because of its holistic approach to disability, I don’t fall into the hole of being afraid to tell people that I’m unwell.       

Do you think the ethos of Shape Arts and messages of NDACA have permanently influenced the way you manage your condition at work?     

I know that I will always make the effort to explain the hows and whys of Type 1 Diabetes to future employers. Every workplace should be as disability confident as Shape. I have also been influenced by the disabled activists of NDACA: they were unafraid to call out societal discrimination and demanded rights, not charity, in the campaign slogan to ‘Piss on Pity’. In contrast to a lot of NDACA’s activists, Type 1 Diabetes does not impact how I move through the world. However, the key political message to be loud and fight has encouraged me in my own lived experience of impairment. I want to be open about the endless self-maintenance of my condition, on World Diabetes Day and every day afterwards! Expressing the invisible in words is not an easy task, but it is an important one, and I hope this article can generate some positive awareness for anyone else who is dealing with Type 1 Diabetes.

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We offer services for arts organisations and venues looking to become more accessible, including access audits and disabiliy equality training, available both within the UK and internationally. Find out more at www.shapearts.org.uk/Pages/News/Category/services

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