Finding the Place of the Invisible - with Angela Stienne, museum historian and founder of the Lyme Museum.

Angela Stienne is a writer, museum historian and researcher in ethics and communication in museums. Her specialty is the study of the representation of bodies in museums and in particular human remains in European museums. An Egyptologist by training, Angela Stienne has worked for the last 10 years on the study and presentation of Egyptian mummies in museums, including the ethics of representation. On this subject, Angela wrote a book “ Mummified, the stories behind Egyptian mummies in museums ” which is a mix of personal experience from her work of historical narratives and contemporary questions about human remains . She has also created an online platform called ' Mummy Stories ' where the public is invited to share their opinions and personal stories about their reactions to Egyptian mummies in museums. Alongside her work on the representation of bodies in museums, and inspired by her personal story, she created the Lyme Museum digital museum , a virtual space to encourage reflection on invisible illnesses. Today, she consults for organizations that want to improve their approach to employees or visitors living with these diseases. We meet her to learn more about best practices for being more inclusive for people living with these invisible illnesses.

Can you tell us about your Lyme Museum project ? What is it about and why did you create it?

After my PhD I did a postdoc at the Science Museum in London in the department of medicine which was a fairly new department for me because I had always worked in archaeology or ethnography before. But it turns out that they had quite a large collection of human remains and so I worked for a year in that department on human remains, including Egyptian mummies, but in a completely different environment, thinking about the history of medicine. They were creating a gallery, which is now the largest gallery of medicine on display in the world. And so I found myself walking around these galleries of medicine and wondering about the stories that were being represented and also what was not being represented. While my relationship with the museum world has always been professional, it became much more personal at that point: living with an invisible illness myself * , I wondered how to represent these illnesses in museums.

I started asking myself the question 'are these diseases really invisible or is it society that makes them invisible?'

And because my professional interest has always been in objects, materiality, representation, I really transferred my way of thinking about museums to another questioning which is the experience of invisible illnesses.

That's how I started the Lyme Museum , I wanted to create a museum where people could think about what invisible illnesses are, have personal stories, feedback. When you think about it, museums have always had this pretty fundamental role of representing certain people and not others and defining what's important and what's not, and that's what gave birth to the Lyme Museum .

On this website , there are virtual exhibitions that change regularly as well as a resource center that links to articles that cover all topics related to invisible illnesses. I myself have written for some publications including ICOM , which is the International Council of Museums , the largest museum organization in the world, and the American Lyme association, Global Lyme Alliance .

Recently, with the London School of Economics , we collaborated to communicate with groups of children about lockdown and illness and how to look after yourself during lockdown. The Lyme Museum was part of this project, the children were invited to make their own flat lay ** of objects they were using to keep themselves busy and healthy mentally and physically during lockdowns.

“What you see is not always what we feel inside. The hardest part for me is getting people to understand that a lived experience is valid even if you can’t see it. At the end of the day, you shouldn’t have to wait until you see needles to believe we’re telling the truth.”

In France, 80% of declared disabilities are invisible, how can we talk about invisible illnesses at work?

First, I think it is essential to be open-minded about understanding what invisible illnesses are. I don't think there is one resource on an illness that is THE resource. There are sites that I know that are very good and that are often in English, but it is especially the fact of taking the first step, by questioning yourself on this subject, that is important.

When I work with the online community for the Lyme Museum , we exchange a lot and find support groups, discussion groups and sharing with people who are sick and that's how we help each other. But I notice that as long as it doesn't concern people, they won't find out. However, the disease can happen overnight, and especially can affect people around us, without us expecting it, so it's important to find out, to be aware of what an invisible disease can represent.

There is also another big challenge to take into account, which is to realize that within the same disease, there are enormous disparities in the way of experiencing it. People will not react in the same way, and the disease evolves, the symptoms are very changeable depending on the days, months, years.

So, to support your employees or collaborators who live with invisible illnesses, the best and first resource is to go online to read testimonials. This is also why I created the Lyme Museum . When I do consulting in organizations to help them better welcome people living with invisible disabilities, it is really the lived experience that guides our principles. This is part of my practice, my fundamental approaches, I am above all a researcher and the best way to dig into a subject is to meet those who have experienced it.

It's a real process. You have to go online and search, you have to read, you have to sort through things a bit, but it's an effort that's ultimately not comparable to what people who live with the disease have to go through every day. My Diversability and Global Lyme Alliance are two sites that help open eyes to invisible diseases.

What are the points that can guide employers, but also help employees to be recognized?

First of all, you have to understand that I am 100% aware that this is a complex subject and that at the moment, there is no miracle solution. But in France, there is still assistance that allows disabilities to be recognized. Then, from a legal point of view, it allows you to discuss with your employer with a clear point of reference. For example, you can apply for the mobility inclusion card , which is very useful, which is not necessarily just for work but which can be useful because it allows you to have a seat on transport. I have had it for 4 years and it has absolutely saved my daily life. And then there is the recognition of the status of disabled worker. This often allows companies to fill their quotas, so it is sometimes an opportunity for the sick, but you still have to be sure that the employers' intentions are the right ones. But it is a fairly heavy administrative process. The file is 19 pages long, you have to go to the doctor, fill out a lot of documents and then there is a 4 month wait to get the results.

But it's very important to do it, because recognition is something that people with invisible illnesses or disabilities lack a lot.

Then, with regard to the company, there are two major challenges to note for employees, and these challenges have been reinforced during the pandemic. The first is how to talk to your employer about your situation? From a legal point of view, of course, the employer must be receptive. But the reality is that all people who have invisible illnesses have had, at one time or another, traumatic experiences with people who refused to believe in their illness. I would like to share an experience that I had in July 2020. At that time, I received a phone call from social services because I was unable to go to an appointment in person, it should be noted that at that time, the epidemic was still very strong and that because of my illness, I am considered at risk. The person on the phone told me that the epidemic was already over (in July 2020!), but also that ' I couldn't stay on my couch doing nothing for the rest of my life'. I got a PhD at 26, which I wrote on my couch, because I wasn't able to get up! But this idea that we spend our days on our couch doing nothing is really ingrained in our thoughts.

Even if it's hard to talk about it, communicate with your employer about this topic. This will open up conversations. Because there are many employers who still think that having people with disabilities in their company is a hindrance. Although there are financial benefits, aid, there are still many companies that choose to pay fines rather than hire these people.

I think we really don't talk enough about all the benefits and qualities that people with invisible illnesses or disabilities can bring to companies. They have this sense of community, incredible creativity, an ability to adapt in any situation, to solve problems, and a great form of flexibility. With the epidemic, we all found solutions to continue working. But for people who live with invisible illnesses, all these methods of remote working, online conferences, etc. They have been using them for a long time!

As you have a dual experience between England and France, do you think that we talk enough about invisible diseases in France? Are there still many battles to be fought?

I feel like in England there are a lot more conversations. But I studied in a museology department at the School of Museum Studies at the University of Leicester that specialises in social justice, and it was the first department to talk about disability in museums, accessibility, representation, homosexuality, so these institutions had already looked at this subject a lot. What really struck me was not so much the difference between France and England, but rather the similarities in the treatment of sick people during the epidemic.

What I found most violent and most difficult during this period was not only the health risk and the isolation, but the conversations I heard on social networks, in the street, in restaurants. I heard people say publicly that sick people should just stay home so that non-sick people can go out. The fact that people are speaking out like that, publicly, shows that there really is a huge lack of understanding.

This is also why companies need to take charge of the issue. We need to discuss inclusion, chronic illness, invisible illness, because this will help remove this mistrust, these prejudices, and combat this fear of the unknown.

In fact, these conversations are based on false assumptions. If all sick people stopped participating in society, there are so many of us that there wouldn't be many people left, and the world wouldn't turn around. On that note, there is a study done in England and the United States on the purchasing power of disabled and sick people and the money lost in the economy of those countries, due to lack of physical accessibility to retail outlets, which shows that companies have every interest in trying to reach and include these people in their activities. We can contribute to so many aspects of society, it is high time that companies come and tap into this immense resource of creativity and talent.

*Editor’s note: Angela has Lyme disease.

**Flat lay: technical term which describes an installation of objects staged flat, in museology.