Chronically Katie: my experience as a disabled Trainee Curator
I’m Katie Sawyer and I’m one of two Trainee Curators for 2020 at Bodmin Keep, Cornwall’s Army Museum. I also have Myalgic encephalomyelitis/Chronic Fatigue Syndrome, which is a long term neurological illness with no known cause or cure, that severely impacts energy along with several other symptoms. My aim with this blog is to highlight experiences from my traineeship and show how small adjustments in the workplace can make a massive difference for employees with disabilities.
Applying for the job
When I was offered an interview at Bodmin Keep I was given the option of a phone or video call, instead of travelling all the way to Cornwall to interview in person. This would have been hours each way by train for me! Although this option is now fairly standard because of Covid-19, in 2019 it was a big deal, as it meant I didn’t have to exhaust myself for an interview.
Applying for jobs when disabled can be very difficult as you become an amateur detective trying to decide if an organisation really wants to employ disabled people, or if they’re making empty statements. If an organisation claims that ‘disabled people are underrepresented in our workforce and we are especially interested in applications from this demographic’, investigate what they’ve actually done. For example you could check if they are Disability Confident, a work scheme with specific commitments. Can you find their workforce numbers online or have they hired anyone who is disabled? Has someone at the organisation written something online (like this blog!) so you know that they will make reasonable adjustments? This research can be exhausting but has saved me wasting time applying for non-accessible organisations in the past.
When to disclose?
Disclosure, which just means telling your employer of your disability, is a personal choice and you do not have to inform them. However, protections and assistance in the Equality Act 2010 are often dependent on the employer knowing, as they are often not legally obligated to help if they don’t know you are disabled.
Personally, I tend to disclose after the job offer, or sometimes during the interview, as if the employer starts to look worried you can explain exactly what your disability means along with adjustments they can easily make. You can also make sure they are not discriminating, as if they offer the job and then retract it when you disclose you are disabled, they might be breaking the Equality Act. Although this has not happened to me, I have experienced other discrimination which has made me wary of early disclosure. If you have specific access needs for your interview you may have to disclose early. These could be anything from regular breaks, a sign language interpreter or physical interventions such as ramps or lifts. Bodmin Keep has no lift, so is inaccessible to wheelchair users for example. Disability is a spectrum, and although they were able to make changes for me to work there, everyone’s access needs will be different.
Starting the job
As this was my first full time position since being diagnosed, I was worried that I would struggle. Thankfully Mary Godwin (Director at Bodmin Keep) and Verity Anthony (my line manager) were very supportive, and able to use their own knowledge of ME/CFS to understand my condition and adjustments needed.
I researched what adjustments other employees with ME/CFS had asked for, as I didn’t even know what I might need. This included things like: changing my working days to have a rest day mid-week, working at home on digital projects, adjusting my hours to start and end later, wearing headphones or sunglasses if needed (noise and light sensitivity symptoms can be really bad), given as much notice as possible if workload changes and review meetings. I emailed Mary with these suggestions and she simply replied, ‘yes all fine’. It was such a relief to know that I could ask for what I needed and be supported.
The absolute best adjustment by far was my nap spot. Verity set me up in the collections store attic in a big armchair with pillows and a duvet. I had a 20 minute nap every lunchtime, which might sound like a small thing, but it gave me enough energy to work full time. It was also a physical sign that Bodmin Keep were committed to making me feel welcome.
As part of the traineeship, we visited local museums in Cornwall as well as national ones in London. This was very tiring and there are adjustments that I learnt to ask for, such as a quiet room in each museum for me to rest in. National museums especially often have one for prayer or breastfeeding, however their websites often had very poor access information. The Natural History Museum for instance have a contemplation room, which I could not easily find on their map. Luckily, I was able to ask a helpful member of staff and used it to take breaks.
I would also recommend disclosing as early as possible to Claire English, the training co-ordinator. She has been really receptive to my access needs, especially as we’ve both gained a greater understanding of what that means practically. Again, if you are comfortable disclosing, I would ask Claire to advise the museum staff you will meet, or contact them yourself in advance. This way if you need to leave talks early, they won’t be concerned, and you’ll feel comfortable taking whatever breaks you need.
As we all went online due to Covid-19, I continued to set boundaries for myself, for instance a five minute break for every hour on Zoom. Zoom fatigue plus chronic fatigue is the worst combination and I would not recommend it. This usually benefits others on the call too, as no one wants be to on a video call for hours without a tea or toilet break. Also, the ability to have my video and audio off is a hugely helpful , as I can relax my brain and body and just focus on listening.
I can’t guarantee that the Trainee Curator programme will be accessible for every disability, but I hope that my experience has shown what adjustments can be made. As a disabled museum professional, you are a valued member of the workforce, with important skills and viewpoints that will make museums better.
Other resources that might be useful
Pippa Stacey lifeofpippa.co.uk – writer with ME/CFS with articles about working and studying with chronic illness
Museums Disability Collaborative Network – @museumDCN or www.musedcn.org.uk
@AXSChat – weekly social media chats on inclusion
Scope – www.scope.org.uk— disability equality charity
ME Association – extensive ME/CFS resources
Astriid – www.astriid.org.uk/s/ – charity that helps people with long term conditions find work
Curating for Change – historyof.place/curating-for-change-deaf-and-disabled-people-leading-in-museums/ – new training programme for disabled museum professionals
Disability Rights UK – www.disabilityrightsuk.org – charity that campaigns for disabled equality