Fresh Perspectives with Emily

This week I asked Emily some questions about science, her research and life dealing with a disability. Emily lives with a genetic disease called Ehlers-Danlos Syndrome (EDS), an untreatable connective tissue disorder that also affects the autonomic nervous system, and causes a range of symptoms. Emily is such an all-rounder, being extremely academic and also super creative so I've been really excited to share this one - she is an incredibly interesting person, and her personality really shines through this interview. It's a bit longer than usual, but really, really worth the read. 

What made you pursue research/academia, and this topic specifically?

I chose to study Genetics at an undergraduate level in part to answer my own questions about my health and body. Once I was satisfied with my level of understanding about my own body, I turned to trying to solve a much larger problem: food security and food access in the 21st century.

As climate change increases the frequency of extreme weather events, our freshwater supply dwindles. Farmers are turning to increasingly salty water to nourish their crops, which causes our staple foods a lot of stress when growing. High salt reduces the rate of photosynthesis, therefore reducing the amount of useable food we get from plants. I study what genetic networks in plant roots are responsible for helping plants cope with high salt, and aim to use this new information to help scientists improve our plant species, which will ultimately keep the world fed. Why help myself if I can help the world, right?

Why did you choose to share your research via blogging and social media?

I am a firm advocate of open science, and believe it should be freely accessible to anyone, from someone with no scientific background through to a regius professor. Science is mostly funded by taxpayers, so we owe it to our funders to show what we’re actually doing, achieving, and how our research will impact and improve their daily lives.

It also holds me accountable to my own research, I tend to go through lulls in my research where I lack motivation, so find the encouragement and support of other researchers, scientists, and followers, especially helpful. My followers provide a lot of support, whether it’s simple questions about how stuff works, through to working out a really complex problem together. It’s incredibly rewarding.

You talk openly about struggling with your physical and mental health, which is extremely brave, and empowering for other scientists. Is this something you set out to raise awareness for with your blog, or did this happen more organically? 

So I tend not to ever describe myself as brave, I see bravery more as a choice to do something difficult or heroic. My disability isn’t a choice for me, I just navigate life the way I know how. As I began to see myself as a scientist, I realised I had absolutely no role models higher up in academia. Disability is often and wrongfully viewed as a weakness, so if there are any disabled academics out there, they might well be ‘hiding their identity’ so to speak.

I am not one to shy away from being controversial or open about ‘taboo’ topics, so I decided to become the role model I needed when I was an undergraduate student. As my community of followers grew, I started to receive a lot of messages from disabled science students looking for support and advice about navigating the sometimes outright ableist academic world around them, so decided to naturally follow a ‘disability liberation’ approach to my outreach.

I aim for my outreach and communication to be approachable, accessible, critical of the systems around us, and ultimately, I’d like to help dismantle the many systemic barriers that so many of us face on a daily basis. I have a section of my blog called ‘intersections’, where eventually I’d like to build a community space for any scientist that’s ever experienced homophobia, transphobia, ableism, racism, and sexism.

In light of this, how have you found your PhD journey? And, what advice would you give to a disabled student/anyone struggling with their health, wanting to embark on a PhD?

I’d say all PhD students will struggle with something during their studies. Whether it’s self-sabotage, self-doubt, imposter syndrome, their mental or physical health, we’ve all experienced something. My journey hasn’t been linear, it’s been marked with bouts of acute mental health issues, stretches where I’ve not been able to pipette as my fingers are dislocating, punctuated with runs of time where I can get on just fine. I’m very lucky to have a supporting and kind supervisor, who tends to let me get on in my own, non-typical way. I go through times where I work 12 hour days, times where I can only manage 6, times where I do bioinformatics from my bed. It’s taken me a long time to get to a point where I’m not chastising myself for being ‘different’ in how I work.

My first piece of advice is to be aware of what services your chosen institution can offer you. Do they have a disabled students network? A disability-equality working group? Do they provide students with a disability advisor? Do they have good counselling services that are easy to access? Can you find a supervisor with lots of experience in working with students with different needs? Once you’ve asked all these questions of your chosen institution, you can begin to assess if it’s the right place for you.

My second piece of advice is to evidence everything. Health is not predictable and if you get a severe flare, which means taking time off work, you need to get medical evidence. Meticulously and chronologically document your time away from the lab. That way, if you need to apply for any extensions, you’ve already done all the hard work and it should be relatively stress free.

Emily's beautiful photography

You have a pretty impressive and varied CV (yes, I checked out the about section on your blog…), where you’ve been heavily involved in academia, science writing, and being a student representative. What do you think you’d like to pursue after your PhD?

Thank you! I’m a chronic do-er-of-everything, and my inability to do just one thing is both a blessing, and a curse. I have always been interested in the arts and writing, and very nearly didn’t pursue science at all, so have been pleasantly surprised with how much creative scientific writing I’ve been able to undertake throughout my postgraduate studies. I always have at least five projects on the go (right now I’m redesigning my blog, applying for two personal grants, creating an ‘Impact in 60 Seconds video’, and preparing for the Three Minute Thesis Competition).

Emily's beautiful photography

I’m also a photographer in my spare time, and am preparing for my second exhibition. This can get overwhelming sometimes, but I enjoy the pressure and strive to always create and do more. My health is a bit of a ticking-time-bomb, so I try and do as much as I can, all of the time, just in case I can’t do it anymore.

I remember when I was about ten years old, my mum told me I could ‘be and do absolutely anything I wanted to’. By the time I was 12, my dad told me I could be ‘rich beyond my wildest dreams if I didn’t care so much,’. Both pieces of advice have followed me through life, I’ve always chosen a path where I can help, teach, encourage other people, and that’s exactly what I hope to do post-PhD.
In an ideal world, I’d love to go on to work in TV and radio, teaching people about science and inspiring young scientists to go on and change their worlds. If that plan doesn’t work, I’ll be content as an over-qualified gardener.

--

Thank you so much Emily for sharing your answers and advice on my blog! Reflecting on this interview, I think so many people will be able to relate to your perfectly articulated answers and nuggets of wisdom. Please do check out Emily's blog 'The Radical Botanical' and follow her on instagram @theradicalbotanical.