Welcome to 'Five minutes with...', our new blog series. Here, RARE Revolution Magazine's Joe interviews Linseigh Green about the lack of disability representation in the performing arts, the long-term outcomes of being a necrotising enterocolitis (NEC) survivor and her fight to reclaim her life from functional neurological disorder (FND).
Hey, Linseigh! Firstly, how are you feeling today?
Hi there! Fabulous now that I’m talking to you!
How would you describe yourself to someone who has never met you?
A stranger once observed, “You hide, yet you fight to emerge.” Which is pretty accurate. I’m a talkative introvert who feels deeply. I’m better at advocating for others than myself, which I’m working on. Despite all I’ve been through, I’m at a point where I’ve harnessed positive energy. I'm optimistically delusional. I do way too many things: Performer, writer, researcher, curator, producer, all the things!
"...NEC’s long-term outcomes are so underresearched, that even some of the top experts of the disease don’t realise they exist."
Briefly tell us about Necrotising Enterocolitis (NEC) and your experiences
NEC is a rare, often fatal neonatal disease in which part of the bowel “dies.” Part of my colon was removed to save my life. I had minor complications that were easy to brush off growing up…but then the hospitalisations began. And a string of severe episodes as a teenager in which I questioned whether I’d survive. It clearly wasn’t my time yet, because in the end, the issue would resolve itself and I’d go from needing emergency surgery to being sent home. I couldn’t find help to understand or contain these issues, because NEC’s long-term outcomes are so underresearched, that even some of the top experts of the disease don’t realise they exist. So, there are NEC survivors growing up in a paediatric intensive care unit (PICU) or dying at the age of 15 because nobody is able to help.
Who or what do you feel is your driving force in life?
Survival. I was born with it ticking in the back of my head. It’s made it difficult to connect with other young people with an incredible lightness of being. But it’s also led me to discover my voice, my power, and do wonderful things. After fighting to reclaim my life from functional neurological disorder (FND), I’ve also been driven by delusional optimism. I cling to the impossible rather than licking my wounds.
You clearly have a talent for the performing arts. How did you first get into musical theatre?
As a child, I reached for whatever I could get my hands on. First, it was school plays, and in New York, it was a failed attempt to be considered, because I had the wrong look. Then, in the UK, I joined theatre societies, did favours for dramatic writing students and participated in fringe theatre. My name started to pop up in glowing theatre reviews, and I was shocked because I hadn’t really considered that I might actually be that good. I was told to get an agent—I thought that would never happen, and then I got one. I auditioned for a West End musical tour. My agent said I probably wouldn’t book it, and I did.
"The state of disability in theatre frankly sucks. The industry should be embarrassed."
Congratulations on your Disability Champion Achievement Award nomination at the 2024 Black British Theatre Awards. What’s your opinion on diversity, particularly with disability, in theatre currently? In your opinion, is there enough?
Thank you, thank you! The state of disability in theatre frankly sucks. The industry should be embarrassed. The discrimination and harassment I received on my production, despite stepping into the lead role with minimal preparation and saving the show, was maddening. The fact that disabled kids are being told by their dance and theatre teachers to stop dreaming and that drama schools are rejecting overqualified applicants for functioning differently is abhorrent. That directors, actors, and writers are hiding their illnesses in fear of being punished makes this industry a laughable bastion of hypocrisy, for it claims to be a progressive island of misfit toys, yet will readily uplift a green girl or anthropomorphic train than someone like me.
You were also chosen as RARE Revolution Magazine’s Next Generation of Women in RARE. What qualities do you believe make a good role model for women and girls with rare conditions or disabilities?
I want to be a counter-narrative to the presumptions of what it means to be a “disabled girl.” We need evidence that you can relentlessly dream and be fabulous without redacting yourself. There is no narrative out there saying that it is ok to exist as we do, so we must create our self-celebration organically. If there’s something that makes you feel out of place, learn to love it and cover it in glitter. And on your acceptance journey, remember to focus not on what’s missing, but on what’s left: how can you use your remaining crayons to finish the picture?
You also took part in CamRARE’s Rare Youth Monologues. How do you feel about that experience looking back?
In my monologue, I mentioned a time in A&E when a doctor was afraid that I had brain swelling. I Googled how long I had to live if their hypothesis was true, and went back to answering customer service emails. My whole life, I’ve pushed through with a smile and repressed my terror. Occasionally I realise just how terrible things have been. In all of my speaking and writing, I’ve detached from that. This monologue was the first time I was forced to allow myself to be vulnerable and scared. It was extremely difficult to access this, but Linseigh has been through hell and I actually should consider holding her.
If you could only perform one song for the rest of your life, what would it be?
'The Year’s at the Spring' by Amy Beach. You cannot sing this song without feeling the jubilation bubbling to your lips, your head, your soul. As a professional, it’s easy to forget how happy you can make yourself by simply spinning a song with your body.
What would your advice be for a young person wanting to break through into the world of theatre?
Some people will hate me for saying this, but find something to love in conjunction with theatre. It’s a fickle industry—one minute, your name is in the headlines & you’ve got fans—the next, you’re on the carousel of rejection. You will survive that carousel by having other things that make you feel full. And even when things feel hopeless, keep training. And don’t play the game. The game is stupid. Ascend with integrity.
Turning a negative into a positive, what’s one thing you’ve gained from NEC?
I don’t take my life for granted. Because of this, I believe I’ve learned, at a young age, what it means to live my life with meaning. It is such a fragile blessing. I’m happy with what I’ve been able to do with it through my rare disease work.
What is the most important lesson life has taught you?
I used to be such a nerd. I focused on my work & didn’t have a life—living was for later. Then my brain shut down, my future disintegrated, & I suffered through a living death. When I got my second — third? — shot at life, I realised I couldn’t wait for Someday—Someday can easily become Never. So I stopped doing what was safe and started reaching for what I really wanted—the dreams and experiences that could make me happy. People criticise me for being impact and passion-driven instead of making monetisation the pinnacle of my existence. My life is a raindrop—I have my own idea of what matters.
Tell us a quote that you resonate with
“If they don’t give you a seat at the table, bring a folding chair.” – Shirley Chisholm
Who or what is your RARE inspiration?
Every rare patient who has turned what could have been a rather bleak, helpless existence into a life of action & purpose. So many have discovered their capacity for leadership and positive change through challenges that so many could never face. It’s remarkable.
Last time, Dylan Lombard asked: “What would you say to your younger self?”
You will never stop being strange, sorry! But you’ll learn to love it. You can do good with it.
Lastly, what question do you have for the next person on Five Minutes with...?
What’s one thing you would never change about yourself?
Socials
Instagram: @linseigh
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