Meet Louise Dalgleish, photographer, drag king, club night organiser, retail worker, enjoyer of life.
“I do a lot” says Louise, underplaying the fact she currently has 6 jobs. These include part time positions in retail and hospitality which give her the independence to do the freelance work she really cares about: raising awareness around intersectional queer communities. Here Louise uses photography and performance to create intergenerational spaces that document different lives, often ones that don’t fit into a particular definition.
Louise (23) was born with FA and had a bone marrow transplant when she was 11. “When I was a teenager, I never saw people with FA having jobs or doing stuff that wasn’t hospital related” she tells me. “It was getting to know adults with FA like Toby Carr who were doing other things that helped me get thinking about what I’d like to do.”
Like many young people with FA, at 8 Louise made deft use of the internet which told her she had a “childhood disease” and she wouldn’t live past 18. “I accepted it” she says, “I just thought, ‘this is what they’re not telling me, they don’t want to scare me’ and my first e-mail address was ‘rockstarlou1’ because I thought I’ll just be a rockstar, that’s fine.”
She may not play rock (at the moment), but Louise is the star of her own drag king act and regularly appears in Manchester and London’s lesbian venues as Tom Bouy, her 1950’s sailor alter ego.
“People normally know that drag queens are, generally (but not always) men who dress up as women to become divas with big personalities.” Louise explains, “well drag kings are the opposite, it’s usually an exaggeration of masculinity, also a chance to own it and mock it in a fun way. You take on a male personality, you could be a builder who catcalls, a Canary Wharf finance guy or a pirate…”
Originally from Portsmouth, Louise grew up with connections to the navy and the sea so creating the sailor persona made sense to her, “I enjoy being this macho guy who thinks he can get all the girls at sea… and of course there are no girls at sea!” she tells me with a smile on her face and a glint in her eye.
“Louise also curates a club night in Manchester for butch lesbians, studs and people who admire them. “It’s intergenerational” she tells me with a glimmer of pride, “there are young people like me, but also 70-year old’s who bring their granddaughters, and 40 year olds, we’ve got every generation who come to share their stories. We even had women involved in Greenham Common Women’s Peace Camp who shared their experience. It’s a great way of celebrating subcultures and our elders. I didn’t think I’d ever create a space like that. It’s funny how things have turned out!”
At school Louise was restrictive of her ambitions, it seemed there was no point in thinking about having a career. “It all just happened because I was doing what my peers were doing. I was determined to keep up with school (even when I’d missed nearly two years of it) because I wanted to stay with my friends.”
This determination got her through school, college and university. She recently graduated with a degree in Interior Architecture and Design from Manchester Metropolitan University. “I’ve learnt to ask myself what I enjoy doing and follow that” she tells me, “you don’t need a plan, just see what happens.”
Louise has also applied this philosophy with her photography. Working under the commercial name The Butch Order, Louise creates portraits of queer individuals and reportages of events, documenting different, often intersectional, communities, capturing the many things woven into their identity such as ethnic background, religion, sexual preferences and gender.
“I’d like to do my freelance stuff full time” she tells me, “and not have to put shoes on people’s feet or serve customers who click at you, but you need to do things in life… I’ve spent enough time in hospitals, sitting at home and not being allowed outside, I’d rather work.”
Corporate work isn’t always easy for people with FA, “It’s hard to find the right time to bring up that you have a ‘terrible disease’. I try to keep it to myself because I don’t want to be treated differently, but there comes a time when questions are asked about why you are having all these doctor’s appointments.” Often colleagues don’t know how to react, “I’ve had my situation compared to depression and chronic fatigue” Louise tells me, “and it’s just not the same!”
Louise has found it helpful to connect with other adults with FA and people with long-term cancer, finding herself in a community of very different people who understand what it’s like to have a condition that isn’t going away. Some of these she met through Fanconi Hope and others through organised activities such as the Ellen MacArthur Cancer Trust sailing trips.
Another source of support is her partner, who Louise also met at university. “A lot of people don’t expect you to be in a relationship” she says, “and if you’re in an LGBT relationship that’s another layer of complexity. It’s as if they don’t see past your illness” she continues, “they think ‘that’s an ill person and that’s the person who cares for them.’ But we look after each other, like other couples.”
I ask Louise what it feels like to be an inspiration to others. “I’ve always hated the idea that I’m ‘an inspiration’ or ‘so brave’ because of my illness. To do these things you need to have had some choice in the matter. Now I’m getting used to the idea of being an inspiration in something other than not dying.” She replies.
“My dad sent me an AI summary of what the internet says about me the other day. I read it and was surprised that it made me sound really good, like someone capable of contributing to society. FA was mentioned in the context of the advocacy I’ve done around it, not as the source of my achievements, that’s how I like it to be.”
This article is part of a new series where we’ll be profiling adults with FA as a way of showcasing their lives beyond their diagnosis. With this, we hope to encourage young people with FA to find their own way. If you’d like to be interviewed for our next newsletter, please contact katie@fanconihope.org