An entrepreneur with ectrodactyly, characterised by the absence of certain fingers and toes, who was bullied relentlessly in her youth, with her peers calling her a “monster, alien and mutant”, has said “limitations are opportunities to do something different and amazing” as she aims to challenge “disability beliefs” through cooking.
Bryony Grealish, 44, a speaker and disability trainer from Syracuse, New York, was born with a “severe” form of ectrodactyly, a rare genetic disorder, and said she has “two fingers with limited dexterity” and “one toe on each foot”, meaning they “look like elf shoes”.
She explained that she has minimal bone structure in her feet, which measure approximately six inches in length, and walking feels like she is on “ice skates”, this causes pain in her feet, legs, and back as she has to “pretty much roll on solid bone to go forward”.
Bryony has faced several challenges, including finding correctly-sized and comfortable shoes, writing, and tying her hair, but she has “always found (her) own way to do things” because, otherwise, she would “sit down and do nothing – and that wasn’t an option”.
Bryony never wanted to be defined by her condition, but she said “the emotions that go with the disability” have been her biggest challenge and she has been “laughed at” and bullied throughout her life.
The mother-of-two recalls being called “disgusting over and over again” by her peers, and on one occasion, she stretched out her hand to pay for a $1 cheeseburger while going through a drive-through, and the employee started “screaming in full-on terror”.
Even though there have been “lots of tears” and Bryony sometimes questions whether “there’s anywhere safe for (her) to go”, her courage and desire to help people keeps driving her forward.
She now runs her own business, The Fingerless Kitchen, to inspire cooks of all abilities, and even runs challenges and workshops to teach people how to cook with two fingers, as she wants to change people’s perspectives and prove that you can overcome limitations.
“People are not exposed to disability enough,” Bryony said.
“Disability still is shoved in a corner because people are scared of it, and when they’re scared of it, they like to push it away.
“But when we push it away, you don’t see it and then we have this whole loop of the world not understanding disability.”
She added: “I just hope I can reach people with disabilities and without, and help bring joy and confidence and connection to the world.”
Ectrodactyly is a rare genetic disorder, and symptoms can vary greatly from one person to another, the National Organisation for Rare Disorders says.
Bryony explained that her condition is severe, and this means that simple tasks involve “a real thought process of each little step” or an adaptation, such as with eating and drinking.
She said “every single cup is a different challenge” due to the size and shape of the vessel or handle, as she has to use “physics” to figure out which points of contact on her hands would be best to ensure stability.
Writing and using cutlery can be difficult, too, along with tying up her hair due to “all the twists and turns and scoops”, but Bryony said she can “see more of what (she) can do rather than what she can’t do”.
However, during her younger years, being bullied really “shook her confidence”.
Being called “ugly” and a “monster, alien and mutant” made her “wish (she) never had ectrodactyly”.
“When you’re a kid and you’re trying to build that identity for yourself and find your place in the world, and people are telling you how horrible you are because you don’t look like them – that’s a really hard part of growing up with this,” she said.
“Sometimes you can hide it because you can put your hands in your pocket; my feet are really noticeable because my shoes always turn up, so people are always staring, but I have to live in the world and my hands are going to be out, and that part’s not easy.”
When Bryony finished education and left college, she became a social worker – but after more than a decade in this role, she started to feel burnt out and decided to quit her job and change direction.
This led to the launch of The Fingerless Kitchen in October 2016.
Bryony had learned to cook at the age of eight after watching her father, Charles, and she “found her confidence in the kitchen”, but she noticed there was a lack of representation.
This sparked the idea for her business, as she wanted to introduce inclusive training and workshops and showcase that people with disabilities are capable of doing amazing things.
“When I watched cooking shows, there were no people with disabilities doing cooking shows, so I thought, come on, I have to figure out how to do it myself,” she said.
“There was no representation in magazines, cookbooks, on TV, there was nothing.
“There was nobody like me out here.”
Bryony said she always had this “feeling that (she) was supposed to do something important”, and after launching her business, she wanted to “change disability beliefs through the no thumbs experience”.
“I was taping up chefs’ hands, so they would mimic my disability, to show them that they could still do what they love even if they only had two fingers,” she said.
“I just said, ‘We gave you a limitation and you found all of these opportunities to keep doing it and go beyond’.
“It’s such a simple concept, but there’s so much that happens for the person that’s experiencing that.”
Bryony said it is “a joy” to watch people “think outside the box” during her inclusive workshops, as she believes “the learning happens when you step into another role”.
She continues to cook for her family at home – her husband Elias, 43, a library technician, and her two sons, Aidan, 16, and Ethan, nine – and has recently started to explore the world of foraging as she has a “fascination for what’s around (her)”.
However, outside of this, she wants to continue pushing the boundaries and hopefully one day release a cookbook for the disability community, and she hopes to change people’s perceptions and normalise disabilities to help “everyone get along in the world”.
“People don’t see disability as beneficial,” she said.
“We have lots of different perspectives than everybody else, which is so important and needed, but I feel like I have to influence the world around us to actually making real and lasting change, and remind everybody that we’re only temporarily able bodied.”
She added: “I think a way that I’m really going to help people with disabilities is not trying to fix the disability community, but I need to fix the world around us.
“What’s going to change if we only keep asking people with disabilities to change? It’s not enough.”
To find out more about The Fingerless Kitchen, visit Bryony’s Instagram page @the_fingerless_kitchen or her website at www.thefingerlesskitchen.com.
