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July is Disability Pride Month. It’s a time to raise awareness of issues that affect Disabled people and to celebrate our achievements in a world that treats us as outliers. Last Disability Pride Month, I shared ‘What is Disability Pride Month?’, a blog about the origins of the celebration.
This year, I share the stories of some Disabled people, each of whom have brought flair and uniqueness to their chosen field of work. They have often inadvertently improved the lives of non-disabled people, too, a phenomenon known as the Kerb-Cut Effect.
As Disabled people, our fight for equity often appears to be focused on our right to be viewed as ordinary individuals. We shouldn’t need to be considered exceptional or inspirational to be deserving of the access or dignity afforded to others.
At the same time, there is something to be said about the experience of parsing a world that that presents barriers; it can create outside-the-box thinkers, who then go on to achieve things no one has ever achieved before. Non-disabled people reap the benefits of Disabled people’s inclusion in every facet of life, whether they realise it or not!
Happy Disability Pride Month to all our Members, staff, volunteers, allies and the wider disability community.
Wanda Díaz-Merced - Brilliance Brighter than the Sun
Wanda Liz Díaz Merced, Ph.D. was born in Gurabo, Puerto Rico. As a child, she was captivated by the cosmos, and in her daydreams, would pretend to pilot a spaceship to another galaxy. She lost her sight in her adolescence due to illness. At the time, she was already studying astrophysics and was preparing to forge a career in the field.
Dr Díaz realised that the light curves astronomers use to study astronomical phenomena, like radiation from stars, were simply data points represented visually, and that there was no reason these data points could not be represented through sound instead. She worked with a team to convert the data to audio, a process called sonification, and is now able to be an astrophysicist at the level of any sighted astronomer.
In fact, there is a significant uniqueness to Díaz’s work, as sonification reveals information missed when studying with visual analysis alone. This means that sighted astronomers benefit from the sonification of data, too!
Díaz is an expert on black holes and Big Data (data sets too large or complex to be processed by conventional software). She travels all over the world to champion accessibility in science.
Selwyn Goldsmith – Architectural Pioneer & Inventor of the Dropped Kerb
Selwyn Goldsmith was born in Newark, Nottinghamshire, in 1932. He studied architecture both at Cambridge University and University College London. Shortly after he completed his studies, he contracted polio. This left him with paralysis down one side of his body.
As an ambulatory wheelchair user, he was well placed to consider the design standards that would encompass the needs of those both walking and using wheelchairs. He developed the existing concept of Universal Design, which is based on access integration, rather than segregation.
In 1963, Goldsmith published his pioneering book ‘Designing for the Disabled’. The book would later be used to shape the 1992 guidance on accessibility in the UK Building Regulations and is still considered an important text among architects.
The year after his first book was published, he moved to Norwich for three years and conducted a small study there, interviewing 284 local Disabled people. The study revealed that access to public unisex toilets was a major concern to the participants, so Goldsmith created an accessible unisex toilet for Norwich residents – the first in England! He also developed the idea of ramped kerbs and had fifteen of them installed throughout the city.
Some of the language Goldsmith used in his work hasn’t aged well and is counter to modern perspectives on disability. But his biases were very typical of the time and do not detract from his technical excellence.
Dropped kerbs are an entirely normal feature of urban planning in 2024, and some might even take them for granted. But, as a wheelchair user who has had their journeys disrupted by having to search for dropped kerbs more times than I’d like to recall, I, and many others, including parents with buggies, are still reaping the benefits of Goldsmith’s pioneering work!
Signkid - The First Person to Integrate British Sign Language into Live Hip Hop Performances
Kevin Walker, aka Signkid, is a Deaf rapper, music producer, writer, and performer from London. He lost his hearing when he contracted meningitis as a young child, but music has always been a huge part of his life. ‘People think Deaf people can’t experience music,’ he says. ‘They are wrong. I feel it in the vibrations, and I turn my lyrics into sign song.’
Signkid produces electronic music using Apple Logic software and connects his hearing aid directly to his MacBook. He also uses some vibrotactile products, but doesn't always find them helpful. He features a lot of sub-bass in his music, as it is easier for him to hear, and produces beats at 90 beats per minute (BPM), as this falls in line with his pulse, aiding him in his live performances.
In addition to producing music, Signkid writes lyrics, which are sung or rapped by hearing friends. Like every other Disabled person in a field that treats non-disabled as the default, Signkid must put in more work than his non-disabled peers. Soundchecks and rehearsals are especially important, as he is unable to hear backing tracks.
When he performs his music live, he uses ‘Sign Slang’. As hip hop contains a lot of slang in its lyrics, sometimes there is no official sign created for a word he would like to sign, so he’ll make them up! His meshing of BSL and Black Brtish music culture is groundbreaking and opens up the music industry to other Deaf artists.
Signkid released his debut EP in 2017, entitled ‘Music is the Message’. Signkid champions access equity in music, encouraging music venues to have interpreters and subtitles accompanying live performances.
Jameisha Prescod – Artist, Filmmaker, Producer & Writer
Jameisha Prescod is an award-winning artist, filmmaker, producer, photographer, and writer from South London, with Lupus and other chronic health conditions.
Prescod hosts a weekly podcast called ‘You Look Okay To Me’, which explores a wide range of topics, including science, politics, and sociology, often through the lens of chronic illness, disability, and racism. The podcast topics are always fascinating, well-researched and beautifully delivered in Prescod's soothing voice.
They have built an online community across multiple platforms under the same name; a digital space for those living with chronic illnesses to connect. I came across Jameisha several years ago through this online community and found their often-vulnerable reflections on chronic pain and the feelings associated with it, such as fear of missing out on opportunities by not being productive enough, especially poignant and validating.
In addition to their podcast work, Prescod has produced the films ‘Irpinia’, ‘This is Amapiano’, ‘On Black Pain’, and ‘April 22’, and their first published writing, an essay in the republishing of the 1926 Virginia Woolf essay, ‘On being ill’, was recently released.
Katherine Deane – Trailblazer in STEM
Dr Katherine Deane is Associate Professor in the School of Health Sciences at the University of East Anglia (UEA) in Norwich and is also a wheelchair user with a variety of long-term conditions.
She conducts research on the co-created management of long-term conditions and disabilities. She is also the University’s Access Ambassador and has improved the accessibility of their campus substantially in the last decade.
Dr Deane has provided access advice to a wide variety of institutions, manufacturers, and event organisers, and has impacted the design of roadwork ramps, trains, universities, castles, and even the Houses of Parliament.
In 2023, she was the driving force behind a superb project, ‘Access All Areas in Labs’, in which, she conducted a survey of lab access and created a suite of lab access guidelines for scientific institutions to implement.
Tyler Trewhella – Originator of the Cripplepunk Movement
When Tyler Trewhella shared an image on their Tumblr account in 2014, cigarette in mouth and walking stick in hand, the words ‘cripple punk’ overlaying the image and the caption ‘I’m starting a movement’, they likely had no idea they would do just that.
They quickly received comments from non-disabled people berating this display of disability pride and casting moral judgements on them for smoking. Trewhella realised there was a need for a disability solidarity movement rejecting societal expectations to be ‘the right kind of Disabled person’, and so, ‘Cripple Punk’, or ‘Cpunk’, was born.
The ‘good cripple’ archetype the movement opposes is the expectation projected onto Disabled people to be plucky, inspiring, constantly striving to be non-disabled, and not engaging in behaviours considered grown-up or unhealthy, such as smoking or drinking alcohol.
It’s important to note that the word ‘cripple’ has repeatedly metamorphosised over the last thousand years. Originally a medical diagnosis, the word then became a pejorative term before more recently becoming a ‘reclaimed’ word among Disabled people, through the academic ‘Crip Theory’. ‘Cripple’ is still considered a slur when used by non-disabled people, who are advised to use ‘Cpunk’ to describe the Cripple Punk movement.
The cripple punk aesthetic is influenced by punk music and culture and involves the customisation of mobility aids. Punk and disability activism have been intertwined for decades, but its modern iteration gained momentum following Trewhella’s declaration in 2014.
For many younger Disabled people, who might struggle with internalised ableist messaging and with feeling pride in their identity as a Disabled person, Cripple Punk offers the exact paradigm shift they need. Trewhella died in 2017, but their legacy lives on in the various organisations set up in their honour to empower Disabled people.
Aubrey Smalls – Actor, Filmmaker & Dwarfism Historian
Did you know that the ancient Egyptians worshipped several deities with dwarfism, meaning that Little People were long ago revered as divine beings? I didn’t, until I listened to Smalls’ weekly podcast, 'Dwarfism History’ sharing the rich and untold stories of Little People throughout history.
Aubrey Taylor, known professionally as Aubrey Smalls, is an actor and filmmaker from Arizona with dwarfism. He was adopted and grew up in a family of circus performers. Taylor is a dwarfism historian and educator.
After finding himself the focus of a disability hate group on YouTube, Smalls was inspired to make his directorial debut with the documentary comedy, ‘Dear Average Height People’, a film currently in production, showcasing the real-life stories of people with dwarfism.
The handful of Disabled people I've discussed here are just the tip of the iceberg. I was spolit for choice, so Part 2 is coming soon! If you want to tell us about a Disabled person we should include in this blog series, get in touch at communications@equallives.org.uk
Written by Arianne Brown
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