“Nothing about us, without us” – Senen, Felicity, Charlena and Becky influencing researchers and practitioners who support people with profound disabilities all around the world

Becky, Senen, Felicity and Charlena are all described as having profound intellectual and multiple disabilities.

People with profound intellectual disabilities are often regarded as incapable of doing research. Inclusive Research sprang up in response to the disabled rights movement’s cry of ‘Nothing about us without us’ in the late 1980s, early 90s, and huge strides have been made since then in including people with moderate learning disabilities in the research process.

Researchers evaluating the impact of research done inclusively have concluded that it adds value to the research.

Throughout the whole of 2023, Becky, Senen, Felicity and Charlena worked with Jo Grace, as together they explored ways in which people with profound intellectual and multiple disabilities might meaningfully do research.

It was, at every step, a collaborative process, with Jo learning enormous amounts from Becky, Senen, Felicity and Charlena; as the year unfolded they gradually found a way of doing research together and collaborated on a piece of research that looked at embodied identity.

Their work has influenced researchers and practitioners who support people with profound disabilities all around the world.

Two research papers have been published; a poster about the work won the National Centre for Research Methods poster competition; and it has been further presented at an international conference hosted in Glasgow and at the SCDTP annual conference.

The work has been further shared on social media, where its influence has led to people reconsidering how they view people with profound disabilities, in particular making people reconsider how they seek consent/assent from people with intellectual disabilities.

The Royal College of Speech and Language Therapists published a tweet about Jo and Becky’s work together as an example to all of their students of respectful practice with people with profound intellectual disabilities, and a short film exploring Felicity’s identity was watched thousands of times across platforms.

Senen, Becky, Felicity and Charlena are all described as having profound intellectual and multiple disabilities. Each has a long list of various diagnosis that affect every aspect of their lives. Researcher Jo Grace continues:

“They do not use standardised forms of communication. Becky is able to walk and Charlena can walk with support. They all face complex health challenges. But, lists like this are rather grim: I’d rather tell you about them…”

“Becky is vibrant, full of enthusiasm, quick to leap into joyful expression – squeals and jumps, and the biggest smile in the world. She’s aware of everything. She’s a great friend, sensitive and gentle, accepting of difference, and generous of spirit.

“Charlena is intelligent and curious – she manages multiple channels of ongoing information and is good at getting everything in hand and then directing her attention in a purposeful way. The people who support her say at times it feels as if she can see into your soul.

“Felicity is elegant and graceful. She is brave and copes with the many challenges life presents her with, in a very honest way. Her smile and giggle have to be earned, making the gift of them all the more valuable.

“Senen is riotous and mischievous – she is a fan of the open air, an embracer of wind and rain, and raucous parties. She has very limited movement, but this does not in any way limit her expression and ability to reach out to people and invite them into the fun there is to be had in life.

“She often experiences pain and discomfort but she never lets it stop the fun for long. She is someone who enjoys being a part of everything, a part of the group, a member of the party, of the community. I imagine if Senen had a body that did as she directed it that she would bake for people and host the party. That she’s not able to do this, doesn’t stop her from creating the feelings of warmth that such actions create.”

Jo, what a beautiful way of describing these four wonderful women. Together, you’re continuing to lead the way in giving real meaning to the words, “Nothing about us, without us.” For that, this Leaders List award for Senen, Felicity, Charlena and Becky is so very well deserved. Congratulations!