37. LEARNING DISABILITY or INTELLECTUAL DISABILITY… What’s in a name?

Words matter. Names matter. Your name is part of your identity, it’s your visiting card. Hello, my name is… and what’s yours? You want to feel that your name fits you like a second skin. 

If your name is too much of a mouthful, it will get shortened, so you’d better get in there quick. You want to make sure that the shortening that makes sense to you and, crucially, that you like it. That’s why we changed the name of this project, from the Developing effective service models for adult palliative and end of life care for people with a learning disability Project to the DAPPLE Project.  

The term LEARNING DISABILITY has always been part of how we describe our team at Kingston University: “The Kingston University Learning Disability Research Team”. But the question is: Do we like the words “learning disability”? Does it make sense, to us, and to others? These questions are especially important for the people we label as having a learning disability. Then, once we have agreed on the right words, we can try and find a way to make it a bit shorter and snappier. Not an easy challenge for “Kingston University Learning Disability Research Team”. KULDRT, anyone? 

So we’ve had lots of discussions in the office. What words we use really does matter. The problem is that terminology keeps changing, and quite rightly so, because our understanding of what it means to have a learning disability keeps changing too. Nowadays, terminology includes: 

• Learning disability (used in the UK only)  

• Intellectual disability (used most commonly outside the UK, including at international conferences and in international journals) 

• Intellectual and development disability (used in the USA) 

• Special needs (or Special Educational Needs and Disabilities: SEND) (in the UK, this covers both learning disabilities and learning difficulties – see below) 

  
  

Confusion reigns. For example, in the USA, “learning disability” means something very different from how we use it in the UK.  It is not linked to a cognitive impairment, but refers to conditions like dyslexia. 

Equally confusing for many people is the term LEARNING DIFFICULTY. When I first came the the UK (1980s), that was the term used for what we now call “learning disability”. However, nowadays, “learning difficulty” in the UK is similar to “learning disability” in the USA: it does not affect general intelligence, but is an umbrella term for conditions such as dyslexia, dyspraxia or ADHD. 

Are you keeping up? Let’s go a bit further back and throw in a few more terms! Some of us (myself included) will remember MENTAL HANDICAP. You might also remember RETARDATION. Before that, we had terms like FEEBLE MINDED and IDIOTS – serious medical terms that have thankfully been binned as a description of what we now call “learning disability”. It’s telling that when these terms pop up in present-day language, they are terms of abuse. They are used for name-calling. 

And there lies the crux of the problem. We can probably all agree that people with disabilities benefit from support and reasonable adjustments. Otherwise, many people would not have access to the living the same healthy and good quality lives as the rest of the population (think access to transport or to doctors who understand your communication). It is helpful to have a word to describe “learning disability”, because it helps us all look at what we need to do in order to include everyone. 

But until there is no stigma and no discrimination, the terminology will keep changing. Because however neutral or user-friendly the words, however much people themselves feel the word “fits” them, at some point they will become terms of discrimination or even ridicule. I vividly remember what Gary once told me (he was my first research assistant with a learning disability, back in the early 2000s):  

The words “special needs” were undoubtedly coined with the warmest of intentions, and on the face of it they seem like nice words – but as Gary discovered, his peers had made a lovely word into a term of abuse, and that was confusing. “Hahaha, you’re SPECIAL!” 

So, back to our conversations in the office. I wanted to decide whether we should be known as a team that does INTELLECTUAL DISABILITY research, rather than LEARNING DISABILITY research. It makes sense for research that has international relevance and reach (and our research definitely does). But I was clear that if my colleagues with a learning disability did not feel the term “intellectual disability” was a good enough fit with how they want to describe themselves, then it was off the table. 

We have decided to go with INTELLECTUAL DISABILITY. Watch some of our discussion here - but the debate hasn’t ended. Not everyone is equally comfortable with the term. Does it sound like you’re not intellectual enough? Isn’t there more to people than a disabled intellect?  

So, I’m pretty sure that in a few decades, yet newer terms will have emerged. But for now, this is what we are stuck with.  

The good news is that this has allowed us to find an excellent short name for what is now the Kingston University Intellectual Disability Research Group. From now on, we will be known as The KIND Research Group. 

When Jonny suggested this (all credit to him!), we whooped and cheered.

We might not be utterly comfortable to say that we (or our colleagues) have a learning disability or an intellectual disability. But we are all delighted to say that we are KIND researchers.  

So, if the term intellectual disability changes again in the future, I am determined that we will still be KIND. 

We have started a new Facebook page, where we will share our story as KIND researchers, and all our projects, including the DAPPLE project.

Do follow us and be part of the story. Whether you’re a person with a learning/intellectual disability, a family carer, a support worker, a manager, a doctor, a nurse, a government minister: We can only do the best possible research if we hear all your voices, your problems and your ideas.  

If you’re not on Facebook, watch this space, as we will branch out into other social media outlets in 2026. Let us know which platforms YOU use, so we can consider meeting you there. 

Written by Professor Irene Tuffrey-Wijne, Principal Investigator at Kingston University London.