Recently, an article I have co-written, The emotional wellbeing of students with profound intellectual disabilities and those who work with them: a relational reading, was published in the journal Disability and Society. My co-author was Professor Melanie Nind, one of the originators of Intensive Interaction.
Happily, we were able to have this published without a paywall in place so it is free for anyone to read. I am popping up here to talk to you a little bit about some of the ideas you will find in the article (of course I am hoping you will give reading the article a go but I appreciate academic texts are likely going to be harder going than an SJN post).
Mel is one of the supervisors of my PhD. She, like me, used to be a teacher in a special school and we’ve had many chats about this over the past three years. The article began with us recognising through these conversations, that our experiences had commonalities, despite being in different schools and at different times. Drawing on insight from our experiences and from research we’ve read, our article’s discussion is likely to resonate with anyone who has cared for someone with a profound disability.
Bringing people with profound learning disabilities to the forefront
In the article, we combine our personal experience of working with people with profound and multiple learning disabilities (PMLD), with our experience as academics (my very junior experience, her very senior experience!). By doing this, we talk about people with PMLD and the value of their lives, in the academic space, a place where they might not otherwise pop up. Research informs policy; if your life doesn’t exist in research, then often it’s not even on the table when policy is being discussed. To quote a little from the paper:
“With Goodley (2023), we recognise that the lives, aspirations and contributions of people with intellectual disabilities … are often deemed unworthy and that ‘unworthy lives often become non-theorisable lives; excluded from theory and absent in the curricula of disciplines across the human, social and natural sciences’”
In the article, we think about the interplay between the mental health of people with profound intellectual and multiple disabilities, and the mental health of those who care for them. I want to talk about two of the ideas that are explored in the article, and I hope you will be enticed to go and read in more detail.
Double to triple empathy
The first idea comes from Damian Milton’s fabulous double empathy work. “Double empathy” showed that understanding across a neurotype is harder than understanding within a neurotype. Simply put, it is easier for an autistic person to understand another autistic person than it is for an autistic person to understand a non-autistic person. Likewise, it’s easier for a non-autistic/allistic person to understand another non-autistic person, than it is for a non-autistic person to understand an autistic person.
In our article, we extend the theory to triple empathy out of recognition that within a classroom catering for people with complex care needs you are likely to have multiple neurotypes in attendance. Understanding across neurotype is hard. It doesn’t mean people don’t want to understand or care to understand, it is just that to understand takes effort, work, time, and emotional labour: it is difficult to do. When faced with difficult tasks people struggle. Those who value the understanding most, recognising its significance to the mental and physical health of someone they care about, are likely to experience more pressure. Success or failure to understand can affect the well-being of the people on both sides of the experience.
“Betweenness” and mental health
The second idea I want to talk about here is one I am particularly in love with: the idea of the “betweenness” of mental health.
We are all accustomed to keeping a check on our mental health in the same way that we keep a check on our physical health: we know what is normal for us and notice when things change. It is personal to us.
We understand about the “betweenness” of physical health when someone sneezes in a room we are in! But what of the betweenness of mental health? Is mental health really as personal as it feels? This is one of those things that once articulated seems to really resonate with everyone who hears it.
We can imagine mental health as existing both within us and between us. The mental health of those around us has an effect on our mental health, in the same way someone else’s sneeze could have an effect on our physical health. But it is more than that, we have a kind of shared mental health. A particular team, group, family, creates an experience of mental health that is shared by everyone.
Spaces that support people with profound and multiple learning disabilities, be those classrooms, care settings or family homes, are places of intense feeling. The strength of feeling has a consequence on everyone’s mental health. If we are looking to support:
- our own mental health,
- the mental health of staff who care for people with profound and multiple learning disabilities,
- and especially the mental health of people with profound and multiple learning disabilities,
then considering mental health individually and collectively, recognising the betweenness of mental health, can enable us to better support everyone.
Read the research article here
Read Joanna’s other post on SNJ here. Congratulations to Jo for completing her PhD!
Also read:
- Ordinarily Available Provision for SEND: Friend or Foe? Part 1 from Philippa Stobbs OBE
- Ordinarily Available Provision Part 2: What does it look like and what difference does it make? by Philippa Stobbs OBE
- The Ombudsman wants to investigate complaints about schools: Will the government listen?
- Commons committee lets the Department for Education off the hook—so we’ll do the scrutiny instead
- The new research-informed MetaSENse database of interventions for pupils with SEND
- Research shows “critical information gaps” in most SEND local offer websites, including EHCP eligibility criteria
- Research finds unfounded FII accusations cause “devastating and often life-long impact on children and families” and over 80% of allegations dropped
- Research: Cost of Living Crisis having “profound and far-reaching consequences”, increasing SEND needs while forcing cuts to school support budgets
- What’s happening with the SEND & AP Change Programme— November 2024 update
Legal FAQs:
- Refused an EHCP for college!
- Is my ADHD son being discriminated against for his behaviour?
- How can I ensure my child’s in-school therapy is provided by a professional?
- Can the LA change the name of the placement in Section I of an EHC Plan?
- Does the LA have to maintain the provision in the EHCP if parents are home educating?
- Can you still appeal Section I if your parental choice is named with conditions?
- What should the school be doing when my child cannot attend school due to their anxiety?
- If we move abroad, what happens to my child’s EHC Plan?
- When applying for an EHCNA can we ask the LA to consider our EP report?
- We have moved from England to Wales where can we get help?
- Where can I get help with a disability discrimination claim?
What kind of government is “bold” enough to scrap statutory EHCPs from vulnerable children?May 16, 2025
The SEND reforms in the Schools White Paper reveal rights given, and rights stripped awayFebruary 24, 2026
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Joanna is a qualified teacher who has taught in mainstream and special school connecting with pupils of all ages and abilities. Joanna has also worked in a consultancy capacity to support schools to further their provision for children with additional learning needs. Since setting up The Sensory Projects Joanna's work has expanded, and she regularly works with adult care providers, heritage settings and families. Joanna draws on experience from her own life as well as insight from the research world and her professional background to inform her work. Joanna has family members with physical disabilities and neurodiverse conditions and has also been a foster carer for children with complex disabilities. Joanna is autistic and this enables her to take in huge amounts of information on a particular topic, Joanna uses her ability to focus on the sensory world to inform her work. Joanna is currently studying for a doctorate in Identity and Belonging for People with Profound and Multiple Learning Disabilities.
- Research informs policy: Bringing the lives of people with profound learning disabilities into the academic space - December 4, 2024
- Daydreams that reach around the world: Tackling isolation at the PMLD Conference IV - November 29, 2023
- Using a different lens for neurodivergent children: Don’t treat them as younger, give them the tools to achieve - July 17, 2022
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