Accessibility, equality, equity, inclusion…
Words we frequently hear, especially in the world of education, but what do these words really mean? More importantly what do these words look like in practice? Are we seeing these words in action and are we personally helping to facilitate and promote them?My career working in special education, teaching in special schools has involved a great number of discussions about accessibility, equality, equity and inclusion.After 25 years in special education it was this year when I truly saw these words in action - not in a classroom, not in society as a whole, but in a very 2021 manner - in a Zoom meeting. An online meeting resulted in true inclusion.
As a PhD student researching how children and young people with severe and profound learning disabilities communicate grief it was essential that I had an Advisory Group to advise and support my research. People who lived and worked in this field: children, parents, teachers, speech therapists etc.Jonathan is a member of my Advisory Group. He is a young man who was initially mislabelled as having profound and multiple learning disabilities, when in fact he had profound and multiple BARRIERS to learning, not a learning disability. Jonathan communicates by eye-pointing to an alphabet board known as an E-Tran frame. He uses the E-Tran frame to communicate and write. I urge you to check out his book (available here) and his blog, poetry and social media accounts - https://eyecantalk.net/Jonathan has overcome so many barriers to learning to the extent that his involvement in my Advisory Group has been exemplary. A true example of pupil voice, a person-centred approach and an example of total inclusion.
How is this achieved?When Jonathan logs into the Advisory Group meetings the camera is totally on him, there is no sign of his communication partners, no glimpse of the E-tran Frame, wheelchair or any other equipment. Jonathan is front and centre. His communication partners do not say hello to the rest of the group and they are never seen on screen, not even an accidental arm across the camera. As they are not members of the group, they are facilitators to Jonathan being a part of the group. It is 100% Jonathan - his thoughts, views and opinions.
This all takes planning
The agenda and questions to be considered during the meeting are shared in advance. This allows all group members time to prepare. For Jonathan he can prepare his thoughts and answers with his communicative partner in advance of the meeting - through the use of the E-tran Frame and eye-pointing. During the meeting these answers, opinions etc. are typed into the chat box by the communication partner.
There are also important technical points that need to be considered:
Developing an Advisory Group during a pandemic meant that face-to-face meetings were out of the question. Rather than being a disadvantage this has been an immense advantage. By meeting virtually geography, time and cost of travel have not been a consideration. I was able to invite people to join the group from anywhere. I had the luxury of inviting people that I knew would be the best people for the job and I was honoured that they said yes. As such I have members from across England and Scotland.There are still many inclusion battles to be won, but with determination, creativity and the use of 21st century technology we can all achieve so much more. And hopefully one day inclusion won’t need to be discussed. As everyone will be a valued member of society, living in a society that is barrier free.
How do children with severe (SLD) and profound & multiple (PMLD) learning disabilities communicate grief?A scoping literature review.
I've been told that a PhD can be all consuming. It's true thoughts about my studies do occur at all times, including at some very strange times. I've noticed that my most creative thoughts come when I am washing my hair and concepts that I have been struggling with tend to 'click' when I am doing yoga or out walking.
However, I didn't expect to have a major thought whilst watching some gentle Wednesday evening TV, but that's exactly what happened.
The television show in question was The Repair Shop.
Many of the items brought into the wonderful Repair Shop have great significance, not because of their value or rarity, but rather their importance lies in the fact that they belonged to someone who has died. What really struck me during this particular episode was the important part these objects play in maintaining a connection with the person who has died. Such mementos help us to remember people, times and places. They ensure we retain a bond with loved ones who are no longer with us.
The Repair Shop shows us each week that whether it's been one year or fifty years since a loved one died, you still miss them and you still think of them. Items that help to keep the memories of a person alive are priceless.
Objects that support memories and a connection with a person that has died are vital for us all. This includes children and of course that means children with learning disabilities too. Make sure the bereaved and grieving children that you work with have mementos related to their loved ones, it will help them greatly.
I am coming to the end of my first year studying for a PhD in the field of grief and children with special educational needs and disabilities. There has been a great deal of reading in that time. So what have I read and what have I learnt?
My earlier dabbles into research, for my Winston Churchill Fellowship, indicated that there was little written about grief and children with SEND. With the power of the university library services and endless databases I quickly discovered that my initial discoveries were correct. The needs of bereaved and grieving children have had very little research attention and there was a distinct lack of studies and information into the needs of children with severe (SLD) or profound and multiple learning disabilities (PMLD).
My 'research gap' has been clearly identified.
However, it must be noted that there is some really important work for my future research to build upon. My literature review has led me to reading excellent studies relating to bereavement and grief in: adults with learning disabilities, individuals with moderate learning disabilities and neurotypical children. There is much to learn from each of these populations and there are indications that there are more similarities than differences in how grief is communicated by children with and without learning disabilities.
This all makes me very excited about the next stage of my PhD - the research possibilities are immense.
Below are some of the key literature relating to grief and learning disabilities that I have identified.
I have to say a massive thank you to the Maureen Oswin, Hannah Young and PAMIS (Promoting A More Inclusive Society) for their work as this is integral to me being able to develop my research. The research of Oswin, Young and PAMIS is in bold below).
Baikie, A. (2004) 'The creative use of limited language in psychotherapy by an adolescent with a severe learning disability', in Simpson, D. and Miller, L. (eds.) London: Karnac Books, pp. 98-111.
Blackman, N. (2003) Loss and learning disability. London: Worth Publishing
Carpenter, B. and Morgan, H. (2003) 'Count us in: the role of schools and colleges in meeting the mental health needs of young people with learning disabilities', British Journal of Special Education, 30(4), pp.202-206.
Everatt, A. and Gale, I. (2004) 'Children with learning disabilities and bereavement: A review of the literature and its implications', Educational and Child Psychology, 21(3), pp.30-40.
Goodchild, S. (2016) 'Gone, but not forgotten', Learning Disability Today, 15(6), pp.12-13.
Gray, C. (2003) 'Gray’s Guide to Loss, Learning and Children with ASD', Jenison Autism Journal, 15(1), pp.1-44
Hollins, S. and Esterhuyzen, A. (1997) 'Bereavement and grief in adults with learning disabilities', The British Journal of Psychiatry, 170 pp.497-501.
Hume, K. et al. (2016) 'Supporting Students With Autism Spectrum Disorder Through Grief and Loss', Teaching Exceptional Children, 48(3), pp.128-136.
Kauffman, J. (2005) Guidebook on helping persons with mental retardation mourn. Amityville, NY: Baywood Publishing Co.
Lambe, L. and Phillip, M. (2005) 'Understanding the emotional and mental well-being of people with profound and multiple learning disabilities', PMLD Link, 17(52), pp.4-7.
McAdams Ducy, E. and Stough, L.M. (2018) 'Teacher Perspectives on Grief Among Children with Intellectual Disabilities', Journal of Loss & Trauma, 23(2), pp.159-175.
Oswin, M. (1991) Am I allowed to cry? A study of bereavement amongst people who have learning difficulties (book). London: Souvenir Press.
Oswin, M. (1991) 'Don't ask us to dance (some aspects of bereavement for people who have learning difficulties)', in Newnes, C. (ed.) Hillsdale, NJ: Lawrence Erlbaum Associates, Inc, pp. 364-375.
Phillip, M., Lambe, L. and Hogg, J. (2005) ‘The well-being project: identifying and meeting the needs of young people with profound and multiple learning disabilities and their carers’, in Making Us Count. London: The Foundation for People with Learning Disabilities.
Read, S. (1999) 'Bereavement and people with a learning disability ', Nursing Times Clinical Monographs, (30).
Read, S. (2014) Supporting people with intellectual disabilities experiencing loss and bereavement : theory and compassionate practice. London: Jessica Kingsley Publishers.
Sormanti, M. and Ballan, M.S. (2011) 'Strengthening grief support for children with developmental disabilities', School Psychology International, 32(2), pp.179-193.
Vos, P. et al. (2013) 'See me, feel me. Using physiology to validate behavioural observations of emotions of people with severe or profound intellectual disability', Journal of Intellectual Disability Research, 57(5), pp.452-461.
Young, H. et al. (2011) 'Multi-sensory storytelling as an aid to assisting people with profound intellectual disabilities to cope with sensitive issues: a multiple research methods analysis of engagement and outcomes', European Journal of Special Needs Education, 26(2), pp.127-142.
Young, H. et al. (2014a) 'Helping people cope with bereavement', Learning Disability Practice, 17(6), pp.16-20.
Young, H., et al. (2014b) PAMIS’ Bereavement and Loss Learning Resource Pack: Supporting bereaved people with profound and multiple learning disabilities. Dundee: PAMIS.
Young, H. and Garrard, B. (2015) 'Bereavement and loss: developing a memory box to support a young woman with profound learning disabilities', British Journal of Learning Disabilities, 44(1), pp.78-84.
Young, H. (2016) 'Conceptualising bereavement in profound and multiple learning disabilities', Tizard Learning Disability Review, 21(4), pp.186-198.
Young, H. (2017) 'Overcoming barriers to grief: Supporting bereaved people with profound intellectual and multiple disabilities', International Journal of Developmental Disabilities., 63(3), pp.131.
In October 2020 I began my studies with the Faculty of Health, Social, Care & Education at Kingston University & St George's, University of London, but the PhD story actually started in February 2020. Yes, that time shortly before all of our lives changed due to the pandemic.
I was enjoying a half-term trip to Spain. Soaking up the Andalusian sun and delighting in the gorgeous food and drink. A quick look at Twitter revealed a post that I had been tagged into about studying for a PhD in the field of Intellectual disabilities and death. Someone thought I might be interested. My initial reaction was to scoff and think - a PhD, I'd never be able to do that.
The next day I returned to the tweet and followed the link giving more information about the opportunity. My interest started to grow…..especially when I remembered what I had written in my Churchill Fellowship Report in 2018 - that there is a lack of research into the needs of bereaved children with special educational needs and disabilities. As I looked at the application criteria I swung between thinking ‘I can’t do this’ and ‘maybe, I could do this?’
But ultimately I was left with the 2 thoughts:
When I returned home from Spain I did further investigation about the university, the faculty and the PhD programme and of course by this point I wanted it! I began putting my application and research proposal together.
I’ll summarise the following months:
I’m now 6 months into my first year and my literature review is going really well and I’m loving every moment of this new and very different experience.
My literature review question is -
How do children with severe learning disabilities and profound and multiple learning disabilities communicate grief?
I’d love to hear from you if you have any thoughts or experiences on this topic. Please do get in touch.
And keep an eye on this page to find out more about my studies.
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