‘Belonging’ is the new yardstick by which we measure whether people are full members of the societies they live in. In our rush to adopt this, have we given sufficient thought to those with the most profound learning disabilities? ask Melanie Nind and Iva Strnadová in their book
In all the debates and campaigns for the rights of people with learning disabilities, there are always groups who remain relatively invisible and under-served.
One such group is people with profound and multiple learning disabilities (PMLD) or, to use the more mainstream term, people with profound intellectual and multiple disabilities.
This group’s support needs are highest and most pervasive, and they are likely to have physical and sensory impairments and poor health interacting with their profound cognitive impairment. They are still likely to have segregated school and adult provision.
In reflecting on the UK situation, Rob Greig (2005) observed that these people have not benefited equally or sufficiently from policy changes such as Valuing People, and Jim Mansell (2010) noted that parents reported that their children were often seen as just too impaired to be catered for.
A book about belonging
So where and how do people with PMLD belong today when interest in and the realities of belonging are gaining ground?
As governments have claimed, then diluted and even sullied the concept of inclusion, interest in the idea of belonging has grown. Frustration over what inclusion movements have achieved for people with learning disabilities has left ample space for getting behind a new idea such as with the Belong Manifesto, Catherine de Haas with daughter Johanna launched in March 2018 by two UK organisations, Books Beyond Words and Access All Areas. They advocate pledging simple and practical things we can each do to help people with learning disabilities belong.
Their simple proposal – to get people talking about what it means to belong – got us thinking about whether the concept is expansive enough to include everyone, including people whose learning disabilities are profound.
The Belong Manifesto was one of the inspirations for our new book. Another was the involvement of Johanna de Haas with her mother, Catherine de Haas, in the Social History of Learning Disabilities conferences at the Open University.
Presenting together at what has been an increasingly inclusive event, they demonstrated powerfully how Johanna, who has PMLD, belonged in the line-up of presenters. They were pushing the boundaries of what is possible with open minds and excellent support.
The book idea also took hold during a time when a new generation of doctoral researchers were showing how people with profound and multiple learning disabilities could be participants in their research as well as more generally in the domains of study and practice from which that research came, such as education, life story work, art workshops and everyday communities.
What does it mean to belong?
Working on the book has given all the contributors space to reflect on what it means to belong and the growing literature on this.
Geographers such as Ed Hall and Andrew Power have highlighted the sense of belonging in welcoming spaces, which links the concept to social inclusion and connectedness.
Inclusion, however, implies being on the inside of something, usually mainstream in nature. Connectedness is associated with the number and quality of connections we have with other people and with places. Belonging has links with community and it also overlaps with citizenship – our rights, responsibilities and freedoms as part of society – which is why there is particular interest in belonging in work with refugees.
Belonging, though, carries with it ideas about feelings and identity. It is understood to be a “fundamental human desire” (O’Donohue, 1998) and a basic human need (Antonsich, 2010) central to wellbeing. If we are lucky, we can enjoy a sense of feeling at home, knowing “I belong here” among familiar rituals, perhaps developing shared stories and spending time communicating with people that matter to us (Block, 2018).
Some studies have addressed belonging for people with learning disabilities by seeking their views and experiences.
These have highlighted the importance of having friends with similar experiences, including experiences of having a disability (Renwick et al, 2019; Strnadová et al, 2018). This might mean spending time together in segregated or safe spaces (Robinson et al, 2014). Being able to contribute to society in a meaningful way was also seen as part of belonging (Strnadová et al, 2018).
In the book, we have addressed belonging for people who cannot discuss belonging with us but who might be able to show us in other ways.
Pushing the boundaries
The chapters are organised into three sections: Belonging in Education; Belonging in Research; and Belonging in Communities. Each part includes chapters that show how people are pushing the boundaries of inclusion so children or adults with profound and mu
ltiple learning disabilities are enabled to belong.
Each section has a short account from a family member, which poignantly illustrates the human desire to belong and the forces working against this for families. Through this, we come to understand belonging and its counterpart for people for whom basic belonging is difficult.
We see that belonging is sometimes experienced in segregated settings; people do not have to be in a mainstream setting to belong.
Not all learning disability bodies have got to grips with belonging; self-advocacy organisations often do not include people with PMLD.
New forms of belonging
Without repeating all the arguments in the book, we can illustrate some of what belonging might look and feel like if you have PMLD, according to some of the contributors.
Ben Simmons shows children involving Emma, their peer with PMLD, in their play routines. Emma engages visually and with heightened attention and excitement.
Catherine de Haas relays how a young friend of the family and her daughter shared the fun of swapping shoes.
Mutuality is critical to belonging, but finding ways to simply be together can be hard for adults. This can involve non- disabled people grappling with all their uncertainties about how to relate to the person with profound disabilities in ways that are welcoming and respectful.
Sheridan Forster shares her personal learning journey with this. She tells how she helps care staff to spend short periods of time just being with and focusing their attention on a person. They reflect on that, ultimately learning to become attuned to the other person. Relational belonging here is being attuned together. Jill Goodwin shows how an art installation may help this along.
For Melaneia Warwick, it was seeing the world through the perspective of someone with profound disabilities. In her study, a participant in an inclusive arts project used a body-worn video camera to contribute to the research.
Repeatedly in the book, we see people finding and experiencing their common humanity, being playful together, being focused together or just being together.
In terms of community living, belonging may be more than just finding a place in the hearts and minds of others. It can be about having a rightful presence. In the book, we see people with profound and multiple learning disabilities being a part of research projects and community groups, contributing in unique ways.
Importantly, we see how the people advocating for them negotiate the ethics of their involvement and the practicalities of finding ways to hear their stories.
While training, supervision, creativity and leadership play important roles, the main ingredients here are empathy, will or desire, and time. Without these, people with PMLD will continue to be missing from our playgrounds, our choirs, our conversations and our communities. It is about time they belonged and that we talked more about making this happen.
- Belonging for People with Profound Intellectual and Multiple Disabilities: Pushing the Boundaries of Inclusion will be published by Routledge in spring 2020. It is dedicated to the memory of Johanna de Haas. The contributors are Shoshana Dreyfus, Ben Simmons, Bea Maes, Anneleen Penne, Katrijn Vastmans, Michael Arthur-Kelly, Jill Goodwin, Hilra Gondim Vinha, Debby Watson, Noelle McCormack, Melaneia Warwick, Clare Palmer, Jan Walmsley, Sheridan Forster, Catherine de Haas, Liz Tilley, Sue Ledger, Melanie Nind and Iva Strnadová
Melanie Nind is professor of education at University of Southampton, director of the Centre for Research in Inclusion and co-director of the ESRC National Centre for Research Methods
Iva Strnadová is professor of special education and disability studies and academic lead research at the Disability Innovation Institute at the University of New South Wales, Sydney
References
Antonsich M (2010) Searching for belonging – an analytical framework. Geography Compass. 4(6): 644–659
Block P (2018) Community: the Structure of Belonging. 2nd edn. Oakland, CA: Berrett- Koehler
Greig R (2005) The Story So Far … London: Department of Health
Mansell J (2010) Raising our sights: Services for Adults with Profound Intellectual and Multiple Disabilities. London: Department of Health O’Donohue J (1998) Eternal echoes: Exploring our Hunger to Belong. London: Bantam Renwick R et al (2019) Voices of youths on engagement in community life: a theoretical framework of belonging. Disability & Society. 34(6): 945-971
Robinson S et al (2014) In the Picture: Understanding Belonging and Connection for Young People with Cognitive Disability in Regional Communities Through Photo-Rich Research. Final Report. Lismore, New South Wales: Centre for Children and Young People, Southern Cross University
Strnadová I et al (2018) “… but if you’re afraid of things, how are you meant to belong?” What belonging means to people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities. 31(6): 1091-1102
