Sensory Stories with Joanna Grace

Sensory Stories in the lives of individuals with PMLD

Joanna Grace: special educational needs and disabilities consultant

http://jo.element42.org/sensory-stories

Individuals with Profound and Multiple Learning Disabilities (PMLD) are amongst the most marginalised members of our society. Despite the obvious need for specialist care they tend to receive fewer services than people with less complex conditions. Children with PMLD often receive fewer responses in their attempts to communicate than typically developing children and the voices of individuals with PMLD are rarely heard in research terms. The result is that they are in danger of being denied the basic dignity of being considered human.

A significant phenomena in living with PMLD is that interaction with the world is defined by sensory experience. Whereas most of us use language to define our sense of self; using words quite literally to shape, (re)construct identity, with PMLD the most direct and often sole means of engagement with people, environments and objects is through touch, sight, sound and movement.

The creation of ‘Sensory Stories’ achieves what Dunn describes as ‘embedding the experience of being human, in the sensory events of everyday life’.

Sensory Stories are simply sensory experiences sequenced within a narrative that can allow individuals with PMLD to participate in the world and provide a way for them to be ‘heard’. As a special educational needs and disabilities consultant, I generate stories from the sensory experiences offered by everyday objects.  By facilitating dynamic and involved sensorial experiences with individuals I can ‘listen’ to their responses and begin to understand their worldview.

Historically these individuals have been considered incapable of expressing themselves, this is a view that needs re-evaluating. The ability of individuals with PMLD to be heard depends entirely on our ability to listen. Through the sensory experiences of daily life we can listen inclusively.

Interpretation of an art object:

To create sensory stories I have to be aware of the sensory experiences of daily life at all times. I must pay attention to my senses and not just assume I know what I feel. I need to notice texture, smells, the way the light bounces off different surfaces and remember them, so that when I’m at my desk thinking “what feels like a….” I will have a link in my memory.

When we live without paying attention to our senses we experience a dulled version of life. Have you ever listened to a seagull’s cry and realised that it sounds like a cat’s meow or felt the texture of a feather and been reminded of a gentle breeze. Our senses can surprise us; can contradict what we thought we knew. The Sensorial Objects in this exhibition ask us to pay attention to our senses so we might find surprises within our daily life.


 

Ockenden, J. ‘The development of a culture of engagement in a service supporting adults with profound and multiple learning disabilities.’ PMLD Link: Changing Perspectives 18, 3, 55, 3–8. 2006

 Gray, G. & Chasey, C. SMILE: A new service development for people with Profound and Multiple Learning Disabilities. PMLD, Link Vol. 18, No. 3, Issue 55, Pg 27-31, 2006 

 Ware Creating a Responsive Environment for people with profound and multiple learning difficulties (2nd edition) London: David Fulton, 2003

 Sheehy & Nind Emotional well-being for all: mental health and people with profound and multiple learning disabilities. British Journal of Learning Disabilities. Vol 33, Pg 34-38, 2005

 Lacey, P. The inner life of children with profound and multiple learning disabilities. In: Varma V., editor. The inner life of children with special needs. London, Whurr: 63-80, 1996

 Dunn, W. The Sensory Profile. San Antonio, TX: Psychological Corporation, 1999

 Young, H. & Lambe, L. Multi-sensory storytelling: for people with profound and multiple learning disabilities. PMLD Link Vol 23, No. 1, Issue 68, Pg 29-32, 2011

 Raphael, C. & Clark, M. Christian. PMLD Link. Vol. 23, No, 1. Issue 68, Pg 18 – 21, 2011

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