Bioethics in Dialogue with People with Profound Disabilities?

For my Blog this week I am quoting directly from a paper from an unusual source (unusual for Intensive Interaction that is) by Dr Pia Matthews, a lecturer in bioethics and moral theology. So below I have reproduced some interesting, and at times possibly quite philosophically challenging quotes from this paper:

Communication Strategies and Intensive Interaction Therapy Meet the Theology of the Body: Bioethics in Dialogue with People with Profound Disabilities, by Dr Pia Matthews in The New Bioethics (2013), vol. 19 (2), 97–110.

'Although no one can fully come to know another person, knowing more about how that person is can help to break through some of the things that isolate people from each other'.

'The barrier to communication happens long before an attempt at communication is made'.

'Like many therapies, intensive interaction is only as good as the practitioner. It relies on the practitioner’s skill, how resourceful she is in the identifying communication and how creative she can be in sharing that communication'.

'Simply looking at intensive interaction from a practical viewpoint does however neglect some more serious problems. The therapy encourages one of the partners precisely not to be herself.  By asking the partner therapist to copy the actions of the other in order to break into the other’s world the partner therapist’s acts no longer reflect who she is. Moreover, it risks being intrusive instead of a way of ‘being with’ another in companionship. In addition there is more significant risk that some practitioners ... implicitly believe that the person with disabilities is a person or mind trapped in a crippled body, as if the body is a useless or indeed limiting extra, and that it is the job of the therapist to reach out and free this person'.

'Inevitably the situation of the person with disabilities is subject to the interpretations of the partner therapist and so the person becomes vulnerable to the other ... Furthermore, if the relationship is said to begin when there has been a response then it would seem that the practice of intensive interaction need not necessarily recognise and respect the dignity of each person. At times it does not seem to be able to avoid one person becoming an object for the other'.

'... in the intensive interaction approach to people with disabilities bodily action has ‘the most basic and essential significance for grasping the subjectivity of the human being’ (Pope John Paul II -1993: 224) ... Furthermore, this Thomistic* language of the body applies to all human beings whether abled or disabled. This means that it specifically points to a fundamental respect for all human beings as sharing in the same kind of human nature. There is no ‘them’ and ‘us’; there is only ‘we’.'

Some interesting food for thought! ... and the moral or ethical arguments for using Intensive Interaction are possibly an area we should be thinking about much more when advocating for it's use. Perhaps we should be clearer in our claims that Intensive Interaction is the morally correct way to think and act when we are trying to socially connect with our communication partner - irrespective of any spiritual or religious views that we might hold. 

Yes we do Intensive Interaction because it is theoretically coherent; yes we do Intensive Interaction because it is demonstrably effective ... but perhaps most of all we do Intensive Interaction because it is simply the right way to be with people.

[*i.e. from the philosophical thinking related to the work of Thomas Aquinas].

'Delivering Intensive Interaction Across Settings' - edited by Mark Barber & Graham Firth

Edited by Mark Barber and Graham Firth. 

Kindle Edition - £0.99 from Amazon (we tried to make it free, but the computer said "No"- this is the minimum fee allowed)

https://www.amazon.co.uk/dp/B07NRGFS3R/ref=sr_1_5?s=books&ie=UTF8&qid=1550225112&sr=1-5 

'Practitioners of Intensive Interaction, I.I.Coordinators, Heads of Service, Principals and Psychologists from Australia, UK, New Zealand and Denmark describe the practices, strategies and considerations they have used while organising and implementing Intensive Interaction across services'.

We hope that across its 14 insightful chapters this book will help as many Intensive Interaction practitioners as possible, across a range of care and educational settings, provide the best quality Intensive Interaction to all those who might benefit.

By reading about, and learning from, the experiences and reflections of our book's dedicated contributors, we hope that other services and organisations can more confidently apply Intensive Interaction in the most effective ways possible.


The Contents

Introduction and Forward: Mark Barber & Graham Firth

Chapter 1: Mark Barber - Bayside Special Developmental School: The proving ground for Intensive Interaction in Australia.

Chapter 2: Ditte Rose Andersen - Creating a clearing for live activity: exploration, decisions and steps in implementing Intensive Interaction in Denmark.

Chapter 3: Jules McKim and Judith Samuel -Twenty Years of Developing Intensive Interaction in a National Health Service Setting.

Chapter 4: Ric Day - Intensive Interaction in a Special School: The Leadership Challenge.

Chapter 5: Susi Stephenson -The Ongoing Adventures of an Intensive Interaction Coordinator working across a large county preschool specialist education team.

Chapter 6: Janee Williamson -Tensions and Triumphs: Supporting the Implementation of Intensive Interaction within and across schools.

Chapter 7: Kieron Hubrick - Intensive Interaction Implementation and Culture Building in a New Zealand Special School.

Chapter 8: Janet Gurney - “Your singing is crap: and why do you sing anyway?” ... or... “How can we understand each other?”

Chapter 9: Sue Lowry - Implementing Intensive Interaction and the Art of Plate Spinning: Establishing, Building and Maintaining a Robust Intensive Interaction Community of Practice in a Large Special School.

Chapter 10: Sara Moroza-James - At home with Tom: maximising my son’s potential with Intensive Interaction.

Chapter 11: Abigail Everiss - Integrating Intensive Interaction: A Specialist School’s Community and Practices.

Chapter 12: Deb Dowling - Intensive Interaction in a Special School Setting: Eleven years and still developing.

Chapter 13: Louise Golshevsky - Learning, communication, teamwork and respect! We love it at Glenallen!

Chapter 14: Graham Firth - A view on organisational and institutional issues: the theory of change management.

The Interactive Café in Leeds ... some history

This week will see the final regular session of our combined Leeds & York Partnership NHS Trust and Leeds Community Healthcare 'Interactive Cafe' at Bramley Fulfilling Lives Service. To mark this final session, I have copied out a description of our Interactive Cafe from The Intensive Interaction Handbook (2nd Ed, 2018). I would just like to thanks the literally hundreds of service users, staff, parents/family members and volunteers who have supported us, and made these sessions such a truly fantastic and enjoyable aspect of our work.

An ‘Interactive Cafe’ is a pre-planned and yet informal social occasion that is specifically set up to support the use of Intensive Interaction with identified service users or clients. The relaxed cafe atmosphere is created to make everyone feel welcome, no matter how difficult they generally find social interactivity or how profound their intellectual disability.

The basic idea behind the Interactive Cafe was to disseminate the general message of Intensive Interaction, and at the same time, to increase the opportunities for everyone who might benefit from the approach to engage in and enjoy Intensive Interactions.

During each ‘Interactive Cafe’ session experienced Intensive Interaction practitioners are present to facilitate the occasion. These practitioners are available to use Intensive Interaction directly with any visiting service users. These facilitators can also offer advice on implementing Intensive Interaction to any support staff or carers who attend, and answer any other questions concerning the use of the approach.

In this way, the support staff present can see directly what Intensive Interaction might look like with the person they support. This enables the support staff or carers to realise that the skills necessary to ‘do’ Intensive Interaction are not ‘out of the ordinary’ in any way, and that Intensive Interaction is almost certainly well within their current capabilities.

During the ‘Interactive Cafe’ sessions: 

• appropriate ‘easy to read’ Intensive Interaction literature and hand-outs are available 
• Intensive Interaction DVD footage might also be shown on any available television or laptop 
• Intensive Interaction training application forms can also be left out for anyone that might be interested 
• other items made available might include various sensory or resource items that might be useful in creating and supporting joint focus interactions with specific service users 
• drinks and biscuits are usually made available at some point as well. 

As people visit more regularly, everyone gets to know each other, and the cafe can provide a comfortable arena for staff to share their experiences, and possibly their concerns, about the approach with other staff and their service users.

p.s. the ‘Interactive Cafe’ was originally facilitated in Leeds by Graham Firth and sadly missed speech and language therapist Marion Crabbe – the first session being at Potternewton Fulfilling Lives Service in early 2006.

More research into the use of Intensive Interaction with people with late stage dementia

Following on from my last blog focusing on a 'discourse analysis' paper about changing the medicalised narrative that usually defines the process of caring for people with dementia, below I've summarised a 2014 paper about the actual use of Intensive Interaction with people with dementia.

Intensive Interaction: to build fulfilling relationships

Harris, C. & Wolverson, E. (2014) Journal of Dementia Care, 22 (6), 27-30.

In this paper the authors (CH & EW) share their experiences of using Intensive Interaction to support people with late stage of dementia. The authors point out that there is a growing recognition of the importance of reciprocity in dementia care, and that Intensive Interaction could be a means to this end as the approach focuses on social inclusion and emotional connectedness.

This paper reported on some research carried out by author CH with three people with dementia. For each of the participants in the research CH found a sense of relationship development over the week of the study, and also in the following weeks. Two of the participants in particular also showed signs of engagement and social interaction, such as ‘looking at carer’, ‘vocalising’, ‘initiating’, ‘smiling / laughing’, which were more prominent in the Intensive Interaction session than in the standard interaction.

For one participant Mr D (who was bed-bound) Intensive Interaction gave him an opportunity to initiate interactions e.g. moving his hand to his ear as CH sang. Mr D also started to change his vocalisations: outside of the Intensive Interaction sessions he vocalised loudly and constantly, but shortly into the first Intensive Interaction session he began to adapt his vocalisations so that they were gentler, and mirroring of CH’s sound): it felt like the give and take of a true conversation and led to a feeling of profound connection.

Mrs K flinched at touch and was isolated through her constant walking. She allowed CH to join her on her stroll.  During sessions there were shared moments of laughter and game playing as Mrs K showed CH her favoured routes and routines. As the Intensive Interaction sessions progressed Mrs K allowed CH to gently touch her arm, and this eventually developed, much to the shock of observing staff, into twirling each other’s hair. Perhaps most important of all was Mrs K’s husband’s comment that, for the first time in months, she had made eye contact with him.

As the authors themselves acknowledge, this study was small and exploratory, but the results suggest that there is great potential for the use of Intensive Interaction with people with dementia, and indicative of the impact it can have on their relationships and well-being.

This paper also goes to explore some other, Intensive Interaction related issues e.g.:

• As Intensive Interaction can be emotionally and physically demanding, ongoing supervision and support is essential. 

• A culture change in services is need to move away from models of reactive communication towards proactively seeking out ongoing dialogues and building trust.

• 'Personalisation' is key, which means communicating in a way that has meaning for the person.

• Concerns about the use of touch are a common barrier to Intensive Interaction, therefore services need to develop 'person-specific touch guidelines'. 

• Intensive Interaction has the potential to be renewing and transformative for staff.

The authors also note that family caregivers showed a keen interest in Intensive Interaction, with many family caregivers automatically communicating in an Intensive Interaction manner having spent a lifetime tuned-in to their family member or partner, particularly valuing the use of touch.

In conclusion: The authors state that Intensive Interaction can be an approach to improving well-being in dementia. Intensive Interaction is an approach that respects personhood, adds quality to the working lives of staff, and reintroduces the possibility of interactions based on 'fun' and 'understanding'.