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Nobody's normal
 

Responses to Who cares?

 

Our panel offer their personal responses to the final programme in the series Nobody's Normal, Who cares?.

Roger Banks

Dr Roger Banks is a Consultant in the Psychiatry of Learning Disability with Conwy and Denbighshire NHS Trust, North Wales. He has a special interest in psychotherapy for people with learning disabilities and is a founder member of the Institute of Psychotherapy and Disability. He is Vice President of the Royal College of Psychiatrists.

My working life is spent among the organisations whose purpose is to provide care for people with learning disabilities in a wide variety of settings. The nature and standards of that care is our constant preoccupation and that of our clients and their families.

It can work well; one can see people living fulfilling and healthy lives, continuing to develop skills, new friendships and roles in their community. There is nothing that gives me a greater sense of celebratory joy and of injustice being redressed than when I see people who have moved out from decades of living in institutional settings, blossoming and flourishing in their new homes on ordinary housing estates, having neighbours round for summer barbecues, going out to the cinema, planning a holiday in Spain.

It is as if they had spent a lifetime dormant under the arid desert sands and suddenly been brought to life by the arrival of the rain. Yet, recent events brought to light by the Healthcare Commission's report on services in Cornwall, remind us that the potential still exists for things to go badly wrong in the field of social and health care.

Could services ever expect to be able to provide the same intensity of care, support and love that we see Ivor devoting to his son Matthew; could they give him the guarantees that he needs for Matthew's well-being and security? There is a leap of faith that has to be made and a mutual trust developed. Perhaps that can be inspired by the beautiful eloquence of Jackie's description of her life and independence and the touching example of her mother's courage in making the decision to allow her to move on.


Dan Goodley
Dan Goodley is Reader in Disability Studies and director of the University of Sheffield Centre of Applied Disability Studies. He has written widely in the area of disability studies. Recent publications include Self-advocacy in the lives of people with learning difficulties, Disability and Psychology (edited with Rebecca Lawthom) and Another Disability Reader (edited with Geert Van Hove). He is also advisor to the self-advocacy group Huddersfield People First.

Growing old with mum and dad
The 'time bomb' referred to in this piece – what to do with the 30,000 people with learning disabilities who live with their parents in their 70s and over – raises wider questions about the nature of the welfare state at the start of the 21st Century.

The rights and responsibilities agenda of the Blairite welfare state places emphasis on the active citizen gaining their rights often through, wherever possible, a direct contribution to the economy as a worker. But what is to be done for those parents who have looked after their children often without the support of the system?

What now for adults with learning difficulties who have spent most of their lives outside of the system?

This film reminds us of society’s responsibilities to support and care for these adults who were failed by previous incarnations of the welfare state. This is the very least we can offer these families.


Micheline Mason

Micheline Mason is an artist, writer and trainer/consultant on disability and inclusion. She is a mother of a disabled young adult, and was the director of the Alliance for Inclusive Education for fifteen years. She is also a trained counsellor working within the Re-Evaluation Co-Counselling Community.

What struck me as I watched all these programmes was the isolation of the disabled people and those who loved them.

This last programme is the only one in which a parent, Ivor, challenges the complacent world to ask "Who cares?"

He, rightly in my view, does not believe that a person with the level of need of his son would be safe and happy without someone who loves him to oversee his care.

Although the programme attempted a comparison between Jackie and Matthew, there is no comparison. Jackie is far more able and, were she born now, she would be able to look forward to a full, supported life within the community, but we have not yet created this situation for people with high level support needs.

Love is not something which can be bought and inserted into a care plan. Real communities in which humans are connected and share the care of all of its members are the only lasting solutions. The fight for inclusion is the fight for these connections.

As Ivor said "When things get tough we need people to take a step forward, not a step back". It would now be wonderful to see a programme which shows some of the groundbreaking attempts there are to build relationships between disabled and non-disabled people, breaking down this isolation and helping to heal a very fractured world.


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Content last updated: 05/12/2006

 

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