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Nobody's Normal - Responses to Baby love

Updated Monday 11th December 2006

Our panel offer their personal responses to the first programme in the series Nobody's Normal: 'Baby love'.

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Roger Banks Copyrighted image Icon Copyright: Used with permission

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.

Early in this programme I find myself thinking again about the words of Donald Winnicott, Paediatrician and Psychoanalyst, who said that the first mirror an infant has is its mother’s eyes.

It is the eyes of others on which the developing vision of a child is first able to focus and to begin to see a reflection of its impact on the world. Through this reflection the child begins to build a sense of who they are.

What does a child with a disability see in the eyes of its parents, those of the busy professionals crowded around its hospital bed, the eyes of neighbours or people in the street as they look into the pram?

The child sees what we see in this program, intense love and intense commitment and yet also anxiety and fear and the sense that nothing will ever be the same again. Devotion to a child, whatever it may be, is also combined with a deep sense of loss and mourning for what might have been and what could have been in the future.

We see tremendous strength living alongside brittle fragility. We witness, with a raw and uncluttered vividness, the early struggles with this fundamental, and ultimately fruitless, dilemma of where does normal end and abnormal begin.

Note to self for next clinic: Think more about fathers.


Dan Goodley Copyrighted image Icon Copyright: Used with permission

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.

It does not have to be bad news.

At last, a disability film filled with optimism. Like so many parents I have met through a recent research project we see that living with a disabled child does not inevitably equate with a miserable life.

 

Having a disabled child raises challenging, perhaps novel, often life-changing experiences for parents. Diagnosing impairment loses its tragic meaning when it means a child might live. Parents form close relationships with professionals and members of their families. Disabled children bring parents together. Parents end up working with one another, assimilating new, uncertain knowledge. They learn to live together with the support of significant others.

Disabled children might be seen, then, as a gift in terms of qualitatively shifting the life-worlds of their parents, their siblings and those around them. Disabled children prompt us to value diversity just as all children demand us to rethink our understandings of humanity.

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Micheline Mason Copyrighted image Icon Copyright: Used with permission

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.

Watching the programme as an adult who was born disabled, and who most strongly identified with the children, I was left feeling utterly frustrated.

The parents chosen for the programme were wonderful, thoughtful human beings. I was particularly impressed by the involvement of the fathers, surely a modern phenomena, but again my heart dropped as I was forced to listen to yet another numbed-out mother trying to convince herself, and us, that her unborn disabled child was already suffering so much that the most loving thing she could do was kill it, and interspersing her plea for understanding into real life stories which vividly illustrated the falseness of her argument.

Children who are loved themselves, love life, however difficult it is. You cannot shrink the context of our lives from a deep-rooted, complex and value laden world view of disabled people, to a shallow, simplistic notion of individual choice for which no one must be judged. When you do this you end up with a Walt Disney version of life which bears no relation to the real struggle faced by disabled people of all ages to live a valued, supported, effective life because of the oppression we face, and in which it is often only the enduring love of our parents, friends, lovers and allies which keeps us alive.


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