Co-production to help families escape oppression
My name is Peter Limbrick and I am passionate about helping families when their baby or pre-school child has major challenges to development and learning.
The challenge might come from cerebral palsy, a genetic syndrome, blindness and/or deafness or intellectual impairment. I have in mind children who have a number of these conditions in combination. I try to avoid the word ‘disability’ because I think it is too negative for such young children.
I think these families in the UK are a severely oppressed minority. Often, it is made very difficult for them to get the help and support they need in bringing up their children and giving the whole family the best possible quality of life. I have come to believe that some form of co-production is the only way to lift families out of this unhealthy plight. This will mean getting some parents and some practitioners to join together as a local early support task force.
Which children am I thinking of?
They might be new babies or infants with some sort of brain damage, perhaps from prematurity or some incident around the time of birth. They might have a known genetic syndrome or a condition with no known cause. They might have difficulties in moving, looking, listening, understanding, communicating and using their hands. A small number of these children have health problems so they need to be tube-fed or have a personal oxygen supply. A smaller number will not see their second birthday.
How might these families suffer oppression?
It is valid in my view to describe families of these babies and pre-school children as a severely oppressed minority group. They suffer prejudice and discrimination, have to struggle to survive with inadequate resources and are commonly financially impoverished. Very often they are socially isolated and sleep deprived. Family members’ mental health (parents and siblings) are put at risk. Study, work and careers are interrupted or terminated. Parents are forced into a choice; they suffer and struggle in silence or they battle to get what they need. This seems like a good definition of oppression.
When we look for causes of this oppression, we see a group of families that largely exist outside of public consciousness, whose struggles and triumphs are not reported in press and media, whose situation is not researched or helped by academics in local universities and who are not acknowledged by their elected political representatives. The general public might rarely or never come into contact with families whose baby or infant has significant challenges to development and learning. This can be because:
the child is in hospital for periods of time and then has frequent visits to outpatients – all keeping the child away from the normal childhood places
parents might be physically unable or nervous about joining other families in mother and baby groups, playgroups, etc
a child’s special buggy, oxygen tank, etc. might make people nervous of approaching and starting conversations
parents’ tiredness and low self-esteem and stress might result in them keeping themselves to themselves.
While people in oppressed groups can and do struggle, more or less effectively, to improve their conditions, parents in this oppressed minority are probably too tired, too busy and too impoverished to fight effective campaigns. Also, the pre-school years pass very quickly, after which parents might be in a long struggle for effective education!
How would local early support task forces help?
Most parents and other family members are not in a good position to campaign for change on their own. A local co-production task force, as I see it, would have some representative parents, perhaps of children who are older now, with some local early support practitioners (teachers, social workers, paediatric therapists, etc) who are passionate for change because they know how families suffer. In addition there could be caring activists*, university lecturers and experienced campaigners. The task force would be in close touch with local families and would be energetic, imaginative and creative in finding solutions to aspects of their oppression.
An important part would be to help prevent isolation and social exclusion, for example by showing mother and baby groups and play groups how to welcome and reassure apprehensive parents and by supporting managers of local facilities and event organisers in thinking how to include these families. Another aspect would be to keep news about these children constantly under the noses of local press and media editors and to send local MPs and Councillors regular information – both positive and negative. Other activities would be thought up in response to situations that arise.
I feel some sort of co-production is the only way to help lift this group of families out of oppression given that parents cannot campaign on their own. I would be very happy to offer my support to people who like this idea and want to explore it. I can also be an at-a-distance mentor for new early support task forces in Scotland.
Peter Limbrick
Principal
Interconnections
E-mail: peter.limbrick@teamaroundthechild.com
Web: http://tacinterconnections.com
* Peter is author of Caring Activism: A 21st Century Concept of Care and Bringing up babies and young children who have very special needs. A 21st century guide for parents, students and new practitioners