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Boundaries of care and parenting: How does citizenship and care intersect in the lives of parents of disabled children?

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Parents of disabled children experience an intensification of what is expected of them as parents. They do so in a context where social responses to disability mean that they are stepping outside normal narratives of family; where they are far more embedded in medical practices that sustain their childs life; and where, in the UK, welfare provision is directed towards parental responsibility for care. The question is whether the additional care needs of children with disabilities should be seen as simply additional components to the parental portfolio of care responsibilities? Parents can experience the role of being intensive carers as different from what they expect parenting to be.

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Modes of care and mothering: How does citizenship and care intersect in the lives of mothers of disabled children? Dr Janice McLaughlin, Executive Director PEALS, Reader in Sociology, Newcastle University [email_address]
Introduction Care, mothering and feminisms Care, mothering and subjectivity Care and disability feminist and disability studies disputes Focus on early intervention and conditionality
Research Project Background Parents, Professionals and Disabled Babies: Identifying Enabling Care (http:www.shef.ac.uk/inclusive-education/disabledbabies/) ESRC funded, Newcastle University and Sheffield University Emma Clavering, Pamela Fisher, Dan Goodley, Janice McLaughlin, Claire Tregaskis
Fieldwork Summary Over 18 months of longitudinal fieldwork with parents in 2 locations. 23 families with children aged 5 to 15, reflecting back on early experiences. 16 families with children aged 3 months to 4 years old, reflecting on current and changing experiences. The majority interviewed 3 times. Mixed range of special needs and social background amongst the families. Over 50 observations. 6 Focus groups with health and social care professionals.
Mothers as therapists Early Intervention therapies Role of informal carers Do mothers want to become therapists? wed dealt with oxygen, but not at those levels, and theres only so much you can cope with. We knew what was normal, for us normal was the low levels of oxygen, whereas Frank was on high levels of oxygen. It gets to the point where you have got too many things to think about, I couldnt do it, we didnt want to do it wed had a period of nearly a year where hed had none of that, he wasnt on oxygen. And then when it came to the point where we might have to do some of those things again, you dont want it. Youre tired, its then not normal its then a medical problem and somebody else will have to deal with it. (Debbie, IV1)
Home as a site of therapy Home as a complex space Where does responsibility lie? What form should therapy take? The portage worker is an example of somebody who did nothing constructive to help. One time she brought me a chart to fill in and tick off tasks each day: achieved, not achieved, partially achieved, which is just too controlling and you cant do that. I felt she was policing how much I was doing each day, because she seemed to be disappointed with the level of progress that Joe was making. And, after that my feeling from her, was always this hidden agenda of, well youre not doing enough thats why youre not making progress, that's always what I got from her. (Kay, IV2) Complex reasons why mothers participate in therapies
Purpose of Early Intervention Improved quality of life Seeking normality Seeking the good citizen Reduction of burden The push to get better increases the requirement for children and their parents to work to overcome their disability.
Conditional Care Multiplicity of care roles When does care end? I know hes only seven but Im quite aware that he might not leave home when hes 16 or 18 and, go off to university and things like that. He could be a lot more based at home. If not all his adult life, for a much longer time than you would expect. I think of myself as a carer. I think its just, its another one of these like balls that youre trying to juggle, as well as being a parent, youre not a parent of a child who can even dress himself and things like that, Jack still needs a lot of help getting socks and shoes and cant do buttons, things like that. (Jane, IV3)
Additional Responsibilities Administration seen as additional: I used to spend Monday afternoon every week fighting for services for Joe, or arranging appointments, or administrative stuff. And then instead of just being his mum, Im his case manager, Im his physio, Im his speech therapist, Im his advocate. (Kay, IV1) DLA Sarah: red tape bureaucracy, form-filling, sometimes does take precedence over life , or just living. (Sarah and Nick, IV3, our emphasis) medical categories dominate in authorising entitled bodies (Kelly 2005: 197); framing the child in particular ways, which both signal them as flawed citizens, and also restrict their rights to be supported and cared for.
Transformative potential of care Within the kind of care identity women articulate we can also see cares expansive possibilities and political potentialities. Well, I have changed, I have become more assertive and not letting things lie, and really pushing and I think getting out there and finding out the information for yourself, and finding out your rights and your wrongs, and talking to other parents whove been through similar things before you, thats definitely helped. (Angela, IV1) but like a normal person, her rights need to be respected as well, as the rights of a normal person are respected. (Corinne, IV1)
Transformative Potential of Care The caring identity of mothers of disabled children is not always perceived as a private role Transformative care activities engage with re-evaluation of identity, the future, family templates and biographies, and political and ethical values. Mothers are thus politically active on behalf of their children, seeking recognition for their childs rights as future citizens.
Citizenship, recognition and dependency Assessments of welfare eligibility, emphasise the significance of medical criteria as a way of classifying disability in order for parents to receive any state support in caring for their child Mothers seek to include in their care practices a challenge to contemporary forms of narrowing the scope and boundaries of formal care. Autonomy and citizenship Where does dependency sit?
Citizenship, recognition and dependency Disabled children as outside the range of human acceptability (Landsman 2003: 1980). Dependency as part of human condition Dependency as a social responsibility Dependency within citizenship Interdependency as a social responsibility rather than parental/mother responsibility

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Boundaries of care and parenting: How does citizenship and care intersect in the lives of parents of disabled children?

  • 1. Modes of care and mothering: How does citizenship and care intersect in the lives of mothers of disabled children? Dr Janice McLaughlin, Executive Director PEALS, Reader in Sociology, Newcastle University [email_address]
  • 2. Introduction Care, mothering and feminisms Care, mothering and subjectivity Care and disability feminist and disability studies disputes Focus on early intervention and conditionality
  • 3. Research Project Background Parents, Professionals and Disabled Babies: Identifying Enabling Care (http:www.shef.ac.uk/inclusive-education/disabledbabies/) ESRC funded, Newcastle University and Sheffield University Emma Clavering, Pamela Fisher, Dan Goodley, Janice McLaughlin, Claire Tregaskis
  • 4. Fieldwork Summary Over 18 months of longitudinal fieldwork with parents in 2 locations. 23 families with children aged 5 to 15, reflecting back on early experiences. 16 families with children aged 3 months to 4 years old, reflecting on current and changing experiences. The majority interviewed 3 times. Mixed range of special needs and social background amongst the families. Over 50 observations. 6 Focus groups with health and social care professionals.
  • 5. Mothers as therapists Early Intervention therapies Role of informal carers Do mothers want to become therapists? wed dealt with oxygen, but not at those levels, and theres only so much you can cope with. We knew what was normal, for us normal was the low levels of oxygen, whereas Frank was on high levels of oxygen. It gets to the point where you have got too many things to think about, I couldnt do it, we didnt want to do it wed had a period of nearly a year where hed had none of that, he wasnt on oxygen. And then when it came to the point where we might have to do some of those things again, you dont want it. Youre tired, its then not normal its then a medical problem and somebody else will have to deal with it. (Debbie, IV1)
  • 6. Home as a site of therapy Home as a complex space Where does responsibility lie? What form should therapy take? The portage worker is an example of somebody who did nothing constructive to help. One time she brought me a chart to fill in and tick off tasks each day: achieved, not achieved, partially achieved, which is just too controlling and you cant do that. I felt she was policing how much I was doing each day, because she seemed to be disappointed with the level of progress that Joe was making. And, after that my feeling from her, was always this hidden agenda of, well youre not doing enough thats why youre not making progress, that's always what I got from her. (Kay, IV2) Complex reasons why mothers participate in therapies
  • 7. Purpose of Early Intervention Improved quality of life Seeking normality Seeking the good citizen Reduction of burden The push to get better increases the requirement for children and their parents to work to overcome their disability.
  • 8. Conditional Care Multiplicity of care roles When does care end? I know hes only seven but Im quite aware that he might not leave home when hes 16 or 18 and, go off to university and things like that. He could be a lot more based at home. If not all his adult life, for a much longer time than you would expect. I think of myself as a carer. I think its just, its another one of these like balls that youre trying to juggle, as well as being a parent, youre not a parent of a child who can even dress himself and things like that, Jack still needs a lot of help getting socks and shoes and cant do buttons, things like that. (Jane, IV3)
  • 9. Additional Responsibilities Administration seen as additional: I used to spend Monday afternoon every week fighting for services for Joe, or arranging appointments, or administrative stuff. And then instead of just being his mum, Im his case manager, Im his physio, Im his speech therapist, Im his advocate. (Kay, IV1) DLA Sarah: red tape bureaucracy, form-filling, sometimes does take precedence over life , or just living. (Sarah and Nick, IV3, our emphasis) medical categories dominate in authorising entitled bodies (Kelly 2005: 197); framing the child in particular ways, which both signal them as flawed citizens, and also restrict their rights to be supported and cared for.
  • 10. Transformative potential of care Within the kind of care identity women articulate we can also see cares expansive possibilities and political potentialities. Well, I have changed, I have become more assertive and not letting things lie, and really pushing and I think getting out there and finding out the information for yourself, and finding out your rights and your wrongs, and talking to other parents whove been through similar things before you, thats definitely helped. (Angela, IV1) but like a normal person, her rights need to be respected as well, as the rights of a normal person are respected. (Corinne, IV1)
  • 11. Transformative Potential of Care The caring identity of mothers of disabled children is not always perceived as a private role Transformative care activities engage with re-evaluation of identity, the future, family templates and biographies, and political and ethical values. Mothers are thus politically active on behalf of their children, seeking recognition for their childs rights as future citizens.
  • 12. Citizenship, recognition and dependency Assessments of welfare eligibility, emphasise the significance of medical criteria as a way of classifying disability in order for parents to receive any state support in caring for their child Mothers seek to include in their care practices a challenge to contemporary forms of narrowing the scope and boundaries of formal care. Autonomy and citizenship Where does dependency sit?
  • 13. Citizenship, recognition and dependency Disabled children as outside the range of human acceptability (Landsman 2003: 1980). Dependency as part of human condition Dependency as a social responsibility Dependency within citizenship Interdependency as a social responsibility rather than parental/mother responsibility