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Disability, Families and Motherhood

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Title: Disability, Families and Motherhood


1
Disability, Families and Motherhood
  • Dr Sonali Shah
  • University of Glasgow
  • sonali.shah_at_glasgow.ac.uk

2
Themes to cover
  • Changing notions of family
  • Family in History
  • Different Family Units
  • Historical responses to Disabled Children
  • Disability, Women, Motherhood
  • The Disabled Family
  • Family in popular culture
  • Family Structure lone parents/ informal carers
  • Barriers for disabled and non-disabled members
    stigma courtesy stigma
  • Policy changes

3
Theme 1 Changing notions of family
  • How have families changed
  • Household Size 4.75 to 2.4 (HMSO, 2004)
  • Infant mortality
  • Parent-child relationships and separation
  • Child labour in mines, factories mill
  • ? accidents and premature death
  • ? 1833 Factory Act by Lord Ashley
  • Marriage
  • Choice of kin not partner
  • Gender roles
  • Marriage about property not love 18th Century
    marital ties

4
  • Nuclear Family not ideal family
  • Two parents and children
  • Women confined to home
  • Trapped in unhappy marriage for life from early
    age
  • Domestic violence suffered in families kept in
    private
  • Divorce and separation not norm ? stigma

5
  • Families of choice
  • Demography move for work
  • Increased life expectancy/ aging population 10
    million over age 65
  • Older mothers reduced rate of reproduction
  • Acceptance of divorce
  • Increased level of single households 10.9
    million in 2013
  • Legislation
  • Womens rights Elimination of all forms of
    Discrimination Against Women (CEDAW, 1979)
  • Children rights United Nations Convention on
    Rights of a Child (UNCRC,1989)
  • Disabled peoples rights United Nations
    Convention on Rights of Persons with Disabilities
    (UNCRPD, 2006)
  • Higher levels of sexual freedom for men and women
  • Increased acceptance in same-sex partnerships

6
  • United Nations Convention on the Rights of
    Persons with Disabilities (adopted 2006)
  • places new obligations on States to protect and
    promote disabled peoples rights and equality in
    all aspects of life
  • First human rights treaty in 21st Century
  • 153 UN country signatories
  • 50 legally binding articles
  • Article 23 Right to Respect and Family Life
  • States Parties shall take effective and
    appropriate measures to eliminate discrimination
    against persons with disabilities in all matters
    relating to marriage, family, parenthood and
    relationships, on an equal basis with others.
  • States Parties shall ensure that children with
    disabilities have equal rights with respect to
    family life. With a view to realizing these
    rights, and to prevent concealment, abandonment,
    neglect and segregation of children with
    disabilities
  • Ref UN Enable web page http//www.un.org/disabili
    ties.

7
Different family units
  • Nuclear

8
THEME 2 History of disabled Childhoods
9
History of disabled childhoods
  • impairment was a punishment for the fall of
    Adam and other sins' (Ryan and Thomas, 1987, p.
    87).
  • Preoccupation with bodily perfection impaired
    children considered undesirable so killed
  • Changlings folklore beliefs that disabled
    children are subhuman (see pic slide 8)
  • Obsession with correction and cure normalise
    children
  • As a child all I remember is being poked and,
    you know, stripped off and made to walk across
    the room in your knickers and stuff like that I
    feel the medical profession has experimented with
    me and my body trying to make it into something
    which is acceptable in the way that I eat, the
    way that I walk, the way that I sit, the way that
    I do stuff. You know, thats what the medical
    profession wants. It wants for you to look and
    act and be like the majority, and if you dont
    fit in then it has to try and bend your limbs,
    and twist your head, so its all in the right
    direction (Shah Priestley, 2011 p.77)
  • Eugenics to ensure human race was not
    contaminated
  • Passive - Institutionalisation
  • Active Involuntary or coerced sterilizations

10
Personal Professional Eugenics
  • Eugene -Well (eu) born (gene)
  • Eugenics - philosophies for improving human
    genome
  • Francis Galton - Pioneer of modern eugenics and
    cousin of Charles Darwin
  • Popular with politicians and social thinkers
  • Eugenics Movement formed in 1908 to
  • to improve the British race by preventing the
    reproduction of defectives by means of
    sterilization or segregation. (Barnes, 1991)
  • Medics favoured eugenics for congenitally
    disabled babies or the feeble-minded
  • They need permanent segregation, to the end that
    that kind of defective human stock may cease to
    perpetuate itself. (Goddard, 191489)
  • video

11
  • the day after I was born they took me into the
    centre of the city to x-ray me at the main
    hospitalThey discovered that my joints were
    malformed and wherever two bones meet they didnt
    do it properly and that became more obvious as I
    grew. ..within a few days my parents were told
    that I would probably never walk, probably
    wouldnt talk and that I would probably be an
    idiot, or words to that affect. And that the
    sensible thing to do would be to put me in an
    orphanage, the phrase used apparently was where
    they know how to look after children like that.
    (research participant born 1942)
  • My mum had to leave me in the hospitalbut they
    knew right away that I must have had brain
    damage It was very traumatic for my mum because
    she was young and it was her first child. She
    said that the worst thing was not that I had
    cerebral palsy but they asked her did she want to
    give me up. She said that was worse. She didnt
    know what they were on about, it never occurred
    to her but thats what they did in those days,
    they encouraged parents to give up disabled
    children. (research participant born 1965)

12
Devaluing and reducing disabled lives
  • Genetic counselling
  • Pre-natal screening
  • Selective abortion (legal to terminate impaired
    foetus right until moment of birth)
  • Ultrasound
  • Research on gene detection
  • Institutionalisation/segregation
  • Sterilisation of disabled women
  • Removal of impaired genes during fertility
    treatment
  • removal
  • Message
  • disabled lives equal wrongful lives and having a
    disabled baby is an expensive tragedy.

13
Theme 3Women, Disability, Motherhood
  • Motherhood encouraged for non-disabled women
  • Part of female identity
  • Motherhood is in our culture viewed as an
    essential part of womanhood. It is an important
    part of what constitutes a real woman. (Barron,
    1997 232)

14
  • Motherhood actively discouraged for disabled
    women
  • Disabled girls sexuality unacknowledged
  • Limited exposure to sex education and sexual
    knowledge when growing up
  • Reproductive lives are highly regulated through
  • coerced abortions
  • pressures to undergo hysterectomies
  • Temporary and permanent birth control
    (sterilization)
  • Professional surveillance and fit to be a
    parent test
  • Removal of child from parental custody

15
  • Disability and parenthood are words which seem to
    come together only uncomfortably in our society.
    The choice of parenthood is withheld from many
    disabled people through the disapproval of
    others. Through lack of accurate information and
    lack of role models. If parenthood is embarked
    upon it is often made more problematic and
    stressful because of the lack of understanding
    from professionals. The media reinforce public
    prejudice, taking little notice of disabled
    people as parents except to publicise the stories
    of children being removed from parents deemed
    unfit or the plight of young children forced into
    caring for such parents.
  • Campion, 1995

16
  • 1.1 million households with dependent children
    had at least one disabled parent (LFS 2004)
  • Disability activism and disabled parents
    networking ? resistance and resilience of
    disabled mothers
  • disabled mother

17
Questions
  • What makes a good mother?
  • Why are disabled mothers subject to more
    stringent examinations of parenting competence
    than non-disabled mothers?
  • What are the main barriers to successful
    parenting for disabled women?
  • What is necessary to support better outcomes?

18
Theme 4 The Disabled Family. Family in media
popular culture
19
Household structure
  • 1 in 4 families are affected by disability -
    disabled at different points of life course
  • 770,000 disabled children living in Britain
    (Contact A Family, 2012)
  • 99.1 (1 in 20) disabled children live
    with/supported by their family
  • Today there are more children with complex needs
    than in the past
  • Mothers more likely to be informal carers and
    mediators (Read, 2000)
  • Lone mothers head greater proportion of
    households with disabled child (Beresford 1995)

Ref Beresford., B (1995) Expert Opinions A
National Survey of Parents Caring for a Disabled
Child Bristol Policy Press
20
  • Greater incidence of marriage breakdown for
    parents of disabled children
  • My mother and father didnt get on very well so
    when I was nearly four I lived with my
    grandparents. I think it disability did
    contribute to my parents splitting up because I
    dont think he could cope with having a disabled
    child. (Catherin, born 1945)
  • from the little Ive been told it it was down
    to my natural father not accepting that hed
    created something that was imperfect. To him
    having a disability was imperfection and and he
    couldnt process that in his in his mind that
    that a daughter of his was going to have a
    disability for life. (Holly, born 1982)

21
Barriers for Disabled Family
  • Disability is
  • ...the disadvantage or restriction of activity
    caused by a contemporary social organisation
    which takes little or no account of people who
    have physical impairments and thus excludes them
    from participation in the mainstream of social
    activities. (UPIAS/Disability Alliance, 1976,
    p14)
  • Family members (spouse, parent, sibling) can
    experience
  • disablism exclusionary and oppressive
    practices at the interpersonal, organisational,
    cultural and socio-cultural levels in particular
    social contexts (Thomas, 1999, p40)

22
  • Stigma relationship of devaluation in which one
    individual is disqualified from social acceptance
    because they have attributes/ traits that makes
    them less desirable than others. In this sense
    the individual has a Spoiled Identity (Goffman,
    1963)
  • Social disadvantage we do not all have the same
    opportunities and fortune because our social
    systems favour some over other. (Graham Power,
    2004)

23
  • I hated coming home, yeah, I loved it at school
    but I was less mobile at home. Couldnt get out
    and didnt know anybody, I had no friends at
    home, and it was just so boring, you know, I mean
    I have an older brother and sister, and they were
    off out, exploring and god knows what, at the
    time, and I was just left at home with my dog and
    my Mum (Poppy as a child)
  • I was having twins, but I lost them Im still
    very angry at the midwife, because I still blame
    her. The so called typical case of disabled
    woman, first pregnancy, thats what she thought
    about it. I knew she didnt understand me well.
    I was 28 weeks pregnant, and I just didnt feel
    right, I felt ill, so I got checked out, and
    everything was fine, and I got sent back home,
    and that whole day I wasnt right, and I tried to
    ring her and she wasnt answering. What I should
    have done was just go to AE, and I didnt go,
    but I trusted her, and in the morning I started
    bleeding and I miscarried that day. They were
    born, the twins, the little girl was stillborn,
    and the boy lived for about 12 hours (Poppy as
    parent)

24
  • Helens impairment ? uses wheelchair ? stains
    carpet
  • when I was eight I remember everyone in my class
    was invited to a birthday party and I wasnt.
    And one of my friends remonstrated with the girl
    and she said I wasnt invited because her parents
    considered my wheelchair to be dirty and
    therefore I wasnt allowed in the house until I
    went to high school Id never been to any of my
    friends houses because it just it wasnt kind
    of acceptable - Helen (born 1985)

25
Disability by association and Courtesy Stigma
  • Disabling barriers affects non-disabled family
    members in different ways
  • The discrimination and prejudice experienced by
    one person may affect those related to them
  • Two brothers from one family were particularly
    aware of the barriers relating to the built
    environment which prevented their sibling from
    undertaking certain activities. Their parents
    apparently took the view that, if a particular
    place or activity were not accessible to their
    disabled daughter, preventing the whole family
    from doing something together, then none of them
    would do it. (Stalker Conners, 2004, p224)

26
  • 1. Social barriers in disabled famiy
  • Bullying name calling
  • I mean a lot of the time it was, your brothers
    thick, it means youre thick .. . when I started
    high school and no-one knew anything about it ...
    it meant even then all sorts of, like handicapped
    jokes, handicapped jokes were funny then.
    (Stalker Conners, 2004, p223)
  • Relationship breakdown (with friends, lovers,
    extended family)
  • Restricted social activities
  • Limited parental attention for non-disabled
    siblings (Burke, 2008)

27
  • Choice to evade disability identity
  • The father who left
  • Separating family life and social life
  • Excluding person with the impairment from family
    life
  • e.g. Send disabled child to institution
  • Family discriminate against disabled child

28
  • 2. Economic barriers for disabled family
  • Impairment specific diets
  • Extra heating costs and washing costs
  • Hand-made clothes and shoes
  • shoes were a mega problem for us because I
    couldnt wear just any old cheap shoes. So they
    were a real expense
  • I broke things very easily when I was little, I
    used to fall over and break my leg, or my arm or
    my wrist My parents took me to see lots of
    people to see if they could help, they always
    wanted an x-ray which would be half my dads
    weekly wages (Worton, born 1944)

29
  • 52 per cent of families with a disabled child are
    at risk of experiencing poverty
  • The income of families with disabled children
    averages 15,270, 23.5 per cent below the UK
    average income of 19,968, and 21.8 per cent have
    incomes that are less than half the UK mean
  • Only 16 per cent of mothers with disabled
    children work, compared to 61 per cent of other
    mothers
  • (survey by Contact a Family, Aug 2012)

30
Theme 5 Legislation and Policy Changes
  • Historical portrayal of disability and family
  • disabled children and families were kept as
    private issue
  • Family members were carers with no public
    support or disabled children lived in
    institutions
  • Carers were perceived as valiant and heroic
  • Disabled people were seen as a burden to their
    families, different and passive
  • Boom of thalidomide babies in 60s ? public
    awareness of disabled children and families
  • disabled baby becomes mother

31
QUESTIONS?
32
References
  • Burke, P. (2008) Disability and Impairment
    Working with Children and Families. Jessica
    Kingsley Publishers.
  • Campion, M. (1995) Whos fit to be a parent?
    London, Routledge
  • Connors, C., Stalker, K (2003) The Views and
    Experiences of Disabled Children and Their
    Siblings A Positive Outlook.. Jessica Kingsley
    Publishers.
  • Giddens A. (2008) Sociology Cambridge Polity
    Press
  • Goffman, E. (1963) Stigma Notes on the
    Management of Spoiled Identity New York
    Schuster
  • Graham, H., Power, C. (2004) Childhood
    Disadvantage and Adult Health A Lifecourse
    Framework London Health Development Agency web
    www.hda.nhs.uk
  • Shah S., Priestley M (2009) Home Away the
    changing impact of educational policies on
    disabled childrens experiences of family and
    friendship Research Papers in Education
  • Read J., (2000) Disability, the Family and
    Society. Buckingham Open University Press
  • Oswin, M (1998) A historical perspective, in C.
    Robinson and K. Stalker (eds) Growing Up with
    Disability. London Jessica Kingsley Publishers.
  • Shah, S., Priestley, M. (2011) Disability and
    Social Change. Private Lives and Public
    Policies. Bristol Policy Press
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