Disability, Families and Motherhood

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Disability, Families and Motherhood

• Dr Sonali Shah
• University of Glasgow
• sonali.shah_at_glasgow.ac.uk

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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

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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

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• 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

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• 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

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• 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.

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Different family units

• Nuclear

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THEME 2 History of disabled Childhoods
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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

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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

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• 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)

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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.

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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)

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• 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

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• 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

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• 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

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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?

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Theme 4 The Disabled Family. Family in media
popular culture
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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
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• 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)

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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)

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• 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)

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• 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)

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• 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)

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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)

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• 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)

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• 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

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• 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)

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• 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)

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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

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QUESTIONS?
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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