Disability, Families and Motherhood

1. Disability, Families and Motherhood Dr Sonali Shah University of Glasgow sonali.shah@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 : • Women’s rights – Elimination of all forms of Discrimination Against Women (CEDAW, 1979) • Children rights – United Nations Convention on Rights of a Child (UNCRC,1989) • Disabled people’s 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 people’s 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/disabilities.

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, that’s what the medical profession wants. It wants for you to look and act and be like the majority, and if you don’t fit in then it has to try and bend your limbs, and twist your head, so it’s 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, 1914:89) • video

11. … the day after I was born they took me into the centre of the city to x-ray me at the main hospital…They discovered that my joints were malformed and wherever two bones meet they didn’t 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 wouldn’t 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 hospital…but 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 didn’t know what they were on about, it never occurred to her but that’s 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 3:Women, 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 didn’t 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 don’t think he could cope with having a disabled child. (Catherin, born 1945) from the little I’ve been told it – it was down to my natural father not accepting that he’d created something that was imperfect. To him having a disability was imperfection and – and he couldn’t 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. Couldn’t get out and didn’t 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… I’m still very angry at the midwife, because I still blame her. The so called typical case of disabled woman, first pregnancy, that’s what she thought about it. I knew she didn’t understand me well. I was 28 weeks pregnant, and I just didn’t 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 wasn’t right, and I tried to ring her and she wasn’t answering. What I should have done was just go to A&E, and I didn’t 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. Helen’s impairment  uses wheelchair  stains carpet: ‘when I was eight I remember everyone in my class was invited to a birthday party and I wasn’t. And one of my friends remonstrated with the girl and she said I wasn’t invited because her parents considered my wheelchair to be dirty and therefore I wasn’t allowed in the house… until I went to high school I’d never been to any of my friends’ houses because it just – it wasn’t 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 brother’s thick, it means you’re 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 couldn’t 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 dad’s 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) Who’s 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 children’s 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