Being a parent, for disabled people, is and always has been a right, as much as it is for any other person. However, parenting as a role for disabled people used to be controlled through the practice of sterilisation, abortion, and imposed ignorance. Increasing numbers of disabled people at the end of the twentieth century chose to become parents but "in doing so they often face negative attitudes, inaccessible environments and inappropriate support," as Meg Goodman observed. Being a disabled parent in the twenty-first century is slowly starting to improve but unfortunately disabled parents are still sometimes met with discriminatory attitudes both by professional organisations, and by the family and friends of the disabled parents themselves. This shows that having rights does not immediately equate to positive attitudes from society or adequate services being provided. The role of disabled parents today, therefore, involves not only the usual challenges of raising children, but also the fight for adequate support services and preparing their children to face discriminatory attitudes.
The 1970s saw the beginnings of change in the social perception of disability through the advent of the Union of the Physically Impaired Against Segregation in 1976. Political activism during the 1970s and 1980s culminated in 1990 with Michael Oliver’s ‘The Politics of Disablement’ which defined ‘The Social Model of Disability’. This model states that disability and dependency are caused by an oppressive society where disabled people are not the victims of a medical condition or accident, but as the collective victims of a discriminatory society. Theorising disability per se remains a contentious issue but the social model is the preferred way of understanding disability used by many disabled people’s organisations in the UK - that society needs to change, not the disabled person.
The rights of disabled parents and their children are dependant upon the large-scale recognition of disabled people’s rights. The 1995 Disability Discrimination Act has brought the social oppression of disabled people into the public eye through the outlawing of discriminatory treatment of disabled people in employment, in public places and in the provision of services. It can be argued that the Disability Discrimination Act does not at present go far enough to fully integrate disabled people into society but it continues to be updated in line with disabled people’s needs in all aspects of social life. A society that has to abide by these laws must also be provided with education so that commonly held assumptions of disability can be understood.
Parenting should not be perceived then as something that cannot be done just because a person is a wheelchair user, is deaf or visually impaired, is a mental health services user or has learning difficulties; women of all abilities should have a choice of whether or not to have children. Organisations such as The Joseph Rowntree Foundation, The National Childbirth Trust, Disability, Pregnancy and Parenting International and Disabled Parents’ Network have highlighted the discriminatory attitudes of society towards disabled parents and have been instrumental in supporting research into their needs. Having the right support from health and social care professionals, as well as from family and friends, should mean that children of disabled parents should neither feel stigmatised; nor be seen as ‘carers’. Recognising the value of difference, and breaking down discriminatory barriers will by default allow disabled people to be perceived, and perceive themselves, as valuable citizens, and ‘good enough’ parents.
Research into this area by Thomas has revealed that ‘disabled parents can (and do) do it too’ and it has also identified that the ‘real’ experiences of disabled people are important considerations if acceptable support services are to be established. Disabled parents, and their families, must be viewed holistically with the services they need being accessed through appropriate channels over which the disabled parents themselves have choice and control. Ownership of power and control is fundamental to autonomy and independence and disabled parents need to be consulted and included in decision making as partners. Promotion of parental autonomy would - as Morris observes - certainly support the “government… policy that children’s well-being should be promoted, wherever possible, by providing support for parents”.
Direct payments have, for some years now, been provided by social services to disabled people so that they may employ their own personal assistants for personal care. Research into disabled parenting has helped establish and implement new legislation for disabled parents to apply for direct payments purely for their parenting needs. This is a great decision that not only helps protect the rights of disabled people to be parents but also gives them the control over who will support them in their parenting role.
A personal footnote
As a disabled parent I have brought my children up to recognise that all people are different and that there is no such thing as ‘normal’. They know I cannot run round with them but I am fortunate in that I can sit and spend time with them; a luxury that many non-disabled parents can ill-afford due to the pressures of work. My children have learned not to take the environment for granted and can think about the needs and difficulties others may have due to the inadequacies of society. They are, however, first and foremost children. They can be demanding and selfish, sometimes still leave shoes and toys in my way and ‘forget’ to pick up their clothes. Nevertheless, they have learned that me having a personal assistant does not mean she is either a maid to them or myself. Like their friends and children in most homes in the Western world my children are expected to contribute and be responsible and respectful of everyone in the house, with the usual degrees of success.
I believe that prejudice is not inherent; it is a construction that can be thought about and changed. When my first child was young I helped out in his school and felt that I was helping to ‘break down barriers’ just by being in my wheelchair, talking to the children and the teachers, and answering their questions. I still believe that the time for raising awareness of disabled people’s oppression is when children are being educated, both formally at school and informally through books, films and TV. This and the full inclusion of disabled children into mainstream schools will pave the way for integrated disability awareness. This will make the young children of our time the socially responsible adults of tomorrow.
Goodman, M (1994) Mothers’ Pride and Others’ Prejudice. London. Maternity Alliance
Morris, J (2003). The Right Support: Report of the Task Force on Supporting Disabled parents in their Parenting Role . York . Joseph Rowntree Foundation
Oliver, M. (1990). The Politics of Disablement. Basingstoke, Macmillan
Thomas, C. (1998) ‘Becoming a mother: disabled women (can) do it too’, in MIDRS Midwifery Digest, vol. 8, No. 3, Sep. 1998, pp275 –278
UPIAS (1976) Fundamental Principles of Disability. London. Union of the Physically Impaired Against Segregation