This was a qualitative study that involved 10 one-to-one interviews with mothers with a mild to moderate learning disability who were living in urban and rural areas along the Irish east coast. The study aimed to explore the informal and formal social support networks of these mothers, a topic previously under-researched in Ireland.
All mothers were either present or past clients of a learning disability service provider. Each mother had at least one child between 1 and 6 years of age. Five mothers have had their children put into foster care, in most cases immediately after birth. These mothers entered residential care soon afterwards. The remaining five mothers are caring for their children in their own homes. All mothers are unemployed and living on social welfare benefits. Pseudonyms have been used in all cases.
The following is a very brief summary of the study’s findings.
Experiences of Friendship and Informal Support
Five mothers live in urban settings, they suffered what Jill described as ‘utter isolation’. These women had no friends and no contact with their neighbours. Reasons given for this by the mothers were that when they went out, they were called insulting names by the neighbours. Those mothers who were living with their children admitted that they avoid neighbours because they had threatened to report them to the social workers. In all cases reciprocal relationships between these mothers and their neighbours appeared uncommon.
Vonne was the only urban-based woman who had plenty of friends and support, and she was also the only mother who had attended a mainstream school. Vonne said: íf I had gone to a special school all along, I wouldn’t have had as many friends outside the service.’ Middleton (1999) argues that children in special schools are labelled and categorised as unworthy and incapable, both socially and academically, which contributes to a low level of ambition, social segregation, and to feelings of low self-esteem. Available research, however, does not include adults with learning disabilities and their views on special education and possible extension of social exclusion into adulthood.
The sole source of friendship for the rural women comprised one or two neighbours who provided constant emotional and practical support. As Marianne said of her neighbour: ‘she’s really good … calls in all the time for a talk … helps me dress them up … Mary across the road babysits so I can go to bingo.’ Mothers living in residential care also derive much emotional support from one or two neighbours. Interestingly, no other mother knew of another mother with a learning disability and formal services have made no attempt to facilitate this. All mothers believed that this was an untapped resource. As Angela said: ‘The service hasn’t put me in touch with anyone in my situation … management are full of men who don’t notice or care what I’m going through.’ The patriarchal nature of services for people with learning disabilities resonates in Angela’s statement.
Feeling Powerless and the Permanency of Fostering
While mothers in the general population are assumed to be competent parents unless otherwise proven, the opposite is true for the mothers of this study. Denise, Jill, Susan, Vonne and Honor all described feeling coerced by social workers and family into putting their children into foster care. Once the fostering arrangement was established the arrangement became permanent and only Vonne has regular access to her child. This, she feels, is due to the fact that her father is a medical professional in the learning disability field. Honor entered residential care two years previously and owing to the Personal Outcomes Initiative, she has managed to establish contact with three of her five children. Honor has not established contact with her remaining children because their foster parents are very much against this. Apart from Honor, other women in residential care cite very little support from residential staff in establishing and maintaining contact with their children. Indeed, Denise said that she hadn’t seen her son in over a year, and that she had been prevented from attending a rare visit with him because she was being ‘punished for getting angry’. Denise, Jill, Susan, and Honor explained that their social workers had stopped returning their calls. It is possible that family and social workers in this study have made what Booth and Booth (1998) refer to as the mistake of false attribution—seeing all the problems that parents have in terms of their learning disabilities and therefore assuming a prospective finding of parenting inadequacy. This assumption remains firmly ingrained in a conception of individual responsibility—without regard to socially and economically created inability to discharge such responsibility. It is worth noting here that parental competence is not affected unless IQ falls below 55 (Kerr 1998). All these mothers say that they felt the foster parent’s feelings and opinions dictated whether or not they got to see their children. In contrast, in the general population all efforts are made to maintain contact between the fostered child and mother.
Mothers living with their children live in constant fear of social worker visits. Social workers appear to be viewing all problems that the mothers may have in terms of their learning disability, and not the social and economic barriers that they face. Mothers described being ‘put down’ by social workers, being told they wouldn’t cope, being told that their children and house had to be spotless at all times, and being told that unless they could heat the house adequately that they risked losing their children.
Experiences of Breastfeeding
Despite the universally accepted health benefits of breastfeeding to mother and child, all mothers explained that midwives did not allow them to do so. Reasons cited were the midwives’ reluctance to allow the soon-to-be foster child bond with his or her mother, and also a general belief among midwives that the mothers would be incapable of breastfeeding their child.
Experiences of Family Support
Apart from one father, the mothers experience good emotional and financial support from fathers. As Hannah said (smiling): ‘He is my rock … when dad is at home I know I’m safe as houses. I would never get hit.’ Apart from Vonne, the women, had suffered horrific physical and emotional abuse from their mothers and siblings, both while pregnant and after giving birth. Jill described the verbal abuse that she has suffered: ‘They called me thick, a retard, incapable of looking after my baby, a whore, a slut …. In the end I was too tired to argue and I signed the [fostering] papers.’ Most mothers also suffered physical abuse, for example, being thrown down the stairs while pregnant in a family effort to abort the baby (Honor), or being used as a punch-bag from one family member to the other (Hannah). Apart from Vonne, no family had maintained any level of contact with the mothers’ children.
All women, apart from Angela and Patricia, had been raped and physically and emotionally abused by their ex-partners [does not fit with the support offered by fathers in previous pargraph]., none of whom had a learning disability. Thompson (1998) points out that mothers with disabilities are conspicuously absent in policies and practices that aim to reduce the severity of domestic violence. Only one mother in this study reported this abuse to gardai or formal services. Jill’s statement aptly summarises the reasons why: ‘There’s no point … abuse with people like us is not seen as important … nobody would do anything. We’re not seen as sexual beings, how many women like us even wear make-up? Both Angela and Patricia have loving, supportive partners, who also have a mild learning disability. However, formal services will not allow these to couples to cohabit, as the partners have to undergo a rigorous ongoing parental ability assessment. Again, it appears that prospective parents with learning disabilities have to prove their competence, which is not the case for the general population.
Experiences of support from the learning disability community
Interestingly and in contrast to what Patricia and Angela have found with their partners, an unexpected finding of this study is the perceived stigma of parenthood among the learning disability community themselves. Few mothers have told their learning disabled counterparts that they are mothers. As Jill stated: ‘They might get jealous cuz disabled people don’t have kids, and they haven’t had the opportunity.’ Sexually repressive attitudes among sections of society and staff towards people with learning disabilities remains, and Jill appears to have made an astute observation. While the women living with their children wouldn’t rule out future romance, those in residential care feel they do no have enough freedom of choice with regards to romance. As Susan said: ‘It’s not taken seriously, but if you insist, you have to be assessed and the final decision is still not mine.’
In the setting up of a strategy, health providers must be prepared to facilitate empowerment. They can do this by assisting individuals and communities in articulating both their needs, and solutions to address those needs, by providing access to information, supporting indigenous community leadership, and assisting the community in overcoming bureaucratic obstacles to action. Such practitioners may contribute towards a process whereby communities increase their problem solving abilities.
Developing and implementing health-promoting strategies for mothers with learning disabilities requires an examination of ethical issues related to discrimination in resource allocation and issues of human rights. Throughout the world, relative wealth and poverty, gender, ownership of assets, access to work, and control of resources are key factors in socio-economic status. However, worldwide, the gap between rich and poor and subsequent inequalities in health status continue to increase. Health services inadequately address issues of poverty and health for people with learning disabilities. Instead the myopic focus of services is on disability remediation with little opportunity to participate in a wide range of health promoting strategies.
Too much on health inequalities needs more on the issues of mothers with ID
Changing the attitudes of health care providers is paramount in ensuring that services empower and enable individuals to have control over their own lives. As Booth and Booth (1998) highlight, implementing policies and practices that uphold and guarantee the rights of all people, regardless of disability status, is vital in societies that value social justice. Incorporating advocacy and ethical decision-making as central strategies in all programmes, practices, policies and research efforts affecting people with learning disabilities will address issues of equity and access and will have a positive effect on the health status of people with learning disabilities across the lifespan.