Thursday, September 21, 2017
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The United Nations Convention on the Rights of Persons with Disabilities sets out clear rights for people with disabilities and family planning, but Irish law is not in line with the Convention, suggests Sandra McCullagh.

  • Article 23 of the UNCRPD sets out the right of disabled people to marry, have families
  • People with disabilities have not traditionally been seen as sexual beings
  • Irish law is quite controlling of people with disabilities and sexual relationships
  • Women with disabilities are often seen as eternal children and have their reproductive health controlled or regulated
  • Irish laws relating to reproductive health in general are not in line with United Nations treaties

Article 23 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) focuses on respect for home and family. The Article reaffirms the right of persons with disabilities to marry and have a family, to have access to reproductive and family planning information and education and to have the means to exercise these rights. Both the UNCRPD and broader women’s rights treaties reaffirm the right of women with disabilities to decide on the number and spacing of their children. (The word ‘woman’ is used throughout the article for the purposes of brevity. The author also acknowledges that reproductive issues impact on transgender people).

Acknowledging the right of people with disabilities to marry and have children means acknowledging that people with disabilities are sexual beings. The history of disability and sexuality in this country is a sorry one. Forced sterilisation, the absence of sexual education, outdated laws controlling your sexuality (see the now repealed Criminal Law (Sexual Offences) Act 1993) , having your children removed from your care without first being offered supports; these are all part of the characterisation of people with disabilities, and in particular, people with intellectual disabilities as asexual or ‘eternal children’. (You have little chance of finding a condom machine in an accessible public bathroom, but hey, disabled people have no need of such things, right?).

Controlling the reproduction of women with disabilities

Throughout history, women with intellectual disabilities have been viewed as a problem when it comes to sexuality and reproduction. Trent, writing in 1994 called women with intellectual disabilities “the most serious threat to society”, and their fertility something that had to be ‘dealt with’. Non-consensual contraception and forced sterilisation have been employed with the aim of preventing conception. These practices continue to be used in many countries around the world, despite a litany of human rights committees and conventions explicitly declaring them to be human rights violations. The Committee against Torture, the Committee on Economic, Social and Cultural Rights, the Committee on the Rights of the Child, the Beijing Platform for Action and others have criticised States’ parties on this issue.

Women with intellectual disabilities experience multiple barriers to the enjoyment of good sexual and reproductive health. These include a hesitancy among service providers to provide information, limited exposure to sex education, a higher prevalence of sexual abuse, under-treatment of menstrual disorders, lower rates of screening, legal and systemic barriers and a general denial of their right to consensual sexual expression.

When women with intellectual disabilities become mothers, there is little support offered. While societal attitudes towards intellectual disability have changed over the past decades, supports for women with intellectual disability in pregnancy and motherhood remain mostly absent.

In Susan Doyle’s article that follows this one, the difficulties that parents with disabilities experience in childcare proceedings are illustrated. Despite the substantial body of evidence indicating that maternal IQ is not systematically correlated with parenting competence, and that parents with an intellectual disability can adequately care for their children, given appropriate support, negative attitudes towards women with disabilities having children still prevail.

While parenting with a disability can be fraught with issues, choosing to terminate a pregnancy is perhaps even more contentious. Some commentators have suggested that there is an inherent contradiction between abortion rights and disability rights. They point to statistics from some countries that indicate very high rates of termination where Down Syndrome has been identified. Such statistics are indeed worrying, and are symptomatic of a society that does not value the lives and worth of people with disabilities.

The answer to this is not found in limiting the rights of women (including disabled women). Denying women the right to make decisions about their own bodies will not result in a better society for people with disabilities. Writing in the Irish Times in 2015, Rosaleen McDonagh, who describes herself as a feminist with a disability, claimed that disabled feminists are “caught between being pro- or anti-abortion”. In her article, she referred to the use of disability rights by anti-choice groups as “manipulative and exploitative”.

The vast majority of the discussion around abortion and disability tends to focus on non-disabled women, and most often ‘disability’ only enters the conversation when the focus is on pregnancies where there is a diagnosis of a ‘foetal abnormality’. Focusing on non-disabled women feeds into a narrative that denies the sexuality of women with disabilities. There is a lack of acknowledgement of disabled women, their particular experiences of being pregnant in Ireland, and how Ireland’s abortion laws affect them.

In fact, as well as side-lining the needs of women with disabilities in the debate, the focus on foetal abnormality as a ‘legitimate’ reason for abortion also serves to reinforce the idea that disabled lives are of less value. The notion of justifiable reasons for abortion (disability, rape or incest being the most commonly cited) also reinforces the idea that women’s decisions on their reproductive lives should be open to interrogation by society. No woman should have to justify her reason for terminating a pregnancy beyond it being the right choice for her.

Moving beyond choice

In reality, women’s reproductive choices are shaped by the social contexts within which we find ourselves, where inequalities in power and in social and economic conditions influence our decisions. Access to supports and services, financial resources, and family circumstances all influence the choices women make.

Our understanding of what it means to raise children with disabilities is shaped by social and cultural attitudes, and by stigmas and stereotypes. It is influenced by the stories we hear of the dire situation in which families find themselves when they cannot access the necessary supports and services.

We need to recognise the role that such factors play in reproductive decision-making. All women should have the right to make their own reproductive choices. But choice alone cannot be the end goal. We must ensure that women are supported no matter what that choice is. Reproductive rights must encompass the right to end a pregnancy but also the right to have a child, to be supported to do so, and to have the social and economic resources to have a family. Abortion rights should go hand in hand with sexual education, accessible and affordable contraception, pre- and post-natal care, childcare and a range of community-based health, social care and disability-specific supports to enable women to raise their children well, no matter what their support needs.

The role of women with disabilities in the debate

Efforts have been made by pro-choice groups in recent years to adopt an intersectional approach and to be more inclusive of the experiences of a diverse range of people, including women with disabilities, ethnic minorities and trans men and women.

Speaking at the March for Choice in September 2016, Rosaleen McDonagh spoke eloquently of her experiences as a Traveller and disability rights activist:

“As a Traveller woman, many of us have been in very precarious situations. In our relationships with the law and the Department of Health, we have often been pushed around or ignored. We are not considered ‘important’ women…we have stood on the side-lines of feminism for too long…Irish feminism and pro-choice has to broaden and consider voices who are learning the language of liberation”.

It now seems certain that there will be a referendum on abortion in 2018. It is vital that a broad spectrum of women, including women with intellectual disabilities, are supported to engage in the conversation.

This means hearing the voices of women with disabilities. It means being open to challenge where our language around, or pre-conceived ideas of, the lives of disabled people, results in stereotypes being perpetuated. We must ensure that in our efforts to secure reproductive rights for all who need them, we do not devalue the lives of people with disabilities in the process.

We must ensure that the choices we want people with disabilities to have, in all aspects of their lives, extend also to making choices with regard to their own reproductive lives. Referring to her experiences as a woman with a physical disability, Louise Bruton put it so succinctly: “My body is my body and I don’t want that to change just because I’ve moved from the orthopaedic ward down to the maternity ward”.

Author Bio

Sandra McCullagh is an Advocacy Project Worker with Inclusion Ireland’s Campaigns and Policy Team. Sandra coordinates Inclusion Ireland’s research activities and supports the development of policy. Sandra holds a Masters in Social Justice and Public Policy from DCU.

From a Service perspective what would make a difference?

  • People with Intellectual Disability have a right to become parents
  • That right brings a responsibility to accept support and help where needed
  • Services should provide support where gaps exist and everyone should work together
  • Assessments should highlight strengths
  • All parents need help.

When people ask us as what we do as workers in services for people with Intellectual disability, in general we explain our role as ‘supporting’. That’s what we do; we support people in every area of their lives, ‘from cradle to grave’. We want people to do normal things, to attend school, to socialise, to work, and overall to participate fully in their communities.

When it comes to supporting people to parent however, it’s a bit different. Expectations and attitudes change, fears take hold and somehow we become less enthusiastic.  Every agency that supports people with ID advocates the fundamental right of people to become independent, to take risks and to make mistakes. However, when people we support want to, or become parents, this philosophy inadvertently becomes less prominent and invariably moves to a culture of child protection, restriction and risk aversion.

Many years ago, we had experience of working with a couple both of whom had ID. Like many others, they had contact with services as children but ‘drifted’ away as adults. Almost ‘despite’ services, they had a family, but over time came to the attention of the HSE’s child protection team, now TUSLA. Their children were taken into care, and the only opportunity for contact was through weekly access. We were asked by TUSLA to help the parents seek ‘training and employment’ opportunities so that they might become better role models for their children. The parents’ overwhelming need was to be reunited with their children and they consistently asked one question “What must we do to have our children back?” Consistently TUSLA’s response was “demonstrate competency”.
So we agreed to support the parents to learn parenting skills using a multidisciplinary approach involving Social Work, Psychology and frontline Social Care Workers. We helped them practice, to role-play, to model, to anticipate, to plan, and to reflect but their only real opportunity to ‘demonstrate’ was their weekly access visit. This two-hour ‘window’ became the sole opportunity and a microcosm for the parents to show their competency and learning. Over time however, each access visit became a test, observed and assessed by TUSLA childcare staff. Despite the intensive support before and after, each access visit became a disappointment, a failure to demonstrate the necessary competency and eventually, over time, they lost heart.
In one sense, these parents were lucky – lucky that they got good legal support to decipher a most complex legal system; in retrospect, it was never going to work. Weekly access with small children is an extremely emotionally charged event for all concerned, and any parent would be challenged to demonstrate the required skills, especially under the watchful eye of well-meaning child protection staff. In such an environment, it is difficult for competency to flourish, but the expectation in the first place was unrealistic and essentially flawed. The parents did not have support during the access visit and therefore inevitably they struggled.

As with all the people we support, we fill gaps with natural, paid and volunteered support that helps people function and live the lives they choose. Assessing people without these supports is similar to assessing someone with a physical disability without their wheelchair.
More importantly, it could not work because of the conflicting responsibilities that exist between us, as workers in a Voluntary body and those in a child protection agency.

Although we all share a child protection mandate, our mission is to ‘enable’ the parents requiring opportunity, and opportunity creates risk. This inevitably looked like we were willing to compromise child welfare and created an understandable and ongoing conflict with TUSLA’s responsibility to protect and effectively ‘police’ such cases. The risks were too great, and while we could minimise them, we could not eliminate them. In the general population, we get an opportunity to learn somewhat ‘on the job’ when it comes to parenting, with timely advice from family and friends. People with ID learn better when training is ‘on the job’, but this facility is often denied parents with ID because of the risk involved with children.
More recently, we had a role in supporting a lone parent mother with ID. Although her siblings received supports from us, this mother had lived very independently. Her pregnancy evoked an understandable concern from her GP and a referral to both our agency and Child Welfare.  On this occasion, we hoped to keep mother and child together and work with TUSLA to create a model that would safeguard both mother and child. We formed a good working relationship with involved parties. So, what could be done differently this time?

From early pregnancy onwards, we supported the mother to attend pre-natal appointments, explore housing and income issues and family support availability, and to consider the responsibilities and challenges that go with parenting. Mother was extremely receptive to support and aware that child welfare may have concerns. Her parents were not in a position to help for various reasons.  Ideally, she wished to live with her baby in a council house located between her father’s home and that of a very supportive neighbour, who had been a support since childhood. She was also willing to consider an extended family support option. These were considered at inter-agency meetings with TUSLA, and it seemed like a good support foundation was developing between agencies. Importantly a sense of ‘trust’ existed. However, a premature delivery prompted an emergency response, a voluntary care order, and suddenly mother and baby were placed in a temporary fostering situation.

A lack of foster families meant the mother had to live away from her local community. Significantly, however, she was accommodated with her baby in the foster home. We advocated that this foster family would become a supportive learning environment, where mother and baby would be considered as a unit. TUSLA agreed. Mother’s wish to live alone with her child seemed to have real prospect provided we could develop appropriate supports. Once again however, we were presented with the familiar challenge, ‘demonstration of competence’.
Proving competency became difficult. Tensions developed between the natural mother and the somewhat older foster mother, with the former contending that she was not given sufficient opportunity to demonstrate her ability. The foster mother on the other hand suggested that there was a lack of motivation from the natural mother. Again, TUSLA began to assess mother’s competence, without support, in the foster home.
The aforementioned and understandable conflict between our role as parent advocate and TUSLA as child protector began to reappear. In an effort to ‘neutralise’ our role, we prompted mother to engage the National Advocacy Service who allocated a personal advocate.
As a pilot and by way of advancing mother’s wish, we reached agreement with TUSLA to allow mother and baby move to one of our residential houses one weekend each fortnight. The house was staffed by women who had young children themselves. A different perspective began to emerge and staff reported positively on mother’s capacity to parent with support. Gradually the supportive neighbour became involved and began to replace staff. Real possibility began to exist, until suddenly a child protection concern arose and a breakdown of trust occurred between mother and the concerned neighbour. The project came to an abrupt ending.
When we support people in other areas, for example in employment or a new activity, we accept the risks involved as a learning opportunity. Parents in general also take calculated risks with their children in order to promote growth and independence. Understandably, child protection agencies are extremely cautious about risk with children in care. It is this reality that ultimately brought this pilot into an abrupt ending, as child protection services are naturally conditioned to be risk-averse.
One last possibility would have resembled the traditional residential care model where potentially, mother and child would live in a house supervised by care staff.  This however, was deemed inappropriate by TUSLA as staff consistency could not be guaranteed and therefore against the child’s best interest.Today the fostering situation remains the only reliable option despite mother’s protestation.
This environment, while providing security for the child, continues to evoke mother’s concern that she is not given sufficient responsibility in parenting, and consequently she experiences disincentive. The foster mother on the other hand continues to report disinterest on mother’s part. Both are valid but there is inevitability about mother’s apparent apathy arising from the vicious circle in which she finds herself.  She has no goal, no incentive and no realistic prospect outside foster care. Inconsistent staffing in TUSLA’s Social Work departments adds to her plight.

Tim Booth, former Professor of Social Policy at Sheffield University, has spent a career researching the challenges facing parents with ID. He refers to the failure of services to bridge the support gaps that exist for parents with ID and suggests that professional practice and service organisations undermine such parents and heighten their vulnerability. Booth extensively highlights the same key factors we encountered. These include:

  • Presumption of incompetence relating to parents with ID
  • Focus on Deficiencies
  • Provision of confidence-inhibiting support
  • Lack of trust
  • Crisis-driven services
  • Child-centred focus, and
  • Poor assessments and lack of goal clarity.

The concept of ‘good-enough’ parenting implies an acceptance that nobody is the perfect parent. Parents with ID may well argue that this principle does not apply to them, especially when they come under the microscope of child protection services.  In fact, as Booth suggests, there is a risk that parents with ID are asked to demonstrate a level of competency higher than that expected of parents without ID.

Going Forward
Ironically, as they become adults the children in the above case are returning to their natural parents after care. While in itself this is not an indicator, it adds weight to the suggestion that we should be compelled to create a successful care model where agencies work together to create agreed missions. Legal support, although available to parents with ID, is often complex, difficult to interpret, and directive. A ‘mediation’ model similar to that which exists in family law, where parties are encouraged to work towards agreement, could facilitate better outcomes.

Parents with ID can successfully parent children with support. This we know. Many of these parents are not connected to ID services, and cope well with support from extended family for example. The notion that an ID agency and a Child Protection agency can ‘marry’ their respective mandates to provide a trusting nurturing environment, without facilitation, is unrealistic. Facilitation should focus on the substantive conflict that results from differing philosophy, and the emotional conflict arising from workers’ fears.

Booth points to research indicating that between 60 and 80 per cent of women with mild ID wish to marry and have children. The Assisted Decision Making (Capacity) Act 2015 will undoubtedly generate support for that right and provide a better culture and spirit, but a successful model demands shared ownership where all parties have child protection at the core, and a shared obligation to fill support gaps towards realistic ‘good-enough’ parenting.

Parents are encouraged to engage with all services from the outset, but they do this with the understanding that it is for purposes of support. The dilemma for the professional in the Voluntary body is that the child welfare/protection mandate that all the services are bound to, quickly becomes the dominant concern.

Booth promotes further research indicating that parents with ID can successfully raise children. We know they can, as many of us who have been working in services for a long time know children who attended special schooling in the past, who are now competent parents sometimes with very little support.

The current fostering model and training appear insufficient to meet the needs of both parent and child, and this would need consideration.

Reference:

Booth T. – Representing Children, Vol 13, No 3, pp 175-188

Author Bio

John ArmstrongJohn Armstrong is a Social Work Team Leader with the Brothers of Charity Services in Roscommon having joined the services in Galway in 1981.

  • Everybody has the right to a relationship
  • Relationships need time, trust and responsibility
  • Services and family have to help and support
  • Adrian tells us about his happy and loving life with his partner

People with Disabilities have a right to have a sexual relationship like everybody else.

The relationship should not be made a big issue because this about the both people in the Relationship and not family or Disability Services.

There needs to be trust between the people with disabilities who are in the relationship, and their families and disability services. But if the relationship is stopped or tried to be stopped, the relationship will continue in secret so it is better the relationship is out in the open with the support of family and disability services.

If family accept the relationship, so should disability services and respect the family and the person with disabilities’ decision because at the end of the day, the disability service works for the person with a disability not the other way around.

The people with disabilities who are in relationship should sit down with family and the disabilities services and talk about the right support and the rules when they’re in their services around relationships.

By the right supports and the right information like information on sex and how to have protective sex being given to the people with disability, the relationship will work out.

Like my relationship with my partner Emily who I met on a course in a disability service 5 years ago now.

When we first got together the Disability Service and Emily’s family tried to stop us having a relationship not only because both of us a have an Intellectual disability but also Emily’s family and the disability services thought Emily was naiver in the world of relationships then me which was untrue. That was the view of both families and the disability services at that time.

We both learned from each other along the way, and are more in love now than when we first started to go out together.  But both Emily and myself (Adrian) proved them wrong and the both families accepted the relationship.

When it came to the sexual part of the relationship we both took our time and did not rush and have both learned through the experience, and also that sex is not the glue that holds us together it our love and respect for each other that does.

As for the disability service, they did not accept the relationship and continued on trying to break us up, but both myself and Emily went to see the manager of the service who gave us their backing and under certain conditions, like we could not kiss or hold hands when on the course, or if we were in the same room during the Course, we could not sit beside each other when we were working which was fair enough.

It is two years since we left the disability service we both attended after we finished our course, and have moved on.

Most importantly, we are still together and very much in love and are planning to get a place together in the future when we both get employment.

This story is for Emily by your partner Adrian Noonan.

Author Bio

Adrian NoonanAdrian Noonan is a Disability Self Advocate/Peer Advocate. He is P.R.O. of Seasamh, the Inclusion Ireland Self-Advocacy sub-Committee, and also of The National Platform of Self-Advocates.

Deirdre Corby has sent in details to Frontline Magazine Ireland of a new programme launching in Dublin City University for people with an Intellectual Disability and others with in the field…

The School of Nursing & Human Sciences, DCU are launching a new programme in the area of relationships and sexuality for people with an Intellectual Disability.  It is open to all stakeholders working in the field of Intellectual Disability and is a graduate certificate course that aims to provide knowledge which is appropriate, accurate, evidence-based, up-to-date and free from discrimination, gender bias and stigma.  We are now accepting applications.

https://www.dcu.ie/prospective/deginfo.php?classname=DC675

Author Bio

Deirdre Corby PhD. Is a lecturer in Intellectual Disability Nursing at DCU.