Parents with an Intellectual disability – the view from Iceland

Hanna Björg Sigurjónsdóttir and James Gordon Rice give the view from Iceland of the challenges for parents with an intellectual disability, following their research project, sponsored by a University of Iceland Research Grant…

  • Parents with an intellectual disability have had a hard time in Iceland
  • Sometimes they have lost access to their children for the wrong reasons
  • The rules are not written for modern times – they are not consistent
  • Parenting groups have helped them to improve the situation for themselves
  • Older children can also provide support to their parent.

It is well known that disabled parents, especially parents with ID, are having their children removed from them at a much higher rate than other parents. The evidence used to support custody deprivation (in the absence of any solid evidence of neglect or abuse, which of course does happen) will often draw upon mundane events and observations from everyday life that become distorted, exaggerated, misinterpreted or given an unwarranted significance. This type of practice initiated the study we want to tell you about.

Hanna has been working with parents with ID for over twenty years as a researcher and advocate. Some of the parents she has known for a long time, while others she has more recently come to know. In 2002, a young father with ID sought her help to enable him to establish a parenting group. The couple’s first child was removed at birth. The grieving parents felt alone and needed a place where they could meet other parents in similar situations to share their experiences and support each other. Hanna contacted all of the parents who had participated in her research on families headed by parents with ID since 1994 and introduced this idea to them. Most of the parents showed up for the first meeting.

The parents who decided to stay formed the parenting group that has continued to meet up to the present day. Some of them became strong self-advocates. The oldest parents in the group are no longer afraid that their children will be removed. The couple who lost custody of their child at birth kept their younger children who are now teenagers. The oldest parents have grown-up children themselves, and some even have grandchildren. The parents in this group continue to meet because the group is of huge importance to them. New parents have joined the group – parents who are scared that their children will be removed and others who have lost custody of their children. The older parents welcome the younger ones to the group. They haven’t forgotten how it was when they were in that situation.

When the parents meet they share their stories. It is important to know that you are not the only one going through these difficult experiences. A few years ago, one of the young couples brought a written report to the group with the results of a parenting assessment. In this assessment, a practitioner noted her observation of a parent’s home, which included the fact that there was a cat on the bed and there were fingerprints smudges on the window. Hanna went to her colleague James who scratched his head and repeated “there is a cat on the bed and smudges on the window – so what?”

This was the beginning of our research collaboration and our study project which started in 2014, which uses court data to understand the connection between disability and the removal of children from disabled parents. Through our close and careful readings of the court documents we have learned how everyday life takes on additional significance if you are a disabled parent under an active investigation for suspected abuse or neglect. Some of this so-called evidence is so ridiculous that is has become an inside joke for us. The prejudice coming from the child protection system that we see in these documents angers us so much that sometimes you need to make a joke about it.

Coming to Hanna’s home to work on the project James would say ‘hrm, Hanna, as I look around your apartment, there are signs of fast-food; the dishwasher is full of dishes; there are electric cables on the floor, child protection won’t be pleased’. All of these are examples taken from real cases. As a middle class professional who often takes care of her grandkids, James’s observations of Hanna’s home will probably not show up on a report, while this could be evidence used against a parent, especially a disabled parent, under active investigation. In our data, we have read about mothers with ‘no make-up’, a teenage girl in torn trousers, a child with little appetite, a baby with earwax and this kind of thing. This sort of information finds their way into the case data and just sits there without context or explanation. In reality, this information does not tell us anything and is therefore meaningless without context, yet it gets repeated again and again. Information like this can easily label parents as ‘unfit’.

This kind of information can have more than one interpretation. In Iceland today, torn clothing is fashionable for teenagers. The child who has no appetite in school was also taking medication, which has a side effect of reducing appetite. These comments and descriptions do not seem to have any other purpose but to cast the family in a negative light. For example, a comment that the outside trash bin was full and badly smelling has nothing at all to with the parents or their parenting ability, as it is the responsibility of the municipality to empty bins.

Often we see negative descriptions of homes on the basis that are not up to middle class standards. Even positives are often given negatives twists. For example, the homes of these parents may be clean but are also ‘chaotic but clean’ and there are parents who are criticised for doing too much laundry, or using too many pots and pans while cooking. It doesn’t matter how the home is or what the parents do: they will always be in the wrong when the parents are observed through a narrow middle class lens or the personal views of child protection officials. The curtains are the wrong style, lights are not right, the children have too few or too many toys, parents spend too much time on the computer etc. There is no way to win for these parents. In one case, a mother’s appearance was criticised for coming to an interview wearing sports clothes and no make-up. We wondered what would have been said about this mother if she had appeared with makeup. Would it be written down? Would it be used as an example of a mother who takes pride in her appearance? Or would it be used as an example of a mother who sets her own needs first and ‘wastes’ money?

In all the files reviewed, we have noticed that even though child protection may base their case on a parent having ID, they seem to lack an understanding as to what it means and what to do about it other than suggesting removing the child. One of the most common accusations in the cases reviewed is that parents will not be able to assist their children with their homework because of their disability. A mild intellectual disability means having some limitation in learning, reasoning and problem solving, and it is expected that helping with homework may be difficult, especially as the child gets older. It is not clear why this matters and it should not be routinely used against parents, but it is. Professionals in Iceland educate children from very young ages, and support programmes are in place to help children with homework. Instead of using these biomedical labels to recognise that parents need support, they rather seek ways to support families. However what is offered rarely seems to be adjusted to meet the needs to support parents who have an ID. All too often, the implications of their impairment are ignored and parents are provided with inappropriate support – even sent to a complex parent training programmes not intended for parents with ID. When parents struggle to make use of inappropriate support, this can be used as further evidence of their so-called incompetence.

Knowing the parent has an ID seems to create ‘tunnel vision’ or a story that disabled parents are not good enough parents and will never be. The biomedical label of ‘intellectual disability’ seems to be used to suit the needs of the system, not to look for ways to support parents and to keep families together. In all of the analysed cases, the voice of the parents is ignored. Professionals may claim that ‘all support measures have been tried,’ as they often write, and their views are taken at face value and accepted by the courts. No one doubts the professional – all of the blame being laid at the feet of the parents with their impairments.

When parents appear in these cases, they often explain very well and clearly their frustration about the number of people coming to their home – at times of the day that suits the system rather than the family. Often the advice given by one official contradicts the advice given by another. When parents rightly complain about this, they are labelled as ‘difficult’ and unable, or unwilling, to accept advice and co-operate with the child protection system.

The parents were encouraged to trust the workers welcomed into their homes and lives. But they also read in reports how they are negatively described by the workers they are supposed to trust. Everything parents say and do is under scrutiny and when parents reach their limit and say ‘I can’t take this any longer – I don’t want your support, I don’t want you in my life’, in all likelihood the investigation and support phase of the case has already moved into the custody removal phase. You are no longer just a parent with an intellectual disability; you are also now non-cooperative, difficult and won’t accept support. Once this stage is reached there appears to be little parents can do to prevent custody loss. The case goes to court where nobody questions the treatment of the families described above. The story goes that the parents had the opportunity to improve, but failed in spite of all the good work done by the system. The reasons for failure are easily explained by the system as the result of their low IQ and personal qualities.

To end on a more positive note, in our experience parents who are well-informed and band together, forming parenting groups, seem to be more protected and successful in maintaining custody. Children, especially older children, also play an important role in supporting their parent. Child protection services appear to be more cautious when their work is scrutinised. Researchers have a role in looking at practices that can be improved. Waiting to defend custody proceedings at the court stage is unlikely to work; parents need to form support groups at the early stages of the investigation to ensure their voice is to the forefront and is listened to. Parents, especially those with ID who are single, have few friends and perhaps little or no support from their families, can be vulnerable in proceedings taken by Child Protection Agencies. We need to work together to protect families from abuses of the system, through sharing stories, research findings and parents’ support groups.

Icelandic AuthorsHanna Björg Sigurjónsdóttir is a Professor in Disability Studies at the University of Iceland. Much of her research has focused on families headed by parents with intellectual disabilities and their children.

James G. Rice is an assistant professor in anthropology at the University of Iceland, and has been a member of the Centre for Disability Studies at the University of Iceland since 2008. His research focuses on numerous issues involving disability and power.