Independent But Alone? A Story of Discrimination and Ableism within the Icelandic Child Protection System

Methods and Analytical Approach

The second co-author received an email, in May 2021, from Ágúst, who hoped to bring further attention to the case. It read as follows:

Good day Hanna, Ágúst Fannar is my name. I am dealing with child protection most days and as a disabled parent I feel the prejudice within the system. I don’t know why I am sending you this mail, I just wanted to send it to you as I know that you specialise in cases like this. I have undergone 3 custody assessments and none of them speaks about what type of support I should receive. It seems to me that none of the psychologists have knowledge of disability rights. Now I am going through the process of custody deprivation and most of the data are built on lies. I will never stop this fight.

This led to research on the case as part of an existing project,² in the course of which Ágúst and his mother were interviewed and documentation Ágúst brought with him was analysed and discussed, and which later led to regular email exchanges and meetings with Ágúst, as events progressed. However, when the case wound its way into the court system, the research shifted to a more collaborative-activist framework. For example, at one point, the second and third co-authors, along with another colleague, drafted a brief that was used by Ágúst’s lawyers to challenge the creative argument from child protection’s lawyer that Ágúst should not benefit from the protections of the CRPD because he was ‘not disabled in the sense of the law’. This argument was based on the fact that he had not been assessed according to a number of disability-specific evaluations that were not relevant in his case, such as, for example, his never having the need for a disability pension or for support to transition from a group home. While this brief and some academic publications were used by Ágúst’s lawyers, we decided together that there was some value in simply telling Ágúst’s story to a wider audience, as well as co-producing academic knowledge for use in classrooms, in conferences in Iceland and abroad, and in publications such as this. Ágúst provided the descriptions of his experiences, the details of which were cross-checked against the documents in his possession. We viewed these documents together and discussed their implications, and out of this process collectively settled on the thematic analysis.

We are putting this latter endeavour into the framework of what some have called inclusive or collaborative research (Björnsdóttir & Svensdóttir 2008; Johnson 2009; Walmsley 2004). Atkinson and Walmsley (1999) and Stalker (1998), among others, noted that people with intellectual disabilities (ID; ‘learning difficulties’ in the UK) have traditionally only received interest from researchers working from within bio-medical or psychiatric perspectives. Prior to this time, all that existed of the lives of people with ID were ‘biographical fragments’ (Atkinson & Walmsley 1999: 203). It was only during the final decades of the 20th century that researchers came to take seriously the views of people with ID and to recognise that these individuals are ‘the best authority on their own lives, experiences, feelings and views’ (Stalker 1998: 5). From a methodological point of view, ‘inclusive research’ refers to research that is emancipatory in nature (undertaken in light of the interests and directions of disabled people themselves), as well as participatory (with disabled people involved as equal partners in conducting, analysing, and writing up research). However, Atkinson and Walmsley (1999) expressed concerns that the biographical or autobiographical accounts of people with ID of which they were aware at the time tended to dwell on oppression, vulnerability, and powerlessness in the face of governmental agencies, such as child protection, asking: ‘Would people want to be seen this way? Is this the representation they would choose?’ (Atkinson & Walmsley 1999: 212). By contrast, inclusive research, based on a partnership with disabled people as active co-researchers and authors, can help to mitigate these concerns to an extent. ‘Victim stories’ need not be disempowering if they are intended to speak to very real experiences and power relations, with the intention of providing criticism and raising awareness. There is power in telling one’s stories, even if the subject matter is not always pleasant.

Strnadová and Walmsley (2018) have expressed a measure of caution about the state of the art of inclusive research in recent years, as some research that claims to be inclusive is not necessarily so. We do not claim to be doing anything unique or original here, but in light of Strnadová and Walmsley’s criticisms, we consider it to be important to be clear about our methodology. This contribution is a collaboration between the parent, Ágúst, and the two academic co-authors. After the initial research phase, Ágúst and the two other co-authors met on a regular basis to discuss what was going on in the case, review any recent documentation or updates, and simply to just be together in what Ágúst came to refer to as our ‘tea parties’. In late 2022, there was a call for abstracts for the conference of the Nordic Network on Disability Research (NNDR) to be held in Reykjavík in May 2023. There was also a call for papers in the special edition of the SJDR, of which this contribution is part. We agreed to do a presentation at the NNDR conference as well to promote the special edition and, further, that it would be a collaborative presentation between the three of us. We then discussed what the content should be, and based on that conversation the second and third co-authors sent the first co-author written questions, the replies to which were translated into English to form the basis of both the presentation and the later paper. The first and third co-authors presented together at the NNDR conference, with the latter handling the academic framework and the former the important parts of his story. After taking into consideration the comments and questions raised during the conference presentation, a draft article was made, which was read and reread, and commented upon by all three co-authors, by email and in in-person meetings. The initial words and ideas of the first co-author are his own, translated from Icelandic into English by the second and third co-authors, who also handled the academic framework and the editing and submission process in what ultimately became a work of co-produced knowledge.

Theoretical Framework

This paper is grounded in the human rights approach to disability which, to a large degree, is predicated upon and supported by the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD recognises that all disabled people are rights holders and that their impairments may not be used to justify any restrictions upon or infringements of these rights (Degener 2016; Kanter 2014; O’Mahony & Quinn 2017; Lawson 2017). A key component of the CRPD here is Article 23—Respect for Home and the Family, specifically, section 4: ‘In no case shall a child be separated from parents on the basis of a disability of either the child or one or both of the parents’ (UN CRPD 2006). In our experience, the potential legal contradiction between Article 23 and the Icelandic child protection legislation is generally resolved by the latter being cited as taking priority over the former. In other words, the potential risk to the health and welfare of the child takes priority over the rights of disabled parents as protected by the CRPD. In this case, and in others we have researched, this would be a reasonable judgement to make, but only with the provision that adequate support measures were indeed implemented and given a fair trial, and demonstrated to be ineffective. This is the common argument that child protection makes, that ‘all means have been tried’, and these measures have failed—and thus, custody deprivation is the next necessary step. This is echoed in the international literature which argues that parents with IDD in the child protection system do not receive the same level of support or opportunities to demonstrate adequate parenting as other parents (see, e.g., Pacheco et al. 2022; Slayter & Jensen 2019). In the cases we are familiar with, in which a disabled parent or parents challenged the custody deprivation orders, this is not what generally happens, despite child protection’s claims, and this is evident in the documentation around the cases. We contend that in such cases in Iceland, as analysed in other research by the second and third co-authors, as well as with some additional colleagues (Rice & Sigurjónsdóttir 2022; 2018a; 2018b; Rice, Baldvins Bjargardóttir & Sigurjónsdóttir 2021; Sigurjónsdóttir & Rice 2020; 2017; 2016; Stefánsdóttir et al. 2022), decisions are made that are driven by the belief that disabled parents are not adequate due to their disabilities, then evidence is cherry-picked to support that presupposition. In Ágúst’s case the trajectory was somewhat different. The positive initial reports from the training home and somewhat positive initial parenting capacity assessments—that custody was possible but with support—were overshadowed by Ágúst’s mother’s temporary leave of the country, the support worker’s overly negative reports which were built on flimsy evidence, and cherry-picked evidence from custody assessments, all of which focused on Ágúst’s disability status. It was noteworthy that his status was later presented as an insurmountable problem even though, earlier in the case documentation, this ‘problem’ appeared to be seen as not insurmountable. As important as the CRPD is, when it comes to custody deprivation pertaining to parents with disabilities, arguments based upon the CRPD will confront serious power imbalances in the form of local judicial systems which, at least in Iceland, heavily favour domestic child protection legislation, local child protection committees, and the professionals enlisted to support these claims.

The second analytical framework we draw upon is that of ableism. One definition, provided by Goodley (2014), works rather well in this context: He describes ableism as a set of ‘stifling practices associated with a contemporary society that increasingly seeks to promote … a citizen that is ready and able to work and contribute; an atomistic phenomenon cut off from others, capable, malleable and compliant. … Ableism is an ideal that no one ever matches up to’ (Goodley 2014: xi). Goodley’s definition of ableism alludes to the independent, self-governing, self-reliant working individual of neo-liberal folklore that was used at one point against Ágúst, because he was working and had good communication skills. This was taken as evidence which questioned his disability status and his protected status as per the CRPD. But ableism here also alludes to the belief that individuals are, or should be, atomistic and independent, and that this applies to the area of parenting and how parenting assessments are conducted and analysed. Proponents of the approach to disability through the lens of an analysis of ableism also point to its transformative potential. Fiona Kumari Campbell (2014), for example, argues that disability is inherently seen as negative: disabled bodies and lives have long been rendered as deviant, as deficient, as burdens. Ableism, as a concept, and such linked extensions of it as compulsory abledness, have the analytical potential, as a theoretical framework, to challenge these discourses and forms of knowledge, and open the door to thinking about disability in different ways—to accept and even celebrate difference and diversity. In response to the reputation of social theory as being abstract and removed from daily life, Campbell counters that this is not necessarily the case: ‘Theory, far from being abstract, can help each of us make sense of our lived experiences and provide the tools for considering “what is going on”, to help us ask the critical and vital questions of contemporary life’ (Campbell 2014: 81). As will be discussed, during the course of this case, Ágúst’s experiences have been transformative in terms of seeing himself as a disabled person and seeing the ableist underpinnings, not just of the child protection and judicial system, but of the larger society.

Our third analytical framework is inspired by the philosopher Eva Feder Kittay (1999; 2011), who dismisses the notion of human independence in the area of family and parenting in favour of a more realistic model of human interdependence. ‘Dependence’ is often discussed in the contexts of infancy, disability, and old age, all of which stand in contrast, presumably, to the ‘norm’ of independent young and middle-aged adults. Kittay argues that this presumed norm is generally not the case, as humans are a collective species who normatively live interdependently, and that the status of more significant forms of dependency are rarely total in nature and shift in various ways, throughout the course of life, for all of us. This point has been advanced further by other scholars working in the disability field. For example, McLaughlin (2012) contends that ‘caring networks around disability rarely are contained by household, or by family as equating to biological relations. Instead, neighbours and friends can be equally, if not more, important in mutual caring activities’ (McLaughlin 2012: 403). Any accurate assessment of parenting capacity, for disabled parents or otherwise, needs to consider the broader context of family and home, and reject the position that parents are to be assessed ‘independently’. Our contention is that this was not done in Ágúst’s case, nor in many similar cases we have examined. We will now turn to the thematic analysis we have constructed to help us understand Ágúst’s case and its outcome.

‘There Is Ableism in the System’

We contend that Ágúst lost the opportunity to be a father, and his mother to be a grandmother, because of a child protection system rife with ableist assumptions about parenting with a disability. The actants of the system have demonstrated that they are unknowledgeable about what such support entails and base their assumptions of parenting upon a normative ideal which disregards the realities faced by disabled and other marginalised parents. Furthermore, the system is seemingly enthralled by the knowledge of psychologists and parenting assessments whose validity and usefulness in the context of disability we seriously question, focused as they are on diagnosing the individual. Credentialism takes almost exclusive priority over the knowledge and stated needs of parents, even if said credentials are not ones rooted in knowledge and experience as to what proper supports for parenting with IDD involves. This continues into the judicial system, as well, as Ágúst commented: ‘I lost custody of my daughter at the district court level which ignored what my lawyers said and agreed with child protection.’ Further, ‘The decision for permanent custody was made by the Icelandic Court of Appeals in February 2022 on the basis of the three custody assessments which argued that I did not have the necessary ability for custody of my daughter.’ They argued that I had ‘huge’ assistance in providing care for the child, ‘but this “huge” assistance was not huge.’ Once Ágúst was in his mother’s home with his daughter, a support worker was provided from an agency who was supposed to have competency in this area. However, our examination of this agency’s website and the CV of the support person did not sustain this claim. In practice, Ágúst contends that the in-home support was more a form of surveillance than practical support and advice. Yet these reports appeared to satisfy the child protection system, which in turn also downplayed and ignored Ágúst and later his own lawyers. Ágúst began to notice how heavily the words of the psychologists weighed upon his case: ‘I also started to look at what the psychologists wrote about me. … I looked at the assessments and the criteria they used, and there is nothing there if the parent has a disability such as autism.’ Further, ‘I started to think about this as ableism after listening to my rights protection officer and what he wrote on social media. … There is ableism in the system—child protection only focused on risk and not thinking at all about the positive strengths I have.’ Rather than being open to multiple paths and arrangements that can result in positive outcomes for children, the evaluation system was geared to a specific benchmark of normative parenting, against which any deviations appear to be rendered as inadequate.

The CRPD is not only of importance as a legal tool, one that can pressure governments and their agencies to respect the rights of persons with disabilities, but also for its potential as a means to raise awareness, not only in the larger society, but also of some disabled people themselves. Here, the role of disability rights protection officers and the CRPD illustrate their transformative capacities in terms of both an awareness of rights and an awareness of the threads of ableism that are woven throughout the larger society. As Ágúst explains it:

I understand obstacles better when I put myself into the CRPD. … The CRPD says I am of equal worth as other people even though I am disabled. The CRPD says non-disabled people made society for themselves, and forget people like me when they were making laws and regulations and taking decisions for society. The CRPD says society should adjust to me and other disabled people.

Further, the positive impacts of the local Icelandic organisations for persons with disabilities need to be acknowledged, and they in turn have been influenced by critical disability studies and the CRPD. One effect of this case was to awaken a greater awareness on Ágúst’s part of being a person with a disability and what this means for his own personal identity and the situations faced by disabled people in the larger society. One organisation, specifically, TABÚ,³ has played an important role in this regard. As Ágúst writes: ‘I also attended a course at TABÚ and there I got to know disabled people and Embla [one of the organisation’s founders] at TABÚ. Embla taught us about ableism, and I am forever grateful for that.’

‘Child Protection Always Wanted Me to Do Everything Alone’

A review of the case materials reveals an insistence that Ágúst be evaluated and that he demonstrate capacity in parenting as if he were an atomistic individual. The material from the training home and the initial reports from psychologists all recognised Ágúst’s need for support and that custody was possible if these supports were in place. Ágúst also made this clear, as well, as he indicated the kinds of supports he felt he needed—such as with cleaning and meal preparation—especially during a time period in which his own mother was abroad. Eva Kittay (1999; 2011) argues that ‘dependence’ has often been used against disabled people to challenge their dignity and even their very humanity: ‘[W]hen individuals find themselves dependent on others (as many people with disabilities do) for self-care, economic security, and safety, the dignity which comes with autonomy appears threatened’ (Kittay 2011: 50). The independent living movement emerged as a core principle of the larger disability rights movement, and understandably so. However, Kittay points out that there is a problematic within this: ‘I worry that the emphasis on independence extols an idealization that is a mere fiction, not only for people with disability, but for all of us’ (Kittay 2011: 51). This observation extends to many areas of human socio-economic organisation, as we are an interdependent species—which is evident in many aspects of our daily lives, including parenting. There was very little recognition in the assessment process in Ágúst’s case of the important role of his mother in providing support for him and his daughter; nor was there a consideration of the impact of his mother’s having to leave the country for a temporary period to address an issue faced by another family member, which also highlights Kittay’s point about interdependency. Ágúst’s mother was essentially erased from the assessment process, and her key role in Ágúst’s parenting support network ignored. When Ágúst’s mother was present during the in-home support at one point, it appeared that she was relegated to her bedroom, as if her presence would somehow taint the observations of Ágúst’s parenting, even though allowing her to be involved would have been a more accurate reflection of how his daughter was raised in practice. Ágúst also noticed the artificial emphasis placed upon ‘independence’ in the process: ‘During these assessments my mother was away, it was during COVID and I was very tired and lonely. When my mother got back, everything was better because that reduced the stress.’ Further, ‘Child protection always wanted me to do everything alone, but with my mother we shared the responsibility. The system doesn’t understand how families work together and puts all of its emphasis on the individual and independence.’

In our evaluation of the reports of observations in the home, made during our collective research meetings, the observations appeared very limited in time and scope. The staff of the initial training home were supposed to provide follow-up visits and support—of which we could find very little evidence; this coincided with Ágúst’s recollected experiences, as well. From what we could see, child protection relied to a great degree upon reports, made by the in-home support person, as the core case evidence, along with the assessments conducted by psychologists hired by child protection for this purpose. Ágúst does not recall this in-home support to have been of much help, as he pointed out that he needed assistance, mainly with cooking and cleaning while his mother was away, and in the evenings and on weekends, when he was not working, as the child was in daycare during the workday. Some emotional support as well as respite would have helped. As Ágúst commented: ‘I would have needed a lot of support during this period—I was completely exhausted from all of the stress of being alone. It was very difficult when my daughter slept little and was waking up so often at night.’ What he received, which was supported by the documentary evidence, was mainly surveillance compounded with some tips about parenting that more or less anyone with experience with children could provide. There was no evidence of any of the specialised support and training required by parents with IDD, nor was there a methodical analysis of strengths and weaknesses, or demonstrable measures or indicators of progress or outcomes. Researchers who specialise in parenting with IDD have long been aware of the deficiencies of these kinds of assessments. Tim and Wendy Booth (1998b) note that observational data of parents tend to focus on aspects of parenting that are easily observed and, if need be, could be quantified. This includes, for example, discipline and stimulation during play. However, the Booths argue that there are skills involved in parenting, other than those easily observable, which tend to be overlooked and which may not enter into an assessment that is skewed to focus on parenting weaknesses. They write: ‘Assessments of parental competence based on only a partial rendering of what parenting entails are unlikely to give a full picture and must be treated with caution’ (T. Booth & W. Booth 1998b: 77). We contend that this ‘partial’ rendering is even more serious in Ágúst’s case, as the home visits and resulting observations were limited, not just in terms of specific parenting skill assessments, but literally in time and scope, and they also failed to consider the role of Ágúst’s mother. The Booths conclude their argument to highlight what they call ‘distributed competence’, which refers to the idea that parenting competence and positive outcomes for children do not depend upon one person. The notion of distributed competence ‘attests to the fact that parenting is mostly a shared activity and acknowledges the interdependencies that comprise the parenting task’ (T. Booth & W. Booth 1998b: 98). Any parenting assessment which does not recognise this has little value, because it is prejudicial and is predicated upon the assumption, which is not a reflection of the reality of parenting, that parenting is done by atomistic, self-reliant individuals. It is disappointing how the wisdom and insights from scholars such as the Booths and Kittay about the interdependent nature of parenting from over a quarter of a century ago apparently are still routinely ignored in contemporary child protection systems, at least pertaining to cases involving parents with disabilities.

‘Support Has Been Fully Tried’

Linked to the problematic nature of the parenting assessments was the nature of the supports that were provided. In the collective research experience of the second and third co-authors, custody deprivation cases concerning disabled parents, particularly cases in which the assessments are based upon risk rather than demonstrable abuse or neglect, often implemented weak or inappropriate support measures and, on the basis of the parent(s)’ performance, crafted an argument which concluded with the common refrain that since support has been fully tried that custody deprivation is thus the only solution. Despite having no familiarity with child protection issues before the case of his daughter, Ágúst recognised the same patterned discourse that the other co-authors have noted after numerous years of analysing the writings of child protection and their lawyers. As Ágúst commented: ‘When you look at these assessment and reports, they write like they are total robots; they write in the same phrases like they are hiding behind them—“support has been fully tried”; “he lacks insight into the child’s basic needs.” There is nothing in the data that confirms these conclusions.’ Ágúst also noticed another facet of the texts produced by child protection that the other co-authors have also been aware of for some time: Portions of text from earlier cases sometimes appear to be used in more recent cases. The second and third co-authors have at times experienced a sense of déjà-vu, for lack of a better term, doing this kind of research. Partly it was the ‘robotic’ voice that Ágúst noticed—the use of the same repetitive phrasing across documents. However, it appears to be more than that. In some case reports, we have noticed the wrong names of children and parents, and wrong ages and other incorrect details in the texts but interpreted this as sloppiness. However, another possible interpretation which Ágúst argued for is that passages from other cases could be copied, with relevant details changed, and mistakes arise when the prior details are mistakenly left unaltered. As he commented: ‘They even seem to copy-paste the text from other cases, and my own reports are full of basic mistakes, like my daughter’s name.’ Whatever factor accounts for these factual errors in the text, it does not bode well for any attempt to make a case that each parent under investigation is provided specifically tailored support, and that a careful assessment of the outcomes is then made before custody deprivation is sought.

What is at the heart of the matter in this case is that there is little evidence to suggest that the person chosen to provide support was trained in supporting parents with IDD or even in general child protection work. Furthermore, the case data suggests that this person was used more as surveillance than as a provider of support—even going so far as to collect information from a daycare provider for Ágúst’s daughter, although one assumes a child protection worker would normally be tasked with this role. Ágúst raised these criticisms himself: ‘The support I got was not support, it was just surveillance. In the reports were all kinds of criticisms but nothing about what was done to help.’ As such, this person’s lack of training in this specific area raises questions as to the value of the reports that were made and as to the outcome of the overall case, considering the weight that was given to these reports. Ágúst pointed out that it is about more than one individual worker; it was the overall system that was at fault. He noted such basic issues as why he was asked what he needed for support when, as a first-time parent, he did not really know all of the answers to that question, and that these experts from child protection should have been able to evaluate and assess this themselves: ‘Actually, child protection was supposed to know, not me. Hoping that the client will know shows the lack of knowledge on child protection’s part.’ Even much of the specific case data itself was of questionable value in regard to assessing parenting capacity. Ágúst noted: ‘For example, there was a complaint that I was feeding my daughter very plain and boring food.’ This supposed evidence was even raised by one of Ágúst’s lawyers in a mocking manner, which Ágúst paraphrased: ‘My own lawyer asked that in court, what is plain about her diet? Porridge in the morning, skyr⁴ at lunch and bread later in the afternoon; aren’t we just happy when we can find something that a one and half-year old likes? What is so bad about that?’