Between duty and right: disabled schoolchildren and teachers’ ableist manifestations in Sweden

Abstract

In this article we discuss ableist manifestations about chronically ill and disabled schoolchildren in Sweden. On claiming their right to schooling, these children risk being excluded due to not conforming with norms while being refused alternative formats that would enable participation. They are then accused of not attending school and construed as problematic. Parents are derided as mollycoddling perpetrators by teachers who perceive themselves as superior knowers of disability and illness, polarising an already infected school debate. Alternative formats for participation are derided, claiming that certain disabilities do not exist or that parents exaggerate their children’s symptoms. We concede that teachers’ poor work environments due to underfunding and unreasonable workloads are problematic, but we are adamant that unfavourable work conditions must not entail unethical professional conduct. We hope this article will contribute to putting the situation of chronically ill and disabled schoolchildren in Sweden on the radar of Critical Disability Studies as well as in relevant fields of practice and that it might stimulate a change in public debate.

Keywords:

• Chronically ill and disabled schoolchildren
• chronic illness
• recognition
• disability denial
• Sweden

Manifestations of ableism in Sweden’s education system

Our current research interest involves interdisciplinary study on disability rights from a unique legal/educational perspective, focusing on access in Swedish schools (Pettersson and Gillberg 2019). We were therefore particularly interested when reading on Twitter discriminatory commentary concerning chronically ill and disabled schoolchildren, posted by Swedish schoolteachers. These comments conveyed a lack of knowledge of disability in general. Unfortunately, such commentary is not uncommon in our experience; newspapers are filled with articles bemoaning the culture of ‘snowflakery’ and demands that society stems the tide of ‘abusers’ of the welfare system, a public discourse in which already stigmatised groups are blamed for society’s failings that will sound familiar to British readers (Duffy and Gillberg 2018). Other articles highlight that school funding has been slashed, with teachers told routinely that basic school activities including teaching are inadequately funded and they must manage with less. There is no denying that the teachers’ work situation is not ideal.

Discriminatory commentary is, however, particularly hard to read following Michael Oliver’s recent passing, a compassionate and astute scholar and disability rights activist whose Social Model(s) of Disability transformed the way in which disabled people looked at themselves, empowered to find a sense of dignity and self-worth, having been blamed for their individual ‘shortcomings’ (Disability News Service 2019). In our work, we emphasise recognition because if there is recognition of the rights-based participation of all, there must be provisions that are available without any conditionalities attached to such rights (Pettersson and Gillberg 2019). We will not pursue this further except to say that the lack of such recognition constitutes a fundamental problem in Sweden.

The social model of disability has not had the same traction in Sweden as in the United Kingdom and elsewhere. To place the burden for not fitting the societal mould on those that are disabled is common practice in institutional contexts; in fact, it is so widespread that many patient and interest organisations themselves run on ableist structures, often encouraging disabled people to accept practices that are controversial.

Ableism in Swedish schools is a particularly troublesome issue, especially when analysed against the backdrop of Swedish disability history and politics. Pettersson (2015) argues that Sweden is still struggling with its history of race biology and that the latter is closely linked to patterns of ostracism and vilification of non-abled bodies.

For readers to understand the precarity of disabled school children’s problems in gaining access to schooling and parity of participation, we exemplify by incorporating some of the comments we discovered earlier this year on Twitter, anonymised and without dates. Our viewpoint is that it must be possible to attend school without experiencing discriminatory conduct. We are, as previously mentioned, aware of the factors that are detrimental to teachers’ professionalism and personal well-being, but while teachers do have a collective voice, chronically ill and disabled children do not.

Examples of ableism in Swedish schools

Teacher A refers in a tweet to a fictitious ‘Mobility-Marvin’ followed by Teacher B, who follows up on the ‘joke’ by inventing the name ‘Image Processing Imogen’. Teacher C joins in with a contribution ‘Digitisation-Dick’, whereupon Teacher D acknowledges these three contributions with an amused emoji. By way of explanation, Teacher D had taken the initiative to ridicule all manner of learning disabilities – attention deficit hyperactivity disorder, autism, dyslexia and chronic illness – by listing alphabetically Swedish names alliterating them with a disability (e.g. ‘Dyslexia Dan’). These are teachers that often set the tone on Swedish School Twitter and it appears difficult to conduct a reasoned debate; to exemplify, person X wrote in a comment in response to these ableist tweets ‘utterly inappropriate for school staff to poke fun at the children’s expense, to be in need of adjustments and support in school is not a bloody joke’, and person Y added ‘many disabled students never gain access to secondary education due to lack of accommodation and support’. Person Y added that ‘disabled children have a right to certain support’, while trying to show some understanding towards the teachers’ jocularity: ‘I know you guys are struggling, too, but honestly, this isn’t okay’.

The teachers’ commentary turned malicious when another teacher claimed that ‘maybe we just don’t believe parents and medical staff regarding diagnoses’ and that the demand on teachers for special needs support is ‘grossly unfair’. ‘Maybe’, Teacher E continued, ‘we are just sick and tired of mollycoddling parents’. When some gentle pushback occurred, self-pitying commentary ensued for not receiving any understanding of their need to ‘vent and joke in order to be able to carry on’. Other teachers joined in along similar lines, creating yet more name/disability alliterations, some of which were so crass we will not repeat them even in an article that serves to initiate debate.

An anonymised nurse asked ‘is my list as funny as yours, how about Diabetes-Danny and Cancer-Caroline?’ in an attempt to criticise the teachers. Teacher E became defensive, claiming that ‘to survive this mess, steam must be released’, failing to take the nurse’s point, and other teachers chimed in, saying ‘we simply don’t believe in all this fancy-shmanzy special needs stuff’.

It is interesting to note that many teachers use ‘we’ to express collective disdain. ‘Perhaps our anger is targeted at the adult world that is incapable of taking those children’s right to an education seriously’ was one comment that stood out, because it is based on the prejudice that supportive tools and inclusive attitudes hamper what would otherwise be perfectly ‘normal’ children’s development. According to the teachers’ own reasoning, special education and supportive technology render children disabled and therefore ‘all that nonsense must be stopped’. One teacher expressed: ‘we are fighters in a hopeless battle against Marvin-Malingerer and his enablers!’

Such attitudes can present serious obstacles for disabled children and their parents outside the Twitter sphere, as this is not a case of some teachers being the exception to the rule in which schools function ‘in real life’ while the hateful expressions are exclusive to social media. We fear that the publicly displayed ableism is of such a magnitude that schoolteachers feel safe in voicing abusive opinions with impunity.

These teachers reason that today’s diagnoses did not exist in the past, ergo they cannot exist now. From their own pasts, they infer that children are unnecessarily pampered and overprotected. The same teachers state that they do not believe parents, indicating they know better than parents and medical practitioners. It is suggested that disabled children’s needs are a burden on the education system, mainly because they create an unfeasible amount of additional work. To summarise, these teachers:

• reject the veracity and legitimacy of diagnoses such as dyslexia, dyspraxia and chronic illnesses;

• prioritise budget concerns over disabled children’s needs;

• lack factual knowledge about disabilities and chronic illnesses;

• critique the Swedish education system for being based in law;

• side with the same system when it suits them – in other words, they lack consistent systems thinking;

• perpetuate notions of unworthiness; and

• are suspicious of parents’ knowledge and motives.

The duty to attend school for children living in Sweden is clear in Chapter 7 of the Swedish Education Act (Sveriges Riksdag 2019). The right to an accessible education on their own terms, however, is vaguer, and follows primarily from Article 28 of the UN Convention on the Rights of the Child (United Nations 1989) and Article 24 of the UN Convention on the Rights of Persons with Disabilities (United Nations 2006). The duty to attend is, in practice, stronger than the right to education.

A complex situation arises because unless schools offer adequate accommodations, parents and carers fall foul of their duty to let their children attend school. For this alleged failure, the state has devised procedures to prove that the parents are in breach of the law, which leads to the paradoxical situation that not only can parents be deemed untrustworthy knowers of their children’s needs, but children can, in extreme cases, be taken into state custody and parents prosecuted, while the parents lack tools with which to demand that their children’s right to education be recognised. In such a system it is perhaps unsurprising that some teachers who are predisposed towards disability denial feel emboldened, aiding an unjust system in wreaking havoc on disadvantaged children.

Concluding thoughts

We suggest that a rights-based model must meet the urgent needs in terms of rights to an education, while a social model of disability should be introduced in school leadership training and teacher education as a measure to achieve a shift in attitude towards access and participation.

The examples here might be expressions of a struggling system and we refrain from blaming teachers for systemic failures, but professional ethics have been forsaken at the expense of these children and their parents. Some schoolteachers are badly struggling, under-educated about disability and unaware of the significant role which access to quality education plays in the lives of disabled children. School leaders are not any better prepared and often leave special education teachers to ‘solve’ a ‘problem’. Such leadership leaves teachers unsupported. We hold that teachers are victims of the same system as chronically ill and disabled children but without understanding themselves as part of it. In failing to comprehend this, teachers render themselves, paradoxically, perpetrators of the same systemic injustices that drive them to the brink of collapse.

Currently, we do not know what the governing policies of local authorities contain regarding anti-discriminatory measures, but we aim to establish what legal provisions local education authorities offer in our quest to contribute meaningfully towards change. Chronically ill and disabled children must uncompromisingly be recognised on their own terms.

Acknowledgement

Claudia Gillberg is an occasional editor for Disability & Society.

Disclosure statement

No potential conflict of interest was reported by the authors.