Sofie Sergeant & Mitzi Waltz
Able and Disabled Bodies in Two Dutch Discourses of Cost and Value
“We want to move to a time when thinking about the human will always involve thinking about disability.” (Goodley and Runswick-Cole, 2014, 13)
In the Netherlands, as in many countries, fear of disability is always evident. From potent terms of abuse and exasperation (mongool, doe normaal), to persistent segregation in schools, workplaces and public spaces, this fear is audible and visible, as illustrated by the image above. Eugenic discourses regarding bodies and minds labelled as “disabled” pervade the medical and cultural realm, promising a future where perfect people can be created, and disabled or sick bodies can be painlessly removed. “Eugenics” describes the pseudoscience of improving the human race through selective breeding. Eugenic practices have included controlling the fertility of disabled people through segregation, institutionalisation, sterilisation, forced birth control, and selective abortion of foetuses with disabilities, as well as encouraging disabled people to commit suicide, encouraging active (involuntary) euthanasia, and at some points in history committing state-sanctioned murder on grounds of disability. In eugenic discourses, disability is often explicitly tied to race, sexuality, crime and the social or financial costs of disabled people.
Benefit policies place a duty on disabled people to participate materially in society, or lose their right to a survival-level income. Material participation, however, is not the same as belonging (Schippers and van Heumen, 2014). As Bogdan and Taylor write, “what and who others, as well as we, are dependent upon our relationships with them, and what we choose to make of us” (1989, 146). Belonging implies being seen as equally valuable. People who belong are made to feel welcome and are given voice and choice in society, rather than being grudgingly allowed to access an unchanged society. A nascent rights-based discourse has arrived via the newly ratified UN Convention on the Rights of Persons with Disabilities. However, the UN CRPD presents policy goals without enforcement powers—a suitable form of virtual-reality “change” to adopt when speeded-up forms of capitalism make living with physical or mental difference ever more untenable in the real world. Indeed, the main impediment to adoption of the UN CRPD in the Netherlands was concern about financial impact (DeJong, den Exeter en Hulst, 2013). Establishing that there would be few costs associated with signing made it easier for the legislature to put pen to paper.In this article, we examine two recent cultural texts in which disability is constructed within this environment of fear-based policy and practice, with direct reference to discourses of economic worth and value. The first is the official financial impact assessment of the UN CRPD (ibid.). The second is a film, Nena (Diesing, 2014), which aligns with eugenic discourses about disabled bodies and the (lack of) value of disabled lives. Analysis of these speculations about the value of disabled people’s lives show how discourses are used to devalue and exclude disabled people, even within texts that on the surface appear to promote individual choice and control.
The UN CRPD economic analysis manages to combine naivety and dryness, claiming in its summary that accessibility of education and housing are already assured through existing Dutch policy, and so concentrating on potential impact on providers of goods and services. Its drafters explicitly chose not to consider other aspects of the built or social environment, revealing the use of a medical model of disability, in which disability is an individual condition, rather than the social model, which sees it as produced through barriers (physical, social, attitudinal) that people with different bodies and cognition encounter (Oliver and Sapey, 2006). It presents a lengthy cost-benefit analysis that is utterly meaningless (explicitly based on fictional scenarios rather than hard data, and setting no concrete policy measures, policy objectives or deadlines), which regularly references the get-out clause of undue burden (DeJong, den Exeter en Hulst, op cit.).
Undue burden is a phrase that, when unpacked, reveals an appeal to ableism: the oppression of people whose bodies don't fit the current norm (Goodley and Ruswick-Cole, 2011). Along with related terms like “reasonable” and “appropriate,” it creates in Deleuzian terms (1988) a striated space that, as Davies (2009, 23) writes, “imposes binary thought […] cuts and divides objects into categories, and divides people from each other and from the spaces they inhabit.” These terms carry the assumption that non-disabled people will decide whether the lives of disabled people are viable. Non-disabled people are seen as in possession of reason (able to decide what is “reasonable”), as setting criteria for “appropriateness” (cost versus benefit), as deciding who is due (deserving of) the same access to spaces, activities, relationships, goods and services that they themselves take for granted. Disability organisations define these actions as based on ableism, discrimination against disabled people achieved by putting hurdles in their way (Miex, 2016).
The UN CRPD report authors also employ buzzwords, such as inclusion and participation, that pepper current Dutch discourse about disability. How and where disabled people should be included and in what ways they can participate will be discussed by the state, businesses, care and health sector groups, and “representatives” of disabled people. This latter group is often made up of non-disabled people who advise or serve disabled people, who may themselves find it difficult to challenge them for the few non-government, non-business seats at the table. Because actually challenging the existing order is deemed unreasonable, inappropriate and (most importantly) expensive, the report concludes by saying that consultation and self-regulation will satisfy disabled people’s need to access goods and services (DeJong, den Exeter en Hulst, op cit.). However, most non-disabled people are not well served by the goods and services on offer, whether we speak of general services like education or something so prosaic as a pair of jeans. Disabled people, as outliers from the normate centre, are those whose bodily or cognitive differences bring the uncomfortable standardisation of modern culture into sharp relief (Cuppen, 2016). Where a nondisabled person may find a class boring or a pair of jeans too tight, a disabled person may find the class useless and the jeans impossible to put on. But as Goodley and Runswick-Cole (2012) write, when “the quirky quality, creativity and personhoods of disabled [people] are merely understood as signs, symptoms and signifiers of pathology,” the current bounds of “normal” cannot be challenged. Also missing from the cost-benefit analysis are key facts about most disabled people’s lives: the inescapable intersectionality of disability and poverty (United Nations, 2012). Poverty and low income also minimise access, if access is defined as simply exercising choice in the marketplace.
The UN CRPD report states that the human rights of people with disabilities are best (i.e. least expensively) served through occasional individual adaptations. Disabled people must request adjustments individually, and non-disabled people will decide. If the solution costs money, the get-out clause can be invoked. “When an adjustment is too drastic, or too many people request help, that may be a disproportionate burden” (DeJong, den Exeter en Hulst, op cit., vi) and can be ignored. If a solution can’t be easily made or purchased, if the problem of fit is ongoing, the issue is just too messy to disentangle. The emphasis is on individual rather than societal change, what Trickett et al. call “person-fixing rather than context-changing” (1994, 18, quoted in Linton, 1998, 527). In this analysis the problem, and therefore the solution, is personal and individual, not developmental and collective.
A disproportionate burden is what middle-aged father Martin in the film Nena has found himself to be. Using a wheelchair due to a degenerative health condition, set adrift by his ex-wife, Martin must now rely on the oppressive charity of his Calvinist brother and the state, and should be grateful for what he is offered. The expectation of gratitude is an unspoken element in many disability-related policies, such as the requirement that disabled people must “participate in society” (for example, by working for free) in return for disability benefits. While there certainly a longing for meaningful work and contribution amongst disabled people in Netherlands, the rhetoric of gratitude/ingratitude is surprisingly similar to that described by Halleh Ghorashi (2014) in relation to race in the Netherlands.
Martin is framed by the filmmaker as enclosed in the space of impersonal care (the bathroom and bedroom where he is “attended to”), living an increasingly isolated life because his physical condition has changed. Friends and former colleagues are absent; his own family seems to relate to him as an inconvenient object, not even speaking to him while delivering personal care. The exception is his daughter Nena, who is shocked when he attempts suicide. Nowhere do we see other wheelchair users, whose experiential knowledge could literally open up doors for him. His life has no social, economic, sexual or political dimension. The only “right” Martin can claim is the right to end his life. To do so, he enlists the help of his reluctant daughter—who learns thereby the culturally important lesson that love and filial or societal duty mean nothing when those we are in relation to become “useless” in the sense of economically, sexually and socially inactive, even when the inactivity is due to exclusion. Removing the inconveniently disabled is the obvious endpoint of a binary analysis—a permanent solution to an overly complex problem. Arguments can be made about personal choice, of course, but disability activists argue that when choosing life means relying on an ablest social system, others effectively make the choice for you. It is never clear why Martin chooses a particularly grisly form of suicide—rolling his wheelchair in front of a speeding train—nor why he involves his daughter in the act. After all, assisted suicide is available in the Netherlands in calm and sterile circumstances, sparing family members and train conductors undue trauma. But given the primacy of cost-benefit analysis in the Dutch culture surrounding disability, as exemplified by the UN CRPD response, he has learned that he cannot rely on others to care for or about him, as no one can challenge the primacy of price over quality of life.
Goodley and Runswick-Cole (2011) link violence against disabled people to discourses of value prevalent in advanced capitalism. They argue, echoing Žižek’s 2008 call for an ethics that embraces otherness and diversity, that discourses measuring disabled lives in terms of productivity and economic worth can only be countered with cultural narratives foregrounding inclusion and acceptance (Cuppen, 2016). In the film, Nena likes to engage in a game of choice with her father, i.e., “Madonna or Samantha Fox?” The rules of the game challenge the players to make a clear choice, with no conditions or nuances added. This game pushes its players towards binary thinking—binary thinking like: cognition or tacit knowledge? Fearing or embracing disability? Normal or abnormal? Independent living or choosing death? We have to admit that such binary thinking is very seductive, because it produces clean, clear results, even though we all know that reality is messy, complex and entangled. People with disabilities are often painted as atomised individuals whose bodies or minds are aberrant, whose needs can only be met by taking from more-deserving others. But while this stereotype is purveyed through cultural texts ranging from public policy analysis to teen-oriented romantic films, the reality is that disabled people have families, friendships, romantic and sexual relationships, desires. They have no flawless body, perfect sex life, fabulous wealth, or ideal life… but who does? They certainly do have what non-disabled people presume for themselves—competence to experience their own emotions and physicality, have their own dreams, make their own decisions (Sergeant, Verreyt, and van Hove, 2016). They have tacit and embodied knowledge of what is needed to make their own lives viable and vibrant. To truly take this competence into account via enacting social change requires us to “keep searching for new ways of engaging and connecting” (Kliwer, Biklen and Petersen, 2015, 24): to both challenge the “dogma of defectiveness” (ibid.) and overcome our fear of disability.
Dr Mitzi Waltz is a Senior Researcher with Disability Studies in Nederland and a disability activist. She is a journalist, former Senior Lecturer in Autism Studies, and the author of several books, including Autism: A Social and Medical History (2013, Palgrave Macmillan) and Alternative and Activist Media (2006, University of Edinburgh Press). Most recently, she contributed a chapter on disability in Dutch film to Cultures of Representation: Disability on World Cinema Contexts (Benjamin Fraser, ed., 2016, Wallflower Press). In her spare time she gardens and sees.
Sofie Sergeant is the education coordinator of Disability Studies in Nederland and working on her PhD on using creative methods in supporting the dialogue with people with intellectual disabilities. She is the author of several books, including Dingske (2010, Garant), Nu en straks (2013, Garant), Et maintenant (2014, Garant), Achter de rouw (2015, Witsand). These picture books - with the paintings of Saar De Buyer - have lead to the creation of a documentary (Nu en straks, directed by Joke Nyssen) and an electronic application (EBB, coming soon).
Bogdan, Robert and Taylor, Steven J. “Relationships with severely disabled people: The social construction of humanness”. Social Problems 36(2) (1998): 135-148.
Cuppen, Iris [dir.] Let’s Get Physical: Taking the Rough With the Smooth [film]. Amersfoort: Disability Studies in Nederland (2016). Accessed 02.06.2016 Let's get physical (youtube)
Davies, Bronwyn. “Difference and differenciation” in: Davies, Bronwyn and Gannon, Suzanne [eds]. Pedagogical Encounters. New York: Peter Lang Publishing (2009): 17-30.
De Jong, Matthias, den Exeter, André en Hulst, Ernst. Economische Gevolgen van Ratificatie van het VN Verdrag Handicap. Rotterdam: SEOR, Universiteit van Rotterdam(2013). Accessed 30.05.2016. http://www.mensenrechten.nl/sites/default/files/Eindrapportage economische gevolgen VN verdrag Handicap.pdf.
Deleuze, Gilles and Guattari, Félix . A Thousand Plateaus: Capitalism and Schizophrenia, trans. Brian Massumi. London: Athlone (1988).
Diesing, Saskia [dir.]. Nena [film]. Amsterdam: Cinéart (2014).
Ghorashi, Halleh. “Racism and the ‘Ungrateful Other’ in the Netherlands” in: Essed, Philomena and Hoving, Isabel [eds.]. Dutch Racism. New York: Rodopi: 101-116
Goodley, Dan and Runswick-Cole, Katherine. “The violence of disablism”. Sociology of Health & Illness 33(4) (2011): 602-617; doi: 10.1111/j.1467-9566.2010.01302.x
Goodley, Dan and Runswick-Cole, Katherine. “Reading Rosie: The postmodern disabled child”. Educational & Child Psychology 29(2) (2012): 53-66.
Goodley, Dan and Runswick-Cole, Katherine. “Becoming dishuman: Thinking about the human through disability”. Discourse: Studies in the Cultural Politics of Education 37 (2014): 1-5; doi: 10.1080/01596306.2014.930021.
Linton, Simi. “Disability Studies/Not Disability Studies.” Disability & Society 13(4) (1998): 525-540.
Miex (2016) “Wat doet Miex?” Accessed 29.06.2016. http://www.miex.be
Oliver, Michael and Sapey, Bob. Social Work with Disabled People. New York: Palgrave Macmillan (2006).
Schippers, Alice and van Heumen, Lieke. “The inclusive city through the lens of Quality of Life”. International Public Health Journal 6(4) (2014): 311-322.
Sergeant, Sofie and Verreyt, Lien “De dialoog ondertitled met beelden”. In: Van Hove, Geert, Schippers, Alice, Cardol, Mieke and de Schauwer, Elizabeth [eds]. Disability Studies in de Lage Landen. Antwerp/Apeldoorn: Garant (2016): 151-190.
United Nations (2012) Fact Sheet on Persons With Disabilities. Accessed 16.06.2016. http://www.un.org/disabilities/documents/toolaction/pwdfs.pdf.
Žižek, Slavoj. Violence. London: Profile Books (2008).