Is the state responsible for the existence of disability?
To disable can mean one of three things. It can refer to a disease, injury, or accident limiting someone in their movements, senses, or activities; putting out of action; or to an action or circumstance preventing or discouraging someone from doing something. Disability refers to a physical or mental condition that limits a person’s movements and activities but also to a disadvantage or handicap, especially one that is imposed or recognised by law.
Thus, to ask whether the state is responsible for the existence of disability is to extent the scope of understanding of what ‘disability’ can be, looking at both biological and social meanings.
This essay will assess the state’s responsibility in the existence of disability. It will first look at how the state is responsible for the existence of disability in a legal sense. Then, it will focus on the idea of social disabling. Lastly, it will address the state’s indirect responsibility in the existence of disability.
The idea of the state being responsible for the existence of disability can seem illogical. Indeed, the most common conception of disability is one of biological or physical handicap, and surely, the state cannot be responsible for the existence of such biological learning difficulties or malformations. Yet, while the state cannot be responsible for disability in a biological sense, it can be in a legal sense. In a way, while one can decide that they consider themselves disabled, so can everyone else; everyone has things they are unable, or less able to do. Thus, in the face of this plurality of experiences and subjectivities, the state ‘decides’ what is considered a disability or not. In a way, disability examiners socially translate biological, physical, or mental impediments into widely acknowledged and recognised facts. Thus, a form of consensus is reached, and disability can be written into law. To legally recognise disability in disability acts enables disabled people to ‘exist’ in a world that, in theory, does not discriminate against them. Further, people with disabilities might be entitled to allowances, or the allocation of funds to help people live with disability. As such, to bring something into law enables it to ‘exist’ socially.
On some level, individuals are not born into the world with a biological disability but rather a social one; they are only seen as disabled if there is a generalised, and legalised, recognition that a biological, physical, or mental condition counts as ‘disability’. This confers to the state the power to bring disability into existence, or to fail to do so.
Perhaps the most prominent way the state can be considered responsible for the existence of disability is socially. For instance, prisons are socially disabling in the sense of having the effect of putting someone out of action. Further, although going to prison does not constitute a disability in a biological sense, it can constitute one in the sense of a socially debilitating one. Indeed, people who have been to prison are more often than not stigmatised in a way that is disabling in social settings; once a person has been in prison it is harder to get a job, to get a bank loan, to get custody of children. In the same vein, Davis’ example of mental health clinics is relevant. By exerting control over what is and is not disability, the state also has an influence on how they are viewed by society. Indeed, in Thrace, for over a century, mentally ill patients were secluded in remote custodial hospitals. This thus created a certain understanding of what mental illness was, which was that it was dangerous and incompatible with social life. The state thus creates a certain narrative around this particular form of ‘disability’. However, when the state attempted to ‘reintegrate psychiatric patients into society during the past twenty-five years’ due to social reforms and changing mind sets, these patients ‘struggled against a folk genetics of madness that rendered them a social liability to their families and against the threat posed to their recovery by a stigmatised identity ‘in the community’’ (Davis, 2012). Here, the state is responsible not only for the existence of disability through its official recognition, but also for the narrative it creates around disability, extending a personal disability into a social one.
Moreover, when normalcy is expected, the state can put in place ways to avoid the abnormal. The development and proliferation of reproductive technologies such as prenatal testing, which detects foetal anomalies, responds to the generalised desire of what is ‘normal’. As Rapp and Ginsburg (2001) suggest, while in the US genetic counsellors are trained and expected to ‘express neutrality about the choices a pregnant woman and her partner may take around amniocentesis testing, the very existence of such a technology and the offer of such tests under the terms of consumer choice are premised on the desire for normalcy and the fear of unknown abnormalities’. In a sense, the legalisation of abortion, which can be carried out after the detection of foetal anomaly, does not create the existence of disability, rather it prevents it.
What the state does create is a narrative. For instance, while the survival of disabled infants has ‘escalated dramatically thanks to improvements in infant surgery, antibiotics, and life support technologies’, the state further develops ways to reduce the ‘abnormal’, such as amniocentesis testing, instead of developing the knowledge around such disabilities. Rapp and Ginsburg (2001) highlight that in the face of the improvement of disabled infants’ survival, ‘the knowledge of what is entailed in caring for such children remains absent from mainstream discourse, underscoring a sense of social segregation and stigma’. The desire for normalcy is so overpowering that sometimes rather than evolving in tandem, the biological knowledge and social knowledge of disability evolve at different times. Thus, by failing to provide a narration in adequation with the developments in medical and scientific knowledge, the state can further stigmatise disability.
In some cases, the state’s narrative can be the origin of disability rather than any real biological defect. Apartheid as a system of institutionalised racial segregation, was a product of the state wherein race was made out to be a form of social disability. This state crafted narrative was socially disabling insofar as it physically disabled blacked people from doing the same things as white people, being presented with the same opportunities, and being treated with the same respect. Here apartheid is not a disability in a biological sense, instead it is a disadvantage or handicap imposed and recognised by law. Stoler (2004) notes that ‘students of the colonial consistently have argued that the authority to designate what would count as reason and reasonable was colonialism’s most insidious and effective form of rule’. As such, the state being able to distinguish between reason and reasonable gives it the power to shape social reality, and as a result, to enable or disable, to give permission or make people unable to do something, in accordance with their ideals of what reason and reasonable should be taken to mean.
This reality shaping quality gives the state a singular form of power, a power to hide, to obscure, to silence. Arguably, in the context of the Chernobyl nuclear power plant explosion of 1986, the state is responsible for the existence of disability, manifesting itself in the form of cancers. Indeed, Petryna (2013) underlines that it took eighteen days for the secretary of state, Mikhail Gorbachev, to publicly acknowledge on television the nuclear disaster, and within that period, because the severity of the nuclear catastrophe was unknown to most, ‘tens of thousands of people were either knowingly or unknowingly exposed to radioactive iodine 131, absorbed rapidly in the thyroid and resulting, among other things, in a sudden and massive onset of thyroid cancers … as soon as four years later’. Had the state publicly recognised the reality and threat of the explosion and acted in consequence, ‘such onsets could have been curtailed had the government distributed nonradioactive iodine pills within the first few weeks of the disaster’. What is more, the state sent many to their death, in a physical sense, by sending men into the power plant to clean up the disaster and help contain the radioactive fumes, but also in a social sense insofar as those who were requested to work in the explosion zone after the evacuation of the general population have little employment opportunities; Petryna highlights how one maintenance worker from the zone relates that ‘because of his work history, no firm outside the zone would hire him’.
Petryna draws attention to how Ukraine expends, on average, around 5 percent of its budget on costs related to Chernobyl’s aftermath. In 1995, ‘over 65 percent of that outlay was spent on social compensations for sufferers and on maintaining a massive legal-medical, scientific, and welfare apparatus’. Conversely, neighbouring Belarus, where an estimated 23 percent of its territory is considered contaminated, spends much less than Ukraine on the social welfare of sufferers and also limits the number of ‘Chernobyl claimants’. Thus, ‘the Belarussian government has tended to suppress or ignore scientific research; it downplays the extent of the disaster and fails to provide enough funds for the medical surveillance of nearly two million people who living in contaminated areas’, exemplifying how the state has the power to silence narratives and hide realities, hence, in a paradoxical manner, both denying the existence of disability all the while perpetuating it precisely through denial.
As such, there are many instances in which the state can be seen as responsible for creating or allowing the perpetuation of social disabilities which disadvantages individuals or groups.
Yet, the state’s power over the narrative of disability can be problematic insofar as it may at times not be in adequation with reality. Ralph (2012) highlights that the narrative the state chooses to embrace will inherently have the power to give a voice to or silence the voice of disabled people. Indeed, the dominance of the ‘medical model’ of illness and disability, which views ‘disabilities and diseases as physical conditions that reduce a person’s quality of life, and thus pose clear disadvantages to that person’, which has been embraced by the state, has offered a certain type of narrative, casting disability in negative life, as something inescapable, a narrative which has thus permeated common conceptions of disability. Yet, this narrative is selective, as highlighted by disability scholars, and only enables the existence of a certain view of disability. Indeed, Ralph notes that the medical model is often presumed to silence a disabled person’s voice. This is largely due to medical culture often being experienced as ‘foreign’ to those who are ill or injured because in hospitals ‘doctors reinterpret personal feelings of suffering into symptoms’, with medical treatment facilities using ‘language that seem to come from elsewhere’. Arthur Frank in The Wounded Storyteller (1995) describes how disabled patients often feel that they must ‘surrender’ their narrative to medical authority; as one quadriplegic outlines ‘when we’re admitted to a hospital … the forms ask for ‘Patient name’. We stop being people and start being patients … our identity as people and the world we once knew are both relinquished; we become their patients and live in their hospitals’.
Disability scholars have hence argued that the medical model is a skewed perception of the reality of disability, and instead brought forward the idea of a ‘social model’ of disability wherein it is not an ‘individual’s actual ‘impairments’ which construct disability as a subordinate social status and devalued life experience but social barriers [including] anything from inaccessible buildings, to limited modes of transportation and communication, to prejudicial attitudes’. This allows for a more holistic view of disability, not solely limited to biological factors but rather actively recognising the social forces which may compound the disadvantages that disability presents and allow social exclusion.
Thus, perhaps scholars, advocacy and kinship groups are more responsible for the ‘existence of disability’ in the sense that they challenge state narratives with ones in better adequation with the lived realities of disabled people, instead of glossing over the different experiences and obstacles that disabled people face by creating ‘one for all’ formulas.
Ralph (2012) for instance, underlines that statistics can obscure realities insofar as they can choose to focus on certain facts and figures over others. He notes that Chicago’s violent crime rate in 2009 was almost double that of New York and Los Angeles and in the year 2008-2009, a record number of public-school students were murdered. However, the natural focus of statistics on murder and death limits understandings of urban violence. Indeed, ‘unacknowledged in these disheartening statistics is a more complex reality: most victims of gun violence do not die’, and while the most common cause of urban violence in urban areas may be gun violence, ‘a victim of a gunshot wound is four times more likely to end up disabled than killed’. Precisely because the state focuses not on disability resulting from violence but rather on death, it is up to individuals or groups of individuals to ascribe meaning to such forms of disability. That violence prevention be delivered by disabled ex-gang bangers may be surprising. Yet, experience with violence, their prior involvement in gang banging and their lived reality of disability grants them a way to identify with youths currently caught up in urban violence and the pressure of gangs. Justin, one of the disabled ex-gang bangers uses his disability in order to dissuade through identification, thus transforming his own disability and suffering into a preventive tool for future generations, in a way state guidelines or warnings cannot. Ralph underlines that ‘today, Justin’s inability to feel – the physical and psychological wounds of paralysis – enables him to elicit rare shades of empathy and sorrow from otherwise unshakeable young gang members’. Here, the existence of disability is made tangible, in a way that can be identified with, in order to prevent the prevalence of such disability.
What is interesting is how disabled ex-gang bangers prevention methods ‘contrast sharply with the aims of the disability rights movement, in which constructing physical difference as an inferior identity is routinely and unequivocally criticised. This incongruity suggests that paralysed ex-gang members and the larger world of disabled activist are not fully visible to each other’. This points to how there are shades and levels of activism, with meaning ascribed to disability in different ways and on different scales. For instance, in A Healing Family, the author Oe speaks of how his son, Hiraki, became handicapped after they had to remove a dangerous brain tumour. In cases where a person has a mental disability, ‘it isn’t the individual himself but rather his family that has to pass from the ‘shock phase’ to the acceptance phase’’, that has to re-create itself and its narrative.
As such, arguably, disability, before existing through the state, exists on a more intimate level, rendering the ‘domains of kinship and reproduction as key social sites at which many disabilities are initially assigned cultural meaning’. Yet, although the most immediate arena where disability is played out and seen is within the family, Rapp notes how ‘the proliferation of publicly circulating representations of disability as a form of diversity we all eventually share – through our own bodies or attachments to others – offers potential sites of identification and even kinship that extend beyond the biological family’. This creates the notion of a form of ‘public intimacy’ in regard to disability where representation through ‘disability narratives’ authored by disabled people and/or their family members ‘offer revised, phenomenologically based understands that at times also anchor substantial analyses of the social, cultural, and political construction of reality. As such, that kinship and advocacy groups often seek some form of legal or social recognition of their claims is a good thing insofar as by actively seeking to be seen, to be heard, they disseminate intimate insights into disability among a broader public which ‘has helped to mobilise an extraordinary and rapid transformation since the 1970s in the ways such notions as rights, entitlement, and citizenship are conceived – a transformation that is shaping public policy in areas such as health, care, education, transport, and access to built, aural, and visual environments’. This highlights a form of dependence or influence between kinship or advocacy group narratives and the state narrative, suggesting that if the state ultimately is responsible for the existence, legal or social, of disability, then such responsibility must evolve in tandem with a form of accountability, enabled by the challenging narratives and experiences brought forward by more intimate understandings of disability.
For instance, in Chernobyl, the state was held accountable in novel ways through the creation what Petryna calls ‘biological citizenship’ whereby ‘citizens have come to rely on available technologies, knowledge of symptoms, and legal procedures to gain political recognition and access to some form of welfare inclusion’. Here, disability and its recognition become a form of negotiation from individuals and groups and the state to rewrite narratives, or have their realities acknowledged.
To conclude, the state can be considered responsible for the existence of disability in so far as it enables it to exist legally and socially. This power to enable something to exist however is problematic because to be able to enable implies the power to disable. Thus, the state can shape reality by choosing what exists, what is recognised, and what is not. Yet, precisely because of this responsibility comes accountability. This accountability comes in various forms – such as kinship groups, advocacy groups, disability scholars, disability movements – but ultimately limits the state’s power of the identities and agencies of disabled individuals.
Bibliography
Stoler, Ann. (2004). Affective states. In D. Nugent & J. Vincent (Eds.), A Companion to the Anthropology of Politics, 4-20. Oxford: Blackwell.
Biehl, João 2005. Vita: Life in a Zone of Social Abandonment. University of California Press: Berkeley.
Ralph, L. (2012). What wounds enable: The politics of disability and violence in Chicago. Disability Studies Quarterly, 32(3).
Rapp, R., & Ginsburg, F. D. (2001). Enabling disability: Rewriting kinship, reimagining citizenship. Public Culture, 13(3), 533-556.
Davis, E. A. (2012). Bad souls: Madness and responsibility in modern Greece. Duke University Press.
Petryna, A. (2013). Life exposed: biological citizens after Chernobyl. Princeton University Press