Can the subaltern speak? Visibility of international migrants with communication and swallowing disabilities in the World Report on Disability

Abstract

Wylie, McAllister, Davidson, and Marshal (2013) argued that the speech-language pathology profession must be encouraged to consider novel ways to deliver equitable services to people with communication disorders. People with communication disorders include the world's 215 million international migrants who deserve unique commentary when considering disability in the world. Hence, this paper focuses on invisibility of international migrants with communication or swallowing disorders in the World Report on Disability. The analysis of people with disabilities is biased towards citizenship. What of those who are non-citizens? Three issues are highlighted: (a) the demographic construction of migrants; (b) management of communication disability within the migrant patient-speech language pathologist dyad; and (c) strategic re-prioritization of dysphagia as a disability. While relevant to all people, re-prioritization of dysphagia as an impairment (of eating or drinking) resulting in restricted mealtime participation is especially relevant to the healthcare of international migrants. This issue is discussed in terms of how safe or adequate eating and drinking ought to constitute essential discharge criteria in medical settings where discharge (often resulting in deportation) may be decided on one's ability to walk or talk.

Keywords::

• World Report on Disability
• World Health Organization
• World Bank
• communication disability
• dysphagia as disability
• migrant workers
• human rights
• globalization
• speech-language pathology and audiology

Do migrants have a voice? Can they be heard?

Subalternity refers to those who, in many contexts across the world, have less power due to reduced access to education, intellect, style of speech, attitudes, and even physical appearance. Previously asked by Spivak (1988), the question of subalternity in this paper is filtered via the World Report on Disability (World Health Organization and The World Bank, 2011) and focused on migrants.

Based on my experiences across South Africa, the UK, and the United Arab Emirates, I argue that the World Report on Disability is inadequate in making visible international migrants with disabilities (henceforth, migrants). Here I argue for greater visibility of migrants with disabilities regarding SLPs two core practice areas: communication and swallowing disorders. To illuminate my argument, consider the case vignettes provided in Supplementary Appendices A–C. found online at http://informa healthcare.com/doi/abs/10.3109/17549507.2012.757708. What do these vignettes reveal? Three issues bear relevance:

• demographic construction of migrants;

• management of communication disability within migrant patient/speech-language pathologist (SLP) dyads; and

• strategic re-prioritization of dysphagia as a disability.

Demographic construction of migrants

International migrants are defined as legal or illegal (irregular) residents in a country that is not their own for at least a year (Fix, Papademetriou, Batalova, Terrazas, Yi-Ying Lin, & Mittelstadt, 2009). Why focus international migrants? There are over 215 million international migrants (henceforth, migrants) (Migration Policy Institute [MPI], 2010), with 105 million being economically active (International Labour Organization [ILO], 2010). Collectively, migrants are bigger than populations of Brazil, Pakistan, Nigeria, Russia, Japan, Mexico, or Germany. If migrants represented a country, they would be the world's fifth largest country after China, India, the US, and Indonesia. Two hundred and fifteen million is not a small number of people. The World Report on Disability under-represents migrants. There is only one explicit reference to migrants working as caregivers of people with disabilities. The World Report on Disability's concern is about migrant caregivers who leave their own families at home to be martyred by the “global care chain” (World Report on Disability, World Health Organization and the World Bank, 2011, p. 145) when they become paid caregivers for people with disabilities in other countries.

Wylie, McAllister, Davidson, and Marshall (2013) acknowledged migrants’ healthcare needs, and their support of a population-based approach is commendable. However, for SLPs, the challenge is how to understand a transient, ill-defined population where perhaps 15% may even be illegal residents (International Organization for Migration, 2010).

One aspect of this challenge for SLPs is to understand the kinds of disabilities that migrants may present with in medical settings. Notably, non-traditional medical reasons like attempted suicides are prevalent amongst migrant workers in countries like the United Arab Emirates (Al-Maskari, Shah, Al-Sharhan, Al-Haj, Al-Kaabi, Khonji, et al., 2011).

Furthermore, given that cardiovascular disease is the world's leading cause of disability (Mendis, Puska, & Norrving, 2011), hospital-based SLPs will be familiar with older adults, post-stroke. However, it is not uncommon for migrants with risk factors like hypertension (Ibrahim & Damasceno, 2012) to present with aphasia. Similarly, migrants are particularly prone to occupational injuries because they mainly work in 3D (dirty–difficult–dangerous) jobs. Indeed, consider how migrants are more likely to end up with communication and/or swallowing disorders because of occupational injuries such as traumatic brain injury, limb injuries, social and mental health problems, infectious diseases, diseases of respiratory and cardiovascular systems, hypertension, heat stress, musculoskeletal disorders, dental diseases, cancer, and chemical- and pesticide-related illnesses (see Barrss, Addley, Grivna, Stanculescu, & Abu-Zidan, 2009; Hanson & Donohoe, 2003; Mendis et al., 2011).

SLPs in in-patient hospital services have a greater likelihood of meeting migrants with the illnesses and diseases stated above. As Wylie et al. (2013) indicated, migrants are part of a medically under-served populations with access barriers to health services. It stands to reason that they are less likely to receive long-term outpatient services or even community-based rehabilitation. Hence, hospitals may be the point of main—but transient—contact between the migrant with disability and the SLP. While migrants share citizens’ spaces and are epidemiologically bound to encounter SLPs, they may remain unseen by SLPs. Hence, migrants’ speech-language pathology services needs may go undocumented, increasing their invisibility. Reasons for why this may occur will be explored next.

Management of communication disability within migrant patient-SLP dyads

What happens when two people, constructed as different, meet? Figure 1 (adapted from Pillay, 2003b) portrays the migrant worker as “sick person” and the SLP as “powerful expert”.

Figure 1. The migrant patient and speech language pathologist (SLP) dyad.

Within these roles, SLPs use a medical gaze (Foucault, 1976) to engage their specialist focus (communication pathology) with migrants. These processes are typical of most clinical encounters such as those in the vignettes. However, for migrants there are unique outcomes when SLPs use processes like scientific reductionism, essentialism, and dis-othering. For a detailed description of these processes see Pillay (2011). Suffice to say that we reduce migrants to a category of ‘pathology’ and end up excluding their realities of being ‘migrants’. They will be treated as Other, not counted in the system because of issues like misdiagnosis (how will a German speaker diagnose an aphasic Vietnamese migrant?) or because of premature and/or inappropriate medical discharge.

Our knowledge base remains mainly reflective of the world's cultural capitals of predominantly Western, white, Euro-American cultures, languages, and ethnicities (Pillay, 2001, 2003a, 2011). As such, what do we do with migrants, people different from ourselves? Perhaps SLPs may consider cultural and linguistic frameworks. Consider Supplementary Appendix C to be found online at http://informa healthcare.com/doi/abs/10.3109/17549507.2012.757708, where communication is understood as “typical” of Arab men, not as reflective of a pragmatic communication disorder. Perhaps SLPs may legitimize racist practices neutralized as science when using structured assessment frameworks (Pillay, 1998; Pillay, Kathard, & Samuel, 1997). This kind of practice occurs in less overt ways too when we, for example, clinically profile “Hispanics” or “African-Americans” based on generalist assumptions that they will all communicate in pre-determined patterns. For migrants (and others), such a science may not benefit their service needs. For example, one solution to manage language barriers is to linguistically match patients and SLPs. Similarly, standardized tests (e.g., American or British English assessments) may be translated and adapted. However, just how practical are these strategies for migrants?

SLPs are scarce resources worldwide (see Wylie et al., 2013). Language-matching, test adaptations, and translations represent strategies suited to the interests and resources of Northern hemisphere natives and their allies (Taylor, 1986). The Northernness (Meekosha, 2011) of these solutions to language and cultural complexities signify far deeper paradigmatic crises for SLPs. The myth that monolingualism is a world phenomenon has resulted in a professional education curricular where SLPs are trained to be competent—but only in their language. I propose that we manage the reality of multilingualism and educate SLPs to become self-sufficient trans-linguistic practitioners (TLPs). What will a TLP do differently? Operating from a theoretical and clinical skill-set TLPs may deal directly with linguistic or cultural system(s) irrespective of their own language histories. As someone who has worked with languages from Arabic to Zulu, I believe that migrants with communication disorders can be assessed, managed—and heard—by a competent TLP. Practically, we may develop quick interactive communication skills for clinical purposes, apply the international phonetic alphabet for speech analyses, use conversational-communication analysis frameworks, rely on electronic resources like portable translators and commonly accessible internet tools, use symbols on paper or other symbol and visual languages. Mostly, we may skillfully work as communication (not just linguistic) scientists with people in our clients’ language networks as communication resources to develop valid clinical resources. Theoretically, we need to shift traditional paradigms from quantitative, empirical, norm-based knowledge toward ecological, criterion-referenced, trustworthy qualitative frameworks.

We are not teachers of a specific language like English. As communication practitioners, we have the knowledge and skills to expertly analyse and manage any communication system.

Re-prioritizing dysphagia as a disability

Dysphagia is as an impairment of eating and drinking resulting in restricted mealtime participation. Strategic re-prioritization refers, here, to how dysphagia ought to be promoted as a disability for migrants. However, surely this is relevant for all people with dysphagia? Of course it is. The difference for migrants is that strategic re-prioritization in a medical setting is where disability may be made visible. For citizens, their dysphagia may become prioritized later in their healthcare trajectory, for example, when re-admitted for aspiration pneumonia. However, why is such re-prioritization important? Critically, workers’ compensation is facilitated via medical reporting of disability. There are also implications for deportation and follow-up rehabilitation care. By not screening dysphagia, or not recognizing aspiration risks and so on, migrants may never even see an SLP. Indeed, they may be discharged from medical and even rehabilitation care without being assessed for their dysphagia or aspiration risk. Given the medicalized nature of dysphagia, this disability needs to be focused separately and not, as Wylie et al. (2013) have done, diffusing dysphagia within the grander argument on communication disorders.

With increased sensitivity to patients’ rehabilitation needs, discharge criteria may include patients’ ability to mobilize (e.g., walking with assistance). In Supplementary Appendix B to be found online at http://informahealthcare.com/doi/abs/10.3109/17549507.2012.757708, NT was discharged “walking-not-talking”, with enteral feeds, an aspiration risk, and severe cognitive-communication impairment. However, even though dysphagia is life-threatening, experience has shown that migrants with dysphagia lie in a medical twilight zone. Given their health status, they are not sick enough to remain hospitalized, nor do they appear disabled enough because they lack the tangibility of, for example, missing limbs, injured eyeballs, or shattered eardrums. Indeed, dysphagia may be more invisible due to international policy standards. For example, the Joint Commission in the US has included a standard for the screening of dysphagia in people post-stroke. This standard has been dropped by its international arm, the Joint Commission for International Accreditation (JCIA), which is used in over 90 countries (Joint Commission International, 2010); enabling the denial of dysphagia as a legitimate disability for migrants. Hence, they appear medically clear and not disabled, ready for discharge.

Hospital-based SLPs are likely to agree that migrants are discharged when deemed medically stable. However, unlike citizens who may be discharged to other services like rehabilitation units or outpatient services, for a migrant, discharge often means deportation back to one's home country. Dysphagia is well established within the medical model, treated in acute care, but is not as well managed as a disability of eating and drinking within a bio- psycho-social model. This means that several challenges exist within dysphagia rehabilitation for the migrant worker. How do SLPs integrate migrant workers back into their lives when they are deported? Migrants are arguable worse off than citizens with dysphagia. Hence they do warrant a special case when we consider answers to questions such as: How does one prescribe a food thickener across borders (see Supplementary Appendix B to be found online at http://informahealthcare.com/doi/abs/10.3109/17549507.2012.757708) in countries where food, let alone a thickening agent, is scarce? When family is non-existent, who will prepare pureed solids in a labour camp? It is incumbent that SLPs emphasize dysphagia as a disability and strategically re-prioritize dysphagia for the disability that it is.

Conclusion

Recommendations in the World Report on Disability are based on assumptions that people with disabilities are fixed members of society, nationals possessing full citizenship. As such the status of the migrant in the host country regarding healthcare rehabilitation (including speech-language pathology) is minimized. Modern rehabilitation demands practices beyond the individual, into social and political realms of people with disabilities. The migrant who acquires a disability after having crossed national borders without claims of citizenship in the host country may be stranded with restricted access to healthcare services, evoking Ondaatje's (1992, p. 116) notion of the “international bastard”. The World Report on Disability references to how the responsibilities of families, communities, countries, and organizations are faulty for migrants.

So, once migrants are disabled and no longer useful in the host country, does the migrant have access to healthcare services equal to that of the citizenry? Can the migrant lobby the powerful and influence policy change? Can the migrant argue for improved access to rehabilitation or healthcare? The answers lie in the fact that (instead of bringing in dirhams and dollars), disabled and deported, they return as burdens to their families, communities, and countries.

The Word Report on Disability is a product of an alliance between The World Health Organization and the World Bank. The World Bank is respected, usually by its primary beneficiaries in Minority World economies. However, it is also feared, usually by citizens of the Majority World. Here, countries suffer immense debt burdens and harsh economic policies like Structural Adjustment Programs imposed by the World Bank and International Monetary Fund—even when poverty reduction strategies are implemented (Dijkstra, 2011). Repatriating and compensating for disabilities is an expensive business. Overlooking migrants favours big business and governments. Minimizing the focus on migrants means governments, multi-national or transnational corporations, and their employing agencies are allowed to shirk their responsibilities to over 215 million people. For migrants who have moved to a new home and actively contribute to the creation of wealth in the host country, a document like the Word Report on Disability does nothing to serve them. So: “Can the subaltern speak?” Indeed, are migrants heard? The current answer is a flat “no”.

Change in SLP practice, education, and policies will be incomplete if we ignore disability and migrants. Managing migrants by a profession focused on facilitating marginalized voices to the centre of citizenship will indicate a change of SLPs’ engagement with social justice at an international level.

Declaration of interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper.