Widening the SLP lens: How can we improve the wellbeing of people with communication disabilities globally

Abstract

This article responds to by arguing that the wellbeing of people with communication disabilities in the global south will be improved if speech and language pathologists widen their lens considerably. The numbers of speech-language pathologists (SLPs) in the Majority World is and will remain infinitesimally small. Therefore, to make any meaningful impact the profession needs to engage in debates and activities outside the health and service provision arenas, getting involved cross-sectorally and at various policy levels. It is contended that, although the World Report on Disability is a useful summary of the status quo, actually SLPs need to harness two other seminal documents: The International Classification of Functioning, Disability and Health and, more particularly, the United Nations Convention on the Rights of People with Disabilities in order to drive change. Historically the profession's focus has been on impairments, and current moves to social models are welcome. However, SLPs need to embrace human rights approaches and broader frameworks of inclusive community development, using global initiatives such as community-based rehabilitation to improve the lives of people with communication disabilities. Why SLPs should become critically engaged, particularly at the macro level, is explored.

Keywords::

• World Report on Disability
• communication disability
• human rights
• community based rehabilitation
• inclusive community development

Introduction

The World Report on Disability (World Health Organization and The World Bank, 2011) is the first report of its kind and lays out compellingly the facts available to date about disability globally, as well as highlighting the data which is currently missing. The lead article in this issue (Wylie, McAllister, Davidson, & Marshall, 2013) is an interesting and useful overview of the specific issues facing speech-language pathologists (SLPs), especially in low income regions globally. I find the organizational change model used a potentially enlightening approach to thinking about the complex issues involved in considering ways to improve the lives of people with communication disabilities (PWCDs). The macro/meso/micro levels proposed provide a good structure for analysing this complexity. However, I feel that the focus overall is narrow and that the macro socio-political issues have been under-represented and insufficiently discussed, perhaps due to the word limits of the paper.

The World Report on Disability ends with a list of recommendations for action; however, these are quite general and there is no specific guidance as to how these might be achieved. Wylie et al. (2013) draw on the World Report on Disability and address these recommendations, but in quite a limited way, concentrating mainly on service provision issues. In this paper I will argue that SLPs need to broaden their focus to consider wider aspects of the disability arena, of inclusive development for the benefit of people with communication disabilities. I will address the profession's potential engagement with the more diverse issues covered in the body of the World Report on Disability and suggest that it is not so much a population level focus that is needed by SLPs but a human rights one. Therefore, it is the International Classification of Functioning, Disability and Health (ICF, World Health Organization, 2001), the United Nations Convention on the Rights of People with Disabilities (UNCRPD, United Nations, 2006), and subsequently the new re-conceptualization of community-based rehabilitation (CBR, World Health Organization, 2010) as a vehicle for implementing these which are likely to have great influence and be important tools, rather than the World Report on Disability itself, in improving the wellbeing of PWCDs (Barron & Amerena, 2007). SLPs could and arguably should be engaged with and provide a valuable contribution to these international drivers of change in the disability arena, particularly in the global south.

Which model?

As the lead authors describe, there are a number of models of disability which sometimes appear to compete in unresolvable ways, particularly in academic disability discourses. For example, Oliver (1996, p. 42) famously declared that “disablement was nothing to do with the body”, implying then that it is purely created by society. The most commonly cited dichotomy is the medical model vs the social model, although this is reductionist as in fact there have been various iterations and interpretations of both of these. Clearly it is not sensible to force a choice between these two models as both have important aspects to contribute. In disability theory literature, there was a tendency in the 1980s and 1990s to turn completely away from medical models and from concerns about impairment (Mercer, 2002; Oliver, 1996). However, more latterly there has been increasing recognition that impairment does affect people's lives significantly, and that provision of impairment-related services is important to individuals (Shakespeare, 2006; Thomas, 2004).

The ICF (WHO, 2001) as a biopsychosocial framework clearly attempts to combine aspects of the various models. It sets out to ensure that all the factors in disablement: Health conditions, Impairments, the disabling impacts of reduced Activity and Participation as well as Personal and Environmental factors are all considered separately in addition to being linked together when appropriate. As Wylie et al. (2013) hint, despite being a decade old the ICF is generally poorly known and understood even by those working in the disability (or impairment) fields. It would be helpful if the framework and its concepts could be used more distinctly and accurately. This might enable lay people, practitioners across sectors, and policymakers to understand how disablement operates as a whole to impact on people's lives and what could be done to mitigate these effects at different levels, both individual and societal.

The other important approach to disability which has gained currency more recently is the Human Rights approach. This has acted both as a generator of and as an outcome of the UNCRPD (UN, 2006). Perhaps in contrast to the previous models this very clearly works at the meso and macro levels as well as at the micro (individual) level. It promotes the realigning of the perceptions of individuals, communities, and policymakers (locally, nationally, and internationally) about the essential humanness of disabled people and, therefore, their equal rights as citizens, however “different” they may appear. It underlines their entitlement to the same privileges, services, and opportunities as others, but also points out that sometimes, in order to achieve equality, extra resources (e.g., adaptations, equipment, legal protection, time) must be provided.

Community-based rehabilitation (CBR) was originally focused mainly on health interventions for disability (Helander, Mendis, & Nelson, 1980). However, this has been expanded and reconceptualized recently, as described in the new guidelines (WHO, 2010). CBR is now branded as essentially “inclusive community development”, and promotes the involvement of disabled people in decision-making and action across all sectors. It is divided in the new matrix model into five domains (e.g., health, education, livelihoods, social, and empowerment) and is now seen as a natural vehicle for the implementation of the UNCRPD and, therefore, as essentially espousing and driven by a Human Rights approach. Although impairment-targeted services may be among the activities undertaken, there are many other aspects of CBR which are of equal or often of more importance. Specialists such as SLPs, therefore, need to re-imagine and re-negotiate how they can contribute to this broader interpretation of rehabilitation, rather than remaining siloed in the health sector and only concerned about impairment-related aspects of a disabled person's experience. The use of the terms “speech and language (therapy or pathology) services” are thus problematic in the new CBR, as they imply a focus on impairment, which medicalizes people's situations. Hartley (1998) suggests the term “communication disability” and I agree that is more neutral, and arguably less pathologizing, focusing on disability rather than impairment.

What kinds of intervention or change do disabled people want?

When asked about their lives and what would improve them, disabled people, especially in poor countries, tend to talk more about poverty, discrimination, and exclusion than about service provision (Barron & Amerena, 2007; Coleridge, 1996; World Health Organization and The World Bank, 2011) and clearly there are some links between the negative experiences disabled people have and their specific impairment. Having impairments has functional impacts but it also embodies people as different. Differences in bodies or minds mark people out in ways which they usually cannot control or hide from others. The social and psychological impacts of being perceived as different can be catastrophic, especially in some societies (Reeve, 2006; Thomas, 2004).

Of course impairment-based intervention has a place in the picture. Facilitating functional improvements for a person is likely to have the knock-on effect of decreasing stigmatization and exclusion (e.g., by making inclusion in school, work, or social life possible), and therefore probably improving economic and social wellbeing. However, for most disabled people intervention focusing on their impairment will not make them “normal”, and thus other people's negative attitudes to their perceived “difference” continue to be a core determiner of their experience. Fundamentally, interventions which focus on enabling and empowering disabled people's activities and participation are more challenging to implement and evaluate than impairment-focused work, because they involve changing society's attitudes. However, arguably actions to reduce stigma and isolation are more likely to change disabled people's lives for the better in the long-term.

People with communication impairments and disabilities

People with communication disabilities are clearly in the particularly difficult position of being at the bottom of the “hierarchy of impairments” (Deal, 2003): a pecking order which is active both on “the inside” amongst disabled people themselves and from “the outside” by those who are not disabled. This is actually a hierarchy of exclusion. The World Report on Disability (World Health Organization and The World Bank, 2011) underlines the widespread perception that those with physical or visual impairments tend to be less excluded from society than those with cognitive, communication, or behavioural difficulties. People who behave, think, or communicate in atypical ways are easily consigned to the margins in communities and become liminoid (Murphy, Scheer, Murphy, & Mack, 1988). This seems to make it acceptable to deny their humanness and treat them in ways that would clearly be unacceptable if applied to other types of people. They are thus denied their human rights in the most fundamental of ways.

Several authors have described the apparent difficulty that people without impairments have in imagining the lives of those who are impaired (Albrecht & Devleiger, 1999; Mackenzie & Leach Scully, 2007). Here, however, the hierarchy of impairments is also enacted. For unimpaired people it is relatively easy to understand and empathize with physical difference. For example, it might be easy to imagine what it would be like not to walk and therefore to understand the need to remove physical barriers and introduce ramps, rails, lifts, etc. However, if a person's behaviour and communication appear very different, this strikes at the heart of others’ ability to see them as someone with ordinary feelings, aspirations, and experiences, in fact perhaps to see them as a person, as human. To use an anthropological term, their personhood and hence their citizenship is endangered (Hughes, 1999; Murphy et al., 1988). It is harder to imagine what communication barriers might be and how they could be removed. Encouragingly, some work on raising awareness of these invisible barriers and on expanding the concept of access is taking place (Worrall, Rose, Howe, Brennan, Egan, Oxenham, et al., 2005). Arguably, however, we need to expand the role of SLPs to lead, advocate, and educate others about what the equivalent of ramps and rails for those with communication impairments could be. It seems that a lack of speech for instance is often understood as a lack of language and therefore as a lack of thoughts, ideas, and sensitivities.

This stigmatization of people with communication impairments is an often unrecognized and insidious form of disablism, but is actually seemingly commonplace across cultures. In different cultural contexts it may be operationalized and justified in a variety of ways, which clearly intersect with long held traditions and religions and is enacted through local beliefs, attitudes, and practices (Ingstad & Reynolds Whyte, 1995).

The UNCRPD (UN, 2006) is a ground-breaking treaty as it reiterates for the first time the already existing entitlement of people with disabilities to the same rights as everyone else. As member states (countries) sign, ratify, and start to implement its articles it will begin slowly to reduce the most blatant forms of discrimination. However, some countries will find this challenging and may make little progress, at least in the short-term (Lang, 2009). Moreover, more subtle forms of exclusion leave people at the bottom of the hierarchy of exclusion, such as those with communication disabilities, extremely marginalized, and they are likely to remain so.

Reeve (2006) and Thomas (2004) have identified what they call psycho-emotional or social-relational disablism, which insidiously leaves the disabled person feeling undermined and worthless. People with communication impairments, because they are at the bottom of the hierarchy of exclusion, are more likely to continue to be denied their human rights than other disabled people. For example, they are denied their right to participate in education and work, community, and political life, to access healthcare, social protection, and justice, because their communication differences mean they are often denied personhood.

What can SLPs do?

The lead article cogently gives us the facts about how many SLPs there are globally as far as we know, and identifies the gaps in the data about disability generally. Here it is important to emphasize that the major explanation as to why 80% of disabled people live in the Majority World is because that is where 80% of the global population live! Wylie et al. (2013) also summarize the current scant state of knowledge about the prevalence of people with communication disabilities globally, but particularly in low-income countries. However, although these numbers are shocking as presented, they are to some extent meaningless or perhaps of little help. For example, figures such as one SLP per 2–4 million effectively tells us that there is no SLP profession in X country, but it does not tell us who PWCDs do go to for help or how disabled they are by their situation in their particular cultural context. There are many countries and regions globally where SLP does not exist as an established profession, and indeed is not known as a concept.

This is not to deny the great work done by very small numbers of SLPs working single-handedly in some countries. However, PWCDs in countries without established SLP professions or services often receive at least some support and from a variety of different sorts of people. Wylie et al. rightly list a number of personnel who may fulfil this role, but they seem to focus on impairment-related support rather than a wider range of help which may be offered. The authors do not acknowledge some of the most important actors, for example the large number of generic CBR workers who have not been trained specifically about particular impairment categories or specific conditions (i.e., unlike Nagarajan's cleft trained workers described in Sell, Nagarajan, & Wickenden, 2011). The majority of CBR field staff will have had general training about disability and possibly a small amount of general information about good communication strategies. They are therefore better equipped to intervene at the activity and participation levels of the ICF (WHO, 2001) and perhaps within a Human Rights model rather than at the impairment level.

I am not convinced that using scarce disability-focused research resources to collect further data on the numbers of SLPs or on prevalence is necessarily a top priority at the moment. In recognition of the need for some better epidemiology of disability globally, an important trend is that many countries are currently introducing a small number of disability questions into their national censuses (e.g., World Report on Disability, World Health Organization and The World Bank, 2011, p. 23). So too are some of the big multi-country health surveys such as the Demographic and Health Survey (DHS, 2012). The UN Washington group on disability (Altman, 2006) have been working on using the ICF to achieve a more detailed breakdown into accurate categories of difficulty in functioning across six domains (seeing, hearing, mobility, cognition, self-care, and communication) for use internationally, but this is work in progress (World Health Organization and The World Bank, 2011, p. 26). The fact that communication is separated out from hearing in this work is encouraging and, as this tool becomes used widely, more accurate statistics about the numbers of PWCDs will emerge. Collection of more detailed data about sub-groups within the domain of communication impairment seems like a distant goal at present.

I am not even sure that the term underserved is useful, as it implies that providing a fully trained SLP service in sufficient numbers (whatever they are) would solve the problem in low income settings. I realize that this is not what Wylie et al. (2013) are suggesting, but calling the provision needed “SLP services” may make their actual underlying message about communication disability somewhat unclear to the uninitiated. My own research with disabled teenagers using augmentative and alternative communication (AAC) in the UK taught me that the young people and their families talked relatively little about the impact of therapists and therapies on their lives and much more about the impact of society, both negative or positive (Wickenden, 2011a). Being acknowledged as a person and as a citizen is the most important thing for them (Watson, 2002). Similarly, small studies I have been involved with, with mothers of disabled children in India and Sri Lanka, reveal similar findings. For instance the mothers were more concerned about their child being accepted in their community and in school than in changing their impairment.

When is introducing an SLP profession appropriate?

There is great variation in the way that specific specialist professions and services start and evolve across countries and regions globally. There are many factors which might be important in the initiation of the formal or structured development of SLP (profession or services) in a country, as opposed to tiny pockets of activity by visiting expatriates or returning local but foreign trained therapists. Of course these latter individuals may be crucial precipitators or initiators of a training course or service, often alongside powerful allies in the medical profession who may have done their specialist training abroad and thus have experienced working with highly trained SLPs in highly resourced settings. These two groups’ motivation to replicate this service is not questionable. It is born out of desire to provide a highly technical therapy service to individuals who would undoubtedly benefit. However, these beneficiaries would be the minority of PWCDs. Starting the process of developing a specialist profession without initial or simultaneous development of broader disability awareness, rights and services is unlikely to be successful unless other aspects of national development are conducive. Access to information and rehabilitation for most of the population will remain poor, only available to the urban elite and national coverage will not be achieved. Some of the broader factors which will be important within countries include:

• General levels of political stability, government capacity, corruption, national debt, human rights adherence (e.g., these measured variously by Gross Domestic Product, Human Development Index, Transparency International corruption rating), implementation of key UN Treaties (e.g., UN Convention on the Rights of the Child (1989), UN Convention on the Rights of People with Disabilities (2006)), life expectancy, maternal and under 5s mortality rates, school enrolment, literacy levels, etc. (e.g., see UNESCO country profiles for examples);

• Levels of awareness and lobbying activity about disability generally;

• Awareness about communication disability and its potential impacts on individuals’ lives;

• Levels of coverage, efficiency, and sophistication of primary health system, education, and social services;

• Existence of secondary and tertiary healthcare with at least some specialist services such as ENT and neurology working well;

• Existence and effectiveness of maternal and child continuous care, early child development care and education, social protection schemes for disabled people, nutrition, and pro-poor policies; and

• University level expertise in psychology, linguistics, health sciences, and perhaps disability (e.g., special education, other therapies etc.).

Positive profiles in relation to some or preferably all of these factors would perhaps be indicative that a country will have both the capacity and structures in place to consider initiating development of a specialist profession or service to serve people with communication disabilities specifically. Pressure just to develop these specialist services in isolation without a broader focus on disability rights needs to be strongly resisted in order that the benefit will be for the whole country not just the privileged few.

Thus I argue that the drivers for change in provision of services for PWCDs are not the World Report on Disability but the ICF (WHO, 2001) and the UNCRPD (UN, 2006) and a key way of implementing these is the new CBR inclusive development movement. However, the success of these initiatives in driving change will be affected further upstream by the country-specific aspects listed above. Disability then needs to become part of mainstream development initiatives rather than a separate and highly specialized sub-topic (Groce, 2006). Additionally it is important that the conceptual gaps in understanding which exist between different stakeholders in the disability arena are closed. At present, disability activists, disability theorists in the academy, rehabilitation practitioners, and policy-makers rarely come together or speak the same language, although of course often their overall aims for disabled people are similar (Wickenden, 2011b).

It may be that the development of impairment-specific services is not appropriate or possible in some settings, unless and until some of these other fundamental markers of development and indicators for development of specialist services have progressed. Thus, models of rehabilitation which focus on activities and participation, that is on human rights more explicitly, may be the first stage in the process of developing services for PWCDs (Sell et al., 2011).

A broader role for SLPs?

I propose two perhaps heretical ideas in relation to the development of the SLP profession and of services for PWCDs globally. First, individual impairment focused therapy in its conventional form is not what will make the most difference to people with communication disabilities in low income countries where poverty and exclusion are the biggest issues.

Second, SLPs as a professional group need to get much more involved in changing understandings about and attitudes to people with communication disabilities at both the individual and structural levels. They can use the UNCRPD (UN, 2006) as a tool which has more teeth than the World Report on Disability, although some would say rather blunt ones, to support this process. Human rights arguments about the rights of disabled people as citizens would then be the main drivers for change.

There is a need for SLPs and their organizations, whether professional groups or employers, to look outwards and link with a broader range of actors and agencies in their aim of promoting the rights and needs of PWCDs. Indeed there need to be more links between the professional SLPs organizations in the Minority and Majority Worlds. It is noticeable that most of the global initiatives and conversations about communication disability are held between SLPs in high income countries, rather than being inclusive of those more recently established groups in low income countries. These groups are generally isolated and unable to attend conferences held in the global north. In fact, capacity building these new emerging professionals in low income countries to engage in the wider debates, to attend conferences, and publish about their situations should be part of the agenda.

SLPs need to be active in precipitating change not just “at an individual level, and in our workplaces and professional practices” as Wylie et al. (2013,. p. 1) suggest, but at the structural levels beyond clinical practice. They may or may not be employed within the health sector, but they should certainly see their sphere of influence and operation as potentially across all the sectors and up to the highest (macro) levels in relation to attitude change and policy development. They could then see themselves and be seen as providers of specialist technical assistance and as capacity builders of other service providers rather than solely as clinicians working with individual clients. This cross-sectoral approach is described and advocated in the World Report on Disability (World Health Organization and The World Bank, 2011, p. 253).

The World Report on Disability puts repeated emphasis throughout on the importance of environmental factors which are an aspect of the ICF model which arguably has been under-used to date. Attitudes and beliefs towards disability within communities come under this banner. SLPs could be influential in changing these and advocating very actively for people with disabilities if they chose to embrace this role. Further they could provide support for Disabled People's Organizations (DPOs), specifically to ensure that people with communication disabilities are included in empowerment and lobbying activities alongside those with other types of impairment. If SLPs provided capacity-building training with PWCDs so that they had the skills and confidence to lobby and self-advocacy within political arenas, this would help PWCDs to bring about the emancipatory change they want. Thus, SLPs could work in a more empowering way, in order to disrupt the existing hierarchy of exclusion which currently prevents PWCD from taking up equal roles in society at the micro, meso, and most importantly at macro levels. Of course the lead article suggests much of this, and so we are in agreement. However, I am perhaps suggesting an even more radicalized approach from SLPs. They need to be part of the movement to bring disability from a marginalized and specialized position into mainstream development, so that disabled people's needs are seen as the concern of all community members, service providers, and policy-makers, not just specialists or healthworkers (Groce, 2006). Crucially of course this broader role needs to be clearly articulated and taught within the curriculae of all SLP training programs. As Werner (1995), the renowned CBR pioneer, suggests, professionals should learn to be “on tap not on top” (p. 26).

Conclusion

Thus, I suggest that SLPs could broaden their lens and become much more political animals. Several other professions have espoused the idea of being “critical” in the politically activist sense (e.g., critical psychology, Fox & Prilletensky, 1997), and perhaps SLPs need to develop this more pro-active edge too?

Of the questions posed by the lead authors as important to answer, I suggest that the last one listed is by far the most important:

How can the SLP profession be responsive to the needs of under-served PWCD, in ways which will influence change to improve policies, services, and practices, and promote equity?

Indeed an additional one might be:

How SLPs can engage with human rights and mainstream development agendas in order to empower PWCDs to make changes to their lives at the micro, meso, and macro levels?

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