The International Communication Project: Raising global awareness of communication as a human right

Abstract

Communication as a human right is embedded within Article 19 of the Universal Declaration of Human Rights; however, there is a need to raise global awareness of the communication needs of those with communication disorders. In 2014, the six national speech-language and audiology professional bodies that comprise the Mutual Recognition Agreement (MRA) launched the International Communication Project (ICP) to help raise awareness of communication disorders around the world. Since its inception, the project has engaged close to 50 organisations from diverse regions, and has undertaken a number of initiatives, including development of the Universal Declaration of Communication Rights. A consultancy report was commissioned to inform ICP efforts to influence international policy bodies. As a result, the current focus of the ICP is to identify opportunities to influence the policies of organisations such as the World Health Organization, the United Nations and World Bank to more explicitly acknowledge and address communication as a human right. This commentary paper describes the work of the ICP to date, with an emphasis on the place of communication disorders in current international policy and potential pathways for advocacy.

Keywords:

• Article 19
• United Nations
• Universal Declaration of Human Rights
• speech-language pathology
• audiology
• communication rights
• World Health Organization
• World Bank

Introduction

In this, the 70th anniversary year of the Universal Declaration of Human Rights (United Nations, 1948), it is timely to consider whether the declaration is truly universal, and whether Article 19 adequately addresses the needs of those with communication disorders. Article 19 sets down the right to freedom of expression and to “see, receive and impart information and ideas through any media”. This could be seen to encompass those with communication disorders, but there is no explicit recognition of their unique needs. Based on the shared belief that communication is a basic human right, the International Communication Project (ICP) was conceived during the 2010 International Association of Logopedics and Phoniatrics (IALP) Congress in Athens, Greece. The founding organisations are the current six associations who previously collaborated to develop the Mutual Recognition Agreement (MRA), an agreement to mutually recognise professional credentials. The organisations are the American Speech-Language-Hearing Association (ASHA), the Irish Association of Speech & Language Therapists (IASLT), the New Zealand Speech-language Therapists’ Association (NZSTA), the Royal College of Speech and Language Therapists (RCSLT), Speech-Language & Audiology Canada (SAC), and Speech Pathology Australia (SPA).

The highly valued, collegial relationships developed amongst these six organisations in formulating the MRA led to an interest in exploring further collaborations. With an agreed commitment to help raise global awareness of the impact of speech-language-hearing and related disorders and to advocate for access to services and supports for those with communication disabilities, the ICP was launched in 2014. The ICP highlights the importance of human communication and the significant impact of communication disabilities on every aspect of life. It joins organisations around the world in advocating for people with communication disorders and raising the profile of communication disabilities.

Initial ICP activities included: launch of an ICP website http://www.internationalcommunicationproject.com/; exhibits and presentations at global conferences and meetings, inviting colleagues from other countries and organisations to participate; development of and outreach to encourage signatories to the ICP-initiated Universal Declaration of Communication Rights http://www.internationalcommunicationproject.com/get-involved/sign-the-pledge/; globally aimed, awareness raising media outreach; and a 2014 Google Hangout Event “Raising Awareness of Communication Disorders as a Global Health Issue” https://www.youtube.com/watch?v=0SBYUNAHggw that drew an audience of over 700,000.

To date, over 50 organisations participate in the ICP (including the International Association of Logopedics and Phoniatrics (IALP), Comité Permanent de Liaison des Orthophonistes-Logopèdes de l’UE (CPLOL) and organisations from Africa, the Asia Pacific region, Europe, North America, Scandinavia and the United Kingdom). The Universal Declaration of Communication Rights (now posted in 13 languages) has over 10,000 signatories. As it has evolved, the ICP has extended its reach through social media, publishing a quarterly online newsletter and planning digital campaigns focussed on communication health.

In 2016, the ICP commissioned Weber Shandwick, a global public relations firm, to develop a framework to guide the ICP in advocating for a higher profile and status of communication disabilities with international bodies and policy makers, aiming to secure explicit recognition of communication disabilities in world health policy (Weber Shandwick, 2016). Consequently, the current focus of the ICP is to influence international health and disability policy through interaction with world health policy bodies such as the United Nations and the World Health Organization. Knowledge of current statements on and resources related to communication disabilities held by these international bodies is a critical underpinning to advocacy efforts. Initiatives of both the United Nations and the World Health Organization related to communication are briefly summarised in the remainder of this paper, and ICP involvement or potential for involvement discussed.

The United Nations

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006) was adopted in December 2006, following decades of work by the United Nations to change attitudes and approaches to persons with disabilities. The Convention is a human rights instrument with an explicit, social development dimension, advocating that all persons with all types of disabilities must enjoy human rights and fundamental freedoms. As of April 2017, the Convention has 160 signatories and 173 parties (including 172 states and the European Union), an increase from the original 82 signatories. The CRPD is an international treaty that identifies the rights of persons with disabilities, as well as the obligations on States Parties (signatory countries) to the Convention to promote, protect and ensure those rights. The Convention also established two mechanisms: the Committee on the Rights of Persons with Disabilities, established to monitor implementation; and the Conference of States Parties, established to consider matters regarding implementation. The States Parties have a range of general and specific obligations regarding the implementation and monitoring of the Convention, with periodic reporting requirements. Civil society organisations also play an important part in the monitoring of the Convention at the international level and in informing response and activities at national levels. Throughout the process of the Convention’s negotiations and subsequent implementation, organisations of persons with disabilities and other non-government organisations (NGOs) have been active in providing comments from a ‘lived experience’ disability perspective. It is through these channels that broader organisations, including professional bodies such as those for speech-language pathology and audiology professions, can provide input and advocate for particular responses. In the recent reporting cycle, both the Royal College of Speech Language Therapists and Speech Pathology Australia contributed to civil society submissions, providing the opportunity to advocate specifically around communication as a human right and the need to enable those with communication disability to fully access and participate in society.

The Sustainable Development Goals (United Nations General Assembly, 2015) aim to build on the progress made under the Millennium Developmental Goals (https://www.un.org/millenniumgoals/). Seventeen goals and 169 targets have been set. The United Nations aims to achieve these ambitious, global goals for the eradication of poverty, hunger, injustice and violence, and achievement of universal literacy by 2030. The large number of goals and targets has been seen as a potential challenge, and a call for prioritisation has been made (Brende & Høie, 2015). A framework designed to facilitate thinking around interaction between the goals has been proposed (Waage et al., 2015). This framework situates 16 of the goals within concentric circles, the innermost being people-centred, wellbeing goals. The need for data, including baseline data, is recognised (United Nations General Assembly, 2015).

The release of the Sustainable Development Goals provides an opportunity for the ICP to raise awareness of communication and swallowing disorders at the level of national and international policy. However, communication and swallowing disorders “lack visibility” within the United Nations statement (Weber Shandwick, 2016, p. 7). The challenge for the ICP therefore is twofold – to identify goals for which the relevance of communication and swallowing disorder can be best demonstrated, and to advocate for greater visibility of both the disorders and speech-language pathology and audiology professions within this international initiative.

The Sustainable Development Goals were discussed within the ICP Strategic Advisory Committee in early 2017. The committee recognised the need for data to support advocacy attempts, with specific reference to the Sustainable Development Goals, and formed a working group, the International Evidence Policy Group, with representatives from each member association. This group is tasked with consideration of the Sustainable Development Goals with relation to communication disabilities, and with identifying existing and emerging evidence that may be used to support the work of the ICP.

Three of the Sustainable Development Goals, all classed as people-centred by Waage et al. (2015), were identified as potential contexts in which communication and swallowing disorders could be brought to the attention of international policy makers. These were:

#1. End poverty in all its forms everywhere;

#3. Ensure healthy lives and promote well-being for all at all ages;

#4. Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all.

The targets relating to each goal were examined. No targets identified for these goals specifically mention communication and swallowing disorders. Within Goal 3 no targets that could be extended to communication and swallowing disorders were identified. Within Goals 1 and 4 some targets can be interpreted in ways that support the case for communication and swallowing disorders.

Further, there were statements within the Resolution which can be used in justification of advocacy campaigns in a general sense. These include:

• A lifespan framework (covering individuals of all ages, indigenous peoples, refugees and displaced people);

• A commitment to the prevention and treatment of a range of non-communicable diseases, including behavioural, developmental and neurological disorders;

• Recognition that access to life-long learning opportunities should be available to all people, and especially those in vulnerable situations.

A case can be made for the importance of communication and swallowing disorders from each of these perspectives. Advocacy efforts and materials developed by the ICP will highlight these aims.

World Health Organization

The World Health Organization was established in April 1948 as an agency of the United Nations, concerned with international health issues. The first meeting of the World Health Assembly was held in July 1948. The World Health Organization is financed through assessed contributions from Member States (accounting for approximately 25% of the operating budget) and outside donors (for the remaining 75%). The World Health Organization’s current priorities include communicable diseases; mitigation of the effects of non-communicable diseases; sexual and reproductive health, development, and ageing; nutrition, food security and healthy eating; occupational health; and substance abuse. It is responsible for the World Health Report, the worldwide World Health Survey, World Health Day and numerous health-related reports, resources and campaigns.

Much of the work of the World Health Organization involves collaboration with external bodies that are recognised as NGOs. There are six regional offices of the World Health Organization: Africa (AFRO), Europe (EURO), South-East Asia (SEARO), Eastern Mediterranean (EMRO), Western Pacific (WPRO) and the Americas (PAHO). Each Regional Committee consists of all the health department heads in all the governments of the countries that constitute the region. The World Health Organization enters into formal relations with NGOs. Two communication-related NGOs with this status are:

• The International Association of Logopedics and Phoniatrics (IALP), recognised as an NGO by World Health Organization in 1969. It has the opportunity to attend meetings and contribute to policy that relates to communication, hearing and rehabilitation topics. The IALP and ICP recognise their common purpose, and have agreed to work closely together to advance the cause of those with communication disability. ICP members have provided material to support IALP’s participation in WHO meetings and initiatives.

• The American Speech-Language-Hearing Association (ASHA), recognised as an NGO by the Pan American Health Organisation (PAHO) in 2013. Since 2014, ASHA has worked with or committed to working with seven countries in the PAHO Region (Belize, Cuba, Ecuador, El Salvador, Guyana, Honduras and Paraguay) to help them realise goals they have set related to speech-language-hearing infrastructure. As an NGO, ASHA regularly attends World Health Organization – Disability and Rehabilitation (WHO-DAR) meetings and other select World Health Organization policy meetings.

Generally, there has been an absence of specific inclusion or recognition of communication disability in World Health Organization policy. Developments relevant to speech-language-hearing and swallowing include the following initiatives.

The International Classification of Functioning, Disability and Health (ICF, World Health Organization, 2001) provides a framework within which the ICP may advocate for consideration of communication needs. It is comprised of the components Body Functions and Structures, Activities and Participation, Environmental Factors and Personal Factors. Body Functions and Structures includes chapters on hearing (Sensory Functions and Pain) and the ear (Eye, Ear and Related Structures). Other communication functions are addressed in the function and structure chapters on voice and speech (Voice and Speech Functions; Structures Involved in Voice and Speech), and cognition and language (Mental Functions and Structures of the Nervous System). Activities and Participation address the capacity and performance of individuals in their current environment, which includes domains such as learning, communication, self-care activities, interpersonal relationships, and community life. Environmental Factors and Personal Factors encompass the range of services (including speech-language pathology services) available as well as physical, social and personal factors. The ICF has been widely adopted by speech-language pathologists and audiologists and is considered to delineate the role of those professionals in the prevention, assessment, and habilitation/rehabilitation of communication and related disorders, and to frame research relevant to those functions. The ICP recognises the value of this framework in the development of advocacy initiatives.

The World Report on Disability (World Health Organization and World Bank, 2011) acknowledges the importance of communication, rehabilitation and accessibility. In terms of communication, it notes that the communication needs of people with disabilities may be unmet. The report advocates creation of communication accessible environments as a means of enabling participation of people with disabilities. The ICP will seek to provide input to revisions of this report.

Developmental Difficulties in Early Childhood (World Health Organization, 2012) highlighted speech and language as the most common developmental difficulty in children, and stated that any large-scale solution to prevention, identification, assessment and intervention in low- and middle-income countries must include a drive to address speech and language developmental difficulties. The ICP will seek to provide input to revisions of this report.

Global Disability Action Plan (2014–2021) (World Health Organization, 2015) was developed by the WHO–DAR team. It focuses on disability related to long-term physical, mental, intellectual, and sensory impairments, however limited communication-related information is included. An October 2015 meeting of collaborating centres, professional bodies and organisations in official relations with the WHO–DAR team discussed the need to include communication and cognitive disabilities in the Plan more explicitly as member countries develop strategies and partners collaborate. Subsequent WHO–DAR meetings in May 2016 and February 2017 addressed the goals of including rehabilitation in universal health coverage in as many countries as possible, highlighting the role of rehabilitation in achieving the Sustainable Development Goals, and calling for coordinated and concerted global action toward strengthening rehabilitation in health systems. A meeting of the Rehabilitation Services Expert Group was held in Geneva in June 2017 to develop a first draft of a World Health Organization Framework of Rehabilitation Services. As recognised NGOs, IALP and ASHA are represented at WHO–DAR meetings, providing a means for ICP contribution.

Prevention of Deafness and Hearing Loss Program (World Health Organization, 2017) envisages a world in which no person experiences hearing loss due to preventable causes, and those with hearing loss can realise their full potential through rehabilitation, education and empowerment. It aims to achieve this through implementation of community-based, sustainable and inclusive strategies for prevention and management of hearing loss, integrated within primary health care systems. The program undertakes evidence-based advocacy to raise awareness of ear and hearing care among member states. The World Health Organization provides technical assistance for the development, implementation and monitoring of hearing care strategies. In these efforts, it relies heavily on its partnership with stakeholders involved in ear and hearing care service delivery, research and advocacy. World Hearing Day is a key awareness raising initiative. First designated in 2007, this World Health Organization global observance occurs annually on March 3rd to raise awareness and promote ear and hearing care worldwide.

World Bank

The World Bank has participated in the evolution of the disability conversation, as a member of the Interagency Support Group on the Convention for the Rights of People with Disabilities and a contributor to the Conference of States Parties to the Convention. It collaborated with World Health Organization on the World Report on Disability (World Health Organization and World Bank, 2011). To date, the ICP has not partnered with the World Bank. Exploring a potential strategic alliance will be considered in the future.

Conclusions

The rights agenda, through the Universal Declaration of Human Rights (United Nations, 1948), and other conventions such as the Convention on the Rights of Persons with Disabilities (United Nations, 2006), and the Convention on the Rights of the Child (United Nations, 1989), provides the platform through which the basic human right to communicate effectively can be championed. Article 19 of the Universal Declaration of Human Rights includes the right to “…freedom of opinion and expression, … and to seek, receive and impart information and ideas…” However, as members of the speech-language pathology and audiology professions, we are critically aware of the limitations and barriers for those with communication disabilities, restricting their ability to exercise and enjoy their basic rights.

Communication skills underpin the key indicators of successful involvement in modern day society, including positive social relationships, literacy and numeracy, educational attainment, employment, and civic participation. Not only is communication a human right, it is the essence of what makes us human. The rights of people with communication disability should be explicitly acknowledged within major public policy and strategy documents, across health, disability, aged care, education and early childhood, and justice sectors. Policies should acknowledge and seek to redress issues relating to availability and accessibility of services and supports for people with communication disability.

The 70th anniversary of the Universal Declaration of Human Rights is a time to celebrate how far we have come in accepting and protecting people’s human rights. However, strengthening global awareness and recognition of the need to advance the right to communicate effectively is paramount in order to achieve entitlements to dignity and equity, and for full and successful participation in society for those with communication disorders. Communication is a human right for all.

Declaration of interest

No potential conflict of interest was reported by the authors.

Acknowledgements

The authors acknowledge the contribution of members of the International Communication Project Strategic Advisory Committee