Social participation for people with communication disability in coffee shops and restaurants is a human right

Abstract

Although Article 19 of the Universal Declaration of Human Rights states that “everyone has a right to freedom of opinion and expression”, for people with communication disability this may not be a reality. This commentary shares a practical example of how people with communication disabilities together with speech–language pathology (SLP) students, academics and clinical staff co-designed and co-implemented a Communication Awareness Training Programme for catering staff to enable communication access in coffee shops and restaurants. This is an example of how SLPs can embrace their social responsibility to break down barriers for people with communication disabilities. This commentary shares the reflections of those involved and how they felt empowered because they had learned new skills and made a difference. This commentary highlights the need for co-design and co-delivery of programs to raise awareness of communication disability among catering staff and how the stories of people with communication disabilities served as a catalyst for change. It also highlights the need to SLPs to move intervention to a social and community space.

Keywords:

• Article 19
• Universal Declaration of Human Rights
• United Nations
• participation
• adults with communication disability

Introduction

Article 19 of the Universal Declaration of Human Rights (United Nations, 1948) states that “everyone has a right to freedom of opinion and expression”. For people with communication disability this may not be a reality. Threats and Worrall (2004) describe communication as a tool that is used for a range of functions in our daily lives such as going shopping, participating in religious services and engaging in relationships. Communication impairment occurs when there is a limitation in the ability to receive, send, process and understand verbal, nonverbal and graphic symbol systems (American Speech-Language-Hearing Association, 1993). A person with a communication impairment may experience communication disability as a result of both the impairment and social and environmental barriers that limit opportunities to participate in society on an equal level with others (e.g. ordering a cappuccino in a coffee shop). Environmental factors are a key component of the International Classification of Functioning Disability and Health framework (ICF) (World Health Organization, 2001) and involve the physical world and its features such as other people, attitudes, values, social systems and services. Some of the social and environmental barriers which people with communication disability encounter may result from lack of awareness of communication disability and negative attitudes. For example, people with intellectual disability may have negative experiences with regard to community participation in restaurants and shops because of lack of staff awareness and an inability of staff to communicate effectively (Verdonschot, De Witte, Reichrath, Buntinx, & Curfs, 2009). Much of the literature examining public awareness of adult communication disability focuses specifically on aphasia (Flynn, Cumberland, & Marshall, 2009; McCann, Tunnicliffe, & Anderson, 2013). Lack of awareness and understanding has been identified as a core barrier to social participation in adults with aphasia (Hammel, Jones, Gossett, & Morgan, 2006). People who stutter also experience negative attitudes that may impact on social participation (Gabel, 2006). There is evidence to suggest a lack of awareness of communication disability among the general public (Borthwick, 2012) and hospitality students (Guinan & Carroll, 2016) which may result in a person with communication disability experiencing feelings of isolation and exclusion.

These barriers impact the realisation of Article 2 of the Universal Declaration of Human Rights (United Nations, 1948) stating that “everyone is entitled to all the rights and freedom set out in the declaration without distinction of any kind, such as race, colour, sex, language…”. Ireland is a signatory to the Convention on the Rights of Persons with Disabilities (United Nations, 2006) in which Article 9 stresses the fundamental issue of accessibility. Article 9 requires countries to eliminate barriers and obstacles and make access to services a reality for people with disabilities. Article 21 stresses that the person with a disability has the right to freedom of expression. Recommendation seven of the World Report on Disability is to increase public awareness of disability (World Health Organization (WHO) and The World Bank, 2011). WHO and The World Bank (2011) also stress that lack of accessible communication affects the lives of people with disabilities. These high level aspirations are consistent with a vision for an inclusive society (Solarsh & Johnson, 2017). When we adopt a social model of disability perspective, interventions are required at an environmental and societal level to enable universal communication access. Bunning and Horton (2007) highlight that people with different diagnoses may have similar inclusion needs. Furthermore, the Convention on the Rights of Persons with Disabilities promotes “‘universal design” whereby products and environments can be used by all people. This notion of “universal design” is supported by Lawson (2017) who claims that accessibility for people with disabilities is the concern of any establishment providing services to the public. There have been a number of initiatives to promote awareness and access for all people with communication disability. For example, Solarsh and Johnson (2017) highlight the use of the Communication Access Symbol promoted by Scope in Victoria, Australia, as a method to promote awareness and change attitudes to limit social exclusion for people with communication support needs. This symbol is awarded following training, assessment and review in meeting the minimum standards required for communication access. Other communication access initiatives have been developed in the United Kingdom such as the work of Connect (Connect, 2012). Howe, Worrall, and Hickson (2004) and Collier, Blackstone and Taylor (2012) also promote the creation of communication-friendly environments to remove barriers and facilitate participation.

Communication access: An example from Ireland

In an attempt to make Article 19 of the Universal Declaration of Human Rights and Article 9 of the Convention on the Rights of Persons with Disabilities (United Nations, 2006) a reality, an initiative commenced in the West of Ireland in early 2015. This project was funded by the National University of Ireland Galway Explore Initiative, which supports student and staff collaboration and innovation. A group of student SLPs, adults with a range of communication disabilities (both developmental and acquired, for example, development language disorder, stuttering, aphasia, intellectual disability), a carer, SLPs in the community and SLP academics came together to address barriers to participation for people with communication disabilities and to create communication-friendly environments in coffee shops and restaurants. The group co-designed and co-piloted a Communication Awareness Programme which had two broad aims. The first aim was to educate catering staff about communication disabilities and to facilitate them to understand the experiences of ordering food and drinks, both positive and negative, from the perspectives of people with a broad range of communication disabilities. The second aim was to equip catering staff with strategies and tools to create a communication-friendly environment. Each training session was two and half hours long, delivered by two SLP students and four/five co-trainers with communication disability. The content of the program included brainstorms, videos with permission from Connect UK, listening to the personal stories of ordering in restaurants and coffee shops from people with communication disabilities and their carers, and interactive activities. Each business devised an action plan considering environmental modifications that would facilitate communication access (e.g. visual menus).

The group explored the experiences of those involved in the pilot project. With ethical approval from National University of Ireland Galway, an independent person interviewed nine people which included: SLP students, catering staff, people with communication disability, a carer and SLPs. It is beyond the scope of this pilot paper to describe the study in detail but some of the key findings are outlined. The adults with communication disabilities described negative experiences in some coffee shops and restaurants. For example, some found it difficult to read menus and the person who was accompanying them was often asked for the order. They also reported that restaurants and coffee shops were often noisy and busy with queues and they felt rushed, which negatively impacted on their ability to order food and drinks independently. One of the adults with communication disability explained that “I tend to be quieter. People that I am with tend to do the ordering for me rather than leaving it to me. It’s very embarrassing and frustrating. I tend to be quieter and people take over to save the embarrassment… And then I suppose people lose their confidence because they don’t get the chance to do it”. Catering staff shared the reality of their experiences. One of the catering managers who attended the training reported that “I am in management and they (staff) would come to me all panicked about how to approach somebody”. One of the catering staff noted that she “didn’t understand the customer’s need when he was having trouble paying at the till”. Another employee in the catering industry reported that she “never really thought there was anything we could do as staff to improve their experience in the café until we got invited to take part in the program”. The open, safe, collaborative ethos of the training session was helpful for the catering staff as “we asked people with communication impairments questions and they asked us questions. There was constructive criticism as they helped us make the changes”. The catering staff were surprised that small changes could make such a big difference (e.g. visual aids). One of the catering staff reported that “before I would have thought that I was insulting someone if I gave them aids but now I have the confidence to take the time and not rush the person or finish their sentences”. The catering staff realised that they have a role in supporting the participation of the people with communication disabilities in society by giving the person more time and providing visual support along with verbal information.

When the group reflected on the implementation of the training, key factors were identified as important ingredients for success: hearing personal stories, making a deliberate effort to make changes, the importance of learning practical strategies, video demonstrations, follow-up visits where catering staff could try out their new strategies and receive feedback directly from people with communication disability and active participation of catering managers. The importance of listening to the stories of people with communication disabilities was a key catalyst for change for catering staff “they helped us understand how we can make the service-industry better … as their money is as valuable as anyone else”. Furthermore, the people with communication disability felt empowered when they told their stories and could see that they could bring about change. One of people who participated in the communication awareness training was delighted when he returned to a restaurant and found that they were using visual supports which enabled him to order- “they (catering staff) had a sheet for the sandwiches…and also things that weren’t there before”. The positive outcome of the training was emotional for one of the carers who found out that her son, who presented with a severe communication disability, was able to order for himself – “it would make you so emotional because this is what it is all about…it was just overwhelming for me and such an achievement for him”. One of the catering staff was also struck by this story “his mother was so shocked that he had the ability to order for himself…it (the training) is one of the best things I have done in my career”. Our experiences resonate with those of Mc Menamin, Tierney, and Mac Farlane (2015) who found that when adults with aphasia participated in the design and delivery of a conversation partner program, it was an empowering experience and provided them with opportunities for conversations with unfamiliar people and they were acknowledged for their expertise.

Developments

Following this pilot, the Communication Awareness Programme was selected to represent National University of Ireland Galway at a national Enactus competition (more details see Loughnane et al., 2015). Enactus supports social entrepreneurial projects which have a community impact and supports student, academic and business leaders to transform lives. With the support of Enactus, the Communication Awareness Programme evolved and was rebranded in 2017 to Hear Me! Communication Awareness Training. The training is now one and a half hours which facilitates catering staff to attend. Professional videos of people with communication disability have now been produced to illustrate positive and negative experiences of ordering in a restaurant. Certification has also been added to the package whereby there is a visit to the catering establishment by one of the co-trainers, a person with a communication disability and a SLP student. The co-trainer makes an order, rates the experience and decides whether or not the establishment can be recognised as a communication-friendly business and receive a window sticker with the Hear Me! logo. However, it is important to note that further work is required to develop a standardised process similar to Solarsh and Johnson (2017). The carer of an adult with a communication disability reported that “Having the sticker in place allows them (people with communication disabilities) to know that this is a communication friendly environment. They know that the program is in place and that they have some training and people with communication impairments can go in and feel more relaxed”. To date 91 catering staff attended the training from two University Hospitals and from restaurants and coffee shops in the West of Ireland. Ten co-trainers with communication disabilities are involved in the training and one person reported that “we offered the experience of our lives to the project”.

Social responsibility and SLP

Hear Me! is one practical example demonstrating the influential role SLPs play in making rights and access a reality. Hear Me! demonstrates how SLPs can work in a social and community space and support businesses to consider the needs of all customers. It demonstrates how recommendation seven of the World Report on Disability (World Health Organization and The World Bank, 2011) can become a reality as well as supporting Article 19 of the Universal Declaration of Human Rights (United Nations, 1948) and the Convention on the Rights of Persons with Disabilities (United Nations, 2006). A key feature in the design was the inclusion of people with communication disabilities as co-designers and co-trainers and an opportunity to share their real-life stories. Hear Me! supports collaborative practice and supports the social model of disability in SLP (Byng & Duchan, 2010). Through this project, SLPs demonstrated their role in social entrepreneurship through the design of a small-scale collaborative intervention to promote communication access that could have a wider applicability across the catering sector. Through involvement in this program pre-registration SLPs were provided with opportunities to develop team-work skills, presentation and facilitation skills and implement a social model approach. One SLP in training reported that “I thought that delivering therapy was in a clinic room on a one-to-one whereas now I have a more holistic view and more of a social model than an impairment model. For a client becoming more involved and being included in society might be more important for them”. This initiative supports the work undertaken by colleagues where SLP students are involved in a conversation training program at National University of Ireland Galway (Mc Menamin et al., 2015). A key outcome of the training program was the realisation that little changes could make a big difference. Our experience resonates with that of Parr (2007) who indicated that education and training of hospitality staff may help lessen some of the barriers faced by people with communication disability. The work of Solarsh and Johnson (2017) challenges us to consider communication access standards that businesses must meet in order to be eligible for a communication access licence, thus formalising the process and striving for consistent standards.

Declaration of interest

There are no real or potential conflicts of interest related to the manuscript.

Acknowledgements

We would like to thank everyone who was involved in particular Saolta Group, CROI, Voices for Galway, Brothers of Charity, Aramark, NUI Galway Explore, NUI Galway Enactus, Enactus Ireland and catering businesses.

Additional information

Funding

The project received funding from National University of Ireland, Galway Explore Initiative and Enactus Ireland.