Recreation and participation in social life

Social life is an integral part of the human experience and essential to well-being and the capacity to thrive. The rights directly affecting the social life of persons with deafblindness include:

Accessibility
Living independently and being included in the community
Personal mobility
Freedom of expression and opinion, and access to information
Respect for home and the family
Participation in cultural life, recreation, leisure, and sport^[i].

Notably, persons with deafblindness have the right to marriage, family, parenthood, and relationships on an equal basis with others^[ii]. They also have the right to take part on an equal basis with others in cultural life, recreation, leisure, and sport. For children with deafblindness, this includes the right to play^[iii].

Social isolation among persons with deafblindness at all ages is a common challenge. Communication barriers reduce or alter interactions with people and impact social networks, including the support network of persons with deafblindness. Difficulties in being understood lead to fatigue, frustration, and stress in social situations^[iv]. Barriers to accessing information, developing independent living skills, mobility issues, and caregiver dependency combined with the communication barriers obstruct social contact and reduce participation in social activities^[v]. Therefore, persons with deafblindness are more likely to experience decreased participation in everyday activities, which can lead to stigma about the social capabilities of persons with deafblindness, low self-esteem, lack of support, and a lower quality of life^[vi].

Particularly, family life for persons with deafblindness and their families can be drastically affected by the stresses and strains of caring responsibilities, stigma, and general lack of support. Caregivers can significantly empower or disempower persons with deafblindness in social settings^[vii]. In extreme cases, these stresses can result in violence, neglect, and abuse of persons with deafblindness by caregivers (e.g., some may be locked away or medicated to sleep all day). Caregivers can sometimes be overly protective and risk avoidant, preventing persons with deafblindness from participating socially^[viii]. Conversely, a highly supportive family can provide a safe, accepting space for persons with deafblindness that encourages learning, exploration, and personal growth.

However, persons with deafblindness should not rely exclusively on families for social interaction. People who acquire deafblindness may go from having social networks that focus on friends and family members to social networks largely comprised of professionals who support them and have reduced contact with family and friends^[ix]. Moreover, for those that acquire deafblindness, especially in older persons, it is often the social isolation that can be an indicator of the prevalence of acquired deafblindness. Persons with prelingual deafblindness may struggle to find people beyond family and professionals supporting them who can communicate with them, significantly limiting the scope of possible social interactions. This, in turn, can affect social development as well as the development of communication skills due to the low- exposure to diverse people.

According to WFDB survey respondents, the rules for using interpreter-guides/Deafblind interpreters often prioritises ‘essential’ activities, such as education, employment, health visits, etc., and may limit the available hours, requiring persons with deafblindness to prioritise the tasks they wish to complete that require assistance. Social interaction is often overlooked as an essential aspect for live assistance. For example, the Norwegian Association of the Deafblind (NADB) highlighted that persons with deafblindness over the age of 67 (i.e., the age of retirement) are not entitled to interpreter-guide/Deafblind interpreting services for social activities, implying that a social life is irrelevant to older persons with deafblindness. WFDB survey respondents noted that OPDs are often the only entity in countries providing support for social inclusion, but many are limited in what they can organise due to the costs.

^[i] Convention on the Rights of Persons with Disabilities, A/RES/61/106, 13 December 2006, Articles 9, 19, 20, 21, 22, and 30.

^[ii] Ibid., Article 22.

^[iii] Ibid., Article 30.

^[iv] World Federation of the Deafblind, At risk of exclusion from CRPD and SDG implementation: Inequality and Persons with Deafblindness, https://wfdb.eu/wfdb-report-2018/, September 2018, p. 40.

^[v] Ibid., p. 41; Choudhary, V., Connecting Youth and Adults with Acquired Deafblindness: An Action Research Study to Gain Insights into the Benefits of Age Diversity in Peer-Matching, 29 July 2020, p. 2.

^[vi] World Federation of the Deafblind, At risk of exclusion from CRPD and SDG implementation: Inequality and Persons with Deafblindness, https://wfdb.eu/wfdb-report-2018/, September 2018, p. 40-41.

^[vii] Prause, D. et al, Balancing on a knife-edge: Experiences of older patients with acquired DB when receiving existential care, provided by author, accessed October 2021.

^[viii] World Federation of the Deafblind, At risk of exclusion from CRPD and SDG implementation: Inequality and Persons with Deafblindness, https://wfdb.eu/wfdb-report-2018/, September 2018, p. 41.

^[ix] Goransson, Lena. Deafblindness in a Life Perspective: Strategies and Methods for Support, www.skane.se/dovblindteam, 2008, p. 57-58.

Good Practices

Recent experiences of the COVID-19 pandemic have brought to light the impact of social exclusion through the barriers of enforced restrictions on social interaction and the impact that this has on people’s lives. In a post-pandemic world, there are opportunities to increase awareness of the impacts of social isolation on persons with deafblindness, as well as opportunities for greater social empathy and understanding of the core human right to socially interact with others on a regular basis^[i].

Social networks and activities are essential for maintaining positive health in persons with deafblindness, especially in older persons, because it strengthens their support networks, and improves their quality of life, health outcomes, and mental health. Patience and sufficient time to allow for communication are important factors to ensure a smooth social experience. Some key elements and measures to enhance and improve social inclusion for persons with deafblindness include:

Access to interpreter-guide/Deafblind interpreting services for social interactions and recreational activities, recognising these as ‘essential’, as well as access to assistive devices and technologies to improve personal independence and mobility
CBR services that address barriers to social interaction as a priority for persons with deafblindness to identify and amend strategies in individual plans, including individualised education plans for children with deafblindness, that are updated over the individual’s course of life. This includes working with the social networks of persons with deafblindness, including families, on strategies for supporting social inclusion
Accessible information on social, cultural, and recreational activities and opportunities
Accessibility standards and guidance for public recreational venues and transportation operators to increase inclusion of persons with deafblindness in accessing recreational activities
Support to OPDs of persons with deafblindness to arrange and enhance social activities for persons with deafblindness. This may include the development of peer networks or mentoring programmes so that persons with deafblindness can share learning on social inclusion with other persons with deafblindness. This support should also include schemes to develop networks of support, such as mediators, coordinators, volunteers, companions, and others, who are sensitised on deafblind communication and can play a role in facilitating social interaction and recreational activities. Where possible, multi-party engagement should be encouraged to develop more advanced social interactions and to build peer relationships
Sensitisation training for caregivers on methods for increasing autonomy and positive social interactions for persons with deafblindness and to overcome stigma. This can be delivered by parents’ groups, OPDs, CBR services, schools, and other service providers, depending on the situation in the country
Information and guidance to support the participation of persons with deafblindness in social, recreational, and cultural activities. For example, the Danish Association of the Deafblind (FDDB) developed a hiking course and nature guide for families focusing on interpretation, visual descriptions, and techniques for hiking with a companion. These guides can be developed by museums, libraries, cinemas, theatres, sports venues, parks, and other sites^[ii].

Lastly, caregivers and organisations involved in the social activities of persons with deafblindness should be mindful of the authenticity of the social interaction. Persons with deafblindness need to have trust in the activities, including the motivations for the orchestrated social activity. While some planned group activities among persons with deafblindness are often welcomed, they should not be forced as a means of finding solutions to limited social interactions, as this can detract from the autonomy and the authentic qualities of social engagement^[iii].

^[i] Ebuenyi, I., et al. “COVID-19 as social disability: the opportunity of social empathy for empowerment”, BMJ Global Health, 2020, 5:e0003039. Doi: 10.1136/bmjgh-2020-003039.

^[ii] Ardura Rod, A. et al. Leisure Activities and Free Time: Planning and Development According to Levels, http://www.asocide.org/publicaciones/, accessed October 2021; Danish Association of the Deafblind (FDDB), Close to Nature: with new methods for hiking and sight description report, https://www.fddb.dk/tilbud-til-dig/pjecer-boeger-og-andre-udgivelser/boeger-og-rapporter/taet-paa-naturen-med-nye-metoder-til-vandring-og-synsbeskrivelse-rapport/, accessed October 2021; Liston, Lilias. “How to Become a Bridge, not a Barrier: Building Peer Relationships for a Young Man with Congenital Deafblindness Using Multiparty Interactions in the Tactile Modality”, DBI Review, Issue No. 65, April 2021, p. 20-24; Pertoff, Jerry. National Transition Follow-Up of Youth Identified as Deafblind: Parent Perspectives, https://www.govinfo.gov/content/pkg/ERIC-ED465234/pdf/ERIC-ED465234.pdf, August 2001; Prause, D. et al, Balancing on a knife-edge: Experiences of older patients with acquired DB when receiving existential care, provided by author, accessed October 2021; World Federation of the Deafblind, At risk of exclusion from CRPD and SDG implementation: Inequality and Persons with Deafblindness, https://wfdb.eu/wfdb-report-2018/, September 2018, p. 40-41–

^[iii] Choudhary, V., Connecting Youth and Adults with Acquired Deafblindness: An Action Research Study to Gain Insights into the Benefits of Age Diversity in Peer-Matching, 29 July 2020, p. 12.

Recommendations

Governments

Rescind legislation and policies that hinder the right to form a family for persons with deafblindness

Adopt measures to support families with persons with deafblindness (e.g., social protections, respite care, etc.) to alleviate stresses and strengthen families as part of the support network

Provide interpreter-guide/Deafblind interpreting services for social, recreational, and cultural activities for persons with deafblindness to prevent isolation and exclusion and provide access to assistive devices and technologies to enable independence

Establish accessibility guidance tools (e.g., on accessible communications) for public recreational, cultural, and sporting activities

Ensure CBR, education, mental health, and other essential services facilitate social inclusion and social development for persons with deafblindness throughout their life cycle

Support civil society programmes to advance the social engagement of persons with deafblindness in line with the CRPD (e.g., through funding NGOs, OPDs, and others) to organise activities, peer networks, mentoring and volunteer programmes, etc.

OPDs and NGOs

Develop partnerships with OPDs of persons with deafblindness and parents’ groups to establish interventions to increase social interactions and to combat isolation of persons with deafblindness

Arrange and enhance authentic social activities for persons with deafblindness (e.g., peer networks, mentoring programmes, and schemes for mediators, coordinators, volunteers, companions, and others) who are sensitised on deafblind communication and who play a role in facilitating social interaction and recreational activities

Deliver sensitisation training for families and caregivers on methods for increasing autonomy and positive social interactions for persons with deafblindness and to overcome stigma

Work with social, recreational, sports, and cultural institutions to develop information and guidance on how to support the participation of persons with deafblindness in activities and reach out to the deafblind community to advertise inclusive venues and activities

Donors and Research Institutes

Conduct research on the social isolation of persons with deafblindness and the community-based interventions that effectively tackle loneliness and isolation of persons with deafblindness

Provide grants to community-based groups and social enterprises, especially those led by persons with deafblindness, to develop interventions to increase social interaction and access to recreational activities of persons with deafblindness, recognising the central importance of social interaction on wellbeing.

Are you interested in reading our newly published Report on Older People with Deafblindness? Click here.