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:
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.
[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.
[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.
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:
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.
OPDs and NGOs
Donors and Research Institutes