Persons with deafblindness have a right to access a range of in-home, residential, and other communication supports, including live assistance to support independence, autonomy, and inclusion in the community and to prevent isolation or segregation[i]. Most often, this requires access to interpreter-guides/Deafblind interpreters. However, some persons with deafblindness may use personal assistants for more basic mobility support, and children with deafblindness may require teaching assistants in schools.
Interpreter-guides/Deafblind interpreters are uniquely trained and qualified professionals that are responsive to the compounded support requirements of persons with deafblindness, including communication, interpretation, access to information, description, orientation, guiding, and mobility support adapted to the person[ii]. Crucially, they are trained on the appropriate communication methods that are used by persons with deafblindness. Interpreter-guides/Deafblind interpreters are an essential support that enable persons with deafblindness to work, go to school or advance their education, attend medical appointments, access other services, exercise, socialise with family and friends, run errands, shop, respond to correspondence, and enjoy cultural events and recreation.
According to the WFDB survey, many countries, especially low- and middle-income countries, do not have a system for interpreter-guides/Deafblind interpreters, forcing persons with deafblindness to rely on family members. While families form a significant role in the support networks of persons with deafblindness, it is unsustainable to rely exclusively on friends and families to provide this service. This is because families are not always available and rarely trained to provide the service, which means that persons with deafblindness are dependent on the availability of family members who have sufficient knowledge of deafblind communication. Family members may also interfere with the task, affecting the independence or autonomy of the person with deafblindness. For example, relying on a family member to interpret during a medical visit may compromise privacy, or the family member may try to intervene as a proxy decision-maker on health decisions.
Persons with deafblindness use a variety of methods of communication, depending on their residual hearing or vision. There is not one way for all persons with deafblindness to communicate. Some persons with deafblindness may effectively be able to use the live assistance supports available to the deaf (e.g., captioning services or sign language interpreters) or the blind (e.g., personal assistance). However, it is a common misperception that services for the deaf or services for the blind will be sufficient for persons with deafblindness. More commonly, persons with deafblindness have no other option than to use services for the deaf or blind because there are no services available for persons with deafblindness. Services for the blind or deaf are usually not fit for purpose for persons with deafblindness and may place a burden on these services for other groups[iii].
Where interpreter-guide/Deafblind interpreting services are provided, they are often expensive, restrictive, inconsistent, and have limited availability across the country, according to respondents in WFDB’s survey. For example, one respondent commented that their interpreter-guide/Deafblind interpreting service only allows for two hours to go to the bank, including travel time. These types of restrictions limit independence and make daily living very rigid. Similarly, requiring considerably advanced booking, such as 72 hours’ notice, is unrealistic in modern society and forces persons with deafblindness to not utilise services that are available but place too many restrictions. Where these services are not free, the cost, according to another respondent, is akin to paying the salary of another person, which is an impossible barrier for many persons with deafblindness.
WFDB members have reported that cuts to free or low-cost services are an increasing threat to existing services and often lead to a reduction in the number of hours interpreter-guides/Deafblind interpreters are available or a reduction in the number of interpreter-guides/Deafblind interpreters available within a service, stretching services. Persons with deafblindness are unable to absorb these cuts since interpreter-guide/Deafblind interpreting services are essential for work, school, and accessing other services. These cuts force persons with deafblindness to work less and not access essential services, resulting in increased dependency.
[i] Convention on the Rights of Persons with Disabilities, A/RES/61/106, 13 December 2006, Articles 4.h, 9.2.e, 9.2.f, 19.b, 20, 23.2, 28.2.a, and 29.a.iii.
[ii] 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. 5-6. Interpreters for persons with deafblindness may be referred to in many ways, including interpreter-guides, deafblind interpreters, communicator-guides, intervenors, and more. In this report, interpreter-guides/Deafblind interpreters refer to the form of live assistance unique to persons with deafblindness.
[iii] Ibid., p. 12.
The first step to ensuring quality interpreter-guide/Deafblind interpreting services is to recognise deafblindness and interpreter-guide/Deafblind interpreting services within a legislative and policy framework[i]. This also includes recognition of sign languages where they are still not recognised, as sign language is one element of deafblind communication and ensures standardisation. The legislative and policy framework should also set out or refer to minimum standards and budgetary measures for the service, including the number of hours that are available for free, which should be based on consultations with OPDs of persons with deafblindness. This should be based on consultations with persons with deafblindness and may depend on the national and local environment as well as individual requirements. The legal and policy framework should also specify how local provision of services will be carried out (e.g., through legislation and budgetary measures)[ii]. Interpreter-guides/Deafblind interpreters must also be seen as a reasonable accommodation for persons with deafblindness to work, attend education, access health, and other services, as well as for social interaction[iii].
The provision of free interpreter-guides/Deafblind interpreters is an essential service for persons with deafblindness, and therefore, the provision of interpreter-guide/Deafblind interpreting services is an immediate obligation of States to ensure the right to live independently and be included in the community[iv]. However, this right is also subject to progressive realisation, and States should strive to ensure a full interpreter-guide/Deafblind interpreting service for all persons with deafblindness over time[v]. Moreover, since it is an essential service, budgetary cuts should be seen as retrogressive[vi]. It can take several years to set up interpreter-guide/Deafblind interpreting services where there currently are no services, and informal mechanisms, such as voluntary services or interpreter-guides/Deafblind interpreters-in-training, may serve as an interim measure while services are being developed.
Guidelines and criteria to regulate the delivery of services should be developed in consultation with persons with deafblindness and their representative organisations and should include information on training, certification, and ethical codes of conduct[vii]. The purpose of interpreter-guide/Deafblind interpreting services should be to support autonomy, independent living, communication, mobility, and access to information, reflecting the capabilities and diverse needs of individuals, across different aspects of life[viii]. Interpreter-guide/Deafblind interpreting services should prioritise essential functions, such as work, education, health care, emergency services, etc., and recreation and social engagement should be considered essential to persons with deafblindness to ward against social isolation[ix]. It is, therefore, essential that persons with deafblindness have a say about what is essential when accessing services because access to interpreter-guides/Deafblind interpreters for many is the difference between communicating or not communicating, which is fundamental to all human beings.
The elements for interpreter-guide/Deafblind interpreting services should include:
Interpreter-guide/Deafblind interpreting services, assistive devices and technologies, and accessible technologies make up the portfolio of disability support services to overcome and eliminate social exclusion, and persons with deafblindness may use any combination of these services, depending on individual needs.
[i] Zevallos-Arevalo, Ricardo. Peru Promotes Training of Interpreter Guides for Persons with Deafblindness, Article prepared for DBI Ibero-Latin American Network, 3 August 2021.
[ii] Jaiswal, Atul. Deafblind Ontario Services, Stakeholder Consultation Project, August 2019, p. 6.
[iii] Australian Deafblind Council, Response to National Disability Insurance Scheme Eligibility and Reasonable and Necessary Support, 25 September 2012.
[iv] Convention on the Rights of Persons with Disabilities, A/RES/61/106, 13 December 2006, Article 19.
[v] International Covenant on Economic, Social, and Cultural Rights, resolution 2200A (XXI), 16 December 1966, Article 2.1.
[vi] Committee on Economic, Social, and Cultural Rights, General Comment No. 3: The nature of States parties’ obligations (art. 2, para. 1 of the Covenant), 14 December 1990, para. 9.
[vii] United Nations Special Rapporteur of the Human Rights Council on the Rights of Persons with Disabilities, report on disability inclusive policies, A/71/314, 9 August 2016, para. 49.
[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. 13; Dhale, Zamir. My life as a person with deafblindness, www.sedbindia.org, October 2021.
[ix] Gerencer, S., & Lusina, U. Performance of Personal Assistance in Persons with Deafblindness, July 2021.
[x] 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. 12; Intervenor Services, Coaching Resources for Behavioural Competencies: Intervenor Services Human Resource Strategy, 2017-2018; and Technical Competencies Training Resource Guide: Intervenor Services Human Resource Strategy, 1 February 2019; Zevallos-Arevalo, Ricardo. Peru Promotes Training of Interpreter Guides for Persons with Deafblindness, Article prepared for DBI Ibero-Latin American Network, 3 August 2021
Governments
OPDs and NGOs
Donors and Research Institutes