Participation of persons with disabilities is a cross-cutting precondition to ensure the enjoyment of all their rights as well as being a standalone right[i] and is covered in more detail in the chapter on Participation in Public and Political Life. The active and informed participation of persons with deafblindness upholds the disability movement’s motto ‘nothing about us without us’ and replaces the common practice of decisions being made on behalf of persons with deafblindness, ensuring good governance and a human rights-based approach[ii].
The lack of participation of persons with deafblindness stems from dual barriers:
These two barriers compound one another because the misperceptions about the capabilities of persons with deafblindness often lead to a lack of reasonable accommodation and accessibility measures to improve communication supports. Yet, the communication supports are needed to demonstrate the capabilities of persons with deafblindness[iii]. In low-income countries, persons with deafblindness may also experience economic barriers to participation because they are facing poverty and are preoccupied with coming up with ways to generate income.
Moreover, OPDs of persons with deafblindness often do not have the capacity to monitor opportunities to contribute to legislative and policy processes because they do not have access to affordable communication support, often due to a lack of affordable interpreter-guide/Deafblind interpreting services. For example, the literature review revealed that even where persons with deafblindness are mentioned in global reports (e.g., reports from the UN Special Rapporteur on the rights of persons with disabilities or OPD shadow reports to the CRPD Committee), they lack the specificity in comparison with other groups of persons with disabilities, including other underrepresented groups of persons with disabilities, or may be excluded entirely. This leads to underrepresentation of persons with deafblindness in essential standard-setting tools, such as General Comments and Concluding Observations of the CRPD Committee.
Where persons with deafblindness are explicitly mentioned in reports or decisions, they are often not consulted. For example, the National Human Rights Commission in Mexico recently demanded the invalidity of various provisions of the General Education Law, including provisions on inclusive education that explicitly referred to persons with deafblindness, because persons with deafblindness were not consulted on the legislation. The Supreme Court of Justice of the Nation determined that by directly affecting the rights of persons with disabilities, there was an obligation to consult these groups prior to the issuance of the law, in accordance with the General Constitution[iv]. This example demonstrates that by overlooking the participation of persons with deafblindness, regardless of the reason, these processes will likely need to be revisited to understand the express requirements, as set out directly by persons with deafblindness. It is, therefore, more cost-effective and time-efficient to include persons with deafblindness from the outset, even if it requires additional time and/or money.
[i] Convention on the Rights of Persons with Disabilities, A/RES/61/106, 13 December 2006, preamble and Articles 1, 3, 4, 7, 9, 19, 21, 24, 26, 29, and 32-35.
[ii] Committee on the Rights of Persons with Disabilities, General Comment No. 7 on the participation of persons with disabilities through their representative organisations, CRPD/C/GC/7, 9 November 2018, para. 2.
[iv] Supreme Court of the Justice of the Nation, The SCJN Invalidates Several Articles of the General Education Law Due to Lack of Prior Consultation, press release on No. 189/2021, Mexico City, 29 June 2021, https://www.internet2.scjn.gob.mx/red2/comunicados/noticia.asp?id=6497, accessed May 2022.
Participation should be active, free, and meaningful, ensuring a systematic and timely approach. There must be a guarantee of reasonable accommodations to consultative processes, consultative processes must be free from stigma, and everyone’s legal capacity should be recognised[i]. To ensure equitable access to information and equitable opportunities for the participation of persons with deafblindness, proactive steps must be taken. Through their representative organisations, persons with deafblindness should be:
Interpreter-guide/Deafblind interpreting services should be paid for by the organisers and not by the person with deafblindness since this is a necessary adjustment to ensure their participation[iii], and costs should include the professional fees for interpreter-guides/Deafblind interpreters as well as reasonable travel expenses, if applicable. In addition, organisers of participatory processes could benefit from increased awareness of deafblindness (i.e., what it is and how people are affected by it) as well as participation tools, such as deafblind communication guides or manuals, which are often developed by OPDs of persons with deafblindness[iv].
Proxies, or substitute representatives without deafblindness, should not be used in place of persons with deafblindness without their express consent and should only be considered after exploring all avenues for direct participation. This is because others who speak on behalf of persons with deafblindness often miss essential elements or details and do not have the lived experience of deafblindness. Where proxies are used, persons with deafblindness should be supported to review the final versions or decisions to ensure that it truly reflects their views. Proxies should also only be viewed as a one-off arrangement unless OPDs of persons with deafblindness instruct otherwise.
An essential way to ensure the participation of persons with deafblindness in low-income countries is to urgently address the extreme poverty of persons with deafblindness so that they can focus their attention on the participatory process.
[i] UNPRPD, The preconditions necessary to ensure disability inclusion across policies, services, and other interventions, https://unprpd.org/sites/default/files/library/2020-08/Annex%202%20UNPRPD%204th%20Funding%20Call%20Preconditions%20to%20disability%20inclusion%20ACC.pdf, accessed May 2022, p. 5.
[ii] Deafblind Scotland, An Inclusive Communication Guide for Engaging with Deafblind People, https://dbscotland.org.uk/wp-content/uploads/2021/03/Inclusive-Communication-Guide-for-Engaging-with-Deafblind-People-accessible-final.pdf, accessed May 2022; and Jaiswal, Atul. Deafblind Ontario Services, Stakeholder Consultation Project, August 2019, p. 28.
[iii] Jaiswal, Atul. Deafblind Ontario Services, Stakeholder Consultation Project, August 2019, p. 28.
[iv] See for example, Deafblind Scotland, An Inclusive Communication Guide for Engaging with Deafblind People, https://D bscotland.org.uk/wp-content/uploads/2021/03/Inclusive-Communication-Guide-for-Engaging-with-Deafblind-People-accessible-final.pdf.
OPDs and NGOs
Donors and Research Institutes