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:

1. Lack of sufficient accessibility measures and reasonable accommodations, such as communication supports, including access to affordable interpreter-guide/Deafblind interpreting services, assistive devices and technologies, information in accessible formats, etc.

2. The misperception that persons with deafblindness cannot participate or that it is too difficult to include them.

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.

^[iii] 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. 9.

^[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.