Participation is a principle of the CRPD as well as a standalone right. This is because persons with disabilities, especially persons with deafblindness who experience communication barriers, are often excluded from making decisions that affect them. Persons with deafblindness have a right to participate in political and public life on an equal basis with others directly or through freely chosen representatives. This right includes the right to vote, the right to stand for election, and the right to participate in public affairs through participation in NGOs and associations, including through their own representative organisations[i]. In addition, OPDs should be involved in and participate fully in national CRPD monitoring processes[ii]. Representation of persons with deafblindness should reflect their diversity of gender, age, communication preferences, ethnicity, and other aspects, and they should be represented at local, national, and international levels. The right to participate is a civil and political right and is, therefore, immediately applicable, and not subject to budgetary restriction[iii].
Voting systems, administrative procedures, and information on the practicalities of voting and candidate information are often inaccessible to persons with deafblindness. This can lead to family members believing that they are incapable of voting[iv]. According to WFDB survey respondents, many rely on a ‘trusted person’ or family member to support them in voting. However, there is rarely a way to check whether the ‘trusted person’ has genuinely voted according to the person’s wishes. On the other hand, many countries do not provide any reasonable accommodations to support voting, such as allowing or providing live assistance, and where it is permitted, some persons with deafblindness do not trust family members to vote according to their wishes[v].
Persons with deafblindness are rarely represented in politics, whether elected or appointed. Stigma plays a major role, but lack of access to accessible information, assistive devices, and reasonable accommodations, such as affordable interpreter-guides/Deafblind interpreters, as well as social isolation all, contribute to their exclusion[vi].
One of the most effective ways for persons with deafblindness to participate in public life is through OPDs. WFDB has 75 national and associate members from 62 countries around the world (i.e., national OPDs of persons with deafblindness). However, these representative organisations often face barriers in maintaining registration through complex, expensive national processes, leading to inconsistent activity and barriers to funding. National disability movements also often fail to recognise OPDs of persons with deafblindness or to take steps to ensure their participation, leaving them on the fringes of national, regional, and international disability movements[vii].
The literature review included a review of shadow report submissions to the CRPD Committee State reporting process and revealed that very few shadow reports mentioned persons with deafblindness, demonstrating a significant gap in their participation of CRPD monitoring processes at the national level. The reasons for their exclusion are not entirely clear; however, communication barriers and lack of interpreter-guides/Deafblind interpreters, stigma about the capabilities of persons with deafblindness, and inconsistent functioning of OPDs of persons with deafblindness may all be contributing factors.
WFDB survey respondents noted that many OPDs of persons with deafblindness face barriers to funding, technical support, access to information, and interpreter-guides/Deafblind interpreters, which all facilitate their participation. For example, if an OPD for persons with deafblindness cannot track policy developments and opportunities to participate in consultation processes because they do not have access to interpreter-guide/Deafblind interpreting services, then the organisation will miss opportunities to influence decision-making.
[i] Convention on the Rights of Persons with Disabilities, A/RES/61/106, 13 December 2006, Article 29.
[ii] Ibid., Article 33.c.
[iii] Committee on the Rights of Persons with Disabilities, General Comment No. 7 on the participation of persons with disabilities, including children with disabilities, through their representative organisations, in the implementation of the Convention, CRPD/C/GC/7, 9 November 2018, para. 28.
[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. 36.
[vi] Ibid., p. 36-38.
If deafblindness is recognised as a distinct disability, then voting systems are more likely to be required to adopt accessibility measures and make reasonable accommodations for voters with deafblindness.
Some good practices to ensure persons with deafblindness can vote on an equal basis with others include:
To enable persons with deafblindness to serve as elected or appointed representatives on an equal basis with others, government at all levels must adopt policies and procedures to support reasonable accommodations, such as access to interpreter-guides/Deafblind interpreters and accessible technologies, regardless of whether these roles are paid or voluntary.
Appointing a representative from an OPD of persons with deafblindness to serve on a local or national development committee or similar body is a good starting point and provides practical experience for persons with deafblindness in public policy making[ii]. Similarly, national umbrella OPDs should increase the involvement of persons with deafblindness in the leadership of the national disability movement and provide reasonable accommodations to facilitate their active participation. Steps should be taken to ensure the diversity of persons with deafblindness in a representational capacity. In addition, political parties should reach out to OPDs of persons with disabilities to learn how to mainstream their processes so that they can be more inclusive.
Participation of persons with deafblindness in OPDs is a good vehicle for facilitating their political participation. It is not uncommon for persons with deafblindness to join OPDs of the deaf or blind, especially if they had single sensory impairments and have acquired the dual sensory impairment. If there is not an OPD of persons with deafblindness in the country, then umbrella OPDs or OPDs of the deaf and/or blind may have members who are deafblind. Moreover, other OPDs (e.g., of the deaf or blind) are ideally placed to provide financial, technical, or logistical supports for OPDs of persons with deafblindness that require it. OPDs of the deaf or blind should not, however, be used as proxies for OPDs of persons with deafblindness.
Because OPDs of persons with deafblindness face significant communication barriers, they often struggle to maintain consistent operations. However, they are the authoritative voice of persons with deafblindness. OPDs of persons with deafblindness can be supported in the following ways to strengthen their participation in decisions that affect them:
[i] SZBLIND, Voting secrecy – a right for everyone, https://www.szblind.ch/fileadmin/pdfs/Medien/PMT_Abstimmungsschablonen.pdf, 15 September 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. 36-38.
[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. 37.
[iii] Committee on the Rights of Persons with Disabilities, General Comment No. 7 on the participation of persons with disabilities, including children with disabilities, through their representative organisations, in the implementation of the Convention, CRPD/C/GC/7, 9 November 2018; 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. 36-38.
OPDs and NGOs
Donors and Research Institutes