Participation in public and political life

Participation in Public and Political Life

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.

^[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.

^[v] Ibid.

^[vi] Ibid., p. 36-38.

^[vii] Ibid.

Good Practices

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:

Provide guidance on the requirements of persons with deafblindness in the voting process, including specific advice to election officials and training for electoral commission members and other election officials

Ensure access to free interpreter-guide/Deafblind interpreting services to support the voting process

Create accessible voting information and materials (e.g., Braille, large print, etc.)

Provide accessible polling sites, voting machines, and ballots, taking steps to ensure voting secrecy. For example, ballots can be made with tactile cues to align voting ballots within a template and tactile cues to vote yes or no. Persons with deafblindness may require training on how to use accessible voting machines and ballots from election officials. Accessible polling sites should include removal of physical barriers, accessible signage, and staff to provide support

Ensure reasonable accommodations for individuals that require it, such as allowing interpreter-guides/Deafblind interpreters or other live assistance to accompany persons with deafblindness throughout the process, accessible postal voting, or accessible e-voting that can be done remotely or in advance of the election day

Create accessible information on candidates, including debates (e.g., through captioning, accessible transcripts, etc.). This may involve setting standards for political parties and TV / radio networks on providing accessible information

Enable observation of the voting process by persons with disabilities or third parties to audit and assess the accessibility of the voting process, ensuring that the requirements of persons with deafblindness are considered, or appoint a person with deafblindness to the independent body that oversees elections^[i].

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:

Removal of barriers for official registration (e.g., providing communication supports for OPDs to register, free or sliding scale registration fees, and removal of unnecessary re-registration procedures to ensure greater accessibility). Registration should not be a pre-requisite for taking part in consultation processes. However, where these regulations are slow to change, other OPDs and NGOs should help OPDs of persons with deafblindness to address the gaps and ensure they can consistently function, as official recognition is often a requirement for participating in official consultation processes and may be necessary for funding

Increased funding and support to obtain funding. Funders can set up OPDs of persons with deafblindness to use fiscal sponsors, be involved in partnership grants, apply for small grants, and should remove administrative barriers or eligibility criteria that are likely to affect funding opportunities (e.g., submission of an annual report). If funding is through a partner organisation or fiscal sponsor, steps should be taken to ensure that OPDs of persons with deafblindness are making decisions, including financial decisions, that affect them. Additionally, it is crucial to ensure fiscal sponsors are building their capacities. Funding should include accessibility costs (e.g., interpreter-guides/Deafblind interpreters) to make sure participation is genuine

Support in tracking consultation opportunities provided by umbrella OPDs, UN agencies, national disability councils, and others. For those OPDs that do not have access to interpreter-guide/Deafblind interpreting services, a system can be devised in partnership with other organisations to help to facilitate their participation, which may also include assisting with reasonable accommodations and communications between parties. Government and UN stakeholders that regularly seek input from OPDs should develop systems for reaching out to OPDs of persons with deafblindness to ensure their participation. National disability councils can play a key role in improving the participation of OPDs of persons with deafblindness and addressing the gaps, and they should promote the appointment of persons with deafblindness on committees and working groups

The inclusion of accessibility measures and reasonable accommodations, especially interpreter-guides/Deafblind interpreters, in consultative processes. This may also include planning with plenty of advance notice to enable booking for interpreter-guides/Deafblind interpreters, providing information in accessible formats, sending information in advance or preparing ‘pre-event sessions’ to cover some of the content prior to the event, and moving at a slower pace to ensure interpreter-guides/Deafblind interpreters have sufficient time to interpret. Accessibility guides can ensure the smooth participation of persons with deafblindness in consultation processes. In some countries where there are very few supports for deafblind communication, linkages between OPDs of persons with deafblindness and CBR services may be needed to ensure that persons with deafblindness have the necessary communication skills to participate

Increased technical support to improve organisational functioning in organisational development (e.g., leadership and governance development, financial management, strategic planning, programme or project planning, monitoring and evaluation, membership growth and retention, etc.) and in methods for effectively representing persons with deafblindness (e.g., advocacy and lobbying, campaigning and communications, research, evidence-based reporting, CRPD monitoring, etc.)

Use OPDs of persons with deafblindness and not proxies for the voice of persons with deafblindness. The wider deafblindness community includes many allies, such as organisations of parents and family members of persons with deafblindness, deafblindness experts and professionals, service providers, disability NGOs, and deafblindness networks. WFDB and its members rely on and work in partnership with these allies. Habits and linkages can form, resulting in consultation processes that usurp the voice and direct input from OPDs of persons with deafblindness. This can affect policy and programmatic decision-making, for example, on the priorities and approaches used in services. Governments, UN agencies, and others that lead consultation processes have a responsibility to directly invite and support the participation of OPDs of persons with deafblindness in decisions that affect them, and allies should take steps to adjust their roles and serve as facilitators to encourage and support the participation of persons with deafblindness, using a partnership model^[iii].

^[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.

Recommendations

Governments

Develop guidance and advice for persons with deafblindness and election officials on measures and supports to enable persons with deafblindness to vote

Provide access to interpreter-guide/Deafblind interpreting services for voting, serving in appointed or elected roles, and participating in public consultation processes, including for OPD members

Provide voting information, including information on candidates / parties, and information open to public consultation available in accessible formats

Support reasonable accommodations of persons with deafblindness for voting, serving in an appointed or elected role, and participating in consultation processes

Remove barriers for official registration of OPDs of persons with deafblindness to enable their full and effective participation

Enable observation of the voting process by persons with disabilities or third parties to audit and assess the accessibility of the voting process, ensuring that the requirements of persons with deafblindness are considered, or appoint a person with deafblindness to the independent body that oversees elections

Establish mechanisms and guides for informing OPDs of persons with deafblindness about consultation opportunities and support them throughout the consultation process

OPDs and NGOs

Provide tailored technical support to OPDs of persons with deafblindness based on the evolving learning needs of the group, rather than on disability sector trends

Create partnership models that increase the capacity and exposure of OPDs of persons with deafblindness and mentor OPDs to take on increasing responsibilities with demonstrated achievements

Track opportunities for consultation for OPDs of persons with deafblindness and establish procedures for ensuring their direct input, including the CRPD and SDG monitoring processes

Express the requirements of persons with deafblindness, especially of interpreter-guides/Deafblind interpreters, in all disability advocacy tools (e.g., briefings, reports, submissions, etc.) where the requirements and recommendations of persons with disabilities are mentioned

Advocate to political parties to adopt disability mainstreaming to make their processes more inclusive and to encourage more persons with disabilities to participate in political processes

Donors and Research Institutes

Increase funding opportunities for OPDs of persons with deafblindness and adapt administrative procedures to remove barriers for them (e.g., through fiscal sponsorship, reduced grant sizes for small or emerging organisations, and partnership funding models that ensure agency of persons with deafblindness)

Encourage funding programmes and proposals on persons with disabilities to include OPDs of persons with deafblindness as a priority underrepresented group

Support the technical assistance to OPDs of persons with deafblindness based on the evolving learning needs of the group, rather than on disability sector trends.

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