The twin-track approach for disability inclusion requires disability-specific measures (e.g., disability-specific programming, policies, procedures, etc.) to meet the requirements of persons with disabilities, as well as consistent and systematic mainstreaming of disability across all programmes, policies, and processes. To better illustrate the twin-track approach, features or measures that are commonly required by persons with disabilities are often identified as preconditions for disability inclusion – i.e., a prerequisite to their inclusion[i].
For example, for education to be inclusive for persons with disabilities, certain steps or preconditions are required, such as identification and assessment of the disabilities of children, rehabilitation services to make them school-ready, access to assistive devices or technologies, and access to live assistance required during school, awareness raising of those in education to prevent discrimination, measures to make schools more accessible, etc. These steps or preconditions also apply to other services (e.g., employment, social protection, recreation, and more).
Preconditions for inclusion are the essential building blocks or “foundational aspects that are indispensable in addressing the requirements and views of persons with disabilities and should be considered in public policy- making and programming across all sectors”[ii]. This section considers the preconditions or disability-specific measures necessary for persons with deafblindness to support access to services across all sectors looking broadly at disability-specific measures that benefit persons with deafblindness as well as deafblindness-specific measures. These preconditions include:
[i] Pacific Disability Forum, Guideline to Pre-Condition to Inclusion: Persons with Disabilities – COVID-19 Response, Ref. No. COVI-19_PDF_08, https://www.google.com/search?q=preconditions+for+disability+inclusion&oq=preconditions+for+disability+inclusion&aqs=chrome..69i57j33i160l2j33i22i29i30l7.5476j1j15&sourceid=chrome&ie=UTF-8#:~:text=pre%2Dcondition%20for,uploads%20%E2%80%BA%202021/03, 9 April 2020.
[ii] 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.
To ensure that persons with deafblindness have the appropriate supports and services, deafblindness needs to be officially recognised, in law, as a distinct disability of combined dual sensory impairment. In the first global report, WFDB identified the lack of official or legal recognition of deafblindness as a key barrier to the availability of support, and where countries “do officially recognise deafblindness as a distinct disability…, (countries who recognise this distinct disability) are more likely to provide specific support services”[i] for persons with deafblindness. Legal recognition not only increases the likelihood of tailored services, but it is also a practical necessity within most national legislative systems. It is not known how many countries lack official recognition of deafblindness or definitions that are partially adequate, and systematic legislative and policy research is needed to assess the gaps.
This direct link between legal recognition and the availability of deafblindness-specific supports and services is a key first step to addressing the exclusion of persons with deafblindness in many countries. Often, deafblindness is mistakenly considered to be a combination of two disabilities – deafness and blindness – resulting in a determination of ‘multiple disabilities’ instead of a distinct, standalone disability of deafblindness. Even the words ‘deafblindness’ and ‘deafblind’ are often not recognised by spell check features in digital tools, such as computer operating systems, software, mobile phones, etc., forcing the spelling to either be hyphenated as ‘deaf-blind’ or as two words ‘deaf and blind’. This results in official documents portraying deafblindness as two impairments rather than a single impairment, which adds to the confusion about deafblindness.
Misperceptions about deafblindness as multiple disabilities limit the potential of legal recognition of deafblindness as a unique disability, which would in effect filter deafblindness-specific considerations across all services. For example, if a child has been diagnosed with deafblindness, their parents could request that the school teach deafblind communication methods to their child. If the child is considered to have ‘multiple disabilities’, it may be harder to request deafblindness-specific supports, thus services are less responsive to the requirements of persons with deafblindness[ii].
A respondent to WFDB’s survey noted that general disability categories, such as physical, mental, sensory, and multiple disabilities, may also be problematic for persons with deafblindness. This is because deafness and blindness are more commonly understood to be sensory disabilities, whereas deafblindness may be misplaced as multiple disabilities rather than as a distinct sensory disability.
Another common misperception is that deafblindness is a condition where the person is completely deaf and blind. This misperception, combined with a gap in the legal recognition of deafblindness, often forces persons with deafblindness to choose between blindness or deafness based on which of the two senses is more significantly affected. However, accessibility measures and services for the blind or the deaf do not usually meet the requirements of persons with deafblindness because of the combined dual sensory impairment and the inability of persons with deafblindness to compensate for hearing loss with their sight and vice versa[iii]. For example, sign language interpretation services for the deaf are usually insufficient for many persons with deafblindness because these sign language interpreters have not been trained in deafblind communication, orientation, description, and mobility support. Similarly, guiding services for the blind are insufficient in providing deafblind communication. Though persons with deafblindness may access these services for the blind or the deaf, it is often because they have no other options, and the prospect of no services would render them completely isolated.
The best way to ensure that deafblindness is officially recognised is to ensure that it is listed among other types of disabilities recognised in national disability legislation. This national legislation may not be reviewed often and may involve a lengthy process to amend. In lieu of national legal recognition, local legal recognition may be considered as an alternative. For example, a respondent to WFDB’s survey highlighted that there was local recognition of deafblindness in Mexico’s Jalisco State, but not at the national level. In countries where national legislative changes are delayed, this may be a viable stop-gap measure. However, national recognition is preferable, as local legislation is likely to result in inconsistencies across national regions and inequalities within the country, including inequalities in service provision.
The underlying cause of the lack of legal recognition of deafblindness is an insufficient understanding and awareness of deafblindness. This lack of understanding is caused by insufficient representation of diversity of persons with deafblindness and their communication requirements, by policymakers, health and rehabilitation professionals, and disability advocates.[iv] Because health and rehabilitation professionals are responsible for diagnosing and determining the disability status of individuals, they are gatekeepers of official recognition, and therefore, play a key role. OPDs also play a role in advocating for revised national legislation and in negotiating the revised provisions, including the types of disability and how they are defined. If OPDs of persons with deafblindness are not included in these negotiations, it is unlikely that deafblindness will be fully and correctly recognised.
[i] 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. 8.
[ii] Ibid., p. 9.
[iii] Ibid.
[iv] Ibid.
WFDB identifies the acceptance of the Nordic definition of deafblindness as a good practice. The Nordic definition provides a lengthy but thorough explanation of deafblindness that may be referred to in legislation and policy and with the full text supplied as a resource to relevant parties. National legislation is written in the official legal language of a country, and therefore, it is essential that WFDB members and allies formulate an official definition of deafblindness in the working languages of each country that lacks this.
Deafblindness is a combined vision and hearing impairment of such severity that it is hard for the impaired senses to compensate for each other. Thus, deafblindness is a distinct disability.
Main implications
To varying degrees, deafblindness limits activities and restricts full participation in society. It affects social life, communication, access to information, orientation, and the ability to move around freely and safely.
To help compensate for the combined vision and hearing impairment, especially the tactile sense becomes important.
Comments:
On the combined vision and hearing impairment
The severity of the combined vision and hearing impairment depends on:
On the distinct disability
The fact that it is hard for the impaired senses to compensate for each other means that:
On activities and participation
Deafblindness limits activities and restricts full participation in society. In order to enable the individual to use their potential capacity and resources, society is required to facilitate specialised services
The individual and their environment should be equally involved, but the responsibility for granting access to activities lies on society. An accessible society should at least include:
A person with deafblindness may be more disabled in one activity and less disabled in another activity. Variation in functioning might be the consequence of both environmental and personal factor
Specialised competence related to deafblindness, including an interdisciplinary approach, is vital for proper service provision”[i].
[i] Nordic Welfare, Nordic Definition of Deafblindness, https://nordicwelfare.org/wp-content/uploads/2018/03/nordic-definition-of-deafblindness.pdf, accessed May 2022.
National disability legislation does not need to utilise the full Nordic definition due to its length, but it should list deafblindness as a distinct disability. Furthermore, an official definition of deafblindness should include the following key elements:
Official recognition should be based on the social model of disability with functional assessment and not mere medical evaluation of vision and hearing
Governments
OPDs and NGOs
Donors and Research Institutes