Persons with deafblindness are often excluded from services, support, and social life because of their disability. “Discrimination on the basis of disability means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural civil, or any other field”^[i]. Therefore, the exclusion of persons with deafblindness is largely due to discrimination and stigma – i.e., the stereotypes, misperceptions, and assumptions about persons with disabilities which often derive from a lack of understanding about persons with deafblindness.

A common misperception is that persons with deafblindness cannot be helped, supported, or reached because they will not understand the situation or because there is a presumption of inability. These misperceptions only lead to further exclusion and marginalisation. The table below sets out some common misperceptions and facts about persons with deafblindness:

In addition to misperceptions about deafblindness, some forms of stigma apply the medical model, viewing deafblindness as a problem that belongs to the individual, rather than recognising the systemic attitudinal and environmental barriers that impede the participation of persons with deafblindness. This often leads to unresponsive or inappropriate responses due to the bias of focusing on the condition of deafblindness rather than the barriers faced by the individual, particularly among frontline professionals^[iii].

Persons with deafblindness experience vertical discrimination – i.e., discrimination between impairment groups of persons with disabilities. Persons with deafblindness are often referred to as one of the most marginalised and underrepresented groups of persons with disabilities. This is largely due to the communication barriers that persons with deafblindness face (e.g., lack of access to interpreter-guides/Deafblind interpreters, information, and support to keep abreast of developments). Moreover, persons with deafblindness are often excluded because of the diverse needs and requirements, resulting in a lack of recognition or support by the other groups of persons with disabilities. Although there is some recognition of persons with deafblindness as an underrepresented group within the wider disability movement, persons with deafblindness are often not represented in OPDs, and thus, are forgotten or excluded because they are perceived to be too difficult to include. This impacts programmes and policies because persons with deafblindness are excluded from the outset.

Among persons with deafblindness, those with higher support needs, such as persons with pre-lingual deafblindness, are likely to experience even greater marginalisation and exclusion. It is, therefore, essential to consider the requirements of the most marginalised and hardest-to-reach persons with deafblindness and to recognise the diversity of requirements. For example, a young person with pre-lingual deafblindness may require an interpreter-guide/Deafblind interpreter and some additional rehabilitation to transition into a new job, whereas a young person with post-lingual deafblindness may require access to magnifiers, a special computer monitor, and access to captioning services during meetings. The costs between these two examples can be significant, and it should not be assumed that persons with high support needs are incapable of working simply because their support needs cost more or may take more time to implement.

Governments often do not invest in the supports and services for persons with deafblindness because the prevalence is lower than other disabilities. It is, therefore perceived as being too insignificant of a number of people to warrant the development of specialised or tailored supports or services. This is another form of vertical discrimination that places too much value on prevalence as a justification for allocating funding.

Persons with deafblindness also experience horizontal discrimination – i.e., discrimination between groups with clearly defined identities or characteristics (e.g., race, sex, language, religion, political or other opinion, nationality, ethnicity, indigenous or social origin, property, birth, age, or other status). This leads to multiple and intersecting forms of discrimination – i.e., where a person experiences discrimination on two or more identities or characteristics, leading to discrimination that is compounded or aggravated^[iv]. There is very little research on intersectional or multiple discrimination of persons with deafblindness. Because persons with deafblindness experience high levels of social exclusion, it may be difficult to recognise the intersecting nature of multiple discrimination.

Stigma and discrimination can come from all levels of society, including families, local communities, elected officials, civil servants, schools, health centres, pharmacies, shops, employers, etc. Persons with deafblindness often rely on family members for support, and families can sometimes act as a filter or barrier to social inclusion. In addition, persons with deafblindness often do not have the communication support to coordinate and deliver awareness-raising activities to combat stigma and discrimination among these groups.

^[i] Convention on the Rights of Persons with Disabilities, A/RES/61/106, 13 December 2006, Article 2.

^[ii] Enabled.in, Deafblindness – Facts, Myths, and Truth, https://enabled.in/wp/deafblindness-facts-myths-and-truth/, 24 June 2014.

^[iii] National Centre on Combined Vision and Hearing Impairment / Deafblindness, Eikholt Annual Report, October 2021, p. 6.

^[iv] Committee on the Rights of Persons with Disabilities, General Comment No. 3 on women and girls with disabilities, CRPD/C/GC/3, 25 November 2016, para. 4c.