References

World Health Organization & World Bank, World report on disability. 2011: World Health Organization. Groce, N. and M. Kett, The Disability and Development Gap, in Leonard Cheshire Working Paper Series. 2013, Leonard Cheshire Disability and Inclusive Development Centre: London. The Deafblind Nordic Cooperation Committee. The Nordic definition of deafblindness. n.d. [cited 2018 June 2]; Available from: http://www.fsdb.org/Filer/DBNSK English.pdf. Dammeyer, J., Characteristics […]

Disclaimer

ACKNOWLEDGEMENT AND DISCLAIMERS The project is coordinated by Rune Jensen and Ximena Serpa under the supervision of Geir Jensen with technical support from Alexandre Cote (IDA-CIP), Bailey Grey and Alison Marshall (Sense International), Morgon Banks and Islay MacTaggart of International Centre for Evidence in Disability (ICED). The WFDB and SI surveys were developed with the […]

Conclusions and Recommendations

Combining the largest population-based analysis of persons with deafblindness conducted to date (disaggregation of 19 population-based surveys from low, middle and high-income countries), an academic literature review, surveys conducted amongst members and partners of WFDB and Sense International, and consultation with more than 75 women and men with deafblindness who took part in the Helen […]

In Our Own Words – Eulália

“My name is Eulália Alves Cordeiro. I am a person with deafblindness. I’m a counsellor at the Municipal Counsel of the Persons with Disabilities in the capital of São Paulo. “Since 2002, persons with deafblindness from the Brazilian Association of Persons with Deafblindness (named ABRASC) started to participate directly in the Municipal Counsel of the […]

In Our Own Words – German

“I started to lose my vision around 10 years old and, by the time I was 14, I had lost all my sight. My family tried various solutions until a doctor told me the best ‘medicine’ was education! So then our focus shifted to integration into daily life. “I tried to go to a regular […]

In Our Own Words – Carlos & Sofia

Wedding between two people with deafblindness

“We are a couple of two deafblind persons who have Usher syndrome. We’ve been married for 12 years, living in Sao Paulo, Brazil. I (Sofia) use a hearing aid that helps me recognise sounds and noises. Carlos Jorge is totally deafblind. “In the first building we lived in, other residents didn’t know how to communicate […]

In Our Own Words – Edgar Reyes

Teacher with deafblindness at school

“After working for 20 years as director of services of the unit for blind people at the National Library of the Dominican Republic, I applied alongside other professionals without disabilities to become a teacher for secondary level students. It was the first time that a person with deafblindness participated in such an application process. I […]

Ongoing Efforts – Romania & Kenya

Early identification and intervention in Romania By the time children with deafblindness reach school age, it is often too late for them to make significant progress in their development and rehabilitation, which can dramatically affect their learning, communication and socialisation. In 2007, teachers in Romania raised this issue, and Sense International Romania developed a programme […]

Ongoing Efforts – Germany

University of Cologne

Peer counselling to support the transition from school to work for young persons with deafblindness in Germany For many young people, the transition from school to working life is impeded by two essential challenges. Firstly, there is a lack of deafblind adult role models. As the majority of young persons with deafblindness grow up in […]

Ongoing Efforts – India

Man with deafblindness at work

Vocational training, self-employment and social participation in India The recently enacted Rights of Persons with Disabilities Act 2016 includes the provision of a 1% job reservation for persons with multiple disabilities, including persons with deafblindness. Prior to the implementation of the Act, there was no provision for persons with deafblindness; however, it is still too […]

Ongoing Efforts – Peru

Group of advocates for deafblindness

From laws to enforceable regulation, the long advocacy road towards recognition and the development of interpreter-guide service. Sense International, Peru In 2010, the Peruvian authorities passed two key laws. Law 29524 recognised deafblindness as a unique disability and Law 29535 recognised Peruvian sign language. The laws had different fortunes: while Law 29524 was regulated the following […]

The Long Read

Camila Indalecio, una madre con sordoceguera

THE LONG READ: BEING A WOMAN AND A MOTHER WITH DEAFBLINDNESS Camila Indalecio, Brazil INTRODUCTION The history of women is marked by struggle and challenges, as we fight for equality and for opportunities within society. Women are often excluded and discriminated against simply because of our gender, and we often have to fight to overcome […]

Persons with Deafblindness and Participation in Political & Public Life

Woman with deafblindness and a soccer team

OUR VOICE The survey found that, whilst few countries legally restrict the right to vote of persons with deafblindness, few actually provide support to enable political participation. At the 2018 Helen Keller World Conference, WFDB members were keen to share their experiences about political participation and engagement in public life. There is an acute perception […]

Persons with Deafblindness and Social Life

Wedding between two people with deafblindness

WHAT DOES THE DATA SAY? The country-level analyses provided minimal information on social life, with the exception of marital status and the presence of biological parents in the household for children. People with deafblindness are less likely to be married than people without disabilities in all datasets except Sudan and Uruguay. Women with deafblindness were […]

Persons with Deafblindness and Health

Child with deafblindness in a wheelchair

WHAT DOES THE DATA SAY? The country analyses provided little data on health status and access to healthcare. The only indicator of health status was the presence of additional disabilities. Figure 9 shows the proportion of persons with deafblindness with other functional difficulties in each dataset. Between 20% and 75% of persons with deafblindness reported […]

Persons with Deafblindness and Education

Schoolboy with deafblindness and his friend laughing

WHAT DOES THE DATA SAY? Excluding Uruguay and Ireland due to the small sample sizes, nine datasets provided evidence on school enrolment among children with deafblindness aged 5 to 17 years. Children with deafblindness were statistically less likely to be in school than children without disabilities across each of the datasets, with the biggest gaps in […]

Persons with Deafblindness and Work

Social worker and woman with deafblindness

WHAT DOES THE DATA SAY? Only three studies included in the literature review, two from the United States and one from Denmark, examined access to work among persons with deafblindness [4, 19, 20]. All found barriers to engaging in employment, although sample sizes were small and not representative of the broader population. Some challenges highlighted […]

Persons with Deafblindness and Poverty

Daugther with deafblindness and mother

WHAT DOES THE DATA SAY? The majority of the studies included in the literature review did not provide evidence on the socio-economic status of people living with deafblindness. In all 11 countries covered by the data analysis, households that included persons with deafblindness were more likely to be in the bottom 40% in terms of […]

Persons with Deafblindness and Inequality

Schoolgirl with deafblindness communicating

WHAT DOES THE DATA SAY? The data collection undertaken for this report combines a review of academic literature and two surveys undertaken among members and partners of WFDB and Sense International, as well as case studies. Additionally, a quantitative analysis of census and other large survey data was undertaken, representing the largest and most internationally […]

Key preconditions for inclusion

KEY PRECONDITIONS FOR INCLUSION RECOGNITION OF DEAFBLINDNESS & THE PROVISION OF SPECIFIC SUPPORT SERVICES To participate and be included in community, work, education or political life, persons with deafblindness require both the removal of environmental barriers as well as those that prevent access to quality support services. Accessibility features for persons with deafblindness include a […]

Overview of international obligations under CRPD

The CRPD applies to all persons with disabilities without distinction and all human rights standards apply to all persons with disabilities. The diversity of persons with disabilities (and their diverse inclusion requirements) is recognised and serves as a core principle. The CRPD also acknowledges the imperative to promote and protect the rights of persons with disabilities […]

The Diversity of Persons with Deafblindness

Deafblindness is often underestimated and misunderstood, and this contributes significantly to the many barriers faced by persons with deafblindness. Some persons with deafblindness are completely deaf and blind, but many have a little sight and/or hearing they can use. Based on the Nordic definition [3], the WFDB defines deafblindness as a distinct disability arising from a […]

Foreword

Child with deafblindness and his teacher

Echoing the changes triggered by the UN Convention on the Rights of Persons with Disabilities (CRPD), the adoption of Agenda 2030 and the Sustainable Development Goals (SDGs) emphasised the importance of inclusive development and leaving no one behind. Worldwide, there is a growing momentum for change based on inclusion, which marks a significant shift from […]