June 27th: A historic day to acknowledge the rights of persons with deafblindness.

On the 27th of June 1880, Helen Keller was born in Tuscumbia, Alabama. For this reason, the 27th of June is celebrated as International Day of Deafblindness, encouraged to increase the public awareness for people with deafblindness and their rights.

WFDB uses this day to share our advocacy work and insist on the importance of persons with deafblindness having access  to services that meet each individual’s
needs. The African Federation of the Deafblind (AFDB), a constituent branch of the World Federation of the DeafBlind, has joined WFDB in commemorating the International Day of DeafBlindness through a press release under the theme inclusive education the meaningful development for all.

Helen Keller became deafblind when she was 19 months old due to an illness and with time, became the pioneer of self-advocacy for persons with deafblindness. At a time when higher education was scarcely available, and only accessible to a few, she graduated with a Bachelor of Arts degree from Harvard. Her network of supporters at the time included the author Mark Twain and Standard Oil magnate Henry Huttleston Rogers.

Helen Keller did not just oppose and overcome the barriers in society but devoted her life to advocate for disability rights. She was also an advocate for civil rights also for black people in the United States.

Regretfully, on June 1st1968 Helen Keller passed away, at the age of 87, in her home at Arcan Ridge, Connecticut. Her memory though, lives on and serves as a source of inspiration.

Helen Keller’s story is not unique. There were others like Ragnhild Kåta (23 May 1873 – 12 February 1947) from Norway and countless others from around the world. Like Helen Keller, Ragnhild Kåta lost her vision and hearing due to a childhood illness but was able to live and communicate independently. The techniques used to educate Ragnhild were shared with and known by Helen to serve as an inspiration for learning.

In a world in turmoil these women have showed the world what can be achieved if only gaps are bridged and inclusive education, work and culture are provided. They have demonstrated that persons with deafblindness can be fully integrated in society on equal terms.

Knowing that our group represents between 0.2% and 2.0% of the global population, the stories shared by disability advocates like Helen Keller and Ragnhild Kåta shows us that the key factor for success is to receive adequate support according to the individual and specific needs of persons with deafblindness.

World Federation of the Deafblind (WFDB)

In 1977 the first Helen Keller Conference (HKWC) in New York, USA, organised by “the Committee on Service to the Deaf-Blind” of the World Council for Welfare of the Blind. The aim of the conference was to provide opportunities for persons with deafblindness to have their own forum to learn from peers and have the possibility to share personal experiences of their deafblindness.

Subsequent conferences were held every four years and at the 6th HKWC in Paipa, Colombia, 1997, long time discussions on a global organisation to be founded by and for persons with deafblindness were formalised.

At the 7th HKWC held in Auckland, New Zealand, 2001, WFDB was officially founded at the very first general assembly. Since then, the WFDB has organised the HKWC with national deafblind organisations as hosts.

Persons with deafblindness worldwide had finally united, raising a legitimate voice to speak our case and advocate our rights. To fight for our place in society, on equal terms as all others. To work for an improved quality of life through proper support services, publicly funded, including communications through clear speech, sign language, Easy Read, Braille, augmentative and alternative communication, and all other accessible means of communication of choice by persons with deafblindness as well as mobility and guiding.

Convention on the Rights of Persons with Disabilities (CRPD)

As a founding member, the WFDB contributed to the establishment of the International Disability Alliance (IDA) in 1999. Persons with deafblindness were finally represented in the disability movement and international arena.

The second president of the WFDB, Lex Grandia, also served as Chair of IDA when he actively participated in the development of the UN Convention on the Rights of Persons with Disabilities (CRPD) that entered into force in 2008. Since the adoption of the UN CRPD, the focus on WFDB was set on ensuring inclusion of persons with deafblindness in the implementation of the convention.

On a parallel track, in its endeavour to eradicate extreme poverty, improve maternal health, empower women and save the environment (to mention but a few of the topics) the UN launched the Millennium Development Goals (MDGs) in 2002. Through the membership in IDA, deafblind participation in this work was secured. The UN Sustainable development Goals (SDGs) followed the MDGs in 2015, providing a blueprint for peace and prosperity for people and the planet, now and into the future. The SDGs gave hopes of an inclusive future also for persons with deafblindness. The SGDs also provided opportunities to pursue opportunities to raise awareness and support through increased acknowledgement and recognition of deafblindness as a unique and distinct disability on a universal scale. One thing is clear to us, without ensuring full inclusion of persons with deafblindness in implementing the CRPD and achieving the SDGs human rights, democracy and equality would never be achieved.

First global report on Deafblindness

In August 2016, following a decision by the WFDB Executive Council at a meeting in Guayaquil, Ecuador, the WFDB took the lead in the process of developing a first global report on the situation and status of persons with deafblindness.

Supported by IDA and Sense International, with funding from among others such as NMFA and DFID, we could connect with consultants and researchers from the London School of Hygiene and Tropical Medicine.

The rest is history as the WFDB report was published in 2018, titled “At risk of exclusion from CRPD and SDGs implementation: Inequality and persons with deafblindness”, available in different formats and languages.

The report and its findings were presented to the world at events in various events at the UN in Geneva, New York as well as at House of Lords at the British Parliament in November 2018.

Recent activities

2019 was a year of transition for WFDB. Some adjustments have been made regarding funding and reinforced our partnerships with IDA amongst others. There have been new additions of European projects in the global south. Moreover, we are consortium partners in a project called SHAPES, funded by the European Union’s Horizon 2020 programme involving a total of 14 European countries and lasting 48 months counting from November 2019. This a project led by Maynooth University (Ireland), aiming to facilitate a long-term healthy and active ageing and creating an integrated IT platform that will bring together digital solutions. Our objective is to ensure that persons with deafblindness are involved in the development of all solutions the research develops.

2020 was supposed to be a milestone for the deafblind advocacy work on a global scale. We started on a high note, with prepared strategic plans that included a second global report on deafblindness, to present best practices on how to resolve the issues presented in the first. A global campaign was planned to support our work as well as workshops prepared in the global south. Due to COVID-19, priorities were reshuffled, and our efforts went into ensuring an inclusive response of persons with deafblindness. We released recommendations on inclusive policies from the global deafblind community, amongst others. However, the consequences for our group was devastating and a state of forced isolation was experienced worldwide.

Yet, as an organisation, our past successes have enabled us to advocate for our needs even in this time at a high level, contributing to the overall work of the broader disability movement.

A beacon of hope in this situation can be found in Uganda. In June 2020, the National Association of the Deafblind in Uganda (NADBU) held a press conference as an advocacy tool to assess how persons with deafblindness should be included in all government activities during COVID-19 pandemic and prior to the celebration of International Deafblind Day, in line with the UNCRPD and SDGs. Participants were provided with transparent face masks for improved communication.

With our partners and supporters, we will still move forward this year, closer to our dreams of inclusion, our dreams of accessibility, our dreams of equality and independent living.

It is all our voices that will provide us with our rights, and we will continue leading the way.

Will you walk with us?

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