Skip Content

Sense pays tribute to Lex Grandia, President of the World Federation of the Deafblind

24 April 2012

Lex Grandia, President of the World Federation of the Deafblind (WFDB), died on 19 April with his wife Ann by his side.

Lex, who was deafblind himself, was one of the most significant figures in the world of deafblindness. He worked tirelessly all his life for our cause and was a champion of human rights.

Lex's warm and generous personality touched everyone he met. We will all be diminished without him and the world is truly a poorer place without his wisdom, laughter and piano playing. Our thoughts are with Ann and his family at this sad time.

Gillian Morbey
CEO, Sense and Sense International

Lex's life

Lex played an active part in campaigning in the international deafblind arena. At the Deafblind International conference held in September 2011 in Sao Paulo, Brazil, Lex was presented with the the organisation's Distinguished Service Award.

Throughout his career, Lex enriched the lives of so many individuals who are deafblind, as well as the professionals who work in the field.

After receiving a Ph.D. in Theology in the Netherlands, Lex worked was a counsellor and part-time minister.

He started his work with individuals with disabilities as the regional chair of the National Blind Organisation in the Netherlands. This was followed by his involvement in the national organisation for deafblind people.

In the early 1990s he broadened his participation by becoming active in the European Deafblind Network (EDbN), in which he was elected as the secretary. He worked for EDbN until 2001.

By this time, his contribution to the field of deafblindness and disabilities was well established. As a result of his hard work he was elected to the board of the European Disability Forum, serving from 1997 through 2011.

The World Federation of the Deafblind was founded in 2001, and once again his skills were needed. He was elected as the Secretary General and in 2005 became the President of WFDB.

As a member of the International Disability Alliance, Lex became involved in drafting the UN Convention on the Rights of Persons with Disabilities. Through his gallant efforts deafblindness is referred to in this important UN Convention.

His international efforts spread further through his involvement as Chair of the International Disability Alliance. In this capacity he had the opportunity to address the special session of the UN General Assembly in New York and the Human Rights Council in Geneva on behalf of the International Disability Alliance.

As part of his work as the president of WFDB, Lex was instrumental in the development of various national organisations of persons with deafblindness. He supported the European Deafblind Union and the organisation of the African Federation of the Deafblind.

Wording courtesy of: The Deafblind International news release Prestigious awards presented at the XV DbI Conference Sao Paulo Brazil, 30 September, 2011.

In Lex's plenary session at the conference, he said:

"We need to make a clear plan of what we want to fight for in the negotiations with authorities.

"We need to make priorities: what is the most important, what comes first, what can be done now and what has to grow in the process.

"We cannot do it all alone, so we have to make alliances with, for instance, our blind and deaf friends and those who are advocating for their rights".


First published: Tuesday 18 June 2013
Last updated: Friday 6 December 2019