[dbaust] A tribute to the life of Lex Grandia, President of the World Federation of the Deafblind

From: Erika Webb <erikaweb@xxxxxxxxxxxx>
To: Erika Webb <erikaweb@xxxxxxxxxxxx>
Date: Tue, 8 May 2012 18:11:23 -0700 (PDT)
A tribute to the life of Lex Grandia, President of the World Federation of the 
Deafblind (WFDB) by William RowlandFrom World Blind Union E-Bulletin - April 
2012 edition 
Of very few people can it be said that they are universally loved, but such a 
person was Lex Grandia, President of the World Federation of the Deafblind. 
 Lex's untimely death on 19 April this year not only deprived WFDB of one of 
its most remarkable leaders but the disability rights movement globally of one 
of its most powerful advocates and memorable personalities.
 
Lex was born in the Netherlands in 1950.  His premature birth was the cause of 
severe hearing loss, while over-oxygenation resulted in his permanent 
blindness.  He grew up in an institute for the blind and went on to attend the 
universities of Utrecht and Amsterdam, graduating with a PhD in Theology and a 
specialization in psychotherapy and hospital counseling.
 
Lex's first job was in youth counseling, but he also qualified as a part-time 
minister in the Dutch Reformed Church and did broadcasting. He wrote two books 
on Bibliodrama and even found time to learn to play the piano and do sculpting 
in stone.
 
Lex's organizational life began in 1978 when he became a regional chair in the 
national blindness organization in the Netherlands.  Over the coming decades he 
would hold many positions of increasing prominence, first within the deafblind 
organization of his own country and then within the European Deafblind Network 
and eventually as board member of the European Disability Forum.
 
At the founding of the WFDB in 2001 Lex was elected as Secretary General.  In 
2005 he became President, a position he held until his death seven years later. 
 From 2003 to 2007, according to his own testimony, he worked nearly full-time 
on the drafting of text for the CRPD.  He is credited with the inclusion in the 
text of references to deafblind persons and tactile communication.  He was a 
leading activist during the UN negotiations in New York and also took his turn 
in chairing the International Disability Caucus, a coalition of some 70 DPOs 
lobbying for the Convention.  Lex represented his organization in the 
International Disability Alliance during the entire period of the negotiations 
and was elected chairperson of IDA for the period 2007/8.


At the coming into force of the CRPD in May 2008, Lex delivered a truly 
inspirational message on behalf of the 1 billion persons with disabilities 
around the world.
 
Within WFDB Lex worked indefatigably for the establishment and strengthening of 
national organizations of the deafblind and he was particularly proud to have 
had a hand in the formation of the African Federation of the Deafblind.
 
In 1995 Lex married his Danish wife Ann Thestrup and went to live in Aalborg. 
 As a couple they were inseparable, with Ann playing her supportive role with 
greatest care and wisdom.   She will long be remembered as a member of the IDA 
family in her own right.
 
Following the announcement of Lex's death, messages of condolence and 
admiration poured in from around the world.  In a poignant message posted on 
its website the IDA chairperson Diane Richler of Inclusion International had 
this to say: "The news of the death of Lex has left the disability community 
around the world with an aching heart.  As testimonies from countless people 
have already shown he was an inspiration to the entire disability movement for 
his determination, his wisdom, his creativity, his gentleness and his humour. 
 Within IDA he helped to calm troubled waters, ease tension and keep us moving 
forward.
  We have lost a friend -- but not his inspiration."
 
The WFDB emerged as an independent organization from the ranks of the WBU and 
the WBU hereby extends to the WFDB and to IDA, and especially to Ann his wife 
and his family its heartfelt condolences.


Below is a link to the memorial website set up to honor Lex 
Grandia.http://memorialwebsites.legacy.com/lexgrandia/homepage.aspx
[dbaust] A tribute to the life of Lex Grandia, President of the World Federation of the Deafblind

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