Remembering Bengt Lindqvist (1936 – 2016)

“A sociologist, Robert A. Scott, wrote a book with the title, The Making of Blind Men, where he showed how people with disabilities, like no other group in society, are in the hands of experts, of doctors, nurses, social workers, teachers and also by their family and relatives … When awareness grew about this phenomenon, of course we ourselves said that we must catch more influence, we must build capacity to take our own destinies into our hands, and you can see in many of the international documents, a trend to emphasize more and more, the role of disabled people themselves in deciding on their own lives and what should be priorities, and what should be done in the disability field… so the voice of people with disabilities is the most important voice in creating initiatives and action to improve the living conditions of people with disabilities.” – Bengt Lindqvist, 2011

Bengt Lindqvist seatedI write in sorrow about my co-director, my colleague and my friend. On December 3, 2016, the 24th United Nations International Day of Persons with Disabilities, we marked the death of Disability Rights Promotion International’s (DRPI) inspiration and co-founder Mr. Bengt Lindqvist.

Bengt had a singular influence on disability of the 20th and well into the 21st century. His contribution is profound. Not because he had a disability but because he understood social justice in a way that he was able to put it in practice in all the many different lives he had – as a teacher, as a politician, an as an advocate, as a UN Special Rapporteur on Disaiblity, as a father, as a husband, and as a jazz musician. He recognized so clearly and unfailingly that the voices of people with disabilities were the voices we needed to hear and what was said by those voices had to be the only agenda in addressing the denial of rights, and exclusion. He never bent in his resolve to make those voices heard.

His influence is legendary and recognized by both the famous and the average person who he met on his journey. He had an impact on every person he met.

By profession, Mr. Lindqvist trained and practiced as a language teacher. His interest in equality and disability led him to advocate and work on issues of disability policy in the 1960s. In 1982, his passions for politics led to him becoming a Member in Parliament in Sweden, serving as the Minister of Social Service and Family Affairs between 1985 and 1991.

Bengt Lindqvist standing at a podium
Photo Credit York University 2013

Between 1994 and 2003 Mr. Lindqvist served as the United Nations Special Rapporteur on Disability, where he led the implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities, the framework that promoted participation and equality for people with disabilities. Before anyone was thinking of monitoring and the CRPD was not even yet on the political agenda, Bengt held a conference in Almosa, Sweden, in which the 28 participants, including representatives of all the international disability organizations as well as the UN, heralded jurists and others detailed a way to monitor the rights of persons with disabilities. It stands to this day as the model for participatory, holistic monitoring rights – through the voices of persons with disabilities. And the oak tree he planted at that meeting as a symbol for the work that was beginning still grows in the gardens of Almosa getting stronger and bigger each year. Bengt said it was the symbol of what we could achieve and it is. In partnership with me, he co-founded, after that meeting, Disability Rights Promotion International (DRPI), in 2003 in an effort to design a methodology for participatory disability rights monitoring internationally. Bengt has provided dedicated leadership as Co-Director of DRPI in the process of mapping the monitoring of the rights of people with disabilities internationally. His wisdom and knowledge and strength shine through that as they are found in all his struggles for justice.

Bengt Lindqvist’s achievements have been recognized by many communities internationally, including receiving honorary doctorates from York University (2013), Stockholm University (1999), and Lund University (2002).

I celebrate the life of an inspirational leader, an advocate, a teacher, a powerful international voice in the disability community and beyond, and most importantly I celebrate and say goodbye to a loyal friend and a dear colleague, Mr. Bengt Lindqvist. Together we can honour his memory by working determinedly to gain the justice he so believed in and to hear the voices of those with disabilities.

Marcia H. Rioux, C.M., PhD
Distinguished Research Professor
York University
Co-Director, Disability Rights Promotion International


Tributes from Friends and Colleagues

“The world lost a strong leader and advocate for disability rights and social justice. Truly an honour to have been in his presence.” – Paula Hearn, Project Coordinator – DRPI (Toronto, Canada)

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“What a great loss for us all – I feel very sad. Yet I know his memory will continue to inspire us and strengthen our struggles for a better and more just world. His kindness and wisdom always impressed me and taught me so much. I’ll miss him.”   – Paula Pinto, ISCSP, University of Lisbon (Lisbon, Portugal)

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“Bengt Linqvist was a diplomat, an advocate for disabilities, a minister, a politician, and a researcher who believed in social justice.  I met him originally through DRPI.  He has been a role model ever since.  One should not forget he also was a talented drummer and a lover of music.  I remember going with him to a small bar in New York City.  No one knew we were coming.  When we were seated the entire band shifted so that they were playing directly to him.  It was a small tribute to a great man —but sincerely meant. I do not think that there can be a greater tribute than that we follow in his footsteps.”   – Ezra Zubrow, Professor of Anthropology at University at Buffalo (Toronto, Canada)

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“Since my first contact with DRPI, I was honored to become part of one of the most advanced disability rights monitoring movements in the world. Mr Lindgvist’s contribution and influence on the global, regional and local disability rights movements cannot even be measured! I am proud that I have had an opportunity to cooperate with Bengt. You will never be forgotten! May your soul rest in peace.” – Zoltán Mihók (Kanjiža, Vojvodina, Serbia)

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“What a  terrible loss to the community and to DRPI in particular. We are proud to have been associated with him and pray for his soul and strength to his family to tide over the grief.” – Rajive Raturi, DRPI (India)

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“I also have fond memories of Bengt, all the way back when he was the Special Rapporteur and Disabled Peoples’ International (where I worked) promoted the UN Standard Rules as the avenue for securing the rights of people with disabilities. Bengt would have been so impressed by our celebration of the International Day of Persons with Disabilities, December 3 at the Canadian Museum of Human Rights: Manitobans with a variety of disabilities from all walks of life told personal stories about how an Article of the CRPD reflects their life stories and/or their priorities. Bengt played an important role moving those personal stories into the political realm, here at home and around the world. In all sincerity, it is an honor for me to have worked with people like Bengt, and yourselves, who share an enormous legacy. With sincere condolences, – Yutta Fricke, Executive Director – Disabilities Issues Office, Province of Manitoba (Winnipeg, Canada)

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“I was shocked to get the information of Bengt Lindqvist passed away. I want to send my heartfelt condolences to his family and colleagues. He made a great achievement in progressing the human rights of PWDs. I worked long years with him at UN meetings, especially the CRPD. He had a great power to unite the voice of the PWD group and each government. We lost a big leader today. Thank you for your leadership for us.” – Shoji Nakanishi, Chair – DPI Asia Pacific

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“Our deepest condolences to the family of our dear Bengt Lindqvist. He may be gone physically but his contribution to the disability movement will always be remembered.” – Philippine Coalition on the UN CRPD & the Philippine Partnership on Children with Disabilities

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“Such a great loss. May his soul rest in peace in heaven and may his family have the strength to bear this loss. His contributions will always remain an asset.” – Bishal Dahal, Nepal Work Placement Coordinator DRPI-AWARE Project (Kathmandu, Nepal)

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“Very sad news. Let his soul rest in peace. We will keep his words and keep fighting for Rights of Persons with disabilities. Thanks for the unmeasurable work he did for the disability movement worldwide.” Celestin Nzeyimana, DRPI (Rwanda)

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“I first met Bengt Lindqvist at the 1980 Rehabilitation International Congress Winnipeg, where the Disabled Peoples’ International was conceived. Firm and polite, he was a principled statesman and a courageous warrior on the path to establishing full rights for persons with disabilities. I remember a story told of how he responded to the rehabilitation industries’ assertion of a parental role toward persons with disabilities, saying that the parental role eventually and properly had to respect each of their children as adults. Bengt Lindqvist was always a leader, easy to respect and readily a good friend.” – Jim Derksen (Canada)

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“This is my real sadness that Bengt Lindqvist is no more with us. I met him twice in my life. I learnt first from him when I talked with him in 2006 and he was saying that disability is a human rights Issue. This is my first learning about human rights of PWDs. He took forward the disability issue around the world. I will really miss him.” – Ishaque Mia (Bangladesh)

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“It is with great shock and sadness that I learn of the great loss of a truly magnificent man and important leader who worked to promote disabled people’s human rights in the world, Mr. Bengt Lindqvist. It is a major loss to us and the movement throughout the world. At the same time, to all his family go our condolences on their great loss.

I hope that, over time it will be of consolation for us that Mr. Bengt was a great world leader of disabled people who at all times thought about the people that he was advocating for and representing rather than himself. He has ensured that disabled people are recognized and that they are able to enjoy human rights throughout the world.  He contributed in no small way to the world’s disabled people movement and that will be one of the testaments to his leadership.

Again, my sympathy to his family, we will definitely miss him and will never replace his leadership in the world. Bengt, we love you and will never forgot you.” – Abdus Sattar Dulal, Founder & Executive Director of Bangladesh Protibandhi Kallyan Somity (BPKS) (Bangladesh)

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“Bengt Lindqvist’s passing is a deep loss to all who have admired him. My most profound condolences are extended to his family. An entire generation has a better life because of his work, and many more will understand dignity and fulfillment for decades ahead because of his contribution to human rights and the disability rights movement. His kindness, and eloquent articulation of an inclusive world that is clearly the stuff of practical need, but all too often still placed in dreams, created a legacy of inspiration that will be the tool for our continued collective work to achieve equality for all.” – David Shannon, C. M., O. Ont., LLM, Barrister-and-Solicitor (Ontario, Canada)

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“Condolences to all who knew and loved him. I remember Bengt as a good, smart and kind man who made space for the diverse groupings of persons with disabilities and was open to new ideas.  As the first Special Rapporteur on Disability he proposed a supplement to the Standard Rules that was the first draft international document to prohibit unwanted interventions against persons with disabilities. He also, from what I learned from predecessors in WNUSP, was responsible for bringing WNUSP into the Panel of Experts which then also gave rise to IDA.” – Tina Minkowitz, Esq., Center for the Human Rights of Users and Survivors of Psychiatry (New York, USA)

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“My deepest condolences to Bengt’s family and friends during this difficult time. Such a great loss to the community. I’ve read about his work in histories of the movement and I think we are living many of the results of his labour, especially with Canada’s decision to consider signing the Optional Protocol this week. Sending you my best.” – Natalie (Ottawa, Ontario, Canada)

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“Please accept my condolence for the tragic death of such a great person. I offer my deepest condolence with praying to PASHUPATINATH  for his soul rest in peace. Best Regards.”   – Arabinda Subedi (Nepal)

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“I offer my sincere condolences on the death of this illustrious character, Bengt Lindqvist, who has done much to promote the rights of disabled people in the world.”   – Seberege Pierre-Claver – Sociologist Consultant, Specialist in human rights in general and disability rights in particular (Burundi)

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“It is with great sadness that I hear of the death of Bengt Lindqvist who was a founder of Disabled Peoples’ International. Bengt was one of the original people who were active in organising the original breakaway group from the RI conference in Winnipeg 1980 and went on to organise the first DPI world assembly held in Singapore in 1981. He then went on to serve on both the World Council and office bearers up until 1985. He was originally a minister in the Swedish government and brought with him significant skills to ensure that the voice of DPI had a significant impact at the world level with not only the United Nations but also governments. He organised significant funding for the first DPI Secretariat which was located in Sweden up until 1986. To honour Bengt’s and the work of Henry Enns and Ron Chandran-Dudley, previous DPI leaders who were his comrades in the revolution to change the world, we must continue to fight tooth and nail for the equality and human rights of all people with disabilities around the world.” – Frank Hall-Bentick AM (Australia)

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“I am very sorry to read of the death of your colleague and friend Bengt Lindqvist. He was a great speaker the one time I heard him in your class in fall 2004. His work lives on in many ways, not least in DRPI. My sympathies.” – Geoffrey Reaume, Associate Professor – York University, Graduate Program in Critical Disability Studies. (Toronto, Canada)

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“I think though he has passed he has had a large footprint in the lives of others. He is not far away from us and still exists between us and everyone who knew him will never forget. I do not think we’re going to forget God’s mercy upon the Lord to protect him and keep his work as a shadow between us.” – Ms. Asia A.M. Yaghi,President – I am a Human Society for Rights of Persons With Disability (Jordan)

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“In Japan, I have initiated two opportunities to pay our respects to Bengt Lindqvist. One was the inaugural academic meeting of Japan Association for Disability Law, 10 December 2016 at Kanagawa University in Yokohama. It was a fitting occasion as Bengt was the one who proposed the original CRPD in 1989 at the UN General Assembly, after Prof. Maria Rita Saulle of Italy in 1987. The CRPD of course is one of the major research topics for this new Association, of which I am a board member.

A group look at a projected photo of Bengt LindqvistAnother was the Disability Policy Seminar organized by DPI Japan on 11 December 2016 in Tokyo. In Japan, we finally implemented the Act on the Elimination of Discrimination against Persons with Disabilities this year and we are keenly aware that we owe much to Bengt. The Act was enacted as part of Japan’s harmonization efforts with the CRPD.

I first met Bengt in Vienna in 1992 during the Standard Rules on the Equalization of Opportunities for Persons with Disabilities process, which was the result of the Swedish proposal of 1989. I was with the Disabled Persons Unit of the UN Secretariat and had the honor of working with Bengt. Bengt served as the inaugural Special Rapporteur for the three terms until 2002 during which the International Disability Alliance (IDA) was established from the Standard Rules process.

In addition to being a global human rights leader with distinguished and outstanding achievements, Bengt remains as a kind gentleman, who was enjoying life very much. Our last meeting was in New York when we went to Blue Note during the CRPD negotiations. I am very sure now he is enjoying himself as a musician. My heart is with his family and friends around the world.” – Nagase Osamu, Eminent Professor – Center for Ars Vivendi, Ritsumeikan University, Kyoto (Japan)

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“Wishing you all the best, I want you to know that I think on you and regret very much the loss our your and our friend. Please, receive my condolences on the loss of Bengt Lindqvist.” – Sonja Vasic – Independent Disability Consultant (Serbia)

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“Dear Friends, It was with deep sadness that we learnt of the death of Bengt Lindqvist. We extend our condolences to his family and friends.” – Kudakwashe Dube, CEO – Africa Disability Alliance (ADA) (formerly Secretariat of the African Decade of Persons with Disabilities) (Pretoria, South Africa)

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“I first met Bengt in 2000 in New York when working on a project for the UN OHCHR with Theresia Degener. He was always unfailingly polite as well as extremely helpful. I had known of his work from afar but was totally taken by his humanity when I first met him. He was, I believe, part of the team that put forward a Swedish draft treaty as early as 1987. Italy also put forward a draft in the 1980s (drafted, I believe, by Maria Rita Saulle who is also sadly no longer with us). Bengt emerged (to be expected) as a strong backer for the drafting of the UN CRPD. Lately I connected with him on the drafting of the long mooted treaty on the rights of older people. I adored his mix of wisdom, wit and experience. In Bengt we have lost a true giant and indeed a true gentleman.” – Gerard Quinn. (Ireland)

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“I am saddened to hear about his death. May his soul rest in the internal Peace. He made some of us grow in the struggle for disability rights and development that we are still championing today through some of the international instruments/agendas such as UNCRPD and SDGs. We continue with our disability and development struggle to come up with a disability and development narrative that will make the world understand the meaning of leaving behind no one.” – Phillimon Simwaba -The Disability, HIV and AIDS Trust (Zimbabwe)

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“It was with deep sadness that we learnt of the death of Bengt Lindqvist. We extend our condolences to his family and friends.” – Mr. Kudakwashe Dube, CEO – Africa Disability Alliance (South Africa)

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“So very sorry to hear of this. I remember Bengt being a wonderfully calming influence in those tenuous early days of the treaty negotiations. He will indeed be missed. With best wishes to all.” Katherine Guernsey. Senior Policy Advisor to the Special Advisor for International Disability Rights (United States)

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“Thank you for letting CCD know. Bengt was an important leader in DPI and elsewhere.” April D’Aubin – Council of Canadians with Disabilities (Canada)

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“I was filled with dismay when I learned that Bengt Lindqvist passed away on December 3, 2016. He was one of the most effective and successful fighters for the rights of persons with disabilities at global, European and national level. I met him several times when he was the UN Special Rapporteur on Disability. He is called the “father” of the 1993 UN – Standard Rules on the Equalisation of Opportunities for Persons with Disabilities and his impressive speeches opened many doors at UN – level and attracted many States delegates to follow his claim to reform national disability laws based on the principles of normalisation and equal opportunities for all.

Today the Standard Rules are sometimes characterized as outdated due to the fact that the Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the UN General Assembly in 2006. But the Standard Rules are a historic milestone developed at times when many UN –States Parties still took the view that persons with disability primarily suffer under medical deficits. Up to the end of the 20th century disability was seen as a matter of charity and not as a matter of human rights. Bengt wanted to change that. Careful reading of the text of the Standard Rules reveals that he on the one hand had to compromise with the ad – hoc open – ended working group of government experts founded by the UN who, for instance, defended the necessity of special education and small units of sheltered employment for persons with cognitive impairments and high needs. But, on the other hand, the text of the Standard Rules already contains very progressive statements which were picked up, reflected and developed further in 2004 when the first text of the CRPD was drafted. To quote one example: Para. 19 of the Standard Rules reads that the terms “handicap” an “disability” were very often used in an unclear and confusing way: “The terminology reflected a medical and diagnostic approach which ignored the imperfections and deficiencies of the surrounding society.” This sentence already contains the basic idea of para. e of the CRPD Preamble which states that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers.” For Bengt the Standard Rules were an important interim step. From the beginning of his activities he fought for “full citizenship” of all persons with disabilities irrespective of the kind of disability and when I took part in a legal seminar organized by him in Stockholm in 1995 he taught us already that disability is a matter of human rights and that we never should give up working to claim equal human rights for all persons with disabilities.

I owe him a lot and I liked his humour. I had the privilege to spend some nice meetings and evenings with him together with Victor Wahlström, Stockholm, one of his best friends and past president of the International League of Societies for Persons with Mental Handicap (today Inclusion International). May he rest in peace!” – Klaus Lachwitz,  President – Inclusion International, London, UK (Marburg, Germany)

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“Hearing about your loss has deeply saddened us. I personally met Bengt only once a long time ago, but I know through many of his actions and statements that he was one of the most inspirational, dynamic and charismatic leaders of the European Disability Movement and fighting for social justice and human rights of persons with disabilities. He accepted nothing less than true equality and inclusion for all. He was always ready to challenge authority for what he believed were infringements of disabled people’s rights. It is such particular coincidence that he left us on the 3rd of December, the international day for disabled people. He will be truly missed in our movement, but his legacy will stay with us forever. Our heartfelt sympathy goes out to your organization, his friends and his family.” Gordana Rajkov, Director for Political Development and Planning – Center for Independent Living Serbia (Serbia)

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“Bengt is one of these persons that really made a difference, sharp in analyzing policies and situations, inspiring when discussing actions …again the movement lost a key person. The best way to value his work is continuing the international cooperation aiming at a more inclusive society. Best regards.” – Luk Zelderloo, Secretary General – EASPD / Board member Social Services Europe (Brussels)

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“Bengt Lindqvist made significant and lasting contributions to the rights of persons with disabilities.  He was an accessible leader and diplomat, and did not need to be the center of attention to advance the global disability agenda.  He was genuine and generous. I met with Bengt several times during his tenure as UN Special Rapporteur.  Perhaps the most memorable was on his own turf, in Sigtuna, Sweden.   On behalf of the International Foundation for Election Systems and the  Institute on Democracy and Electoral Assistance, with SIDA funding, I facilitated a global conference on the enfranchisement of people with disabilities. Bengt was an active participant in the conference, which included representatives of disabled persons organizations, election agencies, parliaments, and election experts from dozens of countries, north and south.  Bengt’s presence lent legitimacy and urgency to the event. These contributions of leaders in disability rights — this rich history — too often goes unreported. Rest in peace, Bengt. You made a difference to many millions.” – Jerry Mindes (United States)