Interview with Tomas Lagerwall of Sweden, New RI Secretary General
 Recently Tomas Lagerwall was appointed the seventh Secretary General of Rehabilitation International and Kathy Martinez, Deputy Director of the World Institute on Disability, interviewed him in person and by email.
KM: To start with, could you say something about your professional experience?
I have been active in the disability field for almost 20 years. Prior to my present employment with the Swedish Handicap Institute, I have worked for the Swedish International Development Agency (Sida) and for some Non Governmental Organisations.
KM: What have you been doing at the Swedish Handicap Institute?
At the Institute I have been involved in several projects on the international level such as seminars encouraging the use of appropriate technology and projects funded by the European Commission such as the HEART study. The HEART study (Horizontal European Activities in Rehabilitation Technology) 1992 - 1994, dealt with different aspects of assistive technology like testing and standardization, industry coherence, provision of assistive technology, training, and research and development. The HEART study resulted in about 65 reports and 130 recommendations, many of which have given concrete results. One concrete recommendation was more consumer involvement and participation in all aspects of assistive technology.
The last few years at the Institute I have also been working with planning, quality assurance and evaluations.
Appropriate Technology
KM: I know that technology has been a central part of your work for a long time. What is your "world view" regarding appropriate technology? You are one of the few people on the international level who have consistently promoted the importance of appropriate technology. Why is that?
I have had the opportunity to travel to different parts of the world where I have met many people with disabilities. They usually lived under poor circumstances, lacking even the most basic, essential material support. With assistive technology, e.g. wheelchairs, they would be able to participate in society, and gain access to training, a job or study--leading to more equal opportunities.
I am not a technician - my university degree was in public administration and social work - but I have always been interested in technical things such as trains. And I discovered early on how important technology is for many people with disabilities in countries such as the USA, Norway and the UK. People with disabilities in most parts of the world have no access to this technology. First of all it is seldom available. Secondly if it is available it is too expensive and thirdly it often doesn't work in the environment where most people in the world live. In other words: the technology is not appropriate for the people who need it. This is how the term "appropriate technology" came up.
We have tried to increase the awareness and also encouraged technology development. There are some great examples of development of appropriate technology, which I would like to mention. One is local production of wheelchairs where Ralf Hotchkiss at San Francisco State University has been one of the champions. Over the last 20 years Ralf has proved that wheelchairs of good quality can be produced in any country in the world with mainly local material and by people with disabilities and at a price that most people can afford. Another example is a group of technicians in West Africa called FATO that has developed a knee joint for local production with support from the French organization Handicap International and Swedish Sida.
Assistive Technology
KM: You have been working to improve access to technology for people with disabilities as part of an everyday approach to life, e.g. through CBR. Why do you see that as important?
Without assistive technology many people with disabilities would not be able to participate in such fundamental aspects of life as going to school, meeting friends and having a job. That should not be a privilege for some but rather everybody's right.
Assistive technology is not just a product or a gadget. It is the right device adjusted according to a particular person's need. And it often becomes an integral part of that person's life.
Selecting assistive technology is often a part of the rehabilitation process, but doesn't end there. The person with a disability will in most cases use such devices for the rest of her life.
CBR
KM: You are also known as an advocate for Community-Based Rehabilitation (CBR). Why do you believe in CBR and can you try to explain what it means?
CBR is not just a method to provide service to people with disabilities. It is a concept for empowering the person, the family and often also the community. By using local resources and building on local people and abilities, e.g. for local production of assistive technology, it gives power to the community.
Studies have shown that more than 60% of rehabilitation can take place at the community level by people without formal training. Family members, neighbors and people with disabilities themselves can provide necessary training and service. Professionals are primarily needed for training and support to the local community and for referral services.
CBR programs have been described by some as second class or second-hand rehabilitation for developing countries. This is to my view totally wrong. A CBR program that is working well can add substantial value compared to traditional rehabilitation. The mother of a boy with a developmental disability who participated in a CBR program in Sweden once said: "Before the program started we were seen as a disabled family. Professionals came and told us what to do and our home became like a small clinic.
"Now we have the power. We ask the professionals to come when we need them and to help us solve what we consider to be important. And we have built up a network with other families and act together with them for the rights of our children."
Development Projects
KM: I understand that you were hired to evaluate development projects in Latin America. Could you tell us the results?
My first visit to Latin America was in 1971 when I worked in Colombia for a Swedish NGO, as a social worker in a rural development program. In 1983 I worked at the Swedish Embassy in Managua as First Secretary dealing mainly with development cooperation programs.
During both assigments disability issues were included. In Nicaragua I evaluated an Early Detection and Intervention Program supported by UNICEF and where RI (through Susan Hammerman) had been a consultant. I met several children who had received successful habilitation to overcome the disabilities they had received as a consequence of the war in that country. Most children had cognitive disabilities, autism, speech disabilities or what in CBR terminology is called "strange behavior."
In 1998 I participated in an evaluation of a rehabilitation program of the Nicaraguan Ministry of Health that had received support from the Finnish government. We found that staff had received training and equipment had been purchased and was used. Unfortunately the effect on people with disabilities was limited and involvement of disability groups was minimal. Like many other projects, this project started with good intentions and committed staff. I am sure it would have had better results if the target group - people with disabilities - had been more involved.
European Collaboration
KM: What do you think the current European collaboration regarding disability matters is achieving?
In the past disability concerns within the European Union have mainly been concentrated on two areas: labor market issues and research and development, in particular in the Information and Communication Technology (ICT) field. The TIDE program and perhaps in particular the HEART study and the HELIOS program are examples of activities funded by the European Union that have had substantial impact. The European Commission has also given support to the Web Access Initiative (WAI) guidelines.
The Amsterdam Treaty of 1997 opened the way for an antidiscrimination approach of the European Union. I hope that the expert meeting that took place in Linkoping in Sweden at the end of April this year, entitled "Towards a Barrier Free Europe for Citizens with Disabilities" will be the starting point for a more human rights based approach of disability work by the European Union.
The European Union consists of 15 countries and has a substantial political power with altogether 380 million inhabitants. Some people wish to see a United States of Europe, while others prefer a Union with more independent member states.
The Council of Europe consists of 43 countries cooperating in a somewhat looser connection, covering about 800 million inhabitants. The European Council has emphasized the Human Rights perspective and has taken important initiatives in the disability field.
One important European actor is the European Disability Forum (EDF) where disability organizations in countries within the Union can act together for a Europe where people with disabilities have equal rights as other citizens. RI is one of the partners in EDF through RIECA.
Advocacy & International Experience
KM: Have you consciously encouraged people with disabilities to take strong roles in the projects that you've worked on and the organizations you've been involved in?
It is for me essential that the people concerned - people with disabilities - should be involved in programs for them at all levels. In the projects funded by the European Commission where I have been involved there has always been a consumer board, with representatives from the disability movement. I have also emphasized this issue in the projects I have evaluated.
KM: How many languages do you speak?
In addition to my mother tongue Swedish I speak English, Spanish, Portuguese, and some French and can make myself understood in German.
KM: I understand that you have visited many countries, but you have also lived in some countries besides Sweden?
Yes, I lived in Colombia in South America in the early 1970s and have also lived in Guinea-Bissau in West Africa and in Nicaragua in Central America for a couple of months.
I found it very interesting and a privilege to live in those countries long enough to experience their culture and daily living conditions. It is most different from being there for a couple of days.
I have met with and come to know people who live in poverty and have to fight every day for their bread and people who have experienced war and violence. Many had some kind of disability. What struck me was the human ability to survive and the supports that often exist within the community.
Visions for RI
KM: Describe some of your visions for RI.
First of all I would like to express how privileged I feel to be able to serve Rehabilitation International and the international disability community.
I see RI as the global network or partnership of and for people with disabilities. RI has the advantage of having important people from research, service providers, disability activist groups and professionals in its network as an organization of and for people with disabilities.
In my opinion there have been substantial global achievements in two issues during the last decades: gender and environment. My vision is that the recognition of rights of people with disabilities would be as successful as these two fields. That is not an easy task and with risks for setbacks.
RI can of course not achieve this alone. The RI Charter for the new Millennium, adopted in 1999, was an important starting point. We have to work first of all with other disability organizations with UN status, such as DPI, World Blind Union, World Federation of the Deaf, The World Network of Users and Survivors of Psychiatry, and Inclusion International.
A disability rights convention could be one tool for achieving such goals. It is also important to use other existing international agreements such as the Standard Rules, the Declaration of Human Rights, the Convention on the Rights of the Child and the Salamanca agreement.
We should be aware that in actuality, it is the UN member governments that will decide whether or not there should be a convention. We should therefore use RI's network to lobby for disability rights when possible together with other groups. I know this is of highest priority for the RI Executive Committee and for Lex Frieden as the new president. And I share this view.
Another vision is that living conditions for hundreds of millions of people with disabilities living in poor areas or countries should improve. This is a responsibility for the global community. We know through many projects and studies that there is a strong connection between poverty and disability.
RI should create awareness and stimulate concepts for empowering people with disabilities. Community-Based Rehabilitation (CBR) has proven to be a successful tool in many countries. The concept could be used in many more areas and could also be further developed. RI has a great potential and thereby responsibility.
Leisure Time
KM: Switching gears, how do you like to spend your time when not working?
I like to be in the countryside, walking around watching birds and other animals, enjoying the environment. One of my favorite places is a small red-painted Swedish cottage with white-frame windows and an open fireplace. I go there to relax and to be reminded that is how many people lived not too long ago.
KM: Please tell us something about your family and what they are doing.
I have two grown-up sons. Hector Roland, 27, is an anthropologist and has spent some years in Colombia in Latin America where his mother comes from. Mikael, 23, is now studying economics in Barcelona, Spain. Last term he spent some months in Australia, studying at a university in Sydney, and also visited New Zealand. In August he will continue his studies at Linkoping University in Sweden.
My wife, Margaretha, has worked at a museum for Chinese, Japanese and Korean art in Stockholm and is hoping to get involved with some of the many interesting museums in New York City. Margaretha's sister lives there and they are looking forward to spending time together.
KM: What are your feelings about moving from Sweden to New York City, especially since there is not a lot of open countryside nearby?
I think it will be very exciting and look forward to walking around, and discovering New York and the East Coast beyond the tourist sites. And I hope there will be some opportunities to take in concerts, opera and museums.
|
