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Scandinavian Reports

Visiting  STIL

STIL, short for the Founders of Independent Living in Sweden, was first founded in 1984, by and with people with disabilities. STIL is currently a service provider for personal assistants but also a political force on championing everyone’s ability to live an accessible life. Professor Chin and I enjoyed speaking with Emma Astrand and Jonas Franksson. Astrand serves as a project manager of international relations, communications, and education. Franksson is the chairman of STIL and has been since 2019. He initially joined the board in 2009. They were both kind enough to deliver the general history of the Independent Living Movement’s roots and STIL’s foundation. 

In 1967, the founder of STIL was a college student at the University of California at Los Angeles. Intrigued by the Independent Living Movement in California and having a scholarship for a personal assistant himself, Dr. Adolf Ratzka began to train and employ personal assistants. When moving to Sweden in 1973 to complete his dissertation, he experienced a huge change in his quality of life. This came especially severe with the housing crisis in the 70s. In response, in 1983, Ratzka organized a seminar to introduce the Independent Living Approach to Sweden. With interest from other personal assistance users, STIL was founded in 1984. However, this was not enough for resistant government support. In 1986, they showed politicians how monkeys in the zoo were treated better than those without personal assistants. In the 90’s a disability investigation was conducted to see how people were living: the result was that they were isolated, without choice, dependent, and hospital-living. As a result, the Minister promised loans in 1993 for personal assistants.  

STIL is now the organization in charge of scheduling who, where, and the quality of the personal assistants’ work. Despite this progress, Astrand and Franksson illustrated how Sweden is currently on the downward end of progress. The problem with the status quo is that the state and local municipalities are sharing responsibilities but also fighting for who should be in charge. This also comes in addition to needing to fight against the medical model and the diagnosis of a doctor being the basis of what a disabled person is allowed. This calculative system for qualifying for personal assistants has made it much more difficult for people to receive personal assistants in the status quo as a result of increasing populations. In addition, this ignores the goal to thrive for a person to be as healthy or not disabled as possible. A large part of the cut on personal assistant access or hours is what Franksson attributes to resistance from the finance department. The number of personal assistants is looking to be cut from 20,000 to 16,000, making it especially difficult for young people to get personal assistants.  

STIL’s specific stance is that the state should take over the distribution and funding of personal assistants as they would provide easier access and a more equal distribution. In addition, local municipalities do yearly investigations to reassess a person’s need for personal assistants. However, as it stands, there is no trust in authorities in the state program having established a new system that makes it even harder to get access to personal assistants. In the fight between local municipalities and the state, STIL has been integral in doing lobbying to change policies. For STIL, it is as fundamental as personal assistants being a question of whether or not they have access to basic human rights.  

Franksson especially notes that 30 years ago, the state of accessibility and quality of life for the disabled was much higher than it has been 15 years onwards. In fact, Franksson says that Sweden is not even in the top of Europe for accessibility. He described his trip to Florida as like being in heaven compared to conditions in Sweden. The problem is that the government seems to only have the capacity to prioritize the needs of one minority at a time (LGBTQ+, disabled, immigrants). As a result, they often fight against each other for funding and representation in media and politics.  

In response to questions of STIL’s role in advancing assistive technology, Astrand states that such tech to replace personal assistants simply does not exist and they need to pick one fight in order to be heard in politics. As the technology does not exist presently, it makes more sense for STIL to fight for the immediate right to personal assistants. Tech has been implemented for specific tasks but not as a way to completely replace personal assistants.  

Astrand also notes the amount of discrimination in the workplace. STIL also argues that the right to labor is a part of the right to life. This combats the stance of the government that requires additional hours of personal assistance. STIL advocates that they need personal assistants to live not just to survive. As it stands, Astrand states that it’s harder to not have a home or food than to have access to a personal assistant. The strong welfare systems are there to help while the government does not extend the same level of effort towards support as with the disabled.  

Looking forward, STIL believes that strong activism and representation are what is needed for change. Given that Sweden is not like the US and suing someone in court isn’t the solution, Franksson believes that it is key to get on the ground and talk with politicians

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Scandinavian Reports

Visiting Nordregio

Visiting Nordregio, Interview with Eva Franzen and Nicola Wendt-Lucas on May 31, 2023

Nordregio is a leading Nordic research institute in the fields of regional development, policy, and planning. They are an official entity of Eurostat, the Statistical Office of the European Union; though, it was initially founded by the Nordic Counsel. Within which, it is a part of a network of organizations that also work together. I had the pleasure of speaking with Eva Franzen and Nicola Wendt-Lucas. Franzen is a social scientist with a master’s and Ph.D. Their official title is senior researcher for Nordregio. Their main projects have been focused on climate change and 5G accessibility within the Nordic region in pursuit of a digitally connected region. Wendt-Lucas is a research fellow with Nordregio and also has a Ph.D. Wendt-Lucas’s focus of study has been international relations. They have also led projects on digitalization and how digital inclusion differs in the public versus private sector. They also focus on healthcare solutions and evaluating the economic consequences of such.

Franzen mentioned the idea of Nordic added value and how they had done a research project on the essence of why the Nordic region is such a special region for innovation and accessibility. It stems from their visionary nature and how they see themselves as the most accessible and sustainable region in the world. The push for this goal is what Wendt-Lucas says differentiates themselves from other countries and regions as they focus on open collaboration towards a goal. To that end, Nordic added value was the topic they researched on how the collaborative culture of the Nordic region was more successful and beneficial to that of comparable other regions.

Given that Nordregio has a parent organization of the Nordic Counsel of Ministers, many of their specific needs and interests are determined by the Counsel’s goals. These are outlined in a mission statement that details the objectives of the Counsel for the next 5 years. This ultimately is what shapes Nordregio’s development as well as pan-European efforts. The name of this mission statement is the Nordic Vision 2030.

There are two main sources through which organizations such as Nordregio are funded. The first is a larger-scale research project funded by the Counsel or EU. These grants require an application process and might involve working with other organizations and collaborating on the research as dictated by the results of the application. The second is smaller projects that are funded nationally by area of influence.

One project that Franzen and Wednt-Lucas introduced to me was their digital inclusion project which dates to just over a year ago. They began with policy overviews of the Nordic and Baltic region to understand what the political state of the issue was, whether it be providing access or a lack thereof. This also helped them base a common understanding of what should be achieved. This involved mapping what areas have social organizations and what they might offer. They also included notes on where policy is aging or there is need without social orgs stepping up to help. To find this data, they used Desi-index European monitoring scheme which is published every year and the EU. They were looking for key factors or missing indicators that might’ve been left out and potentially bring those to light.

Each project is typically assigned 1 project manager and a deputy and team is assembled based on the project size. Overall, Nordregio employs roughly 50 people. Typically, people are working on more than one project at a time. For example, the digitalization project had 15 people work on it at different stages of the process.

Nordregio was initially referenced to us by the Nordic Welfare Center, who were unfortunately too busy to meet. The difference in their organization is that NWC focuses more on welfare issues and social health as well as only receiving Nordic Counsel funding.

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Scandinavian Reports

Visiting Norwegian National Centre for Ageing and Health 

The Norwegian National Centre for Ageing and Health was a project developed in 2016 by the Oslo Hospital. Their primary services involve providing translators and interpreters to doctors and medical professionals during consultations with patients. In total, they have 350 total language interpreters in 80 different languages. This past year they conducted and assisted in over 45,000 consultations. The particular hospitals they help are the Oslo University Hospital, Synosse hospital, and other rehabilitation hospitals in Oslo. In 2018, the project became an official part of the Oslo University Hospital as a department.

The department has two main departments within which its staff are split. The first is actually educating and verifying the ability of the interpreters when interacting with doctors/nurses. The need for this organization initially stemmed from the lack of interpreters that kept patients from getting the necessary health care to which they are entitled by law. Even afterward, translators came from private organizations under which there was no standard and led to underqualified translating. To that end, the government was useful in securing educational opportunities for those seeking a career in translation. The Oslo Metropolitan (MET) University introduced a Bachelor’s Degree in translation for those to learn how to become a translator with associated language classes. Ninety-eight percent of the translators at the Norwegian National Centre for Ageing and Health have this degree. The only exception accounts for a language that is not taught at the Oslo MET.

On March 22nd, I had the opportunity to speak with Kjersti Olsen, who works as a managing director in the second half of the department that works in managing the interpreter’s schedule and handling the financial side of the organization. In addition to detailing the history of the organization’s work and governmental funding to me, I learned that her work primarily surrounded receiving doctor requests for translators and scheduling up to two months in advance translators schedules. When asking Olsen if there was a general trend in the types of people who requested translators, Olsen stated that it often followed political history and correlations with age. For example, with recent events, there has been a rise in requests from female patients in both Ukrainian and Russian. Urdic is also a commonly requested language from the elderly population who visit the hospital. The rarity of Urdu in younger populations comes from the fact that they have likely learned Norwegian as they grow up. According to Olsen, the most common language requests they get are Arabic, Somali, Urdu, and Russian.

The Norwegian National Centre for Ageing and Health office is located in a separate building on the same site as the Oslo University Hospital. If wishing to visit from the south end of Oslo, I would recommend taking the Ruter 31 Bus line from the Jernbanetorget station for 7 stops until you reach Aker sykehus. From there, it’s only a two-minute walk. The office space is located on the 5th floor of the building.

The area of the office’s operations was quite interesting. It quite literally looked like a hospital ward and it leads me to wonder if the building had previously been used as a part of the hospital. The corridor within which many of the office spaces in which each employee of the Norwegian National Centre for Ageing and Health resided looked like a hospital room. I think Olsen had a lot to provide and additional interviewing of this organization is not necessary.

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Scandinavian Reports

Visiting the Norwegian Social Research Institute (NOVA) 

Visiting the Norwegian Social Research Institute (NOVA) 
May 24, 2023 

Interview with Jimmy De Lara Anderson 
Website: https://www.oslomet.no/en/about/nova 


 

The Norwegian Social Research Institute (NOVA) is a department at the Oslo Metropolitan University that is dedicated to doing research on growing up, quality of life, welfare services and policy as well as aging and life courses. They initially began as a private operation and then became a department within the Oslo MET in 2014. As described by Senior Consultant Jimmy De Lara Anderson, the organization researches the challenges that humankind faces from cradle to grave. The department is made up of professors, research scientists, informants, and undergraduate students. They concurrently conduct hundreds of projects on welfare and accessibility at once. 

The way their process works is that often they receive a request from the government to research a specific topic or issue. The government allocates a certain budget or compensation for the group to look into a specific issue for a certain amount of time. Oftentimes, NOVA competes with other research institutions for these grants as well. The Norwegian government requests these reports as they need evidence to justify the creation of specific policies or budgets. It allows them to have an understanding of current society as well as be aware of future expectations and take relevant precautions. Anderson describes it as informing the government on what is the best sacrifice to make.  

Anderson describes the attribution to NOVA’s success to be in part due to its funding from the University and Norwegian government, but also just the culture of the Norwegian people. He says that the Scandinavian welfare model is what he imagines other parts of the world are striving to model themselves toward; the mindset that everyone feels that they need to chip in. He says that the expectation is that the wealthiest are those that contribute the most and even those who have less to give feel a sense of duty. An example he sites is the difference in basic things like healthcare that are practically free in Norway. 

As a Senior Consultant, Anderson describes his job as ultimately to make sure that everything runs smoothly so that the researchers can focus on research. There are two main sections within NOVA: those actively researching and those working administratively. Administration includes human resources, finance, controllers, and key advisors on specific EU projects. I found Anderson’s office on the second floor of one of the buildings on the Oslo MET campus. The architecture and interior design clearly portray a research-oriented environment. The people there were friendly and very helpful in aiding me to find my destination. The building was bustling with students going up and down the stairs (an interesting anecdote is that almost no one used the elevator in this 7-floor building). NOVA occupied both the second and third floors of this building. Coming from the south side of Oslo, the campus can be reached by taking the Ruter 19 Tram Line.  

Anderson’s experience as a resident of Denmark who had moved to Norway was quite interesting. He cites that Danish people are often more open and willing to help while the Norwegians mind their own business. Maybe this is part of the reason why Anderson opened his office doors to me. Nonetheless, Andersen was able to appreciate the Scandinavian model and its evidence in both countries. It might prove fruitful to speak to someone in the research department of NOVA. 

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