As I mentioned in my blog last week, when I arrived in Sweden I was worried that there would be no work for me as an activist, as I had expected the situation for persons with disabilities here to be paradise. However, I quickly found that not only were there a number of problems to address in Sweden, but there were very few individuals and groups engaged in activism and civil society. One of the most iconic images of Sweden nowadays is Greta Thunberg and her Skolstrejk för klimatet. However, it is important not to overstate how common this type of activism is here.
As noted by scholars and commentators, Sweden is a “high-trust” society with a great deal of faith in government. Individual civic participation is high, as measured by voter turnout, but broader democratic engagement in decision-making through stakeholder engagement is below the OECD average. It seems that, in general, Swedes are very keen to participate in elections, but once they are completed, they trust that whoever is elected will do a good job without much engagement until the next election.
The relative lack of civil society and activism in Sweden in many ways comes from the guiding ideology of the Swedish state – statist individualism, in which the welfare state aims to free individuals from dependency on others and so liberate them from potentially problematic relationships with parents, children, and partners. A side-effect of this, as explored in the 2015 documentary “The Swedish Theory of Love”, is high rates of social alienation and loneliness.
The absence of civil society has become more apparent with the general weakening of the welfare state since the 1970s and 1980s, as few organisations have opposed trends of privatisation or stepped in to provide a social safety net. Unions are the exception to this, as membership is high in Sweden, although direct action such as strikes are rare and sympathy for strikers is limited due to the trust most Swedes have in existing collective agreements.
When I first arrived to Sweden I lived in a small village in Småland, which had very limited accessibility and public transport. The day I received my residency decision I had to go to the station at 4 in the morning - at the darkest time of year, in deep snow and a temperature of 20 C below zero – to travel to a nearby city, and present myself in person at the administration. I didn’t have an electric wheelchair at the time, but luckily I had my cousin who could push the chair. We then had to wait several hours outside in the snow before the offices opened, and afterwards hurry back so that we did not miss the last connection. I imagined the situation would be better in a bigger city, although when I moved to Lund to study I found out that the university was also not particularly accessible.
In my own experiences working with disability rights in Sweden, what has shocked me more than anything, are the cases where civil society has failed to step up when state institutions fail. I worked for an organisation in Stockholm helping refugees with disability, and during this time I discovered many things that were supposed to be accessible but are not in practice. One time a refugee called us for help accessing his rights. He was living in a refugee camp and could not leave his bed independently due to his disability. Like I had that cold winter day some years earlier, he had received his residency approval, but in order to apply for an assistant and a suitable wheelchair he needed to register with the tax agency, and receive a so-called “personnummer”, the identification number that is essential for almost all aspects of life here in Sweden and crucial for claiming your rights.
To receive the number and an ID card, he had to travel to the tax agency office in a nearby city. However, neither the tax agency, nor the Migration agency that was responsible for his accommodation in the refugee camp, had any obligation to provide transportation adapted to his condition. The latter would only provide transportation for medical reasons or for meetings with their own case workers. This is a significant gap in the accessibility regulations for persons with disabilities – nobody was responsible to provide him with the specialised transportation he required.
He asked us for help, and despite us calling around the municipality, the tax agency as well as the Migration agency, nobody accepted the responsibility of providing it. Here is where civil society can be expected to step in – but the organisation I was working for had no direct solution. The man waited for two months in limbo. Finally, when he mentioned that he had a pain in his stomach, I realised that this was how I could help him as an individual. I found a medical service provider that was located right next to the tax office, and that way he got adapted transportation that took him both to the doctor and to the tax office where he could receive his personal identification number.
Even in Sweden, accessing your rights is not always easy – you need to fight. Civil society and activism are essential for this, particularly as rights for persons with disabilities are declining in Sweden, but in ways that are not immediately apparent to those who are not directly concerned. Rights to assistant hours and financial support are being constantly reduced and made more difficult to access. We are also treated differently in medical care. For several years, I have needed an operation on my knee, which is causing me great pain, but the healthcare system has de-prioritised me for help as I do not walk. The same argument was made by my insurance company, which paid out only a small amount of money when I broke my leg – they considered it to not be a big deal because I don’t walk anyway! Medical rationing is the result of cuts in healthcare budgets, and persons with disabilities often see the reality of this more than others.
This is one of the paradoxes of the success of Sweden. One of the strongest welfare states in the world has ensured that the country enjoys some of the highest standards of living in the world. However, as anywhere in this imperfect world, there are gaps. The trust in government, the faith in the system, and the belief that all the struggles to establish a social welfare state have already been won means that there is limited civil society or activism infrastructure to collectively fight back against reductions in rights and existing injustices.
Swedes who do not personally experience these injustices seem to gladly pay their taxes and trust that the money goes to a fully-functioning system. Civil society and activism is needed to draw attention to the failings in the system and campaign for change – as our collective voices are much louder than those of scattered individuals.