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Crushed in the Wheels of the Administrative Machine

Before coming to Sweden, I had imagined it as a perfect place for persons with disabilities. When I arrived I thought that there would be no need for me as a disability rights advocate, and instead I would need new training, perhaps as a pizza chef! However, living in Sweden, it has become clear to me that disability rights in practice and the quality of life that people with disabilities can enjoy is not primarily a question of material resources. Sweden is one of the richest countries in Europe, and nobody can deny the situation for persons with disabilities here is one of the best in the world. This does not mean, however, that there is no room for improvement. Sweden prides itself on its social democratic system and its progressive self-image, but to fulfil this self-image requires continuous challenges and pushes to do better.

The Swedish system is generally based on the medical definition of disability, that is, characteristics of the person with disability, rather than characteristics of the environment and society. This means that accessibility, entitlements, and rights depend entirely on how you are categorised, and on the procedures and timeframes for doing so. At the same time, you have several parallel systems, institutions, and sets of legislation that are intended to cover the different needs and situations people can be in, which creates additional problems and complications. Each institution separately follows its own priorities and constraints, while the person with disability has to navigate the contradictions between these systems. Institutionalised silo-thinking systematically frames people with disability as a “cost”, and thereby systematically depletes our capacity and ability to contribute to society.

As a person with disability, any change in your life, even minor, means new categorisations, endless new applications, and new evaluations. Any waiting period involved in administrative applications does not only cause practical chaos in people’s lives, it is also a cause of constant anxiety and stress, which in the long run takes a high toll on health, wellbeing, and self-esteem. Hours, days, weeks, and years are wasted in tortuous and completely unnecessary administrative processes.

In the period before a new categorisation is finalised and accepted, people with disabilities are left in limbo, often without resources or income, possibly without a home, assistant, or medical care. The timeline of such applications does not correspond to the timelines and requirements of leading a life as a human being. As an example, my own process of getting access to an adapted home took three years. The difficulties in accessing an adapted apartment mean that in practice, people with disabilities are precluded from being able to move to find another job in another location. At the same time, employment agency requirements – as well as all social insurances connected to employment – presuppose that being fit and able to work also means being able to move and relocate anywhere in the country at short notice.

Importantly, there is always a very real risk that applications will be refused, and that evaluations will lead to less support rather than more. For instance, the Swedish Social Insurance Agency re-evaluates people’s needs every three years. On paper, this is to see if people may need more or fewer hours of assistance for instance, but in practice, these re-evaluations are devised to look for reasons to reduce assistance and entitlements. Standards and evaluation criteria are getting more restrictive year by year.

Besides the issues connected with application processes, the various categories used in different institutions and situations can be contradictory and problematic. For instance, having access to a supportive social network is particularly important for people with disabilities, but the systems impose pre-established categories (such as spouse or close relative) that do not necessarily correspond to the person’s needs and wishes. People can easily get trapped in abusive marriages or dysfunctional relationships with parents as a result.

Equally problematic are the categories of having disability, or being healthy, or being sick, or having long term illness, or having a chronic condition. Such categories conflict with categories such as having disability or being able to work, being employed or unemployed, having income or not.

An example of how categories can work in people’s lives is when I was advising the Skåne Regional Council on their strategic work to ensure accessibility and respect for human rights. Among other questions, I pointed to the fact that regulations require that persons with disabilities be referred to as a “patient” in any certificate issued by Regional Council entities. This is totally inappropriate for any non-medical context. Even if, for instance, an employer requires a medical certificate to understand what kind of work-place adaptation might be necessary, a person applying for a job is not a “patient”, and disability is not an illness. However, the Regional Council was unwilling to change its policy, which it said was intended to ensure a “professional” relationship between its employees and people with disability. In other words, the internal regulations of an administration can reduce an individual to being a “patient” in all aspects of their lives, regardless of whether that person is in good health or not, and regardless of whether the interaction the person had was in connection with medical treatment. This example also shows how administrations reduce their frame of understanding to how they understand their own mission, with no consideration for the consequences this may have for the people who are supposedly benefitting from their services.

Another issue, which is specific for Sweden, is how “equality” is understood. Every person is entitled to the exact same rights or services, which have to be provided in the exact same way, regardless of the circumstances. This means that efforts in administrative reform are exclusively devoted to offering “sameness” – situations that are equally bad, but that have followed a correct procedural path - rather than creating situations that are beneficial and functional for the people concerned. Also specific for Sweden is the extensive digitalization of all services, which works for me personally, but which does not work well for people with other types of disability, as pointed out recently by Malin Ekman Aldén, director of the Swedish Agency for Participation.

In Sweden, social insurances are primarily based on income from employment. This affects people with disabilities who are, because of their disability, often in a situation of having internships, short term jobs, or being in processes of rehabilitation. If they are receiving any form of support or unemployment benefits, any additional income from part-time or occasional work is deducted, which reduces the incentive and opportunities to work for people who are already disadvantaged on the employment market or are unable to function in a full time job. Also, most of the burden of physical adaptations of workplaces or cost of assistants is placed on the employer, which places people with disabilities at an additional disadvantage. The uncertainties in administrative procedures that people with disability are subjected to, and the long delays in these processes, causes further reluctance from potential employers. For people with disability, the main obstacle for finding employment is therefore not the disability, but a dysfunctional public management system geared to strip people of the very rights that it appears to uphold in principle.

While Swedish public management practices may give individual institutions the impression that they can reduce costs, the combined effect for society and for people with disabilities is disastrous. The prioritisation in public administration of “cutting costs” means that people with disabilities are de facto living with incomes below what they need to live. They are refused aids, assistants, treatment, and adaptations of workplace or homes that would be necessary for life in dignity. They are wilfully exposed to unnecessary accidents, repetitive strain, insufficient diets, stress, and deteriorating health. They are denied basic freedoms, such as freedom of movement.

Living with disability, you have to be able to plan ahead, and have margins for unexpected events. But the Swedish system gives administrations the power to micro-manage all details of your life as a person with disability, so that you are completely at the mercy of their decisions for every aspect, ranging from personal hygiene, to the times of day you can eat or drink. You have no possibility of planning ahead, nor can you create your own margins of social networks, resources, time, or money, to somehow manage your life despite these obstacles.

For things to function in the life of a person with disability, every single step of the system has to work seamlessly. If even a single piece is missing, there is no accessibility. This can only be achieved if there is perfect coordination between different institutions, attention to detail, and the will to actually create functioning circumstances. Things also have to be accessible at the exact time you need them. The Swedish public management system is constructed to allocate a particular budget to a budget year, but not to make anything available at the time and place it is needed, for the people who require it. This management system therefore systematically prevents accessibility and availability, while devouring huge resources.

If Sweden wishes to respect its own laws concerning accessibility and discrimination, focus must therefore urgently shift to the actual life situations of the people concerned, rather than the conveniences of compartimentalised administration driven by mission statements and their own individual budgets. Above all, accessibility must be understood as a matter of social structures, rather than as the personal problem of people with disability.

Chavia Ali

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