Do not blame the sailor while the ship is sinking

Yesterday, I appeared in an interview with the Swedish Arabic language media platform “Alkompis”, to talk about the challenges people with disabilities are facing in Sweden today.

Sweden has long been known for its respect of human rights and progressive policies. But over the past decades, healthcare, social insurances, and a large number of other public services in Sweden have been exposed to budget cuts. This affects essential public meeting spaces - for instance libraries, civil society organisations, and the voluntary sector - as well as authorities such as the Swedish Social Insurance Agency, the Swedish Public Employment Service, or the Swedish Pensions Agency.  Digitalisation strategies have meant that many services have reduced opening hours or entirely closed their physical offices, and it is anticipated that AI will increasingly be deployed in processing applications and case work, setting budgets, and monitoring.

For persons with disabilities, the consequences of budget cuts and changes in service provision are particularly dire. Among the most serious issues are the restrictions in personal assistance. Receiving a personal assistant is a service that is only granted to individuals with severe disabilities - above all in cases where not having assistance would endanger life or lead to serious medical complications, due to lack of hygiene, difficulties in eating, or even breathing. The number of persons receiving personal assistants in Sweden 2024 was 13,343. This represents a decrease of 25% since 2015, while the number of persons who need this service has likely risen in the same period, due to an aging population. Additionally, despite promises made by the government in 2024, state contributions to the cost of personal assistants foreseen in the 2025 budget do not cover actual costs of service providers. This leads to a deterioration both in the quality of services that are provided and in working conditions for personal assistants. Concerns have also been expressed, that in view of greater expenses anticipated for the military and police, the government may issue letters of appropriation, which in practice would lead to even more restrictive interpretations of needs.

After the Alkompis interview aired, I had expected that it would trigger a discussion among Arabic speakers in Sweden, and hopefully also some suggestions for how to reverse these worrying developments. Many comments did in fact affirm the need to talk more about these issues, and several expressed gratitude for support that I had provided to the community in the past. Personally, I was moved by many of these comments, and I was happy to see how many Alkompis readers engaged with the topic. But I had been totally unprepared for the backlash that also followed.  Some comments told me to “go back to my country” if I didn’t like Sweden. Others mocked my appearance and the colour of my hair. One person wrote that if I were in my home country, I would be begging on the streets, and that Sweden gave me rights I could never have dreamed of as a person with disability. What hurt the most wasn’t the insults. It was the mindset. The inability to see that I was speaking not for myself, but for all of us, Swedish-born or migrant. Disability rights are not a personal grievance. They’re a collective responsibility.

It seemed that those who left hateful comments could not imagine that they, or someone they love, could find themselves one day in the same situation I am trying to improve. Disability doesn’t ask for passports. It doesn’t ask for permission. It can happen to anyone, at any time. I also firmly believe that persons with disability – in Sweden or in any other country - are the “canary in the coalmine”, and that ignoring our voices places all of society in great peril. The erosion of disability rights is not just a “disability issue.”  It is the beginning of a wider decline in human rights and equality for all of us. When societies begin to compromise on the dignity and equality of their most vulnerable members, it is not a “special case.”  It is the start of the end of justice and humanity as shared values.

What we’re seeing today in Sweden - the reduction of support, the increasing difficulty in accessing services, the treatment of disability as a bureaucratic or financial burden, rather than a natural part of human diversity - is more than administrative reform.  It’s a warning bell. If we don’t act now, it’s not only people with disabilities who will suffer.  We all lose in a society that fails to protect everyone equally.  Because dignity is not something that can be selectively applied.  Rights are either protected for everyone - or they begin to disappear for everyone.

Fighting for disability rights is not about complaining.  It’s about holding onto a vision of society where everyone, without exception, has the space to live with dignity, inclusion, and respect.

And that fight is not just for me.  

It’s for you.  

It’s for all of us – and for the ship that we all live on.

Chavia Ali