While in Stockholm, I had the privilege and pleasure to meet with three fantastic and hardworking organizations working for disability rights, inclusion, and independent living in Sweden. I first met with JAG, which is both a personal assistance provider as well as the interest organization representing people with intellectual disabilities in Sweden. As an interest organization, JAG promotes the rights of intellectually disabled people and ensures disabled voices are heard in Swedish politics and decision-making, with JAG members often presenting in front of parliament and advocating for the right to independence and self-determination for people with intellectual and developmental disabilities. JAG also works to end hate speech and discrimination against people with intellectual disabilities across Sweden. The other branch of JAG is a non-profit personal assistance provider. Personal assistance is a core pillar of independent living, and involves the relationship between an individual with disabilities and one or more non-disabled personal assistants providing support for the disabled individual to perform activities based on their choices and desires in everyday life. JAG means “I” or “Me” in Swedish, and the tagline for JAG is “JAG är som du”, which means “I’m like you”. This philosophy underpins the core of JAG’s work, that we’re all people, and individuals with intellectual disabilities should also be treated as human beings with equal value, dignity, potential, and dreams, and are entitled to the opportunities are personal support to live full, independent, and self-determined lives just as we all are. Meeting with JAG was meaningful for me, as I was able to talk with and hear the stories of many of their members, who themselves had intellectual disabilities and received personal assistance from JAG, and who displayed so much creativity, tenacity, independence, and freedom of spirit. I learned a lot from the experience, coming away feeling personally empowered and connected with JAG’s philosophy that everyone fundamentally has the capability to live independently, exercise personal agency, and deserves the opportunity to choose and control their own lives.
A great meeting with JAG members, like Erika, and getting some JAG swag!
I then met with the Independent Living Institute (ILI), which was actually the organization that first introduced me to the independent living movement and how I found and eventually partnered with ENIL. I deeply connected with the quotes on the ILI website by founder Adolf Ratzka (one of the most respected leaders and visionaries of the independent living movement in Sweden and throughout Europe, who tragically passed away very recently – Rest in Power Adolf), describing what the independent living movement was fighting for: “Independent Living means that we demand the same choices and control in our everyday lives that our non-disabled brothers and sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, work in jobs that are in line with our education and interests, and start families of our own… We are profoundly ordinary people sharing the same need to feel included, recognized and loved.” ILI is a policy-development organization that promotes self-determination of people with disabilities through lobbying, education, research, and projects, as well as provides a repertoire of important information on independent living and personal assistance for people with disabilities throughout Sweden and internationally. Some of ILI’s current projects include ‘Assistanskol’, a research initiative that compares services offered by the more than 800 personal assistance providers across Sweden, and shares news articles explaining more about personal assistance, and ‘Disabled Refugees Welcome’, a project assisting immigrants and refugees with disabilities to integrate when coming to Sweden and to access essential services such as housing, education, employment, and personal assistance. ILI also provides personal legislative support for disabled individuals in cases involving their rights or access to services, such as personal assistance. As Emil and Kenneth put it to me in our meeting, the main goal of ILI is: “to promote disabled people’s personal and political power”.
It was great to meet with Kenneth and Emil from ILI, and I learned a lot!
The final organization I was able to meet was STIL, the founders of the independent living movement in Sweden. STIL was founded by the same visionary Adolf Ratzka, who had completed his master’s degree in the USA using personal assistance, and wanted the same deal as he had negotiated in America when undertaking his PhD in Sweden, to personally receive the money that would be used for his home-care to instead hire his own personal assistants and maintain his autonomy and control his own life and decisions. He had to fight hard, though, as Sweden was reluctant to change its existing home-care programs, and the individualist and liberal nature of personal assistance clashed with some of the socialist elements of Swedish culture/society. His persistence and unrelenting spirit for freedom won out in the end, though, and Adolf, along with some of his disabled colleagues, started the STIL project in 1984, which was the first personal assistance and independent living organization in Sweden. Since then, Sweden has become perhaps the most progressive country in the world for personal assistance and independent living for people with disabilities, and STIL was the catalyst and played an immense role in this progress! Like JAG, STIL is a two-part organization with one prong as the non-profit personal assistance provider and the other as a disability advocacy organization, promoting the values and practices of independent living, fighting for political representation and positive legislation for disabled people, and acting as an expert group on disability policy issues. STIL’s philosophy of personal assistance is centered on the idea of the individual with disabilities being “their own supervisor”, and taking full control as well as responsibility for their independence and personal life decisions, which is at the core of true self-determination. STIL is in close contact with ENIL and is active in international collaboration, as part of an international network sharing ideas and strategies on how to promote independent living globally and adapting it to different countries and contexts. Finally, STIL, along with JAG and ILI, know peer support is essential, and a crucial part of the work of all three organizations is providing a space for people with disabilities in Sweden to support and empower each other to believe in one’s own ability to self-govern, take responsibility, and truly live a full and independent life, and through the process, foster genuine self-confidence, and a true sense of personal identity and self-worth.
Thank you Emma for an interesting and illuminating meeting with STIL!
Through my discussions with JAG, ILI, and STIL, I learned that Sweden (in large part thanks to the resilient and uncompromising work of these organizations themselves), has what is probably the most progressive personal assistance system in the world, with over 18,000 disabled people across the country receiving personal assistance. Unfortunately, though, I also learned that the situation is now declining in Sweden, with a drop of approximately 2,500 personal assistance users compared to the peak in 2009, and it has become harder and harder for individuals with disabilities to receive the personal assistance they are entitled to. A lot of this regression has come from negative court decisions, which have given more control to the municipalities to reduce allocation of personal assistance and add greater blocks to accessing it. Municipalities or politicians opposed to personal assistance or independent living programs often make the claim that the programs are too expensive, or that they need to cut budgets, but if the unseen costs of alternative options are accounted for (namely, the loss in independence and productivity of both the individual with disabilities and their family members that likely need to take on a role as caregiver), then personal assistance is no more expensive than home-care or other programs. Further, in my eyes there is something fundamentally corrupt in a philosophy that prioritizes cost savings over the equal human rights, dignity, and independence of people with disabilities. And even when an individual may receive their personal assistance, the quality of the service can vary dramatically, with many personal assistance providers operating under a for-profit model, which can lead to prioritization of profit and lowering costs in providing and organizing the assistance. Both JAG and STIL are proud to be non-profit personal assistance providers, and ensure the quality of their assistance services, keeping the individual with disabilities and their independence, desires, and identity at the core for every member. It was worrying hearing from these organizations that the negative trend in personal assistance and independent living may continue, and the current political environment not only in Sweden, but across Europe and even around the world, makes it challenging to advocate and fight for the basic human rights of everyone, especially those with disabilities, who are so often excluded and silenced. All of this is why the work being done by organizations like JAG, ILI, and STIL is so essential! We have to keep this fight going, amplify the voices and interests of people with disabilities to ensure they are being heard and accounted for and not left behind or forgotten, and being part of working towards true independent living and self-determination for everyone, as Adolf so succinctly and powerfully put it: we are all “profoundly ordinary people sharing the same need to feel included, recognized and loved!”
Thank you for reading, and thank you to Kerstin, Emil, Kenneth, and Emma for taking the time to meet with me and share about each of your organizations impactful work! Please check out the featured organizations at the links below.
ILI: https://www.independentliving.org/
STIL: https://www.stil.se/