Over September 23–25, I traveled back to Brussels to participate and volunteer in the Freedom Drive 2024, the flagship, bi-annual event organized by the European Network on Independent Living (ENIL). Hundreds of disability activists gathered from across Europe to join forces, have discussions, learn from each other, empower one another, and amplify our shared calls for change and equal human rights and individual freedoms for people with disabilities. The theme of the Freedom Drive this edition was: “Reclaiming Our Rights Now!” and there was a palpable sense of energy during all the events to fight for real, tangible reforms, policies, and implementation of these policies to facilitate true independent living and ensure disabled people across Europe could exercise choice and control over their lives.
The first day, I was volunteering with the art workshop, where participants could create their own custom posters for the big demonstration the following day. There was a lot to do to help with organizing the workshop and assist with creating the posters, but felt good to contribute and meet some new friendly disability activists from France and Germany through the event. I even got to paint my own custom poster at the end of the workshop.
The many custom posters from the workshop, and my own poster
Displaying the impressive Freedom Drive banner, complete with artistic wheel-tracks and walking cane prints from participants using electric wheelchairs and walking canes
The main event of the Freedom Drive is the march onto the EU parliament building, where this year over 300 people, most of them with disabilities, marched or rolled through the center of Brussels, brandishing custom posters and chanting our demands for equality and independence for people with disabilities. It was a powerful experience to participate in the march carrying the ENIL banner near the front of the crowd, marching in solidarity with fellow activists and allies, and shouting along to the slogans. So many people turned their heads or started watching or filming as we passed, and we definitely made Brussels notice our presence and our voice. The march concluded at the EU parliament building, where we then held a hearing inside, with high profile speakers and members of the EU parliament present, to put forward ENIL’s demands for freedom, independent living, and de-institutionalization for all disabled people across Europe. It was interesting going from the more public and visible form of activism with the big march across the city to the smaller scale, more nuanced discussions on nitty-gritty details of policy and legislation. One form of activism gets the issue noticed more broadly and recruits more people to our side, while the other is where real changes in legislation and policy can come about to improve the situation for people with disabilities in the real world. But it’s crucial to hold the policy-makers and politicians accountable to make sure gestures go beyond just talk and take the form of real action!
Making our voices heard on the streets of Brussels
Arriving to the EU parliament
At the hearing within the EU parliament
ENIL also celebrated its 35th anniversary of the organization’s founding during this Freedom Drive, and we celebrated with a big ballroom dinner and many moving speeches. Unfortunately, this year one of the forefathers and true revolutionaries in igniting the independent living movement in Europe, Adolf Ratzka, passed away. Adolf was a visionary leader for disability rights and independent living, establishing STIL, Sweden’s first personal assistance project and the founders and now facilitators of independent living in Sweden, launching the Independent Living Institute, which promotes the principles of independent living and fights at the legal and policy-level to advance the rights of people with disabilities in Sweden, and even being one of the co-founders of ENIL, recognizing the importance of international collaboration and coming together across countries to educate and empower one another and find a unified voice to advance independent living across the European continent (read more about Adolf’s impact and work here: https://enil.eu/adolf-ratzka-a-pioneer-of-independent-living/). I had learned about Adolf’s incredible life and work during my meeting with STIL in Sweden, but unfortunately I wasn’t able to meet him in-person before his tragic passing. Many of the ENIL members at the Freedom Drive had known Adolf well, and there were many touching and poignant speeches about his impact and legacy. The speeches also reinforced how impactful and progressive the independent living movement and all of the rebellious and strong leaders, from Judy Heumann in the US, Kalle Könkköla in Finland, Adolf Ratzka in Sweden, and many others, have been to change the societal perspective on people with disabilities and fight for disabled people’s equal humanity, independence, and right to pursue their own happy and meaningful life on their terms. The passing of each of these icons leaves a huge hole, but it is up to us now to continue to carry their torch and take the independent living movement forward, especially in this time where the social support, independence, and freedoms of people with disabilities are under jeopardy. I’m proud to support ENIL and try to do what I can as an ally to keep fighting for independent living for all, and I hope you’ll join me in this crucial fight!
Ballroom dinner, moving speeches, and bad-ass pins!
The last event of the Freedom Drive was a conference, with a variety of diverse speakers, from activists to politicians, lawyers, and diplomats, all bringing diverse perspectives to the important topics relevant to the independent living movement. I still have so much to learn within this field, and many of the topics are very complex, involve different aspects of society, and require nuanced negotiations between different parties. There were some heavy discussions on the topic of de-institutionalization, for example, which is the objective to close all forms of segregating institutions that separate people with disabilities from the rest of society and restrict their personal freedom in their lives (read more on de-institutionalization on the ENIL website here: https://enil.eu/deinstitutionalisation/). There were some harrowing stories of the appalling conditions some people with disabilities were living in particular institutions in Hungary, and the ways in which these kinds of institutions are being sustained and even in some cases supported by EU funding in spite of direct laws stipulating the independence of people with disabilities and ending such segregational facilities. Of course, the topic is not all black and white, as not all institutions create such deplorable life conditions, and enabling the independence of people with more-complex combined physical and cognitive disabilities will require more than just shutting down institutions, but the talks hammered home that many people with disabilities even throughout Europe are still being treated as second-class citizens and forced to live in conditions that degrade them and strip them of their personal agency over their lives, which is something we have to fight to end. There was also an emotional discussion on supported decision-making and how we can facilitate independence and more fulfilling and self-determined lives for people that are often considered “too complex” to have independent living and full choice and control over their lives because of their extensive physical and cognitive disabilities (read more on the ideas of supported decision-making here: https://enil.eu/self-advocacy-supported-decision-making-and-personal-assistance-the-building-blocks-of-an-ordinary-life/). The crux of the solution in the talk came to simply listening. If we listen, really listen to each individual, respecting their equal dignity as a human being, and trying to listen and understand their unique wants and desires for themselves, and build connections and friendships based on shared interests, then we can support the freedom and independence of everyone, no matter how “complex” they may be. There are so many different ways to be human, and no one way is better or more valid than any other. Fundamentally we all want to be heard, listened to, and understood, and to be able to do the things we like and strive for our personal dreams in life. It will take work to change both societal structures and attitudes, but we’ll all benefit when we build a world where everyone with all different abilities can fully live and thrive!
Finally, I joined in a dinner with the ENIL team and the other volunteers to close out the Freedom Drive, where we ordered pizzas and just chatted and hung out. It was an amazing feeling to feel like a part of the ENIL team, and now to have gotten to know so many of the great people that make up ENIL so well. Honestly, I was so impressed with the Freedom Drive, and how ambitious and jam-packed the event was, with the over 300-person march, the many talks with the high profile speakers, and how much ENIL was able to organize and realize with such a small team and quite limited resources. I was also really happy to have done my small part as a volunteer to help make the event a success. Many of the ENIL veterans actually said that this year was the best Freedom Drive they had attended, and I must say it was a fantastic first experience of the event for me. I certainly hope it won’t be the last!
Thank you ENIL!
Please help to support ENIL’s work and the independent living movement for freedom and self-determination for all people with disabilities by donating to my fundraiser for ENIL and sharing the message with your friends and family. You can find my fundraiser link here: https://gofund.me/c91cc702
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