In honor of the final days of my official fundraising campaign for the European Network on Independent Living (ENIL), I wanted to share some personal reflections I’ve had about how my journey is connected with the ideals and principles of independent living. Through partnering with and riding for ENIL, I’ve learned so much about the independent living movement, and the values and philosophy that underlies this campaign for equal human rights and self-determination for people with disabilities. In learning more about independent living, I’ve realized how these ideas are actually deeply connected with my own motivation to embark on this journey and to the personal lessons I’ve learned so far on the road.
I guess it’s no surprise to learn that to actually embark on a journey like mine that I was not necessarily content with my life as it was. I’ve had great privilege through my life, and had the opportunities to attend a good high school, get a degree from a respected university, study for my master’s abroad, and pursue a coveted doctorate degree. In a lot of ways, I had seen my life as following these paths and opportunities that continued to very fortunately open up for me, and trusting in the process that the right opportunities would keep coming. I wasn’t really choosing my life, but letting life come to me… But, there came a time during my PhD that I started feeling an inkling discontent. An uncertainty if the direction my life was going was really what I wanted. A sprouting realization that maybe those opportunities that had always felt right before had stopped coming, and I felt lost. It started as a whisper in my mind, but it grew, little by little, to a thunderous roar. An intense yearning that life could be so much more. A burning demand to listen to these feelings, not get buried by my doubts or uncertainties, and rather to confront them, take my life into my own hands, throw everything else to the wind, and set off on a journey I knew I believed in. It was an inner call for freedom.
And I listened. On my journey so far, I’ve had to contend with both the joys and the burdens of this personal freedom. I have to choose for myself every part of every day: what to eat, when to eat, where to sleep, where to go next, what to say to the people I meet, how I take on each new day. There’s no externally-imposed schedule or plan or guide that I can fall back on, that I can give responsibility to. It’s just me. I must bear the responsibility for all I do on my ride.
This responsibility has been hard, but also so good for me. I had been a person that would often, sometimes even subconsciously, offload responsibility for my actions and decisions to anything other than myself. To others to make the decisions, or to the situation or schedule to give responsibility for why I did something. I would shrink myself, and this negatively impacted my relationships and my own self-image… But my trip doesn’t let me do this. I have to learn to listen to myself and what I really want, and to take responsibility for what I do and for the life I choose. This is the intensely human joy and burden of freedom. And this is Independent Living.
Independent Living is this same call for freedom. It is a simple and so deeply justifiable request to live a full and independent life. To have equal opportunities to decide for oneself those crucial elements that give unique shape and color to each person’s life: where you live, who you live with, who you love, what you study, what job you have, what you do with your own life. These freedoms that non-disabled people may take for granted. I can say for myself that I absolutely took these freedoms for granted, and even tried to run away from the burden and challenges that are posed by this existential liberty. But I’m learning to embrace my freedom, find myself, take responsibility for my decisions, and actively write the story of my own life.
Unfortunately, people with disabilities are still so often barred from having these same freedoms and independence over their own lives. They are discriminated when searching for jobs, and don’t have the same opportunities to choose the job they would want. They may be unable to access transportation or stores or restaurants because of inaccessibility, limiting their freedom to do the things they want to do in everyday life. They are forced to go to ‘special schools’ or to live in institutions unjustly stripping them of their agency to choose and control their own lives. Independent living isn’t about asking for some special treatment for people with disabilities. It’s a demand to simply have the same opportunities and freedoms, as well as the same burdens and responsibilities, for self-determination as everyone else. It’s a request to live the same full human experience, with all that entails.
And the best thing about independent living is that it benefits everyone! When people with disabilities are able to choose and control their lives, and be included as equal citizens in society, then they are able to shoot for their own dreams, join communities, make friends, and make a positive contribution to the world, just as we’re all trying to do. And one of the biggest lessons I’ve learned so far throughout my journey is that people with disabilities are resilient and smart and creative and funny and innovative and have so much to say and so much to contribute. So, it’s up to us to help create a world where everyone, abled or disabled, has the freedom to choose and control their own life, is seen, valued, and included as an equal member of society, and has the same chance that we all deserve, to live a full, independent live as a fellow profoundly ordinary human being. If you believe in supporting this vision and demand for independent living for everyone, please donate to my fundraiser for ENIL, the European Network on Independent Living, which is working to advance the rights and independence of people with disabilities throughout Europe and around the world. Here is the fundraiser link: https://gofund.me/e2702b31
I understand that not everyone has the financial resources or ability to donate, and that’s ok. I just hope that in learning more about the independent living movement, that you can support the cause in the ways that you can, which could mean sharing the message with your family or friends (ENIL’s website has lot’s of great information!), or trying to integrate the ideals of independent living into your own life or career or activism. Any and all of these things help, and we can all be allies to this movement in our own ways! Thank you all for reading, and in celebration and support for ENIL: Independent Living for all!