This is the English version of the post published on Con P de Párkinson. The original Spanish can be found here.
In 2017 I read an article in Eldiario.es written by Cristina Neill about the traits of an activist. This year, on April 11, World Parkinson's Day, I reflected on what it means to be an activist from my perspective.
It has been 9 years and 7 months since a neurologist told me I had Parkinson’s —you already know that part of my story. Today I look back and it seems that the question I asked myself —where are the women with Parkinson's?— prompted me to create Con P de Párkinson (P as in Parkinson’s), to look for women like me, women who had a squatter tenant in their body.
If I look back, I see that I have become an activist in the fight against Parkinson's disease. In doing so, I have met like-minded people with whom I have woven a network of giving and receiving, of sharing.
No one knows Parkinson's better than us, the people who live with this disease. Each of us has a unique experience to tell and share. There is a risk of believing in our uniqueness, of believing that we are special. So, it is time to ask ourselves: what am I looking for when I say I want to be a Parkinson's activist?
I started taking part in this Parkinson's activism because I believe in people and the transformative power we have. In order to make this activism positive we need:
TRUST: an activist is a person who trusts that things can be changed, trusts people and believes in teamwork.
CRITICAL THINKING: an activist reviews and analyzes their message, always trying to give their best. The goal is not to control, but knowing that continuous improvement will yield efficient results.
INNOVATION AND CREATIVITY: an activist is able to look at the world from different perspectives because their essence is being proactive and generating ideas.
COMMUNITY SENSE: an activist does not act alone, but rather understands solidarity as something that goes beyond the group or individual interest. The activist knows that they cannot reach everything and that is why working as a community is fundamental.
SOLIDARITY: an activist joins forces with others for the common good and considers that there are no problems that are exclusively individual.
SOCIAL AWARENESS: an activist does not act in a vacuum, they understand solidarity as something that goes beyond oneself. An activist knows that they cannot do everything and that, for this reason, having a tribe is fundamental. An activist is always thinking about “we”.
COMMITMENT: The activist must have the ability to get involved, either actively or only in their leisure time, but it is an intrinsic commitment that comes from the heart, and not an obligation.
PASSION: the activist is passionate about being an activist and strives to transmit the message and to achieve change. They savor the achievements, but also the way there.
LAUGHTER: the activist knows that it is not easy to laugh when things do not go their way. But they also know that they should laugh because it already is hard enough to live with what we have without being happy with what we do.
We can achieve change if we fight together, if we put our own thoughts at the service of others and the common interest above individual interests. Today, I can say it is an honor for me to share my passion with my team of friends.
Con P de Párkinson
Translation into English by María Santamaría Díaz (Universidad Complutense, Madrid)