Life with MS

Why I Chose to Be and Advocate

By Karen Jackson
It is important to understand that there is the act of advocacy and the function of an advocate. The definition of advocacy according to the Oxford English dictionary is “public support for, or recommendation of, a particular cause or policy.”
My own definition of advocacy is simple – it means I’m participating and I am taking action in support of a cause. My advocacy umbrella covers issues affecting people with multiple sclerosis, and the stakeholders I interact with: caregivers, researchers, family members, providers (clinicians), and payors.
There are many avenues that allow us to engage in the act of advocacy and we are not limited to just lobbying or public speaking. We can be advocates by writing letters, making phone calls, fundraising, and participating in research. The one commodity none of us have enough of seems to be time, and just by volunteering our precious time we become advocates for MS. I want to make sure my voice and concerns are heard by those that are in a position to make decisions that will affect me and is well worth the effort.
I personally engage in advocacy using my voice, my body, and my physical presence. I live in Alexandria, Va. (very close to Capitol Hill.), and I feel it is my responsibility to deliver our message (using my voice) directly to legislators at all levels: federal, state, and local. The optics I present when I roll in to the offices in my wheelchair is empowering to me, and I try to speak with a sense of purpose, passion, and urgency, with the hope that I leave a powerful and memorable vision after I depart.
I lend my body – my broken nervous system and all – to help researchers decode the mystery of MS. Participating in clinical trials is a very personal choice that, for me, offers hope, for which there is no price tag. I participate for all who came before me and for those who will come after. Who knows where I would be if I had not volunteered for the trials. I am still trying to be productive and contribute to society and, most importantly, maintain my independence.
I am not anonymous. I am not just a number. I am a resilient person who happens to have a chronic disease. Being an advocate gives me visibility.
We can all be advocates and we can all participate in advocacy.
I ask myself: if I am not for myself, who will be? If I am only for myself, what am I? And if not now, when?