Editor’s note: In advance of MDA’s first ever Advocacy Conference, taking place April 23-25, we asked several advocates to unpack the idea of advocacy: what is it, why they became advocates and why it is necessary for others to follow their examples. Their responses follow.
What does advocacy mean to you?
A big word with simple meaning. If you believe strongly in someone or something, and feel the world at large pays too little attention, it may be up to you to change the equation. When you think of human trafficking, extreme poverty, disease, lack of basic freedoms – how can everyone be too busy? – Ed Tessaro
Advocacy to me means supporting a project or cause that is important to you. Support can be volunteering your time, working on Policy to make change at the congressional level, Fundraising to fund the project, cure or mission. You can work full/part time, volunteer, donate, write letters to important people in the field to gain additional support and networking. Advocacy also doesn’t always mean trying to change the regulations and laws, but working towards a solution for a need. – Michelle Erwin
Advocacy means to me: Having a strong and passionate voice. – Bridget Simpson
To me, being an advocate means, first and foremost, knowing who you are as a person and what things in life are important to you (including your needs on a daily basis). Only then can you truly be an advocate — someone who can effectively communicate to others who you are, what you need and how you want or prefer to have those needs met. This applies to medical situations (dealing with hospitals, doctors, nurses and other health professionals), educational settings, your legal rights and many other situations. In our early years, we often don’t have all the skills needed to be the best possible advocates for ourselves and rely on parents, siblings, relatives and other people in our individual “communities of care” (i.e., support networks) to be our voices. But as we grow older, we can develop the sense of self and necessary life skills to be able to stand up for ourselves, have other people respect us and have those people work with us to have our needs and desires in life met.
– Mario Damiani
Why did you become an advocate?
Orphan diseases like ALS, by definition won’t draw public interest. Few people know those patients, and fewer have any idea or interest how to help. Maybe once in a generation a random effort is cooked up between dedicated friends, and an Ice Bucket Challenge is born. But most often, the difference-makers are individuals with skin in the game, who won’t shy away from the steepness of the path. I have some of the means and skill to push the debate, ask for funding, and relentlessly lobby legislatures. There are thousands of people like me, and great organizations like the MDA to carry the weight. My work in the fight is my purpose – and it’s great therapy. – Ed Tessaro
I advocate for the things that are important to me, my family and those I see in need. My son has SMA and uses a wheelchair. I recognized a need very early on in my child’s life. Traveling with someone who uses a wheelchair was not just hard, it would later become impossible. If this was hard for my child, I knew some people who used wheelchairs were facing and feeling the same barriers or not flying at all because it was unsafe. I knew I needed to start working to see a change. I have been working for more than six years to change attitudes about truly accessible air travel. What started out as working to change policy propelled me to start working on the solution. Having kept the same mission and voice, I find that the doors that were once closed are open, our calls and emails are no longer ignored and now not only is the wheelchair community listening but so are the policy makers and airlines. I wanted people who use wheelchairs to fly safely and with dignity and that is what I work towards every day. I am an advocate for true accessible air travel with no barriers. – Michelle Erwin
I, along with my son, became an advocate to educate, share and shine a better light. – Bridget Simpson
I became an advocate because I realized as a young adult that there were times in my life where I was going to have to confront discrimination, bullying and misconceptions about my disability and at the same time be able to assert my legal rights, ask for accommodations, teach people about my disability, etc. I always had great support from family and friends, but those people weren’t able to always follow me around and be my advocates 24/7. I learned about my medical issues, how to talk to others about them and where to go for help. I learned about my legal rights, including those under the Americans with Disabilities Act, Rehabilitation Act, and Air Carrier Access Act, among others. I learned how to stand up to bullying. I learned how to deal with others. With those skills, I felt more comfortable being my own advocate. At the same time, I realized that I wasn’t the only person who was being treated differently, even negatively, due to a disability. I came to learn about the issues my friends, fellow students and work colleagues with disabilities faced and committed myself to helping advocate for others. – Mario Damiani
Why is advocacy necessary?
People are often unaware of how to help, even after being introduced to a cause. Creative advocacy brings solutions/therapies to the foreground. The list of targets includes accessible airline travel, responsible rules to accommodate the disabled, and more access to clinical trials. These changes would not happen without strong advocacy, thoughtful philanthropy and dedicated professionals. – Ed Tessaro
There are a lot of people with the same great idea who don’t know how to make it achievable. There are a lot of people who wish they could help and don’t know how. When an organization or individual advocates, it shows that the “something” that is important to them is important to other people and they are not alone. Advocating together will get any one project further than one small voice. Advocacy is necessary because there are still issues that many people do not even realize are issues. Once you get people’s attention, hit a nerve and make it important to them, you gain one more voice in your mission. With advocacy you have a vision and that creates a path for change. – Michelle Erwin
Advocacy is necessary, because there is more love & strength in numbers. – Bridget Simpson
I sincerely believe that, without advocacy, people would be robbed of their needs and their rights. By trying to advocate for ourselves and others, we can take care of one another and achieve things that might not otherwise be possible. – Mario Damiani
Become an advocate for the neuromuscular community
