Kevin Nuñez, Vice Chair, Self Advocate Member New Jersey Council on Developmental Disabilities
The word advocacy is defined as “public support for or recommendation for a particular cause or policy.” This definition is just the tip of the iceberg for what my colleagues and I do every day.
I serve as vice chair of the New Jersey Council on Developmental Disabilities (NJCDD) and chairman of the State Planning and Grants Committee. This Council is a federally-mandated organization that advocates for people and families with disabilities. The committee that I preside over overseas the Council’s five-year plan as well as grants issued annually.
I’m not an advocacy expert. I didn’t finish college. Even if I did there is no degree for this labor of love. So how did I end up in this position? I learned from a variety of people just how to be an effective advocate. The following is a collection of valuable tips I learned from a variety of sources that helped me become a stronger advocate.
We must first realize that we are not alone in our struggles. So often people with disabilities and their families get trapped in their own little boxes. Some boxes are physical, like a wheelchair which can feel like a box on wheels some days.
Next there are the boxes created by an intellectual or developmental disability. Sometimes they are visible. Sometimes they are not. In my opinion, the worst box is the one I call “The Safety Box.” Most families tend to get trapped in this box because it is what they know. Some families have a tendency to complain quietly about system barriers while living in fear of changing the status quo.
If you do some quick research you will see how some major policy or system changes in the disability community during the last 30 years were started by a conversation around a kitchen table. It makes little difference if you are overthrowing a totalitarian government or dealing with a fad like the pet rock, it takes a group of people to affect change. You can have the best ideas, but if you don’t have people to help amplify your message it can only go so far.
Next, I suggest that you ask questions. People are so afraid to ask questions because they believe they will look weak. You can never get answers if you don’t ask questions. When I joined the Council, I asked a ton of questions. Everything from procedures to what I could and could not get reimbursed. Sometimes I could feel a person’s eyes rolling as they opened my e-mail.
Asking questions showed people that I was hungry and I would keep striving. Put simply, sometimes we don’t know what we don’t know. So many times, the answers to what we seek already exist. We just have to know how to access them.
Unless we put ourselves out there, we can never improve a situation. The disability will always be there. That doesn’t mean we cannot take steps to improve our quality of life.
To follow up, a great advocate must be well known and learn from those who came before them. I officially joined the Council in September 2016. I attended all the public meetings for a year before I was appointed. I literally became a sponge just trying to absorb everything I could. I would go up to every person I could find and introduce myself. Over time they got to know my personality, more importantly my ideas. Sometimes all they are looking for is a fresh perspective. It all began with me showing up for one meeting.
In continuation, I feel you should never allow yourself to believe that you are the smartest person in the room. All great advocates are leaders in their own way. As a leader you must recognize that you need help and support. Surround yourself with good people to help construct your vision. Then, you must realize you will never get exactly what you want. Aim for the moon to catch a star. Compromising is paramount.
My next suggestion is to get to know people. If you are going to lead you must learn how to motivate people and find out what they need to be successful. Everyone learns a little differently, motivation works the same way. Some people need tough love, others need a more positive approach. If you slow down and get to know a person, you’ll learn how they react to a particular situation.
Your job is to make people feel comfortable enough to tell you what they need to grow and develop a more meaningful life. Positive people help to improve their environment. They eventually help a group flourish, and be triumphant. Everyone in my committee has my personal phone number. They know they can contact me to discuss whatever they feel is important.
Finally, do the hard work. I had never read a grant before joining this committee. I took so many notes and did so much research on my own, that when it came time for the meeting, I had nothing to be nervous about. If you don’t know something, look it up. Don’t wait and just assume people will do it for you. Learn the difference between delegation and convenience. Take pride in your actions. Be responsible for the fallout of those actions. A good leader does not blame others or take credit for the work of others.
I hope these tips will help you with any advocacy project you are working on. Find what works for you. If you are presented with an opportunity, take it. You never know what you can do until you try. It will not always be easy or fun, but nothing worth doing is. I wanted to end this the same way I end all my communications, “thank you for your time and your commitment to this process.”