On Becoming More Interested than Afraid

I love “aha!” moments. It is the greatest feeling to finally “get” something. I have known for some time that I wanted to write this blog about my experiences with policy and advocacy within my LEND setting, but until very recently, I could not fully capture my reflections. I attended a workshop last weekend, and the leader ended the session with the quote, “Be more interested than afraid.” That is when it hit me. “Aha!” This quote completely summed up my experience for expanding my knowledge and skills in the area of policy and advocacy, and became the impetus for this blog. I used to be quite intimidated of the actual process of calling or emailing legislators’ office, and the thought of speaking to them in person scared me to death. Even though I am greatly passionate about my work with children with developmental disabilities, I had little knowledge and even less skill in how to integrate this into the policy and advocacy realm.

During my first year of traineeship at Cincinnati Children’s Hospital, I set goals for fellowship, research, community outreach, clinical skills… it felt like I had a goal for every word I uttered, it seemed.  But policy and advocacy was an area in which I was unsure of where to even begin. This Maternal Child Health (MCH) Competency area was clearly outlined, but I had no structured experience advocating for individuals with disabilities. Initially, I didn’t really get that my informal career experiences constituted advocacy, such as gently letting managed care agencies know that developmental disabilities are not “cured” in six sessions just because that is all they want to cover financially. I have advocated for my clients to receive the appropriate levels of care for their needs or for people to discontinue their use of the ever hurtful “R-word.” Though, when I sat down to write my LEND goals, I drew a blank for developing a measurable goal for policy and advocacy. Little did I know then, that “policy and advocacy” are scary words for Trainees; in fact, it’s an area that many trainees might choose to avoid. Luckily for me, my LEND program in Cincinnati places great emphasis on this area, leaving me to grapple with what my own goals might be for policy and advocacy development. As any good behaviorist, I turned to the data.

AUCD’s Early Career Professionals Self- Assessment Tool proved to be quite helpful to me for creating goals that were focused and feasible. In my first year, I was able to build basic knowledge from our LEND didactic sessions which piqued my interest and triggered me to ask more questions and read more about policy and advocacy efforts in the disability field. My LEND program did a great job of presenting the information to me at a basic level—I learned so much without feeling bad about my lack of formal knowledge. In fact, it helped me realize how many skills I already had. Then, I discovered that an invaluable experience to expand my policy and advocacy skills was to better understand advocacy from a historical context. So I read more and more. Then, election time rolled around—an exciting time in Cincinnati, Ohio. Moved by the intensity and excitement of the environment in Ohio, I couldn’t help but seek out information on each party’s political stances on issues impacting people with disabilities.  The more I saw in the media led me to be further engrossed in the importance of the 2012 election. By this time, I was hooked.

As this year’s Virtual Trainee, it was so exciting to attend the National Forum on Disability Issues in Columbus, Ohio, in the fall. It was one more opportunity to hear the issues and better understand the impact we can have as advocates. During that time, I watched as much media coverage as I could. Meet the Press became part of my weekend routine.

The election came and went and two short weeks after, I found myself in a position where I had to face my fears of advocating (and even speaking!) to legislators head-on. The vote to ratify the United Nations Treaty, the Convention on the Rights of Persons with Disabilities (CRPD) was set to occur while the AUCD Annual Conference was being held in Washington, DC. It was clear that this was going to be a close vote and that there was risk that there would not be enough votes to ratify. The buzz was all over the AUCD Conference. One of the Trainee events that I planned to lead was scheduled during a time when folks planned to go to the Hill. One of the AUCD Staff members approached me with the idea to replace the Trainee event with this real-life advocacy experience… and the rest was history—instead of leading a Trainee meeting, I became in charge of getting trainees to the Hill!! In an instant, I felt like a formal “advocate.”

Gulp…

Inside, I was terrified.

But outwardly, I appeared calm and ready to face this challenge (I think…). I was tasked with helping Trainees not only get to the Hill in a city I had not been to since my sixth grade field trip, but to also find their legislators and make an argument for ratification of CRPD (Anyone who’s ever tracked down a legislator knows this is easier said than done).  I followed the lead of self-advocates and soon my fear changed into conviction to compel legislators to understand the importance of the USA’s ratification of the CRPD. Our group of Ohio Trainees entered our Senator’s office in a large number. Once the Legislative Aide entered the room, I immediately spoke up. I provided her with information about the CRPD and encouraged her to speak with the Senator. Then, another Trainee spoke up. Then another and another. We all told our stories. The Legislative Aide, who entered the room telling us she only had a “couple minutes” to speak with us, ended up stepping closer and closer and listening more intently as each Trainee said their part. So many stories filled the air; even she couldn’t resist the allure. At the end, we thanked her for her time and all left the office feeling extremely energized. When we act as advocates, we don’t always know how it will turn out. Standing there, invigorated, we didn’t yet know then that the Senator would opt out of the vote and that CRPD would not be ratified. But it was far from a “failure,” in my mind. Personally, my fear of the advocacy process dissipated. I had my policy/advocacy “Aha!” moment. And somehow, overnight, I had become the leader I never imagined I could be. My experience and my fear helped me to understand what it’s like to be a new Trainee and hear the words “policy and advocacy” as if they were spoken in a foreign language. It also helped me understand how being interested trumps being afraid, and that knowledge and expertise are not hard and fast prerequisites to be a good advocate. All it takes is passion and an ounce of courage. And this helps me not only to be a good advocate, but to be a good leader to other Trainees.

My hope is that the story of my advocacy development can help other Trainees and Early Career Professionals push past apprehension and know they can also find confidence to speak up. No expert starts out as an expert—and neither did I, but who know what the future will bring. You never know when YOU might be faced with a similar opportunity!

In conclusion, I encourage others to follow some simple steps to building policy and advocacy skills:

1) Get some data. Either through the ECP Self-Assessment Tool, your program’s curriculum, or just by asking someone who may have more experience than you, gather some data so you can set realistic goals for yourself.

2) Read some. Then read some more. Start with AUCD’s Legislative News In-Brief. Follow the links. Add favorite websites to your homepage. Read about different issues and the stances of various disability organizations. Take in as much information as you can.

3) Show interest in opportunities. Ask questions. Find out when your state may hold an advocacy day. Become involved with any organizations advocacy efforts starting by joining listserves or networking with other leaders. And of course, as Dr. Elizabeth Rider explained to me, you can go a long way in many aspects of your career if you “become more interested than afraid.”