Hunter McGowan on Capitol Hill

The Power of Advocacy and Leadership

A college student who is deafblind due to Usher Syndrome tells about his experience with advocacy and leadership.

Advocacy and leadership can be powerful ways to achieve multiple tasks and create various levels of awareness in society.

What do we mean by “Advocacy” and “Leadership”?

My own definition of advocacy is taking action and being accountable for oneself in creating a better life.  The act of leadership is the ability to empower others to achieve a collective set of goals for a progressive future.  My two particular definitions are one way in which to explain advocacy and leadership, but they can take many different forms.  Leadership and advocacy often go together and can be used effectively to accomplish a set of tasks.  In addition, the development of self-determination skills is a central requirement in both good advocacy and leadership skills.  These skills are acquired through experience and not given from birth.  Knowledge of advocacy and leadership can be valuable tools as one strives for more independence. The creation of a strong foundation starts with the family, education, peers, and other experiences to develop those necessary skills.  The goal in all of these is to develop the child’s own strong capacity to self-advocate and to become a leader, based upon their own experiences.

Deafblind Citizens in Action

I am a new member of a nonprofit deafblind educational group called DeafBlind Citizens in Action or DBCA.   The group DBCA is a young adult leadership organization that consists of diverse deafblind members across the U.S.  The small group began in 2009 wanting to represent the national deafblind community to promote equal access in all parts of life. Equal access includes the areas of communication, education, technology, environmental information, and overall inclusion into society. DBCA’s main objective is to support access, primarily through reforms of policy.  As a group DBCA supports the fair representation of all disabilities and ethnicities, with an emphasis on the deafblind community.

DBCA hosts an annual week-long session in Washington, D.C. inviting current members, potential new participants, and dedicated volunteers (SSP and interpreters) to support the group in policy making.  As a potential participant I was recommended to join DBCA in D.C. for the week-long session of intense advocacy and leadership, along with other current members serving as mentors.  The agenda for the week was to meet with four federal departments, attend appointments on Capitol Hill, and to have DBCA group discussions.

Advocating for the Cogswell-Macy Act

During the week, we met with the Department of Transportation, Federal Communication Commission, Department of Justice, and Office of Special Education with each having a specific agenda to discuss.  In addition we were on Capitol Hill meeting our own District Representative, Senators, and their Legislative Assistants to discuss the importance of the Cogswell Macy Act for children with deafblindness,  in education.  When the Cogswell Macy Act becomes legislation, it will provide specific national guidelines for equal and appropriate education for children with blindness, hearing impairments, and deafblindness in the reauthorization of IDEA.  DBCA is a collective source of advocacy and leadership to support necessary improvements.

DBCA meetings were held throughout the week at the house where we were staying.  The gatherings were informal, meaning they were only for DBCA members, but were important to discuss the progress of our agenda for the week.   These conversations were mostly concerned with what needed to be done, how we would address things, and the monitoring of our individual contributions to the success of the organization on reforms.   The process of working with DBCA has enhanced the understanding of my role in advocacy and leadership at a greater level.  Advocacy and leadership begin with oneself.  Although the development of the self is important, the strength of a community has overwhelming potential when working together for increased advocacy and leadership.

Overall as a new member of DBCA I will make the effort to remain active to contribute to the deafblind community on a local, state, and national level to increase equal access in daily life.  I hope my connection with DBCA will grow in having more instrumental roles for future progress.  The practice of self-determination, action, education, and accountability enables each of us to use our experiences to serve others and to contribute to the enhancement of social reforms.

Pinterest collage of leadership and advocacy

By Hunter McGowan

Analía seating at a desk full of notebooks, school materials and her laptop

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