Reflections on Leadership


Every year, one of the personal highlights of my life is the Hands & Voices National Leadership Conference. I get filled up by being around such amazing parents and professionals who are making a difference in the lives of families around the world.   At about the same time every year, I also attend a leadership conference where such pronounced world leaders in their fields — everyone from Bono to Colin Powell — speak about the impact of effective leadership. The opportunity to participate in both conferences inspires both the theory and practice of leadership. There are hundreds of books you can read on the subject, and websites, seminars and training schools on how to become an effective leader are liberally available.  (In fact, when I ‘googled’ the title I chose for this article, 34,000 hits came up—so much for an original title.)

Parents as Leaders

A relatively new phenomenon has made its way onto the stage of Universal Newborn Hearing Systems around the country—that of the Parent Leader!  This is also true in the Deaf Education Reform Movement and Parent Support arenas in the field of deafness.   In the past, parents were often invited to share their feelings and experiences about their lives, but were not integrally involved in the actual hands-on processes of developing systems.  Today, you will find parents at the decision making tables of systems development, state advisory councils, staff positions in agencies, and directing their own parent support organizations (like Hands & Voices!).  Parents are presenting at national conferences, advising on University Grants, and working side by side with professionals to make the systems that serve all families more effective.

If you are a parent in a leadership position, how are you being trained, and where do you get your inspiration for leadership?  I recently heard a presentation entitled, “Whatever you do, INSPIRE me!”  The premise was that true leaders take responsibility for inspiring themselves in order to inspire others.  In order for people to follow or join a movement, people want to be inspired in their lives.  How can you be someone who inspires others?   Make sure you take time to feel inspired yourself.  Learning is vital to leadership.  If you are leading a local or statewide parent organization, providing ‘thought leadership’ in an agency, or trying to lead change in an educational system or even an individual IEP, challenge yourself to become a better leader.

Add Skill to Your Passion

And while the seeds of inspired leadership may start with passion and inspiration, (it’s pretty easy for us to be passionate about our children) SKILL must then be added. Read leadership books, spend time around successful people who have ‘done it before’—find a mentor.   No matter how great a vision an organization has, after a while, vision ‘blurs’ and gets fuzzy.  It is our job as leaders to make it clear, to set strategies, to envision “stretching” goals, and to keep speaking the vision to those around us.  Take the time in your area of parent leadership to gain new tools to learn how to lead.  Know the content of the area in which you are asked to represent the parent perspective. (I.e. learn about the Genetics of Hearing Loss, Special Education Law, etc)  Learn and grow by being around other parent leaders who are making a difference (ex: make plans now to attend next year’s H&V Leadership Conference).  Be a leader!  Don’t just respond to your role within the context of your own life experience, but walk through any door with the ability to represent hundreds of parents who weren’t asked to be at the ‘table’ of decision making.  Parents are often accused of ‘blaming’ the systems when they fail, but the new breed of parent leaders are the ones bringing innovative solutions to gaps in services.

Work On It, Not Just ‘In It’

Every day, in whatever we are doing—whether it is parenting, career, advocacy, and/or, yes, parent leadership--we are often ‘working in it’—addressing urgent, un-met, crisis needs.  We often don’t take the time to step back and ‘work on it,’  i.e. looking at the big picture, checking whether we are making movement towards our long terms goal.  If we don’t take the time to ‘work on it’—then it is hard to move a system or organization from where it’s at to where it should be.  Take the time to develop sound strategies in whatever area you are working on:  parent to parent support; educational excellence, Newborn Hearing Systems Improvement, educational advocacy, etc...

Be the Difference

Gandhi said, “You must be the change you want to see in the world.”  It’s time for parents to take it to the next level, by LEADING the way in what we want the world to be for our kids.  Now is the time.  And by the way, did I mention besides being inspired, inspiring others, and increasing your leadership skills, you actually have to roll up your sleeves and get to work?  Now—report back to me when you are done changing the world!  ~

By Janet DesGeorges, H&V Executive Director

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