What drives you? Fear of the unknown. dismal deaf education statistics. conflict arising from advocating for educational services. the unemployment and underemployment of individuals who are deaf or hard of hearing.. hearing parents trying to cope with the lack of information about having a child who is born to them with a hearing loss..
As parents, professionals, and advocates who are united in our efforts to improve the lives of children who are deaf and hard of hearing, there are many challenges that we must face. It is important for us to stand together to battle the discrimination our children face in society and the inappropriate services sometimes offered to our children in educational and health systems.
The overwhelming task of creating systems in this country that will appropriately meet the needs of our children can sometimes lead to despair in the effort. At the Hands & Voices offices, every day parents call and email from all over the country (even the world!) seeking support for sometimes the most basic rights to communication for their deaf/hard of hearing children. Advocates become jaded from having 'heard it all', yet still horrified at the slow progress we seem to be making.
One parent, when discussing endurance needed in advocacy, said this: "But I am afraid to look at my feelings now; afraid that I will discover that the emotions that have propelled me in the past will be gone and something worse will have taken their place: weariness.Can I last as long as it will take?" (Changed by a Child, pg. 248, Doubleday, 1970)
So where does one find the strength, energy, passion and commitment to 'endure'? It is celebrating 'the good things': the one administrator in a state who pushes the system to reform; the teacher of the deaf who stands in the face of political pressure to advocate for a student; the legacy of "Deaf President Now" that to this day has impacted the rights of deaf/hh individuals; it is the parent who works for years, unpaid, giving up time in her own business in order to give her time to others; it is the health professional that throws screening equipment in his trunk and drives all over the state so that babies may be screened; it is the scientist working in a lab to create better technology; it is the attorney that explores the legal concepts in our constitution to further the cause.. I will stop and take the time today, to recognize and honor those who will step up to the plate and say, "ENOUGH, we CAN do better". It creates hope and a belief that things will improve for our children.
Yet another aspect of "The Good Things" is often shared between parents, truly lived and understood by deaf and hard of hearing individuals, and often missed by the professionals that serve us. For many hearing parents, it is the unexpected joy in the journey that arises from having the title, "Parent of a child who is Deaf or Hard of Hearing:" Our lives are improved by having the privilege of seeing outside the box of the 'typical' life. Our children change us, create character in us that we need, help us to see people as human beings first and foremost, help us to understand the diversity of humanity. Many of us have learned another language, or at the very least, how to communicate in different ways.
Recently, Robert Baldwin, a deaf individual, shared his perspective on the journey with a group of health professionals. Below is an excerpt from his presentation (Vail, Feb. 2005 Marion Downs Center Presentation)
Finally, "The Good Things" include the enlargement of our lives because of the people and communities that are brought together due to this experience. From the very collective experience of "Deaf culture and community" to the rooms across the nation where parents gather to increase knowledge and awareness, we are always aware of the fact that this experience has opened our world to meeting lots of wonderful people.
So, can we last as long as it will take to better the lives of our children? If you haven't already, step up to the plate and do your part in changing the systems that serve our children..We need you! Celebrate "The Good Things" today. Believe in the future for the next generation of deaf and hard of hearing kids. Change is coming, and it will be good.