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A Lesson in Politics

Pre-K teacher Michelle Puryear was no stranger to recognizing children’s behavior and learning. However, when her own child, Claire, was born, it took nearly six months before they realized she had hearing difficulty.

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Written By: Rin-rin Yu

Pre-K teacher Michelle Puryear was no stranger to recognizing children’s behavior and learning. However, when her own child, Claire, was born, it took nearly six months before they realized she had hearing difficulty.

At the time, in 2006, 44 states mandated the newborn hearing screen at birth; Tennessee, where Claire was born, did not. And thus started Michelle’s foray into politics – and making sure no other child would miss out on early identification of hearing loss. In 2008, the mandate for newborn hearing screening was signed into law.

The process, however, wasn’t that straightforward, Michelle says. “It’s really funny, how completely ignorant I was about politics,” she laughs. “I wrote our senator in Washington right away. He was very nice and said, ‘I appreciate your letter but this is something that you need to deal with at the state level.’”

She was also still teaching and raising baby Claire, so her involvement was only part-time. The second year of the process, Claire was receiving cochlear implants, so Michelle took time off to help her through the surgery and recovery and threw herself into the legislative process. “I had the flexibility to go to Legislative Plaza and meet with people and I literally got on the phone and started scheduling meetings with every representative and senator that I could,” she says. “I put [Claire] in a stroller and went down there.”

The Tennessee Disability Coalition caught wind of Michelle’s work and reached out to her. The group had been trying to work on similar legislation for several years and were running into issues specific to the insurance lobby – “a powerful lobby.” The partnership was a good one – the group brought the political side and had existing relationships with the legislators, and Michelle could offer a human element. She attended all the meetings and learned how to grab the politicians’ attention: a one-page document with Claire’s picture and bullet points listing statistics from 2008: how many states had existing newborn screening legislation, the costs when early intervention isn’t taken, and so forth.

“I would talk… about Claire and then the lobbyist with me would be able to talk to the legislator about their voting record and relationship with so and so,” she says. “Putting Claire’s face with the legislation made it more meaningful than just another lobbyist coming into their office.”

Soon, the legislation started gaining ground. It was picked up by the media, and “to any regular Joe, why wouldn’t we get this legislation in Tennessee?” Michelle recalls. “It didn’t help the insurance companies’ case.” On July 1, 2008, the Tennessee House and Senate voted unanimously to pass the bill, and the governor signed it into law. It is now known as “Claire’s Law.”

“I had no political interest,” Michelle says. “It was all a human interest for me. Being a mom of a child who had slipped through the cracks of newborn hearing legislation. If it could happen to us, it could happen to other kids.”

Michelle recognizes that her advocacy demanded real effort, and she advises those interested in making significant change at this level be prepared to invest the time and energy. She also says finding people who are “well-versed in the process is really important.”

However, she also says people who may not have the ability to commit that kind of time shouldn’t underestimate the power of helping in smaller ways, which may still make a huge difference to someone else. Since she’s busy with teaching and her two kids, she isn’t working on any specific causes, but she remains a huge advocate for early intervention. “I always put my name out there to offer my assistance to anyone with hearing loss,” she says. She’s now working on getting Claire – now a high school sophomore – to be her own advocate. Claire, a straight-A student who is on the volleyball, tennis and dance teams, is “outgoing and gregarious and loves her friends.”

“I need to start handing over the reins to her,” she says. “It’s time for me to take a step back.”

To learn more about how to effect change in your state, contact us at publicpolicy@agbell.org.

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Una lección en política

Michelle Puryear, maestra de guardería, estaba familiarizada con el reconocimiento del comportamiento y el aprendizaje de los niños. Sin embargo, cuando nació su hija Claire, tardó casi seis meses en darse cuenta de que tenía dificultades auditivas.

En aquella época, en 2006, en 44 estados de EE. UU. se exigía el cribado auditivo neonatal al nacer; en Tennessee, donde nació Claire, no se exigía. De esta forma, se inició la incursión de Michelle en la política con el objetivo de que a ningún otro niño se le dejara de realizar este cribado. En 2008, se promulgó la ley del cribado auditivo neonatal.

No obstante, el proceso no fue tan sencillo, dice Michelle. «Me hace gracia lo absolutamente ignorante que yo era en política», añade riendo. «Envié una carta a nuestro senador en Washington de inmediato. Fue muy amable y me contestó: “Aprecio su carta pero este tema debe tratarlo a nivel estatal”».

Por otra parte, seguía con su trabajo de docente y se ocupaba de Claire, por lo que su participación era solo a tiempo parcial. En el segundo año del proceso, Claire recibiría los implantes cocleares, por lo que Michelle se tomó el tiempo necesario para acompañarla durante la intervención quirúrgica y la recuperación, además de adentrarse en el proceso legislativo. «Tenía la flexibilidad de acudir a la Legislative Plaza y reunirme con personas y, literalmente, me puse al teléfono y comencé a programar reuniones con todos los representantes y senadores que pude», señala. «Metía a Claire en su carrito y me ponía en marcha».

La Tennessee Disability Coalition se enteró del trabajo de Michelle y se puso en contacto con ella. El grupo trabajaba en una legislación similar desde hacía años y se estaba encontrando con problemas específicos del lobby de los seguros, «un lobby poderoso». La asociación fue fructífera: el grupo aportaba el lado político y mantenía relaciones con los legisladores, y Michelle podía ofrecer un elemento humano. Asistió a todas las reuniones y aprendió a captar la atención de los políticos mediante un documento de una página con la fotografía de Claire y puntos en los que se numeraban las estadísticas de 2008: cuántos estados disponían de legislación relativa al cribado neonatal, los costos cuando no se utiliza la intervención temprana, etc.

«Hablaría… sobre Claire y, a continuación, junto con el activista hablaríamos con el legislador sobre su historial de votaciones y su relación con diversas personas», explica. «El ponerle cara a Claire frente a la legislación facilitó la tarea del activista».

Muy pronto, la legislación comenzó a ganar terreno. Los medios se hicieron eco de la noticia y «cualquier persona normal se preguntaba la razón de que no tuviéramos esta legislación en Tennessee», recuerda Michelle. «No ayudó en el caso de las compañías de seguros». El 1 de julio de 2008, la Cámara y el Senado de Tennessee votaron unánimemente la aprobación del proyecto de ley y el gobernador promulgó la ley. Actualmente se conoce como la «Ley de Claire».

«No tenía ningún interés político», asegura Michelle. «En mi caso, se trataba de un interés humano. Era madre de una niña a la que no había amparado la legislación de audición neonatal. Si nos pasó a nosotros, les puede pasar a otros niños».

Michelle reconoce que esta reivindicación le exigió un gran esfuerzo y aconseja a las personas interesadas ​​en conseguir cambios significativos a este nivel que se preparen para invertir tiempo y energía. Señala también que encontrar a personas que «conozcan bien el proceso tiene una gran importancia».

Sin embargo, asegura también que las personas que no dispongan de la capacidad de dedicar este tiempo no deben subestimar el poder de contribuir a una escala menor, ya que podría suponer una gran diferencia para otra persona. Dado que está ocupada con la enseñanza y sus dos hijos, no trabaja en ninguna causa específica, pero sigue siendo una gran defensora de la intervención temprana. «Siempre me ofrezco si puedo ayudar a cualquier persona con pérdida auditiva», dice. Actualmente trabaja para que Claire, que estudia segundo año de bachillerato, sea su propia defensora. Claire, que forma parte de los equipos de voleibol, tenis y baile, es «extrovertida, sociable y adora a sus amigas».

«Tengo que empezar a darle más libertad», concluye. «Es hora de dar un paso atrás».

Para obtener más información sobre cómo conseguir cambios en su estado, póngase en contacto con nosotros en publicpolicy@agbell.org.

Para mas infomación, visite a AG Bell International aquí.

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