Gringa Advocate Gears up for Chile's Teletón

Chile is gearing up for their annual Teletón hosted by Don Francisco Chile's version of Jerry Lewis. Much like the MDA Telethon held every Memorial Day weekend, Don Francisco presents in December 27 hours of love and pity (December 3-4, 2010). It's Chile's citizens and corporations opportunity to do its annual good deed by donating to the "poster-prefect pitiful children of Chile with physical disability (up to age 20-- after that they are on their own and on the street corners).

But how do Chileans with disabilities feel about their telethon? I recently attended a conference hosted by Down21: SEMINARIO INTERNACIONAL "EL DERECHO A LA EDUCACIÓN INCLUSIVA Y EL CAMINO HACIA LA VIDA AUTÓNOMA DE LAS PERSONAS EN SITUACIÓN DE DISCAPACIDAD" Universidad Diego Portales. Ejército 333. Santiago, Monday 27 September and 28  September 2010.  There was a point in the conference in which a round table discussion was offered by the Chilean adult presenters with disabilities to offer insight on their lives in Chile as a person living with a disability. I asked their point of view and opinion about the telethon and their thoughts on it as an institution. EACH and EVERYONE of them spoke clearly as to their disgust and regret that such an institution remains in today’s world, echoing the sentiment of all other adult individuals who have lived through the humiliating, demeaning portrayal of them as "hapless, hopeless handicaps” incapable of surviving without everyone’s once-a-year handouts. The Telethon, they affirmed, only served as a means of denying full access into their communities. It perpetuates the perception that individuals with disabilities are only able to survive on hand outs- never mind appropriate education, accessible communities, accommodations for those who are able to function even partially in the same space, same city, same global community as people without disabilities. Let alone acknowledgment of the humanness, their right to be accepted for who they are- Chilean Citizens- and not identified by/pitied for their disability.

At the break a Telethon employee (as I recall she was one of the directors of the organization) came up to me to “fill me in” on all the “changes and new enlightenment” occurring within the the telethon.  They are now supporting inclusive education (though she was hard press to give any specific and direct examples of how the telethon is encouraging, supporting, funding, educating or further developing access and inclusion to the general education curriculum). She reaffirmed  the telethon does not focus on individuals who are adults. That once they are older than 20 years old they no longer reap the benefits of the pity of the country. When asked how the needy children are facilitated towards making their way into the adult world she was stumped- it was a non-issue. Hmm... Could that account for all the adults individuals we see no the street corners today- or those returned home to be hidden away after their childish cuteness fades and they no longer become poster-perfect for pity?

I was joined in the conversation by members of newly formed Chilean coalition of foundations, “Vida Independente y Inclusiva en la Comunidad,” whose focus is on the development of community access and the human rights for that access and inclusion in school, community and career, especially for individuals with intellectual disabilities.  The question was asked of the director (given the recognition that short of a miracle the telethon would continue in its oblivious and damaging course) if perhaps Don Francisco and the Telethon directors would ask of the corporate donors to actually open up their businesses to offer employment and accommodations for when these pitiful poster perfect babies grew up and needed a salary to survive post-telethon.  It was suggested that the telethon could support a network of collaboration between schools, foundations, employers, and government that built in the supports for these children to learn and develop skills that could lead to meaningful accomplished adult lives just like yours,mine, Don Francisco’s... A very radical concept. A very humanizing concept. A concept that has been ratified and codified by the country but totally ignored within the culture and institutions that perpetuate pity.  

No answer was forth coming.

So what do we know about the telethon of Chile:

Wikipedia offers a breakdown of the funds received over the years (without citation).

Year	Dates	Slogan	Poster child	Goal[1]	Donations collected4	±%	US$[2]
1978	Dec. 8-9	Let us obtain the miracle (Logremos el milagro)	Jane Hermosilla	CL$30,790,000	CL$84,361,838	173,99	US$5,421,619
1979	Nov. 30 - Dec. 1	Let us repeat the incredible ( Repitamos lo increíble)	Valeria Arias	CL$84 361 838	CL$138,728,450	64,44	US$6,464,132
1980	Dec. 5-6	Standing for hope (De pie la esperanza)	José Morales	CL$138,728,450	CL$176,420,628	27,17	US$ 6,245,644
1981	Dec. 11-12	Together, everything is possible (Juntos, todo es posible)	Ana María Cortés	CL$176,420,628	CL$202,436,220	14,75	US$6,451,607
1982	Dec. 10-11	The last step is the most important (El último paso, el más importante)	Francisco Muñoz	CL$202,436,220	CL$263,402,022	30,12	US$6,997,535
1985	Dec. 6-7	Everybody's miracle (El milagro de todos)	Víctor Muñoz	CL$263,402,022	CL$368,495,845	39,90	US$5,118,424
1987	Dec. 4-5	Believe in life (Para creer en la vida)	Víctor Torres	CL$368,495,845	CL$502,293,311	36,31	US$4,849,540
1988	Dec. 2-3	It is everyone's task (Es tarea de todos)	Rodrigo Cáceres	CL$502,293,311	CL$711,712,019	41,69	US$6,193,670
1990	Dec. 7-8	Nobody falters (Nadie puede faltar)	Daniela Muñoz	CL$711,712,019	CL$1,153,291,010	62,04	US$6,404,372
1991	Nov. 29-30	Thanks to you (Gracias a usted)	Ángela Castro	CL$1,153,291,010	CL$1,803,923,485	56,42	US$8,501,810
1992	Nov. 27-28	There is so much to do (Hay tanto por hacer)	Nicolás Sánchez	CL$1,803,923,485	CL$2,874,230,697	59,33	US$11,882,333
1994	Dec. 2-3	The commitment of Chile (El compromiso de Chile)	Loreto Manzanero	CL$2,874,230,697	CL$3,640,286,169	26,65	US$12,333,809
1995	Dec. 1-2	Our great work (Nuestra gran obra)	Marcel Cáceres	CL$6,277,027,832	CL$5,534,774,829	-11,82	US$17,332,596
1996	Dec. 6-7	Another step advanced (Otro paso adelante)	Nicole Núñez	CL$5,534,774,829	CL$5,692,426,301	2,85	US$16,730,177
1998	Dec. 4-5	All we relayed (Todos contamos)	Scarlett Barrientos	CL$5,692,426,301	CL$6,029,912,577	5,93	US$15,990,236
2000	Dec. 1-2	A challenge for the Chileans (Un desafío para los chilenos)	Ignacio Soto	CL$6,029,912,577	CL$6,772,445,028	12,31	US$16,727,665
2002	Nov. 29-30	The Telethon is yours (La Teletón es tuya)	Kimberly Cruz	CL$10,000,000,000	CL$10,532,480,521	5,32	US$24,513,946
2003	Nov. 21-22	The Telethon is yours (La Teletón es tuya)	Camilo Valverde	CL$10,532,480,521	CL$10,600,000,000	0,64	US$24,438,268
2004	Dec. 3-4	They depend on you (Ellos dependen de ti)	Catalina Paillamilla	CL$10,600,000,000	CL$11,403,914,256	7,58	US$25,655,022
2006	Dec. 1-2	With all heart (Con todo el corazón)	Kelly Rodríguez	CL$11,403,914,256	CL$11,804,425,008	3,51	US$25,094,611
2007	Nov. 30 - Dec. 1	You are in each step (En cada paso estás Tú)	Matías Calderón	CL$11,804,425,008	CL$13,255,231,970	12,29	US$26,228,248
2008	Nov. 28-29	Thanks to you, we can keep going (Gracias a ti, podemos seguir)	Catalina Aranda	CL$13,255,231,970	CL$16,589,850,127	25,16	US$32,826,487
2010	Dec. 3-4	Chile, one heart (Chile, un solo corazón)		CL$16,589,850,127

This is definitely a big bucks/lucos operation. But just where does the money go...and just what lasting benefit does this little pity party have on changing the lives of children with disabilities so they may actually have an education that leads them towards meaningful careers, continued learning in college and accepted in their community as participating valued citizens?

An article in Que Pasa (edition of September 15, 1995) outlines the distribution of funds:
 "unnoticed" report in the magazine Que Pasa (edition of September 15, 1995) noted that the distribution of the proceeds of this is as follows:

• 30% intended to pay for the therapy of children with disabilities.

• Another 30% goes to building new treatment centers, or, if not done, as described above.

• 10% is earmarked for hiring the ad agency and carry out the campaign for the upcoming "Telethon."

• 25% of the funding is going to PAY TO THE LEADERS AND ARTISTS

• 5% of funds go directly to Mario Kreutzberger, A.K.A. "Don Francisco." This means, for example, that in the "Telethon" 2000, which raised $ 6,772,445,028, "Don Francisco" won the hearty amount of $ 338,622,252, for 27 hours.



People who have grown up and out of “poster-hood” are united against “the cause.” Donating and then brushing your hands to be done with any further continued involvement is not the answer. 

To learn more about this issue (from the “gringa” advocate’s perspective see re: Jerry Lewis’ MDA Telethon):
 A Test of Wills: Jerry Lewis, Jerry's Orphans, and the Telethon
http://www.ragged-edge-mag.com/archive/jerry92.htm

No Longer One of Jerry’s Kids- Washington Post
http://www.washingtonpost.com/wp-dyn/content/article/2007/08/31/AR2007083101273.html

View the video: The kids are all right:
http://www.thekidsareallright.org/watch.html (running time 30 minutes)
See back story: http://www.thekidsareallright.org/story.html

I'm still looking into the Teletón of Chile and how its beneficiaries feel about it. Feel free to comment or enlighten me on this topic.

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1.03.01

Have You Registered? Do You Have Your Ballot? Do You Know What to Do Next?

Need answers to those questions? Then visit this video explanation on how to vote overseas:

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1.03.01

EXPATS IN CHILE VOTE!! U.S. EMBASSY MAILS YOUR BALLOT HOME

The U.S. Embassy in Chile will mail your ballot for you-- 

With a tracking number!

Back home in the U.S, there are 435 House elections and 37 Senate elections this November. Several key races are very competitive, and the outcome could be determined by our vote. Just as we helped make a difference in the Obama Campaign.

Overseas votes will determine whether Senator Boxer (D-CA) wins reelection; whether Tarryl Clark (MN-06) beats Michele Bachmann and whether Mary Jo Kilroy (OH-15), Jim Himes (CT-04) and Scott Murphy (NY-20) can once again count on the winning votes cast by our members.

There are estimations that less than 10% of voters know that they need to register and request their ballots. 

 MOVE Act - New U.S. Law Makes Voting Easier for U.S. Citizens Abroad
All states must make voter registration and absentee ballot applications available electronically, as well as General Election information.  Voters will be able to get their ballot by email or fax, or go to a state website where they can download a blank absentee ballot.

However: With the new MOVE Act, some States require that you register for every election.

Living in Chile? Need to vote? Need to register to receive your absentee ballot?  

Democrats Abroad Chile can help!

1. Request your ballot at http://www.votefromabroad.org .
2. The U.S. Embassy in Santiago will mail your ballot and give you a tracking number so you can follow the ballot while in route to your voting state. 

• There are two options to get your ballot sent, in person or by mail. With either option you must please follow the instructions below:
• Place your sealed official ballot in an envelope addressed to the Embassy of the U.S. in Chile Attention: DPO Av. Andrés Bello 2800, Las Condes Santiago, Chile. 
• The official ballot should be put in another envelope, under separate cover, and include a letter that gives the Embassy your email or telephone number so they can give you your tracking number. There is no need to put the postage on your ballot.
•  Your ballot must be sealed and signed. Note, that if your ballot is not sealed it will not be sent and deemed invalid.
• You can take your ballot to the Embassy in person. Leave it with the DPO or send it by Chilean mail to the Embassy of the U.S. in Chile, Av. Andrés Bello 2800, Las Condes Santiago, Chile Andres Bello, Santiago.

Visit http://www.da-chile.org to get the link to your state’s election office where you can check on your registration.

BUT TIME IS RUNNING OUT!
Some states and territories let you check your voter registration status online.  Go to the Federal Voting Assistance Program for a link to your state.

http://www.fvap.gov/reference/links.html

Learn more about voting overseas:

Democrats Abroad

New U.S. Law Makes Voting Easier for U.S. Citizens Abroad


Overseas Vote Foundation

• Voter Registration and Ballot Request Deadlines
• Ballot Return Deadlines

For further state-specific information, click into our directory services:

• Voter Materials Transmission Options
• Election Official Contact Information
• State Contact Information

Rosa's Law Is Signed! A Memorable Day in the History of People With Disabilities

THE WHITE HOUSE

Office of the Press Secretary

___________________________________________

FOR IMMEDIATE RELEASE

October 5, 2010

Statement by the Press Secretary

On Tuesday, October 05, 2010, the President signed into law:

S. 2781, the "Rosa's Law," which changes  references in many Federal statutes that currently refer to "mental retardation" to refer, instead, to "intellectual disability" 

Under the law, “mental retardation” and “mentally retarded” will be stripped from FEDERAL HEALTH, EDUCATION and LABOR POLICY. “Intellectual disability” and “individual with an intellectual disability” will be inserted in their place. The rights of individuals with disabilities will remain the same.

Rosa's Law  is named for Rosa Marcellino, a 9-year-old Maryland girl from Edgewater who lives with Down syndrome. Rosa worked with Maryland state legislators to pass legislation in the state last year.

"This has always been about so much more than just changing words or political correctness," she said in a statement. "It's about marking a new era where the dignity of people with intellectual disabilities is respected and their value appreciated." 

See: The Arc of US: http://www.thearc.org/page.aspx?pid=1910&storyid5118=377&ncs5118=3

The measure was introduced by Sen. Barbara Mikulski, D-Md., who met Rosa's mother at a meeting on special education.

As a professional in the field of special education, an advocate for individuals with intellectual disabilities, and a parent of a young man with an intellectual disability, this day will long be celebrated in our house.

Here's to Those Walking for Our Health and Future: Susan G. Komen 3-Day Walk

Here's to my dear friend, Sandie Curtis and her team members on DCHILE Divas (see also http://dchiledivas.blogspot.com/) and everyone who will be in Washington, DC taking the Susan G Komen 3-Day Walk to find a cure for breast cancer! I encourage all who visit this blog to also stop by Sandie's page.  Her team is so very close to their goal of $10,000. With just a little help by my friends I'm sure the DCHILE Divas will make it to the top! Be sure to check out her recent interview with Fairfax, Virginia Channel 10 TV: Gotta Get Running Episode #7 Part 1 of 2 – Susan G. Komen 3-Day for the Cure. The DCHile Diva Team is comprised of Stephanie Curtis, Sandie's daughter and team captain, Nicky Howe of Australia, also living in Chile now, and of course their inspiration, Sandie Curtis.

I first met Sandie in Clifton, Virginia about five years ago. She had survived breast cancer. Our husbands worked at the same company and we lived in the same neighborhood. And we continue to live in the same neighborhood in Las Condes, Santiago, Chile. How lucky can any one person be to still have Sandie as both a friend and neighbor! One thing's for sure, I've not known Sandie to slow down for a moment and there's no indication that she will anytime soon. In fact she's already signed up for the 2011 3-Day Walk in San Diego!

Cancer knows no boundaries and is not a stranger to many of us, least of all me.  My grandmother endured cervical cancer. Cancer has also touched my husband's family in Spain but I am happy to say they gave it a 1-2 punch. back. From the Susan G. Komen Global Movement

More than 25 million people have been diagnosed and 10 million could die in the next 25 years without the cures. Together, we can change this. Susan G. Komen for the Cure® is working daily in countries around the world to empower people with life-saving information and to raise funds for the global breast cancer fight. Through initiatives, events and innovative programs, we're helping people in areas where breast cancer deaths are high and treatments are not readily available.

 Learn more about their global initiative.

Chile is also very aware of the issue of breast cancer. In our Las Condes neighborhood banners and pink ribbons adorn the poles lining Avenida Apoquindo

According to Juan Carlos Acevedo, head of the Comprehensive Breast Center of the CLC, nearly one out 10 women in Chile have breast cancer.   Chile's foundation, Yo Mujer Corporación Contra el Cáncer de Mama recently hosted their 6th Corrida Yo Mujer or Run For the cure Sunday, October 3, 2010. As part of the campaign, municipal buildings will be illuminated in pink (color symbolic of the campaign)  in Antofagasta, Valparaiso, Talca, Concepción, Puerto Montt, and Santiago.  On October 4 through October 14 the Palacio La Moneda and regions will be lit up in pink.  Run for Life also occurred in Antofagasta, Valparaiso and Concepcion,  while in Puerto Montt, Talca enjoyed entertaining dances. The National Women's Service (SERNAM ) and Clínica Las Condes has launched a campaign to prevent breast cancer, providing women educational information by physicians.  A facility will be installed, opposite the Palace of La Moneda in Santiago with experts encouraging women to learn more about self-examination.

While a cure is still just out of our reach, what is firmly in our grasp is the technology and examinations that can help detect, prevent and help arrest the further development of cancer. Yet here in Chile, while the mammography technology is available, many have difficulty accessing it and trusting the results.  CNN Chile reports only 20% of the clinics in have voluntarily sought out certification (La importancia de la certificación de calidad de las mamografías). The news report stated that the list of those clinics and doctors who are certified is made public...but on the internet. Of course notwithstanding is the issue of digital divide (public only to those who have access to a computer/internet). 

Below are the only clinics that are certified in Santiago to offer mammography examinations as posted on http://www.sochradi.cl/cap_mama.php

GRUPO COMISION DE ACREDITACION

Médicos Radiólogos
Dra. María Lorena Díaz
Dra. Paulina González
Dra. Consuelo Fernández
Dr. Miguel Angel Pinochet
Dra. Marcela Uchida


Tecnólogos Médicos
Sra. Ana María Castro
Sra. Elizabeth Cañipa
Sra. María Paz Durán


Físico Médico
Sr. Fernando Leyton
Sr. Gabriel Zelada

CENTROS ACREDITADOS

Centro de Diagnóstico San Vicente de Paul
Centro Médico Clínica Ciudad del Mar
Centro Radiológico Su Vida
Clínica Alemana de Santiago
Clínica Avansalud Providencia
Clínica Avansalud Vespucio S.A.
Clínica Indisa
Clínica Santa María
Clínica Las Condes
Corporación Nacional del Cáncer de Santiago
Docthos S.A.
Ginelab Ltda.
Imágenes Diagnósticas
Integramédica Barcelona Providencia S.A.
Instituto de Radiología, Ecografía y Mamografía Dr. Iván Ipinza Gutiérrez
Instituto Radiológico Providencia
Megasalud Providencia (Mamodiagnóstico Ltda.)
Procedimientos Diagnósticos S.A.
Radiología Centro Médico Alcántara - Pontificia Universidad Católica de Chile
Radiología Centro Médico Marcoleta – Pontificia Universidad Católica de Chile
Radiológico y Laboratorio Santa Lucía Ltda.
Centro Carlos Edwards
Centro Radiológico Plaza Ñuñoa
Sonorad Las Bellotas

Have you had your breast exam?