Quote of the moment

"I have to tell it again and again: I have no doctrine. I only point out something. I point out reality, I point out something in reality which has not or too little been seen. I take him who listens to me at his hand and lead him to the window. I push open the window and point outside. I have no doctrine, I carry on a dialogue." Martin Buber

Tuesday, October 19, 2010

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.






2 comments:

  1. I've gone to a teleton institution, in antofagasta big facility, and it has almost all the accommodations that they wish, I think the help that they are giving is very good, but sometimes they need more, a kid o ask for an appointment it could wait for 4 to 6 months, and this is because there is too much kids to treat.
    I like the teleton and i know part of their work, I just get frustrated for the money.
    40% that goes for payments is crazy

    ReplyDelete
  2. Thank you for your thoughts Caro. I agree with you in many ways.

    The telethon has a 30 year history here in Chile, some of it many may say is tainted by lack of transparency in its distribution of funds.

    However, it is one means of meeting a very dire need for young children with physical disabilities. UNFORTUNATELY the telethon ONLY funds for children with physical disabilities and no one else. Which means all other Chileans with different disabilities have nothing.

    What concerns me is what Milton Gonzáles A.,the director of the Telethon said in the Seminar held by the Cámara de Diputados last month. The Director of Chile's Telethon Institute (Teletón) spoke of the services provided through the annual contributions of the Teletón and its institutes of rehabilitation. Services are provided only for children who have physical disabilities. Dr. Gonzáles showed in his Powerpoint slides statistics of children who are pleased with and have benefited from the institutes' many rehabilitative programs. Dr. Gonzáles acknowledged there still remains many barriers for people with disabilities. These included physical barriers and attitudinal/cultural barriers that keep persons with disabilities from their rights as citizens.

    BUT HE ALSO acknowledged the need for and the great opportunity for society to change and to break down these barriers. There remains much work in the areas of inclusive education, improvements in community participation, transportation, elimination of discrimination, and the need to eliminate the fears and myths of disability that has subjugated Chile's citizens with disabilities.

    This will NEVER occur as long as the telethon and Chile's culture frames the institution of the Teletón to the public as a picture of poor pitiful children in need of charity without any hope in the future.

    Many have asked how is the Telethon preparing for employment opportunities? Could the telethon be expanded to assist more people? Can we see the people they are supporting as CITIZENS of Chile and NOT pobricitos. And what will happen to the children when they grow up? Will they leave the rehab center only to beg for pesos at the steps of the metro?

    Many have refused to accept this picture, this future. Right now on Facebook more than 1000 Chileans have signed on saying they want nothing of the telethon.
    See ¡¡ NO al NEGOCIO de DON FRANCISCO llamado TELETON-go !!
    (https://www.facebook.com/groups/38907409828/)

    Best of all read: Teletón vs. Derechos Humanos, Por Alejandro Hernández
    http://www.dpi.org/lang-sp/resources/details?page=740

    See other recent posts I have made on this subject:
    Cámara de Diputados hosts first seminar on disability
    http://tinyurl.com/7udppl7

    Chile's Deaf community seeks closed captioning for Telethon viewing
    http://tinyurl.com/6ofxcnw

    ReplyDelete