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).
|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
No Longer One of Jerry’s Kids- Washington Post
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.