Una historia de valentía, sabiduría y fe (Cómo una familia puertorriqueña pobre abrazó la riqueza de la vida)

por Eileen Rivera Ley

Nota editorial: Esta entrada de blog fue escrita por Eileen Rivera Ley para el Braille Monitor del National Federation of the Blind (NFB) en 2008. Fue originalmente escrita en inglés y traducida al español por Ana Portnoy Brimmer. Pueden acceder a la versión en inglés a través del Braille Monitor del NFB.

En 1967, días después del Día de las Madres, mis padres, Edwin y Magdalena Rivera, nos reunieron amorosamente en nuestra humilde sala en 26 Siebert Place en Rochester, Nueva York, para nuestra primera reunión familiar. Éramos cinco hijes en ese entonces. Edwin casi llegaba a los seis años. Yo tenía cuatro, Sandra tres, Mildred dos y Caroline, con sus pelos rizos, solo tenía 16 meses de nacida. 

“Tenemos algo muy importante que decirles”, les recuerdo pronunciar. “Dios ama mucho a nuestra familia. Somos muy especiales para Él”. Mamá continuó, “es por eso que, de todas las familias del mundo, escogió a la nuestra para esta bendición especial. Nos ha enviado un obsequio muy especial--un angelito nuestro. Su nombre es Suzanne”.

Les niñes Rivera permanecimos sentades con asombro ante este increíble decreto. Nunca nos percatamos de la enormidad de dicha responsabilidad. Tampoco sentimos la tremenda preocupación que nuestros padres seguramente llevaban en el corazón. 

Iban contra todos los consejos médicos, trayendo a Suzanne a casa en vez de institucionalizarla. Después de todo, solo se esperaba que esta niña médicamente frágil viviera unos cuantos meses. 

Por otro lado, nosotres, les hijes, nos sentíamos como si nos hubiésemos ganado un millón de dólares. Dios nos había escogido. ¡Nos escogió para este trabajo increíblemente importante de cuidar de esta hermana muy especial! Nos juntamos con reverencia mientras nuestra madre colocaba a este delicado y frágil bebé de cinco libras en la desgastada y enorme cuna. 

En los días y años que siguieron, le dimos la bienvenida a la bebé Suzie a nuestro hogar y nuestros corazones. La arrullamos, le cantamos, hicimos todo lo posible para hacerla reír. 

El hecho de que Suzanne nació en una familia que ya contaba con dos hermanas ciegas, Mildred y yo, nunca fue lamentado. Según nuestres padres, no era gran cosa. La ceguera era nuestra única contienda y, ¿qué era la ceguera en comparación con las graves condiciones incapacitantes que enfrentaba Suzie?

Mientras nos enseñaban a atesorar a Suzanne, nuestros sabios padres nos sostuvieron a Mildred y a mi a los mismos estándares que a nuestres hermanes videntes. Teníamos que desempeñarnos bien en la escuela, aunque no pudiésemos ver nuestros libros o leer la pizarra. Insistieron en que probáramos patinar sobre ruedas, montarnos en un trineo y correr bicicleta (nunca logré aprender a correr bicicleta, pero Mildred sí). 

Siempre nos dieron una buena cantidad de tareas del hogar, como se esperaba que hiciera cualquier otre niñe puertorriqueñe en aquel entonces. Quienes visitaran la casa de les Rivera seguramente nos encontrarían limpiando la cocina, rastrillando hojas, cuidando de les niñes, horneando galletas, entregando periódicos, aspirando escaleras o lavando ropa. No había tiempo para la pena ni las excusas mezquinas en este hogar feliz y frenético. 

Lo mejor de todo es que nuestres padres nos instaban a apoyar en el cuidado de nuestra especial y pequeña Suzie, que a los diez años solo pesaba dieciocho libras. La mecimos, le dimos biberón, la bañamos y le cambiamos sus pequeños pañales amorosamente. La vestimos con su ropa encantadora, tamaño muñeca. Nunca aprendió a hablar o caminar. Nunca se pronunciaron en nuestro hogar palabras como “retraso mental profundo”, “severamente deforme” o “ciega”. Para nosotres, era simplemente el obsequio angelical más adorable que mamá, papá y Dios querían que fuera. 

Al darle la bienvenida a nuestra delicada hermanita a nuestras vidas, nuestres padres sabies nos enseñaron determinación, trabajo en equipo, gentileza, iniciativa, sacrificio personal y amor incondicional. Nos enseñaron a Mildred y a mi a mantener nuestra ceguera en perspectiva. A Suzanne (que por cierto celebra su cuadragésimo primer cumpleaños esta primavera), pero más aún a nuestres padres increíblemente valientes, sabies y llenes de fe, les agradecemos eternamente.

"Navigating Together: Empowering Blind Leaders to Lead the Way"

Can the blind really lead the blind? One of my recent experiences confirmed that not only should we, but it is the only way! 

I was asked by the Institute of International Education if I would serve as a support to a blind participant that was taking part in a program they were running. She would be pursuing a masters program at a university, which would be holding an orientation week in DC. Many organizations and government agencies run programs inviting international participants for cultural exchanges and experiences in the United States. While some programs are focused on individuals with disabilities, many are not, and people with disabilities should be able to participate in any and all programs. 

The Institute of International Education explained that the blind participant was coming from abroad and it would be their first time in the United States. I don’t think they initially realized that I was also blind. I wrote to them that I would actually be a great fit because of my blindness. The point I made to them was that as a blind person living in DC, I could do a great job of showing another blind person how to navigate the city, share tips and pointers, as well as networks and resources. I was not sure if this was going to fly with them, as oftentimes organizations prefer “sighted professionals” who will keep the blind person “safe”. (I once interviewed virtually for a teaching job that told me I was the perfect fit. When I mentioned that I would be the perfect fit as I am blind, just like the students, I was immediately told that they do not hire blind people. Yes, it was against the law. And, yes, it still happens.)

To my excitement (and surprise), The Institute of International Education agreed that I would be great for this role and we moved forward with our DC day visit. 

I met the participant, whom we will call Mia, at her hotel. She had planned where she wanted to go and what she wanted to do. However, she did not know the area at all or how to navigate it. The reality of blindness is that there is so much learning of blindness skills that is required to do basic things, such as navigating and finding new places, and it is difficult to come by such training. Likewise, many infrastructural and accessibility components may not exist in other countries, such as Accessible Pedestrian Signals (APS), whereas they do in the United States. You may have seen these around, they are the buttons that you press to cross the street and they make a sound for blind people.

One of the things we worked on was how to cross streets as we walked from her hotel to the metro station to get to all of our destinations. We talked about how the buttons work to cross the street, the different types of canes that exist, and how to cross using parallel traffic when no button is available. Our first stop was Target! There were several things that she needed in order to start her masters program. I asked her if she had ever asked for assistance in a store. She had not, she had always relied on others to do shopping for her. I explained to her that in the United States, you can go to the Customer Service section in a store and ask for a person working there to assist you in shopping. I told her I would be with her but would not speak at all. After some guidance from me on how to approach Customer Service and how it worked, she asked for assistance and learned to ask follow-up questions. In the beginning, Mia was not getting the exact item she wanted, but once we practiced how to ask more precise questions, she found exactly what worked for her. For Mia, it was a huge milestone to do this task for the first time ever and it will continue to serve her as she completes her program. We celebrated her achievement with a large lemonade! 

We also talked about how to access books, what people she might want to connect with while in D.C., and what resources are available to her. We visited the White House, did touristy things, and shared with each other how we do things as blind people. By the end of the day, we were exhausted and decided to take a cab back to the hotel, as we had been using the metro all day!

This experience reaffirmed my belief that the best people to support blind people are other blind people. That is not to take away from sighted professionals who serve a purpose and can be amazing. But nothing will ever surpass the experience of seeing yourself reflected in someone else and to learn from each other. This reminds me of interdependence. 

One of the tenets of Disability Justice is interdependence. The idea that we are not independent isolated beings, but rather, rely on each other to be a part of a community. People with disabilities have needs, as does everyone else, and we all give and take. For many blindness professionals, independence tends to be the main goal, and sometimes to the detriment of the individual. By being interdependent, we build community, trust, and strong social networks. What does interdependence look like in the real world? Interdependence in the real world looks like spending a day in D.C. hanging out, taking the metro, trying new things, and exchanging ideas!