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June 27 – International Day of Deaf-blindness

Flier with the following heading “June 28, International Day of Deaf-blindness”. It also has a photo of Eneida sitting in front of her piano, besides the title “Feeling through music. Interview with Eneida Rendón by Lelio Sánche”.

Feeling Through Music

 

The International Day of Deaf-blindness has been celebrated every June 27 since 1989 upon adopting the “Declaration on the Rights of deaf-blind persons” in Sweden.

This declaration was in honor of the birth of Helen Kellner, who represents a model of deaf-blind persons included into society at the time and committed to disseminate the existence of deaf-blindness and the recognition of personal, familiar and institutional implications that come from that condition.

Deaf-blindness is a unique disability with its own characteristics and needs consisting of vision loss and auditory loss. Communication of deaf-blind persons is through a tactile fingerspelling system in which most of the information is received through the palm of the hands. A distinguishing feature of deaf-blind persons is that they use a white and red striped cane to guide their movements.

At Fundación Comparlante we would like to invite you to meet Eneida Guadalupe Rendón Nieblas, a deaf-blind piano player from Mexico.

 

How do you define yourself?

As a happy and social person who likes getting along with friends. I like challenges and living new experiences, even though sometimes I am afraid of changes. I am active, I like to comply with what I intend to do, although I have to fight for it. I am happy, but sometimes I have moments of temper. I like to help other people and to learn something new every day.

When did your bond with music was born?

Since I was a child, I always listened to music. I used to like to wing what I hear whilst I was playing or doing any other activity. When I started primary school, I came into contact with musical instruments: guitar, piano, flute… I love them so much, especially the piano. I learned how to play each instrument, and I discovered that piano was my favorite since it is stunning how you control the different nuances and how many things can be expressed with my fingers.

How was the personal process since you lost the hearing until you recovered it?

When I started losing my hearing, I did not feel so bad. I was 9 years old, and my brother had the same condition. Sharing with him helped me a lot. However, my loss was gradual. When I was 14 years old, headphones did not work anymore. I could hear, but I did not understand the speaking language. That stage was very hard because I did not know anybody with total deaf-blindness personally, not even Helen Keller, to whom I knew by the books. My total hearing loss was in my teens, which is already a difficult age. I isolated myself, I did not want to talk to anyone, I took refuge in books, and I also started writing. I found it was really hard that people asked me what was happening to me and why I could not hear.    

Little by Little I got over it. I met people who helped me such as my friend Yolanda who took me to a group of teenagers from the church. I also met Etna Aguiar, who accepted me as her piano student. That was really helpful. Regardless, I have never lost the desire for hearing. For this reason, I continued investigating and fighting until I got my cochlear implant.  

How does a deaf-blind person bond to music?

I think that music is part of the day to day of humans. So, later rather than sooner, every person gets in touch with it.

Persons with deaf-blindness, even if it is total, can feel music through vibration, especially instruments with low notes. Low and middle notes are easier to feel, high notes barely vibrate.

From your perception, do you think society knows about deaf-blindness?

I think they know more now than 20 or 30 years ago. I feel there has been a lot of progress, but on the part of teaching and employment, cultural inclusion, there is still a lot to work on.  Nevertheless, this topic is treated more frequently now. The blind-deaf population has spoken up, and that is crucial. Campaigns are developed to raise awareness on deaf-blindness such as Grafiti Tejido in Mexico, among others worldwide. Such campaigns allow more and more people to know about the subject, and, since this is a rarely-heard term, they feel the restlessness of knowing more.

Which are the overall recommendations to help a deaf-blind person?

In foundations such as the Institute of Eye Microsurgery (IMO) good recommendations are provided. Some that I can mention based on mi experience and in general are:

    So that the person notices our presence, touch either the arm or the shoulder.

    Ask the communication method the person prefers.

    Address the person, not the interpreter

    Find spaces with little background noise, in case the person can hear with any device, and with good lighting, in case the person has little sight.

    Communicate what can be found in the surrounding

    When there is an emergency, such as an earthquake in which people need to move and there is unlikely to explain what is occurring, draw a large X with your finger on the back. The person will understand that he/she has to follow you and an explanation will be provided later.

 

What is the access to work and education of a deaf-blind person?

It depends on the country and even on the population or community where you live. It is related to culture, if there are well trained teachers, if the companies are able to cover their needs, and, in the work-related scenario, the abilities and capacities of persons with deaf-blindness need to be considered.

 

Although society does not fully know what is deaf-blindness, informing and raising awareness on this disability is fundamental. Therefore, today, in Fundación Comparlante, we wanted to share the statement of Eneida Guadalupe Rendon Nieblas to learn more about deaf-blindness from her daily life.

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