Deaf America Syndrome

At first glance my blog title may sound like something of a disease or a condition I'm trying to infer. A disease or condition that afflicts Deaf America and that being Deaf or a person who is culturally deaf is an affliction. An anomaly. A contagion. Something that needs to be cured or fixed. We also hear the word “syndrome” almost daily. We hear about people with Down’s Syndrome, Carpal Tunnel Syndrome, Chronic Fatigue Syndrome, Shaken Baby Syndrome, Munchausen Syndrome by Proxy, Rubella Syndrome, and so on and so forth. All of them deal with the negative connotation as being a disease or condition of some sort in association with the word “syndrome.”

You as a reader might be hastened into thinking that this blog entry is nothing but negative things about Deaf people, Deaf culture, and the Deaf community in America. Not so. It is not my intention to present wholly negative viewpoints just for the sake of it but more accurately an attempt to provide a more equitabe and balanced look. Questions need to be answered and how our perspectives view things differently from many different angles.

Now, if we look at the definitions of the word “syndrome” we can see that it has primarily two meanings. From the medical definition it is defined as “a group of symptoms or signs that appear together and that tend to indicate, with some consistency, the presence of a certain disease or other condition.” From a non-medical point’s of view the definition of “syndrome” is defined as “a complex of concurrent things.” This blog entry, “Deaf America Syndrome,” is about the complexities of concurrent things that meshes together with the pitting of ideas, concepts, and long held mythical beliefs between hearing, deaf, Deaf, and hard of hearing people in America. Nothing about illness but the complexities that we see and experience today.

The issues Deaf people in America have to deal with involve all of their own complexities and idiosyncrasies, including how they feel about hearing people, deaf people with cochlear implants, late deafened, or people who are hard of hearing and wear hearing aids. Many people do not always see things as other people do. Of course, this is how people behave. Our perspectives are different about life and of each other. Some perspectives are negative while others are positive. Some people refuse to acknowledge certain things in life thinking it's all a conspiracy, while others simply accept it as a given and seek better ways of doing things. Some steadfastly stick to their words until one day something dawns upon him/her and do an abrupt but humbled 180 degrees turn on their opinions or beliefs. Deaf America has its own true richness in life combined with the unique cultural upbringing that cherishes Deaf family support and friends. People try and lead a good example for others to follow but everybody stumbles along the way. We have the good, the bad, and the ugly in America when it comes to diversity and perception issues. People cannot simply ignore these things and we must face these things head on instead.

Diversity Issues.

When diversity is lacking you would know it right away. So, in the case of the blog aggregator business the best way to assure diversity is to first make sure that you have an example of that diversity in place. For a start, you have a group of people who contribute and maintain an aggregator site that exhibit that very same diversity make-up with those on the outside. Otherwise it’d just be a political tool in the attempt to claim the “diversity” label when it’s really not the case. Such an example of this may be in the form of a group that promote Deaf-centric values but do not reflect the same diversity mixture to those on the outside. Ideally, for a group of people to reflect that diversity mix would be a “cuer,” a person who is Deaf, a person who is deaf or hard of hearing, a person who is hearing and have a relationship of some kind to somebody who is deaf (e.g. hearing parents of a deaf/hh kid), CODA, late deafened, a deaf person who wears a cochlear implant and so on. Though philosophies may differ in the area of language or communication but you have a diverse group of people who share a common ideal and bond on the need to communicate with each other regardless the preferred mode of communication method. You may have people, for example, who know how to sign (e.g. SEE, ASL, PSE, BSL, FSL), those who do not know how to sign and do not want to sign, those who prefer to talk and listen only, or those who prefer to use cued speech with their talking. Each person has his or her own personal value when it comes to their hearing loss whether it’s a Deaf-centric one or not. Deaf-centric value does not take center stage on Deaf Village but is seen as an equal among other values that deaf and hard of hearing people share.

No one aggregator site is an island.

This latest incident about DeafRead (and here) reminded me of a time when people began abandoning Deafnotes several years ago for a variety of reasons. Former members began to design their own online forum websites and the net result was a noticeable shift by those who felt uncomfortable or disgusted to join these new forums. Others left and joined new forums because moderators were less heavy-handed and more neutral on allowing new members more freedom to discuss various deaf or non-deaf related topics. This includes less fear of getting booted or locked out of a discussion forum for political or apolitical reasons. The reasons for leaving or joining other deaf or hard of hearing website forums are many but in the end there are now more deaf and hard of hearing related forums that it was several years ago. And today we see many Deaf, deaf and hard of hearing related forums.

Now, for the aggregator business it is a niche business by catering to a particular subject for blogs to be aggregated. And there are just a few of them right now. But just because an aggregator website has a niche subject such as deafness to choose their blogs from, it isn’t necessarily enough sometimes. There can be this perception issue in regard to an aggregator site by those who run it. A perception by those on the outside who may see one aggregrator site as a wholly Deaf-centric and Deaf-controlled aggregator site that mostly aggregates Deaf blogs rather than a site that promotes true diversity while trying to fullfill and keep to the loyalty factor to their mostly Deaf bloggers.

And then we have those damning myths or half-truths where parents of deaf/hh children, older deaf/hh people and the late deafened from young kids who have lost their hearings to older adults who may view Deaf people as living in an insular Deaf bubble world. And why would they see that? Well, it only takes a few examples to help propagate those myths or even half-truths (and some cases wholly true) on a continuing basis where bloggers may end up on not wanting to be associated with a particular blog/vlog aggregator website simply for that reason whether it's true or not. It's the perception and the various myths, half-truths and truths that drive their decisions.

Take one particular example of a Deaf leader who represents the editors or moderators that help run an aggregator site. The leader may claim the “diversity” mantle by pointing to the fact that there are many aggregated blogs from bloggers who are deaf, Deaf, hard of hearing, deaf/blind, cochlear implant users, late deafened, deaf and blind, cuers, or those who wear hearing aids while each of them have a different and preferred method of communicating. And that would be fine. But then this picture gets a little skewed and wanting when, for example, the leader refuses to include subtitles in his/her own video blog but signs only. Now, would the average person believe this Deaf leader’s claim of diversity when he/she refuses to add subtitles in the first place on the basis of not destroying the “purity” of ASL signing? Since there are 30 million people with hearing loss you’d have about 3% of that population that can understand ASL well enough but to actively engage to exclude the rest of the population is not a sign on acceptance or the embracement of diversity in totality. Lead by example is the heart of this question.

All this becomes a Deaf-centric, Deaf-loyalty issue and not about the firm belief on diversity when it gets down to the core issue of communication access for all. This is what Deaf Village, a blog aggregator site, is set out to do and that is to embrace diversity, promote tolerance, provide common sense ideals in regards to communication access and the proper respect to bloggers who do share those common core beliefs.

Granted, this is a long discussion on “diversity” but it was necessary to put these thoughts down. I am sure there are millions of deaf and hard of hearing people who will share the exact same sentiments as mine. There is no doubt about that. We don’t strive to live in a bubble or insular world but to become a world where everyone can be a part of by welcoming one and all. After all, we all share the one common theme and that would be hearing loss and communication access.