The Rule of Transparency: thedeafcommunity.org

It all begins with a question: Who? 

Within the Deafhood Colorado group on Facebook, a conversation ensued after someone posted a link to www.thedeafcommunity.org, a recently established website that claims to serve the interests of the deaf and hard of hearing community.

At first glance, this website seems to be a new organization. However, upon further examination, the intent is to be set up as a "forum" of some sorts where people can engage in dialogue about topics related to deafness and as a platform to market specific programs and legislative initiatives. There's no indication of any organizational structure or that www.thedeafcommunity.org will be registered as a 501c3 non-profit organization or any other type of organization.

Several members of the Deafhood Colorado group reported making inquiries with some making contact, and others not getting a reply to their original email. Right away suspicion abounded due to the language used in the website and the nature of the replies or the lack thereof. What compounded this issue was the lack of transparency in terms of the founders not identifying themselves.

The Investigative Report

Tara Congdon and her team of researchers and IT technicians presented a narrative of the relationship between the inception of the website and current efforts to support a bill in Florida, which some organizations have stated was developed without any real input from the deaf and hard of hearing community. As of May 2nd, the video has been viewed over 6,000 times in a matter of four days.

The future status of this video remains uncertain as Congdon reported receiving a privacy complaint from Youtube. Apparently someone wanted to remain private even though their name is listed as the person who registered the domain for www.thedeafcommunity.org.

Among those who have viewed the video, the response has been overwhelmingly positive. However the majority of these responses seem to come from native signers or those who learned sign later in life. Some cuers also have expressed shock and dismay, but there is little to be heard from advocates of auditory-oral practices. From my perspective, Congdon did what any respectful journalist would have done, which is to work to expose the truth and connect dots for the general public, while giving them an opportunity to make their own conclusions.

The founders of www.thedeafcommunity.org have not yet released an official response to the investigative report.

An important point here to make is even though the video focuses quite a bit on that person's relationship due to the nature of the electronic evidence uncovered by Tara's investigative team, it is apparent there are multiple individuals involved in the development of the website, so we need to get answers on who the leaders really are.

The Big Picture

In a nutshell the people behind www.thedeafcommunity.org appear to have "strong" connections to auditory-oral practices and make the claim that the majority of the deaf and hard of hearing community speak (citing a GAO report that surveyed deaf education in the US). To date there have been no indications of whether any of the founders actually have hearing loss themselves. Furthermore, they refuse to reveal their identities, despite making the claim that they are working to provide a "rational alternative voice."

How can we trust such an organization to provide that "rational alternative voice" when the leadership is acting irrationally in regards to their lack of transparency? The following national organizations list their leadership on their websites.

NAD Board 
AG Bell Board 
NCSA Board
Hands and Voices Board

The purpose of this "organization" is listed as follows:

"Endorse activities, programs, individuals, and legislation, which foster opportunity and growth for all of the community." So how will this "website" choose which endorsements it will make? After all the website has already made one endorsement in the form of the Florida bills SB1240 and HB1391, bills opposed by the Florida chapter of RID and Florida Association of the Deaf.

Failure to Launch

There are some indications that the founders hastily produced the website and were not really prepared for the inquiries they received. Furthermore, the following is a description of what would happen if you contacted www.thedeafcommunity.org.

If interested in joining us, please visit our "contact us" page and send us your contact information. You will be e-mailed a link to a comprehensive survey and membership application. We charge no membership fee and accept no memberships from relay services or hearing aid manufacturers. We don't take organizational memberships as our mission is to be individuals for an entire community. 

To date I have not received a link to this so-called survey and a membership application. Others have reported the same results. What is the hold up here?

Nina Endler of the Deafhood Colorado group reported the following response on 4/17/2013.

"Thank you for your patience while we continue to organize and finalize the survey. We have been consumed by some recent advocacy projects across the country and are spread thin."

I wonder what those recent advocacy projects were? Why wasn't the survey finalized prior to the establishment of the website? More questions that yet remain unanswered due to lack of transparency.

Leaders or Victims? 

The founders of this website have made it clear that they wish to remain anonymous as evidenced by statements posted on their homepage. Their rationale is that there is intense bullying within the community to the point that they must protect themselves from those people.

Those people have already established themselves as victims. In today's age, there are options individuals can choose from if they feel that they are being bullied. Here are some tips for those who might feel like they're victims. What you shouldn't have to do is hide behind a website that purports to "take back" the deaf and hard of hearing community from "sign language militants" and "bullies."

True leaders put themselves in the line of fire for their followers. - Aaron Rose

Did Martin Luther King, Jr. hide behind white sheets as he marched for civil rights? Did Cesar Chavez hide behind the faces of the migrant workers who serve as an important cog in the agricultural industry? Did Harvey Milk hide behind the rainbow flags belonging to the residents of the Castro District while serving as the first openly gay politician in California? Absolutely not.

These individuals made it a point to lead by example and they have become historically relevant as leaders in their respective areas of discrimination. If the founders of www.thedeafcommunity.org want to make a positive impact on the community, then they can start by showing who they are and what kind of experience they had that led them to invest in such an effort.


The Bully File 

An interesting feature of this website is "The Bully File," a page that claims to share incidents of cyberbullying for the purpose of "outing" bullies. Let's not diminish the seriousness of bullies' behavior, but is this the best way to address those issues? Bullying often arises out of fear, ignorance, and low self-esteem and the consequences can be life or death for some individuals.

Now the website seems to make the implication that there have been members of the deaf and hard of hearing community who committed suicide because of deaf-related bullying. After some online queries, I could not find any examples of such incidents. If you are aware of such incidents, please share them with me.

There are many incidents where people with hearing loss have bullied each other, but the fact is the bullying is not limited to signers as evidenced in this blog about bullying within the entire community. Rather than "shaming" those bullies, the people behind this website should focus on ways to empower the deaf community to take on the responsibility of expanding their knowledge and understanding of the inner works of the medical-educational complex of hearing loss.

Knowledge is power, and the more knowledge and experience you have, the less likely you are to make statements which can be perceived as "bullying" or derogatory to other people's experiences. Through constructive dialogue, bullies can be turned into allies.

Organic Growth and Organizational Management  

"We discourage members from publicly posting and sharing us as our goal is to grow in awareness more organically and on an individual basis." 

The definition of organic growth is the process of expansion due to overall increasing customer base (in this case membership base), increased output per member, new sales, or a combination of those factors.

Someone needs to educate the founders on what organic growth really is and why their "business model" of growth will actually fail as a consequence of their inability to be transparent.

If the founders of www.thedeafcommunity.org really wanted to establish an organization that was "neutral" in its agenda, then it would have established a mission and vision statement, a set of by-laws for internal governance, and an organizational structure for purposes of accountability and fiscal management.

Feel free to contact me if you'd like some consulting services on how to establish a proper non-profit.

The Politics of Fear, Superiority (or Inferiority), and Contradictions

In reality, the founders of this website are buying into the politics of fear, using "bullies" and "militants" as a motivator to get people to join this website/organization.

Note the words "there is battle" going on within our deaf community. The way I see it, it's not a battle so much as a struggle for deaf people to be heard. Culturally deaf people have their own shared identity of communicating through sign language just as culturally hearing people have that common identity of listening and speaking.

In the TV Show, "Star Trek: The Next Generation," Captain Picard said it best when helping Data come to terms with his own identity.

"You are a culture of one which is no less valid than a culture of one billion."

What these so-called "signing militants" are angry about is the fact that quite a number of them lived through the experience of being told that using hands is bad and that sign language is a lesser language than spoken language. They struggled through oral education, so they harbor resentment towards those who "oppressed" them. It may be that some of those individuals have made bad choices in how they've chosen to respond to efforts made by advocates of spoken language outcomes, but it's more important to understand where they are coming from instead of continuing to antagonize them.

We banded together because many local, national and international organizations of the deaf claim to represent ALL deaf when they blatantly don't. So we decided to take our name back! The truth is that a no one speaks for the whole community. If we were to base the title “The Deaf Community” on the basis of the communication method used by the majority of deaf people, we would have to state that the deaf community prefers spoken communication.

Looking at the websites of the national organizations mentioned above, they don't make any statements to the effect of claiming that they represent ALL deaf. They make statements specific to their organization's mission, but don't go so far to say that they are the representative organization of the deaf community. Inflammatory language, indeed.

Let's just look at the entire website as a whole. What seems apparent from the language of the website is that there is an intent to establish the majority of the deaf and hard of hearing as those who speak. Well maybe they speak, but they also sign? Maybe they speak, but they also cue? Already a segment of the community feels alienated because of that kind of language.

Furthermore, let's look at the goal again.

Our goal is not to promote spoken communication or signed communication or any other form of communication, but to provide a rational alternative voice.

Seems like a reasonable goal, but are they providing a "neutral" voice?

 It is time we are honest and admit that the oral communication option has gotten the short end of the stick. 

Now it becomes evident that the founders believe that there is a systematic bias against the oral communication option just as there are signers who believe there is a systematic bias against sign language.

Groups of volunteers in multiple states are fighting every day for legislation to gain equal education access and rights for oral deaf education while other groups from segments of our own deaf community are pushing them down and working against them behind closed doors.

It's hard to believe that the founders intend to commit to their promise of "non-advocacy" for any specific communication mode or option when they make statements demonstrating a bias towards spoken language outcomes. A conundrum of contradictions, certainly.

You catch more flies with honey than you do with vinegar 

It's nice to think that there are people out there who truly want to work on ways to unify the deaf population and overcome barriers that seem to prevent the reconciliation of all wrongs that have been committed against those with hearing loss. However there is a difference between resorting to politics of fear and facilitating constructive dialogues.

What the people behind www.thedeafcommunity.org failed to realize is how important the use of language is in presenting their goal of "providing a rational alternative voice" and why transparency is so important, especially in today's age of advanced political corruption and partisanship. Constructive dialogue cannot occur if there is no transparency.

Let us consider the organization Hands and Voices. This organization is focused on supporting parents regardless of choices in communication. Their website doesn't have any negative language and doesn't identify which sub-group of the deaf community is considered to be the majority. This organization has made efforts to facilitate constructive dialogue, especially in Colorado in the form of the Inspiring Change workshops. No wonder their membership continues to grow and their state-level presence is expanding across the country.

It seems that the founders of this website have taken a narrow view of the deaf community as a whole and has chosen to focus on the element of bullying as a means of motivating people to join (the politics of fear). They've also expressed the opinion that proponents of spoken language are being marginalized while sign language is getting more support. If this is the case then how is it that AG Bell maintains solid programming in the form of biannual conventions and symposiums and a sharp website with continuous updates? It must be nice to have a national headquarters housed in a historical building in the heart of Georgetown.

Audiologists, speech language pathologists, and educators all receive training in regards to spoken language outcomes and they have their own certifications that prove they are qualified to work in their respective field. Teachers who use sign language or Cued Speech only point to their degree or training and whatever expressive assessments they have passed. They do not have a specific certification in regards to serving as "specialists" in sign language or cued language. On the other hand LSLS certification has been a reality since 2010.

In the end it is hard to buy into the notion that www.thedeafcommunity.org is striving to serve as a "rational alternative voice" on issues related to deafness based on the negative and divisive language used in the website. It may be that the people behind the website truly have good intentions, but will the signing community feel like they're accepted when they read words such as "signing militants" and "the majority of the deaf community speaks?" If their goal was to have an inclusive membership that reflects the diversity of the community as a whole, then they've already failed in that aspect.

Constructive dialogue is already happening within groups on Facebook. Some have become more accepting of others while others have learned to respect others and recognize that they need to think of a certain issue from a different perspective. These realizations come as a consequence of exposure to a variety of shared experiences, both positive and negative, but with the commonality of deafness.

The matter of the fact is there are many voices in the deaf community and we may all not agree on the same ideas, but with mutual respect and shared understandings we can have that constructive dialogue in many different forums and organizations. We do not need one website to present itself as the answer-be-all to the deaf community's challenges in trying to achieve this mutual respect and shared understanding.