In this issue of The Communicator, the Hands & Voices “Deaf/Hard of Hearing Infusion within Hands & Voices” Policy document is being published for the first time. This policy is a result of H&V’s commitment and value of utilizing the unique resources that the life experience of Deaf and Hard of Hearing (D/HH) Adults brings to families who have children who are D/HH and the systems that support those families. This article seeks to explore some of the concrete aspects of this ‘infusion’ into the work that we do, as well as the core value of supporting families without bias within our organization.
In Martin Luther King’s famous, “I Have a Dream” speech, though he used the word “I” in his message, he was speaking on behalf of many people. He used the phrase “I have a dream” as a rhetorical technique to make that dream personal and authentic in the moment. His dream was not his alone, but also those thousands of people he spoke to on that day, and the generations who came before him, including people of all colors. Who is the “I” and the “we” at Hands & Voices? Individually, we are parents, professionals, community members –both hearing and deaf – who seek to unite with vision and purpose to support the journey of families who have children who are deaf/hard of hearing. Each of us, from our own “I” life experience, create a “we” that has literally taken the world by storm. We stand together as a tribe, in the simple belief that we exist to help our children reach their highest potential – communicatively, educationally, and socially.
Hands & Voices is often referred to as a parent driven, professionally collaborative organization. Our primary vision and focus is on families who have children who are Deaf or Hard of Hearing. We support both hearing parents and Deaf parents who have children who are D/HH. Our voice is loud and strong, as we speak to, for, on behalf of, and from the perspective of parents. The professionals in our organization also have a platform, and speak on behalf of families within the vision and mission of our organization. Additionally, we have parents, professionals, and community members in our organization who are also Deaf and Hard of Hearing. They also speak out from their perspective into and on behalf of the organization. These individuals in our organization bring some critical grounding and “norming” of the experience of of their D/HH life experience that cannot be found in any other place.
Recently, when a Deaf person was invited to attend a Hands & Voices event, he responded by saying, “I won’t attend that event. I don’t need Hands & Voices to speak for me as a deaf person. I can speak (sign) for myself about who/what I am.” Hands & Voices does not speak for Deaf/Hard of Hearing individuals in the sense of the often criticized experience by Deaf people who may feel like hearing people are speaking on their behalf. In fact, the opposite is probably a clearer representation of who we are as an organization. We draw from the collective ‘voice’ of the Deaf Community and individuals who across the modality spectrum have something to say to us. Hands & Voices is clear about one of its primary core values of the organization – providing nonbiased support to families. Organizationally, we understand that there are a lot of different viewpoints about the experience and ‘story’ of deafness. We seek to take these perspectives and ensure that they are reflected within our organization in a healthy and positive way within the confines of our core values, our common perspective. We believe that to some extent, our success as an organization that supports families regardless of their communication and educational choices for their child, stems from the fact that there is more that unites us than divides us. This isn’t just a theory. It is why, after fifteen years, we are only growing larger and stronger.
Check out some blogs, tweets, Facebook pages, and word of mouth information that lands on our doorstep and the fact that not all have boarded the “Hands & Voices” train is apparent. Occasionally, we are approached by individuals who are seeking to become involved with Hands & Voices with their own agenda in mind. We stand firm behind our mission and our philosophy which embodies the vision and spirit of Hands & Voices. We welcome all who embrace this vision, regardless of background or life experience. We also recognize that even though we do our best to represent the H&V philosophy, statements may be taken out of context or misunderstood when filtered through a particular individual's lense. We promote open discussion that leads to consensus, team building and trusting relationships.
Our 40+ chapters are at different stages of implementation. Hands & Voices Headquarters provides oversight and support to each chapter, and chapters provide support and modeling to one another as well. The Deaf Infusion Policy (see policy in this issue) was a result of celebrating our current achievements in what we already do in including D/HH perspectives within our organization, and also continually seeking to improve upon our model.
Hands & Voices takes seriously any accusations against individuals, chapters, and the organization of Hands & Voices. There is a high level of accountability expected at every level of leadership within the organization, overseen by a Board of Directors at the headquarters level, to ensure integrity of the core values that have created success. We will also stand and defend the integrity of the organization and all within, when attacked unfairly or without substantiation. Training, information dissemination, evaluation of current practices, and policy guidance are all in place within the structure of Hands & Voices to continue our evolution of practice. Our training takes place on online forums within the organization, quarterly teleconference calls, and our annual Leadership Conference. A new program module entitled Supporting Families Without Bias II: Living it Organizationally is under development. Guidance documents, such as ‘Facilitating Panels” is made available to all chapters to ensure that diversity of thought is represented in chapter implementation.
At almost every H&V event across the globe, participation by Deaf/Hard of Hearing adults occurs. Whether a panel presentation, or the presence of D/HH Role models, opportunities for families to gain perspectives is present. The Hands & Voices Communicator features a regular spot on D/HH perspective, as well as an entire section of the website resources section. Our Communication Considerations series features D/HH experts, authoring D/HH topics. The Hands & Voices Guide By Your Side provides opportunity for D/HH Guides.
At IEP’s across the country, parents and advocates for Deaf/Hard of Hearing children ask for communication accessible support for their children. When the issue of money comes up, we are heard to say, “I’m sorry, but under the IDEA, discussions about cost cannot be a basis for decision making”. We know schools are struggling with funding, and this is often the underlying reason why they say “NO”. We strive to be reasonable, but we don’t let the money issue stop us. We understand the value of communication accessibility and our children’s human rights to obtain it.
But what about us? In planning a budget for a project or organization, have we thoroughly discussed and put in an appropriate amount for access costs for our deaf/hh staff, board members, and community liaisons to be able to participate in our own meetings for the year? This is especially challenging for chapters with little or no money in the start-up phase. When asked about the topic of cost, one D/HH individual stated, “I know that I am the one in the room with a price tag over my head for my participation.” One Hands & Voices representative, serving on a committee and who happened to be the only hearing person, soon had an epiphany about being ‘on the other side’. This small, underfunded group had to struggle to maintain communication via an interpreter for her participation. There was a learning curve on both sides of the table. “I realized how important of a value was placed on my participation, by the group’s willingness to fund the money for me to be there. On the other hand, I did experience emotions of wondering whether I should ‘let them off the hook’, because I was costing so much money. It was the first time I understood what it sometimes might feel like when discussions of cost of access arise.” At the end of the day, providing accessibility is not just for D/HH individuals participating. It’s for every person in the room. In paying for sign language/cueing interpreting or CART access, it’s just as much for the hearing person in the room, as it is for Deaf/HH individual/s. Interpreters/access providers are the bridge of communication for all involved.
Whether you are a part of a Hands & Voices chapter striving to ensure the infusion of D/HH participation in your chapter, or whether you work in an agency or organization and following this concept, here are some words of advice from one Hands & Voices leader, Stephanie Olson, who is deaf.
“Ensuring good communication access isn't the sole responsibility of hearing people. In fact, it can be challenging when hearing people take over with their preconceived ideas and try to make access work without allowing the D/HH person to check out the situation before advocating or changing the room or whatever. The venue, size of the room, or number of people attending a meeting changes what I may need to access all communication taking place. I worked with a person that took it upon herself to "pre" notify everyone about my hearing loss in meetings prior to my arrival. When I walked into the meeting to introduce myself, I had this eerie sense that they already knew my story and I felt gypped. I appreciate the opportunity to share necessary information with the people involved in the meetings that I am a part of. This issue should always be about a partnership, just like all good communication should be. Additionally, when interpreters have been requested, communication needs to go both ways in the case of canceling or not attending a meeting. It is courteous and respectful for a deaf person to let an organization or meeting know that they are unable to attend as soon as possible. Most agencies require notification to cancel 24 hours in advance or the group will still be billed. It's not that people don't want to spend the money, but rather that the money spent serves a purpose.”
In conclusion, why does Hands & Voices feel so passionately about this topic? It can be summed up by a parent who recently wrote to a H&V Deaf leader within the organization after hearing her speak. She wrote, “I want to thank you for possibly being the one person who made me hopefully find some peace. I received the Hands & Voices Book of Choice and have read most of it. A lot of it made me smile with understanding, then I got to your story with your mother and one sentence put me in tears pretty much the whole day and who knows for how long, because I'm still tearing up writing this…I just want to thank you so much for helping me through this without even knowing. Thank you for giving me the other side of the coin I needed from an adult… Sincerely…”
Janet DesGeorges is the Executive Director of Hands & Voices. Karen Putz is the Hands & Voices Director of D/HH Infusion.
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