In a Perfect World:

The Hat of Public Trust

Hard Lessons

I can remember when the toughest question I’d have to answer all day was “where did you put the scissors?” That’s not to say I faced no significant challenges, but you’d be surprised how difficult that question is to answer around my house. The day could end without resolution to that question…a week could go by. Meanwhile, life did become more complicated. I’d wrangle daily with the issues that demanded resolution as the parent of a deaf child: movies and internet sources without captioning; nobody residing at my “medical home”; school systems that were asleep on the job; the moron at the federally-funded People to People Student Ambassador Program who basically uninvited my son Dane from participation in their international program. When he (the moron) found out that Dane couldn’t hear and would require communication accommodation during the trip, this same moron insisted that the Americans with Disabilities Act only applied on U.S. soil—since this would be an international trip, The People to People Student Ambassador Program (I believe they receive federal funds and were established in 1956 by President Dwight Eisenhower) wasn’t obligated under the mandate. That’s right. I just called that person a moron three times. I’ve been waiting a long time to tell on him, and this is probably as good as it’s going to get for me. He knows who he is, and I hope he reads this column someday while living in a van down by the river. But I digress…

Show’em the Ropes

Unfortunately, not every problem can be easily solved, but Hands & Voices is all about parents helping each other find the answers to the questions that come up as we try our best to raise our children who are deaf or hard of hearing. Along the way, highly evolved professionals join us, sharing their experience and expertise. They, too, are very much a part of Hands & Voices. On any given day, a parent inquiry from Tennessee gets answered by an H&V parent leader in Vancouver, British Columbia. An Oregon mom hopes we can help her with concerns about her daughter, and in less than 24 hours she’s connected to an H&V trained Parent Guide right in her own town. Then there is the teacher who’s got a deaf student in her room for the first time in her entire career asking for guidance. She gets a direct reply from two nationally lauded teachers of the deaf, two university researchers, plus three parents who join the throng just to inspire her. In this issue of The Hands & Voices Communicator, you’ll find more good examples of how we help each other out the H&V way.

Upholding the Public Trust

A natural outcome of looking for answers and sharing them is to discover that sometimes there aren’t answers…yet. Or that the answers aren’t necessarily the right answers for all families. Hands & Voices is very likely to hear from our members (or from others in our network) who are struggling with the latter, so H&V often finds itself in the position of raising awareness about our common interests, issues and concerns back to the systems that serve us. This is a role we’ve taken on by necessity…to influence the programs and services designed to help us and our children with our “end user” perspective as parents. In this capacity, we function with a strong sense of duty to uphold the public trust. For Hands & Voices, the “public” is parents of children who are deaf or hard of hearing, our primary constituency, regardless of which mode or method of communication they use. Our commitment to representing their issues is an affirmation of duty H&V carries on behalf of our members—all of them.
We’re certainly not the only ones who wear the hat of public trust. Any agency or service provider whose job it is to provide comprehensive, equitable support and services to families should be held to a fairness doctrine. Their policies, procedures and function should be genuinely unsponsored by commercial gain, politics, communication bias, and/or any other factors that subordinate the individual needs of child (and his/her family) to any other agenda. Furthermore, no collective assumption or assertion can be made about what that individual child’s needs are.

If Switzerland Did Family Support…

Sometimes the course of duty is clear and everybody is on the same page. Other times, not so much. Those times are usually typified by lots of intense communication with our constituents who show up on both sides of the issue with equal amounts of passion for their cause. They hope H&V will endorse their position and/or strengthen their opposition. Before we learned how complicated these dynamics could become, H&V used to jump on the bandwagon whenever we were asked. Sometimes this would come back to haunt us as we joined what we perceived to be a worthy cause in sync with our mission, not recognizing that part of our constituency was not on board and was very VERY upset with us for what they felt was an act of “taking sides” against them. As this was not our intention at all, it became very clear to us that Hands & Voices involvement in state issues really needed to be in the context of the state H&V chapter. At the national level, Hands & Voices is not familiar enough with every state’s political realities, so our H&V presence must be that vetted by our members on site. That might take time, but it’s time well spent.

The H&V Stamp of Approval

Some issues have already been cleared for take off through this process. Hands & Voices is on record with our support of state passage of a Deaf Child’s Bill of Rights, the National Agenda, EHDI legislation, the COATS bill, and other issues that are connected to a national cause with which H&V has direct experience and/or expertise. Hands & Voices is confident that there is a “national consensus” on these issues that is aligned with our organizational mission and philosophy.
Obviously, consensus is not always achievable, particularly in our often fractious field. But even when agreement on issues is unlikely, Hands & Voices can still play an important part. Our involvement takes on many forms:

Anytime an H&V parent is sitting on a committee and providing thought leadership from an H&V point of view (does this idea work as well for the signers as the talkers?), that’s involvement.
Whenever a parent attends one of these workshops, s/he is preparing for meaningful, effective involvement…

Parents at the Podium
Supporting Families without Bias
The Role of the Parent Consultant
The Shaping of Systems through Parent Involvement
Parents as Change Agents
Communication Conflict Management
D/HH Educational Advocacy
A is for Access: Providing Full & Effective Communication Access for D/HH Students
and many more…

Every time someone (parent and professional alike) downloads one of H&V’s many advocacy resources from our website, or contacts us for guidance and direction, s/he is benefitting from the collected experience and expertise of a vast network of individuals who are working together to make the world a better place for kids who are deaf or hard of hearing.

“If you’re riding ahead of the herd, take a look back every now and then to make sure it's still there.” – Will Rogers

The tough question we ask ourselves everyday at Hands & Voices is whether we’re doing a good enough job. Does H&V deserve to be the leader it has become? My baseline assumption is always that we have a lot of room for improvement, but that we’ve figured out some things pretty well. Lots of people told us it would be impossible to have an organization that was unbiased about modes or methods of communication…they were wrong. We’ve been at this for almost 14 years now; our commitment to our mission has been demonstrated through a growing body of evidence including H&V chapters in over 30 states, Guide By Your Side programs in 13 states with six more in development…a website that averages 20 thousand page-loads monthly…a newspaper with a tertiary readership at 15 thousand quarterly, and so much more.

If growth of membership, lots of “deliverables” and an increase of opportunities for H&V parent leaders are any indication, we must be doing something right. At least Chresta, a mom in Colorado, thinks so and sometimes that’s the most important indicator of them all: “While flying home last night I reflected upon this weekend- as I seem to do with most things in my life. In doing this- the things that really resonated with me were WWWWWWWWOOOOOOOOOOWWWWWWWWW!!!! WOW! How did you ladies do this? How did you take something that has inhibited so many parents and families, rocked their worlds and turned it upside down until they could make sense of it for themselves alone as a family—and yet you all did this for your families and then found a way to turn it into a national and even INTERNATIONAL driving machine that brings hope, support, inspiration and life-altering assistance to OTHER FAMILIES and professionals?

This machine that has opened the doors to collaboration among not only professionals, but major organizations and universities and here is the kicker—it is really continuing to gain huge momentum…. Other states want H&V, organizations want H&V, the Deaf and Hard-of-Hearing community wants H&V. Basically the WORLD wants H&V but the single most amazingly beautiful thing about this all is that the group that wants H&V the most is the one group that is the PRIORITY…the focus has NEVER been lost: it’s for the families…. WOW! That is what I say WOW.”