By Maggie Casteel, MS, CRC, LPC

Maggie is a late-deafened adult and long-time member of the Hearing Loss Association of America. Maggie is a passionate advocate for assistive technology, inclusion and universal access. She currently works at the VA Pittsburgh Health System as a Vocational Rehabilitation Specialist.

Reminders of the ongoing War on Terrorism are almost subtle compared to the prolific ‘noise’ surrounding the Vietnam Era. But Warriors are returning every day with intense needs. They deserve to come home to the peace they have fought to protect. Unfortunately, as so many of us know, there is little peace for a person learning to live with tinnitus and/or hearing loss without support, education, understanding and technology.

For the first time in many of our lives, we as a community have the unique experience, training and ability to make a difference. Our call to action becomes louder and stronger with each day.  We must respond as a community and begin today to be the catalysts for the re-integration of countless service men and women with service related, acquired tinnitus and hearing loss. We can bring an invaluable contribution to help them find peace.

When loud becomes too loud most of us have the opportunity to either escape the cause of the noise or wear hearing protection, not so for countless service men and women.  Although all branches of military service are aware and constantly striving to protect the hearing of our service members, often the choices are not feasible. Soldiers depend on their ears for information and security. As a result, Hearing Damage is the number one disability in the war on terrorism, according to the Department of Veterans Affairs (VA). Some experts say it could take decades before the true toll becomes clear. Nearly 70,000 of the more than 1.3 million troops who served in the two war zones, Afghanistan and Iraq, are collecting disability for tinnitus.  What’s more, more than 58,000 veterans are on disability for hearing loss, according to the VA.

The National Institute for Occupational Safety and Health (NIOSH) reports that exposure to any sound above 85 decibels may cause hearing loss. Your hair dryer or power mower is commonly measured at 90 decibels, a jet engine take-off at 140.  Service men and women can be exposed to sound levels of much greater magnitude – heavy artillery, rockets, battle tanks, aircrafts and ships are part of their everyday listening environment. An F-16 fighter jet can generate over 150 decibels of noise at take off; an M-16 rifle can create up to 157 decibels; a shotgun blast can register at 170 decibels; and roadside bombs can start at 183 decibels. These soldiers don’t have the luxury of excusing themselves during combat to put on hearing protection.

Historically, wars bring medical innovation, better prosthetics and technological advances in rehabilitation. This war is no exception. We will all benefit from state-of-the art research in hearing assistive technology developed to mitigate tinnitus and remediate hearing loss for our service members. However, the greatest goal in rehabilitation is re-integration into the community, coming home. These men and women will be well cared for by the VA, but the VA is not home.

If you are born with a disability, or become disabled in some way when you are young, you have the advantage of understanding your needs, developing tools and accommodations that grow with you and your life. You are consistently identified as a Person with a Disability requiring specific accommodations. You have control over your own level of empowerment and autonomy.

If you acquire a disability as an adult you suddenly become a member of a club you never wanted to join, and further, you don’t know the bylaws! Returning veterans with tinnitus and/or hearing loss, with or without physical injuries, face a circuitous journey through a puzzle of support systems. As persons with invisible disabilities they struggle with disclosure issues and exaggerated denial, but as soldiers they cling to a military culture that provided them a clear path with designated tasks and outcomes. In short, they don’t know how to be disabled. It is the single most important adjustment they face.  For those of us who serve veterans, it is the quintessential challenge for returning these veterans to an acceptable quality of life that can include re-integrating into the workforce and community. For those of us living with hearing loss it is a call to action.

This veteran has many deserved entitlements, but he or she is also entitled to the same rights as every other Person with Disability – “Nothing About Us, Without Us.”  Without the ability to self-advocate, without the awareness of appropriate and legal environmental accommodation and assistive technology, this soldier is disempowered and handicapped not by a disability, but by a lack of awareness and support.

The ultimate goal for any person in rehabilitation includes educating the individual and his/her family about how to remain independent in all environments, how to access support groups, how to acquire and utilize technology to remediate identified and anticipated needs to achieve maximum functionality, inclusion, re-integration into the community, school and work – going home. Helping the warriors who fight the Global War on Terrorism requires an active connection between the veteran and the community. But how do we make this connection?

This is where our personal and cumulative experience living with hearing loss will help. We can bring solace, camaraderie, inclusion, support, solutions and true empathy. It’s simple; we can begin today, right now and make it our mission to welcome veterans and their families into the hearing loss community. Challenge yourselves to find ways to reach out to these veterans. Commit yourselves to being the part of the solution.

I’ve started a list of challenges for veterans with hearing loss. I challenge you to add to it. Identify an issue and resolve to find ways to make the hearing loss community a peaceful way home for our veterans.

• Denial: Lead by example. If ever there was a good reason for you to make your own return from that River in Egypt it’s now! How can we expect veterans to disclose if we are not comfortable doing so? There is no time for shame and stigma concerning hearing loss in any of our lives. Veterans need our support now, and they need to be able to identify us in order to access that support.
• Fear: My first emotional reaction to my hearing loss was sheer terror.” How can I resume my life now that I can’t hear? How can I re-connect with my spouse, my children, my parents and friends? They can’t possibly understand what this is like. I look the same; they think I’m still me.” Make sure that veteran and his /her families don’t feel alone in their journey through hearing loss. Have a special picnic in a quiet place to begin to introduce veterans with newly acquired hearing loss and their families to alternate forms of socialization that allows for attention to communications challenges. Give them a place and a chance to be in a place that’s safe and comfortable.

Your turn!

ASL Spoken English

Domestic Violence has always been a problem in the Deaf community. For many years it has been a hidden problem, secret and taboo. It happened behind closed doors. It was treated as a private matter between two people and the community should not get involved.

We know now that we cannot afford to let it stay private. It is everyone’s business. We must all be a part of the solution. Domestic Violence is a community problem that requires a community solution.

For almost 25 years, Abused Deaf Women’s Advocacy Services, ADWAS, has worked with Deaf victims and survivors, and we have learned that domestic violence can happen to anyone, anywhere. It ignores gender, race, class, sexual orientation, educational background, ability, borders, religion, and any other kind of label.

We also know that Domestic Violence is not just physical. It can include emotional, financial, spiritual and many other forms of power and control.

What can you do if someone you care about is a victim of domestic violence or sexual assault? Listen. Believe them. Tell them it is not their fault. Respect and judge their decisions. Remember that they are the experts of their experience and know their situation the best. Offer them resources and encourage them to talk to a domestic violence or sexual assault advocate.

What can you do if you experience domestic violence or sexual assault? Tell someone. Keep telling someone until they believe you. Know that it is not your fault and you are not alone. Get help. Talk to a local domestic violence or sexual assault agency. Contact the National Domestic Violence Hotline and ask if there is a Deaf domestic violence or sexual assault program near you.

What can our community do?
Talk about it. By discussing the problem, we send a powerful message that we know it is going on and it will no longer be tolerated.

Don’t blame victims. For too long we have asked questions like: Why does she stay? Why doesn’t she leave? Why did she go back? Instead, we should be asking questions like why does he do that? And how do we stop the cycle of violence.

Educate ourselves and others. We need to understand the problem of domestic violence and sexual assault before we can begin to work towards solving it. Hosting workshops and giving performances and plays are just some of the ways bringing awareness to the community.

Focus on the systems. There are many barriers for Deaf victims in the medical, legal and emergency systems. We must work to remove those barriers so that there are lasting system changes. We also need to work with hearing providers in this field and build allies so that they understand that Deaf victims have unique needs.

Create new programs and services. By providing services that are culturally based, Deaf and ASL-centric, we give Deaf survivors a tangible and effective alternative to traditional, mainstream programs that have long been inaccessible for Deaf.

Sometimes people ask ADWAS staff how we survive doing this work. And we try to explain that it is powerful to work for change. And it is empowering working within our own community to end the cycle. But more than that, working with survivors who have experienced physical, emotional, sexual and financial abuse and seeing their strength, their ability to endure and begin to heal, we see that it is possible. Not only is it possible, it is imperative.

This work of trying to end the cycle of violence is not easy or simple. It will not happen overnight. But we must try. And although we know the road to healing is long, together, with the community involved supporting victims and survivors and by creating new programs and services for survivors, our community can begin to heal.

Three new links related to domestic violence have been added to the useful links section related to domestic violence.

- The Pennsylvania Coalition Against Domestic Violence (PCADV) is a private nonprofit organization working at the state and national levels to eliminate domestic violence, secure justice for victims, enhance safety for families and communities, and create lasting systems and social change.

PCADV coordinates these efforts with its statewide network of programs, which provides 24-hour emergency hotlines, shelter, counseling, legal advocacy and representation, healthcare-based advocacy, childrens programs, transitional housing and many other free and confidential services. The agency does not specifically provide services to the Deaf or Deafblind but will assist you in finding resources in your area.

- Abused Deaf Women’s Advocacy Services (ADWAS) provides comprehensive services to Deaf and Deaf-Blind victims/survivors of sexual assault, domestic violence, and stalking. ADWAS believes that violence is a learned behavior and envisions a world where violence is not tolerated.

ADWAS was founded in 1986 and is located in Seattle, Washington. The ADWAS model has been replicated in 19 Deaf communities across the United States. A list of resources and contacts where services that are specifically designed for the Deaf can be found on this site.

- The Office on Women’s Health (OWH) was established in 1991 within the U.S. Department of Health and Human Services. Its Vision is to ensure that “All Women and Girls are Healthier and Have a Better Sense of Well Being.” Its mission is to “provide leadership to promote health equity for women and girls through sex/gender-specific approaches.” The strategy OWH uses to achieve its mission and vision is through the development of innovative programs, by educating health professionals, and motivating behavior change in consumers through the dissemination of health information.  State contacts where resources can be found about domestic violence can be found on this site.

Wellness as it relates to hearing loss can take several different forms, especially when it involves a parent caring for, and makes decisions on behalf of, a child.

First, peer and family support can be critical in reducing stress and supporting mental wellness. Support groups are often run by schools and centers which focus on helping people with hearing loss. In addition to offering empathetic listeners and expert speakers, support groups also foster discussion which can help solve problems and remove stumbling blocks. Other parents who have lived through the same problems are best positioned to provide practical answers to frustrating situations like keeping hearing aids on little ears, lobbying insurance companies, and influencing decision makers at the school district.

Open and positive relationships with professionals such as doctors, audiologists, speech therapists and teachers are also crucial in supporting the wellness of a child with hearing loss. Parents of children with hearing loss are thrust into the difficult role of helping to monitor and report on how well a child is hearing and communicating in diverse situations. Parents are with the child most often and are in the best position to observe them and convey information between professionals. These exchanges of information may lead to critical discoveries which enable a child to hear and ultimately communicate more effectively. It is important to keep notes and share any information that could be relevant. For example, something subtle seen in a speech session, could enable an audiologist to detect a progressive loss.

The role of a parent of a child with hearing loss can be daunting, but many resources are available. Various resources are available through schools and audiology clinics. Online resources are also available. The more people a parent has on his or her side, the more manageable the climb!

Article written by Hadley Haas