Deaf and Hard of Hearing CHANGEmakers

Carrie Spangler

Carrie Spangler has over 20 years of experience as a professional in the field of audiology and has a lifetime of personal experience living successfully with hearing loss. Born with bilateral severe to profound hearing loss and diagnosed at the age of 4, Carrie has worn hearing aids since her initial diagnosis. She attended her neighborhood school. Growing up with hearing loss and being the only one was both a challenge and blessing. Professionally, the personal challenges of living life with a hearing loss in the hearing world gives an insight that not all professionals are able to envision.

Professionally, Carrie has presented locally, nationally, and internationally on topics related to educational audiology and advocacy for hearing loss. In addition, she has experience in facilitating support groups with a focus on self-advocacy and transition skills.

Currently employed at Summit Educational Service Center, Ohio where she provides educational audiology outreach services. Her areas of interest include educational audiology for all students with hearing loss, teens and support groups, advocacy, and humanitarian audiology. Dr. Spangler initiated the TALK (Teaching Auditory Learning in Kids) listening and spoken language preschool program in Summit County. She also created the Hit It! program (Hearing Impaired Teens Interacting Together) which is a support group for teens with hearing loss. She currently serves as a Governor appointed audiology board member for the Ohio Speech and Hearing Professionals Board.

Tell us about your work. What is the best part of your job?

I am an Educational Audiologist. The best part of my job is being able to make an impact for families and students with hearing loss on a daily basis.

How did you get your start in the field of Deaf/Hard of hearing services?

My personal journey of living life with hearing loss created a village of professionals in the fields of audiology and speech language pathology. It was one of my audiologists who planted the seed to consider the field of audiology as a career. Once that seed was planted, I continued to grow and still continue to grow and learn in this field.

What words of wisdom can you share for families with Deaf/Hard of hearing children?

I have five tips that I have shared previously for Hands and Voices and that have really shaped me:

1. Connect your child with other children who have hearing loss, let them know they are not the only one.
2. As parents, connect with other parents! The journey is a process and it is important to share with others.
3. Talk about it! It is important that children understand how to navigate hurdles of living with hearing loss.
4. Embrace technology! Whether if is hearing aids, cochlear implants, flashing fire alarms, captioning! We live in a technology driven world so why not utilize it!
5. Let them try! Don't let hearing loss limit or define who your child is. It is a part of who they are, but it does not limit who they are!

What is the best way to impact systems that serve families with Deaf/Hard of hearing children?

Be involved and at the table!

Name a critical skill for Deaf/Hard of hearing leaders.

Being able to connect with people. Respecting that MY journey is not THEIR journey, however, in the process being open and transparent. Supporting families wherever they are on the journey. Being available when families need us.

Right now, children who are Deaf/Hard of hearing need _____?

Role models and peer models.

What is currently missing from today’s services for families with Deaf/Hard of hearing children?

I feel that many families do not have an opportunity to meet adults who are D/HH.

What is your favorite/best resource for families with Deaf/Hard of hearing children?

Hands and Voices and Hearing First. Also like the blogs on Hearing Like Me website (Phonak).

What do YOU do for fun?

Go to my kids’ soccer games, travel with friends and family, and love long walks!

Norma Moran

Norma Moran holds a BS in Professional and Technical Communication and an MA in International Training and Education. Norma works as a MD/DC H&V Parent and Deaf Guide. She is a Deaf Latina mother of three children, one CODA and two Deaf. Her professional career spans from the Peace Corps (Kenya) to the National Institutes of Health (Maryland) to Gallaudet University (Washington, D.C.) to Linguabee (virtual).

Tell us about your work. What is the best part of your job?

The Washington D.C. Area is metropolitan and diverse so as a part of the Maryland/DC chapter of H&V, I get to meet families from all walks of life. Learning from and sharing with others is a very valuable aspect of my work. Also, despite this area's enviable wealth of resources and networking proximity, there remains an information gap especially for Spanish-speaking and/or immigrant families. I look forward to creating solutions for this.

How did you get your start in the field of Deaf/Hard of hearing services?

After having my first Deaf child, I became interested in the field of Early Intervention which intensified after the birth of my second Deaf child. I wanted to learn and understand the system in order to ensure my Deaf children and others to get the best benefits from the system.

What words of wisdom can you share for families with Deaf/Hard of hearing children?

With love, support, language, and resources, your DHH child will soar!

What is the best way to impact systems that serve families with Deaf/Hard of hearing children?

Be patient but diligent, consistent, and proactive. Collaborate with more people and organizations.

Name a critical skill for Deaf/Hard of hearing leaders.

Cultural adaptability in working with hearing families who may have never met a Deaf person before.

Right now, children who are Deaf/Hard of hearing need _____?

SUPPORT that is in their own best interest, not others.

What is currently missing from today’s services for families with Deaf/Hard of hearing children?

Age-appropriate and authentic ASL classes/lessons for DHH children who may not sign or do not have access to sign. Too often the current ASL curriculum/lessons are for adults or too watered down.

What is your favorite/best resource for families with Deaf/Hard of hearing children?

Hands Land, stories from #WhyISign (for families who sign), and MD/DC H&V's Facebook group.

What do YOU do for fun?

Visiting area attractions with my family is a favorite hobby!

Jessalyn Akerman-Frank

Jessalyn Akerman-Frank is a graduate of Gallaudet University with a B.A. in communications. She also graduated from the University of Minnesota with a Masters in Special Education with a focus on Deaf/Hard of Hearing. In addition, she graduated from the Cross Road Solutions Deaf Life Coaching Program. Jessalyn is a member of the Minnesota Association of Deaf Citizens (MADC), a co-founder of Deaf Equity, and the founder of Deaf LGBTQI Annual Awards. She remains engaged and active in the Deaf Domestic Violence and Sexual Assault field by training advocates, traveling to train and educate in other states, and working with survivors through life coaching and yoga. She was awarded the Charlie Smith Award for her work in human services and the Petra F. Howard Award for her work with the Deaf LGBTQI community. In her free time, she teaches deaf yoga and spends time with her family.

Jessalyn serves on the following boards and committees: •Abuse and Neglect Specialty Committee (State of Minnesota) •Minnesota Secretary of State Disability Advisory Board •Minnesota Association of Deaf Citizens - Acting President (End of term: October 2017) •Deaf Equity - Board Member at Large •Annual Deaf LGBTQI and Allies Awards Program - Committee Member •Helping Educate to Advance the Rights of the Deaf (HEARD) Minnesota Chapter - Community Participant Member

Tell us about your work. What is the best part of your job?

I work at the Commission for Deaf, DeafBlind and Hard of Hearing. My job title is Director of Community and Civic Engagement. The best part of my job is that I work with my community. I love that I can go to work in a space that uses my language, American Sign Language or hires Interpreters. Accommodations are not an afterthought and is a required and respected right of the Deaf person. Some of the fun parts is teaching people the fundamentals of voting, how to meet their legislators, to share their lived experiences and to know that they can influence change. I love when I see individuals showing up at the Capitol on their own, feeling empowered to make a difference in their and our community. Another great part of my work is the community. Working with different organizations and community members to strengthen and build our community by coming together to talk, work through conflicts, to discuss perspectives and to support each other in achieving what we all want which is an enhanced quality of life for all who are Deaf, DeafBlind and Hard of Hearing

What words of wisdom can you share for families with Deaf/Hard of hearing children?

Know your child is a unique fabric of life, born perfect just the way he/she/they are. Know that your child will succeed. You will succeed. It is not easy for many of you to understand or foresee this optimism at first, but there are no limitations, and given all the tools, resources and embracing your whole child, he/she/they will be something you never imagined. My parents never treated me differently, they believed that I was just like their five other children and that with support, resources, and all language options, I will turn out just fine. I did. Your child will, too. Believe in that. It is not easy to navigate all the different obstacles that you may face but don't be afraid to use all the resources available to you, or to explore different perspectives, meet Deaf, DeafBlind and Hard of Hearing adults to give you the answers you need. Your child and your family deserves the best.

What is the best way to impact systems that serve families with Deaf/Hard of hearing children?

To build your network and your team. To develop your stories, to share them as the stories are lived experiences. To find people that listen and care. To work with the network, team and the people who listen and care to take steps towards influencing change. Listen to yourself, listen to your children, if something does not feel right, or you know that you and your child deserve better, know you are right. Don't give up, and just accept it because that is the way it is. Navigate channels to find the right people who will support what you believe is right for your child, and your family. There are plenty of us out there that will have your back.

Right now, children who are Deaf/Hard of hearing need _____?

To be able to access all language options. Language is the foundation to learning, self-confidence and socialization.

What is currently missing from today’s services for families with Deaf/Hard of hearing children?

The right to have all options in the school system. I feel the school systems should not decide for the child what he/she/they can have. If it is best for the child to have an ASL Interpreter, it should be given. If it is best for the child to have a language model or CDI, it should be given. If it is best for the child to use CART, it should be given. If the child requires an FM system and note taking, it should be given. Every child is unique, every child has the right to the best options for themselves. Money should not be a factor. Some children need more than one accommodation. Teens need more opportunities to learn about who they are, to learn skills that they may miss from socialization and peers, and to have access to Deaf, DeafBlind and Hard of Hearing role models. Many children do not have access to other peers who are similar to them. By not having access, there is an assumption that the child is just like the "hearing" child. This is wrong impression to give because after High School, the child will always be a child who is Deaf, Deafblind or Hard of hearing. There is nothing wrong with this but it comes with needing to truly understand their identity, their language needs, access needs etc and many times children learn that after High School when they are on their own. This can be a challenging time, a very confusing time, because we do not prepare our teens for the realties of the world living as a Deaf, DeafBlind or Hard of Hearing individual without the school system's influence. This needs to be a mandated part of the curriculum to support the whole child and their well-being.

What is your favorite/best resource for families with Deaf/Hard of hearing children?

The best resource for Deaf/Hard of Hearing children is having Deaf, DeafBlind and Hard of Hearing Teen or Adult role models. Children deserve to know that there is a future that awaits them and there are no limits to that future.

What do YOU do for fun?

YOGA. I practice Yoga, and I teach Yoga. A passion of mine that I discovered as a teen when navigating my health, my identity and my place in the world. Yoga gave me inspiration, mindfulness and a comfort that not many other things could.

Amy Crumrine

Amy Crumrine is the founder and President of CueSign, Inc. which is an organization that believes in all-inclusive community. A native cuer, Amy was told that Cued Speech and American Sign Language (ASL) did not go hand to hand. It was not until she immersed herself in the deaf community as a student at the Rochester Institute of Technology and after she got her Master's in Deaf Education, that she realized it was critical to have both Cued Speech and ASL for the whole child to have access to literacy and  a healthy social/emotional development.  CueSign, Inc. is a thriving community who interacts and socializes with other peers and engage in rich and fulfilling discussions on bilingualism, advocacy, and being part of the deaf community.

 Amy has her own business, Crumrine Communications, in which she also consults with various school districts all over the country and provides support, resources and mentorship to deaf children and their families. She has given workshops and presentations on how both Cued Speech and ASL can work together. In addition to this, she is a Cued Speech online instructor at Gallaudet University and a high school ASL teacher. She is passionate about making sure families and children are given opportunities to gain access to literacy and deaf culture.

Tell us about your work. What is the best part of your job?

I am an ASL teacher and an online Cued Speech instructor. The best part of my job is working with students to show them the beauty of the various ways deaf and hard of hearing people can communicate.

How did you get your start in the field of Deaf/Hard of hearing services?

My mother was a teacher for the deaf. I also enjoyed working with deaf children growing up. I got my Masters in Deaf Ed from the National Technical Institute for the Deaf in Rochester, New York.

What words of wisdom can you share for families with Deaf/Hard of hearing children?

Right now, things may not make perfect sense. For now, smile through the confusion, smile through the tears, and remember that being open to all options and loving your child unconditionally will lead to an end story that makes perfect sense.

What is the best way to impact systems that serve families with Deaf/Hard of hearing children?

Reaching out to school districts, medical professionals, parents, organizations and giving workshops.

Name a critical skill for Deaf/Hard of hearing leaders.

Patience and open mindness

Right now, children who are Deaf/Hard of hearing need _____?

Deaf and hard of hearing role models in a positive light.

What is currently missing from today’s services for families with Deaf/Hard of hearing children?

More resources for medical professionals and not enough opportunities to present in school systems.

What is your favorite/best resource for families with Deaf/Hard of hearing children?

CueSign, Inc.

What do YOU do for fun?

I enjoy doing puzzles, taking walks, and reading books.

Rebecca Novinger

Rebecca is the Chief Executive Officer of Imagine!, a nonprofit organization that serves individuals with intellectual and developmental disabilities in Colorado. She has nearly 15 years of experience working for different nonprofit organizations in Pennsylvania, Maryland and Colorado with responsibility in areas of program development, business intelligence, and corporate strategy. In 2016, Rebecca was the recipient of the Bizwest Boulder Valley 40 Under 40 award recognizing upcoming leaders in Boulder county. Rebecca received her Master's Degree in Health Systems Management from George Mason University and her Bachelor's Degree in Psychology from Penn State University. Rebecca is profoundly deaf and grew up using American Sign Language with bilateral hearing aids while mainstreamed in the public school system. In her twenties, she received cochlear implants. Rebecca enjoys volunteering with her church and most recently completed two years as the Coordinator of her local chapter of MOPs. She and her husband of 14 years have two children and enjoy sharing their love of the outdoors with them.

Tell us about your work. What is the best part of your job?

Most of my time is spent trying to influence local and state policy so that people with intellectual and developmental disabilities have the best community based supports possible. This is important, necessary work that often involves spreadsheets, talking points, and brainstorming sessions with very smart people. So, whenever there is an opportunity to hang out with people who receive supports from Imagine!, I seize it. It is so much fun to visit our residents in the group homes, play with the toddlers at our Early Intervention programming, and hang out with the guys taking classes through our employment services. These are the moments that fuel me to work hard every day.

How did you get your start in the field of Deaf/Hard of hearing services?

I don't work in the D/HH industry today. However, I did work for a nonprofit serving this population for about four years. I learned about that organization while completing my graduate program practicum.

What words of wisdom can you share for families with Deaf/Hard of hearing children?

Role model for your children the words they should use when talking about their needs. Your children will spend years watching you negotiate with the school district, talk with the audiologist, work out playdates with friends, etc. etc. Strong, affirmative words that send clear signals that your children are worthy of every opportunity in life will make a permanent, lasting impact.

What is the best way to impact systems that serve families with Deaf/Hard of hearing children?

Never assume the first answer you get is the final answer you'll receive. Ask questions, understand the resources available to you, study your legal rights. In other words, be informed and be involved. Assume ignorance over ill intent if you are dissatisfied with your level of support.

Name a critical skill for Deaf/Hard of hearing leaders.

Self-advocacy has propelled me to where I am today. This includes the ability to precisely and assertively communicate any accommodations necessary to fully access a listening environment. Equally important is the courage I've developed to remind my peers of what I need in order for me to be a full member of a team and have a full seat at the table.

Right now, children who are Deaf/Hard of hearing need _____?

...to maximize the technology options available to them to ease communication barriers in and out of the classroom. (This can include everything from apps on a mobile device to universally accessible technologies like closed captioning on a television).

What is currently missing from today’s services for families with Deaf/Hard of hearing children?

I'm not plugged in enough with this group to offer a qualified opinion!

What is your favorite/best resource for families with Deaf/Hard of hearing children?

Hands & Voices, without a doubt, is a fantastic lifelong resource.

What do YOU do for fun?

I love being active. My favorites include running and practicing yoga. I'm also a roller coaster fanatic and when I have a free afternoon, my daughter and I can be found riding the biggest, fastest coasters in town!

Benjamin Lachman

I was born profoundly deaf but wasn't diagnosed until I was just over a year old. At the recommendation of the first experts they met, my parents started out learning sign language but pivoted to Cued American English after they determined that was how they felt most comfortable being my first and best language model. After several years of early education with access to direct instruction in English via Cued Speech, I transitioned to a mainstream setting with a Cued Language Transliterator in second grade. Under that language accessibility paradigm, I went on to achieve a Bachelor of the Arts in English and a Masters in Business Administration. I now have twelve years of digital marketing experience and I am currently a Community Manager for Fresh Content Society with a portfolio of clients that includes major international brands. I also currently serve as the Vice President of the National Cued Speech Association, which works to advocate on behalf of families, deaf or hard of hearing adults, and interventional professionals who need or want access to visual communication via many different cued languages.

Tell us about your work. What is the best part of your job?

I'm working for Fresh Content Society as a Community Manager for several major brands. It has taken some time to find a position that optimizes both my expertise and my communications needs but I believe I've hit the sweet spot. The best part is simply getting out there and building value on behalf of clients who are in turn very satisfied.

How did you get your start in the field of Deaf/Hard of hearing services?

Shortly after I graduated from college in 2005, I decided to join the Board of Directors for the National Cued Speech Association so that I could give back to the infrastructure that helped enable the support system that I was fortunate to have. I wanted to ensure that other families and other children who are deaf or hard of hearing had access to the language exposure that they needed.

Over time, I held several positions on that same board and, through that work, gained a deep understanding of the deaf and hard of hearing ecosystem.

Through firsthand experience, through my parents' eyes, through my deaf peers' eyes, through the eyes of the professionals with whom I've worked, and through my work with the NCSA and other organizations, I have a unique perspective on the educational and interventional landscape that a lot of different people are working with.

The more I see and learn, the more I want to be involved because it's a pretty compelling need.

What words of wisdom can you share for families with Deaf/Hard of hearing children?

Your first step after you've absorbed the news is likely going to be the development of your support system. Our industry is not yet enlightened enough to be as easy for you to navigate as it really should be. There are signs that we're heading in that direction but for now, there are three important things to remember:

1. The fact that you are the person or people who is/are responsible for the decisions that affect your child. Many people will try to tell you what you should or even what you must do but the law is on your side.
2. Every parent has a responsibility to raise their child the best way they know how and each child is different. Your responsibility happens to include a question that many other families won't even think about and that's how to ensure that your child has access to language and the modalities to communicate with those languages. In fact, there are several options for you to choose from, which includes choosing to pursue multiple paths simultaneously or one thing at a time. Don't let anyone tell you one thing is right and another is wrong because only you have all the facts at hand as they pertain to your family.
3. The unique responsibility described in #2 includes the fact that some work is involved. Intervention is required, one way or another, and you are the captain of the intervening team. Once you choose your path or paths, you have a responsibility to participate fully in those efforts.

For example, if you choose to implant your child, learn how to work with your child at home on listening and spoken language. If you choose to have your child's first language be American Sign Language and to expose them to the ASL community, dive right in and become a part of it yourself. If you choose visual access to the language of your home via Cued Speech, learn to cue as quickly as possible and then cue anything you say, with or without voice.

Bring other members of your family into the conversation and ask them to be language models for your child as well. One of the hardest parts of this journey may well be the realization that your family's communicative status quo is changing. But all of these efforts are designed to do one thing; give your child as much access to language, and consequently all of the things you can do with language, as possible.

It seems like a lot and it is but there are countless people who can serve as your support system and all you have to do is seek them out and determine how they most appropriately fit within your family's needs and wants. Use them.

What is the best way to impact systems that serve families with Deaf/Hard of hearing children?

Hold each and every one of us accountable for serving you first. If our bias shows up and we start to think beyond just your family's needs, recognize it and ask us to serve you without bias. Our expertise and bias must be separate from one another when it comes to serving you so when you recognize manifestations of bias, call them out.

Participate in those systems yourselves. Too many people complain about systems without getting involved in being the change themselves so the best and most effective way to impact the system is to become part of it and hold it accountable to the values you hold. That can be either joining a local chapter of an organization, founding one if there isn't one in your region, or fundraising for those in your area. It can also consist of informing and educating our lawmakers who are responsible for funding and regulating the state and federal resource infrastructures. It can consist of holding school systems accountable to IDEA. There are far too many assumptions that are far too easy to make, such as that there's just one kind of Deaf person, so it falls upon all of us to be visible and to inform.

Once you find yourself in a stable position that you're satisfied with, check to see who's behind you and offer them a hand. Find peer groups to work with, both for yourself and for your family members who are deaf or hard of hearing.

Name a critical skill for Deaf/Hard of hearing leaders.

Each and every one of us has to be able to have a conversation with people who might disagree with us and find common values. Anger must take a back seat to progress and progress has to be shared equitably.

Right now, children who are Deaf/Hard of hearing need _____?

Access. To services, to language, to education, to technology, to society, to deaf adult mentorship, to peer groups, and absolutely most importantly, to their own families.

What is currently missing from today’s services for families with Deaf/Hard of hearing children?

Geographical equity. Right now, the kind of services you receive and the quality thereof, as well as pre-existing bias, is largely dependent on where you happen to live. Too many parents are put in a position to have to move in order to receive the services they most want for their child, otherwise they have to compromise and that's completely unfair to both their children and themselves.

What's also missing is a deep and practical recognition by school districts that each child and family is unique. Too many districts right now approach the IEP conversation with the question of, "how can we avoid legal concerns," or, "how can we convince this family to be satisfied with the resources we already have on site?" Even when an IEP team is committed to an inclusive approach, too many are still constrained by a limited number of resources within their jurisdiction and the barriers to increasing or diversifying those local resources are far too high.

And finally, one other thing that's missing is a level of trust within an ideologically diverse community, whether it's people who are deaf or hard of hearing from different backgrounds or people within a profession. Without being able to trust that we all want a positive outcome for families and their children, we are not able to bring each other into conversations where we think they might be helpful. That distrust only serves to deepen and perpetuate those geographical inconsistencies within the services infrastructure.

I feel that we should always be working towards a more perfect ecosystem that serves as many people as possible from as many backgrounds as possible so there will always be work to be done. As my Mom once quoted in a letter she gave me just before she passed away, "it's not incumbent on us to finish the work but neither are we free to desist from it all together."

What is your favorite/best resource for families with Deaf/Hard of hearing children?

I'm personally biased (I know, I just told you a moment ago to hold us accountable to our biases) but I love working with the National Cued Speech Association and our respective affiliates. One of my favorite activities is going to weekend family support and networking events, affectionately known as, "Cue Camps." There, you meet other families as well as the professional support systems that helped them get where they currently are. We also have a very active Cued Speech Facebook group where answers, feedback, and suggestions about cueing are easy to find.

I am a massive fan of Hands & Voices because of their mission of building out support system infrastructures in every location possible that are inclusive of all backgrounds, languages, and modes of communication. They then offer information and resources without bias to parents who are just embarking on their own journey. Through Hands & Voices, I have been able to meet other people who are deaf or hard of hearing in an environment that allows all of us to work together in a positive manner, regardless of our background, identity, or family's choices made when we were children, and that's unique to our shared ecosystem at this point.

What do YOU do for fun?

Watch my own toddler grow up. It's ridiculous how fast our children go from potato mode to actual people and it's completely mind blowing to watch them learn and grow.