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Deaf People of the Year

Jodee Crace

Advocate for Deaf children’s language rights

Adapt. Resilience. Acceptance. Celebrate!
“These four words are what continue to be shown on my signature on every AOL email I send. Being a reflective person that I am, I look back to the experiences as a Deaf child of hearing parents, being educated at a residential Deaf school, attending a university for Deaf people, and having careers that contribute to healthy outcomes of Deaf people, these four words—Adapt, Resilience, Acceptance, Celebrate! are what consistently remind me why I’m always on the move.”

So writes Jodee Crace, a tireless advocate for the language rights of deaf babies and children.

She has happy memories of being the middle child in an almost all-hearing family, spending holidays , playing games, and taking summer vacations.Een though her parents didn't sign (something they regret not learning), there was bonding.

"My education began at the Indiana School for the Deaf (ISD) at age four (1963-1979) which contained early auditory and spoken communication at the primary years, and then a mixture of total communication and basic American Sign Language (ASL) during the middle-high school years. During my social-emotional development and growth with Deaf peers, American Sign Language was the primary modality - that was liberating in my thought process. However, when it came to playing with my siblings, neighbors and cousins back at home, it was gesturing, lipreading, and simple speech. Weekends were filled with kickballs, 4 Squares, hanging out on the front porch, riding bikes, and walking to the library."

Jodee's sister Janis, her elder by a year, had moderate hearing levels, but was directed to the oral track. Julie, her elder by three years, played school in the kitchen, and coached her in English and math; in turn, she taught Julie ASL. She also has a younger brother, Jim, and "baby sister," Jennifer. Having a younger brother was a useful experience in her parenting four sons. "When I was a cheerleader at ISD's high school Jennifer usually came to the home games and cheered alongside us cheerleaders. That meant a lot to me and it was a joyful time. Finally, my experiences in the dynamic of family structure within my family and others’ sparked my curiosity in the whys and hows such behaviors and decisions were made, including how I’d parent my four sons and being a partner with Rusty, my husband in co-parenting."

Jodee met Riusty at Gallaudet. Although he was from Kentucky, he had ben sent to live with his paternal grandparents in Maryland so he could attend MSSD; he was raised s an "only child."

"Our family experiences were way different, yet we've connected throughout." They married in 1984. "That wedding was very memorable, because it was a very first large event where both hearing people and Deaf people had to celebrate (and party) together within my family. Music was loud, food and drinks were plentiful, and communication was ‘to each one’s own’ (which was the song I ASL-presented to Rusty at the wedding reception).

”Rusty is well known in the Deaf Community as an athlete, coach, educator and mentor to many students he had taught at the Indiana School for the Deaf for 28 years. Many of theseformer students still stay in touch with Rusty. I’d say that Rusty is my perfect equilibrium (yin-yang) because of his clear stand on many issues and my being sensitive and uncertain.”

Jodee and Rusty, getting genetic counseling at Gallaudet before their marriage, were told that they had a 25% chance of having deaf children. While she was juggling graduate school and a full-time job at Gallaudet, living in subirban Washington, they had their first son, RJ. They were joyful, but when he was 8 weeks old, he was diagnosed with retinoblastoma, bilateral eye cancer. "The unexpected shift came into our lives with his diagnosis." One eye was removed immediately, and radiation and chemotherapy were commenced for the other eye, while "trying our best to raise RJ as joyfully as we could, as new parents. However, the cancer persisted and the remaining eye was removed at his young age of 2-1/2 years old. This unexpected journey raised my consciousness and passion on the importance of sensitivity and support for new parents' journey in being an empowered and loving parent for their child, whether they be Deaf or Blind.

"When RJ was 4 1/2 years old, he received a new Deaf baby brother, Tyler. It was a great match for these two—RJ being Blind and Tyler being Deaf.” The Bilingual ASL/English pilosphy was gaining popularity, but the oral/aural philosophy remained entrenched in educational culture. "Luckily and easily, Tyler attended ISD (Indiana) and the school had already adopted the bilingual philosophy. And after Tyler’s 4th birthday (and RJ being 9 years old), they received twin brothers"!

Twins Cody and Colton were both Deaf—and Jodee and Rusty learned that Colton also had retinoblastoma. But medical treatments had improved since RJ's infancy, and Colton's tumors weren't as invasive as RJ's had been. “At the same time, we were better advocates for full communication access (ASL interpreters, no ‘maybes’). Colton underwent chemotherapy right then and was able to carry on his life with both eyes and vision, and attending ISD with his twin brother, Cody.”

But against the odds, “Colton’s eye cancer emerged again when he was 16 years old (three years ago).” Instead of Riley Children's Hospital in Indianapolis, Colton undrwent many treatments in Cincinnati's Children’s Hospital before losing one eye to cancer. “Both Cody and Colton recently graduated from ISD (June 2015) and are attending Gallaudet University.”

RJ uses a hearing aid, speech, Braille, and tactile ASL. The others use ASL. “One slight challenge is when we have our dinner conversations, all of us together. Since Jodee and Rusty received speech training as children, they use speech with RJ; he signs to them. “Rusty and I have definitely inherited our parents’ traits of family closeness, so that’s our biggest happiness. Raising and dealing with eye cancer with my oldest blind and Deaf son, RJ, and then repeating the experience with my other son, Colton, was very important in my belief of the power of bonding and respecting a child’s individuality. Love is the healing power.

“If you were to ask my close friends and family members what my personality traits are—they would say: compassionate and sensitive—striving for healthy bonding and growth in others. These are obviously carried over to the families whom I serve as an early-education provider.

“While I was at Gallaudet University as a first year college student, I was tapped by Dr. Frank Turk to consider taking the role as the peer advisor (to guide new students in their first year) and since then, it sparked my interest in studying personal growth, human development and counseling, thus a Master's degree in School Counseling with Deaf Students from Gallaudet University in 1988.

“I have been providing a variety of family-support services since early 1989, beginning as the Staff Therapist for a local mental-health agency in Indianapolis. At that time, the agency had just started the Deaf Services to fill the gap of serving Deaf people (and their families). My instinct was to take on a caseload of Deaf children with their parents and siblings in sessions. Gradually, I worked at the Indiana School for the Deaf in several counseling-related roles (guidance, school, and early intervention). Through my counseling work with these Deaf children, their issues were mainly due to lack of wholesome communication and deep conversation with their parents and siblings.

“Then, in 2013, I seized the opportunity to cease working full time and do part-time contractual work, which I continue to do this day, in my role as a Deaf mentor with families of Deaf infants and toddlers. On top of this, I co-teach two courses with Gallaudet University’s Deaf and Hard of Hearing Infants, Toddlers and Families: Collaboration and Leadership Interdisciplinary Graduate Certificate Program. In addition, being grateful to my Deaf professional role model, Dr. Beth Benedict, since 2009 I’ve been very involved with the American Society for Deaf Children (ASDC, www.deafchildren.org). ASDC clearly has ‘it all’ for each and every family (with Deaf children) because of three major differentiators from other parent support groups: ASDC is the only national parent-support group to openly embrace having visual-language foundation (ASL) for Deaf children, ASDC’s National Conference is for families, and ASDC is Deaf-friendly, with Deaf leadership and an abundance of Deaf role models. On top of it, the board also contains hearing parents who share similar vision, so it’s my favorite organization to serve on. I recently completed co-chairing the 2015 ASDC Conference, held in Indianapolis—Indiana School for the Deaf, which essentially was a huge success. What I consistently kept in my mind throughout the conference planning and execution, it was to showcase that the parents are very valuable people in their Deaf children’s lives and the atmosphere that showed best practices of both ASL and English permeated everywhere. Through my ongoing contribution with ASDC, it allows me to contribute my passion and belief into a variety of avenues, such as position papers, publications, presentations, and gatherings.”

My Primary Work: Being the Heart and Eye
Remembering my childhood that prompted my lifelong passion—plenty of playtime, sibling relationship, family rituals, summer vacations, and creating (and being in) complete access to ASL, all of these encompassed how I portray the essential skills with the parents and family members as ‘partners’. I love the purity and innocence of all babies—knowing they come to the world with a very open and clean view. I’m also a keen observer and sensitive, so I enjoy being a family educator through mentoring, teaching, writing, or presenting. One immediate specific role is being a Deaf Mentor and Trainer. The goal for these families with a Deaf Mentor is to appreciate the value and benefits of partnering with Deaf adults, to learn and comfortably use American Sign Language, become familiar with the Deaf Community, and meet many other Deaf people that best meet the family’s needs and goals. There are many spoken-language services and hardly very much for ASL services. For this, I continue to be passionate as a provider with the newly-identified families with Deaf babies and young children.

For the parent(s), their newborn baby is a new and exciting experience that is not provided with a ‘personal instruction manual.’ When the baby is Deaf, a host of new learning experiences into the unfamiliar and unknown come in. Upon entry in Early Hearing Detection and Intervention (EHDI) programs, it is essential for families to be led to resources that can support their positive parenting journey with comprehensive information. Deaf people come from all walks of life, with their experiences that vary widely, based on their audiological, linguistic, cultural, education, and social-emotional experiences. Identity is fluid and changes throughout one’s development stages and family structures based on living outcomes and availability within reach of the support system of both the Deaf and hearing communities. So, a Deaf adult as a ‘specialist’ (deaf mentor, deaf role model, ASL specialist, and so forth) play a valuable role with the families. A chapter of this topic is in the EHDI’s Resource e-book, found here:

http://www.infanthearing.org/ehdi-ebook/2015_ebook/19-Chapter19DeafAdultsConnecting2015.pdf

Through the Deaf Adult’s involvement, the family thrives in all aspects of development, such as language, cognition, and social-emotion health. I continue to be on the move with this involvement.

“One great eye-opening, career-changing moment came when I had the opportunity to attend the 2nd Early Hearing Detection and Intervention (EHDI) Conference in 2003 in Atlanta, GA. It was my first time and I was thankful that my other professional colleague, Cindy Lawrence, an ally and a sibling of a Deaf brother, had suggested that I attend. I didn’t know who would be attending and also, I was under the big assumption that the conference was . . . good.

Once I entered the big place, shock was my first reaction, that there was that many people who were ready to make a difference with Deaf babies and young children, [believing] that these babies would be fixed and all will be well. I didn’t see the same way, and while navigating myself through this shock, I bumped into Dr. Beth Benedict and I quickly told her how shocked I was with this type of conference and that it was all wrong. I learned that the 2003 EHDI Conference was her second time attending and that she was thrilled to see another Deaf face in the space (me)—we were literally the only two Deaf human beings present. Since then, we’ve stuck together and collaborated that more and more Deaf people and allies would be attending future conferences, so that being Deaf would be seen, respected, and valued, and easily noticed at ‘that space.’

“Piece by piece, I learned my way through the system of EHDI and since that 2003 EHDI Conference, I’ve attended all except for the 2013 Conference. Sometimes I ask myself: why do I continue to attend when it’s not clearly a celebration of Deaf being? For me, it’s to keep the power and belief that Deaf babies and their parents receive the right services. That’s what led me to being on the move, doing some work via presentations and writing.

“Several of my proud and challenging key contributions in society come to mind. One was with the Joint Committee on Infant Hearing’s Supplement to the JCIH 2007 Position Statement: Principles and Guidelines for Early Intervention After Confirmation That a Child is Deaf or Hard of Hearing (2013) (www.jcih.org) and the chapter for the Resource Guide of the Early Hearing Detection and Intervention, called ‘Deaf Adults Connecting with Birth to Three Families’ (http://www.infanthearing.org/ehdi-ebook/2015_ebook/19-Chapter19DeafAdultsConnecting2015.pdf).

“The process of creating both required very close attention (and conversation) to details and clearly communicating with the contributors (writers) and committee members while drafting the supplement (25 pages) and the chapter (10 pages), so that the Deaf Community and parents were seen, included, and validated as co-existing partners during the early years of a Deaf child’s life. I wanted to be sure that the families had a sense of pride in raising their Deaf babies and young children and the ‘sense’ would come from a community of supporters, everyone. Basically, I’d be considered as the ASL and Deaf Community advocate. On top of this, due to my professional background in counseling, a positive mental health is a very important outcome, even for babies, and even more so for Deaf babies. Currently, the JCIH members are finalizing the JCIH 2015 (which will end up being “the 2016”) Position Statement, which serves as an update to the JCIH 2007 Position Statement.

“Second, it was navigating the hospital systems, real life, in ensuring full ASL access for my family (and I share the same wisdom and advice with families I work with as Deaf Mentor).

“Often, people question to me why very young Deaf children should have this ASL access if it’s the parents’ responsibility to make medical decisions. Simply put, it is a good feeling to have equal access and participation in taking charge of our own livelihood, especially as a Deaf person, and it starts very early—Deaf babies and young children do know that it’s a necessity.

“I am content to be on the move, having a good balance of being with my family, performing contractual work as the Deaf Mentor (and trainer), staying invested within the committees that contribute to early education and family support, and teaching a course or two of the same field with Gallaudet University. I am very proud of my endeavor as a Deaf woman, parent, wife, friend, colleague, trainer, consultant, Deaf mentor, counselor, writer, and advocate.

“Above all, I’m looking forward to the day, hopefully very, very soon, that there would not need be a confusion of how we are named—Deaf, and that all Deaf babies, young children, and families will readily and easily embrace ASL at the start, without question.

“Therefore, my signature line of Adapt. Resilience. Acceptance. Celebrate . . . and staying on the move.”