Guest Author - Kelli Deister

Beth Tokioka has agreed to an online interview with me. Below are her answers to my questions. I would like to thank Beth for taking the time, from her very busy schedule, to participate in this interview. Beth speaks eloquently on many issues surrounding deafness, and deserves commendation for bringing such difficult topics and truths to light. Thank you, Beth, for sharing from your heart.

Please note that when Justin's mother speaks of him, she refers to him as Pono, since that is the special name his family has given him.

Kelli: When the doctors initially informed you and your husband, Jimmy, that Justin was Deaf, what were your first reactions, feelings, thoughts etc.?

Beth: "We were stunned. We didn’t know he was deaf when he was born. When he was about 9 months old a woman we were working with in a 0-3 program told us he wasn’t babbling like he should be. It took us three months to get him properly diagnosed. We kept hoping the “worst” wouldn’t be true. When the medical personnel told us he was profoundly deaf, we didn’t really know what that meant, but we knew it was bad. It was so sad. We felt like Pono had died. We couldn’t even imagine what his life would be like. Neither of us knew anyone who was deaf. One doctor told us he would probably never speak. That was devastating to me. I just kept thinking, "I’ll never hear him say ‘I love you, Mommy’." "

Kelli: Please share with us what steps you both took to communicate with your son, from an early age.

Beth: "We signed up for a sign language class right away. We had a teacher who was Deaf, a woman named Angie Molina. She was a godsend for us and is a close friend of ours even until today. She is a former “Miss Deaf Hawaii” and has always been close to Pono and his sister, Emma (who is hearing). Jimmy and I took that class, along with Pono’s grandmother, uncle and cousin. He got hearing aids but never really got much benefit from them. We struggled to learn sign language. It wasn’t easy because there weren’t many classes on Kauai. We went to Deaf Club picnics once a month and learned more just talking to other Deaf people. Easter Seals helped us a lot – providing speech therapy for Pono and moral support for us. They encouraged us to pursue total communication with Pono – giving him easy access to language through signing, but also trying to develop his aural/oral skills."

Kelli: Has Justin’s education been affected by his deafness?

Beth: "Oh yes. He has had a wonderful education and great support from the public school system. He’s very bright and tests at grade level or higher for every subject except reading and writing. He struggles with English so much. For most Deaf people, English is a second language, and it’s so hard to learn. Imagine trying to learn French without ever actually hearing the language. It’s mind boggling to me that he has made as much progress as he has! In school we have tried all kinds of set-ups: a small, self-contained special-education classroom; partial mainstreaming with pullouts for language intense subjects; and now almost full mainstreaming with extra help in language arts and a pullout for speech therapy. It’s hard because he is the only Deaf child in his school, and the only Deaf child his age on the island. He now has a cochlear implant, and he went from having no spoken language before the implant to now (after four years) becoming completely oral. He never stops using his voice! He has a sign language interpreter with him all day long, because he just can’t pick up enough of what the teacher is saying relying on his hearing alone. He’s doing really well, despite having to work hard. And he really likes school. He’s a good student and we’re really proud of him."

Kelli: Does Justin have any special interests or hobbies, other than baseball?

Beth: "At school he loves working in the cafeteria and is part of the JPO (junior police officer) squad. He also loves to golf, and is a very good golfer. His Dad has worked really hard with him to help him excel at those two sports. He’s a pretty versatile athlete and likes doing anything physicial: swimming, bicycling, skateboarding – you name it. He also LOVES games: card games, board games, chess, checkers. He’s really, really competitive – but has also developed pretty good sportsmanship skills over the years through playing baseball."

Kelli: At what age did Justin begin playing baseball?

Beth: "He started when he was five playing t-ball. We never dreamed he would have taken the sport so seriously and excelled the way he has. He has studied the game and knows it very well, from a physical and mental standpoint. Even though with his CI he can hear very well, he doesn’t use it for baseball because he has learned to play the game visually and the noise would just be a distraction. He’s a lot smaller than most of the other kids his age, and he can’t hit the ball as far as some of the other players, but he is a great bunter and baserunner. He plays pitcher, catcher, second base and shortstop. He’s very versatile, alert and focused on the field."

Kelli: Has Jimmy been Justin’s interpreter throughout his years of playing sports? If so, has there ever been a challenge, such as this most recent one?

Beth: "Jimmy has interpreted 99 percent of the time. Jimmy has also been his coach. I help out interpreting when he can’t be there, but Jimmy is usually there. It is very challenging sometimes – but for very different reasons than what happened this summer. Pono is rebellious like any other kid. He doesn’t want his Dad telling him what to do. It is very frustrating for Jimmy sometimes but he hangs in there. Until the Mustang State Tournament in July 2005, we have NEVER had a problem with another team, League official, or ANYONE challenging Jimmy’s role as an interpreter. We can’t say enough good things about the Lihue Baseball League and the Kauai PONY officials and how they’ve embraced Pono."

Kelli: Please share with the Bella Online readers what happened on that day in July, when Justin was denied access to his interpreter. How did the organizations decision affect the interpreter, as he struggled to find a means of providing adequate communication for Justin?

Beth: "I have to go back to how he was selected for this All Star team. At the end of the season, the coach who has the best regular season record gets to coach the All Star team and choose the coaching staff. Pono’s team did not have the best record, and the coach who did (Myles Aquino) had never worked with Pono before. Jimmy didn’t know him well at all. All the coaches vote on the top players and the winning coach has a little bit of discretion as to who gets to play on the tournament team. Pono made the team based on the coaches’ balloting. Myles was really happy to have Pono on the team and wanted to communicate to him, but he had only 2 ½ weeks to practice before the tournament started and you just CAN’T learn sign language that quickly. So it was really, really important to have Jimmy there. Pono had to learn how this new coach thinks and strategizes…it was a lot to absorb in just a few weeks.

Myles was able to choose his own coaching staff and he chose coaches he knew and who had tournament experience. The PONY organization says they should have chosen Jimmy as a coach…but that’s ridiculous! Anyway, we knew about this three-coach rule and when the team arrived in Hilo on Friday night for the pre-tournament meeting with the Hawaii PONY officials and the other coaches, the Lihue coaches asked if this could be discussed at the meeting, so that Jimmy could be allowed in the dugout as an interpreter. They had allowed it in the Sectional playoffs on Kauai so we assumed it wouldn’t be a big deal in Hilo. WRONG!

The officials refused to allow the discussion at the meeting – so the other coaches didn’t even have a chance to share an opinion. The officials took the position that Jimmy would be a fourth coach and refused to budge. The next day before the game the argument continued. Jimmy was really losing his cool trying to get them to understand. Pono was confused but tried to focus on the game that was starting in about 20 minutes. At one point they called a PONY baseball official on the mainland to get another opinion, and the guy said “what are these guys trying to pull?” We just couldn’t believe they were being so insensitive to this child and accusing us of doing something underhanded.

Jimmy finally threatened to call a lawyer – which really made them mad – but they decided to let him sit in a roped-off area next to the dugout. It was a terrible setup. He was so far away from the coach that he could hardly hear what he was supposed to interpret. Plus, they played the music so loud in-between innings (we thought it might have been intentional), that it made it even harder for Jimmy to hear what the coach was trying to tell the kids. Another problem is that it’s important for the interpreter to stand next to the person who is talking, so the Deaf person can see the facial expression and pick up other non-verbal clues from the speaker. That’s impossible when you have to look at an interpreter who’s ten or more feet away in the other direction. It was very, very frustrating and confusing to Pono. To Pono’s credit, in spite of all this, he played very well during the tournament."

Kelli: Did the opposing teams have any qualms about Justin’s interpreter being in the dugout? Or was this strictly cited as a regulation policy for the PONY organization?

Beth: "At the time I don’t think they were even aware of what was going on. We wanted them to have a chance to comment at the pre-tournament meeting but the officials wouldn’t allow it. Jimmy has talked to all of the coaches since then, and they’ve all said they would have had no problem with the situation as proposed. The officials have said coaches complained, but we don’t know of anyone who was bothered by the situation. They all seem to understand it’s all about the kids."

Kelli: At the end of the day, when you folks were home discussing the events of the game, can you tell us how Justin felt at having been denied access to his interpreter? Can you tell us how you and Jimmy felt, having to watch your son participate in a sports activity with no adequate means of communication?

Beth: "Pono is a pretty resilient kid. He is still confused by the whole thing – it’s hard to explain the irrationality of adults -- but he wasn’t going to let it get in his way of competing and enjoying the tournament. He has really happy memories of the tournament and we try to focus on the positive things with him. Jimmy, on the other hand, was very, very upset – and so was I. It just breaks your heart when you can’t successfully advocate for your child. I was really proud of the way Jimmy fought with them and we were both just stunned by what happened. We knew that we were not going to let this situation go un-addressed. We had to make it right – not just for Pono, but for all the other kids with disabilities that might want to compete in the future. Now we’re angry…and we’re determined to make it right."

Kelli: Having hearing loss myself, I understand that no interpreter should be expected to act as a coach, or vice-versa. Can you please share with our readers why this is such a hot topic at this time? Why was it such a misconception for the PONY organization to state that Justin’s team find a coach that also fluently signs in ASL?

Beth: "They just don’t understand what an interpreter is. In school, Pono has a certified sign language interpreter. His teacher is not his interpreter and, in fact, knows no sign language. But it’s important for him to understand all the information he is receiving. So an interpreter is absolutely essential for him in school, just as it is in baseball. You have to understand that ASL is it’s own language and is about as hard to learn as any other language! You don’t just interpret an English sentence word for word. You have to turn that thought into ASL. It’s difficult, and it takes tremendous concentration to interpret. You can’t adequately interpret and coach at the same time. Just like you can’t interpret and teach at the same time. An interpreter is an interpreter and a coach is a coach and a teacher is a teacher and a doctor is a doctor, etc. It’s that simple. People don’t appreciate how much training, education and skill it takes to be an interpreter. Jimmy and I act as Pono’s interpreter in many situations because we have to, but we are not “true” interpreters. We are proficient signers but not fluent signers."

Kelli: Many in the hearing community fail to understand that although Jimmy is Justin’s father, he is also Justin’s interpreter. These are two different roles, which your husband must play in Justin’s life. Can you explain how this works for our readers, so that they can gain a clearer understanding?

Beth: "Jimmy and I both interpret for him at family functions, church, social activities, etc. It is really, really hard sometimes! Especially when your child decides it’s time to misbehave and you are trying to be interpreter and disciplinarian at the same time. You have to decide if it’s more important for him to get the information, or to be disciplined. It’s frustrating, to put it mildly. We also have a daughter, Emma, who is five and is hearing. She has to take a “backseat” much of the time because we have to interpret for Pono. It’s hard and frustrating for her also. As a result she acts out sometimes and then it becomes really difficult…because we have to put Pono’s needs aside and tend to Emma’s needs. Jimmy and I are divorced, so we usually have to deal with these situations alone. When you are outnumbered and trying to be parent and interpreter at the same time it’s almost impossible to manage successfully!"

Kelli: What would you and Jimmy like to see happen, in the area of reform to the PONY organization?

Beth: "PONY must – and will – recognize that a sign language interpreter is not a coach, and that a Deaf child should be allowed access to his/her interpreter at all times. It’s really simple. What they have done violates the Americans with Disabilities Act (ADA). They have to learn how that law applies to their organization and make a commitment to honor the ADA at all levels of the organization and in all situations. We won’t quit until that acknowledgement is made…for Pono and all other kids with disabilities."

Kelli: If you could say anything to the hearing community, on behalf of your son, as well as all Deaf sports participants, what would it be?

Beth: "I would just say that what Pono has achieved is not anything magic or out of the ordinary. He just had a chance to compete and learn just like all the other kids – because he had equal access to communication. To hear someone say that he does well “for someone who is deaf” really hurts. Deaf people can do anything hearing people can do. He’s just like any other kid if you take the time and effort to get to know him. I wish more hearing people could get beyond barriers to communication and find a way – any way – to connect with the Deaf community. It’s really not that hard. Just try!"