Tuesday, October 22, 2013

Deaf People's Rights and Cued Speech

I sent an email to Human Rights Watch in response to a video they produced, drawing attention to the issues of those who have hearing loss. My email is posted below. I strongly encourage the Cued Speech community to contact Human Rights Watch and share their experiences with Cued Speech.


A video by HRW was brought to my attention regarding the rights of deaf people. 

While I applaud HRW's efforts to support the deaf and hard of hearing population, I believe that the organization could benefit from some further education about the demographics of those impacted by hearing loss. 

Sign language is not the only option that parents have in terms of learning to communicate visually. Cued Speech is a different type of visual communication system that is based on the linguistic principles of spoken language, therefore rendering it easier to learn and use over time compared to sign language. 

One of the biggest logistical challenges that parents face in learning sign language is the fact that they are learning a new language. One of the reasons why deaf children struggle is because of the limited communication within their family and that further perpetrates the sense of isolation and exclusion.

In my opinion deaf and hard of hearing children have a right to access to the language of their home (which is overwhelmingly spoken-language based). As long as they have full and consistent access within the family unit, then they are developing a language foundation upon which they can learn multiple languages, including sign language. 

In the United States, nearly 10 million people are impacted by hearing loss, yet not even 400,000 of these people use sign language, and Gallaudet counts hearing people who sign among that number of sign language users. While the number of cuers (those who use Cued Speech) is far lower - 2% of DHH students use Cued Speech for educational access according to the General Accounting Office - the results are profound. 

Cued Speech demonstrates a paradigm shift in how deaf and hard of hearing children gain access to society in terms of language, socialization, and education. Research continues to demonstrate that those exposed to Cued Speech are acquiring language as a native user of their home language.

We have the right to access to spoken language and hearing technology just as we have the right to visual languages. Sign language is not the only option out there, and it is HRW's duty to not to continue that perception that sign language is the sole answer when it contributes to that sense of isolation in some ways in terms of not giving children the necessary skills for adapting to a spoken-language based society.

Please feel free to check out, and the Cued Speech group on Facebook. You can also visit my blog at to learn more about the different aspects of the deaf and hard of hearing community.

We are a minority, but a federally protected minority in regards to IDEA, ADA, and Section 504. Despite these federal regulations, we still struggle for acceptance and recognition as a community. We are developing our own sense of cue culture, which is a different form of "Deaf culture" in that we have overwhelmingly positive views of our experiences growing up. The vast majority of native cuers are happy their parents chose Cued Speech, yet many of them go on to join the deaf community and become "highly flexible communications" in that they can speak, read, write, cue, and sign.

Furthermore, one of the most important milestones internationally is the fact that the Dominican Republic is now requiring the use of Cued Speech to teach literacy in all schools of the deaf across the country. Sign language is still a part of the curriculum, but the reality is that Cued Speech is far more effective in terms of facilitating language and literacy development. 

We are looking for equity and inclusion in terms of the mainstream media recognizing Cued Speech for what it is, a game-changer in deaf education and for direct access to spoken language.

I look forward to your responses and any opportunities for collaboration in the future.

Aaron Rose, MSDE


Feel free to contact Human Rights Watch at and share your thoughts about how HRW can address the rights of the deaf, not just those who use sign language. 

Monday, October 21, 2013

Facundo Element's Fondness for Friction

Consider this an open response to a thread on Ryan Commerson's comments about Hands & Voices. I am mainly directing this open letter to representatives of Facundo Element, who have good intentions in promoting American Sign Language, despite their controversial tactics and approaches.

Cued Speech is a visual communication system that is based on the linguistic principles of spoken language. Some view it as a tool, others view it as a language mode (just as speech and print are language modes, but not languages on their own). We are already witnessing 2nd generation deaf families who cue. That in itself is proof of cued language as a preferred language mode for some members of the deaf community.

American Sign Language does not have a print form that is ready accessible nor does it have an auditory mode. It is only in the visual medium that it can be conveyed. So comparing Cued Speech and American Sign Languages is like comparing vegetables and fruits. Both are visual, but the commonality ends there.

The logistics of learning a new language can be daunting for some parents who already are overwhelmed with the demands of supporting their family therefore Cued Speech has attracted some parents because of the idea that they can visually represent the language they already know and use in their home and can easily learn the system in a matter of days, not months or years.

There is still marginalization in the community against Cued Speech, whether Deaf people choose to recognize it or not. Gallaudet and RIT/NTID have been agents of oppression and discrimination over the past few decades in regards to recognizing Cued Speech and the benefits it has for providing direct access to spoken language. Despite inclusion in federal law, there is no equity when addressing all modes of communication. ASL is not the only option for the deaf and hard of hearing, as many parents ask the question of how they can effectively convey their own spoken language to their deaf children.

The perspective of socioeconomic inequity is a function of one's own experiences. I can say the same about the oral community in terms of socioeconomic factor playing a role in the demographics, but that is a bigger issue beyond the deaf and hard of hearing community and one that needs to be addressed in terms of racial and social justice.

The fact is that H&V provides sign language interpreters at each board meeting and staff retreats. Many of the parents on the board have used and still use sign language, but it may not necessarily be American Sign Language. However it is not an organization for the deaf and hard of hearing. It is an organization that supports parents who have children with hearing loss, and as should be, H&V is primarily composed of parents with some representatives from different areas of the community.

H&V has done so much work in terms of supporting parents who pursue sign language. Yes, there is more work to be done in terms of educating ignorant and biased individuals on the impacts of hearing loss on children and the need for visual support, but there are many different opinions on how that should be done, therefore open discussion and collaboration is critical to progress.

If one has any suggestions for how H&V can improve its programming in terms of parental support, feel free to share them. But criticism does not result in progress. Collaboration does.

My perspective of accessibility at FE's think tank on deaf education was that there was some access when people moved their lips. When others did not move their lips while signing, that was a matter of inaccessibility, but rather than criticize and distract, I focused on the bigger picture of discussion and collaboration. I spoke up on behalf of spoken language, but people's responses indicated that they didn't care for the idea of spoken language. Why should people attempt to collaborate with those who are unwilling to recognize spoken language for what it is, the preferred mode of communication throughout the world in terms of socialization?

Deaf people on the H&V board are much more open-minded in terms of accepting the diversity that makes up our deaf and hard of hearing community. Not everyone is Deaf, and the reality is that the Deaf are a minority when taking into consideration the demographics of those with hearing loss. The loudest voices are not necessarily representative of the views of the masses.

There will always be a demand for services and technology that support outcomes related to spoken language and hearing as there will always be a community of Deaf people who embrace deafness as a way of life and demand access to visual languages. Why can't we co-exist?

Rather than antagonizing and alienating those who could serve as allies, Facundo Element should focus on collaboration and offering solutions. The so called "educational-medical complex" that FE rails against is a product of society's efforts to ameliorate the impacts of hearing loss in terms of language acquisition, socialization, and education. It certainly warrants a lot of improvements, but that is a matter for collaboration, not antagonization.

I have my own opinions about how the system should change in terms of improving access and educational support for all children with hearing loss, but I don't engage in counterproductive behavior that does not bring people together to focus on common issues. It is easier to fight against something than it is to come up with solutions.

I wish Facundo Element the best of luck in their efforts to bring attention to the benefits of American Sign Language, but hope that they will reflect deeply on how their own actions are adversely affecting their ability to effect positive change.

Saturday, October 19, 2013

Self-Government and the Future of the National Cued Speech Association

After watching some of President Obama's speech on self-government, I reflected on the state of the Cued Speech community in terms of self-governance and the organizations that promote the interests of Cued Speech.

American self-government is essentially a matter of setting rules mutually agreeable to and adhering to these rules in terms of protecting life, liberty, and the pursuit of happiness. Not all of us agree on what government should and should not be, but we basically agree on the need for a centralized infrastructure that provides basic services necessary for community preservation.

Self Government and Cued Speech 

Is there a sense of self-government among the cueing community? I would say yes and that is in the form of the National Cued Speech Association. The NCSA was founded in 1982 as a national organization with the purpose of serving the needs of parents and educators working with children who have hearing loss. Today the NCSA continues to service the American cueing community and has significant successes to tout, including the inclusion of cued language services within federal legislation. This achievement perhaps is the most significant milestone that the cueing community should recognize because the inclusion of such language validates the existence of Cued Speech as a federally protected mode of communication, giving cuers rights and protections.

The NCSA also serves as a steward of Cued Speech, maintaining quality control and ensuring that certified instructors adhere to the guidelines of Cued Speech, codified in Volume 5 of the Cued Speech Journal in 1994. In Dr. Cornett's mind, Cued Speech had one basic rule - what looks the same on the lips must look different on the hands. Out of that simple concept evolved a simple visual communication system that only uses eight hand shapes and eight hand placements within a binary consonant-vowel construct to convey the phonemes of spoken language.

The NCSA Presidency

Just as our American government has gone through cycles of leadership and administration, the NCSA is entering a new period in which a new board will take place. At this point, I am now announcing my intentions to run for president of the National Cued Speech Association. Why now?

As part of my commitment to transparency, I will share that three weeks ago I submitted to the NCSA board of directors an evaluation on the state of the NCSA, which outlined strengths and next steps to be taken. The purpose of sending this evaluation was to send a message to the NCSA that there are specific areas that need to be improved on, especially engagement with the cueing community.

In response to my comments about the future of the NCSA, I was offered the presidency and invited to Portland, Oregon for the Fall 2013 board meeting. Due to circumstances and conflicts in scheduling, I declined politely at the time. However three weeks later I found myself engaged in discussions with some other native cuers who also happen to be board members and do have aspirations for leading the NCSA at some point.

I reevaluated my position and discussed my thoughts with my most trusted advisor, my own wife. We both understood that it is critical for the NCSA to have a strong leader who has diverse experience from non-profit management to a deep understanding of deaf education and politics within the deaf and hard of hearing community. At this point I went ahead and sent an email to the NCSA board announcing my reconsideration and outlining my vision for the future in terms of setting a 3-6-9 year strategic plan so that we have more resources and increased awareness of Cued Speech, especially among the mainstream.

The following points outline my vision for the future of the NCSA in terms of supporting the Cued Speech community.

Professional Development

The NCSA applied to the Department of Education for funding to support both development of an array of assessments on cued American English fluency and a certification program that would endorse professionals' understanding and application of Cued Speech in the educational setting. We only received funding to develop the assessments, which has been available for three years now. Under my vision, the NCSA would facilitate the development of an independently governed, subsidiary corporation that would focus on certification development and maintenance for a variety of professionals who use Cued Speech.

Furthermore, starting with the 50th anniversary of Cued Speech, the NCSA would implement a program that offers professional development both in physical and virtual spaces. Rather than focusing on the traditional model of conferences and conventions every year, the NCSA would think outside the box in terms of bringing professional development to those who need it the most.

Professionals who are able to demonstrate that they are highly qualified cued language service providers would be able to add CSCL (Cued Speech and Cued Language) to their list of credentials. Such a certification program would reinforce the idea of cued language services as an evidence-based practice in the educational and medical settings in terms of language, literacy, speech, and auditory development.

Cued language transliterators provide a critical service for the deaf and hard of hearing and the NCSA has an obligation to promote their interests, especially now that the Educational Interpreter Proficiency Assessment (EIPA) program includes an assessment for Cued Speech. Certification maintenance includes the need for expanded professional development beyond the basic courses that have been typically offered.

The issue of instructor certification must be addressed because some instructors are considering letting their certification lapse as some feel there are no benefits to certification. The NCSA has an obligation to maintain quality control and motivate instructors in adhering to high standards when providing Cued Speech instruction.

Communication and Engagement

For the past 30 years, the NCSA has communicated with its membership through print. I aim to change that by integrating technology in the form of video production so that we can demonstrate better what Cued Speech is and serve as models for the cueing community. Board communications would take place in the form of videos that provide announcements. Just as the National Association for the Deaf provides communication via video in American Sign Language, the National Cued Speech Association will provide communication in cued American English with subtitles to make it more accessible for all.

Furthermore, the NCSA will increase its presence on social media and engage the cueing community in terms of encouraging people to take initiatives in spreading the message of how Cued Speech facilitates spoken language and literacy acquisition along with supplemental benefits of speech articulation and auditory skill development.

My vision includes an expansion of programming which would serve to support underserved regions, not just in the United States, but also across the world. With international collaboration, I envision cue mission trips to areas where deaf education is still developing and fledgling organizations need support.

With the use of advanced technology in terms of communication and collaboration, I aim to support affiliates and chapters in helping them to become more effective and efficient in their own local operations. Through focused evaluations, my goal is to help identify strengths and next steps so that grass-root efforts can be more effective without the need for increased resources.

Lastly, I envision CLEAR Center serving as an independently governed subsidiary that supports the mission of the NCSA in terms of training Cued Speech ambassadors and facilitating resource development and research.

Expansion to the Mainstream

As evidenced by the experiences of some, Cued Speech does not only benefit the deaf and hard of hearing, but also others who have learning challenges that might require more visual support, such as those with autism, Down Syndrome, oral apraxia, dyslexia, and so on. My vision includes increasing our engagement with other organizations who serve populations with atypical development and special needs, particularly the Council on Exceptional Children.

Research is sparse in this area so we must take the opportunity to support funding for such research opportunities that will help us understand better why Cued Speech is so effective in priming children's language acquisition and facilitating direct access to the language of instruction in the classroom. We must overwhelm the skeptics with rigorous and robust research data that demonstrates the need for a multi-sensory approach to education.

I envision a world where Cued Speech is considered an integral part of the curriculum of teacher preparation programs in post-secondary institutions and professional development is not only applied to the needs of those with hearing loss, but the needs of those with unique learning styles that are visually dominant.

Leadership is a function of Followership 

The reality is leaders cannot succeed in making their vision a reality without the help of followers. I need your help and commitment to make my vision of expanding the presence of Cued Speech a reality. President Obama's 2008 campaign demonstrated the power of grass-roots efforts in terms of engaging citizens, and I aim to apply these lessons to the management of the National Cued Speech Association.

You may ask yourself, "What could I do? Where do I start?" In response, I ask, "What are your strengths? What do you do well? Bring that to the table and don't be afraid to take the initiative." I believe in the power of innovation and invention. Just as Dr. Cornett took the opportunity to address a specific problem, you can take the opportunity to get involved, particularly at the grass-roots level. Identify specific needs in your community and engage your peers in terms of collaborating together to answer these needs. Take the opportunity to advance your awareness and understanding of Cued Speech in order to be a better advocate.

In summary, communication, engagement, expansion, and professional development are just some of the themes that I aim to instill throughout the National Cued Speech Association membership and the community worldwide. With your help, we can continue the Cued Speech revolution and show the world what Cued Speech is and how beneficial it is for the family unit and the educational setting.

Will you join me in my campaign to serve as the president of the National Cued Speech Association?

Aaron Rose, M.S.D.E

Thursday, October 17, 2013

Conversations with a Cuer: My Mom

My mother, Fran Pinnix, is in town to enjoy some precious time with her granddaughter so I took the opportunity to interview her about her experience raising me with Cued Speech.

AC: How did you hear about Cued Speech?

FP: Completely by accident. You had just been diagnosed as profoundly deaf. We left Raleigh ENT and I was so devastated. I left crying. You were still asleep from the drugs and I cried and cried. I went to see your Aunt Diane at her work. I must have been a mess because everyone in the office left us alone. So we cried together.

Raleigh ENT felt so sorry for us so they had a parent call us to encourage us. She mentioned that they were using Cued Speech and oral education. When I first started learning about Cued Speech, I heard bad things being said very negatively about Cued Speech. But I thought in order to make a fair choice, I had to check out Cued Speech first. That's when I met Mary Elsie Daisy. We went to the Cued Speech Center in Raleigh.

AC: What was it like meeting Mary Elsie Daisy, the first cue mom, for the first time?

FP: I was so impressed with her. and I thought it was too good to be true. Everything she told me about her daughter I wanted for you. So I asked to meet her daughter and she threw a social with drinks and snacks.

FP: Her daughter and I talked together like you and I do. I understood her and she was living independently and going to college and then I decided if she could do it, you could too.

AC: In Johnston County, which is a rural county east of Raleigh, what was the deaf education like there? You told me something about graduation rates.

FP: Terrible. Terrible. Terrible.

When I found out you couldn't hear, I spent the day at their deaf classroom, they called it mainstreaming, which it was not. It was self-contained in a mainstream school. The teacher had kindergarten through fifth grade in one classroom. They spent forty five minutes each morning doing speech skills and their speech was good, but academically they were way behind. That's five hours of academics they were missing out. One child left to go to go to math so that made them "mainstreamed."

At the end of that morning the teacher asked me if I had any questions or comments, so I had made some notes. I asked her how many had graduated and she got mad. She said that she thought maybe one. I said "that's not good enough."

They wanted you there because the more children they had, the more funding they had. You went to speech therapy in the basement of the school. In one of the meetings, the special education director said "we are so proud of our special needs children." And I said "Then why are you hiding them in the basement?"

AC: You sure were feisty, weren't you?

FP: I got so mad because we went a stinky basement for speech. I would get mad and they would say nothing. I was on the advisory board and walked in on a conversation and overhead the director say on the phone, "It's an educated parent. We need to handle this carefully." At that point I knew then I was going to be an educated parent, otherwise I would be taken advantage of. By being involved, I stayed on top of things.

I had a teacher tell me that the best thing I could have done for you was to leave Johnston County.

AC: That's saying a lot about the state of deaf education back then... What do you remember of my testing while in Johnston County?

FP: At 3 years old, you were tested to be at 18 months old language-wise, which I cried and cried about. But you were on target because I had exposed you to Cued Speech at 18 months, so you were making gains. I took comfort in the fact that you never lost ground. You would gain a few weeks each time, and six months later you were making big gains.

AC: I remember pictures of me at the General Assembly in Raleigh. Why were we there?

FP: We lobbied for every child being tested at birth hearing loss and we lobbied for educational support.

AC: That's interesting because I live in Colorado, essentially the birthplace of universal newborn hearing screening. 

AC: Why did we move to Wilmington?

FP: We were knew we had to find something better than Johnston County and we were going to put you in the oral program in Raleigh, but we had to be living in Wake County because it was funded by the county. Then it just so happened a job opened up in Wilmington for your dad. By then we had visited the Payonks and the Nelsons (cueing families) and we had visited the schools. We knew that the public school system would be good for you.

AC: We've talked about how well of a test-taker I am and you contribute that to all the tests that I took.

FP: You were tested so much that you didn't stress over taking tests as you got older. I do remember one time where you used the word "light" for "lamp" because I would say "turn off the light." When you said that, I kicked myself and from that point on I would always cue different words to expose you to more vocabulary.

AC: There was a lot of tension between you and my first resource teacher in Wilmington. What was up with that?

FP: No one believed that you could read and understand as well as you did. you had to prove that you could understand what you read. You started reading at five years old. Your first resource teacher never believed it. She thought you were just picking out the words.

AC: I often make the statement that I went through first, second, and third grade in a matter of a calendar year. How did that happen?

FP: You went to private kindergarten first, and then regular kindergarten. Then you went to first grade. At that point I was told that all the teachers thought it was best to hold you back. I later learned that was not true. Marilyn became your new resource teacher. You started showing behavior problems and she thought it was because you were bored since you had never done that before. She knew right away that you were very bright. We put you in 2nd grade in March. You were so scared that you wanted to go back to 1st grade, but I told you to give it two weeks or you could go back. Your teacher believed you could do it, otherwise I would have not suggested it.

AC: When I went into 2nd grade, I remember clearly one of these ah-ha moments where I discovered the concept of place value in terms of ones, tens, and hundreds. However, what was my math skills like at that point?

FP: The 2nd grade teacher said you were on target except in math, so every day we went to the picnic table and worked on math and I remember so well you looked up at me and I knew then you got the math concepts and I knew then that's why teachers teach. It was so rewarding to see the smile on your face.

AC: At this point I was fully mainstreamed with cued language transliterators. Were there any teachers that had difficulty with having a deaf student?

FP: Your 4th grade teacher was scared of you because she never had a deaf student. So I would tell her to treat you the same as others. I said that not to let you get by or the other kids will resent you. I told her to be tough on you. She then realized how smart you were and pushed to get you in the Academically Gifted (AG) program and you got right in. She became your biggest advocate, Ms. Ward. Every time I see these teachers, I thank them.

AC: And I know I was never bored in the AG classroom, that's for sure. I was lucky to have a speech therapist who cued early on in Wilmington, but then I ended up having different SLPs over the years. From that point on my opinion of speech therapy basically went downhill and I basically rebelled at the fact that I had to do therapy before or after school. What was your thought process in that?

FP: You had one speech therapist who made the mistake of pulling you out during academics and you had missed something. I asked her if she had read your IEP. and she said yes, and then I said "you know you made a big mistake." You were not to be pulled out.  She said she couldn't do it any other time of her schedule. "You have to do it because you are violating the IEP and if it happens again I will take action." We didn't want you to miss any academics so you had speech before or after school.

AC: For a period of time you were part of the organizing committee for Cue Camp Cheerio. Tell me about that.

FP: I was the director of the children's program at Camp Cheerio. It was wonderful for family support and educators. I always learned something new. We had presenters, guest speakers, and educators that came to camp. I gained good support from educators who I knew to turn to get things done at the state level, not just the local level. I gained resources I didn't have.

AC: Tell me about Dr. Cornett What do you remember of him?

FP: What I remember the most is the auto cuer and asking him if I should learn to sign. He said no and that I need to concentrate on all the language you've missed and and focus on getting all that language in. I also was told to teach you good listening skills. Because of that, we played listening games. I would stop and say, "I hear something. Do you hear something?" Then you would say, "Ma, I hear something, what do I hear?"

AC: How would you describe Dr. Cornett as a person? What was it like being in his presence?

FP: I would say he was a genius. He saw that deaf kids were not doing well in deaf colleges and felt there had to be a better way. He wanted the deaf kids to get the same information hearing children got so he came up with a way to do it. It was brilliant. He thought outside the box.

AC: What about Gallaudet Summer Family Camp?

FP: It was fun, but we were warned when we got there that students would probably be rude to us because they didn't believe in what we were doing.

AC: Funny because 15 years later I remember asking Dad if I could go to Gallaudet and he said "you don't want to go there, you won't like it." I accepted that as a matter of fact, but didn't really understand why until later on when I would learn about the politics there. At that time, he was right because of the fact that I never signed.

AC: Let's talk about the cochlear implant.. what was the thought process for you in deciding to go through with the surgery?

FP: In the beginning it was so new to children because it had just been FDA approved two years prior. I was uncertain because audiologists was saying no, you didn't need it. You had good listening skills. But Dr. Kraus said that yes, you did need it since your hearing loss was so profound.

AC: Why was there such a disconnect between the audiologist's opinion and the doctor?

FP: You were using your hearing aids very well.

AC: Now that's interesting because I honestly do not have any memory of the hearing aids, yet when I got the cochlear implant the memory of my activation is so vivid. What was it that made people think I had good listening skills with the hearing aid, despite my profound hearing loss?

FP: When you had your hearing aids, you had very bad speech, but you were doing so much better than most because you were learning to listen.

AC: Was it speech perception or sound perception?

FP: Both.

AC: After the activation, what did you see in my listening and speech?

FP: Really interesting. Right after we were told not to expect anything for about a month. But right after you got it, we were going somewhere and I dropped a bag of trash in an empty dumpster and you jumped. And then we were in the car with the sun roof open and the radio going and you started laughing. I asked, "What's so funny?" There was a dog whimpering in the car next to you with all the noise and you heard it. And then we went to Poplar Grove Plantation and there were the chickens. You were laughing because you heard the chickens. You had never done that before.

AC: I remember seeing a note on a 6 month audiology evaluation that said "WOW! 50% increase in speech intelligibility." What was that all about?

FP: Dr. Kraus, being a doctor and being everything scientific, said you had jumped one whole level in a short period of time. His reasoning for that as a scientist or a doctor is that maybe some of nerves that appeared dead had completely regenerated.

AC: That's interesting because that would be the precursor to today's current thinking of brain plasticity. When did I start being more dependent on audition and less dependent on Cued Speech?

FP: When you were in high school. your freshman year you wanted to drop the transliterators, which scared me to death. As a parent, it was comforting to known you had one. I also knew as a young adult, you wanted your independence. So we would give it a grading period and see what happens.

You actually did better. You had better grades instead of them being worse. You were so determined to do it on your own and you were watching and listening to the teachers.

AC: How did you feel when we stopped going to cue camp? I had my reasons including driver's ed, but what was your take on that?

FP: We had gone fifteen years in a row, but it was time to take a break. You had school going on and driver's ed and other things that you didn't need to miss.

AC: I remember that I basically felt like I was rejecting the deaf community, including Cued Speech itself. I asked you not to cue to me anymore. How did you respond to that?

FP: It was hard at first, after so long. But at the same time it proved you were not so cue-dependent.

AC: Now looking back, I might have done things differently had I realized the impact of Cued Speech on my access to instruction, especially in AP Calculus. That was one time where I definitely could have benefited from transliterators.

What is your advice for new cueing parents that are struggling with cueing and worried about their children's language growth?

FP: Someone told me the easy way out is not always the best, and that's true. Sometimes you have to work at it a little longer and a little harder for it to become easy again. It's hard in the beginning, but easy in the end.

Monday, October 14, 2013

Why Marc Marschark is Wrong about Cued Speech: A Review of the Body of Evidence

Marc Marschark wrote a post on NTID's page "Educating Deaf Children" in response to a question about whether research on Cued Speech is being taken into account when "evaluating and recommending a communication mode that promotes literacy in deaf children." His post REEKS of bias against Cued Speech, which is not surprising given RIT/NTID's history with providing cued language services.

Marschark has a long history with deaf education as the founder and editor of Journal of Deaf Studies and Deaf Education and has over 100 publications to his name, therefore he should have a lot of credibility when it comes to criticism of Cued Speech. However his criticism of Cued Speech has been one of that based on research articles and publications and not the overall body of evidence within the Cued Speech community.

I'm not one to engage in character assassination, but perhaps it is time to expose Marschark for who he is, a biased researcher in favor of American Sign Language and opposed to the use of Cued Speech. There is a camp of biased individuals entrenched in NTID administration that has commited discrimination and oppression against cuers and oral adults as evidenced by personal experiences with NTID's disability services (which seems to have been integrated into RIT's main office), but that's an investigative article for another time. Based on what I have read of his work and what I have heard from others, Marschark is a member of this group. This ridiculous statement that Marschark made about Cued Speech reveals his true colors:

In its more than 60 years of existence, it [Cued Speech] has never been found to facilitate the acquisition of reading skills by deaf children who are learning English. (Marschark, 2013) 

What the hell? Seriously? A lot of curse words come to mind when thinking about Marschark's attitudes and bias against Cued Speech, but I aim to keep this virtual space at least PG-13. FYI, Cued Speech is not even 50 years old, so get your facts straight.

Let's look at the body of evidence about why Cued Speech facilitates English language acquisition. After all Marschark seems to be only referring to research articles and not observations or anecdotal evidence, which when compiled together paints a pretty clear picture:

Dr. Cornett invented Cued Speech with the purpose of supporting literacy developoment. He carried out an educational experiment by recruiting an entire family with a deaf child to learn Cued Speech. The results set the stage for the next four decades of exposing children to Cued Speech for purposes of supporting language acquisition and literacy development.

Multiple cue camps exist to this day with hundreds of participants attending each year. Why would parents and professionals continue to organize these camps if Cued Speech was not successful in facilitating the acquisition of reading skills by deaf children who are learning English? After all that was really the point of Cued Speech.

Cued Speech has been adapted to over 60 traditionally spoken languages, yet why did people from other countries buy into Cued Speech? Because they saw the results of American children reading at grade-level or better. The promise of increased literacy levels is what drew these parents and professionals to organize non-profit organizations and advocate for the use of Cued Speech.

In the first few decades of Cued Speech, deaf children did not have access to the technology we have today in the form of digital hearing aids, bone conduction hearing aids, and cochlear implants, yet these cuers were able to achieve reading levels commensurate to that of their hearing peers. Not all were exposed to sign language and some lived in isolated areas where services were limited, yet because of their family dynamics, many of those cuers read at grade-level or better.

Many cuers were mainstreamed in the public education setting and went on to post-secondary institutions, including ivy league universities, which obviously requires strong literacy levels in order to be accepted. Some of their stories can be found in The Cued Speech Resource Book for Parents of Deaf and Hard of Hearing Children, written by Dr. Cornett and Mary Elsie Daisy, mother of the first native cuer.

One of the more well-known programs in the country for spoken language and listening outcomes, CASTLE in Durham, NC (an OPTION school), has come to recognize the implications of Cued Speech for language and literacy development because they observed their own clients making significant progress with language and literacy outcomes (see my interview with Marie Beck Jansen).

Let's also take into consideration the personal statements of many deaf individuals who grew up with Cued Speech. Many of these accounts have been shared on the Cued Speech Facebook group and all point to an inherent belief that Cued Speech truly helped them in their personal lives. Don't believe me? Just go and read for yourself, since some cuers are coming forward to share of their discrimination at RIT/NTID...

But this is the MOST important point to make and one that should put Marschark in his place.

Illinois School for the Deaf is in the middle of a pilot study where it has integrated Cued Speech into its literacy curriculum where the focus is on teaching English skills, especially in reading and writing. The initial results have convinced the administration to move forward in expanding the use of Cued Speech from pre-school to high school (despite opposition from Deaf individuals who believe it is a threat to their way of life). After all, thanks to federal and state laws, evidence-based practices must be used and shown to be effective before being implemented on a full scale in regards to accountability and effective instruction.

At this school we have classrooms where Cued Speech is the primary mode of communication because these students are choosing Cued Speech over sign language (at least in the classroom). Beverly Trezek of DuPaul University, who has published articles on Visual Phonics, has played a critical role in helping ISD modify its programming to include Cued Speech. In a few years or less, you will be seeing these results published and I certainly look forward to seeing Marschark's criticism of the research.

These points are just some of the few examples that serve to demonstrate why Cued Speech is effective in supporting English language and literacy development and why it has such a loyal following.

The question is then how did all these cuers achieve typical language and literacy levels in American English? It's because they were able to access traditionally spoken English in a visual medium that corresponds with English's spoken phonemes.

I'm not saying that Cued Speech makes you smart. I am just making the case that Cued Speech helps equalize the playing field in terms of acquiring English, one of the most irregular languages in the world where many words are spelled differently, but may be pronounced the same. Furthermore, vocabulary can have different meanings in specific contexts, making higher level language skills important in terms of comprehension and expression.

Marschark is well established in the Deaf community as a "respected" researcher because his work has supported the use of visual languages and increased support of parents in helping their children acquire language and literacy levels. Yet his own statements reveal his attitudes in that he believes Cued Speech does not facilitate English literacy development. Marschark's own opinions is based on his own literature review of Cued Speech articles, which admittedly is not as robust as I'd like them to be due to limited sample pools and the type of studies published (which include case studies, comparative studies, longitudinal studies, and so on...).

On page 14 of my independent study (PDF), I discuss a specific comment regarding Cued Speech which reflects Marschark's own attitudes
“Cued Speech is not included because it is not a research-validated practice. The only studies (reviewed internationally by Marschark & LaSasso) that showed consistent and positive outcomes were those done in French-speaking Netherlands. Most of the ‘research’ about Cued Speech is anecdotal or not empirically validated.” (Rose, 2010) 
If Marschark didn't write this himself (after all, my survey was conducted with anonymity), then it's apparent that Marschark's influence has convinced others to buy into this belief that Cued Speech is not a valid means of facilitating literacy acquisition, which is certainly a shame since they are not willing to recognize the personal experiences and rights of cuers.

However, many parents don't necessarily look at the research itself. They meet native cuers and they decide for themselves based on other people's personal experiences and the information provided (mostly by the National Cued Speech Association and its chapters along with experienced service providers). It is not just about research publications (which Marschark refers to as if scientific research was a religion of its own), but the overall body of evidence people look at when making decisions for their own children in terms of communication and language outcomes.

In the end, Marc Marschark has come out and exposed himself as a biased researcher who holds Cued Speech in contempt for what it really is, a viable means of facilitating spoken language and literacy development across many traditionally spoken languages. In a way, Marschark has done something good for the Cued Speech community. He has stoked the fire within cuers who are now passionately speaking up about their personal experiences with Cued Speech, especially those who attended RIT.

The Cued Speech revolution has just begun and native cuers are rising up to fight against oppression and discrimination perpetrated by individuals, including those at RIT/NTID. We will not stand by while others paint Cued Speech and cued language in a negative light when we know the positive benefits of exposing children with hearing loss to a visual communication system that provides verbatim access to traditionally spoken languages, regardless of hearing status.

Let's put Marschark in his place by continuing to share our personal stories of how Cued Speech helped facilitate our language and literacy development. After all, these personal stories are much more powerful than some boring research articles that only members of the deaf and hard of hearing academia read thoroughly with critical analysis. In other words, let us show that Marschark is dead wrong about Cued Speech.

Friday, October 11, 2013

Cuehood: A Deaf Parent's Perspective

A new chapter in my life has begun now that my own daughter, Arabella, was born on October 10, 2013. Already my wife and I have been cueing to her, even though her vision currently isn't strong enough to distinguish between hand shapes. However, we know that we want to raise our child as a cueing family and we've committed to the idea that we will cue everything we say to her because we want to be models of cued language for her so she understands the importance of Cued Speech in our lives.

Already I'm imagining what life would be like five, ten, even fifteen years down the road as a parent with a child whose hearing status is yet to be determined (most likely hearing, but you never know with genetics). One thing that is certain for sure is that we will take every opportunity to immerse our daughter in cueing environments and expose her to a large variety of cuers as to increase her receptive and expressive skills. Who knows if Arabella will end up going down a similar path as many CODAs have in regards to accessibility services for the deaf and hard of hearing. It'd be interesting to see if she ends up being a cued language transliterator, at least to support herself as she pursues her dreams.

Regardless of the passion that my wife and I have for Cued Speech, we know we'll support our daughter as she pursues whatever dreams she has set for herself, even if those dreams have nothing to do with Cued Speech. What we will do is make sure that Arabella understands the importance Cued Speech has in our lives and the role that her parents have played in increasing awareness and availability of resources related to Cued Speech.

In the event that Arabella does have hearing loss, I will work to ensure that Arabella does not have to face the same struggles that my wife and I experienced growing up in terms of acceptance and support from the greater deaf community and professionals. We will make sure that our school district is held accountable for providing quality cued language services and that professionals will be made aware of their own biases regarding different modalities and teaching philosophies.

If we end up facing opposition, I know that we shall overcome these barriers because of our passion, education, personal experiences, and the fact that the law is on our side. No one will tell us that we need to use sign language or that we need to implant her early on or that we need to put her in a center-based program because that's the only way she can receive cued language services.

The cueing community continues to grow because more and more people are recognizing the implications for visual learning and visual languages in terms of achieving goals that were previously difficult to reach without extensive services and exclusion from the mainstream setting. Yet the availability of services is not keeping up with increased demand.

The fact is that many parents of cuers are still facing challenges in the educational setting and they are struggling to ensure that their own children have consistent access to cued language services. Some are still being told that Cued Speech is not appropriate for spoken language acquisition and literacy development. Others are told that sign language services would be more appropriate in the educational setting, regardless of the fact that Cued Speech is the primary mode of communication in the family unit. The research and anecdotal evidence is pointing to the fact that Cued Speech does support specific outcomes related to language and literacy, yet people's personal biases are still getting in the way.

Furthermore, adult cuers still struggle to get access to cued language for health care to legal services and are resigned to using sign language services when there is no other option, even though their desire is to have direct access to spoken language through Cued Speech. Even my wife and I have been frustrated with the accessibility process in regards to our requests for cued language transliterators. There is much work to be done.

Arabella has been and will continue to be my largest source of inspiration for supporting cuers from all walks of life. Because of the struggles many cuers face, I will keep working on behalf of these cuers in terms of increasing availability of cued language services and awareness among the mainstream population for supporting different populations in regards to visual learning and access.

In the end parents chose Cued Speech because they saw the potential for a lifestyle that allowed for ease of spoken language-based communication and wanted to give their children the opportunity to live full lives as independent adults who had diverse skill sets in terms of language, literacy, and socialization. For my family, Cued Speech is a means of access, a way of life, and our core identity as people with hearing loss. Arabella's own identity will also be shaped by the presence of Cued Speech in our lives, therefore developing her own sense of cuehood, regardless of hearing status. She will grow up knowing how important Cued Speech is to her parents.

Monday, October 7, 2013

Conversations with a Cuer: Marie Beck Janssen - A New Cue Mom

I first learned about Marie Beck Janssen after she posted a blog on her experience at Cue Camp Virginia. Through her blog I discovered that Marie hadn't been cueing for long, but was committed to using Cued Speech with her daughter, Mercy Anne. I took the opportunity to contact Marie for an interview in order to get a perspective of someone who is new to Cued Speech, but has taken to it like a moth to a flame.

Here is our conversation regarding Marie's experience with Cued Speech.

AC: Can you describe a little about yourself and your family? 

MBJ: My husband, Anton, is Dutch. I met him during a mission trip to Holland when I was 18. We were married two years later and I lived in Holland for almost 12 years. I have two older children, Victoria 17 and Judah 15.  Mercy Anne is our youngest. To get a good background on her story, please see my blog about her...

AC: In a nutshell, what kind of hearing loss does Mercy Anne have and what was the path you took early on in life?

MBJ: She has profound hearing loss, compounded by the Mondini Deformity. They did not do newborn screenings until after her birth, so we had no idea she was deaf until she was about 7 months old. I went to the doctor with my concerns and they brushed them away. She had standardized hearing tests at 9 and 10 months old, which she, of course, failed. They wanted to do another one at 11 months, but I'd had enough and demanded a specialist. The first doctor we went to said she needed tubes in her ears due to fluid build up and she needed her adenoids removed. This was done but naturally did not affect her hearing. FINALLY, they performed an official test and discovered she was profoundly deaf. The option of a CI was immediately presented to us. After much consideration and prayer, we felt this was the right option. A week before surgery, an MRI was performed which is when they discovered the Mondini deformity. The operation was suddenly in jeopardy. The surgeon was not sure if he could get even one electrode in. We had peace and went ahead. The surgeon was able to wrap the electrodes around a small bone in her ear (that should not be there). He was able to place 7 electrodes, of which 6 are turned on. The bare minimum for speech.

AC: How did you facilitate communication within the family? Did you learn any sign language?

MBJ: Yes, while in Holland, we learned Dutch sign language. Once she had her CI, we combined sign language with speech.

AC: Tell me about your experience with Cued Speech. How is it that you came across Cued Speech?

MBJ: When she was almost 3, we made the decision to move to the States, as we had no choices regarding how she would be educated in Holland. We wanted her to learn to speak and listen... and they were going to put her deaf education with sign language as the primary means of communication. We researched and found CASTLE in Durham, NC. She went to their pre-school and learned English and speech. She then started kindergarten in a normal school. She performed quite well but there were so many holes in her many delays. We would teach her something… she would have it... and then lose it again. It made no sense as she is extremely smart and has a memory that astounds me at times. I knew there had to be a key to unlocking her speech. Last year, we went to CASTLE for a mapping and they asked if we were doing Cued Speech. Uh, no. They told us we should look into [this] immediately. I'm so glad we did. I feel THIS is the missing key. She learned it super fast and her speech is better, she retains more and is missing so much less in the classroom.

AC: What was it like learning Cued Speech?

MBJ: I was intimidated at first, but found it to be much easier than anticipated. I had the system down after two days of training. It is now a matter of fine tuning... and practicing, practicing, practicing. I liken it to learning to type. In the beginning, your fingers have to learn where the keys are… you have to drill and drill. Typing is arduous and slow. But, with practice, you find your fingers flying across the keys without a second thought. So, we learn hand placements... and practice and practice. Hopefully, one day, my hands and fingers will simply go where they are supposed to without much thought.

AC: If you had to describe your experience at Cue Camp Virginia in one sentence, what would you say?

MBJ:  Cue Camp was an encouraging experience filled with insight, training, laughter and support.

AC: Looking back at your experience, how has Cued Speech impacted the dynamics of communication within your family?

MBJ: For Mercy Anne, things are much clearer. She knows what we are saying now and misses less of the conversation. The rest of the family still needs to learn it...I am her VERY SLOW it's hard to get everything transliterated for her but I do my best.

AC: Speaking of transliterators, does Mercy Anne receive cued language services in the public education setting?

MBJ: Yes! We are very blessed to be in a county that truly supports our special needs students.

AC: How has Mercy Anne responded to having transliterators in the classroom?

MBJ: Mixed. It's a process of her realizing how much she NEEDS one. She is very independent, already struggles with being different...and now she has someone following her around everywhere.  Some days she is ON it...watching Lauren like a hawk. Other days, she will ignore her, convinced she can do it on her own. Cue Camp was eye opening to her when she realized so many people cue...not just her.

AC: I completely understand Mercy Anne in regards to the CLT experience. I actually "fired" my transliterators in high school because of my insecurity in regards to socialization and acceptance, but looking back knowing what I know now, I would probably have gone about it differently. Some teachers are difficult to understand while others are very easy, so perhaps flexibility might be an option down the road.

MBJ: Exactly. I feel for her too. It's not easy. And kids can be mean...

AC: The funny thing is, I'm actually facebook friends with some of the "mean kids" that I grew up with. We will get over it and the post-secondary experience seems to be a different ball game in terms of starting anew. What does Mercy Anne want to do when she grows up?

MBJ: She talks about being a teacher, but she is also an amazing organizer of parties/events. I could see her running pretty much anything, including the world. Ha, ha. If you knew her, you would know I'm not exaggerating.

AC: That's funny. Who knows if she'll run the National Cued Speech Association someday? We are always looking for people with that type of energy! Thank you for sharing your experience with Cued Speech. What advice would you give for any parents who have children with hearing loss?

MBJ: Explore your options! There is so much out there today. Realize you are not alone.

AC: Great advice. Thanks so much for your time and I hope to meet you in person at a cue camp in the future...

Mercy Anne (in pink) with new friends at CCVA. (Photo Credit: Marie Beck Janssen)

Tuesday, October 1, 2013

The Cue Camp Experience

Yet another cue camp has come and gone with memories that will last a lifetime. Cue Camp Virginia (CCVA) took place this past weekend, and unfortunately it was a reminder of how many cue camps I have missed over the past five years since I started graduate school in St. Louis and moved to Colorado. In fact, if it wasn't for the cue camp experience, I wouldn't have that strong sense of cuehood that I do today.

The cue camp experience is something one won't forget ever as there's nothing that comes close to it. This year at CCVA there were 7 year old kids learning to cue so they could cue to their infant siblings and adult cuers staying up until the crack of dawn Sunday morning because they just didn't want the fun to stop. The photos posted on the CCVA Facebook group speak for themselves in terms of the tremendous amount of positive energy and inclusivity, especially in regards to diverse modes of communication.

In a nutshell, CCVA is a microcosm of the greater Cued Speech community in terms of how strangers can easily forge new bonds with others and leave camp feeling like they're already part of a community, especially the children. Furthermore, native cuers count down the days to these cue camps as it's considered an annual tradition for these cuers to come together and bond over what seems a sleepless weekend of endless activities. Sunday morning is the most dreaded part of cue camp as it marks the fact that all good things must come to an end. No wonder some of the adult cuers stayed up until 6 am Sunday morning at CCVA. Yet, there's always next year.

Even though the purpose of the cue camp experience is to immerse oneself in a cueing environment, these cue camps make an effort to include everyone and provides access to American Sign Language interpreting. Even people who don't know how to cue volunteered at CCVA because of their experience feeling welcomed and included in the cue community. The cue camp experience truly is an inclusive experience for all.

The cue camp experience also serves to reinforce cuers' own sense of cuehood in realizing their own identities as cuers. For some cuers, their earliest memories include times spent at cue camp as toddlers. For others, the cue camp experience is part of their family legacy as they were basically the reason why their parents started new cue camps in their regions. In fact for some of us, we have come full circle as we have taken on the same roles as our parents in terms of cue camp organization and leadership.

The history of the cue camp experience is actually rooted deeply with the Cued Speech Family Camps at Gallaudet University. Basically at one point, these family camps began to become so large that new cue camps started emerging, with Maine and North Carolina establishing their own cue camps in the 1980's, which continue to this day.

Cue camps are different from other types of camps that service the deaf and hard of hearing in that they truly are for the entire family from infants to grandparents at different levels of fluency. Most camps I've seen have either focused on children or adults or a combination of both, but not necessarily with a focus on offering workshops on learning or improving fluency. It seems that the inherent nature of cue camps as "family camps" serve to reinforce bonds within the family unit as everyone is using or learning the same mode of communication with a lot of support from numerous cued language models.

The 25th anniversary of CCVA and the 30th anniversary of Spring Camp Cheerio (formerly known as Cue Camp Cheerio) will be taking place next year, so these camps certainly will have opportunities for attendees to reflect back on their experiences over the past three decades, especially when they first came to these camps with the intent of learning to cue or experiencing the cue community for the first time. I certainly hope to attend both camps (if not ALL next year...).  

Reflecting on more than two decades of memories from cue camps will make one nostalgic. As a consequence,  I've finally taken the initiative of starting what will hopefully be a new tradition in Colorado - the Cue Winter Carnival. The initial interest is already inspiring and serves as a reminder of how cuers look for any opportunity to get with other cuers and bond with each other while having a good time. The number of people signed up so far is amazing, considering that there are only six native cuers in the state of Colorado that I'm aware of.

2014 is looking to be a most excellent year for Cued Speech with so many cue camps taking place, including Chicago, New York, and Maryland. As use of Cued Speech continues to grow, it should not be surprising to see new cue camps or similar events popping up in other countries over the next decade. Check out the full list of cue camps on the NCSA website and mark the calendar for the cue camp closest to you!