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By: Megan Rose Elliott, Houston, TX

Abstract: An eight-year-old talented young lady with a visual impairment shares with others what it is like to go for an eye exam.

Keywords: Family Wisdom, visual impairments, eye exam, self-determination, medical

A little bit about the author: Megan is a 3rd grader. She lives with her mom, Amber and younger brother, Jacob. Her dad, Trae, her step-mom, Brandee, half brother, Gabe live nearby. Megan was diagnosed with nystagmus when she was 2 months old and Septo-optic Dysplasia a few years later. Even with her vision disability, Megan stays positive and open to speaking about her vision. She speaks to her class each year about her vision needs, and accommodations. She is involved in TaeKwonDo, Champions Baseball, and Superkids at her home church. Megan enjoys reading and writing more than anything. Her life goal is to be a published author and own a library.

megan rose elliottSometimes you have to go to the eye doctor. It may sound scary, but it is actually a lot of fun!
First, you need to get to the eye doctor by car, truck, or bus. Sometimes you get to ride in the elevator. Be sure to act silly in front of the mirrors in the elevator. When you get off the elevator or get to the doctors office, go to the desk to tell them your name, birthday, and why you are there. Next, your mommy or daddy will get a buzzer that buzzes when it is your turn to go to the doctor. While in the waiting area, you can play in the waiting area. Sometimes there are movies, play tables, and books. When the buzzer goes off, it's your turn to go!

When you get to the room, you get to sit in a big chair. The chair has buttons and really cool eye stuff but don't touch it. Those are for the doctor. The nurse comes in first to talk with you and your mommy or daddy.

Sometimes the nurse will put drops in your eyes. They hurt but the drops make your pupil bigger. The pupil is the black part of your eye. The drops have to set in your eyes, so you have to wait awhile. You get to go to a different waiting room, it is a lot darker because the light can hurt your eyes.

The nurse will come back to get you when the doctor and your eyes are ready. The doctor will make you read letters on a TV that is on the other side of the room. The letters get smaller and smaller but try your best. Sometimes he puts silly glasses on you with different things in them. You will usually have to read the TV letters again. He will also shine a light in your eyes. Be sure to be still, listen to his instructions and answer all the questions he asks... do not be silly! The doctor will talk to your mommy or daddy about what he sees and what he wants to do. Sometimes you get told you will get new glasses! When you leave be sure to get the cool sunglasses to protect your eyes from the outside light.

The eye doctor is a really cool place to go.

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By: Molly Roberts, Family Leader and Texas Chargers Treasurer, Denton, TX

Abstract: A parent shares her and her experience attending the Texas Statewide Conference on Education of the Deaf and Hard of Hearing with her son.

Keywords: Family Wisdom, deafblindness, deaf, hard of hearing, learning, communication

My son Christian and I had the opportunity to attend the Texas Statewide Conference on Education of the Deaf and Hard of Hearing (SWCED) this July in San Antonio and BOY am I glad we did! It was an exceptional conference, full of breakout sessions for professionals and parents, including sessions on navigating the IEP process, teaming with professionals and advocating for your child. Not only was this a week for acquiring valuable knowledge, it was an opportunity for creating special memories between Christian and me.

Christian has CHARGE Syndrome and is dual sensory impaired. He attends a Regional Day School for the Deaf Program close to home. For years I would hear his educational team talk about attending SWCED, but I had not considered it for parents. At the last minute I decided to read more about it and found out that not only did they have multiple sessions geared for parents, the registration rate for families was extremely low plus they provided childcare. I decided this would be a special bonding opportunity for Christian and me. We packed our bags and headed down to San Antonio. Little did I know we were in for a huge surprise!

When we arrived I decided to look at the sessions and I noticed that David Brown, the CHARGE Syndrome "guru", was going to be speaking. I was like a kid on Christmas Eve! Somehow I had managed to luck out and wind up with the opportunity to visit with David Brown one on one!! Not only that, he offered to sit down to lunch with me, Christian and his educational team. It was truly a once in a lifetime opportunity that I will never forget.

No matter how many times I listen to David Brown talk about the sensory system I learn something new. I leave his lectures amazed at the resilience of individuals with multiple sensory impairments. Their behaviors are not maladaptive; they are adaptive, as they are seeking sensory input. As professionals and parents our role is not to remove the behavior, but rather replace it, if possible, with a more appropriate sensory solution.

Principal at New Mexico's School for the Deaf, Dr. Ron Stern and his wife, Hedy Udkovich Stern, spoke about guiding principles for parents of deaf and hard of hearing children. They themselves are both deaf and have children and a grandchild who are deaf. They encouraged parents to communicate fluently with their children and ensure they are active participants in their homes and community. Their lecture was truly motivating and inspired me to find new ways to include Christian in family discussions and community outings.

Christian had an amazing time as well. The Texas School for the Deaf did an excellent job orchestrating childcare. The volunteers were able to communicate with Christian and they included him in all the activities. During the times we were not busy at conference, Christian and I made many special memories. We visited the San Antonio Zoo and Morgan's Wonderland, saw family, checked out the Alamo and ate many yummy meals followed by tasty treats. We also ventured down to the River Walk for dinner with David Brown and other friends from the Texas Charge community. It was such a special week and undoubtedly, one I will never forget. I intend to make SWCED a yearly experience for Christian and me and I highly recommend other families take advantage of this exceptional resource.

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By: Andrea Wade, Parent

Abstract: A parent describes the benefits of her family attending a national conference that is specific to her child's eye condition. The wide variety of session topics offered strategies to use at school, home and in the community so that her child will be included in activities.

Keywords: family wisdom, family education, albinism, visual impairment, inclusion

My name is Andrea Wade and my husband, Sean, and I have a 5-year-old daughter, Elizabeth, who has albinism. Albinism is an inherited condition in which people have little or no pigment in their skin, hair and/or eyes. They have inherited genes that do not make the usual amount of a pigment called melanin. About one in 17,000 people in the U.S. have some type of albinism.

travels 1Although Elizabeth was born with a headful of white hair, we didn't learn that she had albinism until she was about six weeks old. We understood that we needed to take necessary precautions to protect her while she was out in the sun by wearing sunscreen, sunglasses and protective clothing. One issue that we were completely unaware of is that people with albinism always have a visual impairment and it is not something that is correctable with glasses. The degree of visual impairment varies, but many people with albinism are considered legally blind. At our most recent visit to the eye doctor, Elizabeth's corrected vision was 20/200.

Since learning that Elizabeth has albinism, we became members of a wonderful organization called NOAH (National Organization for Albinism and Hypopigmentation). NOAH hosts a national conference every other summer and this past July was our second time attending the conference. The conference this year was in San Diego and we decided our 3-year-old son, Joseph, who does not have albinism, would now be old enough to enjoy the trip as well.

The NOAH conference consists of a variety of workshops for parents of children with albinism and adults with albinism, as well as a number of planned social activities. They also have a great kid's program that has activities for kids from toddlers to teenagers. Both Elizabeth and Joseph got to play and spend time with other children their age. Although we had been to the conference two years ago, we are at a different stage in our learning and knew there would be new topics and discussions to enjoy. I also noticed our interests in certain topics had changed since the last conference.

My husband was interested in technology at the conference two years ago. This conference he attended more of the social specific sessions. He went to Dealing with the Negative Comments, Building Self-Esteem in your Child, and the Joys and Challenges of Parenting. I found myself more interested in the sessions covering education. I enjoyed Practical Applications to Success for Students with Albinism, Know O&M, and Visual Access in Today's Schools.

One session that particularly impressed me was No O&M? Know O&M! It is easy to take this for granted but O&M (Orientation and Mobility) training really helps a person learn to orient him or herself and navigate the surroundings. The skills taught are ones that can be applied to any environment. The presenter also pointed out the importance of utilizing what you have in the environment such as landmarks, maps, and asking for assistance. I realized this just the other day as we were driving our kids to go bowling. Elizabeth said, "We are getting close to the bowling alley because I can see that yellow sign." This was the first time I had heard her say this and I realized she picks up on more than I realize. She may not be able to read the sign, but she knows when she sees that yellow sign, we are close to our destination. One other excellent point from the session was that O&M really needs to be done in an environment the person is unfamiliar with—if they already know how to get around their home, it won't look like they have any skills that need to be worked on.

A new session offered at this conference that my husband and I both attended was 1Touch. It is a self-defense program that was developed to specifically address the needs of those who are blind or visually impaired. The session was interactive with the instructors and we learned the appropriate response and various techniques to protect yourself.

I was also able to attend a workshop specifically for mothers of children with albinism. It is amazing how good you can feel being in the same room as other parents who share similar experiences. There were some friends from the last conference and there were new faces as well. For me, the mother's workshop is a great way to explore your feelings in a safe environment. I love hearing how other mothers have overcome certain challenges and the various successes they have had. We laughed, we cried, and we enjoyed getting to know one another and sharing our stories.

When we first joined NOAH, we knew attending this conference would be a valuable experience for our family. Over 800 people traveled from all over the country and the world to attend this conference. In addition to the sessions, some of the best parts of attending were the casual conversations while at breakfast or lunch, as well as the party on Saturday evening where there is dessert and a DJ! It is so much fun to watch the kids dance and enjoy themselves.

When Elizabeth was born five years ago, we had no idea what adventure we were about to embark on, but we are on the path we were meant to be on and it has been an amazing journey so far...and we look forward to what is yet to come!

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By: Diego and his mom, Veronica Alvarez, Round Rock, TX

Abstract: A proud mom shares her son's story about his rock climbing experience.

Keywords: blind, rock climbing, Enchanted Rock, Family Wisdom, Expanded Core Curriculum

Editor's note: TAPVI (Texas Association for the Parents of Children with Visually Impairments) is a non-profit organization of parents and professionals committed to providing support to families of children who have blindness or visual impairments including those with additional disabilities. The board has been organizing Family Fun Days across Texas. These events provide opportunities to develop recreation and social skills, components of the expanded core curriculum. Become a member of TAPVI and your family can be part of the fun. Information about joining this organization can be found at

The next writing is from my ten-year-old son, Diego. He was born at 24 weeks and developed ROP Retinopathy of Prematurity (ROP) and is legally blind. He is learning to read and write in braille and uses a braille notetaker. It is amazing to see his little fingers go so fast over the keys of the BrailleNote. It's been a long journey to accomplish this step in his academic skills and we are so proud of him. We took a trip to Enchanted Rock Park with TAPVI and he wrote about his experience for school homework.

enchanted 1In Diego's words:

On a beautiful Sunday my family and I went to an Enchanted Rock adventure! First on Saturday we traveled to Fredericksburg, Texas in our car. I was with my family and other families with VI kids. Then we went to have dinner at a pizza place.

The next day we arrived at the Enchanted Rock Park. We climbed the steps up the mountain. We took breaks because we were tired. We hiked to the top of the mountain. When we got to the top I felt the wind. The rock is made of granite. I saw the valley of trees. I heard the wind blow. We took pictures too.

It was a fun day for me for the first time to hike on a mountain. I recommend to all the people to go and explore the Enchanted Rock Park.

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By: Barbara J. Madrigal, Assistant Commissioner, DARS-Division for Blind Services (DBS)

Abstract: In this article Assistant Commissioner Madrigal discuss how the Division for Blind Services, TSBVI and Educational Services Centers work together to provide quality training to help family members become well-informed competent leaders.

Key Words: Division for Blind Services, TSVBI, Family Leadership Training Series, independence, self-sufficiency

Editor note: Assistant Commissioner Barbara J. Madrigal submitted this article before her retirement in September 2014.

Many of you are familiar with the proverb, "Give a man a fish and you feed him for the day; teach a man to fish and you feed him for a lifetime." No saying or proverb could better represent DBS' approach and belief in training. Training is the cornerstone to independence and self-sufficiency. Training at DBS comes in a variety of forms. It may be as simple as showing a parent the many ways to use a developmental toy with their infant, to the comprehensive training an adult receives from a DBS specialist. DBS focuses on the needs of the consumers to be successful and to help them reach their goals. We provide training in individual and group settings. In the Blind Children's and Transition programs, we not only provide training to consumers, we often include the whole family in training sessions depending on the information and skills being taught.

Providing this training leads consumers to be empowered, to be their own advocate, determine the course they want to follow, reach their goals, set even bigger goals and be an excellent role model for their friends, family and community. We see amazing successes and incredible potential daily. We know that within our consumers lie new leaders in the area of blindness and visual impairment.

For a number of years the Blind Children's and Transition programs have been involved with the Texas School for the Blind and Visually Impaired (TSBVI) Family Leadership Series. TSBVI, DBS and various Education Service Centers work together to help family members become well-informed competent leaders. Parents have the opportunity to attend the following workshops/training sessions:

  • Eye Play – designed for parents with younger children (birth to five years). This training is an overview of the special education system and how to become an effective partner. It is full of basic information, giving parents an opportunity to meet other parents of children with visual impairments; it also encourages families to envision the possibilities for their children. Family members become knowledgeable about active learning techniques and materials that teach concepts leading to communication and literacy for children with vision and/or hearing loss, including those with other disabilities.
  • IDEAL Partners – Quality Education for your Child with Sensory Impairments - This training in an in-depth workshop on the special education process, how to read and understand their child's Individualized Education Program (IEP), discover strategies that leads to positive outcomes for their child's education and to build their confidence in their role as a member of their educational team.
  • Personal Family Leadership Series – This four weekend training is designed not only to help parents and other adult family members (siblings, grandparents, aunts, and uncles) in becoming more knowledgeable and stronger advocates for their children, but also how to step outside their comfort zone to be leaders in the community. The theme of the training is Know Yourself, Know Your Child, and Know Your Community. It provides training in the areas of peer mentoring, raising a child with a visual impairment and deafblindness, quality educational programming and utilizing community resources. The goal is for family members to join with others to improve and shape services not only for their child, but other children across the state.
  • Family Leadership within Different Systems Series – this is the advanced level of the family leadership training. Over the course of three weekends participants meet leaders in the areas of legislative, medical, state agency, community, and educational systems; learn about various leadership opportunities within existing systems; and, broaden their understanding of the issues surrounding visual impairments and blindness beyond their own child. In this training the participants design, develop and complete a personal project that will impact services and support for children with visual impairments.

The Family Leadership training began at TSBVI in 2004 as part of the Texas Deafblind Project grant initiative. Over the years the training grew and included families of children who were blind and visually impaired. In the past ten years more than 160 parents have participated in the training. Family Leadership is not just about educating; it is much more. Parents learn to match their passions and talents to leadership opportunities so they can effectively partner with others in accomplishing their goals. Some of the powerful and exciting things that have come from the Leadership training include:

  • Developed the Texas CHARGERS, a statewide organization for families who have children with CHARGE Syndrome, which hosts an annual family conference and is active in both state and national efforts to improve the lives of people living with CHARGE Syndrome.
  • Established non-profit organizations that provide services to children with visual impairments
  • Assumed leadership roles within the Texas legislative process that lead to the passage of numerous bills that improve services for Texans who are blind, such as the deafblind/multiple disabilities waiver and the new orientation and mobility law requiring an evaluation on all students receiving vision services.
  • Served as board members for many community and state organizations such as the Deafblind Multihandicapped Association of Texas (DBMAT), the Texas Association for Parents of Children with Visual Impairments (TAPVI), the TSBVI Board of Directors and the Texas Parent to Parent Board of Directors.
  • Designed and presented breakout sessions at multiple training events and conferences such as the Texas Parent to Parent Annual Conference, Texas Focus and the International AERBVI Conference.
  • Served within their local school districts on boards and advisory committees.

People across the nation have been watching Texas and have borrowed from our success. Family leadership trainings similar to the TSBVI/DARS leadership training have been developed in many states including New York, Pennsylvania, and Washington. It is exciting to know that across this great nation more and more consumers and family members are making the world a better place for people who are blind and visually impaired.

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Press Release

Abstract: This article provides information about a new resource on the ECC available from AFB Press.

Key Words: Blind, Visually impaired, Expanded Core Curriculum, students with visual impairments

For teachers of students with visual impairments, heading back to school means thinking about the expanded core curriculum, and how to implement it in the classroom. In support of this effort, AFB Press is proud to announce the book release of ECC Essentials: Teaching the Expanded Core Curriculum to Students with Visual Impairments. Learn about our new resource for teachers, ECC Essentials: Teaching the Expanded Core Curriculum to Students with Visual Impairments, Carol B. Allman and Sandra Lewis, Editors and Susan J. Spungin, Consulting Editor. ECC Essentials is available for order now at

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Excerpts from the Council for Exceptional Children DVIDB (

Abstract: This article provides information on the deafblind portal on the Council for Exceptional Children's web site.

Key Words: Council for Exceptional Children, deafblind, blind, visually impaired

The Council for Exceptional Children, the Voice and Vision of Special Education has established a professional home for deafblindness in the Division on Visual Impairment and Deafblindness. This portal promotes partnership in professional development and advocacy. It provides an opportunity for university/college instructors, students, teachers, interveners and families to learn about and share current developments and innovations in deafblindness. The portal features news and events and has a Deafblind Community Google Group.

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By: Cyral Miller, TSBVI Outreach Director

Abstract: The Unified English Braille Code (UEB) creates updates to literary Braille in English. Braille readers and teachers need to become familiar with the changes that have been recently adopted.

Key Words: Effective Practices, blind, Braille, literacy, reading, UEB

Reading and writing literary braille in English is undergoing an important change. What's coming is a modified braille system known as the Unified English Braille Code, or the UEB. The UEB is based on the English Braille American Edition so current braille readers will not have to relearn how to read; there are differences in some contractions and new formatting and punctuation rules as well as some new symbols. Think of it as a system upgrade rather than a brand new code. The United States is a relative newcomer to this code. Even though it was first discussed in 1991 by the Braille Authority of North America, UEB was subsequently adopted by most English speaking countries that are part of the International Council on English Braille (ICEB) but not until 2012 did BANA vote to adopt UEB for literary braille - a vote that included maintaining the use of Nemeth code for mathematics and science notation . Since that historic vote, there have been national and state implementation groups actively designing timelines for changes to be phased in by braille producers, test developers and producers, transcribers, teacher preparation programs in their curricula, staff development training materials and other systems involved in braille for reading and writing in English. Information for this article and many resources are available at the BANA website:

Why change the code?

In addition to the "complexity and disarray" involved in navigating between multiple codes that Drs Cranmer and Abraham Nemeth cited in their call for unifying English braille codes in 1991 , the growing use of computers since that initial discussion have led to both increased capacity to access braille, new kinds of computer-related terminology to convey, and greater need for easy print-to-braille software systems. There have been multiple adaptations to braille rules needed to accommodate the increasing requirement to express new kinds of information and print formats all while using the same 6 dots. Over the years, different English-speaking countries had evolved their own specialized rules and transcription formats. This limited access across nations even when the language was the same and the internet has broken down many geographical boundaries. The use of computer terms such as URLs had not been foreseen in the development of literary braille codes.

When does this start?

Switching all the interlocking systems that are part of producing braille materials is not an overnight process. On the national level, it was determined that a goal will be to have made substantial progress in implementing UEB for general use by January 4, 2016 (Louis Braille's birthday!). The American Printing House for the Blind, a major producer of braille and educational literacy materials, published its timeline for transition to UEB in July 2014, which states that APH will begin producing new textbooks in UEB in the school year 2015-2016. Other states and other producers have been developing their own plans. Texas held a statewide stakeholder group meeting in November 2014 and will publicize state-related timelines by early in 2015. On their website, BANA states that it "recognizes that the implementation of UEB will require major adjustments to the infrastructures that produce, deliver, and teach braille, as well as time and strategies for braille users to become familiar with changes in the code. BANA continues to work with leaders throughout the field to build a carefully designed timeline and coordinated plan. Detailed timelines are under development by individual organizations, and transition efforts are now being initiated."

It's important to remember that even while UEB is being phased in, many existing published materials are going to be in active use for many years that are not in UEB. There will clearly be a transition phase where different braille codes will be in use at the same time. The timelines that are being developed in each state are meant to ensure the smoothest possible transition, and that students and prospective VI professionals in training will be tested in the codes in which they have been taught.

What are the main differences between UEB and the code we are currently using in the US - the EBAE?

A comprehensive document that outlines the changes in the code is available at:

The most obvious changes are dropping 9 contractions: by, into, to, ble, com, dd, ation, ally and o'clock. The 'snugglers': A, and, for, of, the, and with will now be spaced separately. In general, the UEB is built on the logic that a symbol must stay the same in all contexts, so there are changes in punctuation and formatting in order to eliminate for example, that a period at the end of a sentence is noted with dots 256 but then that same set of dots is a dd symbol when found in the middle of a word. In print, the use of different visual and graphic organizers has become increasingly important for understanding the information on a page (or online). There are therefore other changes with UEB that are designed to provide information about the print formats to the braille reader. For example, there are unchanging symbols for backslash, bullet, and tilde, dagger, open and closed brackets, and new ways to indicate that a whole selection is in italics or bold or underlines. Web and email addresses can be written in UEB, with no switch over to computer code. These are just a few sample changes.

What kind of training will be available in UEB, who will teach it and what reference materials will be produced?

As noted above, at both the national level and the state level, there are groups seeking to develop training materials. There are already a number of useful training tools developed by other countries that switched to UEB before the US. Several of these are listed at the BANA website:

In Texas, the TSBVI has begun producing webinars with introductions to UEB and there are plans for offering online study groups for teachers as well as instruction for braille producers in the near future. Look for the archived webinars at the On-the-Go section of the TSBVI The Education Service Centers will be offering training at the regional level as well.

Will UEB be available through refreshable braille displays? How will they be updated?

All braille translation software, such as Duxbury and Braille 2000 allow both UEB and English Braille American Edition (EBAE) braille for translation embossing. If a student uses a refreshable braille display, such as the Focus Blue, Braille Edge 40 and Brailliant with any screen reading program (including JAWS and VoiceOver) they can easily switch between UEB and EBAE. Notetakers such as BrailleNote, BrailleSense and Pacmates with refreshable braille displays also can switch between codes. The Mountbatten and other electronic braillewriters have support for entry and output in UEB.

Can I try UEB to see what it is like?

Of course! Go to the BANA website and look for the section with example documents in UEB:

I have questions! Where do I turn?

At this time, the very best source for a wide variety of resources on the UEB is the BANA website. BANA committees are developing new materials and keeping the site current. Each state will have a UEB implementation plan. The Texas plan will be posted widely on the ESC 11 Statewide Leadership for Blind and Visually Impaired Services Network webpages, on the TSBVI website, and other ESC VI related sites.

A Publication about Visual Impairments and Deafblindness for Families and Professionals

Family Wisdom

All About The Eye Doctor, by Megan Rose Elliott
Abstract: An eight-year-old talented young lady with a visual impairment shares with others what it is like to go for an eye exam.

Coming Home to Disability: One Sibling's Story, by Elizabeth Lewis
Abstract: Through the lens of anthropology, the author shares her journey toward embracing being part of the disability community as both sibling and professional.

The Texas Statewide Conference on Education of the Deaf and Hard of Hearing: A Parent's Perspective, by Molly Roberts
Abstract: A parent shares her and her experience attending the Texas Statewide Conference on Education of the Deaf and Hard of Hearing with her son.

Travels to San Diego: A Family's Experience at the NOAH Conference, by Andrea Wade
Abstract: A parent describes the benefits of her family attending a national conference that is specific to her child's eye condition. The wide variety of session topics offered strategies to use at school, home and in the community so that her child will be included in activities.

Enchanted Rock Adventure, by Diego and his mom, Veronica Alvarez
Abstract: A proud mom shares her son's story about his rock climbing experience.

Effective Practices

UEB is coming to Texas! (What is it and what does that mean?), by Cyral Miller
Abstract: The Unified English Braille Code (UEB) creates updates to literary Braille in English. Braille readers and teachers need to become familiar with the changes that have been recently adopted.

Intervener Basics: Myth, Legend, and Reality, by David Wiley
Abstract: There are some misconceptions associated with using interveners to provide support to students with deafblindness in educational settings. The author attempts to clarify intervener myths with the realities of the intervener model.

News & Views

Building Statewide Capacity through Electronic Media, by William Daugherty
Abstract: Superintendent Daugherty explores the opportunities and benefits of distance education through broadcast technologies.

Leadership Training, by Barbara J. Madrigal
Abstract: In this article Assistant Commissioner Madrigal discuss how the Division for Blind Services, TSBVI and Educational Services Centers work together to provide quality training to help family members become well-informed competent leaders.

AFB Press Launches NEW book, ECC Essentials: Teaching the Expanded Core Curriculum to Students with Visual Impairments, Press Release
Abstract: This article provides information about a new resource on the ECC available from AFB Press.

2014-2015 TSBVI Outreach Programs Update, by Cyral Miller
Abstract: In this article, Ms. Miller shares information about the new and exciting things happening at TSBV's Outreach.

Deafblind Portal, excerpts from the Council for Exceptional Children DVIDB
Abstract: This article provides information on the deafblind portal on the Council for Exceptional Children's web site.

By: Elizabeth Lewis

Abstract: Through the lens of anthropology, the author shares her journey toward embracing being part of the disability community as both sibling and professional.

Keywords: family wisdom, sibling, deafblindness, disability community, anthropology

There's an old saying among anthropologists that you have to spend time in another culture before you can truly understand your own. The unspoken footnote to this bit of wisdom is that you won't understand either place until you come home. The foreign makes the familiar intelligible in new and previously impossible ways.

I first experienced the feeling of "coming home" to disability as an undergraduate researcher in Ghana. Pushed by my parents and encouraged by a family friend who was an international deafblindness expert, I had been careful to set everything up in advance for my short-term project on blindness and social stigma. Our friend's stories of working with families and educators on deafblindness issues in Asia and Africa dazzled me, and I was curious about following in her path, even for only a short period. It would be the first of many research experiences with disability after growing up with a younger sister, Katie, who has CHARGE syndrome and deafblindness.

On the first day of my project, I hopped a taxi from my temporary home at a local hostel to the office of the Ghanaian Association of the Blind. It was rush hour and Accra's streets were packed. People selling gum, cigarettes, and compact discs wove their way between stalled traffic at lights, along with children and adults begging for money. I noticed adults with physical disabilities crawling on the sidewalks, flip flop sandals positioned carefully on their hands and feet to protect them from the rough ground. I had been told of this and had even seen pictures, but the image still shocked me.

I arrived at the Association of the Blind and tried to make my way through the complex in search of the appropriate office. As a 21-year-old white American woman, I stood out. People were curious. Two men in their twenties approached me. They were not verbal, so they began signing to me. Although I did not understand most of what they said, we all grinned widely as we tried to communicate across the layers of barriers. They led me around the facility to the office where I was to meet an internationally respected disability expert, and we said our goodbyes. I recall a feeling of utter naturalness and comfort. It hit me: I was in the right place, in every sense.

This was the first time I truly felt the universality of my position as a person who grew up in the disability community. Until then and, indeed, for many years after, my feelings about disability in my academic and professional life were marked by ambivalence. While part of me perhaps always knew I would end up dedicating my career to disability issues, I was reticent – scared, even – about committing. Was I really ready to welcome disability into my work life, since it would always be a fixture of my personal world? And, if I didn't want to be a special education teacher or service provider, what could I possible do?

cominghome 1I had been immersed in disability worlds since the age of four, when my sister was born. Although we did not receive a proper diagnosis for many years, Katie had CHARGE syndrome, a rare genetic condition found in about one in 10,000 births. I grew up surrounded by children with disabilities and their families. I visited the local parent resource center with my mom, helped my parents flip through binders of special education law during our struggles to obtain appropriate school services, and I accompanied my parents on countless visits to doctors, specialists, and therapists.

As a stereotypical older sibling, it was my job to help and I took pride in it. Still, as is typical, I became less involved as I got older. I was busy with high school stuff – classes, extracurriculars, and friends – and then I went away to university. My love for Katie was unwavering, yet I noticed a growing public-private divide in my relationship with disability. It had become something that was confined to my family life, but my academic and personal realms were increasingly separate. Or were they? Although I felt that way at the time, looking back I can see clearly that I flirted with disability issues as a vocation throughout college. I simply wasn't ready to commit, nor did I know where I fit in.

During my semester in Ghana, I was shocked by the genuine interest – curiosity, even! – that my peers and professors showed for my research. It had never dawned on me that people who were not personally connected to disability might care. As a sociology and anthropology major, I had no idea that disability was even a viable area of study. I did not know of any scholars in traditional academic areas who focused on disability, nor had I read or even heard of any books or articles on the topic. While gender, sexuality, and race were fair game in terms of identity politics, disability somehow remained in the shadows. Even if I'd been ready to pursue an academic career researching disability, I did not yet know it was an option. I had no models.

In the years that followed, I largely forgot about disability outside of my family life. I worked abroad briefly after graduation and then returned to the U.S., where I embarked on the typical life of many in my peer group. I lived in a large city filled with countless restaurants and bars, worked diverse jobs of various interest levels, hung out with my friends, and met the incredible man I would later marry. For the first time in my life, I eschewed all things serious. I didn't even do volunteer work! And I was totally and utterly bored.

Young and relatively mobile, I took my meager savings and moved to South America in search of more. After a position as a preschool English teacher in Ecuador ended, I wandered down to Bolivia in search of volunteer work and adventure. I began helping out at a residential center for children with disabilities – many of whom had been abandoned – and also orphans. When I first toured the facility, I once again encountered that unmistakable sense of knowing. Disability was home.

The experience opened my eyes in new ways to disability realities I had not encountered. I saw multiple children whose disabilities – physical and intellectual – were inseparable from abuse in their former homes. Most of the kids never learned basic living skills, much less anything academic. Well-meaning and overworked staff, many of whom were just teenagers themselves, tied children to wheelchairs to keep them in place.

I will never forget the day that my now husband, who was with me, realized that his favorite student could walk with assistance and did not need to stay in her wheelchair. Little Magdalena, who was known for giving wet, sloppy kisses on the cheek, spent her mornings over the weeks that followed dancing with my husband. She loved him. We marveled at her secret abilities and wondered what else she might have been able to do with adaptive technologies, educational funding, and family and community support.

I came back to the U.S. with a new sense of direction. I began an interdisciplinary Master's degree program and promptly fell in love with a class on the anthropology of disability. I had not known the topic even existed! I finally encountered disability studies literature, as well as social science and humanities works on disability. I was hooked.

cominghome 2I read everything I could find, wrote a thesis about parent advocacy efforts, and set out to find my dream job in disability. Unfortunately, it remained elusive and I wandered elsewhere, dedicating myself largely to issues of education, migration, and human rights. As always, I was drawn in by the individual faces and stories behind broader lived experiences, yet I had little interest in working my way up a nonprofit ladder. I wanted to stay in the thick of it, to immerse myself in life histories and absorb everything people would reveal. After years of fighting it, I gave in: it was time to get a PhD in cultural anthropology.

Five years later, I can finally say that my old ambivalence is gone. I have immersed myself in the formal study of disability and am pleasantly surprised by the support I have received from the academic community and beyond. I spend my days researching, reading, writing, and talking about disability issues, and I am lucky to be involved with some fantastic local organizations. I have conducted research in Central America and the U.S., presented papers at multiple conferences, and I am in the process of writing a dissertation on family experiences with complex or unidentified diagnoses. It has been a long road, but it all circles back to Katie.

Every aspect of my work is informed by my own experiences as a sibling, and I am honored and humbled by families' willingness to grant me a small window into their stories. I feel so lucky to be part of a nascent but growing group of social science and humanities scholars working in the area of disability. I am also steadfast in my commitment to generating scholarship that reaches beyond the walls of academia. I hope that my work will be read by families, organizations, professionals, and policy makers. As a sibling-researcher, these are not abstract aims. I literally think about them every morning as I sit down to write or each time I meet with other families. These goals animate every step I take.

cominghome 3I still do not know how I fit into the dominant perceptions of what it means to be a sibling of someone with disabilities. My parents were warned when Katie and I were young that I would likely be jealous or resentful of her, since she would receive so much attention because of her disabilities. This always struck me as ridiculous, even as a child. Did experts really think that I was selfish enough to resent my parents' attempts to find new therapies or educational techniques? Although other siblings have criticized my outspokenness on this issue, I remain adamant. Do I think siblings should be allowed to feel jealous, anxious, or confused? Of course! All siblings have the right to these feelings, regardless of whether disability is in the picture. As the sister of someone with disabilities, however, I have never appreciated the assumption that my sibling relationship was fundamentally marred by resentment and jealousy. Because, for me, it was never the case.

Another concern was that I might develop so-called problem behaviors and act out in response to our family's struggles. In reality, I never felt like that was an option. My family had our hands full and simply didn't have room for me to do poorly in school or get into trouble. As an adult, I am not convinced that this pressure was a bad thing. Did I miss out by pushing myself to make good grades and not get caught up in boys, partying, or risky behaviors as a teenager?

The discourse on siblings still hinges on a curious paradox: whether we are too good or too bad, we will still be pathologized. Our behaviors are all too often explained in terms of our sibling status. This is an extremely problematic gap in understandings of who we really are as a diverse group of individuals with different goals, anxieties, and hopes, who happen to be unified by our sibling status. Can I explain many aspects of my personality in terms of my experiences with Katie? Yes, but that doesn't make those explanations correct, nor does it reveal anything about how I might have turned out in a different family context.

Even today, I struggle to express my childhood feelings about Katie's disabilities for one simple reason: Katie was normal to me. I knew nothing else and, even in the earliest weeks of Katie's life, when we did not know if she would survive nor did we understand the complexity of her intellectual and sensory disabilities, I was fiercely proud of her. She was my sister. She was the only sister I had, the only sibling relationship I would ever know.

As I prepared to enter high school, my family became involved in a heated dispute over Katie's educational rights. I do not recall speaking to any of my friends about it until my final year of school, but that silence was part of a broader social protocol. My peers and I restricted our conversations largely to things like boys, clothes, and gossip. I later learned that some of my friends had faced serious family struggles during that time – addiction, mental illness, infidelity, domestic violence – yet we didn't discuss these experiences until many years later. Perhaps disability had less to do with my silence that I used to think.

Even at the peak of my family's legal battle to meet Katie's educational needs, the only profound feelings of sadness and anger I had were never directed at Katie, but always toward the failure of the institutions we relied upon to meet our needs. The key is that these needs were all of ours. I learned early that the perfect family's depicted on television are nothing but fiction, and in reality we all have our struggles. I realized, too, that we live in a world in which people are literally cast aside. This was probably the hardest thing to process as a teenager, and I recall a palpable sense of grief for the naïve optimism I saw in many of my peers.

cominghome 4Looking back, the biggest emotional struggle for me as a teenager was my lack of a network of other siblings to relate to. Not only did I have no one to talk to who could truly relate to my experiences, but I had no models. This was before the days of Facebook and disability listservs, and I would not learn of Sibshops until years later. The only sibling support groups in our area were for brothers and sisters of kids with autism, so that didn't work.

Without anyone to follow, I simply did the best that I could. I winged it. Once I began college, I made an explicit effort to open up about my experiences with Katie from the start. I learned very quickly that people were genuinely interested in hearing our story, and my previous silence lifted.

Looking back at my circuitous path, I should have known that I was a researcher at heart. My passions are meeting families, hearing stories, writing what I see, and sharing these powerful disability realities with people who might not encounter them otherwise. My aim is, and perhaps has always been, to get the word out. I want to learn, witness, and disseminate.

I want to be part of a small, but growing, effort to push disability from society's margins and into mainstream discussions. I want to do everything I can to make sure that other siblings do not feel as isolated or singular as I did when I was younger, and to encourage scholars and journalists to take disability seriously – not as an object of pity or a source of stigma, but as a very real aspect of the human experience that will touch each of us in some way.

I want to tell Katie's story, to use my own family's experiences and those of others like us, to effect change and make people listen. It took me until now, as a married mother in my thirties, to really embrace this as my professional destiny, but I think I can finally say that my old ambivalence is gone. Let's do this.