Overcoming Two Obstacles:
Technology for Students who are Deafblind
by Meenakshi Pasupathy
Jon is an amazing 16-year-old who is a sophomore at Mountain Lakes High School. He is very enthusiastic and creative, has an excellent memory, and enjoys a variety of extracurricular activities that defy expectations of people who are deafblind, including rock climbing, golf, boxing, bowling, and playing the drums. Jon is profoundly deaf in both ears and is legally blind with 20/400 acuity. He has been diagnosed with Leber’s Congenital Amaurosis, a genetic condition that is known to cause blindness. Because of his deafness, he attends the Lake Drive Program for students who are deaf/hard of hearing at Mountain Lakes High School. Jon is the only deafblind student in the program. To accommodate his blindness, the names of all rooms and facilities are marked in braille.
Jon communicates using sign language and often relies on tactile signing, especially when he is unsure about the information presented or when he is tired. He began tactile signing when he was nine years old, at which time his language development took off. Jon’s inability to see compounded the problems he faced in acquiring language.
Jon currently takes courses in geometry, science, art, literature and English. He is in self-contained classes for everything except art and receives one-on-one instruction for his language classes. Jon enjoys art and is in his second year in a mainstream art class. His mother commented that “he is developing a style,” which could be noticed in the samples included in his portfolio. Jon would love to enroll in wood shop one day.
Jon’s Support Team
In addition to his classroom teachers, Jon is supported by an interdisciplinary team. The New Jersey Commission for the Blind and Visually Impaired provides an educational consultant, Ragan VanCampen, who visits Jon at school three times per week. He works with a one-on-one teacher of the deaf, Diane Hewitt, on his language and communication development. She also serves as his one-on-one teacher for literature and English classes and acts as his sign language interpreter in other classes. The Commission has hired Linda Aldrich, a certified braille transcriptionist who also happens to be an art teacher at the high school, to translate school-related material into braille. The final member of his support team is his mother, Kathy, who is actively involved in his education. His access to and effective use of assistive technology, as well as the other excellent services that Jon receives, would not be possible without the concerted and coordinated efforts of these four individuals.
Although he is blind, Jon is a very visual learner. He uses his limited vision extremely well, and his mother credits this ability to intensive, early intervention services when his brain was very young and malleable. Jon was enrolled in St. Joseph’s School for the Blind’s Early Intervention Program in Jersey City when he was 15 months old. His mother reports that he had two phenomenal teachers whose skills in teaching young blind children helped establish all the right connections as his brain was developing. Ms. VanCampen described Jon as a “mixed media learner,” that is, he reads both print and braille. Since his eyes fatigue quickly, braille is his preferred medium.
Jon’s Technology Tools
Jon uses an array of devices to assist him in his education. When I visited him in his school, he cheerfully demonstrated them to me. He uses a BrailleNote (Humanware - www.pulsedata.com), which is an electronic notetaking device.
The BrailleNote is available with a Braille keyboard (the BT version) or a QWERTY keyboard (QT version) for input. Jon uses the QT version which provides output in Braille, print or speech. It runs on a Windows operating system. The device has a refreshable braille display so that the Jon can read his work in braille even as he is inputting the information using the QWERTY keyboard. He can control the rate of the refreshable braille display. Jon’s mother had taught him keyboarding by placing braille stickers on a regular keyboard. Jon is now a proficient typist.
A laptop computer is connected to the BrailleNote. The information Jon enters into the BrailleNote is displayed on the laptop screen so that the teacher can follow Jon’s work. The BrailleNote Jon was using during my visit was a loaner from the Commission, as his device had been sent back to the manufacturer for repair. Although the loaner machine was more advanced, it posed certain problems. It frequently broke down because the software it was running was a beta version and was not very stable. Also, the USB ports were temperamental and did not allow printing on any of the family's printers or the printer at school. The PCMCIA card that the loaner accepted was not compatible with Jon’s own device, which meant the books stored on his PCMCIA card that had been downloaded from Bookshare.org
and the National Library Service (http://www.loc.gov/nls/) were not accessible and had to be downloaded again.
Low-Tech to High-Tech
Jon also uses a manual Perkins Braille Writer. This device directly embosses the braille code that is typed by the user. He most often uses this device when the focus is on learning braille and its mechanics. When Ms. VanCampen started working with Jon about three years ago, he was using Grade 1 braille, which does not include braille contractions. Braille contractions provide a type of shorthand braille, where one braille symbol represents a group of letters or perhaps even a word. Now he uses contracted braille (Grade 2) and is familiar with the complete Literary Braille code. The Perkins Brailler is also used as a backup to the BrailleNote. When new vocabulary is introduced, Jon usually learns it in uncontracted braille to verify and reaffirm the spelling, and then in the contracted form. Advancing to the contracted form is essential as most braille books use this form and also because braille, even in the contracted form, occupies six to seven pages for every page of print material. Jon is now learning to use Interpoint, which is Braille embossed on both sides of a page. Ms. VanCampen foresees that Jon will soon start learning the Scientific and Nemeth Braille code as he progresses to higher levels in science and math, respectively.
Braille Production at School
A braille production system is used at school. The system consists of a PC, scanner, braille embosser and inkjet printer. The material that has to be converted into braille is given to Ms. Aldrich at least five days ahead of time. She first scans the material using a HP Scanjet 8200 scanner and then opens the file in MS Word so that she can edit and format it correctly. If it is not possible to scan, then she manually types the material into the computer. The material is then converted to braille using Duxbury braille translation software. The translated material is then “printed” as a Braille document using the braille embosser. The embosser is placed in an adjoining closet as it is rather noisy and disturbing to others in the classroom.
A print version of the braille document, along with the corresponding text, can also be printed on the Epson inkjet printer that is connected to the PC. This enables a person who is not conversant in Braille to follow Jon’s reading. Ms. VanCampen hopes that in the future, with the National Instructional Materials Accessibility Standards (NIMAS), all published material, including textbooks will be made available in accessible electronic format so that conversion to braille will be seamless.
Large Display Scientific Calculator
Although Braille is his preferred reading medium, Jon also uses print material, especially for math. He uses a Sci-Plus, which is a large display scientific calculator by Sight Enhancement Systems (www.sightenhancement.com). Jon also writes down information when he wishes to engage in conversation with non braille users. This proves sufficient when the conversation is short and simple, but can quickly become tedious. Jon also uses some low-tech devices such as darkline markers and white paper, hand-written and machine-generated large print, optical magnifiers, and binoculars. He also uses a graphite, folding mobility cane (Ambutech) to travel safely and confidently.
When Jon wants to use his vision to read he uses a video magnifier/CCTV (Clarity Systems - www.clarityaf.com) which allows for 4-60x magnification. The model that he uses has a swivel camera and allows for distance viewing as well as near magnification. Jon is quite familiar with adjusting and setting up this equipment. The near magnification feature of the CCTV is used for reading material such as pictures, maps and certain books that cannot be readily converted to braille. Jon uses the distance magnification feature to see his teachers and classmates and to see materials such as posters or decorations placed at a distance. He also takes the system into the school auditorium for assemblies and school performances. He can focus the camera either on the speakers or the sign language interpreter on stage to enable him to follow and enjoy the performance. He usually has an interpreter by his side who can sign to him when the camera is focused on the stage.
Assistive Technology at Home
At home the smoke/fire alarm and Jon’s pager system use a tactile alerting system. For telephone service Jon uses a large print TTY (telecommunications device for the deaf). His mother told me that when he was young Jon had used Tactaid (www.tactaid.com) for almost three years. A Tactaid can help a deaf person understand sounds by providing coded sound information through vibrators placed on the individual’s skin. However, the use of this device was discontinued because Jon found the constant vibration to be distracting and annoying, and he wasn't deriving benefit from it.
Although Jon’s is a success story in the effective use of technology for the educational advancement of an individual with deafblindness, the access to technology and service has not always been readily available. Jon’s parents usually approach the Commission for the Blind and Visually Impaired for funding when they recognize that Jon needs new equipment. The Commission has a special fund for students who are deafblind which can usually be accessed. If the Commission rejects the request, then they approach the school district. The Commission usually provides them with ample support when they submit a request to the school district. Jon's BrailleNote and his braille production system at home wer paid for by a grant written by Jon's home school district, but Jon’s parents take care of all extended warranty maintenance costs, as well as shipping and insurance expenses on his BrailleNote. The extended warranty has expired, and Jon’s parents bear the cost of repair. Jon’s father’s employer has been generous in providing two laptops.
Jon’s mother would like him to be fully included by the time he completes his five-year high school program. For that to happen, Jon's team has focused its approach on an intensive language arts curriculum, including reading comprehension, vocabulary development, writing skills, communication skills, and social skills, all of which were delayed due to a lack of exposure during Jon's early years and the impediments posed by his disabilities.
Jon is currently working toward independent access to the Internet for research, email, and enjoyment. Ms. VanCampen would like Jon to have access to text messaging as an alternative to the telephone. Text messaging is widely used in the deaf community, but it is not easily accessible to Jon due to his visual impairment. Email and text messaging will increase his communication with his peers and provide opportunities for him to work on his written communication skills. Once Jon learns the software-specific commands to navigate through the Windows operating system and the Internet, he will be able to access the Internet directly through his BrailleNote device or through a computer using the BrailleNote for its refreshable braille display. These skills will be incorporated into his school day and reinforced at home where possible. According to his mother, Jon has recently started using mail to correspond with his family and friends. She would like him to come to rely on it as a means of communication. Currently Jon does not have access to a device that has the appropriate features that would allow him to text message in “real time” with his peers. A device that would help Jon is an all-in-one wireless device, such as the Sidekick, adapted for tactual reading, but such equipment is not available at an affordable price. His mother is looking into the possibility of a variable font cell phone as a start.
Portable System Provides Easy Communication with Sighted Individuals
To enable him to communicate more efficiently and effectively with sighted people, Jon’s mother would like him to have access to a new product called FaceToFace (Freedom Scientific - www.freedomscientific.com). FaceToFace connects the PAC Mate, which is Freedom Scientific’s braille notetaker, to a regular Hewlett Packard iPAQ PDA (Personal Digital Assistant) with a wireless link. If Jon were to use FaceToFace, he would use a PAC Mate instead of his BrailleNote, and he would carry the tiny iPAQ with him. When he wanted to communicate with a sighted person, he would hand the iPAQ to the sighted person, type on his QWERTY keyboard, and the message would wirelessly be beamed to, and displayed on, the iPAQ. The sighted person would then type a message on the iPAQ using the regular stylus and onscreen keyboard or an attachable keyboard, and the message would be wirelessly beamed to the PAC Mate which would display it on the refreshable braille display for Jon to read in braille. This new product may be a good solution to Jon’s communication problems with the hearing and sighted world, and Jon's mother is hopeful that it may soon be part of Jon's technology repertoire.
Meenakshi Pasupathy is a graduate student in the Department of Special Education, Language and Literacy at The College of New Jersey. She is the parent of a child with severe disabilities.