Volume 12 Issue 1
In This Issue
Deafblindness and intervention go hand in hand. Intervention may be called by different names and look different with each person who receives it, but the essential purpose is always the same, to provide individuals who are deafblind with the information they are unable to gather on their own. Deafblindness is an information-gathering disability, and intervention is essential for all people who are deafblind. Intervention equals information.
Sighted-hearing people gather information about the world largely through their senses of vision and hearing. Therefore, we may say that an intervenor acts as the eyes and ears of someone who is deafblind. It sounds simple, but in reality the process of intervention is very complex. An intervenor must constantly read the individual whom he or she supports to determine the information that is needed, the best way to convey it, and whether it has been clearly received. Intervention is a philosophy, not a nice neat program that can be easily taught and applied to every person who is deafblind. Proper training of intervenors is very difficult, and at the same time, absolutely essential.
This article describes the philosophy of and some of the
strategies used for intervenor training by the British Columbia Provincial
Outreach Program for Students with Deafblindness. The program is funded by the
Ministry of Education and is mandated to work with children in their home
schools in inclusive settings. In British Columbia there is a small population
base spread over large distances, and this has shaped the development of the
training program. First, the content of courses is focused on the needs of
children and young adults who have been born with combined vision and hearing
loss or who have acquired it early in life. Second, in most situations the
person supporting the deafblind individual has already been hired, and it is
then necessary for him or her to be trained as an intervenor.
Using Simulations to Promote Understanding of Deafblindness
It is essential that anyone who supports a person with deafblindness have a keen understanding of the impact that combined vision and hearing loss has on an individual’s ability to learn. There is nothing more powerful or moving than a simulation activity to make this point. No description or instruction about deafblindness can compare to personally experiencing an activity with limited visual and auditory input. It has been my experience that students learning to be intervenors remember the simulation experience above all else. A carefully planned simulation will spark a student’s interest and encourage a better understanding of the challenges that a deafblind person faces each moment of every day. Simulations make students think about what it means to experience the world without the access to accurate information provided by vision and hearing, and they drive home the point that deafblindness is an information-gathering disability.
Many people argue that simulations create a false impression because they are not real and there is no way that a sighted-hearing person will ever be able to experience what the world is like for someone who is deafblind. This is true. My intent in doing simulations is to make people think, not to recreate the experience of someone who lives each day with deafblindness. I start every simulation by telling students that the experience is not real. It does not accurately depict the way that the people they support experience the world. For one thing, each sighted-hearing person brings a wealth of background information to a simulation that someone who has never seen or heard does not have. Another important point is that we are so used to relying on our distance senses to gather information that it comes as a shock to suddenly have those senses taken away. Relying on other ways of gathering information is a natural way of being for deafblind people, but it can be very frightening for a sighted-hearing person involved in a simulation. Simulations are also misleading because we know that we can take the blindfolds off. This tends to make us more patient and willing to put up with what is happening.
Having said all of these things, I still believe that simulations are important in helping us to better understand how to improve our interactions with someone who is deafblind. The simulation is a starting point for further discussion. It is not an experience that can be rushed through and then left for students to make sense of on their own. Discussion following a simulation is as important as the simulation itself. It is during the follow-up discussion that the trainer has an opportunity to correct any misconceptions that may have occurred and to share information about deafblindness and the techniques of intervention in a way that students will remember.
Unique Role of the Intervenor
It is often difficult for people to understand the difference between the role of an intervenor and that of other supportive positions. When training intervenors, it is essential to clearly emphasize the unique role that an intervenor plays in the life of someone who is deafblind. Intervenors may be asked to take on many tasks that are similar to those of a caregiver, a teaching assistant, or an interpreter, but the key difference lies in how they perform these tasks and in how they provide information to a deafblind person.
To stress this point, one training activity I have found to be very beneficial is to choose a seemingly simple task such as changing a diaper and exploring how this task would be performed differently by a caregiver, a teaching assistant, an interpreter, and an intervenor. I have my students do the brainstorming. They usually begin by describing a situation in which the caregiver simply changes the diaper. Then they look at how the same activity would be performed by a teaching assistant. In this scenario, the teaching assistant may give the child a cue for “washroom” and provide a running commentary during the activity. “Okay Sue, we are changing your diaper. There, all done.” The teaching assistant has described the activity to the child, but in the end she has still done it for the child. An ASL interpreter would sign the words to the child while the caregiver or the teaching assistant changed the diaper but would not be involved in the activity itself.
Finally, we explore how this activity would be carried out by an intervenor who understands the child’s visual and auditory needs. The activity would start at the child’s calendar box, and the intervenor would cue the child with voice, sign, and an object cue that they were going to the washroom. Once there, they would explore the cool tiles just inside the door to let the child know where they were. The intervenor would find a way for the child to help turn the light on and give language to describe it, “Lights on. Where’s the cord? Find it. Pull the cord. You turned the lights on.” Together they would gather all the necessary equipment from clean diapers to wipes. The intervenor would find ways to ensure that the child was actively involved in the whole process, from start to finish, in a way that was appropriate for the child. Intervention is about information and about providing children with opportunities to think for themselves and to solve problems whenever possible. A good intervenor understands this and builds these opportunities into every activity.
One of the biggest differences between an intervenor and other support positions lies in the nature of deafblindness itself. An intervenor is the deafblind learner’s link to the world, to information about the environment. The more successful the intervenor is, the more information the learner will want and need. We know an intervenor has been successful when the need for intervention increases rather than decreases as the learner grows and wants more and more information about the world. For all other supportive positions, success is measured by how independent the person becomes and how much support can be removed. It is the exact opposite for someone who is deafblind.
Key Components of Intervention
Deafblind learners have a great deal of difficulty interacting with other people and with their environments because they lack opportunities for anticipation, motivation, communication, and confirmation. When planning for any activity, an intervenor should ask:
• How will I let the learner know what is about to happen,
both in the immediate and distant future? (Anticipation)
An intervenor should use a variety of techniques to communicate in a way the learner can understand. An intervenor is a learner’s link to the world, to information about the environment. The intervenor must help the learner to simultaneously expand his or her language and experience of the world by labeling new things in the environment. The intervenor should follow the child’s interests, share his or her world, be a communication partner, and remember that success is achieved when the learner wants and needs more information.
Memory Hooks and Practical Training
When training intervenors, it is useful to use memory hooks—catch phrases or mottos—to help them remember the goals and components of intervention. Present these hooks in a variety of fun and interesting ways until the students can repeat them in their sleep. These make learning fun and practical. Here are some useful memory hooks:
• The Role of Intervention: Intervention = Information.
• The Main Goal of Intervention: Always make sure that the
learner you support is an active and informed participant in everything you
• The Intervenor’s Motto: Do With, Not For.
• The Key Components of Intervention: Anticipation,
Motivation, Communication, and Confirmation.
Intervenor training should be practical and fun. Stories about deafblind children and their intervenors that illustrate a point or reinforce a theory are much easier to remember than long lists of things to do or theories to memorize. Whenever possible, I ask the students to relate the information they have learned during the training to the people with deafblindness whom they know and support. Video clips of other intervenors can be very powerful in demonstrating what intervention is about and how it is done successfully. Role-playing and hands-on activities help students practice new techniques and strategies.
This article has described the philosophy and some of the
strategies for intervenor training used by the British Columbia Provincial
Outreach Program for Students with Deafblindness. It has emphasized what is at
the heart of our training—the importance of helping intervenors to
understand and internalize the nature of deafblindness and the role of
intervention—but has only touched upon some of the content of the
training. For more information regarding the full content of our courses,
contact DB-LINK for an overview and outline:
Gee, K., Alwell, M., Graham, N., &
Goetz, L. (1994). Inclusive Instructional Design: Facilitating Informed and
Active Learning for Individuals Who Are Deaf-Blind in Inclusive Schools. San
Francisco: California Research Institute, San Francisco State University.
Sharon Barrey Grassick
Toys can be fun and are often great for educational purposes, but sometimes toys should be left in the cupboard. Many children who are deafblind or have multiple disabilities are not yet able, or perhaps have not been given an opportunity, to choose toys or activities for themselves. If a child were free to choose any toy at all, he or she would probably choose you, the “human toy.”
We often forget the two things that are most important to children, especially to children with sensory impairments—effective human contact and interaction. Is time best spent trying to teach a child to use a particular toy, or is it better spent interacting on a personal, conversational level with a child, using voice and body language, especially the hands, to share experiences and acknowledge the child’s behavior as communication?
There is often too much emphasis on teaching children, particularly those with severe physical disabilities, to use toys by directing and controlling their hands and not enough emphasis on personally interacting with children to achieve the same kinds of skill development. Rather than manipulating a child’s hands to teach him or her how to use a toy, offering ourselves as human toys and making our hands available for the child to control can achieve remarkable conversations (Miles & Riggio, 1999). What better way to learn cause and effect, for example, than by playing a turn-taking game, pausing the activity, and then waiting for the child to indicate that the game should continue? A child may notice, “If I move my leg when Daddy stops swinging me, Daddy starts swinging me again!” “If Mummy stops bouncing me and I move my arms up and down, Mummy starts bouncing me again!”
A great deal of money and time can be spent looking for effective cause and effect toys—toys with bright shiny colors, good contrast, interesting sounds, and stimulating textures. These toys are designed to be motivating, but motivating to whom? Too often, they are far more attractive to an adult than to a child. Consider the following activities as alternatives to commercial cause and effect toys:
If a child does something, the adult communication partner acknowledges and responds in a particular, meaningful way, keeping it fun and interactive. Depending upon the interests and abilities of an individual child, many variations to the above can be used.
During these activities, be sure to acknowledge when a child’s behavior, such as turning away or diverting the eyes, communicates a need for a break, time for processing, or self-regulation. These cues are often subtle, but it is important to learn to recognize them and understand the needs they express. These types of behaviors can be misinterpreted as noncompliance or disinterest in a person or activity. Just imagine the energy that is required by children who are deafblind, and who often have additional disabilities or complex medical conditions, to try to use what little vision or hearing they may have. The need for breaks must be recognized and respected.
The following example demonstrates the value of human interaction. A young deafblind child, “C,” would not accept her hearing aid. As soon as it was inserted, she would use her excellent fine motor skills to pull it out. Her parents had been using a special toy to motivate her to keep the hearing aid in, but it did not appear to interest C or offer her any auditory stimulation.
Because of the wonderful bond she had with her parents, a different approach was suggested—to use the parents themselves rather than a toy as the motivation for acceptance of the hearing aid. They used the following process:
The first time the parents tried this approach, it was maintained for over 10 minutes with lots of smiling from C and without her attempting to remove the hearing aid. When C finally turned her head away, this was acknowledged and interpreted as a need for a break or time to process the information. The hearing aid touch cue was given and the aid quickly turned off and removed before she had the opportunity to remove it herself. C is now wearing her hearing aid most of the day.
Using parents as motivating “human toys” empowers parents. What better way to motivate a child than to have a parent who responds to their child’s actions and behaviors in a positive and meaningful way? The important components are consistency, routine, predictability, understanding, and fun!
During activities, maintain conversations by using fingerplay and by singing songs with specific patterns. Always allow time for the child to initiate contact with you and to respond to your interactions. Significant people may have a special song or rhyme that they sing every time they greet a child, and this can become a type of “song signature.”
Allow the child to have access to your face, especially to your mouth. If a child’s hand or fingers make contact with your face, immediately respond by vocalizing, talking, or singing. “Chin to chin” is another technique that can be very effective. It involves talking or singing with your chin in contact with the child’s chin, allowing the child to feel the vibrations from your vocal chords and breath flow.
In summary, don’t throw away all the toys! There is definitely a time and place for some. However, stop and think before offering a toy. Maybe there is another way. We don’t always have the luxury of one-on-one time to spend with children. When we do, the most valuable activities are those that involve personal interaction, turn-taking, imitation, conversation, and the enjoyment of being connected with another human being.
Miles, B., & Riggio, M. (Eds.) (1999). Remarkable conversations: A guide to developing meaningful communication with children and young adults who are deafblind. Watertown, MA: Perkins School for the Blind.
A special thank you to Dr. Mike Steer of Renwick College, NSW,
Australia, for his help with editing.
Editor’s note: A previous version of this article was published in the ADBC Beacon: The Newletter of the Australian DeafBlind Council, No. 25, February 2004.
John Lee Clark
“Which would you rather be, deaf or blind?” Deaf-blind literature has a long tradition of answering this question, discussing the relative values of hearing versus sight, with sides decisively championed and rarely changed. That there is such a question is significant, reflecting the belief that being deaf and blind is inferior. Which would I rather be? Both. I want to be DeafBlind. I would not change what I am for the world. For me, the joys of DeafBlind experience far surpass the conflicts caused by inaccessibility, ignorance, and bigotry. But responding to that question with “I want to be DeafBlind” should not be so rare. Barriers should not prevent one from full self-identification, from wanting to be as DeafBlind as one can be. Yet my attitude is rare, and people who are deaf-blind are ambivalent about their identity.
Why is this so? There are many factors, but I believe the most important one is that DeafBlind cultural knowledge and power is too fragile and fragmentary. While there are many resources and services for the “rehabilitation” of the deaf-blind, very little of it is cultural in nature. Only a slender slice of the deaf-blind youth population has deaf-blind peers at school. Of all deaf-blind people, only a small percentage is active in the DeafBlind community, or in any community for that matter.
This lack of community involvement affects in varying ways how people tend to cope with deaf-blindness. The classic sequence of a person adjusting to deaf-blindness begins with the discovery or experience of the fact that the person is, or will become, deaf and blind. Then, when enough denial or grief is experienced and then held at bay, the person will likely learn the necessary basic skills of being a functional deaf-blind person. But often the person will still be emotionally at odds with being deaf-blind, thus remaining shy of being fully and happily DeafBlind.
In such a pattern, denial is extremely prolonged, mainly because it is not a single adjustment but a succession of adjustments. This is especially true for people with progressive conditions in which the levels of hearing and sight change across long periods of time. It does not help when deaf-blind individuals are expected, by hearing and sighted society and sometimes even by each other, to cling to whatever is left of their hearing and sight. Such a stretched-out process breeds false self-representation and social withdrawal.
These conditions bewilder and isolate deaf-blind persons, and they
make it harder for the DeafBlind community as a whole to have outgoing
relationships with other communities. This difficulty means that the community
mostly has passive relations where members of other communities come in, often
as “professionals in the field.” Because of this imbalance,
DeafBlind people are more alien outside of their community than they should
I am living proof of such a solution. Although most of it was accidental for me, the components should be in place for every deaf-blind child, so they can experience the same ease and joy I had in becoming DeafBlind. I enjoyed unlimited access to DeafBlind role models and peers, I learned Braille and orientation and mobility early, and I was never allowed to use my deaf-blindness as an excuse. As a result, I started to listen to ASL tactually not because I had no visual alternatives but because I did not want to miss or misunderstand any information. I began to use my cane not because I could no longer watch the ground before me but because it provided safety, relief, and freedom. I started to read in Braille not because I no longer could read with my eyes but because reading Braille has its own literary rewards. I did not become a great pretender; instead, I became myself.
So I know from personal experience that when more authentic DeafBlind knowledge and power is established, the positive pattern of adjustment will be possible. A healthy DeafBlind culture will first invite a deaf-blind person to emotionally identify herself as DeafBlind, to go through the emotional adjustment but once. The emotionally, and now culturally, DeafBlind person will then value, not resist, DeafBlind skills training and other learning experiences. And when the eyes and ears fail, or already have failed, it will be no loss at all, for the person will be fully and happily DeafBlind.
To a Much Younger Myself
How can I blame you for being
A seer of phantoms, you thought
But cannot you see how
The longhand that signs
However well your dark irises
Believe first and then see
John Lee Clark, a DeafBlind Minnesotan, is the publisher of The Tactile Mind Press. He is an award-winning rhetor and poet and lives in St. Paul with his wife and their three sons. He can be reached by e-mail at firstname.lastname@example.org.
“Research Update” is a regularly recurring feature consisting of announcements related to research in deaf-blindness. Researchers and other interested individuals or agencies may use this column to share information about new, ongoing, or recently completed research projects and new publications. If you have information about a research topic that you would like to include, contact:
Assessment Project Update
Submitted by Dr. Charity
Validation of Evidence-based Assessment Strategies to Promote Achievement in Children WhoAre Deafblind
Background. Children who are deaf-blind are often labeled “difficult to test,” implying that the fault lies with the children as opposed to the assessment instruments. Assessments developed for children without disabilities or for children with vision impairment, hearing impairment, or developmental disabilities may have some applicability for children who are deaf-blind, but they are unlikely to be completely appropriate without adaptations. Some assessments developed specifically for children who are deaf-blind are not supported by extensive reliability or validity studies. If we question the quality of the assessments conducted on children who are deaf-blind, then we must also question the quality of the educational decisions and the instructional programs that are based upon those assessment efforts. This five-year project was funded to address the problems related to assessment of 2–8 year old children who are deaf-blind.
Goals. The goals of the project are to:
1. identify instruments used to assess children ages 2–8 who
are deaf-blind and the purposes for which they are used;
The assessment instruments to be validated will be ones that address communication/social development and cognitive development. Project results are expected to promote high-quality assessment of children who are deaf-blind, which will generate appropriate educational goals related to communication, social, and cognitive development.
Current status. Surveys about assessment practices for parents and professionals were developed and distributed across the country over the summer with the help of many state deaf-blind projects. The data will be analyzed in the fall, and decisions will be made regarding which assessment instruments will be validated in the remaining years of the project.
Project co-investigators: Oregon Health and Science University (Dr. Charity Rowland, Philip Schweigert), University of Texas at Dallas (Dr. Robert Stillman), California State University-Northridge (Dr. Deborah Chen), St. Lukes-Roosevelt Hospital/Columbia University (Dr. Harvey Mar), and National Family Association for Deaf-Blind.
New Research Articles
Hartshorne, T. S., & Cypher, A. D. (2004). Challenging Behavior in CHARGE Syndrome. Mental Health Aspects of Developmental Disabilities 7(2), 41–52.
The primary purpose of this study was to identify typical behaviors in children with CHARGE Syndrome. One hundred parents completed a Web-based survey that listed 71 behaviors based on diagnostic categories that have been frequently reported anecdotally.
Giangreco, M. F., Edelman, S. W., & Broer, S. M. (2003). Schoolwide Planning to Improve Paraeducator Supports. Exceptional Children 70(1), 63–79.
This study evaluated the
use of a process of planning for paraeducator supports. Findings indicated that
the process outlined in a 27-page booklet, A Guide to Schoolwide Planning for
Paraeducator Supports, assisted school teams in assessing their paraeducator
practices, in identifying priorities, and in developing and implementing action
plans. The guide is available at
For Your Library
We Have Contact! (Video or DVD)
Educating Children with Multiple Disabilities: A Collaborative Approach (4th Edition)
Fred P. Orelove, Dick Sobsey, &
Rosanne Silberman (Eds.). Baltimore, Paul H. Brookes, 2004
Perkins Panda Early Literacy
The following is a list of some upcoming conferences and other training opportunities. For a more extensive list, go to the DB-LINK Web site (http://www.dblink.org) or call DB-LINK. Phone: 800-438-9376. TTY: 800-854-7013.
2004-05 Colorado State Conference on Visual
Impairment—Presymbolic Communication and Tangible Symbol Systems:
Communication Strategies for Children with Sensory Loss and Significant Support
Assessment and Interventions: Case Studies in
Texas Symposium on Deafblindness
Helen Keller National Center National
Training Team 2005 Seminar Calendar
Contact: Doris Plansker. Phone: 516-944-8900, Ext. 233. TTY: 516-944-8637. E-mail: email@example.com. Web: http://www.hknc.org.
Prematurity, ROP, and Cortical Visual Impairment
Collaboration Achieves Travel Success (Project CATS)
Use of the Project CATS process will aid teams in the development and implementation of individualized, detailed student travel plans that maximize the use of residual vision and hearing during travel. The ultimate outcome for students will be increased access, opportunities, and participation in their homes, schools, and communities. An article about Project CATS will appear in the Winter 2005 issue of Deaf-Blind Perspectives. To learn more about Project CATS in the meantime, contact:
Karen Goehl, Project Director, Indiana Deafblind Services
Lisa Poff, Project Coordinator, Indiana Deafblind Services
Joan Houghton, Evaluation Consultant, University of Kansas
40th Anniversary of Rubella Epidemic: National Survey
American Association of the Deaf-Blind (AADB) 2006
Community of Practice Focused on Interveners and
Paraprofessionals Working with Children and Youth who are Deaf-Blind
To join the listserv, go to the
following Web site:
345 N. Monmouth Ave.
Monmouth, OR 97361