Communicationand Culture: How They Relate to Service Development and Advocacy for PeopleWho Are Deaf-Blind.
A Report on a Presentation by Dr. Harlan Lane at the Hilton/PerkinsNational Conference On
Deafblindness.
Peggy Malloy.
The human brain has a remarkable ability to adapt to the absence orloss of sight and hearing. This adaptability and its implications for thedevelopment of language, education, and ways of interacting with the worldfor people who are deaf-blind was the theme of a speech given by Dr. HarlanLane at the Hilton/Perkins National Conference On Deafblindness held inWashington, D.C., last June. Dr. Lane, a psychologist and linguist,has written extensively about deaf culture and language.
This article summarizes some of the key points addressed by Dr. Lane,but focuses primarily on his principal theme about the importance of helpingchildren who are deaf-blind learn and develop by surrounding themwith people, language, educational programs, and environments that matchtheir unique sensory abilities. An understanding of how the sensory abilitiesof people who are deaf-blind differ from those of people who are hearing-sightedand the underlying neurological basis for this can help parents, deaf-blindadults, and others who work with deaf-blind children create environmentsthat will nurture each child, promote language development and learning,and support social and emotional needs. As part of this, Dr. Lanesuggests that deaf-blind children be educated in specialized rather thanmainstream environments. He also suggests the creation of opportunitiesfor deaf-blind children to form connections with deaf-blind adults. Howthe Brain Adapts
Dr. Lane began his address by stating that, just as evolution givesspecies the ability to adapt to changing environments over millennia, itgives us as individuals the ability to adapt to our own environments withinour lifetimes. The ability of the human brain to adjust to or compensatefor what he called "different sensory configurations" such as deafness,blindness, or deaf-blindness is one such adaptation. This adaptive abilityis greatest early in life, but can also occur in adulthood.
The way the brain compensates for the absence or loss of a sense isby enhancing the function of the remaining senses. This adaptation is called"cortical plasticity." Dr. Lane described two mechanisms by whichcortical plasticity can occur. The first mechanism is increased activityin areas of the brain devoted to a particular sense when that sense receivesincreased stimulation. Braille readers and string players, for example,show "evidence of increased cortical representation of the fingers."
The second way in which the brain adapts is by allocating areas of thebrain normally devoted to one sense to other remaining senses. This is called "functional reallocation." In people who are born deaf or becomedeaf later in life, the brain allows areas of the auditory cortex normallyused for hearing to be reallocated to visual processing, giving deaf peopleenhanced visual abilities. Likewise, in people who are born blindor become blind later in life, areas of the visual cortex that normallyprocess vision may be reallocated to tactile sensitivity.
Thanks to cortical plasticity, our brains adapt to make use of the senseswe have available to us. People who are deaf or blind or deaf-blind communicateand interact with the world through channels that are different from thoseof people who are hearing and sighted. Therefore, says Dr. Lane,input from the environment in the form of language, social interactions,and education
should suit their own abilities rather than those of hearing-sightedpeople. He calls this "modality appropriate-stimulation," a topiche discussed in some depth, particularly as it relates to deaf-blind childrenand their developmental and educational needs. The ideal environment for the deaf-blind child is one that uses language, child-rearing strategies,educational methods, and social interactions that match that child's uniquesensory abilities.
Examples of Modality-Appropriate Stimulation.
According to Dr. Lane, only people and communities who have a particularsensory configuration themselves are able to create or evolve the typesof modality appropriate-stimulation language, culture, and other environmentalresources that suit their particular sensory abilities best. Hearing-sightedpeople can't do this because they have not adapted to alternate sensory
configurations. For this reason it is the deaf-blind community,in his opinion, which is in the best position to develop the resourcesthat deaf-blind children need.
Dr. Lane gave examples from the deaf community which illustrate theimportance of modality-appropriate stimulation and can be used as a modelby the deaf-blind community. The first example of modality appropriatestimulation that evolved within the deaf community is the development ofAmerican Sign Language of the Deaf (ASL). According to Dr. Lane,"There's no clearer evidence of the need for modality-appropriate stimulationthan the sustained failure over four centuries in teaching those born deafto speak." Speech training generally fails, he said, with childrenwho were born deaf or who became deaf early in life because it is difficultto teach an auditory language to a visual person. "One may acquireoral language naturally, using hearing, or one may acquire a visual languagenaturally, using vision, but one cannot acquire oral language naturally,using vision."
ASL is a visual language that is acquired naturally by deaf childrenwho are exposed to it. It has qualities and characteristics that make itperfectly suited for visual communication. The hand shapes and movements,for example, are highly visible and succinct and make use of space andfacial expressions. ASL could never have been invented by hearingpeople, because they do not
have the same visual abilities as deaf people.
A second example of modality-appropriate stimulation is the entire visuallyoriented environment that deaf children of deaf parents are raised in. Deaf children raised by deaf parents are exposed not only to a languagethat matches their own sensory abilities, but to child-rearing techniquesand visual modifications in the home that make it possible for the childto reach developmental milestones of language, social interaction, andeducation on a normal schedule.
Creating Modality-Appropriate Environments and Education for ChildrenWho Are Deaf-Blind According to Dr. Lane, deaf-blind adults can offerthe same advantages to deaf-blind children that deaf adults offer to deafchildren. The deaf-blind community, he said, can provide "a modelfor living, a range of strategies, culture, validation, peer and socialrelationships, recreation, and roles to fill." The deaf-blind communitycan also provide access to employment opportunities, instruction in Brailleand other skills, advocacy, and links to support services and interpreters.
In order for the deaf-blind community to be a major resource in thedevelopment of deaf-blind children, two things must happen. First, continuedgrowth of deaf-blind culture must be encouraged. According to Dr.Lane, deaf culture and language have flourished because deaf people haveconnected with each other in communities and residential schools. Dr. Lanebelieves
that deaf-blind people need to form more of these types of connections.
Second, in order for the deaf-blind community to be a major resourcein the development of deaf-blind children, increased opportunities forcontact between the deaf-blind child and the deaf-blind community mustbe created. Dr. Lane gave several suggestions for how to bring thisabout. In areas with active deaf-blind communities, he said, communityleaders should
collaborate with educators and other people involved in the lives ofdeaf-blind children to establish programs that bring deaf-blind childrenand adults together. In areas where there is no deaf-blind communitythe child can benefit from contact with either the deaf community or theblind community. Children who communicate in English or another spokenlanguage will probably fit in best with the blind community. Children who communicate in sign language or have not yet learned a language aremore likely to benefit by contact with the deaf community.
Dr. Lane believes that educational programs in specialized settingsthat surround the deaf-blind child with other deaf-blind children and withdeaf-blind adults, rather than with hearing-sighted children, are morelikely to promote the deaf-blind child's development. Examples ofspecialized settings include residential schools, magnet schools, specialday programs, and camps. In these settings, deaf-blind children willinteract not only with other deaf-blind individuals, but also with speciallytrained professionals who, " if they are not deaf-blind themselves, neverthelesshave the knowledge and experience to present language, environment andsocial interactions" in ways that match the child's own sensory abilities. The opportunity to learn according to their own capabilities, apart fromthe mainstream, will make it possible for them to rejoin the mainstreamlater on.
"We must place the deaf-blind child apart from the mainstream amongpeople who know how to provide modality-appropriate stimulation in orderthat the child may rejoin the mainstream as a competent participant. Inthis way, we honor his or her deep rights as a human being. We must notconfuse the appearance of rights with the rights themselves. When we affirmwith the
universal declaration of human rights that all people are born equalin human dignity and rights, do we mean that deaf-blind children have theright to be treated in exactly the same way as sighted-hearing children,or do we mean they have the right to have their distinct identity valued?Does every child have a right to go to the local school or the right toan education? Does every child have a right to speech or a rightto language?"
The message of Dr. Lane's speech was that we should respect and embracethe sensory differences of deaf-blind children. An understandingof how the brain finds new pathways when particular senses are unavailablecan help people who are involved in the lives of deaf-blind children recognizeand respond to their unique needs.
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Although this article has focused primarily on issues relating to children,Dr. Lane also talked about how the brain adapts to sensory loss later inlife and the impact this has on adults. The keynote speaker at theconference, Dr. Oliver Sacks, a well-known neurologist and writer, spokeon related themes. The texts of both speeches will be available aspart of the general conference proceedings which have not yet been published.To be placed on a waiting list for information about the conference proceedings,call the Hilton/Perkins office at (617) 972-7228.