ERIC EJ1149627: Should Individuals Who Do Not Fit the Definition of "Visual Impairment" Be Excluded from Visual Impairment Services?

2017·0.1 MB·English

by  ERIC

30, 2007. Retrieved from https://legcounsel. sparkedbytheincreasingnumbersofchildren
house.gov/Comps/Individuals%20With% who had been diagnosed with the condition
20Disabilities%20Education%20Act.pdf and the prolific efforts of many medical and
Lawson, H., Lueck, A. H., Moon, M., & To-
nonmedicalindividualsandinstitutions.During
por, I. (2017). The role and training of
that time, wide variations were discovered
teachersofstudentswithvisualimpairment
among individuals with CVI. Most had diffi-
(TSVIs)asaspecialeducatorandwhyTSVIs
cultywithortheinabilitytovisuallyrecognize
do not provide vision therapy services: A
objects in general or certain categories of ob-
Low Vision Rehabilitation Division posi-
jectssuchasanimalsorautomobiles,tomanage
tion paper. Alexandria, VA: Association
for Education and Rehabilitation of the heavy sensory-motor demands, or to use two-
Blind and Visually Impaired. dimensionalvisualrepresentations(Morse,1999).
O&M Division. (2013). Position paper: Ori- Today, more information and training re-
entation and mobility specialists and the garding this brain-based visual disability is
provision of travel instruction to individuals available through university courses, in-
with nonvisual disabilities. Alexandria, VA:
service training sessions, and publications.
AssociationforEducationandRehabilitation
And more teachers of visually impaired stu-
of the Blind and Visually Impaired.
dents are providing services to those with
Office of Special Education Programs. (2017).
CVI. Indeed, many professionals in the field
OSEP 17-05: Eligibility determinations for
of visual impairment concentrate on provid-
childrensuspectedofhavingavisualimpair-
ing services to this population and primarily
mentincludingblindnessundertheindividu-
alswithdisabilitieseducationact.Washing- perceive CVI as a condition associated with
ton, D.C.: U.S. Department of Education. observable behaviors characteristic of severe
neurological insult.
There are, however, many infants, school-
Rona L. Pogrund, Ph.D., Associate Editor for
age children, and adults with CVI who have
Practice,JVIB,andProfessor,SpecialEducation
Program, College of Education, Texas Tech Uni- not received as much consideration, a popu-
versity,1100West45thStreet,Austin,TX78756; lationthatmostprofessionalsareill-prepared
e-mail: [email protected].
to understand and serve. These unrecognized
groups involve people who have typical or
ShouldIndividualsWhoDoNot
near-typical visual acuity but may not have
FittheDefinitionofVisual
been identified as having CVI or, indeed, as
ImpairmentBeExcluded
having a visual disability at all; persons who
fromVisualImpairmentServices?
have been identified as having CVI but who
MaryT.Morse alsohavearangeof“hiddendisabilities”that
C maygoundiagnosed;orindividualswhohave
erebral or cortical visual impairment
some form of CVI-related agnosia as, for ex-
(hereinreferredtoasCVI)isnottheunknown
ample, facial agnosia, prosopagnosia, topo-
condition it was 50 years ago. Although re-
graphical agnosia, or simultanagnosia (Dut-
search had been conducted and papers pub-
ton, 2015). These agnosias typically do not
lished,itwasnotuntilthe1980sthatitreally
fall within the defined definition of visual
became an issue of concern and much debate
impairments. Perhaps a question might be
for educators. This interest was primarily
asked: Depending on the effect on functional
lifeskills,shouldpersonswiththeseconditions
I give many thanks to all the children who
gave me new roads to explore and to the automatically be excluded from the expertise
various team members from whom I have that professionals in the field of visual impair-
learned so much. ment may be able to offer even though these
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©2017AFB,AllRightsReserved JournalofVisualImpairment&Blindness,July-August2017
individuals do not fit the current definition of world surrounded by strangers (Dalrymple
visual impairment (Morse, 2000, 2006)? This et al., 2014; Dutton, 2003).
short report will discuss two of these hidden There has been a lot of research regarding
disabilities that may be associated with CVI: prosopagnosia as related to adults, from
prosopagnosia and topographical agnosia. electro-physiological recordings of brain ac-
tivities to behavioral studies of performance
PROSOPAGNOSIA (K. Dalrymple, personal communications,
2011–2015). My own research and profes-
Prosopagnosiaor“faceblindness”isnotallthat
sionalexperienceswithpreschoolandschool-
rare—some estimates indicate that 1 out of 50
age children suggest that prosopagnosia may
people in the United States have some form of
have a significant effect on learning, social
it—yet it is possible that many people reading
interaction, communication, mobility, and
thisshortarticlehavenotheardofthiscondition.
personal safety. In addition, those with pros-
InLewisCarroll’sclassic1872novel,Through
opagnosia may have coexisting conditions
the Looking-Glass, and What Alice Found
or may be misdiagnosed altogether—if they
There,apassageseemstosuggestthatthechar-
were assessed and diagnosed at all (Mindick,
acter Humpty Dumpty has prosopagnosia:
2011; Morse, 2006). In my own experience,
very few of these students have received ser-
“Good-bye, till we meet again!” she
vices from certified vision teachers, rehabili-
said as cheerfully as she could. “I
tation practitioners, or orientation and mobil-
shouldn’t know you again if we did
ity (O&M) specialists.
meet,” Humpty Dumpty replied in a Perhaps no one can explain prosopagnosia
discontented tone, giving her one of better than Oliver Sacks, a neurologist, au-
his fingers to shake; “you’re so ex- thor, and professor, who died in 2015 at age
actly like other people.” “The face is 82 years. Dr. Sacks had a hereditary form of
what one goes by, generally,” Alice prosopagnosia, as did one of his brothers.
Five years before he died, he wrote about
remarkedinathoughtfultone.“That’s
what he called his “lifelong battle” with this
justwhatIcomplainof,”saidHumpty
condition. “I have been accused of what is
Dumpty. “Your face is the same as
variouslycalledmy‘shyness,’my‘reclusive-
everybody has—the two eyes, so—”
ness,’ my ‘social ineptitude,’ my ‘eccentric-
(markingtheirplacesintheairwithhis
ity,’ even my ‘Asperger’s syndrome,’ as a
thumb) “nose in the middle, mouth
consequenceandmisinterpretationofmydif-
under. It’s always the same. Now if
ficulty recognizing faces. . . . My problem
youhadthetwoeyesonthesameside withrecognizingfacesextendsnotonlytomy
of the nose, for instance—or the nearest and dearest but also to myself”
mouthatthetop—thatwouldbesome (Sacks, 2010, p. 3). Dr. Sacks could not vi-
help.” (Carroll, 1872, p. 135) sually recognize his own reflection until he
touched his own face (Sacks, 2010).
As Humpty Dumpty describes in this ex-
cerpt, people with prosopagnosia do not see TOPOGRAPHICALAGNOSIA
facesinadistortedmanner.Rather,mosthave Dr. Sacks also had severe topographical ag-
difficulty seeing the differences between nosia, the inability to orient to both familiar
faces (Dutton, 2015). Others do not see faces and unfamiliar surroundings. He had a life-
unless people are moving or talking. In es- long fear of becoming lost and, thus, his de-
sence, people with prosopagnosia live in a sires to travel were thwarted. He could read
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JournalofVisualImpairment&Blindness,July-August2017 ©2017AFB,AllRightsReserved
maps but became lost in familiar environ- erative diseases that the individuals experi-
ments, unable to recognize his home consis- enced as adults (Farah, 2004; Zihl & Dutton,
tently when standing in front of it unless he 2015). Typically, people with acquired pros-
could identify a specific visual characteristic. opagnosia are in contact with physicians
Topographical agnosia, like prosopagnosia, becauseofthecauseofthecondition,thus,in
is brain-based and is not a result of visual these cases, facial-recognition disabilities
acuity or fields of vision, although such have a better chance of being identified
ocular challenges may coexist (Goodale & (Cole, 1999; Dalrymple et al., 2014). By
Milner, 2004). comparison, congenital developmental pros-
Ihaveobservedstudentswhoidentifypeo- opagnosia may go unrecognized because
ple by the shoes they are wearing. One stu- most individuals do not see a neurologist
dent did not recognize a person as more than (Dutton, 2015) about “their problem . . . it is
an object unless he or she moved or talked, just the way they are” (Dalrymple et al.,
and others were invisible to him unless they 2014). Moreover, other members of the fam-
had a very unique characteristic. There are ily may have the same condition to a greater
students who rarely call anyone by name or lesser extent. Many of these same people
and others who consistently confuse women notonlycannotidentifyfacesbasedsolelyon
with the same color hair of a similar length. vision but also may have no sense of famil-
One student had an idea that all her family iarity.Iftopographicalagnosiaalsoispresent,
members should wear identical bathing suits then every face and place appears new and
to the beach so she would not get lost. continues to be so even when seen again and
Anotherrushedtothecafeteriaeachdaytosit again (Sacks, 2010). Current research on
at the same table and waited to see who sat childhood developmental prosopagnosia cur-
with him since he could not find his friends. rentlydoesnotincludethosewithadiagnosis
This same student was able to find that spe- of,orbeingatriskfor,CVI(K.A.Dalrymple,
cific table only by taking a specific route. personal communication).
Althoughhehadvisualacuitywithinthetyp-
ical range, he needed help in finding various CONCLUSION
locations even after many months in school.
Both acquired and developmental prosopag-
He, like many of the others I have seen, was
nosia, as well as topographical agnosia, may
disorganized with school and personal items
have a devastating effect on the lives of the
and tended to rely heavily on others for as-
children and adults who experience the diffi-
sistancealthoughhewasanacademicstudent.
culties associated with these conditions. Yet
Most of the students I have seen had great
few of these individuals have been identified
difficulty with or an inability to interpret fa-
orservedbythosetrainedtoworkwithpeople
cial expressions when talking to others but
who have visual conditions that affect func-
were able to do so when provided with pho-
tional life skills. I have witnessed the effect
tographs of the same people. Not all, but
theseconditionshavehadonmorethanthree
most, avoided eye contact and had prag-
dozen preschool and school-age children. I
matic difficulties, significant reading chal-
have learned that all these children need
lenges,route-findingproblems,andanxiety.
trained and experienced teachers of visually
impaired students and O&M specialists as
DIAGNOSIS part of their assessment teams. However, to
Most of the documented cases of acquired providetrulycomprehensiveandaccurateas-
prosopagnosia have been caused by brain sessments, the teams must work in a multi-
damagefromheadtrauma,stroke,anddegen- disciplinary fashion. To do otherwise would
379
©2017AFB,AllRightsReserved JournalofVisualImpairment&Blindness,July-August2017
oversimplifycomplex,multifunctionalneuro- • use larger print for names and larger
logical conditions (Morse, 1999). photographs on student and staff iden-
tification badges
SOMEIMPLICATIONSFORPRACTITIONERS • take attendance orally
Many of the following recommendations • organize storage areas that contain
may be used as part of a team assessment classroom materials to minimize visual
forbaselinedocumentation.Additionaltest-
distractions as much as possible, and
ing, beyond a functional visual assessment,
use color to reduce distractions.
might include O&M evaluation; auditory-
processing problem screening; speech and
Adaptationsforteaching
language assessment, as related to pragmat-
When working with students with prosopag-
ics; and occupational therapy for possible
nosia and topographical agnosia, the follow-
dyspraxia—challengesthatarefrequentlyas-
ing suggested adaptations may improve how
sociated with prosopagnosia and topographi-
students comprehend and follow directions.
cal agnosia. Other assessments may also be
necessary, which reinforces the need for a
• give directions that include clues: for
cohesiveteamapproachforplanningandpro-
example, “[Student], go join your
viding appropriate services to these students
who have perplexing functional neurological group” provides no clue, but “[Stu-
profiles.Itistheclusterofchallengesthatare dent], go join your group near the far-
of concern, not a singular one. right window” provides three clues
Implementing the following suggestions • provide optional structured activities
will vary depending on each student’s spe- tailored for specific locations (for in-
cific needs, the needs of the other students,
stance, gymnasium, cafeteria, or play-
grade level, subject (for example, science
ground),sincemovementactivitieswill
lab versus lecture hall), and other criteria.
makebothidentificationandorientation
All these suggestions have demonstrated
more difficult
usefulnesswithvaryingstudents,especially
• teach social manners and social expec-
when there is coordinated planning and
tations, since it is common for people
implementation across disciplines, environ-
ments, and activities (Cole, 1999; Mindick, withprosopagnosiatolacktheabilityto
2011; Morse, 2000). interpret facial expressions.
Adaptationsforthelearning Strategiestohelpstudentsidentify
environment people
The following suggested adaptations for the Theactsofmatchingphotographsoffacesor
learning environment may allow students emotions fall into the category of visual dis-
with prosopagnosia and topographical agno- crimination and matching skills; they are not
sia to perform better in the classroom: necessarily identification skills. Thus, these
students need to learn to:
• create smaller classes or groups of
students • visually scan people in a systematic
• organize classrooms via assigned seats manner(itisoftenhelpfulifthestudent
and include name signs on desks or can associate the person to a place,
chairs time, and event);
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JournalofVisualImpairment&Blindness,July-August2017 ©2017AFB,AllRightsReserved
• describe varying skin tones, facial marks Dutton, G. N. (2015). Disorders of the brain
(acne, wrinkles, moles, scars, or facial and how they can affect vision. In A. H.
Lueck & G. N. Dutton (Eds.), Vision and
piercings), the presence of facial hair
the brain: Understanding cerebral visual
(beards,mustaches,oreyebrows),aspects
impairment in children (pp. 47–53). New
of hair (color, style, length, texture, gen-
York, NY: AFB Press.
eral neatness or messiness, hairline), Farah, M. (2004). Visual agnosia. Cambridge,
body shape and height (pear-shaped, MA: Massachusetts Institute of Technology.
lanky, tall, petite, slim, or heavy set); Goodale, M., & Milner, A. (2004). Sight un-
seen. New York: Oxford University Press.
• observe clothing type, color, and style;
Mindick, N. (2011). Understanding facial
• recognize mannerisms (rubbing the
recognition difficulties in children. Lon-
face, pulling the beard, waving arms or
don, United Kingdom: Jessica Kingsley.
hands when talking, or tapping fin- Morse, M. (1999). Cortical visual impair-
gers) and behaviors (head tilt, favorite ment:Somewordsofcaution.RE:view,31,
topic of conversation, and stride when 21–26.
Morse,M.(2000).Corticalvisualimpairment
walking);
(CVI). Retrieved from http://www.tsbvi.
• identify props that are frequently used
edu/43-mivi-general/1708-autistic-
orwornbyothers(sunglasses,crutches,
spectrum-disorders-and-cortical-visual-
wheelchairs, unique jewelry items)—it impairment—two worlds-on-parallel-
should be noted that this identification courses
strategy could be a problem if the prop Morse, M. (2006). Another view of cortical
visual impairment: Issues related to facial
is missing;
recognition.InE.Dennison&A.H.Lueck
• noticeaspectsofthevoice(pitch,rhythm,
(Eds.), Proceedings of the summit on cere-
tone, accent, volume, lisp, or the ten-
bral/cortical visual impairment: Educa-
dency to talk hesitantly or fast); and tional, family, and medical perspectives,
• becomeassensitiveaspossibletofacial April 30, 2005 (pp. 131–135, 311–315).
expressions, if the student is capable of New York, NY: AFB Press.
Morse, M., & Morse, J. (2015). Supports for
interpreting facial expressions.
children and families. In A. H. Lueck &
G. N. Dutton (Eds.), Vision and the brain:
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