[acb-hsp] Fw: Another article of interest

[J.Rayl]

Let me preface this one by saying I do not agree fully with this author--and any extreme view either way is of concern to me; nevertheless, here is what some "experts" get their ideation from.--Jessie

Author: Hehir, Thomas
Publication info: Harvard Educational Review 72. 1 (Spring 2002): 1-32.
ProQuest document link
Abstract:
Hehir defines ableism as "the devaluation of disability" that "results in societal
attitudes that uncritically assert that it is better for a child to walk than roll,
speak than sign, read print than read Braille, spell independently than use a spell-check,
and hang out with nondisabled kids as opposed to other disabled kids."
Links:
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Full Text:
Headnote
In this article, Thomas Hehir defines ableism as "the devaluation of disability"
that "results in societal attitudes that uncritically assert that it is better for
a child to walk than roll, speak than sign, read print than read Braille, spell independently
than use a spell-check, and hang out with nondisabled kids as opposed to other disabled
kids." Hehir highlights ableist practices through a discussion of the history of
and research pertaining to the education of deaf students, students who are blind
or visually impaired, and students with learning disabilities, particularly dyslexia.
He asserts that "the pervasiveness of . . ableist assumptions in the education of
children with disabilities not only reinforces prevailing prejudices against disability
but may very well contribute to low levels of educational attainment and employment."
In conclusion, Hehir offers six detailed proposals for beginning to address and overturn
ableist practices. Throughout this article, Hehir draws on his personal experiences
as former director of the U.S. Department of Education's Office of Special Education
Programs, Associate Superintendent for the Chicago Public Schools, and Director of
Special Education in the Boston Public Schools.
Ableist Assumptions
When Joe Ford was born in 1983, it was clear to the doctors and to Joe's mom Penny
that he would likely have disabilities. What wasn't clear to Penny at the time was
that she was entering a new world, that of a parent of a child with disabilities,
a world in which she would have to fight constantly for her child to have the most
basic of rights, a world in which deeply held negative cultural assumptions concerning
disability would influence every aspect of her son's life. She and Joe had entered
the world of ableist assumptions.
Penny remembers an event that made it clear that she had entered a new world of lowered
expectations. She recalls her first visit with a social worker from a preschool program
for kids with disabilities. This person, though empathetic and supportive, made it
clear to Penny that she could not have the same dreams and aspirations for Joe that
she had for her seven nondisabled children. As Penny explains, "She was aghast that
I expected that Joe would one day be employed" (Ford, 1993, p. 2). Another event
added further clarification. At a workshop for parents of disabled kids, Penny was
told that she had to go through a period of mourning the arrival of her disabled
child. Deeply insulted, Penny's response was, "I have lost a child at birth and I
have had a disabled child. I know the difference. My son is a gift not a tragedy"
(p. 1). Penny was quickly developing the view, held by most disability advocates,
that while disability is not a tragedy, society's response to disability can have
tragic consequences for those who have disabilities.
Penny had yet to benefit from the narratives of disability activists such as former
U.S. Assistant Secretary of Education Judy Heumann. Throughout her eight-year tenure
during the Clinton administration, Heumann emphasized that "disability only becomes
a tragedy for me when society fails to provide the things we need to lead our lives
-job opportunities or barrier free buildings" (Shapiro, 1994, p. 20). But Penny was
beginning to write her own narrative, joining legions of other like-minded activists
seeking to fundamentally change the world of ableist assumptions (Ford, 1993).
Penny's early instinctual reaction to the negative assumptions held by many of the
service providers she encountered led her to seek the advice of adults with disabilities.
She recalls becoming friendly with an employee of the U.S. Department of Education's
Office of Civil Rights (OCR), a woman who had been disabled since childhood due to
a form of muscular dystrophy. As a child, when it became apparent she was disabled,
she was removed from the school she was attending and moved to a separate and, in
her view, inferior school. She warned Penny against going along with prevailing practices
based on low expectations. Penny recalls her counsel: "Don't assume he has the same
educational rights as every other child. You're going to have to fight for that"
(Ford, 1993, p. 3). This woman helped Penny understand that federal law, Section
504 of the Rehabilitation Act of 1971, prohibited discrimination against her son,
and that this law, along with the Individuals with Disabilities Education Act (IDEA),
supported Penny's desire for a quality education for Joe.1 However, even though these
laws were strong, existing practices were often difficult to change, due to deeply
held negative cultural assumptions about disability. By the time Joe was four, Penny
had filed a complaint against the Chicago Public Schools with OCR seeking Joe's placement
in a regular school and not in the special school into which the school system wanted
to place him. She had begun the journey to secure an appropriate education for her
son.
In this article, I examine how ableist assumptions influence the education of children
with disabilities and how these assumptions undermine the educational attainment
of these children. I ground this discussion within the context of standards-based
reform and the contemporary disability rights movement. This piece is based on the
relevant research, the narratives of individuals with disabilities and their parents,
and my thirty years of experience in the field of education.
Ableism and Schooling
The various definitions of ableism in the literature share common origins that are
rooted in the discrimination and oppression that many disabled people experience
in society (Overboe, 1999; Weeber, 1999). Laura Rauscher and Mary McClintock (1996)
define ableism as "a pervasive system of discrimination and exclusion that oppresses
people who have mental, emotional and physical disabilities. . . . Deeply rooted
beliefs about health, productivity, beauty, and the value of human life, perpetuated
by the public and private media, combine to create an environment that is often hostile
to those whose physical, mental, cognitive, and sensory abilities ... fall out of
the scope of what is currently defined as socially acceptable" (p. 198). Black disability
activist and talk-show host Greg Smith captures the essence of definitions of ableism
in his article "The Brother in the Wheelchair." "I've faced unintentional discrimination,
and it's just as damaging as racism. . . . It's called ableism, the devaluation and
disregard of people with disabilities" (Smith, 2001, p. 162).
Applied to schooling and child development, ableist preferences become particularly
apparent. From an ableist perspective, the devaluation of disability results in societal
attitudes that uncritically assert that it is better for a child to walk than roll,
speak than sign, read print than read Braille, spell independently than use a spell-check,
and hang out with nondisabled kids as opposed to other disabled kids, etc. In short,
in the eyes of many educators and society, it is preferable for disabled students
to do things in the same manner as nondisabled kids.
Certainly, given a world that has not been designed with the disabled in mind, being
able to perform in a manner that is similar to that of nondisabled children gives
disabled children distinct advantages. If efficient ambulation is possible, a child
who has received the help he needs to walk is at an advantage in a barrier-filled
world. Similarly, a child with a mild hearing loss who has been given the amplification
and speech therapy she needs may have little difficulty functioning in a regular
classroom. However, ableist assumptions become dysfunctional when the educational
and developmental services provided to disabled children focus inordinately on the
characteristics of their disability to the exclusion of all else, when changing disability
becomes the overriding focus of service providers and, at times, parents. Narratives
of disabled people and their parents are replete with examples of how changing disability
became the focus of their young lives and how such a focus denied them the opportunities
taken for granted by nondisabled people. These narratives speak to the deep cultural
prejudices against disability that they had to endure from an early age - that disability
was negative and tragic and that "overcoming" disability was the only valued result
(Ferguson & Asch, 1989; Rousso, 1984).
In No Pity, his history of the disability civil rights movement, Joseph Shapiro (1994)
chronicles the dominant cultural responses to disability. One model is exemplified
by the poster children of the muscular dystrophy telethon, which he refers to as
"Tiny Tims" - "the idea that disabled people are childlike, dependent, and in need
of charity and pity" (p. 14). Cyndi Jones, a disability activist and former poster
child, argues that "the poster child says it's not okay to be disabled . . . but
it says if you just donate money the disabled child will go away" (p. 14). Marilynn
Phillips, a professor at Morgan State University who has studied images of poster
children, recalls that the image of the valiant "crippled" child on crutches learning
to walk emerged in the mid-1950s. She argues that children like herself who had polio
before a vaccine was developed were an affront to the postwar faith in medical technology.
Disabled children were now "damaged goods" who had to try harder to deserve charity
and respect (p. 15).
According to Shapiro (1994), the belief that disability could be overcome led to
the rise of the other dominant image of disability: the inspirational disabled person,
or the "supercrip." Shapiro argues that this image is deeply moving to many nondisabled
people and the press, but is widely regarded as oppressive to most disabled people.
The extensive press coverage of a blind man who recently climbed Mt. Everest is a
good example of the supercrip image. Cyndi Jones argues that, like the image of the
poster child, this image implies that a disabled person is presumed deserving of
pity - instead of respect - until the person proves capable of overcoming disability
through extraordinary feats (Shapiro, 1994). Both of these dominant stereotypes of
disability, "Tiny Tims" and "supercrips," have at their core ableist perspectives,
the failure to accept and value disabled people as they are.
I contend that negative cultural assumptions about disability continue to have a
negative influence on the education of children with disabilities. The pervasiveness
of ableist assumptions in the education of these children not only reinforces prevailing
prejudices against disability but may very well contribute to low levels of educational
attainment and employment. School time spent devoted to activities associated with
changing disability may take away from the time needed to learn academic material.
In addition, the ingrained prejudice against performing activities in ways that might
be more efficient for disabled people but that are different from how nondisabled
perform them, such as reading Braille or using sign language, may add to educational
deficits. There is considerable emerging evidence that unquestioned ableist assumptions
are handicapping disabled children and are a cause of educational inequities.
I will illustrate how ableist assumptions are having a profound and negative impact
on the education of children with disabilities using issues around the education
of three groups, the deaf, the blind, and students with the learning disability dyslexia.
I will weave in Joe and Penny's experiences, as well as my own.
The Education of the Deaf
The education of deaf children provides a compelling example of ableism in action.
Unlike some disability populations, such as students with significant levels of cognitive
disability, educational programs for deaf children have existed in the United States
for over 150 years. Therefore, there is significant history and research to draw
on that should guide our efforts to improve education for the deaf.2
Educators who were deaf themselves heavily influenced some of the earliest educational
programs for deaf children. Thomas Gallaudet, an early advocate for educating the
deaf, visited Europe in 1816 seeking educational models to bring back to the United
States. While in Europe, he met a talented young deaf teacher, Laurent Clerc. Together
they opened the American Asylum for the Deaf and Dumb in Hartford, Connecticut, in
1817. The teachers were fluent signers and most were deaf themselves. By using American
Sign Language (ASL), the school demonstrated that literacy could be raised impressively
among the deaf (Baynton, 1996). In her landmark study of the impact of a high percentage
of deaf people living in a Martha's Vineyard community in the 1800s, Nora Groce (1985)
found that graduates of the Hartford School had achieved higher levels of literacy
than many of their hearing neighbors. Unlike the deaf, many hearing people had left
school early to fish or farm. Some of the less educated hearing people would bring
documents to their deaf neighbors to explain. Deafness was so common on the island
that most hearing people learned to sign. As a result of their relatively high education
levels, deaf people held many positions of leadership in the community.
Despite these promising early results, the education of deaf children was severely
set back by oralism in the latter half of the nineteenth century. Spurred on by the
establishment of the Clarke School for the Deaf and by the advocacy of Samuel Gridley
Howe, the founder of the Perkins Institute for the Blind, and of Horace Mann, the
oralist methodology claimed success in educating deaf children by teaching them to
lip-read and speak. This methodology prohibited the use of manual language, as proponents
felt that signing decreased the motivation to learn to speak. Another prominent advocate
of the methodology was Alexander Graham Bell, who was, ironically, married to a deaf
woman. Bell was a staunch supporter of oralism and sought to have sign language banned
from programs for the deaf. In a speech delivered to the National Academy of Sciences
in 1883, he further advocated for the enactment of eugenics laws to forbid the "intermarriage
of deaf mutes" (Baynton, 1996). As Shapiro (1994) points out:
Oralism fit well with the conformist spirit of the times. The Victorian culture was
unsparing toward minority culture. . . . If one did not have speech then one did
not have language and, went the thinking that dated back to Aristotle, was presumably
unable to reason. To remain silent then was to be prey to the devil. All this suggested
that deafness was a sickness, something that needed to be cured. Oralism held out
the hope of correction. (p. 90)
The influence of Bell and other oralist advocates would prove to be surprisingly
enduring, even to this day. This remains true in the education of deaf children as
an enduring legacy of ableism. For many, the deaf "supercrip" is the deaf person
who can read lips and speak, despite the fact that few deaf people master oralism
(Jacobs, 1989; Lane, 1995). Those who have done so tend to be postlingually deaf,
people who became deaf after they had developed language (Jacobs, 1989). Leo Jacobs,
a deaf educator, compares lip-reading with breaking eighty in golf or painting a
masterpiece, since under the best of circumstances only 30 percent of speech can
be read from lip movements Jacobs, 1989).
The grip of oralism on the education of deaf children started to break in the 1960s,
when research began to reveal the benefits of manual communication (Stuckless & Birch,
1966). Many educators of the deaf began experimenting with new communication methodologies,
such as total communication, which involved a combination of speech and signed English.
Another methodology, cued speech, employed handshapes formed near the mouth to aid
lip-reading. Though many viewed these innovations as progress, neither of these methodologies
involved ASL in the way that the Hartford School did a century before. Thus, oralism
continues to have a negative impact on the education of deaf children as an enduring
legacy of ableism.
In the 1970s, important research in linguistics confirmed what many deaf people already
knew: that ASL was a language with its own syntax and grammar, and that manual language
developed naturally in deaf children similarly to the way oral language developed
in hearing children. Timothy Reagan (1985), in his landmark piece in the Harvard
Educational Review, stated, "ASL's linguistic features are now understood, at least
in fairly broad outline. It is a language in every sense of the word, relying on
visual, rather than auditory, encoding and decoding. ASL has a complex, rule-governed
phonology, syntax, and morphology" (p. 270).
Other important research has followed that further supports ASL as the foundation
for language development and educational attainment for deaf children. A particularly
important line of research involves deaf children whose parents are also deaf. These
children, about one in nine deaf children, provide an ideal "natural experiment"
to test assumptions about language development and to investigate the potential negative
impact of ableist assumptions. Most deaf parents communicate with their infants and
toddlers in their natural language, ASL. A number of studies have revealed that these
children display superior language development and thus obtain higher scores on intelligence
measures than deaf children of hearing parents (Courtin, 2000; Sisco & Anderson,
1980; Zwiebel, 1987). Similar findings have been reported in studies conducted on
deaf children of deaf families in Denmark, Israel, and Greece (Lane, 1995).
Further, it is unlikely that deaf parents carry with them the negative cultural views
of people who are deaf. The birth of a deaf baby to deaf parents is not a tragedy
to be grieved, but rather a celebrated event. I have deaf friends who, upon learning
they are about to become parents, have told me that they would prefer that their
child be deaf.
Studies of deaf children whose parents are deaf are revealing. These children start
school with vocabularies comparable to their hearing peers and have higher levels
of educational and occupational success than most deaf children of hearing parents
(Lane, 1995). Comparing students entering school with high levels of ASL ability
with those who have lower levels, Michael Prinz and Philip Strong (1998) found that
those with high ASL ability achieved higher levels of literacy, even when IQ is held
constant. The evidence supporting the need to develop manual language in deaf children
is so compelling that a National Academy of Sciences study concluded, "Parents and
preschool teachers can enhance deaf children's communicative and reading ability
growth by beginning early to communicate with these children through finger spelling
and manual signing" (Snow, 1998, p. 164).
This research underscores the point that language is the fundamental cornerstone
upon which educational achievement is built for all children. Unless children have
well-developed language before learning to read, they are unlikely to achieve high
levels of literacy (Snow, 1998). Deaf children are no different from their hearing
counterparts in this regard. However, the optimal way for these children to learn
language is different because they cannot hear. It seems clear that deaf children
should be encouraged to learn ASL from infancy, and that educational programs should
recognize that a welldeveloped ability in ASL is a strength in deaf children upon
which their future progress rests. The continued adherence to the ableist assumption
that it is better for deaf children to lip-read and speak than to learn sign language
will surely guarantee poor educational results for this population.
Though history and recent research converge to provide clear evidence that recognizing
the importance of developing manual language in deaf children is the foundation for
literacy and for later educational and occupational success, educational practices
often do not reflect these findings. Though deaf infants and toddlers and their families
are entitled to early intervention and special education services from birth, many
deaf children of hearing parents start school with vocabularies of fewer than fifty
words (Shapiro, 1994). This is likely due to the lack of emphasis on the development
of ASL skills in their preschool programs or at home. Further, many of the school
programs these children attend do not recognize the importance of developing and
using manual language. In short, many programs still reflect ableist assumptions
about the deaf.
The ultimate institutionalization of ableist assumptions can be seen in a U.S. Supreme
Court interpretation of IDEA in the case of Rowley v. Board of Education of the Gloversville
Enlarged City School (1993). The Court decided that a deaf girl who was integrated
into a regular class was not entitled to a sign language interpreter because she
was "receiving benefit" - that is, she was passing. This decision in effect says
that it was acceptable for this deaf child to understand only some of what the teacher
was saying. Clearly, this child was not given the same access to educational opportunity
afforded hearing children. Would parents of hearing children tolerate such a standard
being applied to their children's education? School board meetings would be full
of parents demanding change. However, deaf children are few in number and therefore
unlikely to sway a school board. In my view, the Court failed to serve its role of
protecting a minority, a deaf student, from the rule of the majority, the school
board.
Though the deaf community may have lost in court under Rowley, it has been using
its political power to advocate for significant changes in educational programs for
deaf children. Deaf children's low level of educational attainment has been the rallying
point, and federal intervention has been sought. It is noteworthy that, though there
has been a significant deaf intellectual community in the United States since the
founding of Gallaudet University in 1864, deaf people have not had a sufficiently
powerful influence on policymaking involving their own education. This was brought
into sharp relief during the naming of a new president for Gallaudet in 1988. When
two deaf applicants were passed over for a hearing candidate, the campus erupted
in protest and the university was closed down (Shapiro, 1994). The deaf student body
could not accept the continuation of 124 years of hearing presidents at the premier
institution for the deaf. After a well-organized protest with appeals to both the
U.S. Congress and the president of the United States, a deaf individual, I. King
Jordan, was named president.
Another example of the increased role of deaf adults in policymaking occurred in
1990 with the issuance of the Deaf Education Policy Guidance by the deaf Assistant
Secretary of Education Robert Davilla. This document emphasizes the importance of
language development and communication in the education of deaf children. When Judy
Heumann became assistant secretary in 1993, she and I reissued the guidance at the
urging of the deaf community. When IDEA was reauthorized in 1997, the deaf community
sought and achieved some significant changes to IDEA that further supported the centrality
of language development and communication in the education of deaf children. IDEA
now requires that when an Individual Educational Plan (IEP) is developed for a deaf
child, the child's communication needs must be addressed. Some have interpreted these
changes in the law (and I would agree) as challenging the Rowley interpretation of
IDEA and opening the way for a greater use of bilingual approaches to the education
of deaf children (Pittman & Huefner, 2001).
The foundation for the improvement of educational results for deaf children therefore
lies in the rejection of the ableist assumptions that surround their education. Deaf
children can achieve at comparable levels to their hearing peers, not by ill-conceived
attempts to minimize deafness but by recognizing that deaf children optimally develop
language manually and that a high level of ASL ability can serve as a basis for future
educational progress. This is not to say that lip-reading is not an important adaptive
skill for deaf people in a hearing world; it is. However, as a method of language
acquisition it is inefficient and ineffective for large numbers of deaf children.
By allowing deaf children to be deaf and by building on their inherent strengths
through the development of manual language, they will ultimately (and, some might
think, paradoxically) be better able to compete in a hearing world.
The Education of Blind and Visually Impaired Children
The bias of schools against Braille and their failure to teach it to blind and visually
impaired students is another example of how ableist assumptions influence educational
programs. In 1829, Louis Braille invented Braille, a system of raised dots that enabled
blind people to read. Yet, many blind and significantly visually impaired students
are not benefiting from this old technology Johnson, 1996). Though some attribute
this to the rise of newer technologies such as taped books and voice synthesizers
that may be making Braille obsolete (Shapiro, 1994), I believe the failure to teach
blind children Braille is another example of ableism. Reading Braille is a disability-specific
method of reading that many nondisabled people view as unacceptable, preferring that
children with very low vision read print even if they are inefficient readers due
to their vision disabilities, and that totally blind children listen to tapes. As
one young person who has a significant vision disability said to me recently, "I
was taught to read print, not Braille, because everyone felt it would make me more
like sighted people." This, despite the fact that reading print is difficult and
exhausting for her.
The National Federation of the Blind (NFB), an advocacy organization of blind people,
has taken a strong position favoring the teaching of Braille to blind children and
those with other vision impairments:
There's no substitute for Braille in taking notes, reading a speech, looking up words
in a dictionary, studying a complicated text, or just having the fun of reading for
yourself. Talk of forcing blind children to learn Braille shows the prejudice. Nobody
talks of forcing sighted children to learn print. It is taken for granted as a right,
a necessary part of education; so it should be with Braille and blind children. (National
Federation of the Blind, n.d.)
The NFB took action on this issue in the late 1980s by advocating for the passage
of "Braille bills" by state legislatures throughout the country. These bills have
sought to promote the teaching of Braille.
Though some totally blind students are not learning Braille, the controversy around
Braille often revolves around students with limited vision. Some students with vision
impairments can learn to read print or can read print with accommodations such as
large print. If these students have stable, nonprogressive vision conditions and
can learn to read print efficiently, they should. However, when educators and parents
insist that vision-impaired children read print to the exclusion of reading Braille,
many visually impaired children remain functionally illiterate.
Another controversy regarding the education of blind children centers on whether
schools are required to provide orientation and mobility services (O&M) to blind
students under related services provisions of IDEA. O&M teachers teach blind students
how to get around using canes and other means. The goal of these services is to increase
independence. It seems logical that, if the goal of public education is to prepare
students to function in the world, O&M would be a required component of the educational
program of blind children. Though this seems logical, advocates for the blind complained
to me when I worked as the director of the Office of Special Education Programs for
the U.S. Department of Education that they were having difficulty securing these
services because the law at this time did not specifically name the service. Some
have argued that school districts objected to providing these services due to cost,
and this argument may have some merit. However, advocates pointed out that some of
the same districts had hired full-time aides to assist blind students, an expensive
and, in the eyes of many disability activists, potentially harmful practice (Ferguson
& Ashe, 1989). Many advocates believe the schools would have been better off teaching
these kids to navigate on their own using O&M techniques.
In my view, the controversy around the provision of O&M raises broader questions
about ableism in education. I am becoming increasingly concerned with the way I see
school districts, and at times parents, respond to the needs of students with significant
disability by assigning them a full-time aide. Adrian Ashe, a blind woman who teaches
at Wellesley College, cautions, "An aide is not (or at least should not be) a chaperone,
an administrative spy, a surrogate parent, or a personal servant. Any such role turns
the aide into a shield or a barrier between the disabled student and his or her nondisabled
peers" (Ferguson & Ashe, 1989, p. 129).
These concerns are compounded when aides take the place of teachers and compromise
the quality of instruction. One of my graduate students at the Harvard Graduate School
of Education spent a semester observing a child with significant disabilities who
was included in general education classes with the support of a full-time aide. As
a highly experienced and skilled special educator, she was deeply concerned that
the middle school student had not learned to read. After careful observation, she
concluded that he had not been taught to read; instead, the aide viewed it as his
job to read the material to the boy. Therefore, despite the fact that, according
to her assessment, he had normal receptive language and could fully understand language,
and was in a regular classroom where significant resources were being spent on his
education, this boy was being deprived of the opportunity to learn to read.
Assigning full-time aides to children with disabilities rather than, as has been
the case with blind children, teaching them to get around independently through O&M
reflects, in my view, deep cultural prejudices about significant disabilities. That
is, it suggests that people with significant disabilities are weak and incapable
of doing things on their own. The reaction of many educators to the integration of
significantly disabled students into typical schools and classrooms is to demand
full-time aides. For example, when Penny Ford prevailed in her complaint with the
OCR to have Joe attend a regular kindergarten, the "negotiated agreement" between
the school and the Chicago Board of Education was to provide Joe with a full-time
aide. Penny recalls her discomfort with the agreement: "I found it repugnant that
my son's rights were a matter of negotiation. He didn't need an aide. All he needed
was for someone to flip pages for him. Another kid could do that! He already knew
how to read. He also needed some help in the bathroom. That's not a full-time job"
(P. Ford, personal communication, October 2001). Penny's initial discomfort was prescient.
When Joe showed up for school on the first day, he was denied entrance to the classroom
because the aide had not cleared all the personnel hurdles. Already the object of
two years of struggle over his entrance into the school attended by his sisters and
friends, Joe Ford spent the first day of first grade in the school office, not in
the classroom. It seemed the school could not conceive of approaching his education
directly without the intermediary of a paraprofessional.
Like the deaf community, the blind community has sought action by the federal government
to address the shortcomings of the educational system. When the Clinton administration
took office in 1993, representatives of the blind community successfully sought the
issuance of a guidance similar to that issued concerning the education of deaf children.
This guidance emphasized the importance of specialized services such as O&M and supported
Braille instruction. When IDEA was reauthorized in 1997, a requirement was added
to mandate that when teams meet to develop IEPs for blind and visually impaired students,
Braille must be considered. Further, the reauthorized law added O&M as related services.3
Hopefully, these specific legal requirements will begin to change the ableist practices
that have compromised the education of blind and visually impaired children.
The Education of Students with Learning Disabilities
Blindness, deafness, and significant physical disability are relatively rare; their
combined incidence is less than I percent of the total population of school-aged
children (U.S. Department of Education, 1996). On the other hand, students with learning
disabilities (LD) are common, comprising about 5 percent of children. Although definitional
arguments concerning the identification of these children abound (Lyon et al., 2001),
educators have long recognized the phenomenon of children who seem intellectually
able but experience marked difficulty learning to read. This condition, commonly
known as dyslexia, is by far the most frequent form of learning disability, affecting
about 80 percent of the learning disability population (Lyon et al., 2001). Given
its prevalence, one might think that these children would be less likely to be subjected
to inappropriate ableist practices. However, the available evidence shows that these
children are subjected to inappropriate educational approaches at an alarming level.4
The National Longitudinal Transition Study (NLTS) investigated the educational results
of a large sample of students with disabilities who attended high schools in the
mid-1980s. This study, the largest and most thorough of its kind, paints a less than
satisfactory picture (Wagner, Blackorby, Cameto, & Newman, 1993). The NLTS, along
with other data such as the performance of students with disabilities on statewide
assessments and more recent research, confirms that the educational attainment levels
of students with learning disabilities is less than adequate. Students with learning
disabilities drop out of school at relatively high rates - about twice that of nondisabled
students (Wagner et al., 1993). These students also participate in higher education
in relatively small numbers. NLTS also documents that relatively large numbers of
these students are not taking challenging academic subjects. Given these findings,
it might not be surprising that more recent data indicates that students with learning
disabilities fail statewide assessments at alarming rates (Katzman, 2001).
I believe the reasons for the lack of acceptable educational outcomes for students
with learning disabilities are complex. The fact that dyslexia has as its main symptomatology
the failure of children to learn to read, a primary goal of education for all students,
and that dyslexic children are not the only children who struggle with reading means
that explanations for this failure go to the very structure of schooling. Therefore,
using an ableist lens alone is inadequate. Some students' failure to learn to read
may be due to poor instruction, thus compounding the impact of disability. However,
there is evidence that ableist assumptions may have a particularly negative influence
on the education of those children who struggle the most with learning to read -
dyslexic children.
The failure of students to learn to read has been of concern to educators and the
general public for some time, therefore, significant resources have been directed
to the study of reading failure. In fact, early reading may be the most researched
area of education. As schools implement standardsbased reforms, educators are increasingly
looking to research to help guide schools in improving their performance. To meet
this need, the U.S. Department of Education (DOE) contracted with the National Research
Council (NRC) of the National Academy of Science to conduct a research synthesis
in the area of early reading. The resulting book, Preventing Reading Difficulties
in Young Children (Snow, 1998), has become the biggest seller at the NRC. As one
party involved in the initial study design, the DOE insisted that the synthesis employ
an inclusive design. The DOE considered this important because any inquiry into disabled
children's failure to learn to read must be viewed in the overall context of how
children learn to read. Conversely, given the relatively large number of students
who have disabilities, the failure to address the needs of disabled students in a
study of this magnitude would render the study noncomprehensive.5 This study, therefore,
contains a wealth of information about those students who have the most difficulty
learning to read, including those likely to be dyslexic. Along with this study, more
recent work published by researchers funded by the National Institutes of Health
(NIH) provides a converging picture of how schools handle young students with dyslexia.
Adding the data from NLTS and other sources, the view through the ableist lens is
most revealing.
One example of how ableist assumptions may be impeding the effective education of
children with disabilities has to do with the reluctance to intervene on behalf of
children experiencing marked difficulty with learning to read. Some of this reluctance
may be due to a lack of appropriate options or inadequate teacher preparation (Lyon
et al., 2001). However, some of the inaction may be due to the desire of schools
not to label children, which undoubtedly reflects the deep stigma associated with
disability in our culture. The mere label of disability carries such negative connotations
that many educators and some parents seek to avoid it. Another reason that some may
seek to avoid labeling is the fact that labeling may result in inferior special education
placements. These placements often reflect the ableist notion that disabled children
should not be challenged. Thus, some educators and parents justifiably avoid such
placements. Finally, the federal definition of learning disability, which requires
that a child exhibit a discrepancy between intelligence (IQ) and performance, may
also inhibit early intervention. That is, the child must first fail to learn the
material that his intelligence would indicate he should be able to learn before he
can establish eligibility for special education services. From my perspective, the
ethics of allowing young children to fail at learning to read without providing intensive
help is questionable for all children - disabled and nondisabled.
The dilemma parents and educators face around the issue of labeling need not exist
if schools employ research-based practices and improve their special education programs.
The NIH has conducted an extensive set of studies using large data sets that examine
the nature of early reading failure. These studies have documented that relatively
large numbers of students experience significant difficulty with initial reading.
There is evidence that of the 12 to 18 percent of the K-1 student population that
has the most difficulty learning to read, research-based interventions are effective
with 70 percent (Lyon et al., 2001). Though not all students fully benefited from
these interventions, they can serve to identify those students who are highly likely
to need more extensive help - that is, those who may have a disability that will
require accommodations and support throughout their schooling. Once it is clear that
a child has not responded to powerful interventions and is still struggling with
reading, that child should get the protections of the IDEA.
Though early intervention for students experiencing reading difficulty will help
identify students who may have LD, educators need to ensure that once children are
identified they receive the types of services and supports that will maximize their
educational attainment. We must seek to remove the stigma associated with disability
labels. Further, as with their peers who have other disabilities, ableist practices
are evident in current practices with students with learning disabilities. The education
of these children tends to be inordinately oriented toward the presenting characteristics
of the disability and suffers from low expectations.
Most of these children are placed for part of the day in special education resource
rooms and part of the day in regular classes. Some are placed in regular classes
all day. For large numbers of these students, neither regular nor special class placements
seems to be meeting their needs. Research looking at the type of instruction LD students
experience in special classes raises serious issues. Sharon Vaughn and her colleagues
(2000) studied elementary schoolchildren with LD assigned to special classes and
found that their instruction was characterized by large multi-aged groups and was
largely nondifferentiated. Other studies have found that special education placement
results in students reading less (Allington & McGill-Franzen, 1989).
Some have responded to the failure of certain special education placements with a
call for full inclusion in general education classes. However, research has raised
questions concerning mainstream placements as well. NLTS documented that a large
number of students with LD who were placed in general education classrooms did not
receive accommodations or support. Such students were more likely to fail and drop
out of school. Another more recent study documented that 80 percent of the poorest
readers placed in regular classrooms made no progress over an entire academic year
(Klinger et al., cited in Lyon et al., 2001).
Students with dyslexia can learn to read. However, they need more intensive help
to do so, and even with the best approaches they are likely to experience significant
difficulty with reading, writing, and spelling throughout their schooling. Torgesen
(2000) and his colleagues have demonstrated impressive results with intensive intervention
for severely disabled readers in grades three through five over an eight-week period.
However, even though these students experienced gains in certain reading skills,
they remained very slow readers. The picture that emerges from the research on remediation
after grade two shows that reading improvement can continue but that those who have
the most difficulty reading are likely to continue to have these problems and that
their problems compound. Children with poor reading skills avoid reading and thus
build up enormous educational deficits (Lyon et al., 2001). Given the centrality
of reading to most instruction, severe reading problems can affect all areas of students'
curricular attainment.
The research discussed thus far indicates several clear implications for educational
practice. First, there is a population of children who are likely to experience significant
difficulty with reading even with the best interventions. Dyslexia is clearly a disabling
condition. Second, reading improvement for these students can continue to occur throughout
their schooling if that intervention is sufficiently intensive and appropriate. Third,
those with the most severe problems in reading print are likely to experience increasing
difficulty in school as the cumulative effects of reading deficiency become apparent.
Fourth, significant numbers of these students are receiving inappropriate educational
assistance in terms of both the interventions they receive and their access to the
curriculum.
Though research strongly indicates that students with LD need more intensive services
in reading than their nondisabled peers and that they should receive this assistance
throughout their schooling, focusing their special education program solely on learning
to read is not appropriate. For students with LD, this reflects the ableist assumption
that special education's role should be to change disabilities even if that is not
fully possible. These children must also have access to the rest of the curriculum
with appropriate accommodations and supports. Therefore, educators planning programs
for students with LD must strategize around how these students will most efficiently
access the curriculum, given that they are typically laborious readers. Though this
seems like common sense, there is significant evidence that large numbers of students
with LD are not getting sufficient accommodations, services, and supports to give
them equal opportunity to benefit from the curriculum.
As previously cited, NLTS documented that many students with LD receive relatively
low levels of service and do not receive accommodations and supports in general education
classes. Other research on IEPs has shown that these documents typically focus on
discrete skills and are not connected to the overall curriculum (U.S. Department
of Education, 1995). Should it be a surprise to anyone that so many of these children
are achieving at such low levels?
Again, I believe that ableism at least partially explains our failure to better educate
those with LD. First, as is the case with other disabilities, the programs for these
students often focus on the characteristics of their disability, their reading deficiencies,
to the exclusion of their total educational needs. Like the deaf who must learn to
lip-read and speak before they can access the curriculum, it appears that many believe
that those with LD must learn to read at grade level before they can access other
subjects. This approach clearly magnifies the negative educational impact of the
disability. This situation was brought home to me when I was associate superintendent
of schools in Chicago in 1992. A general education teacher asked to meet with me
concerning students with LD in her class. She told me that she was also a parent
of a child with LD and that she knew a good deal about the disability. She went on
to say that she had a number of students in her classes with LD who were failing
and that she had not been seen by anyone from the special education department in
her school. Later a staff member met with special education staff in the school who
informed her that it was not their job to meet with the general education teachers.
They viewed their responsibility as only working on the goals and objectives in the
IEPs, which were largely discreet skills centered on reading and writing. Therefore,
these students were being expected to handle text four and five grade levels above
their reading level without accommodation. No wonder they were failing.
Can students with LD access curriculum above their reading level? Of course they
can. However, for many of these students, that access cannot be dependent on their
ability to read print or write at grade level. Fortunately, there are accommodations
available that can help students with LD to access text written above their reading
level. Taped books have been available to blind students for many years and are increasingly
used by people with dyslexia. Recordings for the blind recently changed its name
to Recordings for the Blind and Dyslexic to reflect the changing demand for their
services. Also, as more text is digitized, computers will be able to read text using
screen readers. Other techniques such as increasing the ability of students to handle
text through pre-teaching multisyllabic and technical words can greatly increase
students' ability to handle difficult texts. Word processing and spell-checks can
greatly increase the ability of students with LD to produce writing assignments.
Though there are effective ways by which students with LD can access the general
education curriculum, schools may have to modify some deeply held beliefs about what
constitutes acceptable student performance in order for students with LD to benefit
from these technologies. In many places, students are required to handle grade-level
or higher text in order to be mainstreamed into regular classes. Taped books are
not available or are not allowed. Still other schools do not allow students to use
computers when taking exams, thus greatly diminishing some students' ability to produce
acceptable written work. Though some may defend this rigidity as a means to maintain
standards, for students with LD this posture will likely lead to lower educational
attainment.
The late disabilities advocate Ed Roberts had polio as a child, which left him with
significant physical disabilities, including the need for an iron lung. He attended
school from home in the 1960s with the assistance of a telephone link. When it was
time for graduation, the school board was going to deny him a diploma because he
had failed to meet the physical education requirement. His parents protested and
Ed eventually graduated (Shapiro, 1994). It would be difficult to imagine that happening
today, given disability law and improved societal attitudes toward disability. Yet,
reflecting widespread ableist assumptions, students with LD are routinely required
to read print at grade level to access educational opportunities. As the disability
movement has demonstrated over and over, there is more than one way to walk, talk,
paint, read, and write. Assuming otherwise is the root of fundamental inequities.
Students with Disabilities and Standards-Based Reform
A disability advocate recently sought my advice on the placement of an eightyear-old
student with disabilities. The boy has various communication and motor disabilities
due to brain damage at birth. He has received excellent early intervention and preschool
services. His speech, though labored, is easily understood and his vocabulary approximates
that of peers his age. He has some difficulties in coordination, fine motor skills,
and behavior, but is not significantly cognitively impaired. Unfortunately, his current
school placement is woefully inadequate. At his most recent IEP meeting, his mother
asked what he was learning in science. She wanted to make sure he was being prepared
to take the statewide assessment in grade four. The special education teacher responded,
"We're not doing science. We're concentrating on fine motor development." Again,
like too many children with disabilities, his educational program concentrates inordinately
on the characteristics of his disability at the expense of access to the curriculum.
This example illustrates why many disability advocates view standardsbased educational
reforms as holding great promise to help eradicate the most insidious ableist assumption:
that people with disabilities are not intellectually capable. The education of students
with disabilities has been plagued by low expectations, which is why many in the
disability community have sought to have students included in state and national
accountability systems (Thurlow, 2000). The hope is that by including students in
statewide assessments, more attention will be paid to assuring that these students
receive quality programs (McDonnell, McLaughlin, & Morrison, 1997). In 1997, advocates
were successful in getting IDEA amended to require students with disabilities to
be included in statewide assessments.
It is noteworthy that, before this federal requirement, most states excluded most
students with disabilities from these important accountability systems (Thurlow,
2000) - this at a time when most states were implementing various forms of standards-based
reform. A number of explanations may address this exclusion. It is possible that
disabled students were viewed as not capable of achieving standards. Another explanation
might be that the performance of disabled students was not important to track. Both
of these explanations clearly reflect ableist attitudes, that disabled students are
either incapable or unimportant. Another explanation is that in high-stakes environments
school districts may actually be placing more students in special education to avoid
accountability (Allington & McGill-Franzen, 1989). A more positive view might be
that states simply did not know how to accommodate students with disabilities in
assessments. There are many technical issues involved in the inclusion of students
with disabilities, especially those who receive accommodations (Koretz & Hamilton,
2000). Though the truth probably lies somewhere among these views, the exclusion
of students with disabilities from state and local assessment systems may result
in their exclusion from the curriculum and thus reinforce the status quo of low expectations,
leaving students with disabilities seriously undereducated. Fortunately, this exclusion
is now illegal.
Though there was widespread exclusion of students with disabilities from statewide
accountability systems before the passage of the 1997 amendments to IDEA, some states
had begun to implement inclusive policies prior to the federal requirement. These
states provide an interesting window on the impact of these policies. There is some
emerging evidence that indicates that inclusion in statewide assessment may be improving
the educational opportunities of students with disabilities.
In New York State, where an emphasis on including students with disabilities in the
Regents Exam began in 1998, the number of students passing this high-level test has
greatly increased. Comparing data from 1997 and 2000 shows dramatic change. In 1997,
only 4,419 students with disabilities took the Regents English Exam, with 3,414 passing.
Three years later, over twice as many disabled students passed the test as had taken
it in 1997. In 2000, 13,528 took the test and 9,514 passed (New York State Department
of Education, 2001). Prior to this inclusionary push, some school districts in the
state did not have one student with disabilities taking the test. It appears that
in these school districts, the view was indeed ableist; no child with disabilities
was viewed as capable of passing this test. The impact of the exclusion of students
with disabilities from the Regents over the years was undoubtedly significant. Important
benefits can result from passing the Regents, from scholarships to college admissions.
Further, the widespread exclusion from the Regents prior to 1997 probably meant that
thousands of students with disabilities did not take higher level high school courses.
In Maryland, where students with disabilities have been included in the state's basic-skills
test, many districts have shown steady progress to the point where the vast majority
of students with disabilities are passing the test. Maryland has years of disaggregated
performance data. These data were used to help negotiate an agreement to end a longstanding
class action suit concerning students with disabilities in Baltimore City. This agreement
broke new ground in that it focused on educational outcomes (Vaughn, G. et al., 2000).
The previous agreement, like many special education class action suits, had focused
largely on processes (Hehir & Gamm, 1999). The previous agreement made no mention
of academic performance in any area. Though the agreement went into effect in the
2000-2001 school year and thus it is too soon to evaluate its impact, the city's
special education director speaks positively of how the agreement is focusing staff
on teaching and learning (G. Amos, personal communication, 2001).
Though the inclusion of students with disabilities in statewide assessments shows
great promise, the imposition of high-stakes consequences for students who do not
perform well on these tests gives rise to serious concerns. This is particularly
the case when state policy requires the passage of highlevel tests in order to receive
a diploma or to move from grade to grade. Concerns range from technical issues involving
construct validity to the impact of failure on students' persistence in school.
Given the nature of disability and the type of assessments most states employ, the
inclusion of disabled students in statewide assessments is complicated. Many disabled
students require accommodations specific to their disability, and issues of construct
validity may arise out of the accommodations students receive (Fuchs & Fuchs, 1999;
Koretz & Hamilton, 2000). For instance, a test that seeks to determine if a child
can read print is invalidated if a test is read to the child. On the other hand,
a math test may be invalid if it is not read to a child who is print-disabled because
the child has no way to demonstrate the math she knows if she has to read print to
do so. The issues of construct validity are complex and, given the relative lack
of experience in including disabled students in large-scale assessments, significant
research will be required before we can be confident that these assessments are accurately
measuring what students know and are able to do (Koretz & Hamilton, 2000).
Though there are numerous unresolved technical issues involved in including students
with disabilities in assessments, high-stakes decisions are being made that have
the potential to deny students important opportunities such as promotion or graduation.
Further, beyond the technical issues is the nature of the constructs themselves.
A major concern is whether the constructs are sufficiently broad to enable disabled
students to demonstrate what they know and are able to do. A case that came to my
attention when I was working at the DOE illustrates this point. The case involved
a student who had become blind during high school. Although he was beginning to learn
Braille, he was using taped books as his main means of learning from print. The state
policies required all students to pass a test to graduate. The issue was whether
he could participate in the language arts test through a taped administration. One
of the constructs to be evaluated by this test was the ability to read print. He
could not read print because he could not see print. Of course he was not the only
blind child in the state, and state policy allowed the state test to be administered
in Braille. This boy, however, was not a proficient Braille reader because he was
newly blind. The state decided to waive its policy that prohibited reading the language
arts aloud as an allowable accommodation for this student.
This example goes to the heart of the issues of construct validity, accommodations,
and ableist assumptions regarding acceptable performance modes. The fundamental question
here is this: What is reading? The state had previously answered the question that
reading was reading print or reading Braille. Extracting meaning from recorded text
was not considered reading. Therefore, the statewide test was designed to measure
these two modes of reading. Answering comprehension questions based on listening
to recorded text would thus violate the construct validity of the test. However,
significant numbers of disabled people use recorded text as their reading mode. These
include people with a range of disabilities beyond blindness, including people who
have dyslexia and people with certain types of cerebral palsy that make focusing
and reading print exhausting and inefficient. Joe Ford, for example, uses taped books
for this reason. Even though the use of recorded text is widespread, some states
refuse to allow taped administration of language arts tests, thereby refusing to
recognize the mode that many disabled people use to read. Applying this narrow definition
of reading to highstakes decisions may mean that large numbers of disabled students
will be denied diplomas and thus future educational opportunity. Further, such a
decision is likely to discourage the use of taped texts in schools, even though they
may represent the most efficient means by which some students with disabilities gain
access to the curriculum.
Even if states broadly define modes of performance and successfully deal with measurement
issues around construct validity, another issue is arising in states that have high-level
content/high-stakes assessment programs - that is, the problem of students who are
incapable of passing the high-stakes tests due to the nature of their disability.
This is particularly true of students with cognitive disabilities or mental retardation.
Though it is important to have high expectations for all students, if states or local
districts have diploma or promotion policies that assume the mastery of high levels
of skill and knowledge, students with mental retardation, due to the pervasive nature
of their significantly subaverage intellectual functioning, may be subject to inappropriate
retention and will unlikely receive diplomas. Most in the field of special education
would agree that keeping kids with mental retardation back because they have not
achieved grade-level work is absurd and serves no useful purpose. Indeed, such a
practice is likely to be detrimental if these children lose contact with their age-appropriate
peers. The larger issue is whether these children will "graduate" and receive some
form of diploma that recognizes their accomplishment in school, or drop out of school
because they do not see the possibility of graduation. This is not an insignificant
societal issue in that as many as 2 percent of children have some form of cognitive
disability (U.S. Department of Education, 1996). Further, if these children receive
high-quality services in school, they have a higher likelihood of being employed
upon leaving school. Dropping out is associated with significantly poorer outcomes
for all disabled kids (Wagner et al., 1993). Therefore, setting standards policies
without these children in mind may have a devastating impact on a relatively large
number of students.
A final point about high-stakes policy is that some aspects of the impact of these
policies on students with disabilities are relevant for nondisabled students as well.
There is relatively little support in the research for the use of high-stakes promotion
policies as a vehicle for promoting higher achievement. In High Stakes: Testing for
Tracking, Promotion and Graduation, Jay Heubert and Robert Hauser (1999) conclude,
"The negative consequences, as grade retention is currently practiced, are that retained
students persist in low achievement levels and are more likely to drop out of school"
(p. 285). This finding also is consistent with the finding in NLTS that failing high
school subjects is associated with kids with disabilities dropping out.
Toward Ending Ableism in Education
There is much that educators, parents, and advocates can do toward ending ableism
in education. As is the case with racism and sexism, progress toward equity is dependent
first and foremost on the acknowledgment that ableism exists in schools. The examples
given here have centered around three disability groups: the deaf, the blind and
visually impaired, and the learning disabled. However, I believe that deconstructing
dominant educational practices applied to other disability groups can yield similar
results. Ableist assumptions and practices are deeply embedded in schooling. Further,
the absence of discussion and dearth of scholarly inquiry within mainstream educational
circles concerning the effects of ableism is stunning.
Though the lack of attention to ableism in schooling is unfortunate, activists within
the disability community have long recognized its impact (Rauscher & McClintock,
1997). Therefore, as more adults with disabilities take on more powerful roles in
society and seek to influence schooling, the attention to these issues will hopefully
increase (Shapiro, 1994). In addition to this political force, the lack of acceptable
educational outcomes for large numbers of children with disabilities in an era of
standards-based reform should force a reexamination of current practices. Fortunately,
there is a foundation in both research and practice upon which to build a better
future. Schools can take action now. I offer the following suggestions:
Include disability as part of schools' overall diversity efforts. Schools are increasingly
recognizing the need to explicitly address diversity issues as the country becomes
more racially and ethnically diverse. Some schools are expanding diversity efforts
to include disability. Recently, a local high school student with Down's syndrome,
whom I had met at a school assembly devoted to issues of disability rights, addressed
one of my classes. She stated, "There are all kinds of kids at my school: Black kids,
Puerto Rican kids, gay and lesbian kids. Meagan uses a wheel chair. Matt's deaf,
and I have Down's syndrome. It's all diversity." Her high school has done a great
job of including disabled kids and has incorporated discussions about disability
in its efforts to address diversity issues. Adults with disabilities address student
groups and disability is presented in a natural way. Students learn about people
with disabilities who have achieved great things as well as those who live ordinary
lives. People with disabilities are not presented in a patronizing or stereotypical
manner. Deaf people are not "hearing challenged" nor are people with mental retardation
"very special." Ableism is not the norm; disability is dealt with in a straightforward
manner. In schools like this, students with disabilities learn about their disabilities
and learn how to be self-advocates (Jorgensen, 1997).
Encourage disabled students to develop and use skills and modes of expression that
are most effective and efficient for them. This article has sought to demonstrate
that the strong preference within society, reflected in school practice, to have
disabled students perform in the same way that nondisabled children perform can ultimately
be handicapping for some students. This is not to say that it is not desirable for
disabled kids to be able to perform in the way nondisabled kids perform. For instance,
deaf students who can read lips have a competitive advantage in a hearing world.
However, assuming that most deaf children can develop elaborate language through
oral methods has been proven false, and employing these methods without allowing
for the natural development of language almost assures poor language development.
What may appear to be a paradox to some is that a deaf child who has well-developed
language through learning ASL from birth may actually have a higher likelihood of
reading lips because he simply has a larger vocabulary. The problem is not, therefore,
in the natural desire of parents and educators to have children be able to perform
in a typical manner, but rather the missed educational opportunities many disabled
kids experience because of a lack of regard for what are often disability-specific
modes of learning and expression.
Special education should be specialized. There has been a persistent debate in the
special education literature over the degree of specialization needed by special
educators (Biklen, 1992; Jorgensen, 1997; Milofsky, 1974; Skrtic, 1991; Will, 1986).
In 1970, Burton Blatt quoted Alice Metzner's feelings about special education that
continue to be echoed by others: "The problem with special education is that it is
neither special nor education" (Metzner, quoted in Blatt, 1970, p. 21). This critique
reflects the well-documented history of inferior education experienced by many in
special classes at the time (Kirp, 1974). This critique of special education persists
to this day with considerable support from research (Gartner & Lipsky, 1996; Wagner
et al., 1993).
The notion that once children are placed in special education they receive a different
education should be rejected. This is yet another example of ableism. Though students
with disabilities may have individual needs, by and large their education should
be based on the same curriculum as that of nondisabled students. This is why advocates
worked so hard to amend IDEA in 1997 to specifically require IEP teams to address
issues of curricular access. Deafness does not mean students should not be taking
physics and dyslexia should not preclude access to great literature. Viewed in this
light, special education should not mean a different curriculum, but rather the vehicle
by which students with disabilities access the curriculum and the means by which
the unique needs that arise out of the child's disability are addressed. This role
requires a good deal of specialized knowledge and skill.
Unfortunately, one by-product of the well-justified critique of special education
practice has been the minimization of the need for specialization (Biklen, 1992;
Jorgensen, 1997; Will, 1986). Motivated by the desire for greater inclusion, particularly
for those with cognitive disabilities, personnel preparation programs have minimized
the need for specialization. In many states, specialized preparation of special education
personnel is minimal and requires preparation as a general educator first. Though
this is desirable in the ideal, this emphasis on general education may take away
from the need to learn specialized skills and also may inadvertently be contributing
to the increasing shortage of special education and related services personnel (U.S.
Department of Education, 1996).
If one accepts that the role of special educators and related services personnel
is to help disabled children access the curriculum and meet the unique needs that
arise out of their disability, the need for specialization should be obvious. Teaching
Braille, knowing how to help students with significant communication disorders to
use communication devices, developing positive behavioral interventions for a student
with autism, and providing a comprehensive approach to accommodating the curriculum
while continuing to assist a dyslexic student in learning to read are but a few of
the specialized competencies required to assure full access to education for students
with disabilities. Though it is important to increase the skills of regular educators
in accommodating and modifying instruction for students with disabilities, it is
unrealistic to assume that all regular educators can possess these skills. The lack
of availability of specialized support has been cited in recent research as a reason
some students were placed in segregated settings though they otherwise may have been
served in inclusive settings (Hanson et al., 2001). Well-trained special educators
are needed to assist general educators and the students they teach in inclusive settings
and, at times, to provide intensive instruction outside those settings.
The need to assure that special educators learn specialized skills is not an argument
for traditional categorical (by disability) special education teacher-training programs.
Such programs often reinforce existing approaches that focus on the characteristics
of disability to the exclusion of access to the general curriculum. Further, some
traditional programs are not teaching the specialized skills required by students'
IEPs. For instance, when I worked at the Office of Special Education Services, advocates
for the blind complained that many "vision teachers" could not teach Braille. A review
of existing teacher-training programs for the vision impaired by the U.S. Department
of Education revealed that many programs did not teach this skill. This lack of disability-specific
skill focus is not confined to the field of blindness. Examples of such deficiencies
exist in virtually all areas of special education teacher preparation. A number of
deaf advocates have complained that many teachers of the deaf are not proficient
signers, a complaint that reflects the controversies about oralism in the field.
LD advocates have been so concerned about the lack of appropriate skills on the part
of both regular and special educational personnel that the National Center on Learning
Disabilities sponsored a summit on teacher preparation in 1996. A major concern emerged
over the lack of appropriate training in the area of teaching reading to dyslexic
students.
We need to develop clear standards for special education teacher-- preparation programs
that recognize the specific needs of disabled students and ensure that teachers have
the skills necessary to develop the individualized programs that these children need.
These programs must explicitly challenge the ableist assumption that the manner in
which nondisabled children perform school-related tasks is always the preferred goal
for disabled students. Teachers must be able to give these kids the skills that will
enable them to perform at their maximum level and provide their regular education
teachers with the help they need to assure maximum access to the curriculum. Without
special education teachers with disability-specific skills, children with disabilities
will continue to lack the skills they need to most efficiently and effectively deal
with the demands of school and life.
Move away from the current obsession with placement toward an obsession with results.
The movement to include greater numbers of students with disabilities, particularly
those with significant cognitive disabilities, in regular education classes has had
a profound effect on the education of students with disabilities. Over the past decade,
more and more students with disabilities are educated for more of the day in regular
education classrooms (U.S. Department of Education, 2000).
The inclusion movement in education has supported the overall disability movement's
goal of promoting societal integration, using integration in schooling as a means
to achieve this result. In 1977, disability activists took over federal offices in
San Francisco for twenty-five days, demanding that regulations for implementing Section
504 of the Rehabilitation Act, the first federal act to broadly ban discrimination
based on disability, be released. Of particular concern to the protesters were leaked
draft regulations that provided for separate segregated education for disabled students.
Judy Heumann, one of these protesters, stated, "We will accept no more segregation"
(Shapiro, 1994). The final rules were revised to encourage integration in schooling,
and the newly passed PL 94-142 (later renamed IDEA) incorporated the current requirement
that children be educated in the least restrictive environment (i.e., in regular
classes as much as is appropriate for the child).
The strong legal preference for placement in regular classes, coupled with the political
movement of disability activists and parents, has resulted in significant positive
change for students with disabilities, who are moving on to jobs and accessing higher
education at unprecedented levels (Hehir & Gamm, 1999). Virtually every school has
had to confront the issue of inclusion as parents seek integration for their children
with disabilities. However, like all change movements, inclusion has encountered
opposition. Some opposition has reflected deeply held negative attitudes toward people
with disabilities similar to that experienced by Joe and Penny Ford when he sought
enrollment in first grade. I can recall a principal challenging me in a large public
meeting concerning our efforts to promote inclusion in Chicago: "You don't really
mean kids who drool in regular classes?" The reaction against the integration of
students with significant disabilities into regular schools and classrooms has been
so strong that TASH, an advocacy group promoting integration, adopted the slogan,
"All means all," which reflects the group's efforts to clarify its goal to promote
integration for students with significant disabilities.
Another source of criticism has come from within the disability community (Kauffman
& Hallahan, 1995).6 Deaf advocates have expressed concerns over the lack of language
development and communication access many deaf children experience in regular classes
(Lane, cited in Kauffman & Hallahan, 1995). Supported by some of the research cited
above, advocates for the learning disabled have questioned the ability of regular
education classrooms to provide the intensive help these students need for skill
development (Fuchs & Fuchs, 1994, 1995). These criticisms receive support from research.
The NLTS documented that many students integrated into regular education classrooms
did not receive much in the way of accommodation or support, and that many who were
integrated into regular classes failed, thus increasing their likelihood of dropping
out. The issue is so controversial within the community that virtually every disability
group has developed a position. A review of websites reveals, for example, TASH's
strong support for full inclusion and deep reservation on the part of the Learning
Disabilities Association of America (see www.tash.org and www.ldanatl.org).
The controversy over inclusion within the disability community is ultimately dysfunctional
and allows those who would limit the rights of students with disabilities to use
this as a wedge issue. Fortunately, the community united during the reauthorization
of IDEA in 1997 to help prevent a weakening of the act. However, threats to IDEA's
fundamental protections remain. In 2001, Congress considered amendments to the Elementary
and Secondary Education Act that would enable schools to fully exclude some students
with disabilities. In order to fight these regressive provisions, the community must
be united.
I believe the lens of ableism provides a useful perspective through which the inclusion
issue can be resolved within the disability community. First, there needs to be a
recognition that education plays a central role in the integration of disabled people
in all aspects of society both by giving children the education they need to compete
and by demonstrating to nondisabled children that disability is a natural aspect
of life. Central to this role is the need for students with disabilities to have
access to the same curriculum provided to nondisabled children. Further, education
plays a vital role in building communities in which disabled children should be included.
Therefore, for most children with disabilities, integration into regular classes
with appropriate accommodations and support should be the norm.
However, the lens of ableism should lead to the recognition that for some students
certain disability-related skills might need attention outside the regular classroom.
Learning Braille or ASL or how to use a communication device are typically not in
the curriculum and might be more efficiently taught outside the mainstream classroom.
The dyslexic high school student who needs intensive help in reading may feel deeply
self-conscious if such instruction is conducted in front of his nondisabled friends.
The 19-year-old student with a significant cognitive disability may need to spend
a good deal of time learning to take public transportation, a skill that will ultimately
increase her ability to integrate into the community as an adult. Nondisabled students
do not spend time in school learning this skill because they learn this easily on
their own. The nature of mental retardation is such that this type of learning does
not typically happen incidentally; it must be taught over time and within the context
in which the skill will be used (Brown et al., 1991). Uniting around the goal of
societal integration and recognizing that the difference inherent in disability is
a positive one that at times gives rise to disability-specific educational needs
may help advocates move away from the fight over placement to one that focuses on
educational results.
Promote high standards, not high stakes. An important point to reiterate here is
that the most damaging ableist assumption is the belief that disabled people are
incapable. Therefore, the movement to include students with disabilities in standards-based
reforms holds promise. However, high-stakes testing that prevents students from being
promoted or from receiving a diploma based on performance on standardized tests is
problematic, given the concerns previously cited about basic access to the curricula
and those surrounding the construct validity of the tests. In a very real sense,
some students with disabilities will have to become nondisabled in order to be promoted
or graduate. This is ableism in the extreme. Thus, a promising movement, standardsbased
reform, may ultimately reinforce current inequities if performance on high-stakes
tests becomes the only means by which disabled students can demonstrate what they
know and are able to do. As such, disability advocates should oppose high-stakes
testing. It is important to note that disabled students are not the only group for
whom high-stakes testing is being questioned (Heubert & Hauser, 1999). Other groups
that have been poorly served by our educational systems, such as children from high-poverty
backgrounds and children with limited English proficiency, may be equally harmed
by these policies.
Employ concepts of universal design to schooling. A principle of disability policy
that has evolved is the concept of universal design. First applied to architecture,
this principle called for the design of buildings with the assumption that people
with disabilities would be using them. With the legal backing of the Americans with
Disabilities Act, these principles are applied increasingly to new construction and
renovation of public buildings. Ramps, automatic door opening devices, accessible
toilets, and fire alarm systems with lights activated for the deaf are examples of
universal design features incorporated into contemporary buildings. Other examples
extend to technologies. Captioning devices are required features on all televisions
and digital text can be read from computers with screen readers. Universal design
allows for access without extraordinary means and is based on the assumption that
disabled people are numerous and should be able to lead regular lives.
However, the concept of universal design has yet to become widespread in schooling.
For instance, even though learning disabilities are common in students, we have yet
to design our reading programs with these children in mind (Lyon et al., 2001). We
tend to have "one size fits all" reading programs in the primary grades. This is
true of other areas as well, such as how schools handle students with disabilities
that affect behavior. Using the analogy of architecture, we often attempt to retrofit
the child with inappropriate interventions after they have failed in school, rather
than design the instructional program from the beginning to allow for access and
success. And, as is the case with architecture, the failure to design universally
is inefficient and ineffective.
An interesting by-product of universal design is the benefit it brings to nondisabled
people as well. People pushing baby carriages appreciate curbcuts. Hearing people
trying to keep up with the Super Bowl in a noisy bar can do so via captioning. The
same can be said for education. Reading programs that are successful with dyslexic
students will be better able to reach those who may be struggling for other reasons.
A school that includes a child with autism who has difficulty with school behavior
requirements is likely to be a school that can serve others with behavior problems
more effectively (Sugai, Sprague, Horner, & Walker, 2000). However, I do not believe
that disability services should be justified on the basis of their impact on the
nondisabled. Universal design is a matter of simple justice. I mention these examples
here simply to increase the force of the argument that universal design is truly
universal in its impact.
Epilogue
I would like to conclude this piece with an update on Joe Ford. He is currently a
senior in high school and has applied to college. His Scholastic Aptitude Tests scores
place him within the top 5 percent of his peers, so competitive schools have been
vying for his attendance. I am pleased that Harvard College will be benefiting from
Joe's presence in September 2002. This success, however, has required the constant
advocacy of both Joe and his mother. Although universal design has not been a feature
of his schooling, he has clearly benefited from inclusive education, and at times
he has benefited from specialized services. At other times, however, the lack of
specialized services has put a great burden on both Joe and Penny to find the most
efficient means for him to access education. They have found that the most efficient
way for him to read is through taped books, though other accommodations, particularly
in certain areas of math instruction, have been lacking. He has no trouble moving
about his city in his motorized chair, aided by an accessible public transportation
system. One of his favorite pastimes is going downtown to challenge all comers to
chess matches. He usually wins. Deeply interested in politics, he does not miss an
opportunity to challenge the liberal views of this writer. Penny's intuitive challenge
to ableism is paying off, and she looks forward to the day when Joe will not only
support himself, but help support her.
Footnote
1 Section 504 of the Rehabilitation Act of 1973 was the first federal law that guaranteed
education to all disabled children by prohibiting discrimination against the disabled
by any institution that received federal funds. Therefore, given the fact that public
schools accepted federal money, they were covered under the act. IDEA, originally
PL 94-142, the Education for all Handicapped Children Act (EHA), passed shortly after
Section 504 in 1975. PL 94-142 provided funds to states to assist in the education
of the disabled, along with significant regulatory requirements. All states eventually
chose to accept this money and therefore are subject to IDEA's regulatory requirements.
Footnote
2 I have chosen not to address the issue of cochlear implants in this article due
to the complexity of the issue and the relative newness and rapidly changing nature
of these devices. Though there is much controversy surrounding these devices, there
is evidence that they can increase language development in deaf children. However,
more research is needed to determine whether these devices can, by themselves, substitute
for the development of language that can occur when deaf children are given access
to American Sign Language (ASL) from birth. For this reason, some cochlear implant
advocates recommend that ASL be taught to these children as well (Zwiebel, 1987).
Footnote
3 The IDEA mandates that educational decisions regarding disabled children be made
by an appropriate team of educators and the parent. This meeting results in an IEP
that delineates the child's program and services.
4 For the purpose of this article, I use the terms learning disability (LD) and dyslexia
interchangeably for the following reasons. First, though the population of students
with learning disabilities is diverse, a high percentage of children with learning
disabilities have marked reading problems. Second, much of the research on LD is
not categorized by type of LD. Finally, the way schools respond to dyslexia, in my
view, is similar to the way they respond to other types of LD.
Footnote
5 More than 11 percent of students age six to seventeen received special education
services during the 1998-1999 school year (U.S. Department of Education, 2000).
Footnote
6 The term community is used loosely here to include those who have disabilities,
parents of children with disabilities, and their advocates.
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AuthorAffiliation
THOMAS HEHIR
Harvard Graduate School of Education
Subject: Handicapped people; Children&youth; Special education
Publication title: Harvard Educational Review
Volume: 72
Issue: 1
Pages: 1-32
Number of pages: 32
Publication year: 2002
Publication date: Spring 2002
Year: 2002
Publisher: Harvard Educational Review
Place of publication: Cambridge
Country of publication: United States
Journal subject: Education
ISSN: 00178055
CODEN: HVERAP
Source type: Scholarly Journals
Language of publication: English
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Copyright: Copyright Harvard Educational Review Spring 2002
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