Labelling — Help or Hindrance?

Alan Challoner MA (Phil) MChS

Abstract

If labels appertaining to ability and disability are to be used for children and later as they
become adults then they should only be used if they are an advantage to the individual.

Preface

I would like to make it quite clear from the outset that the purpose of writing this paper is to
show how the homogenous labelling Learning Disabled can bring about confusion where
clarity should be in place and inexactitude where purposeful investigation should order
care and treatment for individuals who have fallen under this label.

We use labels to describe ourselves and others use labels to put people into groups that are
meaningful. So I started off as a ‘baby’ and then went on to be a ‘child’ or ‘boy’ before
becoming an ‘adolescent’ as well as a ‘school boy’. Later I became a ‘student’ and later
still a ‘meteorologist’. Shortly after that I became an ‘airman’, whilst completing my
national service. Once more, when I decided to change professions, I became a student
again, and so on.

There seems to be no problem with those sorts of labels but there is a degree of discomfort
if we start to acquire labels that distinguish us categorically from others in general society.
Thus we could become ‘arthritic’ or ‘disabled’; and the amount of disconcertion that we
feel depends upon how those labels are used.

Of course some labels are used because they identify people who need extra help so that
they will be able to get extra services; like benefits – for the unemployed or the poor who
do not have enough income to survive without financial support.

Some children are unfortunate in that they fail to develop mentally or physically in the way
that their more normal peers do. Often this means that they acquire a label to identify
what it is that reduces their capacity for thought or action.

When I was child in the 1930s, children who couldn’t keep up with the learning that the rest
of their class was finding manageable were labelled ‘slow’. This became slow learners and
later still if the problem didn’t improve, educationally subnormal. Eventually the use of IQ
assessment became fairly universally applied in order that there could be some orderly and
consistent basis for these labels of low ability. It was necessary to find out why the problem
existed in any particular child.

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Research in this area has been going on for many years and thus the description of the
disability has changed with time. The term general learning disability has now been
recommended in the UK to replace labels such as mental handicap or mental retardation
but it is referred to increasingly as intellectual disability. A child with a general intellectual
disability finds it more difficult to learn, understand and do things compared to other
children of the same age. The degree of disability can vary greatly. 1

The Royal College of Psychiatrists states its view as:

“General learning disability is different from specific learning difficulty which means that the
person has difficulties in one or two areas of their learning, but manages well in other areas
of their development. For example, a child can have a specific learning difficulty in
reading, writing or understanding what is said to them, but have no problem with learning
skills in other areas of life.

Causes include genetic factors, infection before birth, brain injury or damage at birth, brain
infections or brain damage after birth. Examples include Down's syndrome, Fragile X
syndrome and cerebral palsy. However, in many children with general learning disability,
the cause of the disability remains unknown.” 2

People with a brain injury may have difficulty controlling, coordinating and communicating
their thoughts and actions, but they may retain some of their intellectual abilities. However,
the intellectual abilities of a person with a brain injury are likely to be interfered with by the
resulting thought coordination and communication difficulties, which can make it difficult
for them to express themselves in a manner intelligible to others. This may give the
impression of a damaged intelligence, even though such may not necessarily be the case.

A general learning disability is not a mental illness. However, psychiatrists believe that
children with learning disability are more likely to develop mental health problems or have
additional developmental disorders, such as Autism Spectrum Disorders and Attention
Deficit Hyperactivity Disorder than other children. 3 This can lead to the prescribing of
psychotropic medication for such children but in my experience this is often over-kill and
may be used to assist carers who do not have the full competence to adapt to the needs
of children or even more especially when they become adults.

An acquired brain injury (ABI) is brain damage caused by events after birth, rather than as
part of a genetic or congenital disorder. It usually affects cognitive, physical, emotional,
social or independent functioning and can result from either traumatic brain injury or non-
traumatic injury such as stroke, infection or substance abuse. Most definitions of ABI exclude
neurodegenerative disorders.

Very early brain damage can be as a result of an accidental injury or impact to the skull
that is of sufficient force to cause damage to the brain. This sort of non-penetrating impact
damage tends to cause damage either to the part of the brain immediately behind the
point of impact and/or where the brain is forced against the skull on the opposite side. This
sort of injury tends to cause a localised injury and as such the consequences may be limited
to an impairment of the work that part of the brain does.

Where there is damage to the brain caused by convulsions that may be induced through
substances passing through the blood/brain barrier then the areas of damage can be
more extensive due to the sporadic pattern of distribution.

Challoner has written that, the brain consists of about 100 billion interconnected neurones.
There is a huge variation in the number of neurones that different people have. Each
neurone has a cell body out of which axons extend. Axons are like wires along which
electronic information flows. At the end of each axon, chemicals are released that excite
or inhibit the next neurone. In this way, all the neurones are interconnected. 4

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The two main chemicals released are glutamate, which excites neurones, and GABA,
which inhibits them. A substantial amount of inhibition is required; otherwise the brain would
be a mass of excitation all the time. Seizures are like an electrical storm, with a lot of
neurones firing and releasing substantial amounts of glutamate.

As far back as 1957 it was shown that at high enough concentrations, glutamate is toxic to
neurones. 5 There is evidence that prolonged seizures in convulsive status epilepticus may
lead to damage of nerve cells for this reason. 6 Blood pressure drops during a seizure. If
the seizure is prolonged and blood pressure remains low for longer, insufficient blood will
reach the brain. Blood transports oxygen and also glucose, which is the food for cells. If
seizures are prolonged, the brain will eventually be deprived of oxygen and the nerve cells
will start to die. In addition, a convulsion uses up glucose; therefore if insufficient blood
reaches the brain to provide enough glucose, this too can cause damage to nerve cells.
(Idem)

When a nerve cell dies it cannot be resuscitated. In the long-term other neurones may take
over some or all of the work of the dead neurones, but that will not guarantee that the loss
of the damaged neurones will be mitigated. The realisation that prolonged seizures can
damage the brain is not new. It was noted as far back as 1825 that long seizures seemed
to cause damage to the hippocampus, the part of the brain important for the formation of
memory. 7

In children some neurologic deficits, after head trauma, may not manifest for many years.
Frontal lobe functions, for example, develop relatively late in a child's growth, so that injury
to the frontal lobes may not become apparent until the child reaches adolescence as
higher level reasoning develops. Since the frontal lobes control our social interactions and
interpersonal skills, early childhood brain damage may not manifest until such frontal lobe
skills are called into play later in development. Likewise, injury to reading and writing
centres in the brain may not become apparent until the child reaches school age and
shows signs of delayed reading and writing skills. This of course is a variable which is
dependent on the age of the child when it is injured8

Taylor et al examined three hypotheses regarding the consequences of early brain

damage for academic achievement: First, early brain insults will have a negative impact on
achievement, even in children with normal intelligence. Second, underachievement in
these children will be at least partially independent of IQ (i.e., not fully accounted for by a
lowering of IQ within the average range). Third, normally intelligent children with histories of
brain insult will also manifest selective cognitive dysfunctions. Their findings suggest that
learning disabilities may have selective, brain-related cognitive antecedents; but they
challenge the practice of using IQ criteria for clinical diagnosis. 9

It is important for those who manage and work in Learning Disability Services to understand
that clients who may come their way and who have brain damage need a quite different
approach to the more usual client whose main focus of disability is low IQ. Many of those
who have brain damage do not lack intelligence per se but lack proper neural
connections due to the death of brain cells.

Indeed it is important, especially for the purposes of this paper, to consider — Who is
Learning Disabled? Siegel, LS, writes that it is possible to develop a simple, reasonable
classification system for learning disabilities, and to conduct assessments based on a
coherent and relevant set of achievement tests in which individuals who score below a cut-
off are considered learning disabled. 10

The definition of learning disabilities has been debated endlessly over the years with no
apparent resolution. The question of who is learning disabled is, obviously, one of the most
critical questions for the field. It is very important for those involved in research and clinical
practice and it is crucial for educational systems, especially those systems in which funding
is based on the number of individuals with learning disabilities. (Idem)

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Jon Westling writes 11, “If we err on the side of being too general and too inclusive in our
definitions of learning disability, we debase the idea altogether. The expansive and
undifferentiated definition of learning disablement which has become common in our
schools ensures that students with severe deficits do not get the attention they need;
students with less severe impairments are trained to the trellis of dependency on their
special status and the accommodations that are made to it; and everyone suffers from the
resulting pedagogical sclerosis. (pp. 6-7)

Learning disabilities per se are a … thing for which we do not have a very persuasive
definition. Much of the research in the field relies on standardized tests and identifies the
learning disabled as those individuals who in some subjects perform significantly below
average for their age cohort. There is an odour of tautology in that approach: How do we
know that a low score or even a series of low scores implies an underlying lack of ability and
not, for example, a lack of interest or motivation? (p.8 Inappropriate diagnoses of "learning
disability" wreak educational havoc from kindergarten to the university. Students who have
genuine learning disabilities, lumped together with sufferers of imaginary complaints, are
denied the education they deserve (p. 19).”

Siegel brings us face to face with the important issue — Who should not qualify as learning
disabled? The presence of certain exclusionary factors means that an individual will not
qualify as learning disabled.

The definition of learning disabilities assumes that:

(a) a learning disability is not the result of an inadequate education;
(b) the individual does not have any sensory deficits, such as hearing or visual
impairment;
(c) the individual does not have any serious neurological disorders that may
interfere with learning; and
(d) the individual does not have major social and/or emotional difficulties that might
interfere with learning. (Idem)

In Guckenberger, the defendant, Boston University, and the plaintiffs, Guckenberger et al.,
disagreed about these issues. Boston University argued that sufficient evidence had not
been presented for some students who claimed to be learning disabled; the plaintiffs
claimed that they did, in fact, have learning disabilities and that the evidence was
sufficient. Boston University claimed that the evaluations some students presented to
validate their learning disability were carelessly conducted by individuals who were not
qualified; the plaintiffs claimed that the evaluations were valid. Boston University claimed
that, in some cases, the assessments did not provide a valid rationale for or evidence to
justify the accommodations requested (e.g., increased time to take exams, use of a note
taker, substitution of another course for a foreign language or mathematics required
course); the plaintiffs claimed that the accommodations were necessary for students with
learning disabilities and that evidence had been provided for the significance of these
accommodations. (Idem)

It will be of interest to those who wish to know the process and the outcome of the case to
check the link above. The Order of Judgment included the following:

“The Court orders Boston University to cease and desist implementing its current policy of
requiring that students with learning disorders (not ADD or ADHD) who have current
valuations by trained professionals with masters degrees and sufficient experience be
completely retested by professionals who have medical degrees, or doctorate degrees, or
licensed clinical psychologists in order to be eligible for reasonable accommodations.”

There is a neuropsychological approach to screening for learning disabilities and this uses
the Halstead-Reitan Neuropsychological Test Battery. Davis et al used two of the tests from

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this battery to discriminate between learning-disabled and normal children. These were the
Trail Making Test (TMT) 12 and the Tactual Performance Test (TPT)13.

Twenty children aged 9 to 14 years who recently had been classified as learning disabled
and 20 matched controls were administered individually the TPT, TMT, and two
experimental forms of the TMT (parts X and Y). The data from the two groups were
analyzed with a discriminant analysis. An overall accuracy rate of 82.5% was obtained
when the measures were used to predict the classification status of individual children. A
stepwise discriminant analysis procedure revealed an experimental form of the TMT (part X),
Tactual Performance Test total time, and Tactual Performance Test localization to be the
most sensitive measures. 14

The Halstead-Reitan is typically used to evaluate individuals with suspected brain damage.
The battery also provides useful information regarding the cause of damage (for example,
closed head injury, alcohol abuse, Alzheimer's disorder, stroke ), which part of the brain was
damaged, whether the damage occurred during childhood development, and whether
the damage is getting worse, staying the same, or getting better. Information regarding
the severity of impairment and areas of personal strengths can be used to develop plans
for rehabilitation or care. 15

Obrzut et al performed some of the same tests and others on twenty-three learning
disabled children and they were compared to those of a matched population of normal
children in the 9-1 to 13-1 age range. All children were administered the Wechsler
Intelligence Scale for Children-Revised (WISC-R), a dichotic listening task16 involving both
free and directed recall conditions; a handedness inventory; the Tactile Performance Test
and the Category Test from the Halstead-Reitan Neuropsychological Test Battery. A
multivariate analysis of variance resulted in a significant separation between groups (p less
than .001) using these procedures.

A stepwise discriminant function analysis revealed that both of the directed dichotic tasks
contributed nearly all of 13 measures to the significant group separation. In addition, other
cognitive tasks found to discriminate normal from learning disabled children include
general verbal processes, concept formation, and tactile memory.

These findings suggest that the directed dichotic listening procedure and the WISC-R
Verbal IQ measure are reasonably valuable clinical tools in the classification of learning
disabilities. 17

Selz et al found that when the performance of 75 brain-damaged, learning-disabled, and

normal children aged 9 to 14 years was compared on 13 neuropsychological test measures
and these were analysed using the analysis of variance, supplemented by t-tests, they
indicated a significant difference beyond the .01 level on 11 measures and beyond the .05
level on one measure.

A discriminant analysis was based on weightings of the 13 measures and yielded 80 per
cent correct classification of subjects; a finding in agreement with the outcome of the
multivariate analysis of variance.

The results indicated that these psychological measures were individually sensitive to
differences among the three categories of subjects and, as a group, were capable of
classifying children at a level far exceeding chance. It would appear that
neuropsychological variables (brain-sensitive tests) may account for much of the
uniqueness in many children with learning disabilities. 18

The British Institute of Learning Disabilities in its factsheet infers that learning disability is a
label which is convenient for certain purposes, but people with learning disabilities are
always people first. 19 It goes on to suggest that there are different ways of defining and
classifying learning disability and all of these are open to some interpretation. It also offers
the view that support for people with learning disabilities has moved away from the

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medical model to a social model based on inclusion and integration, but goes on to tell us
that the label Learning Disability is convenient in discussion and for planning services.

I would suggest that there is a danger in adopting some of these approaches. Moving
away from the medical model for all deters people from looking for specific organic
problems that may well underlie some conditions and so lead to the homogeneity that I
have mentioned above. Also that leads to a possible lack of appropriateness in discussion
and for planning services where a person’s specific organic problems can get lost in the
need for a generalised service that will now be increasingly under the stresses of reduced
funding.

The use of the label Learning Disability may be of reasonable assistance for those who have
an IQ of around 70 but to use it indiscriminately for those with an IQ of 50 or less may not be
doing them justice if it prevents a proper understanding of the reasons for this level of
assessment. Indeed it could well be an opportune time create a separate group of persons
to include those who are clearly brain damaged or who have other organic conditions that
have interfered with their development and later education. This has already been done
for those who have a specific diagnosis such as autism. To subsume autistic individuals
under the umbrella label of Learning Disabled and ignore their medical/neurological
conditions would be an affront and clearly wrong.

There is a world-wide disparity in the meaning of the label, Learning Disabled. In the USA for
instance:

“Researchers think that learning disabilities are caused by differences in how a person's
brain works and how it processes information. Children with learning disabilities are not
"dumb" or "lazy.” In fact, they usually have average or above average intelligence. Their
brains just process information differently.” 20 Clearly this is not the way the label is used in
the UK.

Cliff Poetz of Minnesota, now 62 years old, went to Washington 41 years ago and told
lawmakers they shouldn't use the term "mentally retarded" to describe him and others with
intellectual disabilities. Now, American States have begun removing "mentally retarded"
from departments and regulations, the latest being New York and Rhode Island. In
November 2010, US Congress stripped the words "mentally retarded" from most federal,
health, education and labour statutes, and replaced it with an "individual with an
intellectual disability." 21

Already, it should be clear how inappropriate it can be to gather together a large number
of people who may have differences in the way their brains function inadvertently and put
them under the umbrella, Learning Disabled. This can bring about a lack of proper
understanding and care for those who were brain damaged after birth, especially those
who were damaged in the early months of their life.

Osterholm and Nash suggest that the confusion and conflict surrounding definition,
diagnosis, and treatment of learning disabilities is well documented and that debate over
definition is common and surprisingly heated. They write that, “Learning disabilities manifest
in diverse ways, making diagnosis difficult. Lacking associated physical signs or symptoms,
learning disabilities comprise an invisible disability. As a result, students so labelled are
frequently considered simply lacking in motivation or commitment.” 22

Ong-Dean points out that society may view invisible disabilities as illegitimate excuses for
failure to conform to achievement standards and other expectations. Alternately, the
Learning Disability diagnosis is sometimes misconstrued by laypersons as a form of mental
retardation, with myriad misconceptions deriving from this error. Labelled students, their co-
learners, and teachers often experience considerable frustration in negotiating the legal,
ethical, educational, and social mazes that learning disabilities present. 23

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Hebding & Glick believe that when ambiguity and the attendant professional
disagreement regarding a disorder are ongoing, the question of whether the designation
should be used at all inevitably arises. Does such a diagnosis hinder more than help those
so labelled? Labelling theory, a sociological model, proposes that labelling of individuals as
“different” in the negative connotation of the word creates a potentially distorted reality for
those who bear the label, as well as for their teachers, parents, and peers. 24 Labelling
theory further predicts that once an individual is labelled, “the social group seems to assign
to that person a new identity and a new role, a new set of expectations. The social group
then responds to the individual according to those expectations, thus reinforcing the label
and affecting all future interactions”. (Idem)

They write that the debate regarding the potentially negative outcomes of being labelled
learning disabled as opposed to possible benefits derived is ongoing. As Sack-Min notes
however, applying a diagnostic label to an individual, “Is a profound decision that affects
the rest of his or her educational career and life”. 25 Hebding & Glick believe that
continued exploration of the clarity and utility of the label itself is warranted. (Idem)

Parley tells us the notion that negative labelling leads to stigmatisation resulting in
marginalisation which in turn attracts additional negative labels is a circular argument and
it is difficult to consider each in complete isolation of the others. She describes People First
as an organisation concerned with self advocacy and reminds us that one of its stated aims
is ‘To work towards doing away with labels which affect our lives in a bad way’. 26

People First, which is run and controlled by people with learning disabilities, may fail to
capture the important messages of people who have profound and multiple disabilities
who do not use conventional methods to communicate their views. Nevertheless as a self
advocacy group they offer important messages on labelling and its effects:
• We have learning difficulties
• In the past we used to be called labels like mentally handicapped, mentally
retarded, intellectually handicapped or mentally subnormal
• We didn’t like these labels as they kept us down. We choose to use ‘learning
difficulties’ ourselves. It is a label which doesn’t hurt us as much as those above
• Jars should be labelled not people! (Parley, idem)

However, those people who can make such rational arguments are clearly reasonably
intelligent and surely must have IQs above 70. If they are part of a Learning Disability
Service then the question needs to be asked — in what sense are they learning disabled.
Are they disabled in a way that has already given them another label such as dyslexic or
Asperger Syndrome?

Parley interviewed several people in what she called Case Studies. [Each informant was
selected for this study because they supported people with learning disabilities including
those who might fit more than one care group such as learning disability or older people.]
One of these was June. At the time of the interview June declared she had 16 years of
experience within the care sector. She had broad experience within care and had started
out in a different branch of nursing before transferring to the learning disability branch. She
had experience of both residential care and of care management. Her early experience
of residential services was during a transitional period when people were moving out of the
long stay institutions to homes in the community.

On the issue of labelling June explained that Local Authority staff use the term learning
disability to electronically record the care. Yet she conceded that this was at variance with
the organisation’s desire to provide inclusive services for all, avoiding labelling but in
practice she felt that labelling could not be avoided.

Thus different terminology is used in private for administrative purposes, defining people in a
way that the organisation shies away from publicly with the more generic-labelled service

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user. Hence, although as a discipline, social workers prefer not to label people, to make
sense of the specialist nature of the learning disability service, they find it necessary.
(Parley, idem)

In putting dividing lines between the levels of learning disability at a notional level, it should
be stressed that this is essentially an administrative guidance tool. Throughout the whole
range of intellectual ability many intellectually disabled people will have 'islets' of
substantial ability, but other areas may well be very low. The groupings therefore will be
seen as artificial, and because in reality those who care for such persons will make
assessments at an individual level, there may be good cause to phase out the system of IQ
assessments as a means of labelling people. If such assessments have a place they ought
to be used as a means of gaining a better understanding of the individuals' needs in terms
of an educational curriculum and social welfare.

There are many levels of ability amongst those who are labelled learning disabled. Some
are able enough and aware enough to be able to go some way towards various aspects
of self-determination and even to discuss, contemplate and decide what sort of label they
should have if any. 27

The Kirklees User Involvement Network is a network of people and groups of people who
have the label of learning difficulty. It has a specific remit with respect to consultation and
as such encourages and supports Network members to be involved in the running and
management of the Network. The Network aims to ensure that people who have the label
of learning difficulty have the opportunity to participate in the development, planning,
commissioning, service delivery and evaluation of health and social care services. The
Network aims to support people throughout this process. (Idem)

The author writes that, “The medical professions use the term profound and multiple
learning disabilities to refer to this heterogeneous group of people. This term is used by the
world health organisation and is defined using normative testing criteria and a list of the
persons perceived limitations and impairments. This use of terminology is negative and
individualistic. Through stressing only the perceived limitations that the person has it
disregards the person’s abilities and the fact that society is the main oppressing force, not
the body.”

This is a legitimate view but one must question the level of disability that is associated with
those who are conscious of the labels that are applied to them and who can discuss
whether they are the right ones. This reinforces my view that the label Learning Disability as
it is used in Learning Disability Services is a nonsense as it no more useful in understanding
those so labelled than is that of ‘immigrant’ for those who cross a border.

The anonymous author is attacking the label Learning Disability apparently because he
feels it denigrates those with whom he is familiar who are so labelled; whilst I, on the other
hand, am complaining from the other end of the spectrum because some people who are
labelled as having a Learning Disability are comprehensibly disabled (by as much as 80%)
but are lumped together with those for whom the author speaks.

He uses the term ‘people labelled as having a learning difficulty who have high support
needs’, because he feels that this label best demonstrates that the barriers to the person
participating in society are a lack of a supportive, inclusive society and not individual
limitation. He goes on to write that, “For clarity I will further elaborate that the term high
support needs refers to people who may not use words or conventional communication
methods to communicate. They may have physical and sensory impairments in addition to
a label of learning difficulty. They may have additional labels such as challenging
behaviour or autism.” This seems to give reason to abandon labels for groups of people
who do not have a medical diagnosis.

He writes further that, “Studies of the experiences of people in long stay institutions
suggested people who used limited or no verbal communication were generally

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considered the least ‘intellectually’ able, and received less support than people who could
speak up for themselves (e.g. Tilstone et al., 1998)” 28.

As a result people labelled as having a learning difficulty and high support needs often led
lives described variously as unfulfilled, lonely or bored. People with this label are amongst
the last people to be discharged from long stay institutions and on discharge are given the
least choice over where they live, who they live with, and the manner of support they
receive.” (Anonymous, idem) This continues to show that the Learning Disability label is too
homogenous to be of help to the individual.

According to a BBC report, some doctors and nurses believe people with learning
disabilities receive worse healthcare than the rest of the population; this is according to the
charity Mencap. Mencap found almost half of doctors and a third of nurses think this is the
case from a poll of 1,084. It is urging health trusts to sign a charter which sets out the rights
of people with learning disabilities and the responsibilities of hospitals. The government says
that removing inequalities is a priority. "Healthcare professionals have recognised they
need more support to get it right when treating people with a learning disability," said
Mencap Chief Executive, Mark Goldring. 29

A study by Norman & Zigmond looked at the intake placement data from the files of 1,966
students labelled and served as learning disabled in Child Service Demonstration Centres
(CSDC) in 22 US States. The information included achievement and IQ data, age, and
grade. The mean age was 11.83 years and the mean IQ was 92.5. [My underlining] There
appeared to be a lack of consistency in the characteristics of students who were labelled
learning disabled. Younger students were much less severely underachieving than were
older students. Significant differences were found among CSDCs in mean IQ and in the
percentage of students meeting an arbitrary criterion of severe discrepancy. In addition,
54% of the CSDCs included students whose IQs were at or below 69. The results seem to
indicate that a heterogeneous, ill-defined population of students is being labelled as
learning disabled. 30

It is accepted now, as described by Howells31 that environmental problems can slow the
development of the young child and premature birth, difficult delivery and low Apgar
scores32 may compound the problem. Similarly a child who is deprived of learning
opportunities will not develop to its full potential. Inadequate parenting resulting from
separation from the mother, either physically or emotionally, may also affect the child’s
mental ability.

A report by Pressinger followed a study of the environmental circumstances that can

damage the developing brain. The project involved extensive research of published peer
reviewed medical journal articles which have shown environmental and chemical exposure
factors can cause damage to the delicate brain growth processes in the unborn child
during pregnancy, thereby demonstrating potential to cause Learning Disabilities, Attention
Deficit Disorder, Hyperactivity and other child behaviour anomalies. 33

The human brain begins growing in the 4th week of pregnancy at a rate of over 4,000 cells
per second. Unlike an adult, the foetus does not have a functional blood brain barrier to
protect itself from toxic insult. This lack of natural defence allows chemicals into the foetal
brain with potential to cause serious harm and disruption in this delicate brain growth
process. (Pressinger, idem)

Scientists and researchers have now confirmed in a number of research studies that
children with learning disabilities and attention deficit disorder exhibit at least one of several
types of damage to the brain structure. This can appear as either one or more of the
following:
• Fewer numbers of brain cells in important areas of the brain
• Smaller size of brain cells

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• Brain cells that migrated to the wrong part of the brain (called dysplasia)
• Lower than normal blood flow to specific areas of the brain
• Brain cells that metabolize glucose (the brain's primary fuel) at lower than normal
levels

This research provides strong evidence to support a biological explanation for the large
increases being observed nationally in children with attention deficit disorders , learning
disabilities and other behaviour disorders such as hyperactivity, aggressive disorders and
emotional handicaps. (Pressinger, idem)

An increasing number of neurotoxic compounds are being identified in today's modern

society (not present 30-50 years ago) which can weaken or damage this brain
development process. The effects of these chemical exposures can then become evident
in later years as learning disabilities, attention deficit disorders, mental retardation or
personality and behaviour difficulties such as shyness, hyperactivity, aggression or even
violent tendencies and lack of conscience. (Pressinger, idem)

There is also increased documentation of research showing exposure of the father to

various chemical compounds during the 65 days prior to conception (the time required to
complete sperm development in the testicles) can increase the risk for various birth defects
and symptoms common in learning disability students. The names given to the science
which studies these phenomena are Pregnancy Neurotoxicology, Developmental
Neurotoxicology and Behavioural Toxicology. (Pressinger idem)

Labels have always been used to describe or categorize people but for people labelled as
having an intellectual disability (ID), such labels are especially important. Intelligence is
both genetically and environmentally determined. Children born to parents with ID are at
increased risk of a range of developmental disabilities and this may be due entirely to
environmental circumstances. However, clear genetic transmission of ID is unusual. When
this occurs it usually involves; chromosomal abnormalities, genetic metabolic disorders or
genetic neurologic disorders. 34

Although advances in genetics, such as chromosomal microarray analysis, have increased

the likelihood of identifying the cause of an ID, a specific cause cannot be identified in 60%
to 80% of cases. A cause is most likely to be identified in severe cases. Deficits in language
and personal-social skills may be due to emotional problems, environmental deprivation,
learning disorders, or deafness rather than ID. (Idem)

Despite the transition that has brought patients out of the old mental handicap hospitals
into what was supposed to be the better, kinder, rehabilitation to be found in community
living situations; the old psychiatric control still exists for many of these people. It still imposes
medication in the way it was imposed in the hospitals and for the same reasons.

These are the people for whom the local authorities now run their Learning Disability
Services and mental health issues are still very much the order of the day because these ex-
patients have not had their rehabilitation funding continued as a ring-fenced award.
Therefore although social services departments are still receiving this money it does not
have to be used for the individual’s benefit. History tells us that this money has been used in
part to support other areas of care that are under-funded.

This reduced funding has meant that many of the community living schemes that were
staffed by dedicated carers who came to know and support the ex-patients very well are
now staffed by agencies and the level of support can easily fall to unacceptable
standards. This reduces the well-being of each person so cared for and makes it more likely
that they will require the psychiatric input that they had hopefully left behind. Psychology
services are so thin on the ground that their use in these circumstances is unfortunately rare.

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The coalition government has now published its new long term mental health strategy for
England. 35 Its six main “shared objectives” are:
• more people will have good mental health;
• more people with mental health problems will recover;
• more people with mental health problems will have good physical health;
• More people will have a positive experience of care and support
• Fewer people will suffer avoidable harm
• Fewer people will experience stigma and discrimination

In terms of care and support, wherever it takes place, it should offer access to timely,
evidence-based interventions and approaches that give people the greatest choice and
control over their own lives, in the least restrictive environment and should ensure that
people’s human rights are protected. It also insists that fewer people will suffer avoidable
harm. This should allow for people receiving care and support having confidence that the
services they use are of the highest quality and at least as safe as any other public service.
(Idem)

The inscrutable objective that is also included is that fewer people will experience stigma
and discrimination and that public understanding of mental health will improve and, as a
result, negative attitudes and behaviours to people with mental health problems will
decrease. Quite how this is to be achieved it does not say. However, if some notice is
taken with regard to labelling along with some of the other issues discussed here, then
maybe some progress can be made in those directions.

It does add that, “The Cabinet Sub-Committee on Public Health will oversee all the strands
of work on mental health undertaken by government departments in order to raise the
profile of mental health and to ensure appropriate action is taken, to help implement the
strategy.” (Idem)

The second of the Valuing People Now Delivery Plans marks progress over the last year and
sets out actions and responsibilities that will be taken in 2010-2011 to support the
implementation of Valuing People Now.

Making it happen for everyone: the Delivery Plan for 2010- 2011 therefore, continues to
focus on the needs of those groups identified in Valuing People Now as the least likely to be
heard and most often excluded. They are:
• People with more complex needs;
• People from black and minority ethnic communities;
• People with autistic spectrum conditions; and
• Offenders in custody and the community. 36

These groups of people will not get the best services unless they are served by specific
plans for each individual disability or each group that is considered to be poorly served.

That these groups of people are subsumed within the label of Learning Disabled, presents
further evidence that this umbrella term is not at all helpful. In case there is any confusion
about what the government is intending then there is clarity to be found; “a key priority
under the Valuing People Now Delivery Plan 2010-11 is to improve the quality and
productivity of services and to make best use of existing resources in Learning Disability
services.” (Idem)

Glen writes, “The learning disabled child is different things to different people. Any
definition of the learning disabled child poses as many questions as it answers. However,
the label, learning disabled child, usually includes children who have difficulty in

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understanding or in using spoken or written language. Assorted labels or definitions have
been used to describe these children. These include:
Dyslexia
Educationally handicapped
Emotionally disturbed
Learning disability
Minimal brain dysfunction
Neurological dysfunction
Organic brain syndrome
Perceptually handicapped
Specific learning disability
Specific reading disability

Clearly there is a different approach here than that of Siegel. (See above – p. 4)

Apparently the selection of a given label is more a matter of professional bias than of
diagnostic description. Sometimes the label learning disabled child is used for children who
have not been assigned other labels.” 37

When that list is examined one can only wonder what advantage there is from them all
being collected together under the label Learning Disabled. There will also be children
who are brain damaged who will be given that label but who might not have difficulty in
understanding or in using spoken or written language.

Analysis, Discussion and Conclusion

Amongst the paragraphs above you will have seen the phrase People First. This will be
familiar to most who are reading this paper. People First has been adopted as a title for a
UK-based organisation run by and for people with learning difficulties to raise awareness of,
and campaign for the rights of, their learning difficulties and to support self advocacy
groups across the country.

I have suggested that the sort of people who are aware to this extent and who are able to
understand not only what is wrong with their treatment (educationally, socially and
medically) but how to correct it are capable of representing their interests without me
campaigning for them. Of course I recognise that the organisation may also include those
who are completely able but who want to support and help those for whom they may
speak and act.

So, having outlined some of the problems of ‘labels’ for people who have disabilities I want
to concentrate the discussion and look at the situation for those who are not aware in the
sense that those who are represented by People First are aware.

To do so I want to suggest that where things start to go wrong is at the beginning. Most
people who become known by the homogenous label learning disabled will have begun
to develop the propensities for their condition at an early age (some pre-natally). It is vital
therefore that we do not wait until they are people but act as soon as they become a
person. Before we go down the road of examining that idea perhaps we should just pause
and remind ourselves what personhood is.

Philosophy may cause us some concern here because it applies the term personhood to
those who are regarded as self-consciousness and capable of certain kinds of higher-level

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thought — for example individuals who have the power to reflect upon and choose their
actions.

In philosophy, concepts of personhood often consist of features which typically set human
beings apart from non-humans, e.g. mentally and/or physically, or as those features of their
own identity which are of special concern or importance to human beings.

For the purposes of understanding how those with perceived problems of intelligence,
learning, and medical problems that make them less than autonomous I am going to state
my belief that if we begin to deny personhood to other human beings we can just as easily
justify their killing, or even merely their mistreatment.

The beginning of human personhood is a concept long debated by religion and

philosophy. In contemporary global thought, once humans are born, personhood is
considered automatic and exists for them. However, personhood could also extend to late
foetuses and neonates, dependent on what level of thought is required.

However, to take that step we must also consider if personhood requires self-awareness.
Self-awareness is an awareness of the self as separate from the thoughts that are occurring
at any point in time — in other words, self-awareness is the awareness that one exists as an
individual being.

Self-awareness gives one the option or choice to choose thoughts that are wanted to be
thought rather than simply thinking the thoughts that are stimulated from the accumulative
events leading up to the circumstances of the moment.

This is not self-consciousness which is defined as an acute sense of self-awareness. That is a

preoccupation with oneself at any given point in time. This is often a feeling rather than a
situation of self-analysis and frequently appertains when one considers how others are
seeing us and how we feel as a result.

What may be very difficult for a third person to know or to understand is to what extent self-
awareness is impaired in another. We may not know whether this has arisen because of the
failing of the affective system to accommodate such feelings or whether they have been
‘controlled’ by instant events so that the ability is lost for a period of time, e.g. shyness or
even paranoia.

Now this is where we come to the difficult bit. It can well be that a brain-damaged or other
seriously brain-impaired person has self-awareness but has not got the ability to easily show
that is the case. So we have to make adjustments and we begin by assessing what they
can make us aware of. Are they aware of hot and cold? Do they protect themselves from
some harms? Can they state what they prefer if given a choice between say two or three
items to eat? Can they object to things happening to them that they don’t like? We may
have to invent possibilities for them along these lines so that we can know how best to
support them.

It is important when assessing such people that we do not let ourselves be ordered only by
the usual paraphernalia of psychological assessment. We do need to set out the
parameters of self-awareness for each individual and plan their care accordingly. If we
apply a label to them such as brain-damaged then we do not give them another label
that will remove them from their special category for administrative convenience.

If labels appertaining to ability and disability are to be used for children and later as they
become adults then they should only be used if they are an advantage to the individual. It
will be seen from the foregoing research and reports that there are many levels of ability
and also many tests that can help to determine not only if a disability is present but also in
most cases its cause.

Page 13 of 17
It is wrong to take a linear view that often starts in education that if a child falls behind in its
learning then it is assumed to be learning disabled unless there has already been some
investigation as a result of disease or accident. Once a child is placed in the learning
disability box with an expectation, often reduced to a hope, that he will be assessed later
when it is administratively convenient then it is so easy to allow the child to not get beyond
a simple IQ test and perhaps a basic Weschler.

It is often the case that psychologists who test children at this level insist that the child is not
accompanied and this leaves it desperately trying to make sense of what is going on
without the benefit of an intermediary who can help with language and confidence. This is
particularly important if the child has been brain damaged; for, unless the full extent of the
damage is known, the psychologist and the teachers (and the parents) will not know what
is a simple lack of ability and what is organic.

The Learning Disability Service easily accommodates all sorts of child and adult adversity
without there having been a full assessment in order to understand the cause of the
person’s problem. This is administrative laziness and it is easily followed by frustration for the
child that will almost inevitably bring about behavioural problems. If the disability has been
caused by environmental inadequacies in the family then these will also bring additional
behavioural problems and the result is often family despair that is answered by the
psychiatric service attempting to ease matters by introducing psychotropic medication.

What these children need as well as full and adequate assessment is that their problems are
dealt with through educational/clinical psychology rather than psychiatry. Using
medication to try and solve the problems is rarely in the best interests of the child and it can
be a renunciation of the ‘first do no harm’ principle. Unless this is done the child and later
the adult can end up with inappropriate labels and these will be accepted without
question by the succession of medical and social helpers.

Thus I believe that it is rational to consider that anyone who is not self-aware in the way it is
described above will be so handicapped that they will probably not be sufficiently able to
be considered as a candidate for social inclusion and will more than likely be hospitalised.

Finally, to return to the title of this paper — Labels — Help or Hindrance. For Social Services
Departments and especially their Learning Disability Services they are clearly a help. They
allow for clients to be lumped together in one box for the sake of administrative
convenience. Once there, they have to share the resources available regardless of their
need. Their care can be allocated to carers (usually these days through an agency) where
some of the most needy and demanding clients will suffer the dismay and indignity of being
looked after by those who, willing though they might be, will not have the experience and
the training that is required by the specific individual being cared for, in order to properly to
deal with their condition. They should take note of Siegel’s summary of those who should
not be included within the label, Learning Disabled. (See p. 4)

For those who are truly disabled by conditions such as brain damage, they can suffer
enormously because they are unable to understand the policy, the politics or the
management scheme and to compound this lack they do not know how to express their
objections except through their behaviour and some of this is an instinctive, physiological
process. Of course that behaviour is immediately seized upon to infer how intractable is
their condition and usually it is subdued by medication or increased medication.

For the medical profession, the label may be a help in the very early stages of triage and
diagnosis. After that they are no use at all unless the label identifies a condition that can
be understood and used to benefit the patient. Beyond that the label Learning Disabled is
about as much use as that on a stack of wine that has had its bottle labels removed and is
just collectively noted as being wine.

Page 14 of 17
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