Radical Psychology
Volume Seven, 2008
“
‘Are You Sure, Sweetheart, That You Want to Be Well?’ ”: An Exploration
Of The Neurodiversity Movement
Kathyrn Boundy [*]
During a discussion of the embodiment of cultural knowledge and the
ways in which (forced) assimilation can be experienced as a violation
enacted in the deepest level of self, Jacqui Alexander quotes the
opening scene of Toni Cade Bambara’s
The
Salt Eaters, in which one character asks another, ‘Are you sure,
sweetheart, that you want to be well?’ (as cited in
Alexander, 2005,
p.277). This question gets at the heart of many of the issues
with which the Neurodiversity movement and the people who identify
themselves as part of the communities from which this movement stems
are concerned. What does it mean to be ‘well’? Who is it
that gets to decide if one is well or not? By what criterion is
this decision made? Is it the subjective experience of the
patient which determines wellness? The opinion of the medical
community? The extent to which a person is able to blend
effectively into the social and economic world, regardless of the
possible cost to the person doing the blending? In a world
in which emotional, perceptual, intellectual and interpersonal
experience can come in many forms and configurations, who is it that
must accommodate whom and to what extent? To what extent do the
so-called ‘neurotypical’ have the right to enforce their social and
behavioral rules and expectations on those whose ways of experiencing
themselves and the world differs from the accepted norm?
While the actual term ‘neurodiversity’ was not seen in print until
1997, The neurodiversity movement is often thought to have begun with a
speech made by Jim Sinclair at the 1993 International Conference on
Autism at Toronto, called ‘Don’t Mourn for Us.’ In this speech,
Sinclair asked the parents of autistic children to try to understand
that ‘Autism is a way of being. It is pervasive; it colors every
experience, every sensation, perception, thought, emotion and
encounter. It is not possible to separate the person from the
autism’ (
Sinclair, 1993). He further
asks them to understand that
what
it is they feel they have lost, when they speak of ‘losing a child’ to
autism, is not the actual child him/herself but the idea they had of
what that child would be like, what kind of relationship and
experiences they would have with the child. The parents of an
autistic child, he says, have not lost a child, but an illusion.
They must mourn the passing of the illusion and then accept the child
on his/her own terms (
Sinclair, 1993).
Jim Sinclair is himself autistic and his speech stood as a
representative of the very beginnings of a self-advocacy movement for
social acceptance and self determination that was developing within the
autistic community in the mid-nineties. While there had always
been autistic advocacy groups, it was not until recently that these
groups were led by members of the autistic community themselves.
Increasing use and availability of internet technology has played a key
role in allowing autistic people, [
1] who would
otherwise be unable
to meet, speak, and form a cohesive movement to gather and make their
views, wishes and ways of perceiving themselves and their differences
known.
Online Communities: Diversity Friendly
Alternative forms of Activist Networking.
Internet communication -- email, instant messaging, chat rooms -- slows
down communication and dispels with body language and the need to
interpret facial expressions, all things which make it a particularly
friendly form of communication for people on the autistic
spectrum. Many neurodiverse people, regardless of the form their
neurodiversity takes, are more comfortable socializing on the web,
because it allows the individual to have a much more thorough degree of
control over the experience of interacting with other people. Susanne
Antonetta, who is bipolar and the author of
A Mind Apart: Travels in a Neurodiverse
World, writes that: ‘For many of us, the difficulty of finding
other people who share our mind ways and communication styles and the
discomfort of having to provide immediate answers or, perhaps, account
for bodies and eye contact in conversation makes the Web a preferred
way to speak’ (
2005, p.7).
Socializing on the Web allows one to communicate with an international
community of people while remaining at home in an environment one can
control, which eliminates or reduces the possibility of getting
over-stimulated by an unfamiliar or less controllable public
environment. It allows one to phrase and rephrase one’s thoughts
before ‘sending’ them and to take all the time one needs before
responding to another person. It eliminates the need to control
one’s outward behavior -- one can rock, pace, fidget, laugh, cry, talk
out loud to oneself, and/or act in any number of other ways which might
be seen as inappropriate in the public world without fear of
exposure. On the internet, no one knows what you are doing and/or
feeling unless you tell them. A recent article in the New
Scientist titled ‘Web Removes Social Barriers for those with Autism’
quotes Camille Clark, a woman with Asperger’s syndrome who publishes a
blog called Autism Diva, who says: “‘Anyone may have interacted with an
autistic person by email or internet bulletin board and not known that
the second person is autistic. That makes a big difference to the
autistic person”’ (as cited in
Biever, 2007).
While autistic and other neurodiverse people have been making
widespread use of internet listservs, chatrooms, bulletin boards and
other forums of online expression since the nineties, the internet
program
Second Life has
recently emerged as one of the primary hubs of socialization for these
groups (
Biever, 2007). The
cultivation of
Second Life as
a gathering place
for autistics and other neurodiverse groups began in 2005 when a
Harvard researcher in neurology created a “private island within
Second Life called Brigadoon,
designed for people with autism” (
Biever, 2007,
p. 26). His hope
was that people would use the island as a consequence free place in
which to develop and practice social skills. The cartoonish
avatars used by participants in
Second
Life make exaggerated facial expressions which are easy to read
and break down for analysis, thus making it a good forum for learning
this and other types of ‘body’ language. Soon, however, people
began leaving the protective space of Brigadoon and heading out into
the public world of
Second Life.
Two women who objected to the therapeutic intentions of Brigadoon,
Amanda Baggs and Laura Tisoncik, formed what they call the ‘autistic
liberation front’ within
Second Life,
which has since become a major forum for neurodiversity consciousness
raising and activism where ‘autistic people can “organize, educate and
advocate for ourselves”’ (
Biever, 2007,
p. 26 ).
Also notable is the website titled the ‘Institute for the Study of the
Neurotypical’, a satirical website founded by neurodiversity activist
Muskie in 1998 which pokes fun at the behavioral and mental
proclivities of so-called normal people. This website examines
the symptoms, prognosis, social, individual and cultural implications
of ‘neurotypical syndrome’, a ‘neurobiological disorder characterized
by preoccupation with social concerns, delusions of superiority, and
obsession with conformity’ and subdivided into ‘Staff Personality
Disorder’, ‘Normal Personality Disorder’, ‘Pseudosimultaneous Awareness
Disorder’ and ‘Psychiatry Disorder’ (Muskie, 2002). At this
website, one can take a test to see if one might be a victim of
‘neurotypical syndrome’ and find advice on coping with, as well as
sympathy for having to cope with, those afflicted with normality.
Numerous satirical ‘academic’ and ‘diagnostic’ papers regarding
normality disorders are published on the site and ‘persons on the
autistic spectrum and NT supporters are invited to submit papers to the
Institute, and to share your observations in “Current Research” (the
guestbook)’ (
Muskie, 2002).
Such forums are important for building a base network of support for
consciousness raising and activism within neurodiverse communities, and
they work to counter negative self images arising out of immersion in
the standards, preconceptions and constraints of neurotypical culture
and social institutions. For many, discovering these alternative
communities provides the first positive, self affirming portrayal of
their own minds that they have ever encountered and become the first
place in which they are encouraged to value themselves and to decide
what they want and how they want to live and then take steps towards
making those desires real. Antonetta, discussing her discovery of
the online world of neurodiversity activism, writes of her:
astonishment of the world I’ve grown
into . . . of whole cybercommunities coming together for the purpose of
defining who we are and what we want from medical treatment. It
is a brave new world . . . a world that offers enough wonder, in itself
and in the discussions it creates- of gifts and challenges, of all that
comes from neurodiversity- to make me want to sit down with it, and
consider it from as many places as possible . . . to think hard about
this defining aspect of my life, and the lives of others around me
(
2005, p.12).
Beyond
Autism: Expanding the Boundaries of the Neurodiverse Community
Currently, the concept of neurodiversity has been expanded beyond the
autistic community to include people who have been diagnosed with
attention deficit hyperactivity disorder, bipolar disorder, dyslexia,
Tourette’s syndrome and numerous other mental, intellectual and
emotional differences. Activists from within the
neurodiversity movement take the stance that all these differences
should be seen as part of the spectrum of diverse human experiences and
valued as such. They believe that neurodiverse individuals
should not be forced to conform to the behavioral standards of
‘neurotypicals’ and that they should not be coerced through blatant or
subtle means into taking unwanted prescription medications to treat
their conditions. They believe that much of the pain and
difficulty autistics and other neurodiverse people endure is due to the
pressure to conform to intolerant and restrictive social norms,
institutions and habits -- not due to the existence of neurological
differences in and of themselves (
Baggs,
n.d.).
Kathleen Seidel, a neurodiversity activist who has a son with
Asperger’s Syndrome and exhibits many of the characteristics of
Asperger’s Syndrome herself, addresses the counterproductive nature of
trying to force people on the autistic spectrum to conform to
behavioral norms in the following excerpt from a letter to the
Congressional Autism Caucus. She writes:
Many autistic adults have described how
they find eye contact uncomfortable, distressing and counterproductive
to comprehension or communication; many have described how rocking or
other harmless repetitive acts help to calm their nerves and focus on
matters at hand. I believe that we should pay attention to such
information so that we do not spend a lot of time and effort trying to
persuade both autistic children and adults to imitate behavior that is
alien and nonfunctional to them, or to eradicate behavior that is
natural and useful to them, for the sole purpose of making it easier
for inflexible neurologically typical people to feel comfortable in
their presence (Seidel as quoted in
Antonetta,
2005, p.10).
The desire to be freed from forced behavioral conformity, when such
conformity is not seen by an individual to be in their best interest,
is probably the most central concern of the neurodiversity movement and
community. Much of the therapeutic focus in programs working with
children with Autism and Autistic spectrum disorders aims at teaching
these children how to control behaviors seen as socially aberrant, such
as ‘stimming’ (the term used by people within this community to
describe self stimulating behaviors such as rocking and flapping which
are used as a means of self soothing), and how to mimic ‘appropriate’
neurotypical behaviors such as maintaining eye contact and learning to
engage in social small talk and group activities. Discussion and
debate between Autistic activists involved with the Neurodiversity
movement and those involved with organizations in pursuit of a ‘cure’
often centers around applied behavioral analysis therapy, which is to
date the "most scientifically proven . . . treatment for autism"
(
Baker, 2006, p.27).
ABA therapy is a full-time intensive treatment program which
specifically aims to break neurotypical behaviors down into step by
step segments and then to teach the autistic child when and how to
imitate whatever behavior is seen to be appropriate for a given context
(
i.e. behavior for sitting in
a classroom, interacting with a peer, etc.) (
Baker,
2006, p.27).
Dana Baker points out that, while this therapy can be very helpful for
those people on the more involved end of the autistic spectrum, "for
those for whom autism is a more manageable difference, ABA therapy can
represent oppression of essential elements of their personality and
thought process that discriminates against all but the more
neurologically typical thought and behavior patterns" (
2006, p.27).
Gareth Nelson, who has Asperger’s Syndrome and is one of two
co-founders of Aspies For Freedom, a web based Autistic rights
organization, states that, although it is possible for many people on
the milder end of the autistic spectrum to force themselves to stop
stimming, to do so requires constant self vigilance of a level which
limits the individual’s ability to absorb and process information and
interact with his/her environment. In an article describing the
first Autistic Pride day, organized by Aspies for Freedom, Nelson says:
"Any behavior can be stopped with enough willpower, but sitting in a
classroom focusing on 'don’t stim' rather than focusing on the work is
obviously harmful" (
Trivedi, 2005,
p.37).
Other activists point out that, even for people severely affected by
autism, ABA therapy has the potential to do far more harm than good
because it focuses not on understanding the root causes of behaviors
such as tantrums and stimming, but simply on teaching the child to
repress these behaviors -- often through methods such as forced
exposure to stimuli and situations such as forced holding and eye
contact which can be extremely painful and disturbing to autistic
individuals. This can be especially devastating to non-verbal
individuals or individuals whose ability to communicate verbally is
severely limited as ‘behaviors’ --
i.e.
tantrums, screaming, rocking -- are often their only real means of
communicating the extent of their discomfort. A
New York Times article exploring
the impact of the Neurodiversity movement on education reports that:
‘Some autistic adults, including some who have had the therapy, say
that at its best it trains children to repress their natural form of
expression and at its worst borders on being abusive. If an autistic
child who screams every time he is taken to the supermarket is trained
not to, for example, he may still be experiencing pain from the
fluorescent lights and crush of strangers’ (
Harmon,
2004).
Furthermore, focusing on behavioral conformity teaches children (and
adults) with autism or other emotional, sensory and processing
differences, that there is something intrinsically wrong with who they
are and the way they experience the world. Because, as pointed
out in the Jim Sinclair speech discussed above, it is impossible to
separate out one’s sense of self and one’s manner of perceiving and
processing the world, to teach someone that their manner of being in
the world is bad and must be subjected to constant control and hidden
from view is akin to an act of colonization of the self leading to
widespread depression and self esteem issues among members of these
communities.
In her manifesto “The World I Want to Live In”, activist Amanda Baggs
describes this type of behaviorally repressive environment as:
A world in which autistics are expected
to submit to being ‘repaired’ . . . a world where autistics are
subjected to abuse, ridicule, and punishment for being who we are . . .
a world where autistics are given dangerous psychiatric drugs,
and treatments which attempt to force neurotypical behavior on
autistics. This is a world where autistics who manage to mimic
neurotypical behavior well enough to “get by in the world” are often
plagued by deep emotional and self-image problems because of the
discrepancy between who they are and what they appear to be . . . This
is a world where autistics are punished every day for being real, and
rewarded for being false (n.d.).
Activists within the Neurodiversity Movement have no interest in
learning to be or appear to be the same as ‘neurotypical’ people.
They do not want to learn to ‘pass’ and they do not want to be
punished, by lack of access to satisfying work, educational, and
recreational opportunities and social sanctions, for not passing. They
want to be recognized for their differences in such as way that those
differences are seen as positive and valued for the alternative
perspectives they bring to bear on consensually accepted modes of
perception and interaction. They want, as Baggs goes on to say,
‘to live in a world where it is okay, even admirable, to be autistic .
. . a world where I can be sure that autistics will be loved and
respected as who we are, not drugged or forced to behave as something
we are not’ (n.d.).
Historical
precedents of the Neurodiversity Movement: Antipsychiatry and the
Psychiatric Patient Liberation Movements
The focus on freedom from psychiatric constraint and behavioral
conformity within the Neurodiversity movement has its roots in the
‘anti-psychiatry’ movement, (closely connected to and sometimes seen as
interchangeable with the “radical psychiatry” movement), of the sixties
and seventies. Key proponents of the anti-psychiatry movement
included Thomas Szasz, R.D. Lang, Theodore Lidz and Silvano
Arieti. This movement primarily concerned itself with the loose
use of the label “schizophrenic” as a catch-all for behavior and
thoughts perceived as ‘antisocial’ and explored the idea that
psychiatric illness was a socially constructed concept. So-called
‘cures’ or ‘treatments’ of ‘problems with living’-- the movement’s
preferred term for psychiatric or emotional differences and/or crises
-- were perceived as functioning to make sure that the patient remained
ill with no real treatment plan or hope for recovery.
Experiments, such as that conducted by David Rosenhan and a team of
volunteers, were conducted in which ‘sane’ people were sent into
psychiatric hospitals to discover the extent to which ‘normal’ behavior
would be interpreted as ‘abnormal’ once a psychiatric label had been
attached to the person exhibiting the ‘normal’ behavior. In his
article discussing the results of this particular experiment, Rosenhan (
1973)
points out that "normality and abnormality are not universal.
What is viewed as normal in one culture may be seen as quite aberrant
in another’ and comes to the conclusion that ‘psychological
categorization of mental illness is useless at best and downright
harmful, misleading, and pejorative at worst. Psychiatric
diagnoses . . . are in the mind of the observers and not valid
summaries of characteristics displayed by the observed" (p. 250).
Further, proponents of the Anti-Psychiatry school of thought
questioned whether it was indeed the individuals labeled mentally ill
who were unwell or whether it was society itself that was ill, thus
rendering the perceptions, experiences, and thoughts of the
‘schizophrenic’ a healthy and necessary response to a distorted
cultural environment that ought to be taken seriously and heeded as a
social wake-up call. R.D Laing wrote that the labeling of an
individual as schizophrenic does not necessarily mean that the person
is undergoing:
an essentially pathological process, of
unknown nature and origin, going on in his or her body. It does
not mean that the process is, primarily or secondarily, a
psycho-pathological one, going on
in
the
psyche of the
person. But it does establish as a social fact that person
labeled is one of Them . . . social adaptation to a dysfunctional
society may be very dangerous . . . Our society may itself have become
biologically dysfunctional, and some forms of schizophrenic alienation
from the alienation of society may have a sociobiological function that
we have not recognized . . . There is no such ‘condition’ as
‘schizophrenia,’ but the label is a social fact and the social fact a
political event (
1967,
p.83).
Thomas Szasz further theorized institutionalized psychiatry and the
social services system as a means of social control, calling it a form
of ‘social tranquilization’ (
1968,
p.259). He acknowledged that
these institutions do, in some ways, fulfill basic human needs and aim
to alleviate suffering, but stated that it was in part precisely
because these systems have the power to give or withhold necessary
services and goods from their clients that they are able to wield both
subtle and blatant forms of control over the lives and minds of those
who come under their care (
Szasz,
1968, 259). Thus, he wrote,
‘these systems are admirably suited for the purpose of keeping “in
line” potentially discontented members (or groups) of society’
(
Szasz,
1968, p.260). Determining who falls into the category ‘well’
and
who falls into the category ‘sick’ is one of the primary ways in which
institutionalized psychiatry functions as a form of social
control. The standards according to which one is categorized as
‘well’ or ‘sick’ vary according to the social values and needs of a
given time and place and perform specific social functions. What
was at one point in time considered within the range of normal behavior
or mental functioning can at another be re-classified as a sign of
illness necessitating that an individual exhibiting signs of the now
disfavored ‘condition’ be subjected to medical and/or governmental
control (through the form of government provided social and medical
services).
Writing in 1959, Szasz saw society as engaged in a massive process of
re-categorization in which a multitude of behaviors previously accepted
as normal, if annoying, or as ‘sinful’ are being brought under the
domain of institutionalized psychiatry. He wrotes: "[Over the
last sixty or seventy years] a vast number of occurrences were
reclassified as “illnesses.” We have thus come to regard phobias,
delinquencies, divorce, homicide, addiction, and so on almost without
limit as psychiatric illnesses. This is a colossal and costly
mistake’ (
Szasz, 1968, p.230).
This process of
reclassification primarily benefits the social/economic institutions of
psychiatry, medicine, and associated services, rather than the
individuals who gain the designation ‘ill’. These
reclassifications are made more problematic because of our tendency to
assume that such classifications are ‘natural’ rather than constructed,
that a designation of ‘mentally ill’ speaks to something unchangeable
and essential about a person’s psychobiological make-up which would
necessitate medical control and supervision in any social environment,
rather than seeing that person’s differences as simply making it
difficult for them to maneuver within the current social environment or
potentially as caused or aggravated by the social environment itself
(
Szasz, 1968, p.230).
“Brains
that Work a Little Bit Differently“: Valuing the Gifts of Neurodiverse
Minds. [2]
The present day Neurodiversity Movement does not dispute that people
who can be classified as having conditions such as attention deficit
disorder, attention deficit hyperactivity disorder, bipolar disorder,
Tourette’s, dyslexia, schizophrenia and so on have physically based
neurological differences (
Trivedi, 2005,
p.38). In fact, the
physical basis of their differences is one of the things used by
members of this movement to make the case that these differences are
simply another form of human diversity or potential for human
consciousness, rather than a mental illness. Harvey Blume, in an
early article exploring the ideas behind the Neurodiversity movement,
summed up the message put forth by the Institute for the Neurologically
Typical and other activist websites/organizations in the following way:
"Neurodiversity may be every bit as crucial for the human race as
biodiversity is for life in general. Who can say what form of
wiring will prove best at any given moment?" (
1997).
Recent developments in neuroscience seem to support the idea that
neurological difference across a wide range of areas is normal and does
not necessarily have to be equated with deficiency. In an article
entitled, ‘Neurodiversity Forever: The Disability Movement Turns to
Brains’, neurologist Dr. Antonio Damasio, was quoted as stating that:
What all of our efforts in neuroscience
are demonstrating is that you have many peculiar ways of arranging a
human brain and there are all sorts of varieties of creative,
successful human beings. For awhile it is going to be a rather
relentless process as there are more and more discoveries of people who
have something that could be called a defect and yet have immense
talents in one way or another (
Harmon, 2004).
Members of these communities see themselves as possessing particular
qualities which have the capacity to function as gifts and to provide
valuable contributions to society given the right circumstances.
Antonetta writes that the World Wide Web, which has proved such an
incredible resource for communication among neurodiverse individuals:
drew a great deal of inspiration from
an information system called Xanadu, developed by a hyperactive adult
named Ted Nelson. Nelson coined the term hypertext and
conceptualized a universe of linked information’ mirroring his own
mental activity which he says would be best described as a ‘hummingbird
mind’ which darts around drawing quick and diverse connections among
many apparently disparate things (
2005,
p.7).
She also draws attention to the fact that bipolar disorder, (or
manic-depression- a term which, though medically out of date, many
manic-depressive people prefer as it more accurately describes their
experiences), has a long history of association with creativity, a
connection discussed at length by Kay Redfield Jamison in her book
Touched By Fire: Manic-Depressive Illness
and the Artistic Temperament (cited in
Antonetta, 2005,
p.8).
Conducting a poll of what she calls her ‘online tribe’, other bipolar
people participating in specialized listservs and chatrooms, Antonetta
discovered that, like her, most responders like their minds and the
gifts their bipolarity brings them. One man she quotes says: "I
choose not to look at bipolarity as an illness at all. In fact, I
couldn’t imagine myself as not being bipolar, nor would I want to
be. The bipolar is a strong component of who I am, and I do not
wish to be anyone else but me" (p. 89). Another respondent wrote,
"I
feel, and cause others to feel . . . Touched, the life of the
imagination is the real life" (
Antonetta,
2005, p.90).
Temple Grandin, a well know autistic activist who teaches at Colorado
State University, writes that students with Asperger’s or high
functioning autism often excel at maths, sciences and music.
These students have enormous potential for success if given the
appropriate assistance and channeled into appropriate professions as
they go on to college and out into the workforce. However, due to
the fact that these students have received the label of ‘autistic’,
school systems, social services and parents often neglect cultivation
of the students’ gifts and focus instead on their deficits. She
cites one case in which a student was denied a place in his school’s
gifted program due to his autistic label, although he qualified to
participate by dint of his IQ and his academic performance. In
another case, a parent told her they were so upset by their child’s
poor social skills that they had decided not to allow him to take a
longed for computer course. These are the types of decisions
which she sees as keeping high functioning autistic and Asperger’s
people from achieving their potential and making positive contributions
in the fields at which they excel (
Grandin,
n.d).
The fact that people involved in the neurodiversity movement see
themselves as gifted by and take joy in many of the qualities
associated with their neurodiversity does not necessarily indicate a
wholesale rejection of therapeutic intervention, including the
judicious use of psychiatric medicines to modify ‘symptoms’ they find
overly uncomfortable, dangerous, or which interfere with their ability
to accomplish their goals and maneuver in the world as it is presently
constructed. As Antonetta writes:
Of the people I know who qualify as
neuroatypical, including myself, I do not know any who refuse
medication or therapy . . . I take medication and have for some thirty
years. I have three tan vials, three neurocorrectors -- primarily
a drug called Depakote -- that tether me to your world wholly, if you
live on the other side of this divide. When prescriptions run
out, or I misplace hand luggage, the panic’s overwhelming,
childlike. I have no desire to develop more word infatuations and
word aversions and more of other things, as well (
2005, p.9).
The point is not to eschew all forms of help regardless of the negative
impact this might have on one’s life, but to make sure that choices
regarding medication and therapy are truly that -- choices. While
many neurodiversity activists, such as Antonetta and Amanda Baggs, are
quite up front about their use of medication and/or social services,
they are also adamant about their right to control the extent to which
they make use of these resources and their desire never to be
overmedicated. As Antonetta puts it:
I don’t often remember what it feels
like to be suicidal, and while I’m manic from time to time and
depressed, I don’t conjure up devils. But I would not choose ever
to become overmedicated or to leave my tribe. I like my mind the
way it is, like a striving city, or a small town at least, noisy and
architectural (
2005, p.89).
While largely in favor of making ‘patient’-controlled use of symptom
modifying medications and therapies widely available, they are also
adamantly opposed to ‘cure’ oriented activism and research, fearing
that a focus on curing autism and other neurological differences --
along with increasingly detailed prenatal testing and the pressure
often placed on neurodiverse populations in which difference can be
clearly linked to heredity not to have children -- will "drag society
into the murky zone of eugenics" (
Trivedi,
2005, p.38).
Reflecting on this possibility, Antonetta echoes the sentiments of many
neurodiversity activists when she writes: " . . . it frightens me, the
easy possibility of erasure of my own way of thinking" (
2005,
p.10).
It is the rigidity of social structures and expectations designed with
‘neurotypical’ people in mind which turn the differences associated
with neurodiversity into disabilities. Arthur Caplan, director of
the University of Pennsylvania Center for Bioethics, comments "One
definition of disease is that it destroys your ability to function --
to
live independently, feed and groom yourself and get around. Any
disorder that inhibits these activities . . . is robbing a person of an
acceptable quality of life and should be treated" (
Trivedi, 2005,
p.38). Most people within the neurodiversity movement would agree
with Caplan’s definition of a disease. However, neurodiversity
activists believe that it is hegemonic social structures, discourses
about normality and cultural attitudes and/or behavioral expectations
which create barriers prohibiting neurodiverse individuals from
exercising individual choice and personal development and thus, it is
the structures and discourses which are in need of treatment and a
cure, not the individuals.
The
Cultural Construction of Disability
Susan Wendall, writing in the context of the wider Disability rights
movement, and Dana Lee Baker, who specifically addresses autism and
discussion surrounding the relationship between
neurodiversity/neurological disability and the public sector, both
address the ways in ‘disability’ is constructed and maintained through
social arrangements and discourses about normality. Though
Wendall’s work is primarily focused on physical disability, several of
what she points to as key factors in the social construction of
disability hold true for the transformation of neurological differences
into disability as well. These are: the pace of life,
expectations for performance, the public/private divide, and failure to
organize society so that people are able to get the ‘amount and kind of
help they need to participate fully in all major aspects of life in the
society, including making a significant contribution in the form of
work" (
Wendall, 2006, p.26).
Increases in the pace at which one is expected to be able to function
and produce works to create disability in part by setting the bar for
fast, efficient production and multi-tasking abilities higher and
higher so that more and more people are unable to function effectively
at the required pace and with the expected levels of
productivity. Thus, differences which might be minor in a more
slow paced culture, or one in which expectations for pace and
production are more flexible and oriented towards the needs and styles
of individuals, become disabling conditions which affect one’s ability
to provide for oneself and pursue one’s goals. Attempting to keep
up with these expectations of pace and performance can also worsen the
pre-existing difference/disability as well as negatively impacting a
person’s quality of life by "decreas(ing) the energy available for
other life activities, which may upset the delicate balance of energy
by which a person manages to participate in them and thus exclude
her/him from these activities" (
Wendell,
1996, p.25).
The public/private divide creates a context in which the public world
is seen as “the world of strength, the positive (valued) body,
performance and production, the non-disabled and young adults”
(
Wendell, 2006, p.26). In such a
context difference, perceived as
‘disease’, becomes something to be hidden, a sign of weakness not be
discussed. This leads to an environment in which people are
uncomfortable explaining and exhibiting their differences openly and
asking for needed assistance and accommodations which then increases
the extent to which their difference is experienced as a disability
(
Wendell, 2006, p.24- p.26).
Wendall writes that social expectations concerning the pace of life,
productivity and the levels of help that are considered reasonable and
normative are set with a generic, unrealistic ‘paradigm citizen’ in
mind (
2006, p.27). This paradigm
citizen is, as she defines him,
modeled on a strong, healthy, physically and neurologically normative
young man. She points out that it’s important to remember, when
thinking about the different types of help people with disabilities or
differences may need to function in the mainstream world, that "most
industrialized societies give non disabled people . . . a lot of help
in the form of education, training, social support, public
communication and transportation facilities, public recreation and
other services" (
2006, p.27). It
is only when the type of help
needed to perform a particular activity differs from the help offered
to ‘paradigm citizens’ that this help is seen as a special service
which signifies disability and dependence. Yet, much, though not
all of the help that people with disabilities need is required because
their bodies were damaged by social conditions, or because they cannot
meet social expectations of performance, or because the narrowly
conceived physical structure and social organization of society have
placed them at a disadvantage; in other words, it is needed to overcome
problems that were created socially (
Wendell,
2006, p.27).
Dana Lee Baker looks at the ways in which public programs and public
sector services are affected by and attempt to respond to the
challenges raised by working to simultaneous address concerns raised by
neurodiversity and neurological disability. She defines the term
neurodiversity as those aspects of
neurological difference which are experienced as an integral part of
the identity of an individual/community and which are ‘elective’
insofar as the individual/community sees these differences as positive
and does not seek medical intervention to modify or eradicate these
differences. The term ‘neurological disability’, on the other
hand, refers to "impairment of socially determined major life functions
caused by observable, diagnosable differences in an individual’s brain"
(
Baker, 2006, p.15). She writes
that increasing diversity of many
sorts within the U.S. has forced public programs to be increasingly
creative and flexible in order to address a wide variety of needs,
concerns, and viewpoints.
Within the current social context, in which the call for positive
acceptance of traits associated with neurodiversity has become a
dominant cultural trend within affected communities, public sector
efforts to design and administer programs and services for these
communities has been complicated by the necessity of figuring out how
to "create affordable service packages and program structures that
allow those who wish to seek intervention to do so while assuring that
those who wish to decline treatment are allowed to do so . . .
Distinguishing between and simultaneously supporting these two
elements, therefore, is an especially telling challenge for modern
public administrators" (
Baker, 2006,
p.27). Diversity based initiatives
and programs on the level of social policy and administrative
strategies traditionally aim to "create programs which that assist
those with categorical differences to integrate and to construct
broad-based rights initiatives to prevent- or at least dissuade-
discrimination on the basis of categorical difference" (
Baker, 2006,
p.15). This means, in part, that identifying oneself as belonging
within a particular category of difference (receiving a diagnosis) is
essential in determining one’s ability to receive services and
accommodations. This can cause difficulty on a number of fronts,
not least of which is the fact that receiving and sharing a psychiatric
label can have many negative social consequences.
Fear of negative consequences means both that individual adults are
often loathe to seek out or make public psychiatric labels and also
that doctors are often loathe to apply labels with particularly
negative social connotations, such as autism, to children. Though
this is well meant on the part of physicians, who want to avoid dooming
the child to a lifetime of being perceived as their label rather than
themselves, it restricts a child’s ability to have access to early
intervention and school based programs and therapies which teach
important coping skills early and thus work to prevent increasing
‘disability’ as the child develops (
Baker,
2006, p.19). This is
true not only for the development of and participation in programs
aimed at minimizing difference, but also in terms of the potential
development of programs aimed at incorporating unmodified
neurodiversity (
Baker, 2006,
p.19). As Baker writes, "Since the
public sector’s role in both supporting neurodiversity and mediating
the effects of neurological disability depend on an identified
population of individuals with autism, systemic differences in paths to
diagnosis impair equitable management of diversity in the public
administration of disability related programs" (
2006,
p.19).
Activism
and Experiments in Neurodiverse Living
Neurodiversity movement activists work on a number of different levels
to counteract the structural inequalities preventing neurodiverse
individuals from obtaining necessary services, the pursuit of their
personal goals, and full participation in society to the extent
that such participation is desired. Here again they draw on
models of radical ‘patient-led’ organizations which developed out of
the Antipsychiatry Movement of the sixties and seventies.
Organizations such as the Mental Patients Liberation Front, Project
Release and the Mental Patient Alliance were led by ‘mental patients’
(most of whom who had experienced previous institutionalization and
unwelcome levels of ‘forced’ medication) for ‘mental patients’ (
Hunter,
n.d., unpaged). Such groups had a three pronged approach to
creating change. This approach began with consciousness raising among
both mental patients and the general public about myths regarding
mental illness and the abusive and coercive aspects of psychiatry and
forced psychiatric medication. It also encompassed extensive
efforts to formulate and develop ‘patient controlled alternatives’ to
the mental health system (
Chamberlin, 1978,
p.63). Judi
Chamberlin describes these alternative structures in the following way:
Nonprofessional, client controlled
services don’t divide people into “sick” and “well,” “helper” and
“helped.” They see each person as having a combination of
strengths and weaknesses, and the need for help in one area does not
negate the ability to help others also . . . In order to achieve those
ends, people have to recognize their own strengths and abilities.
They have to discover that sometimes there are no “experts” to turn
to. People who seek out these alternatives, have experienced the
harm that the “experts” and their methods can cause (
1978, p.63-64).
The idea behind experiments in patient controlled alternatives (which
included both residential and day programs) was that people who had
experienced ‘problems in living’ themselves would be best equipped to
understand and help other people experiencing similar types of
challenges. While nearly all such programs continued to use
patient-friendly psychiatrists and counselors as consults and
assistants in their facilities, it was the patients who ran and
organized the facilities, planned activities, problem-solved
difficulties and disputes, and helped counsel each other. Each
patient or ex-patient was seen as having the sovereign right to
determine what kinds of treatments and services they might want to make
use of, including the right to decline any treatments or services at
all. Chamberlin explains that, in patient controlled facilities,
"the definition of need would come from the client. People
behaving in ways that other people found troublesome but that they
themselves found satisfactory could not be forced to partake of any
services, no matter how humane, against their will" (
1978, p.19).
This held true regardless of how far from consensual reality an
individual’s experience of the world might appear to be because, as she
goes on to say, "the social control functions of the current
psychiatric system cannot be carried over into the alternative model,
or it loses its alternative quality" (
Chamberlin,
1978, p.19).
The belief that the extent of difference one experiences should not be
a factor in determining to what extent one should be subjected to
outside control and forced compliance with drug and other therapies
carries over into the neurodiversity movement of today. Amanda
Baggs writes that, in the neurodiversity tolerant world of the future
she envisions, she "want(s) those autistics who are incapable of
working to still be able to live a dignified life the way they want to
live it" (
Baggs, n.d, unpaged).
Finally, because they understood
that so-called mentally ill people would often find themselves in the
grip of institutionalized medicine for a variety of reasons, including
lack of access to alternatives, patient led organizations also worked
to reform traditional in-patient and out-patient psychiatric care
(
Chamberlin, 1978).
Consciousness raising efforts on the part of autistic neurodiversity
activists have led to increased interest in developing and implementing
‘autism friendly’ therapies, school programs and retreats, such as the
ASPIE school (Autistic Strength Purpose and Independence in Education),
Autreat -- an annual conference for people with Autistic Spectrum
disorders, and the experimental early intervention programs being
tested at the Kennedy Kreiger Institute in Baltimore, MD (
Trivedi,
2005, p.39). These programs use techniques and create
environments focused around the dual goals of affirming that ‘it is
O.K. to “act autistic”’ while providing advice and information on ‘how
to get by in a world where it is not’ (
Harmon,
2004).
At the A.S.P.I.E. school, children are ‘encourage(d) (to) learn social
skills by choice . . . We deconstruct why (neurotypical) people make
eye contact, for example, and show why these behaviors will be useful
for students who want to live independently and get a job in the NT
world where they are a minority’ (
Trivedi,
2005, p.39). Children
are not punished or looked down upon for exhibiting autistic behavior
but are taught identify and interpret the emotions and sensory
experiences which cause them to become overwhelmed and then to
cultivate ways in which to use their strengths to address aspects of
living which cause them difficulty and confusion (
Harmon, 2004).
Autreat, a neurodiversity oriented conference which is run by and for
people on the autistic spectrum, provides colored tags for people to
wear indicating whether they wish to be approached for conversation or
not and hosts discussions regarding ‘how to deal with your neurotypical
parents’ and parsing the risks and benefits of making the decision to
‘come out’ as autistic and free oneself from excessive self enforced
behavioral conformity (
Harmon, 2004,
Trivedi, 2005, p.39).
The Kennedy Krieger Institute programs provide autism friendly
environments in which toddlers are taught basic language and
interaction skills at their own pace and without negative consequencing
for autistic behaviors and needs. Beyond this, even a cursory
internet search will turn up a good deal of information regarding ways
in which to create an autism friendly environment in the classroom and
how to best teach to autistic learning styles. These techniques
are based on information provided by autistic individuals and activists
through consciousness and include such tips as: ‘Stop talking if you
observe stereotypical behavior such as handflapping or humming (a
common sign of overload) . . . Know that background stress and noise
will prevent communication . . . Do not insist on eye contact . . .
reduce flickering lights and fluorescent lights . . . Do not push the
autistic student to behave as a neurotypical . . . ’ (
Lynn, 2007). Many examples of
schools oriented towards
cultivating ADD/ADHD friendly learning techniques and classrooms in
which the characteristics associated with ADD/ADHD are viewed as
positive also exist and, although less widely theorized and
disseminated at this point, material discussing bipolar friendly
classrooms and teaching methods is also being developed.
“There
is No Madness but That Which is in Every Man”: Notes Towards a Manifesto
The struggle neurodiversity activists face as they attempt to create a
world in which they are not ‘punished every day for being real, and
rewarded for being false’ can perhaps best be seen as a culture clash
taking place between the dominant culture(s) of ‘neurotypicals’ and the
growing subculture(s) of the ‘neurodiverse’. Cultures, as Claudia
Strauss and Naomi Quinn define them, develop out of systems of shared
meaning (
1997).
Cultural meaning, they write, is "the typical
(frequently recurring and widely shared aspects of the) interpretation
of some type of object or event evoked in people as a result of their
similar life experiences" (
1997,
p.16). Because of their
differing experiences with perception, emotion, and differing needs for
or ways of understanding personal interaction, community, body
language, etc., neurotypical and neurodiverse people have developed
different systems of cultural meaning. Autistic people frequently
express this feeling of cultural difference; calling for non-autistic
people to approach them ‘as if we were aliens, not as if we were
damaged versions of yourself’ (
Baggs, n.d.,
unpaged). Calls
to be seen as alien beings and to be treated with the respect which
would be extended towards treasured visitors from a vastly different
culture proliferate wildly in neurodiversity literature, beginning with
the speech marking the beginning of the movement, Jim Sinclair’s ‘Don’t
Mourn for Us.’
Sinclair encourages parents of autistic children to consider their
child an ‘alien child . . . stranded in an alien world’ .
Because the autistic child is alien to this world, he writes, s/he can
not be expected to have the same set of shared meanings as non-autistic
people have. Rather than reading the child’s attempts at
communication (or what seems to be a lack thereof) through their own
assumptions and expectations, parents of autistic children should "give
up the certainty the comes of being on your own familiar territory, of
knowing you’re in charge, and let your child teach you a little of her
language, guide you a little way into his world" (
Sinclair,
1993). Perhaps it is this call for neurotypicals to ‘give up
the
certainty that comes of being in your own familiar territory, of
knowing your in charge’ that makes the neurodiversity movement appear
so threatening, or just so plain out there, to many people who identify
with the neurotypical world view and to parents of neurodiverse
children who hope for a cure. After all, as Foucault (
1988) writes, what
frightens us most about the ‘madman’ is that we see ourselves reflected
in him (or vice versa) and fear succumbing to our own madness, losing
control and/or losing the self we have considered our own for so long
and entering an unknown reality. "There is no madness," he
writes, "but that which is in every man" (p. 26).
None of us would wish to be mad in the sense of being completely
isolated in our own minds, lost to the people and world around us and
unable to communicate our emotions, perceptions and thoughts. As
Antonetta writes, ‘Many things regarded as pathologies can be terrible,
rendering a life as most people would define it -- with things like
autonomy and connection -- impossible . . . There exist severe, low
functioning autisms and other cases, like untreatable manic depressions
. . . that probably warrant the term
tragedy’
(
2005, p.12). No one, as ‘cure’
oriented parents sometimes fear,
is trying to withhold therapy, medication or any other intervention
from people whose lives can be improved by these things and who (as
adults) desire to make use of them. Beyond that, however, what is
so scary and/or terrible about a world in which all of us, neurodiverse
and neurotypical alike, can speak openly and honestly about our
feelings, experiences and perceptions without fear of
repercussions? What actual harm is it if some of us make more eye
contact or less than other people, if we rock, pace, laugh or cry at
odd times at seemingly obscure things, make wild proclamations or
refuse to speak, talk about or even to the people who populate our
heads, or simply ‘talk too long about washing machines or the roots of
square numbers’ (
Harmon, 2007)?
Such things might make the ‘neurotypically’ identified people
uncomfortable. They might feel confused, torn between staring and
looking away, uncertain how or if to respond to these weird people
doing and saying weird things. They might wonder if they should
intervene. Eventually, feeling confused, uncomfortable and
possibly annoyed, such people might find themselves leaving the
vicinity of the weird person, retreating to a ‘safer’ place. Yet
these things -- social confusion, discomfort, uncertainty, feeling
forced to ‘retreat’ to safer spaces -- are things many neurodiverse
people deal with on a daily basis. Perhaps, rather than either
group imposing its standards and enforcing conformity to its own
preferred social codes, both groups need to meet each other half way
and agree to be a little uncomfortable while working to minimize levels
of discomfort severe enough to prevent learning and working towards
self actualization- whatever that might mean to a given
individual. Luckily, as Strauss and Quinn go on to explain,
cultural meaning and the social standards and structures connected to
it, are open to change. ‘Meanings’, they write, "are the product
of current events in the public world interacting with mental
structures, which are in turn the product of previous such interactions
with the world" (
1997,
p.6). As the neurodiversity movement works
to make the experiences, humanity and potential contributions of many
different types of minds understandable to the wider public, our
automatic assumptions about and responses to difference are likely to
undergo a slow change. Already we can see the beginnings of
structural changes which have been brought about through changing
understandings regarding the need to take what neurologically different
people are saying about their needs, desires and potentials
seriously. If, as humans, we continue to find the courage to
share ourselves with each other and to listen to what we all have to
say, more change is likely in the future.
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Notes
[
1] Throughout this paper I will be using the phrasing
‘autistic people’ and ‘autistics.’ This is the construction
preferred by members of that community, as opposed to the more
“politically correct” outsider’s phrasing “person with autism”.
Members of the autistic community who are aligned with neurodiversity
activism prefer the term “autistic person” because it highlights the
extent to which they see their autism as an integral aspect of who they
are, rather than an add-on.
[
2] Phrase taken from: Bragdon, A., Gamon, D.
(2000) Brains that Work a Little Bit Differently: Recent
Discoveries About Common Brain Diversities (New York, Barnes and Noble
Press).
Biographical
Note:
Kathryn Boundy is a doctoral student in the Ph.D. in Comparative
Studies at Florida Atlantic University. She holds a bachelor's
degree in philosophy and master's degrees in women's studies and
English literature. Her current research focuses on the social
implications of the questions raised by the expanding neurodiversity
movement
http://radicalpsychology.org/vol7-1/boundy.html
