Disaster
Services and “Special Needs”: Term
of Art or Meaningless Term?
By
June Isaacson Kailes, Disability Policy Consultant
Associate
Director, Center for Disability Issues and the Health Professions
Western
University of Health Sciences, Pomona, California
February
2005
Sponsored
by Nobody Left Behind: Disaster Preparedness
for
Persons with Mobility Impairments
Research
and Training Center on Independent Living
University
of Kansas
Funded
by a grant from Centers for Disease Control and Prevention
through
the Association of Teachers of Preventive Medicine TS#-0840
Special
Needs Populations
The term “special needs” is widely used
within the disaster services and the emergency management world. It generally
refers to an extremely broad group of people with disabilities, people with
serious mental illness, minority groups, the non-English speaking, children, and
the elderly (Centers for Disease
Control and Prevention undated). These
groups represent a large and complex variety of concerns and challenges.
Many of these groups have little in common beyond the fact that they are
often left out of programs, services and emergency planning (Kailes 2000).
Given the definition, it is conceivable that
“special needs” could cover more than 50% of the nation’s population
rendering the term rather meaningless. Continuing
to use “special
needs” does a disservice to every
group included. This term combines
a huge number of heterogeneous groups. Many question
the usefulness of such a term. Repeated pleas,
over the years, from disability advocates to replace “special needs,” with
more respectful, precise, segmented, and discrete groupings, continue to be
ignored.
Why
Spend Time on This, It’s Only A Term?
Some argue “why spend time on this, it’s
only a term?” Words can empower, encourage, confuse, discriminate, patronize,
denigrate, inflame, start wars, and bring about peace. Words can elicit love and
manifest hate, and words can paint vivid and long lasting pictures. Words affect
thoughts, thoughts affect beliefs, beliefs affect feelings, feelings affect
behavior, and behavior affects the world! Public attitudes about disability are
usually much more disabling than an actual disability. Attitudinal barriers are
the most difficult barriers to break through. The challenge is to change
attitudes using legislation, regulation, enforcement, integration, education,
relationships and LANGUAGE (Kailes 1990).
In addition to the issues of respectful language, it would be beneficial
for emergency managers to scrap the umbrella term “special needs” and
replace it with terms that refer to specific situations of people who might need
warning or evacuation, sheltering and other services. Managers would have a more
accurate idea of the needs they will be faced with, and how to meet those needs.
For example:
·
“Medical
needs shelter” is a more useful term than “special needs shelter.” This
terminology points to the specific reason that some people need enhanced shelter
services. Most people with disabilities and activity limitations do not require
a medical shelter. Combining the majority who don’t with the few who do need
medical services, compounds the problem for disaster service providers. There is
a danger that it may seem so large that it is unmanageable, leading to doing
nothing. In some disaster situations. the terminology triggered great confusion
causing people with disabilities to be sent to a “special needs shelter”
only to be told they were at the wrong shelter, as they had no medical needs.
·
People who do not speak English
need shelter and other disaster services provided by people who speak their
language or have interpreters present. They do not need special medical services
because of their language, and there is no reason to combine them with people
who do. On the other hand, if a non-English speaking person does need medical
services, offering these services can be problematic in the absence of effective
communication.
·
Emergency managers need to
anticipate how many people there are in their jurisdictions that have
significant memory and understanding limitations. For example, people with
cognitive limitations who do not have families or people to assist them cannot
be placed in an open emergency shelter. There needs to be a plan for where they
will be housed, and for experienced personnel to assist them, if they need to be
evacuated.
·
The only thing that seniors have
in common with each other is age. Some climb mountains or run marathons in their
90s, most do not. Only older people who have disabilities need to be considered
as part of the population. The sub-group of the older people who have specific
medical needs should be identified as such. Just grouping them with all older
elderly people will not meet their needs. Actually many older people serve as
volunteers and can be an asset in a disaster, not as part of a group with
specific needs.
Who
Are People with Disabilities
and
Other Activity Limitations?
By identifying who are people who have disabilities and other activity
limitations, one can better understand the enormity of one subset of the
so-called “special needs” group. These charts using data obtained in the
2000 U.S. Census illustrate that individuals with disabilities make up a sizable
portion of the general population within the United States. According to the
U.S. Census of 2000, they
represent 19.3 percent of the 257.2 million people who were aged 5 and older in
the civilian noninstitutionalized population, or nearly one person in five.
As the population ages, people with
disabilities rise in proportion to demographic changes. Medical and technology
advances continue to keep more people with disabilities, chronic conditions, and
activity limitations alive, healthy and functioning independently. Planning for
inclusiveness is the agenda which makes the most sense (National Council on
Disability 2000).
There
Are No “The Disabled” and No “One Size Fits All.”
Disability should not be thought of as a
condition that affects the “special” or “unfortunate few.” Disability is
a common characteristic and occurrence within the human experience. There are no
“the disabled,” and there is no “one size fits all.” People with
disabilities have the same range of personality traits, interests, and desires
as everyone else. People with disabilities are a part of the world’s
diversity. (Kailes 2002)
Most generalizations based on particular types of disabilities have
numerous exceptions. Two individuals with the same type of functional
limitations man have very different abilities and needs. Like everyone, people
with disabilities and activity limitations deal with life with different
histories, resources and attitudes. (Kaplan 1992)
Defining
Disability Broadly
In disaster management activities, it is
important to think about disability broadly. Traditional narrow definitions of
disability are not appropriate. Disability is not limited to wheelchair users
and people who are blind or deaf. Individuals with disabilities include those
with one or more activity limitations such as a reduced or inability to see,
walk, speak, hear, learn, remember, manipulate or reach controls, and/or respond
quickly. Some disabilities are quite visible, while others may be hidden such as
heart disease, emotional or psychiatric conditions, arthritis, significant
allergies, asthma, multiple chemical sensitivities, respiratory conditions, and
some visual, hearing and cognitive disabilities.
Longer life expectancies and decreasing death rates from heart disease
substantially prolong longevity and increase the numbers of people living with
chronic, nonfatal, but disabling conditions (Reis
2003).
People with disabilities and activity limitations include those who have:
·
Conditions
which interfere with walking or using stairs (joint pain, mobility device user ─
wheelchair, canes, crutches, walker)
·
Reduced
stamina, fatigue or tire easily (due to a variety of temporary or permanent
conditions)
·
Respiratory
conditions (due to heart disease, asthma, emphysema, or other symptoms triggered
by stress, exertion, or exposure to small amounts of dust or smoke, etc.)
·
Emotional,
cognitive, thinking, or learning difficulties
·
Vision
loss
·
Hearing
loss
·
Temporary
limitations resulting from, but not limited to:
o
Surgery
o
Accidents and injuries (sprains,
broken bones)
o
Pregnancy (Kailes 2002)
Disability
Should Not Be Viewed As a “You Have” or “You Don’t Have” a Disability
The concept that people either have a
disability or do not have a disability perpetuates misperceptions about the
nature of disability and activity limitations. Do not view disability as a
“you have” or “you don’t have” a disability.
Activity limitations exist along a continuum of severity and duration
(partial to total, temporary to permanent) that affect almost everyone at some
point in their lives.
Definitions
That Leave No One Behind
By adopting a broad definition, no one is
left behind, and the imperative is clear that everyone address the broad
spectrum of disability and activity limitation issues. (Reis 2004) If planning
does not embrace the value that everyone should survive, they will not!
Accommodating
People With Disabilities Often Translates Into Being Better Equipped to Serve
All
The approach to include people with disabilities should not be viewed as
one more “special interest” group that drains resources from the common
goal. Preparing to accommodate people with disabilities often translates into
being better equipped to serve all people. Anyone can convert at any moment to
having a disability particularly during emergencies. Disasters and terrorism
instantly contribute to many more people acquiring new disabilities. Following
such an event – the numbers of people with disabilities escalate. “All
Americans live in the antechamber of disability brought on by these disasters;
anyone can join the disability community in a moment, as was so dramatically
demonstrated on September 11th (National Organization on Disability
2002).” “Special is us.”
People
with Disabilities and Activity Limitations Are Part of Every Segment of the
Population
People with disabilities and activity limitations are very diverse and
should not be sidelined or compartmentalized into a “special needs” box.
"Special" implies differentness and apartness. Among disability
advocates "special" is the label often used for segregated programs.
(Woodward 1991) Programs and services continue to miss the mark when people with
disabilities are seen and served as people with “special needs” instead of
people who are a part of every segment of the general population.
Individuals
with disabilities live in the country, and the cities, go to school and work at
home and in high-rise buildings. Most people with disabilities and activity
limitations are integrated into and are actively involved in society.
All discussions and interventions to improve programs and services for
people with disabilities should use a broad definition of "disability"
that encompasses people:
People
with disabilities and people who are aging will soon constitute the majority of
the population. Most people, if they live long enough, will age into disability.
As time alters our bodies, activity and functional limitations become natural
occurrences. There is an 80% chance that all people will experience a temporary
or permanent disability at some point in their lives. (Kailes 2002)
Incorporate issues specific to including people with disabilities and
activity limitations into the fabric and the culture of emergency services, so
that the issues are not viewed as “special” “sidebar” or “in addition
to,” but part of the daily radar screen of business as usual.
Nothing
About Us Without Us
“Special needs” is a term that comes from outside of the disability
communities. A significant element in the struggle for basic human rights is
acknowledging and honoring what people call themselves. For example,
"Negro" became "Black" and is now
"African-American." "Indian" became "Native
American," "ladies" and "girls" became
"women," and “crippled” became "handicapped" and is now
"disabled."
Avoiding negative attitudes and stereotypes means neutralizing
disability-specific terms. Disability-specific language should be precise,
objective, and neutral to avoid reinforcing negative values, biases and
stereotypes. Language goes hand-in-hand with social change, both shaping it and
reflecting it. (Kailes 1990)
“Special needs” reflects the old paradigm “a lot about us without
us.” It is time to include people with disabilities in emergency services as
contributors and collaborators, not just as people viewed
as victims to be rescued. It is time to revise methods and embrace the
approach “nothing about us without us!”
Selecting
Acceptable, Respectful, and Precise Terms
It’s time to honor the plea of people with
disabilities, retire “special needs.” Update the concept in order to infuse
meaning. Segment the diverse groups that are currently lumped together in this
term. Work with the disability community and other groups currently tossed
together in “special needs” to select acceptable, respectful and precise
terminology.
June Isaacson Kailes, Associate Director, Center for Disability Issues and the Health Professions Western University of Health Sciences, Pomona, California, is well known for her national and international work in disaster preparedness for people with disabilities. Her publications include Living and Lasting on Shaky Ground: An Earthquake Preparedness Guide for People with Disabilities, distributed by California Office of Emergency Safety and Creating a Disaster: Resistant Infrastructure for People at Risk Including People with Disabilities used and published in several countries. Inspired by 9/11 and influenced by her past work in disaster preparedness, she authored Emergency Evacuation Preparedness: Taking Responsibility for Your Safety: A Guide for People with Disabilities and Other Activity Limitations. Material from this guide has been incorporated into several government and private sector evacuation plans as well as used by emergency management personnel.
About
the Sponsoring Organization
Nobody
Left Behind: Disaster Preparedness for Persons with Mobility Limitations is
a three-year research study funded by a grant to the Research and Training
Center on Independent Living at the University of Kansas, from the Centers for
Disease Control and Prevention through the Association of Teachers of Preventive
Medicine, TS#-0840. The goal of the research is to learn whether local emergency
management planning and response systems are addressing the needs of people with
mobility impairments. Best practice
models are also being explored in hopes of preventing injuries, saving lives,
and assuring that …. Nobody is Left Behind. Dr. Glen W. White is the principal
investigator and Dr. Michael Fox is the co-investigator. For information www.nobodyleftbehind2.org
or contact the project coordinator at 785-864-3791 or 785-864-0706 (TDD),
785-864-5062 (Fax)
Distribution
is encouraged and permission is granted to copy and distribute this article
provided that:
(3)
The following copyright notice and citation are attached
Kailes,
J. (2005). Who Disaster Services and “Special Needs:” Term of Art or
Meaningless Term? Kailes-Publications,
6201 Ocean Front Walk, Suite 2, Playa del Rey, California 90293-7556, http://www.jik.com/resource.html,
jik@pacbell.net.
Disclaimer
The
views expressed here expressed reflect those of the author and are not
necessarily those of the sponsoring agency.