What
If We Eliminate the Word "Rehabilitation" from Our Work?
by Don Lavin
People with disabilities
don't need to be "fixed" -- they
need opportunities and access to customized supports.
I am about to commit an
act of heresy. And quite likely, I am about to raise a few eyebrows
from my colleagues. After 30 years of work in the field of rehabilitation,
it's time for me to come out of the closet. Here it is: I have
never really liked using the term "rehabilitation." I
believe we must eliminate its message from the important work we
do. And yes, this means dropping the use of "habilitation" as
well.
According to Webster's
dictionary, the word rehabilitation means "to
restore rank, privileges, rights, etc. lost or forfeited; to vindicate
or restore the reputation of; to restore something damaged or decayed
to its previous good condition (e.g., disabled person or a criminal)
to physical or mental health through training." Does this definition
accurately describe the work we do today? I don't think so.
A short history lesson
is in order here. The word "rehabilitation" found
its way into federal legislation after World War I when the United
States acted to support thousands of military veterans returning
with war injuries. Public efforts to "rehabilitate" veterans
with disabilities were eventually expanded to the general population
so other citizens with disabilities had the opportunity to go to
work and support themselves. The term "rehabilitation" was
probably the best description of services being carried out in the
1920s. Sure, it may still describe some restorative, therapeutic,
and medical treatments that some people with disabilities need to
go to work and live more independently. It is not, however, suitable
for the vocational or employment area. Further, I believe it is misleading
in describing the attitudes and services the most progressive community
rehabilitation providers embrace today.
Simply said, we need to
adopt service approaches that accept people with disabilities for
who they are. And we need to leave behind any archaic notion that
people with disabilities are "damaged" or "broken" people
needing to be "fixed." I believe the word "rehabilitation" communicates
and reinforces the wrong message. We need to eliminate any veiled
message we may be sending to the public and people closely associated
with the work we do.
Think about these questions: What are we saying to prospective employers
about job candidates we are representing for hire? What are we communicating
to prospective and existing staff about their roles in delivering
professional services (i.e., consultants vs. caretakers)? What message
are we sending to coworkers, neighbors, and other community members
about their roles as partners in our work? Finally, what are we communicating
to the valued people we are privileged to serve about themselves?
When you get down to the basics, this is no small matter. The message
of rehabilitation is counterproductive and it must be changed.
New Way of Thinking about Our Work
No, I am not suggesting
a clever maneuver to circumvent realities or "sugar coat" the
challenges associated with the work we do. Instead, I think we
need a new way of thinking and communicating about our work. Let's
consider these questions instead: Who among us does not have daily
challenges in their lives? Who among us does not need to grow as
individuals, develop new skills, or dedicate themselves to lifelong
learning? And who among us does not need regular or intermittent
support from family members, co-workers, supervisors, and others
to do our chosen work? Fundamentally, we are ALL interdependent
and need some level of customized support based on our individual
circumstances and needs.
People with disabilities are no different. It is largely a question
of the type, degree, and frequency of customized support they need
to achieve their goals. To say it simply, people with disabilities
are navigating life's journey just like the rest of us.
If you buy my argument, then how shall we communicate about the
work we do? My personal preference is that we consider adopting the
term customized employment. Why?
Individualizing the Employment Relationship to Meet Needs
Customized employment
is a new initiative launched by the Department of Labor, Office
on Disability and Employment Policy (ODEP). According to ODEP,
customized employment means "individualizing the employment
relationship between employees and employers in ways that meet the
needs of both. It is based on an individual determination of the
strengths, interests, and needs of the person with a disability,
and is also designed to meet the specific needs of the employer." This
is a simple but accurate description of the core work that needs
to be done.
The idea of "customization" is taken from Title I of the
federal Work Investment Act (WIA). WIA communicates the importance
of "universal design and access" for all Americans who
need assistance with their employment preparation and job search.
In a similar way, provisions of the Americans with Disabilities Act
(ADA) and Individuals with Disabilities Education Act (IDEA) acknowledge
a need for "customizing" by identifying rights to reasonable
accommodation and opening access to public services, buildings, employment,
and community activities that are enjoyed by all Americans.
In other words, people
with disabilities don't really need to be "fixed." Rather,
they need opportunities and access to customized supports to increase
and enhance fuller participation in their communities. The truth
is that many of the barriers they encounter have less to do with
themselves than obstructive public policies, misguided use of funding,
and a lack of universal access to education, recreation and leisure,
employment, buildings, and services. We need more than token "cut-out
ramps" in our curbs. We need to "ramp up" public attitudes
and pursue a new vision.
A recent national study
by the University of Massachusetts's Institute on Community Inclusion
(ICI) revealed that only 32 percent of people served by community
rehabilitation programs (CRPs) work in integrated jobs. Almost
a third of participants served by CRPs nationally are enrolled
in non-work programs. We need to give up on this idea that people
with disabilities only benefit when they are served by CRPs. We
have neither the resources nor expertise to be a one-size-fits-all
program for every American who has a disability. We need to stop
viewing rehabilitation as an "industry" because this very
idea perpetuates unwanted dependency of people with disabilities
on our services.
What is our role? Our core objective should be to connect people
with their communities and create opportunities so they can obtain
the employment, wages, and community integration they want and need.
Challenging Employers to Be Full Partners in the Process
By using this logic, agencies
like Rise can liberate themselves from their current roles as CRPs.
We can then move forward in new roles as "customized employment providers," and (re)habilitation
programs that do not have an employment emphasis can assume new roles
as "customized service providers." In each instance, we
support the idea that people with disabilities belong and should
be embedded in their communities. This means creating opportunities
for integrated employment in the job market for everyone who wants
to work. It also means challenging employers to become full partners
in the process. Finally, it means helping people identify and then
customizing the supports they need to develop and use their full
human potential.
A matter of semantics?
The world as we know it will not change because we choose to give
up branding our services as "rehabilitation." And
to be sure, such sweeping changes would require laborious language
and service amendments in federal legislation as well as state and
local funding statutes.
That being said, I believe
changing our public message with a new vision is worth the effort.
The time has come for us to "rehabilitate" rehabilitation.
Let's begin this transformation by humanizing and changing how we
talk about this important work we do.
Editor's note: Don Lavin
has been with Rise, Inc. since 1976 and currently serves as its
Vice President. He received his master's degree in vocational rehabilitation
from the Minnesota State University, Mankato. His commentary originally
appeared in the October 2004 edition of the Rise Reporter.
