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.