Culture, Values, and Treatment
The role of culture and societal values in shaping our attitudes toward disability is not very well researched. We know that many provider groups have specific areas of focus when treating people with disabilities:
- The medical community focuses most of its attention on stabilization and improving quality of life.
- The psychological community focuses on helping the individual adjust to life with a disability, treating and preventing depression, and promoting the family's adjustment.
- Disability rights activists work to establish laws and define policies that prevent discrimination and encourage integration into society.
Thus the physical, mental, and legal needs of people with disabilities are addressed. But how and when does the treatment community evaluate and address the cultural needs of the injured person and the family?
Here we examine various effects that culture has on determining appropriate treatment and services. We look at belief systems of the treatment community; issues of independence, family, and spirituality, and the questions of equal access to services and to understanding practitioners.
What Is Culture?
Culture helps define and maintain a group of people. It is part of all our lives. However, the term "culture" is used differently, depending on the author and the context of the information.
In some disability literature, researchers consider people with disabilities to be a cultural minority. Looking at it this way, people with disabilities are part of the "culture" of disability and also part of their racial or ethnic cultural background.
Other literature uses the term to describe persons of a racial or ethnic group. Either way, it can be a challenge for service providers and the general public to recognize both the needs of an individual with a disability and the special needs that the same individual may have as a part of an ethnic/racial group.
Typically, everyone with a disability participates in a system based on European-American values. Service organizations tend to ignore the cultural identity of the person. As a result, the person may lose his or her cultural identity when involved with the organization.
Disability Belief Systems
It's important to be aware of the values that are often cited in disability research. The most frequently seen "values" in treatment communities are these:
- People with disabilities have the right to make choices in their lives and to direct their lives.
- It's important for them to live where they choose and live independently.
- They should have access to all opportunities in their community.
These are the values promoted by treatment centers and practitioners, yet we must recognize that these values reflect the dominant culture. In essence, human service organizations often reflect middle-class values, and their practices are based on middle-class assumptions about the people and families they serve.
The Role of Independence
The issue of independence provides the most obvious example of cultural values at variance with ingrained treatment values.
Medical, legislative, and psychological efforts are often geared toward achieving independence and self-reliance. Independence is a value inherent in our American culture. As a result, an injured person may be taught throughout rehabilitation that they should strive for maximum independent function.
However, independence is not important in everyone's post-discharge life. In some people's cultural context, interdependence (depending on another) might be emphasized more than independence or self-reliance.
It could be that the family structure is set up so the person will be integrated into an interdependent familial system. It's important that the providers in your service community try to understand what your goals are for return to your family.
If the provider fails to ask you about the relative importance or unimportance of independence in your family or culture, it could be that he/she will not gauge your progress correctly. The provider may think you are sabotaging your progress or being "lazy." An honest discussion between the provider and you and your family is the best way to give your providers the information they need.
The Role of Family
The role your family will play in your life can vary among cultures. For example, home visits might be considered a convenience by people from European-American culture, but in other cultural contexts, home visits may be construed as an imposition, an invasion of the home environment.
Disability research has shown that many Latino and Asian clients receive assistance from family or extended family rather than relying on home health or other providers. Discuss with your family what it means to have a disability in your culture. Don't assume that services your providers consider "efficient" or "convenient" are right for you.
The Role of Spirituality
Spirituality should also be considered as a variable within a cultural context. Spirituality is an intensely personal topic that usually isn't discussed during in-patient rehabilitation. However, consideration should be given to how you experience your disability in relation to your spirituality.
More and more religious communities are reaching out to people with disabilities as part of their ministry. These groups often embrace the idea that God envisions a person with a disability as a whole person, rather than someone with limitations. They seek to minister to and learn from people with disabilities as they develop their faith and theological understanding. Our list of resources includes religious resources.
Although spirituality is often difficult to discuss, you need to address your spiritual needs, just as you need to address your physical needs. After a catastrophic injury, even the most religious individuals often question their faith, and some experience thoughts of suicide.
Your provider may feel that referrals to religious leaders (depending on your preference) are an appropriate component to rehabilitation. DISabilities Concerns has sponsored an excellent Web site for information about the spiritual care of people with disabilities.
You should be open to the idea of discussing the spiritual experience you are having as a result of your injury. And your treatment providers should try to understand your religious or spiritual background when making treatment decisions. Once again, European-American values might steer them toward treatment that conflicts with your cultural background.
Equal Access to Services?
It has been well documented that different socioeconomic groups receive different levels of access to services.
The United States is a class-driven society, where many believe that class is earned instead of being the result of societal structures and forces. Hence providers may not understand the barriers people face when they try to get services. You may be viewed as being resistant to help, when you actually just doubt the availability of the service.
A disproportionate number of people with disabilities live at or below the poverty line, and many minorities have limited access to medical care. In addition, some social service organizations are more likely to use control mechanisms in working with economically disadvantaged families. Substandard treatment for poor and non-white individuals can result.
Nevertheless, your health care practitioner should play the role of educator. It is important to educate all individuals about the services that are available in the community.
Tips for Practitioners
The following is food for thought…for the health care practitioner, the injured person, and the family.
When working with people who have disabilities, providers must examine their personal biases. Otherwise, unconscious prejudices can result in unprofessional behavior, such as unwarranted use of power or withholding of support. At the very least, prejudice can override or reframe the things really needed by the family.
To facilitate a client's recovery, a provider might need to confront the family's concerns about issues that have little to do with the disability itself. Such discussions can be an invaluable tool for learning about the client's familial and cultural systems, where they will live throughout their lifetime.
A fuller understanding of your client can be the first step toward truly assisting them to live the richest life possible.