James Schiller

Breaking the Barriers
Deaf culture has been vibrant throughout American society in the recent past. We have witnessed a Deaf woman win the Miss America Pageant, a Deaf Olympian from South Africa, and a Deaf actor on the West Wing.

Approximately 37 states have authorized high-school foreign language credit for students who take classes in American Sign Language, and we have seen countless universities do the same.

The employment of Deaf individuals takes place in almost every sector of American society. However, despite the advent of all these advancements toward social equality, the Deaf community continuously faces insurmountable barriers toward adequate mental health and substance abuse intervention.

In order to fully understand how such a vibrant population could face such barriers to prevention and treatment, at minimum one needs to understand the prevalence of deafness and the linguistic, cultural, and educational issues involved.

Definitions

Deafness: Deafness consists of a range of hearing impairment based on a scale including mild, moderate, severe, and profound hearing loss. In addition to a quantifiable measurement of hearing loss, a qualifying aspect of impairment is the reliance on manual communication.

Deaf Community: As used here in America, the term Deaf community refers to deaf and hard-of-hearing people (along with our families and friends) who use American Sign Language (ASL) and who are culturally Deaf.

Extended Deaf Community: The extended Deaf community refers to all Deaf people who embrace the aforementioned culture, especially the language, and the people with whom they regularly interact. For example, teachers of the Deaf, interpreters, social workers, religious workers, parents, siblings, etc.

Culturally Deaf: Those who are culturally Deaf do not look on Deafness as a disability. A capital D is used in the spelling of Deaf to signify the cultural identity attached to the condition. They consider Deafness a positive trait because it is tightly connected to other aspects of Deaf culture that they experience as positive. Being culturally Deaf means sharing the beliefs, norms, mores, fables, values, traditions, moral attitudes, manners, literature, art, and ways of the Deaf community.

Moreover, the sense of Deaf unity and community is strong. For example, Deaf victims of Hurricanes Katrina and Rita found support from Deaf families and schools for the Deaf from all over the country that offered places to stay while the victims plan to rebuild their lives. Moreover, the notion that Deafness excludes Deaf people from some aspects of hearing culture reinforces cohesion within the community. In fact, Deaf culture possesses every single aspect of culture that defines cultural minority groups.

Need for Accessible Services
Often when discussing the plight of this community, I am asked if there are enough members of the Deaf community to justify efforts toward solving the issues surrounding inaccessibility. And although there are vast regional differences in the distribution of the community, enough members of the Deaf community require services to warrant consideration toward establishing accessible clinical services.

Mental Health Problems
The U.S. Department of Health and Human Services (2002) found that the annual prevalence of mental disorders in the general population is 21%. If mental disorders occur as frequently in both the Deaf and hearing communities, we can estimate there are 2,100,000 Deaf individuals who need mental health treatment every year. At last count, approximately 39,000 identified Deaf youth (ages 1–18) received some form of education. The number of Deaf adults who rely on ASL for communication is far more difficult to ascertain.

Etiology
The etiology behind the hearing loss of the Deaf youth that we are aware of ranges from 21% genetic and 53 % unknown. Twenty-six percent have hearing loss from an etiology that places the youth at risk for other disabilities (Gallaudet Research Institute, January 2005).

Alcohol and Substance Abuse
Deaf people are assumed to experience at least the same degree of risk for developing alcohol and other substance-related problems as the hearing community. If that conservative assumption is true, there are 200,000 Deaf and 800,000 hard-of-hearing individuals with addictions in the U.S. (McCrone, 2003). However, some professionals and community members suggest that the risks for these communities are up to four times higher (Sales, 2000).

Dual Diagnoses
If the National Mental Health Association (2003) is correct in that the dual diagnosis of mental illness and addiction occurs with 29% of persons with mental illness, then according to McCrone (2003), we can estimate that at least 609,000 Deaf people in the U.S. have the dual diagnosis of mental illness and addiction.

The Challenge
Deaf individuals with mental illness or addiction to drugs and/or alcohol pose a unique challenge to substance abuse professionals, vocational rehabilitation counselors, mental health clinicians, social workers, school counselors, educators, and other professionals who have no understanding of how to recognize, assess, or treat such problems within this population.

Substance abuse in the Deaf community often remains hidden and underdiagnosed due to a lack of preparedness on part of the Deaf professionals for evaluating and treating problems related to mental illness and alcohol and drug abuse.

Furthermore, in spite of the passage of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990, detoxification and other standard treatment programs are often not accessible to Deaf individuals or other individuals with disabilities.

Deaf individuals continue to experience communication, cultural, attitudinal, and physical barriers that impede the successful completion of treatment programs. For example, Deaf individuals in need of treatment often report that they experience a lack of participation and benefit from treatment because of interpreters not being provided on a consistent basis.

Lack of Professional Certification for Interpreters
Many states do not yet require certification for interpreters in schools or treatment facilities. The use of interpreters is often cited as a remedy for the communication needs of the Deaf consumer.

However, interpreters, especially in the rural settings, are often themselves not accessible due to the high demand for their services across social service, medical, and educational domains. This situation is worsening as the use of Video Relay Services is becoming more popular and many interpreters, especially those in the rural setting, are leaving the community-based services to work for relay services. Consequently, there are simply not enough interpreters to be available for Deaf individuals to fully participate in mainstream social services and treatment programs.

Furthermore, many interpreters lack the skill and knowledge necessary to provide appropriate service within a treatment setting. Lastly, people with co-occurring disorders, as well as those with other complications, such as sexually transmitted infections, HIV/AIDS, and developmental disabilities, and others within the Deaf community remain largely unidentified and unserved. 

Communication Gaps
The majority of Deaf persons use American Sign Language (ASL) as their preferred and most skilled mode of communication. Most also use standard written English at a low level of proficiency. A few use some oral English via “speech reading” and vocalization.

ASL, a visually and spatially grounded language, does not provide a direct “translation” of English forms and the concepts represented by English vocabulary and syntax. Thus, knowledge about chemical dependency, mental illness, and HIV/AIDS is not communicated very well in the Deaf community because some key concepts and terms in chemical dependency treatment simply do not exist in Deaf culture (Modry, 1989).

Shortcomings exist as well for those individuals for whom the common language used in treatment settings is often and intermittently inaccessible to the Deaf individual due to poor acoustics and background noises. For many Deaf young people, particularly those who grow up in families and attend schools where their language isolates them from the “normal” flow of information, the availability of preventive knowledge is fragmentary and haphazard. Thus, materials and approaches to these topics, presented in ways that are readily processed by persons who use American Sign Language or who, because of hearing loss, read less proficiently than their age peers, are essential both as prevention and as treatment devices.

Often those without hearing loss are under the false impression that Deaf people can read lips and that hearing aids can restore hearing. Hearing-aid technology has advanced, but not to the point that one’s hearing can be fully restored. In fact, sometimes the additional stimulation can be bothersome and in many cases, individuals choose to turn the devices off in particular environments.

Lack of Professional Preparation
Very few professionals in helping roles are knowledgeable of the psychological, social, cultural, and linguistic dimensions of Deafness. Compounding the problem is the need for accessible professional training in mental health and substance abuse on the part of those professionals with the linguistic and cultural knowledge base to serve the Deaf consumer.

Service Limitations
Psychoeducational techniques are imbedded in most prevention and treatment curricula. Approximately, 83% of Deaf children are born to hearing parents (Gallaudet Research Institute, January 2005). Because of delayed language development, education is frequently delayed among Deaf children, extending to Deaf adolescents. Thus, very often the Deaf person enters some form of service provision ignorant about the terms of his or her own mental health condition and finds little assistance in services grounded in an equally problematic ignorance of how Deafness, chemical abuse, and mental illness interact.

Lastly, there have been several attempts at addressing the mental health and the substance abuse prevention and intervention needs of the Deaf population in the United States. Recently, licensed clinicians at Gallaudet University traveled to the Gulf Coast to provide mental health and case management services to the Deaf population struck by Hurricanes Katrina and Rita.

Currently, using video technology, we are attempting to provide brief counseling and case management from a central location on campus. The need for this intervention arises because of the lack of qualified personnel in that region. Imagine for a moment if such technology were not available.

Two agencies in Arizona, one for the hearing and one for the Deaf, have been successfully collaborating in offering Deaf adolescents substance abuse treatment. Unfortunately, to discuss all the programs that have been developed is simply beyond the scope of this introductory article.

The intention of this article is to provide a brief overview of the most salient issues impeding the delivery of adequate mental health and substance services to the Deaf community in the United States. My hope is that you found some of the information interesting enough to be motivated to visit your local social service agency for the Deaf and or any other Deaf-related program and determine what collaborative efforts may be possible.

For further insight into the principles and controversies faced by the Deaf community in a hearing society, please look up the video Sound and Fury at your local library. It is a wonderful story of a Deaf family who faced decisions as to whether or not their children would receive cochlear implants.

 References and Suggested Resources

Ancelin, C.  (1993). Accessibility issues for hard of hearing people in treatment and 12-step meetings. Proceedings of The Next Step: A National Conference Focusing on Issues Related to Substance Abuse in the Deaf and Hard of Hearing Population. Gallaudet University.

Dick, J. (1996). Signing for a high: A study of alcohol and drug use by deaf and hard of hearing adolescents. (Doctoral dissertation, Rutgers University, New Brunswick, 1996). Dissertation Abstracts International, 57(6A), 2675.

Gallaudet Research Institute. (2005, January). Regional and National Summary Report of Data from the 2003–2004 Annual Survey of Deaf and Hard of Hearing Children and Youth. Washington, DC: GRI, Gallaudet University.

Guthmann, D. (1996). An analysis of variables that impact treatment outcomes of chemically dependent deaf and hard of hearing individuals. (Doctoral dissertation, University of Minnesota, Minneapolis, 1996). Dissertations Abstracts International, 56(7A), 2638.

Kearns, G. (1989, April). A community of underserved alcoholics. Alcohol Health and Research World, 27.

Lane, K. (1989, April). Substance abuse among the deaf population: An overview of current strategies, programs, and barriers to recovery. Journal of American Deafness and Rehabilitation Association, 2(4), 79–85.

McCrone, W.P. (1994). A two-year report card on Title I of the Americans With Disabilities Act: Implications for rehabilitation counseling with deaf people.  Journal of American Deafness and Rehabilitation Association, 28(2), 1–20.

McCrone, W.P. (2003, Summer). Alcohol and drug abuse prevention with deaf and hard of hearing children: A counselor’s perspective. Endeavor, 8–13.

Modry, J. (1989). Growing up in two cultures. Unpublished manuscript.
National Institute on Drug Abuse. (1997). Preventing drug abuse among children and adolescents. Washington, DC: Author.

National Mental Health Association (2003, April 30). Dual diagnosis. Retrieved September 9, 2004 from www.nmha.org/infoctr/factsheets/03.cfm

Robert Wood Johnson Foundation. (1993). Substance abuse: The nation’s number one health problem. Princeton, NJ: Brandeis University Institute for Health Policy.

RRTC on Drugs and Disability. (1999). Double Jeopardy: HIV and Disability.  Dayton, OH: Wright State University, Author. Retrieved [date?] from http://www.med.wright.edu/citar/sardi/publications.html 

Sabin, N.  (1988, July).  Responses of deaf high school students to an “Attitudes Toward Alcohol” scale: A national survey. American Annals of the Deaf, 133(3), 199–203.

Sales, A. (2000). Substance abuse and counseling. Philadelphia: CAPS Publication.

Scanlon, J.  (1983). Is there a need for mental health and substance abuse services to deaf people? Readings in Deafness: Mental Health Substance Abuse and Deafness. American Deafness and Rehabilitation Association. Monograph No. 7.

Van Biema, D. (1994, April). AIDS. Time Magazine, 76–77.

Wentzer, C., & Dhir, A. (1984). An outline for working with the hearing impaired in an inpatient substance abuse treatment program. Journal of Rehabilitation of the Deaf, 18(2), 20–23.

Wentzer, C., & Dhir, A. (1986). An outline for working with the hearing impaired in an inpatient substance abuse treatment program. 10(2), 11–16.

Whitehouse, A., Sherman, R., & Kozlowski, K. (1991). The needs of deaf substance abusers in Illinois. American Journal of Drug and Alcohol Abuse, 17(1), 103–113.