Deaf Culture and Substance Abuse
Suppose you had to use flashing lights or stomp
on the floor to get another persons attention. Consider
a language that incorporates the use of non-verbal communication
which includes an emphasis on facial expressions, is highly
visual and has a grammatical structure distinct from the English
language.
These are all aspects of a culture which has
worked its way steadily to the forefront, especially in the
past ten years. Several events fueled this emergence of Deaf
Culture including the following: the enactment of the Americans
with Disabilities Act; the awarding of an Academy Award to
Marlee Maitlin, a deaf actress for her role in "Children
of a Lesser God"; and the protest of students at Gallaudet
University (the worlds only liberal arts college for
the deaf) resulting in the selection of a deaf University
President over a previously appointed hearing individual.
Like other cultural groups, deaf people share experiences,
a history and language. In fact, at the heart of Deaf Culture
is the pride in American Sign Language (ASL), which is a complete
natural visual language, quite independent of English with
its own set of grammatical rules and used daily by more than
half a million Americans.
The recognition and understanding of substance
abuse within the Deaf Community significantly lags behind
the hearing community. There is a strong discomfort in discussing
the topic and a negative stigma attached to those that may
be identified as having a substance abuse problem. There is
also denial of the abusive use of alcohol and other drugs
within the Deaf Community. Little research has been done to
accurately identify the level of substance abuse among deaf
people. Research methods developed to gather this information
in hearing communities are often ineffective among deaf people
for a variety of reasons which include: distrust of predominantly
hearing researchers; fear of ostracism and labeling; and the
inaccessibility of assessment instruments due to language
limitations.
Considering the few studies that have been done,
it appears that substance abuse is a problem in the Deaf Community.
Dr. William Mc Crone (1994), projects that there are approximately
5,105 deaf crack users, 3,505 deaf heroin users, 31,915 deaf
cocaine users and 97,745 deaf marijuana users in the U.S.
today. The National Council on Alcoholism suggests that at
least 600,000 individuals experience both alcoholism and hearing
loss (Kearns, 1989). Most professionals familiar with substance
abuse and deafness identify a level of substance abuse that
is at least equal to the traditional field estimate of eight
to ten percent in the general population (Grant, et al, 1988).
Deaf people present a challenge in terms of the provision
of alcohol and other drug treatment services due to their
unique cultural profile and numerous communication and accessibility
issues. This may be evidenced by the low level of utilization
of treatment services by deaf people. Robert Wood Johnson
Foundation (1993) estimates more that 800,000 people in alcohol
and drug abuse treatment at any given time. Based on one half
of one percent of the population represented by deaf people,
there should be 4,000 deaf and hard of hearing people in treatment.
No evidence of this level of treatment service for deaf people
is seen at the present time.
Deafness as a Barrier to Treatment and Recovery
Imagine yourself in another country, unable
to speak or read the language and in need of substance abuse
treatment. Upon admission to a treatment program, all counseling
would be provided in that foreign language and you would have
no interpreter. What feelings would you experience? What barriers
would you face? How likely would you be to have a successful
treatment experience? This scenario is comparable to the situation
that deaf and hard of hearing people face when trying to access
substance abuse treatment services.
Communication barriers often exist in family
systems with a deaf member since ninety percent of all parents
of deaf children are hearing (Schein, 1974). Poor communication
between parent and child is often a valid predictor of substance
abuse (Babst et. al., 1976; Carter, 1983). Deaf people are
unlike any other ethnic group because parents and children
are likely to identify with two different cultures (Dolnick,
1993). Many parents of deaf children learn only minimal sign
language which is inadequate communication for educating their
children about alcohol and other drugs. The tendency of family
members, friends and even professionals to take care of and
protect deaf and hard of hearing individuals often exacerbates
the chemical dependency issues. This may result in the deaf
or hard of hearing person not being held accountable for his/her
behaviors.
Comprehensive substance abuse prevention programs
were implemented in many public schools for hearing students
more than a decade ago. However, many deaf people have not
had access to the increasing volume and quality of prevention
programs provided to their hearing counterparts. School based
prevention programs and public service announcements generally
do not provide communication access to deaf persons. Many
young deaf people are ill-prepared to deal with the pressures
by peers and other individuals to use mood altering chemicals.
As a result of the lack of information and education, deaf
and hard of hearing individuals may not be well informed about
the risks of using alcohol and other drugs, about addiction,
or treatment and various recovery programs such as Alcoholics
Anonymous, Alateen and Alanon.
Assessment of substance abuse problems when
working with deaf and hard of hearing individuals also presents
difficulties since there are no formalized assessment tools
normed or specifically designed to use with this population.
Additionally, most assessors are unfamiliar with how to work
with deaf people and are even less likely to be fluent in
American Sign Language. Those who have some awareness of the
needs of deaf people, may attempt to utilize a sign language
interpreter for the assessment process. Although this may
be a satisfactory accommodation, problems of interpreter availability,
interpreter qualifications and the complication of a third
party in the assessment interview raise additional concerns
about the validity of the assessment. Also, many deaf people
may be unfamiliar with the terminology used by assessors and
may be hesitant to ask for clarification resulting in an inaccurate
depiction of the deaf individuals needs for chemical
dependency services. For example, a typical question may deal
with the experience of a "black out" which is a
significant diagnostic feature of chemical dependency. In
assessing a deaf client, the interviewer may need to explain
the phenomenon in addition to (or instead of) using the term
"blackout". The interviewer who fails to explain
concepts and/or vocabulary that may be unfamiliar, risks compromising
the validity of the assessment (Guthmann & Sandberg, 1995).
The use of self-report paper-and-pen or computerized tools,
both heavily dependent on knowledge of English language, are
also inappropriate for a population for whom English is not
their first language. All of these factors lead to a high
possibility for inaccurate assessment data.
A deaf individual who is placed in a treatment
facility for hearing people is usually given sporadic opportunities
for communication contingent on interpreter availability and
funding. An interpreter may be provided on a limited basis
for groups or other specific activities. The absence of an
interpreter precludes deaf patients having equal access to
staff and severely restricts interactions with other clients.
The deaf person often misses out on much of the communication
between peers that frequently occurs during unstructured times.
Such interactions are a key part of the treatment process.
The majority of treatment programs that are designed to work
with hearing individuals have a heavy emphasis on tasks that
focus on reading and writing skills. Since American Sign Language
is a highly visual language, approaches in treatment need
to use creative visual approaches to be successful with this
population.
The optimal placement for deaf individuals should
include specialized services such as: adapted therapeutic
approaches, staff fluent in American Sign Language, recovering
deaf role models, technology support such as TTYs (which
allow deaf people to communicate on the telephone), assistive
listening devices, flashing light signals, decoders and captioned
video materials. Good communication is essential in the educational,
therapeutic and peer interactions dimensions of a well-designed
program.
Even for those deaf people who are able to find
and complete treatment, barriers remain in their ongoing recovery.
In most locations, few resources such as counseling, outpatient
services or support groups are accessible to deaf persons.
Even Alcoholics Anonymous and other Twelve Step groups, the
mainstay of recovery for many hearing people, face challenges
in being accessible to deaf people. Twelve Step sponsors who
provide mentoring and support for those new to recovery are
seldom able to effectively communicate with deaf recovering
people. Within the group of recovering persons, few deaf role
models are available to support those who are new to recovery.
A common suggestion in recovery is to avoid old acquaintances
and environments associated with chemical use. Most hearing
people in recovery have choices and options of places to go
and people to see. They can realistically develop new friendships
in the recovering community. In contrast, many deaf people
in recovery are isolated and have a limited circle of sober,
deaf friends.
The challenges are numerous and difficult, but
growing numbers of deaf and hard of hearing people are finding
their way to treatment and practicing the principles of recovery.
This is due in part to specialized programs like the Minnesota
Chemical Dependency Program for Deaf and Hard of Hearing Individuals,
a program of Fairview Recovery Services.
A Model Program
The Minnesota Chemical Dependency Program for
Deaf and Hard of Hearing Individuals (MCDPDHHI) is a specialized
program designed to meet the communication and cultural needs
of deaf and hard of hearing persons in chemical dependency
treatment. The Program is comprised of a highly trained staff
who provide a full range of treatment services. Staff are
fluent in sign languages as well as knowledgeable about and
sensitive to Deaf Culture. Program offerings include individual
and group therapy, educational offerings, spirituality group,
grief group, recreational therapy, mens/womens
groups, participation in accessible Twelve Step groups, comprehensive
assessment services and aftercare planning.
The Program operates on a Twelve Step philosophy
using treatment approaches that are modified to respect the
linguistic and cultural needs of the clients. As opposed to
the traditional emphasis on reading and writing, clients are
encouraged to use a variety of methods including the use of
drawing, role play, and communication using a variety of sign
language systems. Any written material used in the Program
is modified and video materials are developed and presented
using sign language, voice and captioning. TTYs, assistive
listening devices, flashing light signals, decoders and other
technology help to make the treatment setting accessible to
deaf and hard of hearing clients.
Phase I: Evaluation/Assessment
At the MCDPDHHI, treatment is provided in three phases. Phase
I is the evaluation/assessment phase in which information
about the client is gathered. The assessment includes data
on the clients medical background, a social history,
a chemical use history, a clinical assessment and a communication
assessment. The communication assessment is an important tool
which profiles a clients communication needs and facilitates
the provision of treatment and support using the clients
preferred method of communication. During Phase I, clients
also complete a drug chart assignment providing information
about the different drugs they have used, a description of
their last use and examples of consequences of their use in
major life areas such as physical health, legal, family, social,
work/school and financial. With few exceptions, drug chart
work and many other assignments are done through drawing.
The use of drawing removes the barrier created for many deaf
people by the English language. It also encourages clients
to be in touch with their experiences and, as a result, to
be more in touch with the feelings connected to those experiences.
Each completed assignment is shared with peers and staff in
a group setting, most often using American Sign Language.
Phase II: Primary Treatment During the
primary treatment phase, clients receive education about the
Twelve Steps and work toward completing assignments related
to Steps One through Five. The goal of this phase is for clients
to integrate the concepts of the Twelve Steps into their recovery
and is more important than the number of Steps completed.
The typical Step work assignments used by programs for hearing
persons have been modified to meet the needs of the clients
at the MCDPDHHI. Rationale developed by the treatment staff
for various portions of step assignments help to identify
the objectives of each assignment and determine if the client
has met the objective.
Beginning in Phase I and continuing throughout
treatment, clients are provided information about the programs
of AA, NA and other Twelve Step groups as well as the opportunity
to be involved in these meetings. A family week experience
is provided for clients and their families as appropriate
whenever possible. Such an experience is often the first time
many families are able to explore issues related to alcohol
and drug use and its impact on the family. If family members
are unable to attend, materials, referral to other resources
and phone contact with staff is available to all family members.
The MCDPDHHI uses a behavioral approach with
clients which includes education and support designed to help
individuals identify and correct self-defeating behaviors.
Intervention efforts are matched to behaviors of concern.
An initial intervention would typically be a one-to-one discussion
with the counselor which often helps the client recognize
and change the behavior. If the behavior continues or becomes
worse, a behavior contract might be an appropriate second-level
intervention.
Behavior contracts may be utilized for incidents
such as: the violation of unit rules, arguing about staff
directives, failure to complete work on time, failure to focus
on treatment or focusing on the needs and/or issues of other
patients. Behavior contracts specify the behaviors for which
they are given as well as the changes that are expected.
Another behavior management technique is the
probation contract. Probation contracts may be used to help
a client recognize behaviors which seriously threaten the
success or quality of his/her treatment experience. It is
used as a follow up to a behavior contract in the event that
the client does not respond positively or is openly defiant
to the terms of a behavior contract. Probation contracts also
specify expected changes in the clients behavior, and
may include an assignment which helps the client identify
and change his/her behavior. Failure to adhere to the probation
contract may result in the client being asked to leave the
Program.
Phase III: Aftercare/Extended Care Phase
III is focused on aftercare planning and services. For clients
who come from outside of Minnesota, staff members attempt
to set up a comprehensive aftercare program in the clients
home area including offering education and support to services
providers there. For local clients, the Program offers individual
aftercare sessions and connects clients to other local resources
such as Twelve Step meetings, a Relapse Prevention group,
therapists fluent in American Sign Language, an interpreter
referral center, vocational assistance, halfway houses, sober
houses and other sources that provide assistance and support.
Networking with other service providers both locally and nationally
is an important activity related to aftercare. Aftercare for
clients residing outside of Minnesota continues to be a challenge.
Few Twelve Step meetings provide interpreters. Shortages of
professionals trained to work in this discipline exist on
a national basis. Developing an aftercare plan for out of
state clients might be compared to putting together a puzzle--sometimes
with many of the pieces missing.
Relapse prevention may be addressed in primary
treatment, or in a later stage of treatment such as aftercare.
It is important to understand that relapse is a process of
changing behaviors that culminates in the return to mood altering
chemicals. Clients are offered information about warning signs
of relapse in terms of feelings, behaviors or environment.
Clients are taught to recognize and respond to warning signs
in ways that are likely to support ongoing sobriety.
Final Comments
The number of services emerging to meet the
needs of deaf substance abusers is increasing. Existing resources
are gradually attempting to make their services accessible
to deaf people. Prevention and education programs especially
for deaf people are becoming available but more work is needed.
Ideally, individuals who successfully complete
an alcohol/drug treatment program should be able to return
to their home area. However, that environment must provide
a sober living option, family/friend support, professionals
trained to work with clients on aftercare issues and accessible
Twelve Step meetings. The exact prevalence of substance abuse
within the Deaf Community remains unresearched. Risk factors
that are linked to the development of chemical dependency
in deaf people are still open to much speculation. What is
known is that deaf people face many barriers in learning about
and seeking help for substance abuse problems. The need for
ongoing research and improvements in substance abuse services
is clear. We will not fairly measure the risk factors of deaf
and hard of hearing individuals becoming chemically dependent
until they receive the same consideration as hearing persons
in regard to prevention, intervention, accessible treatment
and adequate aftercare.
The story of a young woman named Jane provides
an example of the roadblocks and triumphs chemically dependent
deaf people experience. Jane is profoundly deaf. She began
using alcohol and other drugs at the age of twelve when her
parents divorced. From that time on, Jane used alcohol, marijuana,
LSD, cocaine, crack and anything else she could find. She
knew that without help, she would end up in a mental hospital,
in prison or dead. She attempted treatment at two programs
designed for hearing people. Even though those programs provided
sign language interpreters for lectures, groups and therapy
sessions, they really didnt seem effective. She admitted
that she used her deafness as a way to avoid painful or unpleasant
therapeutic situations. Finally, a counselor at the residential
school she attended found out about the Minnesota Chemical
Dependency Program for Deaf and Hard of Hearing Individuals
and made the referral to the Program. Initially, Jane tried
the same techniques she had used before to avoid full participation
in the program, but found that they didnt work very
well. Instead of being able to use her deafness as an excuse,
she was challenged by counselors and peers who could communicate
and could relate to her as a deaf person. She was able to
participate in groups consisting of other deaf and hard of
hearing addicts with whom she could share language, culture
and experiences. She finally let her guard down and successfully
completed treatment.
Now, four years later, Jane is back at the Program---this
time as a chemical dependency counselor taking it one day
at a time. But challenges remain for Jane and others like
her which means it is imperative to continue educating professionals
in the field of chemical dependency about the importance of
making the continuum of services accessible to deaf and hard
of hearing people.
References
Babst, D., Miran, J. And Koval, M. (1976). The
relationship between friends marijuana use, family cohesion,
school interest and drug abuse. Alcohol Health and Research
World. 91, 23-41.
Carter, D. (1983, October 24). Why do kids use
drugs and alcohol, and how do we help themstop? PTA Today.
15-18.
Dolnick, E. (1993, September). Deafness as culture.
The Atlantic Monthly. Pp. 37-51.
Grant, B.F.; Harford, T.C.; Chou, P.; Pickering,
R.; Dawson, D.A.; Stinson, F.S.; and Noble, J. Epidemiologic
Bulletin No. 27: Prevalence of DSM-IIIR alcohol abuse and
dependence: United States, 1988. Alcohol Health Research
World. 15(1)91-96, 1991.
Guthmann, D. And Sandberg, K. (1995). Clinical
approaches in substance abuse treatment for use with deaf
and hard of hearing adolescents. Journal of Child and Adolescent
Substance Abuse. Vol. 4(3)69-79.
Kearns, G. (1989, April). A community of underserved
alcoholics. Alcohol Health and Research World. P. 27.
Minnesota Chemical Dependency Program for Deaf
and Hard of Hearing Individuals (1994). Clinical Approaches:
A Model for Treating Chemically Dependent Deaf and Hard of
Hearing Individuals.
McCrone, W. (1994, Fall). A two year report
card on Title I of the Americans with DisabilitiesAct. Implications
for rehabilitation counseling with deaf people. Journal
of AmericanDeafness and Rehabilitation Association. 28(2),
1-20.
Robert Wood Johnson Foundation. (1993). Substance
abuse: The nations number one health problem. Princeton,
New Jersey: Brandeis University Institute for Health Policy.
p. 61.
Schein, J. and Delk, M. (1974). The Deaf
Population of the United States. National Association
of the Deaf, Silver Springs, Maryland.
Better Service Provision for Deaf and Hard
of Hearing Clients
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Use a qualified interpreter. If you
are not fluent in sign language, always use a qualified
interpreter for assessment, evaluation or counseling related
to substance abuse services. A qualified interpreter means
someone who is trained, certified by the Registry of Interpreters
for the Deaf or the National Association of the Deaf and
who is familiar with vocabulary and concepts related to
substance abuse.
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Use local deafness resources. Access
information from local resources about agencies in your
area that serve deaf and hard of hearing persons.
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Training. Take advantage of training
opportunities to learn more about the needs of deaf and
hard of hearing people in relation to substance abuse.
Provide training opportunities for deaf and hard of hearing
persons who want to work in the substance abuse field.
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Know and communicate. Be aware of
the special needs of deaf and hard of hearing persons
who need to access services in the substance abuse continuum
of care. Accessible meetings, captioned video materials
and the provision of interpreter services can help deaf
and hard of hearing people access crucial aftercare services.
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Support. Support the provision of
funds that support special programming for deaf and hard
of hearing persons.
-
Phone access. Be aware that any agency
attempting to work with deaf and hard of hearing persons
should be accessible by TTY. Agencies should purchase
or lease TTY equipment and see that staff members are
trained in appropriate use of the equipment.
-
Refer. Using the principles of cross-cultural
counseling, be sure to refer deaf and hard of hearing
persons to qualified professionals or agencies if you
are not able to meet their communication and cultural
needs.
Minnesota Chemical Dependency Program
for Deaf and Hard of Hearing Individuals is a
part of Fairview Recovery Services located at 2450 Riverside
Avenue, Minneapolis, Minnesota.
The Program can be contacted by calling
1-800-282-3323 (V/TTY)
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