Reaching
the "Invisible Population": Enhancing Vocational Rehabilitation
and Disability Support Services to Hard of Hearing College Students
John
Schroedel, Carol Kelley, & Patty Conway
4/10/03
Abstract
The objectives
of this paper are to define and exemplify some possible solutions
to the multifaceted problems involved in improving VR and campus
services to students who are hard of hearing. Barriers to delivering
these services, rooted in attitudes and behaviors of persons who
are hard of hearing or hearing, are examined. Case histories are
presented to demonstrate how hard of hearing students succeed
in college with the assistance of specialized staff. Exemplary
ideas are discussed to enhance how to: (1) identify changes needed
in VR or Disabled Student Services (DSS) programs, (2) recruit
students and facilitate their transition into college, (3) help
students overcome resisting acceptance of their hearing loss,
and (4) promote college persistence. Extensive comments made by
session participants are presented and summarized.
How Many
College Students have a Hearing Loss?
John:
An important first step is to estimate the number of deaf and
hard of hearing students attending the nation's 5,000 colleges
and universities. This is essential because a director of any
program needs an accurate assessment of its target population
for budgeting, staffing, and services. During the past ten years
four national surveys of college administrators, including those
experienced with students with disabilities, reported between
20,000 and 28,000 such students on their campuses. However, a
very different number results when students with hearing loss
are asked directly. In 1990, a national survey of college students
about federal financial aid led to an estimate of 258,000 deaf
and hard of hearing college students. This is a surprising figure
from a group of people who usually do not reveal their hearing
loss. The Research and Training Center at the University of Arkansas
estimated 468,000 college students with a hearing loss were enrolled
during 2000 (Schroedel, Watson, & Ashmore, 2003). Among these
468,000, 345,000 were hard of hearing, 115,000 deafened after
age 19, and 8,000 deafened before age 19 including 2,500 at Gallaudet
University and NTID at RIT. This estimate of 468,000 students
was projected from prevalence rates derived from the most reliable
national demographic study available (Ries, 1994). It is important
to clearly define estimated groups. This report defined deaf people
as those who cannot hear and understand speech and hard of hearing
people as those who have difficulty hearing and understanding
speech.
Audience:
Was that with or without a hearing aid?
John:
Without use of hearing aids.
Audience:
I do not feel good about that.
John:
The 1994 demographic report was based upon scales developed during
the 1960s to assess hearing loss during household interviews.
That history does not take into account the rapid development
of the sophisticated technology in present hearing aids. So maybe
the scales need to be revised, however, the definition of the
two groups with hearing loss makes sense. Note that these demographic-based
definitions are dissimilar to those used by vocational rehabilitation
and special education professionals.
One may
think that 468,000 is a big figure, however, this is only 3% of
15 million students attending 5,000 colleges. A key question is:
why the large discrepancy between the estimated 28,000 students
from a survey of college administrators and the estimated population
of 468,000? The most likely answer is that most hard of hearing
students are not requesting campus and VR services. That is the
best explanation available for this massive discrepancy.
Furthermore,
other surveys show that most college-aged hard of hearing persons
have a mild loss. From a VR perspective it would be presumptuous
to say such a person does not have a disability and is ineligible
for services. By contrast, consider that a person with a slight
hearing loss may have emotional-psychological difficulties or
other functional limitations interfering with doing well in life.
Part of the problem is that the field lacks accurate assessment
measures of the actual functional capacities of people who are
hard of hearing. Furthermore, among college-aged persons (18-34)
only 5% use hearing aids, whereas the other 95% could benefit
from hearing instruments (Schroedel, Kelley, & Conway, 2002).
The fact that only 5% use hearing aids suggests many are not accepting
their hearing loss.
The Social
Psychology of Being Hard of Hearing
There
is a need to address some of the social-psychological issues faced
by hard of hearing people. In the attached Figure the black boxes
refer to hearing persons and the white boxes refer to hard of
hearing persons. This Figure represents a model of the attitudes
and behaviors many persons who are hard of hearing or hearing
display in response to hearing loss. Stigmatizing means assigning
a negative attitude to hearing loss and the Figure includes a
self-fulfilling prophecy. A step-by-step explanation of the model
follows. When a hard of hearing person hears incorrectly, misunderstanding
can occur, and this person acts inappropriately. Then hearing
persons may say, "That's stupid." This ridicule reduces
the hard of hearing person's self-esteem, may lead to social withdrawal,
and, in turn, to potential underachievement. Then hearing persons
may say, "See, I told you he couldn't do it." This viscous
cycle ends in this self-fulfilling prophecy. The question remains:
how frequently do these attitudes and behaviors take place? It
is important to add that some hard of hearing individuals act
as shown in the Figure and others do not. We do not want to create
stereotypes.
Individuals
who are hard of hearing use different styles to cope with these
attitudes and behaviors. Some proactive coping styles include
being assertive and working harder than others (overcompensating).
More frequently, however, the professional literature reports
reactive coping styles characterized by varying degrees of denial,
pretense, bluffing, deception, limited interaction, and withdrawal.
As a hard of hearing person I behave like this. You can find other
hard of hearing people whom have behaved similarly. By contrast,
there are hard of hearing people who react positively to negative
circumstances by assertiveness or overcompensating. Support for
this model comes from interview and focus group research studies
with hard of hearing and late-deafened workers. However, other
research has ascertained negative attitudes toward some attributes
of hearing loss among college students who hear. Therefore, the
psychosocial adjustment experiences of hard of hearing workers
and hard of hearing college students can be generally similar.
Barriers
to Services
These
conditions converge to form barriers to accessing and enhancing
VR and DDS services.
- One barrier is
that the diverse effects of their hearing loss confuse many
students. For example, with my new hearing aids I understand
better in small quiet rooms, but have many difficulties understanding
conversations outside buildings. Furthermore, if a person
has a soft quiet voice, I am lost in a one-to-one conversation.
I usually avoid group conversations. Many hard of hearing
people do not fully realize how these frequent and subtle
environmental differences impact their ability to hear and
understand others. It can be confusing even with hearing aids.
- A second barrier
is most hard of hearing people lack hard of hearing peers.
If two hard of hearing people meet, they rarely would talk
about their hearing loss. This is among the reasons why many
hard of hearing people lack meaningful self-identification.
If they ask, "Who am I?" Most would answer: "I
am hearing." Naturally, it is understandable that most
have no other viable social identity. By contrast, most signing
Deaf people lack these kinds of social-psychological problems.
Subsequently, we are talking about two very different groups
of people. In addition, most late-deafened individuals are
more similar to hard of hearing persons than to Deaf people.
- Furthermore, most
professionals lack specialized training on issues related
to better serving hard of hearing persons. Many do not understand
the attitudes and behaviors associated with being hard of
hearing. Both service professionals and hard of hearing students
share the problem of a wide paucity of useful information.
Training packages for professionals are obsolete. These were
among the factors that motivated us to put this presentation
together. The Council of State Administrators of Vocational
Rehabilitation has a subcommittee endeavoring to improve training
for VR counselors serving hard of hearing adults.
Exemplary
Case Histories
To place
these issues in more personalized perspectives, case histories
of four hard of hearing college students are presented.
Gina:
High school staff encouraged her to use various communication
devices. But even with a moderate to severe hearing loss she did
not use her hearing aids because of auditory feedback and the
ear molds made her uncomfortable. As a high school senior, she
wanted to go to a small private college. She told her VR counselor
that she often misunderstood conversations on the phone and in
groups. She tried an assistive listening device (ALD) and did
not like it. She was diagnosed with a learning disability and
lower academic skills. Even though she disliked behind-the-ear
(BTE) aids, the audiologist put a BTE aid in one ear and an in-the-ear
aid in the other. Professionals realize that most BTE aids have
more auditory power than smaller in-the-ear aids. Regardless,
Gina missed much in class discussions, replied inappropriately,
and sometimes bluffed. She did well in remedial classes and hoped
to go to a four-year college to become a mental health counselor
for people with hearing loss.
Debbie:
As a college freshman Deb was referred to DVR by the Disabled
Student Services unit. She has a profound loss in one ear and
a mild loss in the other ear, which exemplifies the unique problems
of uneven hearing loss in each ear. Debbie did not use hearing
aids. During her communication assessment given by VR staff she
could not identify many problems related to her hearing loss.
The VR counselor worked with her to try new hearing aids with
telecoils (for a phone attachment). She was instructed about ALDs
and reconnecting with the DSS unit. At first she used an ALD in
lecture classes, but not in discussion classes. One professor
used the ALD, but did not turn it on, and gave Debbie a D. Debbie
now uses hearing aids, various devices, oral interpreters, and
has a 2.0 GPA Her career goal was to become a meteorologist
Carol:
The names linked with all presented case histories are fictitious
The first two cases emphasized more about VR services. I will
approach the next two cases more from the perspective of postsecondary
support services. These students attended a community college
with a special program for students who are deaf or hard of hearing.
This may differ from your professional situation, but we hope
that you will gain some helpful ideas and suggest to us on how
to improve the solutions to problems we will offer later in this
paper.
Dale:
Dale has a moderate hearing loss and his dad is also hard of hearing.
He was referred to DSS by vocational rehabilitation. He had to
take an adult basic education test in order to enter college.
Dale was very unhappy about being scheduled to do this with a
group of signing deaf students. VR personnel were aware of his
denying his hearing loss and referred him to a summer transition
program. At first he was very uncomfortable with the signing between
deaf and hard of hearing students. He soon warmed up after he
met some hard of hearing students who did not sign, but still
did not feel very comfortable. In the fall he selected a non-signing
hard of hearing student as a roommate. During the orientation
program, he was disinterested in ALDs and oral interpreting. All
he wanted was a note taker. Moreover, he did not want anyone in
the classroom knowing whom that note taker was assisting. Not
surprisingly, by midterm he was not doing very well and he went
to see the DSS counselor. Dale decided to try an oral interpreter
because he wanted to be successful. That helped some in the beginning
courses. He also stated, "I missed a lot when I was in high
school and I am upset because I was not then provided these services."
This was probably the first step he took toward resolving his
denial. He still is not there yet, but he has progressed. He had
a counselor who was positive, patient, reassuring, and did not
push him. VR approved his request to change his major. However,
this new major was more academically demanding and at midterm
again he was having problems. The DSS counselor asked if he would
try C-Print. He did, liked it very much, and requested it until
he graduated. He is still uncomfortable with other people knowing
he is hard of hearing, but I think he has come a long way. He
worked with his VR and DSS counselors to transfer to a four-year
university to major in electronics.
Phil: Phil had a moderate to severe hearing loss and attended
public elementary and middle schools. Then his parents moved to
a city that has a school for deaf students where he completed
high school. He learned to sign, but was never integrated fully
into the Deaf culture. Later he attended a college with limited
accommodations and withdrew. After working on several dead-end
jobs he went back to his vocational rehabilitation counselor who
referred him to an out-of-state college with a special program
for students with hearing loss. This led to some problems. Being
more mature and older, he felt that he did not fit in very well
with younger students just entering college. Subsequently, he
did not have many friends and was very lonely. The counselor got
him involved in intramural sports and computers that became his
niches. His interpersonal skills were enhanced by working in the
DSS office, being a big brother to a hard of hearing student,
working with new hard of hearing students in the summer transition
program, and developing friendships with some students who hear.
When he began college, he was placed in remedial classes in English,
reading, and math. He also took one computer course. He did excellently
in his reading, math, and computer courses, but English was another
story. He had to take second level English three times before
he could enter English composition, which delayed his graduation.
This made him very frustrated, but the counselor helped him learn
how to deal with his feelings. Because of his determination, his
persistence, and help from his instructors, tutors, and counselors,
he completed an associate of science degree in microcomputer information
processing.
Audience: Did he use hearing aids or other technology?
Carol:
He had hearing aids and tried a FM system. In college VR usually
takes care of those matters, so unless they ask us, we do not
get involved with hearing aids. It is really difficult to get
hard of hearing college students to try different accommodations.
At that time we did not have C-Print operators, but Phil did get
through.
Audience:
Why is it hard? When my students at the University of New Mexico
get their hands on a FM system, they love them.
Carol:
Does anybody else have problems with their students using such
accommodations?
Audience: It depends on the student. I have two hard of hearing
students who do not acknowledge their hearing loss and would never
use a FM device.
Audience (clarification): She has three students. One will use
the FM system. The other two will not. They are still in denial
and do not want to use the FM system.
Carol:
Phil really wanted to be hearing. He did not want to use visible
accommodations. We do not push the students about those issues,
because it is their choice whether they want to use ALDs. We make
them available, but if they do not want them, we do not pursue
the matter. However, Phil achieved his goal and VR helped to place
him on a job working with computers in a state Division of Motor
Vehicles where he is working still today. I visited him once and
he is doing really well.
Observations
from Four Cases
There
were some observations we noted when we looked at these four students.
- First, terms used
to describe their severity of hearing loss ranged from mild
to severe. Next, I am going to ask you to identify what you
observed these students initially avoided.
Audience: Interpreters.
Carol: Anything else?
Audience: ALDs.
Audience: I have students that avoid informing the professors.
Audience: Yeah, they even avoided the professors most of the
time.
Audience: If they misunderstood something in the classroom,
they still would not try to obtain the knowledge by using
other methods of communication.
Carol: Let me summarize the overhead so you can see how close
you got to what we observed.
- They initially
avoided deaf students and sign language. Some changed as they
went along.
- They did not want
you to be able to see their hearing aid. Some did not want
anybody knowing that they were getting accommodations.
- They did not want
much to do with K-12 schools, VR programs, and colleges serving
deaf students.
- All these behaviors
reflected negative attitudes they had learned and self-denial
of their hearing loss as mirrored in the previously presented
Figure.
- Carol: VR and
DSS professionals acted to help these students to effectively
deal with these problems. What were some of the ways VR and
DSS personnel helped them? Anyone remember anything?
Audience: Offered accommodations.
Carol: Yes, they offered the accommodations. DSS staff did
not force accommodations and some students accepted them and
others did not. They accepted hearing aids through the assistance
of either VR or DSS or both.
- They accepted
assessments. Remember Debbie went through the communication
assessment to learn what problems she was having. She was
not really aware of those problems, but after the assessment
she was able to identify them better.
- They got help
for coping with the emotional side of their hearing loss and
becoming socially active.
Audience:
On your last overhead where you observed about the students. Would
not the last two items, coping with the reaction to being hard
of hearing and developing social activities, come before accepting
hearing aids? It would seem to me that it would be really difficult
for a person to be aware of hearing aids unless you first dealt
with the psychological side. You talked a bit about the student
who was having trouble with his English writing. As a counselor
it seems to me you have to deal with the emotional and acceptance
sides before you can move onto the technological side.
Carol:
You are very correct. However, we did not put these observations
in any type of order. We just listed some identified problems.
You are very right that until they start working through denial
and becoming active and involved, you cannot really make other
progress.
Audience:
I wonder how did the DSS professionals accomplish that?
Carol:
How did the DSS professionals accomplish these changes? These
students became successful cases. We excluded, for example, the
ones that withdrew after they twice failed English. It has to
be students that wanted to succeed, then you can work with them.
We also wanted to demonstrate effective professional interventions.
Audience:
I was wondering about the methods that you used such as one-on-one
mentoring?
Carol:
She was wondering about the methods that DSS personnel used in
getting students to accept the various changes that we have on
the overhead. We shortly will describe more solutions to the problems.
Here we simply presented examples of assisting some students who
had problems.
John:
Thank you, Carol. We would be the first to admit that we do not
have all the answers. We want to keep our part of this presentation
brief to give you more time to say what you want to say because
we want to hear from you. We are going to take notes of what you
say. We appreciate your perspectives because we believe many service
professionals are not getting all the training they should be
getting. Furthermore, hard of hearing consumers have meaningful
experiences with these issues. Thus, your ideas are very important.
Establishing
and Improving VR and DSS Services
We have
four subject areas with a total of about 20 ideas that may benefit
some of these different types of hard of hearing students. We
emphasize VR and DSS staff working together. When we mention VR
and DSS, sometimes it applies more to VR and at other times more
to DSS.
Program
Preparation and Changes:
- First, take a
look at your state agency or your college program and assess
where are changes needed. What are you doing now and where
are improvements needed? One area probably you are going to
have to take a look at is how to enhance training of your
staff to better serve hard of hearing consumers. This includes
the psychosocial issues along with other ramifications we
have described.
- Communication
issues are next. You must ensure your staff has good speech
so that hard of hearing students can understand what is happening.
It is helpful to have an amplifier available if the student
wants to use it. As much as possible link with audiologists
where students can get services for their hearing aids and
how to connect them to ALDs. Sometimes you will have to train
the audiologist on counseling issues, but many have worthwhile
ideas. Also, have special phones widely available to make
campus and VR premises more accessible.
- The third topic
is technology. If we can get additional hard of hearing students
to wear hearing aids they will benefit if all professional
services are properly performed. For VR personnel it would
be particularly helpful to have your agency save money by
becoming more conversant with different communication technologies:
models, costs, advantages, and disadvantages. Counselors do
not want to spend $3,000 for hearing aids that might not help
a student to the maximum extent feasible. Some of this equipment
is very expensive. You probably will have to work with other
professionals such as audiologists to get this information.
- You might also
consider VR and DSS staff jointly funding and working together
to set up a technology center on campus where personnel can
demonstrate the use of personal listening devices, answer
questions about them, and show hard of hearing students, staff,
and faculty how to use them.
Recruitment
and Transition
- Carol: Locating
students is a pivotal area because we want to know where those
students are. They do not often come forward because I know
there are more hard of hearing students on our campus than
those who seek services. This is "now or never"
with some students. If we do not locate them or have them
referred to us early, we may never see them.
- VR and DSS need
to collaborate because that can make a major difference to
hard of hearing students. Some state VR agencies do not work
with these students because of order of selection policies.
This means that they first serve the most severely disabled
(MSD) and they consider deaf students to be the MSD. Confounding
this is that sometimes staff do not have specialized training
- DSS and VR, especially
DSS personnel, need to work with the VR counselors outreaching
to high school teachers, counselors, and parents to get referrals
and help with advocacy. Relevantly, liaison personnel must
inform these groups who are often confused about the differences
between IDEA, ADA, and VR. Because these issues are rarely
explained, DSS personnel usually have to tell them that the
college does not automatically provide accommodations or services
because it is under different legislation than K-12 schools.
The Individuals with Disabilities Education Act entitles identified
students to receive services. With the ADA, as VR and DSS
staff know, it depends on contingencies. Students have to
identify themselves as having a documented disability. The
student then works with the counselor to develop an accommodation
plan.
- Parents frequently
are unaware of these complex issues and consequently their
hard of hearing sons or daughters receive no special services
in high school. Also parents need to understand that VR requires
eligibility before service can be rendered. We meet with them
to clarify these confusing differences. We want them to come
into DSS and start the first semester on the right foot. If
you go to www.pepnet.org and click on the product resource
center there is a printout that explains the differences in
all this legislation. There is also a tip sheet on how to
teach hard of hearing students.
- As you know, summer
orientation programs help hard of hearing students learn about
generic campus services, DSS services, dorm experiences (if
available), social activities, and career exploration. These
programs vary from one day to two-weeks. Again, www.pepnet.org
has an on-line interactive training module called "Gates
to Adventure" in which parents and/or teachers can work
together with the hard of hearing adolescent about many aspects
of preparing for and entering college. This is particularly
useful if there is no special on-campus orientation program
for deaf and hard of hearing students. If you have an orientation
program for all students make sure that you disseminate information
about your DSS services because hard of hearing students often
do not understand that they may receive services. Information
about DSS services should also be in the college catalog,
student handbooks, and faculty course syllabi.
The Resisting
Student
John:
Resistance is one way of describing a group of hard of hearing
people. There are other categories, but this is one we wanted
to address. Signs of resistance include preoccupation with being
a person who hears as exhibited by denial, pretense, and withdrawal.
This is done by applying much negative energy to maintain a quasi-self-concept,
"I'm hearing, I'm hearing, I'm hearing," that does not
really fit the person.
- Counselors have
to find ways of breaking down this resistance to help these
persons accept their hearing loss. An easy-going approach
may be effective. Identify with the person having the problem
by putting yourself in her or his shoes and try to see it
from their point of view. Rather than disagree or confront
them, defer to their opinions. Once the counselor has achieved
a comfortable level with the person, try to help them see
other perspectives and guide them toward a more positive social
identity to open doors to realistically addressing communication
and other problems associated with the hearing loss.
- Relevantly, there
is a clear need for better communication assessment tools.
One is from the Kentucky VR agency (PattyC.Conway@mail.state.ky.us).
The central purpose of good assessments is to get an accurate
definition of the communicative functional limitations of
the hard of hearing consumer and move away from the audiogram.
Moreover, confused by the diverse consequences of hearing
loss, many consumers need insights to more effectively address
all the different communication situations they face. In assisting
these students I think you will need to use a structured approach.
Identify one problem at a time then persist in various ways
until the problem is solved. Then move onto the next issue.
Do not overload the student with too much information because
many new ideas are hitting them simultaneously.
- Experienced hard
of hearing students can be peer counselors with new students
by becoming their buddies and informally communicating outside
of formal settings such as the DSS office. These peer counselors
can share ideas and serve as role models with these younger
students to help them do well in college. The University of
Georgia has a unique program called "Sound Off"
where hard of hearing students can get together to discuss
ways they cope with their hearing loss. It is a completely
unstructured group rap and provides cathartic opportunities
for these students to get feelings out and constructively
identify with each as peers.
Retention
Carol:
We know that three out of every four deaf students quit college
without completing a degree, but lack similar information on hard
of hearing students. If you have a student who is informed, involved,
and receives appropriate accommodations from well-trained counselors,
teachers, and staff she or he will more likely persist through
college.
- I want to emphasize
the PEPNet Technical Assistance Centers (TACs). Hinds Community
College has the state outreachTAC serving general colleges
and universities in Mississippi. We get all kinds of calls
about how to work with hard of hearing or deaf students. We
do not know all the answers, but our responsibility is to
know where to get the answers. There are lots of support systems
available such as listservs where you can chat with people
to resolve problems. We need to know about those and other
resources.
- Hard of hearing
students need to know that they can become successful in college.
Their parents and teachers can also benefit from this information.
"Nothing sells success like success." Providing
these persons with success stories from hard of hearing alumni
who can either visit the campus to talk to the students or
write stories of their college experiences. Informed consent
is needed to publicize information on alumni. The Postsecondary
Education Consortium (PEC) publishes PEC Salutes with 40 pages
about successful deaf and hard of hearing students. I think
it will be wider in scope and called PEPNet Salutes.
- Promoting an "Hearing
Loss Awareness Day" can enhance self-esteem and self-knowledge
among hard of hearing students. Have an exhibit booth to display
ALDs so that teachers and others can have hands-on experiences
with these devices. You can also have materials about hard
of hearing students including captioned videos and library
books. The same type of event can be done through a generic
"Disability Awareness Day." However, not all hard
of hearing persons consider themselves to be disabled and
may dislike the term.
- In-service training
for staff is vital. We know many service professionals are
uninformed about how to work with hard of hearing students.
They do not know how to identify them. When they see such
a student answer inappropriately staff may think that the
student is not very bright. Furthermore, even though it is
the student's choice to seek services and accommodations,
it is important to tell them that these are available. In
addition, the faculty should know about accommodations that
their hard of hearing students will need. Inform faculty that
you will answer questions and conduct training workshops.
I am trying to complete a pamphlet about motivating teachers
to more positively serve students with hearing loss.
- Social activities
on- and off-campus are instrumental factors in retention.
DSS personnel need to know ways to get students involved.
Peer counseling and student rap groups have been discussed.
Self Help for Hard of Hearing People has many local chapters.
Their national headquarters has many relevant publications.
Contact www.shhh.org.
- Be sure that VR
is involved on your campus. Our liaison VR counselor comes
once a week to be available for students with problems. We
make any VR counselor feel welcome and set up a place where
they can meet regularly with the students because this is
an important part of the student's total collegiate experience.
General
Audience Discussion
John:
There were many holes in what we said today. We certainly want
your ideas as front-line service providers or as hard of hearing
consumers. Please come up, tell us whom you are, about your experiences,
reactions to some of these issues, and your suggestions to make
them better.
Audience:
Thank you for a very well presented program. My name is George
Kosovich and for 13 years I have worked in the Rehabilitation
Services Administration (RSA) Deafness and Communicative Disorders
Branch with the goal of improving and increasing rehabilitation
services to individuals who are hard of hearing or late-deafened.
I have seen this thing from all angles. I was a student that flunked
out of college because I did not know what was happening and I
was in denial. I was a former VR counselor for persons with all
disabilities and people with hearing loss specifically.
I saw
myself in different ways in all four presented case histories:
for example, flunking out. I had a hearing loss growing up and
in retrospect I can understand why I disbelieved I could graduate
from college. I entered college because my high school buddies
wanted me on the football team. I played football, flunked out
several times, then went back and got my grades up. After high
school I was not referred to VR and had a sudden hearing loss
in my better ear when I was 25 years old. I had been doing unskilled
work. Then I went to VR and after a complete evaluation my counselor
said I had the ability to go to college and graduate. I never
heard that before and it made a big difference in my life by motivating
me. Furthermore, I finally wore a hearing aid for the first time
and that also made a difference, but not completely. I got a large
ALD with a headset then went into the classroom. Talk about facing
denial. I wore the ALD with the headset and some of my football
colleagues would say, "Hey ready to take off?" Joking
like that helped because it was funny. However, by using that
device I could hear the teacher and actually participate in the
class for the first time. I could see what denial is about, but
I do not know how to cure it.
On another
matter, I think colleges and universities should adopt a program
for screening hearing ability. It does not have to be sophisticated
audiology. You can train someone to use an audiometer. Advertise
the hearing screening on posters with the idea that, "Do
not let a hearing loss sneak up on you because it can affect your
grades." After the screening students can indicate they have
a hearing loss, get a more complete evaluation from VR, then the
agency can get involved. But I think the VR office will not follow-up
unless there are more than four students with a significant hearing
loss at a college.
It is
essential to have a VR counselor who knows something about hearing
loss. Unfortunately that is not the case in a lot of places. I
know that Kentucky has 40 personnel trained to work with hard
of hearing people. I also think these specialists should be certified.
We have been depending on rehabilitation counselors for deaf consumers,
but there are not enough of them. Furthermore, the master's degree
training for RCDs requires learning sign language and about deafness,
but that knowledge is not primarily useful in dealing with hard
of hearing or late-deafened people. I think Kentucky is the perfect
model for a professional VR approach to serving hard of hearing
people.
I am pushing
for a new kind of professional. Joanne Wilson, the new Commissioner
of RSA, is advocating for consumer participation in training professionals.
There are some grants coming out now to get consumers who have
successfully adapted to their disability involved in showing other
people they can get by their disability and focus on their abilities.
Similarly, I think there is a role for SHHH members to effectively
help individuals who are newly hard of hearing or just coming
to grips with their hearing loss. SHHH has affiliates all around
the country with many longtime members, but these chapters face
the problem that relatively few people join a self-help group.
Therefore, there is a need for knowledgeable professionals and
paraprofessionals to help hard of hearing persons and their family
members cope with the hearing loss. SHHH has been listening to
various people and I think that the organization is willing to
get involved in the training.
In summary,
we have a long way to go. Some of the topics discussed today are
the same we have been talking about for 40 years. The stigma and
denial still exist and I do not know when they will go away. We
are on the right track as far as VR is concerned and the Kentucky
program is an ideal prototype we should be adopting across the
country.
John:
Thank you, George. I have encountered many of the things George
has experienced. I withdrew from two universities. This is your
time, not my time. Someone else please come up. Tell us whom you
are and what ideas you have.
Audience:
My name is Bonnie Smith and I am the program services manager
for deaf and hard of hearing students at the University of New
Mexico. I have been in this field for 20 years and I began as
an interpreter. However, I soon was working with many hard of
hearing people and started a support group. My basic job when
we had group meetings was to ensure that everyone understood each
other. When there was a misunderstanding I asked them to repeat
what was said to help clarify the flow of the conversation. They
shared a lot and I learned a lot.
One key
point I learned was that you have to deal with the emotional aspects
before you try giving students equipment. When a hard of hearing
student first comes into my office, I spend at least 60 to 90
minutes just letting them talk. After hearing their story, I would
tell them, "Oh, that is very normal." That often shocks
them because many never have been told they were normal. Afterwards
I would say, "Do you want to try something that we have?"
They were amazed by the FM systems. All this might explain why
I have 13 FM systems signed out and have people waiting for five
more I ordered. I had one woman hear her child cry for the first
time in my office when she put on a FM system. At first she was
shy and did not think she could make it through college. She graduated
as a special education teacher who was very excited and confident.
I have many stories like that. I agree that it is worthwhile to
take time with them as well as give them a sense of what is and
what is not normal. Another helpful step is to introduce hard
of hearing students to each other on campus. The SHHH group in
our town tends to be for older people, so the young college students
are not as interested. But I like the idea of starting an SHHH
chapter on campus.
Working
with the faculty ahead of time is helpful. At the beginning of
each semester I inform professors who will have hard of hearing
students in their classes of the names of the interpreter or note
taker and what are their roles. My letter also explains how to
use an interpreter and make audiovisual presentations accessible
to students with hearing loss. I usually get responses from some
inexperienced teachers who flip out before they even get started.
We talk and get them ready to handle the situation when it comes.
Our outreach
approach to hard of hearing students may be unique. We have a
welcome back week for all students which centers around a cultural
day, an employment day, and just a regular department day, including
ours. We have different tables for these topics. I find most of
the hard of hearing students come to our department table because
they do not look for disability services. Not considering themselves
disabled, most do not go to the DSS program, but will come to
our service unit for students with hearing loss. At that point
I say, "Yes, you are qualified because you do not have to
be deaf to get services." I think many hard of hearing students
feel their hearing loss is insufficient to request services. I
do not have any criteria, such as a cutoff point on an audiogram,
but if a student identifies a problem in the classroom, we will
work with them.
John:
Thank you very much, Bonnie. Come on up. More ideas, comments,
please.
Audience:
Thank you. My name is Mitch Turbin and I recently started working
with the Department of Veteran's Affairs National Research Center
in Portland, Oregon. I have a lifelong progressive hearing and
vision loss. I began using hearing aids when I was in college.
I clearly remember in high school and college I became aware of
the hearing problem. Because it was tremendously scary, I pushed
it back, not wanting to acknowledge it. That represents denial
and fear.
One approach
I used when counseling people with disabilities was to encourage
them to form a positive self-concept. This is particularly important
to young college students developing their self-identity. It is
stigmatizing when someone says you have a severe hearing loss
or you see your audiogram. These experiences imply that you are
defective and people want to avoid that idea. I have seen some
well-intentioned professionals introduce young hard of hearing
students to a deaf person or students with hearing and vision
impairments to a deaf-blind person. When these professionals hear
that the young students run away they say, "Oh, they are
in denial." In my opinion, the professionals are really in
denial by denying normal human reactions. I have seen hard of
hearing kids in tears after they encounter deaf people. That is
a normal healthy reaction. The problem is the professionals who
insist that hard of hearing persons are in denial because they
do not want to be associated with deafness.
Conversely,
as you know, deaf people can be frightened to meet a deaf-blind
person because they fear loss of their vision. We need to really
take a look at the healthiness of being afraid of losing a primary
sense. Frankly, do not resist the resistance because that is a
very healthy, positive life energy that indicates a person is
preserving their best possible self-concept. One technique in
my "tool box" as a counselor was never use the term
hearing loss if avoidable. When I had to talk about the hearing
loss, I would say things like. "Well, you do not have the
greatest ears." It is scary, upsetting, and annoying when
people say that you have a hearing problem you would prefer not
to think about the rest of your life. But you can deal with that
if you use the right frame of thinking.
I also
advocate support groups for same-aged peers with disabilities.
Several years after I obtained my first hearing aid, I joined
a young adult support group in New York City that shifted my perspective
on life. Such groups provide opportunities so we could talk about
problems, then more important, go out and have fun afterwards.
John:
Thanks Mitch. Just one point: President Franklin D Roosevelt said,
"The only thing we have to fear is fear itself." Think
about that. Come on up.
Audience:
As an older hard of hearing student going to a community college
I learned some very important lessons. My instructor assigned
us to work in groups, but to my mortification the three other
women in my group refused to work with me. Then I would sit with
CART and it is extremely difficult for people to come over to
my side of the classroom and sit beside me. Would a young hard
of hearing student tell you something like that? Who is going
to tell you about an extremely embarrassing social moment? Young
students in denial would avoid admitting an experience almost
unimaginable to face. These are aspects where counselors need
to be aware. DSS staff members need to have mandatory training
about the social discrimination and ignorance about disabilities
that especially happens in classrooms. These are completely foreign
ideas to many college instructors.
John:
Thank you. We have time for more.
Audience:
I work at a new campus that lacks a critical mass of students
with hearing loss. I have one late-deafened student in her early
20s desperately seeking other peers for a support group. She went
to the SHHH group, an example Bonnie had mentioned, and found
those people were not her peers. Is there a listserv, network,
or other resource where I can connect my student? She even put
up signs in all of the classrooms saying, "Did you hear dot,
dot, dot? Neither did I. Contact me via e-mail." No one has
contacted her.
John:
Have you heard of the Association of Late-Deafened Adults?
Audience:
Sure.
John:
That is a resource. Contact me and I can give you more information.
Do others here have any answers for her?
Audience:
ALDA has a web site at www.alda.org. Furthermore, it is difficult
for the older and the younger folks to come together, but it may
be helpful if some younger folks realized that these older folks
were young too at one point and had to deal with the same issues.
They might consider them as mentors because we have a lot of older
folks with very germane experiences.
I urge
you to look again at the mentor concept. I favor the mentor approach
over the self-help group because the latter has problems. Whereas
28 million Americans have a hearing loss, SHHH nationally has
between 10,000 and 15,000 members. The chapters fluctuate in their
memberships. Sometimes between 5 and 30 people attend a meeting.
If you contact the SHHH office in Bethesda, Maryland (301-657-2248)
they can probably identify somebody as a mentor helpful to a student.
John:
One other positive idea. If we can persuade one hard of hearing
person to accept their hearing loss and become an advocate for
other hard of hearing people then over a period of time 10 to
15 more hard of hearing people will accept their hearing loss,
creating a ripple effect. We have more time. Come on.
Audience:
This presentation released many of my sentiments. My name is Ben
and I am a hard of hearing graduate student at Western Oregon
University. I was born this way and many of these topics have
touched my emotions and make me think about many encounters as
a hard of hearing individual. What stands out are the dynamics
when I interact with groups of hearing individuals and these are
often stigmatizing. On the soccer team I tried to be involved
in social situations, but did not really understand what everybody
was saying. This led to bluffing and a constant loss of self-esteem.
But this process carries on throughout life. Even now at 29 years
old I still unfortunately repeat past behaviors. I am afraid to
ask people to clarify what they said. I play on a flag football
team in Salem and the dynamics are the same as when I was a teenager.
Even with
adults it does not change. These issues need to be confronted.
For example, learning social skills. How do we deal with the dynamics
so as hard of hearing individuals we can be on the same page as
our hearing peers? Furthermore, we have a lot of fears generated
from having been put down, teased, or picked upon because we are
perceived as different due to our hearing loss. It is important
to understand that we have a lot of fears and so do many persons
who hear. These issues need to be examined, for example, during
counseling because feelings run deep and we want to be seen as
normal, not different. The dilemma is we cannot change the fact
that we are different. These sentiments are deeply rooted and
go on for a very long time. Consequently, it takes much willingness
and courage to accept that we are hard of hearing and we cannot
change the fact that we will always be different.
John:
Thank you. I experienced a lot of that myself. Any other wrap-up
comments? Anyone want to say a closing word? Thank you very much.
We appreciate your feedback, listening, and sharing.
Audience:
You have handouts?
John:
The handouts include a communication assessment used by Kentucky
DVR, a list of references with web sites where you can get information
about hard of hearing people, and a handout from our Research
and Training Center. We have an article about hard of hearing
college students. If you want that or other related articles,
contact me at the University of Arkansas (jschroed@uark.edu).
Summary
of Comments by Session Participants
Session
participants made numerous comments that reinforced points from
the presentation and broke new ground by providing original insights.
Key themes from these comments and related issues are listed below:
- Outreach to
hard of hearing students on campus is crucial to contact
those who are unserved, enhance the quality of social life
among hard of hearing peers, and apparently improve the frequency
of visits by VR counselors to the college. Mentoring and self-help
groups are two approaches to outreach. There was approximately
equal support expressed among session participants for using
either approach to bring students together to assist each
other and linking them with DSS. Mentoring, either in the
form of peer counseling, big brothers, buddies, or similar
techniques was advocated. Informal self-help groups also have
their advantages, despite the unique organizational difficulties
faced by Self Help for Hard of Hearing People. It appears
that service professionals act mostly in background roles
to establish or facilitate the interactive dynamics of mentoring
and self-help efforts. More information is needed about how
VR counselors help hard of hearing college students on campus.
In some states a VR agency may assign a liaison or itinerant
counselor to advise in-state students at a specific college.
In special circumstances these counselors may also assist
out-of-state students. Generally, it appears that out-of-state
students communicate with their counselors through e-mail
and TDDs. Video conferencing may increase this pattern in
the future. There is no firm information that a specific number
of students with hearing loss must be enrolled before a VR
counselor visits a postsecondary program.
- Critical mass
mentioned several times in the discussion has significant
ramifications. This idea was popular during the 1980s when
the Arubella bubble" of deaf students, born during the
maternal rubella epidemic of 1964-65, entered postsecondary
training. At that time a critical mass of 30-100 deaf students
was needed for cost-effective provision of support services:
the more deaf students on campus the more services offered.
By the late 1980s the number of deaf students academically
qualified for college declined as did the number of colleges
with comprehensive special service programs. There were about
150 colleges identified in 1988 and about 100 in 2001. Contributing
to this decline is the trend in merging or joining services
for students with hearing loss with DSS programs. However,
if many hard of hearing students do not consider themselves
disabled how can DSS reach them? How can the critical mass
of such students be formed? The next two sections address
this question.
- What is "normal?"
Many ramifications of this question emerged during the discussion.
It is clear that hard of hearing persons are unique as they
are neither hearing nor deaf. At times ridiculed and rejected
by persons who hear, hard of hearing persons are outsiders
in general society. However, because the hard of hearing population
is so large and heterogeneous we must avoid stereotypes. Not
only do the age at onset and severity of hearing loss vary
among individuals in this population, but also do personal
qualities such as resiliency, assertiveness, and self-esteem.
It is normal to express grief over the loss of hearing. It
is normal to want to be like the majority in society. It is
counterproductive to resist accepting one's hearing loss by
stone walling use of helpful accommodations and services.
We need to do a better job in communicating what we mean by
the resisting hard of hearing person. By increasing use of
services and accommodations the DSS program can project the
image that it is normal to be hard of hearing and seek DSS
assistance.
- Overcoming
underachievement. We have given this presentation to seven
national or regional conferences during the past three years
to about 250 participants. During every presentation numerous
hard of hearing students and young adults have come forward
to tell us personal, sometimes emotional, stories, with many
replicating key components of the viscous cycle model displayed
in the Figure. No one has disagreed with the main ideas in
this model. The unfortunate outcome of this model is academic
underachievement by hard of hearing college students: low
grades, failing courses, dropping out. From both our presentation
and comments from the audience it is evident that teamwork
is required to overcome this underachievement. This teamwork
evolves from patient, persistent, and knowledgeable VR and
DSS professionals assisting a student to overcome fears and
denial. The student, in turn, wants to succeed and welcomes
use of accommodations and services that enhance positive psychosocial
adjustment and postsecondary educational attainment. These
are the ultimate goals of VR and DSS professional services.
References
Ries,
P. W. (1994). Prevalence and characteristics of persons with hearing
loss: United States, 1990-91.
Vital and Health Statistics,10(188). Hyattsville, MD: National
Center for Health Statistics.
Schroedel.
J., Kelley, C. & Conway, P. (2002). Where are all the hard
of hearing students? Some tips for enhancing services by postsecondary
and rehabilitation professionals. In K.B. Jursik (Ed.), PEPNet
2002: Diverse voices, one goal, 105-111.
Schroedel,
J. G., Watson, D., &Ashmore, D.H. (2003). A National Research
Agenda for the postsecondary education of deaf and hard of hearing
students: A road map for the future. American Annals of the
Deaf, 148(2),67-73