(Keynote
speech given at the National Student Speech Hearing Language Association
conference, Cleveland State University, October 2013)
Non-verbal
Patients Can Speak Up
Thank you, Allison, for the introduction. I am Rosemary Musachio, and I am very honored
to be invited as the keynote speaker at the National Student Speech Language
and Hearing Association Conference. As
you might have guessed, I'm not here to talk about the latest techniques in
speech therapy. Instead, the C S U Speech
and Hearing Program invited me to talk about my life as a nonverbal
communicator.
Now I would like to tell you about my life and its
challenges. My inability to speak is due
to C.P, known as cerebral palsy. I was
born in Italy. As legend has it, the
doctor bumped my head as he was delivering me, which damaged my brain and
caused cerebral palsy. As you can see,
besides speech, the C.P. has affected my ability to walk and perform tasks with
my hands. Fortunately, my ability to
think, to create, to feel, and to dream, has not been impacted.
In fact, many of my dreams have been realized. Besides graduating from C S U and traveling
to many countries, I also experienced another kind of flying--hang gliding at
five thousand feet. The experience was so very liberating, as was riding a
motorcycle and riding horses. Finally, I
have been able to become a productive member of society by landing jobs and
freeing myself, in part, from social security.
If you would like to read about some of these experiences, you may
access my blog, Challenges of Everyday.
Like many children who have speech impairments, I started
taking speech therapy at the United Cerebral Palsy nursery school. All I remember is the speech therapist
sticking a tongue depressor, with red gel on it in my mouth, pushing my tongue
in different ways. Did she really expect
me to talk after she made my tongue so sore?
Speech therapy continued when I attended Sunbeam School. I took two thirty-minute sessions a week for
ten years. At first, Mrs. Gordon, the
therapist, would have me practice sounds and oral exercises, which I could not
do. My father helped me do these
exercises. I could only produce the “m”
sound, just like a toddler saying “Mama.”
So I had a delay of three to four years saying the first sounds a child
makes.
Mrs. Gordon realized that I could not coordinate my tongue
and lips to verbalize anything intelligible.
Fortunately, she concentrated on helping me communicate through other
means. Until then, I used hand and eye
gestures to communicate, mostly with my parents. For
example, if I had to go to the bathroom, I would point to my pelvic
region. If I wanted to go out, I would
keep turning my head to look out the window.
I still use these signs with my mother.
To help me communicate more than basic needs, Mrs. Gordon
created an E-tran chart. It was my first
method of communicating with the world. The
layout of the E-tran chart was based on my lack of pointing ability. it had six groups of letters and
numbers. Each group had a big letter on
top and smaller letters below it. As I
struggle to remember, spelling a word meant positioning my hand on where each
letter was in the group. You can imagine
how difficult it was to just spell cat.
Eventually, my speech therapist discovered that the lower
knuckle of my right thumb stuck out when I made a fist, thus we discovered a
faster pointing method. Around this
time, she also learned about Blisssymbols.
Created by a prison inmate in Canada, Blisssymbols were like
hieroglyphics but with rationales, so children with learning disabilities could
remember them. Each Blisssymbol had its
associated word above it, allowing persons unfamiliar with the system to read
the word. Blisssymbols came in sheets of
one hundred, two hundred, four hundred and eight hundred symbols. It also included the alphabet so I could
spell any word that was not on the board.
My speech therapist would cut and paste a sheet to a game board to be
folded and placed in my book bag. To
this day, I still use a version of the bliss board, only without the symbols.
When I spell something on my word board, I like the person
with whom I am communicating to guess what I am trying to say after a few
letters. It saves much time and
energy. When people guess correctly, I
feel like Bob Barker and want to offer them a prize. Slower guessers make me mentally roll my eyes
and think, “Don't they have it yet?” Nevertheless,
I am lucky if people are willing to read what I point to on the word board or
even that I am able to communicate at all.
I completely understand when kids stare at me and, in their
innocence, ask me why I am in a wheelchair.
Children may not have learned about human diversity yet. However, when an adult starts talking to me
too loudly and enunciating slowly, like I'm hard of hearing, or addressing things
to my mother only, like I'm not there, I cannot spell out the word weirdo on my word board quick
enough. I love the look on their faces when
my friend or my mother stuns them by announcing that I have a B.A. in
Communication and that they should talk to me directly and stop yelling, so I
don't assume they are crazy and roll myself away. It is even better when a friend tells them I
am a successful accessibility analyst.
Although I often use humor to cope with people’s reactions
toward my disabilities, sometimes they anger or frustrate me. Instances when my frustration reaches its
limit can happen at the doctor's office or in the hospital. Three years ago I was hospitalized twice for
pneumonia. The communication barrier
played a major role in both hospital stays being dreadful. Once again, although my mother and friends
told doctors and nurses that I am intelligent, that I graduated from C S U and
I work as an accessibility analyst, the staff still talked to me as if I was
cognitively challenged. My friend posted
a sign above my bed that I can comprehend everything and how to communicate
with me. This method proved to be mostly
futile. Their presumption possibly
prevented them from interpreting my gestures and vocal cues. For example, when I could not reach the call
button, I would often yell out, hoping someone would come. Many times my calls went unanswered. When someone did arrive and asked me what I
wanted, I would look at my pillow and point to it, indicating that I wanted it
raised or needed to be lifted up higher in the bed. I did not know how else to communicate these
needs to them. Some nurses and aids did
not observe that my head was five inches away from the pillow and could not
understand my “yes” and “no” responses.
Alleviating the obstacles that I, along with other nonverbal
patients, have faced is as much our responsibility as it is the doctors,
nurses, and, yes, speech therapists. Besides
a sign saying that we fully comprehend language, such as the one posted above
my bed, nonverbal patients also should have booklets or chart that include
basic information about the individual and their augmentative assistive
communication (AAC) techniques. This
information should be placed in clear view near the hospital bed and in the
medical record for future reference. For
instance, I have an information chart that I always carry in my bag. It has an explanation of how I communicate
with my word board, my eyes, and vocal sounds.
As shown with my hospital experiences, informing a nonverbal
patient's medical team about AAC methods does not always serve its
purpose. While nurses on the morning
shift know that the patient raises her eyes for affirmative responses, the
night shift may be oblivious of this detail.
Patient nurse ratio is another factor that can undermine understanding
communication cues. When a nurse or aide
has ten or more patients to attend to, taking the time to decipher a patient's
gestures can be difficult unless an interpreter or speech pathologist is there
to assist.
Successful interaction between nurses and nonverbal patients
is based on the nurses desire to communicate with them. Despite being in a profession where they are
likely to work with persons with disabilities, some nurses still may have miss
conceptions. When a nonverbal patient is
admitted into the hospital, that reoccurring assumption pops up that he is deaf
or cannot understand. Therefore, any
attempt from the patient to communicate may be overlooked or ignored. According to a study in 2004, patients on
mechanical ventilation have more difficulty communicating with nurses who were
robotic, inattentive, and absent from the bedside. Conversely, communication becomes less
frustrating when nurses are kind, physically present, and informative. It is like that with anyone, not just
nurses. If someone sits five feet from
me and is mute, chances are that this person does not want to read my word
board no matter how much I bang on it. In
fact, it hinders me from wanting to
communicate with the individual, for I browse through thoughts in my
mind, thinking of what to say to them,
and come up with nothing. Even when I am
in a car where I cannot use my word board, I become nervous if the driver or
other passengers are not talking. For
me, it compensates for my inability to speak.
It is very important to educate nurses, staff and nursing
aides to understand non-verbal patients and their level of pain. For instance, a course is offered at Suburban
Hospital in Bethesda, Maryland for nurses to learn to recognize pain in
non-verbal patients based on facial expression, restlessness, vocal sounds,
muscle tone and the ability to console. Therefore, if a non-verbal patient were in
extreme pain, he would express it in one or more of the following ways: frown,
moan, rigid limbs, inability to stay still, or inability to accept verbal or
tactile consolation. Forgive me, but
don't these cues seem obvious? It seems that people depend on communicating via
technology and have forgotten how to communicate in person. I give the Bethesda course credit because it
encourages participants to find communication tools for their non-verbal
patients.
Speech pathologists in Boulder, Colorado have a more
comprehensive strategy in helping non-verbal patients to communicate more
effectively. They developed the On The Spot
Communication Toolkit. This first aid
kit for communication contains word and picture boards in different languages,
adapted call bells for patients who cannot reach or press standard call bells,
writing boards, and pocket talker amplifiers for the hearing impaired. If any of you would like to know where to
purchase the toolkit, let me know and I will send you the link. This toolkit is
up there with the invention of the wheelchair. Having the toolkit available,
however, does not necessarily mean any of the medical staff will use it or will
know how to use it. Hospitals should
provide mandatory training to their employees on how to implement the
toolkits. It is important that the adapted
equipment be easily reached by the patient at all times. The training can include differences between
word versus picture boards, amplification resources for the hearing impaired,
and where to place the adapted equipment, including call bells that are reached
easily. Just a personal aside about call
bells, because my call bell was in the same unit as the television remote
buttons, I often pressed the call button by accident. This prompted one nurse to put the control
unit out of my reach. When I actually
had to use the call bell, I had to yell at the top of my lungs instead.
As I mentioned, the On The Spot Toolkit includes word
boards, otherwise known as EZ Boards, for different hospital settings. The ICU boards include a pain chart that
shows words for pain levels, discomfort types, and personal hygiene. Each board has the alphabet so patients can
spell words. These boards are
inexpensive and hospitals could purchase them for each floor unit.
To help non-verbal patients use word boards more
effectively, nurses can play the same guessing game that people do when I
communicate with my board. For example,
if a patient points to the word bed,
the nurse can guess if he wants his bed raised before he spells it out. Additionally, practitioners should position
the patient differently if he cannot reach the board or cannot gesture
effectively. It is important to have the
nonverbal patient sitting up, so gravity works in their favor. Another good practice is to ask close-ended
or multiple choice questions.
Ineffective communication with non-verbal patients can
worsen their conditions. In fact,
according to the joint commission on accreditation of healthcare organizations,
sixty five percent of medical errors occur due to poor communication between the
medical staff and patients. However,
when nonverbal patients can communicate more effectively, benefits appear. They spend less time in the ICU, have lower
blood pressure, and their respirations become more stabilized. When nurses are aware of a nonverbal patient’s
cues, they can identify alert gestures, such as repetitive eye gazes at an I.V.,
to indicate that a wrong medication is being administered.
These communication strategies and techniques can be applied
in any environment or situation, from airports and airplanes to shopping
centers and restaurants. It would be
ideal if the Americans with Disabilities Act (ADA) would include a provision saying
something like, “Every public entity shall train employees to facilitate
communication with individuals that have communication impairments.” I get annoyed when waiters ask my mother or
friend, “What would she like to drink?” They
could be trained to follow my hand on the menu.
I have to say that many TSA agents in the airports have the good sense
to ask me questions directly.
When I attended CSU, I had a voice synthesizer called the
Light Talker. Each button on the device
could be activated with an infrared light.
Because I couldn't hold and manipulate the infrared light pointer, a
rehab engineer created an iron-like object that I would drag across the surface
and stop at the icon I wanted. Tapping
two picture icons were required to say a phrase. For instance, I had to activate the SUN icon
and the ELEPHANT icon to say, “I'm happy to meet you.” These devices required users to have
photographic minds to memorize all those combinations. Often the Light Talker stopped working, sometimes
in the middle of my forming a sentence. I would look helplessly at my listener
until he or she finally understood that the stupid thing died. This would also happen when the plug came out
of the pointing device. I used the Light
Talker only at school, not at home. Therefore,
a low tech word board is more effective for my personal interactions.
In the past five years AAC technology has surpassed my
wildest dreams and expectations. Look at
the ipad. Its apps offer hundreds of
communication choices and opportunities.
Today, I am able to speak to all of you because I have a loner Maestro Dynavox,
courtesy of the Cuyahoga County Board of Developmental Disabilities. I sincerely thank Kathy Zielinski and Marsha
Malla Med for giving me a loud voice to express my life's accomplishments in an
independent manner to this group of future speech language pathologists.
So, as future speech language pathologists, perceive your
clients as individuals who think and feel, not as subjects to apply theories
on. If they have the cognitive ability,
ask them what communication method would work for them, for their skills, for
their lifestyle. I hope you have gained
insights on the barriers your future nonverbal patients or clients may face and
how to help them overcome communication barriers.
I'd like to thank Sue Neff, Myrita Wilhite, Brigette Culiver,
and Doreen Binnie for inviting me and all the students who volunteered to make
this conference a success. I would also
like to thank my mother and friends who are all in the audience. they are my daily motivation. If anyone has
questions, ask away!
Speech as spoken by speech synthesizer
thank you allison, for the introduction. I am rosemary musashio and i am very honored
to be invited as the keynote speaker at the National student Speech language
and hearing association conference. As you might have guessed, I'm not here to
talk about the latest techniques in speech therapy. Instead, the C S U speech and hearing program invited me to
talk about my life as a nonverbal communicator.
i am an accessibility electronic and information analyst for
a boston based company called, interactive accessibility. i have been in this
line of work for twelve years with different companies. an accessibility analyst tests websites and
software to determine if persons with disabilities can use them. for example, since someone with dexterity
impairments, such as yous truly, can not use a mouse to reach and click links,
then we have to use the tab and
enter keys. that is one of the objectives i test
regarding websites. i also check if a
website or software applications are compatible with screen readers, an
assistive technology used by persons with vision impairments. if a code of a website in not, however
correctly structured, then the screen reader may be seen as gibberish. besides analyzing, i also blog on these
issues and new assistive technology.
now i would like to tell you about my life and its
challenges. My inability to speak is due
to C P, known as cerebral palsy. i was
born in italy. As legend has it, the
doctor bumped my head as he was delivering me which damaged my brain and caused
cerebral palsy. As you can see,
besides speech, the C P has affected my ability to walk and perform tasks with
my hands. Fortunately, my ability to think, to create, to feel, and to dream,
has not been impacted.
in fact many my dreams have been realized. besides graduating from c s u and traveling to many countries, i also experienced another kind of flying, hang gliding at five thousand feet. the experience was so very liberating, as was riding a motorcycle and riding horses. finally, i have been able to become a productive member of society by landing jobs and freeing myself, in part, from social security. if you would like to read about some of these experiences, you may access my blog, challenges of everyday.
like many children that have speech impairments, i started
taking speech therapy at the united cerebral palsy nursery school. all i remember is the speech therapist
sticking a tongue depressor, with red gel on it in my mouth, pushing my tongue
in different ways. did she really expect
me to talk after she made my tongue so sore?
speech therapy continued when i attended sunbeam school. i took two thirty minit sessions a week for ten years. at first, misses gordon, the therapist, would have me practice sounds and oral exercises, which i could not do. my father helped me do these exercises. i could only produce the m sound, just like a toddler saying mama. so i had a delay of three to four years saying the first sounds a child makes.
misses gordon, realized that i could not coordinate my
tongue and lips to verbalize anything intelligible. fortunately, she concentrated on helping me
communicate through other means. until
then, i used hand and eye gestures to communicate, mostly with my parents. for example, if i had to go to the bathroom,
i would point to my pelvic region. if i
wanted to go out, i would keep turning my head to look out the window. i still use these signs with my mother.
to help me communicate more than basic needs, misses gordon
created an ee tran chart. it was
my first method of communicating with the world. the layout of the e tran chart was based on
my lack of pointing ability. it had six
groups of letters and numbers. each
group had a big letter on top and smaller letters below it. as i struggled to remember, spelling a word
meant positioning my hand on where each letter was in the group. you can imagine how difficult it was to just
spell cat.
eventually, my
speech therapist discovered that the lower knuckle of my right thum stuck out
when i made a fist, thus we discovered a faster pointing method. around this time, she also learnes about
bliss symbols. created by a prison
inmate in canada, bliss symbols we like hieroglyphics but with rationales, so
children with learning disabilities could remember them. each bliss
symbol had its associated word above it, allowing persons unfamiliar
with the system to read the word. bliss
symbols came in sheets of one hundred, two hundred, four hundred and eight
hundred symbols. it also included the
alphabet so i could spell any word that was not on the board. my speech therapist would cut and paste a
sheet to a game board to be folded and placed in my book bag. to this day, i still use a version of the
bliss board, only without the symbols.
i completely
understand when kids stare at me and, in their innocence, ask me why i am in a
wheelchair. children may not have
learned about human diversity yet.
however, when an adult starts talking to me too loudly and enunciating
slowly, like i'm hard of hearing, or addressing things to my mother only, like
i'm not there, i can not spell out the word weirdo on my word board quick
enough. i love the look on their faces
when my friend or my mother stunz them by announcing that i have a Be ay in communication and that they should talk to me directly and stop
yelling, so i don't assume they are crazy and roll myself away. it is even better when a friend tells them i
am a successful accessability analyst.
alleviating the obstacles that i, along with other nonverbal
patients, have faced is as much our responsibility as it is the doctors,
nurses, and, yes, speech therapists. besides
a sign saying that we fully comprehend language, such as the one posted above
my bed, nonverbal patients also should have booklets or charts that include
basic information about the individual and their augmentative assistive
communication, ay ay C, techniques. this
information should be placed in clear view near the hospital bed and in the
medical record for future reference. for
instance, i have an information chart that i always carry in my bag. it has an explanation of how i communicate
with my word board, my eyes, and vocal sounds.
as shown with my
hospital experiences, informing a nonverbal patient's medical team about ay ay
C methods does not always serve its purpose.
while nurses on the morning shift know that the patient raises her eyes
for affirmative responses, the night shift may be oblivious of this
detail. patient nurse ratio is another
factor that can undermine understanding communication cues. when a nurse or aide has ten or more patients
to attend to, taking the time to decipher a patient's gestures can be difficult
unless, an interpreter or speech pathologist is there to assist.
Successful interaction between nurses and nonverbal patients is based on the nurses desire to communicate with them. despite being in a profession where they are likely to work with persons with disabilities, some nurses still may have miss conceptions. when a nonverbal patient is admitted into the hospital, that reoccurring assumption pops up, that he is deaf or cannot understand. therefore, any attempt from the patient to communicate may be overlooked or ignored. according to a study in two thousand and four, patients on mechanical ventilation have more difficulty communicating with nurses who
were robotic, inattentive, and absent from the bedside. conversely, communication becomes less
frustrating when nurses are kind,
physically prezent, and informative. it
is like that with anyone, not just nurses.
if someone sits five feet from me and is mute, chances are that this
person does not want to read my word board no matter how much i bang on
it. in fact, it hinders me from wanting
to communicate with the individual, for
i browse through thoughts in my mind, thinking of what to say to them, and come up with
nothing. even when i am in a car, where
i can not use my word board, i become nervous if the driver or other passengers
are not talking. for me, it compensates
for my inability to speak.
it is very important to educate nurses, staff and nursing
aides to understand non-verbal patients and their level of pain. for instance,
a course is offered at suburban hospital in bethesda, maryland, for nurses to
learn to recognize pain in non-verbal patients based on facial expression,
restlessness, vocal sounds, muscle tone and the ability to console. therefore,
if a non-verbal patient were in extreme pain, he would express it in one or
more of the following ways, frown, moan, rigid limbs, inability to stay still,
or inability to accept verbal or tactile consolation. forgive me, but don't
these cues seem obvious? it seems that people depend on communicating via
technology and have forgotten how to communicate in person. i give the bethesda
course credit because it encourages participants to find communication tools
for their non-verbal patients.
speech pathologists in boulder, colorado have a more
comprehensive strategy in helping non-verbal patients to communicate more
effectively. they developed the on the spot communication toolkit. this first aid kit for communication contains
word and picture boards in different languages, adapted call bells for patients
who can not reach or press standard call bells, writing boards, and pocket
talker amplifiers for the hearing impaired. if any of you would like to know
where to purchase the toolkit, let me know and i will send you the link. this
toolkit is up there with the invention of the wheelchair. having the toolkit
available, however, does not necessarily mean any of the medical staff will use
it or will know how to use it. hospitals should provide mandatory training to
their employees on how to implement the toolkits. it is important that the adapted equipment be
easily reached by the patient, at all times.
the training can include differences between word versus picture boards,
amplification resources for the hearing impaired, and where to place the
adapted equipment, including call bells that are reached easily. just a personal aside about call bells,
because my call bell was in the same unit as the television remote buttons, i
often pressed the call button by accident. this prompted one nurse to put the
control unit out of my reach. when i actually had to use the call bell, i had
to yell at the top of my lungs instead.
as i mentioned, the on the spot toolkit includes word
boards, otherwise known as e z boards, for different hospital settings. the i c u boards include a pain chart that shows words for
pain levels, discomfort types, and personal hygiene. each board has the
alphabet so patients can spell words.
these boards are inexpensive and hospitals could purchase them for each
floor unit.
to help non-verbal patients use word boards more
effectively, nurses can play the same guessing game that people do when i
communicate with my board. for example,
if a patient points to the word bed, the nurse can guess if he wants his bed
raised before he spells it out.
additionally, practitioners should position the patient differently if
he can not reach the board or can not gesture effectively. it is important to have the nonverbal patient
sitting up, so gravity works in their favor.
another good practice is to ask closed ended or multiple choice
questions. ineffective communication
with non-verbal patients can worsen their conditions. in fact, according to the joint commission on
accreditation of healthcare organizations, sixty five percent of medical errors
occur due to poor communication between the medical staff and patients. however, when non verbal patients can
communicate more effectively, benefits appear.
they spend less time in the i c u, have lower blood pressure, and their
respirations become more stabilized.
when nurses are aware of a nonverbal patients cues, they can
identify alert gestures, such as
repetitive eye gazes at an i v, to indicate that a wrong medication is being
administered.
these communication strategies and techniques can be applied
in any environment or situation, from air ports and airplanes to shopping
centers and restaurants. it would be
ideal if the americans with disabilities act, Ay D Ay, would include a
provision saying something like, every public entity shall train employees to
facilitate communication with individuals that have communication
impairments. i get annoyed when waiters
ask my mother or friend, what would she like to drink? they could be trained to follow my hand on
the menu. i have to say that many T S A
agents in the airports have the good sense to ask me questions directly.
when i attended c s u, i had a voice synthesizer called the
light talker. each button on the device
could be activated with an infa red light.
because i couldn't hold and manipulate the infared light pointer, a
rehab engineer created an iron like object that i would drag across the surface
and stop at the icon i wanted. twenty
years ago, tapping two picture icons were required to say a phrase. for instance, i had to activate the SUN icon
and the ELEPHANT icon to say, i'm hapy to meet you. these devices required users to have
photographic minds to memorize all those combinations. often the light talker stopped working, some
times in the middle of my forming a sentence. i would look helplessly at my
listener until he or she finally understood that the stupid thing died. this would also happen when the plug came out
of the pointing device. i used the light
talker only at school, not at home.
therefore, a low tech word board is more effective for my personal
interactions.
in the past five years ay ay c technology has surpassed my wildest dreams and expectations. look at the eye pad. its apps offer hundeds of communication choices and opportunities. today, i am able to speak to all of you because, i have a loner maestro dynavox, courtesy of the cuyahoga county board of developmental disabilities. i sincerely thank kathy zielinski and marsha malla med, for giving me a loud voice to express my life's accomplishments, in an independent manner, to this group of future speech language pathologists.
so, as future speech language pathologists, perceive your
clients as individuals who think and feel, not as subjects to apply theories
on. if they have the cognitive ability,
ask them what communication method would work for them, for their skills, for
their lifestyle. i hope you have gained
insights on the barriers your future nonverbal patients or clients may face and
how to help them overcome communication barriers.
i'd like to thank sue neff, myrita wilhite, brigette culiver
and doreen binnie for inviting me, and all the students who volunteered to make
this conference a success. i would also
like to thank my mother and friends who are all in the audience. they are my daily motivation. if anyone has
questions, ask away!
