Table Of ContentCOMMUNICATING TOGETHER VOL. 16, NO. 4/WINTER, 2000
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PETER LINDSAY, SHIRLEY
ter access, telephone arrangements, independent person 1s “not subject
McNAUGHTON, ANN RUNNING,
etc. In contrast, we also discussed to the authority of another’. When
MIRIAM RUNNING
the concept with Bob Gibbons, the we asked Annette Lindsay, wife of
father of a 24-year-old verbal Peter Lindsay, and Bob Gibbons for
This time we decided to combine
women with autism. Elizabeth is their definitions, interestingly they
our editorial with the feature. In
able to look after all her personal both gave the same one “being able
fact, we decided to write the fea-
needs, walks, talks, sings, accesses to make one’s own decisions and
ture ourselves with the help of
books and TV as she desires, and act on them’. Annette and Bob
others so that we could explore the
volunteers in the community daily stressed that being able to act on
full implications of the topic of
with a support worker. Bob is one’s own decisions 1s as important
independence. We were delighted
currently facing the question of as making them. But does the action
at the contribution of the other
what independence means to his have to be undertaken solely by the
associate editors to this issue and
daughter. How much “independ- person without any assistance from
feel particularly fortunate that
ence” will be possible for her? How others, for the individual to be truly
Nola Millin had been asked to do a
can he maximize her opportunities “independent”? Ann and Miriam
presentation on the topic and was
to achieve as much independence Running talked about similar issues
willing to share it with us. We were
as her abilities allow? and used terms like “self determin-
also pleased to find so many other
In the writing of this feature, we ing” and “free” to describe inde-
“contributions” by AAC users in
were also assisted by the thoughts pendence. They also insisted that
previous issues of Communicating
of many persons who have shared whatever independence is, it is
Together.
their life experiences in the pages of important that one strives for it.
ast spring, when the Communicating Together through According to both dictionaries and
associate editors agreed the years. Finally we thought about people then, independence seems to
enthusiastically upon the what independence means to us be about being free to make choices
theme, “Why become independent personally. Is it really any different in one’s life. We seem to feel that it
and how to do it?” we all took for for those of us who (currently) have is very important for mature adults
granted that we knew what “inde- no major disability and those who to be able to make their own choices
pendence” was. As the time for have different types and degrees of and to manage their own affairs.
producing this issue approached, disability? Is anyone really “inde- As we discussed the issue more
however, we began to realize that pendent”? What do we mean by deeply, the question kept surfacing
“independence” wasn’t as straight- independence, anyway? Why try to of whether anyone, speaker or AAC
forward as we had thought! For our become independent? If we decide user, non-disabled or able-bodied,
feature article, we decided to involve to try, how do we go about it? And was really independent. Is anyone
a number of persons in order to perhaps, the most important ques- really totally free to make whatever
examine several facets of independ- tion, “What kind of independent choices they want? What about the
ence and their implications for person would we like to be?” constraints of their social obliga-
persons with disabilities. As is our tions, their responsibilities? What
What is Independence?
custom, we are giving our attention about the constraints of family,
The dictionary is always a good
to AAC users in particular. We
finances, and conscience? Maybe
starting point for a discussion such
began by having a conversation with the only differences in independ-
as this. According to the Oxford
Ann Running, an AAC user with ence for persons who have a disabil-
cerebral palsy in her thirties, and her American Dictionary (1998),
ity or who use AAC and persons
independence can be defined as
mother Miriam. We asked them what
who are able-bodied are in the kinds
“not dependent or controlled by
they thought about the concept of
of constraints they face and the
another person or thing”, “self
independence and the role it played
areas of their lives in which they
governing”. The Funk & Wagnalls
in both of their lives. Ann lives in a
face them. In the end, we even
Standard College Dictionary (1968)
group home and requires total
questioned whether total independ-
adds such synonyms as “autono-
support for her personal care, feed-
ence would be, in fact, a positive
mous” and “self-determining”. The
ing, wheelchair movement, compu-
2 COMMUNICATING TOGETHER VOL. 16, NO. 4/WINTER 2000
thing! Maybe, as the song says, I. Independence in Daily Living
course, freedom of choice in this
freedom is “just another word for Activities area is critical. Selecting what TV
nothing left to lose”. And maybe, a In talking with Ann Running, we program one watches, what CD one
life divorced from the interdepend- learned of the many choices that she listens to, what movie one goes to
ence of one’s family and commu- feels are important with regard to see can make all the difference in
nity members would not be so dressing, eating, grooming. For an one’s feeling of “independence”’!
great! Finally, before we leave the AAC user such as Ann, who is When it comes right down to it,
thought of “interdependence”, let’s severely limited physically, we independence in daily living activi-
remember the strong programs know independence can be greatly ties may simply require care-givers
based on the work of interdiscipli- enhanced through her having taking the time to listen, and under-
nary teams within AAC clinics. Too choices as to what she wears, what lying this, recognizing and respect-
much “independence” within these and when she eats, when she gets ing the AAC user’s rights and
settings can be a liability! up and goes to bed, when she has a wishes!
bath, etc. We recognize the need for Perhaps most important in
Independence for AAC Users
schedules within group homes and relating to independence in daily
In what follows, we examine
we know the time it takes for staff to living activities is the opportunity to
areas in the lives of AAC users in
“listen” to an AAC user. We know, choose where one lives. In Ontario
which they seem to have varying
however, of group homes in which at the present time, supported
opportunities for choice and inde-
time is allotted in the schedule for housing for AAC users is in very
pendent action. We explore three
the AAC user to specify her/his short supply due to a freeze on
areas in particular. The first is the
wishes regarding dressing, eating government-supported housing
area of day-to-day personal care
and grooming. In group homes initiatives. Most of the AAC users
and activities. This 1s the area where
where this does not occur, we have we know feel they are lucky to have
the physical limitations of many
to assume that it is either a matter of a place to live. Some are satisfied
AAC users would seem, on the
habit or convenience, not a matter with their living arrangements.
surface at least, to have the most
of inherent constraints. Many others would like to make a
dramatic impact on their opportuni-
Within the area of daily activities, change, but that option is not avail-
ties for independent action. The
we cannot forget recreation and able to them. For some, the need to
second area 1s that of socializing
entertainment. Technology can play move is urgent due to the poor
and interpersonal relationships.
a vital role in this area. As with other health of family members who now
Making friends and having satisfy-
activities of daily living however, care for them. But no residential
ing social relationships is fundamen-
the understanding and support of openings are available to them. In
tal to being human. We have often
care-givers is essential. Environ- situations such as this, independ-
been told by AAC users that this is
mental controls can provide the ence is impossible. The feelings of
an area that is extremely important
capability for opening the door to AAC users in these situations are
to them, and that it is one of the
guests, turning on the television or those of being totally dependent
most difficult areas for them to deal
CD player, and computers offer upon the decisions of others. In this
with.
opportunities for games, art, music, case, the dependency arises from
The final area we discuss 1s
“travel”, reading and writing. Care- government policy that disregards
independence of mind. This is an
givers must ensure that the technol- the needs of individuals who are
area where, hopefully, AAC users
ogy is kept in good working order, unable to finance their own living
have the greatest potential for
however, and be available to assist arrangements. Their dependence is
independence, freedom and choice.
when problems arise. How many of the most formidable kind; it is
We examine the kinds of constraints
AAC users do you know who have inherent within the societal struc-
that seem to operate in these differ-
equipment that is nonfunctional ture.
ent areas and the extent to which
because of inadequate care given to Second in importance to an
these constraints are a matter of
it by the individual’s care-givers? overall sense of independence for
convenience and habit or are, in
Independence for AAC users in many AAC users, is the ability to
fact, inherent in the situation.
recreation and entertainment relies select and direct their care-givers.
as well upon some physical assist- Pilot programs in Ontario are
ance from time to time. And of giving the authority to manage
COMMUNICATING TOGETHER VOL. 16, NO. 4/WINTER, 2000 3
their care-giver staff to a small weddings, visits to former school- tronic medium. For those who are
number of individuals with dis- mates’ residences, social gatherings print literate and who have comput-
abilities. Funding for this purpose is with other AAC users, are all be- ers, this is already beginning to
directed to the individual, who in coming more rare, as the mechanics happen. A wonderful example
turn is responsible for hiring, train- of getting to locations in other appeared in the March, 1998 issue
ing, or discontinuing the services of districts and personally paying for of Communicating Together in the
a team of care-givers. This begin- care-givers make all but occasional feature article by Anne Abbott, Sex
ning of economic “independence” outings impossible. and the Woman with Disabilities
is a very positive step. It can only be A revealing indication of the (pp. 4-6).
hoped, it will become available to range of friends that are possible for Ann Running is making the
many more persons with disabilities an AAC user can be seen by listing opportunities to socialize more and
who are prepared to assume the those who are considered friends to enlarge her circle of friends. She,
responsibilities involved in order to and examining how often they are along with her mother and the
gain this type of independence. It is seen. All too frequently the second author of this article, are
an important “how to” when it “friends” are close relatives, profes- initiating a “Friends” music group in
comes to independence in one’s sionals who are currently or have in Toronto. The Ontario Federation for
daily living. the past worked with the AAC user, Cerebral Palsy is providing the
relatives of these professionals, and funding for a pilot program, and
ll. Independence in Socializing
volunteers. Few are able-bodied letters of invitation are in the mail as
and Interpersonal Relationships.
peers. Few friends with whom the we write this piece. Ann was 1m-
The area of friends and social
AAC user has regular contact are pressed with the Friends music
relations is another very important
other AAC users. Often fellow group of Kitchener-Waterloo, both
one for many AAC users we know.
students or fellow residents from in hearing them and in reading
In far too many instances they have
many years past are considered about them in the Winter 1998 issue
very limited opportunities to make
friends, even though there has been of Communicating Together. She
friends with peers, be they able-
no contact possible since leaving the decided she wanted to belong to
bodied or physically disabled. For
school or residence. The opportuni- such a supportive group of friends
those living at home with their
ties to see any friends are rare and in Toronto and took the action
family, the circumstances that made
visits with other AAC users are needed to make it happen. Ann also
it difficult for them as children to
often only yearly or biennially. The takes action on Thursday mornings
have a wide range of experiences
opportunity to make a date inde- when she becomes a “greeter” at the
(difficulty of transporting a wheel-
pendently or to see a friend inde- Bloorview-Macmillan Centre.
chair in a family car, inaccessible
pendently rarely if ever exists for There, she and her mother meet
homes of friends, limited public
many of the AAC users we know. parents who want to talk about their
transportation, energy and time of
Even “talking” with a friend children’s problems and have
family members) become intensified
independently can be next to impos- discussions in which Ann’s and
as parents grow older and siblings
sible. This has been one of the Miriam’s experiences can be shared.
have increased responsibilities with
strong motivating forces behind the We know of another AAC user who
their own families. Opportunities for
work by the first two authors to volunteered in a hospital as a guide
independent socializing are practi-
develop BlissInternet. Other soft- during his summer community
cally nonexistent for many AAC
ware for Blissymbol communication college vacations.
users living at home. Even when
via the Internet is being developed These types of opportunities
social events are attended without
in The Netherlands and Sweden. offer a little bit of independent
family members, it is usually in the
The goal with this software is to socializing. Even so, for the person
company of a paid care-giver.
ensure that socialization is not who is not physically independent,
For those living in residential
dependent upon physical access or these outings still require a compan-
settings, staff shortages and reduced
upon print literacy. In time, as more ion, be it a family member, a volun-
transportation services are limiting
AAC users gain access to the teer or paid staff. One need hardly
the kinds of personal outings that
internet, it is hoped that their inde- ask the question, “Why become
used to be possible before the
pendence in socialization will be independent?” in this context. Who
funding cuts in Ontario. Family
increased, at least within the elec-
4 COMMUNICATING TOGETHER VOL. 16, NO. 4/WINTER 2000
among us does not cherish the As we thought about social- adults. Knowing the independent
intimate moments we have one-on- ization independence, we also spirit of many of her students,
one with friends? “How to do it?” thought about sexual independence Sherri’s greatest contribution is in
for AAC users with severe physical and the many challenges faced by providing the environment in which
impairments has to be responded to AAC users in this area. The article independence of mind can develop
by “finding the right technology”! referenced above by Anne Abbott and flourish! Group discussions
Whether it be light tech. (a spelling, and other articles in the March 1998 about the local and international
picture or Bliss communication issue of Communicating Together news, advocacy issues in the To-
board) or high tech. (computer, focus on this topic. This issue of our ronto area, and the challenges of
VOCA), independence can only be magazine was particularly insight- independent living, ensure that this
gained by an AAC system that ful. For current subscribers who do educational program relates directly
matches the individual’s capabili- not have this back issue, we would to issues in the lives of Ann and her
ties, and is “friendly” to friends! be pleased to mail it upon request. classmates. Instruction relating to
Often, the level of technology Independence in this area begins in literacy, communication and each
that is preferred will depend on the having knowledge and in being able individual’s technology is individu-
situation. For one-on-one conversa- to communicate one’s feelings. The alized, but much attention is given
tions with friends, frequently the personal sharing offered by the to group activities and socializing.
quiet private communication board contributors to the March 1998 Throughout the years, we have
is preferred. When socializing in a issue of Communicating Together seen many examples of independ-
group situation on the other hand, make a valuable contribution in the ence of mind expressed in the
the VOCA may be much more area of sexual independence for articles written by and about AAC
appropriate. Independence relies on AAC users. Their ideas relate very users! We thought we would select
being versatile and proficient in the well to the last area of independence a few from past issues of Communi-
technology that is used. To quote we are considering here. cating Together to illustrate the
Ann, “I count on my Freestyle variety and depth of their thinking
lll. Independence of mind
computer to write my own ideas and on this topic:
The body may be constrained
say what I think and feel. I want to
but the mind can be free. We had to
plan my social life and what I do. In Ruth Sienkiewiecz-Mercer
begin this way, for it is in this area
restaurants, I love to place my own (1991)
of independence that AAC users
order from the menu using my From her book co-authored with
can have an equal playing field to
computer!” Steven B. Kaplan, / Raise My Eyes
that of able-bodied persons, if we
As we discussed peers as friends, to Say Yes, p. 224-225
but ensure that their communication
we wondered how the situations of
system is adequate to meet their “Now I am getting an education.
AAC users who attended integrated
potential. Ann and Miriam Running I go grocery shopping for
versus segregated schools during
gave us many examples of the myself, and my personal care
their formative years, differed by the
intellectual independence that is attendants ask me what I want
time these individuals were in their
fostered in the Adult Education to do and when I want to do
thirties. We welcome any thoughts
program at Seneca College, which it......All of the people still
in this area from our readers. For all
Ann attends four days a week. How living at the State School
of us, how many of our school
critical to this independence are should be moved out, and all
friends remain with us throughout
ongoing educational opportunities of the money now being spent
the years? What is the situation for
and ongoing upgrading of commu- at the institution should be
those attending segregated schools
nication and literacy abilities. Here, directed at the handicapped
or classes? What is the situation for
technology plays a vital role, but so living in the community. The
those integrated through their school
does the enlightened instructor! For State School should be torn
years? For many of our AAC users
Ann, this person is Sherri Parkins. down brick by brick.”
in Ontario, integration was not an
Sherri Parkins is a very gifted
option during their early school
teacher and caring human being.
years, SO Comparisons were not
She gives much more than literacy
possible.
instruction in her program for AAC
COMMUNICATING TOGETHER VOL. 16, NO. 4/WINTER, 2000 5
Andrew Murphy (1992) Nola Millin (1993)
Because of my Blissymbolics
Associate Editor, Communicating
“What does the future hold? Together. and Touch Talker, I was able
Everyone thinks about the to have an active part in
future. We all hope and try to “If you are a child, adult, parent, Mom’s funeral. I met and
plan for a better life. What that teacher, clinician, able-bodied, communicated with people
means to each of us will vary. I non-verbal, regardless of who who came to support us in
am no different and spend a lot you are or what condition you love... . My experience
of time thinking about my might have, you will experience showed me that being able to
future. Thinking about finish- change. Isn’t it wonderful? communicate helped me to
ing my education so I can get a Everybody is equal when it feel independent and more in
job. Thinking about developing comes to the experience of control at this very hard
the skills so I can live on my change. As I already mentioned, tines
own, with help of course, what we differ so drastically in
Susan Foster Odell (1995)
thinking about making new is our ability to cope, or in some
In memory of Susan Odell, Carol
friends and staying in touch cases not to cope, with change.
Lynn Katsios wrote:
with my old friends, thinking It seems like our society 1s
about seeing more of the world facing a greater amount of
“Sue was born with cerebral
and how I can make it a better serious changes than ever
palsy. She couldn’t walk.
place.” before and from what ['m
She couldn’t talk. In fact,
seeing, a lot of people are
Sue couldn’t do the things
Kari Harrington (1993)
having difficulties in knowing
that most people take for
A frequent contributor to Commu-
how to’cope:. 4. . I’m going to
granted every day. When
nicating Together.
look at the negative side of
Sue awoke to begin her day,
“The most hurtful thing to me change and discuss positive
she waited to be washed,
personally was when I was ways that either I have coped, or
dressed, then lifted into her
first staying here and asked that I have seen others cope, electric wheelchair. When
one of the attendants to be with change. I’m not a profes- hungry, she waited for
careful of my equipment. I sional counsellor but I do feel someone to feed her. Every
have devices and gadgets that that I have witnessed enough moment of Sue’s life echoed
need special care when loss in my life, or in the lives of the same theme — wait.
handling them. She seemed to others, to be able to share some
When Sue went out, people
be treating them roughly. She of my experiences.” stared at her. As she drove
called me a ‘fuss budget’.
Rev. Lee Mehrlich (1994) her wheelchair, her arms and
When I printed out on my legs had involuntary muscle
Epson how easily these things “Tt is difficult to know that spasms, and sometimes
can be broken, how hard it 1s someone you love is very flailed wildly. And Sue
to get them fixed sometimes sick. What seems to be
drooled.
and how I didn’t want to have helpful is to hope he or she But inside that body that
to do without them, she just will get well and to remem- didn’t work was a quick
laughed at me and walked ber that person for who they
intelligence, a keen percep-
away. It really hurt my feel- are, for their strengths, their tion and an indomitable
ings. I know I was especially smiles, and the many ways spirit. Sue packed more
sensitive at that time, how- that they urge Us'On Sa. =. living into her short years
ever, I think a person who Mother’s death is a very big than many people do in
relies on devices has the right sadness for us. There is so much longer lives. Even with
to expect that their equipment much in her that we do not her physical limitations, she
will be treated with the same want to let go of her. All my
had a job with a community
respect as they are.” life she has been an advocate awareness program. Even
for me. Because I could not though she couldn’t talk, Sue
speak, she was my mouth...
was a trained public pre-
COMMUNICATING TOGETHER VOL. 16, NO. 4/WINTER 2000
SeliChee. tee Sue never individual’s physical disabili- every opportunity available to
questioned her lot in life. She ties to his or her total capacity make choices about his or her life.
never asked for concessions for learning and development And when the opportunities are
because of her disability. She in a decision which was not not there, they make them happen.
lived her life in quiet dignity, only a legal landmark but the Why become independent? In
asking only of others that seal on a triumph of the order to be fulfilled as a person, to
they treat her as an equal.” human spirit. When asked, realize our unique capabilities and
‘Who will make decisions for make our unique contribution in
Treena Guy (1995) you, Justin?’, he responded, our world. How do we do it?
oe Interestingly, it is through an
“Sometimes when I am out
interdependence with others! For it
with friends, strangers ask the
Paul Marshall (1998) is only through interacting with
people that are with me if I
Associate Editor, Communicating others that our potential is realized.
want something. It really
Together. Many AAC users teach this to
frustrates me as it is as if I
those who interact with them. I[sn’t
was not there sitting beside “As I look back over my life, I
it wonderful that as we relate with
them. I know that they are always had an inner drive to
each other, both partners can be
afraid to talk to me because be as independent as I could. I
contributing to the independence
they think that if they don’t am not sure where we get our
of the other? And in this regard,
understand what I say, I will inner drive to do or not to do
there is no difference between
get upset. No way would I be things. In my case, it is not an
those with a disability and who use
upset if at first they didn’t ego trip or “I will show them”
AAC, and those who are able-
understand. It makes me (well, maybe a little!) frame of
bodied! We share much more
happy when strangers try to mind. It is just that I enjoy
sameness’ than difference.
talk to me.” doing things for myself even
if I have to struggle and put
Justin Clark (1996) more energy into a task.”
We want to remind you again
Described by Shirley McNaughton
And there are many more as we did in the last issue that this
“At the age of eighteen (legal examples that space limitations is our last year of publishing
age of adulthood) a Rideau prevent us from sharing! Communicating Together. There
Centre psychiatrist certified will be four more issues published
Conclusions
that Justin Clark was able to after this one. It has been a won-
So, why become independent?
make his own decisions about derful and satisfying experience
Perhaps, rather than respond to our
matters affecting his life. for all of us. We particularly enjoy
original question, we should first
Justin’s father, Ron Clark of the lively and invigourating an-
change it slightly to “Why become
Ottawa, concerned for his nual editors’ meeting where we
an independent person?” For it is
son’s future, filed court action argue and debate what are the
the full person that counts, not one
[1983] to have him declared most important issues in AAC that
facet of the individual that may or
mentally incompetent under should be covered in Communi-
may not be “independent”. In fact,
the Ontario Mental Incompe- cating Together in the upcoming
the writing of this article has lead
tence Act. In the ensuing year. We are going to try to make
us to consider what we should
highly publicized week-long this last year our best! We hope
have been thinking about all along
case, Justin told the court, you will continue to subscribe for
“What is an independent person?”
through his Blissymbol board, one more year.
There are many examples
that he believed he was capa- In the next issue, the theme ts
above and in the pages of Com-
ble of making choices for “Dreaming — everyone has the
municating Together since our
himself. right to dream!”
first issue in 1983. An independent
At the end of the trial,
person is one who is confident in
Judge Matheson challenged
who he or she is and who takes Oe)
Canadians to look beyond an
COMMUNICATING TOGETHER VOL. 16, NO. 4/WINTER, 2000 7
AS COMMUNICATION CHANGES
Smelling the Flowers
chronic care hospital she lives in. me connect to others, for example
Audrey uses a wheelchair and call Wheeltrans to arrange a pick-
ALDA STEPRANS
relies on caregivers for all her up time, but I am happy that I can
needs. Although Audrey cannot direct those who help me. I am
speak, she can spell to make her independently minded enough to
needs known. communicate what it is I need or
want.
t’s important for me to be as
Because I have an electric
independent as I possibly
wheelchair and know how to use it
can be. I like to do as much
safely, I can go to the corner store,
as I can for myself. For some
out to the hairdresser’s or down to
things I am very dependent on
the park on my own. I even went
others. I need to be washed,
to the hardware store around the
dressed, helped out of bed and
corner to buy some hooks. My
listened to. But, I can feed myself,
wheelchair has opened up my
paint, make my own decisions and
world so that I’m not having to be
communicate using my letter
in the same place all the time. I get
board or Light Writer.
Alda Steprans to see new places and experience
If I wasn’t as independent as |
new things. I enjoy that. It is much
Those of you who read Com- now am, I could not get to the oil
more exciting than being in the
municating Together regularly painting classes I attend at the Pat
hospital I live in all of the time. I
know that Audrey McGee is a Arato Aphasia Centre. I love going
love to see the flowers and trees in
regular contributor. She suffered a there! It was only because I was
the gardens of my neighbourhood.
stroke some years ago. Because independent enough to use
she is slow to learn she did not do Wheeltrans that I even got the AUDREY McGEE
well in a rehabilitation setting, but chance to go. Because I cannot
§
continues to enjoy learning at the speak, other people have to help
READERS WRITE
We did not have space fora There is a huge difference between access graphics easily and voice
Using Technology section in using a computer system or a very output has been the best means to
this issue. We did however sophisticated voice output device and open up communication opportunities
receive an interesting comment some introductory voice output device for them. I imagine that you are
from a highly experienced AAC with a young child. Also, use of a worried about devices being used
clinician and one of our readers, voice output device does not preclude exclusively. I don’t think that the
Shelly Deegan. It is interesting to the use of non-technical means of approach should be to shy away from
note how compatible Shelley's communication. What ever happened technology — technology is here to
remarks are with Tracy to the philosophy of ‘total communi- stay. We should focus on how best to
Shepherd's (see page 9-10). cation’? It was widely acknowledged use technology, how to make it work
that the use of signing and graphic the best for our young clients to help
would like to make the follow
communication worked well together teach language, communication,
ing comments. There were
to enhance overall communication. social skills. Let’s make technology
requent negative comments re
Why shouldn’t technology be part of work for us, rather than fearing how it
the use of technology with young
the mix? There is no better way to is impacting on the field of AAC and
children in the Summer 1999 issue of
teach initiation and interjection skills to AAC users.
Communicating Together. I feel that
children than through voice output. I Shelley Deegan
this needs some clarification. I often
have very young nonspeaking visu- Chedoke-McMaster
wonder what people mean when they
ally impaired students who cannot Technology Access Centre
lump everything under ‘technology’.
Hamilton, Ontario
8 COMMUNICATING TOGETHER VOL. 16, NO. 4/WINTER 2000
CLINICALLY SPEAKING
Baby Steps Toward
Independence
to make more of their own choices the pressures of time removed this
and gain their independence more must take a tremendous strain off
TRACY SHEPHERD
quickly. It is interesting to see the AAC users and help to make
transition. communication exchanges more
Clinically speaking there are so relaxed.
many wonderful devices and Low technology is really
computers out there for our clients. amazing in providing independ-
Many of these options promote ence with promoting more intimate
our clients to be independent and conversations and speed. Most of
open up opportunities for them. the AAC users I know are faster
Let’s talk about computer technol- and more comfortable when
ogy. Everybody and their brother having a one-on-one conversation
is making devices that can do using their low-tech systems. And
anything from calling to order a let’s be honest - they don’t break
pizza to doing the dishes when down. One user I know has a
you are finished eating it. The Blissymbol board and communi-
devices and computers are becom- cates mostly with her mother at
ing very sophisticated. Devices home. The board must have
Tracy Shepherd
literally will open doors for indi- hundreds of Blissymbols on it but
viduals with communication they are so well used that the
difficulties and allow them access symbols are actually worn out.
to the world outside which they They haven’t bothered to replace
didn’t have previously. The the symbols since they both know
he goal of independence
Internet alone has been remark- what the symbols are from
is an overriding for
able. Individuals with disabilities memory. Needing to use low-tech,
our clients. There are so
who for a long time needed assist- you might say, does not promote
many ways to explore options for
ance to do their banking and independence. To the contrary,
independence and each individual
shopping and communicating can one must always have a communi-
defines their independence differ-
now go on line with adapted cation partner to have a conversa-
ently. It is quite exciting to see
access and do these functions tion so there is always the need for
clients able to do something
themselves without a facilitator. another person to “assist”.
independently with or without
In more recent past, adapted Voice output certainly has its
technology that they were previ-
access to the Internet has im- place. There are times when folks
ously not able to do. This becomes
proved making the process a bit need to give a speech or use the
the highlight of clinical visits when
easier for individuals with physical telephone and these occasions
we can train a skill and come back
access issues. It certainly opens up lend themselves well to the use of
the next time to see the skill per-
new worlds for them! E-mail is a VOCA. These seem to be more
fected and the client asking us for
another avenue that allows access “out in public” kinds of uses
more information, “How do you
and communication. As we know where projection 1s a concern.
do. .5. “Lnis Keeps US on Our
AAC users are typically a bit slow Multi-modal communication is the
toes. For children the steps toward
in their communication exchanges. most effective way to achieve the
independence are slow and small
Using e-mail nullifies the difficulty highest level of communication
but as individuals enter adoles-
in having to wait for a reply. When possible. I am lucky enough to
cence and adulthood they are able
using e-mail you get to the re- have some friends and colleagues
sponse when you get to it. With who demonstrate the epitome of
COMMUNICATING TOGETHER VOL. 16, NO. 4/WINTER, 2000 9
these skills. Given the many example of independence. Of
modes and systems for AAC there course, AAC users need to be
COMMUNICATION MATTERS
are many options for independ- intimately involved in the choice of
ence available to individuals. It vocabulary available to them. We
is an affiliated publication
seems to be getting the right really need to make a big effort to
of the
combination for each user and include them in this process and, International Society
identifying the best mode for each damn it, we need to give them the for Augmentative & Alternative
situation that promotes the most opportunities to swear if they want Communication (ISAAC)
independent communication to. I have a hunch that they are
possible. probably swearing at us if we don’t Editors: Sally Millar & Patrick Poon
Edinburgh, Scotland
I would like to speak to the include them in the process.
selection of vocabulary that goes Other issues around independ-
Published in the UK
into the voice output devices and ence and vocabulary selection
3 times per year
communication displays. There is include the need for the younger
a real struggle on the part of those child who is not yet literate to have Special Rate to ISAAC Members:
trying to gather this information. a facilitator program all the vocabu-
$44. US
In a lot of cases the non-verbal lary for the child. This really takes
$68. Cdn
individuals don’t have the input the independence away for the child
they should about what goes onto and vocabulary often doesn’t get Case studies
their communication displays. I updated and refined often enough. Clinical/educational practice
newly developed AAC systems
was once involved in a discussion Vocabulary needs to be constantly
book reviews
with a colleague who was opposed reviewed and updated with as much
recent or in-progress AAC research
to there being swear words on a involvement of the child as possible
informal and easy to read
low tech display of a high school in order for children to have appro- multidisciplinary perspective
student. Their rational was that it priate opportunities to communicate. articles by teachers, therapists,
engineers, researchers
was not appropriate for that stu- This issue is eliminated when those
dent to use those words in the high who have acquired literacy skills Subscribe through ISAAC
school environment. Well don’t get can program their own vocabulary. or directly through:
me started! I certainly feel that any So there are some natural barriers
vocabulary available to any other requiring attention regarding the Communication Matters
high school kid should be avail- selection and programming of Fax: 0131-651 6234
Email: sally.millar@ ed.ac.uk
able to any kid who happens to vocabulary.
use augmentative and alternative I once had a teacher ask me
communication. The thought of about a child who had a
this individual is that those words Touchtalker, “How many times a
should not even appear on the day do you want Susie to use this
display. This really makes my thing?” Somehow the idea of com-
blood boil. I strongly feel that munication and independence ISAAC Israel Journal
while kids probably should not be seems to get lost in the glitz of the an affiliated ISAAC publication
using foul language, the truth of technology. My answer to her was
the matter 1s that they do! of course “six and the rest of the Published annually in the spring in
We need to allow kids using class can only make six attempts at Hebrew with English abstracts.
AAC the opportunities to find out communication throughout the day
Subscribe through ISAAC
when it is appropriate to use that as well!”
language and when it is not. Let We have come so far with help- Rate to ISAAC members:
them experience the natural social ing individuals communicate and Regular mail: $20.00 US
consequences of using foul lan- with bridging a few gaps to inde- Airmail: $25.00 US
guage at inappropriate times. Live pendence. There will always be
and learn! After all, that is how all barriers but together we can help to
other kids learn when they can use resolve them one issue at a time.
that language. Here is a prime
10 COMMUNICATING TOGETHER VOL. 16, NO. 4/WINTER 2000
