My Life Before And After Assistive Technology
By Caytlin Weir
Newcastle, New South Wales
1. Abstract
My presentation is mainly focusing on how assistive technology has improved
my way of life and letting other people know that you can go anywhere you
want if you have persistence and are willing to learn. I will demonstrate how I
have become more of an individual, and in what ways my independence has
grown since starting to use assistive technology.
Because my presentation is in the form of an interactive website, each page
will feature different areas of my life styles and the assistive technology I use
to perform on everyday tasks in these areas.
The first area I will to concentrate on is “Around the Home”, and will look at
using my communication device with the PC, environmental controls via
communication device infrared. The second looks at my education, the
problems I had with and without assistive technology at school, and my
educational achievements. The third area is concentrating on general society,
how people react, and good and bad memories.
Key words
* Cerebral Palsy
* Pathfinder
* Independence
* Communication device
2. Introduction
My name is Caytlin Weir, I am twenty-one and I was born with Cerebral Palsy.
Growing up, I went right through mainstream primary school without a
communication device, using just a communication board to communicate
and do my school work. With the help of my family and therapists, I got a
DeltaTalker in 1999, when I was in Year 6. Due to people at the primary
school being unfamiliar with assistive technology, I didn’t really start to use my
communication device until Year 7. That is when I became an individual and
started to grow as a person. Not only did my communication device allow me
to communicate whenever I wanted, it gave me more independence then I
ever dreamt about, such as things as simple as changing the TV channels. In
2004, the year I did my School Certificate, I got my Pathfinder. I love my
Pathfinder and I wouldn’t give it up for anything. My Pathfinder is who I am
and man it is difficult without it! I went through and completed my Higher
School Certificate. Today I am studying at TAFE doing a certificate four in
Web Design, which I am persistent to finish this year. For the people who
know me, I’m just like every other twenty-one year old girl. I love to go out
with friends, shopping and hanging out. I study and sometimes hate it, and
most of all I want to work! This being said, I wouldn’t be where I am today if it
wasn’t for assistive technology. And I know that this assistive technology is
only going to get better in the future, this will not only improve my life, but it
will have a greater impact on people who are younger then me. They are
going to grow into a world that is more accepting of disabilities and assistive
technology and also by then, the inventions will be more advanced. I hope
my journey encourages other disabled people to get the most out of life.
3. Body of paper
My life just wouldn’t be the same without assistive technology. I can’t imagine
how I would live my life without my Pathfinder to chat to my family and friends,
or to have a way of using my computer to develop websites and send funny
emails to everyone, or to allow me to use my mobile phone to text Mum when
I want to come home from a late night out. I wouldn’t be able to do any of
these things without assistive technology. That is why I must have my
Pathfinder. Every time I get a new carer, we have to sit them down to give
them the talk about “the Pathfinder is like gold” to stress to them how it is and
how they must not damage it! I have my Pathfinder on from the moment I get
out of bed in the morning until going to bed at night. This paper concentrates
on three different areas of my life and demonstrates how I rely on my assistive
technology in these areas. The first section looks at how I use my assistive
technology around the home and how I have became more independent from
using this equipment. I will tell what a day for me at home used to be like
without assistive technology in comparison to how it is today. I will mention
how I would like my home life to be in the future. The second section talks
about my education. How it was in primary school with no communication
device and the problems we met once I got my DeltaTalker. Looking on a
more positive note, I’ve had lots of academic achievements throughout and
after my school life which have all helped build my confidence to keep going
to get to where I want to be. The third and final section is concerning taking
my assistive technology out into general society, how people react and the
good and bad experiences I have faced. Due to advances in technology,
activities in our society are becoming easier for assistive technology users; an
example of these advancements is the new self-serve check-outs now
available in some retail stores.
3.1 Assistive Technology Around The Home
I have so many power points, cables and plugs in my bedroom, it is ridiculous!
I love technology in any shape or form and I am always looking for the newest
gadgets to make my life easier in any way possible. Up until the past couple
of years, I always had to have someone in the house close by, in case I
needed anything. I wouldn’t say I was capable of amusing myself and wanted
company for most of day. It was only when I got my first communication
device at the age of twelve I began to feel like an individual and started to do
things independently. Don’t get me wrong, it has taken all these years to
figure how my communication device could help me and it certainly didn’t
happen over night. It has taken time and much effort of my parents,
therapists and me to get the appropriate equipment to work how I wanted it to.
Luckily, I would say, the work has paid off.
My family took a big step this year as my Mum started a full time job. This
meant that if I was not at TAFE or out socializing like I do best, I would be
home all day by myself. Due to all my assistive technology this is no
problems with me and I wished Mum good luck for the job.
I would like to explain what an ordinary morning at home is for me with the
use of assistive technology. Once I am up and had my breakfast, I turn my
Pathfinder and give my carer strict instructions for what house work she has
to do. Hey, what’s house work without music?! So I turn my TV on using the
IR commands on my Pathfinder. There is nothing on normal TV so I switch
the Activity Row on my Pathfinder and turn on FOXTEL. I go to the list of
channels and select what music channel I want, and of course, volume up.
Like everything, using the environmental controls on my Pathfinder is not as
easy as pressing the buttons. Every time I buy a new electrical device that I
can use via Infrared, my step father has to spend many hours with the
device’s remote, programming the IR commands into the Pathfinder. After the
house work is done to my liking and my carer leaves, I decide I’m sick of that
music and want to listen to my ITunes, so I turn on my computer. The way I
use the computer is from the Pathfinder via an infrared unit mounted on to my
computer cabinet, sitting adjacent to the built in IR Window in the Pathfinder.
When the Pathfinder’s Output Setting is set to Infrared, it sends signals to the
IR Unit which communicates with the PC. Getting this process to work was a
major assistive technology problem and took years to get working. We don’t
know what the problem was and why it wasn’t working, until one day we gave
it one last try and it worked! I think the moral of this story: is never give up on
assistive technology!
Before we got the infrared unit to work, every time I wanted to use the
computer, someone had to plug a cable going from the computer into the
Pathfinder. This meant if I was home myself and plugged into the computer, I
could not move anywhere. One example of how this was a problem was one
day my therapists came to see me and they were ringing the doorbell but I
was plugged into the computer, so I had no way of moving to open the door.
When thinking about it, it was a safety issue too, if ever I needed to get out of
the house quickly while I was on the computer, I would had no way of moving.
Once I open ITunes and have it blaring, I open up my email up to see who
wants to talk to me. Emailing is my main way of communicating with
everyone, I email everyone! Through email, I organize all my carers rosters,
make appointments and meetings, let Mum know what’s happening around
the house of the day, and communicating with friends and family in general.
A few years ago, we did try an infrared telephone system, which allowed my
Pathfinder to operate the phone through another infrared unit. Technically
this system worked successfully and was great in emergencies, but for the
person on the end other of the phone, understanding the Pathfinder voice was
not easy and far from clear. Another problem when I was on the phone was
the time factor. Because it takes a while for me to type out what I want to say,
there were minutes of awkward silence every time I wanted to say something,
so I could have been on the phone for hours to someone. I found myself
getting frustrated and worked up trying to rush the conversation, and
everyone knows “nothing works for Caytlin when she’s trying to rush”!! This is
why I prefer to email everyone over ringing them on the phone. I email
everyone or SMS them which I will discuss later in this paper.
So as you can see, I’m very dependable on my assistive technology around
the house, especially when I am home alone. Without it, I couldn’t do the
activities that I love doing and would need someone in the house with me all
day long. Being twenty-one, I don’t want a babysitter. I want to live as any
young person would and, with the help of assistive technology I do this the
best way that I can, which I feel very proud of. I have a dream of moving out
of home sometime in the future. I want to either live by myself, or with some
of my friends in a big house which we sometimes refer to as the “party
house”! When I was younger, my family or I didn’t think this would was
possible, but with the aide of assistive technology, I know this dream can
come true
3.2 Studying with the use of Assistive Technology
For someone who is unable to communicate, it is extremely difficult to go to
school and be at the same learning level as the other students without the
assistance of assistive technology. For years this is what I did, I didn’t know it
at the time, but going to school with just a communication board to do all my
school work with and talk to other peers with, was very frustrating and a slow,
tiring process for everybody involved. In the middle of primary school was the
first time I was introduced to assistive technology. It was called KENX; this
connected my switch into the unit’s box which plugged into the computer.
Once setup, a scanning interface loaded and you could scan through the
alphabet until it came to the letter you wanted. Again this was another tiring
process, but hey, it was better then that communication board that kept falling
off my lap! From there, we tried other scanning systems, such as InteliKeys
and EZ Keys. Obviously these became more complex as time went on and
looking back, I can’t complain. They got me through primary school.
In my last year of primary school, I got my DeltaTalker. Although I was using
my communication device at home with family, I wasn’t using it at school. It
would just stay in my backpack all day. This was due to the fact that my
teacher’s aide and class teacher had never seen a communication device
before and didn’t know what to do with it. As much as Mum and I tried to
enforce I had to use my DeltaTalker in class, the school just wouldn’t listen!
By this I felt disappointed and frustrated that finally I had the opportunity to
talk, and simply they couldn’t be bothered with it! Would they like someone
saying they couldn’t talk?
So the next year when I started high school, we just mounted my DeltaTalker
on my wheelchair and said it was how I communicated and everyone just
accepted it.
I was given one of the school’s laptop to take between classes. It connected
to my communication device, and that is how I did all my school work. This
process worked much better then the scanning systems and was somewhat
faster. It was only when the teacher put piles of notes on board that I would
ask my aide to take over typing. The only problem with this method was the
cable that plugged into the communication device always getting damaged
due to my aides being careless when plugging it in and unplugging it. This
carelessness broke the pins inside the actual cable. This is just another
example of people not realising how precious and expensive assistive
technology is.
I got my Pathfinder in 2004 when I was in Year 10. I can’t say upgrading my
communication device played a major role in my education, but my
DeltaTalker was going to die and then I would not have had a communication
device to go on with. That year I did my School Certificate, which I completed
with above average marks. I felt proud that I had completed this just like
everyone else!
I went on to do Year 11 the next year. Through this year, I was getting more
and more stressed and tired as the level of work built up. I was up all night to
do all my homework and then tired and grumpy the next day. My family and
friends tried to tell me to reduce my work load, but of course, I didn’t listen. I
had it in my head I had to graduate with my friends. This was until I had a
meltdown and could not do it anymore. From there I decided to do my Higher
School Certificate over two years. Sitting the actual exams was mentally
challenging. Because I am much slower typing then the average person, we
managed to arrange that I have split exams, so I could take as long as I liked.
I was taking a day to write just one essay, no joke! One essay took six hours!
And no way was I going to stop without finishing that essay. As I was getting
into the taxi and driving out of the school for the last time, a funny feeling
came over me for the first time. It was a feeling of self achievement, knowing
that I had completed my schooling no different to anyone else. Yes I was
slower, but I made it. I got pretty decent results too, so I was really happy, but
I think the most important thing for me was I did it. I had accomplished a goal!
The year after school, I started TAFE and I’m still there at present doing Web
Design Certificate Four. Assistive technology wise, the TAFE have been
excellent. We went to meet the head IT people a week before I had to start
and we thought “here we go, they aren’t going to know any about
communication devices or what I need”, but they wanted to help wherever
they could. For my Pathfinder to communicate with the computer, it needs a
program called AAC Keys. The TAFE copied AAC Keys on to their network
so it would load on to whichever computer I wanted to use. I was thankful that
they were so accepting of my assistive technology.
As you can see my assistive technology has played a major impact on where I
am today education wise. I don’t know if I could have even managed to do
high school without it, and no way would I have even thought of doing my
HSC. Right now, I’m at the stage where I don’t know what I want to do in the
future career wise, but what I do know is whatever I end up doing I have
assistive technology to thank.
3.3 Taking Assistive Technology Out Into Society
When I meet a new friend and we’re out somewhere, they sometimes ask me
why I don’t worry about other people staring at me. I just smile and say, “they
are the strange ones”. I have an attitude of this is who I am, take it or leave it!
The way I see it, there is three kinds of people in society: the plain rude ones
who walk in front of you when you are trying to get in a lift, the people who try
to be nice and come up to you to talk to you and say, “how pretty your lights
on your computer are”, and the people who treat you normally, don’t fuss over
you but will help you when needed. I certainly prefer the third kind of people
as most other disabled people would.
But it all comes down to how the individual thinks. Some people freak out
around people with disabilities because they don’t know how to react, and let
me tell you, some people do some very random things, but to make up for
those people, there are some awesome people who would do anything to help
you.
An example of people’s understanding is one of the local taxi drivers in my
area. After getting to know me, this driver saw that I couldn’t ring up the taxi
base and book a taxi by myself easily, so he gave me his private mobile
number so I could SMS him whenever I needed to go somewhere. I am
grateful for this as it was another independence. Now if I am home myself
wanting to go out, I can just SMS the driver and he will reply to say if he can
come.
By now you might be wondering how in the Earth I send SMSs. After years of
having to get someone to read messages for me and then that person not
knowing how to use the phone, my therapists and I were at The
Telecommunications Road Show, where we came across Toan, who was
working on a solution for my exact problem. Toan created a program that
allowed the Pathfinder to interact with a mobile phone via a Bluetooth Dongle
which gave the user total control over the phone. This was a new way that I
could communicate with family and friends. Having access to my mobile
phone was more important to me and my family, as it was a must for my
safety. My Mum always says before I had my phone, she didn’t feel 100%
confident when I went out by myself, as I had no way of contacting anybody if
there was an emergency. For example, one day, I had been out with friends
who had to leave before my taxi came, so I was there myself with no way of
letting anyone know the taxi hadn’t come. If in this situation today, I would
just SMS Mum and she would ring to see where the taxi was, before replying
to me to let me know what excuse they have this time.
In my opinion you can always tell if the person has been around someone
using assistive technology from how comfortable they are around it. If
someone stands back, not knowing to read what I’m typing, they haven’t been
in this situation before, but if they are relaxed they will have a normal
conversation with me without problems. This is evident anywhere you go in
society. An example is going shopping and you go to ask the person behind
the counter a question. Some people just smile and say, “hello darling” while I
am asking the question, but some people will come over and read what I have
typed and then answer my question like they would to any other customer. In
time I think people will get used to and accept assistive technology in our
society.
4. Conclusion
In conclusion to this paper, I think the most important point I would like to get
across to other people who are in my situation, is don’t be afraid to use
assistive technology because it will change your life. I know I have said this
numerous times but I can’t imagine my life without it. I wouldn’t be the same
Caytlin. If you ask anyone who really knows me, what I am like without my
Pathfinder, most would say I am a nightmare and I have to agree! I don’t
know why, but when I don’t have my communication device, I feel helpless
and get worried how people are going to perceive me. I asked myself what
everyone will think of me. Are they going to come up to me and talk baby talk
and think I have no brain?
I know the people who know me would never do
that but it is a funny feeling, like a part of me is missing.
One important aspect that I have noticed as an assistive technology user is
that it is important to introduce assistive technology to the individual at the
right age. I always say you younger you start to use assistive technology the
better. This is because if you start early, you grow up with it and you can
slowly step up to using more complex systems. But if you are introduced to
when you are older and in you are in your adult life, you are going to find the
system difficult to learn and get used to. I have met some people who are in
their forties and they don’t have a communication device to use. After seeing
that they were just as smart as you and I, I decided to ask why these people
were without assistive technology and the answer did make me see another
side of things. Because these people have never used assistive technology in
their lives, they don’t see a need for it. They are happy communicating the
way they do whether it is with a communication board or facial expressions.
So from meeting those people, I have learnt that assistive technology is not
for everybody. It is a personal choice you have to make. I’m not going to say
the Pathfinder is the best communication device out either. It’s another
personal choice. I have a friend who using a LightWriter, and I was going on
about how I think she should get a Pathfinder, until one day she told me to
shut up. Again, she was happy with her communication method and says she
doesn’t need anything more.
For me, assistive technology has been the best thing that has came into my
life. It has given happiness, joy and opportunities I never thought I would
have in life. It has allowed me to make me life long friendships and build a
unique network of peers. I don’t know what my future has in store for me but I
know wherever I am, I will always be grateful for my assistive technology.
5. Acknowledgements
I would like to thank my family, especially Mum, Phil, Renay, Reece, Nan and
Pop for always being there whenever needed. I love you!
To all my best friends, thank you for always being there in the good or bad
times.
Thank you to the best organization in Australia, The Spastic Centre. Firstly,
thank you to my therapists, Cheryl and Jenny for assisting me while I was
writing this conference paper. And to the Spastic Centre in general, thank
you for your help throughout my life, I know you are my future
6. Correspondence
Caytlin Weir
41 Camberwarra Drive
Belmont North, NSW, 2280
caytweir@bigpond.net.au
7. References
Electronic media
8. Summary
My presentation is an interactive website, developed in Macromedia Flash, to
show how my life has changed since I have been introduced to assistive
technology. Each individual page of the website will demonstrate the different
areas of life where my assistive technology has helped me get to where I am
today. These areas of life styles changes include
At home
Education
In society