The paper was delivered from a Macintosh G4 laptop using the Origin Instruments headmouse to control the computer and Proloquo speech solution software to speak the text of the presentation.
Thank you for coming today for my talk. I am going to speak about how important it is to have things done in a normal way that able body people do. First you need to adjust your mind set to a non-clinical attitude. Once you do that, you can do anything like taking trips, without a big deal.
"I'm tired of people treating me like a child". It is a common thing to expect respect from people around you, especially if they work for you. But because I speak slowly and softly and sometimes with halts, people who should be helping me, assume I don't know what I want and they take over.
Day-to-day life is filled with common things. Just because I have a disability, it doesn't mean I don't do these same common things. Yet when I do them, they become special. Sometimes I need an adaptation or an accommodation to do them, but that should not change the nature of what I am doing into an event.
I am living independently in my own home with my parents living in another country. I know that communication is the most important thing to make my situation work. Even though my voice is not always clear, I depend on it for everyday talking. I also use computers and technology to do many things throughout the day. After my voice, my computer is my main means of communication. I use email constantly for personal business to keep in touch with family and friends, to talk with my doctors and make appointments, order groceries, etc. So I thought that my good old computer would be my voice to help me select and train my assistants. It will also keep me in contact with family and those whom I may need for help if my assistant really doesn't get it.
Using, common technology, my Macintosh, PowerPoint, a digital camera and a borrowed video camera, I am building a training presentation that will cover important areas in interaction with a personal assistant. It will be a "living book" that I can change and add to as I wish. The topics I will talk about with my assistants are: attitude, personal care, housekeeping and finances.
As I write about each topic I put the paper in a black three-ring binder that everybody who helps me will read.
A person's attitude is the most important thing that I look for. I wrote this description and everybody reads it. If they don't fit this description, we don't go any further.
" I need a helper who keeps to himself and is reserved. Look at my personality and try to follow it. Pretend that you met somebody for the first time and then stay with that mind set. If you could do that, that will be great. I need things done in a certain way in my own house. All I need is to have somebody who is calm and collected, doesn't feel like he or she needs to give me unsolicited advice or unasked for comments and come-back remarks out of the blue. If you could follow my cues, I would appreciate that. Just be there to help professionally, please. Thank you."
For me to be comfortable and safe, things need to be done in a certain way: getting in and out of bed and into my chair, showering, eating, medicines, dental hygiene. My family and I have figured out how to do these things and I need to have my assistant to do them as directed.
Here is an example of how I train my assistants to use an overhead lift to help me get out of bed and into my chair. My brother and father helped me make a video that is now on my computer for my assistants to watch.
Video: Getting out of Bed (8 minute quicktime movie- The movie is too large to put on this website)
Another simple way to show people how to do something is a PowerPoint presentation. I made one to show people how to change the cover on my seating cushion when it is dirty. We took step-by-step photos on a digital camera, downloaded them onto my computer, and pasted them into each PowerPoint slide. We wrote short descriptions of each step in a text box on each slide.
The most common of every-day technology is my cell phone. My phone is velcroed to the power box of my chair and I use a Jabra ear piece that is the microphone and the speaker. I use voice command to dial numbers that are stored. Even though my voice is not always clear, the phone understands my code words for dialing. Sometimes I need to try 3 or 4 times, but it works.
For Christmas two years ago my brother gave me an environmental control system that only cost $100. It is software for my Mac and a little blue box that sends signals to my electronics. It is made here in Germany and was not intended for the disability market. My brother found it on the internet at http://www.irtrans.com The IR-Trans makes my computer into an inexpensive environmental control device. It is a small box the size of a cell phone which plugs into your computer with a standard USB connection. It comes bundled with software for a Mac or a PC. I can now control the TV, DVD player, stereo system, CD player, radio, and cable box in two different rooms all from the computer. So the next time you see some amazing adaptive technology, but don't want to spend all your money, look at it from the do-it-yourself perspective. Your home computer is often the only tool you need. It is simple to take care of. If it doesn't work, I call my brother on my cell phone.
Back to taking care of technology. If an assistant doesn't follow exact directions, things might not work, and even be dangerous.
This is so important that it needs direct instruction from someone who knows exactly how to use each item. My family helps me here - my brother who lives near by and my father and mother who are in France. They can be reached any time by phone, email and video conference using iSight and iChat on my Mac.
In my black book I have a list of all the vendors and repair places with phone, fax and email contacts. The staff of the Computer Access Center, our local Assistive Technology nonprofit, is also there to help me if I need them.
A month before my parents moved to France, my new roommate-assistants moved in to learn from me and my mother how to run the day-to-day things in the house. It was a bit rough in the beginning after my parents left, but as time went on things smoothed out and things are working out.
We took photos of my side-bag with details of where everything belongs. A friend in France recorded the narration of each slide by speaking into my computer's internal recorder.
In addition you will need a computer, PC or Macintosh; Microsoft PowerPoint; a digital still and/or video camera. If you use video, you will need to edit. iMovie is the editing program that comes with the Mac OSX system. It is simple to use.
http://www.apple.com/support/imovie/
Moviemaker 2 is a "free" program from Microsoft if you buy Windows XP or a new computer that comes with XP
http://www.microsoft.com/windowsxp/using/moviemaker/videos/create.mspx
Get to know your local Assistive Technology Center. In Los Angeles it
is the Computer Access Center. www.cac.org
They give individual
support, classes and workshops. In the United States the Alliance for
Technology Access can put you in touch with the Center in your area.
www.ataccess.org
Become active in your ISAAC chapter. They can direct you to local resources.
Since my folks are gone I'm managing everything. Sometimes it's hard to work out the kinks and the bumps and to make everything go smoothly as possible. It's hard to manage a house but. I have to keep telling myself that I have great people helping me. I consider them as my second family. You know how that is. One person is telling you one thing and the other person is telling you another, you go crazy, "Just let me be and let me do this, "gosh"." It's like a house full of people who have a disorder of split personalities. You never know what they are going to say or do next. When things get tuff, I just think how lucky I am and it's worth it. I'm having fun. Sometimes I just want to go to a bar and get drunk.
It's pretty different since my folks are gone. I have more responsibilities now and more things to do to take care of the house like making sure that everybody gets paid and I do errands for myself. It is not easy. I still find time to have a little R and R. People come over sometimes. Sometimes we have parties too. I'm having a wonderful time.
I'm so fortunate and lucky to have this set up
I wish everybody who has a disability were as lucky as I am to have this kind of life. That's how it should be for everybody who has a disability.
The ingredients are: an attitude of respect, good people around you, technology for communication and believing in yourself. Thank you for listening to me. If you want to hear this again, go to my web site http://jad.home.cyberverse.com/