And this, after many, many edits, is the finished product for the ISAAC conference:
Hello. My name is Anne Abbott. I’m from Toronto, Ontario. I'm an artist, and I run my own art business called Annie's Dandy Note Cards and Artwork. I'm also president of Speaking Differently, an organization for AAC users. And, I'm married to a wonderful man named Rob, and we have 2 cats named Hershey and Rascal. It's a great pleasure to be here today at such a prodigious conference.
Let me explain that I will be using my laptop to give my presentation, and then my communication board to answer questions. This is because I prefer to use my board as it is easier and faster for me. Lenny, here, will act as my communication assistant.
I was 31 when I first started to think about moving out of my family home. To the average person, it may seem rather odd that I didn’t venture out earlier in my life. But, that’s not unusual for many people with disabilities. The main reason for this is that, in the early 70’s, there were fewer options at that time to support people like me to live independently in the community. Many people with disabilities, especially if they used AAC lived in institutions or group homes and very few lived in their own place with attendants to provide them with the services they needed.
I had been fortunate enough, until this point in my life, to have been able to live with my family. Back then, there had been no support services to assist us. My family, the closest people to me, had known how to assist me with my daily needs and knew how to communicate with me.
Would other people be able to do this? Could I teach them about my own unique preferences myself, even though I was an A, A, C, user?
It seemed a daunting task, but I was certain that I was up to the challenge. It was the late 80's, and I had just made several friends through using chatrooms on bulletinboard systems. Indeed, through this type of communication, I met a wonderful man who became my boyfriend, and later my husband. It was because of this interaction with people outside my family, that I gained some confidence about moving out on my own.
For the most part it was an empowering experience to have that first taste of independence. I learned to go out into the community on my own, with my laptop or low tech board as my communication aid. I shopped for groceries, clothes, essentials, and did my own banking for the first time in my life. I learned how to teach my attendants what I required from them in order to lead a happy and productive life.
And yet, there were drawbacks and frustrations. Most of the attendants communicated with me with no problem. However there were sone who were unwilling or unable to learn how to communicate with me.
I prepared long, detailed accounts on my laptop of hese types of situations and relayed them to my service manager. I wrote page after page, detailing situations where I felt my rights and services were compromised because of the staff’s inability or willingness to communicate with me. Nothing was ever resolved.
In 1990’s I moved to another apartment which had attendant services. It was OK at first, but then the same problems with communication arose. I felt powerless. I asked the managers to give me staff who understood how to communicate with me and who allowed me the time I needed to tell them what I wanted. They told me I would simply have to deal with whoever was scheduled to work me that day.
This was unacceptable to me, and In the 2000’s, I decided to fight back. I took my complaint to the press. I told the public about the lack of control and power that I and other people experienced within the attendant services.
I then applied for and got individual funding so that I could hire my own employees to assist me with my daily needs and routines. I received direct funding 2 years ago and I have never been so happy in all my life. Finally I can choose my own people and train them myself.
I love my mom, but even at age 50 I'm still having problems with her understanding my needs. Parents are great, they can be your best advocates or they can be way overprotective.
On a daily basis, we need to communicate to our attendants about what we want to wear, how to prepare our meals, how to do our hair, clean our apartments, charge our wheelchairs, put away our groceries, do our laundry, feed the cat, and make our beds. We also have to specify about important things, like, how to cut up our food small enough so that we don't choke, and how gentle or hard to wash our bodies, or brush our teeth.
We may have to ask our attendants to assist us in making phone calls. For example, I often prepare messages beforehand, if it's a call to have my wheelchair repaired, make a dentist appointment, or, order a pizza. For longer, more involved, phone calls with family and friends, I simply wing it and my employees translate for me.
Because I have individualized funding, I have to hire my own people to work for me. In order for me to do this, I have the employees I already have, act as communication assistants and help me to interview and train the newer people. My employees also assist me in doing the payroll, calling my bookkeeper, talking to the bank manager. And, if one employee gets ill or requests a day or two off, they will assist me in calling other employees to fill the shifts. My employees are very respectful in regards to knowing my preferences and following them. They know that they don't need to assist me with communication if I'm having a face to face conversation with someone I know very well. However, my employees also know that if I glance in their direction it means I need help.
Even when I was growing up, I wanted things done a certain way. Everybody has preferences, and I was no different. Unfortunately, sometimes the things that I asked for were different than what I received. It was partly my fault. A sensitive child, I didn't like it when people got impatient with me and snapped at me when I asked for something. And, so, I shied away from correcting people or even speaking out.
However, I learned that just as people could read my body language, I could read theirs as well. When my mother or father seemed unusually stressed out and distracted, I knew to bide my time until there was a more appropriate moment to talk to them. I learned how to ask for things politely and to explain what I needed with great patience. Somehow along the way, I gained the confidence and know how to speak out for myself and correct people when they did something that I didn't think was right.
Children need to learn that it’s Ok to speak up and not to be afraid to ask people for things. It is extremely important that children are made to feel that they can speak up and what they have to say is valuable.
The relationship that exists between an AAC user and an attendant must be built upon trust, respect, and understanding. If there are none of these things on a mutual basis, then the whole thing falls apart. Another essential part of this relationship is to have an abundance of patience with each other.
If an AAC user faces problems with an attendant, it is very important to deal with the situation right away and to give feedback to the person. If the person does something wrong it is going to drive you nuts, and if you don't speak up it will end up festering inside of you. I realize that some people can feel intimidated or resigned to the way the system works, but it will give you a sense of being in control and empowerment if you voice your concerns.
As well as violating our rights, it is also a safety issue. My friend, Aaron can’t tell his attendant to cut up his food because the attendant doesn’t know how he uses his board. Aaron is afraid of choking, so he often skips meals to avoid this danger.
The worst thing that ever happened to me within an on-site attendant service project was when I was asking my attendant to give my communication board. I was trying desperately to tell her that I had shampoo in my eye and needed her assistance to get it out. The attendant just couldn't understand what I was saying, though, and took away my communication board. I, infuriated by this action, kept insisting that she give it back to me. And then, incredibly, she left me, cold and wet in the shower, and went to got the male manager. He wasn't impressed, and I was shaking with fury and humiliation! How could that attendant not understand that when she took away my communication board it was as if she were putting a gag in my mouth. And, didn't she have any empathy for me at all? How could she not understand that it might be humiliating for me to have the manager come into my home and see me naked? Or, did the attendant simply not think that I have the same feelings as anyone else? I don't know. But, I have never, nor will I ever, forget that day, or, how that attendant made me feel.
One evening I went out to a party and I ended up coming home very late, at maybe 3am. I went to the attendant care office to see if anybody could assist me in going to bed and they actually yelled at me, saying I woke them up.
As I mentioned earlier, problems emerge when a staff person cannot, or will not, communicate with us.
In Ontario, attendants are still not trained in how to communicate and work with people who use AAC. This needs to change.
This is a DVD and booklet for and by people who use AAC about our safety. It shows of us who use AAC and we give advice to others who use AAC and their support networks. It’s available from the ACCPC website and we also have some here for sale at ISAAC.
Not having a communication assistant can be extremely frustrating! The general public does not know how to communicate with me. They think that because I can't speak, I also can't think.. Because of this, they don't speak to me or they talk to me as if I am a child.
It’s been a pleasure talking with you today. I hope that by sharing my personal experiences, I have given you not only a sense of the challenges that can face young people when they leave home and start to live independently, but also a sense of hope and excitement for the future.