Phase One of the Leadership Project: Summary
Presented at the ISAAC Conference 2006, Germany
By Melinda Smith and Robin Hurd
In Phase One of the ISAAC Leadership Project, a group of 17 people who use AAC and family members brainstormed about the barriers to leadership for people who use AAC. This was done in preparation for Phase Two of the project: Program Development. Members of the Phase One group came from eight different countries and use a variety of different AAC systems.
The goal of the Leadership Project is to plan ahead so that people who use AAC and people who use speech are prepared for people who use AAC to successfully hold leadership roles, both in ISAAC and carrying over into other settings. It is extremely important for ISAAC to work around these barriers because a number of ISAAC members and some of the leaders are going to be AAC users.
It is important to note the change in mindset that even discussing leadership for people with disabilities represents. Until recently, it was unusual to find people seriously considering that people who use AAC have leadership potential. But currently many people, including people with disabilities themselves, are realizing that although we have made great strides in many areas, we still have room to improve before people who use AAC are consistently able to reach full participation in society.
During our discussions, we talked about three things: what it takes to be a leader, the barriers to leadership, and some supports that have been helpful to those in the group or might be useful in building leadership skills. In the following paragraphs, results of those discussions will be detailed.
SECTION 1: BARRIERS TO LEADERSHIP FOR PEOPLE WHO USE AAC
I had the pleasure in being part of Phase One of the Leadership Project, which is very committed and focused on unraveling some of the groundwork to be carried through to the next phases of this very exciting project. The aim of the Leadership Project is to ensure that some important guidelines will be documented and made available for ISAAC members across the globe. The goal is will provide a much greater opportunity for people who use AAC to fulfill leadership roles within their community and to be part of the global community of AAC users.
Ever since the Leadership Forum was set up on the ISAAC website, I was keen to see where people were coming from and what sort of issues people would talk about. It struck me just how easy it was to share things in an honest and open way. The connection and the empathy have been very encouraging, and I trust I am not speaking for myself but for all those who supported the forum with contributions.
I would like to focus on two sections for this presentation. The first one being barriers. Most people who use AAC will more than likely have multiple disabilities, in addition to having little or no speech. However, it is important to recognize that the term accessibility goes much deeper than making sure the building has a ramp or the toilet has one grab rail. We are talking about multiple barriers that most people do not know about or think about in general talk about accessibility and barriers.
Opportunities
We identified that there is a lack of opportunity to learn or express skills in leadership. A Training programs that support AAC users to enhance their leadership skills are lacking. People who use AAC need to have somewhere to build their knowledge and confidence in being able to demonstrate leadership. People using AAC need to be able to have access to additional support, to support their communication needs while expressing leadership roles. This MUST be a priority within the guidelines.
Time
There are barriers specifically around time. Time, and access, too; as one forum contributor said, before our day even begins we need to communicate with our care workers who assist us to get ready for the day, and when there are meetings to get to, this can be difficult, especially when meetings start early – it makes it almost impossible to do everything. People need to be more aware that people who use AAC face time restrictions in their day and it would make an enormous impact if meetings were planned more carefully, i.e., middle of the day would be much more convenient.
Other barriers include issues around time. The time it takes to compose a message.
Discussions were shared about the ways in which other people wait for responses. How should we maintain the attention we want or need from our communication partners? Many of us know what it feels like when people who are non-AAC users hurry us on, cut conversations short and don’t wait for what we have to say. This creates barriers of anxiety, and so it affects our confidence in entering conversations.
Many of us ask how we get the attention of the others when we are ready to speak. Do we jump in and interrupt and make the ground rules ourselves? Not knowing what to do also creates low expectations for AAC users feeling comfortable enough to participate.
Environmental barriers
Barriers can come from the environment, such as being hard to be heard in a crowded environment. Most communication devices cannot be heard in a party or a meeting room full of people.
Social barriers/ expectations/ isolation
Social barriers are again about the lack of opportunity and training support for both the AAC user and the non-AAC user. We don’t become sociable without experiences and we can only gain those experiences through involvement and activity. Forum participants have recognized the limitations of having little or no training programs to gain community participation in social settings.
Through the forum we have exchanged thoughts about interacting with people generally. For people who use AAC, it is a very slow process to feel comfortable interacting with people; it was felt that the average person does not know naturally how to interact with someone who uses AAC. For example, a speaking person can speak up to 200 words per minute, where as someone using AAC is lucky enough to compose one short single sentence in that time.
This often reflects negatively in that non-AAC users can have low expectations of AAC users. There were thoughts that people who use AAC often have little self-confidence to contribute to conversations. People who use AAC find it hard to ask for the support they need to participate. People who use AAC are often isolated from others who use AAC. Another issue that was identified was that there is often that a lack of opportunity for
AAC users to meet other AAC users, creating feelings of isolation.
How do we create an environment where an AAC user, no matter how slow they are in communicating, can participate and interact more fairly? Training programs must be available so that AAC users can become more proactive in a non-AAC user environment. Rules for meetings and social settings must become more consistent within the AAC environment first, i.e., ISAAC and community services that support AAC users.
SECTION 2: WHAT IS LEADERSHIP AND WHAT DOES IT MEAN TO PEOPLE WHO USE AAC?
When the questions what is a leader and what makes a good leader were posted to the forum, our thoughts and viewpoints were similar, yet we still had individual expectations of how we perceived the role model of a leader.
I think it is fair to quote that it is difficult for people with disabilities in general to gain the recognition and be valued as leaders, which makes it twice as difficult for someone who has little or no speech to demonstrate a leadership role and be regarded and respected as a leader. However, in saying this it is important to acknowledge and recognize that the perception is being challenged and changes are beginning to take place. The Leadership Forum has been a significant breakthrough and demonstrates examples of leaders with AAC leading the way, not just for their generation, but also for younger generations to come.
The forum contributors discussed their views on general leadership qualities. These are some of the highlighted points:
- A good leader is someone who listens to and learns from other people.
- A good leader is flexible in working well with the people he/she has been asked to lead.
- A good leader encourages others to speak their ideas, supports everyone's participation in the group, motivates or inspires the group to achieve its goals and then celebrates their successes.
- A good leader is someone whose goal is to develop other good leaders.
- A good leader should be a patient; what the forum contributor meant by that, is that the leader has to listen to every view of the group and then come to the best possible decision. The
- A good leader has to tolerate some criticism.
- How a good leader interacts with the team: A good leader surrounds him or herself with great advisors. A leader gives each team member their own space in which to move and to be creative. A leader is open, honest, frank and a diplomat and to bring those qualities out in all.
- Leaders and communication: A leader must be certain that everybody on the team understands what the main goal are by continually reminding all team members what the chosen end results are and how far the goals are from being obtained. Good communication skills are essential to leadership.
Being able to perform these qualities well as a person who uses AAC and people who are non-AAC users connected with AAC users performing AAC leadership – means that guidelines for leadership qualities must be documented with consistency, before they can be adapted and added to, to ensure that AAC users are fairly included, i.e., that their leadership qualities are demonstrated in the same way as non-AAC users. Using a personal example to explain the point – and I trust that the forum contributors don’t mind me doing so – in 2005 I was one of 25 participants with a disability who graduated from a year-long leadership course. The challenge for me as an AAC user was to develop a stronger understanding of what makes a good leader, but to also develop a stronger sense of assertiveness and confidence to ensure my voice as an AAC user is heard as well as my voice as a leader. Within ISAAC in general, the potential for AAC users to lead and be recognize for their leadership is a tremendously powerful goal and I speak on behalf of all AAC users and non-AAC users that we must work well together that we will increase the awareness of endless possibilities for AAC users to lead the way.
SECTION THREE: SUGGESTIONS FOR TRAINING
After looking at the barriers to leadership for people who use AAC and prioritizing them, and after discussing what it means to be a leader, the committee also discussed suggestions for improving leadership skills for people who use AAC in the future.
ISAAC Bylaws require people who use AAC to serve on the Board and Executive Committee of the international body. Bylaw 3. 4.c) states : “Directors of the board to ensure representation by a person who uses AAC”; Bylaw 3. 4.3 states: “At least two Directors shall be people who use AAC”. Finally, Bylaw 4. 1, with regard to the Executive Committee states: “…one of whom must be a person who uses AAC.” Some ISAAC committees also stipulate that at least one member must use AAC. The extension of this policy to the boards and executives of the Chapters has been encouraged. However, criteria and procedures for ensuring this have not been spelled out. In addition, nothing has been said about how to ensure that there are enough qualified people who use AAC available to fill these positions. It is important that ISAAC be more specific about how this is to be done.
We recommend that the procedures and criteria be spelled out as follows: All future Board and Executive Committee, and ISAAC Committee members (whether they use AAC or speech) must read a brief training article, which includes AAC etiquette, and answer some questions before serving their term.
We also recommend that there be a way of monitoring progress in securing representation of people using AAC in the Chapters and that if a Chapter is not able to fill the required number of positions with people who use AAC, they begin a comprehensive training program to ensure the availability of leaders who use AAC in the future. What such a program should include is listed in the paragraphs that follow. While a comprehensive training program would be useful for all of ISAAC, it should be mandatory for Chapters who are having trouble filling the required positions with skilled leaders who use AAC.
Any program to support the development of leaders who use AAC must be two-pronged. One portion must help those who use AAC to develop their skills and confidence, the other, equally important component, must help those who speak to view people who use AAC as potential leaders instead of “consumers” or “clients”, and to become familiar with things they can do to eliminate barriers for those who serve with them who rely on AAC.
Training for students who use AAC
For normally developing individuals, learning leadership skills starts early, when they are still in school. Students participate in scout groups and clubs, may serve on student council or work on a school yearbook or newspaper. In each of these situations, they are learning leadership skills while being mentored by an adult.
For people who use AAC, beginning to develop leadership skills at an early age is also desirable. Our committee suggested that some sort of Junior Auxiliary for students who use AAC might be a good way to do this.
In Germany, ISAAC-GSC has set up a mentoring program where people who use AAC progress through 5 specific modules as they learn to share their experiences with AAC with a variety of audiences in a variety of settings. Mentors walk them through the process and document their progress.
In Italy, special educators and family of a student who uses AAC are developing a course that will help him understand his strengths and weaknesses and share how AAC affects his life: a start towards developing leadership skills.
Training for adults
In addition to planning ways for students to learn leadership skills, leadership training must also provide ways to increase skills for those who are no longer students, but who would like to improve their leadership skills.
In the United States, a person who uses AAC shares the seat with a member of the USAAC Board of Directors who is a non-AAC user, with the intention that he learn how the board works so that he will eventually serve on his own.
Several people who use AAC have felt that business courses they took helped them to learn things important to leadership. An important part of leadership training should be learning how committees work, how organizations do business, and so on.
Training for non-AAC users
In addition to these ideas about developing skills for people who use AAC, an important component of any program to encourage leadership for people who use AAC must include training for non-AAC users. This training should include the basics of how AAC works, accommodations or supports that might be needed and, most importantly, some basic AAC etiquette. This part of the training would be most effective if done, at least in part, by someone who uses AAC.
The Phase One committee has discussed AAC etiquette, and we have come up with some preliminary suggestions. This is sometimes a controversial topic among people who use AAC, and scrutiny from a larger group of people who use AAC is advisable to make sure that the final points of AAC etiquette are acceptable to the wide range viewpoints of people who use AAC. This preliminary guide to AAC etiquette is attached as an appendix, below. An important side effect of this training would be to increase the awareness that people who use AAC can be more than a client; they can be a leader, a peer and friend!
Appendix: AAC Etiquette
1. Be aware that communicating with AAC takes longer than speech. Allow extra time for the person who uses AAC to communicate.
2. Providing an agenda and/or notes ahead of the meeting can help the person who uses AAC to prepare their thoughts ahead of time and speed up communication.
3. Taking notes can be difficult for someone who uses AAC. Providing notes after the meeting can help.
4. People who use AAC may feel awkward asking for extra supports. It’s okay to offer. It’s also okay for people to say “no thanks.”
5. Technology glitches happen. Be understanding when they happen in the middle of a meeting.
6. Discuss with your team members how they want to indicate that they have something to add to the discussion and what they like their communication partners to do while they compose their words.
7. Scheduling meetings at the beginning or end of the day may make it difficult for someone with disabilities to work around their personal care schedules. Check to find the most convenient time of day for meetings.
8. The communication partner also plays an important role, but it is still the AAC user’s primary responsibility to take ownership for their communication. Please respect the person who uses AAC as an equal member of the team.