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.

People engaged in the Leadership Forum have highlighted these barriers in very personalized way, but it did not take more than a single response to identify that most of us share very similar experiences. These are some barriers the Leadership Forum has highlighted and discussed.

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.