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Broadening Your Horizons
Cheryl Crocker
Introduction
Work in the field of disability and community rehabilitation services and supports began in the 1960's. At that time the wisdom of the day suggested that people with developmental disabilities were capable of living in the community. A movement began that advocated for people to move from institutions to community with accompanying financial and personal supports. It was common for those employed to support people with developmental disabilities to speak on their behalf; to advocate for individual rights and appropriate supports, to intervene with systems that appeared to be doing less than they should and to encourage families to be involved in a way that suited the age and environment of the person.
While these actions of advocacy were seen to be appropriate at the time, it became evident to many that advocacy alone was not enough. Efforts were made in the early 1980's to assist people with developmental disabilities to speak with their own voice. Empowerment was a common term amongst those providing services. An interesting word, one that suggests that power must be given away by one and assumed by another. The limitation of empowerment appears obvious; one party is in a position of power and must be willing to surrender that power. The other person in the relationship must be willing and able to accept that previously withheld power and control. Consider that relationship carefully, who among us is ready, willing and able to give away what we control. How do we learn to accept control? For most of us, accepting control and responsibility for our decisions is a life-long process. That is not an opportunity that many individuals with developmental disabilities have had the luxury of developing over a lifetime. Broadening Your Horizons, a project funded by the Central Region Persons with Developmental Disabilities Board, was an opportunity to support and assist a group of individuals with developmental disabilities to develop skills in self advocacy.
Background
Central Region Persons with Developmental Disabilities (PDD)
The Central Region is comprised of 8 district communities. In total, 1340 people are supported with a budget of over $60 million dollars. Approximately 38 staff work for PDD and the region has 48 agencies that provide services. The plan for Central region for 2001-2004 included a focus on both person-centered planning and self-advocacy. The intent of supporting the self advocacy initiative was to encourage a process to support individuals to explore self-advocacy, to develop tools to assist self-advocates to pursue self-determination and to develop mentorship and affiliation networks.
Purpose of the Project
The purpose of the Broadening your Horizons initiative was to demonstrate how individuals could become self advocates and practice their self advocacy role to make their own decisions. Further, this was an opportunity for self advocates to take a leadership role both personally and in the community. It was also anticipated that materials, skills and supports would be shared with others in the Central region, other PDD regions as well as other groups that might be interested in self advocacy.
Partners in the Project
Wetaskiwin and Wainwright were two communities interested in self advocacy and exploring the challenges of adjusting to supporting self determination. In Wainwright, 4 agencies participated. One agency participated in Wetaskiwin. All of the participants agreed to work in a way that would be consistent with the overall purpose of the project. Some of the requirements of participation are listed below.
- Projects would be developed that would enhance self esteem
- Everyone would contribute to developing a knowledge base and information on self-advocacy and leadership
- What was learned would be shared with others to encourage all to act as leaders personally and in their community
- Community leaders and members would be sought out and encouraged to become mentors
- Projects would identify and try to address important issues in the community
Products
The project resulted in a self advocacy guide that documents the journey of a small group of individuals with developmental disabilities in their quest to become skilled and strong self advocates. The guide can be accessed on the Central Region Person's with Developmental Disabilities website. This guide should not be seen as a formula for all but rather as documentation of the learning from this project that may assist other individuals, support workers, organizations and those funding supports and services to understand what is possible when there is a sense of shared responsibility and collective action. Supporting self advocates to become skilled, competent and responsible is a philosophical decision. It is not necessarily going to save money or make us more efficient. It is, however, the right thing to do and that will be evidenced throughout the guide.
Advocacy and Self-advocacy
Little has been written about self advocacy. It is a concept that is discussed among professionals in education and rehabilitation as important and desirable. Educators agree that students with disabilities need to acquire self advocacy skills (Lancaster,
Schumaker and Dressler, 2002) yet skills are seldom explicitly taught. Time is one of the barriers often cited by educators. Adolescence is the time when most individuals assume power and control to advocate for themselves. Yet few individuals with disabilities ever adequately learn to use this power and control to become independent and self sufficient (Michaels, 1994). Few students report having talked to teachers, most relying on their parents or resource teachers to advocate for them (Wilson, 1994). Given this, it is not surprising that adults with disabilities struggle with being able to advocate on their own behalf.
Terminology
The language that is used to discuss advocacy and self advocacy is always interesting. Steven Taylor (Personal communication, August 26, 2005) tackles this issue when he suggests that we do not have good language to refer to people who have been labeled. He takes up this issue in arguing that self-advocate does not encompass all people who are labeled. There was no intent in this project to suggest that all people with developmental disabilities are, or should become self advocates. Taylor rightly indicates that some labeled people advocate for themselves and some do not. That has been the experience of this writer. Yet, I remain convinced that many individuals who are labeled do not advocate for themselves or speak on their own behalf because, in part, they have not been supported to gain the skills necessary to do so. Taylor speaks eloquently about people who have been labeled mentally retarded, a term that remains in use in the United States. He has argued for a terminology shift, an argument that has been rejected by the American Association on Mental Retardation membership. Fortunately, this emotionally charged terminology is not used in Alberta. Yet our language is troublesome and cumbersome and politically charged as well. Taylor supports the notion of self advocacy but challenges many of the ways that advocates have been involved, and perhaps taken over, efforts of self advocates. The challenge is for advocates to support, at the request of self advocates, areas of need such as literacy and understanding organizational issues without imposing an agenda that is self serving. As with most things, some advocates and advisors are skilled at supporting people to make there own decision and some are not. Taylor concludes, and most would agree, that there is real danger in letting non-disabled people control the self advocacy movement. Taylor does, however, suggest that it would be patronizing to applaud self advocacy groups for speaking out whether or not there position made sense and that sometimes things are more complex than they initially appear to be. Our efforts throughout this initiative were to offer support not direct activity. Self advocacy is described rather than defined and attempts to address the concerns denoted by Taylor.
What is self advocacy?
One of the fundamental principles in a democratic society is self determination, the right of every citizen to make their own decision and live their own life. Self advocacy is a critical aspect of individuals learning about their rights, speaking with their own voice and living their own lives.
Very simply, self advocacy means that people are able to speak on their own behalf in a way that others listen to them. It sounds simple and it should be, but too often people with developmental disabilities struggle to be heard. Part of this struggle might be lack of experience, part of it might be the way that services and organizations are organized and operate and part of it might be the history of how things have been done. What is clear is that we don't understand what self advocacy is much less how it will work in our every day lives.
Supporting self advocacy means that we need to think deeply about people, control, responsibility, decision making and participation. Self-advocacy can only be defined by the individual and can only be achieved when individuals say that they have the responsibility, ability and support to speak on their own behalf and to important community issues. Self-advocacy will only be realized when advocates, community members and service providers hear and incorporate that voice into the actions that are taken.
Self advocacy is fragile. It is easily misinterpreted and misused so it is important to set up some safeguards if it is to be used in the way that it was intended. It does not mean having one person with a developmental disability sitting on a committee or a board without a meaningful role. It does not mean that meetings are set up to gather input around issues or concerns that have already been decided on.
What is advocacy?
How often have you heard that one person is advocating for another? Advocacy typically implies that there is a wrong to be made right and that one person stands with another to speak on their behalf. It is a term that is often associated with an adversarial relationship and implies that a person is not able to speak on their own behalf, either because of knowledge, competence or interest. Advocacy is not wrong or inappropriate. In fact, advocacy and self advocacy are complementary.
Advocacy typically means promoting a solution to a problem on behalf on another. The Advocacy Commission of Ontario defined advocacy as "an activity that involves taking up the cause of an individual or group of individuals and speaking on their behalf to ensure that their rights are respected and their needs are met."
Those who write about advocacy typically identify power as one of the critical components of advocacy. More specifically, authors differentiate between power over and power with. Advocacy, to be most effective, should be where the advocate stands with the person who is being advocated for. This notion of standing with requires that the advocate knows and understands the circumstances of the person being advocated for; it is a shared relationship that requires trust, compassion, empathy and a belief that the advocate will "do the right thing".
How do self advocacy and advocacy complement each other?
Many situations demand both advocacy and self advocacy. Given that there is solidarity on the issue and the response to the issue, advocates and self advocates can coordinate their activities. Both would be speaking with the same voice. The difficulty, obviously, is when there are differences between advocates and self advocates or when advocates are not sensitive to the voice of the self advocate. One approach that may be appropriate is for advocates to take the lead of the self advocates; patterning their response to that set by the self advocates. Our professional pattern of response is often not to wait, be quiet and listen. We are quick to jump in and take a lead role when we might be better to stop and wait. A big step will be made when advocate and self-advocate voices are given equal consideration.
How did Broadening your Horizons get started?
Broadening your Horizons started in August of 2001. A steering committee of all interested self advocates in the project got together to talk about what they wanted to do, to share information and to plan the next steps. Every time the steering committee met, the direction and path of the project changed. Participatory action research was the base for the project. Every person involved was both a researcher and a participant. The steering committee met regularly over the course of the project to provide direction, share information and to encourage other communities to become part of this exciting initiative. The project formally ended in March of 2003 but the work of self-advocates has become and continues to be an integral part of both of these communities.
What were the projects? How successful were they?
Self advocates were involved in both individual and group projects. In addition, Wainwright and Wetaskiwin collaborated to complete some projects. While there are too many to describe in their entirety, some brief description examples are offered from each of the communities as well from the projects that were undertaken jointly.
Wainwright Examples
Because the world includes everybody
This was Wainwright biggest project and the one they identify as being of the most importance. It entailed organizing a series of activities during Abilities Awareness Week. Self advocates worked with town council and a proclamation for the first week of May, presented in schools, held a workshop for business, participated in the local trade fair.
The importance of community living
Again, working with town council, October was proclaimed Community Living Awareness Month. Self advocates participated in a community open house presentation and the provincial kickoff to the month at the legislature.
Voicing concerns
This initiative was a campaign to increase awareness around the Alberta Assured Income for the Severely Handicapped (AISH). Letters were written to elected officials and meeting held with local Human Resources managers. This project refocused on person's energies on seeking employment as an alternative to AISH.
Wetaskiwin Examples
Becoming an effective board member
One of the ways to affect change is to join a board of directors charged with the responsibility of making decisions. One self advocate researched such opportunities as well as requirements. She is now part of two such groups.
Rights
This video presentation was created with the express purpose of presenting the history of personal and civil rights of persons with disabilities. It also challenges thinking around the role of rights and responsibilities today. It was presented at a conference and has been subsequently used with self advocates, staff and students in disability studies.
Self advocacy made easy
This workbook, in an easy to understand format, guides the user through a process of making life decisions. It is written in plain language and uses a variety of methods to illustrate.
Collaborative Project Examples
Our voice to the Board
Self advocates conducted research asking what was important to people with disabilities in the region. The results were presented to the Central Region PDD Board as part of their business planning process
Central Alberta Advocacy Network
This was an initiative designed to bring self advocates from other Central Alberta communities together in an effort to create a stronger and more extensive self advocacy network. Deemed an overall success, the Network now has membership from across the region and meets on a regular basis.
Every project that was completed was viewed as being just one part of a whole process in becoming a self-advocate. Every project required careful planning and, in the end, gave the individuals participating the skills and requirements needed to become stronger people. Being able to take those strengths and use them every day will ultimately give people the ability to take control of their own lives. The projects, while too numerous to mention, can be summarized in four theme areas: those that directly affected/benefited the individual, projects that had a collective benefit to self-advocates, those that impacted the community and those that influenced service organizations to be more mindful of including self advocates in decisions of the organization. Self-advocates worked tirelessly in their own community and also came together to collaborate on projects of provincial importance as well as offer support to self-advocates attempting to organize in other communities.
The subsequent comments, offered by self-advocates, suggest the powerful results of this journey to self advocacy.
"We learned about ourselves, others and what is important to us. We have learned how to be critical thinkers and how important it is to be a mentor to others. We know how to use our abilities to help others."
"We know how to reflect on our actions and how to learn from the decisions we have made. We know what our rights and responsibilities are. We know how to get help when we need it and to speak up and say what is important to us. We know how to act and what to do in a meeting. We know how to listen and to respect roles and to expect that other respect our roles."
"Most of all, we learned that being a self advocate isn't only something that you learn about, it's something you live and believe in every day."
What skills have self-advocates gained?
In order to have these projects become successes, each Self-Advocate was required to develop new skills or use existing ones that would help them on their journey. The skills used ranged from project to project, but all will be useful in everyday lives. The skills required in the projects are numerous. The ones that were identified by self-advocates are:
- Public speaking
- Speech and letter writing
- Interview skills
- Self conduct & etiquette
- Telephone use
- Research skills
- Basic communication skills & etiquette
- Gaining community connections
- Making plans & carrying them out
- Getting support when needed
What else was required for the projects to be successful?
Support
The above projects could not be done without having support in one form or another. This might have been the support of family members traveling with the self-advocate to special occasions, the support of the community by acknowledging the importance of what was being done, or the support of staff in making sure individuals had a clear understanding of what the projects were about and the steps needed in order to carry them out. Every type of support helped the individual grow as a self-advocate and take on new responsibilities and skills that will help them for years to come.
Self-advocates identified the staff support that was most useful as:
- Assistance in planning and organizing what needed to be done
- Assistance in getting to places in the community
- Assistance in writing letters
- Assistance in understanding what was being said
- Making sure all the information about the project was understood by all those involved
Group Work
Self-advocates all agreed that, for some projects, they could not have done it alone and were glad there was a group to make the project successful. While there were many reasons to embrace group work, the sentiment is summarized by the words of self-advocates.
"By having group meetings, we did what the majority wanted."
"You have other people to help with the jobs that needed to be done."
"You get a lot of different ideas and we can help each other."
Resources
One of the many resources that came to be useful in the majority of the projects completed included forms used to plan and collect information in order for self-advocates to keep on track with their goals. Forms were a way to map out the steps needed to complete each project, to look back and see what was learned and how things might have been done differently.
Although the forms were altered to fit each project, the main purpose was to have a tool that outlined the goal and tasks needed to be completed and a rough timeline to be followed. This made it easy for self-advocates in referring back to their plans when they were looking for the next step in their project.
Other resources that the self-advocates learned from included workshops that were focused on specific topics such as the CET Standards and self-advocacy, having Internet and email available to use in research and communication. Email has become the preferred method to connect with other self-advocates from other areas. Other self-advocates found value in binders, meeting notes, personal organizers and business cards.
A talking stick was used to teach listening skills. Presentation skills were enhanced by learning how to use Powerpoint effectively.
What do staff say about Broadening your Horizons?
After the short period of a year and a half, staff have commented on the changes they have observed in self-advocates who participated in the project. The comments from staff ranged from seeing students coming out of their shell and participating among their peers to more dramatic changes as becoming more vocal in what they want and need in their lives and demanding a voice in figuring out how to meet these needs. Below are some of the comments made by staff who work with self-advocates on a daily basis and throughout the project:
"Individuals are proud that they can make decisions regarding where they live, where they work and how they access the community."
"Individuals are more able to express their needs and wants, and also have ideas on how they can be met."
"A sense of being included in the community has been a big part of the project for a lot of the Self-Advocates."
"They are all more focused on their goals of becoming more independent in the community and in their everyday lives."
"Self-Advocates want the public to understand and acknowledge their feelings. They know they are as important as everyone else in the community when they can things that impact others and make a difference."
How do organizations respond to self-advocacy?
One organization involved in this project speaks to the changes that have been made. This organization made a conscious decision to embrace self-advocacy and determine how the policies and procedures were detrimental to involving self-advocates in the decision making of the organization.
"About 5 years ago, we identified a need to change the traditional way of thinking in our organization."
A number of factors contributed to the change but the organization is clear that a different approach with those receiving services was critical. Some of the noted changes include:
- Individuals chair their own planning meetings
- The organizations values, mission and vision are in keeping with a focus on community inclusion
- Plain language is used in all policy documents
- Self-advocates are part of presentations that are made to community groups
This experience is seen to be positive for self-advocates in a number of ways including:
- Opportunities to be mentored and to mentor others
- Creation of positive relationships
- Leadership roles being assumed in the community
- Increased self confidence and self esteem
- Ability to speak to issues and be part of decision making processes
- Being seen as competent by others around them
Conclusion
What is to be learned from these self-advocates? The projects, the learning, the changes that they affected in both of the communities are phenomenal. Broadening your Horizons, as a project, has allowed self-advocates to realize that being involved is possible. Their capacity to effect change in their community is great. A structured response where an issue is identified, goals are set, a plan is developed, strategies are identified and carried out and outcomes are reviewed typically results in a difference. The projects, both individual and group, have been successful. The overall result is evident when talking with self advocates who report that life is better for them, that they feel more a part of the community in which they live and that they feel like they can contribute in that community. Communities have seemingly responded in kind. Self advocates are sitting on boards and advisory committees and contributing to an enhance quality of life. What will the long term impacts be? While that may be difficult to determine, it appears that the communities of Wetaskiwin and Wainwright have been initially responsive. Awareness and understanding of people with disabilities has been enhanced. The positive effect on other communities in the Central region is evident; with the word spreading to other regions in Alberta as well. It will be up to self-advocates and advocates to be diligent in monitoring the long term effects of this initiative.
References
Advocacy Commission of Ontario: Toronto, ON.
Inclusion International (1998). The beliefs, values and principles of self advocacy.
Lancaster, P. Schumaker, J., Deshler, D. (2002). The development and validation of an interactive hypermedia program for teaching a self-advocacy strategy to students with disabilities. Learning Disability Quarterly, 25 (4) 277.
Robb, W. (1998). Four steps to Self-Advocacy
Retrieved http://www.suite101.com/print_article.cfm/669/6244
June 7, 2004
Robb, W. (2002). How disability should be classified. Retrieved http://www.suite101.com/print_article.cfm/669/6244
June 7, 2004
Robb, W. (2002). The disabled must become their own advocates if the status quo is to change. Retrieved http://www.suite101.com/print_article.cfm/669/6244
June 7, 2004
Ryan, R. (1997). Participatory processes for citizenship for people with intellectual disabilities. Interaction 10 (4).
Stone, K. (1999) To stand beside: The advocacy for inclusion training manual. St. Abbotsford, VIC. Stone and Associates
Submitted by
Cheryl L. Crocker, Ph.D.
Instructor, Grant MacEwan College
Email: Cheryl Crocker
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