"We are people first."
"We are tired of being treated like children by so-called normal people."
– Author Unknown
The Self-Advocacy Movement 1980 -
Overview
Video: We Are People First (Open-captioned)
Self-advocacy, quite simply, means advocating for one's self, standing up for one's rights. For thousands of people with disabilities around the world, self-advocacy is a term of personal identity, focusing on one's political power and right to self determination. It is also a civil rights movement that represents individuals of all races, colors, and religions who have been systematically neglected, abused, incarcerated, and misunderstood for most of history.
Self-advocacy – as a personal and political philosophy – is a movement primarily of and by persons labeled with mental retardation who are making their own decisions, speaking for themselves and for others with disabilities, and taking control over their lives. Self-advocacy is both part of the larger disability rights movement and a separate movement that concentrates on major issues of concern for persons with developmental disabilities.
"Don't think we don't think."
The Origin of the Self-Advocacy Movement
"Dignity of Risk" in Sweden
In the late 1960s, Dr. Bengt Nirje, director of the Swedish Association for Persons with Mental Retardation, organized a club, comprised of people with mental retardation and people without mental retardation. The club had no leaders, and the rules were quite simple: members would meet to plan an outing, they would later go on an outing, and they would then meet afterward to talk about their experiences.
Dr. Nirje's idea was to provide persons with developmental disabilities "normal" experiences in the community, which sometimes involved personal risk. Club members without disabilities, who were college students, were expected to allow club members with disabilities to make their own decisions, even if mistakes were made.
This program was radical at a time when persons with developmental disabilities were thought incapable of making their own decisions. Most professionals and parents believed that persons with disabilities should be protected at all costs. Dr. Nirje, however, disagreed and stated: "To be allowed to be human means to be allowed to fail."
In 1969, Dr. Nirje delivered a paper at the 11th World Congress of the International Society for Rehabilitation of the Disabled, "The Retarded Adult in the Community." The paper was entitled "Towards Independence," and chronicled recent developments in the self-advocacy movement in Sweden. Following are excerpts from that paper:

Dr. Bengt Nirje
"This spring the Swedish Parents' Association arranged our first weekend-course in 'Parliamentary Procedure Techniques' for 16 mentally retarded adults (with an IQ of 36-60, for the information of those who think the figures relevant; we know that they are not!). The items were: How to form a club of our own, How to debate, How to make decisions, How to be a chairman, etc., etc. The man presiding at the last general session said, "If I were not retarded, this is what I would like to organize because I know how much our comrades at the institutional schools need help to be more respected."
"Last year, the Swedish Parents' Association arranged a national conference of young adults, active in some of our clubs This gave them an opportunity to discuss between themselves and bring out their own views on activities and matters which concern them: leisure time activities, vocational training, employment and wages of the sheltered workshops, and vacation questions. It was probably the first time such a conference had ever been held."
"This is akin to any decent revolt. Some of the retarded adults themselves definitely want to play a new role in society, to create a new image of themselves in their own eyes, in the eyes of their parents and in the eyes of the general public This struggle for respect and independence is always the normal way to obtain personal dignity and a sense of liberty and equality."
The First Self-Advocacy Conferences
The Swedish Parents' Association arranged a national conference for young adults who were active in these clubs. The conference was an opportunity for people with disabilities to discuss, among themselves, issues that concerned them: vocational training, wages at the sheltered workshop, and leisure and recreational activities. News of this event traveled fast in Sweden.
In 1972, England held a national conference sponsored by the Spastics Society and organized by the Campaign for the Mentally Handicapped. Canada followed with its first self-advocacy conference in British Columbia in 1973.
Several people with developmental disabilities from Oregon participated in the Canadian conference. While advisors (people without disabilities) seemed to do much of the talking, everyone who attended was impressed by the large number of persons with developmental disabilities who discussed their concerns.
Following this conference, self-advocates from Oregon organized a meeting and planned their own conference for 1974 with the assistance of individuals from the state of Washington.

At this planning meeting, one man talked about being labeled "mentally retarded" and said, "I want to be known as a person first!"
People First was later chosen as the name for a new self-advocacy organization. A few hundred participants were expected to attend the 1974 conference; however, nearly 600 self-advocates came from all across the United States. Many people who had never before spoken publicly were taking the microphone and being heard. For the first time, many people discovered that their voices did count.
"WE ARE PEOPLE FIRST"
By the 1970s, people with developmental disabilities were moving out of the large public institutions. But barriers to social integration still existed in the community. Perhaps the greatest barrier was the attitude of many people, including parents, who thought that individuals with developmental disabilities were not capable of living and growing in the community.
Inspired by the advocacy and civil rights groups of the 1960s, and formed partly in reaction to professional and parental attitudes, self-advocacy groups formed their own organizations at the local, state, and national levels.
In 1995, over 600 self-advocacy organizations existed in the United States, including the national organization Self-Advocates Becoming Empowered. Self-advocacy groups have also sprung up in a dozen other nations.

Many self-advocacy organizations adopted a structure similar to parent and professional organizations, an approach that was viewed as a measure of success.
Self-advocates planned their own conferences; named their organization (People First, Speaking for Ourselves, Project II), and occasionally even joined professional organizations like AAMR and The Arc; ran their own meetings, held elections, formulated their own issues, and changed the language of the field.

1974 People First Conference (Valerie Schaaf)
I think it's cruel, I think it's terribly cruel that we spoken of this way, labeled this way. To me, if you got to label something, label words, label jars, label streets, but don't label persons.
You put them down in a hole ,and I'd like to see personally, for a goal for People First, is to get rid of "mentally retarded", "mentally disabled", "mentally" everything..
Ed Skarnulis Interviews Rosemary and Gunnar Dybwad
Self-Advocates on the March
Produced in 1987 (Run time 3:59)
Ed Skarnulis: Parents are sometimes intimated by professionals and how some of them are able to overcome that, and you've alluded to that. And so what I'd like to ask you instead is about another movement other than the parent movement.
I saw a picture not too long ago that Gunnar sent me of you marching down the street with a banner twice your size, I think, and you were with some self-advocates, some people with developmental disabilities who were trying to make the point that they wanted their rights and their own recognition. Could you describe that movement and give us some insight into that?
Dr. Rosemary Dybwad: Oh, that was a great day. It was… We were marching from the gates of the institution into the town where we were having a meeting on the common in western Massachusetts. And a lot of the people in the procession had been residents in the institution. It was a great day.
But the whole self-advocacy movement goes back, oh, it's almost 20 years now since Bengt Nirje in Sweden realized the importance of what self-advocacy could do for people, began to have small groups of mentally retarded young people meeting together, perhaps with some college students who were interested in the whole field, and his… the brilliance that he showed was that he realized that they could speak for themselves.
If given a chance, given an opportunity, they could think and they could really express their own needs. That was the beginning. It spread from Sweden to England where they began to have a few small conferences, to Canada, to the United States, so that now – nobody has any numbers – but I think that in every state there must be a group who are beginning to help us learn from them what the real answers should be.
Dr. Gunnar Dybwad: There's a very interesting historical aspect to this. One of the very early propaganda leaflets of the National Association for Retarded Children, as it was still called in those days – and that's important in connection with what I have to say – it was entitled We Speak for Them.
And it was a real true feeling of the parents that nobody but they were interested and ready to speak for their children. But, you see, what faces the parents today is that these children and young people are learning to speak for themselves.
And the parents have to learn, they have to learn to listen. And that is difficult because it was… they were so convinced of their responsibility to be the spokespeople, that for them now to realize that these young people have minds of their own, be it limited – we are all limited compared with some other people – but they can speak up.
And so they are a challenge, and not in any negative sense, but they are challenged with the very movement whose horizon is suddenly being widened by opinions which they didn't expect to hear from their offspring.
Nancy Ward Describing S.A.B.E.
The self-advocacy movement consists of people who have a disability, learning how to speak out for themselves. And one of the things that's really neat to me about my job is that I work for People First in Nebraska, and I'll go around and give support to all the different chapters that we have in Nebraska. And I work with teaching people their rights, but along with those rights, teaching them their responsibilities, 'cause I think it's real important for people to understand the consequences of their actions if we want to be treated the same as everybody else.
Our Voices Count: Self Advocacy Now
The self advocacy movement and founding of the Self Advocacy Association of New York State in the late 1980s.
PLEASE NOTE: This film was not closed captioned by the producer, but is provided here because of its historical significance.
In 1995, a growing grassroots social movement, the self advocacy movement, was challenging traditional stereotypes about people with developmental disabilities. In this video, self advocates talk through and work through the process of starting and formalizing a self advocacy group. They address in detail the roles and responsibilities of officers and members, advisors (who sometimes need to "back off'), the importance of an autonomous existence, and how business is conducted. They clearly demonstrate their ability to make decisions, solve problems, organize for positive change, and shed the labels that have defined and limited them throughout history.
Speaking for Ourselves (1995)
[upbeat trumpet music]
Just hoping that we can win the battle once and for all, and not have to be called handicapped. And hoping that people will look at us as human beings and not as handicapped because we do have feelings.
I know that I have the right to get married, to live on my own, and to attend the church of my choice.
I think it's cruel. I think it's terribly cruel that we are spoken this way, labeled this way.
To me, if you've got to label something, label words. Label jars. Label streets. But don't label persons. You put them down in a hole. And I'd like to see particularly for a [indistinct] for people first, and to get rid of mentally retarded, mentally disabled, mentally everything.
[cheers and applause]
Male narrator: An exciting social movement is growing throughout the world. Virtually thousands of people with development disabilities are shedding their passive role to stand up and speak for themselves. This grassroots movement is known as the self-advocacy movement of persons with developmental disabilities.
Male narrator: It began over ten years ago in the United States, and today there are self-advocacy groups developing in Canada, England, and Australia. These people have organized to demand that they be recognized as people first and handicapped second.
Male narrator:They are demonstrating their ability to make their own decisions and solve their own problems. Their message is that they want to be recognized as full-fledged citizens.
Male narrator: We now invite you to witness the excitement of this movement, and the promise it holds for people with disabilities everywhere.
How rights are sometimes limited. Objectives for this is to discuss some of the ways our civil and human rights are sometimes limited.
Narrator: The process of self-advocacy is a two-way street. When it comes to understanding people with development disabilities, we must recognize that we are blinded by the stereotypes we hold in our minds.
Narrator: The challenge, then, is upon us to re-educate ourselves, to literally turn upside-down our assumptions about who these people are. And as they learn to emphasize their abilities and speak for themselves, we must listen carefully to what they are saying to us.
That really hurts me, deep down.
So you're really kind of caught. The things that people want you not having, that you don't have a chance to get those things, 'cause you getting turned down.
They won't give it to you.
We are adults. And we need to be treated as adults, not as [indistinct].
Yeah.
Yeah.
[cheers and applause]
What about the issue of labeling? Labeling people mentally retarded? What do you think People First is doing about that problem?
I know we are letting the public know that we don't like to be called mentally retarded, dumb, and ignorant, and can't learn. We can learn if they give us a chance to learn. Because we're so slow in learning, that doesn't mean we can't learn at all.
In all my life, I've heard, Judy, you can't do it. It's too hard. Judy, you can't do it. It's too hard. So I try to do it. And I begin to focus in mind, everything that I try to do is too hard.
[indistinct].
But since I've moved up to Good River and started in the workshop, everything is working out really good, because I made up my mind that I can learn anything that I want to do learn, and I can do anything that I want to do. That's about it.
[cheers and applause]
All right, Judy.
How many – I want to see a raise of hands – about how many people have thought about voting? Well, some people say that you shouldn't vote. This lady up in front just said you shouldn't vote because you can't think or can't write. Is that true?
all: No!
Let me hear that again. Is that a yes or a no?
All: No!
Okay. I think I agree with you. I think you can think and you can't write and you can vote.
And so what that does is it allows us to take control and to become powerful. To become powerful with our anger. Organizing is the process of people working together to get things done. Okay? To get power.
Okay, so again, here's the name of our workshop, okay? How we can get power and organize for positive change.
[upbeat trumpet music]
[upbeat trumpet music]
Starting a self-advocacy group is a challenging yet rewarding experience that will question traditional stereotypes of people with development disabilities.
At the 1984 International Self-Advocacy in Tacoma, Washington, veteran self-advocate Jenny Selman led a workshop on how to start a self-advocacy group. She began by listing several important considerations.
One, get another self-advocacy group to help you get started. Two, talk with your friends and about what self-advocacy is, and the need for people to speak up and speak out and become citizens in their community.
Recruiting new members for a self-advocacy group can be accomplished by going to places where people with development disabilities live and work, such as group homes or shelter workshops.
Arrange a group meeting at a time convenient to potential members, and introduce self-advocacy and what people do in self-advocacy groups. Whenever possible, do the presentation jointly with a consumer. As the group begins to grow, consumers will be prepared to do membership recruiting by themselves, with only minimal support from an advisor.
Three, finding an accessible place to meet that is close to the bus lines. Try and find a place to meet where your other groups meet.
If your community has a good public transportation system, getting members to meetings need not be a problem. Another alternative is to use volunteers. When people find out the purpose of self-advocacy groups, they are often willing to help with the logistics.
A group in Massachusetts was successful in dealing with their transportation needs by recruiting volunteers through and advertisement in their local paper.
And for some of us, the transportation issue meant, "How do I get from my front door "to the local group meeting? And how can I get volunteers to get me there?" And so we developed a whole system around asking for volunteer drivers in the newspaper and then screening people, and that was their job.
And that's one of the things that we were really clear about, that we wanted specific people with roles. So there was a driver. There was a personal care attendant. Because we didn't want to be put in a position where you had to ask somebody to be nice to you.
You know, that if their job was to be a driver, then that's--and they had volunteered for that, then that was their job, and it wasn't that they were, you know, just doing it to be nice.
Four, make sure that the day and time you meet is good for everyone. Make sure the day and time you meet is not the same day and time when people are already involved with other things. Five, make sure that the members are in control of the place, day, and time that you meet.
Although the advisor provides a lot of direction as the group gets started, she or he must never forget that the group belongs to the members, and that they have ultimate control.
Often, a group may make a mistake which perhaps could be avoided if the advisor took control. But the group can only learn and develop from the consequences of their own decisions.
And I said, "Hey, when are we gonna learn how to take responsibilities and take risks?" If you don't learn how to take responsibilities and risks, are we ever gonna learn?
'Cause if you take the risks for us, we're not learning anything. If you take the responsibility for us, we're not gonna learn. So we have to learn somewhere.
A primary consideration in starting a self-advocacy group is whether to begin as an autonomous, self-sustaining group, or join forces with an existing organization.
Some groups have started under the umbrella of a parent or a professional advocacy organization, such as the Association for Retarded Citizens or the Protection and Advocacy Agency. Others have started within a service program, like a group home or sheltered workshop.
Yet another approach is to join with an existing coalition of physically-disabled self-advocates, such as a center for independent living. The advantage of joining an existing group is the opportunity to share such resources as office space, supplies, and political contacts.
However, in order to avoid problems of conflict of interest and tokenism, and in order to gain credibility as experts on their own disability, group members need to strive toward establishing an autonomous existence.
Once the basic logistics are completed and the first meeting is scheduled, it is time to begin doing self-advocacy. Forming a group is a process, and the key to making it successful is to start slowly and build a strong foundation.
Most people with developmental disabilities have never had the experience of being part of a self-advocacy group, where they are in control and have the responsibility to make decisions and solve their own problems. Frequently, early meetings will move at a very slow pace.
A good stimulus for the start of a meeting is to have individual members introduce themselves. For many people, this will be a new and scary task, so encourage each individual with a round of applause and an affirmative statement like, "Nice to see you here."
This will ensure that everyone gets a chance to speak in the meeting, and it is the first step toward sharing power so that everyone feels like an important and equal member.
We believe that it's the individual People First member who is the most important person. People First is not doing its job unless we are working with an individual member so that he or she can stand up and speak out.
We can't lose sight of that individual member. They're the heart, the blood, the guts of People First.
Another process vital to the development of a self-advocacy group is setting and reaching goals. This provides an invaluable sense of personal power to the members, so it is important to help them set realistic goals.
For a new group, this may be something as basic as learning to speak in turn. By helping pick meeting topics that have relevance to the lives of the members, people will be motivated to attend meetings and take part.
How many of you remember the last time you were angry? Raise your hands.
Raise your hands.
This morning.
This morning, this morning. How many of you were angry about something that happened to you because you were disabled?
all: Me!
It is extremely important for advisors to back off at the first indication that assistance isn't absolutely necessary. By constantly relocating the focus of power within the group, the group itself will establish a solid foundation.
As this occurs, speak with members about electing officers. The natural leaders will become evident early on and will probably be elected. However, in some cases, first officers are appointed by the group until everyone has the chance to learn the voting process.
By serving as an officer, members learn to serve as peer leaders for their group and as role models to other members. As the group gets stronger, activity committees become a good way for everyone to begin learning about taking responsibility and feeling like they are an important part of the group.
These activities can revolve around raising money or just having fun, either of which is guaranteed to build team spirit.
With time, the advisor will find that the group needs less and less assistance and can remain in the background during much of the activities, coming forward to serve primarily as a resource person.
This is a good indication of a job well done.
When I first started, I wasn't very open. I was afraid to talk. I was afraid to tell people things because I thought I would get in trouble.
But it's not that way now, and that's what had helped me-helped me to come out of that depression.
If I have a problem, the group tries to sit down and explain to me how they can help me and what-and what I have to do to help myself.
One of the first questions we want to ask is, what do you want from an advisor?
How do we control our advisors to do what we want and have it our way?
One of the questions that came up this morning--and it was Larry's question--was, "How do we get what we want from an advisor?"
And that's really a job for you three or four because maybe you should think about what you want from people like Frank and I.
That's a tag we're always wearing, that we're controlling what's happening, we're manipulating, but…
Being an advisor is an ambitious task that involves taking many different roles. Depending upon the needs of the self-advocacy group, the advisor may serve as a facilitator, a problem solver, or an enthusiasm builder.
But at the same time, the advisor must be careful not to offer too much direction, for the group, by design, is intended to be run by the members.
The advisor needs to adopt the philosophy that, to the extent people with developmental disabilities are viewed as passive and incapable, that is what they will be.
And to the extent that they are recognized as contributing human beings, that is what they will become.
List of what an advisor should do. Number one is help us when we need it. Help a little, but not too much. Two is let self-advocates run the group. And three, tries to understand how self-advocates work.
I find that, in that process, in some ways, I'm…
Help, I think is my role.
I play the role of a clarifier, and of a facilitator, to-- and, you know, encourager. At times, you jump in as a problem solver.
And I feel like my role has been to try to let--and developing--helping develop new leadership, that their role is not just to run the meetings and to take all the responsibility on themselves, but to help build leadership within the group and include everybody to whatever level they're able to.
And, I mean, that process has been really slow. But it's starting-- it's starting to happen.
But it seems to me, part of what we're trying to facilitate is the creation of peer models, so that people will no longer model on us, collectively, but will be content to model on their peers.
Sometimes, helpers can be too--too much helpful.
I'm wondering--that's one of my fears--the roles--the role of an advisor. I mean, either pushing the group too much before they're ready, if they're--you know, or backing off from getting involved in anything, because that person's afraid too, or that person isn't confrontative, or--you know what I'm saying?
Yeah, that's--yeah, we bring ourselves into it.
That's right.
How we can overcome that? That helpers just sit back in the background and not even--not even--like, helpers should be sitting back in the background and let self-advocates do the work.
And it's difficult, because you want--you know, as an individual, and as a concerned individual, committed individual, you want to say something, and you very possibly do for a while.
But it's--you have to learn to lay back. And I think possibly being so enthusiastic in this new field of work has meant that sometimes, I've, you know, been over-intrusive.
Walking the fine line of offering assistance while at the same time clearly remaining aware of when to stay in the background is the challenge the advisor continually faces.
It is very easy for self-advocates to allow themselves to be dominated, so the advisor must always encourage members to take as much control as they possibly can, even when it means differing from the advisor.
I often forget, and then I'm reminded again of how responsive people are to what I think or what I feel or whatever, and everyone in the group almost--even if I try to say that that's--it's not necessary.
I mean, if they think that something's going to upset me or that I'm not gonna approve of it, it's--
They won't say it or they won't do it.
Yeah. Yeah. And the power that you sometimes feel--I feel that sometimes I have.
Yeah.
Which I didn't ask for, particularly.
Right. Right. I have to--and it's very hard to try to teach people. I mean, you're trying to teach them not to respond to you, and basically, that is what you're trying to do, and yet, of course--
You still want to be a part of the group.
Yeah. And the fact that is that your respect for them is often very--a very powerful thing that enables the growth. And so you want them--I mean, you don't want to say, "Don't respond to me at all."
It's just that it's really hard to get that equality, or to know when it's there. It's very-it's very easy to go either toward sort of taking over. That's very easy to do.
Or, on the other hand, to just stepping back and saying, "Well, I'm not important in this group, you know, as a supporter."
It's a very fine line, I think. And I think it's not-it's not only hard for us in trying to figure out, as the group moves along, what our role is.
Yeah.
And it changes so much. But I think it's also hard for the group.
Mm-hmm.
Because, on one hand, we are being supportive of them and helping them along and teaching them the skills they need, and then all of a sudden, we're saying, "Well, it's all up to you." I mean…
Right.
At some point, that whole issue comes up.
We would like help from support people, but we would like to be able to speak for ourselves first.
[cheers and applause]
My name is T-Bone Halley, and I work for the Mental Retardation Division of the Health Commission in Victoria, so I'm your classic conflict of interest case.
If advisors work within the service delivery system while are connected with a parent or professional advocacy organization, they are apt, at one time or another, to experience a conflict of interest.
Generally, this dilemma occurs when a self-advocacy group takes a position which is in direct conflict with an agency policy.
I'd really like us to talk about the conflict of interest issue, because--and I'll just tell you what my opinions are. I guess, what I feel is that no matter who you are--well, I think it's important to avoid conflict of interest when--to the extent possible.
But that actually, no matter who you are, you always have some potential conflicts of interest. If you--whether--even if you don't work for an agency, you may have other things that are very important to you that could become a conflict with what the group wants.
And so if your real loyalty lies with the group and the peoples' growth and the peoples' development and the peoples' own thoughts and wishes, then that clarifies that for me.
I don't have to think about, "Well, the ARC isn't going to like this, or where I work isn't going to like this," because I know that, actually, I know what I would choose. So it's not as much of a conflict, as long as I know that.
I've had to go through a long period where I had to know that I would choose, you know, one over the other, but it's--I don't feel, now, that if I worked directly in a service providing agency, that I would have as much of a problem, because if it became a conflict, I would choose the work with self-advocacy over the other things, and I think a lot--you know, maybe many of us come to that in the long run.
And I think, like Bonnie was saying before, the way you have to examine your own attitude to the people you're working with, no matter who you work for.
Becoming an advisor means putting one's self on the cutting edge of a movement that sees people with developmental disabilities as the best experts on their own limitations. This involves providing continual support, so that members may claim a sense of personal power and recognize their worth as community citizens.
It means doing a lot of hard work yet staying in the background. But the reward comes when the group begins to identify their common concerns and problems, make their own decisions, and speak for themselves.
You know what I have in mind? I have this picture of the ideal advisor. You know, what an advisor really is supposed to be. And then, you know, I measure. And, of course, I always come up short.
Short.
[laughter]
And then, when I meet people and get to talk like this, I realize that there isn't any ideal advisor.
I think that there needs to be a trust between the advisor and the people, and that the group also pick the advisor, 'cause it just makes it that much easier, and the trust is already there. 'Cause if you don't have the trust, then you're not gonna be able to communicate with each other.
[applause]
Okay, well, why don't we get started with our meeting? I'm really glad that everybody could make it. This is our first officer training meeting. I'm wondering if anyone has any questions about their new role before we get started.
I do.
Sue?
I've never been a secretary before, and I would like to know how to go about it. Maybe by pictures or signs or something like that. Well, gee, Sue, that's no problem. I have several really good suggestions that people have made and have used in the past.
Why don't you and I get together after our meeting tonight, and I'll show you some of those?
Okay, great.
Officer training is vital to the success of a self-advocacy group. It is a time when the advisor assists the members in developing the necessary knowledge and skills to run their meetings. Most people with development disabilities have never had the opportunity to participate as an active member or serve as an officer in an organization, so officer training is the time when the advisor takes the role of teacher and helps prepare self-advocates to become leaders to their peers.
A self-advocacy group functions pretty much the same as any formal organization, with a president, a vice-president, a secretary, a treasurer, and a sergeant-at-arms, all of whom serve a set time of office.
Providing each officer with a written handout about their role and then reading each description as a group will help them gain confidence.
"The treasurer needs to know how to count, add, and subtract money. This report is calledthe Treasurer's Report. The treasurer puts the chapter's money in the bank and keeps track of the money earned and spent by the chapter."
"The treasurer goes to the officers meeting and helps plans the agenda for the chapter meeting."
Thanks, Debbie. That was great. Bob, since you've been elected our new president, why don't you begin by reading what your new responsibilities are?
Okay. "The president opens the meeting and asks the members to introduce themselves. The president asks the secretary to read the minutes of the last meeting. After the meetings are read, the president asks the treasurer to give the Treasurer's Report."
Great. Thank you, Bob.
By taking these roles, self-advocates learn how to run their group, and they also develop an understanding for how most formal groups are organized. During the officer training meeting, the complete agenda is drawn up so that everyone can follow along.
It is helpful to use picture symbols for non-readers in the group. And reviewing the rudiments of running a meeting will help officers feel prepared with their responsibilities at meeting time.
It looks like we're gonna need to vote on whether or not to have another bake sale. Is everybody clear on the voting process? What's the first thing that we do when we have a vote?
Someone has to make a motion.
Right. Someone makes a motion. And then what happens next?
Someone needs to second it.
That's right. And then what?
And then we have a discussion, and then we take a vote.
That's right. Everybody understands the voting process perfectly. Are there any other questions?
I need help on my Treasurer's Report.
Okay, Debbie. Let's see what you've got here. Well, see, it looks like we earned $40 at the last bake sale that we had, and so you want to add that to the $200 that we already had in the account. And then that'll give us a balance of $240.
I understand it now.
Good.
Officer training represents a lot of hard work for both officers and advisors. But it can also be a lot of fun. People First of Washington developed a board game that teaches players how to run the meeting.
The game is modeled after Monopoly. Players draw question cards that quiz their knowledge about running a meeting as they move their pawns around the board. Advisors are urged to be creative in coming up with different training tools for teaching officers these new skills.
The ultimate goal of officer training is to make it unnecessary for advisors to conduct the meetings in any way. As self-advocates become experts at their officer roles, they will provide peer training to new officers who are elected to follow.
Which card goes first?
all: Motion.
Where does it go?
All: First.
[All speaking at once]
All right, where does the second card?
All: Second.
Where does it go? Where does it go?
[all speaking at once]
Where do you want to put her? All right, what's the second card then?
[all speaking at once]
The third?
[all speaking at once]
Okay, the fourth? Put him where you want to put him.
[all speaking at once]
You go over here. You go over here.
All: Yay!
We are so happy to have you with us today. People from all over the worldwill be working and talking together at this conference. Are you ready to speak up?
All: Yes.
Are we ready to speak out?
All: Yes.
In July 1984, self-advocates from the United States, Canada, England, and Australia gathered together to hold an international self-advocacy conference. Planning and running a convention on either an international or state-wide level is a dramatic activity.
It is helping many self-advocates learn self-empowerment and self-assertiveness skills.
Good afternoon, my name is Doug Hentlen from [inaudible] and hello to you from Australia!
[cheers and applause]
A recent national survey revealed that 11 states hold periodic conventions, and current information collected at the University of Oregon indicates that Canada and Australia are beginning to hold conferences as well.
The self-advocacy movement in the United States was founded in Oregon in 1974, when a group of people with development disabilities decided to have their own convention. In the process of carrying out this event, People First was born.
During the months of organizing, members of the group had the opportunity to make key decisions, solve problems, and take a great deal of responsibility. They demonstrated to all involved that they were a competent and productive group.
Any town or city that hosts a self-advocacy convention is likely to learn that their attitudes toward people with disabilities are simply uninformed. Indeed, their perceptions of people with development disabilities will change tremendously.
[cheers and applause]
I'm really so happy to share this evening with you.
And on behalf of everyone in Lake County, I want to welcome you.
[applause]
I am so happy for you and for our children and for all of us, that you've decided to get right out in the mainstream, right here in the Hilton Hotel in downtown Eugene. I really thank you for that. I think you're laying a very strong foundation for your future, for our future, and I can assure that in Lane County, people are first.
Planning a convention needs to begin about a year in advance, to assure that consumers have the time they need to complete all the necessary details. It's a good idea to host it over a weekend, when most self-advocates and advisors are free from work responsibilities.
During the convention, a variety of activities occur, including educational workshops and socializing with friends. States that have a network of local self-advocacy groups schedule time when elections of state officers can be held.
Local dignitaries are invited to address the group. And of course, there is always entertainment.
[singing]
Something you got makes me work all day
Something you got makes me bring home all my pay
Bring home all my pay.
[singing] Something you got
[singing] Something you got
[singing] You ought to know
[singing] You ought to know
[singing] I said, my, my, whoa, whoa I love you so
The organization a convention requires might seem overwhelming. But actually, a group does not need a great deal of experience to get started. A few dedicated self-advocates and one or two committed advisors are the essential ingredients.
Once a date for the convention has been established, a hotel must be selected that is centrally located and the right size to accommodate the expected number of participants.
This can vary from 100 to 1,000 or more. And since a significant number of people will be in wheelchairs, room size, accessibility, and availability to transportation become critical issues.
The considerations involved in choosing a convention site are so numerous that it's helpful to develop a checklist. Members use this checklist when they tour possible convention locations.
Then, they can compare their findings to make their final choice. A valuable resource for this process is a local convention bureau. They can help the group to identify different possibilities and, in the process, learn about self-advocacy.
Other decisions involve choosing a theme, developing a banquet menu, selecting entertainment, and arranging for advertising. Financing the convention is also an important consideration.
Most hotels and conventions centers are willing to offer breaks to groups during their off-seasons. Individual participants are generally required to pay their own way through a pre-registration payment to the planning group.
States and provinces that hold periodic conventions report that self-advocates begin budgeting their money for their trip up to a year in advance.
As the convention date approaches, it is important to organize an in-service training for the hotel staff to familiarize them with the self-advocacy movement.
This helps to dispel certain myths about people with development disabilities, and it is also a time when members can talk with the staff about how they might best respond to the needs of their guests.
We try to keep everybody satisfied. Talk to them in a normal way without having-without having a big incident. We try to keep it smooth and nice.
That's nice.
And everybody usually tries to take care of their own luggage and all that.
Terry, about how much of your group attending will be in wheelchairs?
Well, we have about, I would say-I would say from 40 to 50. Just depends [inaudible] from one--like, from Portland to [inaudible].
I'm just saying, if we know that we have a number of wheelchair guests, that would help the front desk to make sure what rooms and every--way everybody can be accommodated in their rooms.
So we're just looking to see how many people. Also, at the dinner tables-- and Charles, I'm sure knows the answer to the question I'm thinking--
We usually leave about five or six tables with two chairs.
Right, where they have the access with the wider rows. So we just want to know…
Wheelchairs, right.
To have an idea.
Educational workshops are a primary focus of the convention and are usually run by the members themselves. Several months in advance, the planning committee asks individuals and groups of self-advocates to be responsible for conducting workshops.
Topics include problems encountered in living independently, learning about rights and responsibilities, how it feels to be labeled retarded. In some states, self-advocacy organizations require that these workshops be run by consumers themselves, with the belief that in order to develop their full potential, they must begin by speaking for themselves at their own convention.
In this way, the event is not only an empowering experience for those who organize it, but is empowering for those who attend as well. The sheer presence of their number in such active roles demonstrates to themselves and to us that they are truly people first.
Welcome, everyone. Glad you can make it. Are you enjoying yourself?
[upbeat trumpet music]