The philosophy and ethics of advocacy
This discussion of the philosophy and ethics of advocacy was written originally for a training session with a group of parent trainers with the Family Network on Disabilites of Florida, Inc..
I. WHAT IS AN ADVOCATE?
We think of ourselves as parent advocates. We might use other words, like “Parent Trainer,” “Parent Resource Person,” etc., but in the end we are essentially advocates. For us to be effective advocates, it is essential that we have a sure, firm grasp of exactly who we are and what we do as advocates. One might begin by examining the things that advocates do, but I feel that for an advocate to be truly effective, he or she must first have an accurate sense of the more relational nature of the advocate’s role. If we truly understand who we are, our identity as advocates, we will better know how to effectively “do” what we must do as advocates.
I find it helpful to first establish a definition of an advocate. If we look in a dictionary we will find the following definition:
Advocate: “a person who pleads on behalf of another,….. a person who speaks or writes in support of some cause, argument or proposal.”
This definition still leaves one with only a description of what an advocate does. We still need a greater sense of who the advocate is. The ancient Greeks used a word for a special kind of advocate which was very descriptive of whom I believe that a parent advocate must be. From “para,” the Greek for “beside,” and “kalein,” for “to call,” the Greeks created the word, “Paraclete.” This word was then used to describe “one who is called along side to help or comfort.” In the Bible this word was used powerfully to describe the Holy Spirit or the Comforter, as one who comes alongside to help.
Used in this way, an advocate becomes more than someone who simply argues or pleads on the behalf of another. The word “paraclete’ evokes the image of an individual who in a time of need, comes alongside another, offering support, encouragement, direction, and comfort. You can see that from this perspective, the concept of an advocate is more relational than functional. The relationship drives the function. We do what we do because of who we are, more than what we are.
Once we start examining the role of the advocate as a paraclete we will find that this concept gives us a lot of direction about how we function as advocates. We will see that the advocate acts from alongside the one he is helping. The maintains a spirit of calm confidence, lending strength, courage, determination, knowledge and wisdom to the other, without dominating or controlling the onebeing aided. The true paraclete acts through the individual he is helping, not in place of that person. He provides the elements that the parent needs to be an advocate for his/her own child, equipping the parent so that the parent can act effectively.
II. HOW DO WE ADVOCATE?
It is very easy for a person who has the responsibilities of an advocate to lose sight of his or her true role. In order to be effective we are trained in the relevant law and the rules of procedure. We follow the latest cases and decisions. We gain experience and knowledge often far greater than even the educational professionals on the other side of the table. We learn to speak with confidence and persuasion. We learn to spar, and develop strategies. We become battle scarred and tested. We see the bigger picture and every action becomes part of a bigger battle. We are used to people listening to us and following our advice. Often school officials listen to us, even when they have refused to listen to the parents themselves. At some point we come to believe that we have arrived, we are ADVOCATES.
If that were true, then one would have little of value to present to make us better advocates. It is, however, at the point when we believe that we have achieved the status of Advocate, that it may serve us most to refocus our attention upon some of the most subtle and most powerful elements of true advocacy. This is a good point to grasp: the very elusive but vital, relational role that we are called to assume. If we can maintain a visual, sensitive image of the advocate as a paraclete, we will have a powerful guide to direct us as we assume this incredible role of advocate for children with disabilities.
A. WE ARE A SOURCE OF COMFORT/PEACE AND STRENGTH
1. We Understand:
By the time that parents come to us they have generally been treated as though they are being unreasonable, ignorant, over-demanding, etc. There is a certain comfort to parents in learning that not only are they not the horrible image projected by the school, but that they have an important, essential place at the educational table. We have a vital role in reaffirming the parent's desire to be fully involved in the education of their children. This is not a vague “I’m Okay, You're Okay” kind of thing, but a true affirmation of the parent as his/her child’s best advocate. This is true even if the parent has been somewhat difficult and/or unreasonable in some of her/his demands. He/she is still his/her child’s best advocate. They need to know that we recognize and respect the rightness of their role, and that we will insist upon others doing so as well.
2. We bring peace and comfort:
The fight for the educational rights of one’s child is a frustrating, infuriating experience. Parents go through the full range of emotions from a sense of betrayal and frustration with senseless obstacles and insensitivity, to rage at the actions of schools and teachers. As mentioned above, the advocate brings the soothing balm of understanding and compassion to these emotions. He/she understands the emotions, the hurts, and the anger and helps the parent deal with these things.
The advocate should never allow him/herself to join the parent in these emotions. He/she can and should have empathy and understanding, but must hold him/herself outside the swirling vortex of these emotions. Why?
No one ever wins when he/she acts out of anger. It does not matter how righteous our fight is. It does not matter how wrong and hurtful the other side has been. Our victory depends upon our calm, collected determination to reach our goals. Do not be fooled. Anger is not even a good motivator. Anger is the best way for us and our parents to lose sight of our essential purpose and mission - to obtain the best education possible for the child with disabilities.
I have had clients who were troubled by my lack of anger (or more accurately refusal to act out my anger) at school officials. I am convinced that we will serve our parents best by remaining calm, rational and steadfastly fixed upon our objectives. Furthermore, we need our parents to be focused upon these goals as well. When I first meet with a parent, we always sit down a write out exactly what the parent wants to accomplish or obtain for his/her child. This becomes our mission statement for that particular case. I have had the sad experience of actually obtaining agreement on all that the parent wanted, but because the parent wanted to punish the school, wanted the hearing office to know how bad the school was, we were not able to settle the dispute. In the situation that I have in mind, the parent went forward on her own and effectively lost everything.
3. We bring strength:
One might ask how an advocate should go about bringing comfort and peace to parents who are caught up in the turmoil of their emotions. First, I would say that our own understanding and empathy has a soothing effect. Secondly, our confidence and strength allows a parent to relax a little and breathe deeply. I have found that super-heated emotions almost always flow out of a sense of inadequacy, fear and hurt. We can come alongside with the message that they are no longer alone, but they now have a paraclete/advocate who understands them and their frustrations, who is going to help them deal with the issues before them.
Here is where our own calm confidence, our battle-scars, our knowledge can bring a sense of peace and security to a troubled parent. We cannot guarantee victory, but we can let the parents know that they are not alone and that we will be there to help them negotiate the dangerous confusing waters ahead of them. Our steady quiet demeanor can bring peace and comfort. Think about it. If you go to see a lawyer, do you want someone who gets excited and angry with you yelling “Sue the Bastards!” or do you want the quiet, firm professional who tells you that he has dealt with these problems before, and he is going to help you deal with them?
4. We bring balance.
It is easy for parents to become paranoid and negative about the entire school system. They distrust all the professionals and refuse believe that any of these people could possibly have the interest of their child at heart. Unfortunately, the parents often have rather good reasons for feeling this way. Furthermore, our own experience with some of these individuals reinforces the negative perception of their professionalism and motivation.
Still, the undeniable truth is that our objective is to obtain the best possible education for the child and almost always that education will depend upon the professional services of the schools and professionals that we are struggling with. Whatever truth there may be in our grounds for mistrusting these individuals, we still need them and their services. Beyond that, with exception of a few seemingly irredeemable individuals, most educational professions have on some basic level a desire to serve and educate our children. They may be hampered by their own egos, budget problems, old methodology, professional arrogance, etc., but if we can evoke the altruistic motivational core that caused these individuals to go into education, we can obtain more for our children.
One of the most valuable things an advocate can do is to help the parents reestablish a sense of balance and pragmatic compromise. As we help parents focus upon the educational program and the individuals who will be responsible for carrying it out, it becomes clear that anger directed at the educational professions (no matter how well merited) is counter-productive at best. I would go as far as to say that one of the most valuable roles an advocate can play is in soothing the ruffled feathers of educational professionals and calling both sides back to the essential importance of the individual child at issue.
It may seem to be a shocking form of cynical crassness, but I have actually pushed parents to “kiss and make up,” and to apologize, when it was the last thing that they wanted to do, or for that matter had a moral obligation to do. My only excuse is - I wanted a particular educational plan for the child and if that is what it took to get the plan and to get it effectively implemented, then I was ready to do it. This is what I call the “single-minded determination” that must the strongest weapon in the advocate’s arsenal.
B. WE BRING KNOWLEDGE AND INFORMATION
1. The Power of Knowledge
We cannot underestimate the value of the knowledge that we bring to the parents which we serve. I would venture to say that a large part of the frustration and anger parents experience boils up from a sense of lack of power and authority in the school-parent dynamic. Teachers, therapists, administrators tend to speak down to the parents. They use educational techno-babble which confuses parents and places them in an inferior position. When parents attempt to exercise their rights to participate in a meaningful way in the development of their child’s educational program, they are too often treated as second-class citizens and unwelcome participants at the table. They find themselves effectively blocked and frustrated with regulations, guidelines, programs and the old “it’s the law” approach. They may sense that their right to participation has to mean more than this, but they have no idea how to access their rights.
It is said that “knowledge is power,” and nowhere is this more true than in the arena of parent participation in planning the special education of their child. Schools have developed a comfortable way of doing things and parent participation is viewed as a negative rather than a positive factor. Far too often, schools have become experts at neutralizing parents and effectively pushing their participation to the side.
Schools can only do this if parents remain ignorant of their rights. To the extent that we are successful in educating parents as to their rights and in how to “work” the system, we will have contributed vitally to making the school/parent partnership a reality. Parents who learn the basic rules governing the education of their child can become effective advocates for their own child. They will learn how to request services, the necessary steps required to obtain services, and how to get past the “We do not have that program” and “your child is not qualified” roadblocks.
In my estimation, the very presence of a trained advocate in school/parents meetings will very often change the whole tenor of the meeting. When school officials know that the parent or his advocate is well versed in the system and the law, they will often skip some of the initial gamesmanship.
2. More a source than an instrument, of knowledge
While the parent advocate must of course be well trained and informed his/herself, this is only the beginning in the making of a true advocate. It is not enough to have the knowledge; the advocate must also understand how to use it. This takes us back to the concept of the paraclete. In the parent’s experience the school was the repository of educational knowledge. The school told the parent what the law was, how much the parent could participate and what services the child needed and could have. The parent does not now need the advocate to replace the school in this dynamic.
Instead, the advocate should be a resource of information for the parent. The advocate provides the parent with the essential information the parent needs to make informed decisions. As we have said, the advocate comes alongside to help. The advocate is that gentle whisper of information in the ear of the parent; the coach who prepares the parent to fulfill his/her parental role.
This is probably the hardest part of being an advocate and I am sure none of us get it right all of the time. Most of us have to continually work at it. We need to constantly self-monitor. Are we spending enough time listening to the parent, the school? Are we talking in place of the parent? Are we showing off our knowledge rather then using our knowledge to effectively open doors for the parents?
When I taught special education this same kind of issue often arose between my assistants and myself. In my class of profoundly handicapped students, I wanted my students to learn how to self-feed. My assistants wanted to feed the children themselves so we could get through lunch more quickly. I would ask my assistants, what is our objective, our goal? Is it to get the food into the kids or is it to teach the kids to feed themselves? When they naturally replied that their goal was to get the food into the kids, I would ask them if they were ready to sign on to always being there to feed these kids. If not, then we need to teach the children to feed themselves.
Advocates are the same. We cannot always be there for our parents. This being true, parent training must be part of our advocate mandate. While a component of such training may be found in the seminars and parent training done by STAND, Inc., the advocate has an even more grass-roots training responsibility. We should constantly work at encouraging the parents to seek out sources of information for themselves and to become personally versed in the knowledge essential to the education of their child. We should resist allowing parents to put responsibility for action upon us, claiming ignorance. As we come alongside our parents, our ultimate goal is to prepare them to act independently of us. To do that, the knowledge must become their own.
Very closely allied with knowledge is the advocate’s role in providing direction to parents. Again the advocate is armed with experience that allows him/her to analyze circumstances, to understand what is happening and to develop a strategy to accomplish our goals. The advocate could come in like a general, and lead the parent through the process necessary to obtain the desired educational services. Hopefully, we understand that this is not the true role of an advocate. Such action will leave our parent at the end of the exercise as incapable of managing the educational planning for his child as he was at the beginning.
The parent should always remain the decision-maker in dealing with school authorities. While the advocate may provide or help the parent obtain the information needed in order to make informed decisions, the ultimate decision responsibility must remain with the parent. By explaining how the school procedures work and helping the parent obtain the needed evaluations and information, the advocate can teach the parent how to analyze their position and how to make good decisions for their child’s education. Remember, we want to build parental skills which will allow them to continue giving direction to their child’s education.
There may be some temptation on the parent’s side to abdicate their decision-making responsibility to a trusted advocate. While this is flattering, to allow it would be a disservice to the parent and the child. The child with disabilities needs to have parents who are taking the full responsibility for participating in the child’s education. Only the parents have the vested, life-time interest which is necessary for good decision-making. You are to be alongside the parent, not out in front.
Note: Personally, I feel that the advocate should be very careful about putting their own personal educational philosophies and positions into the decision-making. One year at a COPAA Conference, there was a panel discussion session which considered the issue as to whether an advocate represents the parent or the child. The suggestion was that if the parent wanted something that the advocate did not feel was in the child’s best interests, then the advocate must represent the child and should oppose or refuse to represent the parent’s position. Various individuals spoke of applying this principle to issues of inclusion, age appropriate education, home school, etc.
The parent already has the school telling them that they know what is best for the parent’s child. The parents do not now need their own advocate to dictate what is best for the child. I think that an advocate can share educational best practices, can provide pro and con information about different issues, but in the end it must be the parent who makes the appropriate decision. I believe that as an advocate our role is that of empowering parents to participate in their child’s education, not to dictate to them how to participate.
In any discussion of the role of an advocate we must consider situations in which school authorities engage in severe and harmful actions against the interest of parents and children with disabilities. We have probably all encountered circumstances where school personnel have attempted to bully, threaten, intimidate or otherwise harm the interest of the parents. What do we do at that point? How can we continue to take what would seem to be a rather passive, advisory role, when it seems that what is needed is a more aggressive, protective role?
In answering this question, I will begin by admitting that this is probably one of my weakest points. I do not like bullying by anyone and I have a natural tendency to throw myself into such a situation like a mother-hen protecting her chicks. I feel good doing it. My parents probably feel good having someone take up their defense. The problem is, the objective for the meeting was probably not for the advocate and the parents to come away with a righteous, feel good feeling.
So what should the advocate do in such circumstances? I would still say that the best practice is to leave the parent in command. Remember we are training this parent to take care of him/herself in the future. We should ask ourselves what action would be appropriate for the circumstances and if there is any good reason why the parent could not take the necessary action him/herself. We must not forget that if the parent is the one who takes the protective action, that parent will be trained and empowered to do it when the advocate is no longer there.
Personally, I have a number of ways to deal with inappropriate behavior in meetings. I teach parents to always tape record meetings. This practice in and of itself tends to reduce acting out on both sides. Since there is almost always a “note taker” writing up the conference report, I teach parents to be pro-active in requesting that certain comments, statements and actions of participants be written down. I encourage parents to take strategic “breaks” to allow time for cool down, consultation, and regrouping. I educate parents on how to terminate a meeting that is getting out of control and how to protect the record and their procedural rights while doing so. I try to prepare parents not to be reactive nor to allow themselves to be provoked.
Sometimes this procedure requires numerous “side-bar” consultations between the advocate and parent, where the advocate helps the parent analyze what is happening and what the appropriate optional responses might be. The parent then chooses the response he/she feels most comfortable with and then goes back to the table and initiates the response. It takes longer, but the parent remains the individual the school personnel must deal with.
Finally, let me suggest some simple strategies for keeping the temperature down in school parent meetings:
1. Plan ahead of time. The advocate and the parent should discuss upcoming meetings and plan their objectives (what they hope to accomplish). This is your agenda and it will set your attitude for the meeting. You may be hoping to reach a satisfactory compromise on an issue. You may wish to inform the school as to your desires, requests or view on certain issues. You may be attempting to receive a definitive response to a specific request. Whatever your agenda it should be very clear to you and you must take care not to lose sight of it.
2. Attempt to calculate a reasonable expectation for the meeting results: Here the parent will need the advocate’s experience. What can they reasonably expect to accomplish? This step is vital. One of the major causes of stress in school/parent meetings is the desire to reach unreachable objectives. For example: Parents who go into an IEP demanding full inclusion for their child with Down’s Syndrome, when you know that the school has never allowed such a thing and has been resisting this request for two years.
In such a case does the parent give up on his/her request? No, but the parent does not expect that the school will suddenly cave-in and grant the wish. Instead the parent sets a goal to formally state his/her request, receive a definitive yes/no response from the school, and/or indicate the parent’s intention to seek due process consideration. Can these objectives be accomplished? Probably.
3. Have your alternative action plan ready. Anger and frustration boil up in parents when they are met by unyielding delay or refusal in school meetings. Knowing what alternative actions the parent has available (and is prepared to take) in advance of the meeting helps keep the parents and the advocate calm. It is the nature of school/parent meetings that no one can force anyone to do anything. However, there is almost always a due process procedure to enforce parental rights where school personnel are recalcitrant. This allows the parent and advocate to receive the school’s refusal with good grace and then simply take the next appropriate action.