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Professional Ethics for Special Needs Parent Advocates

By Pat Linkhorn

Parent advocates for special needs children should have a professional code of ethics that permeates their actions.

They don't have a degree to qualify you as a professional parent, but the world of Acadamia would be hard pressed to teach through courses what we've learned first hand. No college courses, no matter how grueling, could promise to simulate the gut-wrenching fear and pain we have experienced as parents. Nor could it simulate an experience that would provide a person with the clarity of vision we experience when we face prejudice in its rawest form and all its injustice.

What makes a parent become a "professional" parent? Initially, we all start by fighting our own battles. Somewhere along the battle line, we begin to see that others are still where weve come from. A truly compassionate person has such a capacity for empathy that the pain of all those others is added to our own burden, so we continue to fight the battle, even when our child has passed that stage. That is where the knowledge we've gleaned firsthand gives us the right to speak for others. It gives meaning to the heartache when what we have learned can help others.

But, with the right to speak for others comes a tremendous responsibility. For when we speak for others, our actions become the actions of not just us, but of the masses. We must realize that others will be judged by what we do and by how we do it.

In the world of disabilities, diversity is a highly valued trait, and one we should embrace by all means. However, within that diversity must run a common thread of professionalism that will gain respect and cause the movement to advance. Parents who engage in the role of "professional" parents should have a code of ethics that permeates their actions. As to what those ethics are, and even though each person will have their own personal values, the actions we take must reflect the bigger picture. It is not unusual for us to be rather single-minded at the beginning of each battle or cause we fight for. Single-mindedness is a necessary trait because it helps us to focus on what we are trying to change. Having a definite goal will help deter us from being talked into a less effective solution. It all seems to point to the methods we use to get to our goal and how much destruction we leave in the wake of our battles.

There are time when systemic, meaningful change can only occur through drastic measures. However, much of what we change, in order to be permanent and lasting, has to be subtle. The shift in the way many professionals see and deal with our children can't be made to happen, but must evolve. We must make believers out of the skeptics and make them believe that it was their idea to believe.

So, how do we do that? The best advice I ever received about how to get others to buy in to what I believed was, "Give them something they need for nothing." So, we make ourselves invaluable to them by our services and advice that benefits them without causing them to have to work any harder. If at all possible, we do it in such a way that it seems as if it was all their doing. We stand on the sidelines as they bask in the glory of what each change has wrought. On a subconscious level, they might realize that we are responsible, but the lure of the spotlight will, in most cases, combine with the ego and make that a moot point. Always remember to thank them for their advice and help, and preferably in a public manner. Diplomacy. Period.

Although I see this as one of the basics for the professional parent, I have difficulty being diplomatic at times. I'm more inclined to want to cut the chase or heart of a matter rather than quibble over a sequence of words that lead to a conclusion. Whereas many professionals seem to want to discuss for the sake of discussion, rather than for the sake of reaching a meaningful solution. I try to carefully choose what I stand up for and to always ask if what they are proposing is based on how the real world operates. Thats where many of my experiences give me the insight they may lack. And Im there as their reminder that what they decide actually impacts "real" lives.

One of the pitfalls for the professional parent is that no-one is going to like what you do all the time. Some people will oppose you every chance they can simply because they don't like you. (Or parents in general.) Personal agendas have no place in the lives of professional parents. We cant afford to be baited and become involved in battles of personalities. Thats another reason why having a definite goal is important. If you can envision your goal, you will realize that becoming involved in petty personality conflicts will only delay reaching your goal. You then circumvent this person, or your course of action. Its not always possible to do this, but if you do have to engage in personal conflicts, you have to decide:

1. Who will benefit from the conflict?

2. Who will emerge the winner in the eyes of the majority?

3. Is it worth the time and effort to win the battle?

4. How will it affect those who come after me?


Pat Linkhorn was an advocate/trainer/information specialist with the Ohio Coalition for the
Education of Children with Disabilities. She is also an experienced parent and has two girls with special needs - autism and blindness due to prematurity. She is the author of Off the Fence : Disability Advocacy

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