Lupus Canada Advokit

Individual Advocacy

People use the word "advocacy" to describe a broad range of activities. Let's go back to the definition at the beginning of this kit:

"Advocacy is helping yourself (or someone else) get what you (or they) are entitled to".

Even in a perfect world, where systems work and needs are met, there will always be people whose voices, for one reason or another, remain unheard and their needs unrecognized.

Advocacy is based on the principle that each of us has the right to be heard, to understand and to be in control of how we are treated. This applies whether we are advocating for ourselves or for others.

Often, getting what we need is simply a matter of knowing where to go for advice or an answer, or finding out what is available and applying for it.

There are situations, though, when getting what we need requires that we convince someone, or defend our rights and challenge a system that can seem rigid and unfeeling.

Styles of Advocacy

There are as many different ways to advocate as there are advocates. Some people are good on the telephone, others deal better with difficult situations face to face, and others are more comfortable writing letters.

There are situations where each of those styles or methods, or a combination, can be useful. With practice, we each find the style that suits us and that gets the job done.

Among an advocate's best tools are information (you don't have to know it all, but it helps to know where to find it) and having a plan. Through planning, you are more likely to succeed in putting your point across.

It is helpful to think through a situation and decide how best to handle it, a step at a time. You may need to talk with someone about how you plan to take action, or have someone read a letter you have written. Sometimes it helps to do a dry run: "If I say this, what will the other person say?"

Support

Support is important, at all stages - from diagnosis onward - and at all levels. There are supports available, starting with the lupus associations and Lupus Canada.

Lupus associations deal with a variety of questions and problems, reassuring callers that they are not the only ones who have ever faced that particular challenge.

A few of the issues and questions that come up most often are dealt with in this section, as well as other information that could be useful. It is impossible to cover everything in this small volume, but the suggestions included here are based on first-hand experience with lupus, and are guidelines that people have found helpful.

Support is also available through other organizations dedicated to helping people with disabilities and specific conditions.