Lupus Canada Advokit

Taking Control

Many of us with chronic conditions or disabilities feel that we have far less power or control over our lives than healthy people have.

Income, health care, transportation, housing, access to recreation and education all seem to be in the hands of others.

The "system", often with the best of intentions, can treat us as if we were incapable of making the same decisions about our lives as someone who does not have a chronic illness.

When we are advocating for ourselves, we need to take back control and reclaim our right to have a say. Working on behalf of someone else, we must make sure that the person has the opportunity to take an active part in decision-making. That's what "empowerment" means.

Services

Services funded by government - federal, provincial and local - are paid for with tax money. Every Canadian pays for them. You need to keep this in mind when you face rigid or patronizing people administering them.

Your best tool for dealing with agencies is information. The more you know, the more intelligently you can advocate. This applies not only to governments, but also to private agencies and services.

Organizations have rules and regulations created for the most typical situations.

Because persons with lupus vary widely in their needs, they don't always fit into any of the "pigeonholes" that organizations have created for people with chronic conditions or disabilities.

You as the advocate can help find creative ways to provide appropriate services. To do that, you need to find out as much as possible about how the organizations and services operate in the community.