I know I am wounded by the advocates' language. What I want from those who love me is not sympathy. I want my family members to welcome me, as me, just for being me. And I want to hear the language of respect. Family advocates shape and use words and ideas in ways that seem to me to change the meanings so much that for the sake of clarity, different words should be used.
Family advocates regularly breach privacy by telling their children's stories.
These stories are not family property. They belong to the primary patient, not to the family. But family advocates tell of their loved one's labels and behaviors. So urgent are the wishes of active family advocates for personal relief that they use their children's voices, disallow independence, and sensationalize their children's anti-social activities. I have never heard family advocates assert that they have informed consent to tell these stories.