Even at 57 a deep sadness staggers me when I find myself realizing that the claim some make to being advocates for people with brain injuries is only true when it makes them look good, gets them attention, and or when they and only they are calling the shots. They are the lip-service advocates, advocates when being advocates is comfortable, risk free.
Real advocates in the world of disability, and I know quite a few, Bruce Darling who heads up the Rochester, New York-based Center for Disability Rights, comes to mind, will tell you advocacy can be scary, lonely, unsettling, heartbreaking, angering, and, at times, joyous. It is, they will tell you, anything but easy. You have to be willing to go into the dysfunction storm, not flee it the moment it appears.
It is, sadly, not unique that there are those who, needing to feel a sense of control in their life, gravitate to the world of disability because large swaths of society’s so-called support systems make those of us who live with a disability controllable. Want those services? Want that wheelchair? Want that assistive technology? Want to come to our conference? Want that subsidy? Be prepared to pay the piper which, in part, will require your willingness to sing our praises, even though we don’t deserve them.
Not a price I’m willing to pay.