I've been learning how to self-advocate over the past few years and I believe, finally, I may just be getting better at this. I have several doctor's appointments today and tomorrow and after having almost died (see my previous post, "Being My Own Advocate Saved My Life") due to my trauma team not listening to me, I had obvious concerns about my patient care after my last surgery on May 16th.
So here are five tips I've learned from other advocates along with trial and error and I plan on using on my doctors' today and tomorrow.
1) Write down all your questions before your appointments and ask that the doctor spend the time with you to answer them all to your satisfaction. Take a pen and write down any additional questions that arise during the discussion.
2) Practice asking your questions with a friend or another advocate such as a peer parent or peer youth. They don't need to have the same problem, but they can provide great feedback into how you deliver your message. This will help you keep your calm during the meeting. Getting angry only sets the discussion backwards.
3) Assure the doctor at the beginning of your appointment that you respect him or her's expertise, and that you are also asking him to respect you.
4) Let the doctor know that you are the center of care and that no decision will be made about you, without you at the beginning of your appointment. This is the mantra of the disability community for a reason: it's key to living successfully with a disability.
5) Be honest with the doctor on any concerns you have and don't be afraid to express them.
And stick to your guns. Many people are conditioned that doctor's are in a position of power and they are not to be questioned. However, doctor's are human and make mistakes, just like all of us. So don't let the doctor ignore or dismiss your concerns - be sure to continue the discussion until you are satisfied with the plan.
For many of you, much of your self-advocacy happens at school. You can adopt the same five tips but switch out "doctor for "teacher" or "counselor" or principal" or whomever you are meeting with. ASK Resource has some great tools to help guide you learn about your rights as a parent with a child who need's special help as well as tips on education plans, etc. You really need to check them out.
Look for my next post to let you know how my tips worked.