transportation
Why does “advocacy” feel like a polite word for “fight”?
It occurred to me this morning, on the heels of yet another issue with Quincy’s bus transportation, that being an advocate is really nothing more than being a warrior for my daughter. Problem is, it is tiring being a warrior all the time. Parents raising kids with disabilities will tell you that if you simply trust the systems to do what is best for your child, the system will inevitably fail you. I have yet to encounter a system, be it transportation, education, insurance, medical, etc… that has done the right thing for my daughter unless they were pushed to do so.
This is not to say that there aren’t good individuals within these systems that make every effort to do what is right. In fact, if it weren’t for these people, who work within and know what should be done, then my fights would be much more difficult. For effective advocacy you first have to find these people, build relationships with them, do all you can to show them you are smart and reasonable and not a crazy lunatic, and then assess when it is appropriate to seek their help and when it isn’t. If you complain too much or too often that diminishes your credibility. But, if you are too quiet and don’t speak up enough, you are labeled a pushover. You have to find the line and walk it carefully.
But, this is not a post about how to be a good advocate, but more a rant about why my life has to be so much about advocacy, or polite fighting. I don’t want to fight for proper transportation, I don’t want to fight for an appropriate transition to high school, I don’t want to fight the federal government to stop making vaccines that cause horrific collateral damage to innocent children, I don’t want to fight my insurance company to pay for durable medical equipment. I don’t want to fight at all. I want to watch my children grow and learn and be challenged. I want the world to be a safe place. I want people to respect the needs and rights of those who need help.
If I give up the fight (which I am very, very good at) then there is one less voice out there standing up for those who can’t stand up for themselves. I am not an advocate by choice, but by necessity. I did not ask for this job, it was thrust upon me when Quincy took the fall so other children could be protected from pertussis. Today, I resent my role. Tomorrow, maybe not. One thing is for sure, whether I like it or not, I will never stop fighting for my daughter. I can only hope that the battles that I win today will make the world a better place for others tomorrow.
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National Vaccine Information Center (NVIC)
