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.
3 Comments to Why does “advocacy” feel like a polite word for “fight”?
None of us wanted to fight the good fight for our situations in life, we were dealt cards in life and we drew a challenging hand, therefore we have to fight to win. You can do this, you were born and raised to be an advocate. Unfortunately, others will never know what you go through on a daily basis, and you will never know how easy it is for the majority. You are the chosen one, you can do it, and I love you. Mom
I felt like you were reading my mind when I was reading your post. I was just discussed in the New York Times Magazine because of my “advocacy” for my little girl that has global developmental delays. I can relate to you on every level. We had the opportunity to be a part of a new program at the National Institutes of Health called the Undiagnosed Diseases Program. My daughter has seen more doctors and specialist to try and figure out what is causing her not to crawl, walk, talk, etc. They asked if a NY Times reporter could follow us for the week we were there because she was writing an article on this new program. I thought that the fruits of my labor were finally going to pay off. The world was going to finally hear about Ragan’s situation and maybe someone might be able to help. Instead, this is the paragraph that was written about her in the 8 page article.
“When the Undiagnosed Diseases Program’s first pediatric patient, 2 1/2-year-old Ragan Thursby of Florida, was admitted in October, Gahl said he thought he recognized the signs of parents who would go too far, to the point of pursuing every diagnostic option, spending money they didn’t have and shortchanging Ragan’s healthy older sister. Gahl later realized that he was wrong. After the first day, Ragan’s father sought out Gahl to demarcate his own bottom line: his unwillingness to put his daughter through needless pain for uncertain benefit. At that point Gahl decided it must be Ragan’s mother who was driven, without limit, to find a name for Ragan’s profound developmental delay, no matter what the emotional and financial toll. But the week at the N.I.H. seemed to shift priorities in Ragan’s mother as well. “I’m finished now,” she said at the end of the week. She was at last ready to turn over the search for Ragan’s mystery to the N.I.H scientists, she said, and was heading back home to Tallahassee to do what Gahl suggested: to continue to fight to provide Ragan with the best local services she could; and to take a breath and just love her little girl.”
I cried for days because I felt like that there was not one person in the world that could understand my fight for her. If I didn’t spend my time researching for help, then what, help would just find me? Yeah right! I have to play that same role with all her therapist, doctors and the insurance company just as you have. It’s not anything anyone will understand until they walk a day of it. You are an amazing mom and I’m glad to know that there is another mother out there that I can identify with.
Sincerely,
Kasi Thursby
info@kasithursby.com
TawnyApril 25, 2009
Kasi,
YOU are an amazing mom! I get it, I get you, I know exactly how you feel!! Sometimes it’s just good to know we aren’t alone…that there are others out there struggling with the same issues that we are. I wish you all the best in your efforts for Ragan. She is lucky to have such fierce, determined warrior parents!
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National Vaccine Information Center (NVIC)
April 23, 2009