Without advocacy we cannot change a damn thing

lily-tomlin-quoteWithout advocacy we cannot change a thing.  Heaven knows there’s a lot that needs fixing, changing and bettering in our world today.  Sometimes the changes are small and just need a little push.  But many times, a small push won’t cut it.  Big changes require big advocacy and advocacy requires boldness and bravery.

When I first started advocating for my son, I believed that the school and mental health systems were built to provide services for kids like him and that those services would be delivered quickly and match his needs.  I paid – still do – a hefty sum each month for insurance (surely that would open doors?) and I knew I could make my case.  I figured I could rely on the goodwill of the people who were concerned about him.  I absolutely knew in my heart that these were the necessary ingredients for success.

I know you’ll be just as surprised as I was to find out that’s not how it works.

I lived in Southern California when my kids were young. When my son was seven he was in a regular second grade classroom.  He had already missed the second half of first grade because of phobias, depression and suicidal behavior.  He had had one pretty lengthy inpatient stay.  The school suggested that the school psychologist, Maryellen, evaluate him.

When Maryellen and I met, I felt nervous but sure that we would see eye to eye.  She ran through the test results and agreed with his diagnoses.  She added that he was very, very smart – his IQ was in the near genius range.  She looked me in the eye and said, “High IQs tend to run in families.  His father must be very smart.”  I felt sucker punched and barely heard her say that she felt his high IQ more than compensated for his mental health challenges and therefore he didn’t need any help.  Later I realized I had experienced disrespect as a tactic to change the meeting outcome.  On that day an advocate was born.

Moments like these change things.  You realize the world doesn’t work the way you thought, people don’t act the way you imagined and instead of a straight path from point A to point B, it’s more like a hiking trail over rocky stretches, across streams, in rain, sleet and snow.  It can scare even the most intrepid hiker, but here you are taking the first step.   You learn not just to advocate, but to become an advocate.

It’s unlikely that you’ll get what your child and family need in the mental health world without advocacy.  People don’t rush to suggest services and insurance companies don’t agree matter-of-factly that you should get that treatment you identified.  You find out you have to make it happen.  You may become an advocate eagerly or reluctantly, by immersing yourself in knowledge or fighting every step of the way, but you change yourself.  You change your expectations, you change your definition of success and most of all, you change who you are.  As one mother said to me, “You become the parent your child needs, not the one you thought you’d be.”

Advocacy can be uncomfortable.  For those of us who didn’t raise our hands for the teacher to call on (because then everyone would look at you) or make waves or dig in their heels as a matter of course, it doesn’t feel natural at first.  Advocacy is something done publicly.  It is played out in a setting that is very different from many other things we do.  You do it in front of an audience, sometimes big, sometimes small.  While some nod their heads along with the points you make, others assume a “show me” stance.   When you get them to nod their heads too, even a little, you feel pretty fine.

You learn that advocacy does not have to be adversarial.  It is sometimes, but many times it’s not.  Lots of times it’s about being articulate, passionate, persistent and even patient.  It’s also about being prepared and being stubborn.  It’s about looking for options and sometimes creating them.

Without advocacy, people assume we are okay with the status quo.  Without advocacy they don’t hear us or overlook our perspective.  Without advocacy, we cannot make a difference for our family and for other families.

For many families, figuring out how to go about advocating is like playing a Jeopardy game.  You know the answer you want and you try to figure out the right questions to get there.  Advocacy is a skill, or set of skills, just like playing Jeopardy.  If you hone those skills, you might get the jackpot instead of the smaller prizes.  But even if you are a terrific player, there are still heartbreaking consequences if you make a misstep.  You have to trust in your skills when you cannot trust in anything else.  Unlike Jeopardy, there are days when you do everything right and you simply don’t win.

Advocacy is also about picking yourself up and going to the next meeting, the next discussion and bringing your A game one more time.

When I first began talking to other parents about my son and how we worked to get the services and treatment he needed, some would say, “I didn’t know you could say that” and a light bulb would go on.  Others would share their own stories.  Some would ask me to help.  When I did, I learned that if you help one family, you only help one family.  The barriers remain and the rocky stretches, treacherous streams and bad weather are there for the next person.

Individual advocacy for my family and other families was important, even crucial. But nothing changed for the families coming along after us – they were likely to hit the same snags and experience the same hazards.  Systems advocacy – working to change policies, laws or practice – changes things for many more families. The first time I sat at a policy table, I realized that here was the place to bring all those family stories, the skills I had learned and the hard won expertise.  Here too, you sometimes fight to have your perspective heard but when it is, it doesn’t echo anyone else in the room.  It’s why you are there.

My son watched me advocate over the years first for him, later for families like our own.  One day, he said, “I want to listen and watch.  I think I can advocate, too.”  Great, I told him.  And he has.  It’s a big undertaking to become a self advocate, with emotional fist pumping moments and moments of deep disappointment.  He understands that, too.  One day, when we were talking I told him, “Advocacy is our family business, you know.  Some families have stores or restaurants or trades where the children learn a lot about the business from an early age.  Just like you’ve learned about advocacy.”  He grinned and nodded.  “I’m okay with that,” he said.

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3 thoughts on “Without advocacy we cannot change a damn thing

  1. As some know I am an Educational Advocate. I try to be respectful at all meetings because if I get Johnny what he needs if I am not, the next time I am in that district I may not get what Susie needs. I utilize the regulations and agree to disagree. I also do not go from A to B to C. I may be at Z and revert to H so that no one really knows where I am going.
    Once I asked to see a students grades and never brought it to the schools attention that they were misquoting his grades. I would later use it at Mediation. I love what I do. But that said it can be very draining. I happen to be an advocate before I adopted my son. I would offer Sped Trainings and he would come. I thought he was just doing whatever he was playing with at the time. I was wrong he was listening to everything I said.
    I think my proudest moment was the day I got a call from the Out of District Liason where we lived.
    She asked me to stop him from advising other students that the school was doing things against their civil rights. I inquired if he was misrepresenting the regulations? She said no he was spot on. I said so why would I tell him to stop? She stumbled and said I don’t know. He came home from school and I congratulated him. Now he tries his best to advocate against the stigma of Mental Illness. As parents we need to teach our kids how to not only advocate for themselves but classmates.

  2. I have 4 adopted children all with mental health issues that I have been advocating for for many years. We have many services DCF, DDS, DMH, special education but all these services are sadly poor in my area. I constantly have to fight every year to get them what they need. I am so disappointed in the mental health services in Massachusetts.

  3. Lisa; Thank you for this blog. Massachusetts is so lucky to have you as a strong advocate for kids and families. Sometimes when I am talking to families that are discouraged with the system I give them a bit of a history lesson. Not that long ago private insurers paid for $500.00 a year of outpatient mental health treatment. The only three treatment options were outpatient counseling for 50 minutes a week with or without medication, or 24/7 inpatient treatment. Also, mother were blamed for everything including incest and autism (remember the schizophrenogenic mother?). Advocacy does work although change can be slow. Education is key. Keep up the good work Lisa.

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