Well, It’s Not Sexy

There are different types of advocacy work in the military world.  We have those are advocating for our wounded warriors and their families.  We have advocates calling for better awareness with PTSD diagnosis, treatment, and suicide prevention.  There are advocates for the military spouse that fight for education to employment.  We even have the advocates that have been effective with policy change which also has a variety of subject matters.  Some of these subject matters are really sexy, like employment, education, PTSD, but some aren’t, like pediatric healthcare and special needs.

We, who choose the path of special needs, pediatric healthcare, or Exceptional Family Member Program (EFMP), have chosen the least sexy advocacy path of them all.  WOOHOO FOR US!!!!

What Do You Mean It’s Not Sexy?

I can tell you from firsthand experience that no one wants to hear how the military treatment facility did not provide adequate medical care to my child, or how we’re so bogged down with bureaucracy that it’s hard to navigate the system without losing your mind.  We are constantly reminded that we have “free” healthcare and should be thankful.  Oh and yelling at the doctors and medical staff; not sexy.  Well at least not for me since I get a little frothy at the mouth.

No one wants to know how that family who happens to have a child or children in the EFM Program is actually doing.  They aren’t doing well some days.  The family is facing a variety of issues to the severity of the child’s diagnosis, their overall health, getting needed therapies such as OT, PT, or ABA, to fighting for the child’s education, or fighting with insurance companies.

I only saw the tip of the iceberg for so long, until Ian.  I’m a special needs adult, so I understand how important it is to advocate for yourself.  And while I may have fought for my educational accommodations, I never had to fight with an insurance company for any healthcare coverage.  I never had to argue for therapies that were vital to my well-being.

I can’t believe what EFMP families go through.  I can’t believe how exhausting all of this fighting is.  I can’t believe how overwhelming it all is.

Never in my life have I cried such big, ugly tears like I have when my insurance denied coverage to a basic healthcare need of my son.  We are not a sexy group of people…or are we?

Today I read a story about Miss Iowa who was born missing a limb; part of her arm actually.   Her platform is advocating for special needs children and adults.   When a girl with autism or one that overcame cancer goes onto the Miss America Pageant, then everything changes.  All I can say is, “who cares if disability advocacy is sexy or not?”  Because it really doesn’t matter if we’re the cause de jour; we’re a group of people who will overcome obstacles the likes you’ve never seen nor encountered.

Now, that’s a little sexy.

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