Wednesday, October 17, 2012

Not a hero

My husband and I used to alternately groan and laugh hysterically at a children's television show called "Higgleytown Heroes," in which roly poly cartoon versions of not only police and firefighters, but librarians, shop owners, dog catchers, sanitation workers and many other denizens of the eponymous town were adulated with cheers of "hero" simply for doing their job. Of course, certain professions like the police and firefighters regularly go above the call of duty and risk their lives in the service of others. But finding a lost dog or ensuring a patron can find reading material do not fall into that category. And yet, the show with its triumphalist music and eager scripts, persistently equated the life and death struggles of the archetypal hero with the mundanity of daily life.

Robert, however, loved the program.

And, maybe, from a child's perspective, the simple act of adults doing their jobs and doing them competently, or even well, could be awe-inspiring. I haven't been a child for a long time. What do I know?

Like many parents of children with disabilities, I've had my share of pats on the back from total strangers who observe me doing my job as a parent with my child under difficult circumstances. These accolades often take the form of calling me a "hero" or stating some sort of effusive admiration. I won't lie to you: these incidents are often affirming and I appreciate it from strangers. It's like getting anonymous flowers.

But does it make me a hero? I don't think so. I'm just doing what has to be done so my family members and I can move on with our day and our activities. What we're all trying to accomplish, aside from the complications of disability, is what's most important to all of us: seeing a museum, getting the groceries, going to school and to work, progressing with our careers and our studies. And that includes Robert and his goals. So it's frustrating to have congratulations for doing the dirty work or enduring the unfairness with a smile, but not having the regular and consistent supports that help all of us accomplish something outside of, or in spite of, disability.

And that includes Robert and his need to go to school, communicate, and enjoy the company of his friends--all aside from his disabilities. The problem is, these things cost money or require societal investments, which are certainly not dispersed equitably.

My husband and I talked recently about the wild misperceptions our contemporaries, including some family, have of the supports available to children with disabilities and their families. We've had the impression that people confuse the Medicaid waiver system for children with disabilities with the apparently extensive supports available under Medicare to the elderly, especially those facing the need for facilities care and home supports.

Medicaid ain't like that. The Medicaid waiver system in Maryland, and in many states, is a hot mess. Like many states, Maryland has hodgepodge statutory guidelines that allow waivers for various disease categories, but have no statutory trigger for determining the global impact of the child's disabilities on their health, education and general welfare. That translates as, if your child has one of a few more common childhood disabilities, you get a waiver. If your child has no diagnosis or lacks the RIGHT diagnosis, your child only gets a waiver if his or her life is in danger. Which is why Robert now has a waiver. Finally. Because he's now at risk for starving to death because we can't get enough calories in him during the day.

As you can imagine, this rabbit's warren of rules and programs creates unequal access to medical and therapeutic services, as well as lays a faulty foundation for educational success, among a state's most vulnerable children. Let alone the tremendous financial burden shouldered by the families without access to a waiver, but with a child like mine with catastrophic impairments. The skyrocketing rates of health insurance and equally stratospheric increases in the costs of non-routine medical care ensure that no family, no matter how well off, can afford the lifetime tab for a child with severe disabilities. As we've recently discovered, it doesn't matter how good your insurance plan is. Or how much you sacrifice to find an insurance plan that might be.

Which is how my husband and I ended up complaining bitterly about Medicare. I will admit, right up front, that we may be, ourselves, misinformed about how much support for home and facilities care is available for aging and sick seniors. We've watched our own family members make the difficult decision to choose facilities care for an elderly relative, rather than provide care at home. I don't know that we know all about it.

But I do know that the states regard a parent's care for a child as, in part, a legal responsibility, whereas the reverse is not true. So, in the end, I'm not hero--the buck will always stop, not on Truman's desk, but with the law.

Yet maybe this is why strangers and relatives alike want to tell me I'm a hero: what ultimately binds any of us to the intensive care of a child with disabilities or an aging parent is a sense of moral and ethical obligation that sets aside issues of cost and personal freedom.

Still, I reject the label, and not out of modesty or in the service of completing the deferential parental trope that says my own child's struggles are far more heroic than my own. I'm just tired of living with cognitive dissonance--having people I know well and don't know well tell me I'm a hero while at the same time, it seems, everyone and every social structure often takes a step backward when it comes to ensuring that my son not only stays alive and thrives, but can do so without demolishing the family of which he is a part.

We've been watching a lot of Star Trek in my house lately. And I need to look for a different way to approach work. So I'm putting together a CV that at times seems sturdy, at other times built with both new and ancient timbers, a relic of what I've gained and lost from this long struggle not with Robert, but his illness, and the theme music of an old TV program that approximates the hero's quest to boldly go where no one has gone before feels like it's mocking me. Whatever I've done with my life may not be enough to get me where I need to go.

So please don't call me a hero and walk away feeling you've done your good deed for the day. Think about what you can do to take a step toward leveling the playing field for children and adults with disabilities and the families who care for them, whether it's voting for something that may be in their best interests (if not your own), contributing money or time, correcting someone else when they rant about freeloaders and the entitlement system, recognizing the constraints that parents of disabled children face in the workforce, or stepping in to run an errand or sit with a child for an hour or two. I'm not a hero, but you could be one.


Alysia said...

I completely understand this. The "hero" thing goes with "I don't know how you do it.". We just do it. But we can all make a difference by changing laws and policies that help us. Great post.

proudmamaofthree said...

OMG. The Higglytown heroes reference kills me. What is it? The catchy tunes? The rollie pollie people? My daughter (diagnosed at 23 months with aggressive brain cancer, then in treatment and living with serious complications until she died at 4) liked them, too.

Absolutely. The "you're a hero" comment is a cop out--trying to say that who we are/what we do is unattainable by most. Nope,we just love our kids and do what we have to do, one minute, hour, day at a time. It's hard. It's not the path we would have chosen. But, we will continue to do all that we can to help our children. Don't cop out--help.