This week, the National Hemophilia Foundation is having their annual meeting in Dallas Texas. This wonderful meeting is America’s premier bleeding disorder yearly reunion. And it got me thinking about two themes that I have been told nearly all my life as a person living with hemophilia. Those two things are, one, that people with hemophilia are not handicapped or disabled and that, two, people with hemophilia are an inspiration to others. Both are, mostly, false. I say mostly because, the advancements in hemophilia have left the younger generation free from major joint damage. But besides that, many of us are disabled and handicap and all of us are no one to look up to.
Looking at the first distinction, the handicapped or disabled label, people are quick to say that we are not. While we can all agree that being disabled or handicapped is not a goal or something anyone should aspire to, for those of us that do have mobility issues, we should not feel shamed or feel less than the next person just because we have mobility issues.
It took me a long time to realize that and I still fall into the trap every once in a while. It took me forever to get a handicap license plate. Why? Because I was too proud. Because being disabled was “bad.” Well, I am handicapped. I am disabled. I am a cripple. And you know what? There’s absolutely nothing wrong with it. It just is what it is.
On the other side, the bleeding disorder community also promotes a culture of victim hood, as if our pains and troubles make us someone to look up to. It’s a funny balance to hear too since, while people are trying to pass the first belief (you’re not handicapped / disabled) they also try to juggle the second which is, that we’re some type of heroes for what we are dealing with. Which of course, according to view one, is nothing.
These two beliefs have been propagated to our community from a place of well meaning. It makes people disabled with hemophilia deny their disability (making one not feel bad) while making us out as role models (so we can feel good about ourselves). While they mean well they, to me, do more harm then good.
It makes a person with hemophilia feel proud of having a bleeding disorder and there is no greater wrong on earth than pride.
This “you’re not disabled / you’re a hero” is actually creating people who are disabled and anti-heroes ironically enough by living a sedentary life without any goals. After all, why should anyone aspire to anything if they’re already perfect? Not only is nothing wrong with you, you’re also someone people should look up to.
I hear people trying to balance these two views with a myriad of excuses. It’s a delicate balancing act of bull feces that has been ingrained into our heads.
So what are we then?
For some they are disabled. For others, they are not. Regardless if you are or aren’t, that doesn’t make you bad. It just makes you either disabled or not. No biggie.
So then are we heroes? Heck to the no. First responders like police, fire, and paramedics, those people are heroes. People in the military, those people are heroes. We’re just people who walk funny and have owies.
I guess what I’m trying to say is, at the end, we are all the same. People who are physically more healthy than me can be more unhealthy in their emotional, financial, spiritual, or emotional health than me. The old saying that we all have our cross to bear is true. Just because someone might be at a disadvantage to the eyes, doesn’t mean that that person’s life isn’t easier than the so called “healthy one.”
When people mope and complain about their physical ills, they’re more times than not just looking for sympathy. Since everyone is battling their own demons of equal weight this person does get the empathy they want all though not in the form they want it. It comes off as pathetic.
So to all my blood brothers and sisters out there reading this, quit feeling bad for yourself and, more importantly, stop feeling proud of yourself. You haven’t done anything yet. And that’s a good thing.
That means that we still have a lot more to do with our lives.
That means there is so much more to life than just having hemophilia.
That means that we accept that we have our setback, sure, but so does everyone else. And that setback is nothing to be ashamed of.
That means that maybe one day we will be someone that people look up to through our own work, not to what just happened to happen to us.
Tony Hernandez 