One of my old friends posted on Facebook about the new insurance law of the land – his child has a “pre-existing condition.”
A response from one of his FB acquaintances said:
“Why will your situation change? You have insurance and your procedures are covered.”
And this, American public, is what’s wrong with this country.
We cannot just care about the people we personal know.
Just because you don’t know someone doesn’t mean they don’t exist.
Just because you don’t know someone doesn’t mean they don’t need your help.
Just because you don’t know someone doesn’t mean they don’t deserve compassion and basic human dignity.
I am horrified that the Republicans and the conservatives have absolutely no empathy, sympathy, or compassion for anyone other than themselves.
They want to make basic health care unaffordable for the disabled, the elderly, and the victims of domestic violence.
They want women who have babies punished by cutting off their insurance or making it unaffordable. (And to anyone who wants to respond by saying that women who can’t afford children shouldn’t have them needs to go down to an abortion clinic and pay for the abortion or pay for the prenatal, labor and delivery, and post-natal care, as well as paying up for the next 20 years for the kid’s life…)
They want to take care of themselves and their cronies, giving money to people who already have it while taking it away from those who do not have it.
Let me tell you this – you are not “safe.” No one can predict what will happen in their lives, where they will be in one year, five years, ten years.
But the thing is, even saying that, that is not the point.
**The point is that it shouldn’t have to happen to you for you to care about it.**
As anyone who knows me (or has read one or two blogs on here or any of my other writing) knows, my son is autistic. We have pretty much acknowledged that, while we aren’t stopping trying and while we wouldn’t give up, we know that he will probably wind up in an assisted living type circumstance where he will need help with his daily life. We’re lucky in that we have lots of insurance for when we’re gone, and we know how to apply to get him what he will need. In fact, we’re already on waiting lists because many of them are eight to twelve years long (no joke).
However, for those that aren’t in that position, the world is, simply put, fucked up. I prefer not to go all out on the cursing in my blog, but this is one time it deserves it. Lubbock, Texas, has a state-supported living center. In 2009, they were investigated. At the time, they were at 20% compliance. Wait, let me repeat that. Fucking 20% compliance. 20%. 20-fucking-percent.
In the past four years, though, they’ve made gains. To 23%. Wait, let’s go over that one again, too. In four years, they improved less than one percent a year.
The state home is meeting requirements in 37 out of 171 areas.
And that is – scarily enough – not the worst of it. Between January 2011 and August 2012, there were 202 allegations of physical abuse and 188 allegations of neglect. Now, to be fair, only 50 allegations of physical abuse were substantiated, and only 83 allegations of neglect were substantiated. But a lack of substantiation doesn’t mean it didn’t happen; it just means that it wasn’t proven. And with the way things work, how long did it take to see if these things were true? Long enough that it *couldn’t* be proven? And how many people couldn’t even make allegations because of their conditions?
And, because I want to keep being fair – there’s one more thing you should know. Remember the year and a half including 202 allegations of physical abuse and 188 allegations of neglect? Here’s the thing you should know about that. There are only 211 residents. What do these numbers tell us?
Now, again, I want to be fair – I do not have the 500+ page report that details all this, so I don’t know if multiple allegations came from a single individual. In fact, they probably did. But it’s still just beyond troubling that there are only 211 residents and 202 allegations of physical abuse. Those numbers just seem overwhelmingly out of whack with a world that cares about the people in it.
I know I often quote from Hair, and maybe because that’s because I’m a hippie at heart, but sometimes it’s just so appropriate to ask “how can people be so heartless? How can people be so cruel?” What is wrong that this is going on, and no one is fixing it. Yes, the state is stepping in now, and they are claiming that they will do evaluations every six months with plans for the state home to hit 100% compliance in four to five years. But what about those four to five years for the residents? They’re expected to keep suffering while the state slowly fixes a world that is abusive and neglectful?
No, I don’t know the solution here, but maybe we need to start looking for one. This isn’t the only state home, and I’m afraid that if I kept looking, I would find even worse numbers out there. But for us as the general public to act horrified when we hear about an individual child abused, why aren’t we outraged now? Why aren’t we getting the people involved removed and putting in a whole new and well-trained staff? Why don’t we care enough to speak up and step up?
So…the Special Olympics Bowling Tournament came and went – and I did get a call back on the Thursday before from the woman in question from the local group. She partially back-tracked and partially denied what she had said in the email.
She held firm to the idea that some athletes may be asked to stop bowling but clarified that this applied to those who were a danger to themselves or others, citing that in years past, there had been incidents of some athletes throwing bowling balls at each other. Fair enough. And she did specify that they’d still receive a participation ribbon; they’d just be removed from the actual bowling, which is not what it sounded like in the original email where it said that they would be asked to leave.
However, she also stated that students who were disruptive shouldn’t be there – that they “weren’t ready” for the tournament and would distract the other athletes. So while it would be okay that Simon would talk repetitively with his “tv talk” as well call it (echolalia), if he yelled, then he might be asked to stop playing. And she said that she never wrote anything about some kids not belonging there – and I didn’t have the email in front of me to quote it back to her because she had called me while I was out at lunch. And she never really made me feel good about her original comment about the looseness of the term “intolerable behavior.”
Still, the tournament itself went well for us. Simon brought home the gold for his lane, and he had a good time until the end when he had to wait. I’m sure he had some “intolerable behaviors” then, but no one talked to us about it or seemed to be paying any attention to it.
But…I managed to hear gossip while I was there. And I have no idea of its veracity, especially since it is gossip, but it concerned me nonetheless. I was told that the local Special Olympics rep was a great person but that she might have had a grudge against our coach due to some late paperwork and that someone (it wasn’t clear who, exactly) might have suggested that one of the older athletes who liked to hop and move around a lot was unwelcome at the tournament. Are the rumors true? I don’t know. But they are disturbing, and because of that, I do hope they are false because it would be very upsetting to think that personal vendettas and intolerance of disabilities was ruining an experience for kids who would really benefit from it.
Hopefully there will be no confusion or fighting next year. I’d hate to have to call a dozen numbers again, trying to look for fairness and equality at an event that is meant to be just that, fair and equitable.