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The Ripple Effect

  • Posted on December 6, 2013 at 10:00 AM

The Affordable Care Act. When the law was passed, my family was safe and secure in a state-run program that offered families a way to ease off of medical assistance by providing an opportunity to purchase subsidized insurance when they no longer qualified for fully-funded insurance. I’m not entirely sure how this program really worked, because this month is the first time I made enough to be eligible for the transition and the Affordable Care Act killed the program. Now, my choice is Obamacare or bust.

When President Obama first started pushing this legislation, I wasn’t exactly supportive. On the one hand, we really do have a problem in this country, so there was a part of me that really wanted it to work. On the other hand, this legislation doesn’t do anything to fix the problem, because, as the system stands, healthcare cannot be “affordable” for providers and insurers and the people. Somebody has to lose out on that deal. Seeing as the major supporters of the legislation included providers and insurers, I suspected that the people would be the losers, no matter what the President and his supporters claimed.

When initial estimates for Wisconsin residents were released, all the evidence pointed to the people being the big losers. Recently debated figures indicate a rate increase of 10-185% due to the legislation that makes health insurance “affordable.” Since I cannot afford health insurance independently, my only hope of providing my husband and me with adequate coverage is to hope and pray for adequate subsidies (my children are still covered through Wisconsin’s disability-related insurance program). The only way to access those subsidies is to go through the program run by the federal government.

This is all the more complicated by the very unsuccessful roll-out of the new website. When I discovered that I would be forced to use President Obama’s hallmark legislation to provide my husband and me with insurance, I was also taking a class about the crossroads of technology and public administration. Let’s just say that the disaster that is seems so much worse when you’re actually informed and leave it at that. Okay, I’ll throw this in too: After discovering how important online security really is, I really have no interest in loading up confidential financial information on a site that hasn’t passed its security tests because those tests were deemed too time-consuming under such a tight deadline.

The problem is that I don’t have any good choices. I can either go without insurance, which means my husband will go without prescription medication, or I can let the federal government take even greater control over my life. Either I pay a penalty for having no insurance or I pay more than I can afford for insurance that I cannot afford to use effectively. The only other option is to give up the freedom of self-employment in favor of a job that will provide insurance I can actually afford, if there are any employers who can still afford to provide insurance to their workers after this whole mess shakes out.

Sexual Tension

  • Posted on August 19, 2013 at 10:00 AM

It’s perfectly natural for us to want to protect our children from sexual misconduct—whether our children are kids or adults. We don’t want our children to be victims of someone else’s sexual misconduct, and we certainly don’t want our children to be perpetrators of sexual misconduct.

When our children have developmental delays, it can be easy to see our children as perpetual kids. And kids, we’d like to think, aren’t sexual beings. Therefore, in our minds, our children aren’t sexual beings.

We like to think this because it’s easier than dealing with uncomfortable realities, like our children’s sexuality.

After all, sexuality is difficult enough to deal with when you’re a typically-developing adult. And the sexuality of our children is difficult enough to deal with when you’re the parent of a typically-developing teenager. Add in an individual with developmental delays and a continued fascination with child-like interests, and it can be very difficult to even acknowledge our children are also sexual beings, let alone talk to them about it.

But this willful ignorance comes at a cost.

Most people with developmental disabilities, like most people without developmental disabilities, express their sexuality in more or less acceptable ways, all things being equal. A few people with developmental disabilities, like the few people without developmental disabilities, engage in sexual deviance that is predatory in nature. Contrary to recent hype, neither quality has anything at all to do with whether or not someone is developmentally delayed.

But people with developmental delays are at a disadvantage, because all things aren’t equal. Society—including many of the people who exert control over the lives of people with developmental disabilities—have actively repressed their sexuality for decades. And we’re still doing it!

My mom used to work at a group home for people with developmental disabilities. They were housed in homes called CBRFs, which was basically a bridge between “normal” living and institutionalization. Some of the people she came to know had been forcibly sterilized. Others engaged in uncontrolled masturbation.

One of the group homes she didn’t work at specialized in housing sexual predators. These were people with uncontrollable sexual impulses who were “allowed” to prey on each other, because at least then they weren’t preying on those who didn’t share their compulsions.

So, the question is this: Are these people natural, normal predators? Are they so profoundly broken that they couldn’t possibly control their sexual impulses? Or is our denial of their innate sexuality part of the problem?

Sexual mores are learned. They are taught by society and the people in society. They change over time. Once upon a time, having an affair with a married man would make you a social outcast. Now, casual sex is tolerated, even encouraged. At least, for typically-developing individuals.

Granted, our sexual history is more complex than that, but when you compare sexual practices across cultures and over time it becomes apparent that sexual mores are learned. And this means that if we want people with developmental disabilities to know them, then we have to teach them. If we want people with developmental disabilities to abide by them, then we have to acknowledge that they do have sexual impulses. We have to give them safe, responsible ways to express their sexuality—which may or may not include abstinence—based on shared mores. In short, we have to educate them and then give them opportunities to choose for themselves, which is the same thing we should do for everyone else!

Burying our heads in the proverbial sand because we find it discomfiting is not a solution. It simply creates more problems and denies the people we love and care about one of their basic human rights—to be masters of their own bodies and to make informed choices about their own sexuality.