You are entering the Independence Zone!

Hello, readers,

You may have read this title and thought, “I thought the expression was, ‘pleading the Fifth.'” Yes, it is, and that’s something else we’ll talk about today, but I changed things around a bit.

When I was in ninth grade, the required history course for freshmen was Economic, Legal, and Political Systems (ELPS). Now they just call it civics. Anyway, no matter what you call it, ELPS was your basic course on government, voting, the economy, and the Constitution. As part of this course, we had to learn all ten amendments in the Bill of Rights. My teacher explained Amendment Four as the right to privacy, because it’s the one that discusses a citizen’s right not to have to quarter soldiers in his or her home, or have his or her property searched and seized without a warrant. My teacher’s catchy memory phrase for this was, “Amendment four, close your door.”

Well, I got A’s in ELPS, and I never thought too much about the privacy amendment after that (except to complain about the NSA, but then, everybody did that). Recently, though, as I was thinking up new post ideas, the idea of right to privacy came back to me, and I asked myself: do people with disabilities have the same rights to privacy as people without them? Understand, the question is not, should they. We know the answer to that. The question is whether they do in the first place, and if not, what we should do about it.

However, a lot of people in our world today act as if the question is a “should” proposition, and as if the answer is “no.” Think about the way that some people talk about PWDs. They say things like, “They don’t understand,” or, “They can’t take care of themselves,” or, “He/she can’t be expected to do X,” at least not successfully. The implication there is that, because PWDs allegedly can’t care for themselves or otherwise function, someone else needs to do it for them. Because someone else is in the picture, the PWD’s right to privacy may as well not exist.

A lot of people might deny this, especially loved ones of people with disabilities. They might say, “But Sam has his own room, and I don’t come in without permission.” Okay, I’ll give you some credit there, but “privacy” doesn’t only equal the right to close a door. Privacy also entails the right to make your own decisions, take care of matters that concern you, and share or not share information as you see fit. Now, I get it–if Sam is a kid, then of course Mom and Dad are going to be filled in on what his doctor or therapists have to say. And if Sam is absolutely unable to handle money, then he’s going to need budgeting help. But a lot of the time, people who work with the disability community take this too far.

I mean, for crying out loud. For some PWDs, even a trip to the bathroom isn’t private. Now, that might be partially because the person can’t take him or herself to the bathroom, and that’s okay. But does someone else really need to analyze what goes on in there? I’ll borrow from Sharon Draper’s Out of My Mind. The heroine, Melody, cannot take herself to the bathroom, so her friend, neighbor, and caregiver Ms. V does that. But then she reports back to Melody’s parents “whether I had a good poop. Why is that important?” Think about it, folks. With or without a disability, do you really want someone other than a doctor analyzing your bowel movements? Heck, I don’t even want my doctor doing it, so if he ever asks, he better have a darn good reason. Plus, this kind of thing just feeds into the stereotype that people with disabilities are so dumb they don’t even know when they need to poop and pee.

The privacy issues don’t have to be that personal, of course. Sometimes, it’s a matter of an adult living with family and still being treated like a child. For example, yes, maybe that adult needs budgeting help. But is it fair for Mom, Dad, or somebody else to then come to them one day and say, “Why are you spending money on that?” Is it fair for a PWD to have his or her possessions snooped through and taken without permission, as sometimes happens in home environments or group settings? Is it fair for a PWD, even one who can’t feed him or herself, to never get to choose what he or she eats, or to have those choices judged? Do you think PWDs get tired of going to therapy, walking and talking and moving when they’re told to (rather like trained seals) and then having doctors and therapists discuss what progress they are or are not making? Sheesh–people, dolphins have more privacy than this! Chimps in the zoo have more privacy than this, and at least they get free bananas, with no one questioning whether they have a banana addiction!

In the worst cases, people with disabilities or illnesses can even become public property. Don’t believe me? Look at some of the state-run institutions in this country. I’m willing to bet, dollars to doughnuts, that the people in those institutions don’t have much contact with loved ones, and that if they or those loved ones do or say anything to go against “the state,” they are penalized. In a more poignant, closer-to-home example: remember Justina Pellietier of Connecticut? Her parents have been fighting to get her back from the Massachusetts DCFS for months. Why? Because Justina has mitochondrial disease. Yes, it’s a rare disease, yet that does not excuse what Boston Children’s Hospital did in response, which was to accuse the Pellitiers of abuse and remand Justina into their custody, then state custody. Those people lack compassion, an understanding of basic freedoms, an understanding of real abuse and neglect, respect for parental rights, and respect for personhood. Therefore, right now, Justina is public property. I shudder to think how many people with other diseases or disabilities are in the same situation.

Worse than all this, often, PWDs can’t choose when and when not to share information. For example, maybe a PWD chooses to join an online dating service. He or she doesn’t want to share that with others yet, which is fine. That’s his or her business. But what happens when others start nagging, or even forcing, that person to share? Or conversely, what if there’s something that a person with a disability wants or needs to talk about, but is ordered not to? I wonder how many times Justina Pellitier has effectively been told to shut up. Where the heck did the Fifth Amendment go?

I’ll leave you with one final Constitutional thought. There’re two other amendments in there, numbers thirteen and fourteen. The first of these abolished slavery; the second made former slaves citizens. The fifteenth even gave them the right to vote. In other words, because of these amendments, we can’t own people and treat them as if they have no voices or rights anymore. At least, that’s the case for black people. We’d argue, no, that’s the case for everybody.

So…when you look at a person with a disability, do you see a person, or a piece of property?

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