Guest Post: Rachel Cohen-Rottenberg:When Preserving Life is Considered a Nuisance: What's Wrong with This Picture?

    It's an honor to be able to host this incisive, evocative and inspiring post by Rachel Cohen-Rottenberg.  Rachel publishes her blog  www.journeyswithautism.com  and is the author of an informative and insightful memoir, The Uncharted Path: My Journey with Late-Diagnosed Autism, which is available through amazon.com.  Rachel is also a very strong disability rights advocate.

Rachel Cohen-Rottenberg

I recently ran across a story that, to me, encapsulated all that is wrong in American society, especially regarding culturally entrenched attitudes toward disabled people.

A six-year-old girl in Edgewater, Florida has a life-threatening peanut allergy. It is so severe that she can have a fatal reaction simply by sitting at a table with someone who has a peanut butter sandwich, or being touched by someone who has eaten any food containing peanuts. Her severe allergy and its consequences have been well-documented by her doctor.

Her condition is considered a disability under the Americans with Disabilities Act and, as such, administrators at the public school where she attends the first grade have put a number of rules in place to protect her health --- and her life. Her fellow students are required to wash their hands and rinse out their mouths three times a day, a process that takes about ten minutes each time. The children cannot bring in products containing peanuts for lunch or snacks, nor can they bring in outside food to holiday parties. The desks in her classroom are wiped down with disinfectant once a day, and during spring break, peanut-sniffing dogs were brought in to make sure and that the environment was a safe one.

These accommodations allow the child to receive a public school education with her peers in an inclusive environment.

Apparently, dozens of parents are up in arms about her accommodations and have staged a public protest outside the child's school. They want the child removed and home-schooled. Yes, that's right: They want a disabled child segregated --- out of sight, out of mind --- because of her disability.

Excluding the child would be bad enough, but the reasons given enter the realm of  absurdity, and betray the levels of entitlement, selfishness, and pettiness that have become hallmarks of American society. Here's a rundown:

1) The accommodations are taking too much time out of the school day –- 30 minutes total, per day.

On parent, Carrie Starkey, summed up the feeling of the protesters by saying, "That's my child's education. Thirty minutes could be a whole subject."

Here we find the familiar refrain that students who need accommodations are somehow stealing from the educations of their typically able-bodied peers. Of course, to take this claim seriously, I would need to feel convinced that, each and every day, all the other little children were sitting quietly in class, attending to their lessons, behaving like little ladies and gentlemen, and doing absolutely nothing to disrupt the learning experience.

Not likely. Enter any public school in America, and you will see able-bodied children disrupting class on a regular basis.

If the parents are really so concerned about their children's educations, wouldn't the ethical (and adult) approach be to teach their own children not to be disruptive in class? That's what my parents taught me, back in the long ago and far away. It's a lesson that has been lost to much of the current generation (and yes, I know how old I sound when I say that).

2) The other children are being inconvenienced.

Asking the children to wash their hands and rinse out their mouths three times a day is seen as a grossly unfair nuisance. Said the same Carrie Starkey: "I don't think my child should have to rinse her mouth out three times a day. Nine times out of 10, peanut butter is not coming out of her mouth.”

And that tenth time? The child's classmate could die. But hey, the odds are against it, so why should anyone have to do anything out of the ordinary?

The lesson being taught here is very clear: The children simply shouldn't have to do anything difficult, or change their lives in any way, to support the life of someone with a serious medical condition. If it's too hard, or too inconvenient, or too out of the ordinary, forget about it.

And thus, we see the creation of yet another generation of people who just can't be bothered to help people with disabilities, or their families.

3) The children are losing out on “normal” experiences, such as holiday parties with outside food.

Apparently, the fact that the parents can't bake or buy cookies for their children to bring to school is sufficient reason to throw a six-year-old girl out out of the classroom and segregate her at home. There is almost a sense of unreality here about the way in which the disabled child's right to be part of her community has become less important than whether the other children get to bring in Oreos.

The parents' sense of entitlement is beyond petty. It's absolutely mind-boggling.

4) The children are being “stripped of their rights.”

This claim is perhaps the most absurd. What rights are they losing? The right to forge blindly on in their accustomed way, despite its potentially fatal impact on their classmate? As far as I'm concerned, if they think that's their right, they ought to be disabused of that notion by someone with at least one foot in reality.

5) The restrictions are too extreme, and everyone should discuss the matter to arrive at some sort of “compromise.”

Once again, here is a familiar trope: Disabled people really don't need all those accommodations. We're all just seeking attention and demanding more than our fair share. Or something.

I have difficulty understanding how anyone can assume that the disabled child's parents are being extreme here. We're not talking about the child breaking out in hives. We're talking about her going into respiratory failure and dying. Exactly where is there room for compromise in a situation like this one?

6) The parents of the non-disabled children know best.

One parent, who has never had to deal with a moment of disability in his child's life, was quoted as saying that he would never request such accommodations for his child. "If I had a daughter who had a problem, I would not ask everyone else to change their lives to fit my life," said Burr.

Oh, yes, you would, Mr. Burr. Oh, yes, you would. And you'd come up against exactly the kind of resistance you're creating.

What disturbs me most, though, is what's missing from the entire conversation: the understanding that it's an honor and a privilege to assist a fellow human being in creating a safe, welcoming, loving environment. Nowhere, in any of the articles I have read, has anyone talked about the fact that the disabled child has given all of her classmates an opportunity to act out of their highest ethical selves. As a society, we've clearly forgotten that it is more blessed to give than to receive.