Price Check on the Autistic, Please

“You know, ” I told mom over dinner, “Any kid I have is possibly going to be autistic.”

Mom leaned forward, smiled conspiratorially, and replied: “Do me a favor, Ren. Adopt.”

I was so stunned by the casual way she said this, as though it were something I should have internalized by now, that I didn’t point out that she had adopted, and still got an autistic kid. Not long after that I was told that it wouldn’t be the worst thing if I never had kids.  I’m pretty sure my older brother was never told that, though his story on that front is equally fucked up. It’s just not mine to tell, even with a pseudonym.

More recently, a friend of Morgan’s who is known to run his mouth without his brain heard something about autism and stated “I don’t understand why we keep broken people around.” Morgan stared at him for a minute while I glared at Morgan.

“You do realize Ren is autistic,” Morgan said. Some degree of backpedaling later, I was no longer fitting under that heading. Still, his opinions of things ranging from autism to transgender issues are still cause for me to want to shove a beer in his mouth so he doesn’t start talking.

Meanwhile, one of the tried-and-true methods of scaring the general population is to run statistics on how much an autistic (or any number of varying differences) child costs over time.

I imagine I’m exceptionally costly, as my adoption was not a cheap affair. The lawyer involved was later disbarred for attempting to buy children – 60 Minutes ran a story on it, I believe. While the original story I heard about how the money changed hands was a bit (um, very) different, I’ll be generous and go with the newer version, which is that my parents thought they were covering medical bills. That isn’t where the money went.

Factor in the psychiatric meds, hospitalizations, special ed, speech therapy, and college I dropped out of, the money that has been sent monthly until my SSD claim goes through, and I’m pretty expensive. The money spent has been “wasted” on a broken child when it could have put another kid through prep school (instead of attempting suicide and subsequently kicked out) and then an Ivy League college. I should assume, therefore, that I am a cautionary tale. Something to avoid, and someone who should not be reproducing lest the world have another burden to bear.

The fact that every person on earth is one car crash or major medical emergency away from being completely dependent on others seems to be totally lost on people. Even eugenics can’t solve the problem of disabled people in this world unless we round up accident victims and shoot them, which I’m pretty sure is frowned on by the same people who think eugenics is a fantastic idea.

The notion that the perfectly-abled child can still grow up to be a selfish douche who has nothing positive to offer the world is also lost. Every child is a roll of the dice, even if the genetics are loaded, and if you brought one to term, you get what you get. Some lives are harder than others; some are more painful than others. I wish that weren’t the case, but that is how life is.

So when I see things like this, from ASAN, I just find myself asking: Why? Why does this need to be explained to anyone?

. . . People with disabilities see these lawsuits as involving distinct issues unrelated to abortion, namely the harm to society when courts make decisions about the value of the lives of individuals with disabilities who have already been born. We are disappointed that an organization committed to and with a long history of protecting civil liberties and human rights, particularly the rights of traditionally marginalized or underrepresented communities, would support a policy that dehumanizes people with disabilities and devalues their lives.

Wrongful birth and wrongful life lawsuits have as their basis the assumption that life with a disability is not worth living, which goes against the principles of the disability rights movement and the Americans with Disabilities Act. These actions require parents to publicly reject their child because of a disability. Only parents who convince the court that their child should never have been born are eligible to win a wrongful birth or wrongful life lawsuit. Similarly, because not every disability will be considered significant enough to win a wrongful birth or life lawsuit, courts are required to make decisions about which types of disabilities are “so bad” that parents should be compensated for having the child.

The courts would probably never compensate for someone like me being born. I recognize this. As with many legal issues surrounding autism, I’m “NotLikeThatChild” (more frequently referred to as the “NotLikeMyChild” tag that many autistic advocates hear from parents who object to pretty much everything we say).

I can also recognize the gray areas;  I grew up in a family where Tay-Sachs is something to worry about. I can’t say that I would necessarily fault family for having an abortion if that test came back positive. I can’t say that I would fault them for wishing their child were never born, not because it hurts them as parents, but because the baby is suffering every day of its life. I think they absolutely should have compensation if the test was done incorrectly, or they were counseled inappropriately. I do not think, however, that a parent should have to say, out loud or in print, heart already broken, “I did not abort you, but I wish I had.” Even if the child will never have the capacity to understand it, or on some level there may be truth. Amazingly, human emotions are complicated.

Obviously, suing over malpractice for genetic testing implies that an abortion may have taken place, but I think there is a very different message in, “Well, he’s here now and we need help,” and, “Give me money because my child should never have been born.” Why is the change in language even necessary? I also wonder about the inequality to the parents who refuse to file a suit with that kind of language, even if they would gain desperately needed compensation or assistance from doing so.

Where do we draw the line? At diseases like Tay-Sachs? Or somewhere much closer to home? As we get better at testing for various genetic conditions, will the bar keep rising? What happens to those children who have “lesser” disabilities, or have the capacity to understand the lawsuit, but whose parents are trying to work the system either for personal gain or because other avenues have been closed to them? How do those children feel about themselves? Also, not everyone can afford genetic testing. What about them? Who exactly are we helping with this?

And what message does all of this send to the kinds of people who are already thinking that it might be okay to just kill us and start over fresh, a sort of exceptionally late-term, post-birth abortion like Saiqa Akhter seemed to think?

Malpractice is malpractice. A child is a human being. Please keep these concepts separate.

NOTE: I don’t want this turning into an argument about abortion. I am rabidly pro-choice, regardless of how gross the decisions of others may be to me. That said, I have the birth control implant in my arm to diminish the odds I’ll ever have to make a decision like that. Morgan plans to get a vasectomy. I love my hypothetical kid enough to not have one until I’m ready, which is not going to be for a long time – if ever.

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