There is a tendency, among people who do not live in Holland (i.e., who do not have a child with disabilities) to praise us Holland-dwellers. “I could never do what you do!” “You guys are simply amazing, the way you take care of him,” or “He’s lucky to have you.”
I’m not sure what to respond to these. (Well, to the last, I do say, “We’re lucky to have him,” because this is not something anyone says about my other kids.) Here’s what I am thinking, though, when people praise me. It’s not as if I had a choice, here. I’m doing the best I can with the hand I’ve been dealt, and so would you. What would you say if I didn’t take care of him? If I abandoned, or simply neglected him? Would you say, “Of course, that’s totally understandable!” I think not.
People talk as if taking care of my child were supererogatory, or heroic. Which implies that it is not obligatory to take care of him. If that were true, then to fail to care for him would be no wrong. Of course, this is not how they feel. They simply can’t imagine what it would be like to have a child with disabilities. They grossly overestimate how unhappy and burdened it would make them feel. I extrapolate here from my personal experience before and after having my child, many friends with kids with disabilities, and data on the disability paradox. The disability paradox describes our tendency to predict we will be far unhappier if we become disabled, while people who do become disabled actually don’t report being all that much unhappier.
Of course, however, people don’t really think that way. Of course they think we are obliged to care for our children. In fact, they think we have an extra obligation.
You can see this in the sad case of Eva Cameron and her daughter. Cameron has three children, the oldest of whom is 19 years old, and has a developmental age of 3. Cameron abandoned her developmentally disabled daughter in a bar in Tennessee (pictured). Allow me to say at the outset of this discussion that I do not think Cameron was morally justified in doing this.
Tennessee officials did not say, “Of course. We understand. Taking care of your daughter would be an amazing thing to do. We could never do it.” Instead, they cast about for crimes with which to charge her.
While her actions were “inexcusable,” an Algonquin mother will not face criminal charges for abandoning her 19-year-old disabled daughter at a Tennessee bar, according to the district attorney general in Campbell County, Tenn.
That was the conclusion of a grand jury that investigated whether Eva Cameron, 45, should be charged with willful neglect and exploitation of an impaired adult, according to a news release issued Monday by Lori Phillips-Jones, district attorney general.
“There is no disagreement that the actions of the mother, Eva Cameron, in this case were inexcusable,” the news release states. “However, Tennessee law has not anticipated such behavior and thus the Grand Jury was faced with conduct which was not necessarily indictable”…
The incident sparked outrage in Tennessee, prompting one state representative to work on potential legislation with local authorities to avoid similar scenarios, officials said.
Let us note here that the girl is 19. Let us note that at that age, most parents’ legal obligation to care for a child ends. Let us note, too, the degree of moral outrage at Cameron. Everyone agreed it was inexcusable for her to stop caring for her daughter. A parent who washed her hands of a typical 19-year-old would be frowned upon in most cases, but no one would be casting about for laws with which to charge her, or creating new laws so that they may charge similar future parents.
I observe with interest a quotation from the press release of Campbell County, Tennessee district attorney general Lori-Phillips Jones:
Caryville police and caseworkers “went above and beyond the call of duty to care for this young lady to ensure that she suffered no harm during the short time frame between her discovery and the subsequent intervening actions from the state of Illinois which placed her in an appropriate facility in her home state,” the news release states.
Temporarily caring for the woman is “above and beyond the call of duty,” or supererogatory. Failing to care for her for the rest of her life is an inexcusable moral failing on the mother’s part.
The one voice I’ve seen that defends Cameron is from a mother of kids without disabilities. I agree that charging the mother with a crime is not warranted and would be of little help to anyone involved. I disagree, along with all commenters, that Cameron’s actions were not blameworthy. There is no question that Cameron could have acted better by her daughter. Moreover, should have acted better by her daughter.
It is not at all implausible that my child will end up with a developmental age of 3. Indeed, my current best guess is the 3-6 range (with money on 4). So I have thought about what our future will look like rather a lot.
For everyone else, as their kids get older, parenting gets easier. Not for those of us in Holland. As my kid gets older, everything gets harder. If he never walks, we will have to deal with carrying and diapering a large adult. It is already difficult as it is. If he does walk, we have to figure out how to toddler-proof our house for someone of adult height. Traveling gets more difficult. Going out in public gets more difficult. Etc. And there will never be that point where we can say, Well, we’re done now. Did a good job, didn’t we? He’s on his own now!
I do not forgive Eva Cameron. We have special obligations to our children and that is that. Some children require more than others. So, unlike the implication of those who tell me I’m amazing for doing my job, I believe we in Holland are obligated to do our job.
However. Those casting stones at Cameron could stand to be a bit more sympathetic. You (most likely) will not have to manage someone throwing food at every meal for the rest of your life. You will not be changing diapers for the rest of your life. You will not have to admonish your child not to pull hair for the rest of your life. You do not have to get a babysitter any time you want to go out the rest of your life, and one that will charge more and must be extra-trustworthy – the local high school kid won’t cut it. You do not have to navigate an insane and incoherent array of ever-vanishing resources to help you care for your child. You will not go into debt for your child’s medical bills before your own start rolling in. You may do this temporarily for a parent. That obligation generally starts much later and ends much earlier. This is the rest of your life.
I think Cameron was, in her completely bollixed way, trying to do right by herself (which she has every right to do) and half-heartedly trying simultaneously to right by her daughter:
…[T]he Algonquin mother of three says she could no longer cope with her 19-year-old daughter’s disabilities, escalating behavioral problems or medical bills.
As Tennessee officials investigate possible criminal charges against Cameron, she said she doesn’t want to bring her daughter back to Illinois. She doesn’t believe the state will provide adequate medical services or housing for the young woman, who functions at the intellectual level of a 3-year-old, Cameron said.
“We want (her) in the South,” Cameron said. “She can’t do snow”…
Advocates for the disabled say they increasingly hear from people who are overwhelmed as caregivers and desperate for help in navigating a confusing array of social services. In Illinois and elsewhere, already scarce services are shrinking because of budget cuts. Both Tennessee and Illinois have a lengthy waiting list for housing for people with disabilities, the advocates said….
Kendall Marlowe, spokesman for the Illinois Department of Children and Family Services, confirmed that the agency began working with the family April 12, months before Cameron abandoned her daughter.
“We were providing supportive services to this family, trying to help the mother understand the proper way to provide guardianship to a disabled individual,” he said.
Cameron, apparently unhappy with the social worker’s advice, said she recalled that a member of her church suggested that Tennessee offers better services to people with disabilities. She said she planned to take her daughter to a church in that state but didn’t make it to her final destination.
While traveling, Cameron’s daughter got sick, drank a lot of liquid and wasn’t physically able to urinate, she said. Cameron stopped at the bar, which she said she believed to be a restaurant, and left her daughter in the restroom.
“I knew she needed 911 and I couldn’t do it,” her mother said.
Cameron said people have drawn the wrong conclusions.
“People started to think the wrong thing, that I shoved her into a bar,” she said. “It has started to affect our jobs. … There is no neglect or abuse.”
Of course, she should not have left her in a bar. Why not a hospital or some such, for heaven’s sake? Or of course, how about not abandoning her at all? But. I do understand what it is to have obligations to other children. I do understand that a government agency can feel as if it has provided you with support (see Kendall Marlowe’s statement above), when in reality it has provided nothing but incompetence, condescension, and intrusion. I do know what it’s like feeling, when I’m changing a diaper, this is for the rest of my life. I’ve made my peace with it. I also almost certainly have more money, social support, and willingness/ability to navigate through various avenues of care — and government and insurance bureaucracy — than Eva Cameron.
Let’s stop pretending you think I’m doing something extra special by simply taking care of my kid. The fact is, you don’t. Not really. And you shouldn’t. Morally, I do have to take care of him. For life. On the other hand, however, let’s remember that it is in fact more difficult to care for kids like mine.
It drives me crazy when people say they could never do the work I do with adults with disabilities. You don’t even know what I do! Once people have a good understanding of my job, they almost always say that my job sounds awesome. Because it is. Most of the people I support rock. Some are unpleasant people to be around, but, hey, that’s life.
I’m surprised that kind of comment gets made to professionals, too. Interesting. I feel bad, because such a comment is usually meant as a compliment. But it rubs me the wrong way (especially “he’s lucky to have you”).
It’s certainly difficult to respond to. I’ve taken to gently, subtly educating them. I share with them what I love about my work and let them know that I truly love going to work every day. How many people can say I feel lucky to be a part of people’s lives? There are many benefits to getting to know people. I don’t know… It’s the only thing that stops me from giving them a funny look.
Duties are difficult things. Maybe it’s wrong of me to say this, I don’t know, but I don’t think we really believe that parents or anyone ought to be responsible for the kid to the day they die. The budget cuts are indicative that we feel that, if push comes to shove, that it’s better to give money/support to those likely to get back on their feet. Now, maybe that’s a callous thing to believe, maybe it’s cruel.
but, there is some sort of reasoning to it.
If you and a couple of other families were the last people on earth, and food was tight… it’s a hard thought experiment. and if you vociferously disagree with my conclusion, then… I don’t think I could go through with it without your consent (nor would it be just, in that case). But I do believe that it would be better for the person least able to help themselves, and least likely to help the rest… to take the bullet for the rest of the people.
I’d say it myself, if I was 80.
This is pretty hard to think about, or talk about.
But it is a very large burden to saddle on one or two people, to have to take care of someone until they die. We don’t mandate that folks have to nurse their dying in the hospitals, do we? Or in hospices, which might be a more apt comparison, as less medical training is needed…
A. I think this should be a moral, not a legal obligation. I don’t think the mother should have been charged, I don’t think they should be trying to make a law.
B. Most parents are very willing to take care of their kids. Some aren’t. It’s kind of rough luck for those who ended up with parents unwilling to take care of them, “well, screw you, you’re on your own.”
C. The scarce resources issue does not apply. Our resources are not scarce, and we don’t have to sacrifice disabled people for the greater good. We can take care of disabled
D. I know it’s not very popular on this site. But I think a helpful answer would be to increase government support of caregivers. There is no charity that could adequately handle it. Make sure no one has 5-digit (or more) medical bills from a child, everyone gets respite hours, that the waiting lists for group homes are not insanely long, that group homes are well-supervised, etc. The proportion of developmentally disabled in our population is small enough so that this could be done with relatively little burden on everyone.
a) hmm… I’d like to say that I’m saying that parents of disabled children should have less of a duty — perhaps because a part of me says, “they didn’t sign up for that!” (life’s not fair, I know…but i think it’s also because of the seeming never-endingness. I know I would hold someone whose child was likely to gain independence as morally wrong if they didn’t sink a ton of resources towards getting them there.)
I agree that the woman shouldn’t be charged.
Less of a duty does not mean not having a moral obligation… hmm… it strikes me that I haven’t run across any philosophers who will rank duties (like Maimonides ranked acts of tzedakah).
B) yeah, it is really tough luck for the kids…
c) yes, naturally it doesn’t apply. But I think exploring it shows that we have something of a ranking of duties, even if the ranking doesn’t show up in normal business (though perhaps it ought to).
d) I’m down with that.
Hmm… In thinking about this, I find myself saying that the government ought to give support for these parents to go on vacation (taking care of the kids in the meantime). If nothing else, it gives parents time to destress and relax, and have some together time. and it’s more economical than having to deal with the wreckage caused by (a few) people not being able to deal with a lifelong duty.
Respite is a big deal and it is ignored.
And philosophers spend no small amount of time talking about ranking duties.
I don’t think they should be trying to make a law.
Theoretically, they can’t make a law; ex post facto, you know. In practice – well, my home state of Illinois is involved, and we recently passed a law allowing hearsay testimony, more-or-less for the express purpose of putting Scott Peterson in prison.
Well it’s about fucking time!
I was suffering from Rose withdrawl.
Thanks! Nice to hear!
This is a powerful post – and resonates with my own familial situation, as different as the two are. People keep telling me “I couldn’t handle even the tiniest piece of what you are going through!” etc. – and it’s not just the implausible compliments, it’s also the unvoiced (almost always unintended) implication that I can keep going without needing the support they would need, that my apparent sturdiness means that I am Somehow Special, and thus they don’t really have to help me out in the way that they might want help, if they were up this particular creek. [NB: I am actually getting a lot of help. But I have to work pretty hard to make sure I don’t end up back in the game of Maribou Can Do Anything Under Any Circumstances – something I’m managing mostly due to other people who don’t buy that crap.]
Of course, I caught myself saying nearly the same thing to my sister, who is much more directly affected by the situation… ech. It’s a fine line between “You are doing an incredibly hard thing in a way that I find inspiring,” and “I could never do that.”
Maribou, are you a caregiver? And you are right both about the fine line, and about the implication that I must not need help, so…don’t ask for any. In fact, a post I plan to write soon is on when people say, “If there’s anything I can do….”
Hm. I don’t *think* I’m a caregiver – at least not in the non-crisis-based sense of helping someone who needs that help more than the average adult person does. There’s no one other than me, Jay, and the cats who depends on me for daily sustenance, help with daily functions, and so forth (and with Jay, it’s interdependence – very different).
In a historical sense, was I a caregiver for most of my childhood/teenage years? Yes, particularly when one or both of my parents quit working right for a while. (I wasn’t always very good at it; but that’s okay. All us kids turned out pretty swell.) In an existential sense, my nurturing responsibilities, past and present, probably have deeper roots in my heart than anything else I do.
Sorry to be cryptic / melodramatic-sounding / whatever, but explaining myself more than that would be pouring fresh salt on raw wounds right now – and yet, I wanted to explain as much as I could.
Blargh. Even just rereading that I feel a bit odd and need to point out that my mum, despite her flaws, is pretty awesome now, and did do her best back then. Mostly, the problem is/was/has always been my father.
There, enough said.
Sorry, I took from your first post that you were addressing an issue about which you had been open on the League, but I hadn’t come across. Otherwise, I never would have intruded.
Oh, you know – I’m working things out and it helps to talk about the things I can talk about… if you had asked and I just didn’t want to answer at all, I would’ve dodged.
I’m pretty sure we can all agree that Jaybird would be lost without you.
She saves my life on a daily basis.
Also, I look forward to reading that post.
I think this is a very serious societal issue:
I imagine that previously people like your son were either killed very swiftly or sent to horrible institutions and treated with contempt. Now such treatment offends our notions of dignity and decency. However, we still don’t want to fully talk about the costs of caring for adults with serious developmental disabilities.
I support your choice d. We need a lot more of that. We also need to train many more people to be professional caregivers and possibly set up many group homes.
Worth noting that for a kid born in 2009, at least one doc suggested passive euthanasia, another suggested I could have smothered him, and another that I institutionalize him. So these ideas are still around.
But yes. 30 years ago would have meant euthanasia or institutionalization (which in turn led to frequent early death). And now, no. There was a really sad murder suicide situation involving a family with my kid’s syndrome, and I have to think if there were other options, it wouldn’t have happened. The ideal, which can happen, is an adult ends up at a group home with a truly supportive staff, intense family involvement, community involvement. Obviously, most families can’t pay for this out of pocket. Even if we can, we can’t. We can’t keep any money in our disabled child’s name. Otherewise, he won’t qualify for Medicaid, which can handle expenses such as wheelchair ramps, bathing chairs, etc.
“The ideal, which can happen, is an adult ends up at a group home with a truly supportive staff, intense family involvement, community involvement.”
I’ve seen it work. I’ve heard some horror stories too. Some in my own area. Not to freak families out, but be involved.
“Obviously, most families can’t pay for this out of pocket. Even if we can, we can’t. We can’t keep any money in our disabled child’s name. Otherewise, he won’t qualify for Medicaid, which can handle expenses such as wheelchair ramps, bathing chairs, etc.”
I see a long career for me trying to figure out how to change this. There has to be a better way.