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.