New Yorker Article about Bella Bond, the System & Critical of ACEs

Jill Lepore piece wrote a long piece in the New Yorker entitled, “Annals of Children’s Welfare. Baby Doe. A Political History of Tragedy.”

There’s so much I don’t agree with but it’s well-written and worthy of a close read.

Notably, it mentions adverse childhood experiences and ACE scores and that’s the part I’m going to write about here.

Lepore wrote:

“The murky science of risk assessment relies on attempts to quantify “trauma” and “adversity,” which, on the one hand, are meaningful clinical concepts but, on the other hand, are proxy terms for poverty. (And, worryingly, the study of trauma has both a dubious intellectual history and an abysmal track record, not least because of its role in the sexual-abuse scandals of the eighties and the recovered-memory travesty of the nineties.) Vincent Felitti, the longtime head of the Department of Preventive Medicine at Kaiser Permanente, in California, is one of the principal investigators in a body of work on adverse childhood experiences, or ace. The ace study is a collaboration of Kaiser Permanente and the Centers for Disease Control. In 1985, Felitti launched a weight-loss program for patients at Kaiser Permanente and developed a theory that obesity in adulthood was an indicator of abuse in childhood. Felitti and Robert Anda, of the C.D.C., then designed a study to trace the influence of childhood experiences on adult illness and death. After completing questionnaires about their childhoods, more than seventeen thousand Kaiser Permanente patients were assigned an “ace score,” from zero to ten, a tally of the kinds of adversity experienced before the age of eighteen. The ten adverse childhood experiences are emotional, physical, or sexual abuse; physical or emotional neglect; violence, alcoholism and drug abuse, incarceration, or mental illness within the family; and having been raised by anyone other than two biological parents. The study is ongoing, but early reports assert that ace scores are predictive. For instance, “compared to persons with an ace score of 0, those with an ace score of 4 or more were twice as likely to be smokers, 12 times more likely to have attempted suicide, 7 times more likely to be alcoholic, and 10 times more likely to have injected street drugs.”

The noble dream here is that, if only child-protective agencies collected better data and used better algorithms, children would no longer be beaten or killed. Meanwhile, there is good reason to worry that the ace score is the new I.Q., a deterministic label that is being used to sort children into those who can be helped and those who can’t. And, for all the knowledge gained, the medicalization of misery is yet another way to avoid talking about impoverishment, destitution, and inequality. “Adverse outcomes?” Spears asks. “Adverse outcomes are what happen to poor kids.”

I have to admit the tone surprises me. It’s not entirely accurate either. The ACE test doesn’t give an ACE score for anyone without a two-parent home but for a child that loses a parent through death, abandonment and divorce.

But the facts can be corrected. It’s the tone that is so confrontational and dismissive that I don’t understand. Lepore also implies that poverty is not understood to be central to childhood adversity or that somehow child abuse advocacy has taken away interest in ending the war on poverty.

I’ve not seen this to be true. My experience is that those who use ACES and have an ACE understanding of how childhood adversity impacts health for life care the most about social justice and poverty.

One of the things I most love about ACE testing is that educators and activists look at cause and context rather than symptoms and effect. This to me is important and central.

Most of the work, money and research seems focused on prevention of all types of adversity and isn’t that a positive outcome of this research on ACEs?

Looking at class and poverty is important. It’s central. It’s my understanding that this happens routinely.

Personal Impact of Understanding ACEs

Having an ACE understanding, for me, is actually the perfect blend of data, science and stats on the one hand and personal and emotional and lived experience on the other.

It helps me filter my own personal experiences though a wider social lens.

It helps organize and unite varied groups of people who sometimes have been divided by problem or symptom type (addict, alcoholic, adult child, disadvantaged, child abuse survivor, at-risk).

It causes me to look at how much we have in common and what issues we can address together?

As an adult, learning about my high ACE score empowers and validates me. In fact, I was pissed I didn’t learn about it earlier in a doctor’s office or in therapy. It would have been so helpful.

Individually, I felt such shame when I started taking anti-depressants. I resisted doing so for years and years assuming I wasn’t working hard enough or was just bad at being human. I’d wake early and run, read affirmations in the bathroom while at work, read self-help books at lunch and bath and go to therapy and try to find ways to calm myself at night. Still, I’d have anxiety, nightmares, flashbacks and never felt safe.

Healing was literally a second job. I worked and tried not to feel like hell. I got through school and was able to work but it was grueling and for year after year I suffered.

Yet, if I had known, 9 out of 10 people with the same ACE score as me to do the same I would have felt better. It would have seemed like a medical issue not just a personal one and I would have sought help and support sooner. I wouldn’t have felt like I just needed to suck it up or be tougher.

I would have sought to educate myself and supplement what I didn’t get in childhood and try to learn/get it as an adult. In my opinion, this is part of the problem with a therapy alone approach, the pain is personalized and managed rather than prevented.

To learn that not only some or half but most everyone with my same ACE number struggled with depression and / or anxiety was a relief. This doesn’t mean I think only drugs are needed but clearly there’s a problem that goes beyond my own personal resilience or ability to cope.

It wasn’t just about how well I didn’t or didn’t weather my circumstances. It wasn’t that personal. It turns out my circumstances have some pretty strong, clear and serious impacts on anyone and everyone.

This is not what we are taught to believe in our own families or in society.

It fueled my activism.

The Personal is Political (still)

Learning this not only helped me personally it made me political, an activist and a social change agent who wants others to improve society so there’s not so much disparity.

Lack of resilience isn’t what hurts people. Adversity it what hurts people.

I’m motivated, personally and politically to make my own life better and to also try to improve society so other adults will some day have to work less hard just to be human.

My blog is heal write now with the sub-title how to live on earth when you were raised in hell. It’s not a “here’s how to do it” but a fluid question. How? How the hell do people do it? Let’s write, talk and share about that reality.

And lets make sure that those who are working on our behalf have lived experience with adversity and are listening to what we need and want now and not speaking for us.

I firmly believe any program that is not informed by actual trauma survivors is not trauma informed. The people being served must be in on the brainstorming as to what changes need to be made.

For me, I focus on adults and how we can be healthy as break-the-cycle people and parents who have jobs and are citizens and are managing bills and traumatic stress.

But it’s not just how can we make our lives better but how can things be made better system-wide?

We want our kids and future generations and others to suffer and struggle less hard.

We want more resources, education and support. In school, at home and at the doctor’s office.

And we want children to be safer.

I now get why and how my personal history impacts me and my life and peace of mind AND how I’m part of a social context that needs serious and immediate attention.

I don’t see ACEs as a murky assessment tool that ignores poverty but one that shines a light on the long-term and lifelong impact of early adversity. In a way that makes me want to make change for myself and others.

Isn’t that positive? I think it is. It motivates me as a parent and a citizen. I’m more keenly aware than ever, that preventing abuse and neglect, for children, is about the most meaningful thing a person can do.

Criticisms/Doubts

If I had any criticism of the ACE study and research it is only how little there is for adults who have high ACE scores. There’s too little known about what we can do to reduce our risk of disease and early mortality if we already have a high ACE score that we can’t change. I’d love to see more about this.

But I am not yet clear on how the work of child abuse prevention is at odds with caring for people who are poor. It’s true that middle class reform of the poor and working class can happen in social service settings.

I worked at a shelter once for homeless families and sat in on a staff meeting. Everyone was talking about the rules of the house and the personal problems of each one of the people who was homeless.

I was like, “Isn’t the problem with homelessness that people don’t have homes?”

So in that way, maybe those in social services who haven’t shared the lived experience are guilty of looking at personal issues as the cause rather than seeing the money stuff clearly. Even then, and this was decades ago, I mentioned that middle class and rich people have tons of personal issues too but no one thinks those problems “caused” them to be rich.

That’s only something done to the poor.

But I think those in the ACE community understand class issues.

And I know understanding ACE’s gave and gives me a context I didn’t have. It’s one I’m grateful for.

I don’t think those of us in the ACE community don’t know that poverty is central. While ACE’s don’t discriminate and certainly impact the rich and middle class many of us have been or are working class or poor.

I don’t think we disregard the impact of being poor or having limited resources. I’m not sure how the author connects those dots. Maybe she too has worked in social services or seen some of the bias towards and reform of the poor? I don’t know.

It seems those in this community do know poverty burdens individuals and families in ways that are countless and… obvious. Economic stability is a need understood by those of us doing this work.

I don’t share the author’s viewpoint when it comes to the goal or function or dream of what ACE assessments might do.

However, that doesn’t mean I don’t have any questions or doubts about the ways others will use ACE assessing and testing.

I do.

I don’t see an ACE score as the same as an IQ test used to label and hurt people. But it’s not like I’ve not feared others might use it against people. I have.

Will some collect and use ACE scores to limit or label people?

Last month, I wrote a position paper for a healthcare company on the relationship between childhood adversity and utilization of healthcare. My intention was to promote a cost-effective writing for wellness program as an  employee assistance programs which might be more appealing and less stigmatizing to some than therapy.

That was my argument. That was part of my agenda.

I have no idea who will review the data or what will be done with the information. I don’t know if it will be a way to track and prevent hiring those that may be expensive to insure.

I do worry that high ACE score will be used in hiring or by insurance companies limit or disqualify people from coverage. Or maybe to be considered a pre-existing condition?

Surely people are thinking and writing about this as well?

There are things to consider and discuss. Of course. Discussion is a good thing.

But I’m still an ACE activist.

It’s political and it’s personal. In my own work, I summarize data and stats but I share as a trauma survivor. I talk about the personal stuff, how I cried when I saw the dose response curves which correlate with ACE scores.

It was life-changing.

I wondered how it would have felt in my twenties to believe I wasn’t just a weak or low resilience soul but to understand many of my struggles were consistent, predictable and the result of adversity.

I was actually statistically normal when compared with my peers. I was on track. Completely.

But that’s not how I had felt. I felt like a loser or a failure and like someone that couldn’t get traction despite trying hard.

Today, knowing I’m a high ACE scorer means I take self-care much more seriously as both prevention for future possible issues and treatment for the past I know I already had.

Plus, I feel less alone rather than labeled. In fact, unlike a diagnosis, my ACE score doesn’t come with any shame. In fact, I felt understood and proud of what I’ve accomplished and eager to keep being a break-the-cycle person and parent.

Anyone with a high ACE scoring people who reaches adulthood has likely already been labeled in some good way and maybe not with kindness:

chronically fatigued, auto-immune, compromised, depressed,  addict,  obese,  victim, post-traumatically stressed, super-utilizer, mentally ill, underemployed or fill in the blank..

ACEs offer the opportunity to understand and contextualize. We don’t just look at our own symptoms as a personal pathology we poke at and struggle to manage in therapy. We see ourselves in a larger social context.

And we can see society more clearly too.

Those with low ACE scores are healthier and more advantaged and have less to struggle with. Again, it’s not so personal.

They are healthier, not stronger or more resilient. They just have faced less adversity.

I want that for my kid.

I want to secure her improved lifelong health.

An ACE understanding motivates me. I’m not powerless as a parent.

And it motivates me to up my own self-care (yoga, writing and a functional medicine consult).

It makes me pro-active, as a parent, and a citizen educating, raising awareness and working on child abuse prevention.

It makes me determined to write openly and honestly so others don’t feel so alone.

So I’ll remain obsessed with ACE research, the study and the test. That’s not going to change.

That doesn’t mean there aren’t questions about how some will use screenings and assessments. There are. That doesn’t mean there aren’t ways this research can be better utilized or understood or misunderstandings about the way this information is sometimes depicted.

More on the Article

While I don’t agree with the conclusions the author makes, it is a compelling read. She’s a great writer and there is much she says that I can’t dispute. For example, those of us who live in Mass and have witnessed, worked with or been in the system know the following is true:

“Even the best reporting, though, can’t help missing a feature of the story that can be seen only from the vantage of history. Child protection is trapped in a cycle of scandal and reform. The D.C.F. was established in 1980, as the Department of Social Services, in response to the Gallison case. It was renamed the Department of Children and Families in 2008, under the Act Protecting Children in the Care of the Commonwealth, an omnibus reform that also created the Office of the Child Advocate, in response to the case of an eleven-year-old girl who was brought to an emergency room in a coma, having been severely beaten; one doctor said that her injuries were so grave it was as if she’d been in a high-speed car accident. Social workers had earlier investigated charges of abuse but had determined that the injuries were self-inflicted. The law came with virtually no new funding. (About the only mention of money, in the legislation itself, is this: “The department may pay a sum not to exceed $1,100 for the funeral and burial of a child in its care.&rdquo It was passed in the midst of both a global financial collapse and an opiate epidemic. From the time that the D.C.F. got its name until 2014, its budget was cut every year; adjusted for inflation, more than a hundred and thirty million dollars was slashed. (In the wake of Jeremiah Oliver’s death, money has begun to trickle back.)

Programs for the poor are poor programs. And they are made poorer when they fail, and when they are needed most. Natural disasters like blizzards, earthquakes, and hurricanes drive reform and the allocation of resources, leading to improvements in public safety. The tragic but ordinary deaths of people in situations in which people are likely to die don’t usually change policy. When someone dies in an ambulance, that death is not generally followed by an investigation into the qualifications of E.M.T.s. “We don’t stop funding FEMA when the economy gets bad,” Maria Mossaides pointed out, when we met. Mossaides, an attorney, was hired by Michael Dukakis in 1977 and moved into child welfare soon after the Gallison disaster. Deval Patrick had hoped that Mossaides would be willing to serve as D.C.F. commissioner. Instead, she accepted Baker’s offer to become the state’s new director of the Office of the Child Advocate. One feature of a scandal-reform cycle—“Kids die and heads roll,” she says—is a policy pendulum. “The pendulum has swung at least four or five times in the last forty years,” Mossaides says. It swings between family preservation (keeping kids with their family of origin) and removal (removing kids from their homes and severing parental rights so that the kids can be adopted). “We inevitably have cases where we don’t get the safety assessment right,” Mossaides says. “Then you have the high-profile death, and the pendulum will swing in the opposite direction.” When Jeremiah Oliver was reported missing, the governor’s office was boasting that the number of children in the care of the state was down to seven thousand: family preservation was the priority. Two years later, that number has risen to ninety-two hundred, a record. “Pull every kid” is what Mossaides suspects D.C.F. workers are being told. “The only way that happens is social workers have become afraid to leave kids with their parents.”

Clearly, we aren’t helping families enough. Clearly, the issues are obscured.

Lepore raises important questions about the society we all share and how little the war on poverty has not been won.

She explores the system and how it often fails those it aims to serve.

And the story about Bella Bond is central and heartbreaking.

She also shares searing social commentary (her own and quoted) such as this:

“Macdonald is credited with helping to launch the War on Poverty. And Kempe launched the campaign against child abuse.

Still, that doesn’t quite explain the relative lack of interest in child abuse in the twenties, thirties, forties, or fifties. This is nicely addressed by Macdonald. “There is a monotony about the injustices suffered by the poor that perhaps accounts for the lack of interest the rest of society shows in them,” he wrote. “Everything seems to go wrong with them. They never win. It’s just boring.”Generally, what has made the particular misery of babies and young children less boring is the attention paid to it by female political writers. Public attention to the welfare of poor children, the historian Linda Gordon has argued, coincides with eras in which women have had a strong political voice. It was therefore high when women were most actively fighting for the right to vote (from 1870 to 1920) and during the women’s-liberation movement (from 1961 to 1975).

Interest in the welfare of children in the sixties was also part of that decade’s ambition to end poverty. But the triumph of the report-abuse model marked the abandonment of that ambition.”

Ouch. Ouch. Ouch.

I don’t agree with many of her conclusions but I’m grateful for her contribution to this conversation.

The entire article is linked here and there are gruesome and heartbreaking details about child murder and abuse and neglect. I didn’t focus on that in this blog post but it’s a big part of the article. http://www.newyorker.com/magazine/2016/02/01/baby-doe

My own personal response, which is raw and angry, about the murder of Bella Bond is here. https://healwritenow.com/if-bel…-shed-be-a-jane-doe/

The only thing I will say is use her f’n name now that we know it. There is no need to keep calling her Baby Doe and the insistence of the media on doing so is infuriating.

But I digress because this post totally wasn’t long enough.

There’s so much to discuss and debate.

And even more to be done!