Rant about board books: Ten Little Fingers and Ten Little Toes

I came across this book in the bookstore when Monkey was around 8 months old and it upset me at the time. I’ve been reminded of it lately because Monkey has fallen in love with Helen Oxenbury’s Tom and Pippo books and wants to read them constantly. Oxenbury illustrated, but did not write, the book this post discusses.

“There was one little baby who was born far away, and another who was born on the very next day. And both of these babies, as everyone knows, had ten little fingers and ten little toes.”

This is how the book (Ten Little Fingers and Ten Little Toes, by Mem Fox) begins. It goes on to show different babies born in all sorts of different places and countries (in the city, “on the ice”, in a tent) while emphasizing that all of these babies have “ten little fingers and ten little toes.”

OK, except not all babies are born with ten fingers and ten toes. And by using this standard anatomy as proof of our common humanity, the book actually implies that children who are born missing a hand or a foot or some fingers are not fully human. Chinese children and Inuit children are like us, but children with ectrodactyly are not like us. If their lack of fingers and toes shows up on an ultrasound, we might decide to terminate the pregnancy and try again for a real baby.

When I vented to my mom about the book, she asked why I didn’t have a problem with books like All of Baby, Nose to Toes or Ten Tiny Toes (seriously, what is it with the baby toes???). I told her that these books merely describe a typical anatomy. You could even modify it for your child and say “eight tiny toes” if you wanted to. Mem Fox’s book, however, states that “everyone knows” that all babies are born with ten toes and ten fingers, thus shutting out the reality and humanity of atypical anatomies in a much more explicit, unavoidable way.

I know, you think I’m overreacting. I know, you think this is silly.

Looking at the customer reviews on Amazon, I was pleased to see a few that pointed out the problem with the book. Then I was disheartened to see the comments on these reviews, for example: “Are you for real? […] If YOU want to teach about differences a great opportunity arises after you read the book. The publishing business does not allow for such luxuries.” And “Your poor child growing up in that joyless environment where they can’t enjoy life because there is another child somewhere who isn’t. How sad.” OK, first of all, having a disability =/= not enjoying life. Nor does having parents who are aware of genetic diversity create a joyless environment.

Imagine that a well known author and illustrator team up to write a book called White Skin and it begins like this:

“There was one little baby who was born in a castle and another who was born to a lowly vassal. But both little babies, regardless of kin, had big bright eyes and rosy white skin.”

Now suppose that critics applaud the book for teaching children that our common humanity transcends social class, that no matter who our parents are we all have white skin.

“But some of us have black skin or brown skin or -”

“Shut up! The publishing business does not allow for such luxuries! If you want your child to know that some people have dark skin, you can explain it to them on your own time. But I feel sorry for your child growing up in that joyless environment.”

No one nowadays would publish this hypothetical book, but Ten Little Fingers and Ten Little Toes is doing the same thing. The reason one seems absurd and the other doesn’t is that we have, as a society, refined our definition of human-ness to include those of different colors, races, and cultures. This is not to say that racism doesn’t exist anymore or that there hasn’t been a backlash, but racial variation has been accepted in a way that has yet to happen for anatomical differences.

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Antipsychiatry stigmatizes people like me

Psychiatry has a long way to go. With or without good intentions, there have been some inhumane treatments and serious abuses committed throughout the history of psychiatry. There is a lack of choice, and financial injustice in our current mental health system. Therapeutic methods have improved since Freud (although it can still be quite the challenge to find a good therapist, much less one who takes insurance) but psychiatric drugs are in their infancy. There needs to be more research, more neuroimaging etc. Constructive criticism of psychiatry, wanting the field to evolve and improve, is not what I mean by antipsychiatry.

So what do I mean?

My definition of antipsychiatry is an ideology which makes the following claims:

1) No psychiatric conditions have any biological or physiological basis.

2) Psychiatric labels are merely a way to pathologize normal variations of human thought and experience.

3) Psychiatric patients must leave the system of psychiatric treatment in order to “recover” from their condition.

Many anti-psychiatric believers are former psychiatric patients who claim that they have recovered, often with some form of special diet or spirituality. They feel that they were wrongly plastered with psychiatric labels, stigmatized and given harmful treatments. I felt somewhat like this at one point in my life, so I’m sympathetic.

But, while I can’t argue with their personal experience (including the possibility that they were misdiagnosed and inappropriately treated, which happens), I believe the ideology they have adopted as a way to make sense of that experience actually contributes to stigma against people like myself, who accept the labels we’ve been given and continue to make use of psychiatric treatment despite its shortcomings.

First, I’ll try to explain why I disagree with each of anti-psychiatry’s claims.

1) It’s true that there’s a lot we don’t know about the brain, that psychopharmacology is largely experimental at this point, placebo effect is a tricky factor, and many psych meds are actually medicines for other conditions (e.g. lamotrigine, an anticonvulsant used to treat bipolar disorder), their psychiatric effects having been discovered accidentally. Finding a medication that works for an individual is a process of trial and error that may involve unpleasant side effects and worsened symptoms along the way. Side effects can be serious, even life-threatening.

But all this is true of other areas of modern medicine as well. For instance, when I was in preterm labor I was given shots of terbutaline – an asthma medication that happens to be used off-label for preterm labor. How is this any different from lamotrigine being used as a mood stabilizer? My son tried three different reflux medicines before we found one that was effective and did not have unacceptable side effects. Yet no one is using this to argue that gastroesophageal reflux is not a real, biological disease. Why then do people take seriously the anti-psychiatric claim that trial and error with psych meds proves our conditions have no physiological basis?

Furthermore, why are the side effects of these medications considered acceptable when treating seizures but not bipolar disorder or schizophrenia? Isn’t it because people more readily acknowledge the reality and seriousness of seizures than of mental disorders? But these disorders can also be matters of life and death. (I’ll note here that people go on special diets for seizures just as they do for depression, sometimes with positive results. The lines between so-called mental and neurological conditions are much finer than anti-psychiatry acknowledges.)

Believers in anti-psychiatry often say that these drugs are overprescribed. I do believe that some drugs, like antidepressants, are overprescribed, but that’s largely because they are handed out like candy by primary care providers. I’ve experienced that firsthand (being prescribed an antidepressant by an OB who hadn’t done much of anything to gather my psychiatric history and refused to follow-up or adjust my dose) and I also have friends whose PCP prescribed antidepressants when what they really needed was therapy. The fact that people who don’t have a physiological mood disorder are being prescribed antidepressants by doctors who aren’t psychiatrists does not mean that no one has a physiological mood disorder.

2) Sure, schizophrenia is a normal variation of human thought and experience. So is having a brain tumor. I’ve volunteered at downtown homeless shelters and talked to plenty of people with untreated schizophrenia. I have a relative living with untreated psychosis. I also know people who are being treated for various forms of psychosis, with varying degrees of success. Schizophrenia is a real and serious condition and antipsychotic meds can help in pretty amazing ways. There are always resistant cases.

There are some interesting studies suggesting that long-term recovery rates for schizophrenia are better in some traditional cultures (eg. in Africa) where they don’t have these drugs and their understanding of the disease is different. Anti-psychiatry believers point to these studies to prove that psychiatry prevents recovery. However, I think it’s a stretch to say that people who believe their relative is temporarily possessed by evil spirits are treating schizophrenia as a “normal variation” whereas those of us who believe it has biochemical origins are “pathologizing” it.

I do agree that there is a danger of pathologizing every experience that doesn’t fit within our culture’s ideology, and that we have a tendency to do this. Giving an antidepressant to a teenager who’s depressed because her parents are getting divorced is one example. That’s an inappropriate use of psych meds. I don’t accept that I am “sick” because of the mood symptoms I deal with on a daily basis. That’s just my brain.

But when I’m having an acute and severe depressive episode, I’m every bit as sick as if I had the flu. If that’s pathologizing my condition, then so be it.

3) If you’ve recovered from your condition without psychiatric treatment, great. John Nash is one high profile person who reportedly did so. Different people define recovery differently. For some, it means having no symptoms; for others, it simply means living and functioning with your symptoms and accepting yourself as you are. I guess I could consider myself in recovery by that second definition, but it’s a temporary state of recovery because I know that at some point in the future I could wind up on a psych ward.

And that’s the thing: my condition is cyclical. When I was in college, I thought I’d recovered. Then lo and behold, I got depressed again. Exercise and eating right didn’t prevent it, nor did my meditation practice or my relatively newfound faith. So rather than clinging to the belief that I was recovered, I once again sought professional help. Therapy helped for a while, and then – while still in therapy and doing all those other good things – I got depressed again, quite badly.

I am grateful to psychiatry. Thanks to psychiatry, I survived my teenage years without permanent scarring or organ damage. Thanks to psychiatry, I was able to take care of my medically complex newborn when I became a mother. Psychologists and psychiatrists have been there for me during acute crises (and no, they didn’t charge me for needing them after hours). These are all serious and important things. Not everyone needs psychiatric treatment as part of their ongoing recovery; but I do.

And this is why anti-psychiatry stigmatizes people. It makes the claim that no one needs psychiatry – but what this really amounts to is a claim that no one should need it. It plays into the American notion that we have total control of our mental state, that mental disorders are the result of a weak character or need for attention. By implication, people who still utilize psychiatric treatment are stupid, deluded, misinformed; or they’re sheep who mindlessly do whatever they’re told; or they’re victims of the system who should be pitied and/or rescued. These ideas are more demeaning than anything a therapist or psychiatrist has said to me.

Just as there are bad psychiatrists out there, there are surgeons and gastroenterologists who are jerks (trust me, I’ve met them), who make their patients feel demeaned or who are incompetent in their fields, but this doesn’t prove that modern medicine is all a farce. Some people believe it’s a farce, usually based on one or two bad experiences with doctors; when I encounter such people, I generally find that they have a negative attitude towards my son’s medical team and our treatment choices. It’s hard to judge an entire field and all its practitioners without also judging the people who are benefiting from that field.

Anti-psychiatry believers complain about the stigma attached to diagnostic labels. I can’t help the feeling that at least some of these former psychiatric patients have chosen this ideology as a way to make a radical separation between themselves and the “psychiatrized” population. Psychiatric labels no longer apply to them, so neither does the associated stigma. They no longer take medications, so they don’t have to deal with the stigma of that, either. People who survive cancer don’t generally go on a campaign against oncologists and cancer treatments (although the treatments are brutal enough) or object that their cancer was pathologized. Is that because cancer is more “real” than mental disorders, or because it’s less stigmatized? Is it possible that anti-psychiatry among former patients is driven by internalized saneism?

For the rest of us, who accept our diagnoses – at least as approximations of an underlying reality – and find meds helpful, the stigma is still there.

Psychiatric conditions need to be normalized, but not by denying their reality or attacking treatments that help people, that literally save lives. That is the opposite of helpful.

Reblog: Live boldly by staying alive!

This post discusses suicide. If you need to talk to someone, please call Lifeline on 13 11 14, or QLife 3pm-12am on 1800 184 527, or the equivalent support service in your country. It also contains spoilers about the book and the film Me Before You. Me Before You is released in Australian cinemas today. I…

via Me Before You – disability as a tragedy and the laughing able gaze. — Tune into Radio Carly

 

First time hearing about this movie and the controversy surrounding it. As someone with a psychiatric condition that has included suicidal thoughts in the past, I find it interesting that these thoughts (and intentions, and actual action) are sanctioned in the case of a physical disability, but not in the case of a psychiatric disorder. And when the two coexist, do we ignore the latter? does depression still look like depression when it occurs in a physically disabled person, or does it – to the able bodied – look like rationality?

Unconscionable

https://www.texastribune.org/2016/06/14/one-year-later-texas-moves-cut-therapy-programs/

I wish Republican politicians would stop pretending they care about human lives.

I consider myself pro-life, although this has become less of a legislative stance for me and more an ethical one, because I think making abortion illegal right now would cause more problems than it solves. I am completely against eugenic abortion, which is aborting a fetus because it’s been found to have a disability. But I also feel that I have no right to ask another woman to give birth to a disabled child, a child with extraordinary needs, unless I also support, advocate for and contribute to resources to help her meet that child’s needs.

I don’t believe you can be pro-life while cutting resources for disabled children. You can pay lip service to the concept; but clearly you don’t understand what it means.

To the woman who just SAHM-shamed me

Monkey and I were at the public library for the story-time we try to go to every week (we frequently miss due to hospital appointments or post-surgical stuff). I was stressing out a bit because Monkey was very wound up, running around grabbing and stacking things and almost running into people (sometimes actually running into them) and so forth. I tried to calm him down, did some joint compressions which attracted curious looks from other parents. He didn’t break his skull or anyone else’s so we’ll say I succeeded.

Afterwards, I was chatting with an older woman who was there with her granddaughter. We talked about insubstantial subjects, like camping and reading programs. She asked where I grew up and this was where I started to feel a bit uncomfortable, like she was sounding me out. And then she asked me if I was a stay-at-home mom.

I told her yes, because that’s the truth. Her response? “You’re lucky. I wanted to be a stay-at-home mom, but I had to work.” So saying, she got up and left.

I sat there alone, fighting back tears while Monkey finished his snack. I fought tears all the way to the car and then let go.

Of course, it’s true: I am lucky. I’m lucky in lots of ways and privileged in some. But she made a snap judgment that went way beyond that. She made a judgment about my whole life and my whole character and decided that I wasn’t a person worth her time.

I wish I’d said something to her. Something like, “Lady, you don’t know a damn thing about my life. You don’t know that I come from a family of abuse survivors or that I have at least one psychiatric condition I struggle with every day. You don’t know that I had to quit my minimum-wage job because I was being made to work alone with violent schizophrenic clients while heavily pregnant, thus putting my baby in danger – the baby I’d just been told had a tumor that might be cancer. You don’t know that my son’s second birthday, combined with the birth of an acquaintance’s new baby which should be a joyful thing, triggered traumatic memories and feelings around my son’s birth.

“You don’t know that I can’t put my son in daycare even if I wanted to. He was on oxygen equipment full time for more than a year, and I quarantined him (oh, the isolation) for much of that year, mostly going to the hospital for appointments, tests, and surgeries. You don’t know that he continues to have therapy three days a week and surgery every couple months with extensive aftercare that I am one-hundred per-cent responsible for. You don’t know that every time he gets a cold I have to have him on a pulse-oximeter and watch for retractions; usually he ends up needing oxygen, sometimes has to be hospitalized. For a cold. How would this work in a daycare setting?

“You don’t know that I have no social life, no close friends, barely any support system. You don’t know that my husband and I used to work opposite shifts and barely see each other, or that he now takes frequent business trips. You don’t know the financial sacrifices we’ve made for me to stay home, that we get medical and minimal food assistance and are still scraping by paycheck to paycheck.

“I am NOT some spoiled princess lying around at home while my husband brings in the cash. I am a therapy mom, a hospital mom, a low income mom. I work hard. I cry a lot. I worry. I feel lonely and overwhelmed. I am exhausted every single day.

“But you didn’t bother to ask about any of that, did you? I don’t know what your experience of mothering was like, either, but I would have listened if you’d stuck around to tell me.”

Can we please move past the “mommy wars”? Can we move past the suffering contests? “I have it harder than you” – who can say that and be absolutely certain it’s true? Can someone whose family was killed by genocide say it to someone whose brother was murdered? Can a woman who was gang-raped say it to a woman who was raped by one person, or to someone who was sexually abused for years in their childhood? Should we have the gang-rape victim and the CSA victim battle it out on a reality TV show – “There were ten of them at once!” “Well mine went on every day for six years!”

If that’s grotesque and inappropriate, why is it OK for moms to do this to each other?

How can you compare suffering when the same experience doesn’t even affect the same person the same way? Do you take into account an individual’s capacity for pain – their learned coping skills – their history – their temperament – their faith – their expectations? Does the same experience affect the same person in the same way at different times in her life? How can you compare suffering?

More fundamentally, why do we even want to?

 

Feeding therapy: minimizing waste and cost at home

This blog’s been quiet for a couple weeks because my mood’s been too unstable to write or even read much. I’m waiting on an appointment with a new psychiatrist and some med changes.

Most of my spare energy lately has been going into reading about and obsessing over my son’s eating issues. I was pleased to see that one book that I checked out from the library, Helping Your Child with Extreme Picky Eating, mentions the issue of food insecurity: “If you struggle to get enough food, or are concerned about spending money on foods your child is not likely to eat, we will address this in later chapters.”(55)

But then they don’t. Unless you count this:

“If you are concerned that what you buy won’t get eaten […] buy one Asian pear or zucchini, or a snack pack of a new cracker rather than an entire box. Know that wasting food is part of the process – for a while. Redefine waste – if you don’t offer new or challenging foods, that’s a wasted opportunity!”

Spoken like someone who’s never experienced food insecurity. (And apparently low-income moms aren’t smart enough to figure out that they can save money by buying less food…)

I want to address this issue, because I’ve thought about it a lot ever since Monkey started refusing food, around 8 months of age. Then we started feeding therapy and were expected to play with food constantly with no expectation of eating it, with no acknowledgement of the financial effect on us. If you’re already paying for formula, Pediasure, Duocal or another expensive supplement to replace the foods your child isn’t eating, this makes it that much harder to buy food that won’t be eaten.

Food insecurity creates a lot of anxiety around food. Having a child with food aversions also creates a lot of anxiety around food. Put the two together and you have SO MUCH ANXIETY ABOUT FOOD. Which can make your child’s aversion to food worse as they pick up on your anxiety.

So, here are some ideas for saving food and money if you have a child with clinical feeding problems.

Ask your child’s feeding therapist to give you any leftover food that was used for your child during a session and would otherwise by thrown away. For instance, if she opened a small container of applesauce or used part of a tangerine, you might be able to take the rest home, refrigerate it, and use it during the week.

When possible, use food that you are eating to play with with your child, but give tiny amounts. So for instance, say you made chicken soup; give your child one or two small pieces of carrot from the soup, or a shred of chicken. (And then play therapy games with it.) If you boil an egg, give him a thin slice or cube and eat the rest yourself. Buy those bulk tangerine things and give him a slice or two every day while you eat the rest of the tangerine yourself. Etc.

If you make something specifically for your child, refrigerate it and use tiny amounts throughout the week. For example, last week I cut up one baby carrot into matchsticks, parboiled the sticks, and refrigerated them. I got a week of therapy stuff out of one baby carrot. (I ate the rest of the package, or chopped them up for soup.)

If you buy something for your child to try and it just completely doesn’t work out, and you don’t want to or can’t eat it, ask a mom friend if her child might like it – then you can swap the remainder for something of hers (like one of those snack packs she bought 50 of because her toddler loved it for a week but now the toddler hates it).

One therapy game involves having your child feed you, with a spoon or his fingers depending on comfort level. This has a lot of different benefits – he gets to feel in control, he gets to observe you eating close up, and he might even touch the food. It’s also a great technique for not wasting food, because the food being “played” with is being eaten – by you. Yum! (Note: do this when you’re slightly hungry. If you’re too hungry, you’ll get impatient with your child for feeding you too slowly. And if you’re not hungry at all, it feels kind of gross.) (Disclaimer: I’m not a therapist and I don’t know your child; if he’s in feeding therapy ask his therapist about this technique.)

My estimate is that, on average, I spend less than $0.50 per week on uneaten therapy food. So that’s not so bad.

Anyone else have tips to share?

On being the white person in the WIC office

Yesterday as I parked behind the WIC office, I saw a woman getting out of her car with 3 kids. Not unusual outside the WIC office, but one thing was unusual: she was white.

I’m usually the only white person in the WIC office. Other moms are Hispanic or black. So are the people that work there. Likewise, most of the people living in my income-capped apartment complex are racial minorities, and so were my coworkers when I worked in home health.

So when I saw this woman get out of her car, I thought, “Huh, is she really going to WIC?” She walked past the front entrance, but then backtracked and went in, so I figured it must be her first time going there. Sitting at the desk to get Monkey’s benefits renewed, I overheard (I wasn’t eavesdropping, she was standing right behind me while Monkey played with her kids) why she was there: she wanted to apply to be a peer breastfeeding counselor. I kind of laughed inwardly, not at her, but at the whole situation.

If you don’t see the problem, let me explain it. All of the moms and kids receiving WIC benefits (except for me – pretend I’m not there) are black and Hispanic. The only white mom there is not there to get any kind of help, she’s there to graciously offer her help with breastfeeding, something that she probably was able to keep up for a while due to either a) not working and being supported by her spouse, or b) having a white collar job that allows pumping breaks. She’s not a former WIC recipient who wants to give back; she’s never been on the receiving end of the benefit mill, but she wants to be on the giving end.

When I was a teenager in middle-class white suburbia, I wouldn’t have seen a problem with this. But now I do. I saw in that mom a previous version of myself, wanting to help people but totally clueless about class and race and my own privilege. Except she’s probably at least twenty years older than my teenaged self and still stuck there.

A lot of people are stuck there. I meet them every day. Like me, they are middle class, white, college-educated. But their current financial and living situations are different from mine. They live on the upscale side of town, I live on the side with the box stores and trailer parks. (And police. Lots of police.) They worry about their mortgage, I worry about our monthly heating bill. They can afford to complain about WIC’s paternalistic brand-policing and the fact that they won’t let you buy free-range eggs. (I don’t like it either, but my family needs to eat, so we eat the eggs that WIC pays for and we’re grateful for the help.) They may be aware of these differences in our situations, but they don’t feel the difference; I feel it. And that’s the point. It’s always the less privileged person that most feels the discrepancy, while the more privileged person insists that yes, the discrepancy is there, but it doesn’t really matter.

Breastfeeding counselors and others who work or volunteer at WIC (and other social service programs) should come from the communities they’re serving. Ideally, they’ve gotten help from these programs themselves. Breastfeeding is a sensitive issue. When a married white mom who’s worked in managerial positions gives breastfeeding advice to a Latina single mom who works at Walmart, hurtful things are likely to be said despite the best intentions, because the person giving the advice hasn’t been there and doesn’t get it. And she won’t realize that what she said was hurtful. She won’t even remember saying it. She might know a lot about breastfeeding, but she doesn’t know much about breastfeeding as a single mom who works at Walmart.

Higher Education =/= More Intelligence.

Good Intentions =/= Understanding a Situation.

Being low-income sucks, but I’m grateful for the perspective it’s given me. I also realize that my educational background gives me a better chance of eventually getting into a higher income bracket than my neighbors have, which means that I don’t truly grasp or experience the reality of poverty that they experience. I’m realizing that I’m still that clueless would-be helpful person when it comes to race issues. That’s an area where I need to shut up and listen.

Most of us could stand to do a lot less trying to save and a lot more shutting up and listening in areas where we are privileged.