Out There I Have to Smile

May 8, 2021 5:25 PM

Heather Lanier explores the pressure to perform happiness | Happiness is an encouraged performance in America whether you’re disabled or not. But the stakes of that performance are higher for disabled people and their caregivers. Heather Lanier's memoir about being a caregiver to a child with Wolf-Hirschhorn syndrome, "Raising a Rare Girl," was a New York Times Book Review Editor’s Choice.

You’ll hear parents of kids with disabilities negotiate this pressure to be happy all the time when they describe their children. “He has Down syndrome, and he’s nonverbal,” a father will say, “but he’s happy!” Or a mother will say, “She has cerebral palsy, and she doesn’t walk, but she’s brought us so much joy!” We can’t fault the parents. They add this caveat of happiness because they know it carries necessary currency.

But this can be exhausting. It turns happiness into a rhetorical strategy, and makes the faces of disabled people and their caregivers a walking argument that should never have to exist in the first place.

posted by I_Love_Bananas (25 comments total)

Why "BUT s/he's happy" and not "AND s/he's happy"? So much ableism here. :(
posted by heatherlogan at 7:15 PM on May 8, 2021 [1 favorite]

I don't know, heatherlogan, I love my life but my particular disabilities have brought me nothing but grief. They're not a blessing in disguise or a "different ability". I'd trade them both in a second for new body parts that function normally. Other people may feel differently and that's great for them! But I'm definitely a "but I'm happy" person here.

Also, did you read the article?
posted by cnidaria at 7:26 PM on May 8, 2021 [36 favorites]

I really liked this piece.

So today is the one-year anniversary of my kidney transplant, after a four-year wait on life support. This year has been a year of multiple unexpected surgeries, two rejection episodes, the sudden lemming-like eradication of every white blood cell in my body, and within the past days a transfusion of a quart of someone else's blood to reverse a bout of knee-wobbling anemia that had left me clinging to doorways, fighting for breath. And I'm still here. It's been an emotional day/week/year. My phone has no emoji for a kidney, so I have been punctuating celebratory texts today with the image of a single potato.

Over the past five years, I've been experiencing a kind of euphoric, concentrated joy that I haven't felt since childhood. I think it's because I'm just super happy that I'm still here. I realize this isn't the constant or even the typical experience.

Obviously Lanier's experience is from a totally different perspective from my own -- she's the mother and caregiver of a sick child, and there's a layers-deep spaghetti bowl of intersectionality between being a parent, being a mother, being a caregiver, being a caregiver of a child with a serious medical condition, and being the caregiver of a child with THAT specific condition. We often say it's harder on caregivers than actual patients because the caregiver has to shoulder the wear and tear of the actual and the potential, and be prepared mentally to support every possible outcome. Lanier's role is incredibly difficult.

And Lanier's right, too, about how other people perceive all this, the messages they feel very free to send. Movies like Million Dollar Baby and Me Before You are actively offensive. I never bothered to watch MDB (why would anyone?) but Me Before You sent me into rages -- I mean, the guy has great teeth and endless wealth and can travel anywhere, live anywhere, and it's not enough? Honestly.

I see people all the time comment that they'd rather die than be less than perfectly abled. That they demand and deserve healthy partners for travel and adventures. There are countless articles about actual doctors who would firmly refuse the care I've received. There's a horrific Atlantic article from a decade ago with the bold headline of "God Help You, You're On Dialysis," which often pops up on search results, and okay, although dialysis is exhausting, it's not painful, and you're mostly in a chair watching tv trying to keep our mind off it. A prominent nephrologist once breezily assured me that if I wanted children someday, I could selectively abort if the embryo carried my particular organ-killing genetic anomaly because, as he said, it would be easier than worrying for nine months.

And she's ABSOLUTELY right about cheer as currency. It wards off the dreaded head-tilt from strangers. It gets you easier access to medication and your preferred treatment/pain management settings from medical providers (although I say this as a mild, middle-aged white lady and obviously there are shockingly ENORMOUS chasms there). It lets your friends and loved ones off the hook, in a way, because your cheerfulness (either real or performed) is assuring them that you're not going to be a constant onslaught of need.

But, yeah, being cheerful creates a FILTER to all that nonsense. Like, regardless of whether you are happy or if you are simply presenting as happy, people think twice before they say awful things about disability to your face. The more stridently optimistic you are, the more people will just resist the temptation of insulting you and just let you live your life. (People who know me well are typically great about being realistic, btw.)

What Lanier says about the inherent value and worth of the life of someone with a disability is also true. When I was healthy, I defined myself the way lots of people define their own worth: their jobs, where they live, their circles, their personal and professional successes, their taste in homes or music or food. But it's mindblowing to me how many people have been invested in my care, making sure that I've stayed alive these past five years. All this that's happened has stripped a lot of the material markers away, and I'm generally happy with what remains.

On preview: I'm a "BUT I'm happy," too. I can't think of anyone who wouldn't trade a sick body for an able one, but as things stand, I'm grateful for my outcomes. I feel like the best we can do is to make the best of it when we are able, and demand acceptance of ourselves when we can't, and that's true for patients and caregivers alike.
posted by mochapickle at 7:48 PM on May 8, 2021 [54 favorites]

I don't have words for these thoughts but I've often thought about the concept of neediness or burden; in our capitalist society being needy is the worst crime. Even mothers of nominally-abled children sometimes feel pressured to pretend that kids are not a burden.

My husband had very serious cancer surgery with long lasting effects. Caring for him through that process was a burden, yes, but it was also a tangible expression of my love for him. Talking about it is like walking a tightrope. I have to minimize both the joys and the trials depending on the audience.
posted by muddgirl at 8:06 PM on May 8, 2021 [19 favorites]

Mostly I thought reading this that there are many, many situations in life where one has to Fake Being Happy. Probably because that's what we're supposed to do in our society, regardless of whatever bad is happening to us. Illness, mental health issues, working customer service, what have you. We don't really socially allow for people to feel badly about anything a lot of the time, and god knows we shame them when they openly do.

But I didn't know that you had to fake happy at the doctor's to get your kid care, for chrissake. I don't remember that coming up with regards to my parents (dad was ill for 10 years), BUT my mother is naturally perky so I guess there wouldn't be any difference there, I suppose.
posted by jenfullmoon at 8:35 PM on May 8, 2021 [6 favorites]

I have a lot of complicated feelings about this article and this issue. I’m not sure if I’m going to be expressing myself adequately here, and maybe I’ll think of something better to say later. But I’m going to say it anyway in case I forget.

As a medically complicated child who was never not in physical pain and who also had clinical depression, the constant pressure to perform happiness at all times was overwhelming. It was huge. It was relentless.

And I didn’t even have an “in here” because some of the pressure came from within the family, and even more came from within the church. There was a constant feeling of “You should be sorry because your suffering is bumming people out, and after all that’s a much bigger problem than, you know, your actual suffering.”

I think that’s why Oscar the Grouch was my favorite Sesame Street character.
posted by The Underpants Monster at 11:49 PM on May 8, 2021 [35 favorites]

I can't think of anyone who wouldn't trade a sick body for an able one

Some deaf advocates describe hearing aids and cochlear implants, probably the most clear cut example of making a non-functional body part work as it does for the average person, as cultural genocide, which is pretty mild compared to what many autism advocates say about parents who wish their nonverbal children could communicate with the wider world easily. Those are the two I've heard the most from but I bet there are other parts of what is traditionally considered the disabled community that are just as defensive if you offered to make them "normal" or "fully functional."
posted by fomhar at 7:07 AM on May 9, 2021 [1 favorite]

This was great. I'm really interested to read her book. Her take on positivity culture reminds of one that came out a few years ago about living with terminal cancer: Everything Happens for a Reason: And Other Lies I've Loved
posted by hydropsyche at 10:28 AM on May 9, 2021 [7 favorites]

Ephelump Jockey: yes, thank you, exactly. Normalcy might be desirable to some subset of these groups but even a clear-seeming disability is something that a lot of other members of such communities would actively choose to keep, even if outsiders don't understand.
posted by fomhar at 4:47 PM on May 9, 2021 [1 favorite]

pretty mild compared to what many autism advocates say about parents who wish their nonverbal children could communicate with the wider world easily

I think that someone who would say this sentence has no standing to comment on disability rights. This is a gross mischaracterisation of the disagreement that autism advocates have with abusive and traumatising behavioural regimes that some autistic children are put through. But hey, I guess autistic people's views aren't worth that much to you.
posted by ambrosen at 5:40 PM on May 9, 2021 [10 favorites]

Thank you, ambrosen. I've been looking at that comment and its links like they're a fuzzy caterpillar: strong sense of "do not touch, to avoid self-harm".

The phrase "autism advocates" (as opposed to "autistic advocates") feels like a clear signal that the comment is not coming from a place of goodwill. Speaking from my own perspective as an autistic person, I don't advocate on behalf of autism, I advocate on behalf of autistic people. There is a difference, and it matters.

Also, as an autistic person from a family I'm pretty sure is largely autistic on both sides, I consider wishes like "we should work to eliminate autism" to be eugenics, plain and simple. People like me and my family are not wrong or damaged, and characterizing what autistic advocates say about our experience as somehow trying to shut down "parents who wish their nonverbal children could communicate with the wider world easily" is a dishonest misrepresentation of what actually autistic advocates are saying.

I flagged this comment as offensive but apparently the mods don't recognize it as such.
posted by Lexica at 6:21 PM on May 9, 2021 [8 favorites]

Excellent article - the teeth-grinding awfulness of managing expectations of how you are supposed to "perform" care and disability.

Trying to track down the author who wrote about his disability, "So there is someone saying he would kill himself if he had to have someone wipe his bum. I am here to say that I have never been able to wipe my bum; someone has had to wipe my bum my entire life, but I still think it was worthwhile that I got my PhD., and no, I am not going to kill myself."
posted by Barbara Spitzer at 8:10 PM on May 9, 2021 [7 favorites]

Well, it’s like this: all disabilities are not created equal. Yes, absolutely, some things that are considered disabilities now wouldn’t be if society just accommodated different ways of doing things. I don’t argue with that for one second.

But some disabilities are painful. Some require us to depend on physical assistance from others more than we’d like to for our basic needs. Some cause us mental and emotional distress no matter how much our needs are accommodated. Some prevent us from doing things we really do want to do.

The key is listening to what people with disabilities themselves have to say instead of making assumptions.
posted by The Underpants Monster at 8:54 PM on May 9, 2021 [4 favorites]

And while I’m venting, can we just nuke the phrase “They never let X stand in their way” from space?

There are a good number of things that stand in my way whether I LET them or not. I guess I lose the Strength of Character Contest every time that happens. No human is fucking omnipotent, not even us Inspirational Types. Sooner or later, we’re all going to encounter something that’s beyond our power to LET or not LET it do anything.

It’s like blaming a rape survivor for not fighting back hard enough.
posted by The Underpants Monster at 8:59 PM on May 9, 2021 [10 favorites]

Cosigned. While we’re at it, I’ve left my family strict instructions to avoid the phrase “lost her battle with [disease]” in the eventuality of any sort of obit or memorial.

As if there isn’t enough of a burden of thinking you’re managing your illness incorrectly, or perhaps if only you had tried the teensiest bit harder.
posted by mochapickle at 9:10 PM on May 9, 2021 [10 favorites]

Your patron saint is Stella Young.
posted by Barbara Spitzer at 12:13 AM on May 10, 2021 [2 favorites]

Trying to track down the author who wrote about his disability, "So there is someone saying he would kill himself if he had to have someone wipe his bum.

Worth Living, by Harriet McBryde Johnson:

"Here's one I hear a lot. You think it's humiliating, degrading, undignified, to let another person wipe your behind. I know yours is a common attitude, but to me your revulsion seems - well - neurotic. What's the deal? When you can't wipe yourself, of course someone else does it for you. Did you degrade your infant child when you wiped that silky rump nice and clean? Were you degraded? Certainly not. There's no shame, and without shame, there's no humiliation.

Everything she wrote is worth reading.
posted by Mavri at 4:34 AM on May 10, 2021 [7 favorites]

My daughter has a number of different things going on which lead to regular hospital visits, pain, operations, and unpleasant medicines with complex side effects. She is a brave, confident, strong, bright, funny young woman who has big plans, fantastic motivation and is an advocate for herself and others, and a sad frightened little girl who wants it all to go away and thinks that it might be better to not exist at all, often in the same day.

She HATES being told that she is an inspiration. She HATES being told she is brave. So we don't. But she is.

It is hard to see the confident, cheerful outdoor face that drops away as soon as she is through the door, and exhausted, and angry, and sore. And it is hard to watch her answer questions about how she is doing, treading a careful path between being honest, and alienating people who want an easy answer, and lying completely, so people think that everything is fine. Even when talking to doctors, we need to work to get her to be able to express what is going on because she spends so much time ignoring all of it, that it barely seems worth mentioning.

And it is the same for me.

"How is she today?" "Well, it's complicated, but could be worse."

No-one wants to hear that I am barely able to keep it together as yet another thing happens, and I STILL cannot do any more than just being there, and keeping doing what we are told, and hoping that it will help.

...

I wrote this before opening the link. I wanted to write it because I can never really express it out loud. I may share the article with her, but right now in our lives, it would be too much. Thank you for posting it.
posted by fizban at 3:21 AM on May 11, 2021 [6 favorites]

I am here to say that I have never been able to wipe my bum

As someone with a parent who is not coping all that well with the loss of their ability to care for themselves to Parkinson's, it's worth considering that an acquired disability can legitimately provoke a different reaction than a lifelong one.

There's no shame, and without shame, there's no humiliation.

Great, I'll just go tell my Dad that he's wrong to be ashamed of what he's experiencing as the loss of his sense of dignity -- which is not something you have as an infant -- and that his wrongmindedness is making it harder on the rest of us.

Or maybe I won't do that because it would be cruel and won't help any of us.
posted by snuffleupagus at 8:31 AM on May 11, 2021

A disabled person trying to reframe the common perception that their lives are humiliating and degrading is not an attack on your father. Imagine how much easier aging and illness would be if people didn't view disability as a loss of dignity. And by "people," I do not mean your father. I mean the culture that we are all steeped in from birth, that teaches us that you cannot have a sense of dignity if you have certain functional limitations. That's what she saying. She's not saying your father is wrong. She'd probably say his reaction is completely normal, but that we should all do better.
posted by Mavri at 10:16 AM on May 11, 2021 [8 favorites]

Her next sentence makes the point that what is degrading is cultural, not inherent:

If you don't believe me, believe the Sun King. In periwigs and silk brocade, Louis XIV's noblemen competed for the privilege of tending to his personal hygiene, even though he was perfectly able to do it himself. Personal assistance can be a grand luxury.

She also talks about people who weren't born with disabilities. https://dsq-sds.org/article/view/338/424
posted by Mavri at 10:27 AM on May 11, 2021 [1 favorite]

I am really not understanding how telling people who have acquired a disability they feel has deprived them of their dignity to imagine themselves as Louis XIV isn't an even more floridly offensive version of expecting someone to perform happiness.

I'm going to step away from the thread now. Dad's calling me.
posted by snuffleupagus at 11:19 AM on May 11, 2021 [1 favorite]

You're angry that a disabled woman is reframing her existence as not degrading or humiliating. I hope someday you can recognize how ableist that is.
posted by Mavri at 12:05 PM on May 11, 2021 [3 favorites]

No, I'm saying that her view runs counter to my understanding of the topic of the thread and would absolutely be of no use to my Dad, who is not going to suddenly transcend the culture he's lived out his entire life (including in gendered ways, and regardless of how I feel about them -- his personality wasn't so great for me) and become a relativist.

Not least because he no longer has the mentation to do so. But also because your culture isn't something you just change at the end of your life.

Maybe it's ableist to suggest that all disabled people have to feel the same way about their disability, or all actually are having the same experience whether they realize it or not.

Maybe the way to have a discussion about it with their caretakers who are responding in good faith to the thread isn't to call them names.

Also, I'm not angry, I'm mostly just sad and worried. But if you told my Dad he should feel like the Sun King because he can no longer look after himself, you're damn straight he'd get angry.
posted by snuffleupagus at 12:26 PM on May 11, 2021 [4 favorites]

One of my disabilities is celiac disease. I literally cannot eat food unless it is prepared in a dedicated gluten-free kitchen. Think about this: sharing food with friends, sharing food with family, food as a reward at work, stopping by a restaurant to pick up food because you're hungry, buying most packaged or prepared food at the grocery store, buying from the grocery store deli, letting your friend's toddler eat their snack in your living room. These are all things that are hazardous or impossible for me.

When I get glutened (even with a tiny, tiny amount like a crumb or flour dust settling on my food), I get suicidally depressed, I vomit, I shit myself, I get severe brain fog, and I become "clumsy", also known as gluten ataxia -- tripping over stuff, dropping things, generally diminished gross and fine motor control. This goes on for a week or two.

This makes it very difficult for me to travel. It makes it impossible for me to share an apartment with housemates to save money. I can't: Let someone riding in my car eat a sandwich. Grocery shop in a reasonable, normal fashion. Eat out, like, almost anywhere. Let people other than my mother cook for me. It is horrible, and isolating, and inconvenient, and extremely expensive (see: not being able to have roommates). There is nothing less sexy than asking your date to thoroughly brush their teeth before kissing lest they make you extremely ill.

I don't have a community of celiacs, or a celiac culture, that is a significant part of my life. My experience is very obviously extremely different than, say, a Deaf person, or an autistic person. But it's still a valid experience of disability. There's no joy for me in celiac. I'm just surrounded by invisible danger all the time, and I spend tons of mental, emotional, physical, and financial energy managing that risk (think about your experience of COVID, but for the rest of your life).

tl;dr: There are many experiences of disability. They're all valid. My own experience of the disability of celiac disease is that it's a horrible burden and the great tragedy of my life. If someone offered to take away my celiac disease, I would accept that in a second, and then I'd cry in relief.
posted by cnidaria at 9:59 PM on May 11, 2021 [4 favorites]