past the cover: how having an invisible illness made me a more empathic social worker

The first time I heard a fellow social worker say, out loud, “If you come in with a coach bag and manicured nails and tell me you’re on welfare, you’re damn right I’m going to judge you,” I almost cried.

We’re an appearance-based culture. This isn’t news to anyone, or it shouldn’t be–we live in a world where what you look like is everything. People are judged on the street, sometimes violently, sometimes fatally, by their skin color, their body shape, the way they are dressed. The way we are perceived determines how we are able to move through the world. It’s the difference between being treated with deference or with violence, with respect and safety or with disdain and assault. And this treatment has consequences: micro-aggressions build up in our systems over time to eventually contribute to experiences traumatic enough to merit a PTSD diagnosis. And statements like the one my co-worker made? Are absolutely micro-aggressions.

This made me want to tear my hair out for a number of reasons. First and foremost: social workers, we should know better. Unlike other professions, our education is firmly based on meeting the client where they are, understanding client strengths, and our code of ethics relies not only on us not putting our own prejudices aside when working with clients, but also critically examining those prejudices and figuring out if they are compatible with our line of work. This means that sometimes you need to take yourself outside of the bubble of anti-poor bullshit that growing up in a capitalist society has forced down your throat for your entire life. Fun!

Second of all: as someone with an invisible and chronic illness that qualifies as a disability, I am continuously baffled by the things people say when they think everyone in the room (or even everyone in hearing distance) thinks and feels the same way they do. I’m talking about people who say things like, “Why do people want trigger warnings on syllabi? It’s not like real life comes with trigger warnings, you need to just get over your issues.” (I’d like to introduce you to allergy warnings and MPAA ratings, bro.) Or, “She definitely wasn’t disabled, I saw her get out of the wheelchair to reach something on a high shelf.” (Pro tip: standing isn’t the same as walking! Reaching isn’t the same thing as being mobile over long distances or periods of time!) Of, “Why are you so picky about where we eat? You need to try new things!” (Hey, only certain foods won’t render me a dying mess for the next five days, but I’m trying to spare you the inner workings of my GI track. I can change that, if you’d like. How do you feel about gory details? Oh wait, you said there’s no trigger warnings in real life, so I’ll just give you ALL the gory details. Yay for you!)

The face of disability is changing, and we–social work professionals especially, but I would argue that this should apply on a cultural level–need to change our perspectives accordingly. Ask your client if she can climb the stairs to reach your office. Double check with your friend before you make restaurant reservations at that hip new place. Consider implementing a scent-free policy at your workplace. If you’re planning to walk somewhere rather than drive, even if it’s “just a few blocks”, check with everyone that it’s okay–don’t just voluntell them. Don’t make snide comments about people’s weight. Don’t call people “lame.” Google “how to not be ableist.” Learn some things.

Just like the face of disability is changing, so is the face of poverty. Over the course of the last decade, the cost of “stuff” (televisions, phones, computers) have plummeted, while the cost of living essentials (college tuition, health care, child care/nursery school, vehicle maintenance, etc) have risen exponentially. This means that people with iPhones and nice cars might be the same people who struggle to feed their kids healthy meals, maintain their homes, and pay for childcare while working at their jobs.

“But Shelly,” I hear you saying, “Why don’t they just sell their nice things to pay for those essentials? Surely if they weren’t paying for a smartphone or a flatscreen TV, they could afford food and nursery school!”

No.

Thing number one: you have no damn idea where people got their “nice things”, and therefore have no idea a) if they are in a place to get rid of them and b) if getting rid of them would make any difference to their situation at all. Take the infamous iPhone, for example. “If you can afford an iPhone, you definitely shouldn’t be on welfare,” boasts the fiscal conservative on Facebook. What an original perspective! Except that it doesn’t consider the following:

– The person could have received the phone as a gift, be on a family plan, purchased the phone and plan prior to needing public assistance, etc.
– The person could be applying to jobs in sectors that require constant access to email, news, or other media (more on this later).
– Terminating an existing plan and phone in order to trade in for a cheaper one can cost more money than the person would saved, while simultaneously removing a major resource from a person’s life (access to information, support systems, etc).

Not enough of an example? Consider cars. One of the most common “get out of debt” tricks people seem to recommend is that if you have a car worth more than $4,000, you should sell it and get something cheaper. Now, as someone who has bought multiple $2,500-$3,000 cars from Craigslist, I can tell you the following: You might get a cheap car up front, but you will pay for that car in repairs and maintenance EASILY five or six times what you put in initially. Why? Because if someone is selling a car for $2,500, there’s a reason, and it’s probably not just out of the goodness of their hearts. My first car was $2,300 off Craigslist, and every single oil change also came with a new problem (confirmed by more than one mechanic) with at least a $50 price tag. So on top of gas, oil, and registration fees, I was paying at $50-200 in repairs every three months. It adds up very quickly, and in the long run, you’ll pay more for a cheap car than you ever would for a car that is, at first glance, more expensive. Terry Pratchett put it best:

“The reason that the rich were so rich, Vimes reasoned, was because they managed to spend less money.

Take boots, for example. He earned thirty-eight dollars a month plus allowances. A really good pair of leather boots cost fifty dollars. But an affordable pair of boots, which were sort of OK for a season or two and then leaked like hell when the cardboard gave out, cost about ten dollars. Those were the kind of boots Vimes always bought, and wore until the soles were so thin that he could tell where he was in Ankh-Morpork on a foggy night by the feel of the cobbles.

But the thing was that good boots lasted for years and years. A man who could afford fifty dollars had a pair of boots that’d still be keeping his feet dry in ten years’ time, while the poor man who could only afford cheap boots would have spent a hundred dollars on boots in the same time and would still have wet feet.

This was the Captain Samuel Vimes ‘Boots’ theory of socioeconomic unfairness.”

(Terry Pratchett, “Men at Arms”)

Bottom line: if you have a well-made car that’s worth a lot of money and is completely paid off, it seems like horrendously bad financial advice to advice someone to sell it and get something they’ll sink a ton of cash into, especially when the cost of an unexpected repair could be the difference between having enough money for groceries or medication and going without.

“So don’t have a car!” Fiscal Conservative on Facebook inevitably says next. “Take the bus!”

And we’re back to assumptions. Not everyone has access to public transportation–maybe they live somewhere without a reliable system, or physically can’t access it due to a disability (look at that intersectionality right there). Maybe the schedule isn’t compatible with their work or childcare schedule. Bottom line: you do not know their circumstancesDo not assume you do.

But even putting aside the financial aspects of this whole “if you have nice things, you’re not really poor!” narrative, imagine how incredibly invalidating of a person’s experience of poverty it must be to hear those words. Or don’t bother imagining: just read some of these first-hand accounts. Highlights include:

“When I was a child on welfare, eating rotten lunch meat, walking in shoes with cardboard in the bottoms to cover the holes, I had an extensive collection of My Little Ponies.  Not “one or two horses”; over three hundred, all told, and almost all the major playsets.  Maybe, oh, 10% of the total came from my mother, over the course of the eight years I spent collecting and living with her.  The rest were gifts from family members who didn’t know about our situation, but knew from Gramma’s chatty “everything is fine” letters that I loved My Little Pony.  They were from the charity groups that let you sign up and specify what your children wanted for Christmas.  They were from me saving every penny I found on the street.  They were from favorite teachers who knew how poor we were, who wanted me to have birthday happiness.  We’re talking thousands of dollars of plastic horses, almost none of which took a dime from Mom’s budget.  And the ones that did?  She was a mother trying not to break her daughter’s heart.

Every time someone yelled at us because poor people shouldn’t have nice things, we all died a little inside, and I clutched my horses even harder.  I needed something bright and beautiful in the world, to make up for the roaches in the walls and the mold growing on the butter.

Unless you’re someone’s accountant, you don’t know where they’re putting their money, and it’s not your place to judge.”

“We were eating only donated Panera bread, rice, and turnips. My father was sneaking to the various blood banks in town to sell his plasma at twice the rate they allow. My mother was dying due to not having her medicine, which cost well over $1,200 a month after insurance.
My autistic baby brother wanted to do something nice for me.
He worked for months making custom art pieces to sell. He worked up courage despite crippling social anxiety and speech problems to ask the neighbors if he could do chores for them to earn more money – raking the yard, helping clean their house, walking their dogs.
For nine months he carefully hoarded his money in a jar in his bedroom. He counted it every single night and compared it to the cost of what he wanted to get for me for Christmas.
Finally he had enough. He bought me a DS Lite and a pokemon game.
He was so happy.”

When we perpetuate a narrative that people must live with nothing in order to be deserving of aid, we invalidate the experiences of people who do their best to cling to joy in horrendous circumstances. We make children feel like they’re wrong for keeping a toy. We make parents feel sick for buying Christmas or Chanukah presents, while simultaneously building up the narrative that to be poor is to have nothing, and to have anything is to not be poor enough to deserve help.

All of this goes back to the narrative that appearances are everything. If you look online, you can find dozens of charities that work to give low-income job applicants haircuts, business wear, etc in order to succeed on a job interview. So much emphasis is placed on not looking poor in order to access essentials such as employment or healthcare, and yet we criticize those who don’t look poor enough to need public help: if you can afford a manicure, you shouldn’t need TANF, but good luck getting acing a job interview with dirt under your fingernails.

“I do not know how much my mother spent on her camel colored cape or knee-high boots but I know that whatever she paid it returned in hard-to-measure dividends. How do you put a price on the double-take of a clerk at the welfare office who decides you might not be like those other trifling women in the waiting room and provides an extra bit of information about completing a form that you would not have known to ask about? What is the retail value of a school principal who defers a bit more to your child because your mother’s presentation of self signals that she might unleash the bureaucratic savvy of middle class parents to advocate for her child? I don’t know the price of these critical engagements with organizations and gatekeepers relative to our poverty when I was growing up. But, I am living proof of its investment yield.”

(The Logic of Stupid Poor People)

The point of all of this is that we have created a narrative that simultaneously disdains anything that implies poverty while rejecting those who do not fit into the framework of what poverty “should” look like. I know a PhD who works as a barista and is swimming in loan debt while projecting an air of suave yuppiness, but she struggles every time friends ask her to go out to dinner because she knows she can’t afford it but doesn’t want them to know. I have friends who give each other manicures and find designer-label bags and clothes at thift stores to avoid being seen as poor (and therefore lazy, unmotivated, and a handful of other racially and economically coded adjectives) when they apply for jobs, but are still called welfare queens when they go from a job interview to a social service office.

(A sidebar, here: Lest anyone interpret this as a nice way of saying “not everyone is poor because they made shitty decisions, so you should be nice to all poor people!”, let me be very clear: I am saying this because it does not matter why someone is living in poverty. Maybe they did make shitty decisions. Maybe they did spend their money on an iPhone instead of saving it for an emergency fund. It doesn’t matter. Bad decisions do not invalidate people as human beings and should not give someone else the authority to deny people access to basic essentials like food, shelter, and health care. This is the 21st century. Move past your concept of the deserving and undeserving poor.)

As I talked about in my last post, keeping up appearances while struggling with social expectations when you don’t fit the mold of what someone thinks you “should” look or act like is a balancing act. Having an invisible disability has turned every day into an uncomfortable conversation. How much do you tell people about the realities of what you’re feeling? How often can you call someone on inappropriate comments or ableist language without becoming “that” friend or coworker? Will I stop being invited out? Will my friends still want to hang out if they’re worried about “accommodating” me? On the other hand, can I afford the recovery time if I push myself too hard, ignore my limits, do something unhealthy or unsafe for my body’s abilities? It’s enough to make you feel like you’re drowning.

 

The one up side to my illness is this: it has made me more understanding, more empathic, and more attuned to the realities of just how exhausting it is to keep up appearances. For me to become the sort of social worker who invalidates a client’s physical or mental abilities, financial state, or level of honesty based on their appearance, their performance of ability, or their possessions would be deeply hypocritical, and in some ways, I’m grateful to my disability for deepening my ability to look past a person’s presentation and to try and understand what their needs are while treating them like a real person.

Because in social work, it is so easy to become judgmental. We hear tiny things every day that add up to a professional mindset that is so inherently in contrast to what our code of ethics asks of us: to respect the dignity and worth of each person, to practice cultural competence, to allow for self-determination. And when we do that, we’re not just betraying our profession, we’re betraying our clients.

As difficult as it is–and I know it’s hard, I know, because I’ve been doing this professionally for less than a year and I’ve already seen and heard things that make me want to crawl under my bed and never come out ever again–we need to remember that we are in this profession to be advocates. Nine times out of ten, our clients are the people who have never had someone support them, who have been invalidated and disempowered and disenfranchised over and over again. Our clients are the people who have had disadvantage written on their bodies throughout their lives in the form of race, and size, and ability, and health. And as frustrating as it can be to watch the cycle of abuse continue, to see decisions made that might not be the most objectively advisable decisions, to see the gentle (or not-so-gentle) suggestions you make be ignored time and time again, it is still our job to support our clients to the extent of our abilities and to remember that they are people who are deserving of dignity and respect.

For younger/newer professionals (what up, cohort!) one of the hardest parts of this is challenging those who are older and more experienced (and therefore, more jaded, burnt out, set in their ways, etc) on their perceptions of their clients or client base. The first time I gently suggested to a family member that hey, maybe capitalism isn’t a great system, I was treated to a lovely rant about economics (how nice), personal responsibility (oh, glee) and those good ol’ bootstraps (how exactly are you supposed to pull yourself up by your bootstraps when you don’t have boots?). It was a very uncomfortable car ride. And as good as I felt about systematically breaking down every single one of this person’s arguments as mega super classist (because I am a boss), it was awkward, uncomfortable, and did not leave me feeling like a happy camper.

And the crappy part is, I’m going to have to do it over. And over. And over again.

But the crappiness of advocating for those living in poverty is nothing compared to the crappiness of actually living in poverty, just like advocating for those with disabilities is nothing compared to actually having a disability. And as exhausting and secondary trauma-inducing as it is, I am proud to be a member of a profession that was built around building people up instead of knocking them down, and I will continue to do so as long as I can. And when the burnout does start happening–which I know it will, probably sooner rather than later just given the population that I work with–I will remember the people who looked past my appearance of functioning and understood my limits, who understood that my presentation and my ability are not always synonymous, and I will try, for at least one more day at a time, to do the same for my clients.

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