Keeping Up Appearances

 A really insightful discussion this week, jumping off of this article, got me thinking. Appearances matter in ways that are more complex than most people stop and take time to consider, but not just the way we present ourselves, other signals like language diction, vocabulary, and body language also cue to people our financial and social status and this matters. 

It shouldn't, but it does.  It matters when we shop. At the grocery store, if I don't dress up from my usual jeans and t-shirt, I always get asked if I am using food stamps. I have even been on the receiving end of snide comments about using food stamps even though I never have.

I have been ignored in shops because I look poor. I was even asked to leave once. I get that I look young. I look poor. I do not look like my place in society- which is an highly educated, white woman in her 30's, married, with a stable 2 income household. I have the privilege of using my appearance to my advantage and I can easily code switch between two worlds. That is the true privilege of social mobility.

This I can deal with. It annoys me. It worries me. Still, it is not life or death.

When does it matter though? It matters to folks who do not have the ability or have even thought about the disadvantage of not being able to move between or present themselves a certain way.

It matters at the hospital.

It matters in the emergency room. It matters in the NICU. It matters when talking to specialists.  I have had a few doctors and nurses who it doesn't matter to, but they are the exception. I make a point of having my iPhone out, dropping references to my job (college professor) and my husband's job and I see them flip the file and double check the section that has that data. I am careful about my grammar. I choose my shoes carefully too.  I bring a binder and any article I reference I keep a copy in there, I also have PDF's on my Google drive and offer to email them if need be. I am sure to cite studies from resources I know that are taken seriously by the medical community, CDC instead of NaturalNews for example. I wear expensive earrings.

Do these things actually matter? In my own experience, yes. If I am rushed or tired and forget this whole production matters, things do not go as well. We don't follow recommendations by our doctors blindly without questioning and many are not used to that. I have to be prepared to meet their level of intellectual code and clearly I can. I have that privilege. What happens to folks who do not? The answer gets more complicated. Part of me fosters a certain kind of fear. Many of the choices we make for our family are the same things that people get their children taken from them for- selective vaccinating, refusing formula for a failure to thrive baby, co-sleeping, spreading out well checks- just a few examples. Somehow I managed to gain the trust of our doctors and caregivers that I am capable of making the decisions without harming my children while a 17 year old, near homeless mother loses her children. I can't help but wonder if my social privilege of education and knowing when certain presentation of things matter because they do actually matter.

It is one thing for these things to make a difference regarding how a grocery clerk and customer treat us, it is a life or death game when seeking medical care.

Another incident sticks out in my mind. We were going over test results with a specialist. He's a great doctor and was very thorough and respectful, willing to work with us. However he ordered a long list of tests just to cover all the bases. One of those tests was the FISH test that diagnosed Isaac with 22q, but there were 15 other tests he ran too. I was fine with that. We followed up. We followed up at his request several times. Each time, blood work and physical exam showed all good things, progress, not more complications. Each visit was $450 out of our pocket. When he asked for another follow up, I explained that to him. I also had concerns about how we were billed for the CAT scan (a $5000 facility fee was tacked on and I wanted to know why and what this was for). He was surprised at the fee, said it had to be a mistake but he was also surprised because he thought we were on Medicaid and Title 19. He said it was not actually necessary for us to come back again and signed off on Isaac's care. 

First, I had the know how to navigate the bitterly cold and horrible waters of hospital billing to ask these questions. I had the privilege of being able to read the bill, the time to spend on hold, and the language and communication skills to make progress. Eventually, the bill was lowered to $1,200 but it took taking to the level of legal action to get them to actually prove to me that the billing was legitimate. That is a huge difference and mistakes and bills like those can push families into financial ruin and poverty.

So let's not just shrug off the value of this privilege. Let's not say it doesn't matter. Instead how about we coach other families and advocate for each other. It is a code that we need to be able to navigate and switch back and forth from if we want the best possible care for our kids. We know that being jerks and yelling and swearing at the medical professionals will knock our actual care and experience down a whole lot, but it is more than attitude that matters.

So I present to you a list of things you can do when you can do them. So much of me, especially the feminist in me, wishes these things didn't matter, but they do and we can use them as tools.

1) Nicer shoes. Start there. Get a special pair just for doctor's appointments. (Good for germ management too, by the way.)
2) Tie your hair back into a bun. This is easy, even if you don't have time to groom your hair. I have a special clip just for this. I can do it in the car at one stop light or in the ER waiting to see the first doc after triage.
3) a light coloured lipstick or gloss. Not bright, not garish, but something.
4) A cardigan or sweater you can pull on over whatever you are wearing. Expensive looking earrings. I keep a pair in my purse just for this. This makes jeans and a T-shirt transform into something just enough classy that it makes the difference.
5) Speak carefully, make eye contact. Do not use contractions like don't, can't, y'all, ain't. Don't get chatty. Don't ramble. Speak carefully and softly. Make them listen to you when you speak and make it count.
6) Take notes. Ask questions. Ask them to repeat things and define words.
7) Ask for copies of everything. Keep it in an organised binder.
8) Stay calm and sweet. This doesn't mean play dumb, it means stay cordial. Check your sarcasm at the door. Losing your temper and storming out needs to be a very last resort. Even if you never ever come back or switch doctors or file a complaint with the state board, causing a scene looks bad on you not them. Last resort only.
9) If you know you don't do this well, get an advocate to go with you. Other special needs moms are fantastic as a resource. Choose someone who can play the game and get taken seriously.
10) Cry in the car. Cry at home. Never cry on the phone or in front of them. Unless your kid just survived a code or some other major thing has happened, then totally break down on the floor, fall to your knees and sob. Crying over being frustrated over billing or rude receptionists needs to wait.

I wish these things didn't matter. I wish they didn't matter more for poor women or families of colour and ethnic background. Clearly dads don't have to wear lipstick. These are things I do because I have experienced better care for my special needs child when I did.

What about you? Do you have any experiences to backup or argue this phenomenon? Tell me you think it is bullshit, tell me you agree. Let's get some dialogue going, y'all.