Disability: When Context Matters

[Content Note: Infertility, Pain Management, Surgery, Religious Proselytization]

Ana's Note: This piece was composed in January 2012 and was inspired by Froborr's excellent post The Problem of Proselytizing. This piece is also an unintentional two-partner piece about ableism, with the second piece to run 3/22/2012. This is the Kindness & Cookies piece; the second part is the Firebrand piece. Never let it be said that I am consistent.

I went to see my scoliosis specialist this weekend.

I haven't been to see him since 2010. The long delay between that visit and this one had special significance: during that time, I was trying -- and failing -- to get pregnant. This visit represented the culmination of two very painful realities. One, my persistent back pain is getting worse. Two, I and my Husband will not be having a child together.

My scoliosis specialist knew that I was trying to conceive. When I last saw him, he recommended that I get my pregnancy over with before undergoing invasive spinal surgery, and since conception is no longer part of my plans, I needed to give him a quick update so we could move forward. Because I didn't want to dwell on my infertility, I quickly outlined the basics: I had two failed IVF attempts last year, in each case all the embryos stopped growing and came back from the lab with multiple genetic abnormalities, and the diagnosis is that Husband and I are individually healthy but genetically incompatible with one another. And then my scoliosis specialist asked the question that everyone always asks, the question that keeps me from sharing this story more often with people:

Have you considered using donor sperm?

Every time I hear this from a well-meaning stranger, I have to fight a powerful urge to not make the Home Alone face and say, "Donor sperm?! Is that a thing now?? Do they do that??" I mean, you can honestly see how I could have missed that, despite it being a plot element in at least a dozen popular mainstream movies off the top of my head, and what with my having a dedicated IVF doctor who has been featured in at least a couple national magazines as pretty hot stuff in the fertility doctor community. So it was pretty dang rude of my fertility doctor to not have even mentioned donor sperm as a possibility to us. Thank you for bringing this option up for my consideration, Perfect Stranger!

You see, I have a whole little facetious "mini rant" prepared in my head.

I don't say all this, of course, because to do so would be considered hostile. I have a little mixture of polite pre-packaged explanations about my back and my health and it-not-being-meant-to-be and people nod and smile and we eventually move past the question. Their curiosity is satisfied, they've solved for X in the equation of Husband and I being genetically incompatible, and I choke back my tears. Again.

The "have you considered" question -- sperm donor? egg donor? adoption? -- is personally triggering for me because the act of considering those choices and making my decision with my Husband was one of the most painful experiences of my life. The question, though I understand that it is well-meaning and well-intended, takes me back to that moment every time, that moment when I had to make a decision about my future, a decision that gave me peace and yet pain.

I want to stress that I don't blame people for asking the question. Nine times out of ten, I believe they want to help me, that they're trying to understand me. They ask because on one level or another they care about me. But that doesn't change the fact that they're asking me to share something intensely personal with them, that they're putting me in a position where I'm supposed to bare my soul under the guise of a question of intellectual curiosity: Have I considered all the alternatives? The burden falls on me to give them the answers they need while still preserving my emotional privacy.

But a part of me resents that. Each time I want to shake them and say, How can you ask me this? How can you think I wouldn't have researched this exhaustively? How can you pretend that you can go from never-having-thought-about-this-before to total-expert in the space of ten seconds? How can you not realize that this is something intensely painful and private that I might not want to share? How? And then I feel guilty.

I feel guilty because I know that the problem is not the question itself. At least once a month, my Mother says to me, "Tell me again why you're not using a donor?", and I don't get upset at her. I don't get upset at her, because I understand why she asks. My infertility has hurt my Mother as deeply and as genuinely as it has me. When she asks me that question, she's not asking to satisfy an idle curiosity. She's not asking me to bare my soul to present my decision for her judgment. She's not asking me to change my life based on her opinion or the "new information" she's supposedly presenting. She's not a blank wall demanding that I educate her or modify my life in response. For her, the question is just an expression of her pain. It's my cue to explain to her all over again a decision that she already understands and agrees with. The process is therapy for her -- for both of us -- and we cry and nod and hug and agree that the whole situation sucks but that we made the best choice.

It's the same question, this question that my Mother asks and that the Perfect Stranger asks. And yet it's an entirely different question based on the context.

What is the difference between someone proselytizing at me and someone sharing a religious viewpoint with me? What is the difference between advice dispensed by privileged strangers and advice shared between close friends and family? My personal opinion, informed by this recent interaction with my doctor, is that the difference is one of context. Context makes the difference between someone thinking they know what's best for me and someone hoping to understand me better. Context makes the difference between demanding a change, explanation, or justification versus accepting me with respect, courtesy, and kindness. Context defines the meaning of these words:

Have you considered using donor sperm?

Six words. They mean something completely different, depending on the speaker, depending on their relationship to me, depending on their location, depending on the tone of voice, the accompanying body language. From my Mother, it's a plea for therapy, a need to address the pain we both feel and reaffirm that this decision was the best one. From my closest girl friend, it's a genuine attempt to understand my situation and to empathize with me. From my scoliosis specialist, it's an attempt to turn my problem into something academic that he can solve. And when the question comes from a Perfect Stranger, the issue becomes more complicated.

When a Perfect Stranger asks me whether or not I've considered using donor sperm or measuring my thetan levels or having my thyroid levels checked or any number of highly personal things, there's a lot of conveyed presumptions packed into that question that -- lacking context -- I cannot immediately and easily unpack. Do they honestly not think I've considered these things before? Do they expect that I have considered them, but are asking me if I have anyway as a sort of roundabout way of satisfying their own curiosity? What, essentially, does the question mean? And how should I respond?

Have you considered...? posits the potential that I haven't really through through something that is integral to my life. For most deeply personal issues, I've invested hundreds of hours of thought, whether the issue is my religion, my political identification, or my reproductive choices. I don't know how to convey to a Perfect Stranger that the idea that they can brush up on my backstory in a matter of minutes, solve my problems with a few quickly-conceived pearls of wisdom, and then ride off into the sunset leaving my world a better place is insulting. It implies that I'm foolish, that I lack introspection. It implies they know what I need better than I do.

Have you considered...? suggests that it is acceptable to pretend that I haven't thought through important decisions in order to prompt me to bare my soul to satisfy a stranger's curiosity. The framing buys into the narrative that the Privileged are owed explanations, that they deserve to be presented alternative viewpoints on demand for their careful inspection. The question acts as a sort of Trojan Horse for smuggling in the real question -- Why aren't you...? -- and it leaves me without an escape clause if the question is too painful to answer.

Have you considered...? questions just how much expertise I have over my life, my decisions, my opinions. The query suggests that I've put less thought into my life than the person posing the question. I've spent my entire life considering in depth how I should live, what choices I should make, what I believe. I've tweaked and modified almost every aspect of my life. I have invested countless hours on the question of How Does Ana Want To Live Her Life. I easily meet the 10,000 Hour Rule. This is a topic on which I should be an undisputed expert and yet, my expertise is in dispute. I can't count how many times in the last month I've been asked by a Perfect Stranger whether I've considered living my life completely differently. Have I considered changing my religion? My political party? My feminist identification? Have I considered infertility alternatives? Have I considered any number of pain management techniques, including (and this is a very popular one) Tylenol?  

Have you considered...? YES.

Yes, I have considered all these things. In depth, over great periods of time. The choices that I've made as a result of that consideration are largely a good fit for me, even if that isn't readily apparent to a Perfect Stranger. And I am even willing to discuss my choices and my beliefs and my decisions in detail.  

But it's my right to determine in which contexts I want to consent to that type of discussion.

Whenever I'm asked a personal question, I have to make a judgment call. I have to gauge whether a question about my infertility is one meant to learn more about me or one meant to try to influence my decision. I have to judge whether a question about my religion is one meant to understand a different worldview or one attempting to convert me to a different religion. I have to decide whether a question about my pain medications of choice is one meant to genuinely empathize with me or one meant to play Armchair Physician so they can dangle an Obviously Simply Solution to my complex problems. I have to make these judgment calls because I have a finite number of spoons in a day and I've no interest in engaging with questions asked in Bad Faith.

How do we separate the Good Faith questions from the Bad Faith ones? For me, the best I can do is look at the context. What kind of relationship do I have with this person? How was the question framed? Does their tone, their language, their body language seem to convey respect for my situation? Are they genuinely trying to listen to me, or are they just interested in informing me of their advice? Advice isn't the same regardless of the source. Recommendations, whether they be ones of medication or religion, are not neutral or divorced of context. There is a difference between my Mother telling me that Tramadol worked for her, and a Perfect Stranger asking me if I haven't considered using Tylenol. There is a difference between hapax explaining to me how her religion approaches a specific issue, and a Perfect Stranger asking me if I haven't considered giving my life to Jesus.

I don't want prying questions or personal judgments or intrusive advice from Perfect Strangers. I don't honestly know enough about them to know if their experiences are even remotely relevant to my situation, and I know they don't know enough about me to be able to gauge my situation and determine what would be a good fit for me. "Ana, you should totally try Sulfasalazin," would be very bad advice indeed for me, given that I'm allergic to sulfa drugs. "Ana, have you considered being an atheist?" would be very presumptuous advice to give me, as that's a very personal decision that I think is best left to myself.

Have you considered...? Why don't you try...? Don't you think you should...? are all questions that, when coming from someone I don't know and don't trust, are invasive. They are questions that demand explanations, require justifications, and urge me to make changes to my life on the strength of a stranger's opinions.

And to me, that is the difference between proselytization and sharing, the difference between victim-blaming advice and a conversation between a loving mother and daughter. The same words in different contexts makes the exchange fundamentally different. When my mother or my friend or my lover tell me what atheism has done for them, or what wonders Tramadol has worked in their life, or how being a Libertarian has enriched their existence, it's an exchange of feelings between two people in a relationship, not a sales pitch. When a stranger says the same things, it's a a shared intimacy that I don't want and which is being pushed on me against my will.

And when a stranger questions me on why I don't live my life the way they expect me to, I lack the context to know for sure that it's not a judgment on me, a demand that I either conform or justify why I won't. I hope each time that's not the case, but it too often feels like it is.

The words are the same but the context changes everything.