Does my child’s body make you uncomfortable?

I’m reading a book of essays called Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality. I’m reading it because my son, Monkey, was born with an anatomical difference called a lymphatic malformation (LM). These are most commonly found on the face and neck but can also affect limbs and even internal organs. His is on his chest wall. It is large (he had to be delivered by c-section) and visibly changes the shape of his body.

Through Monkey’s first year, I felt very conflicted about dressing him. I felt I had almost a moral obligation to dress him in concealing clothes, yet friends and relatives kept giving us onesies and other tight-fitting shirts that made his difference more obvious. I’m not sure whether I felt the obligation was to him (despite his lack of awareness) or to other people.

When he was around a year old, his LM, which until that had always grown proportionally to him, grew more rapidly and became firm and painful. It was very obvious and no longer made much of a difference what shirt I put him in. Then there was the day at library story-time when he pulled up his shirt to show another toddler his belly button, giving a full view of his torso in the process. I saw one mom staring and I’m sure she was thinking “What the bleep is that?” I kind of chuckled to myself. I thought, if Monkey has no self-consciousness about it, what right do I have to be “self”-conscious about it? His body is not inappropriate. Nor do I have an obligation to protect other adults from the discomfort of seeing his difference. So I relaxed and started putting him in whatever outfit seemed cute and comfortable.

Truth be told, I’m so used to his body that I find myself searching other toddlers for that familiar shape and feeling like they are missing something.

At the point that his LM began to enlarge more rapidly, we had not done any treatments. He’d seen a surgeon at birth who wanted to remove it when he was a few months old, but we were uncomfortable with the surgeon and sought a second opinion at the university hospital. The surgeon there referred us to an interdisciplinary vascular malformations clinic, which decided that he should be treated with sclerotherapy by an interventional radiologist. The radiologist wanted to wait and see what happened. So that is what we did. After his first birthday, when the LM got so large that it affected his mobility and seemed to be causing him pain that disrupted his sleep, we decided to begin sclerotherapy treatments.

Unlike surgery, the sclerotherapy does not actually remove the abnormal tissue. Instead, it scars it down so that the cysts cannot refill with fluid. Neither treatment is a cure. Recurrence after surgery is common, especially since it’s often impossible to remove all of the tissue without damaging nerves and veins. I found myself having to explain this over and over to relatives, acquaintances, therapists, and doctors, as everyone was constantly asking me “When are you going to get that taken care of? When are you going to fix it?” They assumed it was something that could simply be removed, like a mole, and be done with. Furthermore, after he responded poorly to his first treatment and his second treatment caused swelling and painful blood clots, our decisions to use sclerotherapy instead of surgery were questioned by these same people. “Why does he have to have so many treatments? Are you sure your doctor knows what she’s doing? Wouldn’t it be easier to do surgery?” And then I had to explain that no, surgery carries greater risks, including higher risk of infection, bleeding, nerve damage, and scarring. Sometimes lymph fluid will chronically leak through the scar for years after surgery.

I was frustrated at the implication that neither I nor my son’s doctor were making the right decisions for him. But even more than that, I felt, and continue to feel, a social pressure to make his anatomical difference go away. People who have no personal investment in my son’s health ask me “Are they going to remove that? When?” as if it were important to them. My response to this, influenced by reading disabled activists and theorists, is to examine my own motivations for treating his condition at all.

Cassandra Aspinall, a social worker with a cleft lip who counsels parents of children with craniofacial differences, writes, “[Families] deserve a chance to try to distinguish between operations that satisfy the child’s desire to bring her appearance more in line with how she sees herself and operations that bring her appearance more in line with how others think she ought to see herself. […] it’s important to start asking some simple questioins like, What is the problem that is being treated? Whose problem is it? and, Who will benefit?” (“Do I make you uncomfortable?”, Surgically Shaping Children, pp. 15-16).

At this point, my son’s three sclerotherapy treatments have been motivated by matters of mobility and pain. After the swelling from the second treatment receded, his LM finally started to shrink and soften. He walked less lopsided, started sleeping better and complaining less of pain. Ultrasound confirmed some of the cysts are breaking down. We are still waiting for swelling and clots from the third treatment to resolve, but hopeful that the positive trend will continue. And if it does, then what will be left will be mainly a cosmetic issue.

This is where I will have to draw the line with people who continue to ask, “When are they going to remove it? When will it be fixed?” Because at that point, the problem they want me to fix will be their own. And I’m not going to subject my two-year-old to another bout of general anesthesia, Jackson-Pratt drains, bandages, restrictions, and pain, to fix some adult’s problem with his appearance. I would much rather put my energy into changing the attitudes of those around him.

Advertisements

The amazing disappearing blog

I set this blog to private for a couple of days. Sometimes when my mood dips, I get mildly paranoid and part of my response to that is to stop checking mail or email and change my privacy settings online. It’s a way to manage anxiety. Now I feel mostly normal again so I’m setting it back to public, but I thought I’d make a note about it because it will probably happen again in the future. So if you start reading this blog and then one day show up to find that it’s set to private, don’t worry; in all likelihood it’s temporary. The blog will magically reappear as soon as my mood balances.

How much should activists accommodate prejudice?

There’s a PSA video circulating in which famous actress Olivia Wilde takes the physical place of a young woman with Down Syndrome, whose voice we hear. The end of the video shows AnnaRose, the woman with Down Syndrome, looking in the mirror and seeing Olivia Wilde, saying this is how she sees herself. In other words, she sees herself as a nondisabled neurotypical person. And so, in this video, do we, because we are not allowed to see her any other way. Except at the very end, we are not allowed to see her.

Disability activists such as Emily Ladau, David Perry, Dominick Evans, Sarah Levis, Richard Godden, and others, have complained that the video erases AnnaRose from her own story, erases her disability, and is therefore not genuinely accepting of disability. As usual, people outside the disability rights community are responding by slamming the “PC police” who are “offended by every little thing” and wondering how anyone could not like this video that is so “beautiful,” “moving,” and “poignant.”

Other commenters have argued that the audience the video is directed at – namely, those who haven’t yet figured out that people with Down Syndrome are actually people – won’t watch a video if it portrays a disabled person as disabled. These commenters argue that a conventionally attractive celebrity is the only way to get ignorant ableists to watch the less-than-2-minute film to the end and digest its message. Sadly, they may be right. But is catering to ableism the best way to change perceptions?

The media tends to sanitize its portrayals of disability. Two examples that come readily to mind are The Brooke Ellison Story and Extraordinary Measures. In these movies, both based on true stories, the disabled characters are basically portrayed as models with perfect speech who just happen to be in wheelchairs and have trachs. In real life, Brooke Ellison’s trach affects her voice, and she is partly reclined in her wheelchair (the movie made her sit perfectly upright). Megan and Patrick Crowley, the children inĀ Extraordinary Measures, have Pompe disease which affects muscle tone in the face; there’s no way they could look or talk like that in the advanced stages.

The same argument can be made for these films that is being made for the Olivia Wilde video: how many people will watch a movie with a disabled protagonist that really looks disabled? (My Left Foot, anyone? Was that just a fluke?) The PSA video is worse, though, because it erases everything related to disability and says to disabled people: “This is how you should see yourself, without disability. If you see yourself like this, we will accept you.”

Questions:

To what extent should activists have to accommodate the prejudices of their audience?

What if an awareness ad was targeted towards racists who would only watch it if the black narrator was portrayed by a white person in blackface? Is it acceptable to do the ad that way?

Do portrayals that erase aspects of disability (such as distinctive appearance or speech) prepare a nondisabled person for an encounter with an actually disabled one who doesn’t look like a runway model? Will the empathy engendered by the censored portrayal carry over to the reality? Or is uncensored exposure to real people who are different from us the best way to understand that they are people like us, neither better nor worse?

Is the goal to be seen as nondisabled? Or is the goal to be seen, included, and accepted as a person with a disability?

People who object to the Wilde video are not “missing the point.” We understand what the filmmakers were trying to do. But there are serious questions about the way they did it, and I wish more people would take those questions seriously.

Finally, here’s a link to an alternative version of the video from a woman with Down Syndrome: How do you see me?

Testing 1 2 3

Welcome to my blog. At the time of writing this, I’m a young stay-at-home mom who spends a lot of time thinking about messed up the world is and how it could be better. I’ve decided to ramble about parenting, disability, and political theory here, so that my Facebook friends don’t kill me.

I will talk about my almost-two-year-old son and his medical conditions, but I’m very conscious of the need to protect his privacy. For that reason, I won’t post any pictures of him (even though he is freaking adorable) since he’s too young to give permission. I’ll refer to him by the fake internet name “Monkey”.

I’m not planning to get much into current events here, not because I don’t follow or am not interested in current events and politics, but because I spend enough time talking about all that on Facebook etc. This is my place to talk theory.

“Anarchism” in my vocabulary refers to the political philosophy traditionally called anarchism, which is a type of anti-statist socialism. There are various other terms, eg. libertarian communism, some of which have slightly different meanings. It has nothing to do with unregulated capitalism or guns or getting to do whatever you want.

I’ll abruptly end here since I need to go bathe my child. My next post will probably be more organized.