Acceptance & Abilities

This topic is something I have struggled with since Eli was a few months old, but I haven’t done it justice in writing because I’ve had a difficult time finding the right words to express myself to my satisfaction. So once again please excuse my terrible stream-of-consciousness writing. I wish I could edit myself, but I am who I am! I actually think there are two facets to this topic that are somewhat intertwined. First, why has it been such a struggle for me to accept and rejoice in Eli’s diagnosis? And second, what does his diagnosis even MEAN in terms of ability and severity.

I’ve seen the book “Far From the Tree” by Andrew Solomon recommended by a few people over the past couple years, but I kept putting off buying an entire book when only one chapter (the chapter on dwarfism) would be relevant to me. I was able to borrow a free e-book from Open Library, and now I regret that I didn’t buy the book sooner, and I’ll probably purchase my own copy soon, just to have. I want to start by sharing a few quotes from this book about dwarfism, and how dwarfs are viewed by society at large.

• To say that a person’s ethnicity or religion had overwhelmed, even temporarily, one’s ability to appreciate his other personal characteristics would seem bigoted. But dwarfism has been the exception to these social rules. According to Betty Adelson, author of The Lives of Dwarfs and Dwarfism, “The only permissible prejudice in PC America is against dwarfs.”
• Mary D’Alton, chair of Columbia University’s Department of Ob/Gyn and a leader in the field of high-risk pregnancy, told me that dwarfism is the most difficult diagnosis to communicate to expectant parents.
• Woody Allen once quipped that “dwarf” is one of the four funniest words in the English language. To be in your very essence perceived as comical is a significant burden.
• A sighted woman who marries a blind man inspires admiration; an average-size woman who marries a dwarf inspires suspicion that she has a fetish. Dwarfs still appear in freak shows; in dwarf-tossing competitions; and in pornography, where a whole subgenre featuring dwarf sex exploits an objectifying voyeurism. This is testimony to a callousness beyond that shown to almost any other disabled group.

I’ve mentioned this before, but when Will and I left our perinatal appointment after being told our child would probably have dwarfism, we got in the car and the first thing I said (or wailed, rather) was, “People are going to be so mean to him.” And it’s true. People are going to be mean to Eli. I think all the quotes above exhibit the kind of meanness I was worried about. Peter Dinklage has said before that dwarfism is one of the “last bastions of acceptable prejudice.” And I believe my struggle with acceptance hinges on this huge aspect of going through life with dwarfism.

I had plenty of friends when I was younger, I wasn’t an outcast, but I do vividly remember being bullied by three girls in particular, and the huge negative impact they had on me. I was a painfully shy child (shout out to the best GT teacher ever Dawn Krause for bringing me out of my shell) who moved states in junior high, a time when kids are notoriously mean to each other. I remember how tortured I felt by those three girls and in my mind I’m already projecting those feelings and more onto Eli’s future, because I know there will be a day he comes home and tells me someone called him a midget or a baby, and I am already devastated for him…but there is not one single thing I can do to stop it from happening. There is no escaping dwarfism. There’s no hiding it. A deaf person can walk around without any attention being paid to them. A blind person can lay on a beach and no one will realize they are blind. A paraplegic can sit in a restaurant and blend in to their surroundings. But a dwarf is stared at wherever they go. They are an oddity and a rarity and a curiosity and people just can’t help themselves. If it makes you sad to read this truth, imagine how heartbreaking it is for me to type it. I would do anything for society to be different in this regard. I know it won’t be all bad. Our friends and family have already proved that Eli will have many wonderful people in his life who love him for who he is, who think his height is irrelevant. But I also know there will come a day when he isn’t comforted by me calling him my 1 in 120 million boy, or when he just wants to go to the movies or the mall without being stared at.

One other quote I read in this book really stuck with me, and it wasn’t even in the dwarfism chapter. The mother of a child with Down Syndrome, who also worked with early intervention for most of her career, said, “The parents may never accept what happened to them and yet accept their child. They’re two separate things, the parental loss, and the actual person they end up loving.” This really resonated with me, because I think at the heart of it, when you have trouble accepting a diagnosis, the main thing you feel is guilt. Guilt because you think people see your struggle as a struggle to accept your CHILD, and that IS how some people (wrongly) perceive it, but it’s not true. I love Eli more than I can even put into words. I adore every single part of him, including his short limbs; I think he is beautiful and strong and brave and amazing, and because I think he is all those things, I want him to have the most wonderful life, and I want people to love and appreciate him like he deserves, and I worry that his diagnosis is going to impede that love and appreciation. I feel like this is what I’ve been trying to explain for almost two years, and I’ve finally found the right words.

The other facet of this topic revolves around Eli’s abilities, and how severe his so-called “limitations” are. I usually try to emphasize that Eli is just like any other toddler and should be treated as such, and that’s true. But that doesn’t mean our experience of parenting a child with dwarfism is even close to someone who is parenting a truly typical child. This is another thought I’ve been trying to articulate for a long time, and here are two quotes from the book that helped me fully realize my feelings on the subject:

• Research indicates that short-statured people generally outscore their parents on measures of overall contentedness, which is to say that parenting a dwarf seems to be emotionally harder than being a dwarf.
• We still fit people into the binary of disabled or nondisabled; we grant those who are officially disabled social assistance, legal protections, and special parking spaces. It’s difficult, though to delineate where disability sets in. A man who is five foot six might prefer to be six feet tall but is not disabled. A man who is four feet tall faces significant challenges. Dwarfism is recognized under the ADA…but no law requires supermarkets to provide a means to retrieve merchandise from high shelves. Legislation does not consistently mandate that gas pumps or cash machines be installed at a height that makes them accessible to little people. The federal government will not pay for adaptive equipment for people who wish to drive but are disabled by virtue of their short stature.

I struggle with this aspect a lot, especially when I’m around new people, and I’ve been around new people a lot lately since starting my new job. When Eli comes up, it now feels natural to mention his dwarfism (which is a relief…I think back to a year ago when I agonized over how to approach talking about his diagnosis with coworkers or acquaintances), but discussing it in detail makes me almost feel like we live in disability purgatory. I mean, what do I tell people? Is he disabled? Does he have special needs? Does he have any limitations? When he is older he will require constant accommodation, while at the same time not suffering from any particular limitation. By ADA standards he does have a disability. But he’s not “disabled” in a way that impacts his daily life. Does he have special needs? I mean…not in the sense most people imagine “special needs” children. He is neurotypical and much closer to on track with his gross and fine motor skills than he was six months ago. He lives a very normal life. He wakes up, goes to his nanny, comes home, eats dinner, plays, goes to bed, and repeats it all the next day. He’s basically “normal” (whatever that means)…but that doesn’t mean parenting him is a normal experience (especially for me…Will is amazing at handling the day to day aspects of care but I am primarily in charge of research and doctors appointments and accommodations, and also Will just isn’t as neurotic or anxious as me). There are many times I feel like people think I am over-dramatizing or trying to garner sympathy with how I talk about parenting him, when that isn’t the case at all.

From the time I wake up until the time I go to sleep, not a day goes by that I don’t think of his dwarfism in some way, whether it’s clinical or emotional. I don’t leave the house in the morning without checking to make sure he’s alive, because I will never forget those long seconds in the hospital when he stopped breathing post-surgery, and I am petrified I’ll leave one day without checking on him and that will be the day he dies. Anytime he gets sick I worry that THIS will be the time his calcium will go crazy and we’ll end up in the PICU with him seizing. Shopping for him is depressing because all I do is wonder how much the sleeves or legs will shrink, or if the pants will look weird rolled up four times, or if he’ll look like a little hobo in giant clothes, or else I berate myself for not learning to hem yet, or beat myself up for being frustrated that I even have to deal with these stupid questions. We’re talking about redoing our kitchen right now, but we need to decide if we plan on staying in this house for many years or not, because if we do stay we want to make some accommodations for him at home. Like a stove with the dials towards the front rather than at the back, a low microwave rather than an over-the-stove one, possibly some built in steps by the sink that can be hidden. We will never own a top load washer or dryer. Even our experience with buying a kitchen for him for Christmas was fraught with pitfalls. There are so many minor things other people don’t think about twice.

We have recently been discussing whether or not we should get a handicapped placard for our car when he’s a little older, to make the distances he has to walk a little more manageable. Does he NEED it? I guess not…but is it something we should do to make his life easier in a small way? I don’t know. I want him to have every resource available to him, but not use dwarfism as an excuse. I want him to be comfortable talking about his dwarfism, but not feel forced to spend his time in public educating others if he’s not in the mood. I want him to have a good sense of humor, but not allow others to make fun of his condition in order to try and fit in. Every parent has a set of expectations and plans when they have a child, but most parents aren’t forced to articulate those expectations or massively adjust those plans when their child is so young.

And none of the things above even touch on what has happened so far, from the perinatal visits to the NICU stay to the surgery to the undiagnosed hell…it has been a very traumatic two years for Will and me. And people tend to forget that (as is expected, I know I probably forget about other people’s traumatic experiences and put my foot in my mouth more often than they would like). So all of this leaves me in an interesting predicament where I am trying to explain that Eli is completely normal and his day to day life is just as happy and easy as any other kid, but also trying to emphasize the gravity of what his diagnosis means for us right now, not only in terms of health concerns and doctors appointments and preparing for his future, but also in just pure mental and emotional energy. It’s a weird place to be. And…that’s really all I’ve got. I'll end with one last quote I really loved from a parent in this book:

• All my friends had these children they thought were perfect, and then they've had to come to terms with their children's limitations and problems. I had this baby everyone thought was a disaster, and my journey has been to find all the things that are amazing about her. I started off knowing she was flawed, and all the surprises since then have been good ones. 

I feel that so, so hard, even if some of the terminology isn't what I would use. We knew something was wrong right away, but the beauty of watching Eli become a person - a sweet, funny, happy, ham of a kid - has been the greatest joy of my life.