The Things We Do Not Say
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I’ve been writing about Schuyler and her disability for over ten years now, which feels like both a long time and also just a moment, a flicker. I was writing back when we called them “online journals”, I later started a blog and wrote a book, and eventually ended up giving speeches to people with disabilities and professionals and other parents and families, always speaking simply as a father. In that decade, I’ve watched changes take place in the realm of advocacy. Some of them were good; some were simply changes.
For parent advocates, there are rules now, I am told, for the things that we can and cannot say. Break those rules, and we are dehumanizing the very people we profess to love. Say the things we are not supposed to say now, and we are causing harm. Express the things we are told not to say, and we demonstrate that our love for our kids isn’t real.
I once wrote that acceptance wasn’t something I was interested in, that acceptance of Schuyler’s disability felt like surrender, like giving up before it was time. In my book, I said it like this:
We’d learned to be on our own, navigating a new world of Schuyler’s disability, and with little information and no road map. We learned that for parents like us in the situation we were in, all you can do sometimes is trust in your fool’s hope and keep going. You never give up, and you persevere, not because you’re plucky or heroic or even smart, but rather because you hate the thought that there might have been some answer or solution waiting right around the next corner, and you would miss it if you gave up too early. It’s hope, and it’s stubborn and sometimes it’s even stupid, but it’s the thing you’ve got so you run with it. You go into battle against the monster with a rubber sword because, really, what else are you going to do?
Now it’s a thing you do not say. You do not fight your child’s disability because now that means you are fighting your child. There are no monsters, there are just children and their differences. I have even been told, on a number of occasions, that fighting for Schuyler’s right to communicate using assistive technology was wrong. Accepting Schuyler and truly loving her means allowing her to communicate with her natural voice, as best as she can. (To be fair, I don’t think this represents the position of very many advocates.)
If we don’t accept things the way we are, we’re rejecting our children. It’s a simple position, no greys, just a black and a white.
When we hear the seemingly inevitable stories of parents of kids with disabilities who hurt or even kill those children, the same discussions begin anew. Members of the media, and some parents as well, begin to ask questions. Why did this happen? Why did these parents lose hope with such overwhelming finality? What could have been done to help them, to stop them from reaching the point where they even consider committing such a monstrous act?
But these are things we cannot say. To ask those questions is to devalue the victims, to make the subtle suggestion that somehow, such an act can be justified when we start looking for causes beyond pure evil. I’ve been watching this particular scenario play out over a number of years, and while I’m not supposed to talk about it, I do think about it. I wonder if things might have been different if we’d had a different conversation a few years ago, if we’d looked for broken parents instead of vampires, if we’d sought change and relief instead of retribution and justice. And I wonder about those kids for whom the same fate might be waiting years hence. Can we help them now? Or is this a cycle that we are doomed to repeat, but not talk about, because we’re not supposed to talk about it.
In the past, I’ve also written about a process of grieving that many parents go through when given their child’s diagnosis. We learn to let go of the children we imagined in the future, the ones whose daily lives look a lot like the ones we lived in our youth. Perhaps we do this because we are bereft of imagination, or because we are endowed with more imagination than is good for us. We let go, and we grieve, and then we set our sights on this new future, the one we are committed to with all that we are, even if we don’t understand it. (And how could we?)
I am told now that this is something we do not say, either. Admitting this is to say that we would rather have another child, that we don’t value our kids unless they are unimpaired, that if we could choose, we would take that child from our imagination over the one we have.
Schuyler is now thirteen, and there are two things I will say, whether or not I’m supposed to. (You can issue me a citation if you like.) The first thing I need to say is that I wouldn’t trade Schuyler for any child in the world, real or imagined. I wouldn’t choose not to be her father, and I would do anything for her, anything at all. My life is hers, it is forfeit to her needs and it is in the service of her happiness.
The second thing I have to say is that if I were given the choice, the opportunity to give her a life without her disability, starting fresh today? If I could take her monster away and send it to the bottom of the sea or the heart of the sun, or to some distant monster zoo on the other side of the world? I would do so in an instant. I would repeat the prayer I offered the night Schuyler was diagnosed, directed at God (although in retrospect, it feels more like a Devil’s deal), to take her broken brain and make it clean and clear, at the expense of my own. I’d sign on the line before the paper hit the table.
Is that wrong, to want to take away something so central to Schuyler’s person, simply to give her the chance to live a life that I see as being potentially better than the one she has now? Is that arrogant? Does it diminish her? Perhaps. I’d say you have an excellent case for it being wrong. Maybe that’s why I’m not supposed to say it.
Here’s the thing, though. Last week, as I left the eighth grade football game where Schuyler had cheered for the first time, I found Schuyler standing with members of her cheerleading squad. They were all talking and laughing, but Schuyler stood apart. When she saw me, she said goodbye to her friends and caught up with me.
“Daddy-O?” she said. I looked down at her. “I wish I could talk like that.”
I asked her what she meant, although I thought I knew. She didn’t just mean talk with her natural voice, although that was part of it. She mimed with her hands, making fast-talking little ostriches, looking and jabbering quickly at each other.
“Do you mean you wish you could talk fast like they do?” I asked. She nodded.
“My iPad is too slow,” she said. “I want to talk like that.”
I’m not supposed to grieve for the version of Schuyler who could have had that life, who could have stood in a circle of her peers and kept up with their chatter, and who could have understood all of it, too. It’s hard to know how much Schuyler understands about her intellectual disability, but I’m pretty sure she’s noticed.
Schuyler grieves for that person she could have been, too. She lives the life she’s been given, and she lives it fiercely and with a lot of joy. But given the chance to release her monster into the wild, never to see it again, I have no doubt in my mind what she would choose to do.
One day, I hope she’ll choose to talk about it. I hope the world will be in the mood to listen.
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About The Author
Rob
Robert Rummel-Hudson is the author of "Schuyler’s Monster: A Father’s Journey with His Wordless Daughter", which tells the story of raising a little girl with a disability and learning to become the father she needs. It was published in February 2008 by St. Martin’s Press.
Yep. that about says it. My son struggles with some aspects of his disability. It is SO HARD for him sometimes. He’s nonverbal and uses an ipad to communicate and even then his communication is somewhat disjointed but we get the basic idea. He is frustrated. He is lonely. He has no friends. Would I take all that away? In a heartbeat. While I don’t want to take away the things that make him ,well, HIM, I do want to take away the things that cause him pain and discomfort, that injured his beautiful brain (I think it’s fine to say you hate seizure disorders!) and that keep him awake at night. He tries SO HARD. I just want it to be easier for him. yes, it’s easier for me by default. But I, too, defer it all to him. I forfeit for him. My life is his. I give it willingly. I just wish I could give a little more so that the things that are so stinking hard for him were just a smidgen easier. And I don’t care what anyone thinks, I don’t think it’s wrong to want things easier for your child.
I have the same problems around here.. I am not allowed to question anything concerning Maria’s disability. Hers has no name except for Gulf War Syndrome and no one knows what it is around here nor how to help her.. So they help the various “anomalies” she was born with. Her speech is greatly affected due to her not being able to touch the top of her mouth with her tongue. Signing for a great part, but we encourage her to try and say the words.. In others’ eyes that is not accepting her the way she is. SO frustrating, all of this. Us pushing out child to try a little harder than the average kid born with nothing wrong in order for her to have a more productive life, and I’m wrong for that?? Seriously?? OH and I have begged God to take away her disabilities and put them in me instead.. Have done this thousands of times in her life. So far, no dice, but that will not make me stop asking.
Rob:
I’m reading this & I’m angry. Who makes these so-called rules? It seems to me these “rules” come from those who choose to shy away from what these children are going through. It sounds like people dealing with mental illness…you don’t talk about it. I wanna know who makes these stupid rules! Anyone who has followed your story knows you have incredible love &respect for Schuyler. Giving her assistive devices to enable her to live a better life isn’t wrong. You shoulld always speak out about Schuyler because the decisions you make re: raising her will help parents in the same situation. Listen to your heart, Rob. You are a great dad
i have been following your blog for awhile and am very familiar with this perspective. and as a parent with a child with mild cerebral palsy, a child who has trouble speaking and running and playing with other kids, i’ve considered these issues myself and can see where you are coming from.
let me play devil’s advocate for a second, though. what if we replaced “disability” with race. i’m Chinese, raised in America. how would my mom have reacted if, as a child, i came home one day and said, “I don’t want to be Chinese anymore, I want to be White.” i think she would have understood my frustration–i was picked on for my race, still am sometimes. but she would not have wished whiteness for me. instead, she would have wished that society changed their attitude toward race, changed the assumption that being white is superior. she would want to work to change society so that they value my race, along with being white.
maybe that’s why those arguments about accepting disability are there. not because we don’t acknowledge the grief and the frustration, but because some, or most, or some would say all, of the problem is with the way that society devalues people who don’t live up to the perfect ideal. so i’m going to push my son to talk as “normally” as he can, but i’m also going to push his school and his cubscout troop and his peers to be more accepting of his differences.
That’s an interesting thought, although I’m not sure the parallel of race and disability works very well. Racism is a 100% societal issue, and while the idea of a kind of “racial blindness” has many problems of its own, as a cultural equalizer it is possible. Do we want it? Culturally, I’d say absolutely not. But in areas like hiring, etc., of course.
Disability doesn’t work like that. It requires more than “acceptance”, it requires that society make allowances, to create access to opportunity, and to reprogram cultural norms. That’s a lot trickier. When Schuyler and kids like her wish for things to be different, their reasons run deep. And when parents wish for (and work for) things to be different, whether you believe that to be right or wrong, their reasons run just as deep.
Thank you for posting. You’ve given me food for thought.
i agree, it’s not a perfect metaphor. also, even though i can understand the other side, i don’t necessarily agree with the implementation. telling people they can’t ever say certain things, or that the things they feel are wrong, is never a good sign.
Here’s the my thought (and I’m borrowing from the language of Adoption Reform): There’s a loss at the heart of every disability. Is it a total life’s-not-worth-living loss? Of course not. Does the battle against the limitations bring compensations? Of course. But when you celebrate the silver lining, you’re acknowledging the reality of the cloud, whether you admit it to yourself or not.
One of the charges made is “Your child would be a different person without their disability, so wishing for a cure is saying you don’t love the child you have now!” But is that really so? The normal experience of childhood– for both disabled and neurotypical kids– is to gain new skills, abilities and insights as they grow up. Does that mean you lose your love for your child as their development progresses, on the grounds that they’ve “become a different person”? Or if you love your 18-year-old, that you must not have loved them when they were six months old?
I oppose the idea of unutterable thoughts and ideas. All ideas should be dragged out into the light of day, where they can be examined, and the false and unjust ones refuted. This process is how we came to have the disability rights we enjoy today.
Mind you, I still want to scream at my computer screen whenever a certain poster reiterates his theory of women being “complicit” in their own rapes for failing to guard their drinks from being roofied. But if people are thinking like that, it’s better to know it than not. And you can’t explain what’s totally wrong about this idea without it being spoken.
I make no appologies for wishing my son were typical. If that makes me a bad parent then I guess I am.
I love him for everything he is but if I could do something to make his life easier then I would be a bad parent not to try. He works harder than a seven year old should have to, and I wish I could make it better.
Oh, my heart. This is just so good. <3
Yes! I fight FOR her, not against her. I fight to give her tools, not diminish what she has, she is. I try to help her be more comfortable in her own skin, so that she can one day get her own needs met- and not be unable to do so.
THANK YOU THANK YOU THANK YOU for saying all of the things we’re “not supposed to say”; things I say on a daily basis to my friends and family. If I could take away my son’s Down syndrome and autism I would do it in A HEARTBEAT! He’s 7 and he can’t even call me “mama”. I still change his diapers. Every day is a struggle. Am I suicidal or homicidal? Nope. Not even slightly. But the battle is never-ending and . . . is . . . EXHAUSTING. Sigh, to face the “problems” that NT parents face. Sounds heavenly to me.
This is thoughtful, inspiring, reassuring and very well written. Thank you for putting this – and yourself – out there.
A lot of the problem isn’t parents who want better for their children, or regret that their chikdren’s life is not eisier. It’s not the ultimate tragedyof parents whi break under the strain, and see death as the only escape.
The problem is with the media coverage, which interprets this as being the fault of the child; who describe the child as the burden, rather than the difficulties that they and their parents or carers face. This is what we need to challenge: a media to whome our children are not people, but problems, intolerable burdens that are too much for “perfect” parents to endure. We’re not perfect, we’re human. So are our children. (Disclaimer, I’m aspie, and an aspie activist, and gradually losing my mobility to arthritis. My oldest son is also lookin like he’s likely to be aspie, and has mire difficulty then me.)
I think it’s safe to say that in general, the media consistently drops the ball in coverage of disability issues.
Yup. Well, more than drops the ball. I can’t help seeing it as more than just ignorance or a mistake. The consistancy of the treatment can’t be accidental.
Still, whatever sells papers, right?
When I went to school at Syracuse University we were taught about the grieving process for individuals with disabilities and their families. For me it is simple. If we can agree that the disability is only one part of a dynamic human being, then it is not a great leap to say that the disability is not the totality of the person. If we can agree on this, then if the disability were to disappear there would still be all the other dynamic pieces of the individual. Giving power to the notion that to desire the disability not to be present means that you don’t love your child for who they are is denying the totality and beauty of dynamic individuals. It is the difference between a disabled person and a person with a disability. I realize that in this last example, this is just a matter of semantics. For me, for my life’s passion of working with individuals with disabilities, if I could remove the disability from every last person that desired it, I would. And I would still love them, just as I had the moment before when the disability was present. Thank you to the courage a individuals with disabilities and their families. Live in truth and share it. It is the only way that we can authentically exist.
Thank you. You have found expression for what I have wanted to say. To ignore the jealousy (of other’s abilities) or the grief (over things you’ll never have) is to ignore the very humanity of it. “Normal” people have struggled with these for eons – as testified to in literature in all languages. Is it any sin that those who find themselves “outside the circle” know it and wish differently? I recognize that if my child was someone else, we would just have different battles to face, other strengths and weaknesses and abilities to conquer and support. I recognize that the richness of their life is determined by their challenges – but I’m not going to pretend that I don’t like the challenges we got. To do so would minimize them, and minimize their struggle. I will sorrow with them, and find strength with them, because THAT is what living is about…
You articulate this point so very very well, thank you. I personally get frustrated with that I’m not even supposed to say my daughter is “disabled”, I’m to call her “differently-abled”. In reality, her body is broken (due to a brain injury), and simply does not work right. She can’t eat, talk or walk, and I’m somehow supposed to celebrate this and never want anything different for her? That’s BS. I love her to bits and pieces, but I would love to be able to fix her broken body, and to make it work right. I don’t apologize for wishing that for her. It’s fine if other people want to view their circumstances a different way, but it’s not fair to demonize me for wanting more for my daughter. Overall, people just need to find a way to be ok with individual ways of viewing and dealing with what life hands you, it doesn’t have to be a one-size-fits-all deal.
Just happened to stumble upon this blog/ post today. Thank you for putting into words what I can’t.
Melissa
My daughter has seizures and a severe speech disorder, among all the other delays that come along with those things. She’s 8 years old, and every single phase of her development has come on her own timetable with great effort and difficulty on her part. We are proud of her determination and celebrate every new accomplishment. We love her unconditionally and are amazed by her every day. Have her disabilities contributed to the person she is today? Probably. Do I still wish I could make her “normal”? Absolutely! I watch her struggle to do basic things that come easy to other kids. I watch kids at the park and at school discount her value as a friend once they realize she can’t talk. She’s still young and really only just beginning to notice how different she is from her peers, but I see her becoming more aware. She’s happy overall, but there are moments of sadness and loneliness that are becoming more and more frequent. How could I not wish for things to be different for her? Of course I love her just the way she is, but if I could give her the ability to communicate the same way as other kids her age, or take away her seizures? I would do it in a heartbeat! Maybe some aspects of her personality would be different, but I don’t believe it would change the heart and soul of who she is. She’s not my only child. I know life isn’t all sunshine and roses for “normal” kids either. Life deals all of us struggles, but if I could level the playing field for my daughter, I certainly would. It does NOT make us bad parents to want to change something that makes life hard for our kids.
I wholeheartedly disagree with the above parallel to race. I am even a little offended by it. Unlike race, my daughter’s problems can’t be fixed by changing the attitude of society. Obviously, I agree that society needs to make allowances and be accepting of people with disabilities as a whole. But no amount of acceptance from society could change my daughter’s day to day struggles with communication and learning. Society can be as accepting as it wants, but when my daughter’s brain decides to misfire, she’ll still have a seizure. Her day will be disrupted and she’ll be scared and confused by what just happened to her body that is completely beyond her control. These are the things I would wish away for my daughter. It is NOT at all the same as wishing for her to be a different race.
I stumbled upon this website for the first time today. This post hit home. It’s like you wrote down what I’ve been thinking for months, said it better then I ever could, and now I feel less alone. Thank You. You said you wrote a book? What is it called?
Rob’s book is Schuyler’s Monster.
“I’m not supposed to grieve for the version of Schuyler…”
But that is just it. There is no other version of Schuyler. She has the brain she has and without her disability, she’d be a different person altogether. Not Schuyler. So to your assertion that you’re “not supposed to”, I’d just say that you simply aren’t. You’re talking about a grieving an idea that simply isn’t reality.
Personally, don’t I think you’re wrong for lamenting the difficult parts of Schuyler’s disability, absolutely not. As a parent, it is hard to watch our children struggle, or as is sometimes the case of a medical condition that causes disability, be in pain. I can’t say that I wouldn’t feel any differently were I in your shoes. I’ll never know though, of course.
It seems, however, that you think that you’re the victim of the “rules police”, if you will (, and that bothers me. I personally had a very hard time finishing your book because of your repeated use of the word “broken” and discussing your child’s disability as a monster. Having a very public writer discuss disability in that way makes me feel that my son is likely to be seen that way as well, and that is damaging. My opinion only here. Does that make me someone who created a “rule” for expressing a reaction to how you frame disability?
I think people can discuss things on the merits, not argue that an opposing opinion is arbitrary and oppressive.
I’m well aware that my child could also grow up to wish one of his chromosomes away. I’ll never do anything to frame it that way for him though, not my place. But that is my take on parenting, not a rule.
Also, I’d say that race and ethnicity can require accommodation. Language, for example. Religious dietary needs. Every difference requires some level of access, if only to right the segregation and inequity created by a previous generation (in the case of African Americans in this country). Perhaps not the same as assistive technology, but I don’t think it is quite as different as you were arguing.
“But that is just it. There is no other version of Schuyler. She has the brain she has and without her disability, she’d be a different person altogether. Not Schuyler. So to your assertion that you’re “not supposed to”, I’d just say that you simply aren’t. You’re talking about a grieving an idea that simply isn’t reality.”
I’m sorry, but I quite simply do not agree with this. It feels like a wild oversimplification and a kind of black and white thinking that doesn’t reflect the nuances and subtleties of what it means to be human.
I totally understand your issues with the way I expressed myself in my book, but I actually think the fact that you extrapolate my writing about my daughter into an expression of a larger view of disability is a pretty good example of “the rules”. In a memoir about my daughter, my language is still expected to accommodate the perspectives and philosophies of any person who might read it. Diversity of opinion and perspective remains a questionable quality in our “community”. Those rules, which make many readers feel more comfortable, ultimately do our cause no good.
Discomfort does not equal dismissal. As much as we all want the world to respect out children’s differences, we are weirdly inflexible about our own.
hello again.
first i wanted to apologize if i offended in my use of the race metaphor. i wasn’t meaning to equate race with disability; it was just one way i have been able to understand why people might be offended by the possibility of grieving over a non-disabled version of a child. it certainly is not the same thing.
this may be another over-simplification that i’m about to make, but apparently i like to stir the pot with this issue. feel free to tell me to stop. anyway, i understand the annoyance with the “rules police.” however, aren’t there some circumstances where we think having some rules policing is a good thing? for example, i’m pretty rules-polic-y about asking people to not use the r-word. perhaps the difference there is that i’m asking people to modify their expressions, which is less deep than telling people they are not allowed to feel a certain way?
Jo-Ann, I didn’t feel like your comment was offensive. It is absolutely okay to comment here with your opionion, or to pose other senarios. I don’t feel like you have to apologize and I felt like your comment was respectful.
I’ve been thinking a lot about some of this ever since I saw the news about “turning off” the extra chromosome that causes Down’s. Would I cure my sister’s Down syndrome, given the chance? Take away this thing that has–in some ways–been both the best and worst thing to happen to my family? I tumble it over and over and I realize: it’s not my choice to make. If researchers came up with something that could cure my sister’s chromosomes now, at the age of 27, it wouldn’t be my decision, it would be hers.
Now, I’m not a parent, so I’m not as conditioned to speak for or make choices for others the way some people on this site are. My advocacy and defense of my sister comes from siblinghood, not parenthood. And this doesn’t solve the issue of how to make decisions about problems that are diagnosed in utero.
I do think you make this distinction, Rob, though I don’t think you say it explicitly (and don’t recall that you ever have). I know you’d do anything to banish the monster from her brain, and that’s okay because *that’s what Schuyler would want you to do*. Given the chance, you and Schuyler would make the same choice. That’s a crucial aspect of the hypothetical to me.
It doesn’t simplify the issue, at all. But what I see a lot of–both in the comments here and elsewhere–is different versions of, “Would I cure Sam’s [whatever]?” and not a whole lot of, “Would Sam cure his [whatever], if he had that option?” And I know that that doesn’t mean that people don’t think about it that way, but it doesn’t hurt to phrase it that way out loud sometimes. And if Sam doesn’t want to cure his [whatever], then the job isn’t really how do we fight the complications caused by [whatever], it’s fighting other people who make having the [whatever] harder than it needs to be.
My brother was born when I was 7. He had Down Syndrome. He was high functioning enough to know he was different and he hated it. He wanted to be able to keep up with his older siblings. He wanted to be able to talk better. He wanted to be able to do so many things that he flat-out couldn’t do. That, more than anything, made me angry on his behalf.
Would I take away his disability if I could? In a heartbeat. He lived much of his life frustrated and angry at his limitations. He withdrew. He’d talk to family and close friends, but anyone who didn’t take a lot of time to get to know him would probably wonder if he could talk at all.
He died a couple of years ago and I miss him more than I know how to express. I have found myself saying once or twice, due to lots of changes that our family has gone through, that in some small way it is good that he died when he did because he would have been even less happy about the changes around him. I will never stop loving him and I miss him terribly. If you want a set of words that no one is ever supposed to say, though, add in “In some small ways, it’s better that he died when he did.” That makes people incredibly angry. My brother was not adaptable, particularly. He didn’t like change. He would be upset for weeks or months at small changes, and there have been huge upheavals. Other people, though, seem to think that by saying those few words I am saying I didn’t want my brother in my life anymore or that I didn’t love him, and neither one of those things is true at all.
Everyone lives their own life and has their own experiences. No one should say that one person’s pain is greater than someone else’s; it’s impossible to know context, history, etc. This is even harder when disabilities are in the mix, and I wish people would accept that my reality with my brother is different than their reality with their family member.
“Broken” is sometimes the right word. “Monster” is, too. Please don’t let people tell you what you should be allowed to say about your reality, your family, the people you love. I appreciate your writing even when it is sometimes difficult to read.
Got to love the “rules” of the online world. Been online for 9yrs now and autism-land has never become parent friendly in all that time. Those that are independent, make certain those with disability aren’t given a voice. But they do like to go after those that question them, that try to talk about how overwhelmed they are, that blame the parent should anything go wrong… Then they wonder why people finally give up and either leave the online world or as it unfortunately happens… snap. The last “snap” that happened a couple of weeks ago was my last “straw” and I’ve even deleted “friends” from my email… done with autism land and it’s refusal to view autism as a disability.
I finally completely quit ties. I finally removed them from my lists on my computer. Their books are being removed from my goodreads and booklikes pages. I’m done.
Autism is difficult, frustrating and terrifying. Like you I would fix my youngest son in a heartbeat. Yes, he’s amazing. He’s severe but not ID – that was an ooops but I won the classroom battle – yet still has toiletting issues. He should not have to live in care and be happy about it when he becomes and adult. He should be able to live a full life like everyone else. But the “advocates” tell me that’s cruel and I should be proud that he can be silenced and sit in a corner and be ignored. Considering he’s nearly 12 and hates the fact he can’t go outside without a babysitter… I’m certain he’s not impressed with them and their opinions.
The only thing we can do is “talk” about it. Advocacy starts at home. The online world still hasn’t realized that truthfully most people know little about these “camps” (everything from autism to books) that care little about them. Home first… people that actually know people.
http://www.ctvnews.ca/w5/nursing-home-residents-at-risk-w5-investigation-reveals-startling-national-statistics-1.1149215 And they wonder why people fear what will happen to their children.
Keep talking….