Me Before You: Why One Story Is Such A Big Deal

It’s been a looooong time since I’ve written and I could devote a series of posts as to why, but a magical thing has happened in that there is a current topic that strikes a chord with me and I actually have a little bit of time to sit down and collect my thoughts on it.

The past week my social feeds have been filled with angry articles and blog posts about the movie Me Before You, coming out tomorrow. I had seen previews on TV. It looked like a sappy romance about a woman who falls in love with a man who uses a wheelchair while caring for him… eye roll. I figured it was about how novel or brave it is for an able-bodied person to fall in love with a disabled person. Caregiver falls for patient, how tired.  Terrible premise for a movie and reeks of inspiration porn. But, as I read reviews **SPOILER** it became clear that it was actually worse than that. A major plot point of the movie is Will’s intent to take his own life through assisted suicide rather than live as a quadriplegic, a desire that he ultimately fulfills at the movie’s conclusion at a clinic in Switzerland. His condition is not terminal and he makes it clear that the reason for his suicide is that he would rather be dead than use a wheelchair the rest of his life. The two months that Will and Louisa spend together inspire her and are a sweet parting memory for him. They go their separate ways and he follows through on his plan. He leaves behind a sizable sum for the able-bodied Louisa to presumably #liveboldy — this is the official hashtag for the movie, I kid you not. This is supposed to be an actual theme in this movie: that you only get one life and you are supposed to live it to the fullest. All the while its main character is taking steps to end his, which is supposed to be understandable because who would want to live that way right?

Lots of people actually. I’ve been reading their stories all week. SO MANY great responses. One today from an 11-year-old. I’ve collected a few of my favorites at the bottom of this post.

This seize-the-day theme in Me Before You is dependent upon the idea that Will’s life essentially ended the day of his accident. Rather than his new connection with Louisa showing him that there is life beyond his disability, it seems to highlight perceived barriers to living his life as fully as he would like to, and he therefore confirms his opinion that his life is not worth living at all.

In addition to the voices in the disability community, I’ve also read a lot of rebuttals from those outside: Did you read the book? The screenplay is written by the author so I assume she did her best to preserve her original intentions, and it sounds like a lot of people who have read the book feel equally outraged. No one else wanted him to do it. At first, but as I understand it they all accept and some even “come around” to encourage and assist him in his decision at the end. It was not the author’s intention to… Most of the evil in this world is done by people with good intentions. Some people actually do feel this way. There is a really great post at the end of this blog that addresses this one so I won’t try. This is just one perspective, one person’s story. 

This is the one I’d like to focus on. It is just one perspective, one story. The problem with this, and perhaps why so many are hurt and angered by this movie is that droves of people will go out this weekend, get the big bucket of popcorn and sit back and indulge in a harmless romance. They will leave with tear-stained cheeks and feel all gooey-good and uplifted. They will connect with Louisa and be inspired to go out and live life to the fullest like she will do, presumably a better use of Will’s money. They will think about Will’s storyline as a tragic thing that happened and met its logical conclusion.

And the next time they hear a story about a disabled person taking their life, they will not be righteously angry, they will just sadly shrug. Those things happen I suppose. Or the next time they read about a parent “mercy killing” their disabled child, they will have empathy not for the child, but for the parent. What a hard decision. I’m sure it was an act of love. It seems like a harmless movie, but a very dangerous idea sneaks in there: disabled people are probably better off dead. 

I’m sure you’ve figured out by now why this strikes such a strong chord with me. As a parent of a child with a disability, I encountered the false assumption that his life is not worth living before he even left my womb. The most difficult and pervasive aspect of his disability is this idea, not his actual disability.

So sure, this is just one story, but we live in a society where it’s pretty easy for an able-bodied person to not interact with disabled people on a regular basis, or ever, and gain a real understanding of that experience. Many will go see this movie and make formative opinions about what life is like as a wheelchair user based on one piece of fiction, without actually knowing someone who lives that life everyday. These opinions have tragic real world consequences. My feed is constantly filled with them, and they don’t make me sad or wistful, they make me angry. Go ahead and google “disability suicide rate” or “murder suicide disability.” I’ll wait here.

How would this story be different if Will was a veteran? Or someone struggling with depression? Would we accept his death as easily? Or would we look at what else we could have done? Fight harder. Stage an intervention. Implore him to pursue counseling. Do everything we can to make him see that life can still be worth living.

The idea that disabled lives are precious is pretty baseline for a lot of things. If people don’t think disabled lives are worth living, how are we supposed to convince the world that they deserve basic human rights, widespread accessibility, a free, appropriate education in the least restrictive environment, a livable wage, quality healthcare, freedom from bullying and violence, freedom from sexual assault, equal consideration for organ transplants, self confidence, financial security… and the list could go on forever. It’s a really big deal.

One of my favorite quotes is “Fiction reveals truth that reality obscures.” (Ralph Waldo Emerson). We often go to the movies or read fiction to escape the harshness of reality, but one of the reasons I love fiction is that it holds a mirror up to humanity and illuminates how we view the world. This might be one story, but it speaks volumes about how we view disability, and our response to this movie tells the disabled community how we view them. I’m not saying boycott this movie (I plan to see it at some point in a “keep your enemies close” kind of spirit), but if you do go see this movie this weekend, take these perspectives with you and walk in with open eyes. Don’t let Khaleesi’s earnest eyebrows or Sam Claflin’s adorable dimples turn you into a mawkish puddle of sentimentality. I’m sure a lot of good intentions went into this movie, but the fact remains that people are going to walk away with a romanticized view of assisted suicide concerning disability and that is morally wrong and could potentially fuel an already huge public health issue.

A Day in the Life with Owen

Happy World Down Syndrome Day (a day late)! We are celebrating by participating in the “A Day in the Life with Down syndrome” project. This project is collecting stories from people with DS about what a day in their life looks like. Owen can’t really speak for himself so I will show what our Saturday looked like last week with pictures and what I imagined Owen might have said:

 

Good morning! I'm having some cheerios for breakfast.

Good morning! I’m having some cheerios for breakfast in my monster jams.

 

Washing them down with some milk in my straw cup.

Washing them down with some milk in my straw cup.

 

Here I am not so sneakily throwing my cup on the floor.

Here I am not so sneakily throwing my cup on the floor.

 

A little post-breakfast playtime.

A little post-breakfast playtime in my room.

 

Some light reading. Sandra Boynton is my favorite author.

Some light reading. Sandra Boynton is my favorite author. She really has a way with rhyming animals.

 

My hair was out of control, so we went to the salon, the one with the car chair and the elmo dvd.

My hair was out of control, so we went to the salon, the one with the car chair and the Elmo DVD.

 

It's not my favorite, but I sucked it up sucked my thumb like a big boy.

It’s not my favorite, but I sucked it up sucked my thumb like a big boy. I didn’t cry at all.

 

I can sleep just about anywhere. I decided the grocery store is a good a place as any to grab a few z's.

That haircut really wore me out, but luckily I can sleep just about anywhere. I decided the grocery store is a good a place as any to grab a few z’s.

 

I didn't nap for long, because we had to get this shopping done! I took it upon myself to keep the coupons and grocery list in order.

I didn’t nap for long, because we had to get this shopping done! I took it upon myself to keep the coupons and grocery list in order for mom.

 

Phew! Back home and I have really worked up an appetite! My therapist recommended eating finger foods out of an ice cube tray. It's supposed to help me grab things with my thumb and forefinger. It works pretty well.

Phew! Back home and I have really worked up an appetite! My therapist recommended eating finger foods out of an ice cube tray. It’s supposed to help me grab things with my thumb and forefinger. It works pretty well.

 

Unless...

Unless…

 

I throw it on the ground! Never mind that mom taped it to the tray with heavy duty packaging tape. That can't stop me!

I threw it on the ground! Never mind that mom taped it to the tray with heavy duty packaging tape. That can’t stop me!

 

But oh no! Now my blueberries are rolling everywhere and I don't like it!

But oh no! Now my blueberries are rolling everywhere and I don’t like it!

 

Might be time for another nap...

Might be time for another nap…

 

Definitely time for another nap.

Definitely time for another nap.

 

Now that I have take a long nap, it's time to do some drawing.

Now that I am well rested, it’s time to do some drawing.

 

Two hands guys. Can you draw with two hands?

Two hands guys. Can you draw with two hands?

 

Sometimes I like to start in a 2D medium and then take it 3D.

Sometimes I like to start in a 2D medium and then take it 3D.

 

Mom didn't get any pictures of dinner. It looked a lot like breakfast and lunch. This is my post dinner bath. Bubbles are so cool.

Mom didn’t get any pictures of dinner, but it looked a lot like breakfast and lunch. This is my post dinner bath. Bubbles are so cool.

 

That was a fun day! It looks like daddy had a long day at work so we are just going to chill. I think it might be bedtime.

That was a fun day! It looks like daddy had a long day at work so we are just going to chill. I think it might be our bedtime.

 

And that was that. Pretty average, uneventful day. The bigger picture for this project is to be a resource for parents with a new diagnosis — a window into what life might be like. When we first found out Owen had DS, I spent hours scouring the web for blog posts that would show me what my life would be like. To have these stories collected in one spot would have been awesome! This shows what one day looks like for us. A pregnant, cynical, and uninformed Danielle would have read this and wondered “Yeah, but this looks like an easy. What about the other days? The hard ones.” I would say to her that this is a typical day. Most weekends look like some version of this. But just to humor her, here is a broader overview of our day-to-day lives and how much DS factors in, which is most of the time, not very much.

Owen is 18 months old. John and I both work full-time outside of the home and Owen goes to a great daycare during the weekdays. He is in a class with other typical kids. He is a little bit behind his peers developmentally. Many of them are walking and he still working on mastering crawling. This is not as big a deal as I thought it would be. He learns a lot by watching them. And they learn from him too. His teachers have starting signing with Owen and now the whole class signs. Despite being a little behind them, he holds his own. I was worried about him getting run over by bigger, stronger kids and that’s not really been the case. He doesn’t let anyone take a toy from him and he has no qualms about getting in the mix with the other kids. He participates in all the same activities as the rest of his class. He gets along with everyone, but his best buddy is Cash. Cash usually comes crawling over as soon as he sees Owen in the morning.

Owen has three therapists: a physical therapist, a speech therapist, and a developmental interventionist. They go to wherever he is. We try to keep a mix of daycare visits and home visits. He usually has 1 or 2 therapy sessions a week that run for an hour each. Therapy does not run our lives, another thing I had been worried about. We have a good balance of family time, and just John and I time. Last weekend we went to a Prince concert. John is going to the Final Four in a few weeks (go big blue!). I visited my friends from college for the weekend a few months ago. When we think about planning a vacation, Down syndrome does not factor into our plans. I can’t really think of a time when Down syndrome prevented us from doing something.

As for hard days, we logged quite a few sick days this winter. Owen had RSV last year which causes recurrent wheezing for up to two years. We had two short hospitalizations for pneumonia, and several other times when we thought about heading to the ER. These were our “hard days.” I don’t know that I can give Down syndrome credit for them though. Most of the parents I have bonded with over respiratory issues following RSV do not have children with DS. I thought a weakened immune system might be contributing, which is sometimes the case with DS, but the doctor ran labs when we were in the hospital last and his immunoglobulin levels were normal. Low muscle tone could affect how productive his coughing is, and that might be one way that DS has adversely affected his health, but had he been born without DS, I don’t know that we would have avoided these issues. We all need help with these bodies at one point or another. I know families who have had harder and easier medical journeys than ours, both with children who have DS and those that don’t. We have had 551 days with Owen. 5 of them were spent in the hospital. We received great care and were sent on our way. When I think about the time we’ve had with Owen so far, I usually think about those 551 days first.

If my pregnant, scared self were sitting in front of me know, this is what I’d tell her:

Most of the things I worried about are not as big a deal as I thought they would be. Take it one day at a time. Owen is a happy kid. We are happy to be his parents. You are not having a diagnosis, you are having a baby. There are a great many things that make Owen who he is. Down syndrome is just one of those things, so read as many blogs as you’d like to try to prepare for what life with DS might look like, but remember you are reading about other people’s lives. Owen’s journey will be unique. And this is not just a life you can handle, it’s a life you want. It’s a really great one. Get excited.

The Business of Awareness

Owen had the best view at the 2014 Steps to Independence Walk.

Owen had the best view at the 2014 Steps to Independence Walk.

We kicked off the month of October celebrating with our local DS community at the Steps to Independence Walk benefitting Down Syndrome of Louisville. We raised over $2,000 this year, and on the 4th, family and friends gathered on the waterfront to participate in our very first walk! To those that contributed and participated, a big huge thank you! It was a beautiful day and a great way to kick off October which is Down Syndrome Awareness Month in the US.

It has been a crazy month for us as a family and I haven’t been as ambitious as some bloggers taking on the 31 for 21 challenge or 31 posts for DS Awareness in the month of October, but I have managed to read quite a few of them. As I have been reading my wheels have been spinning about this business of awareness.

What do we mean when we say we want to raise awareness? Because people are aware of Down syndrome. This isn’t a new thing. Down syndrome was identified in 1866 by John Langdon Down, but there are visual representations dating back to the 16th century that depict individuals with DS. Usually awareness campaigns are reserved for relatively unknown or increasing prevalent conditions. 1 in 700 births is a baby with DS. It’s been around for quite some time and hasn’t really fluctuated in incidence. Most people have known, met, or at least seen someone with DS. I’d be hard pressed to find someone who hasn’t heard of it. Continue reading

Join Team Owen!

If there were an award for “Best Place to Live If You Have a Child with Down Syndrome” I have to think Louisville, Kentucky would be in the running. I am proud to live in a community where there is a partnership between our local Down syndrome organization and the medical community. I am proud to live in the second state in the U.S. to pass a Down Syndrome Pro-Information Law. I am thankful that when we bought our house seven years ago, we happened to pick a home that is two and a half miles from the Down Syndrome of Louisville Lifelong Learning Center. And I am glad that they were our first call after we received Owen’s diagnosis. Continue reading

On Suffering and Down Syndrome

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The face of suffering.

I received the comment below on my last post concerning Richard Dawkins’ recent twitter comments:

“One comment that Richard Dawkins made was cherry picked and is now being used to demonize one of the greatest minds of our time. I may not always agree with Dawkins, but before you go off on him for not being more accepting perhaps you should make sure you read the entire conversation.

I have made a conscious decision to not have children as I do not want my mental illness (bipolar II) passed along. You ask “Who are we to decide which lives are precious?” I ask “Who are we to impose a debilitating condition on a life form?” I’ve had days where getting out of bed is a superhuman feat. I’ve been on the psychological/pharmaceutical merry-go-round for 30+ years, and there is nothing beautiful about it.” Continue reading

“Abort it and try again”

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“Abort it and try again.”

Was this nasty comment made by a faceless internet troll? No. Immature teenage kid? No. This twitter gem comes from Oxford scholar Richard Dawkins in response to a woman pondering today whether or not she would continue a pregnancy if she learned the fetus had Down syndrome.

When I logged in to twitter to see how this great mind had responded to the ensuing backlash, I was hoping to see a well thought out, albeit misguided rebuttal. I was surprised to find this:

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This is supposed to be one of the most intelligent voices of our time, and a champion for critical thinking and evidence-based logic. His defense is “everybody does it.” Continue reading

One Year Later (Part 2)

This is the second post in a 2-part series reflecting one year after we found out our son would have Down syndrome. You can find Part 1 here. Following our diagnosis, we had limitless support from our family, friends, doctors, and our local DS organization. But we still didn’t have our baby in our arms yet. There was so much we didn’t know about him and all we had were statistics and other people’s stories to try to piece together an image of what our lives would look like. Stats and probabilities weren’t really doing a great job painting a picture of the future. Here are some of the things our doctor wasn’t able to tell us about our son that day. Continue reading

One Year Later (Part 1)

20 weeks pregnant

20 weeks pregnant with Owen

 

One year ago today we got the call. The one that changed our lives. Actually we got the call the night before. On May 9th, the day that we were told that there was a 50% chance that our baby had Down syndrome, I had blood drawn for a MaterniT21 test. On May 16th, 2013, we received those results. Continue reading

Limitations and Obstacles

john and owen

 

“I’m just not that kind of person.”

“That’s just not how I’m built.”

“That’s one thing I know I could never do.”

You’ve probably said something like one of the above phrases before, most people do. For me phrases like that are a pet peeve. I can’t stand when someone tries to get out of trying behind an excuse of specialization. It implies that someone can’t do something because they are in fact, awesome, but simply not awesome at this particular thing. But oh, if you could only see them doing one of those other nebulous things at which they excel… just not this. Continue reading

Super Heroes and Silly Daddies

The following is a poem I wrote about my son, Owen, who has Down Syndrome, before he was here. When I wrote it I was scared and nervous, and as I mentioned, getting ahead of myself.

June 29, St. Louis Coffee Shop.

“How can I love you if I don’t know you?  Continue reading