I love books, and I’m taking the liberty to talk about the book, Me Before You, because the movie adaptation is coming out and people are giddy with anticipation. But mainly I’m talking about it because the book deals with disability, two of my children have disabilities, and [SPOILER ALERT] the book suggests that people with disabilities are so miserable that they would rather die than be alive with a disabled body.

I have a personal relationship with books and when I first read, Me Before You, I talked about the book to anyone who would listen. I think my opening line during that time was, “Have you read the book, Me Before You by Jojo Moyes?”

Full disclaimer, I originally loved the book while hating the ending. The ending never sat well with me. It bothered me. It made me angry.  I read reviews about the book and knew that disabled people were voicing their anger and concern over the ending of the book as well, mainly the message that disabled people want to die rather than live. But I was enamored with the heroine, Lou. I even  recommended the book to some friends, warning them the ending was terrible and they would hate the ending but to just “focus on the story.” Looking back I am now embarrassed I ever recommended the book.

My book recommendation reached two of my friends – who have cerebral palsy – because I wondered what they thought not only about the ending, but the story as a whole. As an able-bodied woman I know I have many blind spots when it comes to disability attitudes and abelism is not always obvious to me.

So as they read the book, we had many conversations about the messages throughout the story. I held on tight to my love for Lou as we discussed the themes in the book, I tell you I loved Lou! But as they shared about their experiences and what it is like to actually live with a disability I began to understand what they were saying.

As much as I loved Lou, it bothered me that Will was used as a prop in order to develop her character, and then when Will [SPOILER ALERT] ends his life via assisted suicide, she is the fortunate recipient of his money, her dad gets a job, and everyone lives happily ever after. All but Will, of course, because who would ever want to live being disabled, right? Sigh.

And if you want to read Tonia’s book review (a review by an actual person with a disability) check it out here.

Since most of you reading this post are probably special needs parents like me, let me speak directly to you for a moment. No matter what you think about the book or what I think about the book, ultimately, our children with disabilities belong to the disability community, and their community is telling us that this book and film is harmful to them. It perpetuates a stereotype that the worse thing that could happen in life is to be disabled, it hides abelism as niceness and good intentions, and it portrays disabled people as burdens and people who would be better off dead. If the community our children are a part of is saying this, I think we need to listen!

The book was written by an able-bodied woman and for able-bodied people using disability as a plot device. I never really understood what that meant (because I am an able-bodied person) until I started listening to the voices of the disability community.

With the movie coming up, you might have heard the tagline and hashtag of. “Live Boldly.” And in case you are wondering, it refers to Lou, the able-bodied woman who learns to #liveboldly thanks to knowing a disabled man. But isn’t it interesting that Will never gets to #liveboldly? Instead, Will wants to end his life because now that he is disabled he sees no reason to live, and he can no longer #liveboldly. I hope we all see how wrong this message is.

And here is the thing. I parent two children with disabilities and they #liveboldly. But they are not the only ones, let me share with you a few other people who are living boldly with disabilities.

#liveboldly 33 years living with Down syndrome

live boldly 33 years with Down syndrome

#liveboldly riding a four wheeler

live boldly riding a 4 wheeler

#liveboldly shooting a .22

live boldly shotting a .22

#liveboldly “You can’t come to Mexico and not touch the ocean.”

live boldly touching the ocean

#liveboldly, always. “My son just passed away.  He taught us so much about life and to not give up but, to learn to adapt with a disability and press forward. He smiled and shined.”

live boldly always

#liveboldy traveling across continents with my family

Live boldly traveling the world

#liveboldy in the adaptive cheerleading team

live boldy cheering

#liveboldly I have cerebral palsy and I’m a husband, father and pastor.

live boldly

#liveboldly 67 years old with autism

live boldly with autism at 67

#liveboldly with personality and a smile

live boldly with personality and a smile

#liveboldly on the saddle

live boldly on the saddle

#liveboldly “I graduate with a BA in Liberal Studies with a minor in Special Education”

live boldly and get a degree

#liveboldy as a Social Worker

live boldly as a social worker

#liveboldly at a school formal dance

live boldly at the dance

#liveboldly climbing the hills of Romania

live boldly climing the hills of Romania

#liveboldly after a shunt revision. Matching dew rags during recovery.

live boldly after shunt revision

#liveboldly and be creative

live boldly and be creative

#liveboldly and go fishing

live boldly and go fishing

#liveboldly and climb the Royal Gorge Bridge

live boldly and clinb the Royal Gorge bridge

I understand the pull for the movie, it looks like such a great romantic story. But as a parent of two kids with disabilities, as someone who fights for them and advocates for them, in the end this movie is not going to help them. I want the world to see the value of their life, and a movie like this spreads the message that disability is a terrible thing.

And if you still do not see the harm in this movie, let me leave you with these two great videos from actual disabled adults giving eloquent responses to the book and the movie.

This first video is my favorite, eloquent, and excellent at explaining the problematic elements in this story. It is worth your time.

After watching this second video, I wanted to clap for this woman. If you parent kids with disabilities, you will LOVE what she has to say to your kids at the end. You will agree with every word she says.
https://youtu.be/AVVQb0xoA6I

What are your thoughts on Me Before You?

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