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
#liveboldly riding a four wheeler
#liveboldly shooting a .22
#liveboldly “You can’t come to Mexico and not touch 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.”
#liveboldy traveling across continents with my family
#liveboldy in the adaptive cheerleading team
#liveboldly I have cerebral palsy and I’m a husband, father and pastor.
#liveboldly 67 years old with autism
#liveboldly with personality and a smile
#liveboldly on the saddle
#liveboldly “I graduate with a BA in Liberal Studies with a minor in Special Education”
#liveboldy as a Social Worker
#liveboldly at a school formal dance
#liveboldly climbing the hills of Romania
#liveboldly after a shunt revision. Matching dew rags during recovery.
#liveboldly and be creative
#liveboldly and go fishing
#liveboldly and climb 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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Thank you for this information.
We just need to stay strong and advocate for our community. Even the medical
field is clueless – my daughter’s first recommendation by her doc when they were told her baby had spina bifida was termination and all the negatives associated with this disability.
Exactly! If you search medical articles you only see negative scary things about disability. I’m so sorry you/your family were pressured to abort due to disability. It is stories like yours which motivate me to affirm life of the disabled!
I have Cerebral Palsy like your daughter. I haven’t seen the movie yet, but I read a digital version of the book and I feel the book and the movie promote assisted suicide which I feel is very dangerous for the disability community. “Me Before You” promotes a message that I feel is wrong and patronizing to people with disabilities. There are so many people who think those with Down Syndrome should be aborted based on ONLY the disability and this book promotes a similar mentality. I think it is natural for some people to feel depressed after becoming disabled but suicide is never the answer because regardless of whether the person is disabled or not if the person commits suicide a piece of everyone around that person dies with them. Suicide should never be promoted in any context. I also feel the writing is sloppy and unrealistic. If one wants to write a depressed disabled character they can certainly do that as long as the character is written as a full person with a full spectrum of life experience and emotions, and not a tool of inspiration porn. For example, if there was absolutely NO assisted suicide promotion nonsense, and Will inspired Lou and later decided to practice what he preached to her and get help for his depression I would not have as much of an issue with the story. Thank you for posting this to spread the word about why this film is sending a dangerous message! Disability is WAY,WAY,WAY better than death!!
I am 50 year old man with spina bifida. I will not stoop low enough to even comment on Me Before You. All I will say is that it’s obviously a movie about a man struggling with depression who happens to have a disability and everyone gets the two mixed up.
I have been a radical disability rights advocate for half a century now. I have lived on two continents – not despite my disability but because of it. Or should I say, because of my impairment. Because that is the right vernacular. Modern disability theory distinguishes between ‘impairment’, ‘disability’, and ‘handicap’. So does the United Nations and so should we all.
According to the UN, impairment is the actual loss of function. Disability is the loss or limitation of opportunities to take part in society on an equal level with others due to social and environmental barriers. And a handicap is the disadvantage, resulting from an impairment or disability, that fulfillment of a role that is normal for that individual.
So according to some of the greatest experts in the field we only become disabled or handicapped because we live in an ableist society.
My sad message to all you parents out there is this: as a group, doctors are by far the worst ableists you’ll ever meet. This is highly problematic since they are in the first line when it comes to advising parents on their (coming)disabled children. The main reason for this is what I call ‘physicians blindness’. We have to remember that most doctors are solely focusing on disease and impairment and they missed the lived life out there. They don’t see when little Joey is having the time of his life, they only see him either when he has hurt himself, when he is not able to live a fulfilling life because of his impairment, or when some part of his impairment needs to be ‘fixed’ in the eyes of society.
You need to ask yourself how many hours in a year are spent in the doctor’s office compared to how many hours your child is having a good time outside of it. If the latter exceeds the former, you are doing ok. If the latter by far exceeds the former, you are doing great and you should tell your ableist doctor (s)he is extremely ignorant for someone who has paid so much money for their education and you pity them their ignorance.
I finally got to see “Finding Dory” all the way through. Dory is very obviously disabled and the film shows that disability comes with BOTH struggles and joys and the message is “There is always another way to do something” which has been my motto my whole life! Finding Dory is the COMPLETE OPPOSITE OF Me Before You and does everything right that Me Before You got horribly wrong! WATCH FINDING DORY INSTEAD!