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Friday, May 27, 2016

The Reeve Foundation Rears its Ugly Head with Me Before You Press Release

My dislike for the Reeve Foundation has no limits. Christopher Reeve never understood disability. He carefully separated himself from other people with a disability. To a degree I get this. He used his wealth and fame to shield himself from ableist bigotry. He swallowed the medical model of disability and believed himself to be different from all the other people who broke their neck. I am going to walk he said. People fawned over him as brave and noble. He was not brave or noble. He was simply lucky to have money and deep Hollywood connections. This empowered him to search for a cure to spinal cord injury. He was in short a medical industry insider and created a foundation that pays lip service to quality of life issues. They exist for one reason--cure of spinal cord injury. They rely on well worn stereotypes associated with disability to raise money. Victorian era values are successfully used to raise millions. The larger destruction the Reeve Foundation causes is not even thought of.

My dislike for the Reeve Foundation is fueled from time to time. Today was one of those days. The author of Me Before You, JoJo Moyes, has repeatedly stated that people with a disability, including quadriplegics loved her book. She also stated that the Reeve Foundation loved her book.  Moyes did not identify what staff member of the Reeve Foundation loved her book but she is certain they liked it. Today the Reeve Foundation released the following wishy washy non statement.

Me Before You touches on poignant themes about what it is like to both live with a spinal cord injury and care for someone as a family member and caregiver. However, while Jojo Moyes’ book is defined as fiction, the character of Will Traynor is very real to 5.6 million Americans living with paralysis. At the Reeve Foundation, our mission includes enhancing quality of life, independence and health for all individuals living with paralysis. The Reeve Foundation does not believe disability is synonymous with hopelessness or that living with a spinal cord injury is considered a fate worse than death. Disability does not sideline or disqualify someone from living a full and active life. Everyone living with paralysis can live boldly.

Me before you is not poignant. It is a romance novel that used disability as a plot device. It relied on one of the oldest and most destructive stereotypes associated with living with a significant disability--the assumption that death is preferable to disability. I know this because at least once or twice a year a stranger says tells me they would prefer death to using a wheelchair. Strangers have been saying this to me since I was 18 years old. As for the book addressing themes associated with life post spinal cord injury, technically this is correct. But Will, unlike 99% of people with a spinal cord injury live on the edge of poverty. Unemployment is rampant, access to housing and mass transportation remains extremely difficult. Ableism has impacted every part of American society.

The Reeve Foundation is ever so coy here. "Everyone living with paralysis can live boldy" . Give me a break. Borrowing the tag line from the movie here is just offensive. The Reeve Foundation taps into the myth that people who are paralyzed overwhelming desire is to walk again. Sorry, but no. The vast majority of people I know simply want to adapt to disability and move on with life. This is not easy because ableism is deeply woven into the the fabric of society. More to the point, the Reeve Foundation is part of the profit driven rehabilitation industry that sells a false bill of goods to newly minted paralyzed people. Walking is the one and only means of navigating the world. Rehabilitation facilities are now a brand that sell rehabilitation services. For example, the ReWalk is used at many rehabilitation centers. The men and women who use the ReWalk are "test pilots". Yes, test pilots. Think Maverick. Corporations rely on the fact that most people think using a wheelchair is bad or some sort of tragedy. Walking is ideal. You must try to walk. I get it. The human body was not meant to be paralyzed. But paralyzed people abound. Without a wheelchair millions of people could not navigate the world. I know many people that use a wheelchair who love their wheelchair just like me. Yes, I love my wheelchair.

The Reeve Foundation does not believe disability is synonymous with hopelessness or that living with a spinal cord injury is considered a fate worse than death. Really? This is essentially the entire point of Me Before You--the book and film. The young, wealthy Will wants to die despite the fact he is extremely wealthy and Louisa loves him. Will is rich and loved and wants to die. The message here is not exactly subtle. Will thinks life with a disability is a fate worse than death. Why else would he want to die? Perhaps he lives a twilight zone existence--great wealth is bad. Having a beautiful woman love you is terrible.

The only good thing I can say about the film is that it has created a hornet's nest like reaction. We people who embrace disability rights are angry. Social media has exploded: Twitter is abuzz as is Face Book. Instagram is afire as is Storify. My concern is this flash point of criticism will be forgotten next week. The mainstream media will move on to the latest news flash. Meanwhile millions of people will go to the theater and many tears will be shed. Tears that reinforce ableist beliefs that are wildly wrong. Tears that make me realize the ADA has no social mandate. Tears that reinforce the idea people with a disability have "special needs" and require "special transportation" and "special education". There is nothing special about me or my fellow cripples. We are just people. People that value our existence. Why I even value the life of those who are bipedal. Indeed, you guys are ever so special to me.


Cath Young said...

The film and book premise is repugnant to me. Sadly, I think it will be embraced by many. But I think that it is a positive that the Reeve Foundation made the statement that it did instead of jumping on what could have been a populist bandwagon. Sadly, unlike you, I have found that most people both in and out of wheelchairs feel that a cure for spinal cord injuries is much more important than learning to make for a better quality of life for those who use wheelchairs. Even my elderly MIL who found much relief in her chair, would have given a king's ransom to not need to use it and be able to walk. She would risk a lot of injury and go through much pain to walk rather than use the chair whenever she possibly could. I've seen the attitude a lot. Perhaps in time, those who find a wheel chair an essential part of themselves do shift gears. But the goal of a cure does hit the chords to give, and the Reeve foundation runs on those notes.

william Peace said...

Cath, Me Before you premise is deeply objectionable. However, there were some good observation in the first part of the book. The second half went off the rails in spectacular fashion. I suppose removing the book from books we love on the part of the Reeve Foundation and the press release are positive developments though glacial harbingers of progress. As you note walking in this nation is glorified as the one and only mans of navigating the world. This fixation after 38+ years of wheelchair use is a mystery to me. How many elderly fall and seriously injure themselves when such an injury could be avoided by using a wheelchair.

Miz Kizzle said...

The book sounds boring and maudlin and deeply offensive. I don't intend to read it.
It's appalling that people think it's perfectly to tell you that they'd rather be dead than in a wheelchair. I'd be inclined to reply that I'd prefer being dead to being as stupid as they are.

william Peace said...

Kizzle. I found large sections of the book offensive. It is so bad I just do not have the heart to really deconstruct or quote the most offensive lines but let me assure you they abound. The town I live in is dominated by what I call heavy duty Christians. Let me tell you they take God seriously and I am a prime target to be saved or helped. The fact I need no help nor do I desire to be saved isn't a blip on their radar. It has gotten to the point I no longer consider Sunday to be a viable day to be in the town.