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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.


Unknown 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.

Wendy H. said...

The book sounds terrible. I hadn't heard of it before seeing your commentary, and I have no desire to read it.

I hadn't thought about your perspective on walking vs wheelchair use before, at least not really. I finally started using a wheelchair part time in December 2015, and I've had thoughts at times about wanting to give up even trying to walk and just sort of surrender to the chair, but have always talked myself out of them, and certainly not mentioned them to anyone. I thought I was being weak, lazy, stupid, you name it... But I guess not... And I most assuredly never thought I'd rather be dead than use a chair...

I can walk, and quite well, much of the time; I use my chair to manage chronic pain, fatigue, and balance issues, after some 15-20 years of wishing I had something and *finally* giving in.

The relief has been amazing - and so has been being able to just get out and *do* so many of the things I'd had to give up over the years after a career-ending on-the-job injury in my paramedic days in the early 80s. Give up or suffer badly from trying to do, knocking myself out for sometimes weeks and months at a time after attempting. Not a great way to go through life...

That chair is *freedom* for me, of a sort I have not had in decades. It's been amazing to me how many people just do not get that and look at me in pity, when the reality is completely the opposite. The pity was a young, vibrant woman not being able to do everything she wanted to for literally decades because propelling herself on foot was just too painful and too much to deal with.

Do I wish I could still walk and bounce around on foot as carefree as I did when I was younger? Of course. Do I think that's how I should *have* to try to navigate the rest of my life, without any help, or that my life is somehow over because I've "given in" and gotten a wheelchair? No way.

I've gotten at least somewhat beyond that, which is what allowed me to finally get my chair (and then a van), although I do think it would be stupid to do anything to lose what I do still have, so I have not given in, and keep on walking when I can without knocking myself out. I'm still learning to pace myself and find the right balance, but it's getting there.

It really saddens me as well to see so many elderly people struggling so badly to keep walking when it is as obvious to me as it can be how much better off they would be with a wheelchair. I understand the fears and concerns, and the desire to keep walking, and even the thoughts that giving in to a chair (or other mobility device) is a form of giving up, but, my goodness, the freedom...!

I've actually turned into somewhat of an evangelist to encourage the elderly people in my circles who are substantially mobility-impaired to just get the heck *off* their feet and relax :-) I'd love to see them enjoying life more, and with less pain and fatigue.

For anyone out there who is struggling with making a choice about using a chair or not, or with having found yourself needing one 24/7 unexpectedly, I recommend reading "When Walking Fails: Mobility Problems of Adults With Chronic Conditions" by Lisa Iezzoni.

That is what really flipped the switch for me, in taking a look at just how we do tend to idealize walking as the *only* and *best* way of getting around in our culture, and giving me a window into the possibility of eliminating the *means* of getting around as the major consideration vs looking at what changing my thinking would allow me to do.

Unknown said...

I can't understand the disrespect for Christopher Reeve. How is it possible for you to say he has never understood disability? If a disabled person doesn't understand disability than who does? He lived a different life from you so that means he was wrong? Because he wanted to have hope and because he wished he'd be able to walk again, he separated himself from all other disabled people? Can you be certain that other disabled people don't have hope and don't wish, just like Reeve, to regain function? Your speech about him is so terrible. For someone who complains about cruelty towards the disabled, you sure didn't seem to hesitate to be cruel to a disabled person yourself. I do not wish to upset you, I read a lot of your posts and I think you make a lot of great points and agree with so many of them, but this I cannot comprehend.

william Peace said...

Unknown, Reeve went out of his way to insulate himself from other people with disability. He had the fame and money to make this possible. I get this to a degree. Ableism abounds and routine social interaction is never routine. Yet most people, almost all in my experience, realize disability is largely a social problem. Reeve utterly rejected this and missed an opportunity to make a significant contribution to disability rights. Instead, he embraced a medical model of disability and relied on worn out stereotypes to raise money. Reeve was not alone I suppose in this regard. Some people want to be cured and others use the exoskeleton. These people are the exception and hardly mainstream. In my experience people with a disability simply adapt and mover on. My words were harsh but far from cruel. Bigots are cruel and they abound. Perhaps Reeve would have understood disability had he not worked so hard to insulate himself. Sorry you cannot understand why my views are so strong.

Roger Chylla said...

I understand your objections to The Reeve Foundation in general but not specifically with respect to "Me Before You".

From all accounts, the Foundation seems to be critical of this movie and book and is pointing out its problems. They seem to be the same problems that nearly everyone concerned with disabled rights is pointing out.

The quote to which you respond "Really" is THEIR position that is in contrast to the movie/book. That's why they made the quote in the first place, because they believe the movie was contradicting it.

Am I missing something?

Anonymous said...

William, watch ''hope in motion''. It was very clear that Reeve was being scammed and fed information and false progress from his ''team''. They kept telling him he was making ''significant progress'' when really there was none there. Christopher Reeve indeed didn't want the Quad life and desired a way out but the delusion was supported not only by Reeve's own mind but his health and fitness team (whoever those people were).

Do not forget, Reeve also had a physically isolating injury and was in bad health. It only fed his desperation further. I don't think Reeve was a bad character, just a confused, deluded and desperate man who could never accept reality. But I am not denying the reeve effect, it still echoes today and the Reeve foundation still has too much power. I wish they'd just disappear.