Book Review

I FINALLY finished the book I was reading....

Too Late to Die Young: Nearly True Tales From a Life by Harriet McBryde Johnson. I think it was a very well-written book, AND some parts captured me while others didn't. I was much more interested in the disability/advocacy aspects of the book than in her political life. She lost me during the chapters on her run for the county council seat, but found me again in most of the rest of the book. I especially enjoyed reading about her trips to Cuba, and to Chicago for the Democratic National Convention.

I don't agree with all of her convictions, but of course I agree with her right to have them and express them. While I also feel that the Telethon centers way too much on the pity aspect, I do not agree with protesting its existence. The Muscular Dystrophy Association does a lot to help people with neuromuscular diseases, and I am just one small example of that. Rather than spend time and energy protesting the telethon, I would like to see people who benefit from the organization working together with the association to make the telethon more reflective of who we are as people with neuromuscular diseases...adults and children who want to lead active, productive lives. Ms. Johnston is a testament to this. She is not a person dying of Muscular Dystophy; she is an individual living with the disease. And in order to live our lives as fully as possible we need assistance...assistive technology and mobility devices, attendant care, rehabilitation and medical care, therapy, training, etc. And it all takes money. Plus there is the very important research aspect, which is making so many strides toward treatments and possible cures.

I know the above paragraph is pollyanna to a degree, because I have a feeling that the protesters would say they have tried to work with the organization, and they have refused to change the telethon. I believe that is true, and that is very unfortunate. What is also extremely unfortunate is some of the comments Jerry Lewis has made, both about the protesters and about other subjects as well. As the years go by I find his comments both on the telethon and in the media degrading to women especially. But having said all this, I do feel that the telethon has made some strides toward the portrayal of people with disabilities in a more positive light.

I am definitely in her corner regarding her thoughts on Terri Schiavo, although this topic wasn't covered much in her book. I read an article where she addressed this, and thought it was awesome. I think anyone with a potentially debilitating disability needs to fear what happened to Terri Schiavo. And unfortunately, her case is not isolated. It has just received more publicity.

I also realized that I really resonate with the title of her book. She talks about how the message in the media that people with neuromuscular diseases die when we're young is so pervasive that she wondered for years if she should even bother to do anything in her life. Why get a degree when I'm going to die soon. Why get a job? Why develop friendships? Why have a life?

And then suddenly she was approaching middle age. And she is a lawyer and an activist and she lives a rich, full life. She did not die young, as predicted by society. And she did not let that pronouncement stop her from achieving much in her life. And she continues to be an active, productive member of society.

I am really glad she wrote this book, and I am equally glad that I read it. I think it was very important that I read this book, and that I discovered it when I did. Everything happens for a reason.

librarianintx