The biography of Blaze Ginsberg written by his mother Debra.
Overview and Review
First of all – considering that this book has been shown on Amazon with the tagline “A mother and son’s long, strange journey into autism”, nowhere in this book do Ginsberg or the rest of her family entertain or accept the possibility that Blaze might be autistic. In fact all the labels that professionals put forward are rejected by the family, and then they go off looking for another doctor who will tell them what they want to hear. That is that there is nothing wrong with Blaze and it’s all everyone elses problem because the world is too ‘ordinary’ for the likes of their family.
There’s very much an “us against the world” view when you read the book and basically everyone else is always in the wrong – doctors, teachers, other mothers, you name it. The book opens with Blaze requesting that they re-enact his birth, and do you know what as far as opening chapters go it gets you hooked. Then the story goes all the way back to before Blaze was conceived and we learn about the various difficulties that happen that end up in Ginsberg giving birth to and raising Blaze without the father’s presence. There are problems with Blaze’s birth and he has to stay in hospital for some time. There’s a bit more about the few months that follow Blaze’s birth and then we fast forward to about 12 months of age and talk about school.
“Figure out what your teachers want”, was my father’s advice for performing at school, “and give it to them.” In his opinion, school was where we learned how the rest of teh world behaved; as for academics, it was just a given that we would all excel. His advice on most schoolwork began with the statement: “Any idiot can do this”. Any idiot could do long division, or tell time, or write a paper. The things we learned at home were things that “any idiot” would never have access to, like the evenings we played board games as a group.
This is where the whole “us vs them” attitude starts to really come into play, and quite frankly the arrogant tone in which all of this is put across is very off-putting. I don’t know whether the Ginsberg family genuinely believe that other families never do things like family games night? As if they are so very special and different from all other familes. Blaze displays some atypical behaviors as he grows up but Ginsberg explains it as:
None of these oddities seemed disturbing to me when Blaze was younger. He was beautiful, luminous, and receptive. He was special, yes, undoubtably. I expected this. He was, after all, one of us.
Unlike all the other bland, unimportant, not-so-special people who weren’t part of Ginsberg’s family?
There are problems from the first day Blaze attends school and immediately the battlelines between the family and the teachers are drawn. You get the feeling from the very first meeting that there was never going to be a good outcome to Blaze’s placement in the school. Blaze is placed into special education and the attitude towards these classes is not a positive one; the main focus is to get Blaze out of them and mainstreamed. Regardless of whether that’s the best thing for Blaze or not.
Blaze’s problems do not get any easier as he struggles through both school and health problems, and Ginsberg’s family, especially her father are not exactly supportive of his difficulties:
My father asked, “He’s not going to become one of those sickly kids, is he?” which I interpreted to mean, “You’re not going to coddle him and make him want to be sick, are you?”
“I spend a lot of time with Blaze”, my father tells them, “and it’s true, he does say things that are difficult to understand at times. But when I’m with him, he’s not allowed to speak nonsense and he knows it.”
“You can’t talk nonsense at school anymore”, my father said to Blaze sharply, “They’re going to think you’re a nut. Do you understand? That teacher of yours – what’s her name – Mrs Something? She said you rock. I don’t ever want to hear that kind of thing again, do you understand?”
By this point in the book the lines have already been drawn that almost everyone else is the problem and that they are either useless, unhelpful or actively working against the family. The only professionals who are any use are the ones that agree with the family. Everytime a diagnosis or anything close to a diagnosis is brought up it is dismissed with horror and disgust by the family; there is the constant talk of getting Blaze back into mainstream classes despite the fact that it seems to be the furthest thing from what Blaze needs.
The book basically then goes through the disaster after disaster of Blaze being bounced between special ed and mainstream classes, and with the focus almost entirely on Ginsberg and what she and her family want for Blaze, we see very little that actually benefits Blaze himself. All of these problems result in Blaze being removed from school, an unhappy and self-hating boy whose has not received much in the way of individualised help – partially due to the unaccepting nature of his family. They’re so willing to label Blaze as extraordinary and different to the rest of the world, but not if that means there is a different label that gets attached along the way, be that ADHD, Autism or PDD-NOS.
Since Blaze is now a grown man and is writing himself, he was quite easy to locate online. What I found upon searching is that he has been diagnosed with autism. From what he’s done and written he seems to be doing well. Maybe if the people in his life had been more willing to accept the fact he is autistic and put in place the things that would have helped him as a child, he wouldn’t have had such a miserable time at school. This wasn’t an easy book to finish reading.
This was a difficult book to read and contained some deeply ableist views which were portrayed as being right. Bottom Shelf, Shattered.