Wednesday, August 10, 2016

Book Review- Don't Call Me Inspirational: A Disabled Feminist Talks Back

     As they always say, third time's the charm, right?!

      When I decided to write this review, it was shortly before my second time reading this book. And I have to say, maybe I just read it too quickly the first time. I couldn't get into it.  A sporadic mix of stories about a woman's life who is neither of my locale nor my generation. The end made me smile at times, but as a journalist, none of  the narrative made sense. It wasn't chronological. Maybe that was my problem. But that was the point.

     Harilyn Rousso's memoir, Don't Call Me Inspirational: A Disabled Feminist Talks Back,  is not full of the funny, relatable stories  of not being able to put pants on, or of kids laughing at you, it is more philosophical and introspective than that. I only started to realize what each of these vignettes the other people of the story when I reread it for the third time starting last week.

      I think what  struck me is that this is a book about a person who largely was not comfortable with  herself. Why would you write a book intended to relate to other people when you as a person were having a hard time figuring this out? Well,  as I said, that is part of the mystery of this book when you read it again.

     The second time around, I read it as a disability studies analysis, and the distinct parts began to emerge. The chapter about looking at yourself walking in the mirror. The one about painting your "bad" hand for the first time. I began to see the empowerment from these seemingly negative perceptions of oneself.

     Last week, when I read this book for the third time,  I realized that the relatability  only comes from having  experienced a routine that has been completely disheveled or fallen apart. You have to have this experience of chaos before you find the organization in this book to be relevant at all. Looking back on how positive  my view of my formative experiences of myself is compared to an older generation's fear of difference makes me realize how fortunate I am, but someone else had to fall apart first.

      For all the seeming chaos in this book, I don't want to say that it is not relevant because it is clear that  this format is entirely on purpose. And for all the self-doubt that Rousso expresses in these pages, I cannot say that this book is negative, although it may seem that way on first read.  From the great fortune I had of  meeting her a couple years ago, I can say that she is a lovely woman, very engaging to talk to.  not wanting to be motivational, or dare I say-- the I word --  she is very much real, and speaks with a purpose. And in all those awkward movements and strained muscle features with which she finds fault, I see someone else. I see me, here in all my spastic glory. And behind those loud and breathy sentences, I have something to say. And so does she.

I can't wait to see how my thoughts on this book evolve throughout the next phase of my life. Definitely recommended and a great addition to any disability studies library!

Saturday, August 6, 2016

Double or No Double?

     A while back, I was reading honors profiles similar to these and feeling grossly inadequate. Not only was I not curing cancer or working for NASA, I was only about to have ONE degree with ONE minor specialty. At the time, this post had a different intention, as I was contemplating whether to pursue a double degree so I could work as a French interpreter/translator for the Department of State before I got that dream job as an international correspondent.

At the time, I didn't want to pay $150 for the placement exam. Now, ONE year later, here I am wishing I had $150 to contribute to my life goals. In retrospect, I probably spent it on too many sandwiches!

However, now, as I consider my options in a completely different field-- education, I am once again in a situation where the master's degree is considered the new bachelor's, it is even harder to realize your dream in a chosen field. Let's be real, I'm surprised that my major is not one of the 10 biggest wastes of time this year, according to Forbes, but if we were being honest, these descriptions are accurate.

In a field where you need relentless experience to get in the door, it may not be surprising that the unemployment rate for current journalism grads is listed at as much as 8.2%. My first thought is to wonder what form(s) of journalism count here. The good news, I guess, is that it is not by any means the worst ( sorry, psych majors!)

 Add on top of that the fact that approximately 73% of working age people with disabilities are unemployed, according to an analysis of the 2012 American Communities Survey. I can only imagine what conclusions would be drawn with more recent statistics. This could be due to actual physical and attitudinal barriers to accessibility, but more likely it is due to disincentives to obtaining government health care, which may be the only option for individuals who need a lot of medical procedures and equipment, meaning tha many individuals with disabilities live in poverty. While some states now provide a solution to the Medicaid problem, this is by no means a universal standard. In addition, there are now three states that allow the development of ABLE accounts for non-residents. You can learn more about that on the official website.

But let's get back to me  for a second! Get a degree, they said. It will be fiun, they said. Oh wait, just kidding! Get a master's, now THAT will be the ticket! The thing is, I know how completely fortunate I was last time around, and yet here I am thinking about having my foot in a completely different door, so  to speak. This year off has been very  challenging but very necessary. I look at it as a blessing, and through that, I have been able to pursue volunteer opportunities working with children in the spare time I have had, and I absolutely love it!

 Now, if I had a dollar for every time somebody said I should  teach children, I wouldn't need to sitting here writing this. At first, I didn't think  I would have the patience, and most days, I still don't. But, what continues to scare me more is the variability of how well  accommodations and models of “diversity”  such as myself would be integrated into the teaching industry (or not!). Not to mention  that as far as  diversity goes, my wheelchair is probably the only thing I have going for me, but that's another post for  another day.

 I am sitting here thinking about how much it would really matter, because there is this lovely article that I read a couple years back.  Yes, you read that right, almost 2/3 of those people with disabilities had  to drop out, and  I was  almost one of them despite my hard work, and the  immense amount of luck that had nothing to do with it. And I will still say that my experience was much better than most.

 By and large, I had very positive inclusion experiences within the school system. There was some hesitation at first, but once I proved that I could mesh within the mainstream, it was more a problem of “how do we get her the assistance she needs?” Which is still a problem, because I'm still here. But now, there's no IEP, no 504, and barely an ADA to protect me, as most buildings are” historical” or “would  require additional maintenance costs.” There is only a Fair Labor Standards Act, which I am still trying desperately to understand, and which, if you ask me, isn't very fair at all. How do  you tell kids that it's okay for even the teacher to need  a little help sometimes? And what on earth am I supposed to do if my wheelchair breaks down??

 So yes, I know that my degree is and was supposed to be the ticket to my future. And yes, every second I know that I am still just steps (wheels?) away from being a statistic, another one  who couldn't make it in the face of systemic ableism. Yes, I know I picked the worst combination possible. No, it shouldn't matter whether I check  that little  disclosure box on my job application, but yes, it does anyway, whether I like it or not. Yes, my disability is a source of perspective and enlightenment. No, I'm not just a liability.

 Yes, I know I'm screwed. No, I'm not quitting!