We started this blog to bring awareness to Usher Syndrome, mostly in an effort to prepare the world for Rebecca, to tell as many people about her and her syndrome as possible to help provide her with a future of inclusion.  We try to keep away from blogging about the negative side of raising a child with a complex medical condition but yesterday we came across something that crushed us, another realization that the world is just simply not ready for her.  Our Job is to advocate for our kids and if the following story changes the mindset of just a couple of people, then we have done our job:

In a rare event on a Saturday night, let alone any night, the kids were settled in before 9:00pm.  Becca hadn’t taken a nap so her nightly routine of time with mom reading books and singing songs went from the average hour to around twenty minutes, as Rebecca nodded off only into book number two.  Reagan was also settled in for the night so we had to figure out what to do with this windfall of free time.  We decided to sit down and watch a movie, one that at least made us feel like adults again and was not some animated flick with a terrible sound track.  I scanned the Verizon rentals and  found the movie “Gringo” and thought it could be a good one.  It was a marginally entertaining movie with a good cast including Charlize Theron.  She was playing a cut throat business woman in a medical marijuana company.  She was also in a romantic relationship with her bushiness partner played by Richard Rusk.  Seeing that this was a pretty edgy crime comedy, Richard’s character was also in a romantic relationship with another woman played by Thandine Newton.  In one scene Charlize Theron’s character interrupted Richard with this other woman and asked who she was and when she got no response she sarcastically said “oh, a deaf girl” and made an ignorant imitation of a deaf person.  Here is the scene:

I immediately looked to Beth who was sitting to my left and knew instantly how much this hurt her because I knew how much it hurt me.  To finally get some time to sit down and watch a movie only to have everything that you are working so hard towards slap you in the face in a ten second movie clip, this was not how we were expecting the night to go.  It was supposed to be a time to forget about the numerous weekly appointments to work on Rebecca’s speech, and the tireless work that goes into raising a child with extra needs.  Beth needed this, she goes a hundred miles an hour every day making sure Reagan and Rebecca have everything they need and in Rebecca’s case that means numerous therapy appointments and doctors visits (its a rare week when there are not five or more).  Yet some film director thought they would get a chuckle or laugh from the audience by adding an ignorant and unnecessary portrayal of their perception of a deaf person.  It added absolutely nothing to the film, just a “joke” that was intended to make us laugh.  For us however it turned the evening into another night of worry and uncertainty about Rebecca’s future.  We simply want Rebecca to be included, not to feel that she is not part of our society.  A big part of feeling included is to feel safe but how could she, how could any deaf person feel safe and have a sense of belonging when this stuff is acceptable in film.  I’m not saying all out censorship is needed here, but we do need to change the narrative.  There are many roles that actors would not play or topics that they would not touch, it’s truly disappointing that this is not one of them.  Its 2018 people, get with the program.

We are proud of who Rebecca is and how she sounds, it makes her unique and for the most part society accepts and celebrates her differences. But when society and cultures are influenced by the creative arts, including film, its hard not to feel like we are fighting an uphill battle when we run into stuff like this.  We will keep climbing though and hope that someday we truly can all feel like we are part of one big culture, the human culture where we focus on and celebrate the attributes we share vs highlighting the things that are different about us.

This is what a deaf person sounds like and we could not be prouder!!