A different pain

 

   On Sunday, I had a choice.  I could go to the choir concert at 2 at Scripps College or the band concert at Pomona College at 3.

   I decided to go to the choir concert. 

   Before I had my spinal surgery, when I was able to zip all over in my wheelchair on my own all the time, I would have done both.  I would have gone to the choir concert, then head down to Pomona College where the college band was playing outdoors, probably due to COVID, and catch the remainder of its concert.  Even if it was indoors, I would have snuck in (the college concerts here are usually free)! Getting home from the theater where the choir concert was on my own is now a dicey proposition.   

   When my attendant dropped me off at the choir concert, he asked the usher what time the concert was over, so that he could let the attendant who came on a 3 when to pick me up, and the usher said 3. Okay.  So the attendant would be there at about 3:15. I would just wait, which was fine. 

   Perhaps the usher meant when the theater would be closing, because it turned out the concert was short and sweet, as they say, and I was outside at 2:40. I sat in the sun for a few minutes, then meandered around the pleasant music department complex to kill time.  It was a lovely day, but I was mad and frustrated. 

   It was warm, and the band concert was close enough for me to easily get to, but I had no way to tell my attendant where to pick me up or what time to expect me if I decided to head home on my own. I also could have had my attendant return at 2:45, leave the choir concert a bit early if it was indeed ending at 3 and be dropped off at the band concert. 

   Along with if not more than this coulda-woulda-shoulda frustration and anger, what I was really feeling, I noticed, was hurt. I was surprised at this and wondered what it was about.  I realized that it felt like something has been taken from me, something that was rightfully mine.  I felt like I was cheated, like I was robbed. 

   Indeed, I was.  The fact is, I have to admit, something has been taken from me, something that was rightfully mine or that I should have.  And that is the ability to do certain things, things that I used to be able to do. 

   These were all the more valuable, are all the more missed, because I learned how to do them despite of the considerable disability I already had. They are missed, because I earned them. 

   More than this, more than the abilities than I had gained and was taken, what was taken, what I missed, was my independence – which I had also achieved despite being disabled.  What was taken was my not needing a ride and having to tell someone where I am. 

   With all the physical pains I now contend with, this stings. 

Hearing our stories, in the right way

 

   I was thrilled to see Troy Kostur win the Supporting Actor Award at the Academy Awards on Sunday for his portrayal of the loving but tough deaf father and fisherman who, along with his deaf wife and deaf son, relies on his hearing daughter for communication in the heart-warming film, CODA (an acronym from Child of Deaf Adults), which went on to win the Best Picture award.  Not only was I delighted that he was the second deaf person to win an Oscar for acting (Marlee Matlin, who played the mother in CODA, was the first for her role in Children of a Lesser God) and that he so eloquently and movingly celebrated this, our moment” for the deaf, the disabled, the CODAs in his acceptance speech.  I also know that Kostur is an exceptional actor, having had the privilege of seeing him in several plays, mainly at the small Deaf West Theater in North Hollywood. I’ll never forget him yelling “Stella!” – raw and painful, impassioned and desperate – with his own strained voice (he signed all his other lines, interpreted by an actor who shadowed him, as with the other deaf actors in a creative innovation) as Stanley in Deaf West’s production of A Streetcar Named Desire. 

   There has been lots of cheering about this “our moment” – and rightfully so.  This is a moment worth cheering.  As Matlin, who insisted that the other deaf characters in CODA be played by deaf actors, said in a Los Angeles Times feature a few days after the Oscars, now is the time for deaf people, for disabled people to tell their stories and to be heard. 

   But what is the right story?  Before the Oscars, before all the cheering about Kostur’s and CODA’s wins, before the talk of this being “our moment,” there was grumbling. It was said that the film is unrealistic, that no deaf parents would rely so completely on a hearing child for communication, putting so much pressure, almost to a cruel extent, on the child.  What about all the services and devices available to the deaf? it was asked.  Why aren’t they mentioned or depicted in CODA? 

   I’m wondering what has happened to all these points and questions, which are perfectly valid and ones that should be dealt with.  Are they still being raised and I’m not hearing them amid all the cheering over the wins (not to mention all the talk about Will Smith’s “slap heard ‘round the world” that cast a pall over the whole affair)?

   Perhaps all this seems petty in light of the historic Oscar win.  Perhaps we shouldn’t squabble, but we should remember there are important questions.  Yes, Troy Kostur’s win is very much worth celebrating, and, yes, Matlin is right that it is time for us disabled folks to tell our stories to a broad audience, but it’s just as if not more important that these stories be told correctly and authentically.