Thursday, May 7, 2020

We are all disabled


   “Ido Kedar, a 23-year-old autistic author and student who lives in West Hills, had no way to communicate until he was 7 and started using a letter board. Kedar said in an email that ‘I laugh thinking that finally my autism is an advantage in life.’
   “‘Yes, my many years being cut off from others makes me used to it, though I can’t say I like it,’ Kedar wrote, explaining that those experiences had made him introverted. As an introvert, ‘we need fewer people in our day,’ he said, ‘but we still need people.’”
   I can relate. 
   The above quote is from an article that appeared this week in the Los Angeles Times.  It is about adults with autism, like Kedar.  I don’t have autism, but, as I said, I can relate to much of what the article says. 
   What the article says basically is that the way we are all feeling now during this pandemic – anxious, isolated, out of sorts, at a loss – is the way many with autism feel all the time.  As one expert says in the article, “All human beings benefit from predictability in their lives. People on the [autism} spectrum crave it because there are so many more stressors in their lives.”
   As I said, I don’t have autism, but there have been plenty of times when I have wondered if I’m a bit autistic or when I feel a bit autistic.  And this isn’t just because I have a communication disability, like Kedar.  (I too have used a letter board and other communication devices.) But the communication disability is no doubt a big part of why I feel this way.  Because speaking, and understanding my speech, is difficult, I tend to find it easier to not speak, to shy away, to retreat. 
   But it goes beyond that. Partly because of this and partly because I rely on attendants who are used to a schedule, a routine, and probably partly due to other factors that I don’t fully understand or appreciate, I am very set in my ways.  When these ways are upset, disturbed, I get inordinately upset. 
   I don’t like this about myself.  Not only am I ashamed of it, but I think it has caused me to miss out on a lot and perhaps, even, to drive friends away.  For example, when I plan to write during the morning, or even just read the paper during the afternoon, I am often not very friendly, not very welcoming, when a friend drops by to chat.  Again, I’m sure my speech disability has something to do with this, but there’s also a inflexibility, a rigidity that is unattractive and costly. 
   Separately, but not completely separately, I have realized that I’m having difficulty with Zoom and other video calls.  For a while, they were cool and fun, but now, although they are still amazing and far better than not having them, they are really, really tiring.  No doubt my speech disability is more evident, although I really like the chat option.  It is also, perhaps more importantly,  difficult, straining, to see and interact with people in real time and not have them there, not be with them.  I agree with all the experts I have read who say that when it comes to Zoom sessions, shorter is better.  
   This is also reflected in the article on people with autism:
   “Maxfield Sparrow, writing in reaction to an article  about people feeling drained as they try to read faces on video calls,  points out that ‘we Autists live with these discomforts all our lives.’
   And Sparrow adds: ‘If you are socially disoriented by Zoom and desperate for the pandemic to be over so you can return to comfortable, easy socializing, please lean into that feeling and remember it later.’”
   Yes, I relate to all of this, as I think we all do in this time of coronavirus.  We are all disabled to some extent, all a bit austistic in one way or another. 
   Again from the Los Angeles Times article, “’People with disabilities are the experts in coping with social isolation,’ said [Hector} Ramirez, who {has autism and] is also a board member with Disability Rights California. ‘Not because we want to, but because we’ve had to.’”

1 comment:

  1. I was just going to google zoom and knew from the get go that it wasn't as easy to communicate rather than being there. Personally like you, I would see the disadvantages, and perhaps can wait to zoom over to have a chat. Yes, the talks are difficult but much easier to spell it out for my inability or as you say, disability to spell very fast and efficiently. I will continue to keep you in my heart and would like to resume our seeing one another, yet patience is something I will need to keep in mind, when it comes to seeing each other up close and friendly.

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