Everybody has 2 cents

Big, huge disclaimer: Skip this if you’re tired of hearing this!  As always, I can only write about my experience.  Not only am I not other people, but I don’t have the theory of mind to be able to imagine how other people feel.  Forgive my apparent self-centeredness, but, well… I’m writing about MY experiences, and only mine.  Now…

Back in August, Rob Rummel-Hudson wrote this post on his blog.  He writes about a mother, who, looking for a brief respite, goes to see a movie and then, a few minutes in, that movie uses the r-word and a negative portrayal of Down syndrome.  And see, this mother has a child with Down syndrome.  So, her innocent evening is trashed by the movie’s attempt at humor.

And then, about a week later, Zoe wrote this post on her blog.  She expresses her… oh no, feelings word… discontent? frustration? anger?  I’m not sure!… at Rob’s taking the perspective of the parent.  Why should a parent be offended by such a comment, when no one really ever considered, “How would a person with Down syndrome feel?”  After all, some people with Down syndrome and intellectual disabilities like to laugh, like to see movies, and like edgy humor, too.

Me?… well, about that.

I find that I get quite a bit of attention, generally speaking.  When I go to church, for example, total strangers come up to me, sit beside me on my couch outside the main room where the service is, and chat with me (you know how I chat, right?).  And then, as for people who know I have autism… if I wince, they ask if I’m okay.  They ask if it’s too loud.  They ask if they’re talking too much.  If they need to slow down.  If I need a break.  If I want the lights off.

And, being that I don’t go to church without Mom… where is she?  She’s usually nearby, keeping half an eye on me, but being Mom and chatting it up with other people.  (Once or twice a month, Mom does greeting at church, so she has plenty of opportunities to chat!)  I can hear just about everything that goes on.  Sometimes, rarely, someone asks her how she is.  But no, “Are you stressed?  Are you worried?  Are you overworked?”  No, “Do you need a break?”  None of that.  And I worry about her, because while it feels like dozens, hundreds of people watch out for me, well, who’s watching out for her?

I believe that Rob’s scenario was basically on point.  Rob is a parent, so he considered the parents’ perspective.  Zoe is an adult on the spectrum, so she considered the affected person’s perspective.  This is only natural.

Perhaps (I could be entirely wrong) Zoe and other self-advocates believe that it is for us to discuss the offensiveness of such language as was used in the movie.  Not our parents or anyone else.

That leaves me feeling (here we go again with the feelings)… left out.  You see, I can say absolutely whatever I want from my keyboard.  But as soon as I’m out in the real world (unless I’m at a speaking engagement, where I seem to do quite well as it’s quiet, one person at a time, and I have my computer in front of me to sort out my thoughts), I can’t advocate.  I can’t understand what’s going on around me, so I am unable to speak out.  And really, there’s only one other person who I trust and want to advocate for me in these circumstances, and that’s my mom.  Who knows me better?  I can’t think of a single thing that my mom doesn’t know about me.  Who has spent more time with me?  (My cat is probably second in line on that).  Who is more familiar with what autism means for me, day to day, minute to minute?

My mom deserves so much recognition.  She deserves an award.  I wouldn’t be here without her, to be frank.  I’d be in some sort of state care home.

And so, Rob’s recognition of how the parent feels when her child with a disability is bashed… I think it’s valid.

But don’t run off on me, because I also think it’s necessary to consider how the people with disabilities feel.  It’s essential to recognize our humanity.  Now, I don’t get wrapped up in semantic battles on person-first language and all of that… I don’t think it’s necessary… but I do believe that we with ASD are far more like our fellow humans than we are different.

As I’ve written before, we exist not only on an autism spectrum but on a humanity spectrum.  Who is blue to call yellow unnecessary in the rainbow?  Who is red to tell purple it’s overkill?  Who is green to tell orange it’s overstepping its bounds?

Awareness.  Understanding.  Acceptance.

About these ads

14 thoughts on “Everybody has 2 cents

  1. Awesome post!
    I don’t know about you being in a state home (you’re just way too smart and thoughtful) but I do agree that your mom does deserve a lot of recognition.
    She’s clearly done a very good job and continues to do so.

    • Stuart, I don’t belong in such a home (does anyone?)… but without my mom these past few years, that’s where I’d be, both due to previous behavioral issues and lack of funds. Or, I wouldn’t be alive. I’m serious. Remember, I’m basically moderately autistic and not always verbal (when I am, my speaking goes only as far as autism, my cat, and “Mom brought me to the Disney Store!”). I seem a lot more “together” via typing ;)

  2. It’s so cool to see two people I follow, Stuart Duncan and you, come together on the same page. As a mom to two boys on the spectrum, give your mom an extra hug from me! It’s so nice to hear your regard and gratitude for what she does for you and with you! Thank you!

  3. Great post Lydia – as always.

    In my experience people always ask after the girls, but rarely ask how we parents are. It’s presumed that we’re OK, coping with what life throws at us and our girls and I’m afraid to say, on occasion in a low moment, I have snapped back at people that yes the girls are just fine and dandy – it’s us who are in a heap of physical and mental exhaustion, but we paint on our happy face and say what people want to hear. There are very few people who actually want to know and care about the answer to “How’s it going?”

    Scenario:

    “So, how’s it going?”

    “Oh, usual chaos”

    Person who knows and cares will feed me cake and coffee or offer to bring dinner over

    Most people laugh “Oh right” and carry on with their day

    It’s not just our autistic people who work hard at portraying what we percieve to be the required behaviour, at fitting in, us parents are pretty experienced at it too.

    (Keeping this short but I may have a blog article in the making!)

  4. What a wonderful post. You really do have a gift. I think it is a great way of recognising the need for everyone to listen more to people with Autism as well as parents … but recognising the value of both. I think your 2 cents are brillant!

  5. Lydia, this is a wonderful post. I really understand what you mean and how you feel about your Mom. Yes, it is rare for someone to ask after the parents/caregivers.

    You are your Mom are amazing :-)

    Mrs. E.

  6. Wonderful post, does a great job of filling in some of the missing information which helps explain the ‘disconnect’ between Zoe and Rob. You and your Mom are both amazing. Well done (an exhausted but proud autism and ADHD parent ).

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s