Wednesday, June 12, 2013

Don't be a Dick*

Being a bit of a geek, it shouldn't be surprising that I adhere to Wheaton's Law.  For those that aren't familiar with this little bit of memedom, Wil Wheaton (of Star Trek: TNG fame) in his keynote speech at the Penny Arcade Expo (PAX) in 2007, stressed the importance of sportsmanship, in this case referring to online gaming.  It culminated into one phrase: "don't be a dick".  Not surprisingly, this little idiom has taken on a life of it's own;  Wil's Birthday, July 29, is now "Don't be a Dick Day".  It's premise is pretty simple;  don't be a dick.  In the last little while, quite a few things have come across my path that have me saying "what a dick!" and wishing that people would start applying Wheaton's Law to and in the disability community.

Wheaton's Law.  There are shirts.
For example, service animals are becoming more common and being used for many different things these days.  However, you would be surprised at the amount of discrimination that still occurs.  This story happened a few years ago in Toronto, where a medal winning athlete was denied entry into a gas station due to her seeing-eye dog.   Not all service dogs are German Shepherds or Labrador retrievers or even seeing-eye dogs for that matter;  my friend M. has a service dog, a darling pile of fluff named Edgar.  He is a miniature Yorkshire terrier and helps her with her symptoms of Post Traumatic Stress Disorder.  Edgar is fully certified and although he doesn't wear a vest (he is too small), M. carries all his certification with her everywhere that they go.

The other day, she went into a nail salon/spa that she had frequented for years.  While lying quietly on a table for a facial treatment, she was accosted by a very hostile and threatening woman.  The woman bent down to speak to M. face to face and loudly objected to Edgar's presence stating that he "would get the place shut down by the health department".  My friend, once she had regained her composure (and been able to stave off symptoms, thanks to Edgar's intervention), attempted to explain her service dog's role to the woman, even going so far as to pull out his documentation. M attempted to show his certification again a few minutes later and was greeted with more ignorance, conversation bordering on verbal abuse and most sad of all, silence from the shop's owners.

My friend will never go there again.  What was once a place of peace, comfort and happy memories for her and her daughters is no longer "safe" (for her or Edgar).  It pains me to hear this as this is not the first time that this has happened to her.  This year even.  M. has been humiliated by people demanding to know her reason for her PTSD and what service Edgar could possibly provide.  My friend is not about to discuss the horrific physical, mental and sexual abuse that she endured at the hands of her own parents, especially to complete strangers. Yet, people feel they have the right to ask this of her, despite the documentation.

So, when it comes to service animals, don't be a dick.  Not every service animal is a large dog or even a dog, for that matter (I have seen pot bellied pigs and small horses as well).  You do not have the right to demand an explanation other than the animal's certification.  You also don't get to pass judgement on what you believe is a proper application of such an animal.  Not every disability is visible as well;  what may not be apparent to you may be quite debilitating to another.

I don't consider myself to be a "mommy blogger" (although I do know quite a few successful ones).  I'm not confident enough to consider myself a writer, so I tend to refer to myself as just a blogger.  Before the twins, I was was happy to prattle on about my garden and random things that popped up in my life [read:  a forum to entertain my family and friends and show my photography]. That changed with Wyatt's prenatal diagnosis and the writing that came out of that which would eventually became Down Wit Dat.  As I found out new things, I shared them with my family and friends.  That group has grown over time;  I've never claimed to be an expert.  I'm just another advocate (and not a "mommy advocate" either).

In my travels, I talk to a lot of other bloggers.  Some are very successful, some are commercial and do this for money or promotion, some blog for advocacy and some just do it for a love of writing.  There's a degree of camaraderie, sure, but at least in the "disability communities", there is a lot of animosity as well.  We all have a voice, we all have struggles.  We all have learning needs and different personalities and let's face it, I for one am not everyone's cup of tea.  However, there's this trend to discourage and disparage "younger" (less experienced, with younger aged children) bloggers and advocates and it's kinda disturbing.  I'm hearing "too angry" and "too young" and "too inexperienced" and "too disrespectful" and a whole other bunch of wacky stuff.  I can't speak for anyone other than myself, but "too angry"  is not exactly what is happening over here at the Logan Homestead.  Even when I'm being particularly passionate about something, I'm hardly angry to the point of uncontrollably shaking my fist to the sky (I have been accused of that one, actually). I don't have the energy for that level of unbridled emotion, frankly.

Besides, I'm Canadian.  We don't do a lot of that here.  We're more apt to write a polite letter to our riding's Member of Parliament, to ask them to consider submitting a well thought out and sober article of legislation.  When it comes to the blogosphere, we all have something to offer, even if we all don't agree.  I for one, want to hear the experiences of those that have gone before.  I want to hear what went right and what went wrong.  Not so that I can tell you that I think you did things incorrectly, but so that I can learn from it and make my son's experience better (and improve it even more for the kids that come after him). 

So, bloggers ("Mommy" or otherwise), don't be dicks.  Personal struggle is not a contest.  No one wins in the end for time served. There is no "rank", this is not the military.  I may not know exactly what year 15 looks like with a child with DS, but I do know what I want it to look like.  You probably don't know what it is like with twins where only one of them has DS, either... just as I don't know what it is like to be an adoptive parent or a same-sex parent or any other kind of parent other than myself.  We're all trying to make a world that accepts those that are different than most as a matter of course.  When we waste our energy on each other needlessly, we just look like, well, a bunch of dicks.

My last stop on this "Don't be a dick" train is person first language.  I was a big believer in PFL since I encountered it in 1995 in one of my nursing classes.  It's not rocket science:  people are more than their conditions.  Mr Smith may have schizophrenia but he is more than simply "a schizophrenic".  Such reference is dehumanizing.  Calling my son a "Downs" or "Downy" or any other permutation, other than "he has Down syndrome" is dehumanizing.  

The exception to this lies with the self advocate.  Through the words of a few bloggers in the autism community that I respect greatly, I have gained an understanding into the continued use of "autistic" as opposed to "person with autism".  As it was explained to me, by a person who is autistic, it wires a person different;  to remove the processing disorder would remove a great part of the self.  Although I probably would have disagreed in theory, I respect their opinion and through them I have gained insight.  Those possessing the characteristics in question get to determine the language used to describe those characteristics.

Comparing Down syndrome to ASD is like comparing apples and pelicans anyway. 

The current consensus of the self advocates in the Down syndrome community is to use person first language and it is to that I will defer.  So please, don't be a dick.  Down syndrome is not an adjective.  The words you choose to describe people shape the perceptions of those around you.  We cannot create a world where differences are accepted and even celebrated if we denigrate people through the words we use to describe them.  It's not a matter of your "rights" to "free speech", it's a matter of recognizing another's humanity.

So there you have it.  When it comes to the world of "disability", invoke Wheaton's Law.  Don't be a dick.  Make every day "don't be a dick day".

Speaking as a someone who loves someone with a learning disorder, we already have enough of that to deal with.

------
*Unless your name is Richard.

13 comments :

  1. Having friends & family that live with all the extra challenges that come from a "silent disability", I so appreciate your highlighted this problem. Thank you for again being a voice in the darkness...

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    1. You are welcome. Thank you for the comment.

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  2. You always say just the best things.

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    1. Thank you Rachel for your kind words.

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  3. Another awesome post, you are a rock star.

    SO, to add my 2 cents, I get the same feeling - on the blog front - but opposite reason, My son is an adult with Down syndrome, so I'm not fighting the New fight, I'm not part of the Pioneering generation (forget the last 23 years, right?) Why would I start Now, for cryin' out loud?
    Sigh. But here we are.

    I'm happy to have found you before I began my own blog because you are inspiring. Honestly.

    And I like your style:)

    - Mardra

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    1. Thank you very much Mardra. There's room for all of us as there are so many different facets to this life.

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  4. so good. i recently read a guest post on another blog by a mom of a thing adult with Ds. she went on about"pulling rank" on the parents of younger children. i just could not get it. i understand that we are all in different places but give me a break. As advocates part if our role is to support and celebrate differences. with so much animosity rolling around it fets awfully difficult to be persuasive.

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  5. This is such a great post.

    I seem to be encountering the Person-First debate a lot lately. While I don't prefer it myself, I keep trying to stress to people that it's important to respect individual preference on this issue...insisting that my preference should be right for someone else is not only disrespectful, it's just rude.

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