29 May 2011

disability etiquette 101.

walkin'. by Luna Soledad
walkin'., a photo by Luna Soledad on Flickr.
We’ve all heard it said, “It takes special people to do special things,” and while I tend to agree that not everyone in the world has what it takes to manage certain tasks, journeys, or responsibilities that many see as an impossible misfortune when outside looking into such lives of those who juggle everything life has thrown at them with the illusion of finesse, there are times when folks should just keep their mouths shut and maybe just offer a warm smile instead of some wise-sounding rhetoric... Often, this is a sentiment conveyed by well-meaning strangers when faced with the uncomfortable realization that they are in the presence of a parent, guardian, or care-giver of a person with special needs and feel the need to say something in lieu of, “You poor thing, I feel sorry for you.”

Yes, it’s true, unless you’re part of that inner circle of special populations, exceptional people if you will, (be it family, friend, fellow parent, teacher, therapist, or the like), such expressions, however well-meaning, come across as condescending in a manner not unlike rubbing salt in one’s wounds.

I personally do not need to be reminded of how “special” I am. I live it every day. And I can only imagine that other mothers who spend the bulk of their days having fun with G-tubes, catheters, braces, walkers, communication boards and devices, outrageous behaviors, attending IEP meetings, advocating for the rights of their loved one(s), meeting and communicating with a menagerie of doctors and specialists and teachers and therapists, learning medical shit they never wanted to know about, and wiping ass every single day after day, probably feel the same way. --I assure you, we totally get it.

That being said, I realize that most people don’t intend to be mean or rude (for those who do: go fuck yourselves) and can only act in ways in which their life experiences and / or education afford them. Therefore, I’ve compiled a little list of basic etiquette with regards to encounters with special populations for those nice folks on the outside with honorable intentions:

  • Don’t stare. --I would hope that this is self explanatory, but in case it’s not... staring at people disabled or not is in fact rude. You should teach your children this too, however, as a general rule, it’s not a child’s natural curiosity that bugs me so much as their parents... encourage your child to instead say hello, smile, or wave. And if they are curious about a wheelchair or such, allow them to ask; if they ask you within earshot, don’t drag them off, shush, or punish them... it’s how they learn that people with disabilities are indeed people too and everyone benefits from kindness.

  • Don’t ignore. --Many people feel uncomfortable when faced with a situation outside of their experience, even if that situation is meeting a person with a disability. Perfectly natural. But no one likes to be ignored. If my daughter waves at you, as she is prone to do, would it kill you to smile and wave back? She’s not asking for a loan or even a dinner invitation, just acknowledgment.

  • Never assume anything. --People are like fingerprints: each are special and unique. Disabilities are like fingerprints: each are special and unique. Just because a someone may have the characteristic appearances of someone with Downs Syndrome doesn’t mean the individual in front of you functions at the same level as that actor you saw in a TV show once (like actor Chris Burke). Just like regular people (not everyone is a PhD and not everyone can cook edible food), there is an enormous spectrum of varying abilities. In fact, people are most familiar with the term “spectrum” thanks to the public awareness of Autism; the autistic spectrum is a perfect example of extremes. There are persons with Autism who may be a bit quirky (who isn't?) but are amazingly gifted, highly intelligent productive members of society and there are those who cannot speak and live trapped in the darkness of their own worlds unable to dress themselves... even more rare and amazing are minds such as Kim Peek. Just like Autism, disabilities can be every bit as much of an enigmatic intellectual span. This includes issues such as ADD, ADHD, ODD, OCD, and a whole host of other fun stuff, all of which are real, legitimate, and can sometimes be just as debilitating.

  • But they look "normal". --See above.

  • If you feel inclined to speak, direct your conversation first at the person of interest before addressing the parent or caregiver. --It’s just common courtesy and though it’s not the case with my child, most people with disabilities, even intellectual ones, can speak and carry on a basic, albeit probably unconventional, conversation. And they appreciate the attention and exchange because unfortunately they are used to being ignored. It also makes Mom feel good because someone was thoughtful enough to make their kid’s day. Just don’t be disappointed or take it personally if the special person doesn’t outwardly acknowledge you back in a manner in which you are accustomed. Trust me, they noticed; they just may not be able to unlock what they need to access in order to show it.

  • Never underestimate. --I have had to learn this one myself, over and over again, with my own daughter and to this day, she continues to make a liar out of me (as well as many specialists!) should it dare be stated that she is unable to do something. Even for persons closest to an exceptional individual, who know their language, abilities, and behaviors best, it is impossible to know what is understood, unable, or merely defiance.

  • If you feel inclined to inquire, choose your words carefully. --For instance, rather than asking, “What’s wrong with her?” try instead, “What’s her diagnosis?” As a general rule of thumb, stop and think how you would feel if some random stranger walked up and said this to you about your child. Again, children are an exception... A child can only communicate with what vocabulary and communication skills they have acquired in their short little life-spans. When a child asks me why my daughter doesn’t speak or what’s wrong with her, I will happily stop whatever mad errand I am in the middle of, drop to a knee and explain as best I know how with all the patience of Saint Monica because that’s how they learn to become better world citizens. But as a perfectly functioning allegedly competent adult, if you ask me such an asinine question as “What’s wrong with her?” you can expect an equally rude and ridiculous response, such as, “Absolutely nothing; what’s wrong with you?”

  • Ask for help. --Most parents and caregivers don’t mind at all if you ask questions that help you to include their child and loved one. Perhaps they are deaf or do not speak and use sign language... I love when people ask me how to sign something to my daughter (though she can hear perfectly well I’m told; selective listening is another matter entirely) or if she needs assistance with a task... This shows you care.

Someone once told me that disability is not an "if" but a "when." Meaning, there will come a time in each of our lives when we are not capable of being independent to some degree, be it a broken bone, illness, old age, or dementia and will require the care and assistance of others in order to have our needs met... Think about that.

When all else fails, there is always The Golden Rule. Remember that one folks? It goes like this: “Do unto others as you would have done to you.” And by the way, that’s a good one to teach your kids too!

A public service announcement brought you to by yours truly...

"Special people were not born upon this earth to be tested, rather to serve as a litmus for humanity."

...Crystal J. De la Cruz, mother & advocate

1 comment:

  1. Excellent, I hate when I go into a shop with a family member or friend and the shop assistant immediately turns to them and asks "What does he need?" or "what would he like?", my friends turn around and say "Dunno, ask him"

    When it comes to children, there is an age limit, if they stare at me, if they are under 8 years old then I can understand I say "hello" or smile at them, anyone over age of 8 should know better as they most likely see a child at their school with special needs.

    I may try the next time someone asks "what's wrong with you?" I might say "Nothing, what's wrong with you?", I think it is an excellent idea.

    Well done, everything here is so true, we are not aliens we are just like everyone else just we need some extra help :).