Thursday, April 14, 2011

Special Manners 101- You may not see it, but its there.

~~ When you are someone with disabilities or are the caregiver of one, you  quickly learn a few simple facts. Not everyone understands simple common courtesies. So as we blog and I think of things I'll include them here. I would love to hear your thoughts and solutions as well. ~~

Special Manners #102

I wasn't going to get in the habit of repeating the Special Feature parts of my blog, one after another, but recent personal moments have shown the need for this one. Really the topic I'm about to cover is a no brainer in my world and one many folks (I thought) already knew. I could be wrong. *shrug*

If you have an ear ache and didn't show pain on your face, no one would know unless you said something. If your leg was cramping and you limped a little, no one could know how bad it hurt unless they have had that cramp themselves. They may have heard of it but that's not the same as feeling it.
So here's the thing... They can't tell you not to take pain pills for the ear ache, because they really can't feel how bad it hurts. They shouldn't tell you to just walk it off if they aren't aware of your injury. 

Apply the same kind of logical thinking to disabilities and illnesses that are there but not in your face visible.  You may be able to see a few mannerisms, a slight tell-tale sign like in a walk or the way someone speaks, or they may look like they have nothing going on behind their eyes but over all you really can't judge the book by the cover.

Just because you see the child walking today doesn't mean that they are faking it when you see them in a wheelchair next week. Just because the Autistic child seems to be beyond our reach, doesn't mean they don't hear and process the cruel words your child says as they point and laugh. You can't see the lack of sleep a parent has when their child has a seizure that makes them so weak that they have trouble breathing. You don't know how hard it is for a mom to smile when depression is dragging them into the darkness.

The Manner: Your place is not to judge another by what you think you see or know, but to accept them for who and how they are. They don't have to fit into your ideal vision, only fit into their world as best as they can. Enjoy them for who they are. 

Watch Carly and see what can be hidden behind the cover of a book. She spent years locked behind Autism's walls but when she came through there was a person no one, even those close to her, could imagine. After you watch it, think about what you would have thought if you had been a friend of the family, if you saw her in a store, and if you had been her parent. Think about how you would have treated them, or how you would have reacted to that treatment.
My son was recently given an order for a wheelchair. It's main purpose is to get him around more trying situations. We will use if when we shop, when we will be gone from home for long periods that may tire him to easily, when he has a seizure that leaves him with Jello limbs. I will use it after the procedures that leave him unable to manage things.

Because he has days that are golden, where he can run and play just a little behind the others, not everyone sees the need for such things. They don't see him at his worst. They think he is babied or lazy or some other such nonsense. And it hurts more then just his parents to hear their judgements. His siblings and even himself, are affected by that ignorance.

I know of a woman who makes those around her smile with her humor and music. She has struggled forever with depression and it's toll on her life and family. It's hard to give your all to your family when the world seems like a place you would rather not be in. She is belittled for her struggle yet has overcome so much to raise her family up into almost adults. She's a beautiful person with a quick wit and a loyalty that knows no bounds. If only people would take the time to see past her darkness, they would know such wonderful gifts.

Here's what you do... remember to that time when that person pointed those hate filled fingers at you. Were you fat, ugly, too slow in gym class, or have glasses? Remember how you felt. Remember the hurt and the helplessness you felt? Now think of the folks we've talked about here. How will you treat them next time you see them in the store, when you pass them in the hall, when your child wants to play with theirs?

Know that there is so much more to a person who has a disability then the disability. They are people who smile, laugh, cry, and feel alone. And remember that while you may not see their pain or condition, it doesn't mean it isn't there or isn't real.... you have no idea what they deal with when you aren't there staring.

I close today's lecture by saying I'm sorry that it turned into a lecture. This one was born of my own pain and I know that. But if I am silent then no one will know to stop and think before passing up on some really good people based on intolerance, misconceptions and pure ignorance. 

I will try to add smiles to the next time we meet... was the tea good? Today's was mint. Be well and find reasons to smile often.


  1. Beautiful, beautiful beautiful. No need to apologize for anything, you've given an important lesson that too few people have learned and need to. Bless you and your sweet sweet boy.

    I always had bad knees growing up, when I was in college I had gotten hurt and my leg was pretty wrecked up for a while. I was given a special parking permit. Even after I no longer needed crutches or a big bulky brace, it was still tough to walk long distances and the school's buildings were very far away from the regular parking lots so I still used my valid permit for a while. One day some nasty lady saw me get out of my car (and I happened to be having a tougher than usual pain day as these things flare up sometimes so I was in no mood) and screamed in my face, "What's YOUR handicap?!?" I happened to also be wearing very dark prescription sunglasses that day so I screamed back, "I'm blind, B____!" since she'd just seen me driving a car. LOL Off-topic, I know, but I'm hoping I got a half a smile out of you with my recollection of surliness in the face of ignorance. ;)
    You know my medical problems that I live with know & the kind of pain that infuses my entire existence. It doesn't show on the outside, I've learned to force a smile so I don't depress those around me, and of course that bites me in my @$$ because people tend to not believe that there is anything 'wrong' with me. Some days are much worse than others, but if I mention to those closest to me that I am in a lot of pain and unable to do certain things "today", I am usually rewarded with an eyeroll accompanied by a heavy sigh and Oh you're always in pain, big deal" or something to that effect. I would not wish my condition on anybody, but some days I'd like to see how they'd fare if they had to live even an hour in this broken thing I call my body.
    Crap, sorry for the ranty-poo. This is what happens when I read a post that reaches me in the deepest places of my heart.
    Love you love you love you! My fondest wish is for you and your sweet boy to have more joy than anyone could possibly imagine and a whole bunch of sunny happy pain free healthy days. I want more than anything for you and your family to receive the greatest miracles that are possibly imaginable. I honestly don't know of anyone who deserves that more than you and the people who hold your beautiful heart. (((hugs)))

  2. MJ.... I have used that um.... sarcasm on a few deserving folks... I had a lady ask me once, years ago when I was in my early 20s, how old I was when my oldest son was born. I told her 12. I thought her face was going to fall off. I didn't bother to explain that my old son is also my step son. I still smile over that moment.

    You are right about THOSE kind of people.... if they could just live in our bodies, feel what we do, or be The Boys parent when he is so weak that he has to use his hand to hold up his own head, maybe... just maybe.. they would understand. They would never be the same anyway.

    ((((hugs)))) You know I love you to bits and allow you to rant away (um which is why I don't post about politics *snicker* you would beat me hands down)

    May we both see more sun then clouds. hmmm maybe I should use a few of your Irish quotes next blog around....

  3. Sometimes I want to you my handicap parking permit but I am afraid of the stigma. I have arthritis and fibromyalgia, plus sciatica and scoliosis. All these are hidden handicaps. It's ashamed how people we don't know make us afraid to use things we need or just be ourselves.


  4. April... No one should make a person feel less because they have a disability or are different. Tolerance should be one of the lessons parents teach their children but often forget.

    Besides, who's business is it WHY you are allowed to park there? People need to mind their own cars.

    "Well meaning" family members drive me nuts with their half baked thoughts.... about kids they NEVER spend time with.

    (((gentle hugs)))

  5. :) I wish this was not a need to share...
    I Learned it first at 8... and many times since and.. STILL Find it comming into my mind to remember this... AND Put it into action... And keep simpthy to a equal level to that which all humens have to live Through...


I welcome your thoughts if they are shared with respect and that you understand that we may not agree but we can still share and exchange ideas.