Who?

Pop quiz time everyone. Sharpen those pencils – or maybe in this day and age it’s create a new note on your phone – and get ready to answer a few simple questions.
1. If you needed a ride home from the emergency room, who would you call?
2. You need to move a piece of furniture that’s too heavy for you alone. Who can you ask?
3. It’s Thanksgiving and you aren’t cooking for anyone. Who will include you in their celebration?
4. You are sick with the MartianDeathFlu. Who will offer to come over and make you something to eat?
5. Who will go out of their way to come give you a hug on a bad day?
Now, on your list, please remove anyone in your family or that you are dating. Take off coworkers as well. Who does that leave you with?
One of the consistent problems plaguing my life is a lack of someone to help and support me. Whether the pragmatic or the more intangible of emotional support, I seem to routinely have no answers to the above questions.
For example, last time I needed to move my couch, I had to open the sofa bed up, pull out the mattress, put the frame back together, move the couch and then reassemble everything. Yes, it worked. No, it wasn’t any fun at all. I suspect the dog was plotting how to have me assessed for insanity.
Why, though, did I ask you to remove family, significant others and coworkers from your answers?
Many people with disabilities have complicated, difficult relationships with their families and are not close in the way necessary to receive ongoing support. While they might need the love and support relatives can give, the mere fact of dependency frames the entire situation in parent-child terms for that is the model we all know – the person needing care is the child and the person offering is the parent. Even when it comes to elderly family members, the relationship between those individuals and their children is often discussed in terms of the parent “becoming” the child. We don’t have a language or paradigm that allows for needing another family member in an ongoing, dependency based way that does not reflect an adult child relationship. and who wants to be a grown up having to accept the limitations of childhood in order to get their needs met?
People with disabilities are often more socially isolated than their TAB counterparts, find dating to be more challenging and more frequently are single as opposed to part of a romantic relationship. This means we are less likely to have significant others or spouses to lend a helping hand.
With the unemployment rate of people with disabilities at something between 60 and 75%, coworkers are often not a part of our personal landscape either.
This leaves us with our friends to turn to in times of need. In our twenties and early thirties, when many people live more care-free lives, reliance upon friends works great. They need you. You need them. Everyone gets their needs met. It’s not perfect, but things tend to work out most of the time.
Then TABs begin to pair off, acquire mortgages and kids and car payments and friends become the parents of your kid’s friends, people you share a meal or glass of wine with and those you keep tabs on via Facebook. Meanwhile people with disabilities have often not shifted to these life “milestones” and still need the friendships that sustained us in our twenties. We haven’t been able to replace those relationships with others and this creates a big void that often becomes evident logistically yet probably impacts the individual most on an emotional level. After all, you can go through an insane process to move your ridiculously heavy couch, but who will come give you that hug?

Comic

One of my long-time readers sometimes comes across comics with a disability theme.  He then types up a description for me.  As soon as I read this one, I knew it had to immediately go  up here.  among other things, it is an awesome example of “You may think I’m drowning, but this is the way I swim.”

            The artist is Fábio Coala and I think more of his work can be found at

http://coala-io.deviantart.com/

            The actual comic is at

http://i.imgur.com/MY2Ys.jpg

                The description is as follows:

               In the first panel, a boy with brownish skin and spiky brown hair under a green ball cap is holding a large cardboard box with air holes.  He asks “What is it mom?”  From off panel a voice says: “Open it!”

               In the second panel, the box is open.  A yellow puppy is emerging.  It’s right front leg is missing.  From off panel the boy says “A puppy!”

               In the third panel the boy is holding the puppy looking dismayed.  He says: “Wait… What kind of a puppy doesn’t have a leg?!”  The puppy is gleefully wagging it’s tail.

               In the fourth panel the boy is storming off with a tear in his eye.  He shouts “What’s the point of a sick dog?  This sucks!  I don’t want no puppy.  I don’t want anything.  I hate you!”  The puppy looks at him confused.  There’s a pink ball next to it.

               In the fifth panel, the puppy looks at the ball and wags his tail.

               In the sixth panel, the puppy takes the ball in its mouth.

               In the seventh panel, the puppy is running with the ball in its mouth.

               In the eighth panel, the puppy falls over with a “pof!”.  The ball slips out.

               In the ninth panel, the puppy has retrieved the ball and is running again.

               In the tenth panel, the puppy approaches the boy who’s playing a video game.

               In the eleventh panel, the puppy is looking at the boy while holding the ball and wagging its tail.  The boy turns and says “You’re not like the other dogs…  You can’t play.  You’re only there for people to feel sorry for you.  Don’t pretend you’re happy.”

               In the twelfth panel, the boy takes the ball and says “Gimmie that.  Now catch… and get out of here.”  The puppy looks elated.

               In the thirteenth panel he throws the ball.

               In the fourteenth panel the puppy is running.

               In the fifteenth it falls over again with another “Pof”.

               In the sixteenth, the boy says sadly, tears in his eyes, “See, you’re not like the others.”

               In the seventeenth, the dog regains its footing.

               In the eighteenth, it lunges and latches onto the ball, happy again.

               In the nineteenth, the boy smiles, tears still in his eyes.

               In the twentieth, he wipes away a tear and smiling says “It’s no use, right?  You don’t care about your leg… You’re happy anyway…”

               In the twenty first, the puppy looks at its missing leg and raises an ear in confusion.

               In the twenty second, it returns to looking at the boy with absolute joy.

               In the twenty third, we finally see the boy’s full body.  His own right leg is amputated above the knee.  He walks on crutches saying “OK, let’s play outside.”  The puppy runs ahead of him barking.

Don’t Watch!

 

There are times when I stand on the sidewalk, Camille Guide Dog Extraordinaire at my side, trying to figure out some navigational complication. Often I’m simply trying to “hear” what’s going on. Passers by may stop and ask or offer assistance — an appreciated gesture that I sometimes accept gratefully. Unfortunately, a response from me of “No thanks. I’m good,” can result in problems.

People step back and *watch*.

I know this because when I get past the challenge, they might comment, my ears may pick up a slight sound or I can feel the weight of their eyes upon me.

So, there I am, trying to sort out a mobility issue, while somebody hovers. It’s creepy. It’s annoying. It’s rude. And, if I were sighted, it wouldn’t be happening.

Most significantly, it shows a profound disrespect for my own judgment for if I’ve said I can take care of it, standing to watch implies at least a suspicion I am wrong. Well, either that or some over-the-top fascination with how I function as if I’m an exhibit at the zoo. (I am not an animal in the monkey house. Promise.)

There is one crucial fact that might escape the average non-disabled person. Taking time to listen to my surroundings allows me to deal with situations as I study them with my ears. I may be working through a set of circumstances that challenge my skills and if people always save my butt, I will never learn how. Saying “No thanks,” can be me granting myself a learning opportunity. Those are good for me, right?

I suspect people’s motivation to stand and observe usually comes from a good place. They don’t want me to get hurt. While I value the goal of keeping me in one piece, I still cannot stomach it when someone lingers. It’s yucky. And did I mention creepy?

So, I am declaring anyone who walks away when I say, “No thanks,” off the hook if I turn out to be wrong and break a body part. Absolution is yours.

But I know this won’t be enough. Here’s a way to handle it that helps the non-disabled person feel good about leaving whilst demonstrating respect for me.

Tell me your concern while acknowledging your ignorance and taking responsibility for the discomfort you feel with moving on. “I don’t know much about how blind people navigate. I don’t know how you would handle x situation which is making me unreasonably concerned.”

Make it your fault – because it basically is – and see what happens. Since nobody has ever done this to me, I can’t guarantee the response. I can say that it would feel better than the hovering. Much better.

I encourage you to go forth and try it, then come back and leave a comment. I need data.