Thursday, August 09, 2007

Hot Blooded

I wish I could give a wonderfully exciting report from our beach trip this past week. We were all hyped up about combining Joan and Jessie’s few remaining vacation days with my last summer show at the coast. Instead sales were dismal and the incredible stifling heat brought us home a day early. Even with air-conditioning one can only take so many 100-degree days in a foldout camper. We would’ve been much better off attending the art show in the North Carolina Mountains I did a year ago this past weekend when I camped just off the Blue Ridge Parkway.

Even with so many other artist’s families using the Myrtle Beach Craftsmen’s Classic as a vacation “write off” we didn’t really get to hang out with them other than at the show. Ben ended up having some major seizure activity the first two nights that left me and particularly Joan exhausted by the day’s end. I did have one really good day with Ben to myself. He and I hung out at the camper all day Monday while the ladies went shopping. The special treat came when I pulled the tooth that was obviously the source of the seizures and a great discomfort to him.

And of course when Ben attends shows I become so very aware of how different our lives are compared to the “norm.” Sunday Ben sat with me in the booth for most of the day. In fact that afternoon my friend Conni Togel and I had a lengthy conversation about human perception, which I’ve thought about quite a bit over the last few days.

As usual putting Ben in the booth was for the most part the equivalent of putting a wall up between the shoppers and us. I was pleasantly surprised at a few more folks than usual stopping in to chat with Ben. Of course Ben was full of charm and smiles Sunday.

There was one particular moment that really broke my heart. An attractive young mother stopped in and began to sift through the large bin that holds my prints. Her daughter, who I would guess is about 5 or 6, stood behind her staring at Ben the entire time. The little girl had a look of fear like a monster would jump out and grab her at any moment. All of the sudden it dawned on the mother what was happening. She smiled at me and then began talking to Ben in a very friendly manner. She reached out and grabbed Ben’s hand and then tried to pull her daughter closer. Even with the increased amount of effort and attention her mother showed the little girl would have nothing to do with Ben. The little girl eventually burst into tears as mom became more embarrassed and desperate to resolve the situation. As she left the booth I reassured the young mom that “it was okay” and not to worry about the situation even though my blood was boiling.

Why was I so angry? I couldn’t blame the mother for trying so hard to show her daughter that Ben was not worthy of that kind of fear. I can’t blame the little girl either. I’m not sure how she perceived Ben but at such a young age it was obviously frightening. It was also a perception that many other people who were much older and wiser held. They tried not to stare but just couldn’t help themselves. Like passing a car wreck, they have to slow down and take a look. But I can’t be angry with them either because I was one of them once.

So what was I angry about? It is the system we live within that still separates and segregates certain individuals of society because they are different from “the norm.” My son is perceived as something to be frightened of because it’s something some folks have never seen before. The problem is that he is someone. He is another human with emotions, abilities, and talents that are almost always overlooked by them.

In contrast it never fails that I’m blown away by the reactions of the artists and crafters at these same shows. Ben is always greeted in such a manner that noticeably includes him in the inner circle of those with the most creative of minds! The artisans at every show he’s ever attended have always made him feel welcome and a part of something special.

And so I asked a question of Conni, whom I respect as one of the best artists I’ve ever known. What is the difference between them and us? Her reaction was interesting if not humorous as she pondered the query for the rest of the afternoon. Every few minutes she returned to the booth to discuss her thoughts with me (Trust me when I tell you her booth was in the safe hands of The Art Pimp). She struggled with the answer for a couple of hours until we both agreed on the answer. It is perception.

We artisans watch life very closely. We value all that it has to offer whether beautiful or ugly, trivial or life giving, realist or abstract, pristine or soiled, entertaining or devastating. We must make an honest choice in how to interpret our subject matter which means considering every angle, evaluation, or assessment possible. Our interpretations of those ideas are why buyers come to purchase our works. We see what can’t be seen. We feel what can’t be felt. We understand what can’t be understood. It is our unique perception that defines us.

That is essentially what this blog is about. It is also why the invitation to be an artist at EdVenture in September is so important. Both of these “tools” are a way for us to bring them closer. I invite them to take a closer look at exceptional people and accept them as someone to enjoy and not something to fear.


Anonymous said...

How ironic--reading that Ben lost a tooth made me think how much like every other seven-year-old he is--my own included, and yet your post is focused on differences and perception. Here are more ways your family is like my "normal" family:

1) You have two beautiful children who have good days and bad days, who have interests and who sometimes get bored--and either way, they let you know about it.

2) You gave up a 9 to 5 job, and so did I. Even though we get to follow our dreams, it's tough at times, and I'm so glad I'm there for the little things that I would have missed behind the desk--the smiles, the spontaneous giggles, and even the daily struggles. Oh yeah, and the big things too--the "firsts" and all the new things they learn...

3) You have a spouse who supports you, though I don't know you, from your writing I'd say with a lot of love.

4) You have a family for which you would (and do) do anything for, and they'd do the same for you.

And as for those who can't see all the similarities amongst all the differences, some day they'll learn. As for now, revel in the fact that you have already learned. You know something they don't--unconditional love in it's purest form.

bennie said...

Anon, thank you for commenting. I take your thoughts to heart! Honestly I don't want to paint a big wall between us and them. But I see it very often and it hurts. I am so thankful that many folks perceive Ben in a manner which makes him significant. The "norm" is much different.

My response has taken a couple of days to digest. You are right on in comparing your child to Ben. It is significantly different though.

Honestly I still see so much fear in the public's eye when they see Ben. I want so much for him and his peers to be the norm one day.

Thanks for visiting here and I look forward to more dialogue in the future.

Karen said...

Very thought-provoking post. It's interesting that artists tend to be more accepting of differences.
Our Ben always seems to attract a lot of stares and comments in our small town. Even though he can't be the only local child with special needs, we hardly ever see other kids like him when we're out. I wonder if it's part of the same problem. I long for the day when our exceptional children are accepted as the neat people that they are.

kimmyk said...

This was such sad post. I'm sorry Ben was having seizures, but glad you pulled that tooth. Does discomfort/pain usually cause Ben to seize?

Sorry about the little girl. Maybe after what happened the mom will have a heart to heart with her and maybe next time she'll be more willing to at least say hello.

Your commenters made my heart smile.

Sorry your show didn't go as well as planned.

Gretchen said...

Dearest Bennie,
We just got back from our PKS Family Reunion weekend and it was amazing! Your post brings my greatest fears to light...that my darling little Simon won't be loved or included. Yet, on the other hand, I see children/adults with (especially mental) handicaps and Darn it all! I still don't know how to act with them. (I discount those families we met this weekend, because I'm comfortable with PKS)...but I just don't always know what to say or how another will react to my efforts. Will the child start screaming because they're sensitive to touch or scared of people? And on it goes.I usually at least smile. Lame, huh?? I talk and talk about Simon and PKS so people will know he's lovable and actually loves attention.
Your mother/daughter visitors are not unique. AT LEAST, thank God, the mother was tolerant and caring!! It could have been she was dragging her daughter away from that "odd child" (you know what I mean) It was a teaching moment. My 8 year old is very uncomfortable with special needs young adults that don't respect her space. :) But Ben wouldn't scare her. It was AMAZING to see all the siblings this weekend interact with the fellow PKS kids. They loved each and every one. And everyone we encountered at the hotel, zoo, and especially at dinner Saturday night were kind, helpful, and so respectful! It was a beautiful weekend.

Sorry to go on so long--I almost emailed you personally, but thought your readers might like to see my reply.

Kisses to Ben!

P.S. Yes, why/how can a tooth cause seizures?????

bennie said...

Intolerance to pain...we think. And I will be glad to let you post a blog entry here about the weekend! Some of the pictures I couldn't get to open.