Leisa A. Hammett

"Embraceable," A Film About Williams Syndrome

-In honor of National DisAbility Awareness Month (March)-

"It always angered me that people with disabilities never got good lighting, they never got good photography and they never got good cameras," Kent says. "So I just went out and bought an old Aeroflex — the same camera they used in Easy Rider. About 20 to 25 percent of our film is shot on 35mm film." --Jon Kent in an interview by Nashville Scene.

Embraceable - Trailer from Kent Creative on Vimeo.

Not only did my filmmaker friend attempt to raise the bar on an often marginalized segment of society--people with disAbilities--his 501 Cinema Productions film about Williams syndrome sold out in March last year with more than 300 viewers in its' world premiere at the 2011 Thessaloniki Documentary Festival in Greece. The festival also selected the film for two special screenings--one touring Greek towns and the other during Special Olympics. Too, the film garnered a Silver Addy Award for the Embraceable trailer, above, via the National Advertising Federation. Learn more at embraceablemovie.com or Facebook.

Embraceable will also be at the Sprout Film Festival in New York next month, along with a photo exhibit by Kent. The filmmaker also sold television rights for the film in the United Kingdom, Australia, New Zealand, Israel, Poland and the Netherlands. This year marks year 10 for Sprout, a festival of film and video related to the field of developmental disabilities. According to their mission statement: "People with developmental disabilities as subjects and performers remain marginalized in the media. The Sprout Film Festival aims to raise their profile by showcasing works of all genres featuring this population."

Williams syndrome is a rare genetic disorder affecting only one in about 10,000 people. Individuals with Williams syndrome are small in stature and have unusual gifts in language and music yet also have intellectual disabilities.  In history, the legend of elves may have been based on people with the disorder who, in addition to their petite features are generally extraordinarily happy and extremely social. Scientists have also learned much about all of our brains by studying the disorder. They learned, for instance, that humans process math and language in different hemispheres of the brain based in part on the fact that people with Williams syndrome talk so fluently, with such impressive vocabularies that belie their intellectual disability, which is demonstrated in part with an inability to perform simple math. Fascinating.

Hats off to Kent for a beautiful, touching film. Always expect something stunning from Kent Creative.

DisAbility Dialogues, Part III: The Things People Say--in Church

Grasping a few stolen moments, I busily typed away, entering into the computer the volunteer protocol for setting up communion in our small Lutheran church (ECLA). C. was new there and already active. She stopped and chatted and then, cocking her head to the side, she wrinkled her brow and peered down at me with a look of intense concern:

"Is there something wrong with little Grace?"

Like so many other special needs mothers in my familial predicament, it was in retrospect that I formed my best choice response. Instead, stunned, I looked up at her--my eyes filled with disbelief--and replied weakly:

"She has autism."

To the question of if something was wrong, ideally I would have replied simply:

"No. She has autism."

In my quicker moments that's just what I've said.

In the informal mothers poll that I took, a friend who is earnest, sincere and devout in her Christian faith relayed the time that a faith healer was going door-to-door in her rural neighborhood. When my friend came to the door, the man could see that her son was rather affected by his disAbility of autism. The traveling healer then proceeded to inform my friend that her faith must thus be weak....

A friend of a friend, whom I once met, attended a Pentacostal church where she was a devout member and where her family of five sat on the back row given the behaviors of her child with autism. Eventually the family was told by church members that their daughter was demon possessed....

Sadly, that pronoucement is not isolated. Several years ago, a Milwaukee boy was inadvertently smothered in a pillow case during an attempted exorcism in a church....The earliest record of autism dates to the Middle Ages. The symptoms described are clearly autism. The label given, however: demon possession.

Many deem a sense of spirituality--humankind's desire to connect with the Divine--a fundamental part of our make up. Likewise, in times of struggle, we often reach for a sense of something greater than our mortal selves. As I've written here on The Journey with Grace, our religious institutions have historically failed us. When special needs families most need words of kindness from fellow parishioners, they have too often, instead, received words of judgment, misunderstanding or silence. Statistics also reveal, historically, that 75 percent of families that would attend a faith community do not because they are misunderstood, asked to leave, and/or cannot literally get into the building due to accessibility issues.

I do believe this is changing, but it has been a long road my peer families have traveled the last 15 years since "we were diagnosed," and long before that for others....

My point with this post, the third and concluding "Things People Say" (*I think*) (maybe) is not to condemn religious organizations. Despite my jaded view of organized religion, I have traveled a continuum from fundamentally Christian conservative to moderate Christian to universalist--recognizing and honoring all paths--and liberal Christian to simply spiritual and universalist. Regardless of where we special needs parents are on our personal spiritual paths, we all need words of kindness within our faith communities. We want courtesies extended. And, for some, questions not asked--as some parents are too embedded in their unhealed pain, or sadly, embarrassed or not at peace and not ready for a stranger to broach the subject of their child's disAbility.

And folks: Don't. Ever. Tell a special needs parent that God chose them because "He" knew they can handle it. I know plenty who are not equipped to handle it for emotional, socio-economic reasons, etc. Please. I repeat: some parents are in intense pain. Some of that pain can even stem from religious beliefs that if they'd prayed more, were better Christians, if they'd lived more right, that they wouldn't have been...punished this way. Yeah. Some people believe that. And one doesn't know that when they decide to pop out with what pseudo warm and fuzzy proclamation that they think might be a nice thing to say. And really such statements may often really be more about what makes the person saying them feel better themselves in the face of their own discomfort over what is perceived as a deficit and less than perfect. 

One friend became incensed when their church asked if his wife would become a Stephen's minister....

"Are you kidding me? WE need a Stephen's minister!"

(Good for him.) The family had been through multiple, intense surgeries and numerous physical complications...the list of the emotional and physical impact of their child's disAbility was seemingly endless at the time.

Though I truly agreed with him, I did not take too kindly to the anthroposophist who volunteered at my daughter's Waldorf preschool school--back when my daughter's diagnosis was very fresh--saying to me:

"You know your daughter has come to you to teach you lessons."

Ugh. I knew he meant well. I know others mean well. I get that.

There are ways to engage a special needs parent: With respect. Kindness. And, engagement when reciprocation is readily given. And advice? Suggestions? If ya just gotta, first inquire. See if they are open to talking about their child. Or, just hold off. You never know where that parent is on the spectrum of their grief....But holding off does not equate with silence. Silence hurts, too. How about: How are you doing? How are you feeling? How is your child doing? Is there something you need help with?

As a wise mother once said to me:

"We have to practice a lot of forgiveness on this journey don't we?"

Yes. We do. Which, if you are religious or spiritual (or both), brings us back home and to what it's all about. Both in the message of most religions and in a sense of spirituality, but also in how we deal with life: It starts within....By taking responsibility. Knowing that sticks and stones--though they seem to be all too plenty--well, it's a choice in how we deal.

So, to the cute dude with the rad boots and the Ron Paul stickers: You inspired this blog post series here. And, I'm glad you came along now at this juncture in my journey. At some point earlier, I might not have been this cool about your suggestion of giving my daughter a toke. But now you've given me a chance to reflect on choice, assessing where I've come from and where I am now. You gave me the opportunity to assume the best of another and also to practice forgiveness and compassion--which, again, starts at home. Thank you.

Part I & II of this series:

DisAbility Dialogues: The Things People Say, Part I

DisAbility Dialogues: The Things People Say, Part II

The Why of Resistance

"Why?" Two friends and I have asked on multiple occasions during separate gatherings with each other:  We know that our spirtual practices of yoga, meditation and journaling--throw in walking in nature, etc.--serve us greatly. They help keep us clear, stable, emotionally fueled. But why have we, during periods in our lives, resisted them?

My Saturday and Sunday mornings these days are dedicated to meditative reading, journaling and meditation. And recently, I had a small breakthrough revelation. I find it very easy to let the morning go by checking Facebook and emails, etc., especially when Grace is here with me versus with her father. Before I know it, the morning’s gone, I must get up and go and there went my practices, my solitude, my Me time, my spiritual-emotional refueling.

 

 

That recent morning, I knew I needed to buckle down and read a little and meditate and journal. I would start and then stop, get up and then comeback. I did this about three times. And then finally, I made myself start again. And that's when the reward came. I gained some peace about an incident four days earlier, one that had left my inner world periodically agitated. And, then, also about an evening out with a few professionals in my field that triggered something in me. And then, the same morning, during my meditation, the words came that inspired a future blog post here on "The Journey with Grace."

And then, I got it. It’s about the Ego. The Ego does not want us to change. It wants us to stay down in our pain, wallowing around in what does not serve us. I do not understand all of the reasons for this yet, but I am getting more clear on the detrimental ways of the Ego. It is the Ego that wants us, encourages us to not do these things that help us get clear and quiet and transport us to our truths. Our ego wants us to stay in the dark….

For many years I’ve wondered about this resistance. For four years, I lost connection with my meditation practice. I was confused about an important issue in my life and I could not get clear. I didn’t connect through meditation because I was so disconnected from my spiritual truth and center. As I have written in past posts, I am at peace with that now, especially knowing that that blip in my life was necessary for my spiritual evolution.

For that, I am grateFULL….Practices. They strengthen us. They keep us centered and connected to Source. And that, too, is why they are called disciplines. Reward...comes with discipline. And, in the words of my spiritual teacher:

"Easy. Goes. Nowhere."

Photo: Leisa A. Hammett, copyrighted. San Juan Islands, WA.

Levity: John Wood & Paul Harrison @ Frist Center

One never knows what their going to see at Frist Center for the Visual Arts' Gordon Contemporary Artists Project Gallery. Something different. For sure. Always. "Answers to Things: John Wood and Paul Harrison," had me cackling with its' warped yet clever, ridiculous and inane takes on the somewhat mundane. This YouTube video explains how the two, who live in different cities, meet up every few weeks to create this performance art. Enjoy the endorphins you'll get from a loud, fun belly laugh. I did.

 

DisAbility: A Dance with Diversity

I was born a triangle. A triangle in a family of circles and squares. There are memories of this dynamic coursing through my familial childhood memories, in preschool, kindergarten, elementary and boldly in middle school. And, oh, gawd, most definitely in high school. By my college years, I'd hit my stride of zagging when everyone else was zigging. My friends were always somewhat the odd balls, the underdogs, the outsiders or they appreciated the one they recognized in me. And so, it is not surprising that I'd choose to come into this triangular life as the mother of a differently abled child, and she, the daughter of a triangular mother.

Diversity....Can you handle it? Can you embrace it? The disAbility journey is one of differences. I see around me those who wince at the lack of their offspring's blending. Anyone who works, at least with the autism population, will tell you that there are certain subgroups of parents who seem to have the greatest struggle accepting their child's diagnosis. Often they are: teachers, psychologists, medical doctors and wealthy individuals. (Education and smarts and all the money in the world can't make this diagnosis totally fade into the background.) Those who've worked so hard to follow the program and do what they needed to do to...not stick out. Oops. You're gonna stick out on this journey.

Some cope with the diversity by insisting on sameness. Fear brews:  We will only have friends that are like us. We are scared of the world outside of us. We must live together, sequestering ourselves in safe shelter. Go to schools and in classrooms of only those like us.

Pssst: Try embracing the diversity. Give others a chance to do the same. Give your children a chance to make their way into the world. The world needs our diversity. And our children need to be in that world.

We can't go back. Us triangles. We're stuck with three sides with pointy ends. Embracing starts not by comparing ourselves and all the ways we are different but celebrating the ways we are AND the gifts we bring to this world by those differences. Let's name a few: a different way of thinking, a different kind of intelligence even. Gifts wrapped up in those differently ordered brains. Bringing with disAbility a chance to serve and for others to make contact with their hearts. (Sometimes this is very, very hard for those who don't like differences in themselves, in their children, in others.) A chance offered not only to be taught but to teach--tarting with the subject at hand--Diversity.

Are you teachable? There's a lifelong curriculum ahead. It's starts with Diversity 101. Maybe by the end of this life I'll be a scholar. You? Go with the flow. Let go of resistance. Promise: accepting What IS is so much easier. This triangle knows.

Broken Heart

"This little heart of mine. I'm gonna let it shine."

It was the mid-80's. Nearly three decades before New Thought consciousness terms such as "manifest" would become standard vernacular. But that's what my therapist in essence said was happening in the string of compliments that I had on some level sought for affirmation. It must be happening again for, I've received a string in the last couple of weeks, and these I'm kinda giddy about. Bear with me....

"You were always wild at heart," said my best friend.

A dear, older woman at the gym gushing about my curly hair: "Oh, you just look at it and think--'she looks fun!'"

"Something's going on with you," said my friend Gregory, looking at my face curiously. "You are really shifting! You're glowing."

And then, my friend Ken: "You have a marshmallow heart. And, I'm probably one of the few people who know that."

Perhaps I've attracted these affirmations to myself as an assurance that the changes within are showing without...

I do think there's something to the Gemini thing. I've got two sides to my personality and if you see me in a work setting, you may not know that there is a part of me that's not all business, not all task-driven and actually likes to have fun. She's the gal on the dance floor that's got rhythm and goes to town, causing all the folks that know the all-business side to reach up and scratch their noggins, perplexed.

And what Ken meant about the marshmallow heart...there are those who know that I am gooey on the inside. If you read this blog maybe you think that's how I am. And you're right. But if you know me in person you might be more likely to say something like: "Her bark is worse than her bite."...Those are the people who know there is something soft behind the tough exterior.

You see, the recent events in my life have broken open my heart. And, it needed to be broken open. Around it there was a hardened shell. The past is the past. Rocks are hard and water is wet. At 51 going on 52, I now realize that I suffered from emotional abuse by parents that loved me and meant well. Blah-blah-blah. Yeah, I know. But, listen, I'm not blaming them. No victim card show-and-tell here. Twenty years of therapy hasn't gotten me to the point I am now. Sure it helped. I'm grateful for all the work I've done. But it took this latest wake-up call for me to see patterns that I didn't even know were buried deep, perpetuating a pattern of bricks built around my heart.

Only a few people got close and I kept many at arms length. I've lived years in critical mode because I was heavily criticized. Criticism was both of my parents' weapon of protection and I adopted what I was taught. It was an ugly defense mechanism.

What I'm attempting to do, who I'm attempting to become, is requiring a HUGE paradigm shift of me. I am practicing daily seeing the god in people I pass on the street. To treat each person with the kindness deserving of the Christ within. Yes, I can be warm and fuzzy, but it's been selective. It's been to people that I thought to be safe. That wouldn't hurt me. Or that I could take out of a catagorical cage and befriend. My family was BIG on categorizing people. I learned that well, too. Categories alienate. They fail to unite people into the truth that we are. All. One. All the while I wasn't really conscious of all of these categories and tapes deeply enmeshed into my DNA and buried in the subterranean vault of my spirit.

I'm changing. It's a process. I need to buy some time. Sometimes I flip the switch off and go dark...until my heart is jabbed back into wakefulness. And in all of this change, this expansion of the heart, I'm getting lighter. I'm lightening up because I am doing deep, deep work that's sloughing decades of debris away from my heart. And what is emerging is that glow that Gregory saw. And, that broken heart? It's becoming: Luminescent.

And the thing is, I'm not special. Well, I am. But no more than You. We are all special. We all have these hearts that have been broken. Some of us have been repaired. Some of us are in a state of repair and then some are piled up in a heap in disrepair. Still, all these precious hearts are no less special wherever they are on the continuum of their heart beat journey. This old world is cruel. But that cruelty--as we may judge it--and yes, sometimes it really is that--it is our teacher.

I am greatFULL for the teachers. They are teaching me to come home to who I am, and who you are and who we all are. Beings. Being with hearts. Of Light. 

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Part of who I must return to is my long-denied visual artist self. Being an artist was taboo in my family and with my parents help, I slammed the door and then I double bolted it. After years of dabbling in various media, I am honing in on collage. The heart, above, was cropped from a collage I did a few years ago in a class with collage artist and teacher, Cindy Wunsch. In the full painting, the heart is actually attached to a basket, as the heart is a hellium (or, "heal-e-um," as I've titled the piece) balloon. Well, that's make it a hot air balloon, actually....In EMDR and visualization work the last eight years, I have been working with images of balloons in various stages of ascension. Now to make the time to put to canvas those multiple images of hearts that are gifted my imagination in this healing work of my own beating heart....

GraceArt Cards Series Premiering at Hillsboro Village Exhibit & Others

The journey of a thousand miles begins with one step....So said wiseman Lao Tzu. I've had to remind myself that these first three months of 2012 so that I don't...FREAK OUT! Absolutely stupidly insane was I to say "yes" to what artists just don't do. And that is have FOUR shows in ONE YEAR!. The requests came in one by one and it all seemed manageable until I said yes about the fourth time. (My resistance wilted with the fact that it was a museum in what I thought was Athens, Ga.*) If you've been traveling along with us here on "The Journey with Grace" you know that I'm talking about the art work of my soon-to-be 18-year-old daughter with autism, Grace Walker Goad, who has been painting since she was four.

One of those steps along those thousand miles which I'm journeying--with many more to go as you may know if you are awating an e-blast (remember I'm technically challenged,) and an update on her website, (I cannot remember how to edit it...But I'll get her done. One step. One step. And many more....Oh, yeah...back to one of the steps I've taken is to print a new card series. The GraceArt Card Series II will premiere at the Hillsboro Village exhibit reception at Hot and Cold, where her (already sold) eight foot mural (you read that right--eight feet) will hang with a series of very affordably priced framed water colors. It's about time. GraceArt Card Series I, was printed in 2006. They are still available individually at HeART of the Spectrum Autistic Community Center in Seattle, but no longer as a series. The last set printed sold out (as a set) in six days last Christmas.

I'm pretty tickled about the images selected for this new series, which are at the printer now. Do these resonate Sunshine and Life and Joy or what?! Vanderbilt purchased one of the originals (a pastels) in this card series a couple of years ago, the three other originals remain available. Two of them (pastels) will be at the May Green Hills Library Exhibit. The one watercolor in the series will be at Hot and Cold in Hillsboro Village. I'm still working on the pricing as these are quality card stock and offset. The giclees became cost prohibitive to print for now.

We'll be selling these at all three spring exhibit receptions--First Thursday (April 5) Hillsboro Village Art Crawl, Hot and Cold Restaurant, 5-8 p.m.; Sun., May 20, 2-4:30 p.m., Green Hills Library and at the McMinn County Living Heritage Museum in Athens, Tenn., Sat., April 14, 10 a.m. - 12 p.m. Please come by and see us, say hello and if you feel so led, purchase a set or better yet also a framed piece of art. I will most likely also make this new card series available also as singles in addition to sets. (Think Mother's Day and Teacher gifts! And next month, National April is Autism Awareness Month, too.)

All GraceArt funds received go back to Grace Walker Goad. Art pieces go into her future independent living fun. Card series sales help fund the expenses for all the items mentioned here (framing, printing, professional portfolio documentation...it's expensive being an artist!)

Meanwhile: One step. One step. One....

Direct website address for GraceArt: www.GraceGoad.com. On Facebook: Grace Goad | Artist.

Images, top left to right: Untitled (Pink Pastel,) sold; Untitled (Pink & Yellow Pastel). Bottom left to right: Untitled (Torn Watercolor); "Purple Waterfall" (Pastels).

*We are pleased to be the featured artist at the McMinn County Living Heritage Museum in Athens, TENN. This small town has a noble, active parent group which for at least two previous years has brought artists on the spectrum each April for National Autism Awareness Month.

DisAbility Dialogues, Part II: Things People Say

To date, the well-intended young man who suggested my daughter with autism relieve her symptoms with a few tokes on a joint wins my personal autism mother's prize for the most bizarre uninvited suggestion for my daughter's disAbility.  Many others have come before him. And true to course of this journey, I'm certain he will not be the last. It seems to come with the territory of having a child with obvious differences....

"What's wrong with her? Cat got her tongue?" Ouch. My spirit was particularly tender at the start of our autism journey. The clerk at the cash register had asked my very young child--only recently diagnosed with a severe developmental disAbility that was additionally compounded with a severe speech and language disorder--what Santa was going to bring her for Christmas. To this day, she'd follow such a question with a blank stare and silence. The comment was an induction to my first Christmas with autism, back when visits of grief came around unannounced and gut-punched. I looked at him and said, "No, she has autism." His response: "Oh, that's what's wrong with her." Ouch, again.

There was the mother in my daughter's Waldorf preschool. Bluntly she said to me, looking at me straight on, dead serious: "I think you are doing too much [intervention]." Oh, heavens. If she only knew. This was an alternative hippie-style school and the rigors in which I'd engaged my child ran counter culture to their counter culture. A kind woman I befriended there later admitted that she had thought the same thing as the mother who blurted her verdict. But, first my friend read up on autism early intervention. And then, she understood. She understood about brain plasticity and the need to intervene quickly with this pervasive disAbility that affected so many areas of my child's life. It was a preparedness plan. Survival. Protocol. I was customizing it. I was at the hippie school one day a week. I was doing creative arts therapies. A public preschool. Private speech and occupational therapy and group speech therapy. A couple years later, I would realize that we were doing too much or too much variety or too many venues, but I was doing what I thought was right at the time and I was desperately trying to infuse creativity into the rigor and compensate for a school system that was failing us with too few hours of engagement as per national best practice standards....

"Autism! Call me!" The card was tucked under my windshield wiper. I assumed it was from a parent hungry to connect with the owner of my car which sports it's own share of bumper stickers--one about loving someone with autism and another reading, simply: "Autism Awareness." Instead, the number I called was someone convinced that the line of quality, frozen organic food he wished to sell me was sure to change the life of my autistic child.

Oh. Bother.

Many years have passed and my skin has thickened. So many suggestions have been made by people who seem to either congregate at health food grocers or churches. They come out from behind the produce isle or behind the center pew. There have been so many that I've forgotten the most of them--juices, supplements....Did I mention pot?...Besides being unsolicited, the problem with many such suggestions is that the giver fails to take into account the in-cred-i-ble amounts of interventions and earnest research and prolific professional consultation a parent has been doing for years. In our case, a life-long diet of whole foods--organic as much as possible. And, while it provides a good foundation for my daughter, it is not a cure and my local Whole Foods Market supplies me well, thank you.

So, I decided to poll a group of mothers. Not just any group of mothers, but The Mothers From Hell. I told them about the pot suggestion and our private discussion group comments were double digits long. From that I picked two winners:

"Have you ever tried Shock therapy to get rid of his symptoms?" [And, yes, shock therapy has actually been used on autism.] The mother fantasized her reply as "Have you ever heard of punch therapy?"

The second prize winner's entry falls into the most uncomfortable arena of God and disAbilty. Specifically when followers of religion make judgments and proclamations. There seem to be a lot of those disciples lurking round the pews. Stay tuned for: "Things People Say. Part III" For "Things People Say, Part I," click here.

Postscript, the rest of the series:

The Things People Say, Part I

The Things People Say In Church, Part III

School Holiday Long Weekend Recap

She went here:

I went here:

 

Top photo: Mickey's Florida playground. Bottom, more my speed: Cade's Cove, Great Smoky Mountains, East Tennessee.

Women's Theater Project: Poignant Portrayal of Bi-Polar Disorder Thru Sun.

"There's not enough women on stage! There's sex objects and side kicks, but no Hamlets." ~ Chris Clarke, male board member, Tennessee Women's Theater Project.

Not only is this small, courageous theater bringing equality to the stage, they are tackling tough issues such as breast cancer among African American women (who experience more death rates than their white peers.) And now through Sunday, March 11, Tennessee Women's Theater Project is tenderly portraying bi-polar disorder and depression and the effects on family members in the regional premiere of "The Disappearance of Janey Jones." I almost missed this play. Don't you!

In an effort to broaden the impact of the play and create a larger conversation about mental illness in the
community, TWTP founder and artistic director Maryanna Clarke, along with local mental health
support and advocacy groups, has organized a series of audience engagement events to encourage the
community dialogue.

What: Post-show audience discussion with expert moderators

When: Saturday March 3 and March 10, immediately following the performance at
approximately 9 PM

Where: Z. Alexander Looby Theater, 2301 Rosa L. Parks Blvd., Nashville, Tenn. 37208

Misc.: Various mental health advocacy organizations will be providing moderators, including
the National Association of Mental Illness of Davidson County

Note: Playwright Jennifer Fawcett will lead the March 10 post-show audience discussion.

In partnership with The Creative Arts Project, made possible by the Middle Tennessee Mental Health
and Substance Abuse Coalition, the TWTP has also arranged a small exhibition of paintings created by
individual with mental illness in the Looby Theater to help enable individuals with mental illness and
addiction disorders to express their creative abilities, increase their personal self-confidence and
overcome the stigma within the community about mental health disorders.

For more information on the Tennessee Women’s Theater Project and The Disappearance of Janey
Jones, visit www.twtp.org.

For more information on The Creative Arts Project, see www.creativeartsproject.org.