Tell the World

 

Every kid is really smart.

We’re the ones who act retarded.

by Polly Medlicott and Chris Mueller-Medlicott

 

What my son Christian and I want to tell the world, in hopes we might save some other kids, is his own story because Chris’s silence nearly caused him to be lost.

As a young child with cerebral palsy who couldn’t talk and couldn’t manipulate things with his hands, Chris never got past nine months old on the developmental checklists. At his first big university-center evaluation at age two-and-a-half, a communication system and power wheelchair were not even mentioned as possibilities. The team’s goal was to get Mom (that’s what they called me) to accept the reality that my son had severe cognitive disabilities so that I would not continue to be in denial.

The obvious idea—that Chris, at the same age when other kids were busy talking and walking, needed alternative means to walk and talk—did not come up. Later, when Chris was seven and was evaluated for augmentative communication by hospital therapists, they strongly implied that my son was not in the tiny, elite category of “kids we know are very smart but they’re trapped inside their physically handicapped bodies.”

They assumed that because Chris could not respond as expected to a command, did not act normal, he “did not have knowledge of cause and effect,”and therefore could not make use of a communication system. It didn’t occur to any of us to try to find out what he could understand, aside from what he could express.

So this was Christian’s situation: he understood perfectly well everything that was going on, but he was treated and spoken to as if he didn’t understand anything at all. At his school, he was in a separate class where none of the kids could talk or move around, and they spent all their time undergoing therapy and getting changed or fed.

 

CHRIS:  The effect on me was damn frightening. Got me terrified of uneducated popular opinion.

What would you do in his situation? What would anyone do? Being frustrated and angry doesn’t get you anywhere. You can’t throw things or go on a rampage. Since you can’t express preferences, you are presumed not to have them. You become passive. Gradually, you withdraw even further, until finally you stop trying, stop responding, stop looking at people.

When Chris did not make eye contact, this was further proof that he had a very low IQ, even though they had stopped testing him by then.

The only computer software he was exposed to was for “cause & effect training”at a lower than preschool level. Later an “outreach”program at the regional institution set out to determine what type of stimulus would be most motivating—vibrating toys, lights, sounds, smells or Lik’m’Aid powder—so he could be taught cause and effect. Not surprisingly, it didn’t work for Chris, who was eleven and almost unreachable by this time.

When Chris was fourteen, I read Rosemary Crossley’s book, Speechless. I was struck by the simple, pure truth that although speech is a physically fragile thing which can be destroyed by a lack of oxygen at birth or a stroke, language—the knowledge and understanding of it—is almost indestructible, inherently part of being human.

I realized, in a flash of mental lightning, that Chris had been dislabeled as profoundly mentally retarded because he was unable to communicate, surrounded by low expectations, and stuck in severely retarded environments. His response was to shut down and opt out.

When Chris was fifteen, we went to Syracuse, to the Facilitated Communication Institute, where we learned that he could spell out words. This marked the end of the “severe/profound”era of his life—for us, that is; for the experts, it never ends—and the beginning of his attempt to chip his way out of the thick, passive shell in which he is trapped.

It is slow, hard, painful work, but Chris is motivated—highly motivated by his hope that in the next few months, after three and a half years of struggle to get it approved by Medicaid, he will be able to drive his own power chair. Talk about cause and effect! And finally, at age eighteen, he has escaped from special ed and takes regular classes at his neighborhood high school.

 

CHRIS:  Now tumultuous test trying monumental trying typing my words.

What my son Chris and I want to scream to the world is this: How can professionals not understand that when they don’t give a kid a way to communicate and the tools to do what other kids his age are doing, he will become deeply depressed and stop trying?

Once he gives up inside, he will look even more “retarded”on the outside, even if, like all kids, he is really smart. Can’t you see that you destroy a life when you decide a kid doesn’t need a communication system, based on the fact that he doesn’t communicate?

Take a look into those self-contained severe/profound special ed classrooms and see all the kids who have given up trying.  See them in their wheelchairs strapped down, belted in, tilted back, drugged out. Keep in mind that they cannot say a single thing about it. Not a word.

Apparently it’s okay to shut kids down like that if someone is convinced the kid is profoundly mentally retarded. But think for a minute. What if there is no such thing as mental retardation?

What if, like Chris, they’re using non-behavior to say, “No, No, NO !”to being condemned and segregated as subhumans?

Do you hear what we’re saying?

 


Shortbus Studio: Making It Cool

Shortbus logo

Arts, Disability and Adventure

As a longtime advocate for community inclusion, nothing could sound less cool to me than a sheltered workshop—you know, where people with disabilities are segregated and confined in one space all day, sitting at tables doing repetitive piece work for which they are paid very little.

But in Burnsville, NC, the Shortbus Studio folks have transformed an isolating, boring, limiting sheltered workshop into an “intuitive art and outdoor adventure program”, as described by its intrepid leader, Cassandra Styles.

At Shortbus Studio, artists/participants create art and crafts, volunteer in the community, do challenging sports, and just generally have a whole lot of fun.

So my question for y’all is this: why can’t every sheltered workshop turn into a place where the arts, community engagement, and adventure are primary elements?

Looking to the Shortbus Studio experience as an inspiration and model, I believe they can.

Some history: in 2008, Yancey Residential Services took over management of the “Mountain Opportunity Center” sheltered workshop. Cassandra Styles, who was very involved in the design and construction an innovative, award-winning group home for that agency– Hawthorne House– was asked to lead an effort to enrich and update the day program.

The program participants and staff decided to focus on the arts and adventure, one person saying he wanted to finally “make the short bus cool”–and that was the name of their art gallery and store. They then painted all the walls of their building bright (very bright) colors, and started trying out any and every activity they could think of, like regular massages and eating sushi. And they were off and hiking!

What I admire most is how Cassandra and her team (including staff and artists)  find ways to use adventures, volunteering and the arts to build collaborations and everyday relationships. People in the larger community come to see for themselves that individuals with disabilities are much more alike than different from them.

Clay ArtistOne great example of this was the idea to offer much-needed space to the Western North Carolina Quilt Trails Project  along with design board prep support, so that quilt project designers and artists naturally work alongside Shortbus Studio artists and get to know each other.

Through this contract, Shortbus earns a little extra money for art supplies and other expenses, as they do with their colorful gallery/gift shop, where greeting cards and t-shirts with original, quirky art and quotes are for sale.

Another way Shortbus Studio artists hone their skills while engaging with the area’s active and dynamic arts community is through the Toe River Arts Council. Taking part in 4-week class sessions 3 times a year, they explore new techniques in ceramics, found and recycled art and sculpture, and much more.

Here it is—-the videos:

One of the best creative projects they do is making short videos, which can be viewed on the Shortbus Studio YouTube channel . Cassandra Styles and staff member Seth Johnson worked together with a team of staff, Shortbus artists, and friends to create, shoot and edit short videos in 4 hours flat – all while having a great time: an amazing accomplishment in my book! 

What could be cooler than going out in the community, acting silly or serious, making music and creating dialogue, having fun and ending up with a video that can be enjoyed by everyone?

My favorite is Shortbus Studio’s Home Sweet Home. and I also recommend Courage to Love  and Shortbus Studio’s Flash Animation .

Siberian BearcubsCool volunteer projects Shortbus Studio artists do include: working in a community garden that feeds hungry people; making chew toys for the animal shelter, (once doing hands-on care of rescued Siberian bear cubs for a zoo–see left),  turtle rescue, river and beach clean-up, MANNA food bank, raising funds for the Red Cross and others, shelving books in school libraries, and serving as Big Sisters/Big Brothers to young residents of nursing homes.

Living out their motto , “Get out and play!,  Shortbus Studio artists go on weekly  mountain hikes, ride horses, go whitewater rafting, zip lining, kayaking and anything else they can think of that’s adventuresome and fun.

 

Shortbus Studio Whitewater RaftingThe Shortbus Studio example brings up several questions for me that have multiple complicating side-issues .  I plan to address these in follow-up posts:

How could this model be duplicated? What are the essential factors for such a transformation–from sheltered workshop to arts, community engagement and outdoor adventure program—to occur in our state and in the U.S.? Cassandra Styles may be presenting at this year’s TASH Conference—stay tuned!

What will be the effect of the new Home and Community-Based Services (HCBS) regulations from the Centers for Medicaid and Medicare Services? Instituted this year, these regs significantly increase the range of community options and access to the community that must be offered to individuals served, in order for the service provider to be reimbursed by Medicaid.

And what about the highest ideals of inclusion activists–that individuals with disabilities should not live in group homes,  go out into the community in groups, or attend segregated day programs?  How do those ideals fit with the reality that there are many, many individuals  who need and want the support of a supervised residence/program?  There are also many adults with disabilities who are living with their families or in their own staffed apartments or homes who don’t have the opportunity to express themselves creatively and are not engaged in the community. These people may feel  isolated and lonely, and may not have the opportunity to make meaningful contributions to society.

These questions don’t have definitive answers, for sure, but they are certainly worth pursuing.

Meanwhile, please do check out Shortbus Studio’s Facebook page—it’s way cool….

 


What is Interweave Asheville?

Interweave Asheville:

A Community Inclusive Arts Success Story

 

The Asheville screening of  A New Kind of Listening, and the organization and follow-up for this event, make a great example of our model. It’s  a process that really works to build inclusion and accessibility to the arts.ASHEVILLEWORKSHOP

In March, 2010, A New Kind of Listening screened at Jubilee!, a progressive community-centered church in downtown Asheville, NC.  Leading up to the screening, there were two meetings of a local committee which included individuals with disabilities and family members, representatives from disability advocacy groups and community arts, local churches, a professional theater company, and others. (Check out the Organizer’s Toolkit for ideas on who to invite, a sample invite, agenda outline, and much more on every part of organizing a project in your own community)

In addition to spreading the word about the event through e-mails, social networking and local media contacts, the committee members talked about their vision and goals for an inclusive arts project in Asheville and generated much excitement about taking inclusive arts to the next level:  reality!

Members of the arts community, as well as the faith community representatives, were drawn in by the excitement, and wanted to be involved. Several churches offered free space for rehearsals.  A professional theater company eventually offered to be a fiscal sponsor which allowed the  group to apply for grants and receive tax-deductible contributions.

At the well-attended community screening, people came up after the film was over to tell their stories or share about their experiences with the arts and with disability issues. Many attendees signed up to be on a local e-mail list to be informed of future gatherings.

On the morning following the screening, 15 people came to a focus group meeting on inclusive arts, and that same evening 20 people came to a workshop on disability awareness and the messages we had received as children about disabilities. Some of the stories people told were acted out by members of the Asheville Playback Theatre, and after more discussion and a closing circle, there was a real feeling of connection between workshop participants.

To summarize, the core group of Interweave Asheville came together as a result of the community meetings, the film screening, the follow-up workshop, and a ‘visioning’ meeting we held after that first disability awareness workshop.

Interweave Asheville is an inclusive, democratic and collaborative theater group which has met regularly ever since. Interweave is people with and without disabilities working creatively, playing and talking together. For the first year, we had monthly meetings at Jubilee! Community Church.  During the 2-hour meeting,  members took turns leading an experience, usually improv-based, which was related to their talents, training and interests. We always had at least 30 minutes of discussion, where participants shared feelings and ideas about their group and individual perceptions. The participants’ vision for Interweave is also an evolving topic of conversation.  Occasionally we asked arts professionals from outside the group to lead an experience, and a few of those leaders had a donation basket, but most of the experiences were offered freely, as was the space.

IMG_1604In the second year, and up to the present (Interweave has been together now for 4 years!), the group decided to meet once a week,  in order to work  more intensively on their unique inclusive approach to improv, and to develop performance pieces.  Two of the members live in an accessible/affordable apartment complex in downtown Asheville which has an amazing rooftop meeting space looking out over the city and the Blue Ridge mountains, and that is where the weekly rehearsal/meeting takes place.

In the past few years, Interweave Asheville has performed at the University of North Carolina/Asheville;  AB Tech;  an elementary school;  Disability Partners, our local Center for Independent Living; Burton St. Community Center;  Asheville Ability Arts Fair; a downtown cafe/theater;  on a double-billing with Asheville Playback Theatre, at Alternate Roots, a national/regional artists’ gathering, and at many other venues and community events.

The core group numbers seven people now, and they are as close as any family, with as many challenges and joys as family members have. The Interweave work continues to be a deeply meaningful creative and personal process for  its members.

Most recently Interweave performed three original pieces at the 2014 Asheville Fringe Arts Festival. Two ‘Interweavers’ won an award titled “Artists Who Defied Boundaries with their Bodies”, for their movement duet which includes two dancers and a power wheelchair.

The video below is from a community event/performance.

Leave a comment if you want to know more about Interweave Asheville, and I will contact you.

Thanks for helping to build more inclusive communities through the arts.