Up About Down: Designs for Girls with DS

Did you know that the National Down Syndrome Congress Annual Convention is taking place right now in Denver? The convention, designed for parents, other family members, and caregivers, began this afternoon and will conclude on the 21^st. It has a variety of events, like sharing sessions, workshops, and even a film festival. But what I would like to share with all of you is the roundabout way I found out about NDSC Convention.

*Guilty Pleasure Alert!*

I was actually doing some research on a designer from the new season of Project Runway which, to my pleasant surprise, began last night. Justin LeBlanc of North Carolina is the first deaf designer to compete on that show. Pretty awesome, right? My research on LeBlanc led me to an article about new designer, Ashley DeRamus.

At this year's NDSC convention, DeRamus is launching her brand new clothing line for women with Down Syndrome. The idea for her line, Ashley By Design, formed about a year ago when DeRamus and her mother, Connie, found that like DeRamus, many other girls with Down Syndrome often paid as much for alterations as they did for the clothes themselves. DeRamus, whose clothing line's motto is "up about down", decided that girls like her deserve to look and feel good in clothes that were made for their bodies.

Many women have a hard time finding just the right fit, but this challenge is augmented for those with Down Syndrome, who often have smaller torsos and shorter legs. DeRamus thought there obviously was a market for cute clothes that women with Down Syndrome not only would want to wear, but actually could wear without paying a fortune in alterations. It's not just about the clothes, either; DeRamus hopes that by helping girls like her look nice, those girls will have more confidence and higher self-esteem.

At this point, the website for Ashley By Design is up and, along with some of her designs, it features a bio, a note from her mother, and some photos and news where—to bring this all back around—I found a photo of DeRamus with Project Runway's Tim Gunn! (I thought it was a neat coincidence, at any rate.)

Anyway, the point is that I think it's fantastic that someone saw that there was a big hole in the clothing industry, a whole market of ignored consumers, and decided to do something about it. Go give her website a look!

Also, for those interested in the NDSC convention, online recordings will be available from the end of the convention until June 2014.

Limitation to Liberation

In Reno, we aren't necessarily as hip and artsy as Portlanders, so we have a month dedicated to being artistically inclined rather than being so all year around. Anyway, this month my little city is Artown, which means a bunch of free art, music, events, and performances (including a performance tonight by the Note-Ables, an inclusive music group that provides a creative musical outlet for people of all ages and abilites). This also means I've got art on the brain and, therefore, the blog. Summer and art just seem to go together, though, don't they?

I hope you all watch this artsy and introspective TED Talk below, because even if the message doesn't jive with you, the art is super cool. The speaker, Phil Hansen, shares his discovery that limitation ended up being exactly what he needed in order to free himself creatively. Hansen had been an art student, but after being discouraged by permanent nerve damage that left him unable to pursue a certain style of art, Hansen decided to “embrace the shake,” a mantra of sorts that eventually led him to see that embracing his limitation could drive his creativity:

“Limitations may be the most unlikely of places to harness creativity, but perhaps one of the best ways to get ourselves out of ruts, rethink categories, and challenge accepted norms. And instead of telling each other to seize the day, maybe we can remind ourselves every day to seize the limitation.”

The video is ten minutes, so I will leave my introduction short. As always, I highly encourage you to watch it and share your thoughts. It's one thing to embrace limitation, but what do you think about deliberately creating limitations for the sake of, as Hansen puts it, liberation? As someone who struggles with my own artistic creativity blocks, I find it extremely compelling. But I want to know what you all think! Watch the video and leave a comment here or on our Facebook page!

What Makes a Disability?

It's time again for another one of those contemplative and potentially wandering posts stemmed from a day of restless sentiments of nothing to do. I was bored the other day, and I found myself testing the limits of my joint mobility, popping fingers out of their sockets and things like that as I am wont to do, when I decided to do some research on my hypermobility. You know, just another day...

It turns out I likely have a form of something called Ehlers-Danlos Syndrome, which is a disorder that has six main varieties, but almost all types of EDS come from insufficient or faulty amounts of collagen. I fall into the hypermobility (with possible crossover into "classical") category, the most common and least severe type of EDS, marked by crazy loose joints and elastic skin. I have a hard time stretching after a workout and sometimes my joints slide out unexpectedly, but it's otherwise not too big of a deal for me. But what I thought was interesting when doing this research was that many people categorize EDS as a disability. I can understand the less common, more severe types of EDS, like vascular or kyphoscoliosis, characterized by fragile organs and blood vessels and progressive scoliosis, respectively, but I'm curious if people who experience hypermobile or classical EDS (classical involves more skin elasticity and less joint mobility than hypermobile) consider themselves disabled.

My party tricks.

This got me thinking about other conditions that some people call disabilities and others do not. For example, through my daily romp through the Twittersphere and less frequent journeys through other social media outlets, I've noticed that some people call depression a disability. I had never really thought of depression in that way, but it is an interesting take. Other common ones I've seen some debate about are dyslexia, scoliosis, epilepsy, dwarfism, and deafness.

It makes sense that in some instances, like dwarfism or hearing impairment, categorization of disability varies within the community. Both are considered disabilities by the ADA, but there is mixed sentiment within those communities. I think I might have mentioned in a previous post that, because I got involved with sign language and deaf culture before I got involved with the larger disabled community, I hadn't really thought of deafness as a disability. Now I'm not sure what to think of it. I don't necessarily believe it needs to be black and white—this is a disability and this is not—but it's interesting to think about what makes something a disability and what makes something not a disability in our eyes, either as individuals or as larger communites. 

Surely definitions from person to person, but can those definitions change as a person moves from group to group, or as a group becomes part of something larger? For example, I don't think I had an opinion one way or another about hearing impairment as a disability until I got into ASL. Then I hadn't thought of it as a disability, just a way of life. That opinion didn't necessarily change, but it became less definitive as I got involved with Kiwanis, became part of a different group. Could that definition become even more fluid, or perhaps more solid, as I think in terms of the Portland community, the Oregon community, or perhaps how it might change in Reno, or on a national or global scale? Would it even matter?

Bone Breaking

I don't consider my stretchy skin or loose joints a disability by any means (in fact, there is a style of street dance, “Bone Breaking,” that is entirely dependent on such joints), but others might really struggle with the condition. Does the same go for everything? What makes a disability a disability? Do we need these definitions? Am I out of the loop or, perhaps, out of line? I'm extremely curious what you all think about this. Please, please comment!

Focusing on EveryBody: New Smithsonian Exhibit Brings Attention to Disability History

This week, the Smithsonian opened up a new exhibit that focuses on disability history as part of the National Museum of American History. “EveryBody: An Artifact History of Disability in America” is the first of its kind and is entirely online, which means many people can access it.

Currently, the collection is made up of stories and atrifacts collected by the Smithsonian for more than 50 years, and the collection will continue to grow. It is difficult for people today to get a good grasp on disability history since the disabled community was often ignored in the past, but this exhibit sheds a bit of light onto that cast aside community. As museum curator, Katherine Ott, says, “Being anonymous or forgotten does not mean that you are invisible. We can piece together past experiences by combining what the image tells us (about age, clothing, location, era, activity) with what we know about the history of disability in America.”

A poster available to download

There are many untold stories out there that are important in gaining an understanding of disability history and promoting awareness and acceptance. Only a handful of individuals ever made it into the history books, and even then, it was because they had some historical influence outside their disability. The evolution of the role of disability in American culture as a whole seems to get little attention. How often does one find such an account, especially one that is accessible to a widespread audience? The Smithsonian's exhibit offers people the opportunity to see a side of America's history that often goes unnoticed, challenging people's understanding of American history and how we got where we are today.

The exhibit is divided into five main sections: Disability and History, People, Place, Technology, and Citizens and includes items like Braille writers, prosthetics, protest artifacts, medical devices, and wheelchairs that show the history and progress that has been made in America. They also have some really neat looking posters that you can download (in English and Spanish) for free and print.

Definitely go check it out; EveryBody is an interesting and educational exhibit that is worth giving a look. And isn't it said that we can't move forward without first knowing where we've been? Click here to head over to the online exhibit, explore a little, and then tell us what you think about it!

Happy learning!

That Wu-Tang Interpreter Girl from Bonnaroo

Happy Friday, everyone! I have a few different things to mention today. First, our first group of counselors will be going up to Mt. Hood Kiwanis Camp this weekend to get ready for session one of camp. Good luck, and have fun!

Also, Mt. Hood Kiwanis Camp's 80^th birthday is coming up. MHKC has been around an impressively long time, and such a great camp is worth celebrating. It's a good thing, then, that on Thursday, July 25^th, Mt. Hood Kiwanis Camp is having a birthday celebration up at the camp! It sounds like it's going to be quite the shindig, with cake, live entertainment, some rad historical photos (like the one at the left), and a barbeque dinner. The festivities start at 4:00 pm, barbeque dinner begins at 6:00, followed by skits at 7:00. Bring your own lawn chair and $10 for dinner. It should be a good time! For more information or to RSVP (by July 5^th), email Terri at terri@mhkc.org.

And now, as you may have guessed from the title of this post, a little commentary on the most popular ASL interpreter since Lydia Calas. There has been quite a buzz around a woman named Holly Maniatty who interpreted for Wu-Tang Clan, Matt and Kim, and R. Kelly at this year's Bonnaroo music festival. Many have commented that she stole the show and was more entertaining than the performers.

Maniatty has been a certified interpreter for 13 years and a performance interpreter for ten of those 13. This year was her sixth or seventh interpreting at Bonnaroo, and though the attention she has been getting recently is overwhelming, Maniatty says that she is thankful for the positive regard being brought to Bonnaroo as an accessible music festival:

“I guess I am in front of a lot of people but I'm always so absorbed in doing a good job—it's just about the deaf patrons who are there. I hope it spreads the word that Bonnaroo has an accessible festival and amazing interpreters that come from all over the country.”

This video may contain language that is offensive to some viewers.

At festivals like Bonnaroo, teams of many interpreters work together based on skill level, music specialty (for example, one interpreter may be particularly good at signing folk music where another is better at rap), or familiarity with a particular band. Often, multiple interpreters will sign for a single band, going back and forth to reflect different artists' voices. For example, Maniatty was signing with another woman, Jenn Abbott, during the Wu-Tang performance.

Maniatty also notes that it takes a lot more than just interpreting words as they are presented. She spent about 50-80 hours studying Wu-Tang's music, background, and interviews so she could know them as well as possible. That way, she can interpret their lyrics, often filled with metaphors, as accurately as possible. Also, should a member of the group decide to freestyle, she can freestyle, too, and not lose the meaning of the lyrics.

Some of you may know that I'm interested in becoming an interpreter, but, man! Performance interpretation looks exhausting! Have any of you ever been to a concert that was interpreted? What was it like?

Also, don't forget about MHKC's birthday party, and wish the first wave of counselors well!

Click here for a full interview with Holly Maniatty.

Let the Camp Countdown Begin!

Can you believe how close camp is? Summer break has officially arrived, and the first session of camp begins in a week! I was poking around the Kiwanis Camp Facebook page (not to be confused with the Kiwanis Camp Capstone Facebook page), and I saw people sharing some of their favorite memories from pervious years of camp. To get you all pumped for camp (as if you really needed more excitement), assuage some of the anxieties new counselors might be feeling, and share with non-Kiwanians some of the sentiments of camp, I have decided to share some of these memories and the love that comes with them right here in the hope that more people will get a fuller understanding of MHKC.

And now, in no particular order, favorite camp memories!

1. The annual F&G synchronized swimming contests
   
   
2. “No matter how lame my jokes were my campers always laughed whole heartedly.”
   
   
3. Berit falling in the fish pond
   
   
4. How campers get to just “be”
   
   
5. Campers having fun, trying new things, and seeing their smiley faces on the adventure course
   
   
6. “I love when Marilee sings the song: How could anyone ever tell you, you were anything less than beautiful... And she looks into the crowd and then turns around and looks the staff in the eyes, I cry everytime!”
   
   
7. Adventure Kelly as the last raisin
   
   
8. Dancing
   
   
   
   
   
   
9. BBQ/Skit night
   
   
10. Meeting new friends and counselors
    
    
11. “My favorite memory was when Berit was in my group and he let me dress him up like a girl, and put make up on him when we got ready for the dance.”
    
    
12. Seeing old friends and staff
    
    
13. Meeting new peers
    
    
14. White water rafting and water guns while rafting
    
    
15. Horses
    
    
16. Swimming
    
    
17. “I still have a thank you card from a camper's grandparents from when I was a counselor in 1998! Camp was one of the reasons I became a Teacher!”

Finally, I would like to share a quote that was mixed in with the memory comments:

"So many wonderful memories over the years! I love camp!! The community that we build with the counselors, campers and staff in just a week is life-chaning and a beautiful experience for everyone! One reason I keep coming back, my heart and soul belongs up at Mt. Hood Kiwanis Camp!! Wouldn't trade any of it!!"

Exciting, right? What other memories do you have, or what are you looking forward to most this summer at camp? Share here and/or on our Facebook page!

In Appreciation of Counselors

For many of our future MHKC counselors, today marks the last official day of class of their undergraduate careers. Next week they will take their last finals—I express my congratulations and jealousy—and be on their way toward career hunting, graduate school, or maybe a nice break from it all. Most importantly, though, they will be on their way to Mt. Hood Kiwanis Camp! This post is to you, future Kiwanis counselors—all of you, whether you're just getting ready to graduate or if you're well on your way forward. Thank you for sharing your time with us at MHKC.

It is cram time for finals, so I'll keep this post short, but as camp is fast approaching for those in session one, I thought now is the time to express my gratitude to all of you who help keep Kiwanis alive.

Yeah it does.

As some of you already know, I am fairly new to the Kiwanis family, having joined at the end of October, 2012, and, like many of you, I have not yet been to camp. I don't know firsthand the wonder and fulfillment I've heard about from others who have already completed their capstones through MHKC (and even come back again after fulfilling their capstone requirement). I do, however, have confidence that there is some kind of strong magic at that campground just off Highway 26. You can see it in former counselors when they talk about their experiences at camp; you can see it in the MHKC staff as they put their hearts and efforts into keeping the camp alive and growing; and you can see it in the campers. They overflow with the magic of camp, the prospect of new friendships, and the promise of a good time, and they bubble with freedom, unbound by what “can't” be done.

I am inexpressibly happy and thankful that soon you will get to experience this for yourselves, because even though I am somewhat new here, I have rapidly gained a deep affection for Mt. Hood Kiwanis Camp and what it does and stands for. So thank you, and congratulations. I am certain you will create new friendships and change someone's life, if not your own, and I am so excited for all of you.

This is the final stretch, counselors! Summer and camp are fast approaching. You can do this.