Friday, March 13, 2015

A Farewell Post


Good evening (or morning or afternoon or whenever you should happen to be reading this), everyone! As many of you may know, today was the last official day of winter term, excluding finals week. I don't have any more classes to attend, and in spite of a poorly timed case of food poisoning, I presented my thesis today, which is required for graduation from PSU's honor's college.

Required for graduation? Graduation??



Yup. Today was my last official day of school. That means, too, that today is my last official day working for the Mt. Hood Kiwanis Camp senior capstone.

Kiwanis has become such a significant part of my life in the past couple years that it's kind of strange to think that I was so close to never having been involved with MHKC at all.

I started working for MHKC when I first came to Portland State in fall, 2012. I got an email through the English department listserv saying that a social media manager was needed for a capstone project that allowed students to work with and learn from members of the disability community while spending two weeks at summer camp. I saw it and thought, “Yes! A writing job with flexible hours!” And then I had a sinking realization.

Two, actually.

The first was that I would have to jump back into the world of social media, which, after not having had Facebook for a year and a half or so, was not appealing. The second realization was that I didn't really know anything about the disability community. The way I saw it, I wasn't qualified, except that I like writing. But I decided to apply anyway.

Another conflict.

I needed a writing sample. Or rather, it was suggested I include a writing sample. But what should I send in? I had no idea what the mysterious person behind the email wanted. An academic essay didn't seem right. Neither, certainly, did poetry. Maybe fiction? But those pieces were all awful. Anyway, the writing sample was optional, right? So I sent in my resume and an enthusiastic paragraph that flattered both myself and the capstone, and closed it out with this:

“I wasn't sure what genre of writing would be best to send as a sample, so if there is a specific type of writing you are looking for, please let me know. I would be happy to send something your way.”

Well, I got an email back. It wasn't a request for a writing sample. It just said that I did not have the qualifications they were looking for. Well, at least I hadn't gotten my hopes up?

Except I had! Of course I had! And what a blow! Was it because I didn't have experience with the disability community, or was it because I forwent the writing sample? The uncertainty was aggravating. But...I'm here now, saying farewell. So obviously something happened.

Luck, mostly. Serendipity. Happenstance. Someone neglecting to show up for their interview. So I got an email wondering if I was still interested in the position, and could I please send a writing sample. This time, I sent two, just to be safe. If the second chance wasn't enough, ultimate excitement was soon to follow. The graduate student who had emailed me and read my samples, Jon Stark, happened to be part of the Ooligan Press publishing program. He asked if he could publish my piece on the Ooligan blog! I figured I probably still would not get the job, but publication was a huge, huge deal.

Quick fast-forward. I had to leave my American Sign Language class early to go to the interview. I had neglected to look up how to sign “interview”. Instead, I told my professor that I had to leave early to go to a “work communicate”. In all my nervousness (signing with my professor one-on-one always made me nervous, which was just great given that shaky hands are a byproduct of my anxieties), I forgot that I actually do know how to sign “job”, and I do know how to spell, which means I could have spelled “interview”. But it didn't matter; he got the point.

It's funny to me now how appropriate my “work communicate” sign ended up being in describing what I would end up doing with Kiwanis. As I mentioned, one of my big fears that almost kept me from applying for the position in the first place was that I didn't “have experience” with the disability community. I mean, it's not like I had never interacted with people who have disabilities or that I was afraid of them by any means, but...it felt like simply existing with people who have disabilities wasn't enough.

I guess I was partly right. I was on the right track, anyway. I did my best to not make people feel singled out by their differences and things like that, but there was also so much to learn. As I did research for blog posts and talked with people involved with Kiwanis, I constantly found myself thinking, “I didn't even know that was something I could know.” But it was okay. It was okay that there were things I didn't know, because no matter how you're involved with Kiwanis Camp, you're allowed to go in not knowing, and you leave with shiny, sparkling knowledge. One of the great things about MHKC is that you get to learn.

For me, it has been a constant learning process, and often there were lines so fuzzy that I didn't know where I should stand. Or if I thought I knew where I wanted to stand, I sometimes wasn't sure if MHKC was the appropriate venue to express those sentiments. But as time went quickly by, it became clear to me that my main purpose of my work was to communicate with others, communicate with members of two different communities and hopefully bring them into one...

[cue cheesiness in 3...2...]

The Mt. Hood Kiwanis Camp Community!!!

[cue applause]

During my time here, I did a lot of learning. But I always kept in mind that if I was in the dark about things, then maybe other people like me were, too. Passing on what I learned and helping create a fuller understanding of various aspects of disability in our culture was invaluable for me. I really hope that my contributions to the MHKC @ PSU community have interested or helped at least a few of you dear readers.

It's sad to go, but we are working on finding someone superneat to take over and explore ways to further better the MKHC capstone community. And I'll still be poking around here and there. Old habits die hard, as they say.

(Speaking of old habits, I hope you liked the pug pictures. I simply can't help myself! And it's my last official post, so why not?)



So I conclude with thank you, and farewell. Stick around, though! Who knows what changes may be coming in the future? I know I'm eager to find out.

And as always, enjoy your weekend!


Sincerely yours,

Shelley

Saturday, March 7, 2015

Yoga Visual: Sharing Yoga with Portland's Special Needs Community


Hi everyone! Sorry for the delay, but...(in other, semi-related news), this humble blogger is almost done with her thesis! So I know you won't hold my lateness against me, will you? :)

Okay, okay, so that being said, my brain fry is preventing me from coming up with a smooth segue in to today's blog topic, so let's just get right into it. Movement! Safe spaces! Activity! Learning opportunities! We all deserve that, don't we? But sometimes it's difficult for parents of children with special needs to find guided physical activities that are designed specifically around their children's needs and abilities. That's a shame, because movement is a powerful teaching tool, and it's important for keeping our bodies and minds healthy.

Cindy Hurlbert, a George Fox alum, recognized this issue and thought that kids on the autism spectrum should have the opportunity to learn life skills in a safe environment while also increasing their coordination, strength, and body awareness. And so, from Cindy's experience with the special needs community and her love of yoga, Yoga Visual was created.



A recent post on the Yoga Visual Facebook page reads: Yoga for Special Needs = yoga adapted to meet each child's needs and capabilities, Yoga for Special Needs = empowerment and tools to help themselves.

“I really feel that way about structuring yoga for the special needs population,” Cindy says. “I want the kids to leave with tools that they can use outside the yoga studio. Everyone should have access to the benefits of yoga.”

Benefits like strength, balance, coordination, and flexibility, but also increased focus, confidence, relaxation, and self-regulation. Yoga can also help promote language and communication skills—after all, body language is the language we all share—as well as give opportunities to connect oneself to others. One student even asked Cindy to write down a savasana relaxation poem he learned in yoga class because he thought it would be helpful for his bedtime.

Cindy is a fluent American Sign Language interpreter and a registered yoga teacher who has completed two 200-hour teacher training programs. The first was taught in conjunction with the Deaf Yoga Foundation, where she learned how to teach Deaf-friendly yoga classes using American Sign Language. The second was an “outstanding program” put together by Dina Lang at Santosha Yoga, a studio that promotes the idea of of yoga for every body. Cindy has also taken a Yoga for Special Needs training course, and has been working with the special needs community in Portland and Beaverton for years.

One of Cindy's feedback tools that is especially
helpful for kids with speech expressive and
receptive delays.
After becoming fluent in ASL, Cindy worked for the Portland public school system as a classroom interpreter. She worked there for five years before switching to a more steady job so she could reach her goal of earning her Bachelor of Arts degree, which she did. She moved up in the company to become Assistant Vice President of Internal Audit, but after the unexpected death of one of her mentors (who was also chairman of the Beaverton School Board), Cindy decided to leave after 17 years with the company.

“He was my age,” Cindy says of her mentor. “It was a shocking loss, and it caused me to take a step back and reflect on what was important in my life. As I evaluated options, I kept coming back to my experience with the kids I had worked with before and how much I had enjoyed working with them, and how much I learned from them every day.”

So she began working as a substitute instructional assistant for special education programs in the Beaverton School District and was eventually placed at Sunset High School to support kids on the autism spectrum.

“Just like my past experience, I learn something from them every day.”


Cindy usually teaches her yoga sessions at Santosha Yoga, where her interest in yoga really took off, but in April, as part of Autism Awareness month, she will be teaching a class for children with special needs at VillaSport, an athletic club in Beaverton. This is particularly exciting because so far, no other athletic club in the area has offered classes to the special needs community. Cindy is excited to explore the possibilities that may come with special needs yoga being made available at different venues.


So check it out! I happen to know that Cindy is a great person who is able to think quickly and creatively, and is very well qualified. For more information, head over to the Yoga Visual website and Facebook page.

(**Note: Yoga classes for the Deaf and hard-of-hearing community are not yet available but will be coming soon!)


Also, enjoy this great weekend weather and take the opportunity to get in some movement of your own! :)

Friday, February 27, 2015

Good Dog: Florida Ruling May Set Precedence in Service Animal Rights


As much as I'd love to take my dog to school every day, I know that I can't. I'd be distracted by her, she would probably be nervous, and she would definitely be disruptive. And that's okay, because I don't need her to come to class with me. I would love it, but I don't need it.

But what if I did need my dog to come to school with me and the school district wouldn't allow it? That's the issue seven year-old Anthony Merchante, his mother, Monica Alboniga, and Stevie the dog have faced for the past two years. But! But! The fight to let Stevie accompany his young human companion to school has ended in the family's favor.

The issue, it seems, was not that Nob Hill Elementary school in Broward County, Florida didn't allow service animals, but that their interpretation of the federal regulations governing service animals differed from Alboniga's. And, apparently, from U.S. District Judge Beth Bloom's.




Anthony has cerebral palsy, spastic paralysis, and his nonverbal, so he needs his pit bull, Stevie, to keep an eye on him and make sure that he is safe. Stevie can lay across Anthony's lap and stabilize Anthony's head to his airway isn't impeded; he alerts people if Anthony has a medical crisis by barking and pressing a sensor that gets the attention of caregivers; he holds medical supplies in his vest; and he is assurance to Anthony's mother, who is raising her son and five month-old daughter by herself.

“Stevie lets me know when he [Anthony] has seizures or problems breathing. He pushes be toward Anthony. He barks,” she says. “When Anthony is having convulsions, he starts barking and goes looking for us. Then he goes back to Anthony and stays with him.”

Stevie was specially trained to the Assistance Dog International Standards, but the school district wanted more. In 2013, when Alboniga first submitted a request for Stevie's approval, she was told that Stevie needed a series of vaccinations that are rarely applied to dogs and she would need to purchase costly liability insurance. Furthermore, they required she provide, at her own expense, a handler for Stevie rather than keeping him tethered to Anthony's wheelchair as usual.

This, according to Alboniga's lawyer, Matthew Dietz, was an “impossible barrier” and violated federal civil rights laws by taking away preferences to the choices of people with disabilities. But while the lawsuit was in the works, Alboniga accompanied Anthony and Stevie to school for four months in compliance, and then the school board appointed a custodian to be Stevie's handler. Still, the school board insisted that it is not their responsibility to help Anthony keep Stevie at school (even though they were the ones requiring that he had a handler), especially since the school's staff was already trained to do what Stevie does. It would not be reasonable, they said, for them to have to bear the cost of the dog's handler (that, again, they insisted on requiring).


And here's the thing: the school's staff may be trained to help students with disabilities, but the inseparable bond that forms between service animals and their humans is part of a deliberate design, as long separations diminish the animal's responsiveness and effectiveness. So it's not just a matter of Anthony's safety at school, but at all times.

So it's a good thing, then, that Judge Bloom ruled that not only is it reasonable for the board to assist Anthony “in the same way a school would assist a non-disabled child to use the restroom, or assist a diabetic child with her insulin pump, or assist a physically disabled child employ her motorized wheelchair,” but also that Stevie should be able to accompany Anthony to school without all the extra requirements the school board tacked on.

Friday, February 20, 2015

Opening Our Ears to the Deaf (And Our Minds to Others)


A friend shared this with me, and I thought I would pass it along. The speaker, Pamela Weisman, tells about the events that led her to see that she had been ignoring a large group of people: the Deaf community. She talks about the ways in which the hearing community marks Deaf people as disabled by calling them "impaired", and she discusses community pride as well as the benefits of non-verbal communication. While she talks specifically about the Deaf community, many of her points can be applied to other under-represented communities, like the disability community.

"The Deaf don't need to be avoided, and we don't need to feel sorry for them. Deafness shouldn't be viewed as an impairment, but rather, a difference. A culture."

Sounds reasonable, right? Check out her talk below, and have a great weekend! :)


 


ALSO! An interesting note: If you go to this video on YouTube, read some of the comments. Many of them harken back to our post about TEDx providing captions for their videos. We hope this happens soon (because anyone who has tried using YouTube's captions knows how questionable they can be).

Friday, February 13, 2015

Autism is not a Lynchian Monster


Alright, alright, alright. I give in. I, for one, am tired of being bombarded by people's opinions on vaccinating children versus not vaccinating children. ...But if you can't beat 'em, join em?



Okay, not really, but this week's post does have to do with anti-vaccination beliefs as they relate to ableism, consciously or unconsciously. This week's post does NOT weigh in on either side, either has pro- or anti-vaccination. This is not the venue for individuals (like, for instance, me) to make claims that could be mistaken as representative of the views of Mt. Hood Kiwanis Camp and MHKC @ PSU as organizations. But after reading an essay by Sarah Kurchak, I thought that this aspect of the dead-horse of a debate might be worth bringing up.

But if you want a Valentine-y themed blog, click here. :) 


Now, here we go:

In her essay, Kurchak, who has autism herself, argues that many people are choosing not to vaccinate their children because they see autism as a worse fate than illness that, in certain circumstances, could lead to death.

The notion that vaccines leads to autism was perpetuate by Andrew Wakefield, whose infamous study linking autism to the MMR (measles, mumps, and rubella) galvanized the anti-vaccination panic in 1998. In 2004, that study came under heavy scrutiny, and in 2010, the study was fully retracted, and Wakefield was found to have altered and misrepresented the medical histories of his subjects. He subsequently lost his license. Since then, no scientist has been able to replicate the results of his...study, and major studies by the Journal of Pediatrics and the Institute of Medicine have not found any links between autism and vaccination.

Still, the subject comes up time and time again, and because of celebrity endorsements (last year, Jenny McCarthy was all over the internet with claims that harmful toxins in vaccines lead to autism), the issue gets a lot of media perpetuation. Again, I'm sure everyone and their dog has at least some sort of half-hearted opinion about whether people should vaccinate their children or not, but the thing that Kurchek (and I) are concerned with is the menacing light cast upon autism throughout this debate.

Autism is not a monster. It's not a plague. It's not a mar on the otherwise pristine crystal that is, surely, the human race.

Monter-baby from David Lynch's "Eraserhead" - NOT Autism


People may accept autism, but they don't want it to be an active part of their lives. And I don't think they should be blamed for that. Those who have people with ASD in their lives know what joy and insight those folks contribute and likely wouldn't exchange that experience for anything. But can those who don't know be blamed for not wanting a child with autism? I'm not sure, but at what cost (and with what evidence) are these “preventative” acts being taken? According to Kurchek:

“Through no fault of their own, unvaccinated children, immunocompromised people, babies too young to receive the vaccination and the occasional vaccinated person (no vaccine is 100 per cent because science is not magic) across the continent are suffering from an infection that was essentially eliminated from the U.S. in 2000. All because a sizable group of mostly-privileged parents have decided that reviving a group of life-threatening diseases and potentially inflicting them on their loved ones and neighbors is infinitely preferable to having an autistic child. …

… Someone who refuses to vaccinate their children because they’re afraid of autism has made the decision that people like me are the worst possible thing that can happen to their family, and they’re putting everyone at risk because of it. I’ve been told by some anti-vaxxers that they don’t mean my brand of autism; they mean non-verbal autism, or as they are so fond of calling it, 'profound autism.' I’m not about to take any solace in the idea that they’re willing to make exceptions for autistic people who can perform as neurotypical.”


So there's that. Whether for or against vaccination, both sides should maybe look at the implications of the argument—implications that go beyond medical issues or freedom of choice or public health and into the world of individuals with autism who exist as expemplifying subjects for people living in an ableist world.



Saturday, February 7, 2015

Neil Marcus: "Disabled Country"


This week, we'd like to share a poem by Neil Marcus, an author and playwright who has been working to reshape ways of thinking about disability through his art. The poem here is called “Disabled Country.” A version of this poem is featured on the front page of the Smithsonian's permanent web exhibition, EveryBody: An Artifact History of Disability in America.




Marcus has generalized dystonia, a neurological movement disorder, which onset when he was eight years old. As he reached adolescence, depression also set in, but with the help of co-counseling, a confidential, peer-to-peer counseling that aids in self-discovery, Marcus began to develop his performance aesthetic. His mother was a musician and his father, a filmmaker, so perhaps it is no surprise that Marcus found catharsis in the arts.

In the early 1980s, Marcus started a street zine called “Special Effects”, which featured poetry and art based on his experiences as a member of the disability rights and independent living movements.  One issue reads:

The most severely disabled person
in the world
                   Has an Intelligence
                   And humanity
         So Precious that a society
         of highly advanced robots 
              would travel Billions 
              of Light Years through 
                          Space 
            And spend trillions of
                            dollars 
              In order to consult
                    with her 
              For the briefest moment
              
However, he is probably more well-known for his performance art play, "Storm Reading", which was performed at the Kennedy Center and featured on both NPR and the Today Show. The award-winning play ran for nearly a decade.



It looks like copies of the zine collection can be bought here. and an online, annotatable version can be found here.  Might have to get one…

What do you think?

Friday, January 30, 2015

Couple Hopes to Open School for Children with Autism


A couple in Knoxville, Arizona have decided to open a school designed just for students with special needs. 

This isn't the first time Brent and Jaime Hemsley have made a push to help children with disabilities--last year they successfully campaigned to buy a three year-old boy a $30,000 power wheelchair--but it is their largest endeavor. Their school, a non-profit called Autism Achievement Academy, would be the first of its kind in Knoxville. 

"We're scared to death," says Brent. But they've already got the land picked out and a fundraising campaign underway.


Inspiration came from Brent and Jaime's four year-old son, Logan, who was diagnosed with autism just before his third birthday. With the help of two different specialists, Logan's development has seen much improvement. The couple thought they would never hear their son speak, but a couple months ago, Logan said "I love you" when being tucked in to bed.

However, the expert-recommended 40 hours of therapy per week is not covered by insurance, so costs add up. The Hemsleys know they are not the only parent who face this dilemma. So they have decided to open a school to help.

It's a huge task, but as Jaime says, "If I can help just one other person, it's all worth it,"


Check out the Autism Achievement Academy's website and their Go Fund Me page to learn more.

Have a great weekend!