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!

Friday, January 23, 2015

Expressive Prosthetics - Bringing Fashion to Function


Hey everyone! We've written a few blogs about really advanced prosthetic limbs, either in their technology or in their affordability. (Read about some of them here, here, or here.) These new advances have come a long way from the clunky prosthetics of the past that were designed more to look like natural limbs than to function like them. But there is something to be said about the appeal of the human silhouette.

Canadian company Alleles Design Studio has found a way to bring prosthetics physiologically closer to the human body without compromising their functionality. Instead of engineering a new type of prosthetic limb, Alleles founders, Ryan Palibroda and McCauley Wanner, made it their mission to provide creative, accessible covers for lower-limb prosthetics.

Wanner and Palibroda with their designs.


Taking inspiration from the evolution of eyeglasses—generic and functional to fashionable modes of self-expression—Wanner and Palibroda think of their covers as “'part of a whole', whether it is part of the body or part of an entire look.”

The covers not only emulate the shape of the human leg, they also have unique, colorful, tough, athletic, whatever-you-can-think-up designs. Alleles has a number of ready-to-wear options that come in a variety of colors, but they also give customers the option to create a customized design. Terry Oh, tattoo artist and Alleles collaborator, works with customers via email to create personalized covers. It's all about “empowering amputees through self-expression.”

New products are released in conjunction with the spring/summer and autumn/winter fashion calendar, so clients can choose covers in the same way they would choose outfits. Have a spring dress that could use some lace tights? No problem.

“We wanted to create a different experience for our clients by removing this product from the medical realm to act more as a personal statement and fashion accessory. Amputees will now have cosmetic options beyond flesh-toned foam and silicon.”



The ready-to-wear covers run around $325 - $475, depending on the design, and customs hang out in the $800s. What do you think?

Friday, January 16, 2015

Lowered Expectations, Altered Abilities


Here at MHKC@PSU, we love NPR and radio-based storytelling in general. Our lovely graduate assistant, Claire LaPoma, even got to tell a story on The Moth radio show! Storytelling is a great way to share experiences and relay information to audiences who might otherwise assume disinterest before listening.

On the other hand, sometimes stories can be…lengthy. But with a good story, you don't notice the time passing, right? That's how it is with this story from This American Life, which explores whether setting expectations inhibits performance and success.


It begins with an experiment on lab rats: all the rats were deemed "average," but they had signs in front of their cages that labeled each rat as either superior or inferior in intelligence. The rats were then given to experimenters who were to send the rats through a maze. Some experimenters assumed they had highly intelligent rats and others assumed they had unintelligent rats, but all were of average intelligence. The results of the experiment were difficult for many to believe.

This led radio host, Lulu Miller, to ask the question "Could my expectations make a blind person who literally has no eyeballs, see?"