Tuesday, December 15, 2015

Intelligent Lives

Award-winning filmmaker Dan Habib is turning his attention to the world of intellectual disability in his new film, a documentary with the working title of Intelligent Lives.  The film will explore ways in which standard ideas of intelligence unfairly limit individuals with intellectual disabilities, as well as ways in which these individuals are contributing to society in fields including work and higher education.

According to the project's website, about 6.5 million Americans are identified as having an intellectual disability.  As adults only 24% of these people are employed, and as students a mere 17% are included in classrooms with non-disabled peers.  One of the film's focuses will be why new ideas of intelligence are starting to help break down these classroom separations.

Habib isn't new to the world of documentaries about educational and disability issues.  His past credits include Who Cares About Kelsey?, an Emmy-nominated film about students with emotional and behavioral challenges, and Including Samuel, another Emmy-nominated film that focuses on Habib's own son who has cerebral palsy.  In 2014, Habib was appointed by President Barack Obama to the President's Committee for People with Intellectual Disabilities.

A trailer for Dan Habib's film Including Samuel.  View a version of the trailer with audio descriptions of the visuals here.

The filmmaker also has a Portland connection: in summer 2015, the University of Michigan Alumni Association reported that he once worked for a daily newspaper here before becoming a staff photographer (and later a photo editor) at the Concord Monitor in New Hampshire.  These days, he's a filmmaker and project director at the University of New Hampshire’s Institute on Disability.

This new film on intellectual disability will also follow the stories of individuals, as well as investigating the historical treatment of people who have intellectual disabilities.  A central focus of the film will be Micah Fialka-Feldman, a staff member, student, and teaching assistant at Syracuse University.  Although Fialka-Feldman scores a 40 on a traditional IQ test, the film will show how he is still able to have a meaningful life and make valuable contributions to society.  Interviews with leaders in the fields of neuroscience, education, business and more will also be included in the film, and the value of so-called "intelligence testing" will be called into question.  The documentary will be narrated by Academy Award winning actor Chris Cooper, and is slated to be completed by the fall of 2017.

You can learn more about the Intelligent Lives project on the Intelligent Lives website, and you can find out more about Dan Habib and his past projects on Syracuse University's website, from the University of Michigan's Alumni Association, and in Education Weekly.

Monday, December 7, 2015

Spotlight: Jonathan Stoklosa, a powerlifter who has Down syndrome

Jonathan Stoklosa can bench-press over 400 pounds.  He competes in powerlifting matches, and frequently places in the top three.  His parents say that he'll sometimes get strange looks at the gym or in competition, but those looks fade quickly once he starts lifting several hundred pounds.

Stoklosa was born with Down syndrome, but his parents Liz and Hank did not raise him any differently than they did their other boys.  The couple says they simply didn't expect anything less from him than from their two other sons, both of whom are adults now as well.  Though Stoklosa is now admired by many, Hank Stoklosa admits that wasn't exactly what he and and his wife were expecting when they were first told that their son had Down syndrome, and he says that Jonathan changed their lives.

Jonathan Stoklosa has a day job, too: a bag boy at a grocery store.  He collects carts left in the parking lot and gives out stickers to the kids.  Despite his immense strength, he's said to have a gentle touch at work.  A quiet man, interviewers have noted that he prefers to let his parents do the talking, though he's been know to yell and pound his chest after a successful lift.

Stoklosa started weightlifting when he was 12 years old.  A year later he could bench-press 185 pounds, and by the time he was 16 years old, that number had risen to 225 pounds.  But the road hasn't always been an easy one; Stoklosa ruptured his ACL in 2007.  His father notes that technique is a critical focus in Stoklosa's trainings, and greater attention is also put on injury prevention now.  Lately the gains in how much weight Stoklosa can lift are made slowly, increasing by about 5 pounds per year.

Stoklosa has competed successfully in the Special Olympics, and in more recent years, he's also competed in regular competitions that are not designed for people with different abilities.  His trainer, Brandon McGovern, has said that Stoklosa is a competitor and strives to be as good as he can be.  A few years ago Stoklosa bench-pressed his personal best at the time: 402.5 pounds, enough to win him third place in his age division in a powerlifting competition in upstate New York.  At the same competition he also received a "Most Inspirational" award, given to him through unanimous choice by fellow competitors.

You can learn more about Jonathan Stoklosa from Delaware Online, CBS News, and the Huffington Post.

Monday, November 30, 2015

Portland State University: A trailblazer in making college accessible to people who have intellectual disabilities

PSU will become the first university in all of Oregon to offer a truly inclusive college experience to people with intellectual disabilities.  The university was recently awarded a $2.5 million five-year grant from the US Department of Education Office of Postsecondary Education.

The funds will be used to create a program dedicated to making sure people with intellectual disabilities will get the support they need to succeed in college.  The program will start by enrolling about five students next year, with plans to expand in the future.  A total of thirty-five students are expected to take part over the five-year grant period.
A photo of a black sign with gold lettering spelling out “PORTLAND STATE UNIVERSITY.”  The sign is a few feet high and is positioned on the ground, where  clumps of ferns surround it.  In the background are widely spaced rows of trees, bare of leaves.  Patchy green grass covers the ground.  A few buildings are visible beyond the trees.
Image courtesy Another Believer/Wikimedia Commons
Creative Commons License

The project will be co-directed by Graduate School of Education faculty members Ann Fullerton and Susan Bert (our readers may recognize Ann Fullerton as the Practicum Coordinator of PSU's Mt. Hood Kiwanis Camp Program).  The project, entitled Think College Inclusion Oregon (TCIO), is a partnership between PSU and the Northwest Down Syndrome Association's Think College Inclusion Oregon Coalition, as well as other partners listed on PSU's Graduate School of Education blog.  It is the first of its kind to be implemented at a four-year university in Oregon.

Academic advising and support will be provided for the students enrolled in the program, and they will have part-time jobs on campus and the option of living on campus, too.  Details are currently being finalized, but students will be able to take regular courses for credit or audit the courses, and may have peer tutors to help with key concepts and terms before each class session.  Modified writing assignments will be available. 

According to national organization Think College's Annual Report from fiscal year 2014 (PDF), young people with intellectual disabilities have the lowest rates of education and work among all disability groups.  Low expectations, the report continues, and limited access to education after high school has restricted these individuals' potential to acquire real jobs and real wages.  The TCIO project at PSU aims to help break down that barrier, and will culminate in the certification of its students' skills for employability and adult life.

As a pioneer in this area, PSU will be sharing its approach with colleges in Oregon.  One of the goals of the project will be to create a blueprint to help guide other institutes of higher learning in Oregon in the creation of their own similar programs.

You can learn more about the project on Portland State University's Graduate School of Education blog, and in The Oregonian/Oregon Live.  For more information, contact the Portland State University TCIO program at tcio@pdx.edu.

Monday, November 23, 2015

OptiKey: Free, open source software to help people with reduced motor functions use computers

Julius Sweetland is a London-based developer who works with financial software.  But for the past three and a half years, he's been working independently on a free and open source piece of assistive technology called OptiKey

Optikey is designed to allow people with physical and speech impairments to use essential computer functions, including an on-screen keyboard and mouse, by simply moving their eyes.  Paired with an eye-tracking device, the software lets users click, type, and even convert what they've written into audio, an especially useful feature for individuals who cannot speak.  See it in action here:

Sweetland was inspired to create the software after his aunt, Gill, was diagnosed with motor neuron disease.  He was disappointed with the options she was offered to help her communicate when her own abilities began to disappear, and as he says in the video below, he wanted to try making his own solution.  Other alternatives were prohibitively expensive, but Sweetland released his for free, saying that it didn't feel right to profiteer.  For full hands-free capabilities the software does have to be paired with an external eye-tracking device, but it is designed to work with many possible brands, including some that are available for around $100.

The development process wasn't always easy.  Sweetland went through several prototypes and tried different types of external cameras, including one converted from a PlayStation.  The tests ultimately allowed him to design something that would work well with existing technologies, and, eventually, he was ready to share it with an actual person.  He worked with the Royal Hospital for Neuro-disability in Putney, London, and was able to receive feedback on his work from a patient there (a patient who, coincidentally, was an ex-software developer himself).  Sweetland says he used this feedback to help improve the next version of the software.

To type using OptiKey, an individual looks at a key on the on-screen keyboard for long enough to "press" it (the time delay prevents keys from accidentally being pressed when a user merely looks at them briefly).  To shorten the process of typing out words, a feature similar to the "swiping" process available on many smart phone keyboards is available, which users can utilize by looking at the first letter of a word long enough to select it and then simply glancing at the middle letters before focusing on the last letter long enough to select it and form the word.  Other familiar smart phone-esque features include suggestions for words and phrases that pop up when a user starts to type.  A "Speak" button is also available next to the on-screen keyboard's input field, which can be "pressed" to convert the typed text into audio.

Currently the program only works on computers running the Microsoft Windows operating system, but Sweetland says that a number of volunteers have offered to help make it compatible with the Macintosh operating system.  It's already designed to be compatible with voice banking programs, which allow users to record their voices (or "bank" them) for the future.  That way, when using the text-to-speech feature later, they can still sound a bit like themselves.

You can learn more about Julius Sweetland and Optikey on Upvoted, Business Insider, and Digital Trends.  All of the computer code for OptiKey is available for free on the code-sharing site GitHub.

Monday, November 16, 2015

Oregon Girl With Down Syndrome Becomes Model

At 2 years old, Ellie Stafford of Aurora, Oregon is already on the path to a possible career.  The toddler is a child model, posing for her first time last August in a shoot for Portland-based children's clothing brand Hooray Haroo.

Ellie has Down syndrome, and while her mother Tiffany Stafford had heard of an organization called Changing the Face of Beauty, a nonprofit which advocates for the inclusion of people with different abilities in media and advertisements, Stafford had not yet thought of having Ellie try modeling.  It wasn't until Ellie's brothers, ages 6 and 8, excitedly pointed out a Target ad featuring another child with Down syndrome that Stafford considered putting Ellie in front of the camera.

Realizing it would mean a lot for her sons to see someone like their sister in the media, Stafford began to investigate.  She sought out local modeling agents and sent them photos of Ellie, and not long afterward, Ellie signed with an agency to do print publications.  Ellie has already been called a natural, raising her shoulder while tilting her head to the side and resting an index finger against her cheek in her "modeling pose."  If there's a camera pointed at her, she doesn't need any prompting to give it a smile.

The news of Ellie's budding career comes at the same time as word began to circulate of Kayla Kosmalski, a child model with Down syndrome who walked in a GapKids show earlier this year.  Katie Driscoll, the founder and executive director of Changing the Face of Beauty (which partnered with Gap), recently said that almost 50% of people either have different abilities or know or love someone who does.  With such large numbers, she states, it is in brands's best interests to represent these individuals.

Stafford herself recently collaborated with Changing the Face of Beauty, forming a campaign called "Who's Next?" which encourages individuals with different abilities to urge retailers to make more inclusive advertisements.  Stafford isn't new to the world of organizations that are dedicated to improving the lives of people who have different abilities and their families; she was one of the founding members of the Down Syndrome Diagnosis Network, a site that aims to help new and expectant parents of children with Down syndrome, and she is still part of the advisory board.

Stafford believes that Ellie can inspire children and parents affected by Down syndrome, and she hopes that in the future there will be more understanding of people of all abilities.  Stafford not want to push Ellie down a path she doesn't wish to follow, however, and it's all right with her if Ellie does not wish to be a model.  But right now, with Ellie smiling at the camera, she's excited to help fight the stigmas against different abilities.

You can learn more about Ellie Stafford on KGW.com (and in the same story featured on USA Today), on Upworthy, and from an earlier story on OregonLive.  Check out Changing the Face of Beauty, the nonprofit dedicated to having people with different abilities be featured in media and advertisements, on their website here.

Monday, November 9, 2015

Spotlight: Iris Halmshaw

By the age of 5, Iris Grace Halmshaw had art collectors from around the world bidding on her work.  Amounts have exceeded £4,000 (about $6,300 in 2014) for the paintings of the Leicestershire, England-born girl, and the now 6-year-old currently has over 152,000 Facebook likes.  Her work has been said to communicate an astonishing amount, perhaps especially impressive for a girl who, when she first started painting, could barely speak at all.

Iris has autism, diagnosed after her parents noticed that, at two years old, she rarely made eye contact and hadn't picked up any words.  After Iris was diagnosed, her parents—photographer Arabella Carter-Johnson and husband Peter-Jon Halmshaw—continued to do their own research on autism, which eventually led them to the idea of art therapy.

Iris started painting in March of 2013.  As part of a homeschool curriculum Carter-Johnson had created for her daughter, they taped paper to Iris's favorite table and let her paint whatever she liked.  And paint she did, but not with the usual technique of a toddler.  Instead, she filled the paper with a colorful impressionist style that would later earn her the title of "mini-Monet."

Iris painting in the kitchen #IrisGrace #Iris #IrisGracePainting #IrisGrace #art #artist #painting

A photo posted by Iris Grace (@irisgracepainting) on

Iris's mood changed as she painted too, becoming happy and free.  She may have trouble communicating vocally, but her mother says Iris uses her paintbrush as a way to convey her feelings now.  And with the money from sales of paintings and prints, the family has been able to continue Iris's weekly private therapies and hire a tutor to assist in her home education.  Carter-Johnson says that all the profits from the original paintings go into Iris's savings account, and profits from cards and prints go toward her speech and occupational therapies, as well as her music and yoga.  As of 2014, Iris was learning new words every day.

But even with all the publicity, Iris's parents have tried to keep her life as normal as possible.  Carter-Johnson notes that nothing has changed in Iris's world, and she hasn't done interviews or been to TV studios.  Austism affects Iris in many ways, and one of its side effects is that she has trouble with social interactions and can be anxious around new people.  But she appears to have no trouble expressing herself through her many pieces of art.

Trumpet 55cm x 75cm by Iris Grace #IrisGracePainting #IrisGrace #Iris #painting #trumpet #art

A photo posted by Iris Grace (@irisgracepainting) on

You can learn more about Iris and her paintings on her website and social media pages as linked from the site, as well as from CNN, CBS News, ABC News, Buzzfeed, and other places as listed on her website.

Monday, November 2, 2015

OrCam: Assistive Technology for the Visually Impaired

We've written about emerging technology for visually impaired people before, in the form of a new, more versatile kind of "refreshable braille" display that could one day provide tangible pictures and graphs to its users.  You can read that article here.  Today we have a new piece of assistive technology to feature: OrCam, an already-available device that can help visually-impaired users by identifying nearby objects and even reading text.

The device works by taking a photo with a small camera that attaches to a user's glasses, then describing objects in the photo to the user through a small bone-conduction speaker which also sits atop the user's glasses.  This combination camera-speaker part of the unit is connected by a wire to a larger rectangular box, which can be placed in a pocket or bag.  Unlike other solutions designed for similar purposes, OrCam is completely external and does not require any implants.

So how does OrCam know when to take a photo?  It's user-activated, meaning that the person wearing it has to make a special gesture (in this case, a pointing sign) within the camera's field of view in order to activate the software's special features.  Once the photo has been taken, OrCam will analyze and attempt to identify whatever the user was pointing at.  If the object contains text (a street sign, for example, or a label or even an entire newspaper), OrCam can even read that text aloud.  Watch this video from CNN Money to see it in action:

The man demonstrating how the device works in the video above is Amnon Shashua, who cofounded OrCam in 2010 after being inspired by his wife's aunt.  He shares the story in this TED@NYC talk, saying that his aunt-in-law had macular degeneration, a condition which causes degradation of the retina and loss of vision.  Shashua says he came up with the idea for OrCam when she talked to him just after his doctoral ceremony at MIT.  A computer scientist specializing in the artificial intelligence field, Shashua initially didn't take her request for help seriously, saying that though he was a doctor now, he wasn't the kind who helped people.  But the idea never truly left his mind, and a few years later, OrCam was born.

Elements of Shashua's artificial-intelligence background are still very apparent in some of OrCam's features—the software is not limited to identifying only those objects which it has already been programed to identify, but can also "learn" to understand new objects with some simple instructions from the user.  Given time, it can be customized to suit a user's particular environment, even identifying faces (OrCam has made this video demonstrating those features).

It's not a perfect system yet; the device has trouble in low or bright lighting, cannot read handwriting or script fonts, and currently only "speaks" in English.  But Shashua and his team are continuing to update and improve OrCam, and for many visually impaired individuals, it's already life-changing.

You can learn more about OrCam in The New York Times, ZDNet, Bloomberg News, and other places as listed on their website.

Monday, October 26, 2015


The National Down Syndrome Society is a non-profit organization that advocates for the value, acceptance, and inclusion of people with Down syndrome.  Their website has a lot of information and resources, and we highly recommend checking it out (particularly their "Preferred Language Guide" page).

This week we are featuring one of the videos from the National Down Syndrome Society's YouTube account.  "Dreams" lets people with Down syndrome share their dreams and achievements with the world.  From the video description: "Dreams features people with Down syndrome of all ages talking about their aspirations and accomplishments. This inspirational video celebrates the achievements of the Down syndrome community. (2004)"

We hope you enjoy!

Monday, October 19, 2015

Frozen Light: An Immersive, Interactive Theater Experience

The smell of a forest after rain.  The sound of thunder.  The feel of wind and raindrops.  These are just a few of the features that the audience gets to experience at UK-based theater company Frozen Light's latest show, entitled The Forest.  Frozen Light specializes in creating performances for people with what is known as PMLD, or Profound and Multiple Learning Disabilities.

The theater experience can be a memorable and rewarding one, but people with different abilities cannot always experience it in the same way many others do.  In a piece published by The Guardian, co-creators of Frozen Light Amber Onat Gregory and Lucy Garland quote the UK charity Mencap:

"Any event, no matter how awesome, is unlikely to have any relevance to most people with PMLD if it takes place some distance from them."

With that in mind, Frozen Light aims to create shows than can truly involve the audience.  Small performances—shows have a maximum of six attendees with PMLD, plus one caregiver each—mean that the performers can spend time with each individual, creating a truly interactive experience.

The cast is small, too—just three performers, including co-creators Gregory and Garland and fellow actor Al Watts.  While Garland narrates, Gregory and Watts act out the story of Thea and Robin, two characters who embark on life-changing journeys into the forest.  The audience is invited along for the adventure, with the cast bringing in props for them to feel and talking or singing directly to individuals.  Inclusion is a major focus of Frozen Light's productions, yet at the same time, so is making a person not feel badly if they do not want to participate.  The primary objective is simply to create something that meets the needs of people who aren't always able to participate in the world of theatrical storytelling.

Amber Onat Gregory and Lucy Garland studied together at the University of Kent in 2006, and during their time in the Applied Performance Masters program they developed their own kind of multi-sensory theater for a group of teenagers with PMLD.  After graduation the two created their own companies, but later reconnected in 2013 to form Frozen Light.  Their first show, Tunnels, premiered last year, and tour dates (UK only) for their second show The Forest are available here.

You can learn more about The Forest and Frozen Light on their website, in The Guardian, in The Stage, in The Social Issue, and other places as listed on Frozen Light's website.

Monday, October 12, 2015

"We're more alike than different"

Just a quick post today to leave the focus on this video from the National Down Syndrome Congress.  Entitled "More Alike Than Different," it's part of the organization's More Alike Awareness Campaign, which seeks to highlight societal disparities that people with Down syndrome experience and also to dispel myths surrounding Down syndrome.  Check it out here: http://www.ndsccenter.org/more-alike-awareness-campaign/.

Enjoy the video!

Note: a version of the video with Spanish-speaking advocates can be found here.

Monday, October 5, 2015

A visit to Mt. Hood Kiwanis Camp, part 2

Our Social Media Manager visited camp this last summer to meet campers and counselors, take photos, and share the experience with you.  Read part 1 here.

After we left the pool and campsite, faculty member Carolyn Bradley continued to show me the camp.  I'm in the presence of an expert; it's Carolyn's 17th year supervising counselors here.  "I love it," she says of her work and the camp.

We start with the sites where outdoor activities take place.  Below is a tree where campers are hoisted up into the air with a harness, their weight carried by a row of campers and counselors down below.  It's a fun activity for the person being lifted and a great team-building exercise for those still on the ground.

A photo taken from the ground of a camper being hoisted into the air.  The camper is about fifteen feet off the ground, suspended by a harness and a cable that is anchored in the surrounding trees above but out of the frame of the photo.  Other campers and counselors can be seen on the ground.
A camper is hoisted into the air during one of the many outdoor activities available at camp.
 We then headed up a hill to visit the horses.  There are four full-sized horses, and the campers get to take turns riding them around a fence-enclosed area.

A photo of the outdoor enclosed area where campers can ride horses.  A white fence surrounds the rectangular area, which has a dirt and sod floor, and thick woods begin almost immediately outside the fence.  The photo is split almost exactly diagonally into a bright and sunny patch in the upper left and a shaded patch in the lower right.  Some horse equipment is hanging on the fence on the side closest to the camera, and a brown horse can be seen in the shady dark part of the image.
The campers get to ride horses around this fence-enclosed area.
There's also a miniature horse named Disco, a newer addition to the equine experience at Kiwanis Camp.  Disco came up to us immediately as we approached, calmly letting me take photos and then munching on weeds as Carolyn showed me around.

A photo of a black miniature horse peeking out of a white fence.  The fence has three horizontal rails that span the space between vertical posts; the horse’s head is sticking through the space between the bottom two horizontal rails.  Some horse equipment is hanging on the fence above and to the right of the horse.
Disco, the small horse above, is for interacting with socially rather than riding.
By then it was time for the fishing activity to start, so we headed back down to the area around Fanning Hall and to the pond.  It's a catch-and-release affair, with no fish permanently harmed.  Carolyn told me of an elusive larger fish that everyone likes to catch, and it became easy to see how a culture and a feeling of community build up here in only two-week sessions.

A photo of campers fishing at a small pond.  The camera is across the pond from the campers, and some plants with small red berries can be seen in the foreground.  The campers are in front of some trees, and behind a low wooden fence that separates them from the reflective but slightly murky water.
A pond where campers and counselors practice catch-and-release fishing.
Our final stop was the art building, a cozy space that was alive with the chatter of campers and counselors as they worked on their arts and crafts.  There were quieter corners of the room as well, and a few of the more shy camper-counselor pairs chose to do their work on some of the smaller tables around the edges.

A photo of the arts and crafts room.  The room looks like the inside of a log cabin, and has rounded beams spanning the room.  Wooden tables are arranged in a U shape, with the open side facing a large stone fireplace.  Campers and counselors can be seen using various art supplies at the tables.  A wooden staircase can be seen in the background.
The arts and crafts room was buzzing with activity when we arrived.

A photo of a corner of the arts and crafts room.  This spot is empty of people, and has an irregularly-shaped table a few feet wide in the center that appears to be made from a laminated cross-section of a large tree trunk.  It is surrounded by black cushioned chairs.  The walls look like the inside of a log cabin, and a wooden staircase appears in the background.
Even in busier environments there are places where campers and counselors can step out of the action for a moment, like this quieter corner in the art building.
The campers can work on personal projects here, but when we arrived they had a group project:  working to complete small boats for a nighttime ceremony that occurs at camp.  Here are some completed boats, with wishes of all kinds written on the sides, such as "I want to meet good new friends next year too!" and "I want to come back soon to camp," and "We wish to come back next, & get into another group, & make new friends but keep the old & feel good next year."

A photo of some of the small arts-and-crafts boats made by campers and counselors.  The boats are about a foot long.  All have small signs glued to popsicle sticks sticking out of them, along with a large sign at the front of the boat.  The sign on the boat at the foreground of this photo is written in red marker on orange paper, and is embellished with purple sequins and metallic pipe cleaners.  The sign reads, “A singing & dancing village family.”
One of the projects that can be created during the art activity is a boat like the one above, which contains wishes (written on small pieces of paper) that the campers and counselors have made.
Our tour was at an end after that, and as we stepped outside I asked Carolyn for some parting thoughts on what she likes best about this capstone.  "You know, there's a lot of publicity and a lot of sharing about how valuable this camp is for campers, and how much they get out of it," she tells me, "But a lot of people don't realize that the counselors get a lot out of it too.  They are learning a lot about themselves, they're growing, and they're becoming people who know more about someone with a disability and are more comfortable around people with a disability.  And that's gonna continue to affect them throughout their life, whether it be with their family or their community or in the workplace.  They're forever changed."

Special thanks to Mt. Hood Kiwanis Camp and Carolyn Bradley.

Monday, September 28, 2015

A visit to Mt. Hood Kiwanis Camp, part 1

Welcome to fall term, everyone!  Many of you completed your capstone (or some elective credits) at Mt. Hood Kiwanis Camp last summer, and we would love to hear about your experience.  Please feel free to tell us about your time at camp here in the comments, or on our Facebook page. 

For those of you who haven't been to camp, however, we wanted to give you some more information about what the location is actually like.  Our Social Media Manager made a trip out to camp last summer to explore the site, take photos, and chat with some of the staff and counselors.  A write-up of the experience appears below.  (If you have any questions, feel free to leave them in a comment here or on Facebook; we'll be checking the comments frequently this week, and will try to answer any questions.  Also, let us know if you like this post, and if you want us to publish Part 2.)

A Visit to the Mt. Hood Kiwanis Camp Capstone
Last August, on an unseasonably warm summer day, I made the hour-and-a-half long drive from the Portland State University campus to Mt. Hood Kiwanis Camp.  Carolyn Bradley, a faculty member at camp, would be meeting me at Fanning Hall, which I'd been told was "the large brown building with the green roof."

A photo of the outside around the Fanning Hall building at Mt. Hood Kiwanis Camp.  The building appears in the background, low and long, with a sloping green roof.  Many large wooden picnic tables are in front of the building, with several campers and counselor seated at each.  Several other people are gathered between the picnic tables and Fanning Hall.  Most wear pick or light-colored shirts, some dark purple, and a few bright green.
Fanning Hall, the main dining hall and administrative building, during a time when outdoor activities were scheduled.  (Image courtesy of Mt. Hood Kiwanis Camp.)  

The campers and counselors were out for activities when I arrived, so I had a few moments to myself before Carolyn could meet me.  The campsite itself is lovely, nestled deep within the trees, and there was a kind of innate peacefulness that made me feel not simply like a visitor among the forest, but a part of the forest itself.  I headed up the dusty path to Fanning Hall.

A photo of the path at Mt. Hood Kiwanis Camp.  The path arcs around in a circular formation, forming a kind of large island in the center of the photo; on the right of this island are several large picnic tables.  Various buildings can be seen around the outside of the path.  Layers of green fir trees can be seen in the background and surrounding the path, and above them a blue sky and a low, wispy white cloud.
The path that runs throughout most of the camp.  Fanning Hall is just to the left of where this picture was taken, and the same tables shown in the photo above can be seen on the right.

The dining hall, too, was empty when I arrived, so I asked the nurses who work in an immediately adjacent room to use the walkie-talkie and let Carolyn know I was there.  All of the staff here seem to have a walkie-talkie.  It's the easiest way to talk to someone who's not nearby; cell phone coverage is spotty at best.

A photo of the interior of a large room at Fanning Hall.  The room is empty of people, and chairs have been placed upside-down on the long tables running across the length of the room, the chairs’s metal legs pointing up in the air.  A few paper lanterns hang suspended on wires above.  High on the walls of the room, yellow and purple flags hang.  The ceiling is wooden and angled, coming to a point in an inverted “V” shape, and it is supported by several wooden beams.
Interior of Fanning Hall.  Nurses are on hand for the duration of the capstone, and their office is also in this building (it's just visible on the right side of this photo).

Carolyn arrived soon after, introducing herself to me in a professional tone.  She gave me a primer on the capstone's origins (which you can learn more about on Mt. Hood Kiwanis Camp's website here), and then we were off to tour the camp.
Our first stop was the pool, which was specially made to be accessible.  A long ramp runs the pool's length, and a special water-safe wheelchair is provided.

A photo of the swimming pool at Mt. Hood Kiwanis Camp.  A white tent is visible in the foreground of the photo, and behind it, the pool and several campers, counselors, and staff wearing swimsuits and playing with inflatable pool toys.  A wheelchair ramp descends down the long side of the pool.
A wheelchair-accessible ramp into the water can be seen at the far side of the pool (a water-safe wheelchair is provided).

A woman in a wheelchair came up to us before we left, and she and Carolyn chatted and exchanged pleasantries for a moment before we moved on.  Carolyn explained to me as we walked that some of the campers here need only physical assistance, some only assistance with mental tasks, and some with both.  All are welcome at Kiwanis.

A photo of Mt. Hood Kiwanis Camp attendees smiling into the camera.  The person on the left has long wavy blond hair braided close to their head and is wearing a purple Mt. Hood Kiwanis Camp t-shirt; the person in the center has short hair and glasses; the person on the right also has short hair and glasses.
All people with different abilities are welcome at Kiwanis Camp.  (Image courtesy of Mt. Hood Kiwanis Camp.)

We passed a campsite and some single-person tents as we continued on, which prompted a discussion of the living arrangements at camp.  There are several different spots that counselors stay in during the summer, some of them indoor but most of them outdoor, with many students opting to bring their own tents from home.  Sleeping locations are preassigned, but Carolyn tells me that needs can be accommodated—one year, a pregnant counselor needed to be near the restroom, and the camp was happy to provide such an arrangement.

A photo of a selection of small different color tents nestled between tree trunks.
A small selection of counselor's tents, some brought from home, at one of the campsites.

We moved on to see other activities, and even met a tiny horse, but that's another story.  Please let us know in the comments or on Facebook if you'd like us to continue this series!

Have a happy and healthy fall term, everyone.

Monday, August 10, 2015

Kiwanis Camp Capstone featured on PSU's homepage!

A screenshot of the homepage of Portland State University.  There is a photo of three canoes on a lake, each one filled with people.  Behind the canoes, green fir trees stretch until Mt. Hood appears looming in the background.  On the left of the photo a semitransparent blue banner is overlayed, reading “A powerful partnership.”  Below this is a semitransparent white banner, reading “Kiwanis Camp capstone pairs PSU students and campers with special needs.  Learn more.”

The Mt. Hood Kiwanis Camp Capstone is currently being featured in Inside PSU and displayed on the college's homepage at www.pdx.edu.  The story spotlights undergraduate student Joe Beck and his experience at camp, and features quotes from program coordinator Ann Fullerton and graduate assistant Molly Moran about PSU's oldest continuing capstone.  If you're thinking about taking the capstone next year or just want to know more, this is a great place to start!

Read the article here.

Monday, August 3, 2015

Infant with Down syndrome signs with modeling agency

Micah Quinones only a year old, but he already has a head start into a possible career.  Diagnosed with Down syndrome when he was three months old, the toddler was recently signed by the same modeling agent who represents his fashion-model mother Amanda Booth.

Tooth pain? Fruit popsicles to the rescue!

A photo posted by Micah Quinones (@lifewithmicah) on

Before Micah was diagnosed, Booth and her husband Mike Quinones had started an Instagram account for him called "Life with Micah" as a way to share photos with friends and family.  Soon, more and more followers came, finding it through Booth's own already-popular Instagram account.  The transition to modeling was natural; Booth says that Micah looks right into the camera as soon as it comes out, and that everyone tells him he's just like his mother.  The Instagram account didn't start out as an advocacy project, Booth notes, but it continued to grow in popularity after Micah's diagnosis, and he now has more than 39,000 followers. 

Micah's parents were first told that he might have Down syndrome by a nurse soon after his birth, who suspected the condition after noting Micah's almond-shaped eyes and folded ears.  Since these features could have been genetic or a result of complications during the pregnancy, however, Booth and her husband didn't see the need to take the four vials of blood from their newborn that would be needed for the test.  There had been no indications before Micah's birth, either; he displayed none of the heart defects many babies with Down syndrome have, and Booth and Quinones had opted not to do a prenatal screening, agreeing that the results wouldn't change anything. 

Last year 4th of July, and today. Thank you America, my family appreciates you. 🇺🇸

A photo posted by Amanda Booth (@amanda_booth) on

At their pediatrician's recommendation three months later, however, they did have the test completed.  Booth says that while she shed some tears and was scared at the diagnosis, not personally knowing anyone with Down syndrome, she soon realized that no number was going to change what she thought about her son.

Keep them wild. #drivewaybombs

A photo posted by Amanda Booth (@amanda_booth) on

Booth has also said that one of her goals in sharing photos of her family is to bring hope to other families who are also affected by Down syndrome.  Connecting with such families through Instagram has been very helpful for her, she says, and has enabled her to follow along with their journeys and milestones as she experiences her own.  Already called a spokesperson for Down syndrome-related causes by Mother Magazine, Booth still says she hopes that her involvement in the community will continue to grow.

You can follow Micah on Instagram here, and learn more about his and his family's story in Mother Magazine, Today.com, ABC news, Pregnancy & Newborn, and Buzzfeed.

Monday, July 27, 2015

An exclusive interview with Professor Julie Esparza Brown

A few weeks ago, we wrote here about a grant that Professor Julie Esparza Brown won from the US Department of Education.  Last week we sat down with the lovely Professor Brown herself for an exclusive interview about the grant, the program it helps fund for special educators, and how PSU is in a unique situation nationally in the special education field.  We hope you enjoy!

A photo of the park blocks at Portland State University.  In the right foreground, a black sign appears with gold lettering spelling out “PORTLAND STATE UNIVERSITY.”  There is a line of small purple pansies in front of the sign.  In the background are widely spaced rows of trees, their leaves just beginning to turn yellow and orange.  Brown leaves lightly cover the green grass of the park blocks.
Image courtesy Kkmd/Wikimedia Commons

Mt. Hood Kiwanis Camp Question: Let's start with the basics.  Will you please tell us about the grant you recently won from the U.S. Department of Education?
Julie Esparza Brown Answer: Sure.  Okay, the grant that we got is a five-year 1.25 million dollar grant from the Office of Special Education in Washington DC.  And it is to train students who are from underrepresented groups to be special educators, to work with children with significant disabilities such as on the autism spectrum, or children with intellectual disabilities or severe behavior disorders.  So we will train seven students a year for a total of 35 by the end of the grant. 

Q: What led you to pursue this grant?

A: So this is, gosh, I've written several grants that we've received over the time I've been here, about 17 years.  Probably 5 federal grants.  So we know that to train diverse teachers…generally they need financial assistance.  So in order to diversify our special education field, I'm always looking for funding opportunities to be able to help with their tuition expenses.  So this was another great opportunity.  We had a grant through a different federal office that ended two years ago, it was also a five-year grant to train bilingual special educators, so this is another similar one so that we can get people in the field that we really need to be able to meet the needs of our ever-changing population. 

Q: Why should a student consider enrolling in the program at PSU?
A: Well, because first of all it pays almost their entire tuition for getting a special ed licensure.  And again if they are interested in becoming a teacher, a certificated teacher, and their passion is working with children with disabilities, this is a great opportunity.  So we just admitted our first cohort and have a great cadre of seven students who are very passionate about the work.  Six of them are bilingual Spanish-speakers, so it's a great opportunity for them.  And they're really needed in our schools.

Q: Will a person need to already be bilingual in order to enroll in the program?
A: You do not!  But we are looking for people that have experiences across different cultural groups.  So for example, one of our new students is not bilingual, but she's had a lot of experience working in Alaska with Alaskan Native children, so for example she brings a really deep understanding of cultural differences.  So not necessarily bilingual-bicultural, but certainly experience in working across cultures and a passion for that.

Q: How do you think this grant will affect PSU and our role in nationwide special education?
A: Well, there was a article written about us, oh, maybe five years ago or so, that identified us as one of twelve programs in the nation that trained bilingual special-educators.  So, you know, there just aren't very many programs able to do the work that we're doing here, so we're just in a unique situation.  Prior to being at PSU, I was a public school educator, and I was a special ed teacher.  And then I changed school districts and was a bilingual kindergarten teacher for many years, and then went back into special ed and created a bilingual special ed classroom, so was actually able to do special ed and serve children in their native language.  And then I went back to school and added a school psychology credential, so worked as a school psychologist.  So I am firmly grounded in three fields, so it's a pretty unusual background, that I'm able to really understand how we combine the knowledge base from all the fields, to train people here or to create programs that will really help address the needs of the kids that struggle the most in our schools.  So, we're in a unique situation nationally.

Q: What do you envision PSU's role in special education will be like ten years from now?

A: Well, I'm hoping that we will be known for this kind of work, and that our programs will grow, will continue to find outside sources of funding to support diverse learners that otherwise probably wouldn't be able to afford to come back to school.  And that we'll make an impact on doing research on how we best work across language groups, so I'm just hoping that this grows and expands. 

Q: Finally, is there anything else you'd like us to know about this grant or Portland State's special education program?
A: I guess that just, it's another exciting opportunity because the students that I've worked with in the last grant and all the grants that I've worked with are so passionate.  The exciting thing with the grants that I have been involved with in the last 17 years…we've seen students that have begun as teachers, that are now rising to be top-level administrators.  So it's really neat to see kind of our family of alumni that are making a huge difference state-wide and taking those diverse experience and helping everybody to understand more about unique needs of kids across culture and language groups.  So it's very exciting work.

Our sincerest thanks to Professor Julie Esparza Brown.  We hope that some of you are interested in taking advantage of this program, and that all of you found this interview helpful.  If you apply, let us know how it goes!

Monday, July 20, 2015

The British Paraorchestra: Orchestral pioneers

On July 2nd and 3rd, 2015, the Fast Forward music festival took place in Bristol, England.  Headlining the festival was the British Paraorchestra, a group of virtuoso musicians who are no strangers to performing for large audiences—in 2012, they played with popular band Coldplay at the closing ceremony of the Paralympic Games.  But there is something special about these musicians: all have different (some even say "extraordinary") abilities. 

The British Paraorchestra is the first large-scale ensemble composed entirely of musicians who have different abilities.  Founded in 2012 by British conductor Charles Hazlewood and television director Claire Whalley, it was created in response to the profound scarcity of musicians with different abilities Hazlewood had noticed in the orchestras with which he worked.  A veteran in the field of music (he won the European Broadcasting Union’s conducting prize in his twenties), Hazlewood first observed the lacking after his daughter Eliza was diagnosed with cerebral palsy.  In twenty years of working with orchestras, he said, he realized that he remembered seeing only three musicians with different abilities.  Once he truly registered this, he started actively looking for such musicians, and those he found became the first members of the British Paraorchestra.

Today musicians in the orchestra represent a wide variety of musical talent, with instruments ranging from the ancient to the electronic.  Orchestra member Ziad Sinno represents the ancient—in addition to the violin, he also plays the oud, a Middle-Eastern string instrument.  As a blind musician, he's had trouble finding work in orchestras because he cannot read music in the traditional way; instead he listens to a piece, sometimes on a computer, and learns to play it by ear.  His fellow performer Lyn Levett represents the electronic end of the orchestra's spectrum—she uses an iPad to create her music.  Levett has cerebral palsy, and she pre-programs sound loops on the tablet computer that she can later trigger by using her nose.

Although they have different circumstances than many performers, the most important thing to the British Paraorchestra is still the quality of their musicianship.  As Hazlewood explains, one performer he talked with after a rehearsal didn't know what kinds of different abilities the rest of the performers had, and was not really interested in knowing.  To this group, the music is what matters.

You can learn more about the British Paraorchestra on their website, in the Guardian, the Telegraph, the Bristol Post, the Western Gazette, and in The Fix magazine.  A TEDx talk given by Hazlewood and featuring the orchestra is also available on TED.com and on YouTube.

Monday, July 13, 2015

The Sesame Phone: An accessible touch-free smart phone

It's a novel idea: a touchscreen smartphone, able to be used without touch.  And yet for millions of people living with paralysis (as many as 6 million in America alone, according to estimates), that is the only way to use a smartphone.  Oded Ben Dov, co-founder of the Sesame Phone's parent company Sesame Enable, started work on the touch-free phone after he received a call from Giora Livne, who had been quadriplegic for seven years.

Livne, a former Israeli navy commander and electrical power engineer, had seen Oded Ben Dov on television demonstrating a mobile video game that users could play by using head gestures.  The two did not know each other, but Livne decided to track down Oded Ben Dov anyway and ask him to create the touch-free smartphone.  Together the two took on the challenge and founded Sesame Enable, and with the help of an Indigogo campaign, they were able to make Livne's idea into a reality.

The Sesame Phone is actually a Google Nexus 5, with Sesame software installed on it that can enable users to navigate the phone's native Android platform.  The software is activated when a user says "Open Sesame," and can be deactivated when a user says "Close Sesame."  It works by using the phone's front-facing camera to track a person's head gestures.

For people who cannot usually use a smart phone without assistance, it can be hard to perform everyday tasks like making a call or sending a text with any sort of privacy.  With the Sesame Phone, Livne notes that he can finally call his wife without having listeners around.  And because of the many capabilities that modern smartphones have, he can also use it to control things within his home such as lights, television, and air conditioning.

According to Sesame Enable's website, the phone is made for people with spinal cord injuries, cerebral palsy, multiple sclerosis, ALS, and more.  In 2014, Sesame Enable won a Verizon Powerful Answers award—an award which came with one million dollars.  After the win, the company announced on their Indigogo page that they had decided to donate all funds raised through the page to devices that will go to people in need.

You can find out more about the Sesame Phone and Sesame Enable on their website, or on Forbes, Today, Wired, Business Insider, Engaget, and other places as listed on their website.