My top 5 authors discussing disability

I am pleased to introduce Allison Mulder as a guest blogger today. Allison, a writing and rhetoric major at Northwestern College in Iowa, is supporting Easter Seals’ communications team as a public relations and social media intern. We are lucky to have this creative writer interning with our team leading up to her December graduation.

by Allison Mulder

TIWIEI may be a PR intern this semester, but creative writing is my passion—especially when it comes to books for young people. Here’s a peek into my Twitter feed for some of the authors I think of first when I think of disability in fiction:

  • Anne Ursu I’ve loved this author’s books for young readers ever since I read Breadcrumbs, a book based off of “The Snow Queen.” The Real Boy earned an even stronger place on my favorites shelf. Oscar, the main character, has autism, but the story’s otherworldly fantasy setting makes an official diagnosis impossible. Ursu has a son with autism, and many people—with and without autism—recommend this book as an example of good representation. That aspect (plus beautiful writing and a fascinating plot loosely related to “Pinocchio”) make this a read I highly recommend. Click here for an interview with Anne about The Real Boy.


  • Ava Jae I actually met Ava Jae at a young writers’ conference this summer, where I heard enough about her young adult science fiction novel, Beyond the Red, to get excited for its March 2016 release date. About a week later, I saw Ava’s blog post about being diagnosed with rheumatoid arthritis at twenty years old. Ava regularly participates in excellent discussions about disability in fiction, including this blog post about how harmful it can be for stories to imply that the only happy ending for a person with a disability is a “Miracle Cure.”


  • Marieke Nijkamp Another 2016 debut writer, Nijkamp has lots of hype building for her upcoming young adult novel, This is Where it Ends, about the circumstances surrounding a school shooting where “everyone has a reason to fear the boy with the gun.” I’m intrigued, and can’t wait for its release in January. I’ve also loved hearing Nijkamp’s thoughts on disabilities and how they’re addressed in fiction, especially as they relate to her own autism. Nijkamp is the founder of Diversify, which features interviews from marginalized individuals. She is also Vice President of Finance for We Need Diverse Books, another campaign for increased diversity in fiction.


  • Kody Keplinger You may have seen the recent movie based on Keplinger’s young adult book, The Duff. But not everyone may know that Keplinger was born legally blind. According to the Disability in Kidlit website — which Keplinger co-founded—she was diagnosed with Leber’s Congenital Amaurosis at age eight, leaving her with poor light perception and tunnel vision. I’m constantly tuning in when Keplinger discusses disabilities and their fictional representations on social media, and you can check out Disability in Kidlit for reviews and more in-depth discussion about the portrayal of disabilities in children’s fiction.


  • Corinne Duyvis Another co-founder of Disability in Kidlit, Corinne Duyvis was diagnosed with autism at age 14, and ADD at age 23. I have heard all kinds of buzz about Duyvis’s young adult fantasy book, Otherbound, and am long overdue in getting my hands on it. I’ve also avidly followed her on Twitter for some time, so I was excited to find that she’s been previously featured by Easter Seals when she participated in a Twitter chat for Thrive, our community for young women with disabilities.

Now, please, tell me (and the rest of the internet) who I’ve missed, and who we should read and/or follow next.


Organizations Mobilize to Help Underserved Women Veterans

veterans-430jc052711As a leading provider of services for veterans, Easter Seals is on the front lines when it comes to identifying the needs of our returning service men and women. We recently released a Call to Action white paper asking policymakers to recognize an urgent need: greater funding support for our female veterans.

It is a well-documented problem. In “The Independent Budget, Veterans Agenda for the 114th Congress,” leading veteran organizations highlighted a disturbing disparity between services provided for returning women versus their male counterparts.

“Despite a government that provides an array of benefits to assist veterans with transition and readjustment following military service,” wrote the authors, “serious gaps are evident for women in every aspect of existing federal programs.”

And, as concluded in the Easter Seals white paper, these gaps and other barriers to accessing community-based reintegration services are impeding the successful transition of female veterans into civilian life.

A recent study found that women veterans continue to experience “stubbornly high” unemployment rates, a known precursor to poverty. The U.S. Department of Veterans Affairs (VA) estimates that 10 percent of women veterans live in poverty and that, for those between 17 and 24 years old, nearly two of every 10 veterans is impoverished.

Women veterans are also the fastest growing segment of the homeless veterans population and are up to four times more likely to be homeless than non-veterans. Many face the same issues as returning male veteran including psychological, physical and social trauma relating to their military service. Affordable child care is ranked the highest unmet need of female veterans and the majority of homeless housing for vets restricts or does not allow for children.

These needs are urgent and growing. Women comprise approximately 20 percent of newly enlisted recruits. They are also one of the fastest growing veteran segments, making up one-fifth of the veteran population. An estimated 200,000 female veterans will transition from military to civilian life over the next several years.

So how best to address the growing needs of our female vets?

In its 2014-2020 strategic plan, the VA recognizes the importance of “partnering with organizations that can best provide what we cannot or should not” and leveraging “productive partnerships to augment VA care.” Research by the Center for a New American Security (CNAS) found that “the most effective community reintegration models…are those that base operations at a credible, local nonprofit organization that coordinates and deploys both public and private resources” for veterans and their families.

Easter Seals has long been just such an agency partner, providing a highly effective model of support for our returning female servicewomen.

Our care coordinators take a holistic approach, embracing not just employment and housing concerns, but also physical and psychological needs during transition, focusing on the individual needs of each veteran. We know the value of emergency financial aid and have initiated a Women Veterans Financial Assistance Project. We are experts at leveraging community resources for our female veterans and provide ongoing, preventative services after the initial transition period.

But with increasing numbers of female veterans returning to their communities in need of support, now is the time to expand these partnerships to increase gender-specific programs and improve quality of care for women veterans.

Federal policy makers must authorize and fund federal care coordination program grants to community-based organizations, such as Easter Seals, that provide crucial local support to women veterans.

Congress should fully fund existing community care coordination programs that now benefit women veterans such as the Homeless Veterans’ Reintegration Program (HVRP), Supportive Services for Veteran Families (SSVF) Program, and the Rural Veterans Coordination Pilot (RVCP). These programs must be given long-term authorizations.
Finally, Congress should expand veteran reintegration programs to reserve a portion of the funding for grants targeted at the unique and growing needs of women veterans. State policymakers should similarly increase funding of programs for female veterans and fund asset-mapping and coordination to ensure funding for these vital programs.

Programs such as those provided by Easter Seals are in place to meet the needs of our returning servicewomen, but we must be given the means to grow them if we are to remain effective partners in support of our veterans.


12 different ways to say disabled

handicapped-Parking-signOur son Gus was born with a genetic defect called Trisomy 12p. I never liked referring to him as “disabled,” and when he was in elementary school I dodged the d-word by referring to the other kids at the school as “average.”

“Gus is in a self-contained classroom most of the day,” I’d tell other parents. “But he eats lunch and goes to music and art classes with the average kids.” I was pleased with the way that phrasing turned the word-game on its head. I hoped it gave them an idea of how it felt to hear a child referred to by a title you didn’t care for — few parents think of their children as “average.”

There’s a lot of discussion on social media now about the use of the term “disabled” to describe someone who has an impairment that sets them apart from the majority. A post on BBC’s Ouch blog Wednesday explained what the discussion is all about.

The post defined “dis” as having a primitive, negative or reversing force. “To discredit. To disengage. And in recent parlance “diss,” with an extra “s”, has been popularized as an abbreviation of disrespect – don’t diss me.”

The post points out that “dis” is not a prefix people want to put on a child, or on themselves, either. “It is, after all, inherently negative.” Potential replacements for describing someone as “Having a disability” were peppered throughout the post. I’m listing them here along with terms I’ve heard bandied about as well:

  • having a dis-ability
  • having a disAbility
  • differently able
  • special
  • with special needs
  • different
  • mutant
  • humanly different
  • unable
  • inspirational
  • possessing a form of human variation
  • having a reality to be accommodated

So what do you think? Is there a word or phrase on this list you prefer using when referring to someone with an impairment that sets them apart from the majority? Can you choose a favorite from this list? Tell us in the comments, and if you have any others to suggest, please leave them in the comments, too. I’m all ears!


7 easy ways to make your websites more accessible

laptop with Easter Seals logoOne last tech post before September comes to an end –this one is a primer on making websites available to people with disabilities.

Well, actually, it’s about making web sites accessible to people who have visual impairments. I’m blind and know a fair amount about this subject. Here are some tips:

  1. Avoid layering red and green or blue and purple. Those colors can be indistinguishable to some readers who are color blind (take a screenshot of your page and a site called Vischeck will let you preview how it might look to someone who is color blind).
  2. Use high contrast. If the background is light in color, make sure to use a dark text color, and vice versa. This doesn’t just help your readers with visual impairments, it makes reading easier for just about everyone.
  3. Make sure your font size isn’t too small. Tiny text is hard for anyone to read, and it can be impossible for some people with visual impairments. 14pt is a good font size for anyone, and 10pt text should be the absolute minimum.
  4. Use headings. Large headings can help some readers with low-vision find their way around a site, and screen readers (like the one I use to write and edit these blog posts) can scan through content more efficiently if headings are there to break the text up some.
  5. Use high-contrast with links, too. If the color of your links are much different than the rest of your text, they’ll be easier to spot.
  6. Avoid links that say “click here.” Screen reading technology allows blind readers to jump from link to link, and if the link only says “Click here” that’s all we hear when we’re jumping around like that — we don’t know where “here” will take us.
  7. Avoid putting text inside images. If a reader with a visual impairment enlarges the graphic to read what’s inside, the Text in the image gets blurry and difficult to read. Screen reading software reads text on the screen out loud, but it can’t read text inside images, leaving people like me who are blind in the, ahem, dark.

Like I said, I am particularly familiar with tips for making sites accessible to people who are blind or have low vision, so I rely on you readers to comment with ideas of ways web designers can make sites and blogs more accessible to people who have other disabilities. Together we can help designers create accessible sites for all


Guess how people who are blind can text?

Woman-texting-atbeachWe’ve published a few blog posts about technology in September, and I’m rounding out the month with this one about how I text people without being able to see.

Plenty of people who are blind type out text messages using VoiceOver, the speech synthesizer that comes with every iPhone (VoiceOver parrots every letter the blind user types into a text message). I’ve learned how to use VoiceOver but I find it cumbersome to hunt and peck to type texts when I can’t see the letters on the screen.

Siri to the rescue! I’m guessing Siri might be particularly helpful for older adults who are diagnosed with macular degeneration, so I’m offering step-by-step instructions here. If you are blind and have an iPhone, or you are helping someone who is blind use their iPhone, you need to make sure you have VoiceOver turned on. Go to the post I wrote about how people who are blind use iPhones to learn how to turn VoiceOver on.

Got VoiceOver on? Okay, now for my “Text with Siri” lesson. For this lesson, I assume you already have some people in your “contacts” list, so we’ll start with learning how to turn Siri on.

  1. Press down the home key to get your iPhone going –that is the big round button (well, It’s about ½ inch in diameter, I guess) right below your iPhone screen. You can actually feel this button go down if you press it, it’s a real physical button.
  2. Double tap anywhere on the screen to unlock the screen. VoiceOver will call out “screen unlocked.”
  3. Swipe your pointer finger quickly from the left of the screen to the right of the screen a few times until you hear VoiceOver call out “settings!”
  4. If you get overzealous and go past “settings,” swipe your finger from the right side of the screen to the left to go back until you hear “settings.”
  5. Once you’re sure you’ve heard settings, double tap anywhere on the screen to activate settings.
  6. Now swipe your pointer finger quickly from the left of the screen to the right of the screen over a few times until you hear VoiceOver call out “general!”
  7. Double tap anywhere on the screen to activate the “general” button.
  8. Swipe your pointer finger quickly from the left of the screen to the right of the screen a few times until you hear VoiceOver either call out “Siri on” or “Siri off.”
  9. If VoiceOver says “Siri on” that means Siri is already turned on.
  10. If VoiceOver says “Siri off” you need to double tap on the screen, and when it says “Siri on” you know Siri is on.

Phew. Still with me? Okay, Siri is on your phone now. Here’s how you use her to send a text message.

  1. Hold down the home button (remember that’s the button you can feel below your phone screen) and keep holding it down until you hear a double bell sound.
  2. Don’t let go of that button! Hold it down while you tell Siri who it is you want to text (if the person you want to text isn’t in your “contacts,” you can say their cell phone number). For this exercise, I said, “Text Jackie.”
  3. When you are finished giving your command, release the button.
  4. You won’t have to hold the button down anymore, Siri knows you’re there now. you’ll hear another double bell tone, and Siri will ask, “Okay, what do you want to say to Jackie?”
  5. Remember, you don’t have to hold the button down anymore, just hold the phone and tell her what you want to text. For this lesson, I simply said “Practicing.”
  6. Siri comes back to tell you what your message reads “Your message to Jackie says, ‘Practicing.’ Ready to send it?”
  7. You say “yes.”
  8. Siri says, “Okay, I’ll send it,” and sure enough, in a mere second or two, you hear a whoosh sound. Your message is sent.

You can say no to sending, of course, and I’ve even learned how to change the wording when I misspeak or cancel the message altogether. But that’s a lesson for another post. To find out if anyone has texted you back, hold down that button and tell Siri, “Read my messages.”

One last tip: If you are not blind and have been helping someone try this out, all you have to do to take VoiceOver off your iPhone is tell Siri, “Turn VoiceOver off.” She’ll do it for you. TTFN!



1 thing all women can learn from the NY Fashion Week model who has Down syndrome

Runway model with Down syndromeI am pleased to welcome Rachel Gaddis as a guest blogger today. Rachel is a junior majoring in mass communications at Ouachita Baptist University in Arkansas. She is supporting the development department as a public relations and corporate relations intern. Rachel, a strong writer with a passion for current events, will be interning with us until December.

by Rachel Gaddis

As much as I love being fashionable, I can’t say that I have ever had much of an interest in New York Fashion Week. I have a stereotypical idea of what it is like: a thin runway, size zero models, expensive clothing pieces that I would never think of putting together (or wear out in public!).

I even scrunch my nose a bit at the idea of the models on the runway. Why do they do it? I remember the few times I considered being in a pageant. Five seconds of thinking about subjecting myself to others’ critiques was all it took for me to back out. If I am already so critical of my appearance, why would I want the world — or even the people in my small hometown — looking at me?

But then, at this year’s New York Fashion Week, an 18-year-old named Madeline Stuart walked in the New York fashion show for FTL MODA. More noticeable than the Hendrik Vermeulen she was wearing was her confidence. It was evident in her poise, faint smile, sure steps, and high-fives with spectators halfway down the runway. With literally the world watching her, she was owning her beauty. This young woman is braver than I could ever hope to be — I can imagine I would have been feeling pretty sick and might have even tripped over my toes!

Madeline Stuart is an Australian model with Down syndrome whose modeling career took off after her Facebook pictures went viral earlier this year. She is the second young woman with Down syndrome to walk in NY Fashion week (behind actress Jamie Brewer) and is pursuing modeling as a career. She hopes to change people’s perception of Down syndrome, to stop discrimination, and most of all to encourage everyone to love and be loved.

In an interview with Cosmopolitan, Madeline’s mom said this about her daughter’s growing popularity: “You know why Maddie is so loved? Because she loves herself. Maddie truly loves herself.” My heart sank when I read those words. I have the worst self-talk of anyone I know. I am ashamed to say how much I compare myself to other women, how much I agonize over what I believe others think of me. I can’t say that I truly love who I am or that I consider myself beautiful.

But then I look at Madeline’s pictures on her website and social media accounts,and I see a young woman who can claim something much more valuable — and lasting — than perfect hair, the best body, or the cutest wardrobe. I see a beautiful human being who has struggled and overcome. I see a girl who refuses to believe she is anything less than amazing. I see self-acceptance. I see hope.

Madeline reminds me that I have a choice. I can choose to throw away the narrow view of beauty I have clung to for so long, and all the comparisons that come with it, and choose to love myself. Regardless of whether people will love me because of that, I need to love and own who I am.

So thank you, Madeline Stuart! You are changing the way the fashion world defines beauty, and, perhaps more importantly, the way we as women see ourselves.


Understanding Down syndrome


Experiencing architecture with a disability

Beth touching the museum signGuess who spent Saturday afternoon playing the very same piano architect Frank Lloyd Wright practiced on 100+ years ago?


The Frank Lloyd Wright Trust is one of 31 cultural organizations that are partners in Chicago’s ADA 25 for 25 Cultural Access Project, and to celebrate the 25th anniversary of the Americans with Disabilities Act, the trust is offering special ASL and touch-tours of its historic sites.

The goal of the 25 for 25 Project is to help at least 25 cultural organizations in Chicago commit to improving accessibility for visitors with disabilities in 2015 in some concrete way, and then putting plans in place to continue to take steps to improve accessibility after this anniversary year.

Last Saturday my friend Linda Downing Miller, who lives in Oak Park, Illinois, accompanied me on a special tour of Frank Lloyd Wright’s home and studio there. Linda earned an M.F.A. from Queens University of Charlotte — her fiction is forthcoming in Fiction International and appears in the current issue of Crab Orchard Review. She’s a fine writer, and I was delighted when she offered to write this guest post describing our tour from her point of, ahem, view.

Beth playing Frank Lloyd Wright's piano

Beth playing Frank Lloyd Wright’s piano

Touching moments in architecture

by Linda Downing Miller

Twenty years ago, I was infatuated with the architect Frank Lloyd Wright. Moving to Oak Park, Illinois, can do that to you.

The village has a wealth of Wright-designed spaces, and I toured as many as I could in my first years here. My husband and I must have taken every visitor we had through Wright’s home and studio, restored to its appearance when he last lived there in 1909.

When Beth invited me to go with her on a Touch Tour of the home and studio last Saturday, I said yes mostly for the chance to spend time with her. I figured I’d already seen and heard enough about Wright’s work: his horizontal lines and ribbon windows and half-hidden entrances, reached by walking a “path of discovery” that usually includes a turn or two.

The Touch Tour took me on a new path. I was one of a handful of people accompanying friends or family members who are blind or have low vision. The Frank Lloyd Wright Trust offered the tour in honor of the 25th anniversary of the Americans with Disabilities Act, part of ADA 25 Chicago — a larger project to improve the quality of life for people with disabilities. Being Beth’s companion on the tour, alongside her Seeing Eye dog, Whitney, allowed me to “re-see” Wright’s spaces and consider the challenge of making them accessible through other senses.

Beth feeling some sculptured parts of the exterior of the building

Beth feeling some sculptured parts of the exterior of the building

Fellow writers might appreciate this observation: details, creative comparisons, and specific word choices helped to convey Wright’s work. Our tour guide, Laura Dodd, explained the position of design elements in relation to bodies (“about neck high”). She used similes (wood beams arranged “like an asterisk”). I told Beth that Wright’s intricate, wood-carved designs on the dining room and playroom ceilings were a bit like the wooden trivets she’d felt in the gift shop. A tour volunteer described the vaulted ceiling in the children’s playroom “like a whiskey barrel.”

After thinking about Laura’s description of the way the Wrights’ piano sat in that room with only the keyboard showing, the back half hidden behind the wall, one of the visitors who couldn’t see articulated it more clearly for all of us: “You mean, it’s embedded in the wall.” Yes.

Enthusiasm, curiosity, puzzlement and understanding moved across people’s faces as they listened and asked questions, and as they touched things: fireplace tiles, wall coverings, sculptures, spindles, glass windows and Wright’s famously uncomfortable straight-backed dining chairs. Some people lingered over each touch opportunity. Others eagerly applied their fingers and moved on. (Guess which style was Beth’s?)

She and I talked afterward about the different frames of reference people might have brought to the experience. Beth knew something about architecture before she lost her sight. Other visitors may have been born blind. Laura is the Director of Operations and Guest Experience for the Frank Lloyd Wright Trust, and she asked us for feedback during and after the tour. (The Trust plans additional Touch Tours, and American Sign Language Tours, at its historic sites.)

Our group’s consensus was that she’d done a wonderful job. I thought the three guide dogs in the group also handled themselves well in close proximity.

One of the highlights for me and Beth was when Laura invited her to sit at the piano in the children’s playroom. After instructing everyone else not to pay attention, Beth put her fingers on the keys and ran through a short, jazzy tune. When she’d finished, she and I exclaimed over the fact that Frank himself no doubt played those keys. I felt the ghost of my old infatuation. On our way downstairs, Beth reached up to touch the back end of the piano, suspended over our heads, and continued on her path of discovery.

Photos courtesy of Christena Gunther, Founder & Co-Chair of the Chicago Cultural Accessibility Consortium.


16 ways to make your kitchen more accessible

luxury-kitchens-with-white-cabinets-designApproximately 30 million Americans use wheelchairs, and all of those people and their families need accessible housing. That number will continue to increase as seniors retain independent living in their homes. One important way to increase independent living is making a home accessible, and one room that is especially important to accommodate is the kitchen.

With all the advances in accessible design, a beautiful and efficient kitchen can be designed to be accessible for everyone that lives in a home whether or not they have a disability. Here are a few tips to consider when designing an accessible kitchen for wheelchair users:

  1. Typical countertops are positioned at a height of 36”. To make countertops accessible the work surface should be installed at a 34” height, but ideally you would measure individual comfort ranges to determine the appropriate height for the person using the wheelchair or walker.
  2. Include pull-out shelves in your design — a shelf that comes out of the countertop can provide an easily accessible working space to prepare food.
  3. Kitchen sinks should have an open space beneath them to provide wheelchair or walker accessibility. Knee clearance for a sink needs to be at least 27” high, 8” deep at the knees or 11” deep for children.
  4. Place the drain in the rear of the sink so the piping underneath will not prevent a person in a wheelchair from rolling underneath.
  5. Choose a single lever faucet — they’re more accessible.
  6. Touch control faucets are also available –they allow the user to turn on and off the faucet with one touch.
  7. Installing the faucet to the side of the sink may make it more accessible for some people.
  8. Electric powered adjustable kitchen wall cabinets that lower and raise the cabinet height with a touch of a button are costly, but they can make the cabinets accessible to more users.
  9. Spice racks and cutting boards and other often-used items should be placed within arms reach.
  10. Looped cabinet pulls are easier to use than standard knobs — no need to close your fist or twist, grasp or use pinching motions to use a looped pull.
  11. A 36” wide doorway makes the kitchen accessible for a wheelchair or walker user, but 42” width is more comfortable.
  12. A lever-style handle will make a door much easier to open.
  13. Use swing clear hinges on doors to make traveling through the opening easier.
  14. Raise the dishwasher 6” to 8” off the floor to make the dishwasher accessible from either side and increase access.
  15. Bottom-drawer freezer style refrigerators give wheelchair -users access to the freezer.
  16. Tactile controls such as raised buttons or dials with directional indicators that click into position at each setting can increase safety.

I have the INDATA Project to thank for suggesting devices like the touch control faucets and electric powered adjustable cabinets I mentioned in this post. the Indiana Assistive Technology Act (INDATA) Project started in 2007 when Easter Seals Crossroads partnered with the State of Indiana, Bureau of Rehabilitative Services to increase access and awareness of assistive technology.

As you can tell from this post, there are many ways in which a kitchen can be made accessible for wheelchair users — get cooking!

Here are ways to find, buy or adapt an accessible home.



This device lets my child speak with her eyes

Bernhard Walke’s guest post earlier this month mentioned that their daughter Elena receives assistive technology services at Easter Seals DuPage & the Fox Valley Region and is learning to use a device I hadn’t heard of before. He’s back again this week to explain how Elena uses her beautiful eyes to communicate with the help of a Tobii Dynavox Communicator.

by Bernhard Walke

Headshot of young Elena and her big brown eyes


One compliment our daughter Elena receives most often is about her deep caramel colored eyes. My mother-in-law calls them “ojitos peruanos” or Peruvian eyes. Elena inherited them from her mother and her grandfather – my wife Rosa and my father-in-law.

To me, Elena’s eyes are bright, expressive, complex, and mysterious. My daughter’s eyes are a passageway to her mind. She sees them as more than aesthetic — they are the tools she uses to communicate.

Elena is nonverbal, so she uses her eyes to “point” to objects to indicate her choices. Does she want milk or juice to drink? Would she prefer to wear a blue dress or a purple dress to school? Additionally, looking up is an affirmative response and looking to the side or down is a negative. Movements such as this get us through the mundane day-to-day life, but Elena is 4 years old now and will be starting kindergarten next year. Her communication needs will be more complex.

In preparation for starting school next year, she has been working with a Tobii Eye Gaze computer, which is essentially a computer that tracks her eye movement. As a result, she is able to say things such as, “I have a question,” “That’s silly,” or “Something hurts.” She also works on identifying colors, zoo animals, and how to spell her name.

Considering that Elena does not have the oral muscle control to form words at this point, the possibilities are very exciting for us as parents. Elena realized the power of her words when she brought her Tobii to school for speech therapy and kept selecting the “Something hurts” icon. Her teachers and aids asked her questions and Elena responded, “I feel sick.”

“Do you think you need to go home?” inquired her teachers.

“Yes,” Elena responded.

Her grandparents were called to pick her up and Elena was infuriated. She loves school and didn’t want to leave her classmates. Elena turned out to be fine, and we laugh about the situation now, but we realize that this might have been one of the first times in her life that she realized that her voice was heard and what she said mattered.

When I explain what the Tobii allows Elena to say just based on the recognition of her eye movement, people are amazed with its capabilities and the fortune of living in a time when such technology is available. However, the device does come with challenges. Like myself, Elena is a raging extrovert and loves to be in the middle of the action. The Tobii, although it gives her a voice, creates a physical barrier between her and her audience. Just like her dad, she would much rather be face to face than face to screen.

The Tobii has some of the same shortcomings that other computer devices have: battery life, weight, lack of user friendliness, the time it takes to boot up, and so on. But despite all of its shortcomings, technology is an incredible tool for my daughter. This was demonstrated over the summer when her speech pathologist tracked me down at her extended school year program. She wanted to show me how Elena was using a Tobii to spell on a computer. Elena was learning to spell her name. “EEEEELLLLLLEEEENNNNNAAAAAA” was printed on a piece of paper.

The speech therapist mentioned something that we seldom hear, and her words confirmed what I’ve known for years. “Playing with letters like this is developmentally appropriate for her age.”


Do pwd have more grit? Take this Grit Test to find out!

Angela Duckworth talks about the Grit Test

Angela Duckworth talks about the Grit Test

Our local NPR affiliate WBEZ substituted special programming for their regular shows on Labor Day this year, and an episode of the Ted Radio Hour they aired caught my, well, my ear. The episode was about success – what the word means, and what makes us successful:

Success has become synonymous with how much money you make and how high you climb the career ladder. But in what way can we define success beyond those boundaries? In this hour, TED speakers share what makes for an accomplished life.

Psychologist Angela Lee Duckworth was one of the speakers. She is an assistant professor in the psychology department at University of Pennsylvania, and after studying rookie teachers in tough areas to see which ones would last the school year; kids in spelling bees to predict who would go farthest; cadets at the West Point Military Academy to predict which would finish their training; and corporate salespeople to predict who would keep their jobs, she determined that “grit” is a better indicator of future success than factors such as IQ or family income. If that’s true, I know a lot of people with disabilities who oughta feel pretty dang successful right now, because man oh man, do they have grit.

In Angela’s TED Talk, she defined grit as:

  • having passion to complete goals
  • having perseverance for very long-term goals
  • having stamina
  • sticking with your future, day in and day out

“Grit is living life like it’s a marathon,” Angela said. “Not a sprint.”

The TED Talk emcee did mention that listeners could take the grit test at home, so I decided to use my talking computer to check it out. The quiz asks you to answer questions in relation to people in general rather than in relation to just the people you hang out with. It asks you to rank yourself (5 for “sounds just like me” or 1 for “not me at all,” for instance) on questions like how much a new idea or project distracts you from the one you’re working on now, whether you finish what you begin, whether you’d describe yourself as diligent or not, etc.

In the end the quiz calculates you on a scale from 1 (not gritty) to 5 (extremely gritty). My grit score ended up as 3.88.

“You are grittier than at least 70% of the US population,” it said.

Does that qualify me as a success? I don’t know. One thing I do know is this: people with disabilities do tend to have more grit than average people, and I don’t need a quiz to tell me that!