UCP would like to congratulate our 2015 Awards for Excellence winners! Thank you for your hard work and dedication you show to our affiliates organizations and people with disabilities and their families in your communities. These amazing programs and people will be honored at UCP’s Annual Conference in Chicago May 20-22.
What do YOU know about UCP? We’re a network of affiliated nonprofit organizations working to ensure a Life without Limits™ for both children and adults with a broad range of disabilities and their families.
Tell Us More About The UCP Network.
UCP’s approximately nearly 80 affiliated organizations range from large providers like Gillette Children’s Specialty Healthcare in Minnesota, to smaller but no less impactful organizations from New England to California. Our affiliates’ influence can be felt as far away as Canada and Australia.
Each organization acts independently to provide the advocacy, support and services needed in their communities. Many have programs in place to address direct needs for therapy, housing, transportation, employment and family support. Many spend time advocating for public policy changes at the local, state and even national level. Many work to raise awareness of the issues facing people with disabilities and their families, and all work to secure the necessary resources to carry out UCP’s mission.
Who, Exactly, Do You Serve?
UCP is proud to serve people with a range of disabilities, their families, and by extension their communities. Sometimes, you will hear that 65% of the people served by UCP affiliates have disabilities in addition to, or other than, cerebral palsy. While percentages vary by affiliate and can change over the years, the truth is that UCP places a priority on serving people in need, regardless of diagnosis. UCP providers typically serve people with the most severe and multiple disabilities.
At the national level, UCP advocates for change in public policy. And, we work to raise awareness of the major issues common to many people with disabilities: access, resources, support and respect. At the local level, UCP affiliates work hard to provide the supports and services most needed in their communities. Their capacity to serve is only bound by the resources they have available.
If You Serve People with All Disabilities, Why Are You Called United Cerebral Palsy?
We are proud of our heritage. United Cerebral Palsy’s name has a long history, going back to 1949. In the 1940s, there were not many options for families of and people with cerebral palsy and other disabilities. What began as the brainstorm of a few parents of children with cerebral palsy quickly grew in to a nationwide crusade to improve the lives of people with all disabilities. From it’s inception, UCP brought issues about cerebral palsy and other developmental disabilities to the forefront of the national media.
While the words “United Cerebral Palsy” do not fully express the scope of our work, UCP has served as a trusted name for millions of people for more than 60 years. As with many iconic brands, which have grown and evolved over time, the true heart of our identity lies in the associations people make when they hear our name, not in the name itself.
Why Don’t You Just Focus on Cerebral Palsy?
Because more than 176,000 people rely on UCP every day. If we can advocate for a public policy that provides access to more affordable housing options for with disabilities, should we apply that policy only to people with CP? If we can encourage respect for all people, should we only try to put an end to bullying against children with CP? If we can inspire an innovator to design a device that is more accessible, should we insist that only people with CP be able to use it? United Cerebral Palsy works hard to help individuals overcome barriers to a Life Without Limits™, and we have found that sometimes the biggest barriers of all are the ones that come with assigning labels and defining limits.
Intensive Two-Day Event from UCP’s Life Labs Coming to Chicago
United Cerebral Palsy (UCP) Life Labs initiative will bring an intensive, two-day design challenge called an Innovation Lab to Chicago May 19-20, 2015. Following successful events in London, Washington DC, and Sydney, Australia, the Innovation Lab (formerly called Enabled by Design-athon) brings together people from all walks of life under the principles of Universal Design to dream up the next big idea for people with and without disabilities.
At each Innovation Lab, this diversity of talent from a variety of fields is coached to use human-centered Universal Design concepts to solve every day problems as part of a competitive yet collaborative design challenge for team prizes. Designers, engineers, inventors, makers and hackers as well as professionals and caregivers in the disability field are all encouraged to contribute their unique perspectives to the process.
The inaugural Innovation Lab scheduled for Chicago will take place at the Microsoft Technology Center and will be co-hosted by Smart Chicago. Smart Chicago is a civic organization devoted to improving lives in Chicago through technology by increasing access to the Internet, improving skills for using Internet, and developing meaningful products from data that measurably contribute to the quality of life of residents in the region and beyond.
“Here at Microsoft we are focused on improving the lives of citizens through technology,” said Shelley Stern Grach, Director of Civic Engagement at Microsoft. “The Innovation Lab focuses on the principles of design to provide opportunity and access to technology for diverse communities, and we’re excited to see what the teams come up with.”
Teams will design and build prototypes or present plans that demonstrate how products can rapidly be created to better fit with people’s lives and needs, no matter what those need may be. UCP’s Life Labs is intent on creating a movement of accessibility for the masses so that mainstream products work for as many people as possible, including those with disabilities and older people. The Innovation Lab events are meant to challenge preconceptions of assistive equipment, showing how products can be personalized, purposeful and beautifully designed too.
“Rather than continuing to retrofit our world to accommodate people with disabilities, there’s no reason why we can’t design our world to work for people of all abilities,” said Marc Irlandez, Director of UCP’s Life Labs.
Registration is now open at http://ucpinnovationlab.org/ Space is limited.
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The following blog post was contributed by Wendy Katz, who has Asperger’s syndrome, in the hopes that her personal story will raise awareness of the inner struggles of people who live with an “invisible disability” during Autism Awareness Month. Asperger’s is a mild form of autism spectrum disorder.
Some Castles Have Deep Moats
You probably know me.
At least you’ve seen me around town. I look just like any other soccer mom after all. I have matched clothes and cared for hair, and I go with my soon-to-be-stepdaughter and fiancé shopping at the mall and to the movies like anyone else. I had affluent parents and a good education. I was quiet and shy but sweet and was in the chorus and the National Honor Society in high school. I went to college and got a job, gave polite smiles to my coworkers in the hall and maybe even chatted you up at a cocktail party. I had a marriage that sadly ended in divorce and survived it stoically. I am sure that you know me, or think you’ve met someone just like me.
But the truth is that you don’t really know me at all. Like millions of others, I have what is called an “invisible disability.” Invisible disabilities are those that one cannot see on the surface. Many intellectual and developmental disabilities (I/DD) fit into this category, such as learning disabilities, mild autism spectrum disorders like Asperger’s syndrome, and mild cerebral palsy. I’m a “Passing Aspie” – one of the ninjas of the invisible disability world. You have to know us fairly well to ever see our truth.
I coined the term “Passing Aspie” (short for Asperger’s). Asperger’s syndrome is a mild form of autism in which a person can speak clearly and has an average–to-devastating level of intelligence, but goes through life with social difficulties and often sensory issues. Even if you think you don’t personally know anyone on the autism spectrum, you have seen “The Big Bang Theory” and understand the portrait of Sheldon that is being painted there.
Passing Aspies are different. We are the people on the autism spectrum that you do not see wearing a visor to avoid fluorescent lights. We have learned to adapt, and honestly I doubt there are any accurate numbers on how many of us are out there because we rarely get formally diagnosed. That said, our inner brains and inner lives share autistic traits, and you cannot know our challenges unless we tell you. So today, in honor of Autism Awareness Month, I agreed to try.
Eyes and Excuses
More likely than not, you have noticed that people on the autism spectrum have difficulties with eye contact and visual recognition. I wasn’t diagnosed with Asperger’s as a child but I spent my childhood at war with my eyes. I have always been (and still am) visually unobservant and often use my other senses to compensate. I am nearsighted in the extreme but do not feel a need to wear glasses because my sensory world is still rich in so many other ways.
I spent my childhood with total face blindness, but I didn’t know what to call it. I never heard the term until I was old enough, through painstaking neural rewiring, to recognize at least the faces of those I saw frequently and the people I loved. (I still can’t recognize familiar actors in movies sometimes if they change their makeup or hair.) I learned to say the things that people expected to hear to explain why I couldn’t make friends in preschool. I was “bad with names” and couldn’t remember them. I was shy. Or, I “didn’t need friends.” Or the “other kids didn’t like me.”
The truth was both more obvious and far scarier: I couldn’t recognize anyone. If I played with a little blonde girl on the playground one day, I had no way of ever finding her again. I had no words to explain this because I was unable to comprehend why this was. I just figured that other children were smarter and better at seeing visual cues. I would try to tell my mother, but I doubt she ever understood the whole truth. I am sure that other children thought I was snobby or weird for pretending like we had never played together before, and so I was lonely.
The eye problem most commonly associated with people on the spectrum is, of course, eye contact, and I have that problem too. People always ask me why I can’t make eye contact. Actually, I can and do force myself to make at least brief eye contact with others as part of my passing act. But extended eye contact is emotionally painful if I am not truly intimate with you. The closest I can get to describing how it feels to me to meet someone’s eyes is to compare it to the feeling you would get if asked you to stare at a stranger’s naked body for several minutes. It feels embarrassing, awkward, invasive and socially wrong. I can hold my mom’s gaze or my fiancé’s (I do see him naked after all), but socially it just feels embarrassing. So I let people think that I am just shy.
In many ways, the hardest part about dealing with Asperger’s both as a child and a passing adult is sensory overload. I use my ears to compensate for my eyes and am better at recognizing people’s voices than faces. I am also a great mimic with an audiographic memory. This came in great handy for school lectures or eavesdropping (I got away with this like you wouldn’t BELIEVE.). But there is a dark side to sensory sensitivity!
I cover my ears while during fireworks and was afraid of the hairdryer until I was five years old. My sense of taste was way over the top along with my sense of smell, causing sensory pain that most of you cannot even imagine. On hot days in enclosed spaces, I would feel that I was suffocating because I could smell the individual odors of every person in the room. All of those different smells mixing together would make me dizzy, but what could I do? I was aware enough to know that no one else could smell what I did and that no one would believe me.
I gag at the bitter taste in vegetables. Needless to say, adults weren’t buying my explanation and accused me of faking it. Fruits have very strong smells that overpowered. me. For nutrition, I had to take vitamins and eat baby food well into the first grade. That ended after a friend told our whole class at school.
But these are only minor challenges compared to some of the invisible demons that come with my invisible disability.
Invisible Moat, Invisible Alligators
I have often been asked about the worst part of being on the spectrum. This is where the monsters come out. Sexual abuse is very common among people with intellectual and developmental disabilities (I/DD), three to four times more likely than for children without disabilities. When you realize that one in every five women is in the U.S. is sexually assaulted as a minor, you can see that many people with invisible and visible disabilities alike are sexually assaulted every day. I was no different.
When I was nearly six years old, my mother hired an ordinary female babysitter to watch me for during the summer while she and my father worked. Unfortunately, the sitter was a predator, and I was in no state to defend myself or report her. I totally repressed the memory for many years after struggling in vain to comprehend what was happening. The pain was right beneath the surface though, and when you can’t speak about your pain or even understand what happened to you, the effect is devastating.
I know you are wondering what kind of person would put their byline on an article that included this detail, and I will tell you. It’s a person determined to break the silence. I had many strikes against me when it came to getting help and healing for my abuse. Questions that parents normally ask children to get them to open up completely went over my head. I didn’t even understand that what I was forced to do was sexual abuse; I saw it as punishment and figured it was normal. And, I lacked the courage and the words to confront any adult’s behavior as “wrong”.
I want to let you know that although it is difficult to know if a person with an invisible disability is being abused, it is not impossible. Look for signs and read between the lines. We are human, and we do feel pain. For example, a scared child that is at a loss for words and calls her babysitter “mean” may be trying to tell you something, especially if she doesn’t verbalize negativity often. You may also notice that under the stress of abuse, the invisible disabilities in your child multiply. From age 6 on, my self-esteem plummeted. I developed claustrophobic behaviors and panicked if I had to wash my hair under the shower. I also spent larger amounts of time alone in various hiding places around my home. In addition to my increasingly apparent posttraumatic stress disorder, I suddenly began suffering from obsessive-compulsive disorder, and began to behave erratically and suffer nightly insomnia. In another child, these would have been extreme warning signs, but because my behavior was somewhat odd to begin with, due to the autism, people let this go as more evidence of my disability.
So what I just described is a far cry from being a Passing Aspie you say. Well, that took many years and a lot of hard work on my part. I focused hard on grounding techniques, which helped me to mentally stay in the room with my classmates and break out of my dissociations. I worked up the courage to make one or two close friends, and as I fought to memorize their faces, the fog in my neural pathways lifted, and I began to see other faces. I practiced friendly facial expressions in the mirror until they felt less awkward. I traded homework help for social comfort.
By high school, my hard work had begun to pay off. New neural pathways took over my brain, and being social began to feel more natural. When I cracked under the stress of completing an extra hard course load with obsessive-compulsive disorder and became clinically depressed, I was finally got the treatment and medication I needed. One of my psychiatrists even figured out that I was on the autism spectrum. It was too late to truly benefit from services at that point, but knowing that I had a real disability and wasn’t just defective as a person helped me to forgive myself. I am proud of the work I did to make my life come together.
I have never been more proud of myself than the day I earned my Masters degree in Social Work and walked across the stage at George Mason University. I held several jobs working in foster care placement, a homeless shelter, and a nursing home and am proud to say that I never once got singled out as an Aspie or told that my work was impacted by my disability.
Am I Magic?
I get asked about “special” talents often. People want to know if I can do magic tricks like multiplying large numbers in my head or know what day of the week November 12th, 2028 will be. The honest but disappointing answer is that I do have a savant talent, and I just told you all about it. Being a Passing Aspie is harder than it looks. I don’t have the genius of many on the spectrum, but being me requires conjuring more strength, endurance and effort than you know. I noticed that unlike a lot of people my age, who typically sleep seven to eight hours a night, I need nine or ten hours to feel rested. I believe that this is the extra energy that my brain uses to filter out the sensory distractions and social challenges so that I can pass successfully.
By the time you notice the horrible beeping noise coming from the microwave at McDonalds, it has been hurting my brain for five minutes or longer. I no longer hear it, however, because my mind subconsciously noticed this immediately, determined that it was enough to make me crazy, and filtered out the noise. Also, the energy it takes me to make casual conversation with acquaintances and make eye contact while doing it would rival what it takes nuerotypical people to give a high-level presentation at work. My trick is that you don’t see it.
What Do You Mean, I Lack Empathy?
My biggest complaint as a Passing Aspie is listening to people go on about how people with autism lack empathy. Excuse me, but says who? Isn’t what you really mean that people on the spectrum don’t understand how YOU are feeling??
The truth of the matter is though that you don’t understand how people on the spectrum feel any better than we understand you. More than half of the time, you don’t even spot me hiding in the crowd. Before you reject this theory, ask yourself if you could do what I do every day of my life and pass in a room full of people on the autism spectrum the way I pass among you. Didn’t think so!
I don’t want to criticize neurotypical people. It’s just insulting and hurtful me to hear that I am believed to lack empathy when my best savant talent has been to develop empathy at such a level, that I cannot only pass as neurotypical and live in your world but very often translate between people on the spectrum and people who are not and represent both with a startling degree of accuracy.
If you have read this far, I want to thank you for having the empathy to hear my words and relive my struggles with me. Please show this empathy to others with invisible disabilities and imagine them walking in very uncomfortable shoes. If you truly can’t do this with compassion, then please keep it to yourself and do not talk about what you think you know about my autistic brothers and sisters.
UCP is thrilled to announce that the chair of our national Board of Trustees, Gloria Johnson-Cusack has been selected to head the National Human Services Assembly as its new president and CEO beginning in April. The Assembly is a Washington, D.C.-based organization comprised of nearly 90 national nonprofits and is focused on shaping public dialogue and building capacity for the human services sector. Gloria has served on the UCP Board for several years, becoming Chair in October, 2014. We are proud to have a leader of her caliber helping guide UCP. Read more below from today’s press release from the National Human Services Assembly.
National Human Services Assembly Names Johnson-Cusack as New President and CEO
WASHINGTON, March 2, 2015—The National Human Services Assembly, a D.C. based organization composed of nearly 90 national nonprofits, announced the selection of Gloria Johnson-Cusack as president and CEO effective April 6, 2015.
“Gloria’s stellar record in leadership positions across the nonprofit, for-profit, and governmental sectors gives us complete confidence that she is the right person to continue to grow the National Assembly’s ability to deliver, both for its members and for society at large,” said Cindy Lewin, executive vice president and general counsel at AARP, and part of the search committee at the Assembly.
Brian Gallagher, president and CEO of United Way Worldwide and standing vice chair of Leadership 18 echoed Lewin’s sentiment, “Gloria is well-suited and well-prepared to lead the Assembly. She is all about collaboration, knowledge sharing and innovation within the nonprofit community.” Gallagher continued, “I’m certain she will draw on her years of experience working with our CEO cohort. Together at Leadership 18, they have tackled the toughest community and leadership challenges of the day.”
Johnson-Cusack brings more than 20 years of expertise informed by leadership positions in the private sector, charitable sector, U.S. Congress, federal and municipal government, national presidential campaigns and the White House. Before joining the Assembly, she was executive director of Leadership 18, which is an alliance of CEOs responsible for leading the oldest and largest human services nonprofits. Almost all Leadership 18 organizations are members of the Assembly.
“I have proud working-class roots and feel a deep, personal sense of responsibility to create more opportunities for more people. The status quo is not good enough,” explained Johnson-Cusack.
“At its heart, that’s what the Assembly is about and it is my honor to champion change in partnership with these passionate, innovative leaders.” Johnson-Cusack is national chairman of the board of trustees for United Cerebral Palsy. She served as senior vice president at GMMB, a D.C. based strategic communications and advertising firm where she advanced social and health causes on behalf of key nonprofit organizations, foundations and national associations—from improving supports for low-income students completing college to advancing diversity in the practice of law and medicine to addressing obesity nationwide.
In the public affairs arena, Johnson-Cusack served as director of the Office of Congressional Relations at the Peace Corps, special assistant to the President in the White House Office of National Service, and director of constituent relations at the Corporation for National Service. She was chief of staff for the D.C. Office of the Inspector General and was policy advisor to Congresswoman Eleanor Holmes Norton and Senator Albert Gore, Jr.
Johnson-Cusack holds a bachelor’s degree from Columbia College, Columbia University and a master’s degree in public administration from the Key Management Program at American University. She is a founder of the Eli J. Segal Citizen Leadership program at Brandeis University.
“I’ve been impressed with Gloria’s willingness and ability to forge coalitions among very diverse partners nation-wide,” stated Adam Meyerson, president of the Philanthropy Roundtable. “She demonstrated this ability in our shared advocacy to protect charitable tax incentives for the last few years. She listens and looks for shared interests and goals.” Meyerson added, “The philanthropic community needs more of that.”
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About the National Human Services Assembly The National Human Services Assembly, a D.C. based organization comprised of nearly 90 national nonprofits is focused on shaping public dialogue and building capacity for the human services sector. Assembly members, and their local service networks, collectively touch, or are touched by, nearly every household in America—as consumers, donors or volunteers. They comprise a $62 billion sector that employs approximately 1.2 million workers operating from 100,000 locations. The Assembly facilitates a robust learning community among nonprofit professionals and provides group purchasing services to more than 3200 organizations.
Stefanie Boggs-Johnson is owner of Stefanie Lynn Creations and published author of “I See You, Little Naomi.” In addition to being a parent and mobile cosmetologist, she is a crew supervisor for adults with special needs, working as the on-site job coach at a local grocery store. She also volunteers for Djanai’s Angels Special Needs Prom in North Hollywood. She is currently training to facilitate beauty classes for American Cancer Society’s “Look Good, Feel Better” program. She and her family live in Concord, California.
March is National Cerebral Palsy Awareness month. For many families like mine, there is cerebral palsy (CP) awareness every hour and day. As a mother of an in utero stroke survivor diagnosed with right hemiparesis CP, this “mama bear” ended up on a grief roller coaster ride that included the dark lows of despair and the heights of determination.
The story I share with you today is a result of the whirlwind of emotions, adjustments and new endeavors that swept up my family upon my daughter’s birth. And it is about the choices I made, which resulted in a new perception and passion for life.
I had no issues during my pregnancy with my daughter Naomi, who is now six years old. No one saw any signs of medical trauma until the day I went to the hospital to check on the baby in my womb, who was normally very active but had stopped moving. After an emergency c-section on March 18, 2009, Naomi immediately suffered from multiple seizures per hour due to a stroke at seven months gestation. She was not expected to survive.
However, she did survive and is living proof that miracles do happen. She defied a grim diagnosis, eventually achieving each developmental milestone, and causing a ripple effect of new priorities, joy and choices in many people’s lives– including mine.
I became a parent consumed with therapy and medical appointments, pharmacy and emergency room visits and tears. As overwhelming as it all was for my entire family, I knew I had to maintain my sanity. The pain and despair that overwhelmed me at times could not stay! I had to do something! I had to turn my daughter’s trial into a testimony that would help others jump off their own personal roller coasters.
So, I took action to help other special needs families. I began by making hair accessories and other crafts. And, I returned to my lifelong passion of writing children’s books – about my daughter, of course. Then, in 2013, (at the age of 43!) I went to beauty school to become a mobile cosmetologist, jumping onto an entirely new roller coaster. As a mobile cosmetologist, I visit the homes of people with disabilities who may have difficulty going to a salon for a hair appointment or other grooming needs.
I’m now on an extraordinary path filled with priceless rewards, such as the multiple visits to the home of a tenderhearted teenage boy with autism, gaining his trust and eventually getting his permission to cut his hair. The round of high-fives with his parents was pure joy. This task, to which most others don’t give a second thought, was a real dilemma for this family. To be able to offer a service that relieved their burden made it all worth it!
As with anyone’s life path, mine has its bumps and bruises. But these are offset by meeting wonderful people, seeing the good that still exists in this world and knowing that I somehow added to that good. Sometimes, the circumstances of our lives aren’t what we originally ordered but they can turn into so many miracles. My hope is that all who read this will see the miracles in their lives, no matter what the day may bring. May the pain of letting go of old dreams turn into a passion for new dreams to come true!
Even with 8 ½ feet (not inches – feet) of snow on the ground, UCP of MetroBoston has been able to keep most programs and services operating smoothly. Primary concerns were insuring staff could get to and from work and consumers safe and sound.
CEO Todd Kates said “Staff has done an incredible job insuring the well-being of the individuals we support.”
Check out these amazing images from one of UCP MetroBoston’s apartment complexes. This is after staff shoveled the roofs to keep them from collapsing under the weight of the snow.
At 14 years old, Srijay Kasturi was the youngest person ever to compete in the Enabled by Design-athon innovation challenge held last November by UCP’s Life Labs program. Along with his mother Sudhita, Srijay was on the winning team which came up with an idea for an app for people with autism. UCP was thrilled to discover that Sirjay was an inventor with another concept, called STRIDE, already in progress. Although he has no personal connection to disability, his creations have centered on the concept of helping people with disabilities better navigate, and as a result, participate in the world. In this interview, Srijay describes his motivations and the evolution of STRIDE for people with visual impairment.
UCP: When did you first realize you had an interest in innovating with technology?
SRIJAY: I have no idea when I realized I had an interest in innovating. My parents say that I have been thinking of creative solutions for day-to-day problems from a young age. One of my first innovations was around the age of 12, so about 2 years ago, and I’ve just been going since then!
UCP: What was your inspiration for STRIDE? Do you know someone with vision impairment?
SRIJAY: No, unfortunately (or fortunately!) I don’t know anyone with vision impairment. STRIDE is really the evolution of one of my old(er) inventions, the Camera Centering Tripod Mount (CCTM). Once I finished my proof of concept for the CCTM, I submitted it to the Discovery Education 3M Young Scientist Challenge where I, and the CCTM, were selected to be finalists in the competition. Once selected, I worked with a mentor from 3M, Dr. James Jonza, to develop the CCTM further. However, once I started working, my mentor and I discussed if there was a way for the CCTM to help more people… and from there, STRIDE (stepwithstride.com) was born. STRIDE eventually went on to win 3rd place in the competition, and well, the rest is history.
UCP: Tell us how it came to be and how you envision it working for people.
SRIJAY: I envision people using STRIDE in their everyday lives, 24/7. They put it on when they put on their shoes, and walk around all day using it. STRIDE alerts the user to any objects in their path. The closer the object the stronger the alert. One of the advantages of STRIDE is that if the user changes shoes they can move the device from one pair of shoes to another. STRIDE involved a lot of hard work, and a bunch of trial and error. They say to do anything, it takes 1% inspiration, and 99% perspiration! This is definitely the case for STRIDE
UCP: Is this your first invention?
SRIJAY: Nope! STRIDE is based on an older invention of mine and shares a lot of the same ideas with said older invention. Since childhood my dad has encouraged me to think creatively and outside the box which has led to innovation and inventions.
UCP: What other areas of design and technology interest you?
SRIJAY: Hmm… that’s a tough one. I love programming software, to the point that I used programming to finish an English class project – an innovative approach to English class! I love web-design, and I have created various dynamic websites using the Flask framework for the backend, and the Bootstrap framework for the frontend.
UCP: How did you hear about the November 2014 Enabled by Design-athon event?
SRIJAY:In March of 2014, there was a Mini Makers Faire, in Northern Virginia, near where I live. I was one of the Young Makers at the Faire and Mr. Patrick Timony from the D.C. Public Library stopped by my table to learn about STRIDE. Mr. Timony is their Adaptive Technology Librarian. He told me about the Design-athon and encouraged me to register.
UCP: What motivated you to want to attend?
SRIJAY:When I realized that the aim of the Design-athon was to help people with disabilities, I realized that it would be a great event to go to, not only to help me understand what I needed to do with regards to STRIDE, but to meet other like-minded people, including the great people here at UCP! The event gave me a better understanding of the challenges faced by people who have disabilities and how many things we take for granted.
UCP: Tell us about your team, idea and experience at the event.
SRIJAY:My team, called Stars at War, consisted of 8 people. We all came from various viewpoints, and different perspectives, so we each brought something unique to the table. Our idea was a product called Simplyfi. We learned that people with autism sometimes take take idioms literally. Simplyfi helps translate hard-to-understand idioms into simpler easy-to-understand straightforward English.
For example, if you say that the Design-athon was “a piece of cake”, a person with autism may think quite literally that the event was a piece of cake, while we’d understand that by a “piece of cake,” you really meant it was very easy. To help alleviate this problem, we built an app that defines these idioms, so that they can better understand the figurative language.
UCP: Are you interested in developing this idea further – possibly bringing it to market?
SRIJAY:Yes I am! There still is a lot of work that needs to be done for the programming of Simplyfi. However, I have been so busy developing STRIDE that I really have not had much time to focus on Simplyfi and finish programming it – but I do intend on finishing it sometime in the near future!
There is also a competition called DECA. For this event we have to write a marketing plan for a product and my partner and I decided to write a plan for Simplyfi. Here’s to hoping we move on to ICDC (International Career Development Conference)!
UCP: What is the status of your current project?
SRIJAY:I decided to revamp STRIDE so it would better fit the needs and wants of the visually impaired. I would like it to be Bluetooth-enabled so access to building maps etc. via an app are available to users. For STRIDE to be more sleek, I am working on a hardware redesign using smaller components. I’m looking for advice in the fields of case-design and software to make the device more accurate and usable. I would also like to consult with a patent attorney and look into funding sources so I can take STRIDE to production. My goal is to have STRIDE ready for market by the end of the year. This of course, will mean getting some help in the area of marketing, if anyone wants to collaborate with me.
UCP: Do you collaborate with anyone on your ideas?
SRIJAY:Yes! There are two amazing Facebook groups that I just love. The first is Hackathon Hackers (HH), a group of over 1000 people dedicated to helping others write programs and compete at hackathons. Also, I am a part of a Facebook group called High School Hackers (HSH). HSH was created for the sole purpose of getting high schoolers interested in programming, and attending hackathons. Aside from Facebook groups I am also heavily involved with a makers space in Reston called Nova Labs. Nova Labs is a great place full of people who are extremely knowledgeable about all kinds of things. In fact, I owe most of the success of STRIDE to Nova Labs, since I have learned so much from the mentors there!
UCP: Tell us more about your thoughts on open-source and why you would want to keep a part of this invention proprietary?
SRIJAY:I believe that open-source is the future. Open-source projects basically allow for improved sharing of ideas, and allows for these ideas to help the most number of people. I decided to release enough of STRIDE for anyone to create it, but I am keeping enough of STRIDE proprietary so that I can still sell a unique product and have control over it’s pricing and future development.
UCP: What are your plans for the immediate future? Your career?
SRIJAY:I am a freshman in highschool so a lot of my efforts are dedicated towards learning and doing well in school. I am also studying Sanskrit, an Indian language, learning to play the Mridangam, an Indian classical instrument, and I am a 2nd degree Black Belt in Tae Kwon Do. In the immediate future I would love to take STRIDE to market. Making Simplyfi available as an easy to use Google chrome extension is another goal. I also want to pursue a career in filmmaking, so we’ll see how that goes…
Lorraine Cannistra is an author and speaker who was once a “poster child” for United Cerebral Palsy in 1974. UCP was founded by by Leonard H. Goldenson, then-President of United Paramount Theaters and ABC Television. He used his television background to establish very successful fundraising telethons and advertising campaigns featuring “poster children” with obvious physical disabilities. As you will read in her brutally honest account, this part of UCP’s history was a very different time. UCP is proud of the work we did during that era to help people with disabilities and their families, much of which was supported by telethon donations. But it did have a negative impact of children such as Lorraine, so we are equally proud that she chose to share her experience with us to make a powerful point. You can read more from Lorraine at www.healthonwheels.wordpress.com or contact her at lorrainecannistra.com.
When I look at the picture now, I can see it so clearly. I can see the braces. The braces were made of metal and leather and weighed more than I did. They were cumbersome and hideous and confined my movements almost as much as a straight jacket. My pigtails, new dress and big smile only magnified the orthopedic braces. And that was the point. I was not only crippled, but I was cute too, and that combination made for a perfect picture of pity. The image said, “Look at me. I can’t stand upright without braces and the aide of crutches. Isn’t that sad? Isn’t it tragic? I can’t run or play hide and go seek. My life is full of heartache and so much pain that you must want to look away. You want to create distance between you and I. That’s okay. It is only fate that made your kids strong and healthy. Does that make you feel guilty? I have an easy fix. You can donate money to United Cerebral Palsy so there won’t be as many kids like me. That way you have done your part and you can sleep peacefully tonight.” Donation cans were all over town, with that picture plastered on the front. People could throw in their spare change and not have to think about me anymore.
It was all lost on me at the time. As a six-year-old kid, when I was chosen to be poster child for United Cerebral Palsy in Bergen County New Jersey, I was excited. I thought it was cool. I thought it was important. I thought it was an honor.
My parents have told me a story repeatedly about the year I was poster child. Halfway through the year, my orthopedist told them I didn’t need my long leg braces anymore. They had served their purpose and were no longer necessary. Back in 1974, the powers that be at United Cerebral Palsy told my parents that I could not be photographed as poster child unless I was wearing the braces. They didn’t think I looked pitiful enough without them.
In the forty plus years since then I have thought often about their motivation. On the surface I can sort of see that at the time the idea was to raise as much money as possible, and back then the most effective way to accomplish that was to pull hard on the community’s heart strings.
What I don’t understand is why nobody at UCP considered the potential damage of what they were doing on me. Didn’t anybody realize how demeaning it is to be the object of somebody’s pity? Didn’t they know that by trying to make people feel sorry for me they were making sure the playing field was never going to be equal? They were making a division between the “us’s” and the “them’s” of society. It has taken me a while to erase that line. Some people will never let me do it completely.
The other thing I believe happened in the year when I was poster child was that I began to internalize that message. I began to see my physical weakness as a deficit that was going to limit what I was capable of in life. That was the goal of the picture. The sad part is, in the process, it rubbed off on me.
Do I think that being poster child has really stopped me from doing what I want to do? No. But I will admit I have struggled with confidence and having a positive self-perception. There have been many times when that struggle has gotten in my way. Honestly, I don’t know how much of that comes from the fact that I was poster child forty years ago. There are times even now when I go to a restaurant with friends or out to the grocery store and people look at me with pity. Some still avoid eye contact or watch me struggle and want to look away.
Ironically, these days I have a career as a writer and public speaker. The main topic I explore is disability awareness and empowerment. I figure if I can tell a group of people something they didn’t know about disability or maybe challenge some negative perceptions a bit, then there is potential for some kids with disabilities not to experience some of the things that I did. If that is the outcome, then I can live with all I went through.
When I look at the UCP website today, I am convinced that the organization and I have the same goals. We want people with disabilities to be seen in a context of power not pity, and we want the community to view those with disabilities with a “one of us” attitude.
When I get ready to speak, I feel this odd mixture of nerves and excitement, and get so worked up that sometimes I think I am going to be sick. But at that point, I take a deep breath, exhale slowly and examine the crowd. I make a point to make eye contact with as many people as possible.
My message is simple. “Look at me, I am just like you.”
In the mid-90s, United Cerebral Palsy of Oregon and Southwest Washington changed the way it served people with disabilities seeking employment. The old model – offering “sheltered” employment in a workshop setting run by UCP – gave way to a new emphasis on finding opportunities for individuals to work at businesses in their communities.
In 1998, Jeff Corwin worked with a UCP Employment Specialist to land a job at Erickson’s Automotive in Lake Oswego. He started off coming into the shop three days a week to help owner Bill Erickson clean up tools and move garbage and recyclable metals to their proper containers.
16 years later, Jeff is as loyal to Erickson’s as ever. In addition to his commitment to his employer, Jeff has earned his Master Recycler certification and now volunteers his spare time to help a nonprofit organization with its recycling. Bill Erickson’s life and business have been impacted for the better as well. Erickson said that working with Jeff was a “blessing in disguise.”
Although UCP’s Employment Specialists established systems and written instructions to help Jeff be successful, he still needed verbal instructions from Bill. But once Bill understood how Jeff worked best, he was able to put Jeff’s near-photographic memory and attention to detail to work for the business. Jeff’s work ethic and reliability are also valuable assets to Bill in a small business where young, inexperienced workers tend to come and go quickly.
The current iteration of UCP of Oregon & Southwest Washington’s employment service, Employment Solutions, began in 2006 through a grant which allowed for just one full-time Employment Specialist supporting just a dozen job seekers. Since then the service has thrived and can boast about long-term success stories like Jeff Corwin’s.
Employment Specialists each invest approximately 500 hours of training in the first year and 100 hours each year thereafter. Each one focuses on the person with a disability who they are serving as a customer purchasing their employment services, adhering to a guiding principle of personal customer service.
Program Manager Melissa Miller explains that the jobs must be community-based and integrated so that people with disabilities are working alongside people without disabilities and offer minimum-wage or better in order to be considered. As they once did with Jeff Corwin, Melissa’s team seeks to match employers with job seekers who have particular skills or talents that are valued by the employer to ensure satisfaction on both ends.