Looking Back: UCP’s Top Ten of 2014

UCP has shared many stories about people and their famililes living with disabilities this year, but these 10 deserve revisiting for their ability to capture our emotions from empathy and inspiration to innovation or even outrage. Here are the Voices of UCP blog’s top 5 stories of 2014:

#10. Hey Candidates, People with Disabilities Can Help Elect You…Or Not

#9. Enabled by Design-athon from an OT’s Perspective

#8. First Comes Love, Then Comes Marriage

#7. Ms. Wheelchair Michigan Shares Journey to Parenthood

#6. Who Cares About Ken Jennings? A Teachable Moment

#5. UCP Chats with the U.S. National Paralympic Soccer Team

#4. Austin’s Journey

#3. #HalloweenwithoutLimits Crowns Most Creative Costume

#2. Teen Gets a Yes! to Prom

#1. From an Orphanage in Africa to a Life without Limits 

 

Israel2From an Orphanage in Africa to a Life Without Limits

Going Out with a Disability: Will I Be Able to Go In?

Guest blogger Sean Gray is from Washington, DC and runs two independent record labels, Fan Death Records and Accidental Guest Recordings. He has written for local DC news outlets DCist and Washington CityPaper.

It was a November afternoon; it was a tough week as I had just gotten laid off from my day job. I decided I should probably leave my apartment, go see some friends and see a band play at a local bar/venue. I saw a Facebook event invite from a band I knew I liked, but as soon as I opened it and looked at the location, I knew I couldn’t go.

Sean Gray1

Sean Gray Performing

Sean Gray 2

Sean Gray Performing

I’m 32 and I have Cerebral Palsy. I’ve always been into music, especially not-so-well known artists. I’ve been going to concerts since I was 14 and many shows have helped shape who I am today. Music is a social experience, so it’s a good outlet to meet new people, hear new ideas, and really feel like part of a community. Some of bands who play smaller shows tend to push inclusion, which is great. The smaller performances I was going to when I was younger (and still to this day) have addressed many types of oppression. Yet, they never seemed to address disability and accessibility. I used to think my disability didn’t matter and that it wasn’t real because none of my peers were talking about it.

Going out with a disability isn’t easy. I’ve been socialized to believe that I can “do anything”. The reality is I can’t-not because I’m not smart enough or don’t have the skills-but because of the barriers put in my way because of how we treat and view disability in society. I wouldn’t question why there were stairs at a certain place, or why the bathroom wasn’t accessible because I was socialized not to. I was socialized to deal with it and view it as a part of life or some kind of hurdle that I just have to get over. I could never hide my disability, sure, but I would almost pretend it didn’t exist, especially when I was in any kind of social environment. I didn’t really start to come out with my disability until I was in my mid-20s. I started to question why people weren’t talking about my experiences, and really felt what I was going through was being swept under the rug. Maybe it was because the ADA exists, and maybe it was because there are visual reminders such as ramps, curb cuts, elevators, that people think life is now “easier” for those with disabilities, but in reality, at least for me, this wasn’t the case.

I got tired of not being able to go to a certain place because of inaccessibility. The whole idea of me just “dealing with it” started to really wear on me, and I got angry. Those with disabilities seemed to be stripped of certain feelings/experiences which can be romance, sexuality, and even anger. The angry disabled person makes others uncomfortable, and it should. Why should I have to just deal with it, or forego experiences because of this inaccessible world? While many might think “well you have friends that could help you,” it isn’t that easy. While I feel comfortable most of the time asking for help in inaccessible places, sometimes I don’t and just because I feel comfortable doesn’t mean everyone else with a disability does. Our experiences and disabilities are all different. I needed to own my disability and realize it as oppression. I don’t buy into the whole “my disability doesn’t own me” idea. This is a real oppression that needed to be recognized in my life.

If there’s one thing I have learned from underground bands is that I can advocate for myself. Instead of being angry, maybe I should call out the venue publicly and that be the end of it, but I wanted to do more. Information is power and if I could provide information on certain venues and their accessibility or inaccessibility, maybe it would help not only those with disabilities, but bands, patrons, and even the venues themselves to see who they are really leaving out at these places. I created a website containing detailed information about each venue I know in the Washington, D.C. area. This website, called “Is This Venue Accessible?,” would become a resource whenever needed. I tried to include little things that only my personal experience as someone with a disability would grasp such as: height of stairs, how sturdy are the railings, and if there are bathrooms on all floors.

While I don’t expect venues to change overnight (or even at all, especially the smaller places/DIY venues) I do believe this resource will make people think of accessibility issues they never thought of before. I hope that this site might put pressure on venues to rethink and retool accessibility in their establishments. If a bigger band or artist refuses to play their due to the lack of accessibility and the venue, it becomes a business decision. There is no one size fits all answer for accessibility. Just because I use a walker doesn’t mean what’s accessible for me is going to be accessible for someone who has a visual impairment. My disability is physical and easy to see, but that’s not true for everyone.

My dream is to have this expand beyond just the D.C. metro area. The response has been great with many people offering to help with accessible web design and even putting this all into a searchable database. Accessibility is something that still seems to be ignored. We need to start rethinking how we view disability and what it means to have a disability. In the end it’s simple: accessibility is inclusion and if we are excluding one, we are excluding all.

 

Congress Passes ABLE Act

Washington Wire

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The U.S. Senate passed the Achieving a Better Life Experience (ABLE) Act of 2014 by a vote of 76 to 16 late Tuesday evening, agreeing with the House of Representatives that the bill should become law. President Obama is expected to sign the bill soon.

The ABLE (Achieving a Better Life Experience) Act allows individuals with developmental disabilities and their families to save money tax free for their disability service needs, and allows these assets to be exclude for purposes of eligibility to receive needed government supports including Medicaid, Supplemental Security Income (SSI), and Social Security Disability Insurance (SSDI). ABLE addresses barriers to independent living because individuals’ access to certain essential government funded programs can be lost once they establish a minimal level of income and savings.

Beginning in 2015, children or adults who acquire a disability before age 26 will be able to annually save up to the amount of the IRS gift tax exclusion, currently $14,000, and up to $100,000 total while remaining eligible for public programs such as Medicaid and SSI.  The ABLE Act will allow for similar certain individuals with disabilities and their families to maintain savings accounts similar to 529 saving plans for education.

Once the President signs the ABLE Act, the federal government will issue guidance on exactly how to set up and fund ABLE savings plans.

Enabled by Design-athon from an OT’s Perspective

Guest post contributed by Clarice Torrey, occupational therapist and winner of UCP Life Lab’s recent Design-athon People’s Choice Award. 

 

Clarice Torrey

I nerded out a bit when I first saw @UCPLifeLabs tweet about the Enabled-by Design-athon in DC. I had already become familiar with Enabled by Design and UCP Life Labs through the wonderful world of Twitter, but this event was exactly what I’d been looking for. I’m an occupational therapist who works primarily with children who have cerebral palsy, and I want to blend my knowledge of disability with my passion for designing and making. Over the past 10+ years as an occupational therapist, I have designed and fabricated many adaptive aids and splints. The Design-athon felt like it was made for me.

Even so, I didn’t exactly know what to expect. Thursday morning I walked into the event at Google’s DC headquarters and was assigned to a team consisting of Jessica Bonness, an interior designer, educator and our team facilitator; Jessica Denson, an interior design student; Emily Flax, an industrial designer; Patricia Torres, a universal design student; and Reem Bagais, an interior design student. We started with empathy exercises to gain a better understanding of what it’s like to have a disability. For instance, we put on gloves to search for items in our purse and used earplugs/headphones to simulate a hearing impairment. The exercise that resonated the most with us was doing activities with limited dexterity and only having the use of one upper extremity.

Our question became this: How can we facilitate increased independence for people with limited to no use of one upper extremity? There are so many daily activities most people take for granted that are made possible or easier with two hands. We wanted a tool that could be worn or at least easily accessible to provide the stabilization that so many two-handed tasks require. For instance when zipping up a jacket, you can complete the task with only one hand, but it will probably take you longer and you might have to use your teeth or another awkward adaptation.Empathy Exercise

As an occupational therapist, I do activity analysis so often it’s become second nature. One thing I frequently tell families is that the two hands don’t have to have equal skills in order to be functional. Almost all of us have a dominant hand that does most of the work, I usually call the other hand the “helper hand.” It’s the stabilizer. We used this information to brainstorm: How do we stabilize or grip objects? How do we attach things to our bodies?

The wall and sticky notes quickly became our friends.

As the word wearable was written on the wall, Emily saw it as “we are able” and we quickly decided that was our team name. We continued brainstorming.

Emily took the lead and we began adding to our lists and calling out some really random things. At one point, I became extremely interested in the idea of electromagnetics. I excused myself from the group for a bit to consult with some engineering/tech friends: Philip Lindsay and Darian Ahler. One of the original team ideas was a bracelet with an attachment to stabilize something. In the case of zipping up a jacket, you would reach over to one side of the jacket and activate an electromagnet to stabilize the jacket, as your unaffected hand managed the zipper and pulled it up. My friends talked me through solenoids and balloon/coffee grounds grippers. As I tried to do some research on the feasibility of something higher tech, the rest of the team continued working on other ideas.

It was a real shuffle to present to the crowd and update them on our progress. It was also a good way to keep us moving forward. It was fun to hear what the other seven teams at the event were working on. There was clearly some amazing minds coming together to come up with beautiful, functional designs to benefit all.

Our design continued to develop that first day. We had the opportunity to consult with Brett Heising of brettapproved.com. He has limited dexterity in his right hand. He told us the most difficult tasks for him were tying a tie and buttoning the top button and sleeves of a dress shirt. I simulated our design theory by using my hand to form a “clip” and stabilize the material of his shirt sleeve held together. He still wasn’t able to button the button.

I asked Brett if he had ever used a button hook, which is a common buttoning aid. He said he had, but challenged us to come up with a better design. We realized that our stabilizer had the potential to develop by adding different attachments based on the individual needs. I continued problem-solving a tool for this specific task, but it is still in development.We Are Able Prototypes

The stabilizing gripper we had designed would facilitate tying a tie though and we began to list all of the activities it would help with. It could help zip up jackets, open ziplock baggies, open other packages, hold a fork for cutting with a knife, hold paper while cutting with scissors, and hold a smartphone for the other hand to easily access.

As our first day came to an end, we felt that the palm of the hand would provide more stability than the wrist and that a low tech attachment would be more feasible. The next day we would bring various materials and clips to problem-solve what would work best. We consulted with representatives from PSC Engineering who were on hand with 3-D printers to print out a modified version of a slide clip pants hanger clip, which is the type of attachment piece we were leaning towards.

As I left the first day, I was exhausted and exhilarated. Now that we had a basic concept, I needed some hands-on inspiration. I needed to touch and feel materials and process. I walked up and down every aisle of a local Wal-Mart letting my brain work through the possibilities. I bought ribbon, chain and leather bracelets, yarn, a crochet hook, metal picnic tablecloth clips, and various other supplies we could possibly use tomorrow to put together a prototype. I knew it wouldn’t be as pretty as I would like, but I knew it might help us make a functioning tool.

Friday morning was crunch time. Patricia set to work on the computer animated design. Jessica worked on the slides for the presentation. With everyone’s “supply” contribution in the middle of the table some of us began playing with materials. We ended up using the tablecloth hooks and reformed them into a universal cuff. We covered the metal in leather and attached a slide-lock hanger clip. We covered the clip in Sugru for aesthetics and for greater stability at the latch.

Winning DesignWe were still making changes it was time to present to the judges, but we were proud of what we made in just a short time. This small tool had the ability to assist people with cerebral palsy, stroke, arthritis and other disabilities be more functional and independent. Our presentation went well, and I really felt that the judges and the people in the room appreciated and valued our hard work and what we had done in such a short time. We were awarded the People’s Choice Award and a Google Chromecast each! Brett talked to us about a friend in Arizona that could help with bringing our design to market.

For me, the Design-athon was an opportunity to collaborate with like-minded people passionate about design and disability. It allowed me to blend my knowledge, creativity, and passion. Designing and making adaptive aides has been one of my life pursuits, and with this experience, I feel confident that I am moving in the right direction.

 

Design-athon Revised Header

 

Thank You to a Congressional Champion

Sen. Tom Harkin (D-IA)

Sen. Tom Harkin (D-IA)

United Cerebral Palsy would like to sincerely thank retiring U.S. Senator Tom Harkin of Iowa for his 40 years of service in Congress. Throughout his career, he demonstrated a deep commitment to and passion for disability policy and the families that policy impacts. We are grateful for everything he did forward an agenda of equality and independence for everyone.

Several other Congressional champions for people with disabilities also will be leaving office this year including Senator Jay Rockefeller (WV); Senator Carl Levin(MI); Rep. Henry Waxman (CA); Rep. George Miller (CA); and Rep. John D. Dingell (MI).

Each contributed to the passage of major legislation which improved the status quo for people with disabilities and their families.  Their legacies include the Americans with Disabilities Act (ADA), Affordable Care Act (ACA), Individuals with Disabilities Education Act (IDEA), and Developmental Disabilities Assistance and Bill of Rights Act, which collectively impact millions of Americans.

This video honoring the retiring Members of Congress was jointly developed by six national organizations – The Arc, American Association on Intellectual and Developmental Disabilities, Association of University Centers on Disabilities, National Association of Councils on Developmental Disabilities, Self-Advocates Becoming Empowered, and United Cerebral Palsy.

 

 

A Tribute to Disability Activist Stella Young

Stella Young

“I use the term porn deliberately because they objectify one group of people for the benefit of another group of people.” – Stella Young on “inspiration porn” images of people with disabilities.

The headlines are heavy today with the news that comedian and journalist Stella Young unexpectedly passed away over the weekend at the age of 32. Many of you may recognize Stella’s face if not her name from the video of her TED talk in April of 2014, which has been widely shared on You Tube and social media and racked up millions of views worldwide.

Stella was born with Osteogensis Imperfecta, a genetic disorder causing bones to break easily. She used a wheelchair, although she’d be quick to point out that this fact does not automatically turn her into a noble inspiration for the rest of humanity.

“Stella’s frank way of making her point, with her razor-sharp wit wrapped in a genuinely warm and inviting smile will be missed in the world of disability advocacy,” said Stephen Bennett, CEO of United Cerebral Palsy. “We all talk about the same issues Stella talked about, but she really knew how to present things in a way in which people had to stop and take notice.”

“Just a few months ago, our national external affairs staff viewed Stella’s TED Talk in preparation for a deeper discussion of how nonprofit organizations portray people with disabilities in our communications, marketing and development materials,” said Ruben Gonzales, Chief Development Officer of UCP. “It was so valuable for our staff members without disabilities to get that perspective.”

In honor of Stella and her work, here’s a link to ABC’s website with a list of “17 Things Stella Wants You to Know as demonstrated in quotes from her work.

 

A New Way of Connecting for People with CP

Frantz Alexis Headshot

Guest post by Frantz Alexis

One of the frustrations I have dealt with because I have cerebral palsy is that it is often difficult to find other people like me, who have CP, to talk to. The growth of the internet, specifically social media, has been very helpful in addressing that issue. Facebook groups, online forums, and the web have been invaluable resources. However, I still struggle with using these resources, as they often associate my posts with who I am and there is not a way to delete a post once I put it out there. I would bet that anyone with a health issue can empathize with the desire to communicate with others anonymously about some of the more private or potentially embarrassing aspects of their condition.

A few months ago I posted a question about my orthotics in a Facebook group for people who have CP. The question wasn’t that embarrassing. However, I didn’t want it exposed to a large audience.  Imagine my surprise a few weeks later when I was having dinner with a family member and she asked if I was able to resolve the issue. Apparently, the post was visible to anyone who was friends with me on Facebook! Needless to say, I was not happy. I wanted a way to ask these types of questions anonymously. After my experience on Facebook I started doing some research and many folks expressed interest in such an app.

Recently, I launched an app which couple of friends and I developed – Candor CP.  The app lets people chat anonymously with others who have CP. Having something like this app would have been like a gift from heaven when I was an adolescent (truthfully, it’s a godsend now). Growing up I had no one to talk with about some of the challenges of being different from everyone in my community. If I was ever frustrated or embarrassed, and it did happen on occasion, I had no one to chat with that could relate to my experience.

A couple of years ago I was researching having yet another surgery to manage the symptoms of my CP. On paper, the procedure looks very scary and fraught with risks,  my doctors and some friends advised me against having it done. The term “crazy” was thrown around quite a bit. While continuing to research the surgery I stumbled upon a Facebook group for people who have had it done.  It would be quite the understatement of the year to say that the people I was able to chat with in that group were instrumental in my decision to go forward with the surgery. Since I tend to be a private person I found that I communicated with members of the group mostly via private message. During these chats I learned quite a bit about the procedure, it’s benefits, and what it felt like coming out on the other side of the surgery. The personal endorsements from my new friends is what helped to confirm that I was making the right decision regarding having the surgery.  It’s a shame that their insights are locked away in my inbox and not publicly so that others can benefit. The surgery changed my life and gave me the ability to do amazing things like complete a Spartan Sprint. This is yet another example of how beneficial communicating with other CPers has been for me and can be for others.

Since launching the app there have been awesome conversations on a variety of topics: dating, surgeries, treatments and even fashion advice! It was also covered in a blog post by a Huffington Post blogger who also has CP.

I am very happy to see that people have found the app to be as helpful as I do!  I wanted to create the app because I learned first hand how powerful sharing experiences can be for people who medical conditions and I knew that there were people who were not sharing because there was no way to do so in an anonymous way. Candor CP is here to fill that gap!

Frantz Alexis
Frantz Alexis is a Product Manager in New York City he can be reached via email at frantzsdr@gmail.com.