Champions of Change Honored at White House

WHChaps 1This week, staff from UCP National, along with several participants in our summer intern program, attended the Champions of Change ceremony at the White House in Washington, D.C. The program, “Disability Advocacy Across Generations” recognized the 25th anniversary of the Americans with Disabilities Act and nine “Champions of Change” selected by the Obama administration. Each champion has been very influential in the disability community and has brought about major changes, while facing obstacles of their own.

Champion Dilshad Ali, a mother of a son with autism, spoke about how disability is something that is hidden and never spoken of in her Muslim community. Ali discussed the importance of being able to access the support of one’s religious or cultural institutions as part of a panel on Effective Disability Advocacy. There was also Dior Vargas, a Latina woman who suffers with depression and anxiety. Vargas emphasized how many times disabilities are ‘invisible’, and therefore go unnoticed. She brought an interesting aspect to the table, and channeled people’s focus on another kind of disability, mental illnesses, which are often left out of the conversation on disability advocacy.

The day’s speakers included Jim Abbott, a former MLB pitcher and Olympian born without a right hand. Abbott has faced physical obstacles his whole life – especially in sports. He spoke about how he had to do things a little bit differently, but that is what got him to where he is today. He showed the audience how he adapted to pitching a baseball with one hand, and told stories about how former teachers and coaches who were open to “doing things differently,” giving him the opportunity to excel.

Another panel on Owning the Future: Disability, Diversity and Leadership included some Champions, who faced more communication barriers than others. Mike Ellis, who is deaf, explained more about his role at AT &T and working to ensure communication technology was accessible to all. Another champion, Catherine Hutchinson, experienced a severe brain injury and is now quadriplegic used a speech synthesizer to communicate.

At the end of the second panel, Derrick Coleman from the SuperBowl champion Seattle Seahawks worked to motivate the crowd to follow their dreams. He lost his hearing at the age of 3 and is the first deaf player in the NFL. Coleman told the audience to be themselves and love themselves.

U.S Secretary of Labor Thomas Perez closed out the event with information about current initiatives to improve upon worker rights, such as raising the federal minimum wage for all workers and echoed some of the panelist’s comments about the importance of participation in the workforce to true inclusion and independence.

Comedians with Disabilities Come Together to Break Down Barriers

Twenty five years ago, before the passage of the landmark Americans with Disabilities Act (ADA), there likely would have been physical barriers in clubs and theaters, challenges at airports and in hotels or other issues that would make it difficult, difficult if not impossible, for Michael Aronin, Shanon DeVido, Tim Grill, and Mike Murray to mount a full-fledged comedy tour.

In 2015, accessibility in public places has improved and with it the attitudes of many toward people with disabilities such as spina bifida, cerebral palsy, hearing impairment and spinal muscular atrophy. However, for many who don’t have a close friend or family member with a disability, there are still misconceptions and a lack of understanding. Employers can still be reluctant to hire people with disabilities, especially in the entertainment industry where there is a perception that audiences won’t respond well.

So, the comedians set out on a mission to bridge the gap with laughter. Wicked wit forged from a lifetime of dealing with adversity, No Comic Left Behind smashes stereotypes with every joke: people with disabilities are really no different from you and I. Set-ups on relationships, jobs, and family come with punch lines about wheelchairs and the underrated benefits of being deaf.

“Comedy is a great way to break down that barrier that people often have when they’re talking with people with disabilities,” said Shannon DeVido.

The comedians have long understood that laughter is the best medicine. Michael Aronin, who nearly died at birth and now has cerebral palsy, uses humor to coach audiences toward their career goals as a motivational speaker. And, Tim Grill was born with spina bifida, going through thirteen surgeries to enable him to walk. Rounded out by experienced performer and wheelchair user Shannon DeVido and Mike Murray, who was deaf until the age of 40 when Cochlear implants brought him into the hearing world, each comic is eager to raise awareness about disability.

Collectively, performing under the banner of No Comic Left Behind, the quartet is determined to follow their mission across the country in clubs, theaters and universities. Their ultimate goal is to expose as broad of an audience as possible through, raising awareness about the inherent abilities of people with disabilities. Once the audience is laughing, it becomes much easier to talk about the serious stuff and make people think about what they can do to better include people with disabilities in everyday life.

“Think about it,” said Tim Grill. “We can win over 100 or more people with each show just by being funny – which is something we do on daily basis anyway. Then those 100 people go back out into the world feeling a lot less uncomfortable around people with disabilities and help spread the love. They’ll be more likely to think about accessibility and inclusion and more likely to have some understanding of the next person with a disability that they meet.”

 

For more information about No Comic Left Behind, check out their website!

You can also watch a short video featuring the comics of No Comic Left Behind on UCP’s Youtube Channel!

UCP Visits the Abilities Expo!

UCP made a trip to Edison, New Jersey for the New York Metro Abilities Expo a couple weeks ago. The Abilities Expo brings together vendors, organizations and disability-centered initiatives for three days for those to explore the latest and greatest in all things disability related. Staff from UCP National visited the Expo on May 2nd and 3rd, networking with several organizations and fellow Expo-goers.

 

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UCP Staff with the crew from the [dis]ABLED InsideOut collaborative.

Some of the highlights from the Expo included: The Panthera X, a carbon-frame chair that weighs only nine pounds with the wheels attached, with the frame itself only weighing four pounds. Other cool and notable technology included Smart Drive, which allows a manual wheelchair user to be able to steer their chair by just tapping on the wheels.

The UCP Staff hadopportunity to be apart of the large-scale and collaborative art project [dis]ABLED InsideOut, which is being lead by French actress and activist Leopoldine Huyghues-Despointes and artist JR. The goal of the project is to help bring awareness to disability, as well as to play a role in helping to challenge stereotypes that those with disabilities often face. The staff members who participated in the project were all born with Cerebral Palsy and were honored to be apart of the [dis]ABLED movement.

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Some of the assistive devices on display at the Expo.

 

The biggest highlight of the Expo was, without a doubt, getting to meet and connect with so many wonderful and like-minded people with disabilities. There was great camaraderie and conversation. It’s an amazing thing to see such a strong amount of activism in one space.

If you have a chance, go check out the Abilities Expo when it comes to your city!

 

 

Disability Policy Seminar Brings Advocates to Capitol Hill

Capitol

 

 

 

 

 

 

Almost 700 disability advocates gathered at The Renaissance Hotel in downtown Washington, D.C.April 13-15 for the annual Disability Policy Seminar. Co-hosted each year by UCP, The Arc, SABE, AAIDD, AUCD and NACDD, this event brings together advocates, policy experts and people with disabilities and their families on Capitol Hill to discuss current policy issues important to people with intellectual and developmental disabilities and to advocate for top priority policies by going directly to their representatives in Congress.

Take a peek at the event courtesy of photos from AUCD at https://www.flickr.com/photos/aucd.

Visit disabilitypolicyseminar.org for more general information about the event and to plan for next year.

 

Replacing Pity with Power: A Former Poster Child Speaks Out

Lorraine C_ChildhoodLorraine 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 lorraine_cannistra and Leahknow 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.”

Share Your Insights on Families, Disabilities and Post-Secondary Success

The U.S. Department of Labor’s Office of Disability Employment is launching their next Connecting Families Online Dialogue starting Monday, January 26 and running through Friday, February 6, 2015. This online dialogue on Families, Disabilities and Post-Secondary Success is for the families of students/young adults with disabilities who are currently or were recently enrolled in a post-secondary education program  (e.g., certificate, apprenticeship, community college, college).

To participate, family members can register here and post their comments beginning Monday morning at 8 a.m. EST. Once registered families will be prompted regarding when subject-specific experts will be providing feedback on the topics of

Don’t miss your chance to join the conversation: The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) wants your input through this “virtual town hall” where you’ll be able to share your ideas and insights on ways that post-secondary institutions and other providers can better assist you in supporting your student’s educational and employment success. Register now and start chiming in on Monday morning!

 

Join Us for an International Day of Acceptance

United Cerebral Palsy and #MyLifeWithoutLimits has proudly pledged our support of 3E Love’s annual International Day of Acceptance. Please consider joining us in the movement for acceptance by wearing your heart on your sleeves and sharing your #DayofAcceptance story this Tuesday! January 20 is dedicated to the social acceptance of disability and to honor the late Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance pictured below. Learn how you can get involved at www.dayofacceptance.com. What does acceptance mean to you? Share your #DayofAcceptance story and photos here. And, use the #DayofAcceptance or #MyLifeWithoutLimits hashtags and tag @UCPNational to share on social media. Here are some stories that have already come in:

UCP-DayOfAcceptance 2015
At UCP, we focus on a single goal: ensuring people with disabilities and their families have the opportunities we all deserve. We want to remove barriers that might stand in the way of seizing those opportunities. And, one of the biggest barriers can be simple acceptance. Most people don’t set out to deny opportunities to the rest of us. It happens because most people are concerned with their own challenges and don’t stop to think of others. People with disabilities deserve to enjoy the same opportunities as their neighbors. We are all valued members of our communities. We all want the same things in life, some of us just have different challenges.” – Stephen Bennett, UCP President & CEO

IDOA_Lauren

 

I imagine a world where people with disabilities are empowered to be fully functioning members of a society where we, people with disabilities, are accepted for who we are and the stigma of difference no longer exists.  A world where people can look past what makes us physically different and see what all we are capable of doing. #DayofAcceptance” – Lauren

ZIDOA Zachach and I met at MDA camp, became friends, and then more. We celebrate acceptance because it allowed us to find each other. We’re looking forward to our wedding in September where we can celebrate our love with our wonderful friends and family who support us! #DayOfAcceptance – Dawn
IDOA Whitley
My name is Whitley Hodges and I was injured in a car crash in 2009. I spent 3 months in the hospital with broken ribs and a crushed spinal cord. I now live with a spinal cord injury and use a wheelchair for daily mobility. My life has changed dramatically since my accident. 
Knowing the life I had before and living the life I live now makes me really appreciate the little things in life. Everyday is worth living, as hard as it may be it is important to accept yourself and others for the people they are. No matter what other human beings look like or despite any type of stigma society, people or the media have placed on people with disabilities, we all have the same need in life to be wanted and accepted. Acceptance is important to me, because I am able and discriminating against others is wrong.” – Whitley

I Don’t Need a Cure

Daman Wandke is an accessibility analyst and disability advocate in the Washington, DC area. 

Daman Wandke

Daman Wandke

My name is Daman Wandke and I work as a User Interface Analyst at SSB BART Group, an information technology (IT) accessibility consulting company.  In this role, I provide consulting to large corporations on how to make their IT accessible.  I am also a national disability advocate, currently serving as a Board Member of PolicyWorks, where we advocate to improve public policy that would increase employment access for people with disabilities.  Previously, I served as the Student Advisory Council Chair of the US Business Leadership Network.  My advocacy efforts focus on accessible information technology and increasing disability employment.  I earned my Master of Business Administration in an accelerated one-year program. My resume includes accessibility work at many federal agencies: NOAA, USDA, NASA and FHFA. Oh…and I happen to have Cerebral Palsy (CP).

Having CP taught me how to accomplish tasks differently.  I use an electric scooter and forearm crutches for mobility.  I lack in the fine motor department, so I need help with some tasks. My speech is moderately affected by CP, so sometimes I have to get creative in verbal communication if people do not know me well. Having a disability has taught me a lot in life that has contributed to my successes.  I am a good problem solver and creative.  What do you do when you can’t use keys? Install a keyless entry lock on your apartment’s door that works with a remote, just like a car. My disability also taught me about management and teamwork. I have been hiring and managing personal care attendants since I entered college.

I recently saw a sweatshirt advertised on Facebook page dedicated to CP awareness that said: “Someone I know needs a cure.” I found that sentiment to be somewhat offensive. I am a successful 25 year old that would not be where I am today without CP. My disability is my “normal.”  Where would I be today without CP? I wouldn’t be consulting with large companies on how they can improve their IT accessibility.I wouldn’t be advocating side-by-side with national leaders for the disability community.  Yes, my body works differently but it’s not broken, nor sick, nor does it need to be cured.

Instead of a cure, let’s advocate for equality. Not only do I not want a cure, I do not want to be “baby talked” because my speech sounds a little different. I do not want to be turned away from an event because the only entrance has stairs. I do not want to have to pick between working full-time and having access to the personal care attendants. Cerebral Palsy doesn’t worsen over one’s lifetime like a disease. Let’s focus on creating a society of equal opportunity for all people with disabilities, including people with Cerebral Palsy, rather than searching for some kind of “cure.”

 

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.

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Sean Gray Performing

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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

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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.