Young, Queer and Crippled: We’ve Got Spirit Too

Andrew Morrison GurzaTo commemorate Spirit Day, the following is a guest post from a noted blogger and disability advocate who is also gay and a person with a disability. Andrew Morrison-Gurza is a Disability Awareness Consultant with an MA of Legal Studies specializing in Persons with Disabilities. Andrew also has the experience of living as a person with a disability. He understands that the concept of disability is one that many individuals are very new to, and they may not feel comfortable to discuss it. Through his work, Andrew aims to give everyone the opportunity and most importantly, the permission to start the conversation by discussing his day to day lived experience and making disability accessible to everyone. About the terminology he uses in his post, he notes “Cripple is a term that I have reclaimed as one of empowerment. It is not the politically correct terminology for Persons with Disabilities, but it is how I self-identify.”

 

By Andrew Morrison Gurza

I was sitting in my 11th grade math class, and there he was: an absolutely stunning spectacle of man (or, at least what my 16 year old brain considered to be “man” at the time).   Everything inside me told me to go talk with him, my palms were sweaty, his smile made me melt to the floor—it was now or never.  I had just come out of the closet, and based on all the TV and movies I had seen, now that I had admitted my sexuality, my quest for a long term partner would be that much easier.

As I pushed the joystick on my 300-lbs. wheelchair towards him, I began to realize that it wouldn’t be that easy, and all of these thoughts about how I was ‘too disabled’ began to flood my brain. I never did tell my high school crush how I felt about him, but the feelings of uncertainty and fear with respect to my disability lingered. The more and more I got messaging from the media reminding me that “it was okay to be gay,” I would also wonder in the back of my mind, “yes. But is it okay to be gay and disabled?”

Spirit Day is a brilliant initiative designed to combat bullying and homophobia against LGBTQ+ youth. With this in place, Queer youth are told that they matter, and that they have a voice in our ever changing queer-scape. I think that Spirit Day also allows for us to remember the queer voices that we don’t often hear about. For me, that is the queer cripple.

It is important to remember that they exist too, but they may be navigating their queerness in entirely different ways: with Personal Care Assistants who help them with everyday activities many people take for granted, struggling with feeling different amongst the different, and having very few role models who embrace both their disability and their sexuality openly.

Imagine feeling burdensome to everyone because everywhere you look, you are not at all represented. Imagine worrying that you might not get your basic needs met if you come out, and imagine worrying that you might never be loved – all because you sit rather than stand.

It is in our youth where changes in the LGBTQ+ experience will truly come, and so it is our young LGBTQ+ community who must be introduced to the Queer Cripple. We must teach them that it is okay to have questions about disability, and it is okay to be a little bit scared of what they don’t understand.  We must show them now, that all bodies have value, so that by the time they start accessing their sexuality in real-time, the good looking guy in a wheelchair will be someone they will approach as they would anyone else – perhaps with questions and queries, but without fear and fakery.

Spirit Day can also ensure that we celebrate disability in the Queer community. By actively discussing disability (and all that comes with it) on Spirit Day, we can show young Queers with Disabilities that there is indeed a place for them, and they will be a part of this bright rainbow that we all are trying to shine under.

Thank you for reading! If you want to find out more about the work I do as a Disability Awareness Consultant, or find out how I can “make disability accessible” to you through blogging, presenting or speaking, please head over to www.andrewmorrisongurza.com

 

 

Leader in Universal Design Field to Kick Off Design-athon

Design-athon Revised Header
John Salmen, AIA, CAE, is scheduled to kick off the UCP’s Life Labs initiative Enabled by Design-athon: DC Edition on Wednesday, November 5. The president of Universal Designers & Consultants, Inc. and internationally recognized leader in the universal design field, Mr. Salmen has specialized in barrier free design for more than 35 years, creating environments to be usable by people of all ages and abilities, to the greatest extent possible. He is one of the leading experts in the technical aspects of the Americans with Disabilities Act (ADA) and has authored several books including: Accessible ArchitectureThe Do-Able Renewable Home,Accommodating All Guests and Everyone’s Welcome.

He joins Adrienne Biddings, Policy Counsel for Google. Brett Heising of www.brettapproved.com and Maria Town, the influential blogger who created http://cpshoes.tumblr.com/. Also on tap is the 2013 DoSomething Grant winner, Diego Marsical. The speakers will offer “lightning” talks on accessibility and design for people with disabilities at the Great Hall at the Martin Luther King Memorial Library from 6:00-8:00 p.m., which will be followed by networking time at a happy hour at a local establishment to be determined. This event is the prelude to a two-day design workshop at Google’s D.C. offices on November 6-7 where teams will compete to come up with the best design. A $25 registration fee is required for the workshop, however, the Wednesday evening event is FREE and you do not have to participate in the full workshop to attend (registration is required and space is limited).

“This is an opportunity for designers, technologists, engineers, students, caregivers and people with disabilities to collaborate and learn from each other how to use human-centered universal design concepts to solve every day challenges,” said Marc Irlandez, Director of Information, Technology and Life Labs at UCP. “We believe good design goes a long way towards helping people live as independently as possible by making day-to-day tasks just a little easier.”

The event is sponsored by Google, CareerBuilder, Sprint Relay, PCS Engineering, Sugru, the CEA Foundation, Tech Shop and Coroflot. Academic partners include Marymount University and the Cocoran School of the Arts & Design at George Washington, University. It has been featured on the Core77 Design blog and in the Tech Shop newsletter.

Get more information and register at http://ucpdesignathon.org/.

Who Cares About Ken Jennings? A Teachable Moment

Yesterday, former Jeopardy champion and aspiring TV host, Ken Jennings made a highly offensive comment on Twitter. Many of his 177,000+ followers reacted with harsh criticism and several media outlets soon picked up on the storm, reporting on his comment and the ensuing furor online.Ken Jennings Screenshot

So who really cares about Ken Jennings or what he said. He is, after all, a self-described “fixture of yesteryear.” We could jump on the bandwagon and bash Ken for being none-too-bright when it comes to sharing your private thoughts on such a public forum, especially if you’re trying to build a fan base to launch another 15 minutes of fame. We could point out all that is wrong with this statement, but that’s hardly necessary. Those 41 characters pretty much say everything you need to know (as does the fact that almost 23 hours hence, after plenty of criticism, he has not attempted to remove the post.)

But for organizations like UCP, which have spent the better part of 65 years advocating to give people with disabilities the opportunities they need to fully participate in their communities and in our society, this is a teachable moment.

The lesson here is that for all of our progress – greater accessibility to public places, innovations in technology to make day-to-day life easier, reducing discrimination in education, housing and the workplace, more and better public services and support – we really haven’t accomplished much if people with disabilities are still regarded as “less than” people without disabilities.

It is that attitude that is so evident in Mr. Jenning’s post. He’s telling the world that using a wheelchair somehow diminishes what he would consider an otherwise attractive person.

That is sad. But it’s not sad for us. It’s only sad for Mr. Jennings and others like him who have not yet understood that disability doesn’t mean diminished. If we can use this unfortunate moment to make people stop and think for a moment – and possibly check their own attitudes – then we have a truly teachable moment. Maybe Mr. Jennings has given us a gift and offered us some knowledge about the prejudices that still lurk under the surface.

I’ll take “Enlightenment” for $1000, Alex.

New Event Series for Young People with Disabilities and Young Veterans

United Cerebral Palsy (UCP) and Student Veterans of America (SVA) announce a unique partnership that will allow both young adults with disabilities and young veterans to network and increase engagement and collaboration. The project was developed with the support of the National Youth Transitions Center and the Youth Transitions Collaborative (www.thenytc.org).SVA Circle JPEG

An educational series of events called “Engage: A Diverse Event Series” will take place between September and December 2014, covering finance, adaptive sports, disability and military history and wrapping up with a social evening of networking. The events will be open to youth and young adults with disabilities from ages 14-26 and veterans under the age of 35 in the Washington, D.C. metro area. Each event will have a specific subject of focus, addressing key social and educational components and offer a welcoming atmosphere.

The events are free but space is limited for each event, so registration is required. The hope is that by bringing together people from different backgrounds, they will be able to better learn from one another about their individual and shared experiences. Overall, the event series is designed to be a basis for further collaboration within the D.C. area, and serve as venue to further spread best practices.

EVENT DETAILSAdaptive Sports

Wednesday, September 24 from 6:00-8:00 p.m.

National Youth Transition Center at 2013 H Street NW in Washington, D.C.

Financial Education
Network and share your challenges with optimizing financial resources with financial planning experts including representatives from TD Bank, who will offer advice and guidance through interactive budgeting activities. Food and drinks will be provided!


Tuesday, October 21 from 6:00-8:00 p.m.

National Youth Transition Center at 2013 H Street NW in Washington, D.C.

Adaptive Sports
Continue to network while learning about adaptive sports with representatives from Disabled Sports USA who will share their stories, answer questions and demonstrate equipment. Food and drinks are provided!


Wednesday, November 18 from 1:00-3:00 p.m. 

American History Museum at 14th & Constitution Avenue, NW.

Disability and Military History
Hear from the curatorial staff of the Division of Armed Forces History and the Division of Science and medicine at the Smithsonian Institution Accessibility Program followed by behind-the-scenes tours of collections of armed forces and disability history. Snacks and drinks will be provided. And, of course, enjoy networking!


Wednesday, December 10 from 6:00 – 8:00 p.m.

National Youth Transition Center at 2013 H Street NW in Washington, D.C.

Networking Reception
Enjoy an evening filled with networking, food, beverages and music, as we wrap up our event series.

 

REGISTER BY CLICKING HERE!

 

Please contact O’Ryan Case, UCP’s Director of Membership and Public Education at (202) 973-7125 or ocase@ucp.org if you have any questions.

Remembering a Great Camper, Volunteer, Staff Member and Brother

Guest post by Bill McCool, Executive Director of UCP of Delaware

 

Petey & Mary 2

Peter Collins was a camper, volunteer and staff member for United Cerebral Palsy of Delaware’s Camp Manito.  Mary Arden Collins, who is a singer/songwriter in Los Angeles, recently produced a video about her wonderful brother Pete, who passed away in May of this year.  The video tells a great story about Pete, who found ways, both big and small, to give back to the camp and the people he loved.   

Pete started at Camp Manito when he was three years old.  His mother put him on the bus that came to pick him up at their house, but she secretly followed the bus to make sure that he was going to be ok.  It must have worked out, because for the next 35 years, Pete came to camp every summer.

Mary Arden also has her own camp memories.  As a teenager, she became one of the camp volunteers and eventually a counselor.  Mary Arden pursued a music career, but she has always been proud of her association with UCP’s Camp Manito.  When she would come back to Delaware, she would come to the camp and perform for the kids.  She and Pete, who played a bodhran drum, performed together.

Pete & Mary edit.jpg

There has always been a sense of family at UCP’s Camp Manito, probably because we have watched so many children grow up here.  As small children, they are campers; as teens, they become volunteers; as high school and college students, they become staff; as adults, they move into the community and they find ways to give back to the program and to the kids who are following after them.  And while the progression is not the same for everyone, there is a feeling of belonging and sharing that envelops all of the staff, volunteers and campers.

When Peter was too old to attend as a camper, he became one of the camp staff and then a volunteer.  His annual position here was camp receptionist.  He answered the phone, directed callers to UCP staff and took messages.  In the morning, he greeted campers and their parents when they arrived; in the afternoons, he used our public address system to call campers to the lobby when their parents came to pick them up.  He chased down staff to give them their messages.  During the off season he stayed in touch with his camp friends, calling them and talking about good times at camp, telling them he was anxious for summer’s return. He was here every June; he always came back to take care of the phones and do his job.  He was good at what he did, and he was reliable; we always knew we could count on him.

Like any charitable organization, UCP has had its up and down periods, and during one down period, UCP had to cut back the number of weeks the camp could be open from six to four weeks.  Pete made a decision that changed the course of that summer for all of the children who were here.  He donated enough money to help UCP stay open for an additional week of camp.  His love for the camp, our campers, and the work he was doing meant a great deal to Peter.  He gave his donation happily, and he was here that week doing his job as usual.  His donation meant others could enjoy what he had always enjoyed – a longer summer together with the friends they loved.

Pull together any group of adults who attended camp when they were younger and the stories you will hear will amaze you.  It’s the power of camp; it’s the power of their shared experience.  They have an appreciation for the program and a love for the people they grew up with.  Peter was that person too.  He showed his deep feelings for our children and the camp that particular summer and every summer he was here.  We lost Peter this year, but he will never be forgotten by the folks who all shared the same love he had for Camp Manito.

Please take a few moments to watch and hear the video put together by Mary Arden.  The song was written by Mary Arden and Pete was her inspiration.

Bill McCool

 In Memory of Peter Collins, by Mary Arden

 

Navigating the Worlds of Education and Employment with a Disability

Special guest blog post by Maureen Marshall, Electrical Engineer

 

Maureen Marshall 3

Having cerebral palsy (CP) definitely has its challenges and there is no denying that, but there are also so many possibilities for achievement in both education and where that education leads you down your career path.  I was diagnosed with CP at the age of 2 and, though my parents were told I may never attend regular classes in school or actually ever learn to read and write, I proved everyone wrong and successfully attended regular classes– even advanced classes because I pushed myself to prove everyone wrong and excel.  I graduated, not once but 3 times: I graduated from high school; I have a Bachelors of Science degree in Electrical Engineering, a Master of Business Administration degree in Technology; and a Certificate in Strategy and Innovation from the Massachusetts Institute of Technology (MIT).

 

Believe it or not, the biggest challenge I had in school was with the teachers.  While I was in elementary and middle school, I was forced out of orchestra class because I did not hold the bow correctly and I failed typing because I did not type with both hands.  In both cases, neither teacher was willing to recognize that I physically could not do what they wanted me to do, nor even the fact that I was able to succeed through modifying the way I performed the task.  Not having full use of my right side, I held the bow with a firm grip; no pinky finger up and I typed with one hand; not both. 

As I moved through high school and college, I learned to not register for classes that would be a physical challenge for me and cause further pass/fail issues, such as gym and swimming classes.  It was not worth the fight with the school administrators to get them to accept my limitations.  Instead, I enjoyed sports with my friends, who accepted these limitations and took swimming classes on my own where there was no pass/fail criterion.  When it came to choosing a field of study in college, I recognized that I would need a career that focused on my strengths and one that I could advance in.  I always loved and did well in math and science courses, so engineering was the path I chose to take– which I have had great success. Engineering allows me to use my knowledge and experiences, with little or no physical activity. There are so many different engineering positions and fields to chose from– one can definitely find one that fits not only their strengths but their abilities.  I have also found that industry is very accommodating to those with disabilities and will make every effort to ensure all obstacles are removed.  For instance, if you chose to work in a manufacturing plant, where getting around can be difficult, they have been known to install elevators or even mark walkways to allow wheelchair accessibility.

Maureen Marshall 2

I’ve experienced some interesting moments from the time I graduated to now– and one I’ll never forget is my first interview!  During the middle of the interview, I had to leave the room to get a form at the request of the person interviewing me and, when I came back to the room, I landed flat on my face.  For some reason, from the time I left the room to re-entering it, someone had placed a 2×4 board across the bottom of the doorway, which I tripped over when walking back into the room.  Mortified and embarrassed, I decided to get up as quickly as possible, gain my composure, laugh (instead of cry) and simply comment, “Well, that wasn’t there before!” and move on with the interview like nothing happened.  To this day, I will never know if that was an interview tactic or a simple mistake of someone working in the office area.  However, I am happy to say I got the job and I think a lot of that had to do with how I handled that situation! 

I have never called out my disability to any potential employers or future colleagues and over the years very few have inquired, even though it is very noticeable.  What worked for me, is taking on every situation, like there is nothing limiting me, and simply ‘adjust’ as needed.  An obstacle I have to overcome on a daily basis is when I am with a group heading either to a meeting or out to lunch and they head for stairs.  I will simply let them know to meet me by the elevator or ask where I could meet them after I find the elevator.  I have to say I have been very blessed with employers and colleagues that have never called out my disability either.  Do not get me wrong, there have also been a few challenging moments throughout the years too.  

Several years back, there was an incident where I was out of the country for a business trip. While at dinner with a group of colleagues, one of them decided to call me “Crip” (a term short for cripple).  I was shocked when I heard this reference and especially from a superior.  At first, I ignored what I heard, hoping I was mistaken.  However after he repeated it several times, I quickly stated in return, “I am sorry.  Are you talking to me?  Because if you are, I do not answer to that, nor does my disability change who I am and why we are here.”  Unfortunately for him, he continued to refer to me as “Crip,” even after my request throughout the dinner.  All I could do was continue to ignore him.  I was very surprised that the others around the table never participated nor tried to stop him right then and there.  However, once we landed back home and returned to work, he was fired on the spot because they had addressed their concerns with our Human Resources Department without me knowing– taking quick care of the issue. 

I have also had bosses that have treated me differently than others, not because of my performance, but because they were not comfortable with my disability.  In cases like this, I have learned it’s best to move on and get out from under them as quickly as possible– take actions in my own hands and find a new position.

Maureen Marshall 1

In today’s day and time, if one is treating someone differently– not promoting them, holding them back from situations or otherwise– it’s their problem and not yours! 

In the end, I am very proud to state that I am witness to the fact that the professional environment for persons with disabilities has improved over the last 20 years.  More and more buildings are accessible and employers are welcoming the diversity in the workplace.  Unfortunately, there will always be those that still need to be educated on acceptance of persons with disabilities.  The good news is that we are the change agents and it is up to us to teach them that those with disabilities are very capable of being high performers.

If I were to offer advice to students with disabilities who are interested in careers in engineering and technology, it would be– do not let anyone or anything stop you! 

 

Marshall is from Royal Oak, Michigan and has been married for nearly twenty years. She has three sons and has held a career as an Electrical Engineer in the automotive and defense markets for more than twenty years.

Social Security Disability Benefits: Can I Apply?

by Lisa Giorgetti, Community Liaison, Social Security Disability Help

 

LisaProfile

Everyone is encouraged to live life without limitations, no matter who you are and what you face on a day-to-day basis. Just as many people encounter daily obstacles, the disability community has additional challenges to face, from going to physical therapy to paying dreaded medical bills. Health and other costs of living can certainly add up and put strain on your wallet. Social Security Disability benefits can help your family obtain some desired financial relief. Knowing all the facts and information about disability benefits helps better prepare you for the application process in order to file a successful claim.

 

 

Preparing for the Disability Application Process 

There are a number of steps to take in preparation for the application process. These steps will help ensure the success of your Social Security Disability claim.

 

Disability Benefits Programs

The first thing to consider when applying is to decide which program you’re eligible for, either Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI).

If you’ve been a member of the workforce and suddenly find yourself unable to complete any sort of work activity and receive income, you could qualify for SSDI. You need to have paid the correct amount of Social Security taxes, depending on your age, when you were working. http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi 

But what if you haven’t had the chance to obtain enough work credits or if the SSDI payments aren’t enough? Then SSI could be your answer as it’s a need-based program. You will just need to prove that your assets and household income are below the Social Security Administration’s (SSA) threshold. Also, if you have a child living with a disability and you meet the asset and income limit, you would want to apply for SSI through the parental deeming process. http://www.disability-benefits-help.org/ssi/qualify-for-ssi

 

Determining Disability Under SSA Guidelines

No matter what disability benefits program you apply for, whether SSDI or SSI, you need to be classified as a “disabled” individual by the SSA. This means that your condition needs to be long-term, at least 12 months, or permanent that absolutely prevents you from performing any sort of work activity whatsoever.

The SSA also has published a “Blue Book” of medical listings with detailed criteria required to qualify for disability benefits as a result of a disabling condition. If your disability is listed in the Blue Book, you will just need to prove that you meet the requirements set forth. If, on the off chance, your condition isn’t listed, don’t worry. You will just have to prove that your condition meets the criteria of one of the listings or that it results in absolute inability to work. http://www.disability-benefits-help.org/disabling-conditions

For example, cerebral palsy is found in the Blue Book in Section 11.07 under neurological disorders. Since cerebral palsy is a long-term condition, your chances of receiving benefits can be likely. This is because cerebral palsy is considered by the SSA to be a “presumptive disability”. As a result, you may be able to: 

  • Start receiving payments, while the SSA reviews your application;
  • Receive these payments for up to six months during the application process; and
  • If SSA then denies your claim, you do not have to pay back the money sent to you.


Getting Together the Paperwork You Will Need
           

When getting ready to apply for benefits, you will need to show SSA proof of:

  • United States citizenship or legal residency in the US
  • Age
  • Living Arrangements
  • Medical Records
  • Income and Assets
  • Work History

Make sure to provide originals with your application, and keep copies to yourself (the only copies the SSA will accept are certified copies from the entity that issued them).

 

Meeting Eligibility Requirements 

As previously stated, each medical condition listed in the Blue Book has eligibility criteria that need to be met in order to be considered disabled. If you’re able to meet the requirements, you will need to prove to the SSA with proper documentation, such as doctor’s notes or observations from a therapist. 

In the example of applying with cerebral palsy, as an adult or child, the specific requirements vary:

For a child to be eligible to receive benefits due to cerebral palsy, the SSA will compare the child’s motor skills and abilities to those of children within the same age group. For example, if the cerebral palsy interferes with the ability to:

  • Take care of personal hygiene
  • Feed himself or herself
  • Participate in activities for children within his or her age group without assistance
  • Problems with one of the above, coupled with seizures, a low IQ for his/her age, and/or speech, hearing, or vision impairments
  • Using his or her hands, arms, and/or legs

For an adult applying for SSI or SSDI benefits due to cerebral palsy, they must keep in mind that in order to qualify for benefits, the disability has to affect the applicant’s activities of daily living. These activities include:

  • Walking
  • Standing
  • Seeing
  • Hearing
  • Speaking
  • Writing
  • Household chores

If your cerebral palsy interferes with these activities, then you have a higher chance of being approved for disability benefits.

 

The Application Process

There are many SSA field offices located throughout the country; so it should be easy to find a location that is close to you. However, you may apply either:

  • In person
  • By mail
  • By filling out an application online

 If you decide to apply in person, it would be better to call in advance to schedule an appointment, since sometimes the field offices are crowded and you may have to wait in line.

 

What Happens if Your Initial Claim is Denied?

If your claim is denied, no need to panic. There’s still a possibility to be approved for benefits. In fact, most people are denied when they first apply for benefits. No matter how tempting it may be, don’t simply apply again. Instead, use the appeal process. The denial letter will include the information about how to file an appeal. Make sure you appeal within the 60-day period provided for doing so. It’s also helpful to know that:

  • Some jurisdictions require a reconsideration process before you can get a hearing; while others will allow you to schedule a hearing without the reconsideration step.
  • The person who will be in charge of your hearing will be an Administrative Law Judge (ALJ)
  • The ALJ was not involved in your initial application process
  • Sometimes, a videoconference hearing will be allowed. If this is the case, the SSA will notify you beforehand.
  • The ALJ will ask you questions about your disability
  • A vocational expert may also be present and ask additional questions

  

What Can You Expect in Terms of Benefits? 

Once you’re approved for Social Security Disability benefits, you can expect to receive additional payments (beyond the initial presumptive disability payments):

  • Between four to six weeks from when you receive your notification of approval
  • On the first day of every month
  • SSDI benefits are based on the applicant’s work record and earnings while working
  • SSI benefits are independent on the applicant’s work record; so even if you have never worked, you can still be eligible to receive SSI benefits.

 

Should You Hire an Attorney? 

Disability lawyers and representatives can assist you throughout the entire process of applying for SSI or SSDI benefits. When initially applying for benefits, getting all of the paperwork together can be done by you or a loved one; so if you are comfortable getting that part of the process done without legal assistance, then you can do so.

However, if your benefits are denied and you have to go to a hearing, it would be best to appear with an attorney, since they will know which questions to ask you to better show the judge that you are entitled to benefits. 

You don’t need to worry about having to come up with the money to pay your Social Security Disability lawyer. Their fee is a percentage of the benefits awarded to you in the form of back pay. Also, you don’t have to worry that your funds will run out in order to pay for your lawyer, since, by law, they can only take up to 25% (up to a maximum of $6,000) of any past due benefits owed to you. 

Although the process can appear to be daunting, every year, thousands of people are able to get their benefits successfully. If you or your loved one lives with a disability, you have the option to apply for SSI or SSDI benefits. These are benefits you may be entitled to by law, and they can significantly alleviate any financial stress you may be experiencing. 

 

Lisa Giorgetti is from Boston, MA and is the Community Liaison for Social Security Disability Help where she works to advocate for disability awareness and assist people throughout the Social Security Disability application process. For more information about Social Security Disability assistance, visit http://disability-benefits-help.org or contact via email help@disability-benefits-help.org.

The Tottering See-Saw of “Empathy Exercises”

by D’Arcee Neal, UCP’s Manager of Institutional Giving

D'Arcee Neal

D’Arcee Neal

Being a person who is disabled and who works as a disability advocate is like being on a see-saw. I am tempted at times –influenced by society and my own experiences – to move into rage mode, because so much of what I see day in and day out doesn’t mesh with what I know is right. But then I tilt toward the other side which is a “woe is me” mode of pity, sympathy and understanding because I know that I can better get my point across by interacting with people in a gentle, respectful way. In reality, I think that effective advocates balance on the see-saw’s fulcrum, right in the middle. You can teach without being combative, but shoving the rage down inside of you and ignoring what’s wrong with a pair of rose-colored contacts in your eyes helps no one.

 So, when I saw a video this week of CNN’s Anderson Cooper as he tried an empathy exercise for people who have schizophrenia, I moved back and forth on the emotional see-saw as I tried to make sense of what I was seeing. I came across the clip after seeing comments on it from people in an online Cerebral Palsy group I belong to. They were posting angry comments about the purpose of empathy exercises and their effectiveness with the general public. I wondered for a moment: do empathy exercises really do ANYTHING?

Most of us (especially people with disabilities) already know that nothing accurately replicates another individual’s struggles. This is partially why struggles are so difficult, whether it be issues of race, disability, sexuality or any of the myriad possibilities in the human race. However, this isn’t to say that we should just shrug our shoulders. If the only people willing to learn about disabilities were doctors, then the world would be a much different place, and society might see medical professionals as little more than morbidly curious paparazzi with scalpels instead of cameras.

Thankfully, the world isn’t like that and we have people from all walks of life dedicated to learning about, dealing with, and understanding people with disabilities. But for those who haven’t crossed that threshold of understanding, then empathy exercises are one of the best ways to offer them the tiniest glimpse into another person’s world. 

In college, I had a friend who decided to live in a wheelchair for 48 hours as part of a sociology project. In my mind, I laughed because I knew there was a slim chance that he would actually do it, but I played along. Just rolling about 2 or 3 blocks to the cafeteria for dinner together, he was out of breath from the effort. He exclaimed that he needed to “pause” the experiment because he had to use the bathroom really badly. My facial expression said it all. And I think he began to understand what many see as the fundamental flaw of the empathy exercise: they end. My Cerebral Palsy is a constant, all-day, all-consuming affair, much like any permanent disability and I understand why some people are angry about the idea that it is possible to simulate it. The exercise cheapens and reduces the experience, in their opinion.

I think that if the experience is framed in the right way, it could be such that people would never forget it. Even if the experience isn’t particularly powerful, the understanding is there at least for the moment, so that people might think about it in the future, and that’s a good thing. Honestly, that’s what I think empathy exercises are about – not about changing someone’s perspective in a mind-blowing way, but introducing small changes which allows leads them to momentary understanding which might come back. 

Empathy exercises may not be the societal game changer many people want it to be, but you have to start somewhere.

UCP RESPONDS TO LONG TERM SERVICES AND SUPPORTS COMMISSION REPORT

FOR IMMEDIATE RELEASE

CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org

UCP RESPONDS TO LONG TERM SERVICES AND SUPPORTS COMMISSION REPORT

Washington, DC (September 19, 2013) – United Cerebral Palsy (UCP) released the following statement in response to the Commission on Long-Term Care’s Final Report to Congress. 

There are currently an estimated 12 million Americans in need of long-term services and supports, and that number is expected to grow dramatically in the coming years. To address this growing need, the Community Living Assistance Services and Supports (CLASS) program was created— but unfortunately, it was repealed as part of the American Taxpayer Relief Act of 2012.

In its stead, the Commission was established to address the issues surrounding long-term care, specifically service delivery, the workforce requirements and financing, and required to produce a report within six months. The Final Report detailing their suggestions was approved by a vote of 9 to 6 on September 12, 2013. However, five of the commissioners who voted “no” released alternate recommendations that suggest financing long-term care through a social insurance program.  

“While we commend the Commission for finishing its work, no easy feat given the short amount of time available and magnitude of the challenges surrounding long-term care, we are disappointed that the Final Report does not address the most critical issue: financing. Any realistic, comprehensive solution to our country’s long-term care issues must address how it will be paid for—and this report fails to do so,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “However, we must also recognize the recommendations made by the five commissioners who voted against the Final Report. Their proposal, to create a public insurance program that would supplement existing private insurance and family caregiver options, is a feasible starting point to addressing the long-term care crisis our country is facing and should be taken seriously. Overall, the actions of the Commission should serve as a stark reminder of how complex the challenges surrounding long-term are, and how urgent the need is to take action.”

# # #

About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.

WORLD CP CHALLENGE ANNOUNCES TEAM LONG BROTHERS AS 2013 AMBASSADORS

FOR IMMEDIATE RELEASE

CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org

WORLD CP CHALLENGE ANNOUNCES TEAM LONG BROTHERS AS 2013 AMBASSADORS 

Connor and Cayden, who has CP, compete as a team in triathlons 

Washington, DC (August 30, 2013) – United Cerebral Palsy (UCP) is thrilled to announce that the Team Long Brothers, Connor and Cayden Long, will serve as the 2013 World Cerebral Palsy (CP) Challenge Ambassadors.

Connor, 10, and Cayden, 7, compete in triathlons and were named the 2012 Sports Illustrated SportsKids of the year— but they are more than just an active pair of brothers. Cayden has spastic cerebral palsy, and cannot walk or speak. Connor pushes Cayden in a stroller, pulls him in a raft and tows him behind his bicycle in each race. And along the way, this amazing duo has shown that anything is possible with the love and support of their friends and family. 14 triathlons later, Team Long Brothers has truly embodied their motto to “Keeping Rolling!”

Team Long Brothers’ next competition is the World CP Challenge, four-week event to raise awareness and support for people with cerebral palsy and other disabilities. Beginning on September 4, teams from around the world will challenge themselves to take 10,000 steps a day— and nearly any activity, including biking, physical therapy and yoga, can be converted into steps on the World CP Challenge website. Last year, nearly 7,000 people worldwide participated in the challenge and raised an incredible $774,399. Team Long Brothers is committed to helping make this year an even bigger success!

“Our family is so honored to see the boys as the ambassadors for the Challenge, we hope that other families will see the importance of being active and healthy as much as we do, and the great thing about this challenge is anyone can take part and it will help families and individuals living with the everyday challenges of Cerebral palsy,” said the Long family. “So always remember to Keep Rolling!!”

“We are thrilled to have Team Long Brothers as ambassadors for the World CP Challenge. Their story shows that, with the support they need, anything is possible for people with disabilities,” said Stephen Bennett, President and CEO of UCP. “Connor and Cayden are an inspiration, and we look forward to watching their progress throughout the month—and hope we can keep up!”

For more information about the Long Brothers and their story, please visit their website,www.teamlongbrothers.org.

# # # 

About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.