Equality is Never Trivial or a Waste

This week, the Senate debates the U.N. Treaty, The Convention on the Rights of Persons with Disabilities (CRPD). It's not only a proclamation that people with disabilities across the globe deserve equality, but is also a vehicle to hopefully ensure that other Countries give equal rights to people with disabilities. It was modeled after the U.S.'s own Americans With Disabilities Act (ADA), an international model for disability rights.

A small minority of Senators are holding back U.S. ratification, claiming that it would take away U.S. sovereignty and parents rights in America. But most experts agree it wouldn't affect U.S. sovereignty and the vast majority of disability advocates champion it, here and internationally.

In fact, over 100 other countries have already ratified it.  CRPD doesn't require anything of the U.S. above and beyond what the ADA already does. Former White House Counsel C. Boyden Gray and former Attorney General Dick Thornburgh, a parent of a child with a disability, have confirmed that no changes in U.S. law will be required to comply with the treaty.

So why is it so important that we ratify it? Ratification will allow the U.S. to "contribute formally its leadership and expertise on disability issues to rest of the world.” It is a powerful symbol that the U.S. values equality and human rights.

As I type this, the Senate will vote on CRPD. Many people have mentioned that while the "fiscal cliff" of sequestration looms, this is a waste of valuable legislative time. I would argue that equality is never a waste of time or resources. This, in fact, is why I believe the United States is the greatest country in the world. What if in the late 80s and early 90s, we said, "the ADA isn't as important as the national debt, let's put it aside for now." And the Civil Rights movement? Women's Suffrage?

I hope that the Senate does the right thing and votes to ratify international disability rights so that they can move on to other (but not more) important pressing matters.

Keith Hosey
Associate Director
Center for Accessible Living

Update: CRPD did not get the 2/3 votes in the Senate to be ratified by the United States of America.

Know No Excuses

- By Guest Blogger Pinalben “Pinky” Patel -

I believe everyone should have a college education especially people using a wheelchair. Many people cannot go to college because of various responsibilities such as having to take care of a sick loved one or sports training, but having a physical disability is not a valid excuse.

However, there are different stages of disability. Some people in wheelchairs can drive, cook, clean, stand up or even walk a few steps by holding onto the wall. Whereas, some wheelchair users have very limited use of their arms and cannot stand or turn in bed without another person's help.

Hence, wheelchair users have to choose their study in college according to their capabilities. It certainly does not mean that the choices are limited. It just means that people using a wheelchair have to be realistic when it comes to choosing study areas.

For instance, I am a wheelchair user due to Friedreich's Ataxia. My FA has also made my upper body so uncoordinated that I cannot write with a pencil. Therefore, I don't think I can study surgery and become a surgeon even if I wanted to become one. I chose an area, which I could study as independently as possible.

Since my junior year in high school, I enjoyed writing. I wanted to study creative writing in college. I do not type as slow as I write with a pen but much slower than average. So vocational rehabilitation bought a voice-activated software called Dragon NaturallySpeaking for me to type my assignments faster. I enrolled in West Kentucky Community and Technical College because it was in town where I can use the local taxi. It offered an associate degree in English with many literature and creative writing classes.

When I finished the associate degree, I wanted to do a bachelor's degree. I went to Murray State University to do that because it was closest to my home. But it was still about an hour away from my home. I took journalism classes at that college because they were less demanding in attendance than creative writing. However, transportation and attendant care was still becoming an issue. Even though the University provided note takers and scribes for tests in classes, I had a difficult time finding reliable people to work with as I need help in the rest room and driving.

To resolve the frustrating problem, I changed my major and degree program to one that would let me take most classes online. I had Internet access and VR helped me get a computer so I was able to stay home while finishing my degree. I finally graduated with a bachelor's of independent studies in Print Communications.
People with disabilities should not worry about college expenses either – they are more than bearable. My college fees were paid by FAFSA and VR. Because I also had a KEES scholarship, I received a few leftover bucks from the financial aid office. When I had the hour commute, VR even paid for gas mileage and outfitted the family van with a wheelchair lift. I did spend a little money to take summer classes because I wanted to finish my degree faster, but that is not a requirement.

Although the cost of a college education does depend on the chosen school, a will to study would make any school a great choice. I did not want to study at any of the schools I had gone to, but in my situation those schools were the best for me. I wanted to focus on studying, not training personal-care attendants to handle my needs. Besides, I had lots of trouble finding daytime aides so I can only imagine the tediousness of my living in a dorm. After taking some classes, I found that there is no difference between an IV league and a public or community college. Education is education, no matter where it is from.

Education is really important to me because I was not expected to study beyond high school. People still awe at me when they find out I am a college graduate and strangely, that is a nice feeling. I want everyone in my situation to feel that sense of accomplishment.

The Center for Accessible Living, Inc. is currently seeking interested Individuals to apply for membership on the Board of Directors

The Center for Accessible Living, Inc. is currently seeking interested Individuals to apply for membership on the Board of Directors.

The Center for Accessible Living is Kentucky’s first Independent Living Center and is a private, non-profit 501(c)(3) organization. CAL is a disability rights and resource center for people with disabilities, governed by people with disabilities. Services are offered to individuals with all types of disabilities. The Board of Directors, which establishes policy and direction for the Center, is composed of members from the local community, the majority (at least 51%) of which are people with disabilities.

Our Mission: The Center for Accessible Living is an innovative leader in empowering all people to achieve their goal of independent living while involving the entire community.

As with all board members, you need to be able to commit to regular meeting attendance, have the ability to receive communication by phone and/or e-mail and have some comfort in communicating ideas in a group setting.

This is a great opportunity for you to “give back” and use your experience to help shape policies and programs!

The Center for Accessible Living, Inc. is committed to principles of equal opportunity. People with disabilities, veterans and minorities encouraged to apply.

Please contact board@calky.org if you are interested, or if you need further information.

Thank you,
Tom Stokes
Chair, Board of Directors
Center for Accessible Living, Inc.

Disability Rights: More Than After-Dinner Conversation

- Information provided by Cass Irvin of Access to the Arts, Inc. -

More Than After-Dinner Conversation

"Disability Rights: more than after-dinner conversation" was the slogan on a tee shirt The Disability Rag magazine created as an awareness tool for their catalog sales. The Rag did this to draw attention to disability--in the right way--and show a different image of disability. It promoted a concept evoked by the Rag's perspective of disability cool. The catalog had bumper stickers, postcards, buttons and tee shirts with slogans on them. One tee shirt had a mermaid in a wheelchair and it said "Disability Cool."
What is "disability cool"?* Is being a wheelchair jock cool? Or being an activist? Having a sense of awareness? Does it refer to an attitude in disability rights? Are people "disability cool?" Or just things?

"It's disability cool to travel with a pack on your chair, slung over one handle, just like college kids do with their packs, particularly a ratty one," said a loyal Rag reader. "It's having the attitude that what you're doing is normal--no big deal-that projects the sense of disability cool. You're flaunting convention. Nobody's making any big deal about the disability."

In those day The Rag listed designer glasses and books on tape recorded by authors, like Nancy Reagan. Today examples include neon wheelchairs, glucometers in designer colors and Oxygen bars touting flavored scents and colored cannulas, just to name a few. www.ragged-edge-mag.com

October is Disability Awareness Month.

As disability advocates, Access to the Arts, Inc. tries our best to "get the word out." You might see something about it in the news but probably not. Unlike other minorities, people with disabilities don't have a good public relations campaign. They're either trying to cure us or rehab us.

By the way, the proper term is people with disabilities, disabled people. No cutesy stuff like "physically challenged." That's a term that gives us a false attribute. It makes it sound neat to be us: we are physically challenged! And, please, no "differently abled," or "able bodied." And three words about "crippled children" : we grow up.

To be honest, disability involves many aspects of life so sometimes it's hard to explain why our history, our issues are relevant or should be of interest to you. Media coverage of disability too often focuses on courage and cure and overcoming. Or the cost of health care. (We, by the way, know excellent ways to curb the high cost of disability but no one asks us.)

Why, you may be asking yourself, should you be more aware of disability? Well, when we got started in this disability advocacy business thirty years ago, there weren't so many of us, only about 10 percent. Now we are over 20 percent. So we'd be surprised if you didn't know one of us or aren't one, especially if you were here thirty years ago!

Disabled people are not thought of as a minority even though we are the largest. And the most diverse in nationality, ethnicity, gender, persuasion, size, age . . .

People with Disabilities in Movies

Turner Classic Movies (TCM) will dedicate the month of October to exploring the ways people with disabilities have been portrayed in film. Lawrence Carter-Long, recognized for his expertise in the arts, access and media, will join TCM host Robert Osborne for The Projected Image: A History of Disability in Film. The special month-long exploration will air Tuesdays in October, beginning Oct. 2 at 8 PM (ET).

Twenty-two years after the passage of the ADA and over a century since Thomas Edison filmed 'The Fake Beggar,' TCM will provide an unprecedented overview of how cinematic projections of isolation and inspiration have played out on the silver screen--and in the lives of people with disabilities.

"This is a valuable opportunity to take a deeper look at the movies we all know and love, to see them from a different perspective and to learn what they have to say about us as a society," said Osborne. Carter-Long will provide a historical background and insight on how cinematic portrayals of disability have evolved over time.

And--in a first for TCM--all films will be presented with both closed captioning and audio description (via secondary audio) for audience members with auditory and visual disabilities.

TCM's exploration of disability in cinema includes many Oscar-winning and nominated films, such as An Affair to Remember (1957), in which Deborah Kerr's romantic rendezvous with Cary Grant is nearly derailed by a paralyzing accident; A Patch of Blue (1965), with Elizabeth Hartman as a blind white girl who falls in love with a black man, played by Sidney Poitier; Johnny Belinda (1948), starring Jane Wyman as a "deaf-mute" forced to defy expectations; The Best Years of Our Lives (1946), the post-War drama starring Fredric March, Myrna Loy and real-life disabled veteran Harold Russell; and Charly (1968), with Cliff Robertson as an intellectually disabled man who questions the limits of science after being turned into a genius.

A complete schedule can be found at www.tcm.com

Ways You Can Be Cool*

Disability Cool is learning ASL (American Sign Language) not because you have to but because you can. The Center for Accessible Living conducts a "Conversational" Sign Language class. To register, please contact: Meg Deckert at the Center for Accessible Living, 502-589-6620; mdeckert@calky.org Accommodations available upon request. If this goes well they're planning to do it all around town.

National White Cane Safety Day is October 15. Come celebrate at Fourth Street Live from 11AM-1PM and learn more about this symbol and tool for independence. Blind and visually disabled people have used canes as mobility tools for centuries but it was not until after World War I that the white cane was properly introduced. The first of the state laws regarding the right of blind people to travel independently with the white cane was passed in 1930. It granted blind pedestrians protection and the right-of-way while carrying a white cane. Today there are different varieties of the white cane, each serving different needs.
www.timeanddate.com/holidays/us/white-cane-safety-day

To celebrate National Disability Awareness Month last year, Starbucks released a Starbucks Card with Braille lettering. The Braille card was first suggested at a symposium with national disability leaders in 2007. Starbucks has also taken steps to make stores accessible, including large print Braille menus available upon request. The reloadable Card is available now at participating Starbucks stores and available online at www.Starbucks.com/Card.

Each October, KQED as PBS affiliate in the San Francisco bay area, hosts a Celebration of Disability Culture, airing special programs that explore the complex web of experiences and issues faced by people with disabilities. To view the schedule go to: www.kqed.org/community/heritage/disability/index.jsp

Remember the song "Save the Last Dance for Me," and how the man tells the woman to go ahead and dance as long as they leave together at the end of the night? It's so romantic. She dances. He watches. And when the music's over, they put their arms around each other and go home. A huge Drifters' hit in the 1960s. The back-story: The songwriter was Doc Pomus, a blues singer who had polio and used crutches and a wheelchair. His wife was a Broadway actress who liked going out on the town.
www.tuscaloosanews.com/article/20071007/NEWS/71005012/1005/SPORTS0106

For a complete history of people with disabilities

Go to the Encyclopedia Of American Disability History. Susan Burch, Ed. Facts On File, Inc.: New York, NY. 2009. Burch and her colleagues have created a foundational text in the fields of Disability Studies and Disability History. www.dsq-sds.org/article/view/1291/1322

This information is provided by Access to the Arts, Inc., an arts and disability advocacy organization, in Louisville, KY. www.accesstothearts.org. For questions about this information, contact the links listed or contact us at DisaCool@aol.com

A Human Resources Manager's Experience in Disability Mentoring Day

- By Susan Rademaker -

I was fairly new to my role in Human Resources when I first heard about Disability Mentoring Day. I attended the meetings for the Center for Accessible Living; Business Advisory Council and heard there was a need for hosts for the event. I asked some questions, sought approval from my Director and volunteered to host our very first Disability Mentoring Day. I worked hard on coordinating people, schedules and the agenda. I thought the event went well but later read some constructive feedback from one of our visitors. We’ve made changes over the years and I think we are now getting ready to host our 5th annual mentoring day. We are so excited!

Why do we host Disability Mentoring Day? Well, the first time, it was simply because I was asked to. Now, we do it for a lot of reasons but really the question is why wouldn’t we host mentoring day? Disability Mentoring Day takes place during Disability Awareness Month (October) for a reason. Hosting mentoring day helps raise awareness that people with a disability have abilities. There are employees going to work every day who have a disability. Some disabilities are obvious upon observation but many are not. People with a disability deserve independent living just as those without a disability. Mentoring Day can accomplish several things. It does raise awareness to focus on what a person’s abilities are versus what the disability is. It creates partnerships with organizations which can be a resource for qualified candidates to work within our organization. In recruitment, we are always seeking new resources for qualified candidates.

We also want to do what we can to increase the confidence of students or other job seekers who have a disability. It’s difficult enough, when graduating from high school to feel confident about abilities. This is especially true when job seeking. It’s time for the real world and that can be overwhelming to a person with or without a disability. If we can match students up with our employees in the area of the interests, allow them some hands on tasks and opportunities to ask questions; maybe we can build confidence. Maybe we can help that person decide if that is the right career path for them. Maybe we can open doors for them or point them in the direction of the right doors.

In hosting Disability Mentoring Day, we’ve built relationships and we’ve raised awareness within our own employees. We’ve gotten hugs, thank you cards and letters of gratitude. We enjoy opening our doors to assist the community in any way we can. We hope we make a difference for our visitors but our visitors definitely make a difference for us!

Susan Rademaker is the Human Resources Generalist at NPAS, a part of Parallon Business Solutions. 

If you're a job seeker looking for an opportunity to job shadow, visit http://www.calky.org/events/6/disability-mentoring-day/.

CAL Has a New Look, Same Great Service

We have a new logo and a new website! This re-branding is an opportunity to refresh our discussion with the community about people who are living with disabilities and the language we use in talking about people who are living with disabilities. In many ways it is not a new vision, but a return to a lot of the traditional independent living philosophy ideas that were prevalent when the Center started. Our new tagline is “Disability Rights and Resource Center.”


Many of our materials are branded with the phrase, “Do you speak our language?” They highlight person-first language, emphasizing that words do matter. The power of labels can stigmatize, so we recognize the power of labels. Our language shapes our attitude.

By using people-first language, we're putting the person before the disability. In doing this, we hope to change how people see disabilities. We believe that disability is a natural part of life. It is not the impairment that prevents those living with disabilities from participating fully and equally in society. Rather, it is the fact that society has not taken into account the needs of persons living with a disability.

The logo reminds us of a rising sun or a lighthouse beacon. It is bright and optimistic, much like the future CAL envisions for the disability community.

Check out our new brand, logo and website at www.calky.org.

A Story About How We Can All Make a Difference - Suicide Awareness Day, September 10th

The Story of Kyle (Authur Unknown)

One day, when I was a freshman in high school, I saw a kid from my class walking home from school. His name was Kyle. It looked like he was carrying all of his books. I thought to myself, “Why would anyone bring home all his books on a Friday? He must really be a nerd.”

I had quite a weekend planned (parties and a football game with my friends tomorrow afternoon), so I shrugged my shoulders and went on. As I was walking, I saw a bunch of kids running toward him. They ran at him, knocking all his books out of his arms and tripping him so he landed in the dirt. His glasses went flying, and I saw them land in the grass about ten feet from him. He looked up, and I saw this terrible sadness in his eyes.

My heart went out to him. So I jogged over to him, and as he crawled around looking for his glasses, I saw a tear in his eye. As I handed him his glasses, I said, “Those guys are jerks. They really should get lives.” He looked at me and said, “Hey thanks!” There was a big smile on his face. It was one of those smiles that showed real gratitude.

I helped him pick up his books and asked him where he lived. As it turned out, he lived near me, so I asked him why I had never seen him before. He said he had gone to private school before now. I would have never hung out with a private school kid before, but we talked all the way home, and I carried his books.

He turned out to be a pretty cool kid. I asked him if he wanted to play football on Saturday with me and my friends. He said yes.

We hung out all weekend, and the more I got to know Kyle, the more I liked him. And my friends thought the same of him. Monday morning came, and there was Kyle with the huge stack of books again. I stopped him and said, “Boy, you are gonna really build some serious muscles with this pile of books everyday!” He just laughed and handed me half the books.

Over the next four years, Kyle and I became best friends. When we were seniors, we began to think about college. Kyle decided on Georgetown, and I was going to Duke. I knew that we would always be friends, that the miles would never be a problem. He was going to be a doctor, and I was going for business on a football scholarship.

Kyle was valedictorian of our class. I teased him all the time about being a nerd. He had to prepare a speech for graduation. I was so glad it wasn’t me having to get up there and speak.

On graduation day, I saw Kyle. He looked great. He was one of those guys that really found himself during high school. He filled out and actually looked good in glasses. He had more dates than me and all the girls loved him! Boy, sometimes I was jealous. Today was one of those days. I could see that he was nervous about his speech, so I smacked him on the back and said, “Hey, big guy, you’ll be great!” He looked at me with one of those looks (the really grateful one) and smiled. “Thanks,” he said.

As he started his speech, he cleared his throat, and began. “Graduation is a time to thank those who helped you make it through those tough years. Your parents, your teachers, your siblings, maybe a coach — but mostly your friends. I am here to tell all of you that being a friend to someone is the best gift you can give them. I am going to tell you a story.” I just looked at my friend with disbelief as he told the story of the first day we met. He had planned to kill himself over the weekend. He talked of how he had cleaned out his locker so his mom wouldn’t have to do it later and was carrying his stuff home. He looked hard at me and gave me a little smile. “Thankfully, I was saved. My friend saved me from doing the unspeakable.”

I heard the gasp go through the crowd as this handsome, popular boy told us all about his weakest moment. I saw his mom and dad looking at me and smiling that same grateful smile. Not until that moment did I realize its depth.

Never underestimate the power of your actions. With one small gesture, you can change a person’s life.

Tables Turned

- By Stephanie Hickey -

I am forever barred from ever accompanying my father on another one of his doctor’s appointments. Before I explain why, let me explain that from the time I was two, my parents have been taking extra care of me because I was a child with a disability. They attended every doctor’s appointment, therapy session and were always by side to ensure that I followed my therapists and doctors’ orders to the letter. And their constant nagging frustrated and infuriated me to no end!

Let me tell you all about my father. Joseph (I will not reveal his middle name on the internet because he really will kill me) Hickey had worked from the age of sixteen. And from that age through the next thirty-eight years on, he always did hard physical labor. My father worked in the hottest or coldest temperatures, was the first one to arrive and the last to leave. And he took pride that he was a man who worked hard to provide for his family. As someone born in the fifties, my father has the-male-provides-for-family mentality ingrained in his bones, along with an I-must-suffer-in-silence mentality. After working those sixteen hour days in the harshest conditions, Daddy would be there at the hospital when I woke up. He would sit and watch Foghorn Leghorn cartoons (doing impressions of Foghorn to make me laugh) and eat green jello with me.

Now, at his age, and after all those years of physically punishing his body, he cannot work any longer. And Daddy is starting to need taking care of. Having Cerebral Palsy, I worry about my parents aging--their bodies and health deteriorating--because I do not have the strength to care for them. But my going to his doctor’s showed me that I can care for my parents.

My father did not want me to go with him, but my mother asked me to, because we both knew he would down-play his condition. I convinced my father to let me tag-along by promising to be a good girl and stay quiet. I made this promise with the knowledge that once my dad and I were back there, I could relay to his physician all of the symptoms my father wanted to ignore and my father would not say anything to me because we were not alone.

This is just what I did. While Daddy just muttered, “Oh I only feel a little…”, disregarding his symptoms, I let him go on, but I spoke up adding, “Actually, Dr. Blank, my daddy has been feeling more…more…and more…” And while I said all this, Daddy glared at me with a “just-wait-‘til-we-get-home” look.

I delighted in Daddy’s reaction, because he now knew that it isn’t all that fun to have someone interfering in your medical treatment, even if it is someone who loves you. It made me laugh, remembering all those years he has been nipping at my back nagging that I walk heel-toe, heel-toe and asking, “Did you do your exercises today?” It also made me realize that even if I don’t have the physical capability to care for my parents, I still can ensure they get the best care. And don’t worry daddy, I know that you are still a far, far way away from that.

Ten Ways To Advocate For Change

- By Barbara Davis -

In today’s economy it is likely that many of us are feeling frustrated over budget cuts, lack of jobs and reduction in services. We may feel that our politicians are letting us down in the laws they enact or don’t. It is easy to become complacent and think there is nothing we can do. Fortunately, this is not true. Below are ten ways we can advocate for change on both the local and federal level.
 
Vote.
Presidential, state and local elections are equal in importance. The mayor, city council members, state legislators and other officials write or enforce laws that impact our daily lives, while the President and Congress work on similar issues on the federal level.

Join support groups, councils and coalitions.
Some groups provide advocacy and support. Councils and coalitions offer opportunities to advocate for improvements in transportation, housing, education, etc. If you do not know of any specific groups, councils or coalitions in your area that advocate for your particular interest, search the internet for this information.

Call or write your legislators.
Legislators know who can hire and fire them, and they pay attention to these voices. If there is an issue important to you, let your legislator know. Participate in calling and writing campaigns when asked to do so. Better yet, visit them when they’re in their local office if you can.

Don’t take “no” for an answer.
Find out who else you can talk to or what appeal process is in place, and proceed accordingly.

Don’t assume a problem can’t be fixed, or a law can’t be changed.
If you want sidewalks in your neighborhood, find out where to start and go from there. It may take time and require a variety of methods, but if it is important to you, there are likely others who feel the same way. Start writing or calling campaigns, get a petition going, or join a council that is already working on the issue. If you gather enough support, the sidewalks will come.

Attend rallies and public meetings. 
Officials of schools, transportation and other service providers pay attention at packed public meetings. If you want more services, increased funding or improved neighborhoods, go to these meetings and have your say. Large rallies can have the same affect. When legislators realize a large number of their constituents have certain views, they take notice, and vote on impending legislation accordingly.

Participate in surveys, focus groups and questionnaires.
Companies who produce technology and provide services want our input. Changes in healthcare, transportation, assistive technology and education have all come about due to surveys and focus group participation.

Google it.
Google can tell you where to write your legislators, how to start a support group, and who to talk to about the neighborhood sidewalks.

Go public with your issue.
Utilize social media to post videos or voice an opinion. Write articles online, address a letter to the editor of your local newspaper, start a petition on Change.org, or contact your local TV station with a story idea.

Photo Credit: Flickr

Becoming An Effective Advocate

[Uncle Sam image]

- By David Allgood - 

Being a citizen advocate is really an easy thing to do; but being easy does not make it less important. I cannot stress enough what an impact your letters, emails and phone calls make to our elective officials. These actions have already made a huge difference in restoring funds for the aging and disabled populations in Kentucky. If the current legislation at the time of this printing passes the State Senate, then we will have restored $10 million over the next two years.

I encourage you, your family members and your friends to register to vote, if you are not already registered, and make sure that you actually vote on election day. Legislators pay attention to individuals who actually vote and have the ability to hire or fire them through their votes.

Get to know your local, state and federal representatives. Hopefully you can set up a meeting in person when they are at home in their district. Let them know who you are, and what issues are important to you. They work for you and they actually look forward to gaining a base of knowledge that they may not have had before your interaction with them. Make yourself the go-to person when they are dealing with issues that are relevant to individuals in the disability community. You may not have the money that the big lobbyists have, but you do have the power of the ballot, and this could determine whether the elected officials keep their jobs or lose it.

So get yourself, your family and friends involved in this process because a large number of involved individuals can truly make a difference.

The 2012 KY primary election is May 22. You must be a registered voter by April 23 to participate. CAL has voter registration cards which you can come by and fill out if you need to register. For more information visit http://elect.ky.gov/.

Quad Rugby National Championships in Louisville THIS WEEKEND!

- By Keith Hosey -

The United States Quad Rugby Association’s (USQRA) Nationals have returned to Louisville this year. This is a full contact sport like you’ve never seen before. Called Murderball by some, Quad Rugby or Wheelchair Rugby is a “full-contact sport, [where] they smash the hell out of each other in custom-made gladiator-like wheelchairs…. In addition to smashing chairs, it will smash every stereotype you ever had about the disabled.” (Quote from the Description of the movie Murderball).

A couple years ago, I took a teen volunteer group to a Quad Rugby event (quarter finals or something) here in Louisville. As a group we volunteered and, having seen the sport before, I knew it was great exposure to the disability world and would confront many of their possible stereotypes and attitudes about disabilities.  

I’m not sure what their thoughts were about disability before the event, I think I heard one of them refer to it as a “Special Olympics” event.  The tone was not specifically derogatory but a very matter-of-fact, like much of the general public sees the Special Olympics, “that’s nice they have that, but they’re certainly not at a very high skill level” tone (Please know that I’m not knocking the Special Olympics. The athletes that compete in those events train really hard, do a great job, and deserve our respect). This event blew their stereotypes out of the water because these guys are just as athletic as LeBron and Peyton Manning and probably train twice as hard.

You have an excellent opportunity to see these world-class athletes up close and personal. Many of these players will also compete in the Paralympic Games http://www.london2012.com/paralympic-sport, in London right after the Olympic Games. These guys (and gals!) have more athleticism in their pinky than most people have in their whole able-bodies. If you are a true fan of sports, this is a must see event.

More Information, including the schedule, about the Quad Ruby Nationals In Louisville this weekend.

Mothers March -- A True Story

- By Cass Irvin -

Someone from the March of Dimes called my house shortly after I moved back to Kenwood Hill.  She was perky and pleasant and she told me all about the Mothers March.  No one from my neighborhood had, as of yet, volunteered to go door-to-door to collect and she noticed from my card in the files that I had collected in my neighborhood several years back.  She thought I was Mom.

She was calling to see if I'd be willing to do it again.  For one second I wanted to say what I heard my mom say when she didn't want to do something:  "Well, we have one of those here at home and I can't really leave her here all alone."

As I listened to the caller tell me how they wanted me to collect donations or leave information at each door, a little angel and a little devil fussed at each other in my brain.

Angel:  You can't say anything to her!  She can't see you.  She doesn't know!

Devil:  But how will she learn if someone doesn't tell her?

Angel:  You're saying it's for her own good, right?  You always say something like that when you want to justify meanness.  It will embarrass her.  It's not polite.  You have to be understanding and sympathetic toward people who aren't aware, who haven't had experience.

Devil:  You're too generous with people.  I'm tired of being the one who has to be generous, understanding and polite.

The caller paused.  She was waiting for my answer.

"Well," I said, "I think you have me confused with my mother.  I would be interested in helping out but I use a motorized wheelchair . . . . and since the houses in my neighborhood aren't accessible, I don't think I could do it.  But, thanks for asking."

Mothers March history
The March of Dimes is a well-known nonprofit group whose goal is to fight birth defects got its name and its start in the story of Franklin D. Roosevelt and Warm Springs, GA.

When Roosevelt started the Georgia Warm Springs Foundation, he wanted it to be a premier center for treating polio.  He soon realized treating polio wasn't enough--he wanted to find a way to prevent and cure it so he established the National Foundation for Infantile Paralysis, which later became the March of Dimes.

Originally, Roosevelt raised money by holding a ball in honor of his birthday every year. But it wasn't enough money.  Comedian Eddie Cantor, spoofing the popular March of Times newsreels, came up with the idea of a March of Dimes. President Roosevelt would urge all Americans to send him dimes in support of polio research.  He figured even in the height of the Depression, most people could afford a dime.  The first day, the foundation collected $17.50. But then the money kept pouring in for a total for 2.68 million dimes, or $268,000.

Over 60 years ago, parents in Phoenix, AZ organized a collection: "Turn on your porch light, fight polio tonight." In minutes, more than $45,000 was raised and the annual Mothers March Campaign was born. Mothers March is the first and longest-running March of Dimes fundraising event. What began as a door-to-door campaign to fight polio, a goal reached over five decades ago and has evolved into a campaign to give every baby a healthy start to life.

Today funds raised through Mothers March help fund lifesaving research and programs that help give more babies a healthy start to life.  Every year, hundreds of thousands of volunteers participate in this historic campaign, in communities all across America, to help raise funds and awareness.

Greater Kentucky Chapter Address: 4802 Sherburn Lane, #103, Louisville, KY 40207
Phone: (502) 895-3734    Email: KY365@marchofdimes.com
www.marchofdimes.com/kentucky/viewAllOffices.asp

Kentucky March events: www.marchofdimes.com/kentucky/4221.asp

Find the Funny

-- By Stephanie Hickey --

They say laughter is the best medicine. And I think this is true--especially in the case of our own disabilities. Living through a difficult situation taught me this. One of the facets of my disability is that I often lose my balance and frequently have a little wobble-wobble in my walk.

My grandfather developed Alzheimer’s and it devastated my family. He’d become disabled and no one in my family knew how to deal with the pain of that. A strange and funny facet of Grandpa’s disability is that he forgot that I had Cerebral Palsy. So when he’d see me trip or walk my wobble-wobble walk, he’d nudge my mother and mime drinking from a glass (to imply that I was drunk) and even went so far as to tell me that I needed to “lay off that hooch.” It bruised my heart to know that he’d forgotten my disability. I spent my childhood days at my grandparents, and my grandfather would sometimes be there during my therapy. He’d be sitting on the front porch watching my therapist and me jog around the block. How could he forget that? The reality of my grandfather losing his memories meant that we would lose him.

And you might think his self-explanation for my condition hurt even more, but the first time he’d made a crack. I found it funny--so I laughed. I laughed so hard! And it felt so good; it was a weird release for me (and my mother). Every time my grandfather would make a funny crack regarding my “alcoholism” (I soon began making jokes about my drinking problem) it made me laugh because I heard the affection in his voice. I could hear that he still cared for me and that eased my fear that I was losing him. Yes, he no longer knew I had CP, but he knew that I was I still someone he really cared for. Those moments also became some of the memories of my grandpa that I most cherish

It’s not the same as when someone points at you for walking funny or someone mimics the way you talk. But you finding the humor in your own disability can be strangely empowering. You are defining yourself, and in that definition a little self-effacing is always a good quality. And when I’m having a bad day--feeling low because I’ve hit some barrier in regards to my disability, I turn back to the memories of my grandpa and instantly feel better. Finding the funny in your disability is not easy because--for many of us--has been a point of mocking and/or cruelty from others, but it is possible. Even if it’s as simple as saying a word wrong, don’t be afraid to laugh about it. Embrace those embarrassing, silly moments because they can become great memories that give you strength to get through the bad days that we all have.

Photo Credit Flickr: http://www.flickr.com/photos/jcolman/2344915398/

Call Frankfort TODAY: Tell the Senate to Keep funding for Department For Aging and Independent Living!

Although you get many requests from us to make phone calls and you may wonder if they are effective and we can show you that they are. This session, through your efforts, phone calls, emails and letters to local newspapers we had $10 million dollars added in the House budget for the Department for Aging and Independent Living (DAIL), which includes PCAP, to help out elderly and people with disabilities.

Now is the time to really step up the effort as the Senate has the budget and will be making their changes. If you want to keep these essential services like PCAP and meals, you need to contact your Senator today and everyday and let them know that we want those funds kept in the budget.

We made a difference in the House and we can do so in the Senate by your encouraging your family and friends to make these calls to their Senator. Let's keep folks in the community by making these calls. Do your part today!

Also, if you have not already done so we need you to thank Rep. Jimmie Lee and Speaker Greg Stumbo for putting the money in the House budget. Let them know that you are thankful for their help!

Call your Senator at 1-800-372-7181 and tell them to keep the DAIL money in the budget.

Call Rep. Lee and Speaker Stumbo and thank them for putting the money in the DAIL budget. 1-800-372-7181.

What You Can Do: Call Frankfort EVERY DAY Until the Senate votes on the budget - toll-free 1-800 -372-7181

Leave a message for: Your State Senator and Senator David Williams.

"Keep the $10 million dollars added in the House budget for the Department for Aging and Independent Living (DAIL)!"

Click here to Find State Senator.

After you enter your name and DOB, you'll be redirected to a page with your voter information. You need your State Representative in Frankfort and your State Senator in Frankfort (not Federal).

Scroll all the way to the bottom and look for:

Legislative Districts / Information

Senate District:

Call Frankfort TODAY: Tell them people are more important than horses!

Dear Friend,

I have never had to ask for your help at a more serious time. I believe that if the Governor’s 6.4% cuts for the Department for Aging and Independent Living are adopted by the General Assembly, the Personal Care Attendant Program (PCAP) along with other essential disability programs may be eliminated. The Program, like many disability and aging services, has survived cuts in the past with adjusting costs at every level. It’s not a matter of crying wolf, your advocacy is necessary to keep the program – or prepare for the worst in July.

We are Kentucky’s largest minority and we have our voice and voting power.

What You Can Do: Call Frankfort EVERY DAY toll-free 1-800 -372-7181

Leave a message for: Your State Representative / Your State Senator / Representative Greg Stumbo / and Senator David Williams

“Don’t balance the state budget on the backs of disabled and elderly Kentuckians! Don’t cut lifeline services like the Personal Care Attendant Program, home care and meals!”

As the agency providing the program we can only do so much. Unless your State Representative and State Senator hear from you, your family, your caregivers, friends and Church members about how important the program is to you personally, I don’t hold out much hope.

The truth is, I need you to start calling and writing now, and keep on going until a budget is passed to help ensure that all Kentuckians with disabilities can stay independent in our communities. We need you to make phone calls every day and ask your family/friends to call too.

Thank you,

Jan E. Day, C.E.O.

Center for Accessible Living, Inc.

Talking Points

In the Governor’s proposed budget:

• The criminals in Kentucky are guaranteed 3 meals a day while 19,000 Kentuckians are on waiting lists for services from the Department of Aging and Independent Living.

• The Kentucky Horse Park was exempted from cuts – as it has in the past.

• Apparently it’s more important for the horses and the criminals to avoid cuts than disabled and elderly Kentuckians.

Today, too many Kentuckians are waiting for basic, lifeline services to help them live in their own homes.

• 19,000 Kentuckians are on waiting lists for home and community based services from the Department of Aging and Independent Living.

• 9,000 Kentuckians are waiting for meals while criminals get three meals a day.

• Many more are waiting in need of Personal Attendant Care and home care services.

• Years of state budget cuts and underfunding services with home & community based services must end.

• Home and Community Based Services improve quality of life and save taxpayer dollars by avoiding much more costly nursing homes.

• Legislators think that Medicaid protects all people with disabilities. Tell them that many people with disabilities don't have Medicaid – and cuts will hurt them the most.

• PCAP and home care services create jobs for Kentuckians and add to the tax pool.

To Find your State Representative and State Senator

Go to: https://cdcbp.ky.gov/VICWeb/index.jsp

After you enter your name and DOB, you’ll be redirected to a page with your voter information. You need your State Representative in Frankfort and your State Senator in Frankfort (not Federal).

Scroll all the way to the bottom and look for:

Legislative Districts / Information

House District:

Senate District:

----------------------------------

Photo Credit: Flickr

Honoring Dr. King’s Legacy

- By Keith Hosey -

Today is a moment we can take to celebrate a man who fought to make this country a better place, Dr. Martin Luther King, Jr. He is one of my heroes because he tirelessly stood up for the true American dream, equality.

I want to share his “I Have a Dream” speech in the hopes that you take 17 & 1/2 minutes to experience it – especially if you have never listened to the whole speech.

Two parts have hit home with me this year. The first is:

“Instead of honoring this sacred obligation, America has given the Negro people a bad check, a check which has come back marked "insufficient funds." But we refuse to believe that the bank of justice is bankrupt. We refuse to believe that there are insufficient funds in the great vaults of opportunity of this nation. So we have come to cash this check -- a check that will give us upon demand the riches of freedom and the security of justice. We have also come to this hallowed spot to remind America of the fierce urgency of now. This is no time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism. Now is the time to make real the promises of democracy. Now is the time to rise from the dark and desolate valley of segregation to the sunlit path of racial justice. Now is the time to lift our nation from the quick sands of racial injustice to the solid rock of brotherhood. Now is the time to make justice a reality for all of God's children.”

Over twenty years after the ADA, the disability community continues to experience high unemployment. People can't get into inaccessible businesses and transportation is often inadequate. Many children with disabilities continue to be segregated in schools unnecessarily – some refused diplomas and forced into “certificate” programs, widening the gap of inequality. More than ten years after the Olmstead decision, even though the current government war cry is about budget cuts and fiscal responsibility, people with disabilities continue to be warehoused in institutions (at a much higher cost to the tax payer) instead of living in the community. We, too, should have the fierce urgency of now.

The other, which has always held a place in my heart - and why I chose the image above, is:

“…for many of our white brothers, as evidenced by their presence here today, have come to realize that their destiny is tied up with our destiny. They have come to realize that their freedom is inextricably bound to our freedom. We cannot walk alone.”

Text of “I Have a Dream” (Because I couldn’t find a captioned video).

Why is Your Online Presence Important?

- By Keith Hosey -

Have you ever “Googled” yourself? If you are online, then chances are that you have some type of online presence. But what does it matter if you’re never going to run for office or become famous, it sounds like something only politicians, movie stars and other famous people need to worry about, right? Who would Google you anyway?

Potential employers, potential landlords, friends, neighbors, co-workers, business partners, classmates, teachers... you name it, anyone who is curious can look into your online presence. It’s the new first impression, digital impression, and it could harm you. So, if you want to make a good impression with anyone you may meet, you should make sure the internet isn’t giving you a bad name. Here is a simple, plain-English guide to online reputation management. I hope it helps.

Google Yourself

Step one, Google yourself. Try it with your full name “Keith Hosey,” your full name and city “Keith Hosey, Louisville, KY,” any nicknames (Let’s say I went by “Chip” – and I don’t) “Chip Hosey.” Your results will likely list other people by your name. For example, “Keith Hosey” returns a mixture of results for me, a priest in Indiana, a 20 year old in Dublin, Ireland, a recently deceased man in Michigan, and another Keith Hosey from Alabama on Facebook. “Keith Hosey, Louisville, KY” gets a different set of results, just for me. Knowing your first three pages for each search is important. You will need to take a close look at what results are showing up for your name.

Social Media Management

Unless you’re famous, have been in the news or listed online with some group’s website (member of the Rotary Club, etc.), then most of your results will be social media networks. Facebook, Twitter, Google Plus, Myspace… I have even more than those, I use Flickr for photographs, YouTube, LinkedIn, Delicious bookmarking site, Foursquare and more.

You have total control of your social media accounts, so let’s talk about management. Nobody uses Myspace anymore, right? Just because you haven’t logged into your Myspace account in three years doesn’t mean it’s gone! If you’re done with Myspace, delete your account. Otherwise, your profile picture from 2003 doing a keg-stand will live forever. If there are any other sites that you don’t use anymore, delete them all.

Next you need to look at all your active accounts. How much access are you giving to strangers? Most sites like Facebook, Google Plus, Flickr, Foursquare, etc. will give your total control over who sees what and how much. You can be invisible or you can be completely public. A good way to find out how to control those settings is to Google “[that social network]’s privacy settings.” You’ll find tutorials on how to restrict access to “only your friends” or to make your profile completely invisible to search (including Google Search!). Then you have to be proactive about what you share with whom. Make sure all of your status updates are not “public” or “everyone.”

You may also want to go in each network and clean up old photos or old status updates that you don’t want people making judgments about. This can be very time consuming and the quick fix is that you make your information private and only available to “friends.” But you can’t hide forever. Eventually, your boss, coworkers, landlord, friends, neighbors, business partners, classmates, teachers, etc. may want to be your “friend,” then it’s all open to them again. That person you were hiding your keg-stand photos from might have the “friends only” access, so don’t completely ignore this step!

Other Results

What about things you can’t control, like news articles, memberships, listings, etc. If you don’t have control of the source, then the only thing you can do is change the results. Google results are based partly on how much a link is clicked (and how recently it happened). So, if “Keith Hosey arrested for hunting rabbits out of season” is on my first page and I don’t want it there, I need to start clicking on positive links that are behind it in the search results. This will eventually push that link back to the fourth or seventh or fifteenth page. Hey, if it’s that bad and you don’t want it there, ask a couple friends to help. Unfortunately, there’s no other way around it. This can be a lot of effort, so ask yourself if you can live with it. For example, I signed up to be a part of an “International Talk like a Pirate Day” meet-up last year (It’s every September 19, me maytes!). Is it unprofessional? Yes. Is it goofy? Probably. Will it harm me? Not really. And in a couple years, it will fall back in the results to more current and more clicked items.

Do you have a disability?

Because I work at a disability agency, my name results have lots of disability results, disabilitymentor.net, blog posts like “I'd Like to Take the "Dis" out of Disability,” listings as “ADA Amendments” speaker, EEO filings… oh my! For me, I’m ok with the association with the word disability and it’s also part of my professional involvement. But if you have a hidden disability and don’t want potential employers or other people to know about it, you should make sure you don’t have it publically listed and searchable in Google. Is it part of a profile bio? Are you listed as the chairperson on your local National Association of Mental Illness website?

More tips and tricks

If you don’t put it out there, you won’t ever have a problem to worry about. Think before you post something on the internet, because it’s usually there forever. Try to stay away from making public your political views, your religious views, and any other hot topics. Try to stick to the old “Topics of Polite Conversation” rule of thumb. Also, remember that comments on websites, blogs and other people/pages on your social networks may be set to public, so be careful what you say. Just because your Facebook is set to “friends only,” your comment on your best friend’s page may be free and open for all to see. Finally, be proactive. You can set Google Alert emails on any keyword, just go to http://www.google.com/alerts and set it up for your name. This way, when there’s a new result for your name, you’ll know about it.

Photo Credit Flickr

Do you have any tips that I’ve missed?

10 Tips For Keeping New Year’s Resolutions

- By Barbara Davis -

1. Stick to realistic goals. Resolving to lose 100 pounds in six months will probably not work as well as one that requires a monthly weight loss of 5-10 pounds.

2. Know yourself. Are you a self-starter? Do you require support? Are you good at research?

3. Know the requirements of the goal. It is essential to know what steps, skills and knowledge are required for reaching the goal. It is impossible to work step 4 without this knowledge.

4. Plan your steps. Having a “blue print” will make things much easier.

5. Start small and work your way up. Taking baby steps is more likely to ensure you will stick with your goal than trying to do everything at once will. For example, if employment is your goal, sending out a bazillion resumes in a short time while trying to network with a large number of people is likely to be overwhelming and frustrating. Start out with smaller numbers at first and gradually increase the number of resumes and networking events as you go along.

6. Be willing to ask for help or support. Support groups such as Overeaters Anonymous, AA and job hunt clubs were started because some things are hard to do alone. Also, getting help from someone who has a skill you don’t is a wise move.

7. Set specific goals. It is easier to lose 50 pounds than it is to get slim. With the first you know exactly what you want to achieve and will know when you’ve gotten there. The second is vague and doesn’t provide a clear-cut objective or an end goal.

8. Be honest with yourself. Do you really want to do this, or are you setting the goal because it’s what others want, or what you think you should do?

9. Be patient. Some things just simply take time.

10. Cut yourself some slack. If you make mistakes or fall behind in your objectives, don’t let it distract you from your goal. Thomas Edison said, “I never failed; I only found 10,000 ways that didn’t work.” If you believe in your goal, keep working at it. You may have to try different approaches, but if you are determined, you will get there eventually.

Photo Credit Flickr