I had the opportunity to learn about Norovirus (Norwalk-like Virus). Norovirus is highly contagious; It can make you feel crumby. The symptoms are diarrhea and vomiting for a short period of time. The tricky part is you may be sick for three days before the symptoms occur and you won’t even know it. As soon as you start to feel sick please stay home and when the symptoms are gone you need to wait at least 72 hours before you go to back work or school.

When you are sick you need to stay away from other people. You need to worry about becoming dehydrated. You may not feel like drinking water or eating, but it is important to take it one teaspoon at a time and get fluids in—you will feel better soon.

 Those caring for you need to take the typical precautions, wearing gloves and carrying soiled linens and clothes in bags away from their body. The virus can live on surfaces for a long time…up to fourteen days. It is important to clean surfaces with a bleach and water mixture—let the mixture dry on the surface that is how you sterilize a location versus simply cleaning it when you immediately wipe it dry.  Always remember to wash your hands—use hot water and soap.  You know you are doing a good job of washing your hands when you can sing Happy Birthday or the Alphabet song all the way through!!!! 

Stay healthy, stay strong and wash those hands, again and again, and again…

 Arc of USA National Convention in Albuquerque New Mexico Wed 11/5/2008 thru Saturday November 11/8/2008  Members of the Arc of VA came from Louisiana Richmond and Northern VA to represent our entourage of 7 strong Arc Self Advocates and leaders. Although we had a group of seven, which seemed like a lot __ some states brought 50 self advocates and leaders.  It was an interesting Arc of USA national convention St Nancy and Jill presented “Co Executive Directors A walk in our shoes” this past Thursday on November 6^th 2008. Also at our presentation we showed the documentary Changing Words and Changing Minds. The 7 of us took St Nancy to Sandia Casino and we also went to an elegant dinner for her birthday. On Saturday we all got in a rental car to Santa Fe for sights lunch and shopping. Also we all got a chance to meet Gerardo Rivera a news reporter from Fox News. It was exciting to learn that “A Life Like Yours” Is a passion of Mr. Rivera’s as well… You would have been proud of our team Jamie Trosclair was a wonderful leader and a networker. Tia Marsili, Carrin Brandt, Kate Olson, and Kathy Jenkins spoke up loud and clearly at the townhall meetings about issues effecting children self advocates and building our “ Brand’’ so every one regardless of his or her ability will feel the passion of the Arc movement.

I also had an opportunity to advocate on behalf of Ruqia– and she, successfully,  got her senior smart trip card.

Of course an outing would not be complete without “good food” …remember my disabilty culture article?  The three of us went to Ruby Tuesday for lunch!

At 4:00pm in the heart of Falls Church the red carpet was laid and the State Theater opened its doors for a wonderful event. Guests who arrived had their pictures taken as they walked down the red carpet– thanks to Elisa  Goulart, our volunteer photographer for the night. “I never ever had a red carpet moment before!” This statement was heard over and over again– it truly was a night to celebrate the stars of Northern Virginia–The Arc of Northern VA families and friends!

It was like a dream inside the theater. The tables were decorated with stars. Kathy Jenkins the photographer from The Arc had her I have a dream pictures up in the lobby.Thanks to ServiceSource, we even had Captain Kirk, Elvis, Betty Boop and a few more famous stars to round out our night!  But what really made the night most special was seeing all the people who have impacted our lives dressed up… looking beautiful and handsome.

The night was filled with a lot, but it seemed to fly by… We saw a movie Changing Words–Changing Minds, we all read the Self Advocate Credo, we gave out the Rusty Garth and Jessica Burmester Awards, Leslie Braunstein gave the state of The Arc speech, Frank Stevens and Casey Hammeke were wonderful MC’s.

Oh yes, a very important part of running a non-profit is having a strong board of directors. We would like to welcome Phil Pedlikin, Donna Goldbranson, and Denise Carmady as new board members. Our officers were elected as well, Laurie Kusek as President, Leslie Braunstein as Vice President, Michael Toobin as Treasurer, and Casey Hammecke as Secretary. And we would like to thank those leaving our board Ray Burmester, Jorge Martinez, Sonya Stone and Amber Nightingale.

It was an amazing night. I really felt like a star, surrounded by 200 more!

Special thanks to Delegate Chuck Caputo, Delegate Jim Scott, Senator Chap Peterson, Senator Patsy Ticer, and Arlington County Board member Barbara Favola all of  whom made it out to celebrate a wonderful evening.

Usually JDI hosted its annual meeting at the Elks Lodge, but last night it was a formal affair at the Waterford at Fair Oaks. Everyone looked beautiful, the food was phenomenal and of course the highlight of the night was the disc jockey and the dancing!

People with disabilities and employers were there from different job sites including, McDonalds Restaurant, Annandale Sport and Health Club, George Mason University, Sydexo, Tyson’s Corner and The Connection Newspaper (with over 18 years working with JDI)! In addition to celebrating work and living in the community JDI honored a client and staff member who both passed away over the last year–although they are gone physically…they were both with us in spirit as we celebrated years of successes! We face tough budget times ahead, but when you experience the energy and talents of the clients, families and staff of JDI–it is easy to remember that any money spent to support JDI is money that was “smartly invested” in our community… one employee and employer at a time!

 I would like to say congratulations to Pat Vinson Mercer and her team for 20 years of supporting A Life Like Yours in the work community and here’s to 20 more years.   See you at The Walk for Autism in Prince William County on Saturday or  The Arc’s Annual Meeting on Sunday between 4:00-7:00 p.m.!

           There were 100 folks that attended the event. The event was hosted by Joanna Barnes who looked lovely. Healthy food was provided by Service Source and there was beautiful Art all around us. Speakers included many individuals with IDD, including People First Self Advocate Richard Ferlazzo. Did you know Richard Ferlazzo lived in CVTC years ago and he was happy to celebrate many many more years living in the community?

           In addition to speakers Rick Hodges play The Three Generations Of Imbeciles was performed by Jill, Lisa, Nancy, Rick and a special appearance by Phil Caldwell the Alexandria CSB Director. It was fun to be together again. People enjoyed the story even though it was as done. A highlight of the night included hearing Carol Skelly, Chair of the CSB, talking about the importance of building community no institutions. Yesterday I asked you if there was a disability culture…Well if you had attended last night you would have met a lot of nice, thoughtful, hard working, people and you would have great food.

We were at a conference in Alexandria and I was the keynote speaker along with John Kemp. It was a wonderful experience to be up on stage along side Mr. Kemp. He was born with out arms or legs back in the 1950’s. Before the American Disability Act was even thought about. John Kemp’s father believed that John should have a life like every other child… so he encouraged John to participate in his community– to the best of his ability.

It worked, John is a lawyer, is married, has kids and even grandkids (even though he looks too young to be a grandpa). John Kemp is also the President of the United States International Council on Disabilities. He has more than 30 years experience in the disability movement. Back to my question is there a disability culture. Well, according to John Kemp there is a disability culture. The definition of culture is “ The Totality of Socially transmitted behavioral patterns, arts, beliefs, institutions, and all other products of human work and thought.” Let’s make that simple…Culture is learned behavior, behaviors we learn from our family, friends, and community.

So is there a disability cultutre? Nancy and I asked some of our friends and they said yes. We asked our friends to describe the disability culture from their point of view and they did…

• People with disabilities are nice. We have to be. We need others to help us get around the community and sometimes we even need others to help us complete day to day tasks.
• People with disabilities are accepting of others regardless of our ability.
• People with disabilities are good planners and worked to be organized. We need these skills because it takes a lot of work to get through a day. For example getting to work means using public transportation, scheduling metro access, or driving your own vehicle if you know how to. All these things require planning and to be honest flexibility as well. People with disabilities are good with technology… you should see some of these people use a blackberry.
• People with disabilities are thoughtful and have a strong heart and passion.
• People with disabilities love music and to dance, even though you are in a wheelchair.
• People with disabilities are spiritual and believe in a greater good.
• Lastly and most importantly people with disabilities love good food.

These are just some of our ideas if you have any to share please add them to my blog…

                                                  Jill’s Journey

In June of 1995 Jill Erin Egle myself graduated with a diploma from James Madison High School. Thoughts of college weren’t even in my mind because of my Intellectual Learning Disability. I was already thinking where would I work and what kind of career would I have?

   I really wanted to be an actress or gymnast but those careers are hard to come by so I began a very long journey of little pay and lots of different careers. I have done everything from entering data for US Senator from Louisiana Mary Landrieu from being a courtesy clerk at Safeway, a stocker at Michaels, and I even did a brief position at SOC Enterprises. It has not been an easy Journey. Careers were hard to keep and often times I didn’t like what I was doing. Did I say I didn’t get paid very much money? Let me put it this way, I never ever got paid as much as my brothers who are younger than me. I even got let go from Safeway because I was being too courteous.

I am 31 years old even though I like to feel that I’m 28 years of age. I have learned that it is very important to like a career and have the rights support regardless of an ability. There are 4 elements that make a career successful.

1)     Good Supervisor

2)     Good Colleagues

3)     Good Support Job Coach, husband, wife, boyfriend and family member

4)     Oh there is one other element that also important good pay and raises.

The two careers that I have been most successful in are both careers that I started as a volunteer – at the YWCA and at The Arc of Northern Virginia. They had all the elements I listed above.

I left the YWCA after 2 hard years of working there which was July 26^th 2005 to July 26^th of 2007. Now I am an Intern Leadership Co Executive Director at the Arc Of Northern Virginia. I have been at the Arc Of Northern VA two and a half years. I was promoted September 3, 2007 as a Co Executive Director Leadership Intern for one year. I get regular salary, benefits and comp time I can used. I share an office with St Nancy Mercer and we go to all meetings together. My focus this year is on three different goals;

1)     To facilitate the people first self advocacy group which is the second Thursday of every month at the Arc Of Northern VA 98 North Washington Street Falls Church VA 22046

2)     To Increase The Arc of Northern VA membership.

3)     To Increase the 30^th Annual Patriots cup

4)     To get rid of the R word.

It has been very effective this year with the bill changing Mental Retardation to Intellectual Disability. Erin Thompson, Jill Egle, St Nancy Mercer, Jamie Trosclair and Vivian Alonso have been taking a stand for this bill because no self advocate likes to be called a retard or retarded because it hurts our feelings in our lifetime and it puts us down oh by the way the MR ID Bill passed for this year 2008 at the General Assembly Session but there is a reenactment clause for next year 2009.

Does this sound like a lot of work? It takes a lot of energy to go to Richmond back and forth from Northern Virginia.

Although St Nancy Mercer said you don’t have to share all your secrets I have one more to share with you Green Vault

Ann Long asked how staff can help students to be better self advocates.

Staff can teach them how to do things:

To ask for help when they need it: if there is a crisis at school they can ask the principal or teacher or peers for help.

To speak up for themselves and their rights; when they want to advocate when a guy is bothering them, they can say leave me alone. If the guy says no they can run away yelling for help.

Staff can ask what their interests are; Meaning what sports, activities or clubs are out there. Help them to get involved in and what they like.

They can ask what kids want to do; meaning what they like to do when they graduate high school and then help them do that.

They can ask what they good at meaning what are the things they are good at and what are the weakness areas.

They can help them to participate in the IEP’s. Meaning that they need to take a stand and participate in the IEP’s to set there goals in life when they graduate from high school.

They can be a self advocate in People First

Also teach them how to make good choices and problem solving.

Patrons Senator: Ticker and Howell

Virginia Senate Committee:Courts of Justice

Senator Marsh Chair

First of all, I would like to thank Chairman Marsh, the rest of the committee members and our patrons Senator Ticer and Senator Howell.

I am Jill Egle’, co-executive director for The Arc of Northern Virginia   and a young woman with an intellectual disability. I come here today for myself and for thousands more who have a diagnosis of an intellectual disability. Some of us can speak for ourselves with words, prepare and present speeches, others speak with our eyes and smiles– still others make statements by simply changing the way we sit in our wheel chair–regardless of how we communicate we all come today and asking for “Dignity.”

As the Senate Committee on Courts of Justice, you already are familiar with the history of how people with intellectual disabilities have been and continue to be treated in this commonwealth. People with intellectual disabilities have been sterilized, institutionalized, victimized and stigmatized for hundreds of years– as Virginia has learned how to best “support” and “understand” people who have intellectual disabilities.

• In 2008, Virginia continues to rank near the bottom in funding community supports that will promote the equality necessary for people with ID/DD to live “A life like yours”.
• In 2008, Virginia continues to be one of the only states that is looking into re-building institutions that provide homes rather than short term crisis care for people with ID/DD.
• In 2008, Virginia is one of seven states that continue to use the words Mental Retardation in the state code to refer to thousands of Virginians with intellectual disabilities.

Today I come to you as a voice for many with and without disabilities, we are not simply asking for a word change….we are asking for our “Dignity” and the opportunity to live in a state where we valued for the  ”resources and talents”  we bring, not as a burden and worse yet “a retard.”

Please support Senator Ticer and Senator Howell’s leadership in changing the words mental retardation to intellectual disability in the Virginia State Code.

Thank you for listening to me and thinking of the thousands of others who could not be here today… individuals with intellectual disabilities, their families and friends who are living in every part of Virginia and are asking for the same “Dignity”– but in his/her “own voice”….in his/her “own way.”