The 21st Annual Disability Rights Conference, "Access to Success: Opening the Door to Transition," took place on June 6-8, 2005 at the Springfield Crowne Plaza Hotel. Approximately 400 people attended what many are calling CCDI's most successful conference to date. Click http://www.ccdionline.org/conference.php?archive=no to learn more about the conference.



By Vickie Wilson

What an amazing conference! Conference for me is a time to recharge my battery. It is a time that reminds us how important the work we do is and how much more work we still have left to do. It is also a time to visit and learn from fellow advocates and realize we are not in this fight alone. Not that any of us have ever stopped fighting for equality, but as I listened to Senator Graham, Director Suter and many of our members talk about the issues, many that we have been fighting for years, I found myself getting really fired up about the injustices that people with disabilities must still face everyday and I consciously rededicated my time, energy and talents to the disability rights movement once again.

An enormous amount of hard work goes into planning and producing our annual conference and I would like to take just a moment to thank many of our friends in the disability rights movement for their support, we simply could not do it without your help. Thank you to all of our staff, they worked very hard to bring you this outstanding conference. I would also like to thank all of our board members for their help in planning the conference, providing workshop monitors and supporting the staff during the conference.

A special thanks goes to the following co-sponsors: Rob Kilbury and the Department of Human Services-Division of Rehabilitation Services who provided us with assistance through scholarships to get folks to the conference; the Illinois Assistive Technology Program who provided us with an outstanding Expo and numerous other supports throughout the conference; the Statewide Independent Living Council who provided scholarships to enable people to attend the conference and loaned us staff at the registration table (Thanks Tara and Abbie!); the Illinois Network of Centers for Independent Living who also loaned us staff (Thanks Joyce!); the Great Lakes ADA and Accessible IT Center; Judith Towner Dunning and John Austin who co-sponsored the band at our party Monday night; Gordon Ball Home Service, Knuckleheads and Matt Canum who provided the materials and built the accessible raised gardens used in our workshop and then allowed them to be donated to the Springfield Center for Independent Living (SCIL) for consumer education; Gary Pinkley, Mark Kean and David Hayes for helping us get all of our materials loaded and transported to the hotel and back and special thanks to Gary and David for transporting the gardens to SCIL; Marilyn Schierl who arranged and donated the beautiful flowers at the head table; and of course a big thank you to all of our presenters and keynote speakers Senator Chuck Graham and Director Carl Suter.

The members of the Coalition are wonderful, strong and talented people who know we must be involved to make a difference and that we must always be working to improve the lives, communities, opportunities and choices not only for ourselves, but also for those younger advocates coming. We must set the example. A couple of opportunities to do just that will be coming your way. First, as CCDI reaches its' 21st birthday we must make plans for our future. The face of disability services and advocacy organizations in Illinois has changed over the past twenty years and as a result CCDI needs to reevaluate our role in Illinois and clearly define our direction for the future. We will be holding a number of focus group meetings across the state during the summer and fall to collect information from our members to ensure you have input on the future of CCDI. This information will be provided to the board of directors to use as they develop the 1-5-7 year strategic plan. A schedule of the focus group meetings and their locations will be in your next newsletter. Please plan to actively participate in these meetings and help determine the direction of your Coalition.

The other opportunity coming to you will be in October with the Freedom Ride. The Coalition will be working in conjunction with several other organizations to put this event together and ensure its success. The focus of the event will be to bring awareness to the Community First Act, a bill that would require dollars spent on a person in an institution to follow them into a community setting should they choose to live in the community. It will also be an opportunity to bring awareness to other disability issues and to regenerate the disability community.

Participants and Host Sites will be making a tremendous commitment by being involved in the Freedom Ride. Participants will be responsible for raising money to help defray the expenses of the four-day event, they will be traveling a lot of miles in those four days and working at each of the nine stops to promote Community First and disability rights. Host sites will be coordinating media events and coverage as well as logistical issues and assisting in obtaining sponsors to provide a meal to the Freedom Ride participants. More information will be coming about the Freedom Ride…watch your Catalyst, ask your chapter president, call the state office, get involved!





Washington - Secretary of Labor Elaine L. Chao announced the official theme for October's National Disability Employment Awareness Month - "Workers with Disabilities: Ready for Tomorrow's Jobs Today."

"This year's theme emphasizes that people with disabilities are a vital part of America's workforce - they are important to our country's future economic success!" said Chao.

The theme will be used by private sector, federal, state and local governments and advocacy organizations to plan events and programs that showcase the abilities and skills of job candidates who have disabilities.

Public Law 176, enacted by Congress in 1945, designated the first week in October as "National Employ the Physically Handicapped Week." President Harry S. Truman designed the President's Committee on Employment of People with Disabilities to carry out the law. Congress changed the name to "National Disability Employment Awareness Month" in 1988 and the responsibility of leading the nationwide recognition was transferred to the Office of Disability Employment Policy (ODEP) in 2001. ODEP is the nation's first assistant secretary-level office specifically addressing policies that impact the employment of people with disabilities.

ODEP will collaborate once again with the American Association of People with Disabilities (AAPD) to nationally sponsor Disability Mentoring Day. Disability Mentoring Day is a large-scale, board-based effort designed to promote career development for students and other job seekers with disabilities through hands-on career exploration, job shadowing and internship/employment opportunities.

Disability Mentoring Day will take place during National Disability Employment month on October 19, 2005.

To learn more about Disability Mentoring Day, contact the following:

For information about mentoring opportunities in Illinois:
CCDI
(217) 522-7016 (V/TTY)
(800) 433-8848 (V/TTY)

For information about national Disability Mentoring Day:
AAPD National Office
(202) 457-0046 (V/TTY)
(800) 840-8844 (V/TTY)
http://www.aapd-dc.org





In June, a federal judge ruled that Amtrak can charge a group of wheelchair users extra to ride in the same car together.

U.S. District Judge Harvey Bartle III said that under federal law, Amtrak is required to supply only one space to park a wheelchair and one space to store an unoccupied chair per passenger coach and that they can charge extra for anything beyond that standard.

The ruling is a result of a group of Pennsylvania disability rights advocates train trips to Washington DC. The group from Disabled in Action, regularly make the trip to lobby at the capitol, but Amtrak says it was costing too much to remove seats every time the group wanted to travel together in the same car and planned to charge an extra $200 over the regular $90 ticket price to cover the cost of removing seats.

The group sued claiming Amtrak was violating the ADA.

Attorney Steven Gold said in a recent Associated Press article that "If you and your family and friends and sisters and brothers and cousins, more than 20, wanted to travel to Washington, you would get a discount as a group."

Marcia Golgoski, a spokeswoman for Amtrak said the company's policy for charging for the removal of seats doesn't just apply to passengers with disabilities. Other groups who wished to have a party on the train that required seat removal would also be assessed the fee.



Valerie Brew-Parrish, M.S.

There are no ifs, ands, or buts about it - we are living in scary times. It used to frighten me when emergency personnel from Springfield would descend upon Southern Illinois and practice excavating bodies from the earthquake that will one day rock and roll. Illinois sits on the New Madrid fault. The earthquake of 1812 made the Mississippi River flow backwards and it rang church bells in Boston.

It isn’t just natural disasters that Americans fear. Just a decade ago, the Murrah Federal Building in Oklahoma City exploded killing hundreds of innocent adults and children. My friend Ray Washburn, a blind vendor, was in the federal building on that fateful day. Ray enjoyed inviting the little children to his cafeteria for free ice cream. Miraculously, Ray made it out of the rubble that was left after the explosion.

Then came September 11th and it became tragically clear that evacuation plans were not in place for persons with disabilities. Employees who use wheelchairs were instructed to go to a designated place and await help. Although most of the physically disabled persons perished, Michael Hingson and his dog guide made it safely out of the building.

President George W. Bush signed Executive Order 13347 on July 24, 2004. This order, “Individuals with Disabilities in Emergency Preparedness,” establishes a key component in all emergency preparedness programs to include and provide for persons with disabilities.

Red Cross shelters rarely have provisions for support animals or power to run assistive devices such as ventilators or dialysis equipment. Para transit companies have not made contingency plans to transport persons with disabilities back and forth to shelters. According to a Harris poll conducted in 2004, 56% of persons with disabilities do not know who to contact in their communities concerning emergency plans.

The International Building Code calls for elevators to be operable for persons with disabilities in times of disaster. They are known as “Evacuation Elevators.” These elevators have a back up supply in addition to ventilation systems that prevent smoke build up. All restaurants, movie theaters, and other public buildings must have evacuation plans in place that includes persons with disabilities. Written information regarding emergency preparedness must be available in alternate formats such as large print, Braille, cassette, and computer disk.

Disasters can occur anytime and anywhere. The effects of the crisis can be somewhat minimized by having a plan of action in place. It is wise to assemble a disaster plan that includes at least a seven day supply of medication. Make sure you have extra wheelchair or scooter batteries, plenty of oxygen, catheters and backup batteries for ventilators. Have a backpack or bin stuffed with nonperishable food, a battery operated radio, flashlight, extra pair of glasses, blankets, change of clothing, etc. Make sure if you use a wheelchair that more than one exit from your home is accessible. Contact utility companies to alert them if you have life support equipment.

All of us must be prepared when disaster strikes. Planning today may save your life tomorrow.



By Mars Thomas

Movies and television are not just entertainment. They have the ability to shape opinions, introduce new ideas and solidify attitudes about our world and the people in it. The inaccurate portrayal of people with disabilities in movies has long been a sticking point for many disability rights advocates.

“Movies From Mars” is a monthly column written by Marlin “Mars” Thomas. Mars is from Alton, IL where he works at the IMPACT Center for Independent Living. He studied film at Southern Illinois University at Edwardsville. Mars has muscular dystrophy and uses a wheelchair.

E-mail Mars at: mars@ccdionline.org

New on DVD!

Rory O’Shea Was Here (2004)
Staring: James McAvoy, Steven Robertson, Romola Garai
Director: Damien O'Donnell
Length: 1 hr. 44 min.

I'm sure by now everyone has probably has noticed my annoyance with able-bodied actors portraying us in movies. They usually over simplify characters to mere one dimensional, cardboard cut-outs of poster children. Although no lead actors with disabilities are in this film, Rory O'Shea Was Here makes a roll in the right direction in that the two main characters exist in a reality of disability. I was engrossed and pleased with this story of friendship surviving the many obstacles of life.

The movie opens with Michael Connolly (Robertson), a man who has cerebral palsy. He uses a chair and has difficulty with speech. He has been a life long prisoner in the Carrigmore Residential Home for the Disabled. No one really understands his speech, so the staff uses a book with the alphabet in squares for him to spell things out. His life is humdrum and simple until the arrival of the obnoxious rebel Rory O'Shea (McAvoy).

Rory is a young man with Duchenne muscular dystrophy, and he feels trapped in the institution. Although Michael finds Rory hard to take at first, he finds out that Rory understands his speech perfectly. This opens up the world for Michael and the two become best friends. Rory makes Michael realize that there is much more out there than Carrigmore. Together, their true journey begins as they search for a flat, look for a personal assistant and go out like other young adults. They run up against many obstacles familiar to people with disabilities, but other problems they face are just symptoms of being human.

I have a few gripes about the disability perspective in the film. Relationships seem unattainable to these blokes. I think they are way too complacent. The film perpetuates the stereotype that we have no sexuality. There is a slight mention in the film, but it wasn’t meaningful. Another annoying thing is obligatory scene where the PA tells off the person with a disability, or shows them "tough love." This is way overused.

The actors were good, but this was a great chance for disabled actors that was not utilized. Filmmakers, please put us in your movies. We are waiting and ready! I am happy with the film, but there is still much more to accomplish.

Overall, Rory O'Shea Was Here was enjoyable and moving. The acting was true and beyond simple melodrama plus the characterization was beyond the study of a medical diagnosis. There were some problems with portrayals and stereotypes, but the film engaged my interest. Very few films can make me laugh out loud and cry, but this film did it all. Rory and Michael had some great lines and a strong friendship. So, pick this film up wherever you can.

I'll leave you with a line from Rory that he delivers to the woman in charge upon leaving Carrigmore: "Look, if I said somethin' earlier to offend ya' or anything . . . [short pause] good!"

Quality: 3 and ½ stars
Disability: 3 wheelchairs



By: Charles M. Smith

On May 26th of this year, I had the pleasure of attending a disability panel discussion involving myself, another panel member with a disability and several dozen Bloomington Junior High School seventh graders. The students were given the opportunity to ask different questions about our disabilities and were also able to check out some assistive devices I brought along for the day.

The children were not sitting back in some auditorium, but were instead gathered in a large circle around us. I took part in the second day of discussions and by the time we had finished, four separate classes had participated.

These discussions were part of a unit put together by Lis Hiltabrand. Hiltabrand had worked with the school and other teachers to create this unit on disabilities for her students. The Unit includes a before and after test on various disabilities and also reading material such as the book The Acorn People, a classic short novel about a summer camp for children with disabilities. The children learn about various types of people with disabilities such as wheelchair users, the hearing impaired and those with visual disabilities. Other disabilities that are touched on include mental illness and learning disabilities. Students participate in writing activities, open discussion and of course, her primary goal of reading.

"There's simply not enough time to cover everything," said Hiltabrand. "They are so into it, they love learning and understanding things."

Hiltabrand has been doing the disability unit for about twelve years now. In the beginning it was no more than a panel discussion involving staff members from the LIFE Center for Independent Living, but it quickly expanded.

Hiltabrand began teaching eight years ago as a special education teacher in the Pontiac school district. She originally worked with children who had Downs syndrome and then moved on to work with other students who had developmental disabilities and behavioral disorders. She is currently part of the English Department at Bloomington Junior High School.

Hiltabrand said the lessons on disability impact her students in a number of ways, foremost being that of compassion.

"Clearly compassion is in there somewhere. I don't know whether it's long term or short term because I do the unit at the end of the year," said Hiltabrand. "The idea of asking a person if they need help, that's huge seeing a person in a grocery store and not staring at them, the little things."

Other outcomes from Hiltabrand's unit on disability include students that volunteer to assist their classmates who have disabilities and others have even signed up for sign language classes at LIFE CIL.

When asked if it is her job to spread understanding, Hiltabrand smiles and says, "I don't spread understanding. I barely do any of the talking. I like to think I facilitate understanding."

As a participant on several of Hiltabrand's panel discussions, I can say that I have learned a great deal from her students. I have come to understand that to have a person gain understanding you must be open and willing to answer questions. I have been asked everything from what video games I like to how I can raise my own son. I think that the fact I have a son near their age makes a difference. I'm a dad, not too different from their own.

We have often been told that our youth are our best hope. I agree. I feel that many of the students who leave Mrs. Hiltabrand's class are more likely to in the future to have better coworker and employee/employer relationships with people who have disabilities. Her students will be more likely to have meaningful dialogues with people who are disabled and less likely to view us as objects of pity. It would be nice if more unites like the one Hiltabrand has put together could be taught in our schools. I look forward to next year and the next set of eager faces.



By Jessica Hayes, Public Relations & Marketing Coordinator

The Acorn People: (1976)
Author: Ron Jones
Publisher: Bantam Doubleday Dell Books for Young Readers Division

When I was 10 years old, my fifth grade teacher read the class a book called The Acorn People. While the actual story of the book was fuzzy in my mind, I remembered it turning out to be a pretty good experience. Everyone liked the book and it sparked a lot of discussion about disability. As an adult, I have always looked back on the reading of this book as a pretty forward thinking thing for a teacher in 1985 to do.

When I read about Bloomington teacher Lis Hiltabrand (see the story above) using The Acorn People in her classroom to talk about disability, it brought a smile to my face, but I was also intrigued. I started wondering how my 30 year old eyes would view this book, and I was curious to see if the message was still relevant.

I was pleasantly surprised. Like any good book, it has stood the test of time.

The Acorn People is about Camp Wiggin, a Boy Scout camp converted into a summer camp for children and teens with disabilities. Author Ron Jones tells this true story from the point of view of a first-time camp counselor (presumably himself) who doesn't know what to expect.

Jones deserves praise on two major points. The honesty of his own feelings toward the campers is absolute. The book chronicles his first experience working with children who are disabled. A mix of pity and repulsion is his first response, but not to fear, his opinions and feelings do change throughout the course of the novel. Jones’ portrayal of the campers themselves is also praise worthy. They aren't heroic or special - they’re just kids. Their disabilities become secondary as their personalities are revealed. Jones gives the teenage campers real depth through their typical interests in things like make-up, rebelling and sex.

While the major themes of The Acorn People have stood the test of time, other aspects of the novel have not fared so well. Use of words such as handicapped and mongoloid are wildly inappropriate to the modern reader, and accommodations such as ramps are repeatedly referred to as "conveniences" in the pre-ADA era in which the book is set.

Terminology aside, The Acorn People offers young readers an opportunity to explore disability in an interesting, age appropriate way. Proper explanations about word choice are essential, but I still highly recommend this book to any young reader. As an adult, you just might enjoy it as well.





Volunteer Greg Rowden was honored on June 7, 2005 for his work at the CCDI state office. Rowden received the Volunteer of the Year Award during the Coalition's Annual Awards Dinner.

Rowden has volunteered hundreds of hours over the past year through a variety of projects. Most notably, Rowden serves as the voice of The Catalyst and other CCDI materials that are recorded on to audio tape. His background in radio broadcasting has been an asset to CCDI, and helped make him a vital part of the office.

In addition to reading CCDI materials aloud, Rowden has also begun volunteering many hours addressing legislative issues at the Capitol. His recent election to CCDI Board Secretary will allow Rowden to chair CCDI's Legislative Committee and continue his work.

Rowden is a member of the Sangamon County Chapter where he is currently serving his first term as President. Previously he was the Chapter’s Vice-President and Advocacy Committee Chair.

The CCDI state office staff and Board of Directors would like to thank Greg for all of his outstanding volunteer work.



By: Susy Woods, Project Manager

CCDI has received a grant from the Department of Commerce and Economic Opportunity (DCEO). This grant will enable CCDI to work closely with DCEO in an effort to provide more opportunities for people with disabilities to be part of the workforce.

Although in the early stages, this project hopes to produce a virtual One-Stop portal that people can access not only for job opportunities in their community, but also for information about such things as education, DHS programs and public assistance programs. In time, DCEO hopes this website will become an umbrella of a great many variety of opportunities to help people with disabilities have more access to the tools necessary to become part of the workforce.

At the present time, this is in the pilot stage of implementation and is still being tested and evaluated. Part of what CCDI is doing has been to set up two evaluation teams to look at the website for both accessibility and content and to report back to DCEO on what works and what doesn't. One of the teams will be different disability organizations/ agencies who will evaluate the site from the viewpoint of their members as a whole. The other team will be people with disabilities who will look at the usefulness of the site for individuals. These people represent a wide array of disabilities as well as different parts of the state.

Stay tuned and watch your Catalyst as the project progresses for more exciting updates.





CCDI lifetime member Pam Heavens was named as the recipient of the Illinois Network of Centers for Independent Living's (INCIL) Ed Roberts Excellence in Independent Living Award. The award was presented to Heavens on the evening of June 7, 2005 by INCIL Executive Director Ann Ford during CCDI's Annual Awards Dinner.

The award came as surprise to Heavens who was moved to tears during the presentation ceremony.

"I feel like I have won the Oscar," said Heavens during her brief acceptance speech.

Heavens is currently the Executive Director of the Will-Grundy Center for Independent Living in Joliet. Among her many achievements as an advocate, is Heavens devotion to accessible and affordable housing for people with disabilities. She is a leader both in the Joliet area as well as at a statewide level. CCDI's Board and staff would like to congratulate Ms. Heavens on her well deserved award.