By Cilla Sluga, CCDI Member

Growing up I had a cousin nicknamed "Butchie" or "Butchie Baby". As he grew into adulthood, he asked us to call him by his name, August or Auggie. It was a difficult transition for all of us. Decades later, some still fall back to the old name. Auggie's request meant he wanted us to see he was no longer a Butchie. He was a man and wanted us to acknowledge that. Every family has a similar story. I do not know one person who refused such a request.

Yet, on a broader level, this same action is called political correctness and many say it has gone too far. Critics charge that no one can say anything about anyone without offending. As if it's about offending. Others allege it is tyranny to be expected to talk decently about others. They say it's their right to be politically incorrect. Just Google the phrase "politically correct" and you will see what I mean.

Are the names we call others a window to understanding and acknowledgement, or nothing more than what we use to communicate and they convey nothing more than information? As I write this, Senator Joe Biden is peddling backwards as fast as he can. He is getting a lot of flack for saying Senator Barach Obama stands out in relationship to other African-Americans because he is so articulate and clean. Biden says he simply chose the wrong words. I think it tells us how he feels about African-Americans at his core.

As people with disabilities we have a personal stake in what is politically correct. It's more than harmless name calling; it defines who we are and our struggle for equality and justice. Who benefits from calling a group struggling for equality by the old names? Obviously, it benefits those who have the power and want to maintain the status quo.

Demanding an understanding of another's culture, status or position in a society is far from tyranny. It can be a matter of life and death. For example the "N" word dehumanized a people and made it easy to oppress and hang them.

For people with disabilities, it meant a sub-human existence, abuse and death. Imbeciles went to insane asylums. Freaks worked in circus sideshows. Spastics were hidden from the public. Those words described the individual in totality and their position on society. If we are to change the hearts and minds of others, we need new words that convey the dignity and equality we fight for.

The words we use are exceedingly important. Each is a "little packet of meaning [that] infers understanding". (changingminds.org) Likewise, the words people use represent whether or not they accept the change we want to see. If they continue to use the "old words or names" then they have rejected the meaning and status that the new words (worlds) bring.

Words are loaded with meaning. They create mental pictures, beliefs, principles, orientation and more. People with disabilities, as members of an oppressed group, need to embrace political correctness, not just for ourselves but for all oppressed people. It is our friend and a powerful tool we can use to create change. Don't make fun of it, stand up for it.


By Jessica Hayes, PR and Marketing Coordinator

Chicago area disability groups including Feminist Response In Disability Activism (FRIDA), Not Dead Yet and Chicago ADAPT were able to finally secure a meeting with the American Medical Association (AMA) on February 20, 2007 to discuss the controversial "Ashley Treatment." Ashley is a nine-year-old girl from Washington State whose parents have utilized hormone therapy, and elected to have their daughter's uterus and breast buds removed in order to keep her permanently child-sized.

The advocacy groups held a nationally publicized protest outside of the Chicago AMA offices last month, and then followed up with faxes and phone calls demanding a meeting. The AMA owns the medical journal Archives of Pediatrics & Adolescent Medicine in which news of Ashley's treatment was first published in October of 2006.

The AMA claims that publication of the treatment does not signify their support, and the journal's editor even called the treatment "ill-advised." Disability advocates however do feel the AMA has an ethical responsibility, particularly in cases that involve the treatment of children and adults with disabilities.

"When they published that article they raised the prestige of the doctor that did that surgery on Ashley," said Rahni Patrick, a representative of Chicago ADAPT who attended the AMA meeting. "The AMA also gave other doctors another tool in the tool box on how to treat people with disabilities. We don't want that kind of treatment."

Dr. Michael Mavers, AMA's chief executive officer, and Dr. Cecil Wilson, chairman of the AMA's board of trustees attended the hour-long meeting with the advocates. Although no promises were made by either doctor, the advocates are optimistic that this will open an ongoing dialogue between the AMA and disability community.

Patrick said she hopes the dialogue will lead to statement from the AMA calling for a moratorium on the Ashley procedure.




CHICAGO - Recognizing that nursing home residents with severe disabilities deserve [motorized wheelchairs] immediately, the U.S. District Court for the Northern District of Illinois entered a consent decree on February 28th resolving a class action discrimination complaint brought by four individuals with disabilities against the Director of the Illinois Department of Healthcare and Family Services. The decree (Jackson v. Maram No. 04-C-0174) mandates that all Medicaid-eligible nursing facility residents in Illinois be provided with, when medically appropriate, a motorized wheelchair.

The named plaintiffs, who all live in Medicaid-funded nursing homes, filed the original complaint for themselves and other nursing home residents who were denied or not provided medically-necessary motorized wheelchairs, and these residents spent many days confined to their beds.

The complaint alleged that denying the applications for power wheelchairs was in violation of the Social Security Act, the Rehabilitation Act, and the Americans with Disabilities Act.

"The Department of Healthcare and Family Services has a responsibility to assure that nursing homes who participate in Medicaid help people with disabilities become as independent as possible," said Max Lapertosa, an attorney from Access Living who represented the plaintiffs.

Under terms of the decree, among other actions, the Department is required to:

• notify nursing home residents of their right to a motorized wheelchair when medically necessary;
• notify nursing facilities of their responsibility to assess residents for motorized wheelchairs, using qualified and trained professionals; and,
• ensure that residents receive motorized wheelchairs if recommended as medically necessary.

In addition, the Department of Healthcare and Family Services is required to take disciplinary action against nursing homes that fail to ensure that eligible recipients receive power wheelchairs.




The TAX Guide for Parents is a free pamphlet available to parents of children with disabilities and their professional helpers, from the Family Resource Center on Disabilities. The free Pamphlet explains the special tax deductions parents of children with disabilities are entitled to in educational services, transportation, professional services, medical treatments, evaluations, lab exams and tests, medicines, equipment and supplies, childcare for employment purposes and volunteer expenses. The free pamphlet can be obtained by sending a stamped (78 cents), self-addressed envelope to:

TAX Guide for Parents
c/o Family Resource Center on Disabilities
20 E. Jackson Blvd., #300
Chicago, IL 60604

For More Information, please call: Charlotte Des Jardins (312) 939-3513; (773) 324-6645




Justice Department Publishes Guide on ADA Compliance

The U.S. Department of Justice (DOJ) is preparing guidance material for use by state and local governments in complying with the ADA. The "ADA Best Practices Tool Kit" provides guidance on identifying barriers to access in government programs, services, activities, and facilities and how to correct them. The first installment, released in December, provides an overview of the ADA and relevant regulations. A second section covers notice and grievance procedures and includes a compliance checklist and sample notices and policies. The information is posted on DOJ's website at http://www.usdoj.gov/ . Additional installments will be posted throughout the year as they become available.

Supreme Court Takes on Special Education Reimbursement Case

The U.S. Supreme Court will consider whether parents must be reimbursed for enrolling their children with learning disabilities in private schools after deciding public schools are unable to meet the student's needs.

The case, Winkleman v. Parma City School District, was brought to the Supreme Court following a federal appeals court ruling that tuition reimbursement is available under the Americans with Disabilities Act (ADA) to parents in such circumstances.

Expanding Your Market

The US Department of Justice, Civil Rights Division has issued a new Technical Assistance Document aimed at business. This new document is part of their "Expanding Your Market" series.

The new document "Gathering Input from Customers with Disabilities" stresses the importance of gathering information from customers with disabilities regarding their preferences, needs and requirements. This document can be found on-line at: http://www.ada.gov/business.htm

Other documents in the "Expanding Your Market" Series includes:

• Customers With Disabilities Mean Business
• Accessibility Benefits Older Adult Customers
• Building a Diverse Customer Base
• Tax Incentives for Business

By: Valerie Brew-Parrish, M.S.

"People with disabilities do not want to be patted on the head and be shown pity. We need to take out the word sympathy in how we treat people!" This statement comes from Tony Arellano, a Joliet resident who is a special education teacher, disability rights advocate and a person who lives with his own disability.

Those who know Arellano are captivated by his energy and commitment to disability rights. He has been a long time member of CCDI. He serves on the Joliet Mayor's Committee for Citizens with Disabilities, the Will County Disability Advisory Council, the Illinois State Rehabilitation Council and is chairperson of the Statewide Independent Living Council.

Arellano became interested in disability rights while working for the Edison Company.

"In 1974 a sheltered workshop wrote to the company to ask for simple jobs that could be done by persons with developmental disabilities," said Arellano. "I started looking for packing jobs to farm out. I also looked for jobs that would develop job skills. In a few years, I had developed jobs involving power tools, industrial painting, manufacturing, and dozens of other jobs. The workers produced quality products."

Arellano believes it is imperative for employers to take a person with a disability seriously when they are applying for a job.

Arellano struggles with his own disability. He had a car accident when he was hit by a drunk driver some time ago. It left him with a brain injury. At first he was very confused and could identify people by where they were but not by their face. Arellano still copes with short term memory difficulties and has problems walking long distances.

A favorite past time of Arellano's is being a Spotter for the Joliet Police Department. Spotters are on the look out for people who illegally park in spaces designated for people with disabilities. Along with comrade Bang Long, Jr., Arellano attended a meeting with the police chief to initiate the Spotter's Program.

"I suggested we go on patrol with a police car that we could summon when a violation was spotted," said Arellano. "All sides were agreeable to this plan and the Spotters Program was born."

Arellano is a well educated man. He has a master's degree in special education from Governor's State University, a master's in education from Northern Illinois University, and a bachelor's degree in psychology from Northwestern University. One of Arellano's main goals in life is to make a difference in the lives of children.

"I want to show students that 'disabled' does not mean that I can't."

While serving in Viet Nam, Arellano realized the great impact his high school teacher, Vera Smith, had on him. He had an opportunity to thank her. Some day, Arellano's students will also be thanking him.



The Brain Injury Association of America (BIAA) has entered into a partnership with ABC Anchor Bob Woodruff and his family to raise awareness of brain injury and to administer the newly created Bob Woodruff Family Fund for TBI to assist servicemen and women and their families affected by the war in Iraq and Afghanistan.

Woodruff sustained a serious brain injury as a result of an improvised explosive device while on assignment for ABC News in Iraq in January 2006. Although he received superior care, Bob, his wife Lee, and their extended family recognize that many individuals with brain injury do not receive the services and supports needed to regain their independence. They also understand the lack of funding in the public, private and military sectors, and best of all, they want to help.

In an effort to "give back" to the people who saved Bob's life, the family has established the Bob Woodruff Family Fund for TBI. The Fund will raise money through events and other activities. Donations will be used to make grants to nonprofit organizations serving members of the military who have sustained a TBI. In some circumstances, funds may be used to provide direct financial assistance to military personnel and their families and/or grants for medical research, public education, awareness and prevention of TBI.

Woodruff will also file a series of reports for World News, Good Morning America and Nightline throughout the month of March.

For more information on the Bob Woodruff story and TBI, order In an Instant: A Family's Journey of Love and Healing. In an Instant is the frank and compelling account of how Bob and Lee Woodruff's lives came together, were blown apart, and then were miraculously put together again-and how they persevered, with grit but also with humor, through intense trauma and fear. The book retails for $18.00 and can be purchased on the Brain Injury Association of America's website http://www.biausa.org/.