Dr. Randy Pausch, Living Well and Surviving Pancreatic Cancer

Please support pancreatic cancer research at: The Lustgarten Foundation and the Pancreatic Cancer Action Network .

Follow Dr. Pausch's journey at his personal website. It includes a Diane Sawyer ABC special about Dr. Pausch's journey with pancreatic cancer. It deals with many of the feelings encountered when you face a new life changing diagnosis and how to take back your life from your diagnosis. His webpage is the one I turn to for a good dose of self-embarrassment to kick my ass into gear. This blog is the result of one of those swift kicks.

As my illness has progressed and remitted, with every physical setback, I fall into the same grieving as when I first became ill. Dr. Pausch has not had the luxury of wasting all these self pity days like I have done. Who knows if any of us has that luxury?

Well, I have now publicly admitted that I am a real person, with a disability-that I feel sorry for myself. My public disability persona has never permitted the possibility of self pity. The media tells us that only brave, wonderful, inspiring people with disabilities are the norm. On any given day, we are just flawed people, like anyone else. I now believe my dishonest portrayal of the strong, stoic self has not benefited the newly diagnosed others, who think they cannot feel bad for their lot sometimes. So today, I admit it. I feel sorry for myself.

And Dr. Pausch's life is the best example I know to show the reality of this one life we get. I am much more passionate since I heard him speak. Just try to discuss politics and disability rights with me. I dare you! As John Mayer says, I am no longer "waiting on the world to change," I am changing it myself. If I don't, who will? But some days, on a much rarer basis, I still feel sorry for myself.

Dr. Pausch's website also includes an excellent lecture on time management. As a person with a chronic illness and disability, managing my time and energy determines my quality of life. Dr. Pausch has some excellent ideas in this lecture given at the University of Virginia.

Another available video is Dr. Pausch's famous "Last Lecture," given at his beloved Carnegie Mellon University. It is meaningful for those days when you feel like life is getting the best of you. It puts life, illness or disability, and death into a perspective that emphasizes embracing passionately what you can still do. It is also available in book form.

Remember Those Who Served for Us

Celebrate Memorial Day by remembering the heroes we have lost and honor those whose lives are changed forever by a lifetime disability. Remember those serving today and pray for their well being. There is a fundraising campaign to create a memorial for those Veterans who are Disabled for Life. Follow this link to their homepage to learn how you can help this cause.

http://www.avdlm.com/

See the Person

One of the most disappointing areas of disability awareness that exists is language that identifies us by our disability. We are people first. The mainstream media outlets are some of the worst offenders in this arena. I know some persons with disabilities are not offended by the word "handicapped," but I am one person who rejects that label. Historically, it refers to persons with disabilities begging with their "caps in hand" to support themselves. When I complained to the Virginia Fair Housing Board about their use of the language, their employee stated that it would take a new law to change it. I cannot imagine a government agency being able to institutionalize slurs against, gender, race, or ethnicity. I doubt you would see a slur against any other group plastered on parking placards and signs all over the country.

Some people may say it is only language, it is opportunity and access that matter. I understand, but I also disagree. Language is powerful. It ingrains in our brains perceptions and ways of looking at people. I am a person first! I also happen to have other traits such as disabled, a blogger, environmentally concerned, spiritually driven, and intellectually curious. So why does society box me into one definition of my multi-faceted, complex self?

I understand that no one gets it right all the time, including myself. We all revert back to our ingrained, learned behaviors, but is it too much to ask the mainstream media and our government officials to lead the way?

If you believe language matters and want more information on this issue, click on this link . http://www.disabilityisnatural.com/

Other imortant information may be found at:

http://www.etcil.org/etiquett.htm

http://findarticles.com/p/articles/mi_m0825/is_n2_v60/ai_16514166

http://www.txddc.state.tx.us/resources/publications/pfanguage.asp

http://www.sanantonio.gov/planning/disability_handbook/disability_handbook.asp?res=800&ver=true

Access is not historically consistent, so arrest me?

On April 25, 2008, Mike Allen reported, in the Roanoke Times, that a judge in Roanoke, Virginia criminally convicted a woman for violating zoning ordinances because she made her private home accessible for her mother who uses a wheelchair. The battle stemmed from a pair of French doors that the local Architectural Review Board decided did not meet their standards. Never mind, that the window that the doors replaced were vinyl and did not meet the historic standards either. Never mind, that historically, the window was originally a door.

The neighborhood, deemed historic, has a few beautifully restored homes, but it has a higher number of rundown homes that lower income homeowners cannot afford to update, due to prohibitive ARB standards. The neighborhood also has issues with urban crime, so it is not a historic showplace by any stretch of the imagination. For decades, the ARB has tried to force this neighborhood into an upscale status with questionable progress. It also is littered with modern commercial buildings, hardly a poster child for historic preservation.

In the past, this ARB has prevented residents from building affordable wheelchair ramps and installing outdoor lighting for persons with vision loss, yet they permitted the new Art Museum to move a historic building facade because, obviously, art is a public benefit. The new building is an extreme example of modern architecture. Why would it benefit the community for a person with a disability to access their private dwelling? Why would a person choose to live at home rather than in an institutional setting? Certainly, independent living is a public good. Put a person with a disability on that ARB and you might find out it is more important than an building's appearance. In this case, it is not a centuries old Roman ruin we are talking about.

The Virginia Fair Housing Board weighed in, supporting the ARB. The judge convicted this woman, who dared to pursue access, because her doors did not meet the Americans with Disabilities Act standards for an accessible door. My phone call to the Virginia Fair Housing Board resulted in their stating that private home modifications are not held to ADA standards. The federal Access Board website clearly states that the Americans with Disabilities Act does not apply to private residences. So what standards did this judge use? Did he create a new precedent that a person with a disability cannot customize their own private home to meet their own access needs? Does a private homeowner have a social responsibility to increase the accessible housing stock by creating a universally accessible home, even if it is cost prohibitive or not their personal choice for their own needs?

Is it a crime to want to care for your own mother at home? Is it a crime to want your own life to be independent? What was the judge thinking? And when does history trump civil rights? After all segregated restrooms may be historic, but who would advocate that it is a good idea to "preserve" them? Even the historic lawn at Mr. Jefferson's beloved University of Virginia has temporary wheelchair ramps because even Mr. Jefferson knew that civil rights always matter first.

Related links:

Mike Allen's story in the Roanoke Times
http://www.roanoke.com/news/roanoke/wb/159535

The Federal Access Board
http://www.access-board.gov/

The Virginia Fair Housing Office
http://www.dpor.virginia.gov/dporweb/fho_index.cfm

City of Roanoke Architectural Review Board http://www.roanokeva.gov/85256a8d0062af37/vwContentByKey/N255CS4Z724FGUREN