| JeffSpace: A State of Mind | JeffSpace Blog |
 
1999-2001 
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Saturday, December 17, 2005
Jeffrey's Passing
 We have some very sad new for the readers of JeffSpace.net, JeffSpace.net/blog, dmdpioneers.org and JeffSpace.net/NIVnews. Our son, Jeffery died on August 31, 2005. We are deeply saddened by his loss. It was quite unexpected, since his health had been very good, despite Muscular Dystrophy. He was a wonderful son, whom we loved and treasured. Jeffrey appreciated life and lived it to the fullest. He touched many lives and provided a shining example of what can be accomplished when you are determined to make a difference. We certainly felt blessed to have him for twenty-eight years and miss him immensely. There are two brief writings; both by authors unknown, that we think exemplify Jeffrey: “I believe that though my life was short in years, it was full of experience, joy, love and accomplishment; that my own immortality will reside in the memories of loved one left behind.” “Some people come into our lives and quietly go; others stay for a while and leave footprints on our hearts and we are never the same.” Sincerely, Pete and Joan McAllister jandpmcallister@comcast.net Alexandria Times: The Lessons Jeffrey McAllister Taught Me www.alextimes.com/issues/9/opinionPerspective_01.html
Posted by Jeff at exactly 7:01:00 PM.
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Man of Strength
Man of Strengthby Rich Clingman (09/01/05) Jeff McAllister (28), who some would call "a victim" of Duchenne muscular dystrophy, was a man of action: founder of the DMD Pioneers and the NIV Users Group; an advocate for the disabled. Though he lacked the strength to lift a finger, he reached to touch the lives of thousands. As a boy he was given so very little hope. "This boy will live, never to be a man." Mother, father, unsure whether he could cope, Challenged the boy to faith, to love, to life, to plan. "But, poor boy, poor child, poor family, poor life. Never to be a father. Never to have a wife." Shortsighted, self-centered, unlearned, closed mind, Open thy eye! See what faith can find! An advocate for the stranger. A graduate from college. A strength, not to stand, Still stands to rescue, stands to teach. A mind far beyond The goal of simple knowledge. A heart, a hope, a love moved to action, Reaching far beyond arm's reach. A pioneer for life. A lover of music. A "Son of Joy" to the end. A faith in his God. A man of action, so amazing. In lives touched, you live on, Man of Strength, Dear friend!
Posted by Jeff at exactly 6:56:00 PM.
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Authentic Manhood
Authentic Manhood Mother, father, do you face challenges with the prospect of your son "never living to his potential"? Then teach your boy to replicate the example lived out by my friend Jeff in his twenty-eight years. Teach your boy that there is much more to manhood than gray hair and more strength than that borne by muscles. In The Quest for Authentic Manhood, Robert Lewis defines Authentic Manhood with four attributes. Authentic Manhood:
I am proud to have known a living example of Authentic Manhood, and am saddened by his passing. Jeff McAllister rejected passivity. Unwilling to sit on the sidelines, Jeff took up the cause of increasing the quality of life and prolonging the lives of boys and men with Duchenne muscular dystrophy and other disabilities. Jeff McAllister literally took responsibility for every breath he breathed. Having lost muscular strength to even take a breath, Jeff chose to live-on using NIV—non-invasive ventilation—, requiring his personal initiative for each breath. And Jeff saw it as his challenge to promote NIV and prolonged-life for men and boys with Duchenne, putting into action his love for others. Jeff McAllister led courageously even when some attacked him as preachy or condemned his activism. This Pioneer pressed on even when it seemed he blazed trails with so few following. This man who couldn't raise a finger reached around the world, touching thousands of lives and leaving a legacy of relationships and insights that live on. Jeff McAllister never sought a payout for his investment in the lives of others except the payout of life. Jeff sowed seeds anticipating a harvest, knowing it might not be in this life that those rewards would be revealed. Do you seek manhood for a boy who may pass too young? Teach him the principles lived by Jeff McAllister, the principles of Authentic Manhood: Reject passivity; accept responsibility; lead courageously; expect the greater reward, God's reward.
Posted by Jeff at exactly 6:46:00 PM.
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Monday, August 01, 2005
Rave Reviews, Mediocre Turnout
It seems that the completely realistic and unsympathetic movie, "Murderball," is not receiving the box office numbers that the hype surrounding the movie may have predicted. According to an article in today's Washington Post, the movie may be "...Taking an Unfair Hit" because of some unfortunately, sadly obvious reasons. It looked like the film would be a slam-dunk when it hit theaters, just the kind of lively, fun, can-do movie that becomes a textbook example of savvy summer counterprogramming.It's a sad commentary on how people still have a hard time accepting that disabled people are not necessarily sympathetic figures looking for pity. Fortunately, for this movie, ThinkFilm is sticking with the movie and trying to build an audience by reducing the number of theaters it is showing in. The strategy is already paying off, with box office grosses increasing day-to-day and week-to-week, a sign that a picture is doing well.I'm hopeful that this new plan for what is pretty obviously a critically acclaimed film could make this a sleeper hit, similar to "My Big Fat Greek Wedding." Hopefully.
Posted by Jeff at exactly 7:23:00 PM.
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Thursday, July 28, 2005
Sometimes It Does Take a Lawsuit
 An interesting article from Tuesday, the 15 year anniversary of the Americans with Disabilities Act, highlights how a lawsuit is sometimes necessary in order to get things done. The article from the Asbury Park Press, of New Jersey, shows how difficult it can be to get even basic accessibility. Here is the basic issue: The year-old Monmouth County Agriculture Building on Kozloski Road cost $500,000 to design, $5 million to build and $500,000 to furnish.Additionally, the complainant actually had made several attempts to get the issue rectified before the building was complete. Unfortunately, the county ignored her concerns and said that the ramp was fine as it was. The ramp, however is designed in such a way that someone, like myself, who uses a lift-equipped van for transportation would have great difficulty exiting their vehicle because of the uneven surface. The simple solution would have been having the ramp integrated into the sidewalk that was being put in, which is the only approved way of doing it. I hope that the county will see the error of their ways before wasting tons of money fighting a losing battle. The law says that all new construction must comply with ADA Standards, period. They could've easily avoided even the $1000 required to alter the ramp they installed by listening to the concerns and having the sidewalk poured differently. As I said, sometimes it does take a lawsuit.
Posted by Jeff at exactly 5:29:00 PM.
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Tuesday, July 26, 2005
Liftoff for the Future
 I was very happy to see the shuttle launch today and that, at least to me, it looked flawless. It's hard to believe it's been 2 1/2 years since the last shuttle mission (after Challenger it was only two years). So, I am hopeful this will lead to many more missions and important scientific discoveries.Here is part of what I wrote on the day after the Columbia disaster in 2003: I read an interesting quote from someone (sorry I don't know who) on the Internet that said something along the lines of "Dying in an explosion didn't make them heroes, strapping into the seats before blasting off was what made them heroes." FLASHBACK: 2/12/2003 -- Dual Benefits: Spinoff Technology from NASA
Posted by Jeff at exactly 12:37:00 PM.
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Sunday, July 24, 2005
Darius Update: On the Road
 You may remember me mentioning the Darius Goes West project on this blog a few months ago, well it looks like the cross-country road trip began on Friday. The project web site is providing frequent updates and photos. Of course, they have the requisite blog which will monitor their progress as they head from Georgia to California and back.The gist of the project is that Darius' friends want to take him from Georgia (where he's never left the state) to Los Angeles to attempt to have his wheelchair overhauled on the MTV show "Pimp My Ride." They will be filming the entire journey and making stops all over the country. I'll been monitoring their blog for any interesting entries and mentioning them right here. By the way, you can make donations to support the project on their web site.
Posted by Jeff at exactly 4:56:00 PM.
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Reasons for 2012 Decision?
Here is an interesting commentary, on why the United States shouldn't have gotten the 2012 Olympics, from The Gimp Parade on July 6: ...the absolute and total failure of any United States media to provide real coverage of the Paralympic events in Athens in 2004 should have been enough to make America ineligible to host any international Olympic party. After the Olympics, the Paralympics are the largest sporting event in the world with over 4,ooo athletes from 120 countries competing in the Summer Olympics of 2004. Although the Paralympics began in 1960, they have been part of hosting the Olympics themselves since 1988 and accommodations for the Paralympics are now well-integrated into the bid process of any credible host city candidate.I also had some commentary on this issue during the Olympics last summer (unfortunately, the event mentioned was never televised). Maybe a more direct approach is necessary to get the television coverage that the Paralympics definitely deserve.
Posted by Jeff at exactly 12:46:00 PM.
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Murderball: Redefining Disability in Film
The upcoming documentary "Murderball" (click here for trailer), about the crazy world of Quad Rugby, has been getting a surprising amount of mainstream press coverage. Recently, one of the "stars" of the film appeared on MSNBC's Scarborough Country to discuss the film and what they hoped to accomplish with it.SCARBOROUGH: Mark, is that the worst thing somebody can do for you, is try to treat you like a victim, try to hold the door open for you, look into your eyes and try to show you pity?Obviously, this is not going to be but a "sympathetic" portrayal of disability. Honestly, from the clips I have seen, it reminds me of my time back in college. Living with about 25 to 30 other disabled students is a truly bizarre and surreal experience, but extremely fun. I hope to be able to see this movie some time in the near future. Hopefully, it will not be as difficult as finding "Rory O'Shea Was Here" on video, which is not available at most video stores.
Posted by Jeff at exactly 12:25:00 PM.
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Sunday, June 26, 2005
Where Have I Been?
Good question. Sorry for the brief disappearance, it's been a little crazy.After being elected Chair of the Commission, I started becoming inundated with e-mails. Hopefully, that will level off and I can have more time to write a few things here. Probably during the weeks I have a meeting (which are held the second Wednesday of each month, not including this July, thank God) you won't hear anything from me, but I will try to keep that no more than five days of silence at a time. Additionally, my attendant has been out sick for the last two weeks, so I haven't actually been able to follow my regular routine. So, that's the reason. Hopefully this week will be better and everything can be back to "normal."
Posted by Jeff at exactly 12:04:00 PM.
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Thursday, June 09, 2005
Commemoration Day Photos
A full-page photo spread appeared in today's Alexandria Gazette Packet newspaper, which unfortunately was not available online. I have copies of two of the photos that appeared and include them below. Commemoration bench and plaque before unveiling.  Dedication ceremony.
Posted by Jeff at exactly 8:32:00 PM.
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It's Official!
 I was officially elected Chair of the Alexandria Commission on Persons with Disabilities at our monthly meeting last night, although I don't actually take the position until July 1. It's exciting and a little daunting to think that I will be in charge for two years. I have a couple of ideas that will hopefully make the commission even better.
Posted by Jeff at exactly 8:27:00 PM.
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Monday, June 06, 2005
Access: World War II Memorial
I visited the World War II Memorial for the second time yesterday, with my grandmother, her husband and my dad, and decided it was time to write an accessibility review for it on my Access Guide. So, if you're interested please see World War II Memorial Accessibility. While you're there, check out the rest of my accessibility reviews.
Posted by Jeff at exactly 12:53:00 PM.
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Take Me on a Sea Cruise?
With all of the hoopla surrounding the Supreme Court ruling about "Medical Marijuana," a ruling requiring cruise lines docking in the United States to abide by the ADA is not getting the media coverage it deserves. The ruling is significant, because even though US citizens account for almost two thirds of cruising customers, none of the cruise lines are based in the United States and they argued that the ADA did not apply to them.
Unfortunately, the decision was very close and basically said that Congress did not explicitly include cruise liness in the law. Which is all very interesting considering Congress was very vague in writing the law because they wanted the Supreme Court to make the difficult decisions. So, I wouldn't go making my accessible cruise reservations just yet.
Posted by Jeff at exactly 12:18:00 PM.
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Sunday, June 05, 2005
Welcome Daily News Readers
My little corner of the blogosphere (first mention of that word on this blog) got a very brief mention in today's edition of the New York Daily News. In her "Blog On!" column, Dawn Eden writes about Diaries of the disabled and introduces blogs by people with disabilities to the mainstream.I was somewhat surprised that my blog was mentioned as being about advocacy, but in a way I guess it really is. However, you will find me commenting on just about anything, even though I have more recently begun exploring the issues surrounding disability. Even thinking about what exactly "advocacy" is. I've been trying to think of something prolific to write, but still trying to figure out what I believe it is. If I figure it out, I will let you know. Anyway, I wanted to welcome visitors from the Daily News to my blog. I hope you enjoy what you find and will consider checking in once in a while. While you're here I would like to invite you to check out my web site, JeffSpace: The Webpage (also, via the menu at the top of the left-hand column), and find out more about me.
Posted by Jeff at exactly 11:32:00 AM.
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