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• HANDICAPPING THE POLITICS OF DISABILITY (c) Carrie Devorah

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HANDICAPPING THE POLITICS OF DISABILITY (c) Carrie Devorah:
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He was direct, to the point and adamant the subject of the Senate hearing on ratifying the Convention of the ADA was a NO. Who could argue with him? Question is WHY wasn’t he the witness put forth for Senator Durbin to challenge. The HE is Charles Krauthammer, answering with conviction, authority and first hand understanding of the hearing theme. Charles has been wheelchair bound since medical school. A chance walk by a pool. A spontaneous dive into a pool. Charles says he knew at impact his life, if he would make it alive out of the pool, was changed.

It was.

Charles chronicles in his book “Things That Matter” his journey from being a liberal Med School student to becoming a

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Welcome to the world of Conservative politics, better known these days it seems for shooting themselves in the foot when it comes to Theater of Politics, the Democrats have nailed. Showtime. And all Conservatives have to show for this hearing is the dismal failure of Michael Farris failing to cite each and every of his signators on to the testimony and letter Farris was pushed center to front.

I happened to be at Politics and Prose at the hearing with intent to ask Mr. Krauthammer for a blurb on the value and necessity of Intellectual Property for Disabled People’s ability to be self sufficient in a world technology is robbing of content that can be converted to make people King of their Own Empires. Instead headlines scream Google is topped $1000 a share and Apple, TOR project, Silk Road and BitCoin are threaded through the Emerald Isles, Netherlands to the Caymans and such. How? Not on their brilliance but from sucker feeding off the Bright Ideas and Personages of everyday people like Charles Krauthammer, you and me. What used to be a world of ‘what is mine is mine’ has become a world of ‘what is yours is mine including content, name, ID and commerce.’

And so it was I was near the microphone when Charles gestured to my asking a question. Hadnt planned on it but did. Mr Krauthammer’s answer is memorable, on video, a copy of which I was told would be sent to me by Politics and Prose. Upon receipt, I will post it. I would never think to speak for a man so esteemed and qualified to respond for something I too am qualified to answer for.

Disability. Like people and temperament, it comes in degrees. There were days in the past five years I wished I was not in the limbo between Upright and Rolling. The world is not ADA’d for people with walking disability as I had, have and as people with cerebal palsy, etc have. The ADA ramps? We don’t have the ability to walk the length of the ramps back and forth. The mountain of stairs may take longer. We scope out pain v distance often choosing the Himalayas the stairs in front of us represent. Our voice is lost in hearings, rules, regs and public shaming of unfortunate selecetions of witnesses like Farris.

The adventure of DC is every present talks about politics and America leading the world. Fragmented conversations each in their own unique pod darkens ability to make a better world, faster. Life lessons like Empathy, core to disability, cannot be taught. Empathy for challenges, otherwise and physical, can be earned. Leaving the Capitol after a day of politicking, within seconds, can change to a Call To Action. All it takes is a reason for what Techies call a ‘pivot’- an email, a tweet or a 'did you know?

DC is an oxymoron. Heartless. Often embracing Lords without predicting their game plans for down the road.   

And so it was, just like that, on a Tuesday in Washington. Already past the Smart Card gates, down on the platform. Waiting. Orange train was departing. Waiting for the Blue. Pivot.

Ping.

One look at the email, I was back up the escalator, out the turnstile, up to Street Level   and back in to Capitol Hill. The Ping was notice of an email from Senator Menedez's office. The email to Media was addressed “If you care….” Sad acknowledgement of a staffer seemingly familiar that most Media would not- care that is. Jennifer Garner or Ben Affleck? Staffers would be beating ‘Media’ away from the door. But for the first of two hearings addressing CRPD, the Convention On The Rights of Persons With Disabilities [ www.usicd.org/index.cfm/convention ] Two snappers showed up. And the press table? Less than 5 journos at the table.  I know of one who has disabilities. Me.

I had just left a meeting with Congressman Jim Langevin's staff when Senator Menendez’s email found me down in the Metro, a follow up to a conversation I had with Congressman Langevin in the flyway between Cannon and Longworth. Langevin is wheelchair bound from an accident when he was a teen. My meeting with Langevin’s staff was to  address Disability, enforcing the economic impact of IP stolen from or in the name benefiting the Disabled. In the case of the latter, a witness at another hearing stated his model based on Napster and the Blind was his first ever profitable business entity in all of his Silicon Valley VC world years.  The increasing  viral  rate of online Intellectual property theft impacts all citizen's abilities to make livings including the Disabled. Owning one’s IP and profiting from it is an Entrepreneur and Small Business person’s dream.  I had thought who better to back a Bill on stopping IP theft by Technology than the man distinctive in his wheelchair wheeling to and from votes, other than Congresswoman Tammy Duckworth a hero of War.

Langevin’s staff didn’t agree, it seemed.

Langevin’s committee assignments are House Armed Services, Strategic Forces, Seapower and Projection Forces, House Permanent Select Committee on Intelligence and intelligence, Emerging Thefts and Capabilities. Langevin’s staff don’t get- Disability isnt a choice for their congressman. It is a fact of his life, mine and the countless others who filled the Hearing Room I made my way over to as I left the Metro.

It was quite by chance I took time to read my emails in the Metro after leaving Cannon Building. I had been warned early on in my illness I am a target. I was told not to pull my iPhone. Over and over again, I am reminded, “you are a target, keep your iphone pocketed.” So I pull out my sketch pad and outrageously orange pen.

Ping. Something said…. Check the ping. I did. Senator Menendez's email had come through. Exhausted. Aching. When I saw the words ‘If you care’, I knew I had no choice. It wasn’t that I cared. I was because I could not ‘not care.’ I saw Senator Mark Warner on his way out. That night Warner celebrated Mccauliffe's. I reminded Warner of his invitation from the 1776 event to meet. I continued Senate side.

Pivot. Welcome to the world of Disability.

The halls were jammed with a world I have known from the day my oldest son was born. A world of people born to climb mountains higher than the Himalayas. My son born with an ulna ray deficiency was recently named one of the Top Forty Under Forty attorneys. I recall the cruel words people said, moreso cruel because I, to this day remain unable to explain ‘why him, why me’ other than ‘sometimes, it happens, no reason.’ When I was first injured and sunk into disability, I told people, not my son, he was my hero. I had never acknowledged to him the label disabled. Different, yes. He was raised to take on the world he did. I had quite the model to look up to.  I could be put back together to look ‘normal.’ Walking five steps was like a 10K. Walking ten steps was a friggin’ marathon for a woman who once was a gym rat, adventurer wearing even league boots until 8-2009. Determination only goes so far.   

Each step is still a mile. Now I belong to a Club I didn’t ask to join- albeit ambulatory. My son taught me ‘normal’ comes from the inside. DC? A world full of able, mobile people who are handicapped inside.  Disability is none of that. Despite harsh realities of disability from choice, such as serving in the military, or by chance, such as wrong place/wrong time, or by lottery of life, the miracle of birth, the crowded hall outside the  Dirksen hearing room was celebralicious.

Congresswoman Duckworth is that new breed of military hero I saw racing the Army Ten Miler, recently run through VA and DC. Blind runners guided by their seeing eye people. Men and women on their runner blades. Men and women partnered wheeling others in racing wheel chairs, recumbent bikes and in some cases large child and adult size strollers. It was a 'glory' moment. Not. For some, it was the 'there but for the grace of God go I' epiphany few get. Their world was not the world of Disability in the Senate room that day. I cant explain it. I can say this. That day ringing a cow bell cheering racers on, calling out to the various military, and others, was empowering. There are days, in disability, inspiration in the streets is a glue that keeps us ‘together.’

Rewrite.

Days out from the Senate hearing as I think back to this Hearing, what comes to mind is yet another moment that will live on in C-span infamy as an opportunity  that escaped Conservatives On The Hill. My mind boggles at Conservative Leadership missing this demographic of Disability. Not one email from Reince Preibus adressing Disablility in all the time I’ve been on his fundraising radar- Immigrants. Check. Healthcare. Check. Disablity? Zip. None. Nada. No surprise then to me that the Pew Center's last stats on the Internet and Disability presented at a Washington Post event, the same morning, dated back to 2010.

Shame on someone.   This is 2013.

The Dems have Disability on lockdown. All one had to do was be at the Hearing with THREE overflow rooms filled with Disabled people of all ages and types and Disabilities. Angels at heart were in attendance- family members, loved ones. The NGOs were present in throes. The personal stories are grueling.  One could not help by smile at the scooters and wheelchairs zipping up and down the halls of Dirksen with logjams over by the elevators, prompting giggles at the thought maybe posting a Speed Limit should be in order.

The Hearing was a circus of sorts  listening  to Senator Dick Durbin rail witness JD Michael P Farris, of the Home School Legal Defense Fund, a proverbial 'new one.' Durbin’s chastising of Farris was a stunner eliciting a visual parody of the 'what hath God Wrought,' brass plaque outside of the old Supreme Court Chamber, on the wall, to read 'What hath GOP wrought?' Or not. The answer to that question lies in the almost 50 conservative pro-life groups co-signed on to the "United Nations CRPD" letter "strongly" asking Senators Corker and Menendez to "oppose US ratification of the UN Convention on the Rights of Persons With Disabilities” who put Farris up as their spokesman. The Conservative plea to not ratify the International convention, left in Farris’ hands, was tragic. The one and only witness that should have been there- Conservatism’s answer to example of a Life Well Lived- Charles Krauthammer- was not. Durbin may have been right to demean Farris. And the GOP. Boxer was right, Farris used that failed day to fundraise. How could the GOP get this conversation so wrong not taking a page from the Democrat play book... think Hollywood, Dahling! Think SHOWTIME!

SHOWTIME it was.

I was stared at when I came to the Hearing, in fact, I was bluntly asked what was I doing there, ambulatory and all with all my apparent faculties around me, or not. I was presumed to be with the MS people. Color coding. Nope, I explained. Matches the purse, the hair and used to match the dog. AND I did belong. The skepticism on their faces didn't deserve explanation I offered since theirs Perview of Disability was perceived to be skin deep. My disability is beneath the skin.

I walk, now. I did not for several years without a cane I crushed on. I counted steps, each enslaving me in a shroud of screaming silence, sucking energy from my essence. There were days my thoughts were so dark, my will to live was even darker. Moments aren’t easy for disability that is not visual like a white cane, a wheel chair, metal struts and stuff, moreso, in an Obamacare reality, dropped from insurance for having cost CFBCBS a lot over the past five years. I explained, albeit living a life with restrictions, I was at the hearing choosing to speak out and stand up for protection of Intellectual property, undervalued for self-sustainability of a non-job Small Business, Entrepreneurial Person, straddling Life Of A Living with that of a Disabled World.

Amazingly, Intellectual Property value and protection isn't adressed by the Disabled Community, as it should be. The reality check for Disabled’s is that without being able to profit  from their own IP, globally, the US ratifying the convention before the Senate hearing is meaningless. What good is having the Treaty ratified to make the world ADA compliant if, without incoming money, income, the Disabled community cannot afford to travel. What good is having  a Travel Destination in the third world countries if the Disabled Community the Convention alleges to be standing for, is being robbed of their ability to provide for themselves by the Search Engines and ISPs, and Tech Entrepreneurs mis-citing Legislation of Title XVII. Not everyone is a Steven Hawking or Charles Krauthammer or actors from the show Glee. Everyone  deserves the chance to become relevant through what they imagine and create, wheels up or down.
 
Borders are blurred for travel and treaties. Borders are being blurred for copyrights, too. I understand disability in an ambulatory sense of the word that provides for ramps too long for me to use when step counting was my mantra or Handicapped parking spots too far away. I will always remember the Australian Journo in a wheelchair in Dubai, colleagues were reaching over to get sound bytes from Saeed Bin Suroor, on race day. Or the hottie in England trying to charm me into staying longer in London. I had asked to cover the Blind Protest against Firecrackers being set off on Guy Fawkes Day. The noise spooked his dog. He was blind. Or was I, in hindsight, choosing to come back to America where one day, I broke.
Senator Kirk spoke as a new member of a Unique Club that chooses its members with unpredicted invitation.   

I listened to Durbin lash out at Farris. I listened to Boxer, Ridge and Thornburgh. I am not sure they get ‘it.’ I took a second to search on line. Infanticide, euthanasia are alive this very day. Farris surely was not eloquent. He wasn’t wrong. All the Treaties in the World will never legislate what people do in a healthy economy let alone in an Internet Connected World teaching people how easy it is to make perceived burdens go away. With no intention to step into the Right To Life conversation, fact is people make that decision every day- of who should live and who should die. The thing about Hitler was he was more blatant about it. He went after those he saw no value in. How do we as a culture ratify seeing value in others.

Disability isnt about politics. Disability is about people. All the ratifications in the world aren’t going to make a difference if Durbin’s disrespect to Farris and Conservatives was the best Durbin chose to put forward attacking Farris’ limitations. Like I said at the beginning. Empathy, it seems, cant or wont be taught. Never Forget aren’t just words in the Holocaust Museum mantra. Take a look inside, upper floors. Murder of the Unfit [ www.ushmm.org/information/...focus/nazi-persecution-of-the-disabled‎ ]

Farris’ wasn’t all wrong. Times change. Far too often, people don’t.   

Joining the Convention is not a Call To Action just for today. Joining the Convention is a Call To Action that is binding for tomorrow. 9-11 is America’s lesson that tomorrow changes on the head of a pin without notice. President Kennedy’s assassination, that of MLK’s, that of the V-Tech shooter, Boston Marathon, Newtown. Joseph Kony’s Invisible Army created by disabling children to teach lessons to others who MIGHT have the thought to escape. Malala, a young woman with Grace beyond her years. That bullet should have disabled her. Unpredicted. More unpredictable is the determination her assailants have to finish the job they did not complete with shot One. Think!!! Ratifying the Convention is signing on to a future no one can predict, not even Google with all its Analytics.

So, there it goes with all the talk about off shoring American ratification. If anyone cares.... I do, disabled, by definition other than wheelchair bound. Yes I walk but with care, and awareness that with every step I take I fight to stand tall, to not collapse under the weight of atrophied muscles fighting to find their old self and, as I put it, do their muscle or body part ‘jobs,’ changing the perception of  how people see accomplishment, trending towards changing the Can't of Disability to the Can Do of Ability for people who are blind, disabled and amazing souls is a global concern. Senator Markey prides that he and cronies got On Ramp on to every mobile device. Closed captioning was in the Telecom Act. That Markey followed with the motivation being opening a new market for the Telecommunications Industry was his shot in the foot. You see, ask the president of the WBU, World Blind Union, to repeat what he said to Washington Lawyers recently when he was up at AU, American University. He said ‘we don’t want charity. We want to be treated like everyone else.’ AND THAT wont happen until the world Disability is removed from conversations. Think Hawking, think Krauthammer. Think Genius that rolls instead of walks in the door.

Congresswoma Ayotte spoke words written in the name and voice of Senator Bob Dole, the rockstar of Honor Flight. Tom Ridge disclosed his Club membership is his hearing aid. Dick Thornburgh professed his membership started with son Peter, seriously brain damaged, was 4 months in age. Thornburgh, speaking with a father’s heart said America would not lose. Thornburgh did not adress if the world he wants his son to have wasn’t. October 10th was the 25th anniversary of the murder of wheelchair bound Leon Klinghoffer on the Italian cruiseliner [www.cruiselawnews.com › Terrorism‎ ]

Local or global, fact is until people embrace a kumbaya for disabled, all the rules in the world are not going to change life for disabled. No matter how many Braille buttons there are on signs or government issued business cards or street lights that scream Don't Walk Don't Walk, until there are more people willing to train alongside blind runners for marathons, dogs prepped for blind buddies, people who wont turn heads away from looking at mongoloid or Elephant Man or CP, people willing to walk up and say ‘hi’ without hesitation, the fact is and remains, unless Able people stop using bathroom stalls intended for disabled, or stop sitting in disabled seats on Metros or stop pushing past disabled to get to the head off the line first, then all the ramps in the world and ratifying the CRPD wont make a hill of beans of a difference to showcase Disability Exceptionalism. 

And we are…. Exceptional especially when it comes to conceiving of Bright Ideas for tomorrow…….. intellect of property... worthy of preserving, protecting and honoring

FIGHT THEFT OF COPYRIGHTS
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AGAINST
IP & ID ABUSE BY
TECHNOLOGY(c)

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WRITE YOUR CONGRESSMAN(c)
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"GET YOUR COPYRIGHT ON!
TELL COPYRIGHT
VIOLATORS OFF!
(c) Carrie Devorah

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ALL INTELLECTUAL PROPERTY STARTS with a Pencil &Paper in 2D(dimension) 
Everything Else about IP(intellectual property) comes down to COMMERCE (c) .
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