Disability Conference 

The United Nations held the Second Ad Hoc Committee for International Disability Rights in New York, NY June 15-29.  As your former editor, I was privileged to be chosen as one of four disabled persons to do the Daily Summaries for the UN delegates, governments and online access for non-governmental organizations such as our national groups with CFIDS.  Our summaries are posted online at our sponsoring organization's website, the Landmine Survivors' Network, http://www.rightsforall.org .  Partnering with a blind professor from India, a person with cerebral palsy who works with disability issues at the Department of Defense, and another law school student, we were all appropriately accommodated for our disabilities, and all expenses paid for, to enable us to participate on this limited basis.  It was a wonderful environment to have been a part of - a variety of nations, a variety of languages, and a variety of suffering, and disabled enabling one another to gain consensus on issues facing us as a disability community worldwide.

 I appreciate your thoughts and prayers.  Even with the accommodation, it was very touch and go as to whether my health would hold up enough to allow me to participate for the two weeks, even with accommodations.  The sensory overload was enormous from the first day, and necessitated doubling up on Keppra, a non-clonic seizure medication, as well as changing all the light bulbs in the hotel room from fluorescent to regular, having a non-smoking room with no air freshener, no television, typing on my laptop only with sunglasses on in a darkened room, taxis to destinations, and only being at the UN for 1-2 hours in the mornings.  It was exciting, however, to be seated at the front of the assembled nations, beside the Chairman and Special Rapporteur.  It was exciting to meet fellow PWD (persons with disabilities) and heads of governmental disability organizations from Uganda, South Korea, the Philippines, New Zealand, India, and Jordan, and had the opportunity to attend a reception with Queen Noor of Jordan, patrons of Landmine.  The sensory overload and CFIDS symptoms didn't allow me to attend the reception, but I did get to contribute in a small way, I hope, to world events as I spoke with legal counsel from Canada also attending a UN Meeting on Rebuilding Iraq - he was to be helping build the legal structure of the country. I told him my purpose for being there, and suggested they incorporate disability issues, ie. disability from war and chemical injury, into the rebuilding as a way to truly gain good will with countries.  He was very interested, and I hope he conveyed the message on behalf of PWDs.        

I was however, disappointed in our nation's position of non-support of the U. S. need for full support of an international disability convention based on human rights, similar to the Geneva Convention, etc.  Their position was something like, "The US doesn't need to sign on because we are doing fine on disability issues (don't laugh), but we will (patronizingly) assist all of the other nations with advice."  I was saddened to hear, during my conversation with two disability persons from the World Bank, and the International Council on Disability, that the White House and the National Security Council were responsible for this decision.  Please contact your Congressmen at http://www.congress.gov to request that we engage in full participation in next year's convention.  Disability needs should be a humane need all ages and nationalities could gather around; as the delegate from Uganda said to me - everyone will be disabled at one time or another in life, whether by firth, life or old age.  I was glad to represent CFIDS/ME?MCS/FMS with my presence there, and informal advocacy, but I would like to see our national CFIDS patient groups become certified before next year to be full non-governmental organization (NGO) participants, (details available at the UN website).  This is an unprecedented opportunity for us to have a voice in an arena where usually only governments have authority.  I was humbled to be there in any capacity representing by my presence and my voice, our community of wonderful PWCs.  Thanks again for your prayers, and to God for making this possible, even in the midst of serious health issues of my own.  You are a great group to have as a disability family.  And special Thanks to my mother Mary for compiling our newsletter.