Living on the fringes of society as a person with a disability

Today is Blog Action Day and the theme is inequality.

I have devoted a good chunk of my professional life to advocacy for disabled people. I’ve submitted recommendations for revisions of the IDEA (Individuals with Disabilities in Education Act) in the US, served as co-chair of the Consortium for People with Disabilities Prevention Task Force, co-lead a coalition to save a $2.5 million program for children with disabilities, and spoken publicly at San Francisco City Hall about the need for better services for people with disabilities and aging adults.

My heart was fully engaged in all of those professional activities. I know firsthand what it is like to be a disabled person.

I am dismayed by the lack of progress on disability issues in the last decade. And it is not just in the US, my home country, that has failed in bringing about meaningful progress for disabled people.

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Water – source of life

Blog Action Day 2010 is today!!

I remember thirst well. It is hard to forget something that gripped me for weeks of my life. During three hospitalizations for severe Crohn’s colitis flares, the doctors gave me orders not to drink or eat anything for several weeks. They were worried that even a small bit of food or water could cause my severely inflamed colon to burst, which would have been life-threatening. Nurses had hooked me up to bags filled with intravenous fluids to help me avoid dehydration. But these fluids never quenched my thirst. My disease was severe and I always felt dehydrated during those hospitalizations. If I was lucky, the doctors had also allowed me to receive parenteral nutrition, which was a nutrient mix delivered to my body intravenously. Usually, the doctors allowed me to receive parenteral nutrition after one week of not eating anything. The only water I was allowed to drink was a tiny sip with my medicines. More

Blog Action Day 2010

Determined to Heal will be participating in Blog Action Day 2010, which is October 15, 2010. The theme this year is “water.” The blog post will be about water and its importance in health and well-being for all people throughout the world.

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