If you've ever been frustrated by the lack of appreciation of the role of invisible chronic illness in functional disability, please vote

Interagency Committee on Disability Research (ICDR) Utilizing Online Technology to Determine New Research Directions

An ICIE reader has notified me about this ICDR week long period to vote on shaping disability agendas. She has submitted a comment to expand disability to appreciate the role of invisible chronic illness in functional disability.

Please help encourage awareness of invisible chronic illness by voting to prioritize this research issue.

For more information and complete instructions visit the Web site: www.icdr.us/stakeholders and follow the registration and voting procedures.

A couple of hints:

After you register go to http://www.icdr.us/stakeholders/comments.aspx.

Then go to "Topic 6: Other Critical Research Issues"

The fourth comment down is this

"Presently, disability encompasses a heterogeneous population, and this variability in cause and nature of impairment are weakly represented within the disability dialogue and literature. Traditionally and by popular understanding, disability evokes the image of a congenital or accident-based disorder involving a visible impairment of the body such as a missing appendage or sensory faculty. However, increasingly a significant population that are experiencing disability are doing so via invisible causes such as the wide array of chronic illnesses that are rising within our population. Most noteably, there is a population increase in a wide array of auto-immune disorders that are challenging to diagnose, poorly understood, and given little visibility (See “The Autoimmune Epidemic” by Donna Jackson Nakazawa). In order for disability research to be a true reflection of the subpopulation that is currently prevented from functioning within work and home, and which will thus become a major social cost to attend to late in the game, we must create a stronger awareness of the role of invisible chronic illness as it exists and is rising within our population."

4/21/2009 1:54:18 PM

The sixth comment down is this:

"Ever increasing numbers of US citizens are affected by serious chronic illness. Many are seeking postsecondary education so as to increase the chance of their employability. The proportion of children and adolescents who face activity limitations for long-term health reasons has increased from 1.8% in 1960 to more than 7% in 2004. Others, both young adults and older adults returning to school, have developed illnesses such as diabetes, multiple sclerosis, chronic fatigue syndrome, Gulf War illness, and other conditions. Because there is little understanding of their conditions and of the reasonable accommodations that might enable them to succeed in college, many do not graduate. However, without a degree, this group, which typically cannot do manual labor, will find itself on welfare. Research is desperately needed to determine the numbers of current and aspiring postsecondary students with serious chronic illness, the types of illnesses, the extent and types of disability experienced, and the accommodations that can help them to be successful"

4/16/2009 1:31:56 PM Lynn Royster Chronic Illness Initiative, DePaul University

You can vote for each comment several times.

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