Meeting at the White House

Wow, what a day. I met with Kareem Dale, Special Assistant to the President for Disability Policy, and Jeffrey Crowley, Senior Advisor on Disability Policy. My "team" was the remarkable Janis Arnold, an Advocacy for Patients Board member and a wonderful social worker and advocate at Boston's Children's Hospital; the thoroughly glorious Wendy Shanker, author of the do-not-miss Are You My Guru? How Medicine, Meditation and Madonna Saved My Life; and the most articulate Jon Reiner, Crohn's patient and author of a forthcoming memoir of his ordeal with his illness.

Our meeting lasted about 40 minutes. During that time, we discussed the special challenges facing people with chronic illnesses, invisible disabilities. There was no question that both Kareem (he said "call me Kareem") and Jeff totally "get it," but our goal was to get them to spend a little time focusing on chronic illness today, and to ask them to include invisible disabilities when they talk about disability policy. We definitely accomplished that goal.

Janis talked about the experience of children who seek accommodations in schools. She gave wonderful examples -- IBD, Celiac, and transplants -- and very beautifully described the challenges these kids face in school, convincing schools to provide accommodations even if their grades are okay, and even if they're in remission, to plan for the inevitable. Wendy talked about her experience in the corporate world and how, when she got sick, she didn't know she had any rights, and felt that it was up to her to leave the corporate environment and make a new professional life for herself. Jon, who was well-aware of the Americans with Disabilities Act when he was in corporate America -- he worked for a time for a nonprofit that specializes in disabilities and the arts -- said that even knowing his rights, he felt he had no choice but to hide his illness as long as he could, and then leave when he couldn't hide it any more. All three were so articulate and persuasive. They clearly got that, with invisible disabilities, the whole human resources machine doesn't kick in like it does for people with visible disabilities, so nobody reaches out to us to tell us what our rights are. And they definitely understood the point that those of us with invisible disabilities have to confront a culture of disbelief -- the whole "but you don't look sick" phenomenon.

We were pleased to hear that the Department of Education is working on guidance and a "dear colleague" letter to schools about how the 2008 amendments to the Americans with Disabilities Act impact the rights of children in school. I was strongly urged to contact the Department of Justice Civil Rights Division if we have any cases we need help on; Kareem said he would tell them about Advocacy for Patients. And if anybody would like to be on the list-serve for disability issue, just send your email address to sfeuerstein@who.epo.gov. Kareem strongly urged us to disseminate that email address so that people can see first-hand what the Obama Administration is doing for people with disabilties.

This was a great day for me personally, and a truly remarkable day for Advocacy for Patients. Indeed, Kareem said he was going to invite us to events and so on, so I expect this is the first of what will be other similar trips. We at Advocacy for Patients owe Janis, Wendy and Jon a great debt of thanks for taking the day, traveling to Washington, and being such great spokespeople for the chronically ill.

They talked about chronic illness in Washington today, and that's a very good thing for the chronically ill. Jennifer