As editor for Crohnology, my job requires a lot of time following social media about IBD. I often see questions about what laws cover people with the disease, and whether and how those laws protect us. As a public service (to those of us in the U.S.), I want to recommend a book that answers many of those questions: Know Your Rights: A Handbook for Patients With Chronic Illness.
This is not an official endorsement from Crohnology, but speaking only for myself: this book has been a huge help. I used it a lot while I was in graduate school, pre-2009, when the laws concerning people with chronic illness were pretty fuzzy. The original edition untangled that mess in a way that was easy to understand for a non-lawyer.
Fortunately, in 2009 the ADA Amendments Act took effect, which made the law for people with chronic illnesses like IBD much clearer. The Affordable Care Act also made important changes to the law. Know Your Rights , now in its 5th edition, has since been updated to reflect these changes.
Many people with IBD don’t realize that the law protects them from discrimination, and schools and employers often try to pretend otherwise. Know Your Rights will help you understand those laws and how they affect your life: do I count as disabled? What should my school do to help me? When should I tell an employer about my disease? What if it comes up in a job interview? What counts as ‘reasonable accommodation’? How much sick leave can I take?
I keep seeing these questions online, but grew tired of adding my two cents. Since almost everything I know is from my copy of Know Your Rights, now I just recommend the book. Apart from state laws – which can can vary somewhat, but do not trump Federal law – the book is the best resource for answering these questions. Now I just post a link to the book.
The original edition of Know Your Rights was written by Jennifer Jaff, a lawyer with Crohn’s Disease who founded a non-profit called Advocacy for Patients with Chronic Illness. Jaff was a defender of people with chronic illness; she helped thousands of patients with legal advice and advocacy, and also worked in Washington to help pass laws on their behalf. When she died in 2012 – from complications of Crohn’s – her organization was renamed the Jennifer Jaff Center.
Photo “Statue of Justice – The Old Bailey” from Flickr user Ronnie MacDonald by CC license.