The United States has seen several civil rights movements. We are now aware of the need for equal rights for people of different races, sexes, sexual orientation, and people with visible disabilities. The struggles of these groups continue, but their efforts to raise awareness, change attitudes and change laws have made steady progress, improving the quality of life and increasing opportunities for many people. I am optimistic that our society is evolving toward a more accepting one, that allows for more understanding and equality.
There is yet another civil and human rights movement in its infancy that demands our attention. People with chronic illnesses have been denied equal access to healthcare, employment, and education. Many people struggle to pay their medical expenses, and have faced discrimination within the medical community (where we would least expect it). Some have lost their jobs as a result of their illnesses. Too often, schools have resisted providing accommodations for children with chronic illnesses, despite federal laws covering students under the Americans with Disabilities Act. Even though their illnesses can often pose challenges, many can be productive at work and at school, if offered some flexibility and accommodations..
What are chronic illnesses? A few examples from a much more extensive list include: Crohn’s Disease, migraines, sickle-cell anemia, diabetes, AIDS, rheumatoid arthritis, primary sclerosing cholangitis, epilepsy, chronic fatigue syndrome, asthma, multiple sclerosis, and heart disease. What they have in common is that there is often no cure for them, and they usually last a lifetime. Though some diseases shorten people’s life spans, modern treatments have allowed people with many chronic conditions to live long lives. Chronic illnesses can go into remission or flare up, but they don’t go away. The term “invisible illnesses” has been used to describe their nature, because their symptoms are not always visible to others.
The mission of Chronic Action is to provide information and to host a discussion forum about the rights of people with chronic illnesses. As the site develops, it will include the following topics:
1. Information about people with chronic illnesses and the barriers they face.
2. Information on the current laws and rights relating to chronic illnesses, and explanations on how to navigate through schools, workplaces, and healthcare systems.
3. An invitation to people with chronic illnesses, teachers, employers, healthcare providers, and anyone else with an opinion on the matter, to post their stories and to discuss ways we can work toward more understanding and equality.
4. A list of actions we can take together to improve the civil and human rights of people with chronic illnesses.