Before I was diagnosed with breast cancer I was an avid advocate for people with intellectual and developmental disabilities. I would often encourage individuals and families to share their personal stories to help fight for funding and to help create a more inclusive community for individuals with I/DD.
When we started Community Navigators I had no idea that just months later I would start a new chapter in my life -- my battle with breast cancer. When I was diagnosed in 2016, I didn't yet connect breast cancer with my advocacy for people with I/DD -- until my double mastectomy. In the hospital after my surgery, I heard a young woman screaming down the hall. Later I would realize those screams came from a woman with I/DD who had very little understanding of what was happening to her body.
Months later I had the opportunity to meet many breast cancer survivors and share with them my experience. I learned we wondered the same thing: Are woman and men with I/DD being overlooked when it comes to breast cancer? Are health professionals only treating the cancer and not offering the services of advocates who understand both I/DD and breast cancer? After living through several painful procedures, treatments and so on, it is a lot for anyone to process.
Early this summer Community Navigators received a grant from the thirty three foundation to research those questions. This survey is our first step and if there is a need, we look forward to becoming a resource to assist people with I/DD who might need to access preventative care or advocacy throughout their journey.
I am a strong believer in the saying “Nothing About Us Without Us.” Don't make any decisions about people with I/DD without their input. Unfortunately, with a cancer diagnosis comes a barrage of doctors' appointments, tests and more tests, and many confusing conversations. The first few weeks after my diagnosis were jam-packed with appointments, and it was hard for me to understand and process what I was going through. Individuals with I/DD have learning abilities that are very different from person to person. Some people with I/DD might process things through talking, while others might not. The ways in which people with I/DD process and deal with cancer are part of what we hope to learn in this sturdy, to better help medical personnel understand this special population of patients.
Community Navigators hopes to one day be a support system for and give a voice to people with I/DD who also have cancer.