Finding Inspiration After the Loss of an Advocate
This morning I found out that a colleague of mine passed away. Jennifer Jaff was/is a well-known advocate in Connecticut and started her own organization called Advocacy for Patients With Chronic Illnesses (if you went to the most recent Pearl Jam concert in CT like I did, you might have seen her honored on stage for her work). Her death is sad for so many of us because she was the most fierce, dedicated and passionate advocate for people with chronic illnesses I’ve ever had the pleasure to meet.
I had already been thinking lately about how to do more advocacy on behalf of women with disabilities. My younger sister has struggled with interstitial cystitis since age 14, has battled severe endometriosis and has had several surgeries. I have other family members that have struggled with disabilities too but for them, their struggles are more mental than physical (this holds true for me as well).
Jennifer’s passing feels like a call to action for me in many ways. Here on CTWorkingMoms.com’s, it’s made me realize that we are missing a big voice. I keep thinking to myself, how do moms with disabilities or chronic conditions feel about parenting? When I say disability I’m using that term broadly to include women dealing with mental, emotional, and/or physical limitations or struggles. Often times these kinds of struggles/limitations are invisible to the eye. I myself, struggle with chronic anxiety that does, at times, affect my ability to parent my child the way that I want to.
If you’re a mom with Crohn’s Disease or a digestive disorder, how does that affect how you spend time with your kids? If you need to be near a bathroom more often than not, how do you plan family trips? If you are a parent with a chronic disease that causes you intense pain, how to you find the time you need to care for yourself while also giving to your family? If you’re a mom in a wheel chair how does that affect how you bond and play with your kids? What are the unique challenges that this demographic faces and what kind of advocacy can we provide?
I’m going to put some effort into locating some CT-based working moms that are willing to blog here on the site about their struggles managing both their personal disability/illness and the needs of their children/families.
We must do better in giving women with disabilities a voice. They should never feel that their unique needs and concerns are invisible.
What do you think? Would you like to see us sign on one or two new writers to help start bringing a voice to working moms with their own special needs?