Finding Inspiration After the Loss of an Advocate

7 comments

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.

 

A photo of Jennifer with Pearl Jam.

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?

7 comments on “Finding Inspiration After the Loss of an Advocate”

  1. Jennifer helped me with my disability insurance when I was pregnant with my son and on medical leave due to active Crohn’s Disease. That was almost 8 years ago. Since her help, I have been a supporter of her organization and am honored to be able to have called her my friend. She honestly was the most selfless person I have ever met and I respected, appreciated and am blessed to have had her in my life, even if it was for a short time. I think doing a blog for moms that have a chronic illness and challenges would be a fantastic idea. My journey has been a challenge that’s for sure and I think that sharing our stories would be beneficial to moms that come looking for support.

  2. Yes, this is a GREAT idea. I have a mama friend who suffers from severe fibromyalgia ~ so much so that she had to stop homeschooling. I think there are more women out there like this than we know. Love to you, you beautiful Earth Angel!

    (and btw, I’m BUMMED I’m missed Pearl Jam in Hartford! I will NEVER let that happen again!)

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