Connie joined Joshin in May 2022 and serves as our Customer Support Manager. She is part of a variety of exciting things with Joshin, including supervising our Advocates, who are the first points of contact and personal guides to Joshin’s supports and resources for members. In her role, she also recruits Coaches, constantly investigates how to better support users, and strategizes ways to eliminate barriers Joshin users face. Connie also oversees our employer partnership relationships to identify ways to maximize Joshin’s impact for their employees with disability and neurodivergence, their leaders, and teams.
Similar to Melanie and Melissa, Joshin’s co-founders, I had a sister, Alex, who died with multiple disabilities that motivated me to figure out a way, one day, for how I could pay tribute to her life and honor her legacy. At the time Alex died, I was a sophomore in college, further along in my degree program and frankly unsure of my career options for disability advocacy beyond teaching Special Education or Lifeskills. I knew I didn’t want to work in a school setting, but I also knew how much my sister’s teachers meant to her; they were some of the last people in the hospital room before she died and people that had been in her life for over a decade and from one school to another. I felt a sense of guilt for awhile, including into my young adult years and post-graduate years, questioning if volunteer work or non-profit work was the only way to put my grief and passion into action.
For nearly 5 years after she passed, I did get involved in some non-profit and volunteer work for disabilities. These were great opportunities but continued to leave me frustrated, like the support I provided would just never be enough. Families and people kept experiencing barriers to living their full lives and I grew frustrated and like there was no optimal solution.
The journey to unlearning really happened in the last 4 years. I was in a role after college which was, on paper, absolutely incredible, but it just was not giving me the purpose I needed. I felt burnt out and not able to dedicate my full self to volunteer work outside working hours for areas I really cared about. I realized that I needed to pivot my career to disability inclusion entirely. How I was going to do it was to be determined, though, in my mind, the only way to do this was to set a goal of starting a non-profit for disabilities, because that is the only way to have purpose in work, right? It was at this point that I applied to graduate school to get my Masters in Business Administration (MBA) and Masters in Social Work (MSW) with a variety of internships focusing on disability, including therapy at a government-funded autism and intellectual and developmental disability (IDD) clinic, employment services and job coaching at a school for autism, case management at a stroke and accident trauma rehabilitation hospital and in a community living environment with disabilities of all kinds. I explored several environments, because I learned just how many different areas touch disabilities beyond the classroom.
During the last 4 years, my perception of disability totally shifted. I realized that I had the definition of disability all wrong for a long time. As I engaged in self-reflection, I realized that in my volunteer work, I was seeking out organizations that worked with people with apparent disabilities, not challenging the status quo and realizing that a lot of non-profit organizations did not have the proper disability representation on their staff or board members, only elevating the points-of-view of parents or family members to disability, helping professionals, or licensed practitioners, not people with disabilities themselves working for people with disabilities not working with and empowering people with disabilities.
Once I began following disability activists like Judy Heumann, Emily Ladau, Annie Segarra, Alice Wong, Andraea LaVant, Keah Brown, Julian Gavino, and more, I quickly realized that I needed to stay humble. When I started conducting research for graduate school and really learning from people with disabilities directly, I realized many of the systems I participated in were not prioritizing the disability community and their “nothing about us without us” mantra. In those 4 years, I did not work with or really know people who were loud and proud about their disabilities (apparent or non-apparent). I learned that people with non-apparent disabilities are equally in need of support too and, if anything, are often not believed to have a disability diagnosis or hide it for so long until it isn’t sustainable. People like me.
I have epilepsy, and I was diagnosed in high school. My sister had it too; I like to think our shared diagnoses keep us linked together and motivates me more than ever to continue to honor our experiences together. I didn’t own my disability diagnosis and refused to disclose for years. I felt shame; have you seen how horror movies have depicted epilepsy? I didn’t want people to think I was possessed! When I would tell people about my epilepsy, they would respond with something like “oh my gosh! That’s so scary!” which really helped my self-esteem. In my people-pleasing phase, I never questioned why my diagnosis was scary to people and never challenged their perceptions. I just suppressed my diagnosis and hid it from as many people as possible for as long as possible, until the occasional seizure would reveal itself.
I have other close family members with Type 1 diabetes, Type 2 diabetes, cancer, autism, ADHD, anxiety, hard of hearing, and lupus. These are disability diagnoses too! Realizing how prevalent disability is (nearly 1 out of 4 people), the diagnoses disability encompasses, and the ways in which disability is simply defined by the Americans with Disabilities Act (ADA) as “a physical or mental impairment that substantially limits one or more major life activity” really helped me to normalize disability in my own life and in the lives of others, who daily or even moment-to-moment have to make decisions beyond their non-disabled peers to care for themselves due to their disability.
When looking for a role outside of graduate school, I really craved the right environment that really aligned with my values and prioritized accurate representation of the disability community. I learned that non-profit organizations, while doing meaningful work, are often too under-resourced to do innovative work. I also learned that doing consultative work, which I have experience in, is valuable, but there is unfortunately gatekeeping that restricts implementation of transformative ideas. Disability inclusion should not only be modeled and implemented from the top down, it should also be managed and supported at all levels along the way.
I learned more about innovative and socially impactful organizations, but few of which included disability. Joshin fills that gap and aims to be that comprehensive support system for organizations, including employees, family members, and their people leaders and allies. People can come to Joshin and gain resources that are so often word-of-mouth or difficult to access or comprehend. I am so proud to work for an organization that is really trying to reduce barriers to support for disability and neurodivergence by providing members with their needs, no matter what the disability may be.
If you are similar to me, having grappled with your intentions around why you got into disability work in the first place, say hello. For years, I was stubborn and not willing to unlearn and felt like my intentions were in the right place initially, but self-assessment along with listening to and elevating the voices of disabled people is critical on the journey in disability inclusion and advocacy, whether for yourself or with others who have disabilities.
Each person with a disability is a person with a disability; I will never pretend I understand the experiences of all people because of my own experience. I don’t understand every person with epilepsy because I have it too, but I will continue to press for reducing barriers to disability inclusion and am so honored to be on the journey with you at Joshin.