1999-2015 Independence and Interdependence

I have been self-interrogating this idea of “independence” that I keep referring to in these blogs. Independence is a western, European, capitalist concept whereas interdependence and the connection between people and their ability to survive comes out of eastern or indigenous thoughts and beliefs. And both concepts were important for Gay and me, being able to take care of yourself, direct your own life and survive and to be part of community and have capacity to give to others. Fundamentally, these are all human rights. The Human Project Foundation provides reflection on this topic here: 

https://www.thehumanprojectfoundation.org/blog/the-i-vs-we-culture-emotional-independence-or-interdependence 

In writing these blogs, I have struggled with dilemmas such as "I can’t speak for Gay and yet I want her story and life to be shared to honor her, and perhaps educate and inspire” or “I want to highlight our similarities as a signal of her strength and perseverance and recognize her differences should not be seen as weaknesses, but strengths that challenge us to see the world differently.” What I hope you hear in this writing is how intertwined we were, that she was my life’s compass, I am who I am because of her, and that we supported and inspired each other. 

During this time (1999-2015), we each developed independence and interdependence relying heavily on our communities for growth and survival. Many of the previous blogs explore these ideas “ME-SELF,” “BABIES, BABIES, BABIES,” and “HOUSE! HOME!! HOMA!!!.” My parents and Gay moved to the Upper Peninsula (UP) of Michigan, and I moved to Maryland.  

What I want to highlight in this blog, are the components required for Gay to be the most “independent” she would ever be, one of the things my parents encouraged and pursued for her. Behind their passion was also advocacy to change “the system,” the communities they lived in, so that Gay could be safe and cared for should her family not be around to speak up on her behalf in the future. What we discovered during this time is that the US/state system is not designed for true independence or interdependence. Without us Gay would not have survived or lived a safe and peaceful life. 

Originally, administrators in the area my parents planned to move to in the UP, thought Gay would thrive in a local group home. This type of environment did not work well for Gay in Monroe, so there was already some trepidation. After my parents visited the group homes available, they were more convinced that Gay would not be able to sleep or function well in those environments. To their delight, the director at the time then offered something that had not been done before, place Gay in her own apartment (the building was supported by the Federal Government – HUD: https://www.hud.gov/helping-americans/public-housing). It meant that someone (employees or family) would have to be with her 24 hours a day.

Through discussion my parents and administrators decided that if Gay could be left alone at night from 9pm – 6am, it would reduce the cost of care and provided the kind of quiet Gay needed to sleep. They worked with a company “Guardian” to set up a camera with an alarm system in the apartment so that Gay could be left alone at night but monitored by 24-hour staff. My parents who could also access the visual of Gay in her room. 

This system worked well in many ways. Gay had her own place, located in an active community with a manager on site during the day, monitored by police and fire, staff and my parents for safety. The town was small, so people came to know Gay and my parents and could observe how Gay’s staff was tending to her safety and needs. Gay’s staff took her to activities, grocery shopping, helped her with her laundry (located on her hallway) and supported her interaction with other people in the building. Truly a balance of independence and interdependence. 

However, that system was built on a fragile structure that is even more fractured with proposed and successful cuts by our recent administration ( https://www.nytimes.com/2026/01/09/us/politics/trump-child-care-funding-freeze.html?unlocked_article_code=1.EFA.y44A.zPu1GV4VxL55&smid=url-share) 

Gay’s life was funded by disability social security payments, SNAP benefits for food, affordable HUD housing, Michigan Community and Behavior Health and her family. As we entered 2010 and the minimum wage for home help staff was not increasing (stagnant at $10/12 per hour), it was becoming more difficult to find trustworthy and skilled staff that could provide for Gay’s health and safety. Gay's “community” was slowly coming unraveled.  

As a family, we had the capacity to continue supporting Gay by letting go of our own dreams (my parents leaving their dream retirement home and friends; Amy leaving her Maryland family and friends of 15 years and a quickly accelerating career trajectory) and moving to an area where we could combine assets and time to ensure her safety and comfort.  

In summary, there were members of Gay’s local and broader community that supported her and amazing, giving people who cared for her in her own home. We want to make sure a few people from the UP of Michigan are recognized for their outstanding support of Gay: Sally Hefer, Beverly Marks, and Sam Harma.

However, as voters and community members we are letting people down every day by not supporting the systems that allow them independence within an interdependent supportive and engaged community. Please read more about how cuts to key programs impact people with disabilities at the link provided. Our family asks you to consider how you vote. Your advocacy and voting for community minded leaders can make all the difference for disabled individuals and communities they live in: https://www.disabilitybelongs.org/2025/10/how-federal-budgets-directly-impact-the-lives-of-disabled-people/.