This blog could not be timelier with all that is going on in our nation. I hope that as family and friends of Gay that you recognize she, I, and my parents benefited from Diversity, Equity, and Inclusion (DEI) efforts and that this current administration (President, House, Senate, and even the courts) are beginning to take apart everything that our family has fought for on behalf of people who identify as mentally and physically disabled. It makes me deeply sad, and I am frustrated with the ignorance (at best) for how this will affect the everyday lives of people. And I will say, while I miss my sister every day, I am relieved that I no longer must worry about what will happen to her when I leave this world. At this point at time, I am not convinced that some people who are dear to me, who I love and always will, would fight for what she needed at the political and governmental level to protect her. And prepare yourself, the things I write in this blog will be hard to hear or may remind you of your own personal trauma.
What you have heard in the blogs to date are the ways in which my parents fought for Gay’s access to education and support systems to ensure she could thrive as a human being. Even some of the most dedicated and kind teachers, education administrators, and businesses were not yet doing the things necessary to truly support the rights and needs of people with mental and physical disabilities (see article, Earning a Gold Star with Gay getting off the public bus). It was not until the following two acts were ratified by the federal government that these activities began to be taken seriously through: 1) educational training at universities; 2) policies, practices, and procedures in school systems; and 3) the courts holding businesses/government building owners accountable to become accessible to all people.
The 1986 reauthorization (Public Law 99-457) addressed early intervention and mandated that individual states provide services to families of children born with disabilities from the time they are born. Previously, these services were not available until a child reached the age of three.
The 1990 reauthorization (Public Law 110-476) changed the law’s name from EHA to the Individuals with Disabilities Education Act, or IDEA. It also added traumatic brain injury and autism as new disability categories. Additionally, Congress mandated that as a part of a student’s individualized education program (IEP), an individual transition plan (ITP) must be developed to help the student transition to post-secondary life.
Between 1987-1999 Gay and I both entered adulthood. Gay experienced a decade between ages 21 and 33 and I experienced that same decade ages 18 and 30. As my mom said recently, this is when things got hard, adulthood! (Or you could reference the well-known phrase “adulting is hard”). Among my friends who are raising and advocating for people with different mental and physical abilities, we often talk about the challenges of trying to support our adult family members once the school programs for children and young adults are no longer available them.
As a young adult, college was freeing for me. For the first time I could shower whenever I wanted to (not based on whether Gay would be woken up or be frustrated), I could cut my food without fear of silverware being thrown across the table at me and I could stay up late with friends talking until we were too tired to speak. I loved books and studying and had no trouble continuing the study habits I had developed in high school as I faced the academic challenges of succeeding in courses graded on curves based on how the entire class performed. While I did not maintain a 4.0 average due to challenging chemistry, math, statistics and writing courses, I did well and learned so much about our nation and the world. I enjoyed my classes in my psychology major (neuropsychology was my favorite) and astronomy, plate tectonics, 21st century wars, criminal justice, racism & feminism, geography, and art history. These courses made me more aware of the world and my own privilege navigating that world as a middle class, white women whose outward appearance was aligned with how she experienced her gender internally.
During that time, I also learned outside the classroom through volunteering on the children’s cancer ward at UMICH hospital and on the sexual assault crisis response line carrying a pager to be there for people (mostly women identified individuals) who were survivors of rape, were being stalked, or were trying to leave violent partners. As a resident advisor for over 50 women for two years, then for the TRIO bridge program for low income, first generation and/or disabled students getting an early start at UMICH, and finally for the red shirted first year football players, I learned so much about the varying needs and experiences of students from all different backgrounds.
When I graduated with the University of Michigan, I was dating a man I would later marry, who identified as African American. We were together for a little over 5 years and during that time I became intimately aware of the daily paper cuts of racism that most people of racialized identities experience. We would be taunted when walking down the sidewalk holding hands, our families had varied reactions to our relationship, and we were denied housing as we search for apartments together. While all of this was happening, I had entered a master’s degree program for college student counseling at Eastern Michigan University and began working in Stockwell residence hall where I had lived during my undergraduate years. I was developing a vocational passion for supporting students on their own academic journeys through college and creating equitable, welcoming environments within which they could navigate challenges and make their way to graduation.
As these academic and lived experiences shaped my identity, I also developed a constant thread of anxiety that would stay with me until Gay’s departure from this world in 2020. She had to rely on other people besides my parents and me, who often had their own interests or ideas of who she should be, and she could be persuaded or influenced easily. Having learned about and experienced the darker side of human-beings as I navigated college and life, I became genuinely concerned for her well-being should something happen to my parents or to me.
While I transitioned to college and a future career as a university leader and administrator, my parents began preparing for their retirement and the next phase of Gay’s life. They had structured a life for her in our family home that met her needs, and that would be difficult to achieve outside our home. As I was graduating from college, my parents bought a piece of property in Michigan’s upper peninsula with the hopes that someday they could retire there and support Gay at the same time. They often took her with them up North for visits and engaged Lutheran Social Services as well as the local Mental and Community Health department to find suitable living arrangement for Gay for the future. All these services are currently under threat of being cut or diminished.
In the meantime, Gay was in her final years at the Monroe Intermediate School, graduating from there at 26 years old, a year after I graduated from college. During that time, my parents took a rare trip by themselves, traveling to Europe for the 25th wedding anniversary. Since I was in college, other people stayed with Gay, but I did care for her for a couple of days, and I remember that it felt good to know I could support her and my parents.
For the other things my parents were dealing with and negotiating on Gay’s behalf, I felt much more removed and unsure of how to best support my family other than to listen and be a sounding board. In 1990, right as the reauthorization act for disability rights went into effect and individual transition plan (ITP) began to be required to help the students with disabilities to transition to post-secondary life, Gay was accepted into a home in Monroe that housed developmental disable adults. This was one of the homes my mom had helped to build. It did not go well. While many people with disabilities benefited from the services there and continue to benefit from them today through the generosity of donors, it was not well designed for someone with Gay’s complex set of abilities and needs.
The home in Monroe housed multiple adults of different genders with double rooms, and shared living and dining space. One of the biggest challenges for Gay was having a roommate. Because the way her neurodivergent brain functioned, Gay was extremely sensitive to light and sound. Her room at home had to be dark, even the small light on the DVD player would keep her awake all night. In addition, when it came time for sleep either, Gay had to be in a room far enough away not to hear voices or sounds or the rest of us had to shut down our lives (TV, talking, banging or clanging in the kitchen or bathroom) during the 12 hours of sleep Gay needed at night to function the next day. Gay’s roommate in the Monroe home watched TV, in the room until late at night and the other housemates, often because of their own differing abilities, were not always quiet at the times Gay was sleeping. Because men and women could interact of their own free will in that home, the staff also began discussing birth control for Gay which raised serious concerns regarding her ability to consent to sexual activity or even enjoy sexual intercourse because of her physical disabilities. In addition, the use of condoms was not being encouraged, raising questions of discrimination and differential treatment of adult responsibilities in the home.
Added to that fundamental challenge for Gay to get sleep, rest, and have her body respected was a behavioral system in the home that was punitive. It required residents to be on their best behavior to earn the right to leave the home and go out in the community, go for a walk, or other fun things. Deprived of sleep and in an unfamiliar environment Gay could not navigate easily because of her lack of verbal skills, Gay was easily irritated, threw tantrums at times, and lost privileges. By the end of the first few weeks, as staff member at the home called my parents and suggested that they bring Gay home, she was not doing well. As you can imagine, making that decision was devastating for my parents because they had worked so hard to build places for adults with disabilities and now their own daughter could not benefit from that effort.
And as Gay shifted back to my parents’ home and was no longer able to attend the ISD school during the day, the challenge of Gay’s care would consume our lives as a family for the next 3 decades. It began with trying to find things for Gay to be involved in to keep her active mind and social personality engaged while providing time for my mom to take care of basic things like getting groceries, cleaning the house, running errands, and her own needs for adult time and social activity. Government sponsored programs provided opportunities for Gay to go to what was called “workshop” where adults with disabilities would paint stakes, make clips, or put spray cans together for various area companies. The workshops provided Gay with friends and social activities but also presented new problems, largely because they were not funded properly.
Understaffing and improperly trained staff did not understand (and on occasion did not want to deal with) Gay’s physical disabilities. She needed assistance when using the bathroom, at least every two hours and you had to just take her because she may not be able to feel that she needed go. On more than one occasion, Gay ended up with a fellow male client taking her to the bathroom because no one else was paying attention. It was until he became ill, and Gay started wetting frequently that anyone realized he had been the one in the bathroom assisting her. On another occasion, Gay was trying to show the staff her bra was not properly in place by pulling up her shirt to show them, since she could not verbalize what was wrong, and the staff then wanted to send her to a sexual health training program in Detroit. Without my parents’ advocacy, Gay was addressed through others’ perceptions and lenses which were not in alignment with what she was asking for or needed.
As another example, Gay would ride public transportation to community or working centers which was a great benefit to the community and a critical necessity for adults with disabilities. But it was challenging for someone who could not speak for herself. One night, Gay was over an hour late coming home and my parents (this was before cell phones) were desperately trying to find out why. As they pursued a complaint against the man that brought her home late, they discovered he had been let go from a previous job for being inappropriate with the women clients on his bus. Whenever Gay was in the care of others, my parents had to remain hypervigilant to ensure her safety. And yet they needed support, and they wanted to set up systems of navigating life for Gay should something ever happen to them.
This included hiring people to come into their home to help take care of Gay and give my parents physical and mental breaks from attending to Gay’s constant needs. She could never be left alone, required toileting support every two hours, needed to be cooked for and monitored while eating, given her medications, taken to her doctor’s appointments, bathed and with someone had to be available at night when she slept should she wake up and need anything. Finding people to trust in their home and trust with their daughter was not easy, especially since, while the government provided funding for staffing, the hourly wage was low and not life sustaining for caregivers. (That is ever more the case today and will get worse with proposed cuts in federal government funding through Medicare and Medicaid). On one occasion they had a staff member who would show up intoxicated. On another Gay came home purple from heat exhaustion having been left in her van in the hot sun, while a caregiver engaged in sex work at a stranger’s home.
My parents were also allotted hours, the equivalent of one weekend a month, for “respite” care in a local group home so they could take a vacation, go to a movie, or engage in other social activities or house projects that they could not engage in when Gay was home. And while they needed that break, there was always a price to pay because Gay often did not sleep well or was not cared for properly while in the home.
I experienced this firsthand when Steve Martin (my fiancé at the time) came up from Maryland to help my parents move Gay to the Upper Peninsula with them in 1999. They had to leave her in respite care for a few days while they drove up to get settled in their new house, lovingly called Winterhawke, built to be accessible to Gay. When Steve and I picked Gay up, it as a cool fall day and she was in a soaking wet sweatshirt. The staff told us she had vomited on it, so they had soaked it water to clean it up AND put it right back on her. Steve and I took Gay to the local McDonald’s, and I took her in the bathroom, wiped her down and put a new set of clothes on her immediately while she kissed me and thanked me.
And so began the next 15 years of our lives, Gay up North with my parents living in her own apartment (more on how that came to be in the next blog) and me beginning a life in Maryland with a new partner and family, a new job, and many miles between me and my sister. While we both faced challenges, this time would be the most difficult and rewarding in Gay’s life and my parents and I were deeply intwined in that journey.
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