Our Early Years as Sisters 1966-1975
This blog has taken quite a bit of time to come out of my head and heart as I tried to stay centered on my purpose for writing our story. For each blog, I’ll be conducting more research to better understand the context and details about the places and situations my parents are sharing with me. It has even inspired my Mom to contact the Monroe ISD inquiring about any information they still had on file about Gay. I am taking a chronological approach to future blogs and it’s fitting that we just celebrated Gay’s 58th heavenly birthday on January 2nd and my 55th birthday on January 26th. Gay was born in 1966 and I was born in 1969 and those dates are important as these blogs explore the history of ability science, culture, and politics. It is an interesting journey for me to look back at these early years of Gay’s life and mine and to recognize what my parents had to negotiate to meet Gay’s needs and the ways my early years were similar and different.
The setting for this blog is 1966-1975 (the first nine years of Gay’s life and the first 6 of my life). The Civil Rights Act of 1964 passed during this time but did not protect people with disabilities. While there were some acts in the 50s and early 60s that supported training for professionals working with disabled children and the construction of facilities for programs, the first time rights for disabled persons are addressed nationally is through the Rehabilitation Act of 1973. This act prohibited discrimination against persons with disabilities in federally sponsored programs and activities and was written to protect students with disabilities giving them access to learning and support for their academic success.
(from the IDEA website, a great resource for the history of disability acts)
Reading through materials my parents shared with me I learned that in 1968, my grandfather, who was a Coordinator of Special Education in Michigan, wrote to the University of Michigan doctors advocating for a program for Gay. In my grandfather’s letters he talks about how well my Mom was doing with Gay’s development, better than any program from his perspective (and I believe it, she’s amazing!). However, he also posits that having another child on the way would make things much more challenging for my Mom. Grandpa also mentions the programs in Ohio my parents were exploring because the first support my parents received for Gay’s education was in Toledo Ohio where my Dad worked at the GM transmission production plant. My parents moved to Sylvania, Ohio during this time because the Toledo society for crippled children (language of that era), had an Opportunity Kindergarten (a pre-school program) run by Easter Seals. The Libby family had donated an old mansion for the program. It offered physical therapy, speech, and occupational therapy for ½ day. My parents had to pay for the program and unfortunately my Dad’s company GM, went on strike during that time which made it more challenging. My Mom went to work for Easter Seals to cover costs and sent out 10,000 cards for outreach that year. This would be a theme for my parents, as they fought for their daughter’s growth and well-being, they became political advocates for many other children and their families.
My parents also struggled to get Gay her first wheelchair at the opportunity kindergarten and the full leg braces she needed. Since they couldn’t get the support of doctors, my parents went forward without them and working with Easter Seals ordered Gay a chair, she was thrilled (see the blog “Gay’s Red Wheels”)! Unfortunately, there was no law that required transportation of wheelchairs to school so when my parents started Gay (5 years old) at the Intermediate School (ISD) in Temperance, my Mom drove her there each day and was fortunate to have the means to make that drive. At the same time, my parents were anticipating the opening of new ISD center in Monroe (where Gay would attend school for over 20 years) and were renovating my grandmother’s old farmhouse in Ida. Managing that project while my Dad worked, caring for Gay and taking her to school every day, along with having me as a toddler was a lot for my Mom to manage on her own. Like many mothers with disabled children, she did it.
During this time, my parents and grandfather were also engaged with the Institute for the Study of Mental Retardation and Related Disabilities (ISMRRD) in hopes of finding a program that could support Gay’s learning and ease the demands on my Mom that required her to be both mother and teacher. I looked up information about the Institute which was organized at the University of Michigan and was an interdisciplinary institute with a threefold purpose--to engage in research, to provide community clinical services, and to train students in the treatment of mental retardation. The institute operated from 1966-1982. It was initially led by a professor, William M. Cruickshank
The information in the Syracuse library tells how after receiving his degrees from the Michigan State Normal College (1938), the University of Chicago (1939) and the University of Michigan (1945), Cruickshank was well qualified as a professor of education and psychology. But more importantly “it was his interest, expertise, and ardent belief in special education as a discipline equal to that of medicine or law that recommended him for something more than teaching. After reading his book Disputable Decisions in Special Education, you understand that Dr. Cruickshank was an advocate for differently abled people (what he termed “the exceptional child”) their rights for education and trained professional teachers that understood their needs.
However, my Mom did not feel supported in a hard to schedule meeting with the ISMRRD. She remembers having a fever of 101 and walking into a huge room of people with Gay. Each “expert”/therapist in the room examined Gay and when they saw how tired my Mom was they recommended that information be given about institutionalizing Gay because there was not a physical AND otherwise health impaired program. My Mom remembers crying through the entire meeting and not feeling hopeful. Unfortunately, this is a similar experience to many of my friends with “exceptional” children as they navigate systems that are not designed to support differently abled people or their families.
My family’s experience highlights the importance of training teachers and administrators in understanding the needs of differently abled students. Gay was at the Temperance ISD from 1970-1972 and my parents describe it being more like a daycare center then a school designed to support Gay’s growth in development. As the farmhouse neared completion (1972-1973) and my parents were ready to move to the newly built Monroe ISD, they continued to faced challenges with finding the right classroom for Gay. She was placed in a severely mentally impaired classroom with a non-degree teacher who didn’t understand Gay’s needs (my sister was severely physically disabled but had higher cognitive ability). The school personnel didn’t want to place Gay in the trainable mentally impaired classroom because Gay was not able to go to the bathroom by herself. A teacher who was a friend of my grandfather finally offered to take her and potty train her in a classroom where, unlike Gay, all the students walked and talked. Along the way to finding the right classroom and teachers Gay had many injuries to her face and body falling out of a chair and from crawling, all due to the lack of proper teaching skills and services during her early years in school (it does get better later). And yet, in 1972 the Monroe ISD was out in front of the federal law of 1973 and provided specialized teachers and training. They also had a bus for wheelchairs and you can read more about how important the school bus was to Gay in the blog “Gay’s School Bus”. It was also important for my Mom that Gay could finally be transported to school.
While my parents were negotiating these things, I was a toddler between 1969 and 1974 and then entered kindergarten. I have vague recollections of growing up at the house in Sylvania, a pool party at a neighbor’s house, our backyard, a sandbox and Gay with walking bars in the yard. But most of my memories are from Ida, growing up at the farmhouse and attending elementary and middle school in there. My parents describe that my transition to school was effortless in comparison to what they negotiated for Gay, I simply got on the bus and went to school. Pre-school was not available for me, and I entered school in kindergarten. While the experience was easier, my parents share that they had to negotiate to get me in the right reading program that matched my capabilities. I also remember vividly a kindergarten teacher who didn’t want to me to talk about my sister, because it was too sad (really? Dr. Cruickshank had a lot to say about that kind of fear and guilt in his book). Then in first grade, I ended up with a wonderful teacher, Mrs. Wilson, that would make school an engaging experience for me developing my love of and capacity for learning. And in my homesickness at school that year, I met my friend, Angela Fisher (now Link). Having a strong group of girlfriends and peers would be a source of strength for me throughout my life and Gay’s as well. More on that in the next blog!
What I hope you take away from this blog was that the support systems and educational opportunities that exist today for differently abled people, while not perfect, are the result of advocates who changed federal laws and policies and researchers like Dr. Cuickshank. In regards to our story, at an early age my educational needs were more easily met and negotiated. And finally, but most importantly, without my parents resolve for Gay to have the most independent and fulfilling life possible, she would not have been the wonderful woman we all came to love and wouldn’t have lived the way she lived.
What a tragedy it would have been for all of us, and her community, to have hidden her away in an institution.