Congress passed the Americans with Disabilities Act in July 1990, and ever since, people with [SG1] ability differences have been celebrating Disability Pride in July. The month-long celebration evolved from the law’s anniversary and gives visibility to those with such differences — and provides others with a chance to learn and connect.
According to the Worldbank, over 15% of the world’s population live with ability differences — missing limbs, hearing and/or sight loss, fragile or extra chromosomes or genetic differences. Some have cognitive or intellectual differences. Those with cerebral palsy often have a movement disorder due to oxygen deprivation in early development. Some are born with congenital physical conditions such as spina bifida, but others develop disabilities from accidents, war and conflict.
Not all disabilities are visible. Some are related to health conditions such as Ehlers-Danlos, a genetic connective tissue disorder. In fact, the University of Massachusetts reports that an estimated 10% of people in the U.S. have some form of invisible disability due to medical conditions. Such conditions may become visible[SG2] , such as multiple sclerosis and neuromyelitis optica. Others live with any of the myriad other disabling conditions including diabetes, which can result in amputations, cancer or other illnesses.
Living with a disability or caring for anyone with a disability teaches a person to make peace with limits, barriers, awkward interactions, and less than mainstream expectations about how life will unfold. Ability differences are teachers and the learning instructs us in vulnerability, humility and self-awareness.
For this reason, we’re featuring an anecdote from a learning support specialist, Gwynn Willis, who spent decades working with students with unique needs. Her account captures what it means to discover what we need to learn from fellow human beings with ability differences. Please note, parents of such youngsters often build the strongest momma-bear instincts. It’s part of how they care for their beloved children. That said, with new therapies and interventions constantly being introduced, it can be difficult for parents and professionals to navigate. In these situations, it’s not as much a question of right or wrong as how to come together. [SG3]
Here’s Gwynn’s account: It was the fall of 1979. I had just graduated from college and was hired by a large rural school district in Tennessee to work with a first grade student. He was my only charge that year. Or should I say, his mom was my charge. Billy was profoundly deaf and his mother wanted him to speak. I was up for the challenge as a newly minted speech therapist. What I didn’t realize was mom’s tenacity. She made the rules for the school and threatened to sue at every turn. I was brought on board to appease her and perhaps delay the inevitable. We were not going to teach Billy to use speech as his primary means of communication. He didn’t wear hearing aids and his mom would not allow sign language to be introduced.
I spent hours in a small area separate from most classrooms drilling Billy to watch my lips and produce sound. He tried so hard to comply, but all that emerged from his mouth were guttural sounds that didn’t even come close to a word. The school district paid for my training in a new methodology of teaching speech production to pre-lingually deaf children.
I flew to Washington, D.C. for the days-long training. Billy’s mom wrote me notes of encouragement; “I know our boy will talk one day and you will be his best teacher.” No pressure, I thought. None at all.
Months into the school year, I was feeling defeated. I was letting everyone down. Billy was no further along than when I’d started. Billy’s mom was not veering from her goal and the school district was trying to avoid a confrontation.
Billy did not find his voice, but I finally found mine. I researched, collaborated with other educators and concluded that Billy needed another means of communication. This precious and courageous little boy was giving it his all, but we weren’t listening to what he needed. As parents and educators, we were the deaf ones. In a frenzy to appease a heartbroken mother, the school district failed to take into consideration what the child needed.
This first assignment was my trial by fire and this is what I learned.
Parents are fragile and often devastated that their child will need alternatives to traditional education. The stages of grief are wide and varied and unless we walk in their shoes, we have no right to judge or squash their hopes and dreams for their child. Parents of children with special needs should be handled with care and compassion.
The children with special needs are the real teachers. They each possess individual needs, and if we adults take the time to observe and get to know them, we will learn how best to teach them. I worked with children who had IQs in the genius range to students who were non-verbal in wheelchairs. What I can say is that I learned more from them than they ever learned from me.
As a person trained in the field of Special Education (now often called learning support), I discovered no amount of book learning will ever match working in the trenches. A set of symptoms or data may give us a framework to go by, but each child and set of parents come from circumstances that alter the best data, the best definition of what outcomes to expect and things change over time. We need to be sensitive to those changes and adapt our expectations as needed.
I worked with Billy for a year and a half until I was moved to another position within the school district. I don’t know what happened to Billy after I left. His mother still spoke to me, but was distant. When my supervisor would see me out in other schools, he would nod and offer a bleak smile. About 10 years later, I was leaving a high school when I heard this loud guttural sound coming from a group of students. I looked towards the sound and there was Billy, all grown up. He grabbed me in a bear hug, nodding and grinning from ear to ear. No words came forth, but who needed words?
Gwynn’s insights point to the extraordinary value of elevating the visibility and creating connections in Disability Pride Month. It creates space to grow and learn. The League of Women Voters works closely with disability rights organization and believes that the federal government shares with other levels of government the responsibility to provide equal opportunity for education, employment and housing for all persons in the United States regardless of their race, color, gender, religion, national origin, age, sexual orientation or disability.
For more about ability differences and rights, visit The Arc’s webpage about how and why to celebrate Disability Pride Month: https://thearc.org/blog/why-and-how-to-celebrate-disability-pride-month/.
The League of Women Voters, a non-partisan, multi-issue organization encourages informed and active participation in government, works to increase public understanding of major policy issues and influences public policy through education and advocacy. All men and women are invited to join the LWV where hands-on work to safeguard democracy leads to civic improvement. For information, visit the website www.lwvmontcoin.org or the League of Women Voters of Montgomery County, IN Facebook page.
