One of the great storytellers in disability advocacy was Lou Brown, co-founder of TASH, who passed away a little over a year ago. And so today, on Tell A Story Day, I wanted to share one of Lou's fables that he gave me permission to update and share.
The story of Sally and Regina, the Smith twins
Mrs. and Mr. Smith had twin girls, one named Sally and the other, Regina. The twins were not hitting their developmental milestones as they grew older, so the Smiths had the girls tested. The results showed that each twin had an intellectual disability.
Subsequently, the Smiths divorced. Each parent gained custody of a daughter and raised her as they saw fit. Sally went with Mr. Smith, and Regina went with Mrs. Smith.
Sally and the self-contained classroom
Mr. Smith wanted Sally to attend a public "special needs" preschool program seven miles from her home. After preschool, Sally stayed at the school to attend a multi-grade segregated special education classroom, with students ranging from kindergarten through 5th grade. Her neighborhood school, which was one mile away from her house, didn’t have this kind of specialized program.
Every day, a special education bus took Sally and other students with disabilities from their homes to school and back. At school, Sally spent her entire school day, along with recess and lunch, with the same set of classmates with disabilities, a special education teacher, a paraprofessional, and related services providers.
None of the teachers, paraprofessionals, or therapists who worked with Sally had a meaningful understanding of grade-level content. Through middle and high school, Sally stayed in a segregated classroom for students with intellectual disabilities, only interacting with peers during music, art, or PE when it was feasible in the general education schedule.
Before her last year of school, her transition team met to consider her options. The team concluded that Sally required extensive support throughout her day to meet her needs.
When she aged out of her special education program, Sally went to a sheltered workshop about ten miles from her home. A van came to her house and brought her to and from the workshop every day. At the workshop, she participated in aerobics, ceramics, lunch, breaks, and all other aspects of her day program with her disabled cohorts. Occasionally, she and her group went to the YMCA, a bowling alley, and the nearest enclosed shopping mall.
Sally does little for herself. She is continuously supervised by people who are paid to be with and to do things for her. She interacts almost exclusively with disabled adults, family members, and paid support staff. Her experiences are limited. Sally is underachieving—she produces very little meaningful work, and she does not express a work ethic. She is capable of so much more.
Regina and the inclusive classroom
Now, consider the drastically different outcome that Mrs. Smith arranged for Regina. At age three, Regina enrolled in the early childhood program operated by her faith community blocks from her home. She was the only child with an intellectual disability who attended.
At age five, she moved to a kindergarten class in her home school, the school she would have attended if she were not disabled. She was the only student with an intellectual disability in her class. Each day she rode the bus to school with her neighborhood peers. At school, she went to recess, lunch, specials (art, music, and PE), and almost all other events of her school day with classmates without disabilities. Her special education teacher and therapists collaborated with her general education teacher on a variety of issues. The grade-level academic curricular content experienced by her classmates was adapted for her if and when reasonable.
Regina's special education teacher created a portfolio of her cumulative academic, social, and functional skills. The portfolio served as a record of the essential skills that Regina acquired and used. When Regina learned a skill, she was required to demonstrate it in a variety of relevant school and non-school settings (e.g., when cooking, shopping, cleaning, playing games, doing things for and by herself, and working and traveling about her school and community). This helped Regina retain what she learned and allowed her to accumulate necessary skills over the years. Most importantly, it didn't waste any time.
A paraprofessional supported Regina during the day when needed. Regina sometimes received pull-out therapy services, but most were delivered while she was with her typical peers. She received one-on-one instruction for about one hour per day. Otherwise, she spent the vast majority of the day in settings where she was the only student with an intellectual disability.
About once a month, she participated in a "sleepover" with schoolmates. Many days after school, she played in the park near her home with friends without disabilities. Almost all who were involved with her spoke of how nice she was, how independent she was, how much she did for herself, and how hard she tried.
At age eleven, Regina and her portfolio moved to her local middle school. Regina's day looked much like it did when she was in elementary school, except for the additional transitions from classroom to classroom. Two days a week, she stayed at school until five o'clock in a supervised "open gym." The other three days, after-school was filled with a school-sponsored volleyball club and "Brownies" troop meetings with Regina's neighbors. On Sundays, Regina was involved in integrated "Sunday school activities."
At age 14, Regina (and her portfolio) moved to her local high school with the students with whom she had attended elementary and middle schools. She received one-on-one instruction for about two hours per day, and her schedule included math, art, PE, history, literature, and science. All classes were modified for her.
Regina's high school had a "no-cut" policy at the freshman level for sports teams. In the fall, Regina was on the volleyball team; in the winter, she was on the basketball team; and, in the spring, she was on the track team. During Regina's freshman year, 90 percent of her school days from 3 to 5 PM were spent at practices or games related to the three sports. During her sophomore, junior, and senior years, she was a manager for the three teams. One night a week, she was involved with her Girl Scout troop, and on the weekends, she spent time with her faith community.
During the first semester of Regina's freshman year of high school, she left the campus one half-day per week to learn real work and related skills. She learned these skills in a non-school integrated work environment, like an office in a local hospital. During the second semester, she received instruction one half-day per week in a different integrated vocational setting, a grocery store. That summer, she completed an internship at a daycare center.
During her second year in high school, Regina participated in three new integrated vocational training experiences. She was also taught to prepare and bring a snack to her work training site, to use public buses, and to take work breaks with coworkers without disabilities. During her third and fourth years in high school, she participated in six additional integrated vocational and related training experiences. At ages 19 through 21, she received all of her instruction in a non-school integrated vocational setting.
Throughout her school career, Regina was taught many academic skills in her difficulty range. Before her last year of school, her transition team met to consider her options. The team concluded that they could have done more to prepare her to live, work, and play in an integrated society at school exit. Still, the team was proud of what they accomplished. Those who conducted her final school assessment concluded that her life appeared pretty balanced.
After Regina aged out of special education, she moved into an apartment with another person with disabilities. As they could not survive and thrive by themselves, extra support was provided by residential service agency personnel. A "life coach" came to her apartment to make sure that it was clean, that medical appointments were being met, that she shopped for what she needed, that food was available and prepared adequately, and that she visited local parks and theatres.
The vocational agency assigned her a "job coach" who provided the extra support she needed to be successful at the large grocery store at which she worked. She is on the bowling and softball teams sponsored by her employer.
Regina lives a dramatically different life than her sister Sally. As an adult, she functions in a comprehensive array of environments and activities. She has remarkable functional skills. She is kind to others, has a good work ethic, and enjoys a range of social relationships, which include individuals with and without disabilities who are and are not paid to be with her. She is quite active and is in reasonably good physical condition.
For people like Sally, their lives are limited in scope not by their intellectual capacity, but by the choices that were made about their education and where they learned to practice their skills.
Inclusive education is hard. Do it anyway.
Many would say that Regina lives a rather ordinary and straightforward life, and wonder why some of us think it is such a "big deal." While such life standards for most people would be considered unremarkable, we special education teachers celebrate and marvel at such a reality. We see the challenges that Regina faces daily and the risks she and those who care for her took and take. Regina would be leading a dramatically different life if her mother and those who worked with her had different values, made different choices, and had lower educational standards.
While this may only be a fable, many people with intellectual disabilities live lives similar to Sally and Regina.
For people like Sally, their lives are limited in scope not by their intellectual capacity, but by the choices that were made about their education and where they learned to practice their skills. People like Regina can lead more fulfilling lives, and that's no accident. Regina was given access to a more inclusive education than Sally, and there's no doubt that it benefitted her greatly.
Inclusion is hard. It's much easier to separate people based on their abilities and to chalk it up to create a safe environment for people with disabilities. But the right thing is rarely the easy thing to do.
This article is adapted from Inclusion Gives Kids with Disabilities the Best Chance—Here's Why on Noodle.
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Tim Villegas is the Director of Communications for MCIE, Editor-in-Chief of Think Inclusive, and the host of the Think Inclusive Podcast. Follow him on Twitter @TheRealTimVegas.