In 1975 Congress approved a law which gave all disabled children access to free public education and mandated that schools provide individualized instruction in the least restrictive environment possible.
This was a great victory for previous generations of families whose children had been secluded from schools and society because of physical or mental delays and spearheaded, if not total acceptance, at least the tolerance that people with disabilities experience today.
By the time our son, Jonathan entered preschool in 1983, “inclusion” was the buzz word of special education and children with mental delays were being mainstreamed into regular classrooms with the idea that being with their “typical” peers would create positive, normative role models for them.
The pendulum swung from isolation to total access and Jon, who was born in 1980, is part of a generation that was first to grow up in this inclusive environment.
My own pendulum has swung back and forth over the years as we dealt with the positives and negatives of mainstreaming. Now that Jon is an adult, I’m seeing the end results of the concept in real time. I have come to the conclusion that it is not a one size fits all package.
Inclusion worked out fairly well in the elementary years. Jon had some friends at school, but being in a regular classroom didn’t guarantee invites to sleepovers and birthday parties or getting picked for the dodge ball game. The phone or doorbell seldom rang after school or on weekends, with requests for Jon to come out and play.
The nuances of inclusion and being around regular developing peers can give kids like Jon the hope that they will eventually live a “normal” life, like everyone else. That can lead to disappointment and frustration for those who are cognitive enough to know that isn’t happening for them.
Once Jon’s peers reached the age when they began driving, dating, going off to college, joining the military or finally getting married and starting their own families, inclusion became a mute point. Everyone else moved on and Jon remained where they left him.
I recently read a news story about a school in Ohio that is trying what they refer to as “reverse inclusion”, bringing the typical high school-er into the special ed classroom as part of their curriculum, to interact with and assist their disabled peers (http://www.disabilityscoop.com/2013/03/19/in-twist-inclusion/17525/). Some professionals and parents are offended by the idea, saying it is still segregation and makes people with disabilities little else but a project.
I’m not so sure. Maybe bringing others into the world of the disabled, instead of always trying to fit them into ours, is a welcome addition. To truly understand the challenges of the disabled, their reality must be entered rather than viewed from the sidelines. It’s easy to ignore a special needs peer in a regular classroom while you laugh and talk with your other friends, but it is impossible to ignore him when you are on his turf and up to your eyebrows in his challenges.
I’ve discovered what is preached in the school system does not always translate well into the real world of adult life. While schools may create the environment of inclusion, what actually takes place in the community for people with developmental delays costs money and a lot of it. With state budgets shrinking, the services available to give people with disabilities the most “normal” life possible ( which is the ultimate goal of special education inclusion) are limited at best and many of the people who interact with disabled adults, providing respite and companion care, job coaching, supported living or transportation are usually family and paid “friends”.
Should inclusion be stopped? Absolutely not. I believe that Jon’s function level was elevated and he benefited in many ways because of it. But it is not the utopia that some professionals like to hang their PHD’s on, after all inclusion is not just a law, theory or experiment but a matter of the heart.
Maybe a few of these typical kids in Ohio who participate in the world of their special needs peers will later develop a heart for truly “including” adults with disabilities without getting paid to do so. Maybe they will be the ones that reach out to invite a disabled person to their home for dinner, to a movie, for a walk or to church. Maybe they will be the ones who won’t mind dealing with some of the issues that can come with developmental delays in exchange for the joy and friendship that is returned. Just maybe…
Inclusion may now be viewed as the politically correct version of assisting and incorporating the disabled population into everyday life, but based on our experience and in my very humble opinion, anything that bridges the gap is worth a try.