On Integration, Adaptation, Comfort Zones, and what is just beyond them
Rebellion against your handicaps gets you nowhere. Self-pity gets you nowhere. One must have the adventurous daring to accept oneself as a bundle of possibilities and undertake the most interesting game in the world — making the most of one’s best.
Harry Emerson Fosdick
Years ago, it was widely accepted that any person who was noticeably different (religious belief, skin color, intelligence, mannerisms, etc.) was incapable of integrating into the mainstream. What was done with these minorities depended on geography, socio-political norms and more, but the common denominator was that the uncommon denominator (sorry – couldn’t help myself) was segregated. Without turning this into a history lesson, hundreds of years, thousands of lives, lots of blood, sweat, tears, and constant change, and we now live in a world that thrives on all sorts of affirmative action: quotas for hiring people of different race, or people with various disabilities, wheelchair accessible building codes and funding for research on how to include individuals with developmental disabilities in the workforce, the education system, and the community.
For the sake of comparison: whereas 50 or 60 years ago, a family might have kept their autistic son hidden from neighbors and certainly out of sight at family events if he wasn’t institutionalized altogether, in today’s world that same boy is enjoying various volunteer mentors/advisers/chessed-doers on a regular basis. He is well loved by the staff at his school and summer camp, and is the faithful if not obsessive Adon-Olam reader in his shul’s weekly teen minyan. What could possibly be wrong?
As a society in general, or as the Jewish community in which we find ourselves, so much has been done to advance opportunities for individuals with a range of diagnoses and disabilities. On a social level, we have come to learn about and accept those individuals who exhibit differences; behaviors other than our own. Yet, too often, these individuals are offered these opportunities, jobs and outings as they fill the roll of “Chessed case” instead of peer.
Mainstreaming in the classroom has been debated and will continue to be debated. What is so often the subject of these debates is the overall educational quotient; that is, how much the class, on average, is learning given the diversity of the students’ abilities. Other issues discussed are the benefits and challenges to the social structure of the group. What is glaringly absent from the discussion is the question of whether or not a society or system that has been formatted for the majority of thinkers can be adapted or even should be adapted for a minority. While introduction of students other than the mainstream engenders sensitivity and understanding, and definitely has potential to decrease bias, it also sets a tone of tolerance as opposed to acceptance. It is much easier for a student of 10 years old to tolerate a strange outburst from his classmate with Down Syndrome and to explain it to himself as “Oh that’s just Jason….he has special needs and I love him” , than it is for the same individual to discuss the behavior with the student. Kids ask all sorts of questions. Why do we discourage them from asking questions like these? True, there are schools and individuals that encourage discussing other people. I am talking about actually addressing the individual with the different behavior. After all, they know themselves best!
In his book, “Front of the Class“, Brad Cohen, a teacher with tourette’s syndrome teaches his students that: “you can’t judge a banana by the outside. The outside of the banana might be all bruised and discolored and look really nasty, but once you open the banana and peel the skin back, there could be a nice, clean, fresh banana inside. I also explained that there are all different kinds of bananas, just as there are all different kinds of people, and that we shouldn’t judge either the people or the bananas in our lives until we have the chance to “peel back the skin” and learn what’s inside.” If we don’t take the time to peel back the skin, how will we know? Put differently: there are definitely bananas out there that are blemished under the skin. There are bananas out there that are not blemished under the skin. If we lump them all together and just assume that somewhere in the middle is true for all bruised bananas, we’ll never fully appreciate the individuals.
Do we really value every single individual as equal and upstanding members of our communities? Do we expect so-called appropriate behavior from individuals with (what has been diagnosed as) a lower mental capacity? Do we take them seriously? Do we all say to ourselves “Oh that’s just Jason….he has special needs and I love him”, or do we engage Jason, find out what drives him, why he acts a certain way and how he feels when he acts that way.
We have come so far in the last 50 or 60 years in terms of acceptance. But do we truly understand? Do we want to understand? As a society are we guilty of sewing the emperor’s new clothes?
Adam was a student of mine. A young man with Down Syndrome, he was and is quite aware of his differences and similarities with his peers, siblings and neighbors. When asked by a high school student how he feels about his disability, Adam – with perfect poise (and a significant speech impediment) – said: “some people are tall, some people are short, some people are fat, and some people are skinny. I have Down Syndrome”. I share the following in the hope that we can start re-teaching ourselves to not only tolerate and accept, but to understand and value individuals with disabilities.
Adam had been looking forward to performing with the school band. There was one problem: Adam didn’t play an instrument. The bandleader thought it would be so wonderful for Adam to perform, that he allowed Adam to join them for practices but never actually gave him an instrument (why would he?). As the big day edged nearer, Adam shared his excitement. “But Adam”, I said, “I hope you don’t take this the wrong way, but you and I both know that you don’t play an instrument!”
The bandleader hadn’t taken him seriously enough to let him tryout because of the risk of having to upset someone with a disability. While that was understandable and even meritorious, he was almost guilty of letting Adam make a complete fool of himself on stage in front of hundreds of others! Here’s how the story continues:
- Adam tells band leader of our discussion
- Band leader, bewildered, confirms with me that Adam indeed understands that he does not actually play an instrument
- Adam is very upset over his lost fame and cries for a few minutes
- ADAM TELLS ME THAT HE REALLY HAS TO GO ONLINE AND FIGURE OUT HOW TO PLAY AN INSTRUMENT!
When confronted with reality and treated as an equal, Adam stepped up to the plate and acknowledged what he benefited by being taken seriously.
Whether or not we stand in favor of mainstreaming in the classroom, let’s not shy away from differences. They are real and they are too often the elephant in the room. Differences don’t make us better or worse; they just are. If we choose to acknowledge the person with the difference and allow for his or her differences to be present, we stand, as a society, to gain so much from these individuals. We can go beyond our comfort zones and allow new and exciting possibilities to be realized. We can restructure our schools and shuls and stores and industry and our communities and we can help ourselves by encouraging other people to develop to the best of their respective potentials as we pursue our own.
Remember that Adam, and Jason, and Brad are keenly aware of who they are – if they are conscious of it and are making concessions and adaptations to best succeed in a world that is not ideal for them, can’t we at least acknowledge who they are and what they are doing to succeed?
P.S. He worked on his drumming and sat in for a few minutes at the next performance. But that’s beside the point…