Sea Change Ripples

“You’re not going to believe this!” “Did that just happen?!” “That’s unbelievable!” Seemingly innocuous, these common expressions are close cousins to some much more dangerous phrases that also run rampant in the special education community: “He can’t do that,” “She’ll never be able to crawl, let alone walk,” “We won’t be able to teach her anything – especially not language.” “He doesn’t know what that means.” These incredulous attitudes prejudice a low bar for therapeutic, educational, vocational, civil and social achievement.

The self-fulfilling prophecy is a well-documented phenomenon in the field of education and yet there seem to persist a myriad of hoops through which an individual must jump to prove their readiness to learn a new skill, for example, many children are made to demonstrate knowledge of meta-linguistic skills (such as categorization, literacy or parts of speech understanding of which always occur after language has developed) prior to being given a speech-generating device (SGD) to allow them the opportunity to learn language. So in this scenario, the evaluators will prove that the student is not ready for an SGD merely because s/he does not have an SGD. Even deeper into this argument is the almost laughable fallacy in which a beginning communicator’s poor language skills are blamed for their limited use of the device and not for the device’s limitation in vocabulary; an SLP colleague met with some teachers who expressed frustration with their shared student’s lack of progress on the SGD saying “Gryffin only ever uses it to ask to go to the bathroom or to use the computer.”  Shocked, the SLP responded, “Well, those are the only two buttons you’ve given him to use! What do you expect?”

 We often run into tautological arguments from teachers, parents and therapists when presented with a novel task or program that appears to be too challenging for the student. The conversation generally follows a similar flow:

Us: We think it would be worth letting Indy give this a try.

Them: Indy can’t do that.

Us: Oh, what happened when you tried?

Them: We haven’t tried because he can’t do it.

Us: Okay, so how about we just give it a try?

Them: No. He can’t do it.

This messy circular reasoning and dangerous assumption will inevitably lead to the worst possible outcome: “they” are right.

The special education field has embraced the unenlightened theme of heroism. As professionals we are often called “heroes” and praised for our patience and big hearts. We pride ourselves in “transforming lives” and “shaping futures.” Our skills and education are praised as “superpowers.” I am uncomfortable with these terms describing myself as a professional but am appalled that this champion attitude has extended beyond school walls and into personal relationships.

I recently spoke to a local special education advocate and consultant about the needed sea change in the field and how authentic, meaningful relationships need to exist amongst people whose brains and bodies work differently than our own. Her response: “That would be a great summer job for a college student.” A couple weeks later after calling my friendship with a guy who has autism (or “autist” as he prefers to be called, rejecting the PC person-first nomenclature) “so great,” a co-worker told me that she visits a woman with disabilities “out of the goodness of her heart.” Both of these attitudes make my skin crawl. Paychecks and self-aggrandizement are not bases for friendship. A true friendship doesn’t maintain an imbalance in which one person is a hero and the other person is being saved or to draw the adulation of a crowd and it certainly doesn’t exist as a means of income.

Imagine learning that someone befriended you with intentions of putting it on their résumé as volunteer experience or merely to pat themselves on the back. What if your friend accepted your social invitations “out of the goodness of their heart?” How would it feel to know that what your “friend” gained from your relationship is the righteous feeling that they were doing you a favor? Would you feel like you were experiencing an authentic interpersonal relationship? I’d imagine not. I’d imagine you’d feel used, cheap and deceived.

How long and far does “the goodness of one’s heart” stretch? How long do the warm fuzzies of heroism last? Does the time between visits, outings and emails gradually increase until they disappear? If our own goodness is the drive, then yes, the relationship will disintegrate. Only when we are open to giving and receiving equally will meaningful relationships be forged.

What do you expect to gain from a friendship? Do you expect to have someone to depend on, someone to trust, tell secrets to, enjoy, laugh and gossip with? Or do you expect to only take away from a friendship the warm, fuzzy feeling of doing someone a favor? Don’t enter a relationship expecting to rescue someone from loneliness and be rewarded with devotion and praise. An equal balance must exist between what you get out of a friendship and what you give. If your friend receives a monthly dinner date, FaceBook friendship and laughter at their jokes but your reward is a pat on your own back, then you are not an authentic friend and you are certainly not a hero.  

My world has been rocked. I have worked in the special education arena for twelve years and a series of revelations have disheartened me to the point where I’m taking career quizzes online. “Helping kids” has always been the clichéd ultimate goal for me and my peers but the social injustices toward our students and the adults they become has halted me. I have become enraged, tearful, I've ranted and I've come up with maybe one decent idea.

 Over the last few years I've had conversations with parents, special educators and individuals with disabilities which have been altering my perception of education and acceptance in the field. One parent when faced with the question, “what is wrong with your daughter?” internally replies, “the thing that is wrong with her most of all is that she lives in an unfair world, one that isn’t ready for a kid like her… What’s wrong with her is US. What’s wrong with her is the world.”

The biggest problem for children and adults with special needs is how the world treats them. How many IEP goals must be written and mastered; how many therapy sessions, social skills classes, team meetings and field trips must be attended; how many therapists, paraprofessionals, psychologists, behaviorists, teachers and doctors have to be involved before the WORLD is ready for individuals with disabilities?  How much does an individual’s brain and body have to function like our own before we are ready to have a meaningful relationship with them? The greatest deficit is hardly being recognized, let alone treated. The month of April is still celebrated by most as Autism Awareness Month, a silly time for wearing blue and flooding social media with inspiration porn. We are AWARE. And some of us are taking steps toward Acceptance but have we really- I mean REALLY accepted people whose brains and bodies work differently to our own into our social circles, workplaces, communities?

One of my best friends and colleagues is autistic and recently described to me the mask he wears everyday at work to conceal his true nature. He knows that even his friends and co-workers who share the common goal of improving the lives of children with autism won’t understand his true face. I was honored to have dinner out with him and he chose to not wear the mask. The behaviors he demonstrated in the restaurant: vocalizing, rocking, hand-flapping (the outward expressions of his emotions) aren’t the problem; the discomfort displayed by the staff and other patrons is the problem.

The lowered expectations are gut-wrenching and the uncomfortable stares are exasperating but even worse is the patronization.  My friend, the talented writer, artist and self-advocate has been pinched on the cheeks by co-workers and I have been called “so nice” for being friends with him. The condescension towards him because of his diagnosis and the elevation of me because I enjoy socializing with him would be slightly more excusable if it were coming from the uneducated public, but this attitude from special educators enrages and disheartens me. They have no sight of his worth or humanity.

A sea change is in order and I’m pleading for the first ripples to spread. My ideas and reach are feeble, but here is one thought: Peer modeling is a special education concept in which a peer shows a diagnosed student how to perform a task. I’m feeling compelled to flip this around. The patients, clients and students are now the neurotypical, able-bodied population. Advocates, allies and friends are the models. Let’s create more moments in which we are trusted by our friends to take their masks off, to be themselves, to make a mess when they eat, to use a picture menu, to hold up the line while using a slower communication method or make noise in a movie theater and in which we do not apologize for them or feel embarrassed or worse, feel like we are heroes for doing it.

We need a call to arms. Join the fight. Be enraged that individuals with disabilities are treated as second-class citizens and not given opportunities to have meaningful relationships. Call out your peers for making assumptions based on abilities and disabilities. And most of all, be open to deep and meaningful relationships with people with disabilities. Give yourself the opportunity to have friendships that transcend social norms and do it for yourself and the world, not out of pity or saintliness.