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?
A good friend of mine 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.
Expect as much from a friendship as you put in. Chat online, go for a drink, make each other laugh, cry into each other’s arms, piss each other off, be wingmen, make mistakes, get in trouble, post silly pictures to Facebook and set the world on fire.