By Joan Hocky
Recently my son and I attended a sensory-friendly program as part of Autism Awareness month at Van Vleck house, an architectural and environmental gem.
Volunteers patiently and nonjudgmentally helped our kids plant seeds, do crafts, look at animals. As we were leaving I thanked the volunteer who had welcomed us. “It’s so nice to have an event like this in town.” “Oh, yes,” she responded, “there are so many resources for you now!” I restrained myself from saying what I really was thinking — “Are you kidding me? There are so few resources for kids like mine with more severe autism.”
The public face of autism is usually someone on the mild end of the spectrum, and disability policy and community programming focus disproportionately on that segment. Montclair prides itself on its wonderful cultural and recreational resources, with a self-image of diversity and inclusion. But for those on the more complex or severe end of the autism spectrum, inclusion entails more than inspiring rhetoric or good intentions. It requires adaptations to address sensory disorders or other co-morbid conditions, other supports like aides, and more acceptance by community members.
Research shows that autistic symptoms and disruptive behavior play the largest role in how often a child is rejected by others. The greater number of those behaviors, the more isolated and excluded the family feels. The isolation and rejection experienced by people with autism and their families is similar to that experienced by others whose differences set them apart, but autism’s combination of pervasive disability and apparent physical normality create an almost perfect storm for intensified stigma. I know this firsthand. I spent many hours with my energetic younger son (now 16 and towering over me) at parks and playgrounds where he “presented” as an athletic, well-coordinated, typical child, only to display a range of behaviors — from severe impulse control, difficulty waiting in line, unintentionally violating other people’s personal space, and expressing his excitement by skipping, jumping and making odd sounds — that made other children uncomfortable and other parents judgmental.
It’s hard to describe just how demoralizing it is to care for a child who needs constant supervision, intervention and help navigating the world — in itself exhausting and isolating — only to face regular reproach and rejection. Or to be told that a drumming class or affordable recreation program is open to people with special needs only to find out that your family member is too special because of the need for supervision or modifications.
Social isolation has a greater impact on lifespan than smoking, drinking and obesity combined. No one wants to feel isolated. Every parent of a child with special needs would like nothing more than to feel part of the community, especially one as dynamic as ours. We wish we didn’t have to travel so far to feel welcome and accommodated. We take my son to West Orange for recreational activities, Livingston and Millburn for religious programs, Denville for school and afterschool as well as social skills classes and haircuts, Nutley for music, and New York City for theater and other performances. Montclair offers all of these services for neurotypical kids or those with mild disabilities, yet not for moderately-severely impacted kids or adults. We are taxpaying residents — why do we have to expend so much time and expense schlepping all over the region for what could easily be provided locally?
Ed Roberts, the father of the modern disability rights movement, fought to become the first student with severe disabilities to attend Berkeley in the 1960s (he became a quadriplegic at age 14 as the result of polio), modeled his activism after the civil rights movement. He was a radical in the best sense, thinking outside the box that others had created to constrain him. His motto, which the movement retains to this day, is “Nihil de nobis sine nobis” … nothing about us without us!
There’s much we can do as a community to increase inclusion and understanding. Having more diverse voices at the table is a good way to start, with a racially and economically diverse mix of both self-advocates — people with disabilities able to advocate for themselves — and family members of those with more severe disabilities involved in leadership or planning positions at local organizations and municipal offices.
There are so many ways we could be more inclusive; I hear them all the time from my fellow seekers of solace:
Could the annual Easter egg hunt start an hour early for those with sensory disorders who cannot tolerate loud noise and big crowds?
Could our public pools, which have evening sessions for seniors, do the same for individuals with special needs who are overwhelmed by the typical bustle in the water?
Could our movie theaters offer monthly sensory-friendly films, a service that is popular in other towns? Could we replicate an effective multi-sector model implemented in other towns that brings together business owners, nonprofit and community leaders and those with disabilities to find ways to increase job training and employment opportunities?
How about bi-lingual signage at playgrounds, pools and community centers that explains in simple language accessible to kids and adults alike, the symptoms of autism, links to screening resources, and ways to be more accepting. (“Stop staring” and “Remember that not every disability is a visible one” are two suggestions I hear often.)
I’m sure we could make positive changes so that everyone in this town, whatever their attributes and challenges, could truly be part of the fabric of Montclair.
Joan Hocky is a writer, an advocate for racial and economic equity, and a 2016-17 participant in the Partners in Policymaking program at the Boggs Center on Developmental Disabilities (part of the Robert Wood Johnson Medical School at Rutgers). To help make Montclair a more inclusive town, email barnone@gmail.com.