Last week, a mother describing her eight year old son who has disabilities had this to say: “He is doing 6th grade math. In fact, he goes around all day calculating pi, but he can’t find his classroom from the entrance of his school building.” She went on to tell me, “This is a boy who is thinking about pi 24/7, and the school expects him to change classrooms, some of them in different buildings, for all his subjects. They’ve given him a key, which he has no ability to use, let alone keep track of, to travel from building to building. How is that inclusion!?”
As this mother suggests, inclusion is more complicated than it looks. According to the Merriam-Webster dictionary, inclusion is defined as: “The act of including; the state of being included; the act or practice of including students with disabilities in regular school classes.” The Merriam-Webster thesaurus claims there are no synonyms for “inclusion” and directs the searcher to “inclusive” under which the following are listed: all embracing; all-in; complete, embracive; universal.
Now we are getting closer. As a psychologist and the mother of a 28 year old daughter who has disabilities, to me and other kindred parents, inclusion means including for everyone’s needs. If you simply plunk a kid down in a mainstream setting without the proper preparation, modifications and awareness, you are not “embracing” that child. You are not setting them up for success. This goes for adults with disabilities too.
Everyone wants to be included. When a person experiences a profound and unexpected loss, or even an expected one, a rupture occurs in that person’s sense of belonging. He or she feels a heightened sense of aloneness—a felt experience of being alone with the deep pain of difference that he and he alone must bear. All of the parents I’ve talked with describe this kind of isolating pain upon receiving the news that their child has a disability. As Andrew Solomon so aptly says in his recently published book Far From the Tree, “…our children are not us….And yet, we are our children.” (2012, p.1). I think the same could be said about families. This is why the effects of disability seep into the life of every member of the family.
To the extent that we define spirituality as a meaningful connection to ourselves, others and something larger than ourselves, a parent’s realization of a marked problem with their child is a spiritual crisis. It shatters one’s fundamental sense of a world that makes sense. In time, most parents come to genuinely treasure their child in all of his or her splendid uniqueness, but the job of parenting (or brothering, sistering or grand-parenting) a child with any sort of disabling difference requires a kind of forbearance, courage, stamina and resourcefulness that no family is prepared to supply.
People with disabilities are the largest minority in our country. With an ever growing older population, the percentage of us living with disabilities will only increase. Research demonstrates an intimate connection between spirituality and positive coping with a disability, for individuals as well as for their families (2007, Boswell, Hammer, Knight, Glacoff & McChesney). Participation in an accepting community acts as a kind of protective mechanism, a hedge against the loneliness, exhaustion and hopelessness that often accompany disability.
As families, we need our communities to understand that if the challenges we face aren’t recognized along with the unique opportunities, our heartache along with our joy, then we are not seen. Similarly, to include us and our children requires an appreciation of what our families have to offer as well as the special care we need. Cater only to our needs and you diminish us. Pretend that our children are only delightful variations on a theme, and you dismiss the arduousness of our journey. True acceptance and inclusion mean embracing the whole complicated package, and it means making room in communities for people who have very real difficulties alongside singular and sometimes fascinating gifts.
Dr. Nancy Crown is a clinical psychologist in private practice New York City. She is the mother an adult on the autism spectrum, and co-founder/ co-director of “Shireinu”, the Congregation Rodeph Sholom initiative to create greater opportunities for inclusion in synagogue life of families with members who have disabilities. She has presented widely, and published on topics related to disability.