For most of my son’s eighteen years, he has been just a little too disabled. Too reliant on a provider for his personal care, too nonverbal, too cognitively impaired to attend summer camp, join a sports team, or take an art class in his senior year of high school. It’s not that there aren’t some great opportunities for kids with developmental differences—they just need to be “able” enough to take advantage of them. Severe autism has disqualified and isolated my beautiful son throughout his life.
Now that we are BUILDING OHANA, an intentional community of support for people with disabilities, their families and friends, the question of being “too disabled” has arisen again. For you see, there are some who believe that in order for a person to successfully live in community, one must be “able” to do so. The circle closes: the ability to care for one’s personal needs, and interact with others in appropriate ways is requisite to inclusion. It's summer camp and art class all over again.
In communities where individual contribution to common good and relationships of mutual benefit are values, Jonathan doesn't always measure up. That's because it's hard to measure what knowing Jonathan means to the people around him. If he could only "do more," it would be so much easier to live with and stand by him in daily life. It's important to do one's part, some would say.
Sometimes, even those whose loved ones are affected with developmental disabilities can think this way. Having worked so hard to connect their "higher functioning" son or daughter to the world around them, it's harder to see the value of relationship with someone like Jonathan. Common models of inclusion emphasize the importance of relationships with typically developing peers whenever possible, and discourage the limiting to or grouping of people with disabilities.
Thankfully, Jonathan’s friends don’t think this way. In his school, some of his best buddies are “higher functioning” kids with developmental differences, and they recognize in Jonathan a great kid who needs friends just like they do. They miss him when he’s not in school, and ask, “Where is our Jonathan?” Apparently he contributes to their lives, and they know this. They like to help him, too. He needs encouragement, and sometimes a helping hand. They offer patience, smiles and pats on the back. They walk him from class to class, because without them, he might get lost. In return, they seem to be proud of their own contribution to his life, and that is life-changing for them. After all, aren’t we made to help others? Aren’t we all made to do that, even when we need help ourselves?
I don’t want Jonathan to believe he isn’t important in the lives of others. I don’t believe it, even when it appears that all he does is need and need and need. This is an illusion, because Jonathan actually blesses everyone in his life. Some people are better equipped to see this than others, but it is always true.
And so Jonathan will qualify for life in Ohana, as will others who may have been refused access by virtue of their differences. The people who live there will help him, and he will help them back. So will we all, even those of us whose disabilities are not yet so evident. We won’t be able to take care of everything, of course, but we will be doing what we can, as friends, as neighbors, as intentional community. And that will change us.