Early yesterday morning, Max was swiping his finger on his iPad, maneuvering his way around the Neflix menu. We usually go through Apple TV but the remote was missing. (perhaps you've seen it?) and Max knew how to access it through his iPad. It was 6:30 a.m. and Ben had asked to watch Thomas the Tank, one of the most boring TV shows in the history of TV shows.
I thought I saw it scroll by on the screen.
"Wait, Max!" I said. And then I leaned over and swiped, only I messed up and took us to the wrong program.
"Nooooooo!" said Max.
Instantly, I realized I should have asked him if he needed my assistance. I likely would have reached over and done the same if it was Sabrina, but ever since I read something a couple of months ago about not over-helping people with disabilities I've been more aware of not doing that to Max. Titled "Hell-Bent on Helping," the chapter is in Creativity and Collaborative Learning, a book for education professionals. It was published in 1994, yet I felt as if it could have been written today:
One of the biggest challenges teachers face in inclusive classrooms is getting other kids to stop doing everything for the child with disability. Too much help, even when enthusiastically given, is fundamentally disempowering....
Been there, done that to Max. I have no excuse except that as his parent, I am used to lending him a hand. Max required a lot of help when he was little and I got used to helping him—too used to it. And then, of course, Max got accustomed to Dave and me doing things for him. Many parents of children with disabilities are aware of the school ability phenomenon: when your children do things independently in class that they refuse to do at home, because they are used to being enabled by you. You know, like self-feeding or cleaning up after themselves.
Adults with disabilities are all too familiar with the issue. In her blog post How Did You Get Here?" Or, Why I Wish People Would Stop Questioning My Independence, writer/activist Emily Ladau notes that people regularly rush over to help her get in and out of her van in parking lots, "never once considering the very obvious fact that I clearly got there in my own vehicle and drove there on my own."
An online friend who uses a wheelchair, Lauren, told me a story from her adolescence that's stuck with her. "I made a friend when I was about 15 who while otherwise lovely, did something when she invited me over for dinner that made me cringe," she recalls. "When I asked her to cut up my food for me she said, 'Oh, sure, it'll be good practice for when I have kids!' The takeaway from that I would offer is to always remember that impairments do not make people into infants or children, so please don't refer to us that way. Referring to us like that disables us. Our impairments, whether CP or other, are irrelevant."
This is important for parents of children with disabilities to keep in mind, as automatic and tempting as it may be to help them. I could have waited till Max asked me if he needed a hand with his iPad yesterday morning, or at the very least first asked if he needed assistance before jumping in to do so. This is also key for non-disabled people to consider regarding adults with disabilities. As the authors of the above chapter note, "We must listen to both the verbal and nonverbal messages expressed by someone who may or may not want help. We must use this information to guide our actions and increase our sensitivity. It is often during times that we are hell-bent on helping that we listen least well. We all know stories about people with visual impairments being forcibly 'escorted' over crosswalks by well-meaning pedestrians, what the participants of one study aptly called 'unexpected attacks' of help."
In the afternoon, Max and I put out boxes for recycling. He struggled to hold onto one particularly cumbersome one then dropped it. "Awwwwww!" he said. I said and did nothing. He picked it up again, held onto it for dear life and got it to the curb. Then he grinned at me proudly, one more benefit of letting our children DIY even if they struggle. Our children will never learn independence if we constantly do everything for them—or learn just how capable they can be.
I'll leave you with the memorable words at the end of the chapter:
Every individual is a complex collection of components. Each of us has a variety of interests, skills, capacities and a unique background. We all have different physical physical characteristics, and our own idiosyncratic personalities.
In our interactions with others, we want most to be understood and seen for who we are, and hope that we will not be judged a face value. However, for individuals who have visible disabilities, being judged at face value is precisely what happens most.
When disability is seen as the largest component of a person, much of what is unique and "human" about him or her will be obscured. When needs and deficits are what we see, we only see what that person cannot do.
We will not recognize the diverse contributions of those who wear obscuring labels until we move our focus from the disability and look for the complexity and individuality we take for granted in ourselves. Only getting to know a person in all their multifaceted individuality can cause the "huge" disability to magically shrink and assume its real portion—only one facet of who a person is.