{"id":305,"date":"2010-07-21T13:32:53","date_gmt":"2010-07-21T13:32:53","guid":{"rendered":"http:\/\/blog.beliefnet.com\/thinplaces\/2010\/07\/perfectly-human-can-you-see-me-by-ellen-painter-dollar.html"},"modified":"2010-07-21T13:32:53","modified_gmt":"2010-07-21T13:32:53","slug":"perfectly-human-can-you-see-me-by-ellen-painter-dollar","status":"publish","type":"post","link":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/07\/perfectly-human-can-you-see-me-by-ellen-painter-dollar.html","title":{"rendered":"Perfectly Human**: Can You See Me? by Ellen Painter Dollar"},"content":{"rendered":"

<\/p>\n

Ellen Painter Dollar is a
\nwriter whose work focuses on faith, parenthood and disability. She is writing a
\nbook on the ethics and theology of reproductive technology, genetic screening
\nand disability, and she blogs at <\/font><\/span><\/i>Choices That Matter
\n<\/font><\/span><\/i><\/a>and <\/font><\/span><\/i>Five Dollars and Some Common Sense<\/font><\/span><\/i><\/a>.<\/font><\/span><\/i><\/span><\/p>\n

 <\/span><\/p>\n

 <\/span><\/p>\n

\"ellendollar.jpg\"<\/a><\/span><\/p>\n

A few weeks ago,
\nwhen we were leaving my kids’ school fair, a girl in front of us turned around
\nand walked backward toward her family’s car so she could keep her eyes glued on
\nme. Because I have a genetic bone disorder called osteogenesis imperfecta (OI,
\nalso known as “brittle bone disorder”), I’m short, crooked, scarred, and walk
\nwith a limp.  I realize I don’t look like your average suburban mom, but I
\nwill never get used to being assaulted by stares.<\/span><\/p>\n

 <\/span><\/p>\n

Some years ago, my
\nhusband and I were hiking in Yosemite National Park. A muscular hiker-dude drew
\nalongside us and gushed, “Wow, I really admire you for doing this!” before
\nleaving us in his dust. He meant it as a compliment, I know, but here’s what I
\nheard: “You look like you’re having such a hard time, and it’s so obvious that
\nthere’s something wrong with you that I decided to bestow some encouragement
\nupon you. You’re welcome.”<\/span><\/p>\n

 <\/span><\/p>\n

My daughter also has
\nOI, and when she is recovering from a fracture, strangers who notice her cast
\nwill often start telling us about their own broken-bone travails–how it will be
\nbetter before you know it, how bad the cast smelled when it came off, how upsetting
\nit was to sit on the sidelines during soccer games. I smile and bite my tongue,
\nbecause this is really not<\/i> the same as little Johnny breaking his wrist
\nfalling off his skateboard. Our fractures happen frequently, unexpectedly, and
\nas a result of the most ridiculous, mundane scenarios (sitting down in an
\nawkward position, slipping on a piece of paper). When I first tell a new
\nacquaintance about our bone disorder, they sometimes ask whether drinking more
\nmilk might help–as if it has never occurred to me, during four decades of
\nhaving this disorder and a decade of parenting a child with it, that following
\nFDA guidelines on calcium intake will solve all of our problems.<\/span><\/p>\n

 <\/span><\/p>\n

Why do these
\ninteractions with strangers bother me so much? Am I just prickly and easily
\noffended? Do I perceive my disability as something shameful, not suitable for
\npublic conversation? Not at all. In fact, I have made a career out of educating
\npeople about OI and sharing my experiences. Before having kids, I was the
\ncommunications director for the national OI Foundation, and now that I am a
\nfreelance writer, living and parenting with OI are central topics. I love
\ntalking and writing about OI. And sometimes, I welcome strangers’ responses to
\nmy disability.<\/span><\/p>\n

 <\/span><\/p>\n

I swim regularly at
\nour local pool, and one day last year, a man came over and asked if he could
\nuse my lane once I was done. As I gathered up my things, he said, “May I ask
\nwhy you have all of those scars on your legs?” I told him about OI, my broken
\nbones and many surgeries. He observed that swimming must be great exercise for
\nme (it is), and then we said good-bye.<\/span><\/p>\n

 <\/span><\/p>\n

Here’s the
\ndifference between the public interactions that I loathe and the poolside
\nconversation that I welcomed: With the former, people respond to me as a set of
\nphysical traits rather than a person. The staring children see only the scars
\nand limp, instead of seeing a mother and authority figure toward whom children
\nshould not behave rudely. The admirers decide I am worthy of praise based
\nsolely on my outward appearance; admiring me for my disability makes about as
\nmuch sense as admiring a beautiful woman because she is beautiful. The advice
\ngivers define me as a problem in need of fixing.<\/span><\/p>\n

 <\/span><\/p>\n

My fellow swimmer,
\nhowever, responded to me as a person rather than a set of symptoms. Rather than
\ndefining me as a freak, a role model, or someone in need of help, he asked me
\nto define myself. He did not simply notice me. He saw me.<\/span><\/p>\n

 <\/span><\/p>\n

Jesus gathered
\naround him those who were defined and treated according to their most obvious
\noutward traits–tax collectors, people with physical and mental illness, women,
\nchildren. I feel a special affinity for Zacchaeus, who was not only an abhorred
\ntax collector, but was also short (like me) and probably used to being
\noverlooked in crowds. (I am regularly mystified by the unthinking confidence
\nwith which regular-sized, physically able people throw their bodies around.
\nThey careen around corners, gesticulate wildly, walk with eyes glued to their
\nBlackberrys, confidently step backward–all without thinking that there might
\nactually be a person, smaller than them, in the space they so blithely occupy.)
\nJesus did not merely notice Zacchaeus. He saw him, ate dinner with him, and
\ninvited him to try a new way of living.<\/span><\/p>\n

 <\/span><\/p>\n

When the crowds
\nbalked at Jesus’ eating with Zacchaeus, Jesus replied that, “The Son of Man has
\ncome to seek and to save what was lost.” (Luke 19:10) What bothers me most
\nabout staring, admiring, advice-giving strangers is that ironically (given that
\nI am the focus of their unwanted attention), they make me feel lost. They make
\nme feel that I<\/i> don’t exist, that I am merely a jumble of broken bones,
\nscars, crookedness, and pain.<\/span><\/p>\n

 <\/span><\/p>\n

The physical
\nconsequences of my OI are pretty hard to miss. I do not fault people for
\nnoticing and wondering about them. But I appreciate those who move beyond
\nnoticing my disabled body to see the person who inhabits it.<\/span><\/p>\n

 <\/span><\/p>\n

**For an explanation of the title “Perfectly Human,” and to read the first entry in this series, click here<\/a>. <\/span><\/p>\n

To read all the entries in the series, type “Perfectly Human” into the search box in the upper right. <\/p>\n

<\/span><\/span><\/p>\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

Ellen Painter Dollar is a writer whose work focuses on faith, parenthood and disability. 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Her essays have appeared in First Things, The Philadelphia Inquirer, The Christian Century, ChristianityToday.com, and Bloom, among other online venues.","sameAs":["http:\/\/amyjuliabecker.com"],"url":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/author\/amyjuliabecker"}]}},"_links":{"self":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/305","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/users\/88"}],"replies":[{"embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/comments?post=305"}],"version-history":[{"count":0,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/305\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/media?parent=305"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/categories?post=305"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/tags?post=305"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}