{"id":375,"date":"2010-09-22T13:23:12","date_gmt":"2010-09-22T13:23:12","guid":{"rendered":"http:\/\/blog.beliefnet.com\/thinplaces\/2010\/09\/perfectly-human-my-brother-jason-by-jenni-newbury.html"},"modified":"2010-09-22T13:23:12","modified_gmt":"2010-09-22T13:23:12","slug":"perfectly-human-my-brother-jason-by-jenni-newbury","status":"publish","type":"post","link":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/09\/perfectly-human-my-brother-jason-by-jenni-newbury.html","title":{"rendered":"Perfectly Human: My Brother Jason by Jenni Newbury"},"content":{"rendered":"


\n\"Jenni<\/a><\/span><\/p>\n

Jenni Newbury writes about life with a younger brother with Down syndrome. <\/i><\/p>\n

I don’t remember life before Jason was born. I imagine I
\nenjoyed my two years as an only child, but I simply have no recollection of
\nlife without him. The memories I do have include:pulling Jason across our tile
\nfloor to hear him giggle, sitting together on the couch as we went on an
\nimaginary trip with my dolls, and running alongside him the very first time he
\nrode a two-wheel bicycle. There are other memories as well: visiting doctor’s
\noffices, watching therapists come in and out of our house, and constantly
\ntranslating Jason’s developing speech to others. The memories meld together,
\nnot one more specific than another, not one less “normal” than another.<\/p>\n

The first time I remember defining Down Syndrome was when my
\nparents and I gave a presentation to Jason’s fourth grade class. We knew his
\npeers were asking questions and felt if we could explain some details, they
\nwould be more accepting as they got older. They were, at times – but not
\nalways. As a big sister I defended my brother when others took advantage of him
\nor teased him. Many times Jason didn’t even notice, but I felt it was my
\nresponsibility to guard his dignity.<\/p>\n

As we grew up, I worked to create new ways for Jason to be
\nincluded. In high school I created a club that hosted social opportunities for
\nstudents with and without disabilities. I co-founded Camp PALS<\/a>, a weeklong
\nsleep away camp for young adults with Down Syndrome. In college, I founded
\nPrinceton Disability Awareness<\/a> and hosted an annual Down Syndrome Conference
\nfor children with Down Syndrome, their siblings and families. Through each of
\nthese programs, I worked to bring others into the world where I lived, and
\nprovide them with the experience of knowing someone with Down Syndrome. <\/p>\n

For many who have never met someone with Down Syndrome, it
\nmight be difficult to imagine how much can be gained from someone with a
\ndisability, someone who–by society’s standards–is lacking. People with Down
\nSyndrome are burdened by many stereotypes–most degrading, if not
\noffensive.  <\/span>None of them come to
\nmind when I think Jason. Through Jason, I have learned what it means to be
\nstrong, courageous, sincere, and honest. Jason has shown me how to forgive others,
\nhow to experience joy in the smallest of moments, and how to love radically.<\/p>\n

After graduating Princeton, I found a new home working for
\nSpecial Olympics<\/a>. Their mission challenges and inspires me every day, but the
\nreal honor is working for an organization that has directly enhanced Jason’s
\nlife. Beyond sport, which has provided Jason with many opportunities, Special
\nOlympics has taught him about advocacy.<\/p>\n

Over the past two years, Jason has developed a new hero–his
\nname is Tim Shriver. Although not completely lacking in superhuman powers, Tim
\nbecame Jason’s hero for a simple reason: he gave Jason a voice. When Jason
\nspoke, Tim listened. When Jason attended a meeting, Tim asked for his insight.
\nWhen Jason was by himself, Tim joined him. Through this simple acceptance,
\nthese acts of inclusion, and this demonstration that he valued Jason, Tim
\ntransformed Jason’s world and empowered him to begin reaching his full
\npotential. Tim represents only a small example of the power that a movement
\nlike Special Olympics brings with it. A power that, to no one’s surprise, started
\nwith the passion and determination of a sibling.<\/p>\n

So why does this matter? As a sibling of someone with Down
\nSyndrome, the question I am asked most often is the following: Would you change
\nit if you could? If you could separate Jason from his diagnosis of Down
\nSyndrome, would you take away the disability?<\/p>\n

Looking back, I consider the many ways I’ve worked to make
\nJason included, to have people see his value. The common theme is that I’ve
\nnever once considered changing Jason. I try to give others new experiences,
\ntransform people’s misconceptions and re-direct their expectations. Like a
\nrecent Special Olympics advertisement I read, my goal has been to make others
\nrethink, to consider “truth without judgment, love without boundaries, respect
\nwithout requirements.” If I am eliminating a disability, the disability is not
\nin Jason–it’s in the world.<\/p>\n

So what is it like to have a sibling with Down Syndrome? It
\nis an honor. Jason’s life is nothing short of a gift, and his presence in mine
\nis one of God’s greatest blessings.<\/p>\n

Jenni Newbury currently resides in Washington, DC where she works for Special Olympics Project UNIFY as the Curriculum and Education Resource Manager. Most of her free time is spent working on the growth and expansion of <\/i><\/span>Camp PALS<\/i><\/a><\/span>. Since Jenni graduated from Princeton and left home in New Jersey, she and Jason have been adjusting to the new distance between them – but she is hoping to eventually convince Jason to move down to DC.<\/i><\/span><\/p>\n

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

Jenni Newbury writes about life with a younger brother with Down syndrome.  I don’t remember life before Jason was born. I imagine I enjoyed my two years as an only child, but I simply have no recollection of life without him. The memories I do have include:pulling Jason across our tile floor to hear him…<\/p>\n","protected":false},"author":88,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7,1,8],"tags":[],"class_list":["post-375","post","type-post","status-publish","format-standard","hentry","category-disability","category-down-syndrome","category-perfectly-human"],"yoast_head":"\nPerfectly Human: My Brother Jason by Jenni Newbury - Thin Places<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/09\/perfectly-human-my-brother-jason-by-jenni-newbury.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Perfectly Human: My Brother Jason by Jenni Newbury - Thin Places\" \/>\n<meta property=\"og:description\" content=\"Jenni Newbury writes about life with a younger brother with Down syndrome.  I don’t remember life before Jason was born. I imagine I enjoyed my two years as an only child, but I simply have no recollection of life without him. The memories I do have include:pulling Jason across our tile floor to hear him…\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/09\/perfectly-human-my-brother-jason-by-jenni-newbury.html\" \/>\n<meta property=\"og:site_name\" content=\"Thin Places\" \/>\n<meta property=\"article:published_time\" content=\"2010-09-22T13:23:12+00:00\" \/>\n<meta name=\"author\" content=\"amyjuliabecker\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Perfectly Human: My Brother Jason by Jenni Newbury - Thin Places","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/09\/perfectly-human-my-brother-jason-by-jenni-newbury.html","og_locale":"en_US","og_type":"article","og_title":"Perfectly Human: My Brother Jason by Jenni Newbury - Thin Places","og_description":"Jenni Newbury writes about life with a younger brother with Down syndrome.  I don’t remember life before Jason was born. I imagine I enjoyed my two years as an only child, but I simply have no recollection of life without him. The memories I do have include:pulling Jason across our tile floor to hear him…","og_url":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/09\/perfectly-human-my-brother-jason-by-jenni-newbury.html","og_site_name":"Thin Places","article_published_time":"2010-09-22T13:23:12+00:00","author":"amyjuliabecker","twitter_card":"summary_large_image","schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/09\/perfectly-human-my-brother-jason-by-jenni-newbury.html","url":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/09\/perfectly-human-my-brother-jason-by-jenni-newbury.html","name":"Perfectly Human: My Brother Jason by Jenni Newbury - Thin Places","isPartOf":{"@id":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/#website"},"datePublished":"2010-09-22T13:23:12+00:00","dateModified":"2010-09-22T13:23:12+00:00","author":{"@id":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/#\/schema\/person\/4dde10eee38770361dc9b46a9413776b"},"breadcrumb":{"@id":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/09\/perfectly-human-my-brother-jason-by-jenni-newbury.html#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/09\/perfectly-human-my-brother-jason-by-jenni-newbury.html"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/09\/perfectly-human-my-brother-jason-by-jenni-newbury.html#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.beliefnet.com\/columnists\/thinplaces"},{"@type":"ListItem","position":2,"name":"Perfectly Human: My Brother Jason by Jenni Newbury"}]},{"@type":"WebSite","@id":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/#website","url":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/","name":"Thin Places","description":"Amy Julia Becker on Faith, Family, and Disability","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-US"},{"@type":"Person","@id":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/#\/schema\/person\/4dde10eee38770361dc9b46a9413776b","name":"amyjuliabecker","image":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/#\/schema\/person\/image\/","url":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-content\/wphb-cache\/gravatar\/222\/2222023dcae76abe6e896a3cf80e9836x96.jpg","contentUrl":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-content\/wphb-cache\/gravatar\/222\/2222023dcae76abe6e896a3cf80e9836x96.jpg","caption":"amyjuliabecker"},"description":"Amy Julia Becker writes about theology, disability, family, and culture. Two major life experiences have shaped her writing and her faith\u00e2\u20ac\u201dcaring for her mother-in-law as she battled cancer and welcoming her daughter Penny into the world after she was diagnosed at birth with Down syndrome. Both experiences expanded and enriched her understanding of what it means to be human and to receive each and every person as a gift.\u00c2\u00a0 A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, and the forthcoming A Good and Perfect Gift (Bethany House). 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\/375","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=375"}],"version-history":[{"count":0,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/375\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/media?parent=375"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/categories?post=375"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/tags?post=375"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}