sibling perspective:Perfectly Human: My Brother by Jenni Newbury

[Guest guest]

Perfectly Human: My Brother by Jenni Newbury

 

Jenni Newbury writes about life with a younger brother with Down syndrome. I don't remember life before 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 across our tile

floor to hear him giggle, sitting together on the couch as we went on an

imaginary trip with my dolls, and running alongside him the very first time he

rode a two-wheel bicycle. There are other memories as well: visiting doctor's

offices, watching therapists come in and out of our house, and constantly

translating 's developing speech to others. The memories meld together,

not one more specific than another, not one less " normal " than another.

The first time I remember defining Down Syndrome was when my

parents and I gave a presentation to 's fourth grade class. We knew his

peers were asking questions and felt if we could explain some details, they

would be more accepting as they got older. They were, at times - but not

always. As a big sister I defended my brother when others took advantage of him

or teased him. Many times didn't even notice, but I felt it was my

responsibility to guard his dignity.

As we grew up, I worked to create new ways for to be

included. In high school I created a club that hosted social opportunities for

students with and without disabilities. I co-founded Camp PALS, a weeklong

sleep away camp for young adults with Down Syndrome. In college, I founded

Princeton Disability Awareness and hosted an annual Down Syndrome Conference

for children with Down Syndrome, their siblings and families. Through each of

these programs, I worked to bring others into the world where I lived, and

provide them with the experience of knowing someone with Down Syndrome. 

For many who have never met someone with Down Syndrome, it

might be difficult to imagine how much can be gained from someone with a

disability, someone who--by society's standards--is lacking. People with Down

Syndrome are burdened by many stereotypes--most degrading, if not

offensive.  None of them come to

mind when I think . Through , I have learned what it means to be

strong, courageous, sincere, and honest. has shown me how to forgive others,

how to experience joy in the smallest of moments, and how to love radically.

After graduating Princeton, I found a new home working for

Special Olympics. Their mission challenges and inspires me every day, but the

real honor is working for an organization that has directly enhanced 's

life. Beyond sport, which has provided with many opportunities, Special

Olympics has taught him about advocacy.

Over the past two years, has developed a new hero--his

name is Tim Shriver. Although not completely lacking in superhuman powers, Tim

became 's hero for a simple reason: he gave a voice. When

spoke, Tim listened. When attended a meeting, Tim asked for his insight.

When was by himself, Tim joined him. Through this simple acceptance,

these acts of inclusion, and this demonstration that he valued , Tim

transformed 's world and empowered him to begin reaching his full

potential. Tim represents only a small example of the power that a movement

like Special Olympics brings with it. A power that, to no one's surprise, started

with the passion and determination of a sibling.

So why does this matter? As a sibling of someone with Down

Syndrome, the question I am asked most often is the following: Would you change

it if you could? If you could separate from his diagnosis of Down

Syndrome, would you take away the disability?

Looking back, I consider the many ways I've worked to make

included, to have people see his value. The common theme is that I've

never once considered changing . I try to give others new experiences,

transform people's misconceptions and re-direct their expectations. Like a

recent Special Olympics advertisement I read, my goal has been to make others

rethink, to consider " truth without judgment, love without boundaries, respect

without requirements. " If I am eliminating a disability, the disability is not

in --it's in the world.

So what is it like to have a sibling with Down Syndrome? It

is an honor. 's life is nothing short of a gift, and his presence in mine

is one of God's greatest blessings.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 Camp PALS.

Since Jenni graduated from Princeton and left home in New Jersey, she and have been adjusting to the new distance between them - but she

is hoping to eventually convince to move down to DC.Read more: http://blog.beliefnet.com/thinplaces/perfectly-human/#ixzz10g4li1ns