You know, I’m really having a hard time starting this post. I don’t know why I’m stuck here, staring at this Word document, watching as my fingers move and the words appear on the screen.
That’s actually a lie. I know why.
Let me tell you a story. Not a lot of people know this, and why should they, as it rarely comes up in conversation, but I have a sister with Down Syndrome. Her name is Sarah, she’s 26 years old, she’s about…5 feet tall and she loves the color pink.
Monday through Friday, my mom wakes up at about 5 a.m. to get Sarah ready for work, and takes her to the bus stop which goes to the local training center. Sarah works there until about 3:30, and comes home on the same bus which arrives at about 4:15, but a little earlier on Fridays.
We pick her up at the bus stop with a bagel – a bagel with cream cheese and green olives, because that’s her favorite – and take her home. Sarah loves to listen to the radio on the drive home. Actually, she loves music in general. But on the ride home, my mom will ask her how work was, and she’ll usually say “Fine,” or “just great.” When they get home, Sarah excitedly greets our two cocker spaniels, Ruby and Lilly, and gets out the Cheerios, which Sarah likes to snack on. First, she pours a little for Ruby and Lilly, and then Sarah climbs the stairs to her room to watch a little TV before dinner.
I don’t think any differently when I’m out with Sarah, but I know others do. She was born different, and people have been treating her differently all of her life.
For example, I remember in first grade hearing someone make fun of my sister on the bus. Some kid, I don’t remember who he was or what he looked like, was calling her stupid right to her face. I was enraged, as I was protective of my sister. Needless to say, I made sure it didn’t happen again.
When it comes to my parents, their priority with Sarah is to give her the best life they can, just like any parent would do for their child. But there’s a reason why Sarah owns every “Now That’s What I Call Music” CD ever made, and there’s a reason why her room is literally covered in pink from floor to ceiling (and, true story, because of her pink curtains, her room glows in a vibrant shade of fuchsia visible from the street at night). My family wants to give her everything we can, all the while knowing there’s things we can’t possibly give: the experiences she would have on her own.
Experiences are priceless; experiences are things you’re included in. But it’s incredibly difficult to get people to include your disabled child or, in my case, sister. We do everything we can: Sarah has a job, she participates in Special Olympics and we always sign her up for the latest YMCA trip for special needs. But that certainly doesn’t make up for everything she won’t be able to participate in, or the milestones in life she won’t be able to reach.
Sarah has been on my mind a lot today, and it’s all because of an e-mail I received. Tomorrow at Memorial Union, the documentary “Including Samuel” will be screened. It tells the story about a father, Dan Habib, who attempts to include his son, Samuel, who was diagnosed with cerebral palsy, in everything possible. In addition to Samuel’s story, the film tells the story of four other families who also hope to include their disabled child.
Although I hate the phrase, inclusion really is something people “take for granted.” We all get to live our lives without much regard for how special that really is. When it comes down to it, it’s up to us to make sure everyone can be included. I know I do with my sister.
“Including Samuel” will be playing at Memorial Union tomorrow at 5 p.m. A discussion with Dan Habib will follow the screening.To learn more about the film, click here.
