What’s Your Stand-up About?

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(Pictured: Cam and me after his first open mic)

I’m a comedian. I’m also the oldest sister to a 9-year-old boy with Down syndrome. In comedy, we talk about our lives. We have a platform, no matter how tiny, to use as we please. You can use it to talk about your genitalia, rant about things you hate about the world, or share your hilariously keen observations. One observation I had was how strange it was that my little brother was invited to cut to the front of a line of hundreds of families to see Santa Clause one Christmas season. His legs work, he’s capable of waiting, but still one of the elves recognized his disability and escorted us directly to the jolly old man’s lap. We didn’t say no. I did a couple of jokes about how strangers feel sorry for my brother and give him special treatment, so we just started taking advantage of it. I wasn’t always sure how it would be received. I put disabilities in the category of possibly offensive right in there with race, religion and politics. I worked on the jokes, rewrote them, and retold them over and over again in front of different audiences until I felt my position was clear: people with disabilities may have “special needs,” but they’re also just people. I wanted people to relate to my brother and how we find the positive in situations. Unfortunately, not all people see it that way.

My biggest concern was that I was exploiting my brother for comedy. Isn’t this his story? Why should I get laughs from it? But it’s not just his story, it’s mine too. He’s a big part of my life, and a life is made up of experiences, and experiences are how we tell our story. I have the power, albeit a small power, to take our shared experiences and tell our story.

When you do stand-up, you get asked a lot of weird questions, the most common being “what is your stand-up about?” I’ve never been sure how to answer that, and any attempt sounds like a little kid describing how airplanes work. Since making these jokes into bits and telling them to various audiences, I’ve been getting feedback from people. Mostly people who also have a child or sibling with disabilities who understand what I’m talking about. Now that I have them on my side I feel a lot better about it, but I mostly want people who don’t know anyone with disabilities to also be in on the joke.

I could possibly affect real change here. Small examples like how people feel sorry for my brother so they will put his shoes on and tie them. True, you can probably get them on faster than he can, and he’ll be more than happy to let you do it for him. But he also needs to know how to put them on, and to know the feeling of independence when he does it himself. I was talking to a man whose daughter has Autism and he told when they’re out to eat, his daughter will ask for dessert, and even after he tells her no, the person working there might bring her dessert anyway, on the house! They think they’re doing a nice thing by giving a disabled person a cookie. It makes them happy. But what you’re really doing is going against the healthy eating habits and restraint their parents are trying to instill in them for when they’re not around to tell them no.

My little brother was five when I started comedy. It was a sensitive time for my family because he was going to public school for the first time and being incorporated with “normal” kids. We were concerned he would be picked on and not be able to tell us. About once I week I had to talk my mom out of homeschooling him. There were instances of kids picking on him, but more often it would be Cameron who was the aggressor. He didn’t know how to express himself, or wasn’t being understood, so he got his point across by pushing or shoving someone. That’s when I came up with the story “Super Cameron,” and have been reading it to Cam’s homeroom the first week of each new school year. It’s from the perspective of a “normal” child wondering why the kid in their class is different. I read the story and then let the kids ask whatever they want, and I answer as honestly as I can. It’s seemed to help them understand what Down syndrome means and that he can be treated like a normal kid, not a fragile porcelain figurine.

Kids aren’t the only ones who can be bullies, or say hurtful things though. I’ve also had to grow a tough skin in comedy. Obviously we don’t use or condone the “R” word in my family. It’s not like I never said it. I was just as guilty as anyone until it affected me, and I understood what it felt like to have someone I love labeled the “R” word. But in comedy, anything goes. I would go to open mics and have to hear people throw around the word retarded, or hear the punchline of a joke be how someone looked like they have Down syndrome. We all know the short bus jokes or the comparison, “that’s like being the smartest kid with Down syndrome.” It totally pissed me off. I was offended. How dare they say that in my presence? Then a wiser comedian told me I’d have to get over it, so eventually I did. You can’t be offended by just the things that affect you and not everything else. You can’t pick and choose what’s off limits and what’s okay. It’s the same as how a racial joke may not offend me because I’m white, but a sexist joke would piss me off because I’m a woman. It’s all or nothing, baby. If the jokes not funny, eventually that comic will dump it (unless they suck), and if it is funny, then maybe you should learn to laugh at it too.

I’ve even heard of a fellow comedian saying I’m “not funny”, and I “have to use my retard brother to get attention.” Of course it makes me sad, and hope my brother never has to hear words like that. But more than that, I understand it comes from insecurity…or maybe just ignorance. I also understand I won’t be able to change everyone’s minds, but each one I do is a win.

For now, I’m still working on making disabilities funny, and being an advocate for those with disabilities. There are comedians who have disabilities too, and they do a kick ass job. I’ve even started bringing my little brother to family friendly open mics and signing him up. He’s been treated like such a celebrity his whole life, that he feels right at home onstage. Maybe the day will come where he can articulate it himself and I’ll have to go back to jokes about food (my biggest weakness). He’s already done a great job in nine years of showing people how much a person with Down syndrome can do and accomplish. We have a more active social life than most people and like to show it off on Instagram. Until then, I’m happy to tell people what my comedy is about. It’s about my brother and me going through the world like we own the place, taking the good with the bad, and having a killer story to tell at the end of the day.

What’s your stand-up about?

Extra Candy Canes

shit show short stories

My story from That Time of the Month last night.  Thanks so much to Melanie Vare for letting me host and share a story.  This was one of the best groups of storytellers I’ve ever seen!

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It was my sophomore year of college and I was openly crying while calling my mom from outside the elevators in a lobby on campus. I had just learned the Study Abroad office needed $1000 deposit that week or I wasn’t leaving the country (and probably not Kentucky) that summer. She was eerily calm telling me not to worry. We could figure it out. I wailed, “how can you be so calm!? We don’t have $1000!” Her tone remained steady as she softly replied, “I’m pregnant.” I didn’t realize it then, but this was the day I became a different person. I’m the oldest of four. My sister Portia is 6 years younger than me, and my Brother Colton is 7 years younger than her, so maybe I should have seen this coming. She stuck with the formula. Eight years had passed since she’d last given birth and it was time to breed! But I was 20 years old, the age my mom gave birth to me, making her 40. Who has a kid at 40?

I missed most of my mom’s pregnancy, being in college, then Europe, then back to college. I wouldn’t be around to change diapers and put him to sleep, to babysit like I had with my other siblings. I wasn’t even home when she delivered. He came early. Breech. That’s feet first if you don’t understand birthing lingo. I got a voicemail from my aunt one morning that I had a new baby brother. Insert pounds, ounces and inches accordingly. I didn’t understand those measurements either. I planned on finishing classes that week then heading home for the weekend to meet my tiny new brother, Cameron. A name my mom chose from an email of my approved boy names starting with “C”. I didn’t trust her to choose a name after me, Paulina, Portia, and Colton. Just let one of your kids be able to find a keychain with their name on it for Christ sake. The night before I was going to come home, my mom called me crying. This was the first time I’d spoken to her since Cam was born. I’d been communicating through other family members. My heart sank. What was wrong? The woman who remained calm and steady, the family’s rock was completely shaken. She finally revealed to me what she had known for months. Cameron was born with Down Syndrome. I didn’t know anything about Down Syndrome but I just said the first thing that came to mind, “So, what.” That doesn’t change anything. I don’t know what bad news I thought she had, but Down Syndrome seemed so minor compared to everything I had cooked up in my head.

After college I moved back to my hometown and even bought a little house in the same neighborhood as my parents. Something 18-year-old me would sneer at. It felt almost like I was living back home. I was broke so I ate dinner with my family every night and mooched off their wifi and cable. Of course living in a small town there was a rumor going around that my mom had only pretended to be pregnant while I secretly gave birth to Cameron and passed him off as a sibling. We weren’t living a plot from Desperate Housewives, so we just let people think what they wanted. People in public always assume I’m his mother. I guess the ages do work out better. Anytime someone looks at Cam and then refers to my mom as “Grandma” I just like to step back and watch them dig their own graves as she firmly corrects them. “No, I’m his mother. They’re both my children.” That’s when they usually start looking around for the hidden cameras. Sidebar, don’t assume every caregiver is a parent. They could be a relative, friend, nanny, or even a kidnapper. Don’t assume!

The summer I moved back home was also the summer Cam had open heart surgery. It’s common for people with Down Syndrome to be born with holes in their heart. Cam was no exception. He’d been taking medication for it since birth, but at 18 months the doctors felt he was strong enough to have his ribs cracked open and the holes and valves repaired. I think that was when I truly bonded to him. There were complications and times when all we could do was hope and pray, but he came out of it a different kid. He had more energy than ever before and he’s proud to show off the now white scar down his chest.

Since then I’ve moved to Nashville, only an hour away. Cam stays with me on weekends where he has laid claim to the guest room as his own personal space.

People feel completely comfortable asking if he’s adopted of if we have the same parents. It’s none of their business, but I think you can look at us and tell. Few people have blonde hair, blue eyes, freckles, and a nose you can barely stick a pinky finger in. Seriously, I can barely wear glasses. The oddest thing is the look of pity people have in their eyes when they see you with a child with Down syndrome. Cam does not want anyone to feel sorry for him. The truth is he’s got a pretty sweet life. Probably better than yours. Once my mom asked me, “Do you think Cameron knows he’s different?” I replied, “Yes. I think he thinks he’s a celebrity.” He doesn’t see himself as an outsider, but more likely above everyone else. How could he not? He’s been given special treatment his entire life. Some needed and deserved and other times it was just a perk.

The day I realized just how much special treatment he received was when I took him to meet Santa at Bass Pro Shop one Christmas Season. Anyone who has been to Opry Mills in December knows it’s a chaotic nightmare, but somehow offering free photos with Santa brought people from all over Middle Tennessee. We walked in, saw the line wrapped around the inner perimeter of the megastore, and said, “Well, maybe there’s another less popular Santa we can talk to at KMART.” We walked back out of the store when a young female elf chased us down and said, “Wait! Did you get to see Santa?” “No” I replied, “The line was too long.” She got a spritely twinkle in her eye and said, “That’s ok, because special boys and girls get to go to the front of the line!” That changed everything. She escorted us past screaming kids and exhausted parents to the front of the line. We marched right up in front of people who had been waiting days I presumed. Cam plopped onto Santa’s lap and had a chat about what he wanted, then Santa proceeded to give him TWO candy canes. I heard a kid behind us whine, “Why does he get two candy canes?” I whipped my head around and spouted, “Extra chromosomes equals extra candy canes.” Okay, I didn’t say that, but how cool would it be if I had? After that we were drunk with power. We went to Chuy’s for dinner and were beyond distressed when they informed us it would be an hour wait. I guess you can’t win ‘em all.

Personally I never want kids. Cam will always need me in some form or fashion and I’ll always need him. My mom says if I did have a baby that Cam wouldn’t let me keep it anyway. I already forced my mom to make me his legal guardian. The thing I have learned the most from Cam and the way people treat him is that we shouldn’t treat kids with special needs so special. We should treat all kids that way. In fact, treat everyone in your life that way. Check on them, ask if they need help, encourage them to set and accomplish new goals, but most of all treat them with kindness.