Jessie Flips: About Glee and the R-Word

Glee as Loser is right!

Last night I watched Glee with my family in the playroom in our central house in Old Ottawa South. And in this specific episode Finn Hudson said the R-word and I got so mad and really sad because I looked up to Finn as well as the actor Cory Monteith. He should NOT have said that. That word is a word that is hurtful, mean, rude and most importantly really Offensive to people who have Down syndrome just like me. How could the writers do something like this? I can’t believe they would they script that line. I think the writers should know that this word, the  R word hurts people’s feelings, the R word is a word that is harmful. It discriminates people with Down syndrome and I hate it.

The show is about inclusion, the show is about celebrating who we are even though we’re different.  The show is about diversity and creativity. And then they use the R word. Come on writers!! Can’t you see that people who have Down syndrome are people too, can’t you see that we also have a voice. Can’t you see that we ALL have the right to be included. 

Channeling the Power

Jessie has had, and continues to have, a variety of goals for her future. While there is an underlying current that relates to the arts and performance, the flavours of the month day rival, in range and creativity, those on offer by the Baskin Robbins ice cream chain.

Generally her identified passion and career choice derives from whatever movie/TV show she has just watched. From Spy Kids (a spy, of course) to Harry Potter (a wizard) to Little Women (a writer, complete with oil lamp), to Bring it On (a cheerleader), to the Jonas Brothers (a lyricist), to Glee (this one is a little more convoluted and involves travelling to LA with Dan /Dad where he gets a job as a scriptwriter on Glee and writes her into the script so that there are TWO actors with Down syndrome and she is the new love interest for Finn).

As she has matured (sic) and moved into a life phase where she is expected to be a little bit more reality-based in her choices, she often states that her desire is to act, advocate, and/or dance. All things she has had some experience and success with; all things that she has figured out that we have a more positive response to (i.e., it does not precipitate parental eye-rolling or large exasperated sighs).

Of course she continues to throw us loops—such as a consistent urge to follow her passion: her music career. (Hmmmm, where is that chromosome related to singing on key? Certainly not on the 21st you say?) Or a more recent desire to give up dancing professionally (which she does, dance professionally that is, with Propeller Dance) so she can spend more time with Drummer Boy, her boyfriend, and they can work on their combined music careers (he is also considering a career playing with the National Hockey League, so they are not 100% sure about the music thing. )

This week however, I’m glad to see that all our discussions about talent, passion, reality, and the 10,000 hour rule are really paying off! She and some friends went to see X-Men on Monday and I got this text:

I wonder if our college savings will cover it?

Glee, Cranberry, and Creativity

Last night Jessie and I treated ourselves to dinner in front of the TV. Inveterate Gleeks (fans of the TV show Glee) she missed last week’s finale because she had a Down Syndrome Association board meeting (she is co-chair) and Dan recorded it for her. This is the wind-down week of Storefront and Jessie just goes directly to her work placement at a Dollar store in the morning and then comes straight home for the afternoon.

Storefront is a two-year program that focuses on skills for independence and is our first foray into a specialized program … all of Jessie’s school life was spent in a regular classroom, fully included, and that is a whole other story! Which I will try to tell at some other point, but I am still in the recovery phase and my therapist says repression has its uses. Just to clarify: I am a full, active, and slightly rabid supporter of inclusive schools, and that was the problem. While those were some of the best years of our lives, they were also some of the worst—I have both the biker jacket (Mom from Hell) and the scars to prove it. Jessie, tho, seems to have survived and thrived.

So, as a kind of last week celebration we have not entered into our summer routine (because I haven’t invented it yet) and we’ve told Jess that it will be an easy week with few expectations or demands. Hence, TV in the middle of the week (normally there is no TV during the week). Her only task was to set the table. My only task was to figure out how to work the DVD recorder (Dan wrote down instructions for me). I wasn’t too worried about her reaction to New Directions (the name of the Glee club in the TV show, for those of you not yet addicted) not winning the Regionals (I admit, I watched it last week while she was at the meeting) because she already heard the plot from another Gleek at Dandelion. That saved us one meltdown.

You see, while Jessie knows that TV is scripted, written, and acted, like all good soap opera and other viewers, she invests a huge amount of emotional energy into the characters and the plots. Hence why we limit TV! (want her to save some of that energy for what I call “real” relationships).

So we had our plates full of chicken, beans, rice salad, and cranberry sauce and we turned the show on. Now Jessie is not the neatest of eaters. Put food and TV together and you have a reason to purchase a heavy-duty front loader (which we did). And she managed to get cranberry sauce all over her new grey University of Calgary sweats (her trip souvenir from the DanceAbility workshop with MoMo in Calgary, Alberta).

As Jessie does all her own laundry—I gave up trying to keep up with her 10-times daily change of clothes—she was devastated. I told her that if she took them off right after the show (she was obviously not devastated enough to pause the show and deal with it) and soaked them in cold water and put stain stick on it, then the stain would probably come out—ah yes, teaching moments.

She did take them off after the show. But this morning, on my way down to the basement to meditate, I noticed that she had just left them lying on the stairs. “Jess. Your pants are here and you didn’t soak them or put stain stick on. The stain might not come out.” “That’s okay,” she says blithely, “It's creative!”

It’s creative? Not the response I was looking for. And then I remember: to Jessie, every moment has the potential to be a Glee moment—where people sing and dance their way through mishaps, mistakes, and the angst of adolescence. Where creativity is the reigning value and if you slip up—on the job, with a chore, even in trying to zip up your winter coat—it can all be righted by calling it “creative” and you can move on to the next scene. Because just around the corner, there might, just might, be a parade or a stage or a leading man waiting to provide that happy ending that we all deserve. Where moms don’t rag on you and friends always call and teachers just tell you you’re brilliant and no one asks you to change anything about yourself and, of course, the lyricist has written just the right song for the moment. And nowhere in the chorus or the verses is there any reference to stain stick!