Excluding Alex

Alex and I have a couple of things in common. We’re both Gleeks (fans of the Fox network television show Glee) and we both use wheelchairs. Alex currently sings in his middle school choir. I sang in choir until I graduated high school… not that long ago. I still sing when no one’s around, but I promise to spare you the experience.

For all our commonalities, Alex and I have some differences too. Alex was born 12 years ago with cerebral palsy; he’s always known a world where disability was a fact. I was paralyzed 7 years ago at the age of I’m-not-telling and I’m still learning my way around. Alex is still fresh and hopeful. I ‘m a long-jaded cynic.

Alex sees something of himself in able-bodied actor Kevin McHale’s character Artie as he sings and dances with his Glee cast-mates on television. Show creators, Ian Brennan, Ryan Murphy and Brad Falchuk created a world where everything is better when the New Directions Show Choir takes the stage. A world where every member of the choir thrives and sometimes survives through musical expression. Who wouldn’t want to be part of that?

But Will Schuester doesn’t direct Alex’s choir and Brennan, Murphy and Falchuk aren’t there to craft a heartwarming finale as Alex takes the stage to spin and wheelie expertly through a soaring solo expressing his personal triumph.

This photo isn’t staged. This is Alex’s big choral performance right before Spring Break. That is his choir performing at a competition whilst Alex is heart-breakingly segregated so far away.

Before the performance, the students were all bunched there on the side where Alex is sitting and they dutifully filed onto the risers as directed by Mr. Grevstead, their choir director. Alex was still waiting to be directed into place when the performance began with him sitting right there, some twenty feet away. Mr. Grevstead is no Will Schuester.  

I understand Alex sang his heart out even though none of those microphones were close enough to pick it up. I don’t know that I would have had that much poise at 12 years old.

I remember how much it sucked to be the last kid picked for dodge ball or getting stuck at the “kids’ table” for Thanksgiving.  I can’t imagine how it felt to be Alex in that moment.  

Every maternal fiber within me compounded by every indignity I’ve experienced as a wheeler wells up in me when I look at this photo –so much emotion that it chokes off my voice and leaves only stinging tears and a belly roiling with outrage.

After the performance, Mr. Grevstead, the choir director apologized for the “inadvertent error.” In my mind an “inadvertent error” is forgetting the rolls in the oven and sitting down to Sunday dinner while they burn.  How do you “inadvertently” forget a child?

How do you give Alex that big moment back? The one he practiced for all school year? The one that’s supposed to feel good but turned into this? During the audience applause, the choir director presented the choir — gesturing to the children directly in front of him standing on those risers with no acknowledgement of Alex.

This isn’t the first time Alex has faced inclusion barriers with his choir. During the Christmas performance, Alex was placed behind the piano accompanist where the potted plant usually sits. Alex was so hidden that Arla, his mother, couldn’t see her boy perform.

When my own son was young enough to be involved in school performances, I would hold my breath so that my breathing didn’t mask a single sound he made, tears of pride and love streaming down my cheeks.  His first words after a performance would inevitably be “Did you see me Mom?” My cue to lavish praise.  I wonder how Arla answered when Alex asked.

Alex’s picture has haunted me. That single image quietly but so powerfully says what I’ve been trying to express for some time. Except my own sense of injustice and hurt and frustration makes my voice in this matter too shrill to be heard. This seminal photo says more about the segregation of people with disabilities than all the words I’ve ever tried to write about it.

In ways large and small this happens every day to people with disabilities.

Ten years… TEN YEARS before Alex was even born, the Americans with Disabilities Act became law and with it we pledged as a nation to correct these things. Segregation of people with disabilities was supposed to be a historical footnote by the time Alex was born. But, 22 years post-ADA the barriers are still there and seem to be increasing. 

Alex is 12. He should expect to grow up to be a quarterback, a firefighter, a superspy and king; all at the same time. At that age, he shouldn’t be aware of barriers. He shouldn’t have to understand acronyms like ADA, IDEA and IEP – the alphabet soup of “special” education and disability. He shouldn’t have to advocate for his most basic civil rights; his most basic human rights.  

Instead of seamless inclusion, he’s facing more segregation with adulthood. As a young man, he’s going to encounter moments when observers mistake his romantic partner for his caretaker; where cashiers and wait staff will expect his companions to make his decisions. He’ll be judged sometimes not by the content of his character but by the wheels under his butt. He’ll have to find ways to maintain his dignity and autonomy when he’s the only one who cannot reach or cannot participate fully because he uses a wheelchair.

I haven’t fully figured that one out yet for myself. I grow tired of giving others my proxy because I am unable to access life. I’m not looking for preferential treatment. I’m just hoping for a fighting chance to participate fully in life with dignity.

There are lessons I do not want Alex – or anyone to have to face. Inaccessibility is painful; I’ve lost count in how many times I’ve broken my knuckles on a tight squeeze. It’s humiliating; like being the only adult at a business conference who has to find someone to “take you potty” because you can’t open the doors.

I’m weary of the list of places I cannot go without Herculean effort because I use a wheelchair. Or the casual “We’ll just find a couple of cuties to carry you.” Puhleez, I am an adult woman. I will consent to be carried in two scenarios; the first involves emergency sirens, smoke-choked air and blind panic, the other involves candlelight, flowers, steamy jazz and my half-naked new husband, George Clooney gazing longingly into my eyes.

I believe those who are currently able bodied are every bit as ill-informed as I was pre-injury. Until you live it, you don’t get it. In my darkest, recovering-Catholic-guilty-for-everything moments I wonder if the indignities of exclusion I experience are a penance for my pre-injury naive outlook on accommodating the people I knew with disabilities.

I also believe with understanding you too will become an advocate for change. My friends march for equality and boycott bigotry but what about the delivery driver who misuses the wheelchair spot while he runs inside the coffee shop for a sec? And those places that you know are inaccessible? Would you patronize those businesses if instead of barring people with disability, those establishments barred people of color or a particular religion?

To some it’s just one concert.

One restaurant that makes wheelers enter through the service entrance.

One establishment I have to leave because I can’t fit into the bathroom.

One jerk who abuses the accessible parking spot.

Today…

Why can’t I just let it go?

Because this happens to people like me

Every.

Single.

Day.

Over.

And.

 Over.  

Grandfathered buildings, “inadvertent errors” like Alex experienced, lack of appropriate communication for people with hearing and visual disabilities and plain lack of forethought keep some people with disability from inclusion. These barriers mark spaces and events “ABLE BODY ONLY” just as clearly as a sign proclaiming “Whites Only” or “No Jews.”

How would you explain to a friend disenfranchised under those policies why you continue to patronize such an establishment? If the mere thought makes you cringe, why then is it ok to continue to support business and programs that exclude Alex and me? Segregation is segregation. Injustice for one is injustice for all. Or is it?

It’s not just people with disabilities who benefit from inclusive space. In your gym or sports bar, you can watch television over the din because of closed captioning developed for the deaf community.  Those curb cuts make it easier to get your bicycle across the street. Elevators and ramps benefit my friend with cancer who still fatigues due to her chemo as well as my friends with baby strollers. Universal design makes life easier at so many levels.

When I look at this photo of Alex, I am awash with despair that in spite of how far we’ve come, it’s so very clear that we have so much further to go.   

Advocates like Justin Dart, Lex Frieden and Mitchell Rappaport and so many others helped birth the Americans with Disabilities Act, which paved the way for people like me to no longer live as “shut ins.” I wonder what those pioneering advocates think when in 2012 they still can’t reach the deli counter.

I’ve had a chance to communicate with Alex’s mom, Arla this past week. She posted the picture on her facebook page and it has since gone viral. She’s gotten hundreds – by now maybe thousands of letters from people sharing their own stories of exclusion due to disability from all over the world. Every one of them is heartbreaking in its way. She’s tried to talk to the Powers That Be at Alex’s school. Rather than working with her and Alex to ensure this never happens again, they referred Arla to the County Supervisor. They’ve turned this into a fight rather than opportunity to grow. This fight is not over yet.

Oh, Alex and Arla were told that one of the biggest issues the day of his performance was that the choir director didn’t see Alex sitting there. Can it be that people with disabilities are as factually invisible as we are metaphorically? How could anyone not see Alex? How could anyone not remember he was part of the group?  

Do YOU see us? Will you now notice the places where we are absent?

Fixing these inequities is mostly a matter of no longer tolerating them and calling them out. When my able-bodied allies add their voices to mine and speak up to make it clear that they will no longer tolerate the segregation of people with disabilities, then those establishments have added impetus to change. It’s as simple as telling the manager on duty that you’ve noticed they’re blocking an access aisle and it must be corrected or contacting your municipality’s ADA office to report violations. Or, politely and non-confrontationally telling the person that parks in the accessible parking space and jogs off toward the store that it’s “not cool.” Depending on where you live, you can report parking offenders. Within the City of Phoenix, you can call our Save our Space program at 602-534-7722 (534-SPACE).

Inclusion is a matter of widening one’s perspective to consciously incorporate others who experience the world in a slightly different manner and remaining vigilant to barriers. It’s a matter of seeing people first instead of disability.

I’m not asking you to make it easy. Just, please, don’t make it impossible. 

Immediately following the spring concert, Alex asked to leave choir and join art class instead. What would Artie do?

But maybe, just maybe, if you’re so inclined, you might want to join me and Alex and Arla and so many others and knock down those barriers; both physical and attitudes to change the world. What a gift to give our children.

To keep up with Alex’s story or find contact information to share your thoughts with school administrators, join his community facebook page.

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5 thoughts on “Excluding Alex

  1. Oh Jen — you did it again. Brought me to tears. Tears of anger and frustration that this still happens. Before I got involved with disability issues as a result of my work, I might have been the person that parked in the accessible spot “for just a minute” while I ran in the store. Or looked the other way when I saw a wheeler coming my way. That was my ignorance, my fear, my not understanding that a person with a disability is just that…a person.

    Alex, don’t let the actions of one spoil your hopes and dreams for the future. Let’s use this opportunity to ensure it doesn’t happen again to another person.

  2. Amen- I applaud you with both hands- My son did not have a physical disability- His was learning- After many hours of being at the school , i was escorted off by the police on more than one occasion, and advocating for his rights- I am a very lucky person , because I know Arla personally- She was very instrumental in my son liking himself- She was a Karaoke DJ, and even if he did not sing good, she clapped as if he just sang at Carnegie hall- My son is now 28, he works full time and with much tutoring has overcome his disabilities- Thank you Arla- I can never thank you enough- Alex could not have a better warrior than you- I am on this bandwagon with you – Good luck and God bless- Als, Thank you for this beautiful letter- I wish we could make this world wide so people might sit up and take notice. Thanks to both of you again,
    Sincerely,
    Becki Farris

  3. Abbie, before I was paralyzed, I think I could have talked myself into using the spot for a minute. It’s my attitudes before my injury that haunt me now. Karma…

  4. Thanks, Jennifer, for beautifully articulating what you feel so the rest of us could feel it too. The choir director was also a teacher, teaching the other students in the school that it was okay to exclude Alex. It could have been a very different lesson.

    Keep on speaking out, we need your voice!

  5. my heart goes out to this kid. Thank you for posting his story. Unfortunately though, ironically perhaps, since I cannot see the image you posted, I’m not sure I know the whole story. In future, could you provide a description?thank you.

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