About jenlongdon

Adult Educator, Speaker and Advocate, Jennifer creates educational modules for groups with a focus on disability awareness, accessibility and diversity.

This I Believe

I’ve been so busy for most of the summer writing for everyone else that I’ve not maintained my blog.

Tonight, while speaking with one of the folks here for campaign work, the subject turned to political advocacy and beliefs and I remembered that my pre-assignment for Emerge last September was to write a speech based on “This I Believe.” 

Here is my final product for that assignment. This would be the basis of my campaign run for any office.  I can’t remember now why I didn’t post it way back then. It’s clear I’m no great speech writer.

This was my first interaction with the AMAZING women who have become my Emerge Arizona sisters. Each one inspires and sustains me and I am so proud of every one of them.

Now in the heat of campaign season, this is what I would want every person working on these campaigns with me to know. 

I believe in the “love thy neighbor” society I learned about in Sunday School.  A world where we are each charged with looking out for each other and loving and respecting each other no matter our differences or perceived “flaws.”

I believe that fiscal responsibility and compassion happily co-exist. When we invest in the most vulnerable amongst us, our society is made stronger through their vibrancy.  The initial savings that have come to us through gutting our social safety net will cost us more in the long run than the preventative, proactive programs that have been destroyed.

I believe in a society where we are each free to rise to whatever heights our talents and tenacity allow us to achieve.  I believe that when we break down the barriers to inclusion for every member of our society; whether gender, ethnicity, sexual preference or physical ability that we are all enriched by that inclusion. Who would we be as a nation without Helen Keller, FDR, Rosa Parks or Dr. Martin Luther King who said “Whatever affects one directly, affects all indirectly. I can never be what I ought to be until you are what you ought to be. This is the interrelated structure of reality.”

I believe in the power of one lone voice calling out for justice; multiplied by the many.  I believe that my voice combined with yours creates a movement that cannot be ignored.  There is power in this room.  Power and purpose and passion.

I believe that together we can create positive change.  Together we can bring sanity and compassion back to our society. Together we can remove the barriers to inclusion for those who have been marginalized.

I believe that today is the day we begin.

Together.

The Line between Acceptance and Defeat

Almost from the first waking moment with my injury I’ve been surrounded by people who have urged me to “accept my injury.”  I’m not stupid.  I completely understand that I have a spinal cord injury.  Really people, I live it every single second.  It’s not like I can possibly forget that I’m paralyzed or all that comes with it. 

From the beginning I have refused to accept that I am permanently paralyzed.  From the first day I have said that at this time medical science cannot repair my spinal cord injury, but one day there will be treatment; a medication, a surgery, an implantable microchip or some such; that will mitigate spinal cord injuries. And one day there will be.  Whether I’ll ever benefit from said future advances only time will tell, but I refuse to say it can never happen.  

I had to ban a hospital social worker from coming into my room during my initial hospitalization.  Every day, she would show up to “help me with my denial.”

Denial.  AKA Hope. 

Every day this social worker would come to my room to talk about my injury.  Every day she hammered me to repeat after her “I am permanently paralyzed.”  I refused.  I would say “I am paralyzed.  At this time, there is no cure.” So yeah, denial.  But she’s the one who left each day cussin’ and spittin.’

I acknowledge my injury and all that comes with it.  I’ve never accepted it.   

Semantics?  Not at all. 

If I accepted my injury, I would not have taken the leap of faith that led to moving my legs and my subsequent victory in 2010 half marathon. Those 9 steps over the finish line were the second greatest thing I’ve ever done (my son is my greatest accomplishment of course).  The Wright brothers refused to accept flightlessness.  Roger Bannister refused to accept limitations and broke the 4 minute mile. 

Since my early days of injury, I’ve set big goals.  Scary goals.  Unobtainable goals.  Then I’ve gone on to complete them.  That’s what humans do.  Hope is the human default position. 

But I sit here now without a goal.  Without direction.  Wondering. 

What’s next? 

My hope is intact.  I KNOW deep within me that treatments that restore function to people living with paralysis are just a matter of time.  And money.  Thus, my fundraising continues.  My commitments to the people and the organizations that work to end paralysis are unwavering. 

My personal realizations though, they have slowly changed. 

I’ve sat a long time now, looking at the words I’ve put on this page, wondering where I’m going.  Sometimes the truths that fall out of my fingers surprise me. 

I’m nursing a new fracture.  Another in a line so long I’ve lost count other than I’ve fractured every bone in the lower half of my body at least twice.  Some, like my femurs, many more times than that.  Scoliosis slowly bends my frame, crushing what’s left of one lung; I lost large portions of both lungs at the time of my initial injury. I’m losing more function every day in my weak side.  These are simple facts.

I always knew my injury came on the cusp of discovery.  I would either been one of the first to be cured of this curse or one of the last who could not be.  I knew that time would reveal the reality of my situation in its own fashion.

If “The Cure” walked into my door today, it can no longer help me.  The secondary damage to my body is now too great.  I’ll never dance at my son’s wedding.  I’ll never climb to the top of Piestewa Peak again and watch the sun rise to reveal Four Peaks in the distance.  I’ll never again see the mystery Christmas tree that gets hauled up Camelback each year.  There are no more care-free days hiking rainforests or chasing up and down the steps in my favorite little spot in Mexico.  Never again a Songahm Star.

I am permanently paralyzed.   

That’s a game changer. One I need to sit with for a while. But one that still does not get to break me. 

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.

SB1474 Coverage

Senator Gould has re-introduced a gun bill to allow guns on campus,. SB1474.  A similiar bill was passed last year and vetoed by the Governor.  Senator Gould, with strong support from the NRA has “fixed the language” to remove Governor Brewer’s objection to the bill. 

Too bad the NRA and Senator Gould didn’t fix the language addressed by the law enforcement officers present; which as pointed out would allow for concealed shot guns and gym bags full of guns. 

Archived video from AZ Senate Judiciary Committee. The first 50 minutes is about the Repeal of Clean Elections. I’m the first witness on SB1474. Make SURE to pay attention at 1:30 when Law Enforcement begins to testify. http://tinyurl.com/6m9m9mz

General Print Coverage    http://tinyurl.com/89n7um9

Laurie Roberts: http://tinyurl.com/7nv8dl5

EJ Montini: http://tinyurl.com/7ej7l62

I posted this in response to EJ Montini’s column, wanted to share here regarding SB 1474 yesterday…

was present at the hearing yesterday. First, Senator Ron Gould did allow all (or at least almost all) who wanted to testify the opportunity to be heard. Kudos to Ron Gould for that. There are other Chairs who would not have allowed such testimony.

I spoke in opposition to the bill that was past in spite of OVERWHELMING testimony in opposition. The testimony of Law Enforcement was enlightening… As the bill stands, “gun” is not defined. LEOs pointed out that “gun” could mean a concealed shot gun or assault weapon and that a “gym bag full” of guns would be equally permissable. The committee agreed to the point. There was talk that the bill could be fixed before a final floor vote to narrow that.

With regard to CCW, testimony also brought forth the continued erosion in AZ of what qualifies for CCW training. Currently, it is permissible to take an on-line course and shoot a pellet gun at a range once to get one’s CCW. The testimony on CCW was lengthy. Indeed, this particular point caused Senator Yarbrough to vote in opposition to SB1474.

Broadcast interview with Brahm Resnik NBC 12 http://www.azcentral.com/video/1437455021001

Broadcast coverage by  Navideh Forghani ABC 15 http://tinyurl.com/8axkpgt

Broadcast Coverage by Jared Dillingham 3TV  http://tinyurl.com/6n45an5

SB1474 Testimony

Following is the text of the remarks I had planned to make today to the Arizona Senate Judiciary Committee.  I was told to prepare to speak for about 5 minutes.  When I got to the podium, I was allowed 3 minutes (so was almost everyone else, not claiming unfairness there).  If I can find a link to the archived testimony for today I’ll post it.  I had to edit on the fly. 

Good Afternoon.  Thank you Chairman Gould and Senators of the Judiciary Committee for taking the time to allow me to speak to you today.

My name is Jennifer Longdon. I am a registered voter and I live in Maricopa County. I am the mother of a second year ASU student who lives at the Taylor Place dorm in downtown Phoenix. I am also a gun owner and a survivor of gun violence.  Senators, I oppose SB 1474.

For many here today, this is a theoretical discussion of what they THINK they would or could do if faced with sudden gun violence. Seven years ago my fiancé and I both sustained life-altering injuries in a random attack that has never been solved.  The sort of unexpected, random violence that this bill purports to protect our college students, my own son, from experiencing.

This is not a theoretical discussion for me Senators.  I live it.  I have “skin in the game.” 

On November 15, 2004, my fiancé, David and I were both injured by five random bullets as we drove to a restaurant for a quick dinner.  It was our anniversary.  I was shot in the back and paralyzed from the middle of my chest down.  David, was shot three times, one of those bullets transected his brain leaving him blind, unable to smell and with serious cognitive injuries. A fragment of that bullet still rests behind his right eye.  Neither of us were expected to live the night of our shooting. We both coded multiple times. 

Senators, you already know all too well about the effects of traumatic brain injury caused by a gunshot wound to the head. That night, I lost my life as I knew it, my career and ultimately the love of my life. 

We were armed. We had just returned from vacation and David was transporting his handgun from secure storage at his place of business back to our home. We were armed and David was trained in the use of that firearm yet it happened so fast, he never had a chance to fire a shot. The first thing he did was save my life by throwing his body over mine. Neither of us panicked. Both of us were professional martial arts instructors, and David was a four-time world champion. We had both trained for years to react quickly to violence. David reached for that gun but was unable to use it. I reached for my cell phone and dialed 911. If David, with his training, conditioning and superior reflexes was unable to react quickly enough to save our lives, how would a sleepy student react faster?

In that moment when bullets are flying and adrenaline and fear are pumping, it is sheer hubris to believe that the average person will be able to act with speed and clarity and discernment to a situation that is over before it’s started. To have compounded our own tragedy by firing back would have done nothing but put all the bystanders in that parking lot and restaurant in jeopardy.

Having lived through a random attack, I agree with Law Enforcement that armed but untrained citizens pose their own unique public safety hazard. I believe you have statements from law enforcement agencies opposing this legislation.

Further, as a parent of a college student, and now as a person with disability that has limited my income, we’re already struggling with tuition. The lockers and security needed to comply with this bill have a cost associated with them that amounts to an unfunded mandate that will place the burden squarely on students, or more likely parents, in the form of tuition hikes.  Stakeholder groups are opposed to this bill. You’re forcing us to pay for a provision we overwhelmingly have not asked you to provide. My family stands one more tuition increase from my son potentially being forced to leave school. This cost, could tip us over that edge.

I reject the claims that the proliferation of guns on campus would protect students but instead I argue would place them at greater risk of gun violence, either intentional or accidental. I would argue that the tragic shootings we have seen on campuses are a result of the ease with which the shooters were able to obtain weapons. Again, I am speaking as a gun owner here.

College is a time of youthful indiscretion. As a parent I sometimes worry about this heady new freedom that comes with college life.  Up until now, I’ve considered my son’s biggest risk to be his first hangover or an ill-advised tattoo.  Our children’s’ biggest worries away at college should be their GPA or parents finding a link to their facebook pictures from spring break.  Not the nagging knowledge that their binge drinking roommate has a gun.

It sends chills up my spine, well, the part that still works, to think that my son’s life could be forever altered, as mine was; but his by some random student who mixed alcohol and youth with his or her shiny new gun purchased on whim simply because it was allowed on campus.

Since I began to prepare for this afternoon, I’ve been haunted by one particular memory from my shooting. It was my second day in the ICU and a friend was brushing my hair. Her demeanor changed and she became –evasive. I pushed her to tell me what she was so obviously holding back.  Turns out she was picking bits of David’s brain and skull out of my hair and didn’t want to tell me. David’s dried blood was still crusted in the folds of my ears and the back of my neck. She got a nurse and in spite of my unstable condition, together they scrubbed me down and removed the last vestiges of his blood and tissue from my body. This is NOT a memory that belongs in anyone’s head. It’s certainly not a college-worthy memory.

Please, Senators, I BEG you, don’t do this. Please do not forward SB1474 for a vote.

Thank you for this opportunity to be heard.

Finding My Voice

As I write this, I’m trembling with bald, naked vulnerability. 

Some of you have noticed that I’ve changed my tone here and that my posts have gotten sporadic.  Not so much writer’s block; there’s much I want to say.  More like laryngitis.  It’s become difficult, painful to give voice to all I want to say.  I’ve retreated from posting here to rethink whether or not I should be writing at all because I’ve become aware that I have a new devo stalker. 

What’s a devo?

A devo (devotee, dev, “compassionate admirer”) is a fetishist who is sexually attracted to my wheelchair.  Some devos are attracted to braces or amputees’ stumps or the deformations caused by polio. 

I had no idea that this… subculture… existed until a friend; a more seasoned fellow wheeler clued me in.  Turns out that the brand new wheeler I was comforting online was actually a man pretending to be a newly injured woman.  The devo’s character told me how “she” was traumatized by the routine of self-catheterization, “she” just couldn’t get it right and “her” health was suffering.  Would I help?  Remembering my own struggles early on and knowing that proper self-cathing technique was critical to “her” health longevity and overall wellbeing, how could I not help?  We went through every excruciatingly intimate detail over and over. 

I felt so dirty and so STOOPID that I had fallen for someone so depraved.  I retreated into myself vowing never again to be fodder for another devo’s twisted fantasies.  But in order to avoid them, I had to know more about them. 

I did a Google search and found out way more about this world that I could ever want to know.  I wish there was a way to erase some knowledge once you obtain it.  I wish I’d never seen the photos secretly taken of women with disabilities just living their everyday lives.  I wish I’d never read the comments about “floppy legs” or the come-hither attraction of a pain-wracked spine so twisted by scoliosis that the woman can no longer walk or breathe fully.  I wish devos did not now own a small corner of my brain. 

I really discourage you from a Google search but some of you will insist so I’ll wait… g’head, look it up…

I told you so. 

I’d feel less dirty turning on the light and find my kitchen teeming with cockroaches.

For those of you smart enough not to plant that image in your head, here’s an analogy.  Imagine you posted your kid’s talent show video for your family and friends to enjoy on your facebook page. Unbeknownst to you, one of your facebook friends is NOT what they seem. Now imagine that “friend” posted your YouTube vid on a pedophile site and along with that surreptitiously filmed your kid at the playground and posted that in the same place.  Now, pedophiles from all over the world are viewing this very innocent footage and making sexual comments.  Your child is most likely physically safe since most of these people have no idea where to find you.  But still, that sexualized context remains.

Over a month ago, I learned that my image was being used in such a manner on a couple of devo sites.  Videos that I had made for work had been “repurposed” as devo porn.  With help I saw my work video with all the devo comments.  I could barely breathe and the itchy, icky, I-need-a-shower-before-I-vomit feeling overwhelmed me.  The comment that created the most activity also caused me the most horror. “It has nice feet.”  One of my feet was indeed discreetly bandaged. 

It has nice feet.”

Since then, every time I focus on writing, I can feel them, the devos, out there waiting.  I find I’m editing myself to avoid creating an orgiastic devo rush.

That post I made after my fall?  The one many of tell me you read on the edge of your seat?  Devos also read it breathlessly.  My helplessness, my struggle against my “useless” legs, my fear.  Pure. Devo. Porn. 

I’ve had 3 encounters with devos in my real-time life. 

Early in my life as a wheeler, pre-social network, the first showed up at my house out of the blue with a gift. We had never communicated before that moment at my door.  He was certain I’d be thrilled by his attention.  He wanted pictures of my legs.  A friend helped him understand that his attention was unwanted. 

The second was a serendipitous encounter in the grocery store. As I was at the self-checkout lane, he came in. He actually squealed with delight and rooted himself in front of me.  He stood rapt as I struggled to reach the money slot, dropped my change on the floor and spent way too long trying to pick it up.  When I finished, he clapped in delight and asked when he could see me again.  Pearl was there.  I wanted to let her eat him like candy. 

The last stalked me while I was in the hospital after my major fall late last winter.  Some of you may remember that drama. I was facing amputation of my legs due the severity of the fractures. He contacted me on a pretext using a name familiar to me.  I didn’t see through that pretext due to the haze of painkillers and anesthesia for my multiple surgeries.  For this particular devo, that trauma was a siren call of sexual promise. He wanted to be there; breathe in my pain and fear.  He wanted to see my fresh stumps. Touch them. Help bandage them.  He was disappointed when I turned the corner, began to heal and kept both legs.  As I healed and relied less on pain medication, the mind-fog cleared and that space of confusion that allowed this devo to move freely through my life cleared too.  With help from friends, I locked down my life, severed the link outside of my hospital room to my support system and choked off his access to me. 

So, when the devos come along here and comment on how harmless they are and voice their protests at my stereotyping, bear these moments in mind. 

December marked a real crisis of faith for me.  I considered shutting down this blog and hiding away from those I consider sexual deviants.  Every post I make on my life with SCI is devo fuel.

I’ve brought some of this on myself I suppose.  Since my injury was so public in my region, I decided to live my spinal cord injury just as publically; my small act of advocacy.  I know that before my injury, I had no clue about some of the issues that I now deal with regularly as a person with a spinal cord injury.  How can I expect the rest of you to understand and relate if you have no context?

Early in my wheeler life I found support in an on-line community.  I was struck by the honesty and willingness to share the most intimate details of life with a spinal cord injury.  In this community I often heard “If only the able-bodied world knew X about us (wheelers) then maybe we could move toward Y result.”  Based on this, I felt my decision to live so publically was a good one.

There are issues I’d rather not discuss.  Times I rather skirt some of the realities of life with a spinal cord injury.  But if you don’t understand my risk of public incontinence, how can you understand just how valuable reliable access to public restrooms is?  If I don’t explain all the ways I’m now different, how can we lobby together for equitable access so we can explore our similarities?   

That person with the smartphone?  Are they capturing the scene around us for an innocent reason or to post it to a fee-based devo site? 

The guy that says hello and stares in Starbucks?  Is he captivated by my charm and beauty or getting wood because of my wheels? 

Once again, the world feels dangerous and hostile. 

How do I move through the world with confidence and trust when it feels like it’s full of devos?  How do I trust? Anyone?   

What do I do?  Do I continue to live a big, bold, open life or do I hide away in the house?  Do I continue to share my life with you unfiltered and honest or do I start editing? 

Am I safe?

Is there an ulterior motive to that new person’s interest in me?

How do I get those devo-site comments and images out of my head?

When the person next to me in public looks down transfixed, is he thinking “There’s that quarter I just dropped.” Or “It has nice feet.” 

I am a woman, not a wheelchair.  A fully realized adult woman.  I have all the same desires and interests I did pre-injury. I AM still a sexual being.  I’m not as inanimate as my wheelchair.  I’m attracted to men who delight in my strength and capabilities but shelter my vulnerabilities.  You can’t have just part of me.   That’s the piece that freaks me out most of all.  These people; devos; revel in my helplessness, not my strengths and abilities.   

I have spent the past seven years clawing my way back from a devastating moment.  I have worked to develop a space where I fit again.  I no longer fit in the box my old life came in. 

Devos, I do not welcome your attention.  I cannot stop you from co-opting my image.  You may yet trick me into unwitting participation in your fantasies.  Any you take of me, you steal.  I will not curtail my life any further to avoid you.  I will not wear your shame.  You will NOT steal my voice.  

I am a woman, fully human.  Not an it.

And the Person of the Year IS…

Can’t decide whether New Mobility deserves kudos or raspberries.  I was leaning toward a big fat Bronx cheer but I’m on the fence.  New Mobility, a magazine for “active wheelchair users” created quite a stir when they chose “Artie” a fictional wheelchair user in the series Glee played by an able-bodied actor as their person of the year

A year ago December, I posted this piece regarding Glee’s portrayal of disability.  I have found Glee’s portrayal of disability issues… thin… at best.  Certainly there is a sharp contrast to the multi-layered, nuanced approach the show takes to other issues from teen pregnancy to body image to LGBTQ to bullying.  My blog post (linked above) concluded:  “Glee misses the real miracles of disability.  Those who learn to live average lives in trying circumstances.  Those who find grace and courage everyday to face a world that is inadvertently hostile to their existence.”  Nothing on the show since has changed my opinion.

Christopher and Dana Reeve Foundation blogger, JLo, wrote this piece, which caused me to re-examine my frustration with Allen Rucker’s New Mobility article.

I’m sure Mr. Rucker is relieved to know that this cranky wheeler is semi-converted.  NM’s choice has elevated the conversation about how people with disability are portrayed in the media.  Indeed, for a depiction of wheelers in the media the choices were Artie and … well, no one.  Name one other regularly occurring character in a wheelchair.  Not so easy to do. 

I am happy that Artie is as sexual as his peers (OMG are we REALLY discussing “wheelchair people” doing the nasty?) But he had to be lifted onto the bed by his cheerleader girlfriend.  Poor helpless Artie.  Why not allow him to be more capable?  If he can hold a wheelie, play football and manage some of that choreography, he can get his own damned self onto the bed, especially for Brittany. 

Statistically, the dude in the wheelchair would most likely be one of the football players.  Why is the nerd in the chair, not one of the school studs?  I HATE that Artie is portrayed as nerdy and feeble. 

The dearth of PWD portrayed in the media is disheartening.  I only wish writers could create stronger, more accurate, multi-dimensional depictions of people with disability. 

That would require a familiarity with disability.  I wonder how much time the creative people spend with PWD? 

I’ll bow to NM’s choice for Person of the Year.  Maybe they can lobby Glee for more accurate portrayals of PWD.  Allen Rucker for plot advisor of 2012 anyone?

Tis the Season…

I haven’t posted during the holidays.

Any decent misanthrope knows this is the time to lay low and let the rest of the peoples have their warmth and cheer and family time.  

Although I try to avoid the clichéd “Bah Humbug!” I’m still in the “heart two sizes too small” category. I’m a cynic.  I’m always looking for the catch, the fine print.

Then WHAM! My Christmas miracle sneaks up like a ninja and there I am, wrapped in joy and wonder and gratitude.

But I’m starting in the middle. Let me back up…

For anyone who doesn’t know, I sustained a spinal cord injury seven years ago. It changed my life and my lifestyle. I had to completely re-invent myself. And while I’m not textbook destitute, there’s more ramen, tuna and peanut butter in the cabinet than most college dorm rooms. If something – anything – breaks, I’m screwed.

Being a person with a disability is expensive. Much of what I need, from filling up my gas tank to changing light bulbs to picking up the dog poop I pay others to do for me.  Not out of laziness, out of paralysis. 

In September, my 22-year old air conditioner gave up the ghost. In most cases this would be uncomfortable. With a spinal cord injury and the loss of one’s ability to thermo-regulate, this can be deadly. Real quick. Spinal cord injury takes away more than just one’s voluntary functions it also takes the autonomic functions like the ability to sweat or shiver.  

But, air conditioners cost money. Lots of it. And I simply don’t have it. So, I set the worry aside for a bit. I need to have AC by May but until then… well…it’s not May yet.

I continue to look for work. I search for something forgotten that I can sell. I continue to look for a roommate to help with some of the household expenses. If I can’t come up with the cash before it gets hot here in Arizona, I’ll have to give up my home and move to a nursing home.

I just spent a couple of months in a nursing home when I fell last February and broke 43 bones in my legs and feet. I vowed I would die before I would ever go back to such a facility forever. So, I need AC by May.

My neighbors, Edna and Fran have been worrying about this more than I have.

Recently, Edna saw a little notice in the newspaper. (Yeah, the hard copy that shows up on the driveway each day, people still read them!) She called Fran and together they conspired to take care of my air conditioner problem.

Hobaica Services, a local company that does heating and cooling as well as wine cellars and solar hot water systems founded a program called BEGIN- Business Entities Getting Involved in our Neighborhood. This is their third Christmas season where they provide new units to as many as eight needy households.  

Fran and Edna contacted Hobaica and somehow convinced them to donate one of those units to me. I have a whole new view on these two. They’re more than my sweet and loveable neighbor ladies, they are steely negotiators. Who knew?

Last week, Paul Hobaica called me out of the blue. Just as I was about to hang up on this presumed telemarketer, he mentioned Edna and Fran and facts about me. This was no random call. I was confused. He had to repeat himself and use small words. Hobaica was donating one of their units to me.

Me?

ME!

I probed for the catch. There are no free lunches. Surely, no one just gives away air conditioners. If it’s too good to be true… This is exactly how senior citizens get lulled into cons. They still believe in small-town Americana, apple pie, good deeds and honest neighbors. I am far too experienced (ok, cynical) for that. I probed some more.

He was patient and kind. The truth of it hit hard and I began to shake. And cry.

Hobaica Services, Edna and Fran had just saved my life. I can’t live without air conditioning; I would have to go to nursing home. I won’t go back to a nursing home. Period.

Days later, another Hobaica, this time Mike came by to take a look at my unit. There it sat, old and rusted. He climbed into the attic to look over the rest of the system and came down with pictures of the rusted out catch pan. It should never hold water so the malfunction in my attic had been long-term and caused some real damage.

Everything would need to be replaced. Not just the broken condenser out back but the air handler and furnace in the attic. He showed me the pictures of the failing equipment in my attic.

So.

Here it is.

The catch.

Sure I can have a new condenser but I have to buy all the rest of the system. Right?  “We’ll replace that too.” Mike finished without missing a beat. 

I could not have possibly heard him correctly. “What’s the fee?” I asked. I have really, really big dogs. I bet they can beat him to the door. I’m already figuring out how to explain the scam to Edna and Fran.

“There’s no fee.” He looks at me like I’ve just grown antlers out of the middle of my forehead. “We told you we’re going to take care of you. We can’t replace the outside unit and leave the rest. We’ll take care of it.”

Again, the tears. I can stay in my home. I don’t have to kill myself by May. Wow. Just… wow.

Today, a work crew from Hobaica showed up as scheduled and installed my new unit. Three incredibly professional young men started unloading tools and equipment. I recognized much of the stuff they were neatly laying out.

“What’s that?” I pointed to the huge bags. “Oh, that’s all the new duct work. We’re going to replace all the ducts to your vents. What you have in place is old and not very efficient. This will work better and save you money in the long run.” And so it was with the new thermostat and the new air return/filter thingie.

EVERY SINGLE part of my HVAC system was replaced. At no cost. Because it was “the right thing to do.”

Who are these people? Do they not know that we live in a world of profit above all else and cutting corners?  They espouse this thing that I used to expect but have forgotten… Business Ethics. They did the job the right way because it was the right thing to do and that’s who they are. They asked for nothing… not one thing in return. Wow. Just…wow.

A local business taking care of their community. They quietly but powerfully proved through their example that there is still honesty and integrity in the world.

The adage that you can judge a soul by how they treat the least among us is so true. I’m relatively invisible. They gain nothing but good will and perhaps good karma by their kindness.

This was charity. There is not a soul on the planet that would have faulted them for only replacing the condenser out back as they originally agreed to do. Or only the condenser and the air handler in the attic. But everything? All brand new? No skimping. No cost cutting.

Business ethics indeed!

The three young men who were here all day doing the actual installation were so polite and professional. I want to adopt them all. Raul, Tom, Richard, if you ever read this, thank you. And, Hobaica Services, you couldn’t have better ambassadors for your company.  

I poked around for more information on the BEGIN program. From Hobaica’s website: We estimate to have installed $49,400 worth of heating and cooling equipment with 136 hours of labor for this year. Projected value of the 3 years is $148,380 with 23 households helped.

In these times, in this economy, businesses are cutting back, not giving in the same ways they have in years past. Not these guys. Asked Paul about that today. He told me with a shrug that continuing to give was the right thing to do.

And here I sit, the biggest, Grinchiest, Scroogeist, bah humbugger wrapped up in my own Christmas miracle. The only thing missing is a little snow and a group of carolers. I bet the dogs can beat them to the door.

And there’s this thing inside me, trying to take root. I think it’s hope. Maybe faith in humanity. I’m still suspicious but cautiously open to the possibility.

The house is quiet now. Just me typing away. The only other sounds are the soft sighs of Pearl and Auburn’s deep sleeping breaths. The new furnace clicks on. Nearly silent, just a whisper of warmth surrounds me. Grateful tears flow.

Thank you Fran.

Thank you Edna.

Thank you Hobaica Services. 

Thank you to all the vendors who donated or discounted the supplies and equipment that now heat my home. 

And without one drop of satire or cynicism; God bless us. Everyone.

Hey Project Runway! Dress us

 

Dear Project Runway,

Congratulations on another fabulous season! The close of Season 9 means we’ve seen just shy of 150 designers and challenges. Season 9 brought some firsts like the outdoor runway and live concert.

You’ve done everything from groceries to pajamas to trash on everyone from celebrities to moms to brides to stilt-walkers to drag queens. You’ve dressed plus sizes, mature women and wrestling divas. You’ve even dressed pets, and (gasp) men.

But there’s at least one group you’ve missed. Real-world women with real-world fashion challenges who have long been overlooked by the fashion industry… women in wheelchairs. There are more than 3 million wheelchair users in the US; more than half are women. I imagine this is a slightly larger number than women on stilts.

How about it Project Runway? Are you up to the real-world challenge of dressing women in wheelchairs? We have significant fashion challenges. We tend to need longer inseams and higher rise on our pants because we never (or for some, rarely) stand. Our years of pushing a wheelchair have changed our upper-body portions. These realities would challenge your designers to think creatively to address our unique needs.

We are diverse. We are active. We are fashion minded. We are ignored by the industry. You can change that. How about it?  

 
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