SCI and the Big C

I pull the door closed behind me and sit in the dark for just a minute thinking that I should go back inside, climb into my still-warm bed and pull the covers up to my nose and start over. Then I plug my ear-buds in and Don Henley and I take off for the nearly two mile push to the hospital.

November mornings can be cool by Phoenix standards. As I pass under the streetlights, I can see my breath. It’s such a rare occurrence here that I make a point of exhaling a big cloud under each light. The chill is welcome against the heat of the workout. I quietly hum along with Don and concentrate on the pavement in front of me. Push by push, I’m drawing closer to the place I don’t want to be.

Half a dozen songs later, the double doors whoosh open and I glide up to the reception desk. My rolling meditation has been successful. My breath is slightly labored from the exercise but my mind is calm. I wish the man behind the desk a good morning and introduce myself. “I’m Jennifer Longdon. I have a biopsy scheduled this morning.”

The “hurry up and wait” begins. I’m registered, change into a hospital gown and assessed. The IV only takes two pokes. Now that I’m prepped the nurse offers to get my companion from the waiting room. She’s startled when I tell her I’m alone. I assure her that I’ve arranged for transportation home and I give her the paper with the transport number and my info; I’ll be too drugged up to manage that myself when we’re through here. I plug in my earbuds, close my eyes and wait.

I don’t have to be alone. There are any number of people I could have asked to come with me. But then they’d be sitting here, trying to look calm while we make small talk or worry silently together. I’ve caused enough drama in my friends’ lives with my spinal cord injury. I just want to get through this and know what I’m talking about before I bring any more worry to my loved ones.

My doc comes in to say hello and go over the procedure. There are 2 sites we’re going to biopsy today. I like him. More importantly, I think I trust him. My paralysis and lack of sensation and other “normal” indicators complicate this diagnosis.

My inability to get onto an exam table at my PCP’s office, the difficulty in positioning me for standardized testing, the general wheelchair inaccessibility of medicine, finding an oncologist who will take a person with my history as a patient and my Medicare has added to the delay and the layers of angst.

It’s time.

As they wheel me back my nurse looks concerned. I joke “I can’t have cancer; I have a spinal cord injury. There’s a lifetime cap on tragedy. Right?” No one ever gets my humor. She gets a panicked look that I might seriously believe that. I smile and pat her hand. “It’s going to be fine. Either way. It’ll be ok.” I give her my iPod and glasses for safe keeping.

I’m finally positioned on the table. The room is cold. I’m staring up at a woodland mural on the light cover over my head. It’s supposed to be soothing. I focus on my breathing and stare at the mural. I try to identify the variety of trees; is that one an elm or a locust? They’re not at all alike but I can’t remember which is which right now.

My doc comes in, gives me an elbow bump of hello and then I’m unaware. As a precaution against autonomic dysreflexia, my doctor has decided to use twilight sedation.

When I wake up, my hands are folded around the call button. Don Henley’s crooning in my ears. I’d mentioned to the nurse that I hate the sounds of the hospital. She gave me my iPod to wake up to. My wheelchair is tucked out of the way across the tiny room. There’s always a moment of panic when I’m alone and my chair is out of reach. I don’t like feeling marooned. I close my eyes again, focus on my breathing and wait. The doc comes in, checks the bandages and my chart, tells me in a measured voice that there was a third site that he biopsied “just to be prudent.”

Suddenly, there it is.

I may have cancer.

No amount of mental discipline can make that go away. If it’s true; and that’s still an “if,” what does it mean to me?

I live a life with paralysis. Can I cope with cancer too? Is it treatable? Do I want to be treated? Is my life, in its current pain-filled form, worth prolonging? Am I willing to fight for even one more day? Would dying from cancer; if I have cancer and if I were dying; be preferable to dying from age in this paralyzed body?

I’m incapable of vomiting; those muscles are paralyzed, will that make chemo better or worse? How will chemotherapy impact my bones already savaged by fractures and osteoporosis? Even as fit as I am, there are times I’m not strong enough to push past obstacles or take on tasks. How will I manage in a weakened state of being? How will I get my sickened, weakened body to the toilet or to the kitchen? Having spent time in a nursing home, I refuse to ever return to one.

Finally, an aspect of my life that has nothing to do with SCI. Or does it? Could this cancer, if it is cancer, have been caused by all the xrays I’ve had post-injury? If I could feel those affected lymph nodes, would I have caught this sooner? If I were capable of getting on and off of an exam table, would I have gotten a more thorough exam earlier? Would it matter?

When this is over, where do I throw my time and energy? Continue on with SCI research advocacy or work to correct these access issues that allow a person living with paralysis to slip through the cracks?

What kind of crazy universe is this?

Can I really have cancer?

I have more questions than answers right now. So for now, I wait.

And try to remember to breathe.

Rest in Peace Preston Longino

I’ve been traveling. While I was gone I received an email via this blog informing me that Preston Longino had passed. I am bereft.

Preston started as just “some guy.” A guy who became my friend. A guy who made the world a little better every day. You know, the ordinary guy that you don’t fully appreciate as extraordinary until he’s gone. I will miss you Preston.

We met when KPHO’s Catherine Anaya did a 3-part story about me and my fundraising efforts through the Rock N Roll marathon. Cath is an elite runner; I was doing the half marathon in my regular chair. The first segment of Catherine’s story ran on a Tuesday in November of 2009. Preston saw it and contacted Cath. Together, they plotted a gift; a racing wheelchair that they believed would make my marathon more enjoyable for me. But, in their research, they learned that I’d tried various racing chairs and never did adjust to them well.

Thus, I had an opportunity to meet this person who had wanted to remain an anonymous benefactor.

Preston still wanted to make a gift. I suggested that he donate a “club” chair to a local group but that didn’t speak to him. So, in the end, Preston asked if he could donate a light-weight crème de la crème wheelchair directly to me. And wow what a chair he gave me. A top-end chair I could never afford and insurance would never approve. I could not have been more surprised.

Preston and I met over coffee and started a friendship. For a long time, we talked daily, sometimes for hours; a mix of current events, daily life and political views. We could not have been more different. I think the things we shared in common were our devotion to our children, a cynical view of humanity and a willingness to argue.

Oh how he loved to talk about his daughter, Christie. His pride in her accomplishments, his devotion was ever-present in any conversation with Preston. She was the center of his universe. While she was away at school, I always knew when he had just talked to her or she was coming home; he was always more animated. Sometimes I felt as though I knew her too, just from his conversations.

Preston was at Mile 9, my toughest mile, that marathon year. He had made a HUGE sign to encourage me knowing that this was the mile I feared. I worried that mile could defeat me. Preston’s sign, his presence and his smile carried me straight up that hill. He was there to celebrate with me afterward.

Soon after, my custom-fit titanium chair with upgraded push rims and special seating was ready. He was there when I received it. Then he asked if I wanted him to go away. He didn’t want me to feel obligated to a friendship because of his generosity. Preston was never an obligation, he was a delight.

As time marched on, he dreamt aloud about one day being able to retire, leave the rat race and live full-time among his friends up north. He loved the snow and the quiet and the rural nature of the White Mountains. Then one day, he was able to follow that dream. He moved north permanently. We continued to talk almost daily by phone, hours and hours. His joy was contagious. He wanted to take pictures, learn to draw, tinker. I sent him a sketch pad and pencil set. We talked how “someday” I would come visit. The city mouse and the country mouse we would laugh. He would tease me about being too urban. I would tease back about the lack of lattes and paved pathways.

Simultaneously, we had health setbacks. He had heart issues. I have a spinal cord injury. We both struggled and fussed at each other. Our calls became sporadic. One day we squabbled as usual over something I can’t even remember but I’ll suppose it was politics. This time neither of us picked up the phone the next day.

Days stretched into weeks and then calling became a thing. I didn’t know how to pick the phone and just say hello. I was certain he never wanted to hear from me again. Months later I sent a very casual email but he didn’t respond. I let it go. Then, with phone changes and computer crashes, I lost his contact info.

But Preston would return to my thoughts from time-to-time when there was an interesting political turn of events or I would get out my sketch pad or when my very special wheelchair would make a difference, I would think of Preston.

Now he’s gone.

Why the hell did I not try harder to reconnect? There was always “someday” and now there isn’t.

Preston Longino was a hell of a man. He had a huge spirit and a love of history. He was ethical, generous and kind. He was smart and quick and sharp. I enjoyed every minute.

I am struck by the irony that his spiritual heart was strong in directly inverse portion to his physical heart. I pray his final days were spent in the place he loved with the people he loved.

I’m sorry Preston. I hope you forgave me. I will miss you my friend.

Rest well Preston Longino. You left quite a mark.

2012 ADA Awards and Recognition Ceremony for the City of Phoenix


Today, we celebrated the 2012 ADA Awards and Recognition Ceremony for the City of Phoenix. We had a great turnout and participation. Mayor Greg Stanton and City Manager, David Cavazos gave remarks and I was proud to offer our keynote speech today.

Perhaps my favorite part of the day was meeting our MCDI grant recipients and learning how the grants have impacted their lives. It was great to also meet many of our ACE volunteers who patrol the City’s parking lots to ensure that accessible parking spots are available for those who need them.

Since I’ve been asked by those unable to attend, following is the text of my keynote today.


I want to first acknowledge and thank so many of the people who have made today possible…

Outback Steakhouse who generously donated today’s refreshments and Event Coordinator Robert Turtula

The EOD staff who worked on this event tireless and graciously:

Marquita Beene
Reyna Rodriguez
Jennifer Battaglia
Maria Fruciano

The MCDI Commissions who served on the event planning committee:

Larry Clausen

Rafael Figueroa

Kai Willow Kaemmerer

Erica McFadden

Jean Moriki

Jason Stokes

Of course Mayor Greg Stanton, City Manager, David Cavazos, EOD Director Lionel Lyons, and the entire City staff who make this event and day-to-day life in the city of Phoenix possible. And, my dear friend and our emcee for today, KPHO Channel 5’s three-time Emmy-award winning weekday anchor, Catherine Anaya.

October is National Disability Employment Awareness Month and this year’s theme; “A Strong Workforce is an Inclusive Workforce:  What Can You Do?”  promotes the benefits of a diverse workforce that includes workers with disabilities, who represent a highly skilled talent pool. More than 30% of the residents of our city have a disability. I am proud of the commitments that our city leaders have made to universal access and inclusion.

However, nationally; more than 59% of people with disabilities who are able to work cannot find jobs. Those who are employed are more likely to be under-employed than their able-bodied peers. Perhaps this explains why people with disabilities are significantly more likely to start their own successful businesses and create jobs for others.

Here’s the good news: Year-by-year, month-by-month, person-by-person, through awareness campaigns like this event, removal of barriers both physical and social, and inclusion commitments that’s all changing.

While introducing this year’s initiative, Senator Tom Harkin said: “It is time to take the next step, to open wide the doors to the workplace for our citizens with disabilities. In doing so, we will increase our workforce diversity; tap into a valuable, talented, under-utilized population, and marshal all of our available resources to maintain America’s leadership in the global economy.”

The City of Phoenix has already embraced this philosophy. As a disability advocate and Chair of MCDI, I make it a point to look for examples of inclusion in my everyday life. I am proud of my city when I see a workstation configured for an employee who uses a wheelchair, communication technology for an employee to assist with verbal communication, ASL interpreters at City events, captioning on videos and live streaming of city meetings and events to ensure the greatest possible access just to name a few.

And in the private sector, companies like Outback, Safeway, Walgreens, Lowe’s and Best Buy have shown that it’s possible to employ people with disabilities in a manner that spurs innovation, improves morale, increases productivity, lowers turnover, and improves the company’s bottom line.

The City of Phoenix is a rich tapestry of diversity. Due to the relative youth of our urban development, we are also very much a post-ADA city with a growing post-ADA workforce. By continuing to lead through example, Phoenix encourages other municipalities as well as private sector business to tap into this fertile pool of under-utilized talent.

So, back to today’s theme, what can you do? Examine the practices and assumptions of your organization for outdated and inaccurate portrayals of individuals with disabilities.  Stay vigilant to physical barriers and practices that prohibit full inclusion. And most important of all, see us for who we truly are: PEOPLE with disabilities.

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.


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.


Why can’t I just let it go?

Because this happens to people like me







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.

General Print Coverage

Laurie Roberts:

EJ Montini:

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

Broadcast coverage by  Navideh Forghani ABC 15

Broadcast Coverage by Jared Dillingham 3TV