Disability Matters 2011 Conference

Photo courtesy of and used with permission from Erin, my peer from one of our Ohio offices.
These are the KPMG employees from literally across the country, gathered at the Conference to receive our Employer of Choice Award!

On April 6-7, 2011, 16 organizations in a variety of industries from around the country were honored at the 5^th Annual Disability Matters Conference in San Jose, CA.  The awards conference, run by Springboard Consulting, recognizes companies that help people with disabilities succeed through their efforts as employers and suppliers.  Honorees are recognized in one of five categories: Workforce, Workplace, Marketplace, Small Business, and new this year, Employer of Choice. 

KPMG has been recognized in the past in one of the four original categories; this year, the firm was told that our efforts go far beyond what the original categories encompass, and we would be recognized with Cisco Systems, Inc. as the first Employer of Choice honorees!

The conference consisted of many networking opportunities & panel presentations by the honorees in each category, creating a rare opportunity as each organization shared what they are doing as well as what roadblocks they have overcome along the way.  Attendees were able to ask questions of each panel, effectively producing an array of ‘take-aways’ we can use in our own corporate community.  I would have presumed it would be a feel-good day, celebrating all we're doing, but how much could one of us gain?  Afterall, we were all honorees already...and KPMG was an Employer of Choice, of course.  What could be new when this was a group of singing clergyman preaching to the choir?

Employment policies, top-down integration efforts, and radical accessible venues outside of the workplace, that's what's new!!  Paint me with stripes and call me a tigerlily, I couldn't have been more visionless.  It's hard to narrow it down because all 16 organizations impressed me, but here are some of my absolute favorites - watch out for these radical revolutionaries, people:

• Cisco Systems, host to this year's event and the other Employer of Choice, took us on tours the afternoon we arrived.  Visiting just a few stops of their 30+ building campus in San Jose, we encountered a receptionist in another building (via one large itneractive TV + webcam set-up) before heading off to learn more about just a few of the adaptive technology products they offer.  "So you saw a videophone, big deal"...true, if that's all we saw.  But actually, we learned how they dream up the new technology, how they incorporate real-life potential users to test their products, and how they are designed to fit into a lifestyle, not define it.
• Autism is a hot topic these days, and as you all know by now my brother has Asperger's, so it's a topic that catches my attention.  Growing up watching my dad and brother fight every time they went to the movies as he tried to deal with the overall darkness, bright flashing screen, blow-your-hair-back volume, and social standards about laughing, clapping, or singing along...well, it was exhausting!  AMC Theaters paid attention to a mom whose son had the same challenges - and instituted Sensory Friendly Films!  At these special airings (the same weekends as shows are available to neurotypicals, but at times when there are fewer crowds), kids - Autistic, neurotypical, or whatever - are encouraged to stand, dance, sing, shout, and participate in their movies...which, by the way, are shown at more tollerable volumes, with a little bit more lighting, and no trailers to side track attention!
• Every kid has their favorite piece of equipment or game to play at a park.  I was a see-saw fan myself, though in their absence my heart belongs to swings, whereas there were the hardcore jungle-gymnasts or the Emporers of Tag.  But one family dreamed up a magical playworld I couldn't have fathomed, and which warms my heart.  Morgan's Wonderland in Austin, TX is touted as the World's First Ultra Accessible Family Fun Park in acknowledgement of their simple but ingenious solutions to common problems.  A borderless sandcircle replaces the barriered sandbox, admission is limited to a fraction of the potential capacity to minimize ride wait times, & world-premier 'off road' vehicles that allow people who use any mobility aide to join their family on a park-wide trail effectively remove the things that keep people of different abilities apart.  Only one entrance & exit are utilized to control volume and security.  But my ABSOLUTE favorite innovation?  One that is so simple and would be so useful to every park go-er in the US...each family/group entering the park receives wristbands such as we know from water parks, but these have RFID tags!  Tags are assigned to a family/group and are usable at stations throughout the park to locate other members of the group.  This allows every visitor freedom to safely roam, and helps find members who may have wandered away from the crowd!

KPMG’s Disability Network sent representatives from offices around the country to take part in the conference, including yours truly.  Each participant was asked to bring back action items to implement in their local office.  Besides the amazing inspirations listed above, some of my favorite ideas for my office include ways to effectively distribute information to employees, accessibility considerations as we remodel in the coming years, and potential local office trainings.  Now I just have to find time to work with office leadership and our chapter of the Disability Network to put key take-aways into practice.

Disability concerns are relevant to all employees in my firm, whether they consider themselves disabled or not.  If they don’t have a challenge, I promise one of their coworkers does.  Accommodations developed for one employee’s challenge often wind up being useful to other employees.  And, as it was said at the conference, ‘this is a group anyone can find themselves a member of at any time’.  It would only further our goal to be a true Employer of Choice for all employees to unite in support of these initiatives...and the same is true for employers, community groups, and even families around the world.

The 2012 Disability Matters Awards & Conference will be in my backyard next year, in Newark, NJ April 18-19.  Not an American reader?  How about Paris, France, for the Inaugural European Disability Matters Conference!  No date has been determined yet, but details will be coming soon, I'm sure.  No matter where you are, I suggest following Springboard's leader, Nadine Vogel, on Facebook or Twitter!

Who Says Seuss Has to be a Doctor?

The original Seuss may have been known as 'Doctor', but I know a Sjoggie Seuss who was a nurse!

My favorite blogger, Julia, has written this PERFECT post as part of the April WEGO blogging challenge.  You can see the original, and all of Julia's great posts, here.


On a bright spring morning -
a beautiful day -
Julia the sjoggie
went outside to play.

She rushed out the door
and didn't stop to think
that she should do a few things
that took just a wink.

She didn't wear her sunscreen.
She didn't wear her hat.
She didn't put in eye drops.
The next day she was lying flat.

Oh, poor me! she cried.
Whenever will I learn?
I'm so stinkin' tired!
And I've got a sunburn!

The moral, my sjoggies,
of the story is this:
Wear your hat and some sunscreen,
so your spring will be bliss.


Hm, Julia's message reminds me a lot of this post I wrote a couple years ago...maybe great minds think alike;)

What We Can Learn From Sammy Davis Jr.

I recently found myself in a familiar situation, emailing with my team at nearly 11pm (yes, while I was on 'vacation').  Now, for the record, I had every right and option to not reply, without retribution.  But, being the overachiever good auditor I am, I wanted to keep the process moving as it was about a question the client needed answered.  In the process, I realized I had gotten a little "blurty"...you know, didn't really say anything 'wrong' but didn't necessarily weigh every word I wrote before sending an email.  I knew it would be ok, but wasn't perhaps the behavior that would earn me any kudos.

I was obsessing over contemplating the emails I sent, but came to a (familiar, again) conclusion - I gotta be me.  It's the same reason I disclose my medical situation.  I've known for years my personality evokes a strong reaction in others - people either love me or hate me - and I think it's also due to this same irrepresible trait.  I gotta be me.  If someone can't (or won't) work with these aspects (my illnesses, my honesty, etc), the whole thing isn't going to work in the longrun anyway and I'd rather know up front.  (Fortunately, so far KPMG and the important people there I work with can:)).  I gotta be me...and I gotta be surrounded by people who are ok with that.

I found this version of Sammy singing this song, and love it - it's real and raw and gutteral.  I love it:



Whether I'm right or whether I'm wrong
Whether I find a place in this world or never belong
I gotta be me, I've gotta be me
What else can I be but what I am

 I want to live, not merely survive
And I won't give up this dream
Of life that keeps me alive
I gotta be me, I gotta be me
The dream that I see makes me what I am

That far-away prize, a world of success
Is waiting for me if I heed the call
I won't settle down, won't settle for less
As long as there's a chance that I can have it all

I'll go it alone, that's how it must be
I can't be right for somebody else
If I'm not right for me
I gotta be free, I've gotta be free
Daring to try, to do it or die
I've gotta be me

I'll go it alone, that's how it must be
I can't be right for somebody else
If I'm not right for me
I gotta be free, I just gotta be free
Daring to try, to do it or die
I gotta be me

Can I Be a Survivor?

Image found here.

As you know, I have a team for the Philadelphia area Sjogren's Walkabout on May 7 (shameless promo: feel free to join or donate here).  While I have a few things working for me - loyal & supportive family and close friends as well as the support of my employer - I am still struggling a bit to get people beyond that close family/friends circle to even hear me out.  In my frustration, I thought about the various other causes I've seen promoted (and supported) on Facebook and other places...and noticed a trend.  As might be expected, most of those causes were cancers - breast, blood, even uterine.  What makes cancers more attention-worthy than Sjogren's (besides the fact no one can pronounce 'Sjogren's')?  Well, there's the basic element that cancer is more well-known than an autoimmune disease (please note: I'm not suggesting the general public understands what it's like to be a cancer patient, but if you say "cancer" to someone they have an idea what's going on).  But...I think there's something more.  And that's when it dawned on me - most of the people I know participating in these events are (or are representing) a Survivor.

With some exceptions (such as my friend Bridget who has Fibromatosis - a chronic cancer which will continue to cause tumors throughout her life), most cancer patients are striving to defeat their illness.  Once in remission, they live with the ongoing risk of another bout but also the hope that it may be over forever.  We describe their experience as a "battle" with cancer, their role as a "fighter", and their remission as their "victory".  Ultimately, those who "defeat" their cancer are "survivors".

I found this definition for 'survive' on Merriam-Webster's Medical Dictionary:
"to continue to exist or live after (survived the stroke)"

But what about me?  I too hear the terms "battle" and "fighter"...but I cannot be "victorious".  I can never be a "survivor" by this definition; my Sjogren's (and other diagnoses) are forever.  I'm what I call an optimistic pragmatic - I hope for a cure in my lifetime, but I live according to reality as it stands today, and today I cannot expect to "defeat" my Sjogren's the way someone might "defeat" cancer. 

Then I found this definition of a 'survivor' on Google's dictionary:

1. A person who survives, esp. a person remaining alive after an event in which others have died
2. The remainder of a group of people or things

So far, sounds a lot like Merriam-Webster's.  But they listed one more:

    3.   A person who copes well with difficulties in their life

Well, now we might be onto something.

Before my mother or husband comment about the chronic whining, wimpering, and neediness that come with my chronic illnesses - I'm not an ideal patient.  I complain from time to time, and certainly require far more assistance from those I live with than any of us would like.  But that being said, from a big-picture perspective I think I'm doing pretty well so far with "coping well with difficulties in [my] life".  I'm holding down a (very) demanding job, finding both purpose and support through my health activism, and even manage to stay involved with my parish & the youth group I run.  I come home to a decent (if imperfect) apartment in a neighborhood I love, to my supportive husband and ever-loving puppy.  When I survey my life on the whole, I am happy.

My medical prognosis is scary.  Much of it is unpredictable, which means any long-term plans I make must come with contingencies.  It's been a decade since my SjS diagnosis, and in that time I've begun to see the permanent damage it can cause.  My impaired salivary glands cause extensive and ongoing dental issues along with the loss of my ability to sing, increasingly scratchy voice, and more and more difficulty speaking without sipping water.  At church, I always try to receive both the host and the wine (the Body and Precious Blood) because without the wine I can't get the host down.  Years of varying levels of tendon & joint inflamation have severely reduced some of my physical abilities including most common forms of exercise and make it difficult for me to wash dishes, carry boxes, or even hold files or binders at work.  And of course, the list goes on from there.

But after this 1st decade I have new abilities, too.  I can problem solve around almost any physical limitation.  I no longer fear the dentist (how can you be afraid of a chair you've spent countless hours in), and I've learned to network like a pro (these networks are vital to a health activist, and especially one with an agenda).  Some confusing life decisions have a new clarity since I know I may not be able to do it all.  Even my work ethic improved, because I learned that a) doing my work now while I can may avoid a problem if I can't later, and b) stress is my ultimate enemy so anything I can make go away is worth doing.  I'm through looking for silly shortcuts (like not putting on gloves before going outside), and I can easily tell who is my true friend (a person's reaction to my medical situation is an acid test - no one can 'fake' understanding or caring about it).

So, am I survivor?  Are the things I've done so far enough to earn me that title (getting through high school and college, succeeding at my 1st job, the health activism projects I do, etc), or is it an honor reserved for those who have seen a challenge through to a stopping point?  I'm not being funny - I would never want a recongition I didn't earn.  But if it takes reaching an illness stopping point, I want "Loving daughter, wife, mother (I hope), and SURVIVOR" on my headstone - because there is no other finish line in a life with Sjogren's. 

If I'm not a survivor...what am I?  An ongoing fighter, a tireless warrior (hm, I almost typed 'worrier'...Freudian slip?)...perhaps, but these titles bring an air of exhaustion & imply that one day this 'fighter' may be cut down before the 'war' is won.  I'd rather not see myself as someone who has spent my life fighting so that I may continue fighting until the day I die.  I'm not a survivor, at least not as society would perceive it, and I don't want to be an eternal warrior.  On my team page...how do I describe myself?  Is there a word I can use to evoke the pride & purpose of the word "survivor" which is appropriate for my situation?  And, will there be a day I can call myself a survivor?  Or moreover...a day when society will care about my 'battle' even without that powerful word?


(Note: I respect & recognize those who are survivors, of cancer or any other battle.  We have many survivors in my family, and I was just as relieved when they earned their 'titles' as everyone else.  I don't begrudge them the support they get for even one moment; I want to know how to open people's eyes to the countless conditions we CAN'T defeat, for we need just as much support and possibly for a longer time.)

Join me for WEGO Health’s Webinar: Navigating Your Health Narrative!

 
I just registered for WEGO Health’s exciting new webinar and I wanted to share with everyone.  Here are the particulars:

What: Navigating Your Health Narrative Webinar

Who: Health Activist Panel with Lisa E, Erin B, Jenni P, and Amanda D

When: Thursday April 21^st 8pm EST (the webinar will last one hour)

Where: Sign up here and you’ll get all the details

The webinar is for anyone from seasoned bloggers to blog-readers who want to start their own blog. The webinar will cover the basics of blogging and include more advanced tips and tricks for promoting posts, managing your time, and establishing your blog “voice” and how to raise awareness about your condition through blogging. 

By signing up you’ll also have a chance to ask specific questions for the Health Activist panel that will be answered during the live Q&A portion of the webinar. You’ll get access to the archived version of the webinar!

Thanks to WEGO for creating this ready-to-publish blog post so I can easily let you know about this event!

My Oxymoronic Brother: an Autism Activist

April is Autism Awareness Month (it's also Sjogren's Syndrome Awareness Month - leave it to my family to overlap).  I call my brother the Walking Oxymoron - he's an activist for Autism.  Think about that...he's a spokesperson, a mouthpiece, an advocate, a health activist, for Autism, a condition which calls to mind images of non-verbal children trapped in their own world, unable to communicate with those around them.  My family is nothing if not contrary, and my brother fits right in.  My firm is observing Autism Awareness Month in a few ways, beginning with a special MSO offering titled "Autism - Transition to Adulthood".  In their announcement today of this program, they asked anyone with a related story to send it in so they can share them through the month.  I began to write an email just briefly outlining my brother's story, and found myself writing what must be one of my most emotional blog posts.  I don't know if or what exactly I may still send in at work, but this story - not just of my brother's success so far, but of my family who was and is here through it all - belongs here.  So this is not a guest post, but perhaps, a guest topic.  For Autism Awareness Month and for my brother, I share this story.

My brother has Asperger's Syndrome.  He presented with symptoms when he was 2 or 3 years old, and over the years he's had many misdiagnoses (such as ADD).  Fortunately, the therapies he went through were the right ones regardless of diagnosis – he went into a therapeutic preschool and was mainstreamed into the public elementary school by 4^th grade.  He had an aide with him through high school.  Obviously things were rocky – my parents had to be his advocates before the word 'advocate' came into popular use – but there was always progress.  This May he will graduate from St. Joseph's University, and is actually pursuing a more creative field than many "Aspies" (film-related fields), who generally gravitate toward left-brained jobs. 

St. Joseph's hosts a program, the Kinney Center, which is designed to provide support and resources to families with children on the Autistic spectrum as well as improving awareness.  They have a summer day camp program, which brings together kids on the spectrum with neurotypical children, so the Autistic kids are exposed to social skills and the neurotypicals learn about Autism and accept Autistic kids as their peers, removing the stigma.  My brother was selected as a counselor for the program's first year and was interviewed on the news for his role.  Additionally, the program provides various after school and evening programs during the school year to work on socialization, and my brother has been hired to teach various courses.  He is currently leading a group of high school aged students, as they prepare to make the transition he has so successfully navigated.  He is also interning with NBC in their health and wellness area, and has been interviewed on air again, for his response to the effects the show "Parenthood" is having for awareness and understanding of Asperger's children.  It's true he is anxious about making his next transition into the professional world, but the opportunities he created for himself in the past year have gone a long way toward easing the process.  He is a success story in a way no one imagined could be possible. 

He's my little brother, and I remember when he was non-verbal, biting and scratching, hating to be held.  My family will always remember moments when society was not understanding – we've been thrown out of more McDonalds than the Hamburglar – but we'll also always remember moments such as the first time he ever said "I love you Mom," at a talent show/popularity contest our high school hosted after his outstanding performance.  He recently joined me in my own awareness efforts (for 'invisible illnesses') to do a panel presentation for nursing students at Villanova University (my alma mater), and in answer to a student's question he said "she's my sister and I love her" – another first.  I thought my parents in the back of the room were going to pass out from shock.  Sometimes I wonder what he had which allowed him to make such progress that others didn't, I suppose it must be the intense support of my parents, but I also think about the battle he fought against stigma and lack of awareness that are slowly diminishing for kids these days.  And I'm watching him take an active roll in this progress, such as his work with students in high school, and I'm amazed by this person I never knew was hiding inside my baby brother.

He spent most of his life comparing his accomplishments to mine; I hope he knows now why that never mattered.  We are so much alike for all our differences…I hope the world is ready for usJ