Encountering George

I recently reached the pinnacle of my fellowship experience – I exchanged glances with George Stephanopoulos. I am not ashamed to say I have been pseudo-stalking George for years. Even my husband is well aware that the “Greek geek” (as my Face Book friends would say) has been a longtime secret crush.

While I was a television reporter in Green Bay, Wisconsin, George held what I considered my dream job – President Bill Clinton’s communications director. (My brief one-on-one encounter and lingering handshake with then candidate Clinton on the 1992 campaign trail is yet another story, but I remained far more impressed with his young spin doctor.)

These days I religiously watch George on his weekly Sunday morning show. And last week, in his orange polo shirt, khakis and leather loafers, George and I stood side by side on a street corner in Georgetown as he hailed a cab and I waited to cross. Summary: yes, he is short; no, I did not say hello; maybe I will regret that.

But I am a firm believer that when you finally have the opportunity to meet someone you admire, you must be prepared for the reality that he or she may not be all you imagined. In this case, I risked discovering that George is in actuality an arrogant, narcissistic a*#. So I played it safe and simply smiled.

The whole reason I ran into GS in the first place is that, as part of my Kennedy Fellowship, I took a course in bioethics at the historic Georgetown campus. For an entire week I sat in lecture and discussion with international experts on everything from ethics in healthcare, stem cell research and end of life issues. Although I did receive an “A” from Mr. Tjader in high school biology, science was never my forte. A week of intense reflection with groups of philosophers, theologians, researchers and surgeons awakened a new interest and, to be honest, some specific concerns.

As we listened to professors debate the relevance of key ethical decisions throughout time, as a disability advocate, I was struck by what was not said. Lectures pointing out the obvious and egregious ethical mistakes of Nazi doctors who looked the other way as they performed autopsies in the name of medical discovery or research conducted on hundreds of ill-informed, poor black men elicited extreme reaction.

But the ethical issues surrounding the advancements in pre-natal testing are where I noticed a distinct difference. While bio-technological discoveries have allowed otherwise infertile parents to conceive, the selection of embryos free of the genetic code for Alzheimer’s, and the treatment of disorders in the womb, they have also begun the annihilation of people with disabilities.

Although I suspected this was true, the facts are that the abortion rate of fetuses diagnosed in utero with trisomy 21 or Down Syndrome is upwards of 85%. Even though it is widely considered to be unethical, diagnosing doctors often suggest (this has happened to women I know personally) that it would be in the parent and child’s best interest to abort.

The broad consequences of these exam room conversations may not be entirely apparent. Do not all prospective parents simply want a healthy baby? But through the simple in-utero test for Down Syndrome, it is estimated that hundreds of perfectly healthy babies are lost. With advancements in technology, we are surely near a time in which many disorders will be detected. As professor and bio-ethicist Dr. Gregory W. Rutecki says, how do we know that baby with Alzheimer’s would not grow up to be the next Bach or Mozart?

According to Dr. Gregory W. Rutecki:

"If a diagnosis is sought by either chorionic villus sampling or amniocentesis, in the United Kingdom for example, a miscarriage incited by the procedure occurs in 1/100 women and the loss of another 300 perfectly healthy babies in addition to those with Down syndrome occurs annually.2 It seems as if culture has determined that there is no greater tragedy to befall pregnancy than a child with Down syndrome. So “bad” is the scourge of trisomy 21 that society deems it worth losing an additional 300 children without any apparent abnormality in their relentless effort to eradicate those with Down syndrome."

Beyond this grave concern is the notion that someone with a disability cannot lead a fulfilling and contributing life. I highly suspect doctors making these recommendations to expectant mothers see only fragile newborns with Down Syndrome as opposed to the interesting and successful adults I know who hold jobs, have girlfriends, and go to church. If you ask these individuals, life is good. If you ask their families, they would have it no other way.

For me, the question of whether the young life diagnosed with trisomy 21 is valuable pertains directly to me as an advocate. As I work in Congress on issues to promote better quality services and supports for children and adults with disabilities, to ensure the civil rights of all individuals, my job becomes more difficult. It is harder to form the argument that all people belong when on the front end, even our doctors do not believe it.

Needless to say, my encounters in Georgetown have left me with much to think about. I only hope I do not remain disappointed in the views of others.

Lisa Pugh is the 2009 Kennedy Foundation Public Policy Fellow. She will work on disability public policy for the House Committee on Education and Labor during the 111th Congress and is being sponsored by The Arc Wisconsin. She will live for one year with her family in Washington and return to her home in Madison, Wisconsin to share what she’s learned in January 2010.

Seeing the Sights

It is easy to get lost in Washington, DC. On the road, traffic is congested, drivers are impatient and signage, well…sucks. Even while on foot, I am embarrassed to admit, I still get lost in my office building. This week I traveled to the Senate side of the Capitol Complex on several occasions to listen to public comment – that meant riding the elevator to the sub-basement, hitching a ride on the underground subway and winding my way through the Capitol building to find more tunnels. Despite maps, it’s not as easy as one might think.

However, disorientation aside, I attempt to soak in the sights along the way. In the tunnels, flags and seals from each of the 50 states (Wisconsin’s is best, in my opinion) line the walls, and dozens of imposing stone statues inhabit the Capitol. Actually, some of those frozen replicas are a bit creepy, but that’s another blog post…

Despite inadequate official signage, landmarks abound throughout Washington – so many that even the directionally challenged could mark a path.

Recently my family and I walked beneath the reverent United States Air Force Memorial. That’s a landmark you can view for miles. We’ve also seen the Washington Monument, the White House and much of the Smithsonian up close. My personal favorite is the Lincoln Memorial – just a walk down the National Mall from my office.

Unfortunately, not all the DC sights are spectacular in nature.

My daily commute into work involves a 15-minute bus ride followed by a 30-minute train ride which lets out at 3rd and D street right near my office, and my guilty pleasure – Starbucks.

One particularly frigid day this spring, a man stood outside holding the door. He wore a tattered coat, had a trash bag of belongings at his feet and held out a plastic cup. I shivered as I hustled inside, murmuring a thank you and prepared to pay for my two dollar coffee. I couldn’t help but feel guilty. I gave this man a dollar as I walked out. And he was back again the next day. And the following.

Indeed, in downtown DC, a homeless person is literally a sight on every block. In some parks you will see dozens. Living here for any period of time, I sense it is difficult to not become jaded. Difficult to not simply look away. It is also hard to know how to help. After all, does a dollar accomplish anything?

The House Committee on Education and Labor where I work is perhaps one of the most influential entrees to public policy on social issues in our Capital – in our country. Often, when there is a movement to formulate policy to improve conditions for individuals in our society who live outside anyone’s expectation of dignity, this Committee and its Members consider a piece of it.

However, to be honest, the reports, calls and e-mails I receive from advocates in the disability community and elsewhere convince me there are simply too many tragic problems in this world, in this country, for any one committee or Congressman to fix.

Take for instance a recent New York Times article. It reports that although the state of Nebraska made headlines last year as parents sought safe harbor for their mentally ill children at hospitals, the state’s resources continue to be inadequate. Desperate or ill-equipped parents have absolutely nowhere to turn. I cannot imagine saying goodbye to my child at the state’s doorstep – relinquishing my connection as a mother simply because I had no other options. And yet, no one has found an answer.

What I am also convicted of is individuals -whether homeless, born with a disability, single mother to a mentally ill child - do not deserve to live in sub-human conditions. There may not be an easy fix, but at the very least, we all must know and care that this happens in our country. We cannot afford to look away.

As I take my kids on a ride on the Metro to see the sights, I do not want the homeless person lying in the corner to be the image they remember about our Capital. And yet, it is a sight I do not want them to forget.

Lisa Pugh is the 2009 Kennedy Foundation Public Policy Fellow. She will work on disability public policy for the House Committee on Education and Labor during the 111th Congress and is being sponsored by The Arc Wisconsin. She will live for one year with her family in Washington and return to her home in Madison, Wisconsin to share what she’s learned in January 2010.

Debriefing the Egg Roll

Being a part of the White House Egg Roll this week was, in a word, incredible. For my three children, the highlights were seeing the Obama girls’ playset, meeting Sponge Bob in person and, of course, rolling eggs. For me, just being there was spectacular. What an experience to partake in a national tradition dating back to 1878. In that year, Rutherford B. Hayes was president, it was the post Civil War Reconstruction Era, and the country was in economic turmoil - struggling to unify. Sound familiar?

Hayes is a somewhat forgettable president in my book. He campaigned on the promise to serve one term and kept that vow. His decision to host the egg roll on the White House lawn instead of on Capitol Hill (which was banned by Congress since it took a toll on the turf) is among the major bullet points in his presidential biography.

But interestingly, as I researched the history of the egg roll prior to our family’s visit to the South Lawn, I came across his inaugural speech. Here’s an ironic excerpt:

"With respect to the financial condition of the country, I shall not attempt an extended history of the embarrassment and prostration which we have suffered during the past three years. The depression in all our varied commercial and manufacturing interests throughout the country, which began in September, 1873, still continues. It is very gratifying, however, to be able to say that there are indications all around us of a coming change to prosperous times."

Wow. Can you say prophetic? Today I reflect on how Hayes’ prediction of prosperity held true for the people of that era. Will it be so for my children?

As our family left the White House grounds, green wooden souvenir eggs in hand, we recognized we would likely never have a historic experience of this magnitude again. We took tons of pictures, lingered at the wrought iron gate and waved farewell.

Our only regret during our two hour adventure was not catching a glimpse of President Obama. (Maybe he was in the Easter Bunny suit?) But, we figure the Pugh’s have a few more months to experience the nation’s capitol. Who knows what we’ll see or who we’ll meet next? I guess an encounter with Sponge Bob will have to suffice for now.

Lisa Pugh is the 2009 Kennedy Foundation Public Policy Fellow. She will work on disability public policy for the House Committee on Education and Labor during the 111th Congress and is being sponsored by The Arc Wisconsin. She will live for one year with her family in Washington and return to her home in Madison, Wisconsin to share what she’s learned in January 2010.

Splainin' On The Tonight Show

Quite a few folks have been asking me the question of the hour – what did I think of President Obama’s comments on “The Tonight Show”? In case you missed it (and are living under a rock), the leader of the free world stooped a bit low on live television recently. In fact, to repeat a favorite Capitol Hill phrase, he “threw our people under the bus”. To be more specific, when asked if he’d improved his bowling technique since the campaign when he famously bowled a 37, Mr. Obama responded with a chuckle that he had, but that his game was still a bit “like Special Olympics.” Hear audience roar.

So, what do I think?

1. If President Bush had made the same comment, he would have been lambasted.
2. President Obama’s apology to Special Olympics president Tim Shriver (instead of directly to people with disabilities) was absolutely lame.
3. The President’s comment shows some serious ignorance.

Now, perhaps you’re thinking, “But Lisa, you’re from a blue state and likely the most liberal town in America, how can you criticize our President?” Well, I can and I will, but first, let me explain something about my daughter.

By far the hardest thing I’ve done since taking this public policy fellowship has been spending time away from my family. Thank goodness for technologies like Skype and speakerphone, but with 837 miles between us, nothing can replace a hug.

I have three adorable children, but my 9-year-old Erika is the reason I am here. Although I miss her terribly, cyber-communication with this third-grader is a challenge on many levels. Anyone who knows an ounce about autism and Erika will tell you social skills and communication are not her strengths. And yet, when mom appears full-screen on the laptop singing “Who Let the Dogs Out”, she is mesmerized. (Wouldn’t you be?) With her communication device nearby (she is non-verbal), she might respond by requesting additional live “Mom Karaoke” or telling me about music class or a recent trip to Grandma’s house.

But then, due both to her challenges and the limitations of the technology, there are other days when I see her as I imagine others often do. She struggles to put thoughts together, perseverates on a message and repeats the same word (on her device) continually. Today there was a constant string of “violin”, “violin”, “violin.” I am left to consider - What exactly is she thinking? What is she trying to say?

When I have my dark moments, I recall what past “educators” have told me or said when I wasn’t present. That Erika is not thinking much. That she has little potential. That I am “in denial” about what she is really capable of.

But a mother always knows her child best. And so, during these cyber conversations, I wait. I listen. I ask questions. I know that when I get it right, she will tell me.

But I also know that, unfortunately, I have more patience than others who encounter people with disabilities. They may feel uncomfortable, have little previous exposure, or simply do not know what to do.

While others, in their ignorance, may write her off as having nothing of significance to say, I have experienced time and again that she is worth waiting for. And then it comes. We get past her brain block of “violin, violin, violin” and she says “Mr. Stein” in “music class” playing “guitar”. It is finally a two-way conversation. And it sometimes brings me to tears for the effort it takes her to prove her value.

My guess is Barack Obama (or George Bush, for that matter) hasn’t had a real conversation with a person with an intellectual disability. Why would he? Just like you and me, he likely never shared a classroom or workplace with someone like Erika.

So who is to blame for an off-handed put-down? Ultimately, I blame myself. That’s right. When I don’t ask that neighbor girl over for a playdate, when I give up rather than offer strategies and support on how to include my daughter, when I choose to not enroll in community swimming lessons because I know it will be hard, I perpetuate segregation and ignorance. The Barack Obama’s of the world will never know my daughter if I don’t make the effort.

I also blame myself because, before I had my child, I am certain I used the R-word, laughed at R-jokes or even made some myself. Bottom line is, disability ignorance remains part of our culture.

I have to remember that I wasn’t born with an accepting, inclusive attitude toward people with disabilities. Like many of my friends and family, I went to a school where the kids with special needs were educated in that classroom down the hall or perhaps the school an hour away. They didn’t go to football games. They didn’t attend dances. When I helped organize our Horicon High School class reunion a few years back, I looked through the yearbook for these kids - many were not included. We tried to invite them. None came.

That is not to say we shouldn’t expect more of our national policy makers. They absolutely require a broadened view of the world, despite their own personal experiences. But it is ultimately up to advocates and parents to take those baby steps away from segregation and toward normalcy and inclusion. In time a joke involving the R-word or mimicking a person with disabilities simply won’t be funny or acceptable because it will be about your friend.

So, is B.O. off the hook? In my book, no. As they say, “He has some splainin’ to do”. But, as I think you’d agree, the best measure of any politician’s values is not in words. Mr. Obama has four years to move beyond his Tonight Show comments with some concrete actions. Many advocates, including Erika and myself, will be paying close attention.

Lisa Pugh is the 2009 Kennedy Foundation Public Policy Fellow. She will work on disability public policy for the House Committee on Education and Labor during the 111th Congress and is being sponsored by The Arc Wisconsin. She will live for one year with her family in Washington and return to her home in Madison, Wisconsin to share what she’s learned in January 2010.

Birthing a Bill

I am now convinced that moving a bill through Congress is much like birthing a baby. Time-consuming, anxiety-producing, and quite often, painful.

Yesterday I watched as a colleague shepherded proposed legislation through what is called the committee mark-up process. She had spent days and late evenings on the phone with everyone – from Whigs to the White House (well, maybe not Whigs) - making deals, striking sentences, adding pet projects. As she returned from the committee chamber, victorious in moving her “baby” out of committee, I asked if the worst was over. She replied, “Oh, no. It’s just begun!”

That’s when it struck me. This was legislation by artificial insemination!

You see, my co-worker’s bill hadn’t taken the easy or more natural route. Bills which do that are “passed on suspension”. Suspension bills have no obstacles – no real debate – sometimes the conception even happens without fanfare. (Ladies may find it easier to follow my analogy.) Like a recent “Recognize National School Breakfast Week” bill – there’s not a lot to discuss. And, just like a Mom with octoplets, we often pass several suspension bills out of committee each week. Piece of cake.

What my colleague had just experienced, however, required intense consultation and a delicate combination of support. When the bill (on national service) received nearly unanimous committee approval – she finally had assurance. Her legislation was on its way. But she still had months to go before delivery.

This week I was privileged to coordinate a hearing in our committee. This process often comes before legislation is ever conceived, much less discussed. It’s as if Congress is contemplating, “Should we really make a baby out of this?” I have been researching my topic (education in alternative settings) for weeks, and invited witnesses from across the country to travel to Washington to share their views. Maybe the Congressional members heard today’s testimony and thought, “It’s time to start a family of legislation on this topic.” Or maybe not. It may be months before we know.

When a bill moves out of our committee, that’s when we get a sense for how difficult the labor (pun intended) might be. Will the Senate or the Republicans be amenable to collaboration (a.k.a. numbing the pain) or are they gearing up for an all nighter. If you’re a parent yourself, you know most times the details of delivery are outside of your control. (No scheduled C-Sections on the House floor.)

While the process of “bill birth” on C-SPAN may not be the same exhilarating viewing as baby’s first bath, it is exciting for my fellow political geeks. Especially those who’ve had a hand in the process.

I apologize if my analogy is a bit simplistic. At times my DC experience seems so surreal that it’s helpful to reflect on what I consider the core of my work. Being a mom and possessing a vision for how I’d like the world to look for my own children helps me to write every word, engage each conversation, deflect any obstacle.

So, while I haven’t yet had the opportunity to completely conceive of and nurture a bill, I have had the blessing of raising three children. And although I wouldn’t call it easy, it is absolutely rewarding.

Lisa Pugh is the 2009 Kennedy Foundation Public Policy Fellow. She will work on disability public policy for the House Committee on Education and Labor during the 111th Congress and is being sponsored by The Arc Wisconsin. She will live for one year with her family in Washington and return to her home in Madison, Wisconsin to share what she’s learned in January 2010.