On Asking Why Not by abstraks


									                                 On Asking Why Not
                   Prepared Keynote Remarks of Bob Williams1
                       At the DC Office on Disability Rights
                Possibilities: Leadership, Collaboration, and Change
                  for Disability Rights in the District of Columbia
                                   October 7, 2008

Good afternoon and thank you very much. It is a pleasure and a privilege to address the
first of what will be many I believe successful Annual Meetings of the DC Office of
Disability Rights. I recently marked a seminal anniversary. 30 years ago in August 1978,
I came to DC to earn my Bachelors from George Washington University the first in my
family to do so. In recent years, my wife and I had to move out of the area for a while.
Therefore, it was quite the opportunity when Judy called me 18 months to ask that I join
the extremely committed and exceptional team she has created at DDS. To both leap at
the chance of doing so and the chance to move back home to the District of Columbia. A
city like the Nation, which can be summed up in one word. Possibilities.

And since it is such an important part of the theme of today’s conference I want to spend
a couple of minutes dissecting that word possibilities. Because to me there is a yin and a
yang to them. Possibilities typically come in one of two vastly different forms. The
Probable. And the Improbable. Of the two, it’s typically the latter -- those things that are
least expected. Frequently even unfathomable to the great majority of people that often
have the greatest impacts on all of us. Good, bad or ugly individually. And on our
families, community, country and world as well as the times we live in.

Consider the following for example.

Except for Al Gore and one or two Nobel laureates who would have thought it plausible
in the 19 80’s that by 2008 the polar ice caps would be melting at the rates that the
scientific community now reports they are.

Who would have ever thought it plausible that an African American and a Vietnam
Prisoner of War who was almost left for dead a woman Governor from Alaska, a former
First Lady and a guy name Joe Biden? would redefine Presidential politics. Not just this
year but I believe in every election to come. What pulp fiction writer could have possibly
spun that plot and then got it published.

And tragically, who could have predicted 9/11? Who could have possibly predicted
9/11? Well as it turns out, we know there was a few that did exactly that. And there
were others who while they could not connect all of the dots nonetheless did everything
they could to warn their superiors that something others dismissed as improbable or

  Bob Williams is the Special Assistant to the Director of DC Department on Disability Services and
formerly served as the Commissioner of the Administration on Developmental Disabilities and a top
advisor to HHS Secretary Donna Shalala during the Clinton Administration.
completely unthinkable was about to happen. People after all do not learn how to fly a
plane without learning to land it without having a rather compelling and extremely
disturbing reason for doing so. A few who as I said recognized that fact and acted to
warn the rest of us. But if you red its report you know that the 9 11 Commission’s
found that at the root what led to the events of that day was a collective failure in
imagination. The failure to imagine that our worst nightmares could come true and
then to act on it.

The failure to imagine and take a giant leap outside of our comfort zone to. Number 1:
Recognize that the impossible and implausible can and often does becomes the new
reality. And Number 2 to integrate such new possibilities into our thinking and to be
able to respond and shape them rather to be shaped utterly by them. We have seen
what happens when there has been a failure in imagination and leadership in other
venues as well. The space shuttle disasters. Katrina. The war. The recent economic
turmoil we are experiencing. To name but a few obvious examples.

But just as a failure in imagination to see beyond the obvious and the status quo is
frequently our greatest flaw the exact opposite has been true through out our history as
well. Paraphrasing George Bernard Shaw. Bobby Kennedy use to frequently say that
moral leadership requires us not to see things as they are throw up our hands and
simply ask why. True moral leadership in our country he would say requires us to
dream things that never were and ask why not. And by asking why not he did not
mean just flippantly posing the question and then walking away. But rather asking it
and then vigorously acting to answer it. In the affirmative.

Certainly, we see this in the leadership of great Americans. Harriet Tubman did not
return south hundreds of times to lead others to freedom after escaping slavery herself
because she was impervious to the possibilities and probabilities confronting her on
every trip. She knew with certainty that she would be tortured and lynched if caught.
But she also knew the improbabilities of her own freedom. And because she escaped,
Tubman asked herself the question. If I am free, why not free others.

Whether it was Lincoln fighting a civil war to end slavery and give birth to a new nation.
Franklin Roosevelt lifting up the American people from the depths of the Great
Depression. Rosa Parks sitting down on a bus in Montgomery to claim her birth right
and that of all of us to be afforded equality dignity and or Harold Betty and Joy Evans
challenging the unjustified institutionalization of over a thousand District of Columbia
residents in Forest Haven. They and countless others like them knew well the odds of
succeeding were stacked against them. But they likewise knew that simply accepting
an insidious status quo was no longer an option.

Fortunately, 50 years ago my parents were guided by the same mind set and
imagination. When I was born in 19 57 many professionals and other nay Sayers told
my parents institutionalize me at a place called the Mans field State Training School in
the small Connecticut town which was the next one over from the one we lived in. A
place as it turned out I first saw the insides of one summer when I was in college
volunteering for the Connecticut ARC and helping to gather evidence for a law suit that
eventually closed it down. And as I walked the back wards of first Mansfield and
then as a young Court monitor Forest Haven peering into the eyes of people lying on
silver floor mats and caged steel white cribs I saw a mirrored image of what my life
might have been.

When I was young, my parents never asked why they were being advised to
institutionalize me. Instead, their attitude was why not raising Bobby at home along with
my four older brothers and sisters. Fortunate for me, we had a large extended family
allowed them to do just that. Nine years later when the tutor the town we lived in sent to
my home refused to even try to teach me to read or write my parents like many other
parents of children with disabilities of that day moved to a Connecticut town about 60
miles away where I could get educated. And it not that it all went swimmingly from that
point on, that decidedly was not the case. I went to school literally in a Sunday school
room at a church for a couple of years and then went to school in the next town over
because there was no accessible school in Newington. But I and a half other dozen other
of my class mates did learn the three R’s and the one T. Reading Writing Arithmetic
and Typing. I learned something else during those formative years as well.

I learned that my parents and really my entire family. My brothers and sisters
grandfather aunts and uncles held out high expectations for me. Looking back, they were
not just improbable but quite outlandish expectations. They expected and imbued in me
the strong expectation that I would go to college that I would work pursue a career. In
short, they believed that I could and would have the kind of life that all parents want their
children to have. Not because any of us were oblivious to my disability those things that
I could not do. Or, the work it would take on all of our parts to realize those goals. But
because we tended to focus more on my strengths and accomplishments. We focus on
my potential and setting next steps and long-term goals that help me to develop and
achieve that potential. That basic framework has served me well over the years.

So in my view we would be equally well served as a city by using much the same
tact with respect to advancing the purposes and aims of the Americans with Disabilities
Act. To "assure equality of opportunity full participation, independent living and
economic self- sufficiency". by eliminating discrimination, segregation and stereotyping
on the basis of disability. Advancing these basic aims requires us as a city to take three
steps. First to eliminate disability discrimination we must be ever vigilance to what it
looks feels smells sounds and yes sometime even tastes like in all it varied and
insidious forms. Similarly just as ageism racism sexism homo phobia and other fear
based biases have mutated and in some ways grown more resistant over time so has
and so will disability based bias and discrimination. And, we must be aware and ready
to confront this as it happen.

The second and more difficult thing I believe we must do goes back to where I began this
rant of mine. If we are truly serious about assuring equality of opportunity full
participation independent living and economic self sufficiency for all children adults
and older persons with disabilities here in the District of Columbia we must let our
imagination lead us. Not in any whimsical, unrealistic way. But rather in a no nonsense
brass tacks sort of way. We must use our collective insights to first size up how far
we have come as a city in assuring and advancing equal opportunity for those with
disabilities. And clearly critical progress has been made in the three decades that I have
called DC my home. Today we live in one of the most accessible cities in the world. We
have one of the most readily accessible public transit systems in the world. Similarly
today close to two thirds of all District residents use the Internet which I believe is the
greatest equalizer in our life times and indeed any other. The Internet has the great
potential to liberate and transform the everyday lives and futures of many marginalized
groups and individuals. And I think this can and must be made to be particularly true
with regard to people with significant disabilities our families and those that work for
and with us.

Furthermore in the last generation DC has swung opened the doors of education to
students with disabilities and it has closed the doors forever more the doors of Forest
Haven. And as Mayor Fenty recently reported more people with developmental
disabilities are now receiving the Medicaid waiver they need to live with their families
or homes and apartments of their own choice than there are those living in more
restrictive ICFMR facilities. A trend that will intensify over the next couple of years as
DDS implements the first phase of the multi million dollar Money Follows the Person
demonstration grant from the federal Centers on Medicare and Medicaid Services. A
grant that will ultimately enable many institutionalized people with the full range of
significant disabilities to access the services supports and opportunities they need to
move back into and make a life of their own choosing and direction in this city we love.
So tremendous progress has been and continues to be made and a strong foundation
that is firm and ready to be built upon has been squarely laid.

However, we must also assess not just how much further we need to go. Far more
critically, we must as a community come to a clear consensus on where it is that we want
to be going. On how we want to get there. On when we want to arrive. And on what
road posts and benchmarks we want to use to measure our progress both in time and
most importantly real results for people in reaching or at least advancing toward this
goal. This requires us to be bold in imagining and envisioning how over the next 5 to
10 years the District can and must more fully become a city of Universal Access and
Opportunity for all of us that live here.

It also in turn requires us to take a third step. Specifically it requires us as I just alluded
to identify both the barriers we will encounter along our way and the benchmarks that
we will need to set and ultimately exceed over the coming decade. So I want to spend
the remaining time I have with you briefly outlining what I believe some of those major
barriers and benchmarks are for ameliorating and eventually eliminating them. And
for better or worse these are my views and my views alone and do not necessarily
reflect those of DDS or any other person or entity that has ever had the dubious
distinction of knowing me. That said however the three areas I will touch on next
certainly would come to no surprise to anyone here. In fact in year 2000 my boss at the
time Health and Human Services Secretary Donna Shalala and then Surgeon General
David Satcher felt so strongly that all three issues are so integral to not only the
health and well being of children and adults with disabilities but that of our country
that they addressed them in Healthy People 2010 the public health blueprint for our

The first of these Healthy People objectives I will discuss relates to the need for inclusive
meaningful education. The objective is to: “Increase the proportion of children and youth
with disabilities who spend at least 80 percent of their time in regular education.” End
quote. The District as we know faces a steep achievement curve in meeting and
exceeding this objective. According to the U.S. Department of Education as of 2000,
fully three fourths of special education students in DC spent most of their time in either
separate classes or separate schools altogether. Conversely only 4 percent ---- let me say
that again only ---- only 4 point zero percent of such students spent 80 percent or
more of their time attending regular classes with their non disabled peers. Nationally
the comparable figure is about 40 percent. Educational outcomes for DC students with
disabilities are equally dismal. Only about one in five special education student’s
graduates from school with a diploma in DC compared with nearly half of such students
nationwide. In addition, fully 60 percent of DC special ed. students drop out of school.
As a city, we did reach these levels in a single year. Nor in a single decade. But we owe
it to the students of today the students of tomorrow and yes those who lost out so much
in the past to set out a clear vision of what a superior public education can and must
look like for all students in the District of Columbia. And set about achieving that
vision. Student by student, school-by-school, benchmark by benchmark.

We must take much the same tact with respect to a second Healthy People 2010
objective which calls for the reduction in the institutionalization and other congregate
care placement of children and adults with disabilities. As I have already noted,
significance progress has been and continues to be made in this critical area. Over the
next three years with support from the Money Follows the Person grant DDS will support
up to 400 persons now living in ICFMR facilities to move in to homes and apartments of
their own choice. Plans also call for the MFP initiative to be expanded to benefit
individuals who are needlessly institutionalized in nursing homes, psychiatric facilities
and other congregate care settings in the District. This in my view is crucial. However,
we also must go one-step further. Nationally and here in the District the vast majority
of children adults and elderly Americans with significant disabilities who require on
going supports live not in institutions but in the community. Many receive all the
services and supports they need from their families from friends and/or Medicaid and
similar programs. Nationally we know however that a little more than 25 percent of
those individuals requiring the greatest assistance do not get all of the help they need
with such basic needs as eating dressing using the bathroom managing their day or
their money. Those that live alone or with aging parents are particularly at risk of having
many of their needs go unmet. And often can face far greater risk of injury illness
social isolation segregation depression institutionalization and in some cases even death
as a result.
Therefore, in my view our approach to reducing unjustified institutionalization as the
Supreme Court has described it must be two fold. We must of course seek to remedy it
when it occurs. However, we also must place at least equal emphasis on better tracking
and meeting the unmet needs of those with significant disabilities already living amongst
us. Confronting these issues in this economy will not be easy but ignoring them would
create and perpetuate dire consequences. Moreover, I am glad to see ODR taking these
challenges on through its Olmstead Planning and implementation activities.

The third Healthy People 2010 objective I want to commend to you as an important
benchmark for us as a city to set is that as a long term benchmark is that of
eliminating employment rate disparities between working aged adults with and without
disabilities. here again the current state of our economy and the fact that the
employment rate among people with significant disabilities has held at about 30 to 45
percent at best over the course of all of our adult life times makes realizing this goal
seem unrealistic and fanciful. But let me suggest that one reason why we have
abjectly failed to significantly increase the employment rate of people with significant
disabilities is that we have abjectly failed to recognize. Let alone enhance the
employment and economic prospects of the approximate one third of such Americans
who do work. About 95 percent of people with significant disabilities who work do not
receive SSDI or SSI nor has Medicare or Medicaid coverage. However, most
nonetheless have household incomes below or near the federal poverty level. Many of
those that are employed even on a full time basis are uninsured. They are truly the
forgotten workers. And especially now if we are entering a recession I respectfully
submit we must focus some long over due attention on helping these workers to retain
their jobs and receive the support they need and in my view have earned to keep them
from falling into the abyss that they have been peering into for far too long.

Finally let me propose a fourth objective that is not included in Healthy People 2010.
But that is consistent with both efforts in this country and internationally to
substantially reduce the grip poverty has and is steadily gaining over the everyday lives
and futures of millions of people families homes and communities nations and
economies world wide. And the objective I want to propose which many will no doubt
see as wildly unrealistic and utopian is this. To cut disability based poverty in our city in
half within ten years. Since time immemorial, poverty and disability have been more
than mere synonyms of each other. They have been seen as immutable parts of a self-
fulfilling prophesy. But the magnitude and pervasiveness of this problem I believe is
crippling. Yes crippling the civil rights of people with disabilities and the effectiveness
of the ADA. Disability poverty takes a heavy toll on families of children and adults with
disabilities. it takes a heavy toll on working age and older people with disabilities. And,
last but not least, it exacts a heavy toll on the mostly low wage, no fringe benefits
workers who provide many of us with the personal assistance and support that we need
to live our life to the fullest. Let me assert that when you add up the men, women and
children with disabilities that fall into the three groups I’ve mentioned, you come would
come up with a significant proportion of those are among the poor and the working poor
in our country today. That’s why I so fervently believe as a city and a nation the time has
come to reduce the effects and consequences of disability poverty rate by developing and
expanding employment and career advancement strategies as well as home ownership
and other asset development opportunities for all of these individuals and their families.

Achieving as well as setting and tracking the benchmarks to achieve the types of broad
and bold objectives I have just outlined will not occur over night. Achieving these aims
to paraphrase my lifetime hero FDR will require that we be bold and persistent. Bold and
persistent in our imagination, creativity, leadership and collaboration. And bold and
persistent most of all in our commitment. No one District agency nor the entire DC
government can take on issues like these alone. It will take a partnership of
government, disability and aging community, business, education, religious,
philanthropic and other civic leaders working together. Today’s conference will be I am
certain a major launching pad for this endeavor. In addition, I hope in some small way
what I have said here will contribute to its success. I want to thank you first in being so
indulgent to my lunchtime rant. And for your continuing commitment to advancing the
civil rights of all District residents. Please become my assistive technology and give Eve
Hill and her staff, my boss Judy Heumann and yourself of course a big hand. Thank you
very much.

To top