Disability Advocate Ellis Keeps Taking Next
Step Forward
Independence Today is conducting a series of
interviews with leaders of the disability rights and independent living
movements. This issue features an interview with nationally known disability
rights advocate Ethan B. Ellis.
By Kathi Wolfe
Many people, when they reach the three-quarters of a
century mark, just want to kick back. After years of full-time work,
they’re ready to reap the rewards of their labor – to spend time with
their families, travel, enjoy their hobbies, volunteer for a favorite cause, or
at most, work part-time. But, few of us are like nationally well-respected
disability advocate Ethan B. Ellis.
Retirement, even semi-retirement, isn’t on the radar
screen for Ellis, age 75. After more than 40 years of engagement in the
fore-front of grass-roots advocacy at the local, state and national level, he
continues to work full-speed ahead for social change for people with
disabilities and others who our society devalues. 
Currently, Ellis, who has cerebral palsy, is president and
chief organizer of Next Step, a national disability organization, based in
Edison, N.J., committed to social, economic and political change. In addition,
he teaches disability policy as adjunct professor at University of Medicine and
Dentistry of New Jersey School of Public Health.
Ellis was born in New Brunswick, N.J. and graduated from
Highland Park High School in Highland Park, N.J. in 1951. He graduated from
Oberlin College with majors in political science and psychology in 1956 and
earned an M.A. degree in vocational rehabilitation from New York University in
1958.
In the early 1960's, Ellis directed vocational services at
Bird S. Coler Hospital and later supervised curriculum development specialists
at Mobilization for Youth, a demonstration community action agency on the Lower
East Side of New York. City.
In 1968, Ellis joined the staff of the New Jersey State
Economic Opportunity Office, where he later headed a unit that provided
technical assistance to local community action agencies and other anti-poverty
programs.
In 1976, Ellis helped establish the first legal program
for people with disabilities in the country at the N.J. Department of the
Public Advocate. As Deputy Director of its Division of Advocacy for the
Developmentally Disabled, he founded and was the first president of the
National Association of Protection and Advocacy Services.
After leaving his position at the Public Advocate in 1985,
Ellis worked as a consultant, directing the staff of the Governor’s Task
Force on Services for Disabled Persons in New Jersey and the Task Force on the
Prevention of Developmental Disabilities in Delaware. He also served as a
management consultant to the Commissioner of Rehabilitation Services
Administration of the U.S. Department of Education and organized support for
the Americans with Disabilities Act in New Jersey and in Washington, D.C.
From 1991 to 2006, Ellis was executive director of the New
Jersey Council on Developmental Disabilities. During his tenure there, with
“vigorous advocacy from the Council,” Ellis said, New Jersey began to
close its developmental centers, increased funding for educational and
community supports, adopted family support legislation and launched the
Governor’s Inclusion Initiative, a demonstration project that shifted
control over resources to the consumers who use them.
Before joining Next Step in 2007, Ellis was executive
director of the Alliance for Disabled in Action, an independent living center
in Central New Jersey. He is a member of the center’s board of directors
and says that the Alliance and Next Step “are planning several
collaborative projects.”
Ellis and his wife Janet Chiorello-Ellis have been married
for ten years. “We were both born on November 25,” Ellis wrote in an
e-mail, “she 32 years after me.” Their son Ethan James will be three
on January 4, 2009.
During a wide-ranging e-mail conversation, Ethan discussed
his career as well as his views on life, people with disabilities, and
political, social and economic change.
Full disclosure: I am a friend of Ellis and he has been a
mentor to me. I know well his intelligence, commitment to change and impatience
with both bureaucracy and injustice (often masked by his dry wit and mild
manner).
Below is Ethan’s interview with IT News. (IT News
questions are in italics.)
Did you identify as someone with a disability when you
were growing up? Did you try to pass {as non-disabled}? Were you in
“special ed–segregated” classes in school? How did the other
students
react to you – to your disability?
I was denied entrance to a public elementary school so I
went to a private one until 8th grade. I was elected president of
the student council in public high school and vice-president of the student
council in college, and was active in a large number of extra-curricular
activities in both.
My disability was so obvious that I couldn’t pass so
I became a “super-crip.” But I never felt I really fit in. Sadly, I
probably did and didn’t know it.
How did you get involved with disability rights –
with disability rights advocacy?
I got involved in the Black civil rights movement in the
early 1960's because most of the people I worked with at the rehab hospital in
NYC {New York City} were African-Americans. As a result, I drove to Washington,
D.C. to join the ML {Martin Luther} King March in 1963. That led me to a job at
Mobilization for Youth on the Lower East Side,...a community action agency. The
day before I went to work there, the Daily News {the “New York Daily
News”} front page charged that it had 50 communist employees. In all I
worked in the Johnson anti-poverty program from 1964-1976.
At that point, Congress established the DD P&A System
{the Protection and Advocacy system for people with developmental
disabilities}. It was the first I had heard of a disability rights movement. I
was hired by the NJ Public Advocate that year and I found myself right in the
middle of it. When Reagan tried to gut the 504 and P.L. 94-142 regs
{regulations for the Rehabilitation Act of 1973 and the Education for
Handicapped Children Act}, I played a leading role in stopping him.
All this goes to prove my two rules about life: Half of
life is just showing up; the other half is being in the right place at the
right time. If you do the first often enough, you increase the chances of the
second happening. Now that I’m seventy-five, I’ve added a third rule:
the longer you live, the better the chances that following the first two will
make life interesting.
How do you see the disability rights movement in
relationship with other civil rights movements?
They’re all rooted in the basic desire to be
recognized as human beings, to be included in society as equals. They copy
strategies from each other and tailor them {to} their individual needs.
African-Americans organize geographically because they’ve been ghettoized,
women rely on numbers because they’re the majority; people with
disabilities are disadvantaged because they are dispersed geographically as
well as by class and have difficulty traveling, but it takes less of us to look
like a crowd because of all the equipment we use. I don’t know that much
about gay, lesbian {bi-sexual} and transgender tactics, but you can fill in the
blanks.
Unfortunately, all of their efforts have failed for the
same reasons: their failure to demand and gain social and economic rights: the
rights to adequate shelter, food and water, free healthcare, economic security
and intellectual development. Without economic and social rights, civil rights
lose much of their meaning. It doesn’t matter if the restaurant is
accessible if you can’t pay to eat in it. It doesn’t matter if you
can vote if you just died from a disease that richer folk don’t get or are
easily cured of.
This hyper-capitalist society will give you your civil
rights if you raise enough ruckus. They just throw you in jail on the way to
victory. That’s what they did to King. But when he joined the Memphis
garbage collectors’ struggle for economic equality, they killed him.
In this society, the divisions by class are much stronger
than any resulting in differences in race, religion, ethnicity, gender or
disability status. In every case that division has stopped civil rights
movements short of achieving the benefits we expected of them.
Demographic data bear that out. By every measure,
African-Americans are worse off today than when the 1964 Civil Rights Act was
passed. They are poorer, less well-educated, less well-housed, less healthy,
more apt to be put in jail. On average, women are less well off by most of the
same standards than when Title IX was passed. The same thing happened to people
with disabilities after we passed the ADA in 1990.
The key words here are “on average.” Sure, some
of us, very few of us, escaped into the middle and upper classes. That’s
why I call us “the escapees.” Our escape was due to a variety of
innate, accidental and arbitrary factors. After we escaped, our movements
fractured along class lines because the “escapees” were the most
likely leaders of the movement and most of them were no longer interested. They
got theirs and didn’t want to be identified with those they left behind.
How did you get connected to Next Step? Is Next Step
working in coalition with other groups?
I’ve been a board member of Community Access
Unlimited for 20 years. It’s a progressive agency that serves people with
developmental disabilities and disadvantaged youth. Five years ago, the board
concluded that providing services would never be enough to include people with
disabilities in society as equals; that would require restructuring the
political economics of the whole society, the kind of radical change that only
social movements bring about.
They decided that people with disabilities should be part
of such a movement, put up some seed money to make that happen, and asked me to
lead the effort...
What impact do you think Obama’s presidency will
have on people with disabilities? What promises to individuals with
disabilities has Obama made? What promises {to the disability community} do you
think the Obama Administration will keep?
Until we change the social, economic and political
structure of this country, none of us who belong to devalued groups will be
able to live with pride as equals in it. That is the magnitude of the change it
will take.
If we’re not willing to fight for that magnitude of
change, we are tacitly giving up our birthright to equality; we are acquiescing
to living lives of discrimination, exclusion and poverty.
Viewed through that reality, we should not expect anything
substantial from either major political party; they are both bought and paid
for by economic interests whose only interests in us is whether they can make
money off of us. We are not real people to them and to the politicians they
own.
Obama is no exception. He is only the lesser of two evils.
It is symbolically cool that he is Black, but he is an “escapee,”
willing to leave the rest of us behind to make it big in a class he wasn’t
born in.
Obama’s disability platform contains the usual
liberal promises: signing the UN Convention on the Rights of People with
Disabilities, full funding of IDEA {the Individuals with Disabilities Education
Act}, more jobs in the federal government and so forth.
During the campaign Obama declined to speak to disability
groups like he did with other special interest groups a fraction of our size
and he only consistently acknowledged us in his speeches during the last two
weeks of the campaign, despite aggressive urging from me and other members of
his Disability Policy Advisory Committee. In short, he did not recognize us as
an organized political bloc despite our numbers.
I think he’ll do for us what his liberal views and
the state of the economy allows but I don’t expect much more. That’s
scary because the lousy economy may tie his hands and when the economy goes
south, discrimination against us and other minorities usually rises as the
majority draws in on itself in fear.
Even though you don’t see much hope in Obama or
political parties, you still want people with disabilities to stick with the
fight?
Of course, people with disabilities must keep fighting for
our social, economic and civil rights. Our other choice is to become
vegetables. The first step is to become politically active – register,
vote, agree on a platform, support candidates–do whatever it takes to
become recognized as a powerful political bloc. Then we must build local, state
and national power through coalitions with others with whom we have common
objectives–the poor, racial and ethnic minorities, women–lesbian,
gay, bisexual and transgender people. Our struggle is all about combining
principles with power. It will take both to turn society upside down and shake
it until it lets us in to live with pride as equals.
What can independent living centers do to try to get
folks with disabilities, who often are living in poverty, involved in the
political process?
I have no expectations from independent living centers.
Most have become too much like traditional service providers and are too
dependent on the man’s money to bite the hand that feeds them.
Organizations like New Step will have to fill the breach.
Why is it so important for people with disabilities to
speak for themselves rather than have {non-disabled} professionals {people
working in the field of disability} speak for them?
Most professionals don’t want for us what we’d
choose for ourselves. They make their living off of our dependency and would be
out of a job if we got what we really wanted.
Have any historical or political figures influenced you
in your advocacy work and thinking?
I worked closely with {the late renowned disability rights
icon} Justin Dart, Jr. and grew to respect his integrity. Theoretical and
practical political economists have greatly influenced my thinking. Karl Marx
laid the groundwork for much of that thinking, not the straw man we’ve
been attacking for almost a century, but the humanist philosopher who said
toward the end of his life that he wouldn’t have ever been a Marxist, so
much had both sides debased his thinking.
You may not want to talk about this. But if you feel
like sharing, would you talk about your struggle with alcoholism? How did this
struggle and your becoming sober, impact your life? What are your thoughts
about alcoholism–addiction–and people with disabilities?
I started drinking when I was 23 and discovered almost
immediately that I was good–too good–at it. I was an active drunk for
15 years and quit in 1974 and had one drink a year later to quiet a gall
bladder attack. That scared me worse than the pain and I haven’t had one
since.
I think it’s important that I talk about this freely
and I do. Studies show that substance abuse, including alcoholism, is higher
among “crips” [people with disabilities}, than it is in any other
group, including Native Americans. And so is suicide. Our dependence on others
who we can’t offend makes us turn our anger inward, against ourselves.
We’re addicted to self-destructive behavior. That’s a major issue
we’re trying to solve in Next Step. We can’t change the world with
broken people; we have to heal ourselves because nobody else will. Our movement
depends on it.
What makes you keep going with advocacy at a time when
you could just be enjoying yourself?
I have no choice. If I went fishing, all the prejudices
I’ve been fighting would just go with me. Besides, I enjoy a good fight.
But how do you keep from getting burnt out?
I find life endlessly engaging. At my age, a new book or
idea will make me re-think everything! My three-year-old son is a wonderful
gift who keeps me young.
For more information, go to www.gonextstep.org.
Kathi Wolfe is a writer and poet. She writes extensively
on disability and other socio-cultural issues. |
