International News and
Views:

Interview with Lex Frieden,  Newly Elected President of Rehabilitation
International

By Kathy Martinez ([email-masked])

Introduction

I first met Lex Frieden in Jakarta,
Indonesia in 1995 where we sat on a panel together, discussing international
trends in independent living. I was immediately taken by his charming southern
drawl and impressed by the amount of knowledge he seemed to possess in so many
areas.

Since then, I've had the pleasure of
working closely with him on a number of international projects. When I heard he
was seeking the RI presidency, I felt in my heart it would be a good fit. Not
only is he a well-respected long-established disability rights activist, but
also the Senior Vice President of The Institute for Rehabilitation and Research
in Houston, as well as a professor at the Baylor College of
Medicine.

The beginning of the 21st century
presents many interesting challenges for people with disabilities all over the
world, including: our continuing struggle for access to adequate health care,
education and self-sufficiency. As we gain experience in being in control of our
own lives, we will need to learn how to blend the best of the "medical model"
with the newer "social model" approach to disability issues. It seems to me that
Lex's combination of activist and professional skills can provide a much needed
bridge between the disability and rehabilitation communities.  The
following interview highlights his priorities and vision for the next four years
as RI President.

Lex and his wife, Joyce, share
their home with Grandson, Trey, Lex's attendant, Mac Brodie, and Great Dane,
Governor.
(Photo appeared in the Houston Chronicle, Sunday, October 25,
1998. Taken from http://home.houston.rr.com/frieden/)

Interview

KM: In all the press releases
I've seen, it says that you won on a disability rights platform in the election
in Rio de Janeiro. What exactly does that mean?

LF: Well, I would say the
electorate of Rehabilitation International, the members who have the right to
vote in the election, had a choice between two candidates. In my opinion, one
was an academic, a scholar, and an articulate orator who speaks authoritatively
about certain issues pertaining to people with disabilities.

On the other hand, from my
perspective of course, I hope I am regarded as a scholar, researcher and
administrator who happens to have a disability and who is also an activist and a
disability rights' proponent. I hope I am perceived as working to implement the
concept of leadership by people with disabilities and as working for inclusion
and equal opportunity for people with disabilities. Again, that's in contrast to
the other candidate who has spoken and written from a mostly academic viewpoint
about the value of special accommodations and the need for exceptional services
for people with disabilities.

So, I think that those who voted for
me saw me as a candidate who represents the contemporary paradigm of empowerment
of people with disabilities, as opposed to an older paradigm. I would say that
that is probably the explanation for why some of the press references have been
made to a "disability rights platform."

KM: What do you think are the
most important things for RI to accomplish in the next four years?

LF: Well, I think the most
important goal unconditionally is for RI to work in harmony with other
disability and human rights organizations to secure adoption of a United Nations
Convention on the rights of people with disabilities. And I think that must be a
strongly framed convention that includes a substantial enforcement mechanism.
Furthermore, I think that the convention must incorporate other structural
changes within the United Nations monitoring system of rights and their
enforcement.

KM: To follow up, how do you
see a new convention being more effective than just including disability in
existing conventions?

LF: Well, I don't think they
are mutually exclusive. As a matter of fact, I personally believe that we should
not hesitate to advocate for the existing United Nations conventions and other
instruments of the UN to be amended to include disability.

But I also think it's important to
have in addition to that a free-standing convention that focuses strictly on the
rights of people with disabilities. One reason is that I think it's very
difficult to locate all the United Nations rules and to become familiar with all
of them.  I find it's challenging to get an overview or holistic picture of
disability by going from one convention to the next, and trying to pull out of
that what pertains to people with disabilities. I think there's a high
likelihood that countries will be better informed by having disability issues
addressed in a focused convention that relates specifically to the rights of
people with disabilities.

So that's one point that I would say
supports a free-standing convention.

Secondly, I think it's very
difficult for disabled advocates and their partners around the world to get
excited about adding disability to a lot of extant rules, some of which may not
be very well enforced or very well-known. Also, I think it's much easier to
develop a campaign, so to speak, if we have a single well- conceived instrument
that establishes a United Nations commitment to disability rights at the level
of a convention.

KM: How do you see that as
increasing the feeling or the sense of the public that disability is a human
rights issue?

LF: As an example, I can
liken it to our experience in the U.S. with the Americans with Disabilities Act.
In my view, on July 26, 1990, we probably educated and sensitized and made aware
more people about disability rights' issues than at any other collective period
of time in the history of the world. Because on that day at ten o'clock in the
morning East Coast Time, CNN World News went live to the White House and
broadcast all over the world extensive coverage of the President of the United
States signing a disability rights law in front of a crowd of over 3000
advocates and allies. This made that law significant for every person, not just
people with disabilities. Because every person uses the news media as a way to
prioritize what's important in their lives and in society.

In addition to CNN, every major
newspaper and television and radio outlet in America carried the passage of the
ADA as the lead story.

So, on that single day, and in a
fairly collapsed period of time, it's my contention that more of the general
public was exposed to the concept of disability rights than could have been
exposed over a longer period of time with us doing ordinary education and
advocacy as we always have done and will do.

And I think the same would be true
for the convention on rights of people with disabilities. Through this campaign
process we will have the opportunity to educate, inform and sensitize literally
billions of people around the world to issues pertaining to rights of people
with disabilities.

KM: Considering both the
impact of media coverage and the influence of the UN, can you comment about how
the International Year of Disabled Persons may have contributed to increasing
worldwide disability awareness as well?

LF: Actually, I think that
the International Year of Disabled Persons, which was constituted by the United
Nations, had a great impact around the world, certainly a greater impact outside
the United States than inside.

And that is because many countries
actually do pay more attention to United Nation edicts and press releases than
do people in the U.S. From that standpoint I think a campaign for a UN
convention really can address millions of people in developing and poor
countries, and countries that depend on the United Nations for a lot of their
information and for help in establishing policies and priorities. Further, I
think whatever impact we saw with IYDP -and the subsequent Decades of Disabled
Persons--will be magnified and amplified a thousand times, if we're talking
about a convention which in my understanding is the highest level instrument of
rights enforcement that the United Nations can grant.

KM:  Besides the
convention, what are your priorities as president of RI?

LF: I have several other
priorities. One is to increase the representation of people from poor and
developing countries in RI's membership. Right now RI, like many other
membership organizations, depends upon the dues paying members to support the
organization. In poor and developing countries organizations of, and those for
people with disabilities for that matter, have relatively small budgets. It is
very difficult for them to prioritize dues payment in any international
organization given other responsibilities and objectives those organizations
have in their own country.

Therefore, many organizations that
should be represented in RI are not represented. It is my goal to change that,
either by altering the dues structure of RI, or by finding some means of
subsidizing the dues for these organizations, or by some other
means.

I don't have the solution at this
point but I'm committed to finding a solution to ensure that the organization
benefits from the great intellect and wonderful ideas and strengths that lie in
the people of poor and developing countries of the world. So that's kind of my
second most important priority.

Now along with that, Kathy, goes my
desire to empower people with disabilities more in the RI organization. As a
result of its history, RI is made up of many organizations for people with
disabilities. And that's not bad.

At the same time it's my personal
belief that an organization like RI can be stronger and have a more credible
voice around the world, if it has a better balance of the "of" organizations.
That is, organizations that are made up primarily of people with disabilities
and led by people with disabilities.

I think RI needs more of the "of"
organizations in order to have better, overall credibility in its work. We need
to have a better balance. We need to be a forum for conducting a dialogue
between the "of" organizations and the "for" organizations.

On the horizon I can see signs of a
new paradigm: the "of and for" organizations. I think that we talk too much in
dichotomies as if there are only two types of disability organizations÷the "of"
or the "for"÷but, I like a hybrid model.

KM: Actually, the World Blind
Union utilizes that format.

LF: Great. I think that
Rehabilitation International can be a forum to explore that concept and help
develop it.

Let me be clear. I don't want to
replace the provider organizations that are in RI or the government
organizations that are in RI, with disability organizations exclusively. What I
want to do is to complement those organizations by bringing in and empowering
organizations of people with disabilities, so that RI becomes a more credible,
valid forum for discussion of policy issues affecting people with
disabilities.

I think until more disability
organizations are included in the discussions that RI has, the validity of the
outcomes may be questioned, regardless of whether they are the same outcomes
that might have developed in a more balanced discussion.

KM: Well, you just led me to
my next question. You have a wheel, so to speak, in both camps". you're a
professor of physical medicine, and a disability advocate. How do you see being
a member of both camps benefiting the direction that you want RI to take?
Because to me that was a very significant factor in your being
elected.

LF: Well, you know, in some
respects I suppose the fact that I happen to have an academic appointment and
that I happen to have certain professional training and experience, makes me
less threatening to my non-disabled academic and scholarly peers. Perhaps less
threatening than a disability advocate who is paid to advocate for disability
rights.

Even so, I think people who know me,
including my professional colleagues who may not have disabilities, realize that
I am disabled 24 hours a day, seven days a week, and that at the root of all of
my work, at the root of my being, is a person who has experienced disability,
who understands the disability experience from a very personal perspective, and
who breaths disability rights on a second by second basis.

So while some of my professional
peers and colleagues may view me as moderate because I have certain training
that they share, and certain experiences that they share, I doubt that any of
them who know me, believe that my passion for inclusion and equal rights is
moderated by those experiences.

I will say that perhaps I do have an
appreciation for the possible advocacy that can be organized by certain
non-disability groups. I have a kind of vision for how non-disabled people can
contribute to the disability movement that some of my disabled advocate friends
may not see. And if I do, I hope I can bring that to bear.

On that point, I would not
understate it--at the root of my being is an advocate.

KM: I think that will be very
clear. But you also have respect from professional colleagues that some of us
may not have, given your training.

LF: Well, that's
conceivable.

KM:   How do you
see the development of leadership in terms of RI? For a while I have been
concerned that in the U.S. there are very few disability rights advocates, or
young people just coming into the field, focusing on international development.
How do you see RI developing as a training ground for people with
disabilities?

LF: Quite honestly, I see any
organization and every organization as a potential training opportunity and
empowerment opportunity for people with disabilities.

Generally speaking, those of us with
disabilities have not had an equal degree of opportunity to participate in
organizations, to participate in social groups. I'll say that for myself, and
I'll say that in a general kind of way for people with disabilities. I believe
that's a result of historical exclusion to some degree. It's also partly a
result of practical issues. For example, I don't have the stamina to go from
early in the morning until late at night. I don't have the physical stamina to
be involved in certain community groups in my town that other people might
choose to attend.

I simply don't have the energy. I
have to be selective about what I participate in, and there are other practical
issues. Many meetings are held in places that are not accessible to people with
disabilities or they don't provide interpreters for deaf people or appropriate
accommodations for visually impaired people and so on.

So, for a variety of reasons people
with disabilities have not in my opinion had the opportunity to develop
leadership skills in organizations that most non-disabled people have
had.

Therefore I see every organization
as an opportunity for people with disabilities to have training and to be
empowered. And I intend through the role of RI president to appoint people with
disabilities to lead committees, to lead task forces, to serve on important
commissions and in other ways to gain the opportunity be mentored by others who
have certain experiences. I think a great deal of learning can occur through the
act of participating.  People can "learn by doing" and to the extent that I
can identify people with disabilities who are willing to take part in the
organizational processes of RI, I intend to find opportunities for them to do
so. Because I think we are bound to promote ourselves by assuming and practicing
leadership.

KM: So what does the
president of RI do when he's not working either as a professor or director or a
president.

LF: Well, as you know, I do
so many things, it's hard for me to figure out sometimes whether I'm working or
. . .

KM: Or having fun . .
.

LF: I must say that I
probably err by trying to do too much. But if I err, I would prefer to err in
that direction than that of trying to do too little. And I think it's probably
difficult for anybody to have the perfect balance in life.

So I will try as hard as I can to do
those things that I choose to do as well as I can, and sometimes I fail in doing
so. Very often I have to prioritize, but ultimately I will always try to
concentrate on those things that I think will be the most likely to move the
disability movement forward. There are very few things I do, Kathy, besides my
work in advocacy and my work in my job, with the exception of my grandchild,
Trey, who's nine years old. I like to reserve time to play with Trey and his
dog, Luke, I like to go to Trey's soccer games. Spending time with Trey and my
wife, Joyce, is the one exception I make to a rigorous schedule.

But that sounds almost depressing
and I don't mean it to. Quite honestly, I would not work and I would not
advocate if I didn't enjoy doing those things. The worst thing I can possibly
imagine would be to have a job that I didn't like. In fact, I'm not even sure I
would have a job if I couldn't find one I liked.

KM: Tell me more about your
relationship with Trey.   For example, how does he handle the
disability factor, how does he explain it to his friends? Does he ride around in
your lap? Give me some personal insights.

LF: Trey likes to show off my
wheelchair. I'm almost a carnival act for some of Trey's friends.

I use a wheelchair that will raise
me up and down, and I can go from the floor level up to a level equal to a tall,
standing person. And Trey loves for me to do that in front of his friends. I
mean he can almost charge admission for them to watch me manipulate the
wheelchair.

And my wife, Joyce, who also uses a
wheelchair, spends a lot of time volunteering at Trey's school. And the kids at
the school, little kids in the kindergarten classes she reads to, refer to her
as the granny on wheels.

So, we feel like we're fairly well
acclimated and integrated into our community. People seem to regard us as an
ordinary part of the community. I think we live in a good kind of accepting
community and that includes the kids. Part of that is because we've made a
commitment to be involved in Trey's school and with his friends. We go to his
scout meetings and to his club meetings and his karate tournaments and practices
and so on.

KM: Lex, I know that you're a
fan of the Internet. What are some of your favorite websites?

LF: Well, in reality, I'm
kind of fickle"I find some websites that I like and I'll go to them for awhile,
and then find some others that I like and I'll disregard the old ones and start
going to the new ones.

I like to tinker around websites
that are productivity oriented. One I like is called http://www.hotoffice.com/
Another one is http://www.intranets.com/  A third is
http://www.ecircles.com/

I think there's a really powerful
future in web meetings that can involve people with common interests. So, I
enjoy exploring these websites that are trying to set up vehicles for group
communications. I am constantly sending them emails about whether or not I
believe they are accessible to people with disabilities--particularly visually
impaired people who I think have the greatest difficulty at the present time,
really benefiting from the promise of the Internet. I make a point of not
participating in those sites until I am convinced they are fully accessible. But
I do think that these sites that are capable of bringing people together in a
kind of synergistic communications network are the future of society, in terms
of communications.

KM:   Back to RI
for one last question.  Given your obvious commitment to the empowerment of
people with disabilities, should non-disabled people feel threatened or as if
they'll be more or less pushed aside?

LF: Absolutely not. I hope
the world that we live in is big enough to accommodate people with disabilities
and non-disabled people. I'm committed to that belief. As far as RI is
concerned, I think the role of people with disabilities must be complemented by
the role of non-disabled people.

There are lot of professionals
working in the disability field who know a whole lot more about certain issues
pertaining to disability than I do, because they've studied it, whether they're
disabled or not. They've done research. They have information that I need in
order to be independent and successful. Believe me, I don't want non-disabled
people to feel left out. In fact I want more of them to come to RI. But, I want
there to be a partnership, and I want people who don't have disabilities to
adopt the same commitment that I have to empowering people with
disabilities.

I can't imagine why anybody working
as a special educator, a teacher of disabled children, a rehabilitation doctor,
or a rehabilitation counselor, wouldn't want ultimately to empower people with
disabilities. I mean isn't that their job? Isn't that their commitment? And
given that belief, it's hard for me to imagine how real professionals would be
threatened by having people with disabilities in leadership. To me that is the
ultimate example or illustration of their achievements as
professionals.

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