CODI: Cornucopia of Disability Information

Educating Ourselves About Aging with a Disability

Educating Ourselves About Aging with a Disability

June Isaacson Kailes, M.S.W.
Disability Policy Consultant

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For those of you who know Fernando [Fernando Torres-Gil, originally scheduled
as the luncheon speaker], I want to let you know that I know I'm no Fernando.
What is really nice is that he owes me one for filling in for him. It is good
to have friends in high places. [Mr. Torres-Gil was recently appointed
Assistant Secretary of Aging, U.S. Department of Health, Education and
Welfare.]

I am glad to be here among old friends and advocates that I see in the room.
Since today is Hillary's [Hillary Rodham Clinton's] day, I thought I wouldn't
miss out on adding to the Hillary news. Do you all know that HCFA (the Health
Care Financing Administration) has changed its name to Hillary Can Finance
Anything!

So what is a woman like me (a woman with CP, cerebral palsy) doing talking to
you, filling in at a polio and stroke conference? Well, actually about ten,
12, maybe even more years ago when my peers with polio started talking to me
about their new vague ailments, I thought, what a bummer, what a drag, those
poor people! A few years later I learned that this was not just a polio
issue; that aging with a disability is a cross-disability issue. This is very
important: we can learn and we can support each other. Some of the research
related to polio and stroke has relevance across disabilities.  We have
learned a lot from polio research in relation to what is happening with the
rest of us.

We're all familiar with the saying that "forewarned is fair warned." That did
not apply to us. That is, for those of us who grew up with disability, like
everyone else we were told that when you get old, you can't do as much as you
could when you were younger. That didn't have a lot of meaning for us who
already couldn't do as much as our peers without disabilities.

This accelerated aging process, or whatever we will end up calling it in the
next decade, was a surprise to all of us.  The message I want to send today
is that when it comes to aging with disability, our old disability-related
survival skills cannot be forgotten. We have to continue to sharpen those
skills and refine them. We have to seek out peer support; you also call it
support groups. Peer support is very important, also advocacy and
assertiveness as a way of life.

We are all too familiar with the fact that we get a lot of blank stares when
we talk about aging and disability. So these are the skills that we hope will
help us when we talk to health professionals. They are skills that not only
we, but also our friends and family, need to use.

Too Many Lectures

We need these skills so that we can continue to deal with the lectures. The
first lecture I think you all know is the "You can't get there from here"
lecture. The second lecture is a little newer and it goes, "You're just
getting older; it's a natural course of events, so just grin and bear it."
Well, our concerns did and still do get minimized, ignored, and sometimes
misinterpreted.

An example of the importance of peer support for me came when I first began
to experience some aging with disability changes and began to articulate my
concerns to my doctors and health professionals. Even to me, my complaints
sounded rather vague and ambiguous. Actually they sounded a little bizarre. I
was saying things like, "I'm not walking as fast as I used to; my balance is
not as good as it used to be; I have more spasticity, more aches and more
pains." And believe me, I did get quite a few blank stares. And many "getting
older" lectures.

So I decided to take things into my own hands and check things out. I decided
to conduct my own very scientific, I'm sure statistically significant,
research. I talked to my peers and my results confirmed that something was
going on, that there was something happening with a lot of us. My medical
diagnosis was that I was spending too much time in smoke-filled airplanes;
after the smoking ban, that I was spending too much time in airplanes
breathing uncirculated or recirculated dirty air. And just in case that
diagnosis was not adequate, then my other diagnosis should work: because of
poor sleeping positions, the blood was draining from my brain and I was
losing brain cells at an accelerated pace.

I realized again that I should pursue some other advice and I did. Ken [Dr.
Kenneth Brummel-Smith] helped me and gave me some good advice. But, I'll tell
you, seeking out that advice was not easy.  It was a struggle to find anyone
who would even listen and not give the "You're getting older" lecture.

So, advocacy. In order to have an impact on how the Administration will
address issues on disability, we can't take off our advocacy hats. While you
researchers determine the nature and scope of this aging thing and develop a
base of knowledge and some intervention strategies, and engage in your
painstakingly slow, detailed, longitudinal research and other studies
confirming or unconfirming the already voluminous anecdotal information that
is already out there, we need help now! Our sense of urgency is now! Our
clock is ticking now! We need to push for information and intervention now!
  
We Need a Vision

But first, as many good advocates do, we need a vision. We need a vision of
what we are going after. Well, here is a start.  We need our very own
extensive and complete body user's guide that offers accurate current
information about prevention, about overuse, about exercise misuse, underuse,
diet, nutrition and assisted technologies and finances. We need health care
professionals who are well informed about these aging issues, who have access
to an extensive current data base of information and intervention strategies;
people who know us as individuals, who know our history, and who do a yearly
thorough assessment and evaluation, not to us, but with us, to determine if
things have changed, and if so to make some knowledgeable recommendations
regarding what might help us to improve or maintain our functional abilities.

This is only a piece of the vision and I know there is more.  But we need a
vision of what can happen within our lifetime.  So what must we do now?  We
must make our needs clearly, assertively, and repeatedly known in terms of
service, research, and education, including prevention. Yet, it's just good
old advocacy. Margaret Campbell was saying earlier this morning that this has
become a hot topic. Well, I'll tell you, she says it's become a hot topic
because of the number of people who are included in our group, also because
of the financial issues nationwide. It's also become a hot issue because a
handful of us have been advocating in Washington about this for a long time.
I remember sitting at a table with Fred [Maynard] about two years ago,
pounding on the table about these issues. We would get animated when the
director of NIDRR [the National Institute of Disability Rehabilitation and
Research] would walk in; then we would repeat it twice.
  
So what about today, what do we need to push for? We need more conferences
like this one. We need more platforms and mediums like this where we can
interact one-to-one with researchers and with health care providers. We need
to have people make use of the already existing anecdotal information. How
can we benefit now, across disability groups? There is an awesome amount of
anecdotal information out there. So why not make some assumptions and some
suppositions and try some new and different kinds of directions? We need to
be informed of what is already known, even if it is anecdotal, even if it is
inconclusive, and even if it is contradictory.

We are our own case managers; in language more preferable to us, we are our
own service coordinators. We need the information to effectively manage our
own health care and be able to increase or at least maintain our
independence. We know there is an information explosion out there in health
care, and we know that no one can keep up. No professional can keep up with
the voluminous amount of literature. So we play a role in terms of motivating
our health care providers to read the information. We frequently take on the
educator's role with our health professionals; or at the very least, we act
as catalysts to motivate them to seek out and review the research and the
information.

And We Need Information -- NOW!

Our need is urgent. We need the information now about mitigation of risk
factors, about prevention of secondary disabilities and assisted technology.
Cannot overuse be predicted? Can't the effects be prevented or at least
minimized? You know, when I see a kid or teenager walking laboriously with
crutches, I sure think about all these things. I think: Are there things we
know that we should be sharing with these people now? Is walking so supremely
valued that the long-term effects are better ignored until they can be
ignored no longer? What about conditioning and flexibility and endurance?
Don't we know enough to get the information out there now? Don't we know that
because we work harder, physically harder, day to day than most people,
conditioning and endurance and flexibility become supremely important now?
Can't we apply that information now?

Endurance is another issue. What do we do to maximize our endurance? What
about the tremendous knowledge base coming out of sports medicine? Some have
made the analogy that we use our bodies much more like athletes do than the
typical population, so can't we benefit in some way from their sports data
base of information about all the things we're concerned about -- exercise,
diet, medication, and energy conservation? We need this information now, we
need it in clear, understandable, jargon-free language, and we need it in our
information sources. We need to be reading it in Disability Rag, in
Mainstream, in all our newsletters, in Dianne Piastro's column. We need to be
reading it in the things that we are reading. We need close access to it.

We also need to insist that disability-related organizations, as well as the
government, allocate money for more research.  There are tons of
disability-specific groups out there. They need to be allocating money for
this, too. We cute kids did grow up but we ain't going away.

We need to demand that our community-based long-term care services embrace
our values of self-determination and empowerment and assist us in continuing
to work and live in the community. These services are frequently viewed as
seniors' issues. These issues are really our issues, too; because, if our
functional capacities change, we still want to be able to work and we want to
remain in the community. We will need to take advantage of those services, so
we want them to be adapted to be more in tune with our values related to
self-empowerment and self-determination.

So, I want to leave you with a message. Whatever Fernando was going to say
about the predictions from the Potomac, let's ensure that those predictions
get influenced by our advocacy, so that the priorities and the directions of
the Potomac reflect our vision and our preferred future and our needs today.
We need more Fernandos in Washington.  So I hope you all send in your
resumes to Hillary and Bill.

Thank you.