Dear Giles:
Your (well-written!) account of how the sales-clerk ignored you,
apparently simply because you appeared (to her) to be debilitated,
I'm sure must strike a chord with many millions of people -- people who
APPEAR, in the eyes of others, to be debilitated in one form or another,
and who therefore receive similarly egregious treatment.
That such treatment happens is reprehensible, wrong, and, I believe, is
also destructive to both parties to this form of "communication". The
"ignorer", by thus rejecting the "ignored", loses, a valuable opportunity to
grow in character and in spirit (as well as in breadth of understanding);
and the "ignored", unless sufficiently strong of character and spirit to
ward off the rebuff, can too easily suffer the pain of rejection, the
humiliation of being thus rejected, the anguish of beginning to (wrongly!)
accept the worldview of the "ignorer", and so on.
I'm a relatively young, healthy person. Yet all my life, and even through
the eyes of my mother in her recent later years, I've seen -- and rebelled
against -- what seems to be a common American-cultural view that those who
are "debilitated" (including "elderly", among other things) are to be
considered as being of significantly lower status than "the rest of us"
and therefore deserving of less care, less attention, less credence, less
notice, than "the rest of us".
How stupid, how unjust, how demeaning, how counterproductive is that form
of condescension!
And, in my view, how powerful a *trigger* that form of condescension
should also be, toward making us all actively *rebel* against the
ignorance that allows such condescension to flourish!
How to do it? I'm not totally sure, beyond us all acting forcefully on an
individual, personal level. For example, in the personal experience that
you wrote about: Perhaps next time you go to that store, your wife should
politely but firmly tell the clerk (and perhaps the manager as well) that
when you come into that store, you are not to be ignored or treated with
(alleged) fear, but that instead you are to be teated with COURTESY AND
RESPECT AND HUMAN DECENCY, and that you are to be *listened to* when you
speak rather than be ignored. You too can make that point forcefully and
directly to the clerk and the manager, if you choose. And so, I would
suggest, should we all, in similar circumstances, as far as we are
capable.
In a broader sense, what this is all about, I think, is the issue of
*empowerment*. This PD Listserv certainly is a big step toward enhancing
our empowerment. So are the proactive suggestions and plans posted here by
many of this Listserv's members. The push for the Udall Bill, and for
Congress to now require that the $100-million of that bill actually be
spent on PD research, is another major step ahead in empowerment -- and in
making the public, and our legislators, aware that although people with PD
may indeed have a serious illness, people with PD are *also* vibrant,
intelligent, capable human beings -- just like "the rest of us" -- and are
to be treated with respect -- just like "the rest of us" -- too.
The more that we (whether PWP's or not), who believe that physically
debilitated persons deserve to be treated with consideration and respect,
speak out about why this belief is justified and productive for all, the
better can be the rate of broadening the sharing of that belief across
our culture and society.
But how else to do that?
What about, for example, contacting the Parent-Teacher Associations or the
principals of local elementary & high schools, to propose, perhaps, the
following:
(a) special educational/social events
in which children and physically debilitated persons can get together, in
some type of a structured format, to share their questions & answers and
so that it can become clear that although a person (of whatever age) may
be physically debilitated, he or she is still a person with lots of other
capabilities and is still to be respected in any case;
(b) special courses -- or elements to be included within a regular course --
about the positive things that have been brought into the world by people,
throughout history & our contemporary times, who were/are physically
debilitated, whether those persons were "great men/women of science" (for
example) or even just wonderful (physically debilitated) people in our own
(or the students' own) families;
What about, as a long-shot, contacting the major advertising-agencies,
those of them that produce the numerous "public services announcements"
(PSA's) that air on radio & TV, and proposing to them that they produce
PSA's that will (a) promote, as above, a better understanding of &
respect for the physically debilitated, and (how could I not add this
one?:) (b) promote support for PD research *and* the fact that PWP's are
mentally/spiritually vibrant people deserving respect "just like the rest
of us", thus deserving of that support?
Also, what about writing to local museums, art galleries, and other such
venues, and proposing to them that they organize events there that would
show off the positive creations of, and contributions to our culture by,
the physically debilitated? I suppose that this idea may sound grim to
these organizations *unless* it is phrased & structured in a clearly
positive light -- which it ought to be. I suspect that a *huge*
contribution to the more positive side of our western civilization has
been made by persons who, in one degree or another, were physically
debilitated -- but that the public (including us), by and large, is
completely unaware of who those persons were or what their physical
limitations were.
How long ago was it, for instance, that even the idea of wearing
eyeglasses -- to counter a physical debility (=poor vision) -- was
considered gauche? How many people, who had or have cancer, for example,
have brought wonderful and widely recognized advances to our world? And
persons with artificial limbs -- haven't many of them too contributed
greatly to how we live today? I also think of Dr. Stephen Kawking: He is
considered to be perhaps the planet's most brilliant astrophysicist,
the Einstein of our contemporary times; and yet there he sits in
his electrically powered wheelchair, almost unable to move a muscle or to
make an intelligible sound due to his terribly debilitating nerve-disease
-- and yet, he is still consistently in the vanguard of how science looks
at the place of Earth, and its future, in the Universe.
Examples, I'm sure, abound. But I suppose it's up to us to find them and
then to try to get our localities, our schools, our legislators, our
society as a whole, to recognize and accept that the human being,
regardless of age or physical debilitation, indeed has worth and merits
the respect and consideration that we all (I would hope) wish for
ourselves.
Perhaps this could be the start, in this PD Listserv, of a continuing
dialogue on this issue.
Lastly, if I may add a thought, slightly on the humorous side but also
with a point to it: As I often told my wonderful Mom, especially when she
was going through hardships in the hospital:
"Non illegitimus carborundum est!"
-- I.e., Don't let the b*stards wear you down!
-- SJS
6/3/98
