Lives V
=======

.. George Hohmann
.. Jon and Sharon Wilkin
.. Beverly Nameche
.. Bob Ludlow
.. Robert Heist
.. John Galland

George Hohmann
--------------

We’re in Tucson, sitting in a pleasant backyard
patio chatting with George Hohmann. This man is
pretty special, and I’m curious enough to start off with
a direct question: George, you’ve been in that chair for
35 years. Has it been good or has it been bad?

“It’s been good.” And to George Hohmann, life
surely has been good. You can see it in his face, which
looks much younger than his 55 years, and you can see
it in his satisfaction with home, marriage, children and
career.

His career is mainly what the world sees, although
he seems to have several careers. He’s just finished 30
years with the Veteran’s Administration, most recently
as chief psychologist for the Tucson VA Hospital. He’s
now planning to intensify his involvement with the
University of Arizona, although he already holds a full
professorship. He teaches courses in abnormal
psychology and psychopathology, heads a
psychodiagnostic testing assessment seminar, sits on a
number of doctoral committees, directs dissertations
and supervises clinical work. He crosses the country
about once a month giving lectures and participating in
seminars and symposiums. He has written papers on
many aspects of disability, and, although he vehemently
rejects the appellation, has been described by several of
his prominent peers as the Father of Rehabilitation
Psychology. He is, he’ll admit, a workaholic.

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In 1944, when he was 20, George had survived the
dust bowl days of the Texas Panhandle and was hoping
to survive World War II. He took a bullet in his spine,
had a T9,10 lesion and lousy expectations. “In 1944,
there were no wheelchairs on a SCI ward with 60
people on it. The army would not invest in these
wheelchairs because we were all gonna be *dead*.” So
George was once again faced with a survival situation
and took matters into his own hands.

He started school at UCLA in 1946, which was, at
the time, a pretty outrageous thing to do. “People who
were disabled, crippled if you will, stayed at home or in
institutions, hospitals, nursing homes —they didn’t mess
around out in public.”

George messed around a lot. He married in 1948,
even though prevailing wisdom strongly suggested that
wheelchairs and marriage don’t mix. The marriage is
still strong. About the same time George collected his
PhD, he and his wife adopted the first of two children,
both now in their twenties and in graduate school.

[It’s interesting to note that in those days, the
Hohmann’s were told that a disabled man was an
unsuitable parent. It took years to beat down the
resistance of the Children’s Home Society. In contrast,
check the ease with which the Ludlows, a quad and his
wife, adopted their children (see :ref:`Bob Ludlow`). Times have
changed, partly because of people like George.]

Does he recommend adoption? “The adoption
experience itself was very very rewarding. I
don’t see how people could love a kid any more if
they had borne them. I don’t know how there could
be any more relationship with the kids than we
have had.”

With wife, kids, doctorate and a job with the VA,
George started messing around in the field of
rehabilitation and took a strong interest in the
psychosexual problems of returning veterans: “I think
of people who are into human sexuality as kind of
kinky people in general, and I think of myself as one of
the straightest people I’ve ever known. But one of the
problems was that the patients were saying over and
over and over again, for God’s sake won’t somebody
tell me what my sex life’s going to be like, and nobody
would. There was nothing, prior to 1970, that dealt with
What do people do, who have cord injuries, to make
love? And how do you go about making love, no matter
what your neurological condition is, or how do you
incorporate whatever residual genital-sexual functioning
one might have into a lovemaking pattern?”

George broke the professional ice by presenting a
paper that addressed these problems, a paper which has
been published and reprinted and become a certified
classic. So that’s how George Hohmann, self-proclaimed
straight, got into the sex business.

He dislikes “the assumption that the only kind of
sexual activity that is desirable, that is effective, that is
satisfying in the final analysis, is penis and vagina in a
missionary position. I’m not putting down genital
activity — it’s neat, it’s physiological, it’s biological — but
I’m saying that sex is a many splendored thing and
there are lots of ways of showing love and affection. To
put that much emphasis on the genitals, it seems to me,
is to bastardize the beauty, the closeness, that come
from a mature relationship between two people.”

Of the newly cord-injured person: “They don’t
understand that somewhere down the line, rehabilitation
probably *ain’t* learning to do well what the doctor tells
you; it is learning to do well that which you want to do.
Maybe doing what the doctor tells you works and
maybe doing the opposite works and you may have to
tell him to go to hell. He is telling you how to be a
patient, and if you follow all of his instructions, that’s
what you'll end up being. If you don’t follow all his
instructions, you may end up being a human being.”

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I submit that it is a measure of the respect and
reputation he enjoys among his peers that, after 30
years of close professional association with doctors, he
has not been most foully murdered in his sleep for his
irreverent attitudes. Here’s some more:

“Life with a disability doesn’t have to be *any* way,
except the way that you make it. Sure, there are reality
things that one can’t do, but if you can’t do it that way,
there’s another way you can approximate doing most
anything you want to. If you keep trying, if you are
active, if you keep yourself exposed to other people, if
you seek stimulation of one sort or the other, you’re
gonna get rewarded for it.”

About his own life: “The most unusual thing about
my life is that it’s been so usual. We’re the average
middle class family. I’ve had a good career, I’ve had a
good wife, I’ve raised, together with my wife, a couple
of kids that are fine youngsters, had the nice things of
life and I’ve lived! It’s not everything, but it’s damn sure
something.”

Parting shot: “SCI, like life, is an absurd kind of
situation. And the only thing to do with absurdity —
there are only two options— one is to laugh and one is
to weep.”

The latter of which is patently absurd.

Jonathan and Sharon Wilkin
--------------------------

They’ve been married for 14 years. They’re both
victims of murderous acute-phase care, both C5,6
quads, both completely independent, both graduates of
the University of Illinois and both successfully and
significantly employed. And they’re as unalike as any
two people could be. Jon: taciturn, expresses himself
with shy/dry humor and precision. Sharon: lushly
assertive and verbal. Their marriage, their lives and
their home in Vienna, Virginia are all the results of a
lot of caring and a lot of work.

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1958. Sharon was 17, an exchange student newly
arrived in Belgium, when she broke her neck on a ride
at an amusement park. Perhaps from a need to quickly
remove their casualties from the public eye, the park
officials refused to let her wait for an ambulance and
sent her off to a doctor sitting upright in a car, her
head bobbing on her chest.

1960. Jon, riding a motor scooter, collided with a
car making an illegal U-turn. He broke his neck and his
arm, but had no paralysis. He was given emergency
treatment at a small hospital in upstate New York
where his arm was set but no X-rays were taken of his
neck. After a night of tossing and turning, he was
paralyzed.

Sharon stayed in a Brussels hospital for six weeks,
then flew directly to a New York state rehabilitation
center. She spent nine months there. “I learned to brush
my teeth and wash my face and when I was discharged,

I was told— or my parents were told—that *she* would
need 24-hour a day attendant care for the rest of her
life.” Sharon was unimpressed.

Jon, after acute care, went to a different
rehabilitation hospital in the same state, where he was
similarly unimpressed. “I could do the same kinds of
things, like brush my teeth.” And smile a lot? “No, you
couldn’t do that. I was supposed to brush my teeth all
the time!”

Separately, both Jon and Sharon had heard that
the University of Illinois at Champaign was the only
university in the country then accessible to students in
wheelchairs. It was accessible because of the fiery
determination of one man, Professor Timothy J.
Nugent. In those days, Tim interviewed all potential
scholars before acceptance.

Sharon: “He’s my great, great savior. He is the
person to whom I attribute my entire life. And the
interview with him was: Can you dress yourself? No.
Well, why can’t you?”

When Sharon arrived in Champaign for her first
semester of school, she was put through a make-or-break
functional training week. In that week, she
became almost totally independent. In one week, she
overcame the inertia of a year of being told she couldn’t
do things.

Jon: “Tim Nugent and I got into a real shouting
match. Yes you can! No I can’t! Yes you can! Except it
took me three years instead of a week to learn to do
things.” (Jon has less sensation and motor function than
Sharon, and spasm which he learned to deal with only
after a temporary alcohol block.)

By 1965, when Sharon had her M.Ed. in
counseling and Jon was finishing his master’s in
mathematics, they got married and moved into a
modified trailer home.

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Sharon: “It made me very angry for people to ask
before we were married, Well how are you going to cut
things, how are you going to handle hot things, how are
you going to do this? And at that time, neither of us
drove and neither of us thought we would ever be able
to drive, because of our spasms. (Sharon now drives a
van, and Jon, a much-loved convertible.) Now, as I
look back on it, it almost horrifies me to think of what
Jon and I went ahead and did without having any
answers.”

Jon: “But a lot of the time, people don’t try things
because they don’t know how they’re going to do them,
and they’re afraid to experiment with different things.”

Do traditional gender roles get changed? What I’ve
seen so far is that both of you make money and both of
you make coffee.

Jon: “It’s a lot more traditional then she’d like it.”

Sharon: “Yeah! (Jon chortles softly) Now this is a
serious problem. Jon was raised in a family where the
mother does all of the women’s work and the father
doesn’t touch it. And Jon was raised to see certain
things as women’s work and certain things as men’s
work. Because of Jon’s disability, and the threat to his
masculinity, I did really back off pushing that he do
more of the laundry, cooking, cleaning things around
the house.”

Sharon admits she’s a willing martyr, and points
out that it was Jon who had gotten up at 5:15 this
morning, this Fourth of July holiday, to wait in line for
gasoline.

Once armed with a degree, Jon spent five months
searching for a job. Northern Virginia Community
College finally gave him a conditional contract for one
summer of teaching, and has renewed it for 11 years
since. He teaches both mathematics and physics. They
think his difficulty in finding a job was outright
discrimination and feel sure it wouldn’t happen again
now.

Sharon: “He would be sought after by industry
now. They would love to have him.”

Did you ever consider switching?

Jon: “Nope. I love my job. I really do.”

After moving to the Washington, DC, area, Sharon
worked as a rehabilitation counselor for eight years. In
1976, when the Department of Labor was staffing for
the upcoming Section 503 contract compliance
enforcement, she applied and was accepted. She is now
an employment opportunity specialist working in the
area of policy and guidance in Affirmative Action for
the disabled, for women and minorities and for Vietnam
era veterans. She was named one of ten Outstanding
Handicapped Federal Employees of the Year in 1978,
and one of 13 representatives of the federal work force
selected to meet with President Carter.

Do you think 503 is actually working?

Sharon: “Yeah, I think it really is. And I think the
kinds of experience both Jon and I had in our initial
search for jobs just simply would not occur now. First
of all, people would be scared to not hire you without
good reason, and I think they’ve had some pretty big
attitude changes themselves.”

Is there reverse discrimination? Do us gimps have
certain advantages?

Sharon: “Hmm. (Laughs, pauses) Yes. Definitely.”

How about depression?

Jon: “I was probably pretty bitter. Still am, in a lot
of ways.”

Sharon: “I just knew that it was like novocaine; it
was going to wear off. See, I knew it wasn’t permanent,
so I didn’t have anything to get all upset about.”

Jon: “You live with it. There it is, and you gotta
beat it. If you want to do anything, you gotta beat it.
But you don’t have to like it.”

And after 14 years of marriage, how’s it been?

Jon: “There’s been ups and there’s been downs.”

Sharon: “We’ve had sort of the normal kind of
marriage with a crisis a couple of years ago when Jon
and I separated for 16 months. What was unusual
about it is the fact that we did get back together.”

Did the wheelchairs put additional stress on the
marriage?

Sharon: “When it gets to the issue of marriage, the
disabilities aren’t what’s important. It’s the people. It’s
who and what you are.”

Jon: “A lot of it is just working around whatever
situations come up. And the disability’s just one of the
situations. There’s a lot of other ones. It certainly
wasn’t the disability that caused the separation or
getting back together.”

Sharon: “The emotional trauma and the pain of the
marriage breakup and the separation was far, far, far
worse than breaking my neck and anything that I’ve
had to live through with this disability.”

I think that puts things in perspective.

So does this: Both Jon and Sharon were very
active in the National Paraplegia Foundation, and now
the National Spinal Cord Injury Foundation, of which
Sharon is a director. Do you feel a need to put
something back into the network of disabled people?

Sharon: “No longer do I really feel that there’s as
great a need to plug something back into it. But don’t
forget that we were around when there wasn’t the
legislation that we have now—I mean, *somebody* had
to be getting some things done.”

Beverly Nameche
---------------

Another car wreck, this time on a rainswept road
to Boston: “I was waiting to see if my kids were alive,
then I was going to decide whether I was going to live
or die. And when I could hear, or was told, that they
all were alive, then that was a very decisive point for
me. Because I wouldn’t really have bothered. I think
there’s quite a free choice there. To my right was a
bright yellow light, really easy, really comfortable, and I
could have just shifted over easily. Except on my left, I
could hear my four year old crying. Now whether or
not she was is questionable. But then I felt the
tremendous need to pull to my left and to do the harder
job.”

So it was that Beverly Nameche opted to raise her
kids as a C6,7 quad. She doesn’t interpret the above
events in a particularly metaphysical way, but more as a
psychological state resulting from physical trauma. That
was 1967.

Beverly was unlucky enough to begin her rehab at
a general hospital in Massachusetts, and lucky enough
to finish it at Stoke Mandeville in England. About the
former she has very little to say, on the principle that if
you don’t have something nice to say, etc.; on the
latter she heaps praises.

“I spent eight weeks there as an outpatient and
learned in eight weeks what I didn’t learn in about
seven months in Massachusetts.” What she learned was
to become completely independent. “It was excellent;
very hard push. You'd arrive at 7:30 in the morning
and have a tea break for a terrible tongue and semolina
pudding or something, and if you could stomach it, you
went on to the rest of the day. And left there at 5:30,
green in the face because you’re so tired. They do not
relent.

“I think rehab here in the States is really cream
puff, at least the stuff I’ve seen. It’s about a two hour a
day thing. Isn’t that ridiculous?”

It is ridiculous, and if that’s what you have now,
you should know it. It is what most general hospitals
offer. It is also worth noting that most American
centers which are specifically in the business of treating
SCI use Stoke Mandeville as a model for enlightened
care. Most of them are hard push too.

Beverly continued her rehab by spending a year in
Switzerland. “I thought that if I could go to another
country and live and learn to drive a hand controlled
car and bring up kids and deal with another language —
all these unknowns—then I figured I could come back
here and do anything I wanted to do.” What she
wanted to do was to end her marriage, raise her
children and move back into her old house in
Gloucester, all of which she did.

The marriage had been rocky since before the
accident, so there were no real surprises in its
dissolution. She raised the ante on children by merging
her mother-and-three-kids nucleus with a father-and-two-kids
proton. Bringing them all up seemed like a
pretty difficult undertaking, but nobody told her she
couldn’t, or she didn’t listen if anybody did, so she went
ahead and raised them. She encountered the most
resistance over the house. Occupational therapists who
looked at the house told her there was no way she
could or should live in it, and she was so angered by
their lack of imagination that she moved right in.

To be truthful, it doesn’t look like wheelchair
paradise. It’s located about a block inland and upward
from the sea. It’s an old rambling structure of two or
three stories, depending on which side you view it from,
and clings to and around boulders and outcrops of
bedrock. It’s the sort of house some people worry about
falling out of.

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Improvements were made. An elevator was
installed, not an Otis with a telephone, but a cheap
industrial lift which works well. The driveway was
paved up to the elevator door. A bathroom was added
to the first floor, and a dining room and porch were
converted to an open kitchen, living and dining area.
The kitchen has counters at wheelchair height, a stove
set directly into a butcher block, three or four knee
holes for food preparation and dishwashing, a
dishwasher, a side opening microwave oven and a grand
view of Gloucester Harbor. She built a small sundeck,
added vegetable and flower boxes, and gardens the
steepest plot east of West Virginia. It’s an extraordinary
house in an extraordinary place.

Lest it be thought that Beverly’s home is a
monument to money, it’s not. Completing it was an
eight year project attributable more to tenacity than to
dollars. It’s a well loved house, and it’s seen five
children grow up. And it’s seen some lean times.

“I’ve done some things for salvation, in order
to keep the kids fed. I worked as a coordinator for
three years on the Meals on Wheels program, which I
started down here in Gloucester for elderly people, and
I included handicapped people. That was just survival. I
did it from the house and drove meals and got my kids
to run them into houses and coordinated volunteers and
ran the whole show.”

Much of her work has been closer to her interests.
She was involved in a study on personal care attendants
done by Brandeis University, then spent two years
running the peer counseling for Tufts Rehab Center’s
Independent Living Training Program. She’s just
finished a four year term as a board member of the
Boston Center for Independent Living and chairs one of
the National Spinal Cord Injury Foundation’s regional
satellite programs.

“I left the Tufts job because my Medicaid was
taken away. I’d given up my SSI because I was making
a huge $85 a week. Then the Medicaid went, and I just
couldn’t afford to do that.” Sound familiar?

So now she’s moving toward sexual therapy. “I
said Dammit, what’s one of the big questions anybody
deals with after you say Can I walk? or maybe before
you say Can I walk? Why don’t I pursue that if Mass
Rehab will be so kind as to fund it?” Beverly’s very
open to new ideas, her own and those of others. “I take
it one step at a time. What I do next year isn’t what I’m
going to do the year after.”

Beverly feels that new injuries are likely to receive
rather unimaginative advice about their options in
lifestyle and career choice. I asked her if she once felt
that the expectations of others were being forced upon
her.

“No, I didn’t. But I think that was partly because I
was already married, was 33 years old and had kids.
That’s different from what happens to the young person
who is immediately hit with—Oh You Must Go to
School— because there is no other avenue that anyone
is terribly creative about. But it takes time before a
person knows. I think it takes some maturing, some
aging with a disability, before you get to the point of,
Well this is what *I’m* going to do because this is what
meets my needs. What’s different between that and an
able bodied kid who’s going off to college and decides
he wants to take a year off?”

Hot tip department: “I think it’s very important
that people fill their lives as much as possible. I think
sometimes right after injury, and right after leaving the
hospital, you have to work at that. You have to think
of things to do, you have to push yourself to get into
things, to *get out*. I think I’m gregarious, but I have to
push myself at times to get out and change my situation
so that I meet new people and that I care about those
people and they care about me. It makes my life fuller.
But more important than that is that you have
somebody to love and somebody who loves you.”

Through hard times and good times, the years seem
to have brought a lot of compassion into Beverly’s life.
How many years? She counts them mentally: “Why, it’s
been 12 years! Time flies when you’re havin’ fun,
doesn’t it?”

Bob Ludlow
----------

Santa Cruz is a pleasant coastal village trying hard
to outdo Carmel in the charm and quaintness
departments. Bob’s office is in an old, re-done section
of the town, not pretentious, but carefully planned
funk. The sign says Ludlow, Thompson, Fitzwater and
Bolles, Attorneys at Law. Bob himself is friendly and
athletic looking, nattily dressed in blue blazer, polka
dot tie and button-down shirt. One of his colleagues
looked in to ask why he’s so duded up today — it’s for
his upcoming lunch appointment.

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He drives a Mercedes, although he admits that
compared to his old Chevy II, it’s a poor wheelchair
car. Bucket seats. He has a home in the hills above
town; very rural. Horse country. His wife, Sherrel, likes
dressage. Their two kids like everything. It’s the
American Dream. The good life.

Bob was 13 when he broke his neck on a water
slide. C5,6. 1952. Since Santa Cruz had no
rehabilitation facilities— had probably never seen a
surviving quad before— Bob stayed home with his
parents for two years, then shuttled between a general
hospital and a rehab center in San Francisco for
another year.

“The state of the art then was not anything like
what it is now. They approach it a lot differently now.
They lower the expectation level at the very beginning.
They say, You have a devastating injury, you’re going
to continue to be this way, you better get started doing
*something*. In the old days, they’d say, Wait and see
what'll happen. They’d foster that feeling, then you’d
have that extreme depression when you found out
nothing was going to happen.

“Around 16 or so, I came back home after the
rehab. My dad came in and said, Hey, a bunch of the
kids are up at the pool and they want you to come out.
I said, I’m not going to. I threw a temper tantrum,
God, I cried, and he forced me to go up there and put
me in the center of it. And my choice at that point was,
continue to act like a punk or get into it. So I did it,
and everyone said, Why don’t you do this, Why don’t
you do that? And it became such a hassle refusing that
I fell into it, I started flowing with it. And you know
yourself, you don’t have any problem dating or
anything else, because if you can adjust to it the other
people around you can adjust to it.” He grins impishly.
“That’s the way I handle it now, that I adjusted a long
time ago and now I just have to wait for those people
around me to.”

The rest of it seems relatively simple. “I got off
(on?) my ass when I was 16 or 17, went to junior
college for two years, went to Stanford (on a
scholarship) and then I went to Hastings Law School so
I'd have three more years to make up my mind what I
wanted to do. I decided to become a lawyer, probably,
after I'd gone to law school. I graduated in 1964, was
with a law firm here in Santa Cruz for a year and a half
and then I went on my own.”

He’s been on his own, as an attorney, for 16 years.
He and Sherrel were married 15 years ago and have
adopted two children. Justine, now 10, is named from
Lawrence Durrell’s *Alexandria Quartet*. Tom, 12, more
commonly known as Tigger, is from *Winnie the Pooh*,
a classic of equal stature. The Saint Bernard is Gudrun,
from *Women in Love*, and another less visible dog is
Pooh Bear, another tribute to Milne.

Back in the office, I thought of :ref:`George Hohmann` and his epic
struggle to adopt kids, and 
asked Bob if they had any trouble with adoption
proceedings. None. He couldn’t believe that anyone ever
had. He admits that his attorney’s manipulative skills,
“people management” being the euphemism preferred
by the trade, may have helped with the adoption board.
“Basically, life is just dealing with people anyway.”

Bob specializes in criminal cases, personal injury,
business and labor arbitration. Is the chair a restraint?
Nope. He doesn’t believe the old saw that a disabled
attorney prejudices his client’s case. The court rooms
are accessible, and in Santa Cruz, even the jury box and
bench have been made accessible.

He does, however, have a complaint. There were
two young quads who once came to him for advice.
They were both bright, so he urged them both to go
into law. They did. Trouble is, they both hung up
shingles in Santa Cruz. “Both of them came and
practiced in my town. It’s no longer a unique experience
for anyone in a wheelchair to be a lawyer.” His rueful
expression is not for real— Bob is a ham.

He has built a credo, mainly derived from Dante’s
*Divine Comedy*: “The worst place to be is limbo. Not
purgatory or paradise, but the place where you don’t
make choices. It’s extremely important that people not
put themselves in limbo, because choices don’t hurt.
There is no such thing as a mistake or a failure when
you make a choice. You learn each time you
affirmatively make a decision. I guess that’s the first
thing you have to learn—that you have to make
choices.”

And later on? “You have to re-establish your
independence at some point in your life, because you
get to the point—I don’t know about paras, but for
quads — that it’s so easy to have someone else do it.
Timewise. So you slip into that. Now I’m trying to get
back away from that. I’m getting into doing more
things myself again.

“Part of what I’m doing now is, I’ve decided to go
out and live on my own for a number of months just to
see if I can do it. It’s sort of hard to explain to my
wife —it’s nothing personal—but that’s what I’m doing.
And one thing I’ve found is, it’s not that difficult.”

Finding an attendant was a momentary concern.
“You use someone for half an hour in the morning and
half an hour at night. I think that subconsciously, going
out and placing such reliance on someone was
something that bothered me a great deal. But that
anxiety you suffer in making that choice doesn’t really
exist because once you do it you find out it doesn’t
mean that much. The anxiety’s all over with. All you do
is ask someone. The fears you have are not genuine.
What’s really strange is that it takes only a couple of
hours for someone in my situation to make changes
occur that’ll make their whole life different.”

Now we’re back at home with the kids and dogs.
Bob’s here too, running things while Sherrel’s on a trip
to Mexico. Do the kids help with the work? “Yeah. I
made a deal with them where we’re supposed to share it
equally, so it isn’t a matter of just ordering them to do
it at all. The kids’ idea of equal is different from mine.”
Justine displays a chart outlining everyone’s chores: kids
bring up wood, unload the dishwasher and clear the
table. Dad gets to cook and wash dishes.

It’s not all one-sided. “The things I need done, the
kids are really helpful about. Like in the evenings, when
no one’s around, the kids’ll throw me into bed and
make it a project. You sort of like that don’t you?”

Justine, in a fit of giggles: “I know. It’s fun.
Singing around, it’s real funny. I like it. I like taking
showers with you.” Justine is half kitten, half ham like
Bob. She clings to him as he brushes her hair. “When I
get dressed in the morning, it’s completely open. I don’t
understand why people have this ethic —even if they’re
not in wheelchairs —about getting dressed and taking
showers and all that stuff, because these are all part of
life with us.”

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The place becomes a soundman’s nightmare.
Justine is clunking around the wood deck on
rollerskates and Tom is dribbling his basketball while
doing one-handed wheelies in Bob’s spare chair. What’s
Tom think about his dad being in a chair? “He’s still
the same.” What’s the basketball team your dad’s going
to coach? “The Santa Cruz Roller Coasters. I’m gonna
probably be assistant coach.” Are you good enough for
that? “Yeah, I know a lot. I can show you, shootin’
from a wheelchair.” He did. He also said he’d show me
how he could go up two stairs in a wheelchair. I didn’t
believe it until I saw it, when the method became clear.
The two steps were separated by 30 feet of sidewalk.

Bob compares a SCI winner to Pangloss, in
Voltaire’s *Candide*: “You're foolish enough to think that
it’s the best of all possible worlds, when it isn’t. It takes
that kind of resiliency, a lack of cynicism, to the point
where you can like people, you can like events, even if
an objective viewpoint might say that the person
shouldn’t like that situation. You know, it’s no fun
being in a wheelchair, but it’s like the guy who goes in
the service and he’s stationed in Paris, and he hates
the service so bad he doesn’t like Paris.”

Final admonition: “Take a chance. Because they
really aren’t chances. It’s a chance for success. There’s
no chance for losing by taking a chance. There’s no way
you can lose. If I were to talk to anyone who was
thinking of a career, something to do, I'd say Do it.
Just do it.”

Robert Heist
------------

This is not Rob’s first (or second or third)
appearance in print. He’s the world’s easiest interview,
and people capitalize on that. Young, articulate, likable,
well placed in the business world and highly visible in
his community, he’d be called an overachiever without
his injury. As it happens, he’s a C5,6 quadriplegic. Rob
so impressed Dr. Howard Rusk that his story serves as
a forward to Rusk’s autobiography, *A World to Care
For*.

It was a water skiing accident in the summer of
1966, just after he’d gotten his business degree from
Tufts University. He was 21, and had an appointment
to report to Officer’s Candidate School and thence to
Vietnam. He broke his neck and his plans changed.

Rehab started at the Boston University Medical
Center, four and a half months of it, followed by the
same length of time at the New York (or University)
Hospital Institute of Rehabilitation Medicine, more
commonly known as the Rusk Institute. There he
reviewed his vocational options, decided on the
insurance industry and returned to the Boston area to
make his way in the world of business. After applying
to several large insurance companies, he finally settled
on John Hancock and became a management trainee at
$100 a week.

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“I started the year after I got hurt and only three
months after I was out of the hospital, so I really didn’t
know what I was going to be able to do. I had the
degree, but I didn’t know whether I’d be able to
perform on the job. And they didn’t know either. So we
figured we'd do this for a year. At the end of a year it
looked good to both of us—I liked them and they liked
me. So I’ve gone up through the ranks, done a lot of
systems work and now I’m assistant manager of a unit
of 72 people. In August I’m getting promoted to a
systems job, as a systems analyst in the new business
department, so things are working out well. Jobwise,
it’s been terrific. It’s been a good 13 years.”

So much for a business career. Everything Rob
does seems to be like that, done directly and efficiently,
with no false starts. He needed to drive to work, so he
bought a car and now drives 18 miles each way, winter
and summer, between suburban Wayland and
downtown Boston. He wanted to become completely
independent so he worked at it for two or three years
until he succeeded.

“To be able to do all the bathroom stuff, all the
bowel and bladder routine, the dressing, the general
food preparation, driving —it’s really important. I’m not
sure I’d want to live alone, in fact I’m sure I would not
want to live alone, because it’s a lot of work. I also
know that if I had to, I could. And I have done it for
extended periods of time.”

He became active in the New England Spinal Cord
Injury Foundation, one of the two parent organizations
now merged in NSCIF: “I’ve done a lot of work with
the New England group, and a lot of that has been
speaking to groups about SCI, about attitudinal
barriers, people with disabilities, rehabilitation,
vocational stuff, architectural barriers, the whole thing.”

For example, Rob feels that attitudinal barriers are
largely a matter of people seeing the wheelchair more
than the person who occupies it. People are awkward
because they’re unsure of themselves.

“I try to get right out in the middle of the group,
so they’re all around me, and then I say, Now this is
maybe the first opportunity for you to look at
somebody in a wheelchair and really stare and really get
a good look, because usually when they’re kids their
mothers tell them, Ooh, Bobby, don’t look. So I get in
front of a group and give them a chance to look. I
know that first, they’re looking at the wheelchair, but
I also know that they’re looking at the person in the
wheelchair. So it gives them an opportunity to sort of
personalize themselves with someone who has a
disability. It’s a good ice breaker.”

Recreation: Bowling in the winter and boating in
the summer. He keeps his 17 foot outboard on Lake
Winnepesaukee in New Hampshire. Although he needs
help transferring from the dock, he drives the boat from
a locked down wheelchair.

“The nice part about having the boat is that on
summer days I can be with my friends all day long, and
instead of sitting by the side of a tennis court watching
everybody have fun, I’m right in the middle of
everything. In fact, I’m supplying the fun. The fun is
something that I’ve brought along, and people can swim
off the boat, they can water ski, they can sleep, they
can drink, they can relax, they can fish —there’s
any number of things people can do from a boat and if
a quad’s in the middle of all that, it’s terrific.”

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Friends: “Relationships with friends are very
important to everyone, but I think that people with
disabilities tend to withdraw frequently from
relationships that they’ve had or potentially can have,
because they might feel inadequate or like they just
don’t have anything to offer to the relationship. And
that’s something that everyone with a disability has to
overcome. Once they realize that there is a barrier there,
but that there is something they can do about it, I think
that’s the first step. And then they have to go about the
business of deciding in their own minds that they do
have something to offer and that given the disability
and given the difficulties that are involved with the
wheelchair and the things they can’t do, that they’ve got
to key on the things they can do and the things that
they can give to other people.”

And a final admonition: “A lot of newly injured
people see films of paras and quads having a good time,
going out in their own boats, bowling, doing wheelchair
sports, having good relationships, and it’s almost like
the pitch is *Get a SCI and start enjoying life*. That’s not
where it’s at. It’s not that way at all. This all looks like
a lot of fun, but it’s a substitute for what we all knew
and enjoyed before. The notion that the SCI doesn’t
exist is wrong. It is there, it is present, it’s something
that somebody with a cord injury has to adapt to and
adjust to and live with. And that’s how it is. It’s tough,
but once you’ve sunk down low enough, then you can
start to climb back out. And when you start to realize
that you do have something to offer, then you realize
that the fun and games are in fact enjoyable and
rewarding.”

John Galland
------------

“I had a friend come to me in the hospital and he
said, Look, I just came in to ask you, do you want the
tablet? And this guy is real physical, and we used to do
a lot of stuff together, and I looked at him and said,
God, you almost understand, don’t you? It was really a
very touching moment in terms of the empathy he had
for the whole helpless condition.”

That’s about the way John was thinking when we
first met in 1971. He had some strong scruples about
doing himself in, but rather wished the accident had
taken care of it for him. He acted wired —he couldn’t
seem to articulate a sentence without popping a wheelie
at the same time. Just another hyperactive kid from
Texas.

I ran into him at Craig a couple of years later, and
we recorded his thoughts on tape. The bitterness was
still there, but he had become very analytical about his
condition. In fact, he was so intelligently eloquent about
why being paralyzed is less fun than the circus that his
voice ended up as a major part of the soundtrack to
*Changes*, the film I was working on at the time. Yet his
whole psyche seemed somehow brittle, as if one part of
his brain didn’t quite believe what another part was
telling him. He was fighting something, and the fight
was drawing down his energy.

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Now, in 1979, we’re talking at my house. He
exudes so much physical and mental health, I want to
excuse myself to go do push-ups. He’s an extremely well
person.

Gurdjieff, and others, have described energy as
manifesting itself in three ways: physical, intellectual
and emotional. While a few of us are wondrously
balanced in our manifestations, most of us express
ourselves most fully in only one of the three ways.
John’s way is physical. That’s not to say that he’s
intellectually or emotionally deficient, but that
whatever he *is* is best expressed physically. And with
John, it’s not just a need to be physically active, since a
wheelchair marathon would satisfy that need, but it’s a
need for *risk*. He’s a risk person. So am I, which
explains why it took me so long to recognize it in John.
Most of us aren’t. Risk is what makes John whole. Risk
is what *has* made him whole.

John was always a righteous athlete. Whatever he
did, he did as hard as he could. He tried to expand his
limits in everything. In 1971, he actually succeeded in
skiing through a tree, rather well above snow level, but
it left him a T10,11 para. It was three days after his
twentieth birthday.

After two weeks in Grand Junction, Colorado, and
six months in Dallas, “I got up in a chair and was just
freakin’ out, goin’ Boy, if this is the life afterward, give
me the gun. I want it.”

“I said, Look something’s gotta happen. So they
sent me up to Craig for a month and a half. Craig
allows you your physical limits — whatever you want to
do, that’s cool. And it’s really unique. Because I was
goin’ down stairs in my chair, sittin’ on the floor and
fallin’ over, and nobody minded. It wasn’t as if I was
made of eggshells. And so I came away sayin’ *Yeah! It’s
gonna be alright*.”

That was when I first met John, and I reminded
him that he still wasn’t all that keen on the joys of
paralysis.

“Right. It took about five years, and then the
enjoyment began to return. I can go out and crash
around in the woods and take a certain pleasure in
doing things. I guess I lost the comparative reality.”

Comparative reality?

“Just the whole thing of always comparing yourself
to what *was*, what you *could* do. Jesus, how futile that
is. And I had to get rid of it. And the way I got rid of
it was through crashing around.” John showed me what
he meant by crashing around —he wheelied down the
seven steps of my front yard for starters, did it again
and splattered on the driveway, but was undamaged
and undismayed —“You gotta learn how to fall” —then
zipped down the steepest part of the hilltop I live on
just for the hell of it. He takes wheelchairs where
angels, able bodies and off-roaders fear to tread. “That
was a real big attitudinal change, because it’s just
suicide to keep comparing yourself to history. What
does that have to do with anything now? You can
bang your head against that wall only so long.

“After five years of hanging out and being high all
the time, trying to run away from it, I finally got to the
place where I was convinced I wasn’t all that fragile.
You have to figure out what makes the difference for
you. For me, the physical risk, getting out in the woods
by myself — Like I said, I lost my comparative reality.”

More about risk. Since I expended most of my pre-accident
energy on climbing mountains — difficult ones,
sometimes previously unclimbed, often at ridiculous
altitudes and latitudes —I was constantly asked about
risk. Why should risk appeal? Isn’t risk the opposite of
life? Why jeopardize what can’t be replaced? Well, I'm a
veritable fount of answers, both corny and profound.
But all you really need to know is that risk enhances
the life experience for some of us. John is equally
unwilling to get specific: “I can’t tell somebody with
righteous fervor that this is the way it should be,
because everybody’s a different case. And there’s
nothing that you know for sure about anybody. That’s
another thing that being in a chair has taught me.”

But for him: “In a physical sense, I’m much more
whole, because I consider all the possibilities that I
have and don’t limit myself. When I was a walker,
I didn’t want to do a lot of things because they
weren’t chic enough or they didn’t have enough
mystique or they weren’t tough enough. And nowadays
I’m not that way. In a sort of psychic or mental
sense, I’m much more whole because I’ve got
so much more perspective. One thing the chair
has brought me is perspective.” Maybe
you’re maturing? “Heaven forbid. No, I
feel so much better now because I’m not
a bitter, petulant little boy like I used to be.”

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So, although John has not picked up his bed and
walked, he has wheeled far into the wilderness. But
what does he do in real life? He’s a professional student.

“I enjoy learning. I'd find a good teacher and study
economics for two years. And I studied political theory
for two years. I was a pre-med for a year and a pre-law
for a year. So now I realize I’ve got 140 hours and no
degree over six years.” Do they give a degree in
becoming a renaissance man? “No, but that’s what I’d
be going for.”

His present aspiration is to get a degree in
psychology, because Texas needs help. He wants to
form a private resource and service corporation to
influence attitudes and legislation. “There’s a lot of
folks in chairs in Texas who are not at all *out*. A lot of
homebodies in wheelchairs, because there is so little
information and a great suspicion of social services. A
hell of a suspicion.” Why is that? “I think it’s because of
the war. Not World War One or anything like that, but
the *Civil* War.”

In the meantime: “I do some silver smithing, I live
a simple lifestyle, and I eat lots of beans and rice and
tortillas.”

Does he have a hot tip? Yep. Two of ’em.

“Plant your corn early. Sleep Dancer in the
fourth.”