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372426323
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Sexuality Questionnaire [1974-1977] [2]
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372426323
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Sexuality Questionnaire [1974-1977] [2]
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Lex Frieden Collection: Records on Disability Rights
Printed Materials
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Originally Processed With FOIA(s):
FOIA Number:
S
S
FOIA
MARKER
This is not a textual record. This is used as an
administrative marker by the George Bush Presidential
Library Staff.
Record Group/Collection:
Donated Historical Materials
Collection/Office of Origin: Frieden, Lex, Collection
Series:
Printed Materials
Subseries:
Reference Materials
OA/ID Number:
52160
Folder ID Number:
52160-006
Folder Title:
Sexuality Questionnaire [1974-1977] [2]
Stack:
Row:
Section:
Shelf:
Position:
67112-1209G
PRINTED IN ENGLAND
(From questionnaire)
Date
Interviewer
INDIVIDUAL INTERVIEW SCHEDULE
*Name:
*Date of Injury:
1. How were you injured?
record narrative
Transportation
Personal Assault
Sport
Other
auto
gunshot
water
fall
motorcycle
stabbing
winter
falling object
pedestrian
blunt trauma
field
other
other
other
other
2.
Interviewer judgement: The subject's involvement in the injury was
passive,
active,
indeterminant (see supplemental instructions for definition)
3. Did you know right away what happened?
record narrative
no
yes, but not aware of permanance
yes, aware of consequences at the time
4. At the time of your injury, what were your feelings?
record narrative
pain
fear
stunned-no feelings
thought I was going to die
don't remember
5. What hospital were you taken to right after your injury? name:
6. Were you later taken to other hospitals? name(s): (s):
7.
Initial hospitalization:
rehabilitation center,
not a comprehensive rehabi-
litation hospital (see supplemental instructions) )
8. Altogether, about how many weeks were you in these hospitals before you went home for
more than one month?
weeks
9. During this period of initial hospitalization did you receive physical therapy?
record narrative
10.
Description of P.T.:
none,
limited,
comprehensive (see supplemental
instructions for definitions)
11. When were you told how much improvement you could expect in your physical ability?
within 1 week
more than 3 mo.
2-4 weeks
1-3 months
never told what to expect
2
12. Who told you?
Doctor
Relative or friend
Nurse
Orderly or aide
PT
OT
Psychologist or Counselor
Other hospital worker
Other
13. What were your reactions?
record narrative
Didn't believe them: determined to do better
Sad or depressed
Angry
Other
Don't remember
14. Did you have any complicating injuries in addition to your spinal cord injury?
no
internal organ damage
head
amputation
bones
other
lung collapse
15. Did you have some medical complications during your first hospitalization?
No
vascular
musculoskeletal
urologic
neurologic
psychological
respiratory
decubiti
gastrointestinal
allergic reaction
16. Can you think of any turning points or anything that happened in the hospital that
seemed to have a major effect on your recovery or in your feelings about what happened
to you?
record narrative
no
medical
don't remember
personal-interpersonal
17. What family members spent the most time with you at the time of your injury?
no one in particular
sibling(s)
mother
children
father
other relatives
spouse
18. How did they react to your injury?
record narrative
19. How did your injury change your relationship with them?
record narrative
PRINTED
3
20. Did they receive the information and/or counseling which they needed? record narrativ
Yes - received adequate information and counseling
Received information but not adequate counseling or support
Received some help, but not enough
No
Didn't need information or counseling
Other
Don't know
21. How ready were you for leaving the hospital physically?
record narrative
As ready as possible
Ready except for
Not ready physically
Don't remember
22. How ready were you for leaving the hospital mentally?
record narrative
Well prepared
Hospital environment "ideal" - real world a shock
Overly anxious to go - may have left too soon
Reluctant to leave hospital - had to be pushed
Poorly prepared
Other
Don't remember
23. Can you think of ways in which the rehabilitation staff could have better prepared you
leaving?
record narrative
No - everything possible was dons
Yes - more home visits or social excursions before leaving
Yes - more or better psychological preparation
Yes - more physical preparation
Yes - Other
No answer
24. When you were leaving the hospital, did you expect to return to school or work soon?
No
Yes, in 1-2 mo.
yes, definite plans for some future tir
25. When you were leaving the hospital did you expect to get out of the house often and to
see friends and do things socially?
No
yes, right away
yes, but not right away
26. When you were leaving the hospital, did you expect to spend a lot of time in bed?
No
Yes
27. Do you think the staff at the hospital expected the same things from you?
record narrative
No.
Yes
No sense of staff expectations
07112-1209G
PRINTED IN ENGLAND
4
28. Do you think your family expected generally the same things from you as you expected
of yourself?
record narrative
No
Yes
No sense of family expectations
Do you think your family expected you to return to school or work soon after your injur
No
Yes
Not known
this with your family then?
No
Yes
31. Was what actually happened soon after leaving the hospital different in any way from yc
own expectations?
record narrative
No
Yes, somewhat
Very different
ADL's
Personal
Mobility
Communication
Housekeeping
Driving
32. Are you taking care of yourself (ADL's) any more or less than when you left the
hospital? record narrative
No change
More - I am now doing
for myself which I didn't then
Less - I no longer do
for myself
Mixed gains and losses
33. How do you feel about having to depend on other people to do things for you? (ADL's)
record narrative
Enjoy having others care for me
Feel OK - no special problems
Was hard at first, but got used to it
Not too bad except for one or two specific areas
Moderate discomfort
Resentful of dependency. Very uncomfortable
Other
Not applicable
34. What things, if any, are hardest for you to accept help with?
Feeding
Wheelchair mobility
Urinary functioning or appliances
Transportation outside home
Bowel program
Transfers
Bathing or personal hygiene
Other
Dressing
None of the above
35. Have you had regular check-ups since your injury?
No
Yes - at least annually at UMH or SKI
Yes - at least annually with local physician or hospital
Have had same check-ups, but not regularly
67112-1209G
5
36. Have you been hospitalized for any medical problems since your initial hospitalization?
No
Yes
When
How long
For what reason
When
How long
For what reason
When
How long
For what reason
37. Have you had any medical problems since your initial hospitalization which did not
require hospitalization?
No
Yes
When
What
When
What
When
What
38. Have you had any other major medical complications ?
No
Yes record narrative
39. Have your medical problems interfered with your ability to work?
No
Yes
record narrative
40. Do you have any continuing pain? record narrative
No
Yes - does not interfere with functioning
Yes - limits functioning
IF yes
41. Source of pain:
record narrative
Paresthesias
Contractures
Headaches
Other
Not applicable
42. Do you have any continuing problems with spasticity?
record narrative
No
Yes, does not interfere with functioning
Yes, interferes with functioning
43. Are you currently taking any medications
No
Yes for what reason [record narrative]
PRINTED IN INGIAND
67112-12090
6
Living Arrangements
*Present living arrangements
*Level of satisfaction
44. Where did you live when you first left the hospital? After that, etc. record in months
1st
2nd
3rd
4th
alone (I)
with hired attendant (I)
with spouse or friends (I)
with parents or other relatives (D)
nursing home (D)
dormitory or boarding home (I)
other
45. If you had a choice, would you make any change in your present living situation?
record narrative
No
Yes: Move out of institution
Yes: Move into institution
Yes: Live with a different person(s)
Yes: Live in a different house or apartment
Yes: Live in a different city or town
Yes: Live entirely alone
46. (If yes,) what stops you from making this change? record narrative
finances
don't know where else to go
not able to manage on my own
parents (or other people I'm living with) would be hurt if I moved
have to finish school (or other special commitment) first
just waiting for the right time
other
not applicable
PREMILO, IN ENGLAND
07112-1209G
7
IF NOT WORKING
*You indicated on your questionnaire that you are not working because *
47. Could you tell me something about that?
record narrative
48. Are you looking for work now?
No
Yes
49.
IF YES
How are you going about it? record narrative
just waiting for something to appear
working with a vocational counselor
working with school placement
working with DVR
working with private employment agency
following up ads
other
not applicable
50.
How many job interviews have you had during the past month?
number
51.
IF NO
Have you actively looked for work at any time since your injury?
No
Yes
IF YES
How did you go about it?
record narrative
waited for something to appear
worked with vocational counselor
worked with school placement
worked with DVR
worked with private employment agency
followed up ads
other
not applicable
53.
Did you have any success?
record narrative
yes, found job
was offered job but didn't take it
no
not applicable
54.
How long did you continue looking?
less than 1 month
1-6 months
6 months - 1 year
1-2 years
longer than 2 years
not applicable
PRINTED IN ENGLAND
67112-1209G
8
5.
Why did you stop looking? record narrative
decided there wasn't any use
became depressed or discouraged
found other ways to usa my time
people suggested that I stop
found a job
not applicable
financial
56. Do you feel that you would be working if you wouldn't lose some of your/benefits
public
assistance?
record narrative
57. Given a choice, would you prefer to be working, or do you prefer things the way they are
record narrative
prefer things the way they are
prefer to be working
58. Do you expect to be working in the near future?
record narrative
No
Yes
59. Do you think your family expects you to be working in the near future? record narrative
No
Yes
60. Have you discussed your going to work with your family? record narrative
No
Yes
61. What types of conditions would you like to have in a job? record narrative
type of job
convenience to house
hours
other
salary
62. Have you worked anywhere since your injury?
No
Yes
if No, turn to page 16
Most recent post injury job 1.
63. What was the job title?
64. What exactly did you do on this job?
record narrative
65. How many hours per week did you work?
hours
66. What was your income?
dollars per
PRINTED IN ENGLAND
67112-1209G
9
7. When did you work there?
start
end
8. How long were you unemployed before finding this job?
months
9. What were the reasons for your not working during this time?
record narrativa
0. What did you do with your time while you were unemployed before you found this job?
record narrative
1. How did you find this job? ?
on my own
friend or relative
DVR
employment service
college or school placement
same place as pre-injury job
other
2. How long did you actually look for this job?
months
3. How many Jobs did you apply for before you got this job?
number of jobs
4. Were there any special changes made on the job for you to do this work? record narrative
no
modified hours
architectural barriers
lower production standards
duty modifications
other
5. Did you come up against any problems in working?
record narrative
no
limited sitting tolerance
didn't pay well enough
transportation problems
conflict with boss or workers
other
couldn't work fast enough
6. What do you consider to have been the good things about that job?
record narrative
7. What do you consider to have been the bad things about that job?
record narrative
8. All in all, how satisfied were you with that job?
record narrative
9. Why did you leave that job? record narrative
O. Have you had any other jobs since your injury?
no
yes
If no, go to page 16
Most recent post injury job
2.
1. What was the Job title?
2. What exactly did you do on this job?
record narrative
3. How many hours per week did you work?
hours
4. What was your income?
dollars per
5. When did you work there?
start
end
PPINTED
IN
67112-1209G
10
36. How long were you unemployed before finding this job?
months
37. What were the reasons for your not working during this time?
record narrative
38. What did you do with your timo while you were unemployed before you found this job?
record narrative
39. How did you find this job?
on my own
college or school placement
friend or relative
same place as pre-injury job
DVR
other
employment service
D. How long did you look for this job?
months
21. How many Jobs did you apply for before you got this job?
number of Jobs
2. Were there any special changes made on the job for you to do this work?
record narrative
no
modified hours
architectural barriers
lower production standards
special equipment
other
duty modifications
93. Did you come up against any problems in working?
record narrative
no
limited sitting tolerance
didn't like the job
transportation problems
conflict with boss or workers
other
wouldn't work fast enough
94. What do you consider to have been the good things about that job? record narrative
95. What do you consider to have been the bad things about that job?
record narrative
96. All in all, how satisfied were you with that job?
record narrative
97. Why did you leave that Job?
record narrative
98. Have you had any other jobs since your injury?
no
yes
If no, go to page 16
Most recent post injury job 3.
99. What was the job title?
00. What exactly did you do on this job?
record narrative
PLINTED
IN
11
101. How many hours per week did you work?
hours
102. What was your income?
dollars per
103. When did you work there?
start
end
104. How long were you unemployed before finding was job?
months
105. What were the reasons for your not working during this time?
record narrative
1.06. What did you do with your time while you were unemployed before you found this job?
record narrative
107. How did you find this job?
on my own
college or school placement
friend or relative
same place as pre-injury Job
DVR
other
employment service
108. How long did you look for this Job?
months
109. How many jobs did you apply for before you got this job?
number of jobs
110. Were there any special changes made on the job for you to do this work?
record narrative
no
modified hours
architectural barriers
lower production standards
special equipment
other
duty modifications
111. Did you come up against any problems in working?
record narrative
no
limited sitting tolerance
didn't like the job
transportation problems
didn't pay well enough
other
conflict with boss or workers
couldn't work fast enough
112. What do you consider to have been the good things about that job?
record narrative
113. What do you consider to have been the bad things about that job?
record narrative
114. All in all, how satisfied were you with that job?
record narrative
115. Why did you leave that job?
record narrative
116. Have you had any other jobs since your injury?
no
yes
If no, go to page 16
117.
IF YES
Title:
Duties:
Dates:
Salary:
Reason for leaving:
Description of gaps in employment:
repeat for any further post-injury Jobs
12
[f working
*current employment:
full
part
*satisfaction with employment:
18. What is the title of your job?
19. What exactly do you do on your job?
record narrative
L20. How many hours per week do you work?
hours
L21. What is your income?
dollars per
L22. When did you start working on this job?
date
L23. How long were you unemployed before finding this job?
months
124. What were the reasons for your not working during this time?
record narrative
L25. What did you do with your time while you were unemployed before you found this job?
record narrative
L26. How did you find this job?
on my own
college or school placement
friend or relative
same place as pre-injury job
DVR
other
employment service
127. How long did you actually look for this job?
months
28. How many jobs did you apply for before you got this job?
number of jobs
29. Were there any special changes made on ths job for you to do this work?
record narrative
no
modified hours
architectural barriers
lower production standards
special equipment
other
duty modifications
130. Have you come up against any problems in working?
record narrative
no
can't perform as fast as I would like
can't get a job I really like
limited sitting tolerance
conflict with boss or workers
transportation problems
architectural problems
other
can't perform some required duties
131. What do you consider to be the good things about your job?
record narrative
132. What do you consider to be the bad things about your job? record narrative
133. All in all, how satisfied are you with your job? record narrative
Financial benefits and
134. Why are you working if you could be getting enough money to live on with public
assistance and not be working?
record narrative
13
135. Do you expect to be making any changes in your working status in the near future?
record narrative
136. Do you feel that your family expects you to continue working?
record narrative
137. Have you discussed your working or not working with your family? record narrative
No
Yes
138. If it were available, what types of conditions would you like to have in a job?
record narrative
type of Job
hours
salary
responsibility
independence
status
location
139. Have you had any other jobs since your injury?
no
yes
If no, go to page 16.
Most recent post injury job
2.
40. What was the job title?
41. What exactly did you do on this Job?
record narrative
42. How many hours per week did you work?
hours
43. What was your income?
dollars per
44. When did you work there?
start
end
45. How long were you unemployed before finding this job?
months
146. What were the reasons for your not working during this time?
record narrative
147. What did you do with your time before you found this job?
record narrative
148. How did you find this job?
on my own
college or school placement
friend or relative
same place as pre-injury job
DVR
other
employment service
149. How long did you look for this job?
months
14
150. How many jobs did you apply for before you got this job?
number of jobs
151. Were there any special changes made on the job for you to do this work?
record narrativ
modified hours
no
architectural barriers
lower production standards
special equipment
other
duty modifications
52. Did you come up against any problems in working?
record narrative
no
limited sitting tolerance
didn't like the Job
transportation problems
didn't pay well enough
other
conflict with boss or workers
couldn't work fast enough
153. What do you consider to have been the good things about that job?
record narrative
154. What do you consider to have been the bad things about that job?
record narrative
155. All in all, how satisfied were you with that job?
record narrative
156. Why did you leave that job?
record narrative
157. Have you had any other johs since your injury?
no
yes
If no, go to page 16.
Most recent post injury job
3
158. What was the job title?
159. What exactly did you do on this job? record narrative
160. How many hours per week did you work?
hours
161. What was your income?
dollars per
162. When did you work there?
start
end
163. How long were you unemployed before finding this job?
months
164. What were the reasons for your not working during this time?
record narrative
165. What did you do with your time while you were unemployed before you found this job?
record narrative
166. How did you find this job?
on my own
college or school placement
friend or relative
same place as pre-injury job
DVR
other
employment service
167, Hay long old you look for this job?
months
PRINTED IN ENGLAND
67112-1209G
15
L68. How many jobs did you apply for before you got this job?
number of jobs
169. Were there any special changes made on the job for you to do this work?
record narrativ
no
architectural barriers
modified hours
special equipment
lower production standards
duty modifications
other
L70. Did you come up against any problems in working?
record narrative
no
limited sitting tolerance
didn't like the job
transportation problems
conflict with boss or workers
couldn't work fast enough
didn't pay well enough
other
171. What do you consider to have been the good things about that job?
record narrative
172. What do you consider to have been the bad things about that job? record narrative
173. All in all, how satisfied were you with that job?
record narrative
174. Why did you leave that job?
record narrative
175. Have you had any other jobs since your injury?
no
yes
If no, go to page 16.
176.
If Yes
Title:
Duties:
Dates:
Salary:
Reason for leaving:
Description of gaps in employment:
repeat for any further post injury jobs
16
Pre injury job history
77. What is the last Job you had before your injury?
If no pre-injury work, go to page
19 (DVR)
78. What was the job title?
79. What exactly did you do on this job?
record narrative
80. How many hours per week did you work?
hours
31. What was your income?
dollars per
82. When did you work there?
start
end
33. How long were you unemployed before finding this job?
months
34. What were the reasons for your not working during this time?
record narrative
35. What did you do with your time while you were unemployed before you found this job?
record narrative
36. How did you find this job?
on my own
college or school placement
friend or relative
other
DVR
employment service
7. How long did you actually look for this job?
months
18. How many jobs did you apply for before you got this job?
number of jobs applied
for
9. Did you come up against any problems in working?
record narrative
no
couldn't work fast enough
didn't pay well enough
couldn't perform required duties
conflict with boss or workers
transportation problems
didn't like the job
other
O. What do you consider to have been the good things about that job?
record narrative
1. What do you consider to have been the bad things about that job? record narrative
2. All in all, how satisfied were you with that job?
record narrative
3. Why did you leave that job?
record narrative
4. Had you planned to make that job or work like it your career?
no
record narrative
yes
5. Did you have any other jobs before your injury?
no
yes
If to
no, go page 19,OUR
17
Pre injury job history 2
196. What was the job title?
197. What exactly did you do on this job?
record narrative
198. How many hours per week did you work?
hours
199. What was your income?
dollars per
200. When did you work there?
start
end
201. How long were you unemployed before finding this job?
months
202. What were the reasons for your not working during this time?
record narrative
203. What did you do with your time while you were unemployed before you found this job?
record narrative
204. How did you find this job?
on my own
employment service
friend or relative
college or school placement
DVR
other
205. How long did you actually look for this job?
months
206. How many jobs did you apply for before you got this job?
number of jobs applied
207. Did you come up against any problems in working?
record narrative
no
couldn t work fast enough
didn't like the job
couldn't perform required duties
didn't pay well enough
transportation problems
conflict with boss or workers
other
208. What do you consider to have been the good things about that job?
record narrative
209. What do you consider to have been the bad things about that job? record narrative
210. All in all, how satisfied were you with that job?
record narrative
211. Why did you leave that job?
record narrative
212. Had you planned to make that job or work like it your career?
no
yes
record narrative
13. Did you have any other jobs before your injury?
no
yes
If no, go to page 19 (DVR).
18
Pre injury job history
3
14. What was the job title?
15. What exactly did you do on this job?
record narrative
16. How many hours per week did you work?
hours
17. What was your income?
dollars per
18. When did you work there?
start
end
19. How long were you unemployed before finding this job?
months
20. What were the reasons for your not working during this time?
record narrative
21. What did you do with your time while you were unemployed before you found this job?
record narrative
222. How did you find this job?
employment service
on my own
college or school placement
friend or relative
other
DVR
223. How long did you actually look for this Job?
months
224. How many jobs did you apply for before you got this Job?
number of jobs applied
for
225. Did you come up against any problems in working?
record narrative
no
couldn't work fast enough
didn't like the job
couldn't perform required duties
didn't pay well enough
transportation problems
conflict with boss or workers
other
226. What do you consider to have been the good things about that job?
record narrative
227. What do you consider to have been the bad things about that job? record narrative
228. All in all, how satisfied were you with that job?
record narrative
229. Why did you leave that job?
record narrative
230. Had you planned to make that job or work like it your career?
no
yes
record narrative
231. Did you have any other jobs before your injury?
no
yes
If no, go to page 19 (DVR).
19
232.
If Yes:
Title:
Duties:
Dates:
Salary:
Reason for leaving:
Description of gaps in employment:
repeat for any further pre-injury jobs
DVR AND OTHER COMMUNITY SERVICES
233. Were you ever a DVR client?
no
yes
234.
If
no Have you ever had any testing related to going to work?
no
yes
Where
When
235.
Have you ever talked to a counselor or anyone else about going to work?
no
yes
Who
Where
When
236.
If Yes What did the services do for you?
record narrative
237.
How could they have been made better for you?
record narrative
238. Can you think of any other kinds of community services that you need which haven't
been made available to you? record narrative
239. Are you getting any kind of public support of financial assistance?
240. If receiving support
What kind of support are you getting?
241.
How much do you get?
$
not known
242.
How do you feel about getting this assistance?
record narrative
243.
How long do you think it will be necessary to receive
support?
time
20
44. If not receiving support
Have you ever received any public support
since your injury?
no
yes
45.
If yes When?
start
end
Why are you not receiving it now?
record narrative
46.
How do you feel about the idea of reçeiving
public assistance? record narrative
47.
Do you feel it will ever be necessary for you
in the future?
yes
no
rècord narrative
chool
In school now
Type of program
48. How many total years of education do you have?
49. Have you been in school since your injury?
No
Yes occasional course
Yes "Full time - part time"
50.
If yes, how did you make (arrive at) your decision to go to school?
was a student at time of injury - continued later
Personal decision
Counseling at hospital(s)
DVR counseling
Family encouragement
Other
51.
Did DVR help you financially?
no
yes
52.
Did (do) you need any special equipment or assistance to go to school?
No
Attendant
hours per day
Special transportation arrangements
Note taking
Testing
Credit load
Other
53.
Did you have difficulty making these special arrangements?
no
yes
record narrative
21
254.
Did (do) you have any problems in managing school work which never did get
resolved?
no
yes
record narrative
255. Do you have any plans for going to (or continuing) school in the future?
No
Yes, possibly
Yes, definitely
If yes, what school and program?
256. Do you think your family expects you to go to school in the future?
no
yes,
possibly
yes, definitely
record narrative
257. Have you discussed going to school with your family?
no
yes
Educational History
mark point of injury
258.
Major or
Degree or
School
Program
Dates
Certificate
Satisfaction
22
Social Life
* Level of satisfaction
* Marital status
* Dating frequency
Visitor frequency
"Outing" frequency
* Activities
TV or radio
attending sports events
reading
group activities
hobbies
cards
visiting in home
talking books
visiting away from home
other
59. How do you spend a typical day?
record main activity
7
5
8
6
9
7
10
8
11
9
12
10
1
11
2
12
3
1
4
2
260. What was your social life like before your injury?
record narrative
similar to present social life
more active than now
less active than now
other
261. What was your social life like for the first 6 months to 1 year after you came out of
of the hospital for the first time? How much contact did you have with people?
record narrative
Isolated
Spouse and/or relatives only
One or two friends only
Combination of 2 & 3 above
Interacted with a number of people
Number of friends dwindled
Other
262. How often did you go out socially during that time?
Stayed at home all the time
Went out rarely
Went out 1-3 times per month
Went out 1-2 times per week
Went out 3 or more times per week
263. Did you have any worries or fears about going out?
No
Yes, reluctant to go almost anywhere
Some mild reservations
Other
Yes, about going to some places
23
264.
Which
places did you feel most comfortable going during the first 6 months
to 1 year after you came out of the hospital?
www. Krecord narrative]
Most
Least
Places where I could stay in my car (eg. drive-in movie or bank)
Private home(s)
Stores gas stations, bank, etc
Church
Barber or beauty shop
Restaurant
Bar or tavern
Theater or concert hall
Dentist or Doctor's office
Other ffice for appt (eg. DVR, attorney, etc.)
Social club or organization (eg. VFW, Shrine, etc.)
No preferences
Other
265. Why do you think you the most comfor bable going there record narrative
Frecord narrative)
266.
Which or places did you feel least comfortable going during this time
267. Why Uhink the least table going there? record narrative
268. What is your social life like now? How much contact do you have with people?
record narrative
Isolated
Interacted with a number of people
Spouse and/or relatives only
Number of friends dwindled
One or two friends only
Other
Combination of 2 & 3 above
269. How often do you go out socially now?
Stay at home all the time
Out 1-2 times per week
Out rarely
Out 3 or more times per week
Out 1-3 times per month
270. Do you have any worries or fears about going out?
No
Some mild reservations
Yes, about going to some places
Yes - reluctant to go almost anywhere
Other
[secord narrative]
271. Which of those places do you feel most comfortable going now?
F
Most Least
Places where I could stay in my car (eg. drive-in movie or bank)
Private home(s)
Stores, gas stations, bank
Church
Barber or beauty shop
Restaurant
Bar or tavern
Theater or concert hall
Dentist or Doctor's office
Other office for appt (eg. DVR, attorney, etc.)
Social club oT organization (eg. VFW, Shrine, etc.)
24
272. Why do you think you the most comfortable going there? record narrative J
Frecord narrative]
273. Which places do you feel the least comfortable going now? [repeat
274. Why do you think you are the least comfor table going there? record narrative
75. Did any experience in particular affect your willingness to go out? (Describe,
either positive or negative)
record narrative
no
yes
76. In what ways has your social life changed since. that experience? record narrative
77. Are there any people you consider really close to you now?
no
not sure
yes
78. If yes, identify him/her
Spouse
Same sex friends (s)
Offspring
Opposite sex friend(s)
Parent
Other
Other parents
279. Did you know them before your injury?
No
Yes
280. How recently have you seen them?
Within the past week
Within the past month
Within the past year
Longer than the past year
Other
281. Are most of your current friends people that you have known from before your injury or
are they people that you have met since your injury?
pre
post
282. Have you ever belonged to an organization for people with disabilities?
no
yes
283. Why or why not?
Don't know of any such organizations
Don't enjoy being with handicapped people
Too busy
Not a "Joiner"
Feel comfortable with disabled people
Friend or acquaintance invited me to join
I enjoy their meetings and/or activities
Want to contribute toward their goals
Other
25
284. Do you feel you have more in common with most people with disabilities or with most
with disabilities or with most people who are not disabled? record narrative
285. What kind(s) of transportation do you use?
drive own auto or van
someone drives me in auto or van
special systems (e.g. Handicabs)
public transportation
none
other
286. If drive
Are you able to transfer and handle your chair independently?
yes, independent with auto
yes, independent with van
no, need some assistance
Sexual and Marital History
* Present marital status
* Dating
Satisfaction with sex life
If single:
287.
Have you ever been married?
no
yes
288.
If yes,
When?
Were you divorced before or after your injury?
before
after
289.
If after, was your divorce related to your injury? record narrativo
No
Possibly
Likely
290.
[
marriage and divorce before
marriage before and divorce after
marriage and divorce after
]
291.
If no, what effect do you think your injury has had on your marital status?
record narrative
none
possibly related
likely related
26
If married:
292.
How long have you been married?
years
before injury
after injury
293.
Is this your first marriage?
no
yes
294.
If no, what were the dates of your former marriage(s)
ended before injury
ended after injury
295.
What effects did your injury have on this marriage?
record narrative
little or none
mixed
positive
don't know
negative
doesn't apply
296.
What effects has your injury had on your present marriage?
record narrative
little or none
no response
positive
don't know
negative
297.
Interviewer judgement: What are the main benefits the subject gets out of the
marriage?
Companionship
Physical convenience (eg.help with adl's)
Financial
Avoid loneliness
Psychological support
Other
Children
No response
298.
How happy do you consider your marriage to be?
record narrative
299.
Interviewer judgement: rate marriage on 1-5 scale
1) very unhappy
4) somewhat satisfying
2) somewhat unsatisfying
5) very happy
3) like most marriages
]
300.
Do you have any children
no
yes
If yes, age(s)
301.
If no, was this a deliberate decision? How do you feel about this
decision?
record narrative
302. Do you remember whether you received any information or counseling about sexual
functioning from anyone who was involved in your treatment?
received no counseling
received counseling
don't remember
27
03.
If yes, who talked with you about it?
Physician
oT
Nurse
Psychologist or counselor
Orderly or aide
Social worker
PT
Other
04.
Did you find out anything useful?
Negative experience - incorrect or inhibiting exchange
No - nothing useful
Yes - received useful information (specify)
Yes - discussion was emotionally helpful or freeing
Other
5. Do you remember feeling a need for information or counseling which was never iven?
record narrative
no
yes
6. Had you experienced sexual intercourse prior to your injury?
no
yes
)7. Do you think this has R ffected your present sexual adjustment?
no
yes
record narrative
8. Are you currently having a sexual relationship?
no
yes
If no, go to p.28
9. If yes, present sexual relationship
Do you have sexual intercourse?
no
yes
.0.
If no, what is the nature of your sexual relationship?
record narrative
1.
When did you last have sexual intercourse?
within 1 month
within 6 months
within 1 year
2. Could you tell me something about your current partner?
record narrative
same sex
opposite sex
able bodied
disabled
3. What kinds of changes have you had to make in your sexual activity since your injury?
record narrative
4. Are there any changes that you would like to make to improve your sex life?
record narrative
[go to page 29]
INTERVIEWER
DATE
INTERVIEW #
TIRR SEXUALITY INTERVIEW
1. How old were you on your last birthday?
2. What is your current marital status?
DO NOT ASK Q's 3 and 4
3., Sex:
Female
Male
4. Race:
5. attending? What is the highest grade of school you have completed or are currently
6. Are you presently employed?
full-time
part-time
-
IF EMPLOYED, GO TO Q. 9
no
7. What is the source of your income?
8. What is the amount of your monthly income?
GO TO Q. 11
9. What is your current occupation?
10. In the past year, what was your average monthly income?
11. What is your religious preference?
Would you say you are:
Very religious
Moderately religious
Slightly religious
Not religious
12. When did your disability occur?
ENTER DATE
13. What is the level of your spinal cord injury?
14. Is your injury complete
or incomplete
15. What is your current level of sensation?
RECORD NARRATIVE
16. PROBE Do you have sensation anywhere below the level of injury?
GENITAL AREA ON MALE AND FEMALES IF NOT MENTIONED
LIST AREAS
17. that After your injury, were you ever told by health care
with you could be sexually active, either by self-masturbation professionals or
a partner?
Yes
No
IF NO, GO TO Q. 21
18, active? How soon after your injury were you told that you could be sexually
19. Who told you that you could be sexually active?
ENTER THE PROFESSION
20, When would you have liked to have been told?
21, during Would you have liked to discuss your sexuality with a professional
your hospitalization?
22, What would you have liked to discuss yes about your sexuality? no
YOUR NOW I SEXUAL AM GOING TO ASK SOME
RELATIONS PRIOR QUESTIONS TO ABOUT
23. necking Prior to and your petting? injury, had you engaged in any sexual YOUR activity INJURY beyond
Yes
No
24, site Of these sex? sexual activities, how many involved IF NO, partners GO TO Q. of 32 the oppo-
All
Most
Half
Less than half
25. sexual Approximately relations how with? many partners of the None opposite sex did you have
IF NO SAME SEX RELATIONS, GO TO 0,27
26. tions Approximately with? how many partners of the same sex did you have rela-
27. Of these
ENTER # OF PARTNERS BY TOTALLING LINES 25
you partners, cared how many were you emotionally involved with & (i.e., 26 e., someone
about a great deal) ?
28, relationship? With this/these partner (s), what do you feel you got out of the
RECORD NARRATIVE
29. What do you think your partner (s) got out of the relationship?
RECORD NARRATIVE
30. Where you ever married prior to your injury?
yes
no
31, How many times were you married?
32, Prior to your disability, had you had an orgasm (climax, come, a
heightened sense of pleasure that ends in a sudden drop-off) ?
yes
no
don't know
IF FEMALE, GO TO NARRATIVE INTRODUCTION
33, Prior to your disability, had you had an erection (hard-on, stiff
penis) ?
yes
no
don't know
34. Prior to your disability, had you had an ejaculation (shoot-off,
white fluid or semen coming from the penis) ?
yes
no
don't know
NOW I AM GOING TO READ A LIST OF SEXUAL ACTIVITIES
WANT YOU TO TELL ME HOW OFTEN YOU ENGAGED IN IT BE-
THAT PEOPLE OFTEN ENGAGE IN. FOR EACH ACTIVITY, I
HERE IS A CARD LISTING POSSIBLE ANSWERS.
FORE YOUR INJURY AND HOW ENJOYABLE IT WAS FOR YOU.
HAND RE-
WEEK", ENGAGE "USUALLY THE SPONDENT LETTER YOUR IN CARD SEXUAL OF REPLY YOUR INTERCOURSE YOU WOULD ANSWERS. ARE BE TO "2", TELL "ONE FOR AND ME INSTANCE, TO IF THE TWO YOU NUMBER TIMES FIND IF YOU A AND IT
I ENJOYABLE", YOU ANSWER WOULD BE "B". THEN,
WANT YOU TO COMMENT ON ANY PROBLEMS ASSOCIATED
WITH THE ACTIVITY, IF NOT A PROBLEM NOW, BUT WAS
A PROBLEM, PLEASE COMMENT ON HOW YOU SOLVED IT.
ACTIVITIES
FREQ ENJ.
COMMENTS
35. Self-masturbation
36, Masturbating your partner
37, Your partner masturbating
you
38. Intercourse
39, Mouth on partner's genitals
40, Partner's mouth on your
genitals
41, Performing anal intercourse
42. Receiving anal intercourse
43. Performing oral-anal contact
44. Receiving oral-anal contact
45, Using a vibrator on self
46, Using a vibrator on partner
47. Partner using a vibrator on
you
48. Using a penis substitute
(dildo)
49. Using any device to fit over
or around the penis to help
get it erect
50. Fantasy
DO YOU DAYDREAM ABOUT SEXUAL
ACTIVITY?
51, Orgasm in sleep (wet dream)
NOW I AM GOING TO BE ASKING YOU SOME QUESTIONS
ABOUT YOUR SEXUAL RELATIONS SINCE YOUR INJURY.
52, Since your injury, have you engaged in any sexual activity beyond
necking and petting?
yes
no
IF NO, GO TO Q. 118
53, Of these sexual activities how many involved partners of the opposite
sex?
All
Most
Half
Less than half
None
54, Approximately how many partners of the opposite sex have you had
sexual relations with?
IF NO SAME SEX RELATIONS, GO TO Q. 56
55, Approximately how many partners of the same sex have you had sexual
relations with?
56, Of these
TOTAL LINES 54 and 55
partners, how many have
you been emotionally involved with?
57, With this/these partner (s), what do you feel you got out of the
relationship?
RECORD NARRATIVE
58,, What do you think your partner (s) got out of the relationship?
RECORD NARRATIVE
59 Have your partners been; other spinal-cord injured
non-SCI handicapped\
other
able-bodied
personnel (hospital, nursing home, etc,)
health care
60, Were you married at the time of your injury?
yes
no
IF NO, GO TO Q. 64
61, Are you still married to the same person?
yes
no
IF YES, GO TO Q. 64
62, Have you re-married since your injury?
yes
no
63, What affect do you feel your injury had on your marriage?
64, Since your injury, has the importance of sex
increased
decreased
remained the same
65, Do you wear a urinary collecting device?
yes
no
GO TO Q. 68
66, What type of device?
67, What do you do with your urinary device prior to or during sexual
relations?
68, Do you require respiratory assistance for breathing?
yes
no
GO TO Q. 70
If yes, specify
69. How do you handle respiratory equipment when having sexual relations?
70, What kind of physical care do you
a, before having sexual relations? (For example, press on stomach
to empty bladder, use lubricating jelly, etc,)
b, during sexual relations?
C, after sexual relations?
71, Have you experienced dysreflexia? (elevated blood pressure, headache,
sweating, flushing, shortness of breath)
Yes
No
GO TO Q.74
72, How often do you have dysreflexia during sexual relations?
Always
More than half of the time
About half of the time
Less than half of the time
Never
73. What do you do about dysreflexia during sexual relations?
74, What areas of your body feel most pleasurable during sexual arousal?
75, How often do you experience any type of discomfort during sexual
activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
GO TO Q. 77
76, Describe what kind of discomfort and where it is,
77, Do you use contraceptive methods?
Yes
No
If yes, specify
78, In what places do you have sexual relations?
READ CATEGORIES
Regular bed
Sofa
In wheelchair
Car
Floor
Chair (regular)
Waterbed
Other (specify)
Which is most enjoyable?
79, What position do you find most satisfying for sexual relations?
Being on top
Side by side
Partner on top
Other (explain)
80. Do physical limitations determine your position preference?
yes
no
81, Who usually initiates sexual activity?
you
partner
82, How long do you usually spend in sexual activity in any one setting?
EXCLUDE PREPARATION PRIOR TO AND AFTER SEXUAL ACTIVITY
Specify
HOURS AND MINUTES
83, What is it that marks the completion of sexual activity; that is,
how do you know when it is over?
IF RESPONDENT SAYS "ORGASM" - ASK WHO HAS THE ORGASM
IF FEMALE, GO TO Q. 85
84, How often do you have erections during sexual activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
85, How often do you have orgasms during sexual activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
86, Is there one special sexual technique that is most successful in
helping you achieve an erection?
yes
no
If yes, specify
87., When did you first experience
orgasm
erection following
your injury?
PROBE FOR NATURE OF RELATIONSHIP WITH PARTNER; SEXUAL TECHNIQUES
Orgasm:
Erection:
88. Are your orgasms the same as, or different from, before your injury?
Same
GO TO Q. 90
Different
89, How are your orgasms different now?
IF FEMALE, GO TO Q. 91
90, How often have you ejaculated during sexual activity since your
disability?
Always
More than half of the time
About half of the time
Less than half of the time
Never
91, Have you conceived a child since your disability?
yes
no
If yes, was it conceived by sexual intercourse or by artificial
insemination?
IF MALE, GO TO Q. 93
92, How soon after you were injured did your menses resume and were
there any noticeable changes in your period cycle?
93, How soon after you were injured did you first attempt sexual activity
and could you describe for me the first attempt?
94. How long has it been since your last sexual relationship?
95, Since your injury, have your sexual experiences been mostly favorable
or disappointing?
Favorable
Disappointing
PROBE, HOW AND WHY FAVORABLE AND/OR DISAPPOINTING?
96. What kinds of changes have you had to make in your sexual life since
your injury?
RECORD NARRATIVE
97. Have you had trouble with any of the following?
Vaginitis
yes
no
Urethritis
yes
no
Bladder infections
yes
no
Did you or your doctor think it was related to sexual activity?
yes
no
IF YES, SPECIFY WHICH WAS THOUGHT TO BE RELATED TO SEXUAL
ACTIVITY,
98, How often does sexual activity cause and/or increase muscle spasms?
Always
More than half of the time
About half of the time
Less than half of the time
Never
GO TO Q. 101
99, Are they helpful or are they a problem during sexual activity?
Helpful
Problem
SPECIFY HOW
100. What do you do when spasms occur?
101. How often have you had a bladder accident during sexual activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
102, How often have you had a bowel accident during sexual activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
IF "NEVER" TO BOTH Q's 101 and 102, GO TO INTRODUCTION
103. What do you do to try to prevent these accidents?
NOW I AM GOING TO READ THE SAME LIST OF
SEXUAL ACTIVITIES THAT I READ EARLIER.
FOR EACH ACTIVITY, I WANT YOU TO TELL ME
HOW OFTEN YOU HAVE ENGAGED IN IT SINCE
YOUR INJURY AND HOW ENJOYABLE IT IS FOR
YOU. YOU ARE TO USE THE SAME RESPONSE
CARD. I WOULD LIKE FOR YOU TO ALSO COM-
MENT ON WHY YOU DO OR DO NOT ENGAGE IN
CERTAIN ACTIVITIES.
ACTIVITIES
FREQ ENJ.
COMMENTS
104, Self-masturbation
105, Masturbating your partner
106; Your partner masturbating
you
107, Intercourse
108, Mouth on partner's genitals
109, Partner's mouth on your
genitals
110. Performing anal intercourse
111. Receiving anal intercourse
112. Performing oral-anal contact
113: Receiving oral-anal contact
114. Using a vibrator on self
115. Using a vibrator on partner
116, Partner using a vibrator on
you
117. Using a penis substitute
(dildo)
118. Using any device to fit over
or around the penis to help
get it erect
119, Fantasy
DO YOU DAYDREAM ABOUT SEXUAL
ACTIVITY?
120, Orgasm in sleep (wet dream)
121
Are you currently as sexually active as you would like?
Yes
GO TO Q. 124
No
122. Why aren't you sexually active or as sexually active as you would
like to be?
a. religious or moral reasons
b. lack of contacts or partners
C, lack of privacy
d, lack of money
e. my lack of sexual interest
f. my partner's lack of sexual interest
g. my lack of information
IF CHECKED, ASK "WHAT TYPE OF INFORMATION"
h, my partner's lack of information
IF CHECKED, ASK "WHAT TYPE OF INFORMATION"
i. my fear
IF CHECKED, ASK "FEAR OF WHAT"
j. my partner's fear
IF CHECKED, ASK "FEAR OF WHAT"
k, problem with erections
1, physical difficulty in carrying out sex acts
m, I am not sexually desirable
n. I don't like my body
0, SCI-related physical problems (infections, contractures,
pain, spasticity, urinary, bowel or skin problems, etc.)
P. non-SCI related physical problems
q. I am too young
r. I am too old
S, other (specify)
123, Write in the letter of the single most important reason of those
listed above.
124. If you have any suggestions or comments you would like to share,
either personal or about the questionnaire, please do SO:
NARRATIVE DESCRIPTION OF PROPOSAL
A. INTRODUCTION
1. Objective:
In recent years there have been increasing efforts to make Opportunities for
housing, education, and employment available to physically handicapped persons.
The provision of such opportunities has permitted many individuals who were for-
merly isolated in institutions or dependent home situations to begin lives of in-
dependence and productivity. Yet there are countless other individuals particu-
?
larly the catastrophically disabled) who find it overwhelmingly difficult to assume
a radically changed role in life and meet all of the demands that the available
opportunities entail. Such persons may have the basic capabilities necessary to
become independent, but the gulf often seems immense between a protected institu-
tional or home atmosphere with for responsibilitie and a lifestyle in which the
individual alone must meet the responsibilities of his living situation (including
provisions for attendant assistance and transportation) and the demands of employ-
ment at a level that will permit financial self-sufficiency. Current programs are
not structured to permit gradual assumption of responsibilities which often makes
independence an all-or-nothing affair.
The objective of the proposed project is to develop and evaluate the effective- -
a
ness of several programs of transitional experience designed to foster the inte-
gration of severely physically handicapped individuals into their communities. Goals
the
of community integration include, establishment of independent living, involvement in
educational or vocational opportunities, and active social participation in the main-
stream of society.
2
Major tasks in meeting this objective will be
(a) to identify the techniques and skills by which independent and active
handicapped persons have achieved integration into their communities
(b) to devise learning experiences of various types whereby participants in
a transitional program can acquire these techniques and skills and can
assume responsibilities in a manageable sequence
programming
(c) to systematically evaluate the effectiveness of transitional learning
experiences for various types of participants
(α) to structure portions of the transitional program as self-contained units
that can be used in flexible combinations in a variety of contexts
3
Background:
Various kinds of background information and experience are relevant to each
of these major tasks.
(a)
In identifying the techniques and skills by which active handicapped persons
have become integrated into their communities
three years of experience in a previous
R&D residential project, "A Cooperative Self-Support System", have been of great
benefit.
(SRS R&D 13-P-
) Forty severely disabled young adults have lived
e
in this Cooperative Living project since it opened in January of 1972.
was a
for all residents,
residents
this
project WERE their first independent living experience, and for many
it provided their first opportunity to begin involvement in education, vocational
training, or employment. Twenty three of twenty six former residents have moved
on from Cooperative Living into. Go more independent living situationsin apartment
clusters or in various individual arrangements. Ten persons have secured full-
time employment, and many others have worked part-time. Four persons have married
and three have plans to marry. Results of the research on residents of Cooperative
Living have been reported in two summary progress reports, (Dtock, 1973 and Cole,
1974), and a final grant report is currently in preparation. (This project will
end May 31, 1975).
In addition to extensive information on changes in lifestyle and increasing in-
dependence of Cooperative Living residents, comparative information has also been
gathered on severely handicapped young adults living in a dormitory at the University
of Houston, in a number of nursing homes, and in three paatment clusters with
shared services, two of which developed as outgrowths of the Cooperative Living
project.
4
Extensive information on active handicapped persons in Houston is also
supplemented by data from other projects in independent living. In addition to
published reports, (
),
personnel of the proposed project have had personal contact with representatives
of the Center for Independent Living at Berkeley, the Creative Living project in
Columbus, Ohio, and the Center for Independent Living in Boston ( ACRM
).
Experience in the area of independent housing has provided a valuable aware-
ness of many areas important for attaining independence such as the advantages and
disadvantages of alternative ways of providing for attendant assistance or transpor-
tation. Experience of the vocational unit of TIRR has likewise provided valuable
insight into the techniques and skills required to support successful educational and
and vocational involvement (
). Published information
is also avialable on factors that contribute to vocational success. (
)
A study currently being conducted by the proposed Project Director and Research
Director focuses specifically on critical incidents experienced by catastrophically
disabled respondents from the time of injury through reintegration into the community.
Preliminary interviews based on a checklist of 80 possibly important incidents have
elicited extensive information about adaptation to a new social role and about
experiences of reintegration into an individual's family, social network, employ-
ment or educational context, and into the larger society. Results of this study
will have direct impact on the content of the proposed transitional project.
(b) Because transitional programming is a new area of emphasis in rehabilitation,
there is very little background material that directly pertains to the task of
devising transitional learning experiences for the physicaly handicapped. In some
respects the proposed project is analygous to the type of halfway house that is in-
tended as a short term residential experience to bridge the gap between some form of
5
institutionalization and full integration into the community (ref. Halfway House
Movement). Some patterns of operation from such houses may be relevant, such as
the program of trial work experiences used by a Houston halfway house for juvenide
offenders (
).
However, the proposed transitional project seems to differ in several important
respects from the general category of diverse organizations grouped under the term
"halfway houses". The proposed project is directed toward development of the whole
person who often has 3. more comprehensive set of needs than most halfway house
residents have. It will be geared toward active participant responsibility for setting
setting goals and scheduling learning experiences. And it will be strongly oriented
as a growth experience rather than being a static residential einvornment as is the
case with many halfway houses.
In developing transitional learning experiences for the proposed project,
another general learning model seems to be more useful than that of the hhlfway
house. This is the role-learning system used for integrating persons into professional
occupational statuses in our society (which is based on a transitional sequence
from formal learning through a period of internship to full certification of com-
petance). This pattern is found in the progression from apprenticeship througha
journeyman status to master craftsman and in the progression from formal education
in professional schools through a period of internship to eventual licensure as a
physician, lawyer, certified public accountant, architect, or teacher. Common to
this pattern of role-learning are the elements of (a) formal training, (b) modeling
by persons who have already attained the desired status, (c) guided practice in
actual work situations, and (d) independent assumption of a role. Details of how
this pattern can be adapted for transitional programming are found in Section C.
on Methods.
6
(c) Techniques for evaluating the effectiveness of transitional programming and
references on research deisgn and methodology are discussed in Section C. At this
point, however, it is important to refer to specific background experience of the p
proposed Research Director. In this project, unobtrusive measures of day-to-day
behavior wll beof great $ignificance where it is important to know what an individual
actually does on a daily basis as well as how well he can perform in a special test
situation. The behavioral ecology project at TIRR has developed a highly refiend
system for making such measures (
).
The proposed Research Director has had extensive experience on projects in the
behavioral ecohogy program and consequently has expertise in a research methodology
that will be of particular value for the proposed project.
(a) Structuring portions of the transitional program as self-contained units for
use outside their original context will in some respects be a task without direct
precedent. There are some useful parallels in currently-existing programs
of TIRR, however. These include the patient education program for in-patients,
a program of insturction entitled "Skills for Parents of Handicapped Children "
currently being developed as a joint effort of TIRR and
and the three-day Sexual Attitude Reassessment Workships regularly sponsored by
TIRR which are patterned on those developed at the University of Minnesota by Ted
Cole and his associates. Project personnel have had some relevant experience in
this area in working with residents of the Cooperative Living project to produce
an audio-visual exhibit on this program in cooperation with a professional medical
illustration department. Cooperative arrangements involving student projects can
be made with various resource organizations in the comunity with relevant expertise.
These include the University Without Walls and the Cummunications Department at the
University of Houston.
7
An additional area of prior experience will be of particular benefit in the
proposed trnasitional program. This is the association of project personnel with
the Cooperative Living residential program sponsored by TIRR. In the Cooperative
Living project a system for providing attendant assistance, meals, and transportation
on a shared basis was devised, alternative managerial structures were tested, operating
costs were monitored, and arrangements for coordinating multi-agency sources of
financial support were developed. Comparative information on similar areas is also
available in two residential projects in apartment clusters that developed as
outgrowths of the Cooperative Living project. Having this backgoound experience
will permit project personnel to establish a financiallysound basic residential program
with supportive servides for the proposed transitional project with a minimum of
planning and effort. This will free valuable time and energy for concentration on the
main tasks at hand, the development, evaluation, and packaging of a program of
transitional experience.
Rationale:
The proposed program is based on several underlying premises. Perhaps the
most basic is that the transitional programming must be flexible enough to respect
and value the individuality of participants. The general concepts of "independence"
and "integration into the community" must be considered in reference to speific indivi-
duals. In this framework, a C-2 spinal cord quadriplegic who learned the psychologycal
and interpersonal skills to manage his own environment would have gained a great deal
of independence in spite of his tbal d total dependence on others in physical func-
tioning.
A program iwth thes emphasis on ondividuality must be capable of planning for and
and accepting as "successful" a wide diversity of long-term outcomes. It must be
able to suggest to participants and prepare them for entering a continuum of living
8
situations rnaging from returning to a nursing home or family home prepared to
exercise greater phsycologocal autonomy to establishing an individual support a
arrangement in a private apartment or house, possibly with a mate. In this regard,
Houston provides a particularly appropriate setting for the transitional project b
because it has three apartment clusters with systems of shared supportive services
available to handicapped persons. The transitional program should also be geared
toward a wide range of education, vocational training, and employment options. A
diversity of opportunities for socialization is similarly important.
Houston has a large number of sesources which are valuable assets to a
transitional program It is important to recognize, however, that the program
shoudlnot follow too focus too closely on the particular set of options available
in this community, but rather should prepare individual to seek out and create oppor-
tunities in any context and to learn techniaues for ddapting to what may be available.
Another basic premise is the notion that participants should gradually assume
increasing responsiblities. The process of assuming responsibilities can begin
this process can begin on an individual's first day in the program when he sets intial
goals for himself and can continue throughout his participation in the program.
Such an arrangement segments stresses to that an individual does not have to succeed
at everything simultaneously, and it provides an atmosphere where mistakes or problems
are not disastrous failures but rather can be important elements in the adaptive
provess.
An additional premise is that peer modeling can be an extremely important
asset in a transitional experience, conveying both know-how and motivation to
participants. A number of active and independent handicapped individuals from the
community will be used as resource persons in the project.
9
Finally, an important goal of the project will be to design elements of the
trnasitional experience so that they can be useful beyond the specific context of
the program itself
INTERVIEWER
DATE
INTERVIEW #
TIRR SEXUALITY INTERVIEW
1. How old were you on your last birthday?
2. What is your current marital status?
DO NOT ASK Q's 3 and 4
3. Sex:
Female
Male
4. Race:
5. attending? What is the highest grade of school you have completed or are currently
6. Are you presently employed?
full-time
part-time
IF EMPLOYED, GO TO Q. 9
no
7. What is the source of your income?
8. What is the amount of your monthly income?
GO TO Q. 11
9. What is your current occupation?
10. In the past year, what was your average monthly income?
11. What is your religious preference?
Would you say you are:
Very religious
Moderately religious
Slightly religious
Not religious
12. When did your disability occur?
ENTER DATE
13. What is the level of your spinal cord injury?
14, Is your injury complete
or incomplete
15. What is your current level of sensation?
RECORD NARRATIVE
16. Do you have sensation anywhere below the level of injury?
PROBE GENITAL AREA ON MALE AND FEMALES IF NOT MENTIONED
LIST AREAS;
17. After your injury, were you ever told by health care professionals
that you could be sexually active, either by self-masturbation or
with a partner?
Yes
No
IF NO, GO TO Q. 21
18, active? How soon after your injury were you told that you could be sexually
19, Who told you that you could be sexually active?
ENTER THE PROFESSION
20, When would you have liked to have been told?
21, Would you have liked to discuss your sexuality with a professional
during your hospitalization?
yes
22, What would you have liked to discuss about your sexuality? no
YOUR NOW I SEXUAL AM GOING RELATIONS TO ASK SOME QUESTIONS
23. necking Prior to and your petting? injury, had you engaged in any PRIOR sexual TO YOUR activity INJURY ABOUT beyond
Yes
No
24, site Of these sex? sexual activities, how many involved IF NO, partners GO TO Q. of 32 the oppo-
All
Most
Half
Less than half
25. sexual Approximately relations how with? many partners of the None opposite sex did you have
IF NO SAME SEX RELATIONS, GO TO
26. tions Approximately with? how many partners of the Q.27 same sex did you have rela-
27. Of
partners, these how ENTER # OF PARTNERS BY TOTALLING LINES
you cared about many a great were deal) you emotionally ? involved with 25 & (i.e., 26 someone
28. relationship? With this/these partner (s), what do you feel you got out of the
RECORD NARRATIVE
29. What do you think your partner (s) got out of the relationship?
RECORD NARRATIVE
30. Where you ever married prior to your injury?
yes
no
31, How many times were you married?
32, Prior to your disability, had you had an orgasm (climax, come, a
heightened sense of pleasure that ends in a sudden drop-off) ?
yes
no
don't know
IF FEMALE, GO TO NARRATIVE INTRODUCTION
33, Prior to your disability, had you had an erection (hard-on, stiff
penis) ?
yes
no
don't know
34. Prior to your disability, had you had an ejaculation (shoot-off,
white fluid or semen coming from the penis) ?
yes
no
don't know
THAT NOW I AM GOING TO READ A LIST OF SEXUAL ACTIVITIES
FORE YOU TO TELL ME HOW OFTEN YOU ENGAGED IN IT BE-
WANT PEOPLE OFTEN ENGAGE IN. FOR EACH ACTIVITY, I
HERE YOUR INJURY AND HOW ENJOYABLE IT WAS FOR YOU.
IS A CARD LISTING POSSIBLE ANSWERS.
SPONDENT CARD YOU ARE TO TELL ME THE NUMBER
HAND RE-
WEEK", "USUALLY ENGAGE THE LETTER YOUR IN ENJOYABLE", SEXUAL OF REPLY YOUR INTERCOURSE WOULD ANSWERS. YOU BE ANSWER "2", "ONE FOR WOULD AND INSTANCE, TO IF TWO BE YOU TIMES FIND IF YOU THEN, A AND IT
I WANT YOU TO COMMENT ON ANY PROBLEMS ASSOCIATED "B".
A WITH THE ACTIVITY. IF NOT A PROBLEM NOW, BUT WAS
PROBLEM, PLEASE COMMENT ON HOW YOU SOLVED IT.
ACTIVITIES
FREQ ENJ.
COMMENTS
35. Self-masturbation
36, Masturbating your partner
37, Your partner masturbating
you
38. Intercourse
39, Mouth on partner's genitals
40, Partner's mouth on your
genitals
41, Performing anal intercourse
42. Receiving anal intercourse
43. Performing oral-anal contact
44. Receiving oral-anal contact
45, Using a vibrator on self
46, Using a vibrator on partner
47. Partner using a vibrator on
you
48. Using a penis substitute
(dildo)
49. Using any device to fit over
or around the penis to help
get it erect
50. Fantasy
DO YOU DAYDREAM ABOUT SEXUAL
ACTIVITY?
51. Orgasm in sleep (wet dream)
ABOUT YOUR SEXUAL RELATIONS SINCE YOUR INJURY.
NOW I AM GOING TO BE ASKING YOU SOME QUESTIONS
52, Since your injury, have you engaged in any sexual activity beyond
necking and petting?
yes
no
IF NO, GO TO Q. 118
53, Of these sexual activities how many involved partners of the opposite
sex?
All
Most
Half
Less than half
None
54, Approximately how many partners of the opposite sex have you had
sexual relations with?
IF NO SAME SEX RELATIONS, GO TO Q. 56
55, Approximately how many partners of the same sex have you had sexual
relations with?
56, Of these
TOTAL LINES 54 and 55
partners, how many have
you been emotionally involved with?
57, With this/these partner (s), what do you feel you got out of the
relationship?
RECORD NARRATIVE
58, What do you think your partner (s) got out of the relationship?
RECORD NARRATIVE
59 Have your partners been; other spinal-cord injured
non-SCI handicapped
other
able-bodied
health care
personnel (hospital, nursing home, etc,)
,
60, Were you married at the time of your injury?
yes
no
IF NO, GO TO Q. 64
61, Are you still married to the same person?
yes
no
IF YES, GO TO Q. 64
62, Have you re-married since your injury?
yes
no
63, What affect do you feel your injury had on your marriage?
64. Since your injury, has the importance of sex
increased
decreased
remained the same
65, Do you wear a urinary collecting device?
yes
no
GO TO Q. 68
66, What type of device?
67, What do you do with your urinary device prior to or during sexual
relations?
68, Do you require respiratory assistance for breathing?
yes
no
GO TO Q. 70
If yes, specify
69. How do you handle respiratory equipment when having sexual relations?
70, What kind of physical care do you
a, before having sexual relations? (For example, press on stomach
to empty bladder, use lubricating jelly, etc.)
b, during sexual relations?
C, after sexual relations?
71, Have you experienced dysreflexia? (elevated blood pressure, headache,
sweating, flushing, shortness of breath)
Yes
No
GO TO Q.74
72, How often do you have dysreflexia during sexual relations?
Always
More than half of the time
About half of the time
Less than half of the time
Never
73. What do you do about dysreflexia during sexual relations?
74, What areas of your body feel most pleasurable during sexual arousal?
75, How often do you experience any type of discomfort during sexual
activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
GO TO Q. 77
76, Describe what kind of discomfort and where it is,
77, Do you use contraceptive methods?
Yes
No
If yes, specify
78, In what places do you have sexual relations?
READ CATEGORIES
Regular bed
Sofa
In wheelchair
Car
Floor
Chair (regular)
Waterbed
Other (specify)
Which is most enjoyable?
79, What position do you find most satisfying for sexual relations?
Being on top
Side by side
Partner on top
Other (explain)
80. Do physical limitations determine your position preference?
yes
no
81, Who usually initiates sexual activity?
you
partner
82. How long do you usually spend in sexual activity in any one setting?
EXCLUDE PREPARATION PRIOR TO AND AFTER SEXUAL ACTIVITY
Specify
HOURS AND MINUTES
83, What is it that marks the completion of sexual activity; that is,
how do you know when it is over?
IF RESPONDENT SAYS "ORGASM" - ASK WHO HAS THE ORGASM
IF FEMALE, GO TO Q. 85
84, How often do you have erections during sexual activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
85, How often do you have orgasms during sexual activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
86, Is there one special sexual technique that is most successful in
helping you achieve an erection?
yes
no
If yes, specify
87. When did you first experience
orgasm
erection following
your injury?
PROBE FOR NATURE OF RELATIONSHIP WITH PARTNER; SEXUAL TECHNIQUES
Orgasm:
Erection:
88. Are your orgasms the same as, or different from, before your injury?
Same
GO TO Q. 90
Different
89. How ,are your orgasms different now?
IF FEMALE, GO TO Q. 91
90, How often have you ejaculated during sexual activity since your
disability?
Always
More than half of the time
About half of the time
Less than half of the time
Never
91, Have you conceived a child since your disability?
yes
no
If yes, was it conceived by sexual intercourse or by artificial
insemination?
IF MALE, GO TO Q. 93
92, How soon after you were injured did your menses resume and were
there any noticeable changes in your period cycle?
93, How soon after you were injured did you first attempt sexual activity
and could you describe for me the first attempt?
94. How long has it been since your last sexual relationship?
95, Since your injury, have your sexual experiences been mostly favorable
or disappointing?
Favorable
Disappointing
PROBE, HOW AND WHY FAVORABLE AND/OR DISAPPOINTING?
96. What kinds of changes have you had to make in your sexual life since
your injury?
RECORD NARRATIVE
97. Have you had trouble with any of the following?
Vaginitis
yes
no
Urethritis
yes
no
Bladder infections
yes
no
Did you or your doctor think it was related to sexual activity?
yes
no
IF YES, SPECIFY WHICH WAS THOUGHT TO BE RELATED TO SEXUAL
ACTIVITY,
98. How often does sexual activity cause and/or increase muscle spasms?
Always
More than half of the time
About half of the time
Less than half of the time
Never
GO TO Q. 101
99, Are they helpful or are they a problem during sexual activity?
Helpful
Problem
SPECIFY HOW
100. What do you do when spasms occur?
101. How often have you had a bladder accident during sexual activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
102, How often have you had a bowel accident during sexual activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
IF "NEVER" TO BOTH Q's 101 and 102, GO TO INTRODUCTION
103. What do you do to try to prevent these accidents?
NOW I AM GOING TO READ THE SAME LIST OF
SEXUAL ACTIVITIES THAT I READ EARLIER.
FOR EACH ACTIVITY, I WANT YOU TO TELL ME
HOW OFTEN YOU HAVE ENGAGED IN IT SINCE
YOUR INJURY AND HOW ENJOYABLE IT IS FOR
YOU. YOU ARE TO USE THE SAME RESPONSE
CARD. I WOULD LIKE FOR YOU TO ALSO COM-
MENT ON WHY YOU DO OR DO NOT ENGAGE IN
CERTAIN ACTIVITIES.
ACTIVITIES
FREQ ENJ.
COMMENTS
104, Self-masturbation
105, Masturbating your partner
106, Your partner masturbating
you
107, Intercourse
108, Mouth on partner's genitals
109, Partner's mouth on your
genitals
110. Performing anal intercourse
111. Receiving anal intercourse
112. Performing oral-anal contact
113. Receiving oral-anal contact
114. Using a vibrator on self
115. Using a vibrator on partner
116, Partner using a vibrator on
you
117. Using a penis substitute
(dildo)
118. Using any device to fit over
or around the penis to help
get it erect
119, Fantasy
ACTIVITY? DO YOU DAYDREAM ABOUT SEXUAL
120, Orgasm in sleep (wet dream)
121. Are you currently as sexually active as you would like?
Yes
GO TO Q. 124
No
122. Why aren't you sexually active or as sexually active as you would
like to be?
a. religious or moral reasons
b. lack of contacts or partners
C, lack of privacy
d, lack of money
e. my lack of sexual interest
f. my partner's lack of sexual interest
g. my lack of information
IF CHECKED, ASK "WHAT TYPE OF INFORMATION"
h, my partner's lack of information
IF CHECKED, ASK "WHAT TYPE OF INFORMATION"
i. my fear
IF CHECKED, ASK "FEAR OF WHAT"
j. my partner's fear
IF CHECKED, ASK "FEAR OF WHAT"
k. problem with erections
1. physical difficulty in carrying out sex acts
m, I am not sexually desirable
n. I don't like my body
O, SCI-related physical problems (infections, contractures,
pain, spasticity, urinary, bowel or skin problems, etc.)
p. non-SCI related physical problems
q. I am too young
r. I am too old
S, other (specify)
123, Write in the letter of the single most important reason of those
listed above.
124. If you have any suggestions or comments you would like to share,
either personal or about the questionnaire, please do so:
INTERVIEWER
INTERVIEW #
DATE:
A. How injured;
B. Previous Surgeries:
C. Number of Hospitalizations:
D, When recorded:
During hospitalization
R&F
SC Clinic
Follow-up
E. Did patient attend Sex and Coffee? Yes
No
F. Did patient participate in SAR Workshop?
Yes
No
G. Where is patient currently living?
H. With whom is patient living?
INTERVIEWER
DATE
INTERVIEW #
TIRR SEXUALITY INTERVIEW
1. How old were you on your last birthday?
2. What is your current marital status?
DO NOT ASK Q's 3 and 4
3. Sex:
Female
Male
4. Race:
5. attending? What is the highest grade of school you have completed or are currently
6. Are you presently employed?
full-time
part-time
IF EMPLOYED, GO TO Q. 9
no
7. What is the source of your income?
8. What is the amount of your monthly income?
GO TO Q. 11
9, What is your current occupation?
10. In the past year, what was your average monthly income?
11. What is your religious preference?
Would you say you are:
Very religious
Moderately religious
Slightly religious
Not religious
12. When did your disability occur?
ENTER DATE
13. What is the level of your spinal cord injury?
14. Is your injury complete
or incomplete
15. What is your current level of sensation?
RECORD NARRATIVE
16. PROBE Do you have sensation anywhere below the level of injury?
GENITAL AREA ON MALE AND FEMALES IF NOT MENTIONED
LIST AREAS
17. After that your injury, were you ever told by health care
with you could be sexually active, either by self-masturbation professionals or
a partner?
Yes
No
IF NO, GO TO Q. 21
18, active? How soon after your injury were you told that you could be sexually
19, Who told you that you could be sexually active?
ENTER THE PROFESSION
20, When would you have liked to have been told?
21, during Would you have liked to discuss your sexuality with a professional
your hospitalization?
22. What would you have liked to discuss yes about your sexuality? no
YOUR NOW I SEXUAL AM GOING TO ASK SOME
23. necking Prior to and your petting? injury, had you engaged in any sexual TO YOUR activity INJURY beyond
RELATIONS PRIOR QUESTIONS ABOUT
Yes
No
24, site Of these sex? sexual activities, how many involved IF NO, partners GO TO Q. of 32 the oppo-
All
Most
Half
Less than half
25. sexual Approximately relations how with? many partners of the None opposite sex did you have
IF NO SAME SEX RELATIONS, GO TO
26. tions Approximately with? how many partners of the 0.27 same sex did you have rela-
27. partners, Of these ENTER IF OF PARTNERS BY TOTALLING LINES
you cared about how many a great were deal) you emotionally ? involved with 25 & (i.e., 26 someone
28. relationship? With this/these partner (s), what do you feel you got out of the
RECORD NARRATIVE
29. What do you think your partner (s) got out of the relationship?
RECORD NARRATIVE
30. Where you ever married prior to your injury?
yes
no
31, How many times were you married?
32, Prior to your disability, had you had an orgasm (climax, come, a
heightened sense of pleasure that ends in a sudden drop-off) ?
yes
no
don't know
IF FEMALE, GO TO NARRATIVE INTRODUCTION
33, Prior to your disability, had you had an erection (hard-on, stiff
penis) ?
yes
no
don't know
34. Prior to your disability, had you had an ejaculation (shoot-off,
white fluid or semen coming from the penis) ?
yes
no
don't know
NOW I AM GOING TO READ A LIST OF SEXUAL ACTIVITIES
WANT YOU TO TELL ME HOW OFTEN YOU ENGAGED IN IT BE-
THAT PEOPLE OFTEN ENGAGE IN. FOR EACH ACTIVITY, I
FORE YOUR INJURY AND HOW ENJOYABLE IT WAS FOR YOU.
HERE IS A CARD LISTING POSSIBLE ANSWERS. HAND
SPONDENT CARD YOU ARE TO TELL ME THE NUMBER AND
RE-
THE LETTER OF YOUR ANSWERS. FOR INSTANCE, IF YOU
ENGAGE IN SEXUAL INTERCOURSE "ONE TO TWO TIMES A
WEEK", YOUR REPLY WOULD BE "2", AND IF YOU FIND
I "USUALLY ENJOYABLE", YOU ANSWER WOULD BE "B". THEN, IT
WANT YOU TO COMMENT ON ANY PROBLEMS ASSOCIATED
A WITH THE ACTIVITY. IF NOT A PROBLEM NOW, BUT WAS
PROBLEM, PLEASE COMMENT ON HOW YOU SOLVED IT.
ACTIVITIES
FREQ ENJ.
COMMENTS
35. Self-masturbation
36. Masturbating your partner
37, Your partner masturbating
you
38. Intercourse
39, Mouth on partner's genitals
40, Partner's mouth on your
genitals
41, Performing anal intercourse
42. Receiving anal intercourse
43. Performing oral-anal contact
44. Receiving oral-anal contact
45. Using a vibrator on self
46, Using a vibrator on partner
47. Partner using a vibrator on
you
48. Using a penis substitute
(dildo)
49. Using any device to fit over
or around the penis to help
get it erect
50. Fantasy
DO YOU DAYDREAM ABOUT SEXUAL
ACTIVITY?
51, Orgasm in sleep (wet dream)
NOW I AM GOING TO BE ASKING YOU SOME QUESTIONS
ABOUT YOUR SEXUAL RELATIONS\ SINCE YOUR INJURY.
52, Since your injury, have you engaged in any sexual activity beyond
necking and petting?
yes
no
IF NO, GO TO Q. 118
53, Of these sexual activities how many involved partners of the opposite
sex?
All
Most
Half
Less than half
None
54, Approximately how many partners of the opposite sex have you had
sexual relations with?
IF NO SAME SEX RELATIONS, GO TO Q. 56
55, Approximately how many partners of the same sex have you had sexual
relations with?
56, Of these
TOTAL LINES 54 and 55
partners, how many have
you been emotionally involved with?
57, With this/these partner (s), what do you feel you got out of the
relationship?
RECORD NARRATIVE
58, What do you think your partner (s) got out of the relationship?
RECORD NARRATIVE
5.9, Have your partners been; other spinal-cord injured
other
non-SCI handicapped
able-bodied
health care
personnel (hospital, nursing home, etc,)
60, Were you married at the time of your injury?
yes
no
IF NO, GO TO Q, 64
61, Are you still married to the same person?
yes
no
IF YES, GO TO Q. 64
62, Have you re-married since your injury?
yes
no
63, What affect do you feel your injury had on your marriage?
64, Since your injury, has the importance of sex
increased
decreased
remained the same
65, Do you wear a urinary collecting device?
yes
no
GO TO Q, 68
66. What type of device?
67, What do you do with your urinary device prior to or during sexual
relations?
68, Do you require respiratory assistance for breathing?
yes
no
GO TO Q. 70
If yes, specify
69. How do you handle respiratory equipment when having sexual relations?
70, What kind of physical care do you
a, before having sexual relations? (For example, press on stomach
to empty bladder, use lubricating jelly, etc,)
b, during sexual relations?
C, after sexual relations?
7.1, Have you experienced dysreflexia? (elevated blood pressure, headache,
sweating, flushing, shortness of breath)
Yes
No
GO TO Q.74
72, How often do you have dysreflexia during sexual relations?
Always
More than half of the time
About half of the time
Less than half of the time
Never
73. What do you do about dysreflexia during sexual relations?
74, What areas of your body feel most pleasurable during sexual arousal?
75, How often do you experience any type of discomfort during sexual
activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
GO TO Q. 77
76. Describe what kind of discomfort and where it is,
77, Do you use contraceptive methods?
Yes
No
If yes, specify
78, In what places do you have sexual relations?
READ CATEGORIES
Regular bed
Sofa
In wheelchair
Car
Floor
Chair (regular)
Waterbed
Other (specify)
Which is most enjoyable?
79, What position do you find most satisfying for sexual relations?
Being on top
Side by side
Partner on top
Other (explain)
80. Do physical limitations determine your position preference?
yes
no
81, Who usually initiates sexual activity?
you
partner
82. How long do you usually spend in sexual activity in any one setting?
EXCLUDE PREPARATION PRIOR TO AND AFTER SEXUAL ACTIVITY
Specify
HOURS AND MINUTES
83. What is it that marks the completion of sexual activity; that is,
how do you know when it is over?
IF RESPONDENT SAYS "ORGASM" - ASK WHO HAS THE ORGASM
IF FEMALE, GO TO Q. 85
84, How often do you have erections during sexual activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
85, How often do you have orgasms during sexual activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
86, Is there one special sexual technique that is most successful in
helping you achieve an erection?
yes
no
If yes, specify
87., When did you first experience
orgasm
erection following
your injury?
PROBE FOR NATURE OF RELATIONSHIP WITH PARTNER; SEXUAL TECHNIQUES
Orgasm:
Erection:
88. Are your orgasms the same as, or different from, before your injury?
Same
GO TO Q. 90
Different
89. How are your orgasms different now?
IF FEMALE, GO TO Q. 91
90, How often have you ejaculated during sexual activity since your
disability?
Always
More than half of the time
About half of the time
Less than half of the time
Never
91, Have you conceived a child since your disability?
yes
no
If yes, was it conceived by sexual intercourse or by artificial
insemination?
IF MALE, GO TO Q. 93
92, How soon after you were injured did your menses resume and were
there any noticeable changes in your period cycle?
93 How soon after you were injured did you first attempt sexual activity
and could you describe for me the first attempt?
94. How long has it been since your last sexual relationship?
95, Since your injury, have your sexual experiences been mostly favorable
or disappointing?
Favorable
Disappointing
PROBE: HOW AND WHY FAVORABLE AND/OR DISAPPOINTING?
96, What kinds of changes have you had to make in your sexual life since
your injury?
RECORD NARRATIVE
97. Have you had trouble with any of the following?
Vaginitis
yes
no
Urethritis
yes
no
Bladder infections
yes
no
Did you or your doctor think it was related to sexual activity?
yes
no
IF YES, SPECIFY WHICH WAS THOUGHT TO BE RELATED TO SEXUAL
ACTIVITY,
98, How often does sexual activity cause and/or increase muscle spasms?
Always
More than half of the time
About half of the time
Less than half of the time
Never
GO TO Q. 101
99, Are they helpful or are they a problem during sexual activity?
Helpful
Problem
SPECIFY HOW
100. What do you do when spasms occur?
101, How often have you had a bladder accident during sexual activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
102, How often have you had a bowel accident during sexual activity?
Always
More than half of the time
About half of the time
Less than half of the time
Never
IF "NEVER" TO BOTH Q's 101 and 102, GO TO INTRODUCTION
103. What do you do to try to prevent these accidents?
NOW I AM GOING TO READ THE SAME LIST OF
SEXUAL ACTIVITIES THAT I READ EARLIER.
FOR EACH ACTIVITY, I WANT YOU TO TELL ME
HOW OFTEN YOU HAVE ENGAGED IN IT SINCE
YOUR INJURY AND HOW ENJOYABLE IT IS FOR
YOU. YOU ARE TO USE THE SAME RESPONSE
CARD. I WOULD LIKE FOR YOU TO ALSO COM-
MENT ON WHY YOU DO OR DO NOT ENGAGE IN
CERTAIN ACTIVITIES.
ACTIVITIES
FREQ ENJ.
COMMENTS
104, Self-masturbation
105, Masturbating your partner
106; Your partner masturbating
you
107, Intercourse
108, Mouth on partner's genitals
109, Partner's mouth on your
genitals
110. Performing anal intercourse
111. Receiving anal intercourse
112. Performing oral-anal contact
113. Receiving oral-anal contact
114. Using a vibrator on self
115. Using a vibrator on partner
116, Partner using a vibrator on
you
117. Using a penis substitute
(dildo)
118. Using any device to fit over
or around the penis to help
get it erect
119, Fantasy
ACTIVITY? DO YOU DAYDREAM ABOUT SEXUAL
120, Orgasm in sleep (wet dream)
121. Are you currently as sexually active as you would like?
Yes
GO TO Q. 124
No
122. Why aren't you sexually active or as sexually active as you would
like to be?
a. religious or moral reasons
b. lack of contacts or partners
C, lack of privacy
d, lack of money
e. my lack of sexual interest
f. my partner's lack of sexual interest
g. my lack of information
IF CHECKED, ASK "WHAT TYPE OF INFORMATION"
h, my partner's lack of information
IF CHECKED, ASK "WHAT TYPE OF INFORMATION"
i. my fear
IF CHECKED, ASK "FEAR OF WHAT"
j. my partner's fear
IF CHECKED, ASK "FEAR OF WHAT"
k, problem with erections
1, physical difficulty in carrying out sex acts
m, I am not sexually desirable
n. I don't like my body
O, SCI-related physical problems (infections, contractures,
pain, spasticity, urinary, bowel or skin problems, etc.)
p. non-SCI related physical problems
q. I am too young
r. I am too old
S. other (specify)
123, Write in the letter of the single most important reason of those
listed above.
124. If you have any suggestions or comments you would like to share,
either personal or about the questionnaire, please do SO:
DRAFT-00 Not Reproduce
MEDICAL ASPECTS OF DISABILITY
WITH A VIEW TO INDEPENDENT LIVING
September, 1975
Sheldon Berrol, M.D.
Edna Brean, R.N.
INTRODUCTION
Great strides are presently being made in the acute management of the
severely disabled patient as a result of the development of regional centers
for treatment of catastrophic illness. Unfortunately, the level of long term
medical management has not as yet kept pace with this progress, due in no small
part to the attitude of governmental and insurance organizations which are ap-
parently only now on the verge of recognizing that adequate health maintenance
can be equated with fiscal responsibility.
The team approach to the severely disabled involves not only the medical
community and its recognized paramedical specialists, but must also include the
rehabilitation counselor, the peer counselor, and when neccessary the consumer
advocate. The goal of this concerted effort should ultimately be independent
living. In this context, independent living is more than living at home or in
a sheltered workshop. It encompasses an active participation in the social
process, being a head of household, and finding meaningful work which may or
may not be remunerative. The role of health maintenance in this process re-
volves around freedom from egocentric body needs. This can only be achieved
by indoctrinating sound principles of preventive health care in the daily
routines of the disabled.
Our intent here is not to provide a detailed description of basic rehab-
ilitation programs, but rather to give a brief overview of issues arbitrarily
selected by the authors - issues that interfere with the maintenance of an in-
dependent life style. We have essentially avoided surgical approaches to prob-
lems, except for a few selective instances. Some of our approaches may be con-
troversial, but they represent the summation of successful experiences.
ROUTINE HEALTH MAINTENANCE
The decrease in mortality rate amongst the severely neurologically disabled
appears to parallel the adequate medical follow-up, the hallmark of which remains
the annual physical exam. Most patients who live within reasonable geographic
proximity of the rehabilitation center can generally have their evaluation per-
formed as an outpatient. The patient who lives at some distance can usually
have the full evaluation accomplished within two to three days.
A reasonably comprehensive evaluation should include intravenouspyelography (IVP)
(or a renal scan in the case of dye sensitivity) CBC, panel chemistries (which
include a BUN), and serum creatinine. Pulmonary function studies should be in-
cluded in quadriplegics, or when involvement of the thoracic musculature is
present to any significant degree. In children with SCI, polio, myelomenigocele,
muscular dystrophy, etc., evaluation of the spine for progressive scoliosis must
be performed, and after capping of the iliac crests, on an elective basis. Urine
cultures and sensitivities should be performed annually, but the method of ob-
taining the specimen should preferably be by Suprapubic Aspirate. If this can-
not be accomplished, direct catheterization would be the next most reliable
method. In no instance would obtaining a specimen from the indwelling catheter,
or from a leg bag be acceptable. If a change in residual capacity, or in blad-
der spasticity is suspected by history, a cystometrogram or air cystometry should
be performed.
A full physical examination including a re-evaluation of neurologic function
and disability must be performed, and establishment of potentially new rehabili-
tation goals considered annually.
BLADDER
The most significant advance in the care of the urinary tract in pa-
tients with a neurogenic bladder has been the introduction of the inter-
mittent catheterization program. If the patient has been fortunate enough
to have had the program instituted early in the acute rehabilitation phase,
then his urine may remain consistently sterile. Even if the injury or dis-
ease process has been longstanding, the success rate in preventing urinary
tract complications is outstanding. An adequate evaluation of bladder func-
tion, i.e. the type of neurogenic bladder, must be done in order to properly
determine the need for concomittant drug therapy. In the case of the small,
spastic bladder, banthine is frequently of value in relaxation of the de-
trusor muscle of the bladder. In the flaccid bladder, bethanechol will in-
crease bladder tone and produce more effective emptying.
The Crede prodedure should be taught the patient with the Lower Motor
Neuron bladder, and reflex stimulating procedures to the patient with an
Upper Motor Neuron bladder. Careful attention should be directed to bladder
residuals with a maximum of 20% for UMN bladders and 10% for LMN bladders.
Tidal drainage is mentioned as a procedure to be avoided.
In patients with high outflow resistance, a sphincterotomy is a simple
procedure which usually results in elimination of the catheter. The male
patient with an indwelling catheter is an anachronism at this point in time,
with the exception of its temporary use in the case of ureteral reflux.
The female patient with her short urethra is, however, frequently treated
by indwelling catheter. "Padding up" may be an acceptable technique for a
small minority of women and is not without hazard to skin. The selective use
of the artificial sphincter in appropriate cases appears to be & major advance
in bladder control.
2
BLADDER
Overdistention of the bladder must be avoided. Prophylactic anti-
biotic therapy appears to be an unwarranted approach in the avoidance of ur-
inary tract infection. Recent studies suggest that the upper urinary tract
is resistant to pseudomonas and, in the absence of symptoms, treatment on
the basis of cultures alone is not necessary. Monitoring of pH of the ur-
ine should be taught to the patient and/or attendant, and appropriate acid-
ification accomplished by dietary intake or supplemental ascorbic acid.
One must remain constantly alert to the possibility of bladder neo-
plasm, the incidence of which is significantly higher in the patient with
the indwelling catheter.
SPASTICITY
The presence of spasticity is not an indication for its control. The
patient with upper motor neuron spasticity should be adequately evaluated
to determine if his functional capabilities could indeed be increased by
proper utilization of spasticity.
Spasticity usually represents a loss of cortical inhibition, which may
be modified by several modalities with varying success. In the physical
therapy gym, local application of ice usually decreased spasticity long enough
to range a joint, but the effects have been obtained by hypnosis, but results
are rarely effective beyond two weeks. Acupuncture has achieved a degree of
folk popularity, but clear cut clinical trials in spasticity as yet are not
available.
Conservative treatment remains the pharmacologic approach. Diazepam
has for many years been the mainstay of drug control, but not without hazard.
A frequent problem is the accompanying lethargy, and altered reaction time
by virtue of its central nervous system effects. It maintains a distinct
addictive capability and may induce withdrawal seizure activity. Therefore
any patient who has been on Diazepam, particularly in large doses, should be
gradually tapered whenever the drug is withdrawn.
Dantrolene has been a major advance in drug control of spasticity in
that the primary site of action is in the effector organ - the muscle fiber.
It too must be carefully administered, with the dose slowly increased to max-
im: effect in order to minimize sedation and gastrointestinal effects. Liv-
en function studies must be closely monitored, for toxic effects are not un-
commonly encountered.
The class of drugs generally considered "muscle relaxants" are essentially
valueless in upper motor neuron spasticity.
Motor point blocks with phenol or alcohol can be most effective when spas-
ticity can be isolated to a few major muscle groups.
2
SPASTICITY
Ablative surgical procedures for spasticity will not be considered here.
CONTRACEPTION
The sexual revolution has created a new wave of societal mores and with
it has evolved an awareness that the disabled too are sexual beings. The
psychological aspects of sexuality will not be discussed, but in considering
medical management, concern must be expressed for effective birth control
methods.
The severely disabled male may continue to use pre-morbid forms of birth
control (if disability is due to injury) such as condoms (which may be an
advantage if leakage of urine occurs) or continue to rely on his partner.
The vasectomy is a simple and effective method of contraception that has
gained a great deal of apparently well deserved attention and is applicable
to most disabled men.
The woman appears to have greater problems. If the disability confines
her to a wheelchair, then a sizable amount of venous stasis will occur in
the lower extremities. If she does not have a regular routine of standing,
be it a standing frame, braces, etc., then the incidence of acute inflamma-
tion of veins of the leg may be increased if she uses oral contraceptive hor-
mones. We know of no studies that take into consideration pre-existing ven-
ous stasis and its relation to thrombophlebitis when taking oral contracep-
tives. The IUD (intra-uterine device) may be preferable in selected cases
of disabled women. A great deal of mythology has evolved regarding these
devices, and there have been some serious problems. There appears to be no
greater danger of uterine perforation in disabled women. Indeed, such ser-
ious side effects are markedly decreased when insertion is accomplished by
proficient physicians. The device may be expelled by the uterus and many
women cannot use the device because of dysmenorrhea or menorrhagia. Where
a monogamus relationship exists with a desire to avoid progeny, the male
2
CONTRACEPTION
paitner should consider vasectomy.
There is no one single method that is most desirable. The basic
desirability and functional status of the individual must be considered
in selecting an appropriate safe method of contraception.
PREGNANCY
Some degree of controversy has existed in rehabilitation centers regard-
ing the most appropriate site for delivery of the neuologically disordered
woman. There is no question that adequate and comprehensive obstetrical care
can be delivered in the general hospital setting, provided consideration of
the special needs of the patient are met. Far too many of these women, whether
SCI, polio, or myelomeningocele, are offered caesarian section rather than vag-
inal delivery because of unnecessary anxiety on the part of the obstetrician.
The indications for surgical approaches are the same as for able bodied women.
A major concern must be in the prevention of pressure sores during delivery.
The pain insensitive woman must not remain in the lithotomy position for periods
longer than two hours. Indeed, she should not be brought to the obstetrical am-
phitheater until delivery is imminent in order to avoid prolonged and unnecess-
ary pressures over bony prominences. Stirrup cuffs should also be sufficiently
loose so as to avoid excessive pressure. A 2" foam pillow (or preferably gel)
should be placed under the buttocks.
As with the abled bodied woman, anesthesia should be held to a minimum, but
the pain insensitive patient may be fortunate enough to be able to avoid any anes-
thetic.
Autonomic dysreflexia has occasionally been reported during delivery, and
continual observation is essential. Close monitoring of bladder and bowel must
be maintained.
If excessive spasticity is a problem, Diazepam may be administered I.V.
keeping in mind its potential depressant effects on the fetus.
The mother and child should not be denied the pleasures and advantages in-
herent in breast feeding merely because of the mother's disability. Moreover,
the convenience of breast feeding for the mother should not be underestimated
when compared to the burdensome aspects of preparing sterile formula.
PULMONARY PROBLEMS
Sleeping problems are frequently encountered in patients with pulmonary
insufficiency secondary to neuromuscular disorders. The administration of
sedatives or soporifics compounds the problem by further depressing respiration.
Frequent evaluation of pulmonary function has been mentioned, but must be
emphasized at this point. Significant abnormalities should signal the need for
blood gas studies. All patients with decreased pulmonary function and their
attendants, and/or family should be taught postural drainage, chest mobilization
techniques and the essentials of good bronchial toilet. Breathing excercises
should be taught at the rehabilitation center, and daily use encouraged by profess-
ionals involved in long term management. Those patients who are high quadriplegics
should learn glossopharyngeal breathing. In the presence of upper respiratory
infections, antibiotics should be utilized when necessary, and all measures for
reducing the viscosity of sputum should be encouraged early such as increasing
fluid intake and the adequate use of expectorants. Steam inhalation is frequently
of value. Antihistamines which may thicken secretions should be avoided in
pulmonary problems.
FRACTURES
The osteoporosis which results from the loss of axial loading and re-
sultant loss of stresses of muscle pull predispose the neurologically de-
prived patient to long bone fractures. An adequate maintenance program
ahould reasonably include some method of obtaining an upright position to
retard this process. The concept of weight bearing must be appreciated for
its beneficial effect on calcium metabolism, urinary drainage, bowel function,
prevention of bladder calculi, prevention of circulatory stasis, and mainten-
ance of muscle tone.
Treatment of long bone fractures must be approached conservatively. Os-
teomyelitis is a major hazard to open repair. Bracing is generally not advis-
able in lesions above T-10. Mobilization should be delayed until adequate
healing is demonstrated radiographically. If ambulation is not a factor, non-
union may be tolerated.
In fractures of the lower extremities, positioning should be maintained
by pillow splints, and casts svoided. If a cast must be applied, then it
should be bivalved to avoid excessive pressure, and carefully observed dur-
ing the period of immobilization.
The possibility of spontaneous fracture must be kept in mind in patients
with extensor spasticity.
Heterotopic ossification may occur as early as 1 month or as late as 12
months after injury. It is often confused with acute thrombophlebitis when
it occurs unilaterally, and accurate differential diagnosis must be made to
avoid incorrect treatment. It has not uncommonly been confused with sarcoma
when evaluated by x-ray alone. Alkaline phosphatase elevations preceed radio-
graphic findings, and should always be determined serially when heterotopic
2
FRACTURES
ossification is suspected. When severe enough to cause limitation of func-
tion, correct timing for possible surgical intervention should be establ shed
using serial radio isotope uptake ratios. The presence of heterotopic ossi-
fication is not a contra-indication for passive range of motion, but an indic-
ation
AUTONOMIC DYSREFLEXIA
The one true medical emergency in long term management of the spinal cord
injured patient is autonomic dysreflexia (hyperreflexia). It is found in patients
with spinal cord lesions above the level of the fifth thoracic vertebra. The
stimulus may be a distended or spastic bladder, a stool impacted rectum or a locus
of irritation in the skin. This stimulus initiates reflex activation of the
sympathetic and parasympathetic nervous systems, which if not controlled,
can precipitate a cerebral vascular accident and even death.
The patient complains of a pounding headache, nasal stuffiness, sweating of
the face, and "goose bumps". He is excessively apprehensive, and demonstrates
a bradycardia in the presence of a severe hypertension which may reach levels
as high as 300/160.
The patient should immediately be placed in an upright position, to
facilitate the pooling of blood by gravity in the lower extremities and abdomen.
The bladder should be drained, and if the catheter is found to be plugged, it
is irrigated gently with no more than 30 cc of solution. The rectum should be
checked for a fecal mass. If present, a topical anesthetic ointment should be
instilled to decrease the stimulus, and after symptoms have subsided, the feces
removed. If the blood pressure does not decline immediately, parenteral drug
therapy should be initiated, such as I.V. Diazepam, followed by a ganglionic
blocking agent such as Regitine 5 mg. I.M. if the former is not rapidly
effective.
SKIN CARE
The single most costly complication of the severely disabled remains the
pressure sore. The tendency to legitimize this major effect of negligence
by applying the title Decubitus Ulcer should be discouraged. The patient will
be better served to acknowledge (as will the physician and nurse) that this
is indeed a sore resulting from prolonged pressure.
The two major events contributing to its occurrence are prolonged pres-
sure, and shear forces that produce excessive friction. Prevention demands
frequent relief of pressure, requiring turning every two hours while in bed.
The patient must be indoctrinated with the importance of elevation in the
wheelchair every 20 to 30 minutes. The skin may frequently be damaged by
trauma from friction that occurs during transfers. The current availability
of pre-washed jeans has apparently eliminated the firm abrasive seams that
caused problems in the past. Bedsheets must be kept dry and free of wrinkles.
A host of predisposing factors facilitate the development of pressure
sores and general measures for their correction should be instituted. The
patients perineal area must be kept dry and free from maceration. An adequate
diet must be maintained, and in the presence of skin breakdown, the caloric
intake should be increased above the normal levels, and maintained at about
3000 calories a day. Americans generally take vitamins in frighteningly ex-
cessive quantities, and the disabled are no exception, but the case for high
doses (2-3 Gm. daily) of ascorbic acid appears to have been clearly established
in the promotion of healing. The correction of anemia is a sine qua none in
ulcer care.
Any reddened area occuring over a boney prominence that does not blanch
with simple pressure must be considered a pressure sore, even without skin
breakdown. The immediate care demands removal of all pressure, and the assump-
tion of the prone position, alternating with side lying. Water beds have been
2
SKIN CARE
much in vogue to reduce pressure. Strong consideration must be given how-
ever, to the loss of independent function incurred by the physically dis-
abled on this soft bedding. Additionally, the plastic cover may contribute
to undue maceration of skin and further compound the problem. The use of the
partially water filled air mattress is a far less expensive and more portable
means of pressure relief that enables the patient to utilize leverage for full
bed independence. Additionally, the vertigo frequently encountered with water
beds is eliminated.
Local care of the wound demands adequate aeration. This means the total
avoidance of any occlusive medication such as antibiotic ointments, zinc oxide
paste, and tincture of benzoin. The use of the latter as a skin toughener is
totally without merit.
A simple but effective regime employs half strength hydrogen peroxide
wash, followed by the application of povidone-iodine solution, every 4 hours.
Deep ulcers frequently require packing with the latter.
The use of karaya powder alone or mixed with povidone-iodine has been
of value in infected ulcers in some institutions, and the use of oral zinc
therapy is felt to be of occasional value.
Patients must be motivated by the professionals to avoid the develop-
ment of pressure sores, and it is our responsibility to insure that they
are fully indoctrinated with these caveats.
BOWEL CARE
Although the principles of good bowel care and function are acquired and
the client was laxative free before injury, (s)he often has difficulties in
this area with the commonest complaint being slow response to suppository.
Increased attention to bulk content of the diet is helpful with supplementary
metamucil as needed. Enemas should be avoided and the use of glycerine or
biscodyl suppositories followed by massage of the abdomen about 20 minutes
later in a clockwise direction is beneficial. An attempt should be made to
wean the patient from suppositories. Use of a commode chair is recommended to
approximate the normal flexed or squatting position. The bowel program should
take place at regular and specific hours (generally 1/2 to 1 hour after a meal
to take advantage of the gastrocolic reflex), every other day, or twice weekly.
In an upper motor neuron disorder mere introduction of a gloved, well lubricated
finger into the rectum with a circular motion may set off reflex bowel evacua-
tion as well as reflex bladder emptying. Simple stretching of the anal sphinc-
ter can cause satisfactory peristaltic 'rushes' with evacuation in some people.
In the rare instance when an enema becomes necessary, small amounts of fluid
should be used, and the practice of securing the catheter in the rectum by means
of an inflated foley bag should be condemned as intestinal rupture with subse-
quent serious complications is all too common, due to the inability of the in-
testine to expel the balloon in a peristaltic rush. In an enema, the catheter
should only be inserted past the external sphincter and the fluid held no
higher than 18 inches. Because of the need to maintain enema-free bowel bal-
ance, laxatives and enemas should not be ordered before IVPs and only before
major surgery. Diarrhea caused by dietary indescretions is usually self lim-
iting within 4-6 hours. Useful in controlling diarrhea are lomotil, or bismuth
and paregoric for 2 to 4 doses. Hemorrhoids can cause bouts of autonomic dys-
reflexion and should be looked for. Often they can be treated by anusol sup-
positories, careful attention to diet, and temporary discontinuance of digital
2
BOWEL CARE
evacuations. Relief of temporary constipation may be accomplished by in-
creasing the dosage of stool softeners such as DSS (colace, surfak, softon, etc.)
1-4 capsules daily, Mondane 1-2 tablets 4-8 hours before retiring, and metamucil,
1-2 tablespoons in fruit juice daily to provide needed bulk quickly. Attention
to diet can frequently resolve most minor bowel problems.
CONCLUSION
The ongoing medical needs of the disabled in the period starting with
discharge from the rehab facility and tapering off when full and competent
involvement and participation in all life activities is reached can best
be met by community based centers which offer diverse services in a non-
medical setting. Those services which may be called 'medical' are concerned
with the prevention of illness and hospitalization together with enhancement
of self confidence, high competency in self care technics, increase in ener-
gy levels, and continuing education in new and relevant medical advances.
The model for this type of facility is the Center for Independent Living
which, among other things, offers a diversity of necessary services in a
warm and welcoming atmosphere. In the socialization process inherent in
such a center, much can be dealt with at low-voltage levels which would
otherwise be ignored or met with later as acute medical problems.
Health care teaching for the disabled should include categories of skin,
bladder, bowel, respiratory, nutrition and obesity, spasticity, emergencies,
monitoring vital signs, facts about supplies and equipment, communicable
diseases including poison oak, VD etc., using medical facilities and re-
sources effectively, and costs and medical consumerism, among others. The
professionals who work with establishment of Peer Health Counselors should
keep in mind the 'seeding' effect and the need for propagation of this sys-
tem in an expanding pattern for which the Peer Health Counselors will be
among the chief agents.
In addition to direct counseling and the establishment of Peer Health
Counselors, a system of teaching and training for non-professionals (attend-
ant, aides, families, etc.) in home nursing skills and rehab principles
should be instituted. A base line standardization of skills and competency
should be set before the disabled employer takes over the specific and more
CONCLUSION
2
detailed personal training desired. This would not only spell greater safety
for the disabled employer, but also save a good deal of time and money in
repétitious and often wasted individual teaching done by the employer before
a 'fit' is reached.
A third goal of such a comprehensive plan should be the establishment
of 'half-way' houses based on the Cowell Residence Program but not restricted
to U.C students or other 'affinity' groupings. Such living systems offer
maximum exposure to peer training and positive role models, plus low-key,
steady professional input, and should have a specific time limit on periods
of residency in order to have maximum beneficial impact.
Although experience is said to be the best teacher, it is certainly the
most expensive and painful. The ability and opportunity to learn from others
and to share one's own first hand knowledge is surely as valuable and indeed,
worth full inclusion in any on-going rehabilitation system. Among others,
this concept provides one of the most sturdy underpinnings for the C.I.L.
SEXUALITY AND INDEPENDENT LIVING SKILLS
-by-
Neil Jacobson
October, 1975
Why live independently? With so much time and attention being
put into teaching the physically disabled how to live independently,
one rarely asks why. The reasons can be found to be the same as
those which propel us to do anything. It feels good it's desirous.
..it's in line with our self-image. What's my definition of self-
image? The way a person perceives him/herself. To perceive is to
see. In looking at ourselves, the first thing we see is a body. Is
it deformed, is it revolting? Does it disturb and nauseate us, or
is it handsome? Do we like what we see and do we take proper care
of it? How do we want others to handle it? Do we enjoy and appre-
ciate its existence, or is that irrelevant? These considerations
are vitally important to those who contemplate living independently.
When we realize that these are the concerns of a sexual being as
well, we have begun to establish the correlations between sexuality
and independent living.
It is my premise that independent living develops the individ-
ual's sexuality. Conversely, sexuality can propel one towards
independent living skills. In examining this cycle from independence
to sex and back again, a person must realize that this exchange does
not describe the situation for all disabled people. Some experience
independence before sexuality and vice-versa. Others never experience
sex while enjoying independence, and still others live out lives in
sheltered environments and are sexually active. This paper does not
attempt to explain each conceivable combination, but simply addresses
itself to the situations where sex may affect the independence of the
physically disabled.
Independent living as I will be using it presumes an environment
in which the disabled person has control over his/her care. It is
a place which allows him to care for himself as much as he is capable
of or wants to, and gives him the freedom to hire (and fire) his own
attendants who do the rest. In this envrionment he can come or go as
he pleases, and it might be a house or an apartment, or even a cluster.
A pre-independent environment is one where the primary care for a
person rests with people other than that individual. His/her parents'
home, a hospital, and a home run by a hired staff are defined as pre-
independent.
Independent living involves two further divisions. The first
incurs the existence of role-models, and in the second division, no
role-models exist. Role-models are provided by other disabled people
who are living independently. This phenomenon is highly important.
In the course of a single day, disabled people are bombarded with
stereotypes. If these are negative, it makes it difficult for one to
maintain a healthy perspective on who he/she is. At times it is vital
to have people around who have been through it to remind you who you
are and what you can be. Other disabled people can best demonstrate
how to better one's psychological perspective, as well as one's physical
environment.
Stereotypes can be assumptions made of the disabled by the public,
and by disabled people themselves. Consider the following statement
taken from an article written by a psychologist:
"Sexual maturity brings and symbolises independence--
to have sexual relations and intercourse and to produce
children of one's own. But the severely physically handi-
capped can never be independent, they will always depend
on others. 1
1. Fox, Joshua; "Sex Education- But for What?"; Special Education,
Vol. 60, No. 2; June, 1971.
The same author goes on to state " sex education (for the disabled)
for what?" In an era where the sexual attitudes of the majority
are slowly changing, and at a time when people are presumably becoming
more sensitive to the needs of the physically disabled, it is amazing
to find statements such as these. It is frankly alarming to encounter
article upon article insinuating that the disabled are sick, unhealthy,
broken facsimiles of a human being. The stereotypes we want to believe
have vanished have instead been perpetuated.
We still hear of parents telling their disabled child that they
are odd, disgusting, or ugly--or of the psychologist recommending to
his client that they should sublimate their sexual drive, stop hoping
for mates, forget marriage, children, or a "normal life." We are
being made aware of institutions that punish patients for accomodating
their sexuality. Patients have been placed in solitary confinement
for masturbating or petting in a dark corner of the hospital. Some
recommend the sterilization of physically disabled persons. Medical
doctors have told some of their disabled clients that they are sterile
when the truth is that nothing is wrong with their reproductive organs.
Such misinformation leading to negative stereotypes may be
alleviated some day through the hard work and persistence which
disabled people are using to educate themselves and the public. But
there are subtler steroetypes more difficult to combat. Can we change
the mass media's representation of beauty? By depicting Mr. America
as the muscled he-man, and Ms. America as the tall, beautiful walkie,
we not only exclude the wheelchair-bound person, but we imply by
comparison that there is something wrong with him/her.
The national passion for young athletic-looking people running hand-
in-hand into the forest at sunset may be depressing to those who fall
-4-
short of that description. It can be devastating to the blind or
disabled person who comes to feel that sex can never be a reality.
Sex, this beautiful, far out thing, isn't to be enjoyed by those
who aren't "beautiful."
It is too often inferred that sex for the disabled can only
be a head trip. There are counselors who tell their client that
since his/her body is non-functional (a subjective point of view),
he/she may imagine what sex can be like and be content with that.
Again, from the previously quoted article: Sex in the head titil-
lates without fulfilling. But to the handicapped person, the body
is scarcely something that gives pleasure 2 It is the rare and
unusual person who can appreciate sex solely through the imagination.
Sex includes the body as well as the mind, and if you are uncomfortable
with your body, sex will probably provide little pleasure.
Other stereotypes center around the disabled as a group. Some
assume that all disabled people have tactile problems. Others assume
that all disabled people lack sensation in their genital areas, or
have problems with their reporductive organs. In reality, with 10%
of the population classified as disabled, it is impossible to draw any
definite conclusions about the disabled on the whole. Still, an insi-
dious pattern of "encouragement" emerges whereby the disabled individual
is never allowed to accept himself.
For example, Cerebral Palsied people are told that being disabled
is all right, but that they should work towards looking as straight as
the spinal cord injured quad, while the quad is told to copy the example
of the paraplegic, who are in turn made to envy the movements of a post-
polio, etc. etc. This twisted hierarchy can lead to many misconceptions,
2 Ibid.
and is as counterproductive as the stereotypes held by the public.
Favoritism based on this heirarchy is common in institutions, where
the higher up one is on the scale of acceptibility, the better care
one can expect to receive. The person on the lower end of this scale
is faced with more prejudice, and it becomes more difficult to achieve
a good body-image and the ultimate goal of independence.
Assuming that a person does have a low body-image, it is likely
that they are less concerned with their body's wellbeing. There is
less to motivate them to be well-groomed, well-fed, healthy, and
otherwise well-cared for. Why worry about the possibility of bed
sores, bladder or kidney infections? Who cares about getting out of
bed, making money, going places? The sexually active individual does
care. Just knowing that someone thinks you are attractive. Knowing
that someone wants to be with you and hold you and love you--gives
you a reason to get out of bed. The rest follows, for an individual
is going to have to strive for independence to be with that other
person. The selection of an attendant becomes important because
someone else is looking at you. Mastering other skills enabling a
person to get out and around and ultimately rely less on others, becomes
important to the sexually active person. This situation can even
stimulate the desire for a vocation and financial security, since the
individual is living not only for himself, but for those who love him
as well.
At this point, we are confronted with an ironic development. On
one hand, the disabled person is hit by stereotypes which generally
label him weird and asexual. These stereotypes indicate that his
sexual desires are incompatible with his "situation," something
subjectively defined by the public. On the other hand, sex may prove
-6-
the inspiration behind his desire to live independently, by giving
him a reason to care for his body and his needs. The disabled person
comes to think better of himself, and so do others. I would like to
discuss, then, several paths which lead to sexual activity and indepen-
dent living.
An important step lies in sex education. One of the major
obstacles to sexual activity is simply not knowing how to go about
it. For the congenitally disabled, sex education is often completely
ignored. Whereas the non-disabled can learn about sex from their
peers, disabled people who are unable to get out are not exposed
to this information. It is extremely important that sex education
be available to the disabled. Apart from specific questions relating
to the nature of one's own disability, and its effects or special
considerations, sex education need differ little from that offered
to the non-disabled. For instance, a Cerebral Palsied person may
want to know what to do to reduce spasms, or what positions would be
better suited than the classic missionary which might be difficult to
manuever. For these reasons, other disabled people are valuable
because of their personal experience. This leads back to role-models.
For the spinal cord injured and other disabilities where the
physiology might change, a special kind of sex education is in order.
For those who have grown up in society non-disabled until later in
life, myriad stereotypes must be broken. The stereotype of Mr. and
Ms. America-Beautiful, the restriction to genital sex, the idea that
sex is goal-oriented with the winner attaining the big o in the sky--
although all of these sentiments have an adverse effect on the populace
as a whole, the need to disprove them is magnified for the newly disabled.
-7-
Similarly, limiting one's self to the satisfaction of one's
partner is another misconception. Just as we learn that there is
no Santa Claus, we learn in sex that it is not just enough to give,
but you need to know how to receive as well. We want to please our
partner, and our partner will generally want to please us. So,
what makes out body feel good? What are our erogenous zones? They
include more than just our genitals. Both partners deserve to attain
peak satisfaction, whatever that might be. With the newly disabled,
as with the congenitally disabled, role-models are called for. It's
one thing for a non-disabled doctor to tell a spinal cord injured
person not to concern himself with the lack of sensation in the
genital area, it is another thing for a disabled person to explain
how he/she experiences the same orgasmic feeling from stimulation
of non-genital areas as he/she experienced before his/her accident.
Sex education must also give accurate information. The era of
telling women that they need only lie there is over. The era of
telling disabled men and women that they are sterile because of their
disability (when it isn't true) is over, and so is the denial of one's
own sexuality. Imagine the doctor who tells his spinal cord injured
patient that the feeling of orgasm which they experience is "phantom
orgasm." One must question whether, if the phantom orgasm exists,
why more people don't go around "phantomizing" their orgasms. The
word phantom does little more than belittle the pleasure that one
can achieve.
Before the disabled person can become sexually active, he must
gain social confidence. This is crucial, as it is necessary to know
-8-
how to approach a potential partner. For many congenitally
disabled, because they have been raised in isolation, the opportuni-
ties for learning social skills are limited. Growing up in this
manner, a person tends to find that they have little in common with
their peers. Not being in the streets with other children, disabled
people may not know the accepted means of meeting other people. Some
disabled people are so afraid of being rejected, that they take no
risks and remain isolated. Still others, who may really believe that
they are inferior, take unnecessary risks. When they are refused, they
view the refusal as rejection, or a denial, and in turn reenforce the
negaitve self-image that keeps them isolated. By talking to other
disabled people, one can learn from the experience of others what
may or may not be appropriate behavior. During one-on-one encounters,
two people can share and learn from each other. Group counseling has
also proven itself in teaching socialization skills.
There still remains the phenomenon of understanding intellectually
the procedures in sex and socialization, and not being able to put
them into practise. It's the old saw about knowing what to do, but
finding that it is something else to do it.
Masturbation can be the first step in this problem. As
aforementioned, if you don't know what makes you feel good, no one
else will. Masturbation and the exploration of a person's own body
without the pressure of performing, may lead one to really discover
that his body does feel good. For the first time, a person may be
receiving pleasure from his body instead of seeing it as an object
that others are always throwing around and working on. Masturbation
is sometimes felt by an individual to be the most pleasurable act
in sex, even when other avenues are available. If sex is for pleasure,
then there is no reason to separate masturbation from the rest and
deny one's self this form of pleasure.
Another way of bridging the gap between talking about sex and
taking part in it, is via the use of surrogates. For many people,
disabled or not, the fear of perøformance breakdown is intense.
Surrogates may provide that form of confidence needed before one
pursues a relationship. As was indicated before, disabled people
may want to experiment with different forms of sex, positions, etc.
Surrogates who may be experienced with disabled people can offer new
ideas and actually give the man or woman suggestions as to how to
manuever. In this society, where sex is talked about so much, it
is common for disabled people to develop grandiose ideas about what
sex actually is. If these ideas grow further out of proportion,
he/she may not be able to find a partner or be satisfied working
under such misconceptions. Surrogates can be utilized here to put
sex back into its proper perspective while showing that pleasure is
indeed possible. Surrogates can be used to garner feedback on
certain socialization skills, as well. Although it is only one
person reacting to another, it is important to receive immediate
recognition of one's efforts. It is highly recommended that surro-
gates be used in conjunction with counseling. This assures that
practical knowledge is accompanied by cognitive knowledge.
Disabled people may also learn from homosexual and bisexual
individuals who have also had the courage to call society ON its
game. If 3ex is not merely a baby-producing function, and
I am assuming that it is not, then we must consider it an ignorant
societal more which prohibits men from loving men and women from
-10-
loving women. It is more important for people to pursue those feelings
that reenforce their sense of well-being than it is for them to
succumb to the same sorts of stereotypes that we have been and are
continuing to fight.
It must be said that no one is advocating that all disabled
people engage in any or all of the aforementioned situations with
respect to sexual experiences. To feel pressured into situations
where one is not comfortable (homosexuality, oral sex, etc.) merely
replaces one restriction with another. Just as there are stereotypes
relating to disability, a disabled person must be aware of the stereo-
types relating to sex--that sex is a straight-forward, missionary,
heterosexual experience. The simple point is, one should not limit
himself to what others expect of him, either in terms of ability or
sexuality.
Another avenue to sexual activity can be found in counseling.
I have alluded to counseling earlier, but would like to speak of
three major approaches. The predominate form of counseling available
to the disabled today is that of peer-counseling, which brings us
back to the use of role-models. Once again, it is my firm belief
that most disabled people do not have the debilitating problems as-
cribed to them by society, but rather lack the confidence and the
simple know-how that enables them to become sexually active. A
peer is the most effective and logical choice for providing the
confidence and information based on accurate experience and not
second-hand sterotyped subjectivity. It doesn't need to be stated
that all sexually active disabled people are not necessarily good
peer counselors. In fact, it is common that the disabled individual
11-
who has "made it" may lack the necessary empathy to make him an
effective counselor. I also believe that non-disabled persons can
learn to be peer counselors (in so far as age is concerned) and do a
fine job as well. Groups led by one or more individuals have proven
their worth. Some people feel better in situations where they can
share common experiences with others. Group counseling often assures
the individual that his experiences are neither as unique nor as
horrifying as he may have felt. In addition, group counseling may
provide the positive feedback of several people, which might prove
more reassuring than the feedback from a single person. Finally,
professional counseling, whether it is psychotherapeutic or behavioralist,
has been valuable to some disabled people. But once again, as past
attitudes on the parts of professionals have shown us , there is a need
for more disabled people in the professional realm.
Not all disabled people either need or benefit from counseling.
Some people need time alone to figure things out for themselves,
while others do need a peer counselor. Others may need the catharsis
of a group in order to benefit, while still others feel most secure in
the treatment of a professional. All three should be made available,
even if none need be used.
The belief that positive attitudes need no reenforcement is
naive. The person in the institution who is punished for sucking
his finger, or the individual placed in solitary confinement, or
the couple who find themselves without dinner when caught petting,
may find themselves unable to sustain any positive feeling towards
themselves and their sexuality. The person locked in his parents'
home who is disallowed a wheelchair will very likely forget those
-12-
social skills he may have learned. If a disabled person has no
place or opportunity to practise what he has learned, it tends to
follow that he will forget or lose his confidence in his prior ability.
It is crucial that an effort be mounted to educate the professionals
and the parents of the disabled.
The disabled themselves are well-suited to do just that. In
the process of educating these two groups, the three major forms
of counseling once again prove worthwhile. One-on-one peer counseling,
group endeavors, and professionals (speaking to either parents or
other professionals) can all be used. The disabled should expand
their role in this area, and although programs have begun, more are
needed.
In any discussion of sex, marriage and divorce can be topics
of consideration. Just as marriage can be an asset to the sexually
active, it can also be a hindrance. Many disabled people have married
and are leading happy lives. Their sexuality is reported to be
satisfactory, and each strives to give and receive. With marriage
it is once again not necessary to follow the rules predetermined by
society. Marriages following the stereotype of man-as-breadwinner
and woman-as-housewife-and-child-bearer are probably in for rough
times when disability is intorduced into the picture.
When one of the spouses becomes disabled during the course of
a marriage, one of the most important factors in determining the
continued future of that marriage lies in the pre-existant conditions.
Those families who have weathered crises together, have shared
responsibilities, react to the introduction of disability in a more
calm and realistic fashion. Reports have demonstrated that it was
-13-.
the couple's ability to share responsibility and the stress of crises,
not the severity of disability, the lack of mobility, the lack of
sensation, the inability to work, that proved most instrumental in
sustaining the marriage. It was further found that just as the disabled
individual need; accurate information concerning his/her sexuality,
so the spouse of that person required the same information. It is
important that the non-disabled marriage partner not be relegated
to an attendant. I am not implying that the spouse not do any
attendant-type work, but rather that a distinction be made between
attendant and lover, and that the non-disabled spouse's feelings in
that area be respected. A newly disabled individual can become in
some respects a different person. His body may function differently,
his ideas and beliefs may be altered, and his aspirations, interests,
and experiences may change as a result of this change. Spouses may
or may not adapt or go along with these changes in the disabled lover,
and divorce might (and does) occur.
The social mores that accompany divorce affect disabled people
in much the same way. Divorce tends to be viewed as a failure, and
one to be avoided at all costs. In some cases, divorce is the best
answer, allowing for greater independence and happiness for both
parties. No one advocates divorce as a means towards independence.
However, any obstacle to happiness or independence must be examined,
whether it is being confined to an institution, a parent's home,
a spouse's home, or whatever, lest it lead to inactivity and lonliness.
Some disabled people sublimate their sexuality, and put their
energy into unrelated activities. They might, for instance, become
so extremely hard-working that they have neither the time nor the
energy to pursue a social life. In one way, such a situation may
-14-
serve to relax certain fears. Since the person knows he/she is
involved with work and doesn't have time for sex, they may relax
their barriers and find it easier to meet people since there is no
implied sexual desire. The mere fact of their coming into contact
with other people may lead them into sexual activity. Still, such
a result of sublimating sex drives, and turning to work, occurs in
but a minority of cases. For most, this denial of sexuality is
only a self-imposed rationalization ("I'm too busy") rather than
an indirect approach to sexual realization.
People must definitely progress at their own rate, and for some,
a period of sublimation might be needed even if it creates frustration.
Everyone reserves the right to go at their own rate, and accomplish
things at their own rate in their own way. What has preceded merely
points out different avenues towards a certain goal--that of sexual
activity.
Having discussed several ways in which disabled people approach
the problem of sexual activity, and after having shown how sexuality
can affect independent living ( and vice-versa ", there is only one
conclusion to be drawn. Disabled individuals can and are becoming
independent and are taking control over their own lives. Further-
more, disabled individuals can be sexually active, gaining pleasure
from their bodies and giving pleasure to others. When we see this
happening all around us, the question of how, why, where, and for
what becomes secondary.
14
KEY WORDS: Attitude; paraplegia; quadriplegia; rehabilitation; sex; sex behavior; spinal cord injuries
Sexual Attitude Reassessment Workshops:
Effect on Spinal Cord Injured Adults, Their Partners and
Rehabilitation Professionals
James P. Held, B.Ch.E., Theodore M. Cole, M.D., Constance A. Held, Carol Anderson, Richard A. Chilgren, M.D.
Five workshops, focused on the sexuality of adults with
that it predisposes the patient to act and live accord-
acquired spinal cord injuries, were offered for rehabilita-
ing to these beliefs. In some cases, the physician's
tion professionals and spinal cord injured adults between
personal anxieties regarding sexuality make him vir-
December 1971 and October 1972 by the University of
tually inaccessible to the patient who wishes to seek
Minnesota's Program in Human Sexuality and Department
advice on this subject. The subtly rebuffed patient
of Physical Medicine and Rehabilitation. The fifth work-
shop was jointly sponsored with the American Academy of
cannot distinguish between the physician's discom-
Physical Medicine and Rehabilitation (AAPM&R) and in-
fort and the appropriateness of his sexually oriented
cluded an optional third day on sexual counseling. The
questions or needs. Often the result is that open dis-
objectives of the workshops were to assist the professional
cussion is made impossible.¹
to be more helpful with others and the disabled to be
Talbot² comments that " of all of the problems
more helpful to themselves. These objectives were accom-
confronting the spinal cord injured patient there is
plished by demythologizing sexual behavior, desensa-
none from which it has taken longer to dispel the
tionalizing sexual stimuli and aiding the disabled person
mists of ignorance than the matter of sexual function.
and professional to come to an understanding and accept-
ance of the sexuality of themselves as well as others. Pre-
The unwillingness of the medical profession to inform
workshop, immediately postworkshop and follow-up ques-
itself on the subject has been incomprehensible and
tionnaires evaluated the effects of the seminars upon all
inexcusable."
participants: disabled, able-bodied, professional and non-
In an effort to dispel the mists of ignorance which
professional. Of the 76 who returned anonymous question-
Talbot condemns, between December 1971 and Oc-
naires mailed to the 95 spinal cord injured adults and their
tober 1972, the University of Minnesota's Program in
partners, 96.0% reported that they were glad they at-
Human Sexuality and Department of Physical Medi-
tended, 82.8% stated that they were personally bene-
fited and 90.8% reported that they would recommend the
cine and Rehabilitation presented five sexual attitude
program to others like themselves. Of the 168 signed
reassessment workshops, focused on the sexuality of
evaluations, 119 were returned by the professional group.
and sexual counseling for spinal cord injured patients,
Of the 112 indicating that they or their institutions were
to rehabilitation professionals and spinal cord injured
currently involved in providing sexual counseling and edu-
adults. The last of these was sponsored by the Ameri-
cation to the physically disabled, 97.3% reported that the
can Academy of Physical Medicine and Rehabilita-
University of Minnesota workshop had given ideas, impetus
tion (AAPM&R). Participants were chosen from those
or form to the current effort. Sexual attitudes and attitude
responding to an invitation sent to the AAPM&R
changes in the AAPM&R-sponsored workshop were similar
and other rehabilitation professionals and disabled
to those measured in participants in other workshops in-
volving medical and seminary students and community
adults living in the community who heard about the
members. Further workshops have been planned based
program and registered to participate.
upon these results.
These workshops were all derived from a basic
Within the larger framework of acute, restorative
two-day format developed by the National Sex Forum
and rehabilitative treatment of the spinal cord in-
of San Francisco and adapted for use in the human
jured lies the relatively ignored area of diagnosis and
sexuality course for Minnesota medical students by
treatment of sexual function spinal cord injury.
the Program in Human Sexuality. Methods of learn-
Paraplegic and quadriplegic adults are becoming less
ing were experiential involving extensive use of slides,
content to lead lives affected by the myths commonly
films, panels and discussions in the large group fol-
believed by many medical personnel and others in
lowed by small group discussions after each topic
our society. Some of these myths suggest that handi-
From the University of Minnesota Medical School, Minneapolis.
This study was supported in part by grants from the Common-
capped people have no sexual needs or desires; others
wealth Fund, the Bush Foundation, the Playboy Foundation, Ameri-
can Lutheran Church Division of Social Service, United Methodist
imply that people with physical disability have exces-
Church Board of Christian Social Concerns, Rehabilitation Research
sive or perverted sexual needs. Unfortunately, when
and Training Center Grant No. RT-2, Social and Rehabilitation
Services, Department of Health, Education and Welfare, Washing-
patients are treated by health care professionals who
ton, DC, the Department of Physical Medicine and Rehabilitation
of the University of Minnesota Medical School.
hold these beliefs, the tenor of treatment may be such
Presented at the 50th Annual Session of the American Congress
of Rehabilitation Medicine, Washington, DC, October 22, 1973.
Reprint from ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION, Vol. 56, January, 1975.
"Copyright, 1975, American Congress of Rehabilitation Medicine."
SEXUAL ATTITUDE REASSESSMENT WORKSHOPS, Held
15
oriented segment. The AAPM&R workshop also in-
Results
cluded a third day for professionals which was de-
EVALUATION OF THE WORKSHOP
voted to sexual history taking and sexual counseling
Nonprofessionals-Questionnaires were returned
and included an interview demonstration in the large
from 76 (80%) of the 95 spinal cord injured partici-
group and practice for participants in their small
pants and their partners. Of those 76, 96.0% indi-
groups.
cated that they were glad that they had attended the
The format was constructed from several varied
workshop, 92.1% thought the time and expense had
components. Selected films on certain aspects of
been worthwhile, 82.8% thought that the experience
human sexuality such as fantasy, masturbation, homo-
had been good for them personally and 90.8% would
sexuality, sexual therapy and sexuality of the disabled
recommend it to others like themselves.
were shown. A multimedia presentation of pornogra-
Professionals-Of 168 questionnaires mailed to
phy in saturation amounts was used at the end of the
professionals, 119 (70.8%) were returned. Ninety-
first day to facilitate the participant to a consideration
nine reported that their institutions were currently
of those aspects of sexuality other than physical sex.
involved in education, counseling or other efforts in
A panel of disabled persons and their partners to-
the area of sexuality of the physically disabled and
gether with large group presentations of data pro-
98 (82.3%) said that they personally were involved.
vided information and shed light on the sexual feel-
Of 112 whose institution and/or who themselves
ings of paraplegic and quadriplegic adults. The small
were involved, 97.3% reported that the workshop
group discussions occurring at various points through-
had given ideas, impetus or form to their effort in
out the workshop were the key to the process:4 They
this area. They represent more than 44 institutions
provided a chance for participants to share feelings
in seventeen states.
and reactions to the material being presented and to
integrate the experience into themselves. The partici-
AAPM&R Program Participants-Of the 85
pants had been encouraged to bring with them a
AAPM&R sponsored program participants, 84 com-
spouse or significant other person with whom they
pleted the evaluation form immediately after the first
could discuss sexual matters. Experience had shown
two days of the workshop.
this to be beneficial for continued learning after the
Participants included a wide range of rehabilita-
workshop.
tion professionals (psychologists, counselors, nurses,
An evaluation of the workshops was undertaken
psychiatrists and physiatrists) and several disabled
to determine their effect on the participants, rehabili-
adults. Of the 43 men and 39 women who responded,
tation professionals, able-bodied and disabled. This
98.8% termed the first two days personally bene-
paper deals with the results of that evaluation.
ficial, 88.1% thought it should be a part of rehabili-
tation professionals' training and 96.4% said the ex-
perience was not personally harmful. While 53.6%
Methods of Evaluation
of the respondents felt that they could discuss sex
In April 1973 two types of follow-up question-
freely with others before the two days, 75.6% said
naires were mailed to participants in the five work-
they could discuss sex more freely afterward.
shops. The first type of questionnaire was sent to all
The third day of the workshop, focusing on sexual
nonprofessionals including spinal cord injured and
history-taking and counseling, was attended by 51
their partners. It asked if the participant was glad
he attended the seminar, if he was personally bene-
professionals. The questionnaires completed before
the third day showed that 67.3% frequently had the
fited by the seminar and if he would recommend the
opportunity to do sex counseling in their practice.
experience to others like himself.
While 100% thought they should, only 32.7% ac-
The second type of questionnaire was a letter to
tually did sex counseling with any frequency and
professionals asking about their own involvement in
only 51% did it sometimes. While 54.0% felt un-
sexual counseling and education, their institution's
comfortable and 4.0% felt ineffective, only 18% felt
involvement and how the seminar might have af-
effective. Overall, 63.2% rated themselves as having
fected either.
no specific training and limited experience whereas
4.1% listed themselves as trained and experienced.
For the AAPM&R sponsored workshop, evalua-
At the end of the third day, 96.0% said that the
tion questionnaires were completed both before the
workshop had been a good learning experience for
workshop, immediately at the end of the first two
taking a sexual history.
days, before and after the third day and six weeks
after the workshop. It is planned that the partici-
EVALUATION OF SEXUAL ATTITUDES OF PARTICIPANTS
pants will be mailed a follow-up attitude question-
In addition to the above questionnaires about the
naire one year after the workshop.
workshop, the participants completed a question-
Arch Phys Med Rehabil Vol 56, Jan 1975
16
SEXUAL ATTITUDE REASSESSMENT WORKSHOPS, Held
naire about their attitudes just before and six weeks
Table 1: Sexual Attitude Scales for 48 Participants in
after attending. Fifty-three postworkshop question-
AAPM&R Sponsored Workshop*
naires were returned (representing 62% of those
attending). Of the 53 who responded, 50.9% were
Response
Postworkshop
men and 49.0% women; 71.7% were married and
Scale
Preworkshop
(6 weeks)
Change
68% were between the ages of 27 and 45 years.
I
2.34
2.27
-0.07
The first set of attitude scales was formed from a
II
series of responses describing the participant's emo-
2.17
2.14
-0.04
tional reaction to the idea of different persons en-
III
2.23
2.14
-0.09
gaging in categories of certain sexual activities using
IV
3.85
3.45
-0.408
the scale of 1 to 5 as follows:
V
2.04
1.95
-0.10
1-I feel great about it.
VI
2.43
2.29
-0.14t
2-I feel comfortable about it.
VII
3.91
3.60
-0.30%
3-I feel indifferent about it.
VIII
3.88
3.72
-0.16
4-I feel uncomfortable about it.
IX
3.85
3.63
-0.23t
5-I feel repulsed by it.
Nine activities comprise the first nine scales, as fol-
A
2.94
2.83
-0.111
lows:
B
3.15
3.00
-0.15t
I. Using erotica (such as erotic literature, pic-
C
2.44
2.22
-0.221
tures, films, live sex show) to stimulate
D
1.77
1.69
-0.08t
sexual arousal,
E
3.29
3.10
-0.19t
II. Fantasy as a sexual stimulation in private
masturbation,
*Scales are described in text. Response code: 1-I feel great about
it; 2--I feel comfortable about it: 3-I feel indifferent about it;
III. Mutual masturbation with someone of the
4-I feel uncomfortable about it; 5-I feel repulsed by it.
tp < 0.05 (initial criterion level).
opposite sex,
Ip < 0.01.
Sp < 0.0001.
IV. Mutual masturbation with someone of the
same sex,
V. Sexual intercourse with someone of the op-
(scales A-E). The results before the workshop, six
posite sex,
weeks after it and the changes are summarized in
VI. Oral-genital stimulation with someone of
table 1. Five persons improperly completed the scales
for a final N of 48. The overall scores indicate
the opposite sex,
VII. Oral-genital stimulation with someone of
changes toward lower numbers in all scales, nine of
the same sex,
which are statistically significant.
VIII. Engaging in sex with your partner in the
A control study of 18 first-year medical students
presence of others,
from 18 to 35 years of age, 72% of whom were men,
IX. Three or more people engaging in inter-
who had not had a similar two-day course, showed
course and other sexual activity together.
no changes of statistical significance (table 2).
The following categories of people were listed under
The scales were computed for the 32 people who
the applicable activities to form the second set of
completed a preworkshop questionnaire but did not
scales:
respond to the postworkshop questionnaire, to check
A. For yourself (I through IX),
the validity of the change data. The values shown in
B. For midadolescents (I through VII),
table 3 are close to the preworkshop values for those
C. For unmarried adults (I through VII),
who did respond (table 1).
D. For married adults (I through VII),
In addition to asking about their attitudes, the six-
E. For married adults engaging in this as a secret
week postworkshop questionnaire asked the partici-
extramarital activity (I through VII).
pants several questions about the seminar. The re-
The general category "For others" was listed for VIII
sponses indicated that 98.1% felt the workshop was
and IX, although not computed as a separate scale.
personally beneficial, 38.5% said that their sexual
The responses for all questions of each scale were
behavior had changed to produce greater satisfac-
summed and tested for statistical significance of pre-
tion, and 61.5% said that their nonsexual behavior
post differences using the Wilcoxon matched pairs
had changed toward more comfort for themselves,
while none felt it had decreased.
signed ranks test.⁵ The average for the group on each
scale was divided by the number of items in that
Discussion
scale. Thus, we had an average measure of how the
respondents felt about people engaging in each ac-
An important feedback on the effect of a sexual
tivity (scales I-IX), and how they felt about each
attitude reassessment workshop is the ratings and
type of person engaging in different sexual activities
comments of the participants. In this case there were
Arch Phys Med Rehabil Vol 56, Jan 1975
SEXUAL ATTITUDE REASSESSMENT WORKSHOPS, Held
17
Table 2: Sexual Attitude Scales for Control Group of 18
Table 3: Preworkshop Scales for 32 AAPM&R Workshop
First-Year Medical Students*
Participants Who Didn't Answer Follow-up Questionnaire*
Response
Response,
Scale
Preworkshop
Postworkshop
Changet
Scale
preworkshop
I
2.46
2.31
-0.15
I
2.33
II
2.24
2.14
-0.10
II
2.22
III
2.52
2.48
-0.04
III
2.23
IV
4.07
3.92
-0.15
IV
3.74
V
2.21
2.23
+0.02
V
2.10
VI
2.42
2.53
+0.11
VI
2.35
VII
4.11
4.08
-0.03
VII
3.87
VIII
3.72
3.58
-0.14
VIII
3.78
IX
3.58
2.61
+0.03
IX
3.81
A
3.01
3.00
-0.01
A
2.93
B
3.07
3.04
-0.03
B
3.19
C
2.56
2.48
-0.06
C
2.41
D
1.86
1.81
-0.05
D
1.69
E
3.87
3.86
-0.01
E
3.27
*Scales are described in text. Response code: 1--I feel great about
*Scales are described in text. Response code: 1-I feel great about
it; 2-I feel comfortable about it; 3-I feel indifferent about it;
it; 2-I feel comfortable about it: 3--I feel indifferent about it;
4-I feel uncomfortable about it; 5-I feel repulsed by it.
4-I feel uncomfortable about it; 5-I feel repulsed by it.
tNone of the changes are significant at the 0.05 level.
two types of participants, the disabled and their part-
Questionnaires completed just before and just after
ners and the rehabilitation professionals and their
the third day of the AAPM&R workshop give infor-
partners. Both long-term and short-term evaluation
mation about the sexual counseling efforts of the
is available, with detailed attitudinal data available
participating rehabilitation professionals and their
on one workshop.
reaction to a program aimed at presenting specific
Results of the mail-out questionnaire for nonpro-
counseling skills. While 83.6% of the professionals
fessionals showed very high support for the worth of
reported that they do sexual counseling at least some-
times and more than two thirds feel at least com-
the seminars, and while the estimate of personal bene-
fit was somewhat lower, the disabled participants
fortable about their proficiency, only one third do it
overwhelmingly recommended the seminar for others
frequently and only 18% feel that they are effective
like themselves. These results clearly show that the
or very effective. Perhaps this is because approxi-
disabled think the seminars are beneficial to others
mately two thirds have no specific training and only
like themselves and certainly not harmful.
limited experience, in spite of the fact that 100%
The letters returned from professionals show that
think that they should counsel patients in this area.
such workshops may serve as a spark that starts and
The third day on sexual counseling and history taking
aids education, counseling or other efforts in the area
was deemed valuable by 96% of the participants.
of sexuality of the disabled. The comments of pro-
The comments after the third day, when participants
fessional participants further underline their wide-
were asked about how the third day would affect
ranging impact (available upon request from the
their counseling, seem to support the numeric data
first author).
with comments such as, "beneficial," and "improve
it, make it more frequent."
The in-depth evaluation of the AAPM&R work-
shop has broad implications. The participants repre-
Attitudes in the AAPM&R group showed no dra-
sent a wide range of the helping professionals in-
matic changes, with the scale values being very simi-
volved in the rehabilitation setting. The results may
lar to those of other workshop participants in the
generally indicate future results with similarly com-
Fall of 1972. In many cases, the group of rehabilita-
posed groups.
tion professionals was more comfortable with sexu-
Immediate reactions to the two-day workshop (first
ality than were other groups. Statistically significant
two days of the AAPM&R workshop) were extraordi-
changes did occur in 9 of the 14 areas measured. The
narily positive. The vast majority held the opinion
changes in all cases were in the direction of in-
that the workshop was not harmful, but rather bene-
creased comfort. Those who did not respond to the
ficial, and that it should be a required part of a
six-week follow-up questionnaire had similar atti-
rehabilitation professional's training.
tudes on the preworkshop questionnaire to those who
Arch Phys Med Rehabil Vol 56, Jan 1975
18
SEXUAL ATTITUDE REASSESSMENT WORKSHOPS, Held
did return it, suggesting that our measure has not
June and July 1973, two of them sponsored with the
been seriously compromised by those not responding
AAPM&R. Further workshops in the area of human
to the follow-up.
sexuality and spinal cord injury are planned.
The results on questions about benefit on the six-
week follow-up support the data obtained immedi-
ADDRESS REPRINT REQUESTS TO:
Mr. James Paul Held
ately after the seminar. Participants reported not
Program in Human Sexuality
University of Minnesota Medical School
only that it was beneficial but that it affected their
2630 University Avenue SE
Minneapolis, MN 55414
sexual behavior beneficially, and it increased the
majority's comfort in nonsexual behavior toward
others while decreasing no one's comfort.
References
1. Cole TM, Chilgren RA, Rosenberg P: New program of
Summary
sex education and counseling for spinal cord injured
adults and health care professionals. Int J Paraplegia
An evaluation of four sexual attitude reassessment
11:111-124, 1973
workshops conducted by the Program in Human Sex-
2. Talbot HS: Proceedings of 17th Veteran's Administra-
uality, with a focus on the sexuality of the spinal
tion Spinal Cord Injury Conference, Veteran's Adminis-
cord injured, and of a fifth workshop including
tration Hospital, Bronx, NY. Washington, DC, Veteran's
Administration, 1969, pp 222-223
sexual counseling, jointly sponsored with the Ameri-
3. Chilgren RA, Briggs MM: On being explicit: sex edu-
can Academy of Physical Medicine and Rehabilita-
cation for professionals. SIECUS Report 1:1-4, May
tion, shows such workshops to be beneficial to both
1973
rehabilitation professionals and spinal cord injured
4. Rosenberg P, Chilgren RA: Sex education discussion
adults.
groups in medical setting. Int J Group Psychother 43:
23-41, 1973
Based on the results of this evaluation several addi-
5. Seigel S: Non Parametric Statistics for Behavioral Sci-
tional workshops on sexual counseling were held in
ences. New York, McGraw-Hill, 1956