Life on Wheels (74 page)

Yes, there are a lot of adjustments to make, and some issues are complicated in the already treacherous milieu of love, sex, and babies. But, just as there are roadblocks, there are discoveries unique to sex with a disability if you have the patience and the adaptability to find them. If you can overcome the initial obstacle of being discouraged by all the cultural messages of youth and body image and the overemphasis on intercourse as sex, possibilities will expand. Your sexual nature is a gift of your existence, and no disability—no matter how severe—disqualifies you from the capacity for intimacy and sensuality.

1

. Nosek MA.

. Houston: Baylor College of Medicine, Center for Research on Women with Physical Disabilities, Department of Physical Medicine and Rehabilitation; 1997:3.

2

. Sipski ML, Alexander CJ. Sexual activities, response and satisfaction in women pre-and post-spinal cord injury.

1993;74(10):1025-9

3

. Tepper M. Love bites.

. 1996;June:22.

4

. Hale G, ed.

. New York: Paddington Press; 1979.

5

. Rintala DH, Howland CA, Nosek MA,

Dating issues for women with physical disabilities.

1997;15(4):219-42.

6

. Kroll K, Levy Klein E.

. Bethesda: Woodbine House; 1995.

7

. Frankel A. Sexual problems in rehabilitation.

1967;33(5):19-20.

8

. Alexander CJ, Sipski ML, Findley TW. Sexual activities, desire, and satisfaction in males pre-and post-spinal cord injury.

1993;22(3):217-28.

9

. Sipski ML, Alexander CJ.

. VHS. West Orange, NJ: Kessler Medical Rehabilitation Research and Education Center; 1993.

10

. Fisher HE.

. New York: Fawcett Books; 1995:26.

11

.

. VHS. Minneapolis: University of Minnesota; 1994.

12

. Robinson K. Caregiver and spouse: should the twain ever meet?

. 1998;Feb:12.

13

. Travis R. Making love like a woman.

1997;Feb:39.

14

. Sipski ML, Alexander CJ, Rosen RC. Orgasm in women with spinal cord injuries: a laboratory-based assessment.

1995;76:1097-102.

15

. Toms-Barker L, Maralani V.

. Berkeley: Berkeley Planning Associates; 1997.

16

. Maddox S.

. Malibu: Miramar Publications; 1994:354.

17

. Brackett NL, Lynne CM, Weizman MS, Bloch WE, Abae M. Endocrine profiles and semen quality of spinal cord injured men.

1994;151:117.

18

. Brackett NL, Nash MS, Lynne CM. Male fertility following spinal cord injury: facts and fiction.

1996;76 (11):1221-31.

19

. Brackett NL, Padron RP, Lynne CM. Semen quality of spinal cord injured men is better when obtained by vibratory stimulation versus electroejaculation.

1997;157:152-6.

20

. Padron OF, Brackett NL, Weizman MS, Lynne CM. Semen of spinal cord injured men freezes reliably.

1994;15(13):266-9.

Recently, there has been dramatic progress in central nervous system (CNS) research. Researchers have begun to unlock the complexities of what happens when the brain and spinal cord are injured and what obstructs their ability to regenerate and recover function. Researchers are working on a remarkably wide variety of fronts to figure out how to promote the growth of CNS tissues and to get nerve pathways communicating again.

Many of the current lines of research might translate into increased function for thousands of people with disabilities. It is likely that research into conditions such as muscular dystrophy or multiple sclerosis will provide insights on spinal cord injury (SCI). What researchers discover about spinal cord trauma may well impact treatment of other conditions involving nerve cell damage. The advanced technologies now available to scientists have allowed them to make discoveries never before possible in shorter time frames than ever before imagined. Given the recent pace of discovery, it follows naturally that we can look forward to more insight into the CNS and what might be done to support it, making recovery reliable following insult. Plenty of researchers say with certainty that it is just a matter of time, and money.

CNS research is also about much more than functional recovery of ambulation—walking. Scientists are exploring issues that relate primarily to quality of life with disability—pain management, sexual function, bowel and bladder management, exercise physiology, and aging with disability among them. Even memory and life perspective are becoming better understood in the modern wave of neuroscience.

The very notion of walking again following paralysis is very potent, deep in the modern psyche, and used unsparingly in the media as a surefire device for tugging on emotional heartstrings. Not that many years ago, doctors thought it was inconceivable to solve the puzzle of how to repair spinal cord damage or brain cell damage:

However, the fantasy of walking again may yet come true. Significant advances in molecular and cellular biology have expanded the potential to understand and influence the human nervous system. There is considerable optimism with regard to repairing chronically injured spinal cords.

Spinal cord research is not just about getting the spinal cord to grow, but about mapping the structure of the body and its systems, methods of treatment and rehabilitation, and genetic advances that overlap into many other areas of medical research. Walking gets all the emphasis in the media when, in fact, there are many other benefits to be gained from CNS research.

Walking also depends on whether we are talking about acute or chronic injury and degree of completeness. Many people with acute, incomplete SCI who get treated quickly have a chance of walking out of the hospital.

Setting aside whether a given person or group of people will walk again, the real value of this research work is that some people with disabilities will be able to function at higher levels of independence and activity than they can at this moment. Life will change significantly for those who now suffer too much pain or whose time is so occupied with managing their disability that they cannot commit themselves to a career or to travel, for instance. Some people can barely leave their homes or find themselves trapped in an extended care facility. Such people are much more interested in increasing their freedom and independence in any way possible than they are in walking.

The disability community includes people who have expressed concern— if not outright resentment—about the degree of emphasis on a quest for a cure. They resent being thought of as “broken” and resist the notion that they should happily change to fit the popular image of what it means to be “whole.” Some see the quest for cure as prejudicial, as if a person with a disability is assumed to be incapable of living a meaningful life.

But the more widespread attitude appears to be one of balance. When you are injured, you get on with your life, which includes disability, while welcoming the potential for developments in research that can contribute to your quality of life:

Cure research can be a source of emotional support and hope for families, albeit with the attending danger of expectations that might not be fulfilled. Physicians tend to be extremely cautious discussing research with their patients for fear of building up unrealistic hopes. Many people find that their treating doctors are less informed on the status of research than they are themselves. Still, it’s possible to be hopeful while taking what you get:

Others seem to use the potential for cure as an excuse not to face their disabilities, to allow themselves to be cared for, and to surrender to the fears and challenges that must be faced in adapting to their disability. According to an active disabled person:

The story of Christopher Reeve (not “Reeves”) embodies the modern story of our cultural relationship to cure. Soon after his C2 SCI in a horseback riding accident in 1995, Reeve began to explore the research milieu and committed himself to supporting—in fact, dramatically accelerating—its efforts. In the early years, he made dramatic statements about his intention to walk before reaching the age of 50. At times, he stated a short number of years until the cure. These kinds of comments enraged some in the disability community, who felt that Reeve was winding back the years of advocacy work, the goal of which was to shift the view of disability from the “medical model” to the “independence model.”

There were, in fact, protests where Reeve would make public appearances, and the effect of this was only to put a barrier between him and the leaders of the disability community who could have worked with him productively as he made the same adjustments that anybody else with a significant disability needed to make—both functionally and psychologically. In this way, the disability community missed the chance to influence the direction that Reeve would wield his considerable charisma and public visibility.

In fact, Reeve, his wife Dana, and those close to them were committed to quality-of-life issues with disability from the very start. Says close friend and former Reeve Foundation director Michael Manganiello, in an article in
SCI Life
following Reeve’s death:

The Christopher & Dana Reeve Foundation, as of 2002, includes the Christopher & Dana Reeve Paralysis Resource Center, which provides direct support to people with disabilities through its resource center, makes grants to a wide array of organizations that have to do with programs only for living well with paralysis, publishes a resource book and a series of DVDs on the same array of issues found in this book, and aggressively advocates for disability rights in the US Congress.