Cerebral Palsy and the Challenges of Sexual Expression

By Daniel Rubin-Marx, SIECUS Research Intern 
 
Source:
Diana Wiegerink et al, “Sexuality of Young Adults with Cerebral Palsy: Experienced Limitations and Needs,” Sexuality and Disability (October 2010).
 
Description:
This Dutch study’s main objective was to identify the most significant obstacles that people living with Cerebral Palsy (CP) face in expressing their sexuality.  Four years after an initial CP study, 74 participants aged 20-24 participated in questionnaires and interviews about sexual desire, past sexual experience, and perception of their bodies.
 
Key Findings:
  • 20% of the participants had no past sexual experience with a partner.
  • 80% indicated that their physical limitations created some obstacles during sexual activity, including spasticity, urinary incontinence, paralysis, and numbness.
  • Although 78% of the participants reported feeling sexual arousal, only two-thirds of the group had ever experienced orgasm. [1]
 
Analysis:
Cerebral Palsy is one of the more common physical disabilities in the U.S., affecting 1.5 to 2.5 infants out of 1000 live births.  This study contributes to better understanding of CP and sexuality, a subject not often discussed: 90% of the Dutch study participants reported that they had never been asked about their sexuality during rehabilitation periods.  By inviting people living with CP to talk about the very subjects their medical providers often fail to ask about, the researchers identified several variables that can influence a CP patient’s sexual well-being. Among these variables are gender, motivation for sexual expression, amount of energy, and self-confidence.
 
For some young people, living with CP can mean experiencing adolescent sexual development in ways not anticipated by widely cited three-stage models of adolescent development (which typically divide adolescence into early, middle, and late stages with predictable biological, psychological, and social markers). Because many youth living with CP are dependent on parents or other adult caregivers to manage routine activities of daily living, they often find that establishing long-term, intimate relationships is more challenging than for other youth.
 
The Dutch study revealed that sexual shame is a feeling often experienced, but rarely discussed, among a noteworthy percentage of respondents. According to the researchers, 19% of the respondents said they lacked self-confidence, 15% said they were ashamed of their own body, and 9% were embarrassed by physical scars caused by injury from spastic movements or falls. Several respondents noted that when one is dependent on an adult caregiver to be placed on a bed in preparation for sleep, it can be a source of shame and inhibition to imagine requiring such assistance as a prelude to a sexual experience with a partner.
 
Future research could address ways that technology can improve quality of life for people living with CP:  what medications or equipment could be further developed to support their sexual autonomy?  Researchers could also explore in greater depth the differences between U.S. and Dutch sexuality education regarding CP and other physical disabilities. 

 

[1] Wiegerink D, et al (2010). ‘Sexuality of Young Adults with Cerebral Palsy: Experienced Limitations and Needs,’ Sexuality and Disability 29(2): 119-128.

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