I first heard of Dr. Tepper when seeking experts to provide information for the groundbreaking exhibit “A Paralyzed Life” for PhotoAbility.net. One of the issues being addressed via the photo juxtaposition was the preconceived notions most have about disability and sex. Voila! In comes Dr. Tepper referred by good friend Stephen Feldman of New York. See Stephen’s feature, Thou Shalt Never Again, on his road to Fertility.
Dr. Tepper was very kind to respond and give me some vital statistics and information regarding the issue:
Sex has traditionally been portrayed as a privilege of the white, heterosexual, young, single and non-disabled. Sexuality as a source of pleasure and as an expression of love is not readily recognized for populations that have been traditionally marginalized in society. Sexual portrayals of people who are older, who are larger, who are darker, who are gayer, who are mentally or physically disabled, or who just do not fit the targeted market profile have been conspicuously absent in mainstream media. The issue of sexual pleasure in people with disabilities was stunningly silent until the recent releases of The Sessions, The Intouchables, Come as You Are, and Rust and Bone. Still the under representation of the intimate sexual lives of people with disabilities has led to romantic isolation and loneliness due to misconceptions and bias as to our sexuality and partnership potential.
For both Dr. Tepper and I, it all started in a place we share in common, The Rusk Institute in New York City. We both shared the memories of healing, drinking and finding ourselves again on the rooftop overlooking the east River. Mine was in 1985, his in 1982. I spent six and he seven months in our spinal cord injury rehabilitation. All these years later, we found we shared this indelible memory of the space and time that has been the foundation of our new journeys into the world of being, well… in the minority of the disability community.
Since then, his resume has been pretty comprehensive, focused and impressive in how he followed his intuition, and inner voice to travel a path that is as much non-conformist as it is “inspirational.” Or maybe it is inspirational to me as it is conversely as unconventional and ignored as it is valuable.
Some of the highlights that I found to be most helpful in the contributions to the field of study he has made in his career include:
- For his Master’s thesis in Public Health he conducted a national survey of members of the National Spinal Cord Injury Association. The results indicated that ½ of the respondents received no sexual education or counseling and for those who did, ½ said that the limited information received didn’t meet their needs. It was this finding that inspired him to go on and get his Ph.D. in Human Sexuality where he focused his research on the study of pleasure and orgasm in people with SCI; to launch SexualHealth.com in 1996, to pen the groundbreaking column “Love Bites” for New Mobility magazine that ran for 10 years (A compilation of the best of Love Bites can be accessed here: http://www.newmobility.com/2005/02/love-bites-smorgasbord/ ); and to produce sensible and practical video guides that leave nothing to the imagination on exactly HOW those with paralysis can and do still achieve a good healthy romp in the bedroom.
YouTube took down the Sexual Positions for Women with Paralysis and the Vibrations to Increase Sensations videos, which is a clear double standard as they allow able bodied sexual instruction videos. Apparently, a disabled woman makes the position video offensive since they left the Sexual Positions for Men with Paralysis up. But don’t despair, he reposted them to Vimeo and you can access them through his personal site, mitchelltepper.com.
- Dr. Tepper disseminates the word on sexuality and disability all over the world including in-person trips to Canada, France, Sweden, Israel, Australia, and the First International Congress on Lifespan Sexuality Education in Hyderabad, India. He provides sex coaching via telephone and the Internet to people with spinal injuries and other disabilities via MitchellTepper.com.
- Over a three year period he worked with Paralyzed Veterans of America as a member of their Consortium for Spinal Cord Medicine, a distinguished group of 23 healthcare professionals, payer and consumer organizations, whose mission is centered on creating evidence-based clinical practice guidelines (CPGs). CPGs are recommendations to healthcare providers based on current research findings that expert methodologists have graded for their scientific strength and validity. Together they produced two guides, one for the Medical Profession: Sexuality and Reproductive Health in Adults with Spinal Cord Injury: A Clinical Practice Guideline, and one for the Consumers: Sexuality and Reproductive Health for Adults with Spinal Cord Injury: What You Should Know: A Consumer Guide.
- What started as research and education around sexuality and spinal cord injury expanded to include all serious injuries, illnesses, and disabilities. In 2006 he was invited to speak and to provide workshops on sex and intimate relationships at the Coalition to Salute America’s Heroes Road to Recovery Conference for seriously combat-injured service members and their intimate partners. Since that profoundly moving experience, he has dedicated much of his career to this sector.
- In 2008, while working for the Satcher Health Leadership Institute at Morehouse School of Medicine, he convened a conference in Washington, DC, Wounded Troops and Partners: Supporting Intimate Relationships. The conference was intended to get sexual health for people with war related physical injuries and/or psychological health issues on the national radar. Subsequently, he has worked with both the VA and the DOD to develop sexuality and relationship interventions for their patient populations. Most recently he has been working with the Sexual Health and Intimacy Workgroup at Walter Reed National Military Medical Center providing consultation and staff education and training in a course he developed, Providing Comprehensive Sexual Health Care for Wounded Warriors.
- Dr. Tepper does much of his work with wounded warriors pro bono because there is not adequate funding budgeted for this most fundamental aspect of people’s lives. An entrepreneur at heart, he is planning a crowdfunding campaign to support his latest initiative, Making Love after Making War. Loveafterwar will tell the story of couples who managed to stay connected emotionally and physically despite tremendous losses through a documentary, and offer support for those who are still struggling via a companion website.
Stay tuned for more on this in future features here on PushLiving.com
Well, it is time to end the silence. The Doctor is IN, and he is taking questions:
What is your audience mostly consisting of? Baby boomers? SCI, Elderly?
The insights I gained into pleasure and orgasm from my personal and professional research is beginning to cross over to people without disabilities who are looking for more out of their sexual relationships. In my coaching practice I have helped people with various, sometimes rare, disabilities.
What are some of the most important aspects of a healthy sexual relationship? Emotional depth? Vulnerability?
I think the most important aspects of a healthy sexual relationship are trust, safety (emotional and physical) and a sense of connectedness, all of which I expand on in my forthcoming book, Regain that Feeling: Secrets to Sexual Self-Discovery. Then I would add creativity, adaptability, and a sense of humor.
What percentage can achieve orgasm? General population vs. SCI.
I try to avoid answering questions about percentages. They are good for describing the overall picture but are not that useful to an individual. If a client came to me and said I haven’t experienced an orgasm since my injury, and I responded to that only about 50% of people with spinal cord injuries experience orgasm, how helpful is that? They might assume they are not one of the 50%. However with education and learning new ways to access pleasure, they may be able to relearn orgasm..
Is an orgasm necessary for a fulfilled sexual relationship?
The standard answer is no. However, it depends on how important it is to the individual or to their partner. If orgasm was a regular and cherished part of your sexual experience, you might feel fulfilled at first. Likewise, you might feel fulfilled but your partner may feel selfish if they are experiencing an orgasm and you’re not. Pleasure and orgasm after spinal cord injury is the result of a process of sexual self-discovery takes many people a lifetime to figure out without guidance.
What about Love? Necessary? Optimal? Sustainable?
Love is such a multifaceted word. It can be an emotion or an action. Some people fuse love and sex well, while others are quite split, as in whom they love and who turns them on sexually can be mutually exclusive. If we’re talking about a healthy long-term relationship, I’d say respect for individuality and uniqueness is more reliable than love.
We currently have a series on online dating with Woman with Disabilities. What type of partners do we as SCI attract? Do Studies show a profile?
I think people with spinal cord injuries attract all types of partners. The assumption may be that we only attract caretakers and devotees or people who idealize us for being so strong or independent. However, I don’t think a broad survey of partners would support those assumptions. I know in my case; my wife wasn’t interested in being a caretaker when she met me, nor did she give me extra credit for living well in a chair.
How is real intimacy achieved?
Real intimacy is achieved when you are able to reveal to your partner those aspects of yourself that you are not so proud of. Many people withhold sharing details that they are afraid would scare their partners away. This can be the source of continued loneliness despite constant companionship and sex.
How is fear of loss and self-esteem addressed for those with SCI?
If you’re asking how is fear of loss of a partner you had before your injury addressed, I would first say by recognizing it’s a possibility. Next I would say that your fear needs to be verbalized to your partner. Their response may alleviate your fear or may confirm your concern that they’re not interested in maintaining a relationship.
What can a partner do to help the other to feel more desirable?
I think the number one thing a partner can do to help the other feel more desirable is to pay sexual attention to them. That doesn’t just mean initiating sex; it means touching them in a loving way, kissing them passionately, flirting with them, and sharing with them what you find sexy about them.
Sex occurs one way pre-injury. Now it is different. How do both partners adjust? How do you deal with the expectations of what is “normal?”
A common sentiment I hear from people after their injuries is that sex is not the same, not normal anymore. What’s normal for people is relative to what was normal for them before they crashed their car, got shot, or fell off a cliff. The sad news is that both partners don’t always adjust. Sometimes a person with a spinal injury has an experience with himself or herself or a partner that makes them come to the conclusion that sex is pointless, why bother, and they give up. Sometimes a partner leaves, avoids sex or finds sex somewhere else. These live experiences are often very difficult to get by without support from others who have been there and eventually came out whole or professional support. If both partners are committed to continuing their sexual relationship, then adjustment happens over time with education and experimentation. That’s why you always hear me talking or writing about sexual self-discovery.
Dr. Tepper has been married 28 years to his wife Cheryl, and they have one son Jeremy, who just turned 18. Dr. Tepper’s new book, Regain that Feeling: Secrets to Sexual Self-Discovery shared by People with Spinal Cord Injuries, will soon be available on Amazon.com in multiple formats. Regain that Feeling offers profound insights on the importance of trust, safety, and connectedness to pleasure and orgasm for everyone.
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