Reprint of Interview with Dr. Mitch Tepper, Founder of The Sexual Health Network and SexualHealth.com
Will Spence (originally published March 2002)
Frequently sexuality can be overlooked and not taken into consideration when it comes to people with disabilities. Thankfully there are a growing number of groups dedicated to bringing more attention and awareness to the forefront of society concerning sexuality and its relationship to those with disabilities. Duxtra had the chance to interview the founder of one of these groups.
Mitch Tepper is the founder of the Sexual Health Network and the website SexualHealth.com. Both are dedicated to providing easy access to sexuality information, education, mutual support, counseling, therapy, healthcare, products and other resources for people with disabilities, illness, or natural changes throughout the lifecycle and those who love them or care for them. Its mission is to end the silence about societal attitudes toward sexuality and misconceptions about sexuality as it relates to disabled people. The Sexual Health Network provides regularly updated content and is a tremendous resource for many people with disabilities. What makes this site even more impressive is the large number of people who volunteer their time and expertise in numerous areas of sexuality and disability related topics.
Duxtra had the opportunity to interview Mitch about the Sexual Health Network and his thoughts on sexuality and its impact on people with disabilities. This in-depth interview covers many areas including the creation of the Sexual Health Network, promoting more awareness about sexuality and disability, and how attitudes and views are beginning to change.
Mitch Tepper, Sexual Health Network
Who are you? Location, age, profession, interests, etc.
Who am I? I am that I am. My given name is Mitchell Steven Tepper. Most of my friends and family call me Mitch, some people call me Dr. Tepper, and one person calls me dad. I was born and raised in Connecticut, and except for going to school in Rhode Island and Pennsylvania, I have lived here for 40 years. My chosen profession is sexologist but some call me the Prophet of Pleasure “cause I speak of the pompatus of love” (from Steve Miller in The Joker), which to me means connection, pleasure and orgasm. I have a master's in public health and a Ph.D. in sexuality education. My interests include sex, religion, family, rights, and the Internet as a means of expression. I guess you can say my primary interest is in human relating. I am married sixteen years and we have a son who will be seven years old in August.
Mitch would you mind giving our viewers a brief description of your disability?
Sure but I would rather describe what I can and cannot do. I can stand and walk short distances with crutches, but I primarily use wheelchairs, manual and power, to get around. I have "gross motor function" in my left hand that serves me quite well and wrist flexion but no grasp in my right hand. I wear a leg bag by day and take medicine at night to control my bladder. I'm not sure anyone cares to hear about my bowel routine. In addition to having a cervical spinal cord injury for 20 years, I have lived with Crohn's disease, one of the many diagnoses within the irritable bowel diseases, my whole life. I can manage dressing, feeding, and most of the activities of daily living on my own but I hire a home health/personal care attendant for 12 to 15 hours per week to preserve my energy for other activities.
You're the founder of SexualHealth.com, a website dedicated to providing easy access to sexuality information, education, mutual support, counseling, therapy, healthcare, products and other resources for people with disabilities. What inspired you to start this website?
I was working on a Ph.D. in human sexuality education, and focusing my research and teaching on sex and disabilities. Everyone used to congratulate me and say that there was no information in this area. Of course there was, but it was buried in libraries and old books. When I discovered the Internet in 1995, I was moved by the power to disseminate sexuality information on a global basis with minimal overhead, assuming you deduct the cost of my Ph.D. and all the years that I invested into the site.
What's the history of the Sexual Health Network? Where did it all begin? And how long did it take you to get the website to the point it's at today?
I founded the Sexual Health Network and launched sexualhealth.com in 1996. My mission was to end the silence around issues of sexuality, disability, and other medically related conditions. The mission has expanded to ending the silence around sexuality related issues in general. The broadening of the mission was in response to demand and made possible by the nearly 50 sexual health professionals representing the full spectrum of human sexuality who volunteer to answer questions on the site. I didn't know anything about HTML and couldn't afford to hire a web developer, but my wife turned me onto FrontPage and I develop the site of my own. In 1999 I received a small grant from the Bureau of Rehabilitation Services in Connecticut to hire a web development company to redesign the site and build backend databases and remote publishing capabilities needed to keep up with the growth in traffic and volunteers.
How closely did your own disability influence your desire to promote more awareness concerning disability and sexuality related topics?
Very closely. I was working on a degree in finance when I broke my neck. I finished that degree after a year of rehabilitation and went on to work in banking. My questions regarding sexuality and potential for future relationships were not fully addressed in rehab. Fortunately, I was adept at finding information on my own through various sources and practice. As I became more involved in disability related issues I drifted away from banking and toward improving the plight of people with disabilities. The ability to talk comfortably about sexuality is one of my gifts. I felt it important to share this gift with the disability community, as we desperately needed more discussion in this area.
What sets your website apart from other online disability and sexuality publications?
I don’t make any claims about my site with respect to other online disability and sexuality publications. There is plenty of room to hear different voices from the community. Sites that come to mind are PeopleNet DisAbility DateNet, bentvoices, Gimpgirl, and disabledsex, which has a very active discussion group. For dating there is dateable. Each has their strengths. Sexualhealth.com is unique in that the majority of content on the site is generated by sexual health professionals responding to questions asked from visitors. Our professionals represent the full spectrum of sexuality. Years ago, the great majority of the experts were people with disabilities who held advanced degrees in some aspect of sexuality, whether they were psychologists, sex therapists, educators, researchers, or MDs. Now, because of the growth and general demand, the number of non-disabled professionals now exceeds those with disabilities. However, people with disabilities need access to general sex information in addition to disability specific information so I don’t see a conflict here.
One aspect that most impressed me about your website was the large amount of experts willing to volunteer their time. How have you been able to get such a vast and diverse group of experts specializing in such a wide range of disability and sexuality related disciplines to volunteer their services?
Network, network, network! I join organizations, I go to meetings, I speak around the country, I write for academic and consumer focused publications, I volunteer, I accept leadership roles, I talk about what I do and the mission behind it. People identify with the mission and want to help out. The majority of the people on the site came to me and asked how they could get involved.
Can anyone submit a disability and sexuality related questions? How should they do so?
Yes, no, and it depends. This is a difficult question for me to answer right now. The demand for information, education, and counseling is outstripping the number of volunteer hours our experts can give. People can submit a question when there is an “ask a question” link under the picture of the expert they would like to respond. If there is no link to "ask a question" directly under their picture on their page, it means their mailbox is full. Each expert sets their mailbox limit to a manageable level so as to avoid taking 100's of questions that would be impossible to answer. We don't want people to have to go through the trouble of submitting information with little chance of getting an answer. People do find ways to send in their questions via feedback, contact us, or webmaster but we don’t guarantee a response. I see most of the unsolicited questions that come in and triage them. Some get answered and some don’t. I do give priority to people with disabilities because this is the highest and best use of my professional expertise. We encourage everyone to take a look at the individual expert's archives and love bites to see if a similar question was answered, to use our search function as there are 100's of question and answers in our database, or to start a discussion in one of our forums.
How have the advancements in technology and medicine opened up new gateways for people with disabilities when it comes to sexuality?
This question presupposes that advancements in technology and medicine has opened up new gateways for people with disabilities when it comes to sexuality. They have, but in a limited way. First technology, specifically the Internet and the various adaptive equipment used to access computers to get on Internet, has provided greater opportunities to meet other people with and without disabilities, and to share similar experiences amongst people with the same or other disabilities. Medicine has given us Viagra, but there were already other reliable methods for men to get an erection who needed help. Advances in assisted reproductive technology increased the chance of conceiving in delivering for some. However, technology and medicine does not hold the key to opening the gateways. There are economic, social, cultural, political, and architectural considerations also. Sexuality still depends on people's actions, decisions, and ability to enter into intimate relationships, and to maintain the dialogue within those relationships.
How has the psychological approach to assisting disabled people with sexuality related problems shifted in say the last twenty years? To what do you attribute this shift?
What psychological approach? I am not aware of any psychological theories or treatment protocols for assisting disabled people with sexuality related problems. I have a curriculum, “Providing Comprehensive Sexual Health Care in Spinal Cord Injury Rehabilitation: Continuing Education and Training for Health Professionals," that teaches practitioners how to address sexual issues for people with spinal cord injuries and other disabilities. It stems more from an educational approach, not a psychological one. The only model that has been consistently applied to people with disabilities and works quite well is Jack Annon's PLISSIT model, which stands for permission, limited information, specific suggestions, and intense therapy. Most providers can learn to give permission, information, and specific suggestions, and to recognize when they have to refer someone for intense therapy or specialized medical evaluation. The majority of problems are solved without needing intense therapy.
How can friends, families, and professionals provide more comforting and inviting environments for people with disabilities to talk about sexuality related concerns?
First stop ignoring the elephant at the table. Friends, families, and professionals have to welcome discussions about sex and relationships. Families of younger people with disabilities need to ask questions of schools as to what sexuality education will be provided for their children. Most likely they will have to augment this with teaching at home and possibly follow up conversations with a primary-care physician or specialist. Friends, families, and professionals can all follow the PLISSIT model briefly described above. However, the person with a disability need not wait until those around them are comfortable or extend an invitation, as this can take forever. If we want to reclaim our sexuality, we have to be proactive in searching out information, education, and services we require.
What has been the most rewarding experience from the time and effort you have spent on the development of the Sexual Health Network?
When people send me pictures of their babies after reading my article, Making Babies: Vibro Stimulation and at-home insemination, and e-mailing me questions. When I meet people in person, here and outside the country, and they tell how much help I was to them when I responded to their e-mail.
What future plans are in store for the Sexual Health Network?
I hope to build closer affiliations with companies whose missions complement ours. We recently introduced a products page and an option to contact experts for advice by telephone for a fee. I'm also in the process of starting up a nonprofit to facilitate the development of curriculum for teenagers and young adults with disabilities.
Mitch, thank you for your willingness to partake in this interview. Is there anything else you would like to add?
Just thank you for including me among such prestigious colleagues on your web site like Barry Corbett and Gary Karp. It is important for all of us to share our stories and to help each other in our quest for sexual freedom and expression.