Is sex the last frontier to full inclusion for people with disabilities?

Guest Room is a powerful look at an often ignored topic: sex and  individuals with Down syndrome.

 The 13-minute film follows their journey from the bedroom to the moment of truth where Amber takes a pregnancy test. Starring Lauren Potter (from Glee), this award-winning short narrative film focuses on the relationship between a young couple with Down syndrome and the complications that develop after a surprise pregnancy.

As Amy Allison, Executive Director of the Down syndrome Guild recently shared, "People with Down syndrome are not eternal children. They grow, develop and mature into adults who seek out intimacy and sexual relationships. Proper education and support is critically important to ensure healthy sexual expression."

"People with intellectual disabilities desire love, connection, intimacy ...just like the rest of us. They want to experience a full and meaningful life", shared Dr. George Turner. His 2012 research defined a "sexual voice" as a tool that may help people with Down syndrome live a healthier, safer, and less isolated life. Drs. Turner and Meyers will be presenting this research August 18-19, 2016 at the Transgressing Boundaries and the Intersection of Sexualities in Social Work in Olten, Switzlerland . "An inclusive life can not only focus on community living and working, but must integrate social-sexual skills if we are going to help people with Down syndrome and other disabilities navigate the landscape of adulthood," stated, Dr. Turner.

 

Older Adults and Sexuality

The majority of my blog posts focus on how I infuse my professional passion for counseling and sexual health in my personal experience as a parent. Today I shift gears, and I give you a glimpse of some of the work I am doing with older adults on the topic of sexual health. 

In 2007, I embarked on a career that would forever change my life. I began working with older adults in low income housing. My work focused on case management, advocacy, increasing self-sufficiency, and reducing early institutionalization (long term nursing care) of older adults. It was love at first sight! How did I not know how incredibly amazing our older adult generation was until now? Working with older adults was the best decision I ever made. I learned older adults are vibrant, energetic, empowered to learn, and full of wisdom. I wanted to fuse my passion for working with adults throughout my career with my practicum placement at Turner Professional Group, therefor I created a graduate project around these two themes.

Throughout this past year I have developed a psycho-educational group entitled, Sexuality and Aging. It’s like Sex Ed 101 for adults 65+. The intent of this assignment was twofold. The first was to empower older adults to start a conversation, and begin communicating thoughts and concerns about sexuality in a safe environment. The second was to provide educational information on sexually transmitted infections, HIV, and AIDS. It wasn’t easy convincing people to let me, a student, come in and discuss the issue of sexuality and aging. I found a fair amount of resistance, further convincing me that SEX is a dirty word (but shouldn’t be!) and the idea that older adults don’t need to learn about sexuality (but they do!). So, after begging and pleading to some extent, I managed to get my program out into the community through a few trusted colleagues. Together we learned that those in attendance really enjoyed talking about sexuality! With my sex positive attitude, I managed bring comprehensive sex ed to three housing communities for older adults.

Where did I begin you ask? A simple Google search brought me to two very important issues. As I began my research I was quickly thrilled to learn that older adults are still getting jiggy with it! Surveys by AARP and the CDC found that older adults continue to have fulfilling sex lives well into their advanced age! With (and often without) medical intervention and simple accommodations to our changing physiology we can engage and maintain a healthy sex life, almost indefinitely. This lead to equally intriguing research in the incredible spread of sexually transmitted infections with this population. So…from these two fun factoids I gave birth to a brief one hour psycho-education presentation on SEXUALITY and AGING! 

I was over the moon when I walked into my first presentation and we had to bring in more chairs! I was particularly excited to have men enter the equation on my second presentation, and boy did they challenge me! Barking up and down my tree tell me a thing or two about sexuality. What is so incredible about working in the community is that you get the thrill of never know who your audience will be. I had a few very highly educated feminists, members of the LGBTQ community, and ultra conservatives, all from a variety of different cultures. Most of these folks came from a generation that did not receive comprehensive sex education and from an era where you didn’t discuss sex. Our society has created a sex-crazed culture, yet a critically silent approach on sex education. We don’t know what we don’t learn…IT’S A CONUNDRUM!

A large part of the presentation with this population was to break the silence. To empower adults to take their sexuality by the reigns and engage in it. So many of our older adults are already isolated, and silence contributes to AGEISM. Ponrat Pakpreo, the author of Medical Evaluation: Why we take a sex history, discloses low rates of sexual health assessment by physicians and other health care professionals. A variety of barriers are admittedly shared by physicals including: time constraints, underestimation of patient risk, lack of information, and embarrassment. These barriers prevent some clinicians from conducting sexual assessments (Pakpreo, 2013). I found this to be true in each of the presentations I gave with older adults. In a nonscientific experiment (show of hands), the majority shared that their primary physician doesn’t asses their sexual health. They admittedly agreed that they too as patients don’t disclose to or ask questions about their sexual needs with their primary care physicians. Empowering older adults to be their own advocate with their doctors was a crucial message to share. 

Building new perspectives on tolerance and respect to gender roles and stereotypes in this population was also an important message.  We dove into all the circles of sexuality…intimacy, sensuality, sexual health/reproduction, sexualization, and sexual identity (Dailey, 1981). With age, many of these can vary with intensity, however they continue to exist. My favorite part of these talks was hearing the love stories they had to share. Loving and losing was a theme that was shared each and every class. I encourage all of those reading this to engage with a parent, grandparent, or older adult about their love story. Their wisdom is worth its weight in gold. 

Informing facts of STI/HIV…

The presentation sought to inform adults 55+ that they are a high at-risk group for sexuality transmitted infections as well as HIV/AIDS. Data from the Centers for Disease Control state that this age is just as at-risk as young Americans. Older adults ages 55+ make up 19% of the populations living with HIV (Centers for Disease Control, 2013). In addition, sexually transmitted infections (STI’s) are on the rise in adults age 50 and over, 50% in fact (Centers for Disease Control and Prevention, 2013). 

We know that adults 80+ years are sexually active and we know sexually transmitted infections are on the rise! What is happening? I will tell you what’s happening…the baby boomers and beyond are physically active, sexually spirited, and bursting at the seams! Truth: less than 1/3 of the surveyed adults used a condom during their most recent sexual encounter (Schick et al. 2010). We are talking about 80% of sexually active older adults not using protection! Many older adults believe the myth that they are exempt from STI’s is wreaking havoc and must be stopped! A fantastic PSA from safersex4seniors.org, provides a very impactful message to free spirited sexually active older adults. See full PSA at this link: https://youtu.be/1Pfa07ijUCE. 

What I learned…

It was refreshing that I was able to connect current research that tells us that older adults are sexually active, with a unanimous response from my classes that they are also very excited to talk about sex. We are breaking the silence and addressing concerns and issues related to sexuality and answering the health questions and providing resources in order for older adults to get them help them need.

I am happy to report to all my dear readers that despite your age, size, and physical ability, a person’s need for affection, desire, and pleasure extends well into advanced age…to our last breath really. There are hundreds of ways to engage in sex…please remember to increase your safety by using a condom! For help or assistance in safe contraception please contact your doctor or wellness provider. 

Special thank you to Phoenix Family (www.phoenixfamily.org) for their continued support of my work with older adults and allowing me the privilege and trust to present Sexuality and Aging to the following communities: Landmark Towers, Nowlin Hall, and Cathedral Square Towers. 

Citations:

Atlanta: U.S. Department of Health and Human Services; 2013.

Centers for Disease Control and Prevention. Factsheet: HIV among older adults November

2013. Retrieved at www.cdc.gov/hiv

Centers for Disease Control and Prevention. Sexually Transmitted Disease Surveillance 2012.

Dailey, D.M. (1981). Sexual expression and aging in F.J. Berghorn & D.E. Schafer (Eds.). The dynamics of aging: Original essays

on the process and experiences of growing old (pp. 311-330. Boulder, CO; Westview Press.

Fortenberry, J. D. (2010), Sexual Behaviors, Condom Use, and Sexual Health of Americans Over 50: Implications for Sexual

Health Promotion for Older Adults. Journal of Sexual Medicine, 7: 315–329. doi: 10.1111/j.1743-6109.2010.02013.x

Pakpreo, P. (2013, October 1). Medical Education: Why do we take a sex history? Retrieved

November 10, 2014, from http://virtualmentor.ama-assn.org/2005/10/pdf/medu1-0510.pdf
Schick, V., Herbenick, D., Reece, M., Sanders, S. A., Dodge, B., Middlestadt, S. E. and

Sex Positive Parenting... Whats that look like?

"Mom, why do I have a belly button?"; "How can you tell if a girl really likes you?"; "Why cant I wear makeup... all the other girls are doing it?" These are only some of the questions, parents have presented to our sexualy professionals in order to gain some insight and help in responding to their kids. Most parents want to offer sex positive parenting. They want better for their kids than they got regarding sex ed. They just dont know where to start. The above linc provides some examples.

The number one piece of advice we give parents is ...Prepare! And, the second tip, know that the 'birds & the bees' talk is out, you should be engaging in multiple, teachable moments that are age-appropriate throughout a childs development. Parents often get a glazed look in their eyes at this point, quickly followed by a look of terror. The great news is that our sexualty professionals can help and there are numerous tools to make it that much easier. You first need to acknowledge that you could benefit from expert guidance and next you need to take action. We tell parents, you might be a really good golf player, but who wouldnt take Tiger Woods up on some tips. We seek professional support in so many areas of our life, why not in preparing a sex education plan for your kids?

Our sexuality experts routinely meet with parents to help them develop sex positive messages for their kids. This is sometimes a one-time consultation, but most often parents find our coaching useful at numerous stages of their education with their kids. Sometime parents need in-depth help to strategize a comprhensive plan, but other time they just have quick question. So depending on the age of your child, your values, and your comfort level with the topic we will customize an approach. "Its Perfectly Normal" is a book in a series of great books to aide parents, by Robie Harris  

Parents want and need coaching in this area because most of us got little, no, or really myth-filled sex ed. We want better for our kids. We want them to be informed, sexually literate and responsible sexual people who take pride in their bodies. We want them to be great partners who can say "no" and not be shackled with shame messages.

George & Lisa present on Sexuality and Disability AAIDD Conference

George Turner, Lisa Meyers, Mary Rita Weller
AAIDD Conference 2014, Orlando Fl.

Local disability experts, Dr. George Turner and Lisa Meyers of Turner Professional Group, spoke on Sexuality and Disability at the 138^th American Association on Intellectual and Developmental Disabilities (AAIDD) conference held in Orlando Fl. They partnered with a colleague, Dr. Mary Rita Weller, to present a paper entitled, “Taboo & Overlooked – Sexuality and Intellectual Disability: A Call for Better Research, Therapy & Education”.  Over fifty disabilty professionals attended including academics, direct service professionals, and administration,  as well as self advocates and parents.

Since 1876, AAIDD has been providing worldwide leadership in the field of intellectual and developmental disabilities. AAIDD, (formerly AAMR -- American Association on Mental Retardation) is the oldest and largest interdisciplinary organization of professionals and citizens concerned about intellectual and developmental disabilities.

The three-tiered presentation shared with participants the experiences of three disability professionals who also have the unique vantage point of being licensed social workers involved in research, therapy and education around sexuality and persons with intellectual disability. Dr. Turner shared, “With over 50 professionals from disability services and disability studies, our presentation has implications to bring a positive light on sexuality and people with intellectual disabilities. As professionals we need to listen to what our clients and consumers are saying about their social-sexual needs, desires and hopes. They cannot afford us to put our heads in the sand.”

Lisa Meyers speaking about her clinical
work with people with ID.
AAIDD Conference 2014

While Dr. Turner focused on encouraging more research in this area, Dr. Weller spoke on education and Lisa Meyers discussed clinical psychotherapy with this group. Ms. Meyers highlighted that, “the challenge is to find trained mental health professionals who are also familiar in working with people with disabilities. It’s rare to have this kind of expert available to people with intellectual disabilities. So while there are numerous psychotherapists in the community they often do not understand the nuances of differing communication patterns of someone with a disability or they unknowingly discount the possibility of them being sexual.” Dr. Turner added, “People with ID want and need human connectivity, just like the rest of us. The problem is access and a system that does not support their need for romance, sex, or risk taking. We hoped to dispel stereotypical portrayal of disability and sexuality and encourage professionals to bridge this service delivery gap.”

George and Lisa met Charles Archer, the AAIDD Chair of the Special Interest Group on Sexuality,  and got to network with other colleagues in the field. "Maintaining a connection to professional colleagues and giving back to the field through conference presentations is an important way for TPG to be relevant. As leaders in the field of disabilities, we strongly believe in cultivating learning and moving the field forward to providing better support and services", shared Lisa.