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Sex education and sexual interest don’t end at a certain age. Melanie Ramey is here not only to debunk myths about sexuality, sexual involvement, and connection later in life but to shed light on sexual information for all ages. This podcast will answer the questions that were never properly answered in health class and address the sex information we need but are too reluctant to discuss. Join Melanie for frank discussions about bodies, sexual health, desire, and age, with honesty and humor.
Narrator: [00:00:06] The human need for intimacy is no different for the disabled than it is for anybody else. Yet society has not treated people with special needs appropriately in this regard, be it for stigma, ignorance or disinterest. Well, it's way past time to safeguard the rights of the disabled by getting these issues on the table. Welcome to the Sexually Speaking podcast with sex educator and therapist Melanie Ramey.
Melanie Ramey: [00:00:35] Hello and welcome. If you have been listening to these podcasts, you know that we believe and that we know that we are all sexual beings from the day we're born until the day we die. And that includes everyone. And that includes people with disabilities. They are created as sexual beings, just like the rest of us who may not have a disability. I want to begin today to talk with you about this whole issue, because I think a lot of people are unfamiliar with the manner in which people with disabilities have been treated historically. And I think it's really important to have the context, because actually, until the early 70s, late 70s, if parents with a child who had a physical or a perceived intellectual disability, they were recommended by physicians to place the child in an institution and forget about them. Now, these institutions were often state hospitals that had actually been built for people who were alleged to be mentally ill or insane or whatever. Occasionally states had some kind of facility just for children, but they are the same kind of situation where people were just put and forgotten about. In the late 60s, a deinstitutionalization movement started in this country, and this was the idea that people with mental illnesses or mental problems could be treated in the community. Now, this came about because at the same time, or as a consequence of some research, of course, some medications had been developed that could control some of the mental difficulties that people had and so they could receive medications and live in the community.
Melanie Ramey: [00:02:46] The situation was that people who had been in these hospitals for years were suddenly discharged to families, and the families had no idea of what to do. I will never forget a very, very upset client who came to see me, the agency where I worked as a social worker. He had been informed about a week before that his mother, who had lived in the state hospital for 40 years, was being discharged in about a week and that he, as her only child, would be responsible for her. She had been hospitalized shortly after his birth, and through the years, as he grew older, his father told him about her and he visited her in the hospital. After his father died, he continued visiting, however he had married and had two children, but he had never told his wife or his children that his mother was alive, and this was because the stigma about mental illness was so strong that he was afraid that they would think he might become mentally ill, or that he would pass some kind of mental illness onto them, so he never told them. I will never forget visiting his mother in the state hospital where she had lived for 40 years, and together we read her medical record.
Melanie Ramey: [00:04:19] And the truth was, she had what we now know as postpartum depression after he was born. And at that time it was thought that she was going crazy, and so the doctor advised her husband to put her in the state hospital, which he did. And there she stayed for 40 years. She was a very pleasant, a very compliant woman who was in her early 70s by then. I saw literally hundreds of persons there in that state Hospital, who had been put there and forgotten and were now suddenly going to be sent out of the hospital. She, I think, was one of the few who still had family that had continued to be with her or to come and visit with her. I managed for her to be transferred directly to the Jewish Center for the aged, where she lived for several more years. After this was accomplished, the client, his wife and his two children came into my office because he wanted to tell them about his mother, but he wanted to do it if I was present, so I could maybe help answer some of their questions. Well, they were shocked, as you can imagine, and they had many questions about what the situation was and so forth. And I think that she was really one of the few that had a good ending to her situation, because the daughter in law and the two daughters got to know her, and they visited with her, and they took her to their home for special occasions. And it was just really one of the classic examples of how the people with disabilities, perceived mental problems were treated until just recently. That's only been since the 70s that people were actually let out of mental hospitals.
Melanie Ramey: [00:06:25] Now, sometimes states would build a facility, maybe just for children with disabilities, and they were very similar to the state hospitals, only they just held children. Some of you can probably remember in the early 80s, Geraldo Rivera, the TV reporter, did an exposé of the Willowbrook School on Long Island, New York. People were horrified. This was a place built for children, for 4000 children, but 6000 children were living there. It was greatly understaffed, and they had been left in their beds for sometimes even years in their own human waste. It was an absolute snakepit, as it was described. Well, as you can imagine, a big investigation ensued. And this, of course, raised the question about similar places around the country where children with disabilities had been placed and forgotten. At the same time, the civil rights movement had begun in the United States, and so it sort of broadened itself to include disability rights. But it wasn't until 19 and 90 that there was a law to give people with disabilities the same kind of right.
Melanie Ramey: [00:07:57] And this is the American with Disabilities Act, and it was signed into law in 1990. And this was signed into law after great, great difficulty. A number of people with physical disabilities, particularly, were at the University of California in Berkeley and also living in that area. They began working on trying to get this law, and they worked for 2 or 3 years, and they had sit ins in the office of, the Federal Office of Human Services and to no avail. And so then they decided they needed to go to Washington to actually lobby Congress. And so they went to Washington from all over the country. Hundreds of people in wheelchairs and so forth, showed up at the Capitol and in the rotunda and began to talk with members of Congress and begin to push to get this act signed. Well, at that time, a man named Joseph Califano was the director of Health and Human Services, and he would not meet with them. So they developed the idea that they would go and actually picket his house. And they went early one morning because they thought they would see him as he was leaving his house to go to his office, and he would not come out and meet with them at that point. In fact, he ran out the back door and escaped out the back way somehow so that he could avoid these people with disabilities.But they persisted, and it certainly did not leave him looking as a shining example for human rights. But in any event, they finally, finally were able to get the support they needed to get it signed into law. So that's really only been 35 years that we have actually accepted people with disabilities having full human rights and to understand them as full sexual human beings is a whole matter entirely.
Melanie Ramey: [00:10:06] I want to tell you that the American College of Obstetricians and Gynecologists has now recommended that people with disabilities have regular screenings for breast cancer, cervical cancer, prostate cancer, and sexually transmitted diseases because they are just as likely to need care for these diseases as people without disabilities. And so sexual health is important for everyone, and this is a whole other idea that we have had to understand better than we ever understood it before. But unfortunately, many families, caregivers and the public at large assumed that because a person has a disability, they actually have no interest in anything sexual or any need for sexual health or any sexual relationships. And this is simply not true. And the interesting thing is that I've had many times experience of lobbying legislatures about policy issues. And one of the points I always make with them, as they are thinking about some law or some rule to make life more difficult for people with disabilities, that it doesn't take much for a person to become disabled.
Melanie Ramey: [00:11:40] One car accident, one injury in battle, a major sports injury or some genetic anomaly that pops up to say nothing of the fact that some people are born with neurological and other diseases that affect them from birth. So making laws that don't help people with disabilities can actually come back to bite you, simply because you may one day find yourself in the same position. Any policy or law that can make life more challenging for people with disabilities is just beyond my understanding. And we've recently seen this in different places in terms of voting, where they have tried to make laws making it more difficult for people with disabilities to cast their votes. And yet, you know, they should be making it easier because they have the right to vote just like anybody else. If you listen to podcast two, you would have heard a discussion of how to teach children the correct words for the parts of their bodies. This is even more essential for children with special needs. Often, children with special needs, especially those with physical disabilities, receive hands on care from caregivers, from teachers, and from therapists. In order to have the concept of body autonomy, anyone should always ask the consent of the child before offering any kind of physical support. So body autonomy is just the idea that the individual gets to make decisions about what happens to their body, who touches them, when and where.
Melanie Ramey: [00:13:38] Body autonomy is a powerful concept that includes a child being able to say no if they do not want to be touched, and it forces people to ask the consent before touching a person with disabilities. The younger children can be taught that they have body autonomy the better, because people with disabilities are often regarded as asexual. They are often not given information about their bodies, about sexuality and appropriate relationship information, and that is particularly valuable that they have it. People with disabilities are victimized three times more than persons without disabilities. Teaching body autonomy and comprehensive sex education gives people with disabilities the language and the tools to reject and report inappropriate sexual encounters. I will put on the Facebook page some references of the work of the Watson Institute on this topic. In 2019, NPR did an in-depth investigation into sexual assault issue as it relates to people with disabilities. Titled, quote, The Sexual Assault Epidemic Nobody Talks About, end quote. They looked at data from the Department of Justice, national crime data that is usually not reported to the public. It revealed that people with intellectual disabilities are sexually assaulted seven times more than persons without intellectual disability. For women with intellectual disabilities, it is about 12 times the amount for persons without intellectual disabilities.
Melanie Ramey: [00:15:58] The data revealed that people with intellectual disabilities are at risk all of the time because they can be assaulted by someone, maybe, who is caring for them or who has contact with them during daytime hours. They are targeted because people know that they can be easily manipulated, and that they would have difficulty testifying in court at a later time. These kinds of assaults get unrecognized, unreported, and unprosecuted. And so the perpetrators are free to abuse again. Police and prosecutors are very reluctant to take these cases because they know they are difficult to win in court. For young people with disabilities going to college, there's a special need for families to conduct an in-depth research project on each institution under consideration to determine if, in fact, they have strong sexual abuse prevention policies, if they have resources, and if they have accommodations that are appropriate and accessible to people who need accommodations. These policies and accommodations need to exist more than the minimal ones that are required under the ADA. It is also really important to keep in touch with a disabled family member who is in an on-campus situation. We particularly need to check and see if they feel safe, if they're feeling safe, if they've had any kind of sexual harassment. It's also interesting that the United States Department of Justice has collected disability data, but they don't make this known to the public.
Melanie Ramey: [00:18:10] And so they do what's called campus climate surveys. And sometimes they've included that as a demographic, sometimes they haven't. But when they have included it, they haven't reported the findings. Primarily because of that, in 2019, the American Association of Universities did a large study of about 200,000 students across about 37 universities that included disability as a demographic. They reported that 1 in 3 undergraduate females reported a non-consensual sexual contact, as compared with 1 in 5 undergraduate females who were not disabled. Many college campuses do not have health service staff trained in the interviewing of a disabled student about a sexual experience, or how to take a good sexual history of a person with disability. In many instances, it turns out to be the roommate of a disabled person or friends who are the most help and support. And this of course, can include accompanying a disabled person to the health service or to the ER room. Sometimes people with a disability have trouble communicating easily, and so other people who are familiar with their communication patterns come along and help with that. But medical providers need to understand, too, that in working with a person with a disability, it usually takes more time, and it takes patience because of their inability sometimes to rapidly and to quickly explain what has happened. The health service should be sure that they have equipment that is accessible when they're going to do an examination, and they also should have some adaptive aids that may be needed as they do examinations.
Melanie Ramey: [00:20:38] A lot of examining tables are too tall for a lot of people with disabilities to get on, but there are those that are available that do have adjustments. And so all university health services should have that because they all have students with disabilities. You know, it's been an interesting thing that instead of trying to understand the sexual health needs of people with disabilities, the default position has always been sterilization. This was most often what parents who had a child with a disability, whatever it was, physical or perhaps developmental, that they should have the child sterilized. But what people actually need at any age if they're disabled is good, appropriate sex education. People with disabilities think about sex and having sex whether or not their parents, guardians, or the society as a whole are comfortable with this or not. Now, I really would like to ask you, if you think of someone you know who might benefit from having this information, that you would call this podcast to their attention because we very, very much need the society as a whole to have a much better understanding of people with disabilities and their physical and sexual needs, and to understand that they are sexual human beings. Until next time, be well.
Narrator: [00:22:23] You've been listening to Sexually Speaking with sex educator and therapist Melanie Ramey. Please visit us on Facebook, Instagram, and LinkedIn.