Sexual rights are innate rights. But too often people with intellectual and developmental disabilities (I/DD) are unable to pursue sexual relationships, mainly because stereotypes deem them asexual or too deviant. As a pioneer in promoting sexual rights, YAI trains organizations nationally and globally to foster a safe and accessible approach to sexual health for this marginalized community.
“Not everyone can handle seeing people with disabilities as sexual creatures,” said Steven Holden. The 43-year-old self advocate has been receiving YAI services since 2001. Holden has been in a relationship with his girlfriend for five months. “I think there needs to be more awareness that we can have these relationships but just need support and guidance on how to properly do it.”
In the United States alone, an average of 59,000 adults with disabilities are raped or sexually assaulted every year, according to the latest data from the National Crime Victimization Survey. It is estimated that about half of all adults with cognitive disabilities will experience 10 or more sexually abusive incidents in their lifetime. As alarming as these statistics are, only three states in the country have laws that mandate sex education for people with I/DD.
Illinois is one of them. After repeated findings of rights violations by the state, legislation was introduced in 2019 that would require residential and vocational facilities for people with I/DD to evaluate consent and provide developmentally appropriate sex education. In August of the same year, Governor J.B. Pritzker signed that bill into law.
Illinois has since created a webpage that centralizes all the information for providers who are now required to have sex ed policies in place. The page lists YAI’s consent assessment tool as one of its primary resources. Developed more than 20 years ago and regularly updated, the tool consists of a set of questions that help staff assess the cognitive level of a person with I/DD who has expressed interest in sex and relationships.
“The tool determines knowledge,” said Consuelo Senior, Assistant Director of YAI Knowledge, the organization’s training department. “It assesses if you know how to practice safer sex...because consent means you can cognitively give permission.”
Holden took the assessment back in 2005. “It helped me understand sex better and be more aware of body language,” he said. “It taught me to make sure the person I am dating is comfortable and says yes to what we are doing.”
“When you provide that education, you are helping somebody with I/DD better understand consent and understand how to report sexual abuse and how to remove themselves from situations that are not safe,” said Senior. “Not allowing them to get that education is making them a target.”
For more than 30 years, YAI has advocated for the sexual rights of people with I/DD. During that time the nonprofit has developed a policy, trainings, and curricula that support professionals, caregivers, and people with I/DD. YAI’s policy has become the standard that many look to when creating their own curriculum.
Such is the case for the Association for Individual Development (AID), an I/DD agency in Aurora, Illinois that is currently working to develop a sex education policy that mirrors YAI’s. More than 20 AID staff recently took a two-day consent training with Senior and plan on using YAI’s consent assessment as part of their sex ed curriculum.
“I left the training a better person...I think staff needed to hear about this topic we have avoided and didn’t know how to address...it was so refreshing to hear someone share this knowledge that really planted a seed for us," said Andrea Consolatti, AID’s Director of Program Development. “We all have a desire to connect and have relationships and it’s no different for people with I/DD—they just need more time and education with material presented in a different way.”
States like New York are still lagging behind.
Although schools are required to teach about HIV/AIDS, New York does not mandate schools to teach sex education. Efforts to address hurdles in sex education in New York City have gathered steam in the past several years with the introduction of eight bills to improve the curriculum in 2020. However, due to the pandemic, legislation was halted to prioritize pandemic relief. Similar bills introduced in 2021 are still pending.
“Especially for people with I/DD, the fear of abuse is what leads many guardians and caregivers to stay away from the topic of sex completely,” Senior said. “I don’t think they understand that education is what helps prevent abuse. Lack of education leads to more abuse because you don’t know how to take care of yourself, you don’t know how to say no, and most importantly, you are not empowered with sexual advocacy.”
Nationally, the failure of most states to mandate sex education may soon grow into an even larger problem. In remarks commemorating the 32nd anniversary of the Americans with Disabilities Act (ADA) earlier this week, Vice President Kamala Harris pointed to the disproportionate risks of pregnancy complications, limited maternal health care, and sexual violence – conditions unlikely to improve following the Supreme Court’s recent Dobbs decision – for people with disabilities.
Vice President Harris described the goals of the ADA as, “enshrining in our laws the protections that rightly should be in place to ensure that all people in our country are treated equally and with dignity and respect.” Where sexual health is concerned, the playing field is anything but level.
This year, New York’s Office for People with Developmental Disabilities (OPWDD) sent out a memorandum to state providers on sexuality rights for people with I/DD, signaling a possible step forward in sexual equality for the community.
“New York absolutely needs to have a law,” said Senior. “This memorandum is a step in the right direction but also very overdue since the last one came out in the early 1990s. We need to make sure people with I/DD have the opportunity to realize their rights as human beings.”