Sexual assault has dominated the news cycle. It is clear that this issue can no longer be ignored. Easy to miss was a recent story about people with intellectual and developmental disabilities (IDD), who are sexually assaulted at a rate seven times higher than those without disabilities. That’s right – seven times. Truly an epidemic.
This is horrifying. Sadly, it does not surprise me.
People with special needs are vulnerable to this kind of abuse because of many unique factors, which include those of our own making. Much like when someone who uses a wheelchair can’t get into a building without a ramp — the problem is the building, not the person. We need to make healthy relationships more accessible to people with IDD.
First and foremost, we must acknowledge something– “stranger danger,” the idea that people unfamiliar to you will hurt you, is largely false. The harder truth is that most abusers are known and trusted by the victim. Abusers are frequently someone trusted who has access, and then exploits the needs of the individual to carry out their abuse. Fellow providers and caregivers, this is in part our problem.
For many with IDD, life revolves around getting support from others, and from an early age you learn to comply with helpers. Connecticut scores well among national core indicators for community-based services and supports. That said, many federal and state regulations intended to assure quality services and safety inadvertently set the tone for our culture of compliance. This culture exists on the very premise that they are weak and unable to care for themselves. It undermines any assertiveness skills, by often labeling people as “non-compliant” if they resist or speak-up for themselves. I can’t recall having ever been called “non-compliant.” Have you?
Further, applying varying levels of trust in relationships can be difficult for anyone, but particularly so in this support environment for people with IDD. Paid helpers who, with the best intentions, refer to themselves as “friends,” blur an important line which can reinforce the expectation of compliance. Many of us want to please our friends, so being assertive becomes more difficult in those situations.
If you require personal care, privacy and ownership of your body becomes convoluted. People with IDD may be at the mercy of staff scheduled to support them, at the time they can do it, at the level they are capable. The average person needs this kind of attention few times, if ever, in life. I think of when I gave birth to my children and required help cleaning myself and using the bathroom in the hospital. Imagine that; but, always.
So, what can we do about this?
We can keep talking about this. We have to keep talking about this. A person I admire greatly once called sexual health “the last taboo” in services for people with IDD. If the 10,000 people at the State Capitol last month for the Women’s March knew and talked about this epidemic of sexual abuse of people with IDD, we could end this taboo.
We can start educating individuals. Education is the foundation of healthy relationships– all relationships! In Connecticut, comprehensive sexual health education is not required in schools. If districts do teach sexual education, for students who receive special education services and need additional therapies or supports it is often not prioritized. If it is seen as a priority, educators and support staff may be unsure of how to differentiate learning on this topic. Luckily, Connecticut is ahead of the curve on this, with a comprehensive curriculum for people with IDD, developed by Lucille Duguay at Oak Hill, an indomitable advocate for this population with her vast work on sexual health and healthy relationships.
We can advocate for the Connecticut we want to live in. You can contact your local legislators, committee leaders, and legislative leadership and tell them that you want all people to have access to comprehensive sexual education in schools. You can support legislation that helps give all people the chance to live healthy lives, free of abuse.
Lastly, we must stop further disabling people by assuming this epidemic is about them and their inherent vulnerability. This implies that they are weak and unable to care for themselves. This implies that we are not culpable. If we care about true community inclusion, then this is about all of us — and there is something we can do about it.
Katie Hanley is the Senior Director of Oak Hill Centers and leads the Center for Relationship and Sexuality Education at Oak Hill, the largest disability services agency in Connecticut.