“To deny the right to make choices in an effort to protect the person with disabilities from risk is to diminish their human dignity.”
-Robert Perske, Long-time advocate for people with intellectual disabilities
We all take risks in our lives. Some of us take more risks than others. Some of us still wear masks to prevent COVID, and others have stopped wearing masks, even on planes. Some people are cautious, and others are less cautious. Regardless of whether you are cautious, like to take risks, or are somewhere in between, the important piece is you get to decide the level of risk that you want to take. You get information about risks and decide how much risk you are willing to take. You deserve the dignity of taking risks. The “dignity of risk” is part of what comes with living a full life.
We can’t talk about the dignity of risk without first talking about self-determination. They go hand in hand. According to the American Association of Intellectual and Developmental Disabilities (AAIDD), people with IDD must be able to:
- lead in decision-making and problem-solving about all aspects of their lives and have the support they want to make decisions;
- advocate for themselves with the assurance that their desires, interests, and preferences will be respected and honored;
- choose their own supporters, friends, and allies;
- direct their own supports and services and allocate available resources;
- hire, train, manage, and fire their own staff;
- acquire additional skills to assist in determining the course of their lives;
- use adaptive communications devices and other assistive technology; and
- take risks to achieve the lives they desire.
We need to remember that people in our sexuality education classes or conversations deserve self-determination and the dignity of taking risks. The term “dignity of risk” applies in many areas of life and means being able to make a choice (self-determination) even if it could have negative consequences. With sexuality and healthy relationships, this could mean getting your heart broken or breaking someone else’s heart, feeling rejected and lonely, being assaulted or assaulting someone else, having an unplanned pregnancy, or getting a sexually transmitted infection.
These can lead to scary and painful consequences when taking a risk, but so is the consequence of not living a full life. Overprotecting people with disabilities keeps them from many life situations that they have the right to experience, and it may prevent meaningful connections or fulfillment of their hopes and dreams.
Making our own choices (self-determination), including choices we make around sexuality and relationships and taking risks, is part of being a human. The reason we are sexuality educators is to help people make informed decisions and have the best life possible with relationships that are fulfilling and positive. How do we manage the possibility that someone in our class or someone we support may actually take a risk, and it leads to a negative consequence?
Let’s look at the positives of making your own decisions and taking risks. Think about a time that you choose to take a risk. What happened? Was it positive? Negative? If positive, what did you learn from the experience? If negative, what did you learn from the experience? But either way, how would it be if you weren’t allowed to make your own decision and take a risk? How would that impact your self-esteem and self-worth? Personally, I would feel controlled, disappointed, angry, and depressed if my right to make my own decisions and take risks were taken away. I feel respected, alive, and free if I am given the right to make my own decisions and take risks. And I get to experience more of the life I want! And remember the old saying, “It is better to have loved and lost than NEVER to have loved at all.” Dignity of risk allows people to live a full life- the life the person wants. We learn from the risks we take and grow and feel alive again!
What does one’s dignity of risk look like when we are teaching or talking about healthy relationships and sexuality? It’s really about our mindset and knowing our role, which includes that you:
- Believe people with disabilities should be able to make their own decisions and seize opportunities. Quincy Abbot is very familiar with dignity and dignity of risk. When his third daughter, Becky, was born with brain damage in 1963, Quincy began his lifelong journey as a disability rights advocate. He was an active member of The Arc National Board from 1991 to 2001 and served as The Arc’s National President from 1996 to 1998. Quincy pointed out that the word “risk” has a negative association. He prefers to use the phrase “seizing opportunities.”
- Believe people with disabilities are good at making decisions or have the ability to learn good decision-making skills. Give them the skills to review their choices’ pros and cons and think critically.
- Remember, our role is to teach in ways individuals can understand the information needed to make informed decisions. For example, when teaching consent, we decide it as a freely chosen yes. Then, we teach what freely chosen means. Having knowledge is powerful in making our own decisions.
- Lastly, you understand that when we give people the skills and knowledge to make informed decisions, we support their decisions and are there for them afterward. If things go great, we celebrate with them. If things don’t go well, we are there for them to think through and learn from the experience.
Make sure your sexuality education classes and conversations include this approach. Let people seize the opportunities that their lives present. Teach people how to make informed decisions and provide them with the necessary information to do so. Help them think about what worked and what didn’t and learn from those opportunities! This is all part of being human, which is exactly what people with disabilities are—human.
For more on mindset, watch this video of Chris Lyons, a nationally recognized attorney specializing in the defense of community service providers, who uses this example to illustrate the importance of building the “dignity of risk” into the lives of people with disabilities.
https://mn.gov/mnddc/parallels2/one/video08/dignityofRisk.html