Many people with disabilities are not treated as the experts of their own lives. This is especially true for people with IDD and those who require assistance for their care. Despite the great strides brought to us from the disability justice movement, many people continue to live under a culture of compliance. Compliance means that people are expected to follow directions instead of learning how to set boundaries and advocate for themselves. This creates more potential for harm, feeling alone, mental health concerns, and lack of self-esteem among people with disabilities.
The answer to this is to create a Culture of Consent, where families, educators, personal care staff, and providers ensure that people with disabilities are practicing consent and setting boundaries throughout their daily lives. Consent means asking for and giving permission to engage with others without pressure or consequences. For example, caregivers and educators create opportunities to practice saying "Yes" and "No" about physical touch, activities in their daily routines, and to ensure that the "Yes" and "No" is respected.
Boundaries are the foundation for healthy relationships. Setting boundaries means that you decide what you want and need based on what is best for you, even if the other person might be disappointed, sad, or angry. You can communicate boundaries through your words, actions, and communication device to tell people how you want to be treated. An example of a boundary is to say, "I need some time alone" or "I don't feel like hugging right now. I'll wave goodbye instead."