Privacy is a human right. HIPPA laws give us this right regarding our health information, but when people with I/DD are receiving services, others or even ourselves, may forget about this right. Self advocates state that if there is anything going on in their lives regarding sexuality, everyone knows about it and talks about it. If they mention wanting privacy with a partner, “a team meeting is called” and suddenly, they have no privacy regarding their personal information.
Self advocates also speak of not having privacy in their rooms to be alone or with others. They are taught about what is private, but then, don’t actually have privacy. In order to teach privacy, we need to give and demonstrate privacy.
“I have the right to privacy in showing and sharing my sexuality.”
For self advocates to receive privacy and explore how it can be taken away.
For professionals to examine in what ways privacy is taken away from individuals.
3 Suggestions that Support the Learning Objectives:
- Don’t share others stories: Think about what information is private information such as health, bodies, being sexual with another person, dreams, goals, etc. This information belongs to and is the person’s own story to tell. It’s not ok to share others personal, private information unless they give you permission.
- Privacy Violation: Think about a time that your privacy was violated. What happened? What did that feel like? What is the assumption the person is making about you? How does that feel?
- People, not Objects: There are many stories of people with disabilities at a doctor’s visit and the doctor brings in a handful of students to learn without asking the “patient” if it is ok. It is almost as if we forget the person is actually a person and not an object. Don’t forget that people with disabilities have the right to privacy and want the same thing that others want..
Giving privacy shows respect and when people feel respected, it builds self esteem. As a professional, being curious and wanting to learn is a great quality, but isn’t ok at the expense of someone else’s privacy and dignity. Giving privacy models the first right as well, autonomy. When people have autonomy they get to decide what happens with their private lives and information, not others.
Self Reflection/Call to Action
Remember, privacy is a right for everyone.
For self-advocates: do you feel your privacy is being respected? If not, how can you speak up?
For professionals: in what ways might you have taken away a person’s privacy? And, in what ways are you supporting the right to privacy in the people you support?