My Right to Privacy

By Nicole LeBlanc

My name is Nicole LeBlanc and I am on the Autism Spectrum. I work for a disability rights organization as the Advocacy Coordinator. I am here to discuss the importance of confidentiality as it relates to people with disabilities on the job. Confidentiality means being able to trust people to keep certain things private. An example of this is being able to trust people in the business world. To protect your rights on the job you may decide to tell a manager of a business that you have a disability and need accommodations or support to perform certain tasks or to get around to places. People should have control over the information they disclose and feel confident that the person that they disclose to is not going to tell anyone outside the workplace about their disability. Even if it is a great story about something I did at work, please remember it is my story to tell.

It is also crucial that my job coach does not talk to my employer without my permission. I want to be there when people are talking about me. When I am part of the conversation it makes me feel like I am in charge of my services. It can set a bad precedent if my employer is addressing issues about my job only to my job coach instead of directly to me. It is crucial that I get feedback from my boss directly and not just from my job coach.

One time I experienced my confidentiality being violated when my service coordinator wrote an email to my employer without including me. She wrote asking questions about a lost check and said, “Nicole should know better that. There is a fee when you cancel a check.” I felt left out, embarrassed and disrespected. People in the service system world and family members need to learn to grasp the concept of “Nothing about Me without Me.” It is not fun when people tell the whole universe your business. I understand that when abuse is disclosed it needs to be reported to Adult Protective Services. However in general, people should have control over the information that is shared about them with other people! As the old saying goes “Do unto others what you want done to you!”

One important tip I have for my peers is that you should advocate and always make it crystal clear who has written or oral permission to talk about you and discuss your disability. I am an avid supporter of spreading the word about presuming competence. Please do not make assumptions about what I can or cannot do. Always talk to people with disabilities first instead of talking to their family or support staff.