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Ask a Self-Advocate: How did you learn to disclose your disability?

This post is part of MAC’s “Ask a Self-Advocate” blog series. This series was written by “JOSO*,” MAC’s 2017-2018 Young Adult Leaders Fellow, who is an autistic young man. The Young Adult Leaders Fellowship provides an opportunity for young adults aged 18-26 with intellectual disabilities and/or autism to learn the professional skills needed to advocate on behalf of other youth with disabilities. “Ask a Self-Advocate” was JOSO’s final project for the Fellowship and will include 13 posts published through the end of the year.

*Name changed to protect privacy.

My suggestions are based on my own experience. I realize that what worked for me may not work for everyone else.

When to Disclose One’s Disability

Disclosing a disability is when a young adult tells someone that they have a disability and explains how it affects them. The timing of when to disclose a disability to a professor or an employer is a young adult’s choice. However, if a person wants to request accommodations, they must disclose. I think that it is best to disclose at the beginning of each semester because colleges have experience with providing accommodations. Waiting too long to disclose might make it hard to keep up with the pace of classes and get proper support. I met with my professors during office hours after looking over the syllabi to figure out which accommodations were applicable to each class. For example, I am granted extended time on exams, but some classes did not have exams.

On the other hand, I think it is good to wait to disclose at work until a young adult knows the tasks they are expected to do. At my first job, I did not disclose my disability because I felt that I did not need any accommodations. At my second job (MAC), I disclosed right away because this job was looking for a person with a disability. Only having had these two jobs, I cannot say much about this topic. However, I can say that I do not regret my decisions whether or not to disclose at my two jobs.

How to Disclose One’s Disability

The first time I disclosed my disability was at Tufts University. I disclosed at Student Accessibility Services in order to get accommodation letters to give to my professors. I learned an important difference between high school and college. In high school, my mom advocated for me and talked to all my teachers about my needs. In college, I had to voice my needs to my professors myself. At first, it was hard for me to disclose my disability because I did not have much practice. It became easier as I continued through college. When disclosing my disability, I had to explain my disability and how it affects me because disabilities are unique to each individual.

I also disclosed my disability at Massachusetts Advocates for Children (MAC). Since this position was asking for a young adult with a disability, I disclosed my disability on the job application itself. Ordinarily, I would disclose after the interview and/or if I got the job. I usually only disclose if I need an accommodation. I explained my disability and how it affects me to my supervisor. I asked for reasonable accommodations and brought some ideas to the discussion. For example, I asked if I could wear noise-canceling headphones to loud work events because noise bothers me. This accommodation was my idea and my supervisor did not have to do anything. Other accommodations were the idea of my supervisor. For instance, my supervisor wanted me to speak during staff meetings, but I told her that it was hard for me to jump into conversations. We came to a compromise. My supervisor previewed the agenda with me before each meeting and helped me figure out the best time to speak. Then, she signaled me to let me know when I could speak during the meeting.

In my next blog, I will talk about my experience at my IEP team meeting.