Don't Apologize

So, you're going about your day, and somebody says, "We didn't know you had that disability; someone should have told us", or perhaps they imply you or someone else should have told them.

Okay, this is a demanding and insulting statement.  How can someone possibly predict what they need ahead of time in every new situation?

Our initial reaction might be to apologize, but don't apologize for being human.  You are valuable.  You do not have to be God and predict your future needs any more than someone does who does not have a disability.

Simply state, "I hear that you are uncomfortable not knowing what my needs might be.  I wish too that I could have known ahead of time what I would need.  Unfortunately, this is not something I can always predict.  I  have learned though that I normally can compensate on my own and that when I cannot, I can state what I need once I figure it out.  Thank you for being open and flexible as I figure out what I need."

Having a disability is a personal thing.  You get to decide to whom you disclose it, if and when you disclose it, how you disclose it.  If others are uncomfortable or feel their own inner need to people please or predict, that is not your job to fix, especially ahead of time.  If you want to, you can empathize with their discomfort, but it is not your job to fix their discomfort.  It is their job to sit with it. Discomfort is not a bad thing, and it is not your job to make others comfortable with their own emotions and needs.

Your job is to sit with your own hurt or anger, to process through it, and then to decide if it is worth your energy to confront the person or to let it go.  Their demands on you to be more transparent and not have boundaries are an insult.  Recognizing it is an insult will pull you out of the anxiety that arises when others are anxious about your disability.  Recognizing that they have invaded your boundaries will also enable you to feel your hurt feelings and then decide what you need from them going forward.  Do you need more space emotionally?  Do you need to be less transparent?  Do you need to be more transparent?  Trust is earned.  You do not have to freely give it away to family, friends or co-workers. In a serious situation, what you need after your boundaries have been violated might have to be verbally negotiated, such as the statement above that I gave about not being able to predict your needs ahead of time, and that you will communicate your needs once you do know what they are. In less serious situations, it can just be that moving forward, you create more emotional space with that person and do not give too many details too quickly. The goal here is not to make them feel guilty or to change them but to change yourself, to change how quickly you open up and trust.  You do not owe it to anyone to disclose that you have a disability unless you need something from them and then need to ask for help.