What I want Nursing Students to Know

My friend Ashley is in school to become a nurse.  She asked me what I would like her classmates to know for a presentation she is doing on Rett Syndrome.  This is what I shared with her.

I am eager to tell the nursing students that they should always assume intelligence.  Don’t look at your patients face and decide if that person is listening, but assume we are hearing everything that is spoken in front of those of us who are disabled.  Many people think if we are not looking at their face when they are talking, that they aren’t being heard.  That is not true!!  We hear everything even when it isn’t true or it’s unkind.  Don’t say anything in front of someone who is disabled that you wouldn’t say in front of someone who isn’t disabled.  It’s hard to be a patient when you have a disability because nurses and doctors are often uncomfortable and don’t know how to talk with us.  But I would say, if you assume that I’m intelligent you will talk to me like anyone who isn’t disabled. Don’t talk louder.  I can hear you just fine.   If you need to do a test on me tell me what it’s for.  It’s more stressful to not know.  If you need to take some blood, don’t bring in a whole bunch of nurses and treat me like an object who doesn’t understand.  I don’t need to be held down if I am not afraid.

Love, Karly

My friends Barbara and Amy have been so encouraging to me. Barbara sang us a song she wrote



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