A Special Request




Beau came into the house to meet Deb because it was a hot day.

Beau came into the house to meet Deb because it was a hot day.

 I was so happy to see my new friend Deb this past weekend.  We met at camp in Iowa, and she was able to come to my house for a visit.  It was so fun for both of us to see each other again.  We both work hard to communicate, so it always takes time to get our thoughts out, but it was fun to be together.  While we were visiting we talked about something that both of us experience, and I know most people who have an obvious disability are very conscious of.  It is the way others who are not familiar with us act towards us.  It is often hurtful.


When we were little and people talked baby talk to us, it wasn’t unexpected, but to be an adult in your mind and still be treated like a little girl is incredibly hurtful.  One thing that often happens to those of us who use a wheelchair is people think we are hard of hearing and need to be spoken loudly to.  If we are also non-verbal, people are confident they have us understood as someone who is also lacking in intellect.  It is also interesting how people think that if they speak louder and slower, that we will be able to understand and maybe respond.  For me, in addition to being non-verbal, I don’t often look directly at people.  It is part of Rett where I feel overwhelmed if I look directly at someone.  If I can’t shake their hand, which happens most days, it is the final proof they need that I am a little low intelligent girl that needs their pity.  These are my words, not Deb’s, but as we spoke it was obvious that what we both experience is very similar. 

 If I could ask something of those who are interacting with someone who is non-verbal, it is to always assume we are intelligent and that we have very good hearing.  You can speak to me like you do anyone else my age.  I am capable of understanding.  It never hurts anyone to assume intelligence, but it can cause so much pain to assume they are lacking.  I am aware that most people are uncomfortable if they are talking to someone who cannot communicate back to them, but it is so appreciated by me when people get past their discomfort and just interact normally with me. 

Love, Karly

Deb and me


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