I Gotta Be Me…

“Make me do things it looks like I don’t want to do”. This is a tall order. My son, who has autism, typed this message out at age 20 (he is 40 now).  This is typical of Jeremy; a bright guy who has a special kind of charm that endears him to people who take the time and effort to get to know him.  What he is saying is that he wants to be included in the community even though his behavior may indicate otherwise.  He rocks back and forth to his own rhythm to make uneasy situations more comfortable for him. Sometimes, he hums or makes noises to express joy or frustrations. His world is a world of pictures. When the world changes and the pictures he holds in his brain don’t jive, he is uncomfortable until he visualizes where he is and a new picture emerges. Next time, he will be ok. I doubt if he would want his life to be any different even if it were possible.  He is ok with who he is-we are the ones who need to learn to be ok with who he is.

Oddly enough, people with special needs want to be invisible like most of us.  They don’t want to “stick out” in the crowd.  I refer to my son as an individual who has autism not my “autistic” son. It’s called “people first” language and it makes sense. If I had arthritis, I would not want to known as “arthritic Linda”.  A diagnosis does not have to define a person. My son, who has autism, is funny, mischievous, charming and sometimes a bit sneaky!

No one wants to be labeled “wheelchair bound” or “crippled” or any number of labels we often use to define anyone. I also have never known anyone who has special needs who wants to be pitied or overly praised for how they live their lives. If you are wondering if a person with a disability needs help, just ask. If you know a family who is avoiding attending services because they have a family member who has special needs, reach out and invite them to come with you or sit with you.  If you know an elderly person who has stopped coming because the effort is just too much trouble, invite him/her for coffee, and find out why. Or contact me so we can discuss what needs to happen to make you or your loved one, or a friend, participate in any community activity.  I can be reached at lmarino@jfcspgh.org.

Old habits die hard.  Use people first language-you will find that eventually this will change how you will perceive anyone with a disability. Taking this even further is the possibility that labels will disappear altogether.  An interesting concept that, I hope, one day, will be a reality.

This post written by Linda Marino, Special Needs Coordinator, Jewish Family & Children’s Service

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