I’ve recently been asking myself this question, how can someone who communicates so well have such a hard time being heard?
Every weekend for the last fifteen years I have worked with an amazing man. He communicates and is able to let those around him know his wants and needs, although he can be very repetitive with his requests. This is something I have understood is a part of his disability, and also a way for him to ensure he is heard and stay focused toward his goals.
Many folks who have met him comment to me that he seems quite stubborn, always asking questions. This at times may annoy those around him. They may see him as a pest, when I know he’s just self advocating. I realize that as his caregiver I’m required to be patient, but really I want others to understand where he is coming from. He doesn’t have the power or independence to just do what he wants, when he wants. When he asks for things, there are many obstacles he must get past that most folks take for granted that won’t be a problem in their own lives.
First he needs his wishes and choices to be heard, then agreed to and put into action by someone, usually a staff person or family member. He relies on others to drive him where he wants to go, to help him manage his money and spending, and to reach his goal within the time available- which is usually limited due to factors beyond his control. So when he asks “Am I bugging you? He then continuously repeats himself. I want people to have empathy and see the daily struggle and frustration he faces, and mostly overcomes to work toward the things he wants.
I don’t like to think he has to beg to be heard, and want any reasonable request he has to be agreed to, even if it isn’t always convenient. I am sure he will continue to advocate for himself and the reaction he receives from those around him will be challenging at times, but he has the same ultimate goals we all have: to live life, with liberty and freedom in his pursuit of happiness!