We are a parent-led group of volunteers who believe that individuals with disabilities and their families are stronger when they have support and live in communities that connect them to opportunities and services in which they can be included.
We work with families in identifying supports, services, and resources to enhance their ability to care for their loved one with a disability. We provide Disability Awareness and Sensitivity Training to businesses, service providers, and recreational programs to help create welcoming environments for individuals with disabilities.
My 12 year old daughter Kristiane (“Kiss”) has autism. During the summer of 2009, she was working with Jenny, her ABA (Applied Behavior Analysis) therapist, on developing her skills in the community. Jenny wanted to take Kiss to the library so that she could teach her about being in a library and also give us the opportunity to go as a family. After first rejecting the idea in fear of how Kiss would be received and treated, I finally agreed on the condition that the library had to have a study room, just in case Kiss got too excited. The last thing I wanted was for her to be a disruption to the people in the library. After much discussion with Danielle (Kiss’s twin), Amaris (my youngest daughter), Brenda (Kiss‘s sitter), and Jenny we established a game plan and went to the library as a family. I was very nervous about this new adventure…
Upon arriving at the library, Kiss started talking because she was so excited about being at a new place. This immediately caught the attention of the librarians behind the desk, but I quickly explained that my daughter has autism, we were there to teach her how to work in a library, and that we needed to get a study room. They smiled and graciously welcomed us. It was going to take a few minutes to get a room, so Jenny decided to take Kiss to look at some books. The process of getting the room lasted much longer than expected but, surprisingly Kiss was doing very well in this new setting. She was doing so well, that I went to ask Jenny if she thought we still needed a room. She was also surprised, but felt it was best to get the room just in case.
I returned to the desk and after waiting awhile, I noticed Jenny heading for the door with Kiss. I asked if anything was wrong and she just smiled and said, “It’s OK. We are going for a walk.” I went back to the desk to wait for the room. Another ten minutes or so passed and I was then told that the room was ready.
After gathering the other girls, I went to the study room and immediately noticed that Jenny was visibly shaking and upset. I asked her what was wrong and her response shook me to my very core. She said, with tears in her eyes, “In all of my years of working with people with disabilities, I have never been asked to remove a child with a disability from a place.” She then shared with me that the security guard told her to take Kiss out of the library because she was disturbing the other people. I did not understand that because I only heard Kiss say something once or twice and it was not any louder or disruptive than any of the other children in the library. It was summer time and the library was filled with children, reading and talking.
At that very moment, my fear of being rejected was realized and my “momma bear” instinct appeared out of nowhere. I quickly went to the security guard to ask him why he had told Jenny to remove a child with a disability from the library, especially since he knew why we were there and we were waiting for a room for her. His response brought me to tears and showed me just how important it is to educate people about working with and providing services to those with disabilities. He told me that people were complaining and that she was a disruption. I asked him if he explained to the person who was complaining that she was a child with a disability and we were trying to get a room for her so that she could learn how to work in the library. He just looked at me and said, no. He could see that I was upset. By this time, the anger had turned to pain and sadness, the tears were streaming uncontrollably down my face. He then went on to say that this was no different than a mother with a crying baby, he would ask her to remove the child from the library. I tried explaining to him as calm as I could that it was not the same, this is a child with a disability. He then said to me, in a stern voice, that the library was for everyone. Shaking and trying hard to not make the situation worse for my two other children, who were upset and watching from the room, I said to him, “At what point are you going to realize that she IS a part of the everyone and has every right to be here.”
After listening to him in disbelief, I asked if he had a child or family member with a disability and his response was no. I asked him if he had ever worked with a person with a disability and he again answered no. After going back and forth in conversation, it became clear to me that it was not his intention to bring harm to my “sweet Kiss.” It was his lack of knowledge and experience that caused him to respond in such a negative manner towards my daughter. Slowly my anger and frustration turned to compassion and sadness for him. I was sad because here was a man, trying to do his job, but not properly educated on how to interact and serve people with disabilities and their families. I was sad that he was so focused on doing his job that he could not see the pain he was causing my family and wondered how many other families had experienced this pain.
After what seemed like forever, he said to me in what probably was his way of apologizing, “Maybe next time you come, you can ask to use the room where they read books to the children during the week.” I looked at him, still with tears in my eyes and simply responded, “And maybe next time you can be part of the solution instead of the problem.” I then packed up what little pride I had left, wiped my tears and went to the bathroom to get myself together before going back into the study room to talk to my children. As I walked several people in the library tried to console me. I could not stop, I had to let my two girls know I was sorry, because prior to going to the library they expressed their concerns about the possibility of people mistreating Kiss. They told me that some people don’t understand our family. I assured them that it would be fine…
I went back to the study room and even though I tried to contain my pain, I couldn’t. We all sat in the study room and cried in disbelief at what had just happened. We cried, not for Kiss because she did not seem to understand what had happened, but for us and families like ours who experience not being accepted everyday. Fortunately, Kiss loves everyone regardless of how they treat her, so as we left she looked at him and smiled.
After leaving I immediately called my husband, Ken, to tell him about what had happened and I could hear from his silence just how hurt he was. He said, “Just get out of there!” That night my family did not sleep and the next day I found out that Jenny and Brenda had a rough time processing what had taken place as well. We spent that rest of the day just talking about the situation and asking, “Why?”
What happened to my family was a wakeup call. I soon came to realize that crying and complaining about the injustice was not the answer – I had to do something to bring about a change. After crying on the shoulder of my husband, father, brother and close friends and discovering that some of my friends who have children with disabilities had similar experiences, I decided to do what I had asked the security guard to do, be a part of the solution. If the lack of knowledge and understanding was the problem, then the solution is to teach people how to serve and work with people with disabilities. The Kiss Foundation is the solution for families like ours and it is our goal to create welcoming environments for people with disabilities and their families.