I have been thinking a lot about my life and what I hope will happen in this world while I am still alive. I haven’t had as many events and activities as I did last year because of my CD. It was overwhelming sometimes to have that much attention, but I felt so happy to have a voice that others valued hearing. Since the Fall I have not been as busy. I love hearing from others and how they are affected by my songs. This is the day that my music therapist is coming and I am working on a new song. I feel very happy about that. This new song has been waiting for a long time to get out of me. I am calm today so I hope it will go faster than it does when I am hyper.
My Mom and I have been reading a book together this morning. It is called, Disability is Natural. I like what she is saying because it has been true in my life. She said that if our world revolves around therapies, and services for people with disabilities that we get stuck in our lives and don’t have many freedoms that an ordinary person would have. I know that if anyone could see what really happens in some of the day programs in this country they would be very upset. People are not given lives that matter when they are grouped together with few opportunities to have a normal life. It’s ridiculous to think that going out in a bus with others twice a month if they are lucky to some store or park makes us part of our community.
For people like me, who cannot make our hands operate things, we are given even fewer opportunities. I have an intelligent mind but the programs near us underestimate most adults with disabilities who have needs they can’t take care of themselves. It’s not appreciated that a person can have an intelligent mind and limited physical skills. We are grouped together with elderly adults who are mentally impaired and have Alzheimer’s. We are given the same meaningless objects to fiddle with. Since I am intelligent we are going to have to find a way without a day program, to have a life without isolation. We are exploring everything we can but it’s hard to find people who are open to having someone who doesn’t sit quietly in book discussions. My writing group ended because my teacher felt not enough people were coming. I loved going there. I loved feeling like I could share my thoughts and be heard. I have a women’s study group that I have been going to but since I haven’t felt well for a while I have missed many days. I decided to write about this because I know there are many young girls with Rett Syndrome. I hope you believe they are intelligent. I was so happy to hear of the comments last week on The View when Anna’s family shared that she is intelligent and understands. That it’s just her body is not working right, because that is new. When I was in school and especially when I was young, people assumed girls’ with Rett Syndrome were severely mentally impaired. Little is offered to girls with that diagnosis. It seems like that is changing and I am so happy about that because there are so many great things to do if we are seen as intelligent. For those who have young girls with Rett Syndrome, I hope your schools are believing in her and when she graduates that her life doesn’t end and that she is allowed to show in every way that she is intelligent and capable of doing more than sitting in a room with others who are very impacted by their own disability.
My dreams for my life are to live with my family with the right kind of help so I am free to communicate, create art, write, have friends, have great things to look forward to, have people around me who believe in me and help me on the days when I can’t stand to be living in my body.
I have many hopes that one day there will be relief for the many girls and some boys who live with this rare disorder, but in the meantime, we need your kindness and we need your belief that we deserve more than just sitting and waiting in buildings until we die. My Mom said, after we decided that I would not stay in the adult day program I was in after I graduated from High School, that it was like going to kindergarten and never being able to graduate for your whole life. I would say, it’s like going to pre-school before you can crawl and talk and never be able to graduate. It’s painful for those of us who are capable of more.
I believe there are fewer people with low intelligence than many believe. I think there are many people without the freedom to communicate because no one offered them the dedication it takes to make it possible to share who they are. If it weren’t for my Mom, some of my teachers and caregivers, I would be just like them and I would hope to die very young.
I shared this because I hope this world continues to change for the better. We are all better if everyone is valued. I am sending my Rett friends a big hug today.