About Life With Down’s Syndrome – Amanda
“How I could put this? People with Down’s are lucky because they are not alone. There are lots of others with Down’s and lots of families and groups who love them, and the spirits love them too. They are special. They are honest. They don’t lie. They can have lots of fun in their lifetime. I like to be who I am. I love people. I know how to read and write. I know how to use the remote. I know how to dial the phone. I know how to use the microwave. Some things I wish were different. I wish I could drive a car. I used to wish I could get married, but now I don’t want to. I don’t want to live alone though. I like having family around me. I’m just the baby of the family. Forever and always.
This section is enlightening. It helps us understand how self-aware Amanda is when it comes to her Down syndrome. As with everything else, there is a large spectrum in this regard; some families choose not to highlight the diagnosis itself while others encourage their loved ones to become self-advocates and speak, not only on their own behalf, but on behalf of others with the same condition.
Where does your family fall on this spectrum? Does your loved one talk about what it is like to have Down syndrome? Do you participate in support groups or disability specific activities?
What skills does your loved one have that he/she is proud of? Has your loved one ever expressed a wish to be different (not have Down syndrome)?
In the conversation with the Sheriff’s Department Nancy says: “And Amanda has no say in the matter?”
As our window into the Bailey’s story closes, I’m struck by the thought that this tension, the fear and anger we’ve been witness to by reading this book, is not unusual. Stories like this play out all over the world. People with Down syndrome are born into all types of families; those that have resources and great plans as well as those for whom money is a constant worry and planning seems too foreboding. The truth is that guardianship is something that is better dealt with as a proactive discussion than as an emergency reaction in a time of crisis. The Bailey’s story also bears witness to how easily the subject of the debate gets lost and can end up with little or no control over their own lives.
In 2013-14 we watched as Jenny Hatch fought a year-long court battle with her parents over where she would live.
The attention the story got had a chilling affect on caregivers as well as people whose lives had not yet been touched by disability. Americans of all socioeconomic levels were forced to grapple with questions about how much independence should be afforded to persons with intellectual disabilities and how our courts are set up to handle debates about this question.
Put yourself in Amanda’s shoes. How do you think she felt while all of this was going on? What would it be like for you if a judge, who did not know you or your family, was the one who would decide your fate (even in a situation like this where Amanda had done nothing wrong)? How do you think Jenny Hatch felt having to take her own parents to court?
Do you think money played a part in the dispute between the Baileys over Amanda’s guardianship?
What is your overall opinion about The North Side of Down’s? What do you think happened after the first year of Theil’s guardianship?
[Check out nancyjbailey.blogspot.com for a few stories from Nancy that seem to be written around the time that the book was published. “For Those Who Try to Shut Me Up” tells about how one of the sisters threatened to sue over the book.]
Thank you to the Story Club for reviewing our book, and for asking these important questions. Amanda is very well aware that she has a disability and she is not afraid to talk about it with people who will listen. The laws within guardianship are very restrictive. We continue to have issues with it. Change is desperately needed and that will begin with awareness. Thank you for sharing our story.