Pauline

When you first started working with our son, we were trying to expand his flexibility in working with providers without me present. The last year didn’t end up being the therapy experience we were planning for Tony. I know there were points where the teletherapy programs weren’t easy to implement for anybody. I can’t thank you enough for your patience with him and with me. I appreciate all of the ways you believed in and encouraged him, and I am immensely grateful that you showed up with a positive attitude every week. For all of this and so much more, thank you. Thank you for being an important part of Tony’s growth and journey over the past year and a half.

Linda, TPS, & Kent

Perhaps it may have seemed like a small thing, maybe even something that could have been seen by some as simply good on-line etiquette. But by engaging with me so sincerely back and forth on-line you brought sunshine into a soul just shaking of a period off protective hibernation- enough light to bring out even a few blooms pronged by circumstantial cacti spikes. To Linda and TPS: thank you ladies, I really appreciate you for your kindness <3 . And to Kent, thank you for bringing a bit of a smile to my day with some with your more light-hearted responses.

Some Reading To Consider

Good Kings Bad Kings, by Susan Nussbaum

Of all the things I have “read” over the past year, this is without a doubt one of my favorites. The author of this book was interviewed for one of the books I mentioned last year, “From the Periphery,” by Pia Justesen. I say “read” in quotation marks because I actually listened to the audio book, and I also recommend that you do the same. This book has multiple narrators telling the story, and the version of the audio book I purchased on Google used different character actors for each narrator, which increased my ability to feel the differences in perspective more authentically.

There are a couple of content warnings I need to give for my more religious readers (occasional swearing, brief sexuality in spots), but I am still recommending each of you read this just the same. The reason is that this book gives voice to what it is like being a disabled or mentally ill person in a group or nursing home environment, and there is power in hearing about some of the types of events that can happen to someone in these facilities not just as a clinically delivered breakdown in the news.

One of the characters is raped (graphic detail is not given, just enough to understand the fear and pain of the character), another is beaten, and another character dies as a result of neglectful actions from an employee at the nursing home. These are heartbreaking experiences had by real-life inhabitants of this type of facility (as a scan of past Arizona headlines alone can confirm). Even though we might know these types of things happen, there is power in hearing it in a way that places us in the narrator’s perspective. That allows us to imagine and ponder about whether or not someday it could be us in the same position, and to consider what we would want if we were in similar circumstances.

I think this book broaches some tough topics, but I think one of the most important happens near the end. One of the characters is a wheelchair bound teenager who runs away from the nursing home for a day so that she can have sex with someone she met on-line. This encounter is the most descriptive of any of the mentioned sex acts in this book (though the amount of detail is not significant in my opinion), but I think there are some important messages here also.

Nobody clearly has talked to this girl about safe sex, and I think that is because often there is this view in our society that being disabled renders a person both undesirable and asexual. So she does something that is super risky because nobody has taken the time to talk to her and educate her about these things, assuming possibly that she wouldn’t be able to and that nobody else would want to do that with her. And I think it is important that her perspective is given. We all have the same desires for both physical intimacy and love, and we shouldn’t assume that someone lacks those because of a disability.

“91-year-old woman among dozens slated to lose condos in forced sale to investors due to Arizona law,” by Courtney Holmes, ABC 15 news.

Some of you don’t live in Arizona, but perhaps this type of law exists in your state. And perhaps you can contact someone if you have the time to do something about it if you should feel so inspired. When I first read this article, I immediately saw a future version of myself in Ziba, who is taking care of her disabled son. One of our local representatives is now working to try and make changes to this law according to more recent reporting by ABC 15, but it won’t be enough to save Ziba’s home. My hope is that each of us can use our voices to support laws that prevent this type of thing from happening wherever we live. You can click on the article title above for a link.