Bob

The person to whom this note is dedicated can no longer read it with mortal eyes, but he was given these words in person from me privately some time ago. I share them with you now as a brief commemoration for how a moment of thoughtfulness from him touched my life personally.

I have been to many wedding receptions, and the edges of these memories can seemingly melt together and loose their own distinct hues, with my thoughts on the events themselves blurring and realigning around shared themes. But one reception remains unduplicated anywhere in my experiences. Many receptions have some form of father-daughter dance, which starts with the bride and sometimes gets extended to include all of the fathers and daughters in the room. I have always sat those out, steeped in my own life experiences, soaking in wistfulness of sorts. Simply put, I was never at a wedding reception for such a dance with any sort of father-figure to me.

That much was generally a constant, except for the reception in question. I was standing off by myself, as I tried to redirect my thoughts to something other than the awkwardness of never being able to participate in that type of dance. I looked up just as Bob was nearing me. He held out his hand and asked if I would dance with him. This meant much more to me than he could have realized at that moment, though I did certainly thank him as generously as I could during the dance itself. A few years later we talked about it, and I once again shared with him how much that moment of kindness had meant to me. He said he thought that it might be a bit hard for me, knowing some about my personal story, that he was family to me, and glad he could be there to dance that dance with me.

So for Bob, who passed away last month, and was always very kind to me personally, I share with each of you this memory and my ongoing gratitude for it.

Some Reading to Consider

“From the Periphery, Real-Life Stories of Disability,” by Pia Justesen and “Disability Visibility, First Person Stories From the Twenty-First Century,” edited by Alice Wong.

Both of these books seek to do something similar, I think, in that they present narratives from the lives and experiences of disabled individuals, and as Ms. Justesen puts it, “to end the invisibility of disability.” However, I actually recommend that you read them both, starting with Ms. Justesen’s book. Doing so allowed me, personally, to notice something important.

I don’t mean to paint either book as bad, though I recognize that what I am about to say could be seen as a criticism of sorts- though if it is, I think it should only be seen as a criticism of our society, which puts more value on those individuals considered typically functioning in mind and body. Ms. Justesen, as a non-disabled individual, is giving us interview transcripts. She is assisting disabled individuals to bring their words into the public eye. Ms. Wong, as an activist and research consultant, and as a woman with disability herself who is only acting as an editor, brings us the thoughts of contributors writing for themselves. Thus, they have brought their own words to anyone interested in reading them.

The difference to me, was palpable. The eloquence of Ms. Wong’s contributors, and nimbleness of the prose, honestly were a delight to read. While I believe everyone should hear the words of everyone involved in both books, for me personally, the second book was the one I enjoyed reading the most. That being said, I do have a few additional comments on these books, and why I believe the words therein should be widely read.

I think it is important to note something said in the essay contributed to Ms. Wong’s book by the Harriet Tubman Collective regarding the Black Lives Matter Movement. “Specifically, many were confounded as to how a movement whose primary focus is ending police brutality, could outright ignore the violence experienced by Black Disabled and Deaf people when statistics prove that at least 60 to 80 percent of the people murdered by police are, in fact, Disabled and/or Deaf people.” I personally think this speaks to a bigger issue, one that I have spoken on privately to close friends. Disabled individuals are the most underrepresented, marginalized, and disenfranchised members of our society in pretty much every area you can think of. And it becomes even harder still for them if they are in a racial or ethnic minority.

And, even with both of these books, there seems to be a hierarchy of what is an acceptable disability to speak to mainstream society about when it comes to disabilities justice. I didn’t see anyone like my beautiful son represented in anyone’s words or interviews in either book. Individuals whose disabilities are accompanied by certain behavioral challenges or more significant intellectual disability don’t seem to get their stories shared as often. And that, I think, speaks to another area for which we, as a society, may be failing some of our members. When we talk about stories of disability as a whole, our culture tends to celebrate those that “rise above” what was expected of them. Perhaps then, it is our own expectations (if that is the case) that should be challenged.

Now, Ms. Wong’s book does come with content warnings at the beginning of some of the essays in case the reader might find them triggering, and for the sake of my readers I am going to be a bit more specific about one of them because I do know that a couple of my readers would prefer to avoid a more detailed description of masturbation. No judgment from me for either the author or those who would prefer not to read that, I simply seek to create a safe place where everyone’s wishes can be honored. For those of you that would wish to avoid such a detailed description, much of Ms. Scott’s essay is not for you, though you can read the last seven paragraphs and still get something important out of her message without reading anything that you personally would find uncomfortable.

I think those of us who have been so blessed as to live the privilege of a completely normal or mostly normal functioning body/mind need to hear about the experiences and feelings of those who have not. Age, illness, or accident could alter any of us at any time, but my hope is that by becoming aware of others who have walked these paths, none of us will have futures filled with socially acceptable invisibility.