Labor Day is upon us and this means that it is time for the annual MD “telethon” and as many already know, corresponding anguish will be felt by people with disabilities in perfect accord with the emotional appeals that are used by the telethon industry.
I don’t want to persuade people to give up on charity—especially where real cures can be found for illnesses that can alter lives. I do wish that the fund raisers in all areas of disability related work would wean themselves of the old fashioned Victorian language which is dependent on words like “courage” and “inspiring” and “heroic” and the like.
As a person with a disability all I want today is to be a regular citizen. I don’t want to be any more inspiring than the person next door.
Can’t we have medical advancements and good rehabilitative services without patronizing lingo?
The problem is that the treacle of “old charity” really gets folks to open their wallets. Rational discourse doesn’t seem to “do it” and isn’t that kind of interesting?
But we can cure muscular dystrophy and champion the dignity of people who have MD. We really can do both of these things. Why are charitable organizations so afraid to try new and dignifying approaches? Ah, we’re back to the wallet.
Here’s an idea: the donors can bid for a chance to be on a reality TV show in which they must survive by living with the challenges of people with disabilities.
This scenario would provide both charity and comedy.
You may say that I’m a dreamer, but I’m not the only one…
Read Connie’s thoughts in her post on the [with]tv blog: Same Old, same old
Andrea’s Buzzing About: the Disability Blog Carnival # 20 she’s titled "ON HOLIDAY!"
Andrea has put this carnival together in a very clever narrative that almost makes you feel like you’re there. She’s set up a "buffet" and invites us all to help ourselves, then stake out "spots in the shade or a place to soak up some of the abundant warm sunshine. "Do try some of the brownies — I got the recipe from Gluten-Free Girl and they are fabulous…" she says.
If you’re ready to take a little holiday of your own, this edition of the Disability Blog Carnival is the perfect place to start. But don’t forget the bug spray!
You will find links to other Disability Blog Carnivals: past, present and future here.
(Visual description of black & white photo: a man and a small boy are standing side by side on the shore overlooking a body of water and a bridge in the distance. The man’s right let has been amputated. He’s leaning on his right crutch; the boy has a hold of the crutch in his left hand in a kind of affectionate gesture.)
Cross-posted at [with]tv
by Stephen Kuusisto
Reasonable People: a Memoir of Autism & Adoption
By Ralph James Savarese
The Other Press
“My name is DJ and I am taking a trip of a lifetime.”
The line above appears in the journal of DJ Savarese who is the co-author of the memoir Reasonable People which has just been published by The Other Press. The sub-title of the book is as important to culture as the title itself: “On the meaning of family and the politics of neurological difference”. This timely book is about the Horatian life, “Life” written with a capital “L”. Accordingly it is about family and the life of the mind; about poetry and the fierce resistance to stereotypes of people with autism.
Assuredly one can think of dozens of additional sub-titles for the book: Living Outside their Boxes; Unraveling the Outworn Tapestry of Academic Autism; A Prayer Wheel by Two Poets; or The Road of Salt and Honey.
This is a memoir about “hard traveling” as Woody Guthrie would say, and yet it is far more than a narrative of trouble and triumph. The poet, Ralph James Savarese, skillfully tells the story of his adoptive son DJ’s former life of physical and intellectual abuse and in turn and almost seamlessly tells the story of how he and his wife Emily must grow both intellectually and emotionally and yes, politically, since DJ’s autism is the kind of disability our culture has misunderstood throughout history.
Continue reading “"Reasonable People": On Poetry and the Politics of Breathing”