To all the folks who’ve reached out over the years to ask about the care map I drew back in 2012, I wanted to share my podcast conversation with healthcare improvement pioneer Paul Batalden in his podcast The Power of Co-Production. Paul is such a thoughtful conversation partner; having the chance to talk about where …
Tag Archives: disability rights
In the soda aisle
Opening up my world to a wider range of difference in others has meant that there’s more room for me to be me. It’s easier for me to accept and even love myself and all my differences when I get the chance to know and love others for theirs. When everyone belongs, I belong too.
Mi casa es everybody’s casa
I am sometimes asked what it feels like to share so much personal information on this blog. After years of raising a child with special needs, I can honestly say that privacy is something I barely remember.
I’ve had another one of those experiences that are so complicated that it’s not easily digesting itself into a post. But it was too good not to share: There are a lot of spectrums in the special needs world. One of them is the spectrum of embracing folks with disabilities in one’s everyday community. The …
No Pity: part 2
I’m still thinking about my meeting with the young boy last week at my daughter’s after school program. I wanted to follow it up with an apropos book recommendation while we’re on the subject of disability and pity, or the aversion to it.
Once again, I was given some required reading for my disability fellowship. Once again, I put it off–too much disability in real life made reading about it less than desirable. And also once again, I was glad I did. Here’s what I read and what I thought about it:
No Pity: People with Disabilities Forging a New Civil Rights Movement is a chronicle of the Disability Movement as told through the stories of individuals who lived it. “Nondisabled Americans do not understand disabled ones,” author and nondisabled journalist Joseph Shapiro begins the book, and for the next 400 pages we are taken on a journey that posits and answers the difficult question of what disabled people really want from society and why we nondisabled people should want that too. Through personal histories of the folks who have led our country through an enormous political shift that parallels the civil rights movement as a whole, Shapiro attempts to answer that question with a shot across the bow that his title delivers: no pity.
Revealed in these stories is the difficulty for nondisabled—and sometimes disabled folks as well—to change how they think about disability and the individuals who have them, progressing as a society rather quickly from one who shuns, to then paternalistically supports (and pities), and then ultimately accepts and welcomes. In the detailed story-telling of people like Ed Roberts who is a post-polio quadriplegic who started out attending school by phone from an iron lung and eventually paved the way for independent living for many folks with disabilities, we begin to understand the significance of the progress that has been made. Shapiro does a wonderful job communicating how many of these changes were far too slow for the individuals relying on them, while culturally the changes were happening at seemingly lightening speed for our country as a whole. From the Gallaudet revolt in 1988 to the passage of the IDEA and ADA, Shapiro builds, brick-by-brick, the foundation of the house that the disability rights movement built.
For me personally, the book was both empowering and confounding. On the one hand, I appreciate how having a “no pity” approach to raising my child with special needs allows me to envision and create a richer and more included life for him. Much progress has been made and there is so much to be grateful for. Yet I think that for those who have spent years advocating for disability rights, there is a lack of awareness that most people’s cultural attitudes about disability have not changed. I continue to meet parents of children with special needs who, despite advocating for their children’s needs for decades, continue to hold beliefs that their own children’s lives are not worth living. As a society, it is important for us to keep teaching lessons of awareness and acceptance even though so much progress has been made in policy. Deep, widespread and lasting cultural change takes time.
Reading the book, I see how far we have come. Reflecting on last week’s meeting in the after-school room, I see how far we have to go. Let’s get to it.
The Personal is Political is Professional
Many years ago I came across a refrigerator magnet in a quirky gift shop that I have often recalled since. On it, a line-drawn skeleton lies in repose in an open coffin; a thought bubble rising from his skull asks: “I wonder what I’m going to be when I grow up?” To say I’m a jack-of-all-trades …
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“Let there be peace, welfare and righteousness”
Reflecting on Rev. Martin Luther King, Jr.’s contribution to peace thought I’d share a blessing by Hagen Hasselbalch which I found in Earth Prayers. It so beautifully captures the open-armed ambitions of the peace movement inspired by folks like Dr. King: the desire for justice, for access, for respect for each other and the earth. Let …
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No big whoop?
The special needs blogosphere and social media outlets are abuzz about this recent Target ad featuring a boy with Down Syndrome. This kid is cute. Really cute. It’s great to see him there. The big news isn’t the fact that he’s in the shot; what people seem to be focusing on is the fact that …