I have never met Penny Richards but admire her posts at Disability Studies, Temple University blog. When I got into the blogging world the Temple University blog was one of the first I read. I still read it regularly years later. I particularly like the historical entries--figures in disability history I never heard of. The Temple blog does not comment enough on contemporary issues. However when someone such as Richards does write I take note. And I just read the below. I absolutely love it! Commenting on the transplant controversy that has so many people upset Richards wrote:
"So let me get this straight...
If parents walk into a children's hospital and ask for a highly unconventional series of surgeries to remove healthy tissue and organs, limiting their daughter's growth... a series of surgeries that would never be performed on a nondisabled child... the answer is, fine, because she's developmentally disabled?
BUT, if parents walk into a children's hospital and ask for a very standard surgery to treat an organ that isn't functioning properly, a surgery that will improve their daughter's health and very probably prevent an early death... a surgery that is routinely performed on nondisabled children... the answer is no way, because she's developmentally disabled?
Got it."
Not many outside the world of disability get it. The transplant team did not get it. Growth attenuation doctors in Seattle did not get it. Secondary schools do not get it. Businesses do not get it. Universities do not get it. But some of us do get it. And let me tell you those of us who get are not liked. We are considered uppity. I have been told repeatedly that I do not have a chip on my shoulder but a boulder. Good. When I am considered equal to those that walk rather than use a wheelchair said boulder will vanish. How dare I expect to be treated equally! How dare I expect to travel without a never ending hassle. How dare I expect the lift on a bus to work. How dare I expect to be employed. And now I can add how dare I receive a transplant.
Thank you for writing this. As a parent, I can honestly say that this whole controversy (including on my own blog) wore me out. I even ventured down the road of chastising myself for always shouting...
ReplyDeleteThe quote from Richards is simply brilliant. Thank you for that.
ReplyDeleteErika, Yes, the link made by Richards was brilliant. Never dawned on me. Your post yesterday on personhood was excellent.
ReplyDeleteElizabeth, I have mixed feelings about the Rivera case. It seems to have already been placed on the back burner in terms of news. We need to be vocal but I wonder what good it does. It is hard to change the mind of bigots and my goodness comments made on mainstream media sites were shockingly bigoted. If anything, they reinforced my belief we need to eliminate the word retarded from common use.
William,
ReplyDeleteThank you for posting! Ms. Richards is right in that most people don't 'get it."
I find I cannot talk eve to my own sister ( who also hasa disability) about many of the issues that face PWD's as a group.
I feel she finds my views on many of the issues much too combative for her taste, because I will wonder why our society allows such disparities. She just wonders what she needs to do to make herself more acceptable to the able -bodied norm.
I find that so sad.
Thanks for posting. Maybe I should direct her to your blog :)
Nessie
Nessie, The vast majority of people in this country do not understand disability rights and civil rights are identical. The ADA is not some sort of quasi architectural guideline but rather civil rights legislation. Sounds to me that you are asking the all important question why: Why are there social, economic and political inequities. In asking such a question you are rejecting accepted and unquestioned norms about disability. This is not a popular viewpoint, namely disability rights as civil rights.
ReplyDeleteBill- I agree with you, but I also think it depends on where you live. In Iowa City, all of our buses have lifts & according to my friend Keith, who uses a power chair, the lifts always work & he says he's never seen a broken lift.
ReplyDeleteThanking you for your uppitiness and refusal to back down. I had a massive heart attack in 1995 and overheard the nurses discussing my case and how my cardiologist had not ordered certain standard tests and procedures, saying they'd never heard of such a thing (bless them, they were not happy about it). Of course I knew immediately what was going on: I was a severely disabled woman... Why bother?Or ask my opinion on the matter. I cannot even imagine having this done to my child. What year is this? 1930?
ReplyDeleteThanking you for your uppitiness and refusal to back down. I had a massive heart attack in 1995 and overheard the nurses discussing my case and how my cardiologist had not ordered certain standard tests and procedures, saying they'd never heard of such a thing (bless them, they were not happy about it). Of course I knew immediately what was going on: I was a severely disabled woman... Why bother?Or ask my opinion on the matter. I cannot even imagine having this done to my child. What year is this? 1930?
ReplyDelete