I talked recently about institutions, and how many of them were environments that left people with intellectual disabilities little to no control over their lives or power to make basic choices about what was right for them on even the most fundamental level. I've also written about how some members of the medical community (or even families themselves - see the posts that I've made about Annette Corriveau and her belief that she should have the right to terminate the lives of her two adult children with severe disabilities) believe that people with severe disabilities don't have anything to live for. When those two things attitudes toward people with disabilities - the idea that non-disabled people have the right to deprive them of control over their lives and to take their power to make choices on a fundamental level, and that their lives aren't worth living - combine, you get horrid stories like those of the man that the media is referring to as AWA.
Doctor Puts Do Not Resuscitate Order on Patient With Down's Syndrome Without His Consent or Knowledge
I know we've discussed ableism in hospitals before, such as Amelia Rivera and Paul Corby and their organ transplant refusal issues, and the struggle that mother's sometimes have to get medical treatment for infants with Down's Syndrome. But nothing beats coming home from the hospital and finding a DNR in your luggage that you didn't know about (let alone consent to).
AWA, a man with Down's Syndrome and dementia, found himself in exactly that position after being released from The Queen Elizabeth The Queen Mother Hospital in Margate, Britain, last year. 51 years old, AWA was in the hospital to have a feeding tube fitted. His attorney, Merry Varney, says that this is an extreme case, but that doctors frequently authorize DNR orders "without consent or consultation". http://uk.news.yahoo.com/downs-patient-not-resuscitate-row-160531147.html
The DNR stated that staff was not to perform resuscitation on AWA in the event of a cardio or respiratory arrest with no provision of review, because of "Down's syndrome, unable to swallow (Peg [percutaneous endoscopic gastrostomy] fed), bed bound, learning difficulties". The family was not told about the DNR either, even though they say that they and a carer were there to visit with AWA almost daily.
This is beyond reprehensible.
Medical Establishment, Meet Me At Camera Three
I've covered some low ways that doctors have treated people with intellectual disabilities and their families, but this is...pretty goddamned low. Thank God the doctors that have cared for the people I've supported in my career have been, almost without exception, very attuned to the issues involved with working with this particular population...treating them with dignity and sensitivity...because if any of them had tried to pull a stunt like this with people that I supported, they'd be toast. I hope that the doctor who signed off on this DNR never practices medicine again, and that the family takes the NHS down with their lawsuit.
Too harsh? No. None of the reasons for the DNR are justifiable, on their own or with any other reason. There was simply a decision made that, if something should happen, this person was too disabled to live a life that was really worth bringing him back to.
In addition to being disability discrimination by a hospital, that's an insult that cuts to the bone - to AWA, and to everyone who's life he's touched. And it's a shocking (and disgusting, quite frankly) abuse of the medical establishment's power.
It's also a disrespect to the system in which all doctors and nurses work. Informed consent for these sorts of things is a cornerstone. And if there were concerns that AWA didn't have the capacity to give consent, the hospital should have tracked down the next of kin and talked to them - not given up because no one couldn't find them at the hospital (as the hospital says they couldn't).
Everyone involved in making this DNR legal should have known that.
Beyond AWA - This Is Getting Old
I'm getting tired of saying this. I'm almost 35, and I'm getting middle-aged and cranky.
Enough with the blatant discrimination.
It's the 21st century, and it's time that people got with the program.
If you think that it's okay to violate someone's rights because they've got a disability - you're wrong. It's really that simple. That sort of discrimination is called ableism, and there's just no place for it anymore.
And it's time to start holding corporations and systems that perpetrate systemic ableism accountable. Yes?
But where to start...I'll have to do some thinking about this over the weekend...