Defending my life

I hate conversations, like I had yesterday, where I find myself defending my life as a person with quadriplegia. They usually include questions about how I "can stand" being unable to do so much, implying that what I can't do is what my life is comprised of.

And then this morning I was reading Bad Cripple, where Bill wrote about a conversation he had with a nurse about how decisions are made to end the lives of those with high spinal cord injuries, i.e. quadriplegics.

This is a bunch of nonsense. And, worse yet, these societal notions that some lives are not worth living still affect our health care, education and access to living in the community. As long as people with disabilities are classified into separate categories and deemed as having lives worth living - or not, depending on how disabled we are, we will continue to perpetuate the circular logic that such lives present no opportunity for quality of life.

Imagination is a cruel barometer in determining the fate of someone's life. Not being able to walk is something most people "can't imagine", they say. Having people feed or dress you must be mortifying, they add. And what about those bladder issues? Oh please. Let's grow up.

One of the reasons I played quad wheelchair tennis for years was because I wanted to maximize every bit of function I have. Make no mistake about the fact that most people work toward getting improvements in function and independence, if they survive the injury. I've seen so many people do better than doctors predict and do more than they are "supposed to do". In cases where the level stays the same, people adapt.

No one can convince me that those whose lives are ended out of the fear of others are better off not living. Using an able bodied standard to measure quality of life is ableism, plain and simple. It is rampant in a society that touts physical perfection and independence to a fault.

We need to take a good hard look at our core beliefs about the value and dignity of human life. I am tired of defending my life to others. I no longer list what I can do as if I have to prove that I have value. My life would have value even if I couldn't move anything but my nose - or even that. And don't think I'd necessarily learn to bowl with my nose either. Those days are over too.

I might, however, sneeze at anyone who said "If I were you, I'd kill myself."

NH Legislature proposed redefinition of terminally ill

Over at Not Dead Yet, a post about a proposed change of language in assisted suicide- redefining terminally ill to terminal conditions- a change due to be discussed next week.
From the Not Dead Yet site:

A link to HB 304 - AN ACT relative to death with dignity for certain persons suffering from a terminal condition.

Definition of "terminal condition":

XIII. “Terminal condition” means an incurable and irreversible condition, for the end stage of which there is no known treatment which will alter its course to death, and which, in the opinion of the attending physician and consulting physician competent in that disease category, will result in premature death.

Read that definition carefully, terminality is defined as having a condition that is irreversible and will result in a premature death. My partner would fit that definition. Many people I work with also fit the definition.

None of them are dying.

For more, click on the above link.

Why assume that heaven means you can run and skip?

Or, more exactly, that heavenly bliss requires it.

Remarkable words in the NY Times from Peter Singer, who wrote recently about knowing Harriet McBryde Johnson. An excerpt about meeting Harriet and having dinner with her:

After she spoke, I arranged for her to have dinner with a group of undergraduates who met regularly to discuss ethical questions. I sat on her right, and she occasionally asked me to move things to where she could reach them. At one point her right elbow slipped out from under her, and as she was not able to move it back, she asked me to grasp her wrist and pull it forward. I did so, and she could then again reach her food with her fork. I thought nothing of the incident, but when she told some of her friends in the disability movement about it, they were appalled that she had called on me to help her. I’m pleased that she had no difficulty with it. It suggests that she saw me not simply as “the enemy” but as a person with whom it was possible to have some forms of human interaction.

...

And Singer writes about their ongoing email correspondence and ponders a few questions further on:

Her life was evidently a good one.....I know that surveys have found that people living with disabilities show a level of satisfaction with their lives that is not very different from that of people who are not disabled. Have people with long-term disabilities adjusted their expectations downward, so that they are satisfied with less? Or do even severe disabilities really make no difference to our happiness, once we get used to them?
via nytimes.com

h/t to Meredith (thanks!)

Oregon State Board of Nursing protected nurses over patients...

Not Dead Yet reports about nurses stealing drugs from patients and two cases where nurses "assisted" a patient with suicide, although family members doubt any request was made by the patient.

They quote from the Portland Tribune article by Peter Korn, which states:

"In some cases, nurses in the monitoring program were allowed to continue in their jobs even after multiple instances of stealing medications from patients.

The state report issued Wednesday supported the Tribune’s stories and found even more problems. According to the report, even cases of alleged sex abuse and attempted rape that came before the nursing board were not referred to criminal
authorities.

And, the report found, the nurse monitoring program “does not protect the public as effectively as it protects a participant’s license to practice.”

Click above for their post.