Death with dignity

CW suicide, eugenics. This might be difficult to read if you have a loved one with severe health issues.

Death with dignity is a movement which has created a great deal of controversy. Many in the disability community have come out against it in the justified fear that it could be used as a way for society to rid itself of people some see as a burden on society: disabled folks, the elderly, people with chronic illnesses or genetic disorders. It’s been likened to eugenics – the parallels are obvious. And of course, some people oppose it for selfish reasons: they don’t want to lose a loved one, so they force that loved one to suffer.

I have Ehlers-Danlos Syndrome. Current medical science can do very little for my condition, and its nature is such that that’s unlikely to change appreciably for decades. My disorder varies a great deal in severity; some people who have it are in wheelchairs before they’re 20, others 30, others never. Some have pain, others do not. It’s often comorbid with disorders of the autonomic nervous system (POTS) and autoimmune issues including severe food allergies and medication intolerance.

My case is pretty bad. My joints don’t dislocate terribly often, but they’re unstable enough to cause mobility problems and damaged enough to cause severe chronic pain. This is further exacerbated by scoliosis. I also have autonomic issues (postural orthostatic tachycardia), a clotting disorder called ITP, and a long list of adverse reactions to food and medication including severe allergies and migraine triggers. On top of all this, I’m bipolar.

Physical therapy will slow the progression of my disease, and pain medication makes it more tolerable, but eventually the extremely limited life I live will no longer be worth the extraordinary effort necessary for survival. A number of other diseases offer similar outcomes, especially those which feature progressively worsening function. If someone is suffering but they don’t want to die, I don’t want to kill them. I’m violently against anyone being pressured to take this option. And I only support this in concert with a campaign to dramatically improve community support for disabled members of society.

But when that day comes, I want to be able to die with dignity, surrounded by loved ones, not alone in the middle of the night. In my opinion, it should be safe, legal, easily available, and rare. It’s important that we beef up support systems (pain clinics and financial safety net programs especially), but we need this for people who can’t be helped and want to end their suffering.

Related reading: Suicide is not about you

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