Adelle Purdham, Dignity of Persons, Down Syndrome, Down's Syndrome, Downs Syndrom, Hierarchy of Worth?, Personhood, Respectable layers of hidden evaluations, Stripped of Dignity, Value of Personhood, Who are we going to leave behind?, Whose am I?
Crisis has a way of washing away respectable layers of hidden evaluations to expose what a person really values. This pandemic is doing just that as it relates to people with disabilities and their fair access to health care. This has prompted mother and advocate for persons with Down Syndrome, Adelle Purdham, to ask,
Should the life of a person with Down Syndrome be of any less value?
Paddling against the Impending Falls?
Recently Purdham wrote an impassioned post about the issue:
“Lately, I feel like we’re all paddling downriver in a canoe fighting to stay afloat amid a swift current. There’s a drop-off up ahead and we can hear the thunderous roar of the falls. We’re paddling like hell to make it to shore, but are we going to make it?
And if we do, who are we going to leave behind? Our elderly grandparents? Our parents? Our friends and relatives who are immunosuppressed? Our children and adults with disabilities?
When I found out my daughter would be born with Down syndrome, I read every disability-related book I could get my hands on. I knew it then, as I know it more keenly now, what it was that I was searching for: I needed to know the value of her life. I needed to understand her worth.
I didn’t yet understand that the value of a life is not something quantifiable, determined by our brains, but something felt within our hearts; that our capacity to give love and receive it is what makes us human. Nevertheless, I searched and continue to search for answers hoping I would never need them as a means to defend. Yet, here we are…
Now we are facing a global pandemic and there are frightening headlines coming out of the U.S. that in certain states individuals with Down syndrome may be denied respirators and other life-saving measures when their care stands in the way of a typically developed person. My deepest fears as a parent to a child with Down syndrome are coming true. The currents have turned dangerous, we’re into raging rapids now, and gaining speed.
The truth is that while I could imagine an older person giving up their respirator for a younger person, I could no longer imagine that scenario when it is my parents who would have to make the sacrifice. And I could not imagine giving up my seven-year-old daughter with Down syndrome’s respirator to your typical seven year-old daughter — I think you can understand — nor could I condone giving up my daughter’s respirator to one of my other two typical daughters who do not have Down syndrome.
… a hierarchy of worth should not become the new order of things… citizens with Down syndrome [should not be] stripped of their dignity as human beings and right to life.”
For Adelle Purdham’s full article see “Should the life of my daughter with Down syndrome be valued less?“
What am I Worth?
I have been raising concern about this theme since I wrote “What am I [worth] if I am not thinking?” I concluded there:
The deep dignity of personhood and the enigma of our worth is most profoundly answered in Christ. Every encounter with Him, every instruction from Him, and every aspect of following Him is the exercise of humanity restored in relationship with Him.”
For more, see Whose I am – as a clue to who I am.