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| Motherly love, fatherly love.... |
America has a shameful history of cutting off people with disabilities from the rest of society by sequestering them outside their homes in "group homes" , or consigning them to isolated, often squalid institutions.
106,000 persons with developmental disabilities lived in public and private institutions and more than 1,300,000 elders and persons with disabilities lived in nursing facilities in the year 2000. In addition, data on the outcomes of consumer-directed mental health services and intensive case management models show that most of the 58,000 persons currently confined in psychiatric institutions could be supported in their own homes in the community. The persons who fill the more than 800,000 licensed board and care beds in the United States could also live in the community (Olmstead, Reclaiming Institutionalized Lives)
Motherly love, fatherly love, family love, so-called religious people who love....no person with disabilities should ever be institutionalized, ever. In a society, as great as ours pretends to be, we should be able to care for those who need the most, and they don't need much other than genuine care. There need to be no institutions for the disabled (except for the most severely medically compromised) as long as there are parents, families, religious believers, humanitarians.
Our glass of wine, our vacation, our free time, our right to rest, our need to have our own life, our belief that we should live unfettered of human responsibility ... all denigrate the value of human life.
"Of course, indifference can be tempting -- more than that, seductive. It is so much easier to look away from victims. It is so much easier to avoid such rude interruptions to our work, our dreams, our hopes. It is, after all, awkward, troublesome, to be involved in another person's pain and despair. Yet, for the person who is indifferent, his or her neighbor are of no consequence. And, therefore, their lives are meaningless. Their hidden or even visible anguish is of no interest. Indifference reduces the Other to an abstraction." Elie Weisel, 1999
We need an ethic of care and compassion as evidenced by the reality that every disabled person is lovingly cared for in a home. Without this ethic, our society, our religions, our faiths are a sham and a disguise for our indifference. We must close institutions and care for our own species without excuse and without a reason that we cannot. It is our imperative as humans!
Let the spare cast-off illusion of humanity, aglow with self aggrandizement, return to the shallow waters that spawned it, stumbling as we do, past graves of nameless love.
ReplyDeleteAmen, my brother!
DeleteSorry PHil, but that photo above I find to be pathetic and sad.
ReplyDeleteOntario has no more institutions. It has group homes. Some are good, some are bad. I, for one, wish there was indeed a place where my daughter could be cared for properly when I get too old to do so or run out of money...whichever comes first! I think too, you forget that there are forms of disability that are almost impossible to manage in a home or home like setting. Children with severe behavioural disorders tacked on to their intellectual/physical disabilites do exist. There are also family dynamics, where there are several other children to care for, divorce, etc. I remember times when my eldest was left to her own devices because of what the gal demanded of my attention. I remember having to call on a friend to take her away to get the poor girl a decent meal. No....I don't believe in NO institutions, or out of home care, I believe in GOOD institutions. That can be accomplished also.
Claire, there is never a need to say "sorry" for disagreeing with me...it's always OK! I was attracted to the picture because I had a vision of Adam and I 30 years from now...it was invigorating in that sense!
DeleteLike Claire I dislike the photo. Pity is the first thought that comes to mind. Is that the way you or your son want to be perceived? I dislike the content of this post. What about dysfunctional families or those economically disenfranchised? Home care is a pipe dream. And what about mental illness? What about self abuse? The list goes on and on. I like institutions no more than you do. But to say never? Too simplistic.
ReplyDeleteBill, I am days from 65 and picture of Adam and I together 32 years from now in a caring role does not arouse a sentiment of pity, it arouses hope that we will be together, alive and well. I didn't say never, I made exception for severely medically compromised who require a level of care beyond the ordinary severely disabled. I rally against the "dump and run" syndrome which is all too prevalent and too easily accessible to people who bail on their responsibilities.
DeletePhil, People "dump and run" for diverse reasons--a term I dislike because it is akin to blaming the victim--in this case the person being institutionalized. Not mentioned is why a person is being institutionalized. The reasons are a lack of social supports. Not all people have the physical ability to care for a loved one. Like it or not institutions are necessary. Do I rail against this need? Of course.
ReplyDeleteYour wrote "no person with disabilities should ever be institutionalized, ever." That seems like a very clear declarative statement. No person should ever be institutionalized. Again, way too simplistic. I wish you and your son well, you know that. But you and I know the odds of you caring for him 30 years from now are remote. That is a concern I have no doubt you have put great thought into.
3rd paragraph: "There need to be no institutions for the disabled (except for the most severely medically compromised) as long as there are parents, families, religious believers, humanitarians." I do not blame the victim, "the person institutionalized"; I blame the people who fail to rise to the need, parents, family, society... I do not excuse dysfunction, economics, etc. ; perhaps, you are right, I am too simplistic, as you note.
DeleteI find this post and subsequent discussion deeply troubling. Far more nuance is required. Frankly, you come across as morally superior. Not your intent I am sure. Again, what does a poor working class family do with a dependent adult or child? What realistic options do they have when they are on the edge of poverty? Can such a family, working poor, really provide home care? Can they afford accessible housing? Can they access adequate transportation? Health care? Will the church or another religious organization step in to help? Can these people "rise to the need"? Such people are set up to fail and must do the best they can under adverse conditions. Sadly, this far more common than the home care you desire to see and provide for your son. Sometimes people are forced to make the least bad choice.
DeleteIn Massachusetts, I would answer yes to the issues of supports that you list. I cannot speak for other states...I have great respect for your knowledge, experience and stalwart advocacy but I will not respond to ad hominem argumentation.
DeleteAgree this has run its course. Eric's comments are appreciated.
DeleteFor me, the big issue is the lack of choice. I think that a group home is fine if that's what a family wants, but if a family wants to keep a disabled family member at home, I think they should have that right too. Right now I feel there is such a lack of support services available for that option and that is the real problem.
ReplyDeleteYou are so right, Katy...the lack of supports at the state, federal and local levels are abysmal to allow us to give our kids/adults an adequate home life. In Massachusetts, it costs the state 250,000 for residential or institutional placement. As parents, we could do a much better job of continual love and care for a fraction of that amount. We do what we have to to, with what we have...which is always not enough help.
ReplyDeleteMy goodness but that escalate quickly. I see this written piece simply as a mission statement, which is always filled with no small measure idealism and certainly not as a moral high ground from which to espouse rules or regulations.
DeletePeople will indeed have difficult decisions to make and since it is nearly impossible to fully understand another person's motivation and situation we try to respect their decision, when it resides within a consensus boundary of reason. Unfortunately there is in this case, of disability and illness, something quite wrong rewith the consensus opinion.
The dialectic of a chosen path can be discussed from many different angles. I believe though that the point, as i interpret this post, is of a desire for a paradigm shift, wherein caregivers give more inhome care and government recognizes not only the benefit financially but also long-term improvement in the social fabric, is supremely valid, albeit idealistic. How does that saying go, something, 'When you shoot for the moon you might actually reach the stars'?
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DeleteThank you, Eric, for clarifying my thoughts..you are of course right! It is a search for a paradigm shift and an attempt to look at having people re-evaluate values and positions and rely less on decades old thinking. It's an attempt to have people believe they can do it! Value what is important!
DeleteThis has blown into a much bigger issue. My first impression when looking at that photo Phil was I hope that can be me in years to come. I saw it through your eyes - I was inspired by this woman. I didn't see pain or anything wrong in what was being portrayed. Everyone's cicumstances will obviously be different and we can't all aspire to caring for our children into old age. However, that is what I wish for and I hope I am able to fulfill that ambition. That photo was beautiful as far as I was concerned. It is sending an important message about keeping family units intact and I appreciate that this will often require extra assistance. I know those resources are not readily available.
ReplyDeleteI do, however, feel buoyed along by the hope that I can keep caring into my twilight years. I don't have other more important things on my 'to do' list. I hope that you get to achieve that goal too.
Thanks for adding to the discourse, Marcelle. Your comments captured the essence of what I attempted to say in a clear, concise and insightful manner. I feel that we will make it into our twilight years with our kids, with dignity and grace.
ReplyDeletePhil,
ReplyDeleteI agree that too many cast aside the elderly and disabled, but I also see the other side. Many are not as capable as you and Sharon for various reasons. I try not to judge.
My mom did not want to live in Hawaii and chose to stay in Georgia to be near two of my brothers. She lived with one of my brothers for a while, but then she became so confused that it was no longer safe for her to be alone when my brother and sister-in-law were at work. She moved to an assisted living home that was okay, but not the same as home. Eventually, she had to be moved to a nursing home as she was no longer eating on her own. I hated it, but being so far away and coping with two young kids, I could not help.
Yet, the nurses would go to her room to pick up her phone for her when I called her. She could no longer see to find the phone. She did not receive the level of caring I would have liked, but she was not abused,and she did not have bed sores despite being very thin when she died. I believe most families do the best they can for their loved ones, and the ones who don't are not homes where their loved ones would receive good care anyway.
I am so glad Adam has you and Sharon and I do hope you are there for him for decades longer.
Thank you for your comments and the story that you shared, Sue. I do know and acknowledge that our commitment to Adam is on a parallel course with the commitment that you have for your kids. "Delightfully Different", your first novel, clearly demonstrates the level of commitment and care that I often write about also.
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