A Nation of Missing Endangered Adults, Parts I-IV


Part I

What Have We Done?

Back in the ’70s, change was in the air, ushering in a new era of respect for the rights of the mentally ill. Rather than be confined to institutions indefinitely, the mentally ill would have the option of pursuing outpatient treatment and integration with the community. The state hospitals were closed, the doors were opened, and mentally ill flooded the streets…literally, allegedly on their way to outpatient treatment and normal lives.

Except that that didn’t happen. Many have benefited from the closing of state hospitals. We are now, hopefully, a long way away from throwing people in the loony bin because someone thinks that you’re a cross-dresser or worse, anti-war. Many others can have their illnesses successfully treated in clinics and fulfill their potential. The rest took one step out of the hospital and bravely entered…oblivion.

In the somewhat dated but still valuable book Nowhere to Go: The Tragic Odyssey of the Mentally Ill by E. Fuller Torrey, the author shares with us a revealing anecdote. One hospital in NYC was closed and  the mentally ill released. The building was converted later to a homeless shelter whose residents were almost exclusively those who had lived in the building when it was a mental institution. They came right back because they had nowhere to go.

Allow me to get right to the point: Closing state mental hospitals was one of the worst decisions we as a country have ever made. Full stop.

A brief foray into the history of incarceration of the mentally ill and it will be quickly apparent why they were closed. Abuses were rampant and the patients saw little to no improvement in their condition. My point is that the solution-close them down permanently-was the wrong one and that it had tragic consequences.

De-institutionalization is predicated on the assumption that the mentally ill are as capable of managing their own affairs as the average person IF their illnesses are under control. That last part is the key phrase. Can the mentally ill manage their own illnesses? Many cannot, especially those with more disabling conditions like schizophrenia. They are unlikely to remember or feel sufficiently motivated to make appointments, to take medication, attend therapy sessions and apply the lessons learned, or to care for themselves in a manner sufficient to produce recovery. Former caregivers of these people, not to mention legislators, just prayed that these people would have the good sense to go down to the Health and Human Services Office, and they didn’t. They were either not aware or not willing to realize that recovery in a controlled institutional setting is not the same as being in good enough condition to take on the outside world, that symptoms of illness wax and wane over time and that treatment requires ongoing supervision, which many mentally ill do not have the energy or ability to seek out or sustain. Some may not be aware of the extent of their illness or the importance of assistance and may choose to terminate it.

An obvious solution is to commit people temporarily and only release them when they are deemed capable of self-sustenance. This has been done and can yield good results…if you can get that person committed. It is all but impossible nowadays to commit someone against their will. In Nowhere to Go, the author recalls that he personally approached an officer to contain a psychotic woman wielding an axe. Because the woman had not yet done anything with the axe, the officer’s hands were tied. How common that level of inaction is, I couldn’t tell you. My guess is that most officers would be a bit more responsive to such a person. However, that a person could have doubts as to whether it was legal or ethical to contain someone wielding an axe is disturbing in its own right, even if it is rare. In short, a large proportion of mentally ill who desperately need to be committed will never see a hospital bed. Left to their own devices, they will disappear. Patients will wander from home, or lose their homes, and get lost on the streets, never to be seen again. Their parents will have to live every day with the crushing fear and helplessness with not knowing…is their child dead or alive? Without treatment, these patients will not be able to “start over again,” with new friends, a new home, or any of the trappings we associate with mentally healthy life. The remainder of their relatively short lives will be spent in isolation if they don’t commit suicide first.

If patients are lucky, their parents will live long enough to make provisions for that child’s future in a group home or institution equipped to handle their needs, but that assumes that every mentally ill adult has parents that are willing and able to do this. If your parents are dead, disabled, mentally ill or drug-addicted themselves, just plain sucky parents, or insert misfortune here, you’re SOL. Step right up and get your free box.

Part II

Beyond Mere Sustenance: My Child’s Future

Reopening state hospitals and expanding options for residential care is a crucial step in the right direction, but it is only the first step. Not only do we need to avoid the mistakes that lead to abuse of mental patients, but we need to go beyond merely meeting the physical needs of patients and keeping them from posing a threat. Most of you have probably heard of the Maslow Hierarchy of Needs. All people have these needs, but when it comes to institutionalized adults, people act as though they only have physical needs. Physical needs are the most pressing, immediate needs, but they would not be my greatest concern as a mentally ill person or a parent of a mentally ill child.

No parent wants to think of his child struggling to make ends meet or having his freedom taken away by men in white coats, but what really burns your soul to ashes is the knowledge that once you are dead, no one will care either way. People with advanced mental disease are not often capable of making or maintaining relationships. Impairments resulting from mental disease will limit their earning capacity, their mobility, and their overall functioning. This means that they won’t be able to escape in activities like a good job, community service, or clubs or potentially meet friends that way. Commitment to an institution will be their only option for long-term care and their only social interaction they will have is with their professional caregivers. Rarely do their caregivers have a close personal attachment to their charges, so this will be inadequate means of fulfilling social and emotional needs.

Parents usually associate growing up with bittersweetness. Yes, they miss their babies, but they are excited to get to know their children as adults, friends, to see them meet new milestones, like getting married and having children. For those who are raising children with major mental disease, growing up means disease and death and never seeing those prized milestones. It means being more and more aware each day of the passage of time. You know that the day will come when you, the only long-term presence in your child’s life, will be dead and gone. After this, your child will have no one to love him, hug him, or interact with him, not out of a sense of obligation, but because of their love for him as a person. People take for granted getting together with old friends and reminiscing about “back in the day.” Have you ever tried to describe a memory from early childhood to someone that was not there to witness it? They may appreciate the story, but that sense of knowing comraderie, or what I like  to call “the inside joke,” is lost. The emotional investment is not there like when you and your parents are sharing a memory about the time you spent together. Once your parents die, the ‘you’ that existed before hospitalization will cease to exist, and there is no ‘you’ after commitment. Siblings may or may not understand the illness or be willing to make sacrifices to be there for their relatives. Too many of them are embarrassed by their relatives and don’t want to interrupt their lives for them in even the smallest ways.

Patients who escape unemployment, homelessless, or commitment don’t fare much better. Their earning capacity will always be limited and they will always struggle financially. Money will not magically cure them of their social or emotional problems, so despite opportunities to interact socially, they will probably not make any friends and marriage and children are all but out of the question. Schizophrenia in particular is notorious for its negative symptoms that demolish your motivation, your ability to feel and communicate. A person with schizophrenia who is experiencing negative symptoms, which never totally go away, may have no life at all except for lying in their beds staring at the ceiling, trying to chase their racing and disconnected thoughts, to make sense of the nonsensical. In one respect, they are worse off than those who are homeless or committed because the isolation and despair the patients feel is obvious. On the outside, the high-functioning mentally ill are just like the rest of us and there is no need to be concerned or to pay attention to them. Their pain is hidden behind those barren bedroom walls.

Part III

Is There Something Wrong with Me?

In their eagerness to mainstream the disabled to the greatest extent possible, people frequently take umbrage at those who insist that disability…disables. It is not just a different ability or a different way of being and it is not something to be celebrated or brushed under the rug. Everyone knows at least one parent that brags about their kids nonstop no mater how trivial the accomplishment and who is not happy unless someone else’s kids are derided. No parent grates on my nerves more than the parent of a “disabled” child who describes themselves as a ‘tough love’ parent.

My kid may be disabled, but I refuse to let them act like it. I will make sure they meet their milestones on time, that they are ahead of their peers, and that they fit seamlessly into the normal world, and if your kids can’t do that, then you just aren’t trying hard enough, or so the reasoning goes.

I listened to one lady brag in the learning center of my college that she taught her “disabled” kid to cook by age five and about how normal and advanced he was. After “Bullshit,” my first thought was what “disability” did this kid have? More often than not, parents of “disabled” kids have children with mild disabilities like ADHD or dyslexia, disabilities that are easily treated and accommodated once diagnosed. Some parents don’t bother to get their children diagnose and instead self-diagnose them with an illness that superficially resembles their child’s behavior even if there is no real impairment in that child’s life. Some of these dunces will insist that these conditions do not require services, taxpayer dollars, or even the title of disability because it’s just an excuse for failure and it abuses the child by depriving her of her potential (that will not exist if she cannot get *help.*)

Well, all I can say is that I’m not interested in their lecturing me about an unemployed adult child with schizophrenia living at home with me even though he’s 30 because she doesn’t know a goddamn thing about it. Can you explain to me what your “disabled” mild ADD child has in common with my child who suffered major TBI? That’s right. You can’t, because they have nothing in common, so STFU. If  I  were the vindictive type, I might want you to end up like me and wipe that smirk off of your face, to realize that you’re not so special that it can’t happen to you. But no child deserves that because her parents have shit for brains.

Part IV-Where We Are; Where We’re Going

Ideally, institutions would have relationships with the larger community and foster a sense of community within the facility as well. Patients can stay connected in this way while getting the care they need. Caseloads will be small and staff highly qualified so that each patient can get they attention and love that they need, and deserve. *Appropriate* relationships among patients can be fostered insofar as the residents are capable of maintaining relationships. As it is, group homes are good at fostering community and independence, but may not be equipped for handle major illnesses. Hospitals are way too impersonal, but may provide an efficiency and security that cannot be achieved in a group home. The best option so far is to keep your child with you as long as possible.

Answer me this: Parents, if you knew that your child’s future resembled the picture painted above, wouldn’t YOU want to treasure every moment living with and loving your child, to create as many memories as you could with that child so she may carry them when you are no longer there? Is bragging about your child’s accomplishments, or having a normal life, worth that much?

Our current paradigm has seen some success and many other changes could be made to improve the quality of life for those with major mental disease. Still, we cannot just settle for what we have now. Our mentally ill deserve better than to be forced to disappear once their parents die and they are not cute enough to warrant our concern and our current policy of set them free and hope  for the best is so far from good enough that de-institutionalization isn’t the word for it. A better moniker would be the creation of a nation of missing endangered adults.

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2 comments

  1. Meowser · June 1, 2011

    There are other solutions for PWD somewhere between “throw them in the shark tank to sink or swim” (which was what happened to me, and was really harrowing), and “lock ’em up where nobody can see ’em.” In fact, I’ve attended a couple of conferences in the last year about exactly that, which attempted to bring PWD (including those with mental health/cognitive disabilities) together with policy makers to get our feedback about how we’ve lived and how we’d like to, and how that intersects with the kind of resources that are out there now.

    What I kept hearing over and over again from the PWD who had been in “group homes” was this: I have no freedom to be me. I can’t have lovers, I can’t have friends, I can’t see family, I can’t eat the food that agrees with me, I can’t even go to bed when I want to, it’s all about rules rules rules. Now, there ARE some PWD who are completely unable to perform any ADLs, and some whose disability constitutes a clear danger to themselves or others; those folks need to be dealt with in a way that takes those things into consideration.

    But most of us probably can live out in the community among “normal” people if we get the right kind of help. In some cases, that might mean someone to come to our homes to help us with cooking or housework (including teaching us how to do some of those things we don’t know how to do); in some cases, it might mean having a computer system installed to remind us of when to do things; in some cases, it might mean voc-rehab and placement assistance; in some cases, it might mean transportation assistance. Part of the reason these government folks want to move us out in the communities is to save money, yes; even with in-home assistance, it’s a hell of a lot cheaper to let us live in our own homes than to institutionalize us. Those big, expensive institutions are on the way out, and they’re not coming back. And frankly, for most of us, treating us in places like that, or isolating us in “group homes,” is like running over an ant with a tractor. There are definitely people working on innovative solutions for this, I can assure you.

    • joannadeadwinter · June 1, 2011

      Welcome to Dead of Winter and thank you for commenting!

      “There are other solutions for PWD somewhere between “throw them in the shark tank to sink or swim” (which was what happened to me, and was really harrowing), and “lock ‘em up where nobody can see ‘em.” In fact, I’ve attended a couple of conferences in the last year about exactly that, which attempted to bring PWD (including those with mental health/cognitive disabilities) together with policy makers to get our feedback about how we’ve lived and how we’d like to, and how that intersects with the kind of resources that are out there now.”

      Congratulations on your activism and I totally agree with what you’re saying here. Most people with disabilities are capable of at least semi-independent living, of most of the trappings of “normal” life, and we desperately need THEIR feedback on what they would need and want from the service sector. If you have a physical disability or a mild mental incapacity, like Asperger’s or high-functioning Down Syndrome, the prognosis is much better. My concern is for those with more serious mental incapacities like major TBI, low-functioning autism, or schizophrenia. Positive prognoses can be seen in patients with schizophrenia but the illness by nature permanently fractures your connection with reality or every other area of functioning, especially for those with disorganized schizophrenia. If left insufficiently treated for long enough, it can result in irreversible damage to the brain. Not exactly the norm for people with mental health issues, but this group of people alone is overrepresented in analyses of social pathologies. Even if we do not commit them for life, which we should NOT do, I think we need to make it easier to commit them involuntarily so the treatment process can begin early and someone can watch them. Of course, it would also help if patients had access to meds with less intense side effects and that treat negative symptoms.:) How great would that be?

      “What I kept hearing over and over again from the PWD who had been in “group homes” was this: I have no freedom to be me. I can’t have lovers, I can’t have friends, I can’t see family, I can’t eat the food that agrees with me, I can’t even go to bed when I want to, it’s all about rules rules rules. Now, there ARE some PWD who are completely unable to perform any ADLs, and some whose disability constitutes a clear danger to themselves or others; those folks need to be dealt with in a way that takes those things into consideration.”

      Exactly. People with disabilities should be given all the freedoms that they can handle, and for most PWD, this means all the freedoms of able-bodied people. And yes, yes, yes about group homes. In many respects, they are basically institutions with homier accommodations, a smaller caseload, and less equipped staff. For those who need group home settings, I advocate an approach that integrates them more into the community and encourages appropriate relationships. Just because it’s smaller and looks cuter doesn’t mean it’s notably better.

      “But most of us probably can live out in the community among “normal” people if we get the right kind of help. In some cases, that might mean someone to come to our homes to help us with cooking or housework (including teaching us how to do some of those things we don’t know how to do); in some cases, it might mean having a computer system installed to remind us of when to do things; in some cases, it might mean voc-rehab and placement assistance; in some cases, it might mean transportation assistance. Part of the reason these government folks want to move us out in the communities is to save money, yes; even with in-home assistance, it’s a hell of a lot cheaper to let us live in our own homes than to institutionalize us. Those big, expensive institutions are on the way out, and they’re not coming back. And frankly, for most of us, treating us in places like that, or isolating us in “group homes,” is like running over an ant with a tractor. There are definitely people working on innovative solutions for this, I can assure you.”

      Spot-on. Technology will probably be the saving grace for many PWD and their caregivers. I am excited to see what else we can come up with, and the good news is that many of these technological devices don’t need to be specific to a certain disability. Many smartphones, for example, enable alarms, notes, visual voice mail, and more. Using general use technology for disability apps will make assistive technology much more readily available and hence it will cost less.

      Parents might also consider investing in a general assistance account for adult children when they hit a rough patch, much like they might invest in college. The problem is that lower-income or otherwise disadvantaged parents might not be able to afford to put that money away. I partially blame a lack of quality, efficient public services for this, and this needs to be changed. The social isolation of families is another problem that begs for a solution, because fewer taxpayer dollars would need to be spent if people were able to rely on families and communities more to care for their disabled. It’s not uncommon for family members to live states or even nations away from each other and too many people just don’t take any interest in anyone outside their own families. Until this is changed, some parents will simply have to keep their children with them and their futures will be uncertain.

      For those who do not have families or support systems, or who will not likely benefit from services geared toward recovery and independence, I contend that we should re-open state hospitals for them. You’re right in that that probably won’t happen, but I don’ think local care is good enough for them either. They don’t have the resources that the state has and since we no longer throw people in the slammer for “being a little odd,” the hospitals wouldn’t cost as much money as they once did anyway.

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