When I saw at the end of this film, part four, before the depressing note that stated all that Indian law might not permit Reshma to do in her life, how she was making a living by painting, all I could think was, WOW! Go for it! At the very least, she is not being held back by the strictures of disability law and Medicare and Medicaid earning limits, or being forced into a permanent sick role because of same, simply in order to have a roof over her head and food to eat. No, she was lucky enough to have a family that both really and truly took care of her in her worst moments and fought for her in the best sense of the word, and also one that let her go when she needed to fly free. Most of us are not so lucky…alas. I think the support that she got all through her illness played an enormous role in her recovery, frankly. And I dunno how many of us get that sort of community or family support, but I wager that it is not many. I certainly did not. I wish I had, but it was very much to the contrary. Instead of support, I was abandoned entirely, both financially and emotionally. Left high and dry, to such an extent that people who met my parents after the break, never knew I existed, not for thirty-five to forty years. Some are only just learning of my existence now, as they meet me when I visit my mother. They didn’t even know or understand that all along Lynnie had a twin!
But I do not wish to dwell on that, except to say that things did not have to be as they were. And we do not have to live as second class rejects in society, except insofar as we accept that role. And take it on, along with the disability status and payments that we are told we should apply for at the first psychotic break. I disagree. If a person has a work history (and history is the single best predictor of the future, if anything can predict it) and has shown that he or she can hold a job, then why after a psychotic break should they be told they will never work again and that they should apply for social security disability? Disability signifies Permanent and total disability, that’s what it is for. You are not supposed to get better, and it’s meant to be “for good.” No, it is not impossible to get off SSDI and you can in fact earn your way off it. But how many people do? Not a single person I know who ever obtained SSDI payments ever got off it or ever even tried to do so. The best they did was earn just below the legal limits of what one can earn before they start counting against your disabled status. Which is to say, they worked, yes, but only a little, and only to the extent that it never threatened their standing as a disabled person.
What a crappy system. Someone a few months back when I was in the hospital asked me why I was so angry at the System, and why I counseled anyone under 50 not to go for disability…and this is why. Because it paralyzes a person into doing nothing with his or her life, it keeps them mired in permanent poverty, and it encourages lethargy and breeds depression and recurrent illness. I believe it does NOBODY any good. Frankly. True enough, I cannot say that I am not grateful as hell that I have had a monthly income for all my adult life, as I have never been able to work an 8-hour day regular job. But if, instead, there had been creative rehab or job counseling and creating, maybe someone would have discovered my artistic abilities earlier in my life and got me going, and using them earlier in a more productive and income-earning capacity.
I was never, and never claimed to be, unable to do anything at all. I simply could not follow a routine of any kind or go into an office or workplace from 9-5pm. Since that made me unemployable in their lights, I was “disabled” and put on the SSI and SSDI rolls. But in truth, while it guaranteed me an income, it also sidelined me for life, because I didn’t have to do anything to survive or even to get ahead. And in fact I was not allowed to get ahead or I would have lost the very disabled status that I now needed simply to qualify for housing and food. It was a terrible catch 22 situation that only perpetuated itself once I was caught in it. I could never get out of it once I accepted the first check…
And it only got worse when I moved into the cushiness of subsidized housing. Now, not only can I not move (it is HUD housing not Section 8 so it isn’t even portable) but I am “used” to a piddling rent of 1/3 of my piddling income. I have stopped knowing how to scrimp and save and live on pennies a day…because I do not have to. Everything is guaranteed here. Everything is safe. But I am suffocating, because I have no life, and no prospects for any change or growth or movement because at age 60 my life is at an end…I will live and die in these measly 2 rooms, living on SSDI and SSI, earning nothing, doing art and storing it away for nothing and no one…What good is that?
That, my friend who wanted to know why disability is such a bad deal, is why I counsel anyone who is not close to retirement not to go the disability route, not unless you want to do nothing and live in poverty for the rest of your life, and are content with a life of watching TV and a strict budget, using food-stamps and coupons. Because it will come down to that, that is, if you have a TV. And lucky you if you have a car and can afford to keep it on the road….If not, think about whether or not you can get rides, because the bus can be a drag when it is raining or snowing and you have a lot of groceries to carry. You better keep the car in tip top shape in any event, because you won’t be buying another anytime soon on disability from Social Security…I dunno about you, but no one I know gets much more than $1000.00/month from SSDI and usually we get hundreds of dollars less than that. One car repair bill can rip a monthly check to shreds.
I dunno what most wage-earning people think a life on disability is like, but it isn’t a cushy life of luxury, not at all. I haven’t bought or been able to buy new clothes in nearly ten years. (I wouldn’t want to anyway, because I like to buy used clothing and not generate new carbon, but do you really think I could afford on my SSDI check the price of any clothing except Walmart’s, that abomination of a store?) I cannot even afford to get food at Stop and Shop, let alone new clothing anywhere. I buy literally everything used, at GOodwill, or I barter or get things free through Freecycle. Or I do without. The only new purchases I make are art supplies, when I cannot get them at tag sales, or through other outlets. And I do not replace my erstwhile beloved pet Eemie, because I know I cannot afford a cat. You make choices in this world. If you choose to go on disability, I believe they should tell you precisely what sort of life you are choosing. Or give you options so that disability is only one of several equally feasible ones. It ought not be simply: go back to work at the same job, at the same level of stress, or go on disability. That is stupid, especially if one has been psychotic. But it also ought not be, You have been psychotic, and we are certain it will recur, so you will never be able to work again. That is double nonsense. NO ONE can predict the future, or tell a single soul that a psychosis will or will not recur. Only time will tell, and predicting a good prognosis has been shown to pay off with better outcomes than telling a patient that the future looks dire.
Okay, enough for now. I hope I haven’t been too oldy and moldy-sounding. I’m just very discouraged about my own limited and stagnating life. I do not feel as old as the system is making me behave. I could have a good life for the next two decades or more and maybe even a career. After all, Grandma Moses didn’t start painting till she was much older than my mere 60 years, and she had a long painting life ahead of her. No one told her she should just hide her head in the sand and wait to die. Or if they did, she ignored them and went ahead and painted and painted. I won’t give up on art, but I am frustrated and feel utterly stymied by a system that has clipped and cauterized my wings.
Finally, this is the large Turtle that I owe Tim, as it looks at present. I am going at it very slowly but surely.
WAGblog: Dum Spiro Spero 
Pam, I just now read the second part of your post again. I had missed a lot. I quote you about disability: “But if, instead, there had been creative rehab or job counseling and creating, maybe someone would have discovered my artistic abilities earlier in my life and got me going, and using them earlier in a more productive and income-earning capacity.”
I agree with you on this one. The thing is, there weren’t any other options, for myself or my son, at least none that I knew of at the time. I so wish there had been. With CFS, some days, I wonder what in the world any of us could do, but then, we have those days where we function. When I applied for my son, he denied the benefits, literally and figuratively, for years. I did pay his rent and utilities, and bought his food for him. Still, he said he did not want it. Asked me to give it back to them, but I couldn’t support him and he had no choices offered.
His ACT team would tell him they were meeting with him to talk about jobs. He’d call and tell me. I’d call them, surprised! They said they only told him that to get to see him. “We can’t really find him a job, but we can talk to him about what jobs he might like to have.” Argh…
I feel the same way you do about dying in my little apartment that I can’t seem to get out of and I have some portability as it is, but the folks in administration at Section-8 say they are going to stop that. They are already making me pay for having an extra bedroom, after having one for all these years. They say they don’t have one bedrooms in this county, which is true, so no other option. I am so dependent on my government, and look at it.
Maybe we won’t have to die this way. Maybe. I wish so much we could see a better life Pam. A life where our talents, skills and education will have meaning and add to this world. A life where we do not have to depend solely on the government. I’m like you, I don’t mind buying used clothing, but it isn’t because I, “don’t want things in this world,” which is what my sister said to me when I applied for disability. “I just wish you wanted more,” she said. I’ve never forgotten those words. I had to give up so much, including respect from friends and family. I have a car, thank goodness.
There is a Peer-to-Peer run business in my area, but a long waiting list for perspective employees. The man who started it said he was surprised that most of the disabled people who thought they were unable to work could work, but only when the work worked for them. He said offering flexible schedules was the key and withing weeks they had a thriving picture framing business going.
Thanks again for sharing and I loved the video!
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Hi Pam,
Thanks so much for your reply. I tried clicking to reply directly under yours, but couldn’t, so am commenting here.
I may have mentioned Cooperiis Healing Center in NC. They are such a super model for a living environment. They raised millions of dollars, and I guess, the woman who started it, who is a parent to a daughter who struggled in the mental healthcare system, apparently had land in the beautiful mountains. I wish my son could go there and they’ve mentioned helping me raise money, but I haven’t pursued that avenue. Many people raise money through their churches, but we don’t really have one right now. We attend a Buddhist Temple, but not that often, because of my fatigue and the driving time. I can’t do a lot of things because of fatigue. I think if it wasn’t for that I would have at least tried already to have formed a group of people who are interested in a home like we are talking about.
As far as disability benefits, well, I can’t imagine how either my son or I would get along. He and I both are struggling these days. The past six or more months have been difficult. I truly believe that it is community we are missing. It is the missing link. I just don’t know what to do about it.
I’ve seen my son and I both get so much better when we had more support, and esp., when we had more friends. Moving, and then having to go to the hospital all the time makes people disappear from your life. I think this is esp., sad when it comes to younger people like my son. He said last night he felt left behind by his friends. In a way, it is true. It’s like they couldn’t accept that he was different than the boy they grew up with. Friendships, a sense of belonging, a place in community and society, gets slashed in the lives of so many people who live with disabling symptoms of mental illness.
More than anything, I want to see my son have a way to make it in this world, you know. I want to see him have people in his life, other than me, who care and who can think outside the box. I want him to have love and although, I imagine our blood family love us, but there seems to be too many obstacles to our having a more intimate nurturing family relationship with them; turning a blind eye, stigma and shame, ignorance, judgement, or simply not knowing what to do and ignoring any familial responsibility.
My son thinks about going to school for physical therapy or recreation. He would be good at that. He loves recreation and has great coordination. He has the hands of a healer and I believe he would do well in the healing arts, such as with Massage Therapy. I’ve even mentioned to him to consider a certificate in aromatherapy and giving manicures. He did complete a course in Pottery. He has artistic talent, but he lost his confidence. Recently, he finally, after one year, picked up some chalk I bought for him and drew a very interesting picture of our backyard. He also completed a course in Sustainable Agriculture at a community college near us. I don’t think he has much confidence. He also says he is utterly exhausted, and I can see this, but the doctors never say anything about this.
He’s still volunteering at the botanical gardens in horticulture therapy, but only once a week. He enjoys it and wants to have more times like that. He likes working with the plants, but I think being around kind people who treat him as an equal is what he likes most about that group.
I have CFS and get brain fog. It took me a while to figure this out, and I am a person who does spend time looking within and trying to understand myself. My son is not so much. He’d rather go play Frisbee, you know. I think he has brain fog and CFS too. He goes without good sleep and perspires so much. I know that affects his adrenaline system. He was such a healthy kid! He had asthma as a baby, but after that, I hardly ever had to take him to a doctor and when I did, we usually went to the holistic clinic and received homeopathic remedies. Later, we used acupuncture. We need those kinds of services again and I would include this as regular services if I could be involved in creating and/or maintaining a healing home.
About fifteen years ago, I sketched a house in my spare time. (I don’t have artistic talent). I called it the Plant People Emporium, The Healing House, and had a few other names. I drew stick figures in the form of plants, with human heads and hands. The place I imagined is the same as the one I imagine now. I also saw a big house (in my mind) when I was a child. (forgive me if I told you this already). I would tell my parents that when I grew up, I was going to have a home for many children who didn’t have homes. We would make our own family. I played with my dolls and imagined this place. I have to wonder about these things. I can’t help myself 😉
(Wow. I should have asked if I could write a blog post on your site. My sincere apologies. Feel free to delete parts of this comment that are not relevant to the post).
The medications my son has taken all seem to backfire on him. A few have helped with cognitive abilities and “negative symptoms,” but each one brought side-effects and/or adverse events that were too scary to continue him on the meds, such as the liver panel changes (his father’s family has a genetic liver disease, so that worries me of course. I want his liver panel to be normal). His former MD once told me that my son, “should stop all anti-psychotics and never take them again,” because of the changes in liver enzymes while on the meds. He said they would, “kill him.” At the time, his psychiatrist and the team she worked with, said that we should fire that doctor. They denied receiving the documents the MD provided to them. They did not want to see them and told me as much! We do not work with that team anymore. I am so frustrated Pam! The clubhouse, the local residential program where he could live and work if accepted, will not even consider a client who is not taking antipsychotics, even if that person is functioning at a good enough level to carry out the given tasks, work or chores. Now, several years later, he has been seeing a psychiatrist at supposedly the best clinic in the state (after getting severe Akasthisia and shortly afterward, being dismissed from the practice where he had been going for more than three years), and the story is the same as with the team we had to get away from. The message is clear: Take any drug, as long as it is an antipsychotic, no matter what, forever. I cannot believe this is modern state-of-the-art medicine!
I guess, these are my main reasons for being interested in a healing home. (I say healing home simply b/c it comes natural to me and flows). My family needs a different option that mainstream psychiatry. I am not against medications. I am for alternatives though. I have seen acupuncture work miracles on my own psyche, but I had a very talented acupuncturist. I believe our diets can change many things about our health. I’ve experienced the changes from stopping sugar, and restarting.
With all my ideas, I still spend much of my time in profound sadness. I get breaks, through seeing the wonder and beauty in nature and in the occasional warm interactions with people, but the nagging sense of not knowing what to do is keeping me down.
Thanks so much for this space to share. I’ll take a look at Kickstarter.com
I hope you have a good day today. The sun is finally shining here after lots of rain. Take good care, and I look forward to our communications.
Warmly,
Michelle.
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Hi Michelle,
I wonder if Kickstarter.com might not be a place to go when or if we ever got it together enough to go forward with a WHoleway Home? That was the name of the website I had been trying to think of when I mentioned it way back when. I dunno….If I knew where a house was that I wanted to buy and how to go about starting the project I would have a clearer idea of how to proceed but I just cannot think that far ahead…I wish someone with better skills in that arena could help. I am thinking of somewhere in Easthampton, Massachausetts, at the moment, only because it is less expensive than Northampton and yet the entire area is very accepting of people with varying degrees of differences. Also, there are a great many resources in that area, both for the “disabled” and for the “mentally ill” or whatever you wish to call that population. THat’s as far as my research has gotten — I do not have any particular structures or addresses in mind. But the area is lovely and frankly it is where I would love to live if I had the opportunity. A Wholeway House, situated near Northampton, MA, but not smack dab in it, to my way of thinking, would be ideal. Near resources like inexpensive arts and gym and health facilities (yes!) for people with mental illness, but not so close to Northampton proper as to be prime real estate and too expensive to afford. (I was just up there visiting a friend, and she showed me all of these and more. So I do know that such facilities are available for an extremely low fee, when a fee is charged at all.)
How old is your son now? And what is he going to do with “the rest of his life” if he is on disability now? It is a huge problem, esp given that Federal funds are supposedly set to run out anytime between 2017-2033. Does he have ANY training, education for marketable skills? If not, I would fear for him, given the uncertainties. Maybe this Wholeway House should not be merely a pie in the sky dream of ours but a necessity?
Just thinking…
Pam
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Very good post(s) Pam. You know, I think receiving disability benefits is a blessing, as well as a curse. We need money to pay for doctors and medications, and assistance with rent, but disabled people also need a place to fit into this world and I think work, whether it is for money or volunteering, gives us that meaning and a place to belong. Work is so important.
I noticed during the Presidential election, and now with all that’s going on in Washington regarding our economy; slashing programs like Medicare, that disabled people aren’t even mentioned. We hear about senior citizens, but never do they mention the large population of people on Social Security who are young and disabled. It is like we don’t exist in the conversation, yet every decision they make affects us.
I have my hobby of writing and photography, but my son never developed a hobby such as mine before he went on disability. Ten years ago, when he was first diagnosed, I believed what psychiatrists told me. Now, I think what they told me was a lot of BS and kept my son out of the real world for a long time. Too long. Now what? Who is going to help? Psychiatry? Vocational Rehab? Sigh…
I continue to feel that our only hope will be in the small grassroots organizations that I hope to see more of in the near future. I wish so much I had the mental ability or rather, the stamina, to help create a holistic healing home. I know you and I briefly touched on that subject in an earlier post, but what are we to do when one day out of life takes so much out of us. I can only dream about a place like that.
Thank you for sharing this post. I enjoyed reading the comments too. I’m sorry that so many of us must live the way we do, without meaningful work or a way to supplement our income and now, the fear we must each feel when we hear about the government cuts. I think it is a hard life.
Warmly,
Michelle.
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Oh, and Pam, I wasn’t arguing with your premise or the spirit of what you were saying. I didn’t feel vilified. I wish the State Occupational Rehab program had worked — I waited 10 months for them to find me a job, and the one they finally found was as a waitress. I had already specified I would not work as a waitress. If I had wanted to waitress, I could have found that job on my own without “rehab,” right? Every job I had told them I was capable of and willing to do, the told me it “would be too stressful.” One job I wanted had been working in any capacity at a library. I had done that in college, so I knew what it entailed. Another had been getting training as a certified nurses aid. My therapist told them I couldn’t do that because the horrors of patient care and death would have been too depressing for me! It was more depressing not to have a job. They also insisted that I try a job that required an amazing memory. And while I had an amazing memory back in college, the meds and ECT had laid that in the dust. I finally gave up. They had even sent me for a battery of psychological tests before placing me, and this is what they came up with. Nothing they offered came close to meeting the suggestions of the psychologist. They wanted someone who could qualify the prospective employers for government subsidies for employing “disabled” people. Anyone would fit the bill.
An interesting article to go with your post: http://apps.npr.org/unfit-for-work. It supports what you are saying about “disabling” the young people who would be better off with a job that suits their particular talents and abilities.
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Oh Donna, I so sympathize, and your situation is just what I am talking about…in the opposite way. You are caught in a terrible place, between the burr and the band saw! Believe me, I meant in no way to inflict guilt or recriminations on anyone who truly cannot work, because of illness, physical, psychiatric, iatrogenic or otherwise. I just feel that the system is ruining a lot of YOUNG lives by insisting that they take on the sick role way too early and then handicapping them with permanent poverty, rather than actually working to find them a path INTO society, a way to use the skills they have and the unique abilities that each individual should be able to find within herself…That is what would have helped me. I could NEVER have survived the usual workaday world. Never in a 1000 years. But had anyone intuited my artistic nature, and encouraged it, and found me a way to fit in that scene, perhaps I might have earned a way into an income-earning niche in the world that way, and not languished on the “dole” for so many decades instead, fearful of earning a single penny.
They get you coming and going, on SSDI, as you know. We don’t want to be permanently disabled. We want to get better and earn at least a part of our livelihoods. But they stack things so much against us. For instance, my meds cost almost $50,000.00/year (or so the insurers’ bookkeepers claim). How the heck can I pay for that if I lose my SSDI? So you see where I am coming from. But I also completely sympathize with you. I know the ravages of ECT personally, so I am with you there as well. In any event, my complaints about the hurry up and get SSDI push, was towards those UNDER 50 (and really I meant even younger…those 20-somethings who have suffered a first psychotic episode and might never have another.) You, in my opinion, have been brutally abused by the system in every way and deserve all the monetary compensation you can get.
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In 1995 I had worked 12 yrs as an administrative assistant for an internationally-known medical school. Prior to that, I had worked as a licensed multi-line insurance adjuster and free-lance artist. Prior to that, I achieved a B.S. in Applied Arts and was in Who’s Who in American Universities, was on the Dean’s list, and graduated magna cum laude with a 3.85 GPA. I had won 5 first place awards (5 yrs in a row) in regional poetry contests prior to 1995, also. I had had a portfolio showing of my art at a metropolitan downtown bank. When I mention these things to people now, they look at me like, “Yes, they told me you were crazy.” As if, since I have schizophrenia, I could never have accomplished anything of worth even prior to my diagnosis.
From 1995 to 2002, I was diagnosed, run through a course of ineffective medication trials, hospitalized 18 times, unfortunately given ECT, attempted suicide 3 times, got a divorce after 13 yrs of marriage, lost my home, lost my administrative assistant job, and went to live with my parents which was perhaps the worst part of all. They were supportive in that they fed and housed me, Pam, don’t get me wrong. They provided me with an automobile so I could get to my various jobs (tried 11, failed 11). You can’t say I didn’t try to work. I attempted a file clerk position: ECT left me unable to alphabetize or remember the proper sequencing of numbers. I also attempted 4 sales jobs but was unable to grasp how to run a cash register: ECT and confusion from medication left me unable to count change or learn how. I took a job as a floral designer, at which I was quite good, and enjoyed it immensely only to be gradually “encouraged to leave” once I asked for disabiltiy accommodations under the Americans With Disabiltiies Act. Not only had schizophrenia stacked the cards against me, but so had the system. I tried to do bill collecting, hospital admissions clerking, counting FAXes (yes that’s a job) and home healthcare, as well as being a personal assistant in a nursing home. Again, you can’t say I didn’t try. I even tried a state-run occupational rehabilition program, which was a total bust.
Each time I got a job, the tasks were either beyond my abilities at the time or discrimination and stigma shoved me out the door. I don’t know how many times my dad looked at me like, “What is WRONG with you that you lost another job?” He didn’t understand, either. A big part of the problem continued to be the destructive nature of ECT, and the side effects of multiple antidepressants and antipsychotics and sleeping meds. Meanwhile, my weight doubled, so the stigma of obesity can be added to the above.
So in 2004, I applied for SSDI and was approved within 3 or 4 months. It was still another 5 years before I was able to successfully achieve independence. SSDI allowed me to get an apartment and a life of my own. I’ve been in my own apartment now since 2009. I’m starting on my 5th year here this month. Twice during that period from 2004 to 2009, I got an apartment for 6 months or less and relapsed and moved back with my parents, although I managed to stay out of the hospital. Hospitals are another story!
I get what you’re saying, Pam. Once on SSDI, I am afraid to try to work again even though I feel much better now. Social Security would allow me a trial work period, and I can even earn up to $800/month without giving up my disability income, but I’m afraid. I’m in my mid 50’s. Who would hire me? What would I be able to do that would pay as much as disability? Heaven forbid I might have to move back home with Mom. I would like to have a job, maybe 9-12 hours a week, enough to supplement my SSDI. I also get a small disability pension from my old admin asst job. But now, especially with Social Security in danger and all this sequestration mess, who knows what might happen? The first people they would cut from SSDI would be those who had showed any initiative.
These days, I spend a lot of time writing in my journal, going to therapy, and watching TV. Especially the latter. I probably watch TV 12 hrs a day. For a while, I was very active in taking care of my elderly mother in her home — providing companionship, transportation, doing laundry, cleaning house, buying her groceries, etc. But after 2 yrs of that, I fell off the deep end again. The constant pressure of caregiving and attendant family expectations drove me back into a numbing depression, insomnia, and anxiety. Now, I do what I can for her, but not as much as I was doing. So would I be able to handle the stress of working? It’s hard to tell. Back in 2003 I sacked groceries and cleaned restrooms for a local grocery chain. Everyone told me it was “good, honest work and nothing to be ashamed of.” And I wasn’t ashamed. But I knew the illness had robbed me not of potential, exactly, because I don’t think you lose the potential. But it had done a number on me as far as self-image and self-confidence were concerned.
What’s ahead for my future? I’m working on defining my goals. I’m hoping to get out of my rut and on to bigger and better things. Maybe that will include getting back to my art work and poetry writing, I don’t know. I hope so. Meanwhile, SSDI is providing the means of assistance I so desperately need.
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