It is easy for me to only live in the day that I am in. To know of the yesterdays and the tomorrows is actually very hard for me. Things remind me of the door to an outside world and things remind me of the yesterdays, the tomorrows and the other responsibilities to greater long range projects that I’m involved with. From being on public assistance programs with their requirements of me in order to have a place to live, food to eat or any way to not be homeless – to the business efforts that I am making – to where I am in a physical location – all these things I am able to remember because of mnemonics and adaptive living tools. If left without those tools, I don’t remember those things and simply live in the today that I’ve been given without any other reference points.
That doesn’t usually come with problems, if a person with my disabilities doesn’t do anything else with their life beyond letting others be responsible for it. Where there are no efforts to live independently in the community, to learn new things, to have a business, or to move somewhere, or to extend beyond today, pay bills, or try to be in a house to live rather than homeless – it likely wouldn’t matter. But, to me – it does matter. I have successfully lived independently in the community for a number of years despite the disabilities that make that more difficult than anyone would suspect.
But, I have done that successfully because I do not take it for granted and do not ignore the very real difficulties that have accompanied my disabilities. There are exercises I can do, tools I can use, strategies that I can apply and efforts that I can make that a bit extra from what I would have to do if I did not have these disabilities so that I can live successfully and accomplish a multitude of functions that otherwise might be impossible for me. The fact is, I like walking with two feet rather than to have one drag along causing me to stumble – that I can accomplish with a simple set of exercises that I’ve learned and can use. I like having both hands pick up things without dropping them and I can do that with another set of exercises and strategies, if I can remember to apply them when I noticed that I am dropping things with my right hand. I can do these things to help myself using a very simple group of things as mnemonics to remind me of what those things are and how to do them and when to use them.
What I can’t do it seems, is to explain this to others very well. And, what I also can’t seem to do is to make anyone understand why I need to do these things and that if I don’t do them, then my function suffers and starts to go backwards rather than to be sustainable at a functioning level. And, there are a number of those tools and strategies for each of the disabilities that I have. Because of post traumatic stress disorder that came from being raped and physically abused in domestic violence, I don’t watch movies and tv shows portraying that in certain ways to the audience. It reminds me of those experiences in such a way that I can easily forget that today is a day far away from the people and events of those times and the two times of now and then can become interlaced where it is impossible for me to tell the difference. And, believe it or not – there is not a drug to fix that.
When I moved to New York City – to Staten Island – I did it with the use of these tools and strategies that have allowed me to live independently in the community for many years and to have been able to enjoy a very high level of functioning beyond my head injury, PTSD and other mental problems. I’ve lived each day working to the best of my ability to make that move successfully and to continue to function at a level where I hope to be an asset to my family, my neighbors and my community rather than as a problem that others have to fix or deal with in some way. But, the fact is – I have failed miserably. The section 8 voucher that was supposed to have taken care of a place for me to live has been lost, my business efforts have resulted in nothing but a few hundred dollars every six months or so and my efforts to continue functioning at any reasonable level to be an asset have been made impossible or not been effective despite those efforts.
If I only had to live in the today which is easy for me to do, I could remember to eat and to help within my daughter’s apartment where I’ve been staying. I’ve been able to do that and despite losing nearly all my adaptive living tools and mnemonics during the hurricane and its resulting power outage when people moved them, stepped on them, threw them away or simply misplaced them – I have been able to restructure some of those tools, remember some of the exercises using photographs of where I used to live so I could see the mnemonics I had there on the walls and fireplace mantle, in the kitchen and in the bathroom, as well as being able to use my voice exercises and face exercises and to use other strategies once I remembered them.
What has been absolutely impossible to do, is to work with others to help me do any of this effectively. The Georgia office of the section 8 transfer has made it impossible and unreasonably so – to find and to secure a place here. My financial resources were not enough to bring everything with me to Staten Island, so I had to give away and sell for very little – nearly every single thing that I had built for my studio and my opportunities to build a business along with those things that made my daily function more possible from my sheets and blankets and comforters to the very mnemonic devices that helped me to remember to do things to help myself and how to do them. I did keep some of them but had to put them in storage – my brain in a box that has a number of tools in it to remind me how to do things, my encyclopedias that are all marked up with my notes that remind me that I know of those things, my heavy coats and boots for the snow, my legos that help me think through things by building with them, and my paperwork of things I’ve already done and researched and know about – as well as my piano keyboards that let me create music to nourish me and let go of the stress and fear – overwhelming fear and frustration especially – that I don’t otherwise deal with very well. All of those tools I couldn’t afford to bring with me even though I did keep them – and they have cost me paying out of the very little bit that I get from an SSI check in order to store them in Georgia where they aren’t doing me one bit of good. I can’t afford to bring them here and certainly can’t drive a truck with them in it all the way to New York City when I don’t drive everyday in any respect.
It is hard not to give up, in fact. It is hard to not say, oh forget it – I’ll go live in an institution where the state pays $400 a day for me to be served my meals, pays another massive amount for pills to keep me doped up so I don’t know I’m there and can’t remember why, and pays another $350,000 a year for numbers of social workers to log it all in paperwork based on the fact that I am a “client”. It is a horrid existence where instead of writing this on my daughter’s computer to a greater world, today I would be sitting in my own piss and drool with double vision and not two thoughts to go together that could actually be said to another human being. I hate that. I hate the fear of that which pervades every choice I make. And, worst of all, I hate that after all my efforts to live independently and to have a business of my own that can employ my talents, skills and knowledge to have my own financial sustenance, that the only resources available to me from vast numbers of programs and foundations and government agencies – all of which have been given trillions of dollars to serve people like me – that none of it is available to me for any purpose other than to further disable me and chemically lobotomize me in some institution somewhere. That is wrong on so many levels and makes every moment of living into such a horrific eternal hellish existence that I cannot even begin to describe it. I’ve been there and would rather not live at all than to ever be forced to endure it again. I hate that I have failed. It seems very wrong that none of these systems and intentions by people who care about those with my disabilities are making my life more possible, more likely to succeed at living independently and having my own economic well-being from my own efforts, nor more likely to have anything close to a level playing field ever.
The chances are, that I would never have a level playing field anyway because of the extra efforts that I will always have to make for my own functioning level to come anywhere close to what “normal” non-disabled people enjoy but it is very unfair for those programs intended to help me to make that playing field more impossible and more likely to fail rather than succeed. I don’t want a visiting nurse to come over and tell me to eat or to fix my food for me or to show me where the door is every day when I can use tools and strategies to do that. I don’t believe that my life and my opportunities are served by being so doped up on psych meds that my hands shake, I can’t see, I can’t eat anything without throwing it up and my own shit and piss is running down my legs most of every single day (among other things of a similar nature.) I don’t want to be confined to a place where there is no opportunities to ever live independently or to be on the internet to speak to and interact with a greater world (among other things) and where each moment I am hated by the very people being paid there to help me such as it is in every mental institution in our country. I don’t want to watch another $350,000 a year spent for social workers to track me on paper while they get to live in nice big houses and I don’t have anything and can’t afford to buy my own pair of shoes to fit my feet when I need them. I don’t want to see another $400 a day spent plus whatever ungodly amount is spent on 27 pills a day at $34 per pill to keep me a vegetable in some mental hospital, while I’m given no funds to actually live anywhere on this planet or in this country nor to be given any access to do so while pharmaceutical companies profit off my daily existence, psychiatrist and neuropsychologists and nurses and administrators get to run over to Target and Macy’s every other day to fill their houses with any and every damn thing they want at my expense. I don’t believe it is in the best interest of anyone including me, to do it that way while I suffer each moment in it and my opportunities to accomplish anything in my lifetime are decimated by their use of my disabilities to derive their profits and incomes while giving me nothing of value in return for it except that hellish nightmare of my life’s destruction and my abilities’ decimation. It is a never ending horror.
So, what I have now – is a brief explanation of some of the tools I use to function after the suggestion was made by my mother this morning to make an outline of it and to write out these things – which to be honest, is a good tool to deal with the stress and frustration and fear that is encompassing me right now. I wrote about some of that – above. And, here is the other part about the tools and strategies that I have been using and are commonly thwarted by others unintentionally (as I’ve had to stay at my daughter’s apartment that does become something I could not manage control over with children running about and adults making choices that I would never have made, like watching the Law and Order series play act the rape and violence against women that have made up many of their stories.) –
1. I use cable television news and other information found there on commercials and on history channel shows to remember and get better at speaking English, using words to say things, to understand what is being said to me when people speak to me, and to understand how the sounds form words that mean something. I do this by having the closed captioning on to know what is being said even when the camera angle does not show the person’s face that is speaking and by taking notes on 3×5 cards from the information and the news being presented.
2. Legos help me to think through complex and difficult problems, to put together information, to sort information and to understand how information fits together. I do this by building with the basic Lego blocks rather than the sets, incorporating patterns of color that repeat throughout the building that I create and by sorting the blocks into appropriate size and color boxes once the piece is being taken apart. It helps with motor skills in coordination and dexterity as well as with a number of thinking skills required for complex problem solving and reasoning through difficult creative requirements in every day living – from how to get to appointments using the bus system and walking routes to what things to buy in a grocery store where I’ve never been and how to find them (and other difficult complex tasks.)
3. Mnemonic tools for me can be as simple as a colored push tack beside the door frame to know there is a door there which goes to somewhere whether it is the bathroom or the outside world to stickers on the refrigerator to remind me that food is found there to eat or to prepare so that I can eat, to more complex reminders that are accommodated by mnemonic tools that I’ve used for so long that they simply do remind me of what they mean and would likely not mean that to anyone else. I use a Maitso die cast red car sitting on the counter to remind me of a range of exercises that I can do to help myself because at one time, the children never used that car I had bought for them and none of the adults around me, friends, family and neighbors found it necessary to pick it up, look at it or move it which commonly happened with many other items. This tools reminds me of the hand exercises and face exercises and voice exercises that I can use to help myself when those functions are going backwards or failing. These exercises came from occupational therapies that I found in books or from friends that told me about them and I learned to use them to help myself. So, many of my mnemonics are like that – toys or household things that normally someone would not move – placed where I would see it naturally without looking for it and they work well as long as they are not moved, or re-arranged, or put away somewhere.
4. When my mnemonic tools were misplaced, thrown away or destroyed during the hurricane sandy event – both during and after it when the power was off and many people were in my daughter’s Staten Island apartment from neighbors to friends we were helping make it through the storm, someone finally suggested that I might refer to photographs of the tools sitting in my apartment in Georgia where I had moved from in order to remember them and that did work to some extent to reconstruct mnemonic tools from those photos. They would not have worked as the actual tools however, because the photographs are not where I would see them in the every day environment by the nature of where I automatically look – and therefore, I would never end up seeing them when I would need them to remind me of anything. I did get another red car, couldn’t find a little Mario figure but did get a Luigi to put beside the computer and was able to reconstruct where push tacks should’ve have been located to tell me to use the door to go outside. Some of the other tools can only be replaced by eventually going to Georgia to get the brain in a box with my backup mnemonic tools because I literally don’t remember them and what they represent until I see them in my hand or in the environment around me.
5. The strategies that have made it possible for me to live independently, to continue to function successfully on a daily basis, to work on building a business and to continue to learn and get better are numerous but basically include a “circle of support”, others helping me to visually map out places where I am or where I must use them (like grocery stores and other public spaces), walking to and through those spaces after someone helping me to map them, photographing those places where I walk to go somewhere and creating landmarks that I can use within the community where I can get my bearings and talk to people there that know me. This was certainly easier in Georgia where I had knowledge of many areas but still required a lot of these things when it came to actually using those spaces, living independently and doing so successfully. I typically didn’t go to malls or to places where there were massive numbers of people because there is way too much information coming at me all at once to use those environments successfully, although I did go to some malls occasionally with family members and at one point had tried to get a dog that could be trained to help me do it, but he had hip dysplasia and the guide association wouldn’t train him for it. So, I didn’t go to concerts and ball games – or large conventions or dragoncon or any number of other places that I might have very much enjoyed if I could’ve done it and still remembered my own name once I was there.
6. Some of the circle of support strategies that I use are not in the same sense as those described by groups helping people with head injury, stroke, autism, alcoholism, anorexia, ptsd or other mental difficulties because I map out people that I need to know in my circle of support rather than to have some social worker or caregiver do it for me. Since I need to know the people who run nearby stores, so I know what their voice sounds like and they know I live nearby – I go out of my way to spend time going there, make an effort to speak with them at least a little more than saying hello, and have someone go with me that I know who can show me where the places are in the store where I can walk and where I cannot. A shelf filled with things does not necessarily represent in my mind automatically, a place where I cannot walk in that space and rather than walk into it or fall over it as if it is not there, I rely on watching someone I know navigate the store – their shape and voice is recognizable to me and I can trust that they will move where they can move and not into a shelf that my mind may not realize is there. That allows me to map out a space and understand where I can use it and how to use it. That is true for the circle of support for me, that I work to learn who the neighbors are, who the nearby store owners are and owners of other places and resources in the area or in places where I am likely to go – in this case, the Staten Island Ferry, St. George near it, the Battery area on the other side, and in a few areas of New York City proper where I might need landmarks to regroup and find my way.
7. Visually mapping other places with the help of others is one of the biggest strategies that I can use to be successful living independently. But, it is only one of several – my daughter helped me to learn the buses and subway system here, how to use the ferry and how to find the maps in the stations, how to tell what train it is and what to do if that might be the wrong train to get help and get on the correct one and how to find what that would be. Those are very valuable parts of using an environment to live independently and I certainly did that in Georgia as well. I have to know what the things look like around me, if I am to use the sidewalks there and cross over to other streets. Nothing inside my head tells me what that street sign means in a greater relational sense as many people can do. I use visual markers to tell me the same things. And, I am very fortunate that I can learn some of those relational things even if I do have to do it in visual ways rather than by street names and parts of the city. I can use maps as well, but the jump between what I see on the map and what I am seeing at that place is not connected yet – I am still learning how I might connect the two in practice.
8. For physical functions, I use a stick which can be a broom handle or a closet rod bar of wood to throw between my hands from one to the other for a ten minute set of exercises involving doing that, to have use of both my hands. It has worked for some people using a ball the same way, but for me to see it and feel and understand it, my exercises with it came from a combination of martial arts exercises that I found in a book added to someone telling me of the occupational therapy and physical therapy exercises their family member was using after having a stroke. These exercises make it possible for my right hand to work and by shifting weight on each foot as part of the exercises and moving them with the series that I have learned, my right foot and leg responds to me as part of the circuits available rather than being offline from whatever I might need it to do. I have a small mirror that has a frame to sit on a table where I can literally see my face for exercises that my children used to call “mama doing a thousand faces again” – which give me use of both sides of my mouth and face rather than just half of it. A neighbor with a stroke apparently does these same exercises when her visiting occupational therapist comes over, so I must have years ago found them in a book from the library or someone telling me about them. They work very well as long as I remember to do them and there is a set of mnemonics that I use to literally tell me both to use these exercises to help myself and that remind me of how to do the exercises and what they are. From speech therapy when I was very young, I use those exercises re-worked for my own needs since the head injury to speak clearly and form the sounds that are the letters and words that convey things.
9. Unfortunately, my history with others has been fraught with domestic violence against me, traumatic experiences, and really bad choices of my own about ways to handle those things with alcohol, anorexia, bulemia and rage – so today, I use a number of strategies and tools that help me to deal with these things in other ways including, writing about what I’m feeling and sometimes when I know what it is – I write about things I’m thinking that are on my mind or of concern to me – rather than keeping them inside. I have spent many years in Georgia attending support meetings for alcoholics and used a number of the available resources to work through my anger, bitterness, sorrow, resentment, grief and hurt such that I wouldn’t have to act out on such things. Through these I have a lot of tools and strategies that I also use beyond writing down things or talking it out – including being honest with myself and others, asking clearly for what I need, accepting disappointments and letting myself feel them and letting those feelings wash through me without trying to run away from them or change them, and ways to deal with flash backs from traumatic experiences I’ve endured. One of those has several mnemonics to remind me that “today is not that day” because if I can know that beyond a shadow of doubt, the other becomes no more than an unpleasant memory of a time past and not interlaced with the experiences and people and physical attributes of this day now. I threw out my scales which went farther to take away my own anorexic and bulemic thinking than any one other thing and when my daughter brought a scale into her apartment for her own use, I specifically work to ignore it and place it away from those things I would typically see on a daily basis. I’ve learned to ask others, including my own family members that get so angry at me for asking – that a tv show with specific views of traumatic events too closely similar to my own experiences be changed at times when I cannot remove myself from hearing it or seeing it. My daughter’s apartment makes removing myself from viewing it or seeing it almost impossible without leaving entirely out into the 20 degree weather or the 95 degree weather or rain or whatever – so it has not always been possible for me to do anything but to ask her to change it. No matter how she might react, I can now actually ask her to change it anyway and for many years, her angry outbursts from me asking would have prevented me from ever asking. So, that is a very powerful tool, just to be honest about it bothering me and ask that it be changed or done some other way – but I haven’t always had that tool available to me.
10. Long ago, I discovered that loneliness, sadness and the walls closing in on my physical pain and emotional sorrow, could be changed by finding ways to help others and by interacting and participating in a greater world beyond my walls. I use the internet to do many things as tools to help me including those two – by writing on my blog and relaying information through twitter and my blogs, sometimes in some ways, I can help others and certainly know that I am engaging as a participant in a greater world than my own. The internet has provided a place where I can learn as well and I often use it that way. It provides places where I can express my art and knowledge to places far beyond my local streets where it is hard to find ways for people to see or to know about any of it and it has provided ways that I can help others as well especially during times that my abilities to problem solve and uniquely suited sets of knowledge can add to what is available for helping resolve difficult complex national, regional and international situations whether it is preparing for a hurricane or solving the oil disaster in the Gulf of Mexico among others. When I sat in Staten Island with a hurricane coming and thereafter, I was able to use this to help myself and to help others by simply walking to the borough help office to get some information brochures about what to do in the event of a natural disaster and give them out to businesses to distribute as I walked back to my daughter’s apartment. I knew the brochures existed and where to find them, I could walk there and I knew to give them to stores and places that would further distribute that information to others affected by the storm and the flood surge that came with it. So, I did that – it is a tool that helps me because then I am not lost in my own difficulties, my loneliness and alone-ness disappears, and my personal frustrations are set aside awhile as my spirit is nourished and strengthened by participating as one person in many greater efforts within the community to successfully confront some difficulty – in this case, a natural disaster of hurricane sandy. I have done a lot of this online over the years and it has been a valuable tool to me at the same time, helping others.
11. 3×5 cards are a big tool I use. When I was relearning to write, and relearning over and over again – to write and to read, one of the biggest tools that I had was 3×5 cards and a pen to write recipes down from magazines and other family members for my own kitchen. That helped me to manage holding the pen, form the letters, remember what a teaspoon of something is and what the words together mean when reading them. After many years of doing that, I created another tool with the 3×5 cards that I found in a book somewhere about doing the things each day that I would do if I were rich, which means, that I wrote each thing that I would need or want included in each day on a card along with the day of the week and date, then each morning write the card again the same and check it off throughout the day. For a number of years, I did that and recently had to find some of those cards which I brought with me to New York, so that I could do it again for a few days and remember other tools that can help me. On my cards, there was everything from take a bath, to painting and computer work, to interacting with others and taking a walk. But, over the years of making these cards, I found them to be one of the best tools for daily living. It renewed my ability to write, it reminded me of the things that I decided were important to do in each day and it incorporated things with a longer term focus beyond today that I could have in no other way likely remembered – from painting to learning and working with the computer and with business stuff. As I said, it is easy for me to live in today with no memory of anything beyond it unless something reminds me of the past or of the tomorrows, and it is easy for me to not remember anyone beyond those I happen to see in a day even my own family members. The phone never worked as a very good resource for me because not only do I not remember who I know that I could call, but since I cannot see the person talking – it is extremely hard taking intense concentration to make out what is being said even by those whose voices I know (in fact, using the closed captioning tools from the television has helped to make that connection easier over the phone between sounds and the words they are part of) and because the phone, never tells me it is there in a way that I might appropriately use it as a tool. Sometimes I answer it because my mind interprets the sounds it is making as something of note and sometimes not – very unreliable and extremely hard for me to use. I have discovered that I could do more with it and with apps on it than I have been doing but that isn’t practical yet. The google maps app didn’t make sense to me once I was in the city trying to relate what I was seeing with what the map was telling me about where I was standing – there is not a reasonable relationship in my mind that connects those things yet, so landmarking and visually mapping areas by physically going to them works better so far, but I am working on that.
12. One of the tools that I used successfully for coming to New York City and staying at my daughter’s apartment in Staten Island was to prepare adequately for it by seeing it and learning everything from where her apartment sits ahead of time (with her help and with the help of others, neighbors, and my other children during their visits there.) By doing this, I could visually map out everything from the walk down the street to the bodega and bus stop to the grocery store that is several blocks away and using it to buy groceries, to using the other buses and trains and subway system and ferry in order to go places and what to expect to do in order to find my way – how to ask others, how to find maps, where to find people like police officers or doormen or others to ask, and very important other things like what is found at the end of street in both directions, where to find the library and borough offices, and how to use the cable tele stations to get the local news and weather. These don’t seem like such a big deal, but they are a big part of what constitutes a network of resources for me to function successfully in any environment, but especially one where I have never lived before. The other set of tools that I use to be capable in a new environment, is that beforehand I brought some tools here to Staten Island to my daughter’s apartment and learned the interior environment of her apartment including putting tacks by the doors and learning how to cook with her kitchen, and place mnemonics where I would be able to learn the interior environment (which then ended up being moved by people, but it did allow me a better chance of knowing things about the interior environment that I couldn’t have otherwise learned) – because this was done ahead of time since our intention was for me to rent her apartment as my living space and she would have moved closer to where she works, I had a very good chance of using this particular apartment successfully once I would’ve been here alone. But, it didn’t work out that way, since the section 8 voucher workers refused to allow me to use it for this apartment due to the fact that the Department of Buildings called it a commercial rather than residential location. In fact, when the apartment directly behind it came available, they wouldn’t let me use the voucher there either saying that the Georgia housing authority had refused to extend my voucher a few more days in order to find a place successfully. To live anywhere successfully, I have found that it is better for me to learn the place ahead of time as a vital tool including having someone else help me to learn how to use those particular kitchen things from the stove to the overall strategies that the kitchen’s configuration demand (that is harder than it would seem, but a single sink kitchen requires washing dishes in an entirely different way to be safe than one that has a dishwasher or even a two basin sink available – and every refrigerator is different, as is every microwave and every set of cabinets – in this kitchen, dishes like plates actually don’t fit into the doors and have to be wedged in without breaking them – obviously not chosen by anyone who ever made a meal or washed a dish.)
I hate to think that after having done all these things and worked to keep my bearings, that I have failed and now am essentially homeless except for staying on my daughter’s couch. My business efforts have been a dismal failure, though it certainly hasn’t been for a lack of trying. It looks like I would never be able to make any of that work, and certainly would never be considered a person worthy of the risk to have any real backing for it either – all things considered. I don’t know how I could work at a place outside of here where I would have to use all these tools to learn the way to it, find the job, get the job, and then learn its internal surroundings and be able to apply my skills in a highly distracting, unusual environment so far beyond my base of knowledge and still function. The more stress there is, the more tired I am and the more I’m having to process other information that is commonly found in business offices for instance, the more my ability to function adequately suffers. That means, about the third time someone asked me for something that I couldn’t figure out what they were saying or what they were asking for, I would be incapable of typing on the computer, answering a phone or understanding that route to the bathroom or anywhere else in the building. The first tools I would choose at that moment would be “out” and find the exit signs to get out of the building to somewhere I might know wherever that would be and physically taking myself to there with every last brain cell that could operate and interpret anything around me. That is what has happened to me in malls – in big discount stores with a lot of distractions, in groceries at the checkout line waiting with too much information and noise and distraction – and what would surely happen to me in an office where once more thing I couldn’t understand hit me in a short period of time. That is not a place where I could hold my own playing politics and dealing with back-stabbing fellow employees, unreasonable managers making impossible demands and gossiping cruel jests – etc. ad nauseum. I would quickly be a detriment to such a situation rather than an asset and I really don’t know how I could increase my chances of finding such a paying job let alone how to successfully have my own skills available to me and to them within the context that these offices and business environments have set up.
That is partly why I get so miffed so much of the time about my financial poverty level situation – because if I could use my skills at the level they can be much of the time with my adaptive living environment and online from that environment – I could make a living just as everyone else does for themselves. It would seem possible that I could buy a house in my lifetime and a car and have my bills paid from my own efforts to support myself, but no – that is a failure too so far. And, it does add to my frustrations in every day, because I know that I should be able to do that for myself and my family at this point. I’ve made the efforts to do so and continue to that over many, many days of wanting to quit even trying. Why would others from the SBA to NYCHA to Marietta Housing Authority to every single foundation set up to help people like me – make it so impossibly harder? Why would they do that? Why would all of those handling all those moneys and resources in the name of and for the purpose of helping people like me – get to be paid so many thousands of times more than anything I would ever get from any of it as a person with these disabilities so that I can do well and survive? Why is that? It pisses me off and would have to piss of others like me that are getting the same kinds of experiences with all of it that I am – and that would have to be countless numbers of people with disabilities across this country. Since, in 1990 there were about 85% of people with disabilities unemployed and without their own business to support themselves and now, in 2013 that percentage has risen to 90% of those with disabilities unemployed and without their own businesses. That isn’t an improvement even though literally trillions of dollars have been given to do these very things for people with disabilities – in every state, every city, every country, every region and nationally – both in government agencies and through foundations and charities. How could that be? How dare they do that with the money? If, at any time – I had been given the $350,000 a year plus the $400 a day plus umpteen hundreds of thousands that were spent on studies of people like me living independently in the community – I would’ve never lived in poverty, never needed the crumbs of the SSI and section 8 programs – and would have been able to do any number of things of greater accomplishment with my life and my efforts as well as having provided myself a place to live independently in the community successfully. What right do these people and organizations and agencies have to get paid in the name of the disabilities that I have and that I endure on a daily basis and through which I work every day to extend myself beyond? They aren’t helping. They certainly aren’t helping in any ways commensurate with the vast resources they are being given and being paid in the name of helping people like me, including me and the specific areas of disabilities I have.
I will put on the next post, what happened when I tried to transfer my section 8 voucher to New York and find a place to live here. I had written it as a letter to go to the Marietta Housing Authority but it is too long and my family can’t even get through reading it so that it can be re-written properly and it couldn’t be sent to them. It does however, express a lot of what happened and why I am essentially homeless today. It doesn’t describe some of the things that I’ve lost as a result of trying to do this – including having to let the America the Beautiful Show and Mad Scientist Group projects go because I couldn’t afford to pay their internet fees, nor does it describe the entire studio of things and materials and books and equipment that it took me years to acquire so that I could paint, design, and have a business of my own which all had to be sold for nearly nothing in order to come here – and it doesn’t describe the fact that I’ve virtually lost everything trying to do this move while those in positions of authority concerning the resources that should’ve been available to me to do it successfully continue to deny me access to any and all of those things – although I’m sure, if I wanted to go live in a mental hospital and be subjected to 27 pills every day to live as a fully un-functioning vegetable – that they would do. That is so wrong.
Anyway on the next post, I will post the letter that tells the story of what happened moving to New York City, the way section 8 in the hands of Georgia’s HUD program did it in my case –