Tuesday, October 6, 2015
The Social Isolation and Turmoil of the Disabled
I and a disabled friend were talking about being disabled and how it can lead to isolation in this society. I asked her to write down some ideas and I would respond and make an article out of it. Being disabled in this society is tough!
Often you will be left out or people will view you with pity. One difficulty I ended up facing is some people would see me as a project or someone to "pity", and did not see me as a equal human being. While a disabled person may want friends, be careful of those types. Stay away from people who think they are superior to you and do not see you as an "equal person", they will hurt you bad. This is something important for disabled people to protect themselves from.
While older people have senior centers, us disabled even into our late middle years are barred from such places in many communities. My last one let me take the occasional class while this one says no can do until I am 60. It is strange to me how older people who often still have intact family circles, are given these social opportunities and the disabled are given none. Unless you have a developmental disability and parental support, the otherwise disabled, are left hanging loose in the social world. Even the church world caters to the seniors leaving the disabled out. Remember that church I attended? They had this over 55 group where the seniors were invited to eat lunch and more. No one invited me even though I am pretty late into middle adult hood and not that far from the age cut-off. They didn't advertise the meeting times either. Where's the group for the middle aged and disabled? There don't seem to be any.
As many of you know we have considered moving from here, our social fortunes have been so poor. The available medical care has kept me here but visible disabilities have affected things for me. While some people are patient and long time friends understand, many newer ones do not. My friend from college visited me this week from out of town, and she understood when we went to a nature center, and botanical garden, that my walking would be limited. Others would not be so understanding and such limitations would bring anger in them. I had some relationships with people collapse once they knew of some of these limitations.
I'll let my friend tell things from her side now, her words in blue, and mine responses underneath.
She wrote, "It would be a complex article; electric wheel-chairs or power chairs no longer get approved or paid by Medicare or Medicaid now. I couldn't get one! If they DID approve you, it costs you at least $1,000 dollars now. People don't realize the liberal Democrats and Republicans are all cutting Medicare, Medicaid and social security. We are ruled by huge billionaires and mega-corporations now. THEY don't want those programs! Neither party! So political parties aren't that different."
I have written how Obama always goes for the jugular of the disabled, on this blog. All those programs are cut. Being able to be mobile does indeed affect one's social life, as not being able to walk impacts the disabled persons life. I had a scooter for some years, but we never could afford the lift to put it in the car and it was very physically demanding for my husband to get it in our van, and as he aged, he wasn't able to. It broke down from age and had some problems even early on--I suspect they sold me a defective or used one in Chicago.
The disabled people you see scooting around with nice scooters, are wealthier people who can afford repair for their scooters, the scooter itself and nice vans and lifts. There was many times I had to turn down going somewhere because it was "too much walking". I haven't been in a shopping mall in years. Going to some festivals, flea markets and even conferences was impossible if they were over too huge of an area. For years I could not shop at Aldis, or Save A Lot though now I can, because I can walk just enough now to pick what cheaper food I want. Socially I was barred from many events due to these mobility concerns and I am sure my friend was too. The same people who ignored these mobility concerns ignored concerns about weather too.
"As for public transport, many communities don't have it! Ride Source is "federally mandated", but in many cities it does not exist. It is not there. The disabled still have to find taxis, buses or family or own private cars equipped to transport them. You can't really live in a big bad city. There won't be any Ride Source. Ride Source in San Francisco does not work."
Transportation troubles are huge for the disabled. This is true. I lived without a car for 5 years in Chicago and it was hell on earth. I have cried worrying about losing our car. The paratransit sometimes would abandon me for hours. I remember one day when I was left at a library in Skokie IL and could not get home. They had basically given up sending a van out to pick me up. I had to hitchhike with a woman I asked for a ride. Hitchhiking for me became a new normal as I was left trapped in so many places unable to walk as long as everything required. It took me hours to find someone to give me a ride, and no taxis were showing up because we had moved into rush hour time, to get to the bus stop to find my way home. I remember not going anywhere for years because it was too hard and physically demanding to get anywhere. I had my severe weight gain and barely could walk. Many of the systems are broken.
Our car is getting very old, and both I and my husband are scared because of this as the rich narcissists live in luxury, why? Because one day we called the local "Ride Source"-- and they did not show up for HOURS. They serve the inner city area here, and our area is put last. We had to give up on where we were going to go. This is scary business for people who don't walk well.
"So that alone, can keep anyone disabled from getting out of the house. You need a private car to get out--or else, you can't get out!
This is very true and often people own cars where even a ride can be hard to get. If it's an SUV that is high up with a foot railing or a Jeep, I can't get in it. Sedan's that are way too low, same thing though in my case, I can get in and out of some of them. This is something that affects my life. If someone I know has a bad car for the disabled, then I can't get a ride.
Even if you manage to get out of the house, there can be other barriers. I am not wheelchair bound but I cannot go up a flight of stairs, if there is a lot of stairs there, forget it. Sadly that is too many places. One art club in my old town, I could not go because they held it in a musty basement down a steep flight of stairs. I've had to cancel visits, because walking was required or stairs were there. Once my husband took me to this political meeting he was covering on a subject I was interested in, and they had a dinner there, and I was forced to sit outside in the car instead of going on inside to eat dinner. One lady was nice and brought me out food, but this reminded me of my disabled status far too much. There is a writing club held at another church in this town I can't go to because it's down a long flight of stairs. I would ask, "Can you move upstairs?" and always would be turned down. Some have asked me "Why don't you try other churches?" There are churches in my community I cannot attend due to barrier issues. Even at the church I attended, I had to sit in a special chair they moved behind the pews which were too low and close together.
These physical barriers definitely impact some of the social ones.
"There is also the "social-rejection-pain" overlap theory. This is where people actually become sicker and suffer physical pain and illness from social rejection and rejection can come from being disabled. You could say, many disabled have it. It's complex too. I think they mean "family rejection trauma" but I think your generalized "social-rejection" could do the same thing.
Social rejection creates physical and emotional illness. And for many of us this starts young, our kinfolk reject us. So that theory is true. Many ACONs can attest to how our early rejection impacted us. One thing with the disabled, they present these loving caring families who all rally around the disabled person, and yes those families do exist, but there are many where this does not happen. The ideals of television do not carry into real life. The child is considered a "burden", a "disappointment" and a "problem". The older you get and if you "don't get better" or your health problems "worsen", it's like people "give up on you" and walk away. This is happening to me, I can tell the attitudes since I was in my thirties have changed since I have entered my late 40s. When I was younger the impossible dream of weight loss was held out. "One day five hundred pound peep will get herself together!"
There are many families like my own where the disabled are just seen as afterthoughts. To narcissists the disabled are poor narcissistic supply and not children they can use to brag on. Some engulfing narcissists can use a disabled child or adult to play martyrs and Manchusens by Proxy with. When a disabled child or adult has a will of their own, then that situation will end, you are not useful to them and you become discarded and devalued.
Many disabled people are abandoned by their families. This is one thing you do not see discussed in society. In the world of the disabled , there many severely lonely people who long ago lost family support. There are higher expectations for the people who may become disabled later in life, like in their teens and 20s. Some of this rejection is worse, because while society insists on a parent accepting and loving a disabled child, someone who is disabled in young adulthood doesn't get that back up. If you are middle aged and disabled, and have not been "cured" or have lifelong chronic problems, then people consider you a "lost cause" instead of realizing a valuable person is sitting there. They forget about you. If you are living on a fixed income, there is no money for traveling or reunions with them. You become strangers.
"I even notice your economic level may decide how disabled you become. I bet fewer rich become disabled. They are rich enough to prevent it, or to get medical support. It's easy to get disabled if you are poor. There is no support. The rich still get the best medical treatment even in nations of socialized medicine. Being disabled easily gets you isolated for several reasons; the disabled [and this includes poor and disabled seniors a lot, get ignored. and avoided by everyone."
It's true, the poorer you are, the more disabled you can become. I often have thought what would have happened if my lipedema got discovered earlier? Life in stage 1 or 2 would have been far less disabling. Many poor people have far less medical insurance, and have medical problems that go without treatment. I have made the choice to stay in a community with rich people in it, which means there is far more medical resources. There is the sad reality that many people died young in my old town because they could not afford or acquire the same degree of medical treatment.
Becoming disabled happens far easier among the poor too because their jobs are more physically demanding and less forgiving of smaller differences or problems. A man with a bad back can keep a corporate desk job while a man who has to do construction or work manual labor is far more in danger of disability. Lower level jobs do not allow for sick days or time off to see doctors. One week in the hospital means being fired to many lower level jobs. One day with the flu means losing your job at McDonalds or Wal-Mart.
As for being avoided, it is another sad fact. People do not want to be around the disabled. Our pain and trouble "bothers" them. For those of us who came out of narcissistic families, we especially feel the early rejection that came. Some of us develop coping mechanisms where to be socially functional we will hide high degrees of pain and suffering but this can backfire on us, as the expectations and demands remain high and we fail to meet them. The other day I told my husband, "People have always expected way too much!" Inside I feel the rejection, it is something always there for me. Even with the ex-friend, as she started complaining about my weight and how "hard it was to be my friend", I knew the "friendship" was on the way out. She didn't care about the person I was inside.
Many disabled people can end up totally alone in our society. I have been totally alone before.
I am fortunate to be blessed with a husband that has stuck by me and is loyal and loving. I also had my close college friend of 30 years just visit me. She sits by me while I lay down sometimes for 3-4 hours during a day when she is visiting. Many disabled people are abandoned by everyone. Some people get sick and the husband or wife leaves. Some have few or no friends. I tell other disabled people like the disabled people I see at quarterly meetings in my community, we often have to reach out to others in our boat too.
"And now Baby-Boomers, as seniors are the biggest new source of disabled people and their Medicare and Medicaid is being destroyed. We're not like those Russian peasants you hear of, who are so tough, they are still running around gardening and farming at 70--why? Because all of the weak or sick or fragile ones all died off. The Russians and many nations use "social-Darwinism"--the strongest prevail. Which is now happening in the USA--the richest prevail.
Yes the richest prevail here. Rich and disabled is a far different story then poor and disabled. It is true in other nations, the disabled are just allowed to die off. America paved the way with social security in help for the disabled but not it is under attack especially as the population ages and the elites want more of the money for themselves. Russian peasants had a more simple life on the land and close social ties that kept them going. Social ties which have been destroyed for many in America.
I think about this one friend in this town, who had to have a quadruple heart bypass, and hurt her back. She was in bed for months from the heart surgery and the bad back. She did not lose her job, she had 20 years in with a big corporation, and she had family help her out. The family nursed and cared for her and one sister who lived with her cleaned her house. She later helped them in return. Many poor people without a decent job and medical insurance and without a loving and caring family in that situation would have died or ended up with their whole life crashing. That is one huge loss for us ACONs, a loving family to help. Many of us knew we were on our own from very early on.
The Social Darwinists are taking over here. One hears their words in the Republican party. "Go die in the gutter!" The one local ex-friend told me, that I was a "slave" to social security. Her family helped to support her and she lived in a house of a deceased uncle. Her personal social safety nets never faltered as she trashed me for hanging on to the thread offered by our government. I suppose by her Republican inclinations, I was supposed to give up my social security check and go die in the nearest gutter.
She was not a rarity though. I have faced this time and time again. In a group of people, one lady insulted everyone on welfare. People have said such things to my face without one moment of empathy. "Go die, you cost the state money!" Of course such types never question the bankers and their trillions in cleaning out the till. One thing, fellow disabled folks who are reading this, I hate both parties, but avoid anyone who tries to guilt you over being on disability, they are not your friend. There are people who can breathe and have no COPD issues and weight 150 pounds less then me who are not hired for any jobs because they are "too fat" and don't have a "professional appearance". I am now going to use disability put-downs as a "red flag warning" to get away from someone. If they have these mean and nasty attitudes about the disabled they are not going to be part of my life. These are the kind of people who cheer on the rot in the system and vote for people who will contribute to everyone's demise.
It is ironic to me how some would trash me for being disabled, who often got plenty of outside help of their own or support. The same goes for my mother with her nepotistic government job and insurance pay-outs. One form of abuse I had right before I left the family was I was abused for being disabled, and they would post things about "lazy bums" on social security disability on Facebook. Much of this was meant for me personally.
"Lots of things contribute to disabled people getting isolated, our American lack of family support. In other primitive cultures, families tend to stick together more. In America, families spread apart, and themselves became isolated and broken up."
This is true, families don't stick together anymore. Family systems are breaking up. Relatives are like your distance school mates on Facebook, you barely know them anymore. They are just there and you haven't seen them in 10 years. One thing that is very hard for me is to see families here where everyone is connected like they were 30 years ago. I ask myself "What happened?" I realized that my sister has nothing to do with my brother and his kids. There is intense selfishness and people who just don't care anymore and you can't make them care. Everyone was forced to move too much. Family and extended family is breaking up in America. This is one reason you see abandoned elderly people who have to turn to the state or end up in the nursing home because no one will take care of them. Even the ones who have nieces and nephews and sometimes even have children are left abandoned.
"This country and society have become very "anti-family". Corporations, employers, businesses etc, only want to hire the YOUNG. They only give support to young, nuclear families, not extended families.---and once employees get old, they are fired [not retired] and can no longer get work."
This is true, getting old, can be your 40s. I saw what happened to my husband who was thrown out as he got older and slower and couldn't do the 14 hour days as effectively . One thing I notice when eating in "yuppie" establishments on rare occasions, is most of the comfortably employed are young and thin and have a certain look to them. Many young with the millennials and Generation X have no jobs but the thin sliver of the ones getting employed all look a certain way. They are all healthy and thin. It seems even a certain amount of beauty beyond good grooming is a requirement for a good job today. The halcyon days even of inclusion for the disabled where you would see someone in a wheelchair in company advertisements seem long gone. This is no longer mentioned. When I was young in the 70s, inclusion of the disabled was a big thing but you don't see it anymore.
"The work society also rejects hiring the disabled; most disabled, can't get hired even if they can do the job! People with autism routinely get turned down by employee screeners or agencies, solely on "personality" alone. Even though it's illegal to discriminate against the disabled in hiring, it is done everywhere anyhow. The federal laws against discrimination in hiring are worthless."
This is so true. Even small health problems can cut someone out of the running. I believe the whole job system needs changed and the way people are hired and fired. Should people have to go suffer in severe poverty for being "different" or "not being liked" by the boss? Yes autistic people as well as many others are left out. Being hearing impaired, or overweight can make becoming employed nearly impossible. Our society is actually getting into a mode where only an elite sliver are being allowed employment that actually pays the bills and perfection as deemed by the system is the price of entry. This is one thing I noticed, years ago a man who was a little bit eccentric, could hold a job if he was peaceful and drug free but today that same man is relegated to the streets. "Personalities" are discriminated against with the line, "You're not a good fit, so go starve now!"
Many are complaining that too many people are going on disability but they don't look at how the job system is run. In my case I cannot work, even if I wanted too, due to the breathing and stamina issues, but many people who otherwise "could" work are running fleeing to social security because the job system is so damn punishing to them. They aren't being allowed in. They are being deemed too "imperfect" to get a job for just having a minor health problem.
One example of this was the hell I went through just to get a job when I was midsized. This hits home even harder for the poor where many of the low level jobs require that someone can stand on their feet without sitting down for 8-10 hours a day or move heavy objects. My feet would scream in pain working at a fast-food restaurant, for 5-6 hours a day. The older people get the more impossible working jobs like that gets too.
There are no more job programs for the disabled where jobs are set aside for them. They expect you to compete in the open job market. Some times people with disabilities who are computer geniuses can get employed but that should make you wonder why you have to be savant just to be able to support yourself?
"Try being disabled, without a job, no money and see how isolated you become. Shut-ins are usually poor. Economics is often at the bottom of many problems. This includes cures, treatments, interventions and equipment. "
Yes isolation comes with all of that. When people have no money, this means no money to travel see people or buy anything. You are seen as a "taker" instead of a "giver". People don't see you as "contributing" or "pulling your weight". You may do a little bit of volunteer work but you are not seen as a "productive" member of society. If you do not have money to go places and see people, then the relationships can be very tested. I often have dreamed of winning the Lotto, just so I could see people I miss. Economics does impact one's live very much. Many shut-ins are poor, this is true.
With my friend mentioning treatments, I am going through some weird grief recently. Since I got the digital hearing aids and can hear people for the first time in 10 years, I am mourning all that lost time being lost in the deaf fog. My amplifier hearing aid helped some but I need the word clarity especially in my case with my type of hearing loss. I think "Why didn't I have these hearing aids 10 years ago?" I am very happy for them but there is that twinge of sadness! Many disabled people go without needed treatments and medical care.
"If the disabled had Economic Clout, their lives would be a lot different. And disabled organizations most often have no political or lobbying power. No powerful sponsors!! Those disabled who are rich, ignore their poorer peers. The famous actor, who played. "Superman" became paralyzed, was said to be a God-send to the disabled community. HE HAD POWER and used it for the disabled agenda! Many disabled prayed, "Please God, make more movie stars paraplegic!" Complicated isn't it? Quit a complex subject. "
Yes if there was economic clout, things would be different for the disabled. People who are poorer can't advocate for themselves as well. The disabled organizations are very low on political or lobbying power. Even for different conditions one can see the wealthy and worried well pulling their weight while ignoring those who suffer more severe forms of a condition. I am glad that Christopher Reeves helped the disabled too, he did bring the problems of those who had suffered spinal cord injuries to the front. Lately Kathy Bates is exposing the problems of lymphedema. Sure people want more powerful spokesmen for their cause!
"I might add this American social ideal of running around, everywhere, joining clubs, doing charity work and having outside hobbies all the time---BUSY, BUSY, BUSY as if you were an 18 year old is hard on everyone--except the 18 years olds. This is a burden the disabled having in America. We can't keep up. The rest of Americans are tired especially as you get older or are disabled. People with full time jobs are tired; people with KIDS get tired. The society's ideal of being "BUSY, BUSY, BUSY" all the time is a false one. Two job families are tired."
This is a major burden on everyone but it does burden the disabled. Many people think the disabled person has endless free time, and think it can be utilized but they don't realize how exhausted you really are. If you are disabled, you can have others try and volunteer you for charity projects because they see your time as "free". They don't realize hours are spent even on health related activities or how life really is when you are collapsed into bed. People have expected me to function at the level of a normal and healthy person and have gotten angry when this did not happen.
Many Americans now run around so much it's insane. I see them on Facebook, and they never stop for a moment. The ones who have good incomes seem to spend a lot of them just on being busy even for things outside of work and the kids are so over programmed, I know they are not getting the "free days" of youth I remember when I would visit my friends. "What do you DO?" is the siren call of America and for the disabled surrounded by the busy-bodies of this culture, life can be even more exhausting. They see anyone who slows down for a minute as "lazy" so what about us?
"The society we live in has a big effect on the individual. The disabled and/or senior does not do well in an "over-industrialized, "over militarized", youth and material-oriented society. Quite frankly it sucks. This culture treat their seniors and disabled so badly. But this government also does that. It's only concern now is wealth and it's owned by the wealthy. Ditto Russia, now under Putin, many of their social safeguards under old Communism are gone.
What good can there be for any less- advantaged class can there be in a society where 90% of the wealth is up at the top and 99% of the population has nothing? If the working middle class is gone, those who are disabled or seniors are even WORSE off."
This society is hard enough for normal healthy people to survive in, so my friend has a point. It's focus on profit and war, means any vulnerable people get rolled over. The 1% does not care about the problems of the disabled or old. Sadly it's true as things get worse for the normal working person, things will become even scarier for the disabled.
Disabled people do need to advocate for ourselves. This is one thing we have to do. I think telling the truth about the disabled life is needed to face and confront these things. I think about my life as a disabled person dealing with my society and culture. I got tired of being told I was "less then" because of my physical and other problems. Even with the social isolation, I question it, and ask, "Why do things have to be this way?" They don't.