I love my church and in spite of some temporary difficulties, I still love my church and its members. At the moment I am completely demoralized and drained. I am having to re-visit some old territory I've been trying to leave behind for years. Some people act very strangely when having to deal with helping the disabled. The more severe the disability, the more complex the problem and the harder it is to sort out what is actually happening. I am speaking now, as the disabled person, having to navigate some very bizarre waters.
I have been offered transportation by my new pastor for those times when its raining. I loath this situation and would rather swim to church then deal with the problems of accepting a ride from the pastor, or anyone else. Rides are a problem, when you can never drive. The able-bodied community knows you can never drive and with 'good intentions' they strongly believe that SOMEONE should be willing (always) to share a ride, as long as they aren't the car-sharer. People, especially church people, fear being 'trapped' into doing something forever-and-ever-amen! Usually, once someone 'volunteers' to drive the disabled person, the rest of the able-bodied community breathes a collective sigh of relief. Now, they know THEY don't have to do it, but, thank God, SOMEBODY is doing it! The person who discovers this trap, eventually becomes angry. It is socially unacceptable not to 'like' helping the disabled, so they only have one other outlet. Usually done in a passive-aggressive, underhanded manner, the driver gets angry at the disabled person!
I almost got fired from a paying job over this thicket of unsaid hypocritical lying garbage. I didn't see what was happening. My boss had a BIG problem with my disability. (at the time, I carried a white cane, indicating blindness). She had to be 'corrected by my temporary agency supervisor to 'permit' me to go to the lady's room alone! My agency supervisor was stunned into silence when I called her for assistance with this issue. My work was excellent and I was an asset for the agency. With my supervisor's help, my boss at the job, grudgingly 'permitted' me to go to the bathroom alone!
This same on-site boss decided that since one of the other employees lived 'close' to my home, that we could car pool together. I don't know if the employee involved was 'requested' or 'ordered' to drive me to and from work. Things seemed fine for the first few weeks. I paid for gas, as I had no other way to thank her for the extra trouble of picking me up and dropping me off, each day.
Gradually, I noticed a change. People became silent when we entered the office. Something was very wrong and I got the distinct feeling it had something to do with me. Finally, the dam broke and an ugly truth tumbled forth from my boss.
"You know CyberGal, it is very selfish of you to EXPECT a ride to work every day" This is said so that all in the office can hear. I hadn't asked for, or expected a ride from anyone. I knew how to take a bus and did so on all my other activities, including work. I was taken aback and protested as much.
"I have taken the bus everywhere. You folks were kind enough to offer a ride. If there is a problem, I'll return to taking the bus" The tension rose markedly around me, as the able-bodied to able-bodied guilt-tripping stair-down games began. (I sensed a problem, but had no idea of the vicious dynamics being acted out around me).
"We can't have YOU take a BUS!" my boss cried out to the room. There was only one employee who lived close to me, and she'd complained that she wanted out of our arrangement. (She went to my boss, not to me.) I'd tried to give her an out many times, but she refused (to my face) to admit her true feelings.
"Patty is getting tired..." My boss trailed off and I got angry.
"Look. I've felt there was a problem, but no one tells me the truth. I'll take the bus from now on and the problem is solved. I take the bus..." I was cut off by patty's guilt-induced protests:
"I'd feel terrible thinking you are taking the BUS, but..." She halted this protest, as she remembered how she really didn't want to share her car.
"I'll have my husband drive me." (I lied), causing the tension in the room to vanish. I figured these people were to stupid to put it together about my lying, if they saw me walking on the street. I could always say I was going to my 'pre-arranged' meeting place. I knew from hundreds of experiences and out-and-out manipulations of people, that the vast majority of them are stupid beyond belief..
True to form, with a few well-planned lies. I took the bus alone, my job was saved and everyone in the office congratulated themselves for 'taking such good care of the handicapped'. If I sound angry, disgusted and a trace bitter, I am, on all counts. This situation is one where the person with the disability loses every time, no matter what we do. I loathe this problem, as in 52 years of trying, the only really satisfying solution is to rely on no one, come and go alone and pray no one notices.
I recount one of my favorite demonstrations of hypocrisy I've personally witnessed. I came to my old church on Sunday. It had been raining and several people were grousing at me, that someone should give me a ride. This is always my first cue to begin the "hussle to get a ride" game. I went to one of the assistant pastors, who lived north of me, but not too far afield. I saw her entire body tense up. She looked up at me and curtly replied: "Oh baby, I can't even get my own self here most of the time." and then she quickly vacated the room. Translation: Hell No! Fine. After checking with several other potential cars and getting much the same response, I gave it up and returned to my usual plan, I'd come and go by bus.
The next Sunday, it was pouring rain. I had about six blocks to walk, on top of the waiting around for a bus, so I got to church rather drenched. This same pastor's assistant grabbed me just before I entered the church and screamed: "Why didn't somebody give you a ride? Somebody should have... Oh this is terrible..." I cut her off with my contemptuous retort: "I asked YOU last week about a ride, you said "no" which is fine. Now, unless you want to solve this problem, shut up and let me come inside,"
For those of you who have recently become disabled, what I did is a big no-no. No matter what kind of garbage the able-bodied throw our way, we are always to be kind, compliant, submissive and GRATEFUL. To not be those things really angers the dear souls who want someone else to help us. I've never spoken of this issue in such stark terms. It feels wonderful to call a pile of social garbage, the stinking heap it really is!
As with most problems of being disabled, even the disabled themselves condemn one another if we dare to be less then kind, compliant, submissive and GRATEFUL. It has been crazy-making for me.. I am one of those rare folks who can't ignore the elephant under the rug, in the living room. There is a big lump and a bad smell. I am forever amazed how most people can and DO ignore that elephant. It makes me very angry. Sighted professionals refer me to the 'specialized' professionals who work with and for the disabled. These professionals refer me back to the general people, who sent me to them in the first place! The disabled community has several large subgroups, neither of which face reality. There are those in total denial, who equate blindness with having a broken arm. A hassle, but something totally do-able. Then there is the group that has given up completely. I find that I don't need their help in discovering MORE wrong with my world. I am amazed at the games we disabled play with each other. I have folks in my world, who hate me because I'm doing something with my life, but claim that with enough positive thinking, they aren't really blind. To quote my black buddies: "Say W-H-A-T???"
I have been through this dreary transportation thing many, many times. My early childhood experiences don't assist my adult attitude, as I was 'forgotten' more then once by my drunk parents. When I am engaged in looking for a car, the person attached to the vehicle is more like an enemy to me, I fight a tremendous inner fear of being abandoned again. I still have tears to cry over that one, but I refuse to let it start.
So, last night at church I had my first round of ride-o-romma. Person A made a huge issue of giving me a ride home. I finally accepted, figuring she'd tell me when she was leaving. Only after an hour of waiting did I discovered that she'd left without me! Then it was time to 'go fish'. My bad vision and messed-up emotional state don't help here. Person B, told C, D, and E about me needing a ride and I kept hearing that several people would give me a ride. I haven't visited this emotional nightmare for awhile, and I was over reacting. I kept apologizing, which really seemed to irritate pastor's wife. I wanted to sit down and sob. I was slightly sick to my stomach and so hyper. It is a feeling like, no matter what I do I'm doomed. Not an entirely rational reaction, but in some ways true.
Finally, as everyone was leaving the building my ride materialized. I'm not sure of the identity of the driver, but I am sure that I have some clean-up, and apology work ahead of me, when I return to church. I was given a message to pass to the still unknown driver. When I passed the remark about making sure the children were in the van. I was greeted with complete silence. (An oops moment, for sure!)
I got home shaky, angry, totally drained and emotionally wrung out. Unlike garden variety depression, this was a combination of re-processing old childhood fears and trying to sort out adult problems. I watched my mind trip over itself like a basset hound puppy tripping over its huge feet and long ears. I couldn't calm down. I wanted to find a good friend, curl up in their embrace and wait for them to 'make it all go away'. That desire lives with my hope for a money bush and being able to live at The Marriott as a permanent resident! Right, and now, back to reality. I do have wonderful friends. Church is helping me to stop over reacting, or at least to calm down a bit before posting a crisis email! Its okay to hurt, or be angry, sad, or whatever. It is, however unfair to your friends to collapse into their lives in a complete emotional meltdown. (And some people don't believe Jesus Christ is able to change a person's behavior! I may be irritating at times, but I could tell you stories, of the pre-Christian CyberGal that are very immature indeed!)
I'd written to a friend before leaving for church sending along pictures of my two proposed website designs, requesting his review. I also asked for encouragement, as I was totally overwhelmed with what it appeared I needed to learn before I could create a website. My friend went to the trouble of putting together an entire five page web site for me. He has iWeb, which I finally bought. It does most of the difficult technical work for you. My pastor liked the older-looking of my two designs, but my friend's design (from a professional media designer), looks modern, simple and eye-catching. I was moved by his effort and time sacrifice. He is a man with more life then time. However long it took to create the web site, was time he could have given to his family, or maybe just time to sneak a peak at a beloved Agatha Christie novel. He informed me that I was attempting to do too much too fast. The joy of a friendship like this is the knowledge that it is safe to tell the truth.
After thanking him for pulling me out of the emotional fire, I turned to the ride dilemma. I wrote a short version of this blog, but with a bit more emotional angst. I tried to end my email on something closer to a positive note, but I wanted to run away and hide. I ended with the observation, that maybe after some sleep, this too shall pass. I buried myself in Christian radio and eventually got to sleep.
What greeted me this morning was pure joy. My friend took more time to communicate his heart-felt opinion, that, sometimes people, even Christian people can be immature idiots. (Aahh, how that warms the cackles of my heart). He confessed his total unwillingness to go without his own car, because he hates to wait for people. He comforted me with: "I can only imagine how frustrating it must be...". Thank you for not telling me all about how you know the way I feel. See, my friends are all very special. They have to be smart to keep pace with me and my goofy ways. But the gift of knowing when your experience isn't even close to mine, is so wonderful. I never tell a totally blind person anything about their situation, as my vision gives my world a completely different set of opportunities and problems.
What a lovely email it was! Full of gentle care and a touch of playfulness. I am experiencing the joy of having friendships which truly work in both directions. I used to have relationships, I called 'friendships' but I was doing all the work. I was like an entertaining monkey with a Visa Card! When the money was gone, so were they! This friendship is so different. I share what I can and he shares what he can. It is lovely, healthy and a gift from God.
When my friend grumbles under the pressure of leading a Christian family and the responsibilities of child raising, I listen, but since I'm neither a parent, or the head of a family, there isn't much I can bring to that particular party. When I yowl about disability issues, my friend knows he can only walk with me so far. What a blessing! The truth really will make you free, as Jesus so rightly said.
While I have no bright new ideas on the above problems, I do have a better understanding of how God helps with and enters into our lives, when we remember: a) He's there and b) He is willing to teach, help, strengthen and inspire. It is extremely difficult for me to wait for anything. I have to attempt to sit down and quietly wait for something to develop without jumping in with both feet, running around in circles, only to confuse my fellow human beings. I also hate to be trapped into a never-ending-commitment. I can remember to pray, when the ride test comes around again. I do know that, until I find peace in spite of problems around transportation, God will run me through this test again, and again, and again. The faster I remember to pray, the sooner I will mine the lessons waiting for me. More of the old me will dissolve under the loving care of a God who is trying to re-make me into something wonderful, strong and emotionally mature.
1 comment:
tragic, but I was laughing mightily as I read this post.
laughing at the able bodied, not you.
retards, with their grudging, inauthentic "help".
f*ck their able bodied, grudging heart "help".
Oh, sister, I have been through all this and more.
People hate the slightest deviation from themselves.
Mediocre, they see all slacking as a temptation to persecute, and genius as a terror to kill or flee.
Ingrates, they shun the disabled, elderly, insane, as somehow less than them, reminders of how they disobey the golden rule.
broke lower spine twice. oh how all say, "have a seat, don't stand, sit down".
F_ck "sit down". Sitting is the worst thing a lower spine injury can endure, yet even doctors and nurses demand, "SIT!!!"
F-ck that shi+.
LAW OF DISABILITY: They don't want to hear about it. Don't accept their help, ever. Be self-willed, monstrously aggressive and self-reliant in your affliction, praising God and His mysterious wisdom.
God uses the weak to confound the mighty. You saw the psyche mani of it.
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