my story...
 

i am not invisible when dealing with certain of the different ways in which i have to operate in the world, esp. when outside my home. i have severe optical problems and often must wear both an eye patch and dark glasses. due both to MS and RSD, i use a fore-arm crutch to aid me with keeping my balance while walking. when faced with negotiating a large store, i often use a motorized cart when available to avoid the overwhelming fatique factor. i must also rely on notes to help me remember what has gone on and what i am currently supposed to be doing, due to memory impairment from both the MS and a stroke. i also have emotional lability which flairs when i am under stress.
i do not say any of this to get pity. i only say it to explain part of what makes up the complex person that i am. i do not ask for any pass but sometimes do need help. i do find that extremely difficult to ask for. when offered, i am cautious about accepting it. i have had so many people say, "call if you need anything", which has turned out to be either "don't bother me" or some sort of misleading way of just saying goodbye. please don't offer help if you do not mean it. that results in at best confusion and at worst feelings of almost humiliation for me. i cannot speak for anyone else. being so obviously different in a world which glorifies fitness and ability is difficult. i spent the first half of my life as a professor and then librarian. i planned to spend the second half of my life as a scholar and writer. i now cannot even read a chapter in the books i love w/o getting severe eye pain and often a crushing migraine. i must partition out my time on the computer in terms of an hour or two. i rely on the wonderful service offered by the Library of Congress which provides books on tape and digital formats. unfortunately, most of books i studied i was lucky even to find them translated into english. they are not available, nor will be, in the LC collection. so now i am starting over, wondering what to do. all this is made harder by the fact that i can't drive and live in an relatively isolated area. i rely on my room-mate for drives anywhere. luckily, she offered that as part of my moving here and does not mind driving me to dr.s and other places. i miss the independence i had with forms of public transportation but made the trade-off to get out the extremely stressful situation in which i lived before. i miss having friends close by, though. or even on the phone. it is easier for me to talk than it is to read or to write. i miss having a relationship, though at times i wonder what extraordinary butch would face the extra complications a relationship w/me would entail. that is not to say i indulge in self-pity, and i hope that this post does not convey self-pity. i am a femme generous of heart and mind, courageous in spirit, and i believe myself to be beautiful, as is every femme in whatever situation she find herself. every femme, every butch, has complications in life with to deal-some are more obvious than others. in a way i even count myself lucky-mine are so obvious that they do not sneak up on me or anyone else. i know what i have to handle, and i have found through refuge in the Buddha, the Dharma, and the Sangha, and in the Tao to have the resilience to face the expected and the unexpected. to change somewhat the mantra of Pop-Eye, "i yam what i yam, and i love who i am." i know that i have friends who also love me, hope to find more here, and perhaps that special butch who will also love and appreciate me.
this post is my story. thank you for reading it.
DamselFly

Belle - I think both you and Andrew bring up really good points about "normal" and the unspoken expectations/standards/rules. Its always been these things that were Bratboy's biggest obstacles. I may have mentioned this before, but he had to learn to read body language, facial expressions and to listen for tone when interacting. He was often a very literal child and I know he has had the same difficulty in online forums.

I think that sarcasm in an online forum is difficult for anyone to "read" unless they know the person making the post and can "hear" how they might say the same thing if in real-time. For me, if I am uncertain as to the intent of the typed words, unless its something that directly impacts me, I tend to move past it.

I had a conversation with a very good friend of mine not too long ago about how difficult its been to formulate an after-graduation plan for Bratboy. I had been told of a small college not too far from our town that has an outreach program for spectrum folks. I was really excited about the possibility of him being able to attend a four-year college with additional support on campus.

I was in no way prepared for the ensuing diatribe of how she didnt think it was fair that he could obtain a four year degree with what amounts to an IEP the same as another student who "doesn't have the privilege of the additional support" and that he would, in essence, when in the job market after college, be "taking away someone's chance at a job who didn't have the "pass" he did while in college."

I really didnt know how to respond to her - I see her point. I also know how important it is to ensure that everyone, regardless of ability, has the same access to education and what a difference it will make in his future. I am still torn with how I feel about it.

I am happy to say that we have been able to formulate a plan for him - he has part time employment over the summer with a company who works with "not quite ready for the workforce folks" as a landscaping helper. It pays minimum wage and they will provide transportation to and from job sites. We think that it will give him an introduction to working without some of the pressures if he took a job with a company who didnt understand that he will have challenges.

In October, he will attend a nine week life skills class on the campus of a rehabilitation center about 5 hours from us. After he completes that program, he will begin the culinary arts program they offer and it gives him the same certificate that attending the local community college would offer. Both programs are federally and state funded and while we don't qualify for the subsidy program, even the monthly amount to include room, board and materials is really, really affordable.

At this point, I think I am really ok with the "passes", however mythical or not. I mean, really, we are talking about showing additional compassion, understanding and patience for those who need it and, well, I just can't imagine not.

[QUOTE=christie0918;332624]Belle - I think both you and Andrew bring up really good points about "normal" and the unspoken expectations/standards/rules. Its always been these things that were Bratboy's biggest obstacles. I may have mentioned this before, but he had to learn to read body language, facial expressions and to listen for tone when interacting. He was often a very literal child and I know he has had the same difficulty in online forums.

I think that sarcasm in an online forum is difficult for anyone to "read" unless they know the person making the post and can "hear" how they might say the same thing if in real-time. For me, if I am uncertain as to the intent of the typed words, unless its something that directly impacts me, I tend to move past it.

I had a conversation with a very good friend of mine not too long ago about how difficult its been to formulate an after-graduation plan for Bratboy. I had been told of a small college not too far from our town that has an outreach program for spectrum folks. I was really excited about the possibility of him being able to attend a four-year college with additional support on campus.

I was in no way prepared for the ensuing diatribe of how she didnt think it was fair that he could obtain a four year degree with what amounts to an IEP the same as another student who "doesn't have the privilege of the additional support" and that he would, in essence, when in the job market after college, be "taking away someone's chance at a job who didn't have the "pass" he did while in college."

I really didnt know how to respond to her - I see her point. I also know how important it is to ensure that everyone, regardless of ability, has the same access to education and what a difference it will make in his future. I am still torn with how I feel about it.

I am happy to say that we have been able to formulate a plan for him - he has part time employment over the summer with a company who works with "not quite ready for the workforce folks" as a landscaping helper. It pays minimum wage and they will provide transportation to and from job sites. We think that it will give him an introduction to working without some of the pressures if he took a job with a company who didnt understand that he will have challenges.

In October, he will attend a nine week life skills class on the campus of a rehabilitation center about 5 hours from us. After he completes that program, he will begin the culinary arts program they offer and it gives him the same certificate that attending the local community college would offer. Both programs are federally and state funded and while we don't qualify for the subsidy program, even the monthly amount to include room, board and materials is really, really affordable.

At this point, I think I am really ok with the "passes", however mythical or not. I mean, really, we are talking about showing additional compassion, understanding and patience for those who need it and, well, I just can't imagine not.

christie, culinary arts, right on! a tremendous amout of work goes into planning a future for your son, especially at the distance from home. he will have so many transitions ahead of him, and that's no cake walk!

your post makes sense to me in that i wonder if people who are not on the spectrum realise how insulting it can be to hear certain things- i.e., accusations of being sarcastic, or being well-aware of something done to incite others - getting passes for the sake of using DX as a crutch, having more opportunities than NTs - when the opposite is more likely to be true. this can be so annoying! as a kid, several of those phrases were not unfamiliar to me from distant relatives, btw. online, matter-of-fact, and very infrequent personalisation is my posting style- but how it gets read/translated who knows; and really, i would love to be asked if someone was unsure of how i meant something i composed. isn't it inconceivable for there to be an expectation of any person [nt or NoT] to read minds and know just exactly what/when/how anyone else is going to be 'triggered' by their own stuff when you're trying to not engage negatively- because it isn't on the mind to do so! going on to the next step without additonal stress of it being about the other person - is that asking for a pass/ too much ?

i wish you all the best, christine. he seems like a remarkable young man with beautifully supportive parents!

belle

for me, having access does not mean getting a "pass."

i resent being forced/expected to overcompensate and act as normal as possible. i don't think that's a healthy way to be in the world. it's caused me a lot of pain and suffering and trauma, and usually it's futile. but i do respect that it is my responsibility to communicate my access needs and that as the person with the disability, educating others about disability, accessibility, and inclusion usually falls to me.

i also understand that having a disability doesn't give me a pass to be a jerk. but often i have access needs that other people take as something offensive (for example, needing to sit on the floor because chairs are agonizing, or using a computer during a meeting so that i can stay on track when i'm dealing with ridiculous amounts of pain and fatigue - in the "normal" world these things are viewed as annoyances, disruptions, impolite). so i do my best to make people understand that just because what i'm doing doesn't look "normal" for whatever setting does not mean i am being rude.

It is amazing to me sometimes how hard some people will work at getting the labels, to soak up the resources, to get what they think is a free pass at life.

It makes me mad and weary, for I am also the advocate that fights for people when they do need resources and just can't get them.

I'm not saying I judge who is disabled and who is not. I am saying that we health care providers see a lot more than some patients give us credit for. Especially in small towns.

This is my new video about accessibility on NYC public transportation.

Are other cities as bad as NYC, in regard to wheelchair accessibility?

i've never lived in a big city, but i would say both charlottesville and lawrence (smallish - 80k-120k folks) are awful, and both get away with it in the name of being "historic." i love living in places with a strong sense of history, but the cobblestone streets, uneven and poorly maintained sidewalks, and lack of accessible housing and public spaces are upsetting. most businesses are not physically accessible because they are in "historic" areas and don't have to comply with ada, most housing was built before the ada and there are few ground-level apartments, etc. people have chosen not to find ways to incorporate elevators, lifts, and ramps into businesses and houses, even when that might be an option.

If you can say that a person with a disability does not deserve, has not earned, whatever terminology you want to use, a free pass to those rights others enjoy, then I think that is blind-sided and selfish, period. If you know anyone with a disability who has had to struggle with the basics of life, seen for you own eyes the doors slammed, the accesses denied, the lack of quality healthcare in some cases (I've seen this), and the difficulties encountered when trying to have a basic sense of life, then you know that pass is there for a reason, and while some will take advantage of it, just like some people will take advantage of any situation for personal gain, what is the solution other than a pass?

I think it comes down to what society you want to live in, be a part of, and embrace. Do you want to be a society that lives by a dog-eat-dog mentality, I had to do it on my own, so why shouldn't everybody else mindset, or do you want to be a part of culture that believes we are here to help one another? That may sound archaic to some, but it's really not. We all had help to get where we are, all of us. The reason ADA was put in place is because it's necessary, and without it, businesses, retail stores, neighborhoods, public transportation, would have gone serving the enabled majority. Many still do. For a disabled person, asking them to assimilate into the majority is wrong, as much as it is wrong to ask a butch dyke to assimilate into mainstream straight culture. It's not like learning a new language.

What I find most offensive is how the LGBTQ community screams for equality, but many times it doesn't really want equality for all. And that makes me sick.

I can't fathom why anyone would think a pass is an actual pass at all. It levels the playing field at best, and usually gives people just enough to get by.

And this is for dix :readfineprint:, give me enough time, and I'll provide as many statistics, links, information, case studies, court cases and whatever else is needed to support this. It's worth it to me if it means it brings facts to the table that reveal a hidden or unseen truth.

Sorry for the rant, but I'm very passionate about some things.

I want to apologize for my rant. Although I still hold those thoughts as true, I just reacted emotionally to a debate I see that I just can't understand sometimes. Perhaps there are things I do not know, understand, or perceptions I have that block me. Sometimes, the answers are simple.

Dix, I hope you know I was teasing you. I would hope you do. You are a good debator and I wanted to have fun with that. :hangloose:

A few thoughts:
Good rant!
I wish more people would get mad about injustice.
What the heck is "the LGBTQ community"? - (that's a theoretical question)
And I've made a commitment to only attend/go to events that are wheelchair accessible. That's just a small step- pun intended.

As a builder, I wish there was 'political will' around shelter justice the way there is around food justice. So sadly ironic when I pass all these "localvore" restaurants and stores that aren't accessible.

Ha! Thanks. I'm not sure if it was good, but better to be irate about injustice than indifferent. I figure if we all have our share of things we fight for, in the end, those injustices will be reversed - maybe not in our own lifetime, but eventually. Mostly, I think you have to try to live by example, and that is the hardest thing, for me it is.

I'm not sure if you mean theoretical and rhetorical, or just theoretical. We're a diverse group for sure, the LGBTQ community. I am by no means able to define it adequately. But, it just seems if you are going to fight for equality, as a person of a counter-culture, or a person of any difference than the norm, then you want equality for all. I have struggled with my own hypocracy in this area and still do at times. I grew up listening to the socio-political diatribes at the dinner table of my parents, etc. of the whys and hows of society and how things are, how they got to be the way they are. It taught me to want more, more from myself, more from others, more from society, and more from the world. Sometimes, you want in vain. But, sometimes not.

I can't understand the problem with ADA compliance either. I mean, I do, on some level. But, as you say, it's really disheartening at times to see when people who should make a difference choose not to. I like to think that people do try to, in their own ways, where and when they can. But, then you see basic things like grocery stores that are inaccessible and wonder what the solution is. America likes to boast of fighting for freedom, but at the end of the day, it seems a selective freedom. I would like to think we are evolving, but history makes me think we really aren't. It seems more of a horizontal switch.

That's a great commitment on your part@only going to accessible events. It's a small step, but a step nonetheless. I like to use buying power to make my small difference in the world too. I don't always do this, but I try to support local and families/individuals where possible.

Thanks for the response, and nice to meet you :)