Thursday, January 15, 2009

Hate, fear, exclusion and pain.

Good news, Dr. Dawn! Dawn has passed her dissertation and now is officially Dr. I used to tell people, “I’m Dr. McClung, but the not the kind of Doctor who is of any use.” Well, after the tender care of about 30 medical Doctors, I figure I probably aided more lives, saved more lives as Dr. McClung than the medical doctors I seem to run into. So raise a cheer to Dr. Dawn, the kind of Doctor who makes a difference! Please drop by her blog to give her a note of Congrats.

Cheryl several days ago, really laid herself bare emotionally, which I know is a very difficult thing for her, and talks openly about my help, her watching and dealing with my health in a post (click to read) on Girl’s Gotta Fly. I would like to say that my condition has improved but after a particularly horrid day, and night which ended around 6:00 a.m. I am back to where I was health wise when Cheryl wrote that post; my last recorded blood pressure has a difference of 15 between the systolic and diastolic. While sleeping before this, I also had either a seizure or massive TIA (a SUPER-TIA: all the fun of the TIA, but more!) which paralyzed my right side and made it impossible for Linda to understand me. That has improved. Last night, among the carnage, I did do a small post on the Postcard Project that can be found here.

I want to talk a little bit about Hate and Hate Crimes. Beyond my physical issues, in the 48 hours I have been ripped, stripped and left emotionally wounded by not one but a few encounters. I hope they can illustrate the type of pain that Hate brings.

Yesterday, about a boxing video I put up on Youtube six months ago, I was notified of a message. The message was: “Grow some legs, dumbass!”
That single video has other comments including “Why not pop her wheels and then go around and bash her in the head with a stick!”, “they should spin her chair around and start waylaying the back of her head.” and “Boxing can’t be done without feet, people who try are stupid!” Do these people know me? No. But the same sorts of comments are said for my Badminton videos, for cycling, for racing. That I should even try badminton, made a person let me know they were ‘laughing their ass off” at me. Which hurt worse, being told to ‘grow legs’ or being a ‘dumbass’ for trying. These are the voices from junior high and high school, of every male threatened by a female, of every person who is callous of those without natural coordination no matter how hard they try, it is never enough. They are voices of cruel gym teachers, of parents of other kids at school sports day. It was a door that opened a flood of pain. I put the video up there so other women in wheelchairs would consider boxing as an option.

Linda pointed out it was the person with active legs wanting to point out how superior they were to me. That I am a “dumbass” for, well, existing, or trying to be equal to able bodied people. To me, anything which puts one group as less than human than another is Hate, and indeed, many of these comments incite hate crimes. The idea is that a person who tries to be ‘like us’ deserves to be taught, with violence. Or in terms of the first comment, with callous reminders of why I am NOT an equal person. Because I can’t ‘grow some legs’ so I will always be a ‘dumbass.’ And the verbal comments hurt. And being told to ‘grow thick skin’ has never worked with me. But I have been told it enough to know some that I am failing there too, that to have pain when people want you to be in pain, is somehow a failure as well. So these comments rebound inside of me, letting those inner voices clamor for a while until that is all I hear. Yeah, I cry; you can beat me but words DO hurt.

People over the last two years have been angry to the point of swearing just because I use a wheelchair and that is inconvenient to them. I have actually been thrown out of a store in Victoria for….being in a wheelchair, “No space or place for you here!” Said the manager, as she stood above me, blocking me from turning aside as she pushed me with her presence out of the store. Standing guard lest I try to enter. The amount of times people have leaned over me, or blocked my chair, to try and force their anger at me has been often and frightening.

I have been laughed at in public, just for BEING; I am in a chair….I am a joke. I edit a video of me doing something I feel is an accomplishment; the response I get is “When do you hit something or go flying out of the chair?” That laughter and assumption that I am there for painful amusement hurts me in ways that make me feel ashamed and twisted inside. It further submerges me, pushing me down, down, making me believe I will never again be part of or accepted in a society that understands or even wants to understand my joys or accomplishments. I am of course expected to understand and applaud theirs. That, like the telethons, fundraisers and in other social and personal way, I should be ashamed for NOT being like them. That I need to accept my shame for not being one of those who WILL jog until they are 70 or 80. But look at me, I even need to rely on others. I think of the scores, perhaps hundreds of people I have met that wanted to know what I DID or didn’t do in order for this to happen to myself. They don’t ask my name, they ask, “What could you have done to prevent this?” This isn’t just men, it is men and women alike. Nothing like wheeling down a road while a drunk woman shouts from across the street, “Look at THAT! Haha, look at THAT!”

Ironically I have found the acts of passive hate against people with disabilities to be far more open and extensive than those I experienced against sexual orientation (I had some pretty extensive experience in that). And while hate crimes against LGBT are recorded, hate crimes against those with disabilities are often not. How many times has an able bodied person sworn at you, blocked your way, or used your disability to terrorize you? It happens often, even care givers who I have pissed off have leaned over until their head is over mine, while their eyes turn into slits of anger: intimation and hate. Plus, in the last year, I’ve had at LEAST four or five people who KNOW my conditions, and yet, deliberatly put me into physical pain or discomfort because “I made them angry.” If you want to include the doctors, specialist and technicians the number goes into dozens of people who KNOW but simply don’t give a damn about you as a human being. Your pain for an hour is not equal to their coffee break, your ability to breath not equal to 60 seconds of their time. And every one of these encounters are with people who had degrees in social work, medicine or training in working with people with disabilities. I asked my doctor after I had passed out and had a seizure why he never makes the LEAST accommodation? He got angry at me, and delayed my ability to go to a pain specialist.

As for the rest of the population I think of the film The Station Agent where a man who is a little person with a growth condition is daily mocked and taunted, if not physically moved against his will: because people can. And that is how it goes. For every person who opens a door, another mask drops off and you realize they are TOLERATING you when someone is late or wants your parking spot or doesn’t want to move or wait while walking. And while Nature and God might love diversity, humans don’t seem to.

Now, I am sure we are talking about ‘bad eggs’ or people who are not yet educated. Yet if that is only 1% of the people I encounter in a given time, it can make for a pretty wretched time.
In the online disability world, I have tried both to speak only for myself but also I have tried to be sensitive to acknowledging my ignorance of many different disabilities and conditions and asked for guidance and education. I have had problems, discrimination, attacks, yes recently from individuals who seem to want to defend the ‘disability community’ against me, or educate me on how I am not really part of the community. This hurts too. I have over time, many times been the person who everyone else in the group turns their back on, LITERALLY. And it never gets any easier. Nor does sharing yourself and getting attacked.
I have most often been accused of not ‘getting it’, then of simply lying (I guess you can read Cheryl’s link and decide if she is a liar too) or using my condition to get attention. I am a writer yes, but this is not fiction. I have been told that I am not a nice person and that by how I act, how this blog acts, I am hurting every person with disabilities. Which is odd because that sounds a lot like those telethons, or crip camps where people are supposed to act a certain way, and I have strayed off that path.

Yes, I talk about things that are unpleasant. Rape, incest, sexual abuse, physical abuse, care giver abuse, abuses within the system. The number one statistical group for sexual abuse are females with disabilities. And yet, instead of the police or anyone having standard operating procedures, I am told to SHUT UP? No. I call the police and they say to shut up. No. If I EVER find another example of sexual or intimacy activities forced upon people in care, in respite, from care givers, from anyone, I will call the watch commander. I know we aren’t considered equal humans while the people who ‘take care of us’ are. But we are equal.

Yes, I will continue to talk about unpleasant things, like this topic for instance. We don’t want to admit that there are bigots and intolerant people with disabilities but that is the nature of disabilities; everyone is eligible, not just nice people. And the whole experience CAN make you want to deny ‘being a freak like you’, or “I’ll never accept I’m disabled.”

And for the same reasons I left the self harm forums, I have little patience for those who want to prove that they have the worst condition. The worst pain. Hey, I assume that EVERYONE pretty much has a condition I couldn’t take. I only take this one because it comes one minute at a time. I certainly couldn’t handle Lupus, MS, M.E./CFS, Fibro, EDS, a spinal injury, cancer, an amputation, and several times I have failed to handle depression to the point I tried to take the ‘quick exit’ plan. So why do I want to get into a contest, and what do you win for the most pain? The greatest impairment? And yet, there are people who are ready to defend that, who get upset by perceptions that others get attention. They are intolerant, they are bigots and for what point? I was hoping we could learn about each other, how to help each other.

Pain sucks. Anyone with pain has it bad whether it is the dislocation of someone with EDS, or people who have Migraines, or the pain of an amputated limb or the pain of cancer or part of your body infected, or dying, it ALL sucks. Sure, there are times I get frustrated. Particularly times when I am in extreme pain, and trying to control myself so I talk in normal tones instead of screaming at everyone and someone accuses me of ‘milking it’ or ‘Maybe if you didn’t focus on the pain all the TIME and tried smiling you’d be a nicer person.’ It is then that I sort of lose it, that I want to tell them that they just don’t KNOW. But just because they have made an assumption about me, why should I do the same injustice to them? Because I can’t know what they have been through and quite honestly, all of these people, sound like they need the caring of a postcard.

No, I am not going to sit by silently while sections or individuals are treated as less. I am going to be loud, I am going to be obnoxious and people are going to find me threatening because I am telling them, “You need to change” and that if VERY THREATENING. They might be disabled, they might also be discriminatory. It certainly isn’t new; much as in some areas butch lesbians look down on lipstick or femme lesbians, and gay men openly deride effeminate gay men and t-people (I am talking the range from conversations to articles in the Advocate), so people with disabilities also cluster and exclude. I believe that while a person cannot know exactly know what another’s condition feels like, they can respecting what they say about it, and learn. But at times, and more often when official organizations are set up, that doesn’t happen. Some with disabilities often reflect the attitudes of the able bodied world, or don’t make voices to dispute them, when we STILL have a classification in the paralympics (which I, Lene, and many people who read this blog would be rated in), called “The Others.” Or “Others”. I can’t see that going down well in the Olympics when they announce the Germans, the USA, the Australians and then everyone from Africa (the continent) are just announced as “And here come ‘the Others.’” In the paralympics and other disability sports it is so difficult to be rated if you ARE an ‘OTHER’ that after a year, I still haven’t managed, and I might need to fly to Montreal just to get rated to compete. Then, once rated if I am not re-rated at EVERY event, I can’t compete. Yup, thanks for showing up but we don’t have a place for those like YOU. Indeed the rules for many wheelchair sports tend to only include accommodation for the ‘poster people’, low spinal cord injuries.

Now, does it pain me that someone thinks I should ‘shut it’ or shut up because I don’t have the years or the experience or the understanding of disability issues? Or that I am just making things up for attention, or milking things for people to feel sorry for me? Yes. It hurts a great deal. I had a manager who was never sick and honestly didn’t believe the flu or colds existed. They never felt them so thus people who call in are ‘slackers’, they may have to live with them doing it legally but they don’t have to accept them. So when someone tells me that I am THAT person. Yeah, hurts. Because I don’t “get it” if I was not born with a particular condition or undergone the life of someone with this or that condition, and never will so what is the point of talking to me.

I have been turned away and openly excluded on several blogs, forums or web pages of different disabilities, often with a phrase like, “Well, I think she might mean well, but she should just sit there and listen because she will never really GET IT.” (that’s from the person defending me, other people are like, “Why is she even here, she isn’t one of US!” “I find her presence offensive.” – yeah, just breathing the same cyber air). So I am to accept being a second class, someplace where I should sit quietly in the corner on a disability site or page because I don’t live that life……..right? Except the thing is that I am the low end of the gene pool. All of the sites I talk about at the start of the paragraph where I was turned away from I DID have that condition.

But, since these were conditions I had hidden for years/decades, and others were emotionally invested in them and that overwhelming feeling of ‘OMG, this changes everything!”, I felt they might be threatened if I said I had it, because I didn’t WANT attention. I just wanted someplace where I could talk to people who understood what I talked about or at least talked about things that I understood but had NEVER been able to talk to anyone about. Yeah, I’ve been the denial gal. So now, after decades of ‘passing’ as able bodied (‘passing’ is a term that USA blacks who were light skinned used to use to talk about those who passed as white, to reap the benefits), I wanted to try and integrate all the parts of me, to accept and learn about the disabilities I had been hiding, accept it was part of me. But that didn’t happen. I am missing sections of DNA, in fact my school used to use me as an example in biology; people would come up at lunch time to stare at me and see that parts of me, unfinished or without pigmentation.

I am not trying to make excuses; I sold out who I was in order to have the privilege of being able bodied. So now, perhaps the taste of acid and ashes when I am told I ‘don’t understand and never will’ is just. But to be told, that “you don’t have a voice here” – you aren’t allowed to speak, aren’t allowed choices, because you are not like us, not like us HUMANS. That I understand. There is a lot of times I am pretty sure I am not human, but some…THING. I have heard from many people all the parts I am missing, some physical and some emotional and/or mental. Ironically my time on the MSA website before getting the boot was about 48 hours. I take painkillers and have multiple conditions and the people on the site were talking about about care giving their parents, and I was told I was doing MSA wrong, and that people with my attitude weren’t welcome. Yikes, where DO I get the manual?

Now, this isn’t a giant pity party (okay, a wee pity party) but what I hope are enough examples that we can look at the hate behind both: the able bodied and those disabled who discriminate, not ever knowing, meeting, caring, about the person they discriminate about. It is of course the fear that is tied so closely to hate. See, I am not er, shy. I am in your face, and when I can talk, I am intimidating, particularly if you are scared instead of entertained. If my pointing out that changes need to be made or that I am equal to you, standing there, in EVERY respect, makes you feel threatened, then that is fear. And yes, to people who do actively discriminate, I sometimes can come like the wind of the furies. Because I see that element of fear, or disgust, in those who threaten, hidden sometimes, sometimes not, behind the verbal venom or hate (and when you try to put a person or group of people as less than equal to you as a human being, whether you are disabled or not, THAT is hate). When a specialist forces me to try and hop on the toes of one foot, watching as I try to prop myself against the table, stay upright use the centrifugal force of my arms to launch myself horizontally as I tip over and smash myself into the wall. Watch with a smile on their face. That is fear sated.

Now why? This isn’t apathy of intolerance that we see in the majority but people who are active, either able bodied or disabled and run into people who don’t fit into their world view and are threatened. There are two truths I have noticed: the more uncomfortable someone is with dealing with something, the more they will try and control it. And the more people try to control things, the more angry they become, because control just isn’t possible. You can SAY that gays won’t see God, you can SAY that people of my level of disability are better off dead, but what if someone shows that God disagrees, or I disagree, and do so at length. Well, that means that either the person has to change or they have to get angry at the person pointing out that they don’t have control.

Back to boxing I would actually rather someone try to waste an arm by spinning my wheelchair around (who is going to know how to manipulate a wheelchair, the person using it 24/7 or the person boxing them?), to beat me in the back of the head. Because a) I will know finally know which faces hide hate and the type of person I am facing and b) I will learn to deal with that. And if my only way to deal with it is to accept my limitations and get guns….I mean MACE then I will go with that. It is true that I am an “uppity” crip; I think there SHOULD be quota hiring or more (because while while YOU are doing twice the effort surviving university, the person who is giving you rides to university is adding YOU to their resume as “two years experience in helping the disadvantaged and disabled in a variety of environments”).

Living in a country, province, city that has no disability act or enforces discrimination legislation, I face discrimination a lot. I do not have to make the person who is denying me a job, entrance to a restaurant, or failing at the job they are PAID to assist me in arranging care feel good. I will be vocal about the shortcomings because they directly effect me, and so if you don’t want me to ask you, “So if you don’t DO your job, why do you keep taking the paychecks?” then maybe you could try and DO your job, and then I’ll stop asking THAT question. If you don’t want me to tell people that your restaurant “hates cripples, and probably kittens!” Well, you could come out and yell at me to leave, or you could actually figure out how to make a ramp for about $30-40 (if you can haul a sign in an out to the sidewalk every day, what about a ramp?).

So I get hurt, I cry, I go into a bit of shock. It is never pleasant to know that people hate you, people who never met you, people advocating violence against you. And then I go and do some postcards and write a blog.

It hurts, it stuns me for a while but I go on. Because I have ONE life, and if I spend my remaining time making sure everyone likes me, the person who will hate me the most is ME. There are things that need to be done, and right now I am trying to change who I am and how I deal with things (slowly now, and calmly, and sitting VERY still) one more time so that I can be around here to do them. I have found that if you open yourself up to caring, and if you take chances with caring, if you try to do things and show people that there ARE other ways, then yes, you will be hurt. People will often try to stop you. They will discriminate against you. And when you finish, no one will cheer because only you will know the meaning of what you have done. We have one life, I will not spend it on hating others, I will spending it on tending to the broken hearted, in breaking the chains in the minds of those around me. Who knows what is possible until we try? Who knows! This is the duty I picked up, I chose to carry.

Dawn is teaching, and is now Dr. Dawn, because she picked that up dream, and drove 1000 miles. Through those years and assistants and she kept going, through the depression, the pain, the good days, the bad, the storms which killed her research, and yet, she succeeded. Because she tried.

23 comments:

Neil said...

Congratulations, Dr. Allenbach!!

Beth, I think you're nice. No, better than nice: you're incredible.

But some people think that anyone who doesn't think like them, or see them as the best, or the leader, isn't worthy of inclusion, or consideration.

One day, dear, you will be equal to the bullies; or more accurately, they WILL become disabled. Then you could say I told you so, or you could do what Beth would do, and treat them with the compassion and understanding they didn't have for you. And that's why you're incredible: you love (or are willing to try to love) almost everyone.

Twenty percent of the population isn't going to like you, isn't going to approve of your postcard project. You can't reach them, and it isn't worth wasting spoons trying to reach them. It seems you've realized that; good. Go thou forth and please thyself, dear, and do what you do best. Live for yourself - which in your case I THINK means you live for your friends. Sort of?

With great respect, love and hugs,
Neil

yanub said...

Beth, this post encapsulates so much of what I love about you. You are a striver, someone who pushes herself to excellence, but you are not competitive. And you do what needs to be done even in the face of terrible injustice and rejection. I am always in awe. Because you are strong (oh, don't deny it. You are strong like water), I am more willing to be strong. Damn, I will miss you when you are gone. Thank you for hanging in there.

I have to go make myself try to sleep now, because I have to get up ridiculously early. But your post (and also what Lisa Moon wrote on hers) addresses some things I've been thinking about this week, so I'll try to actually update my own blog this weekend.

Raccoon said...

I think, personally, that this is one of your best posts.

And a news story from England tells about people taunting a 17-year-old boy into jumping/suicide.

You've given me things to think about, here.

rachelcreative said...

Great post Beth and well illustrated as always.

"if I spend my remaining time making sure everyone likes me, the person who will hate me the most is ME"

This is something I had to learn myself, and still have to refresh in my mind from time to time.

I also have to remember to listen to the voices of those I trust and respect, letting go of what those others people say.

Because if someone says "Boy you are ugly and need to get a life" (don't you just love youtube) and I listen to that and take it into my heart and hear it louder than the people I love and respect who say differently ... well I do them a disservice by believing the bitter, foolish, selfish stranger more than the people who matter to me.

Like you say disability isn't some club where you have to attain certain standards. Disabled people are just people. There's as much good and bad there as anywhere else.

Life really is too short and too precious to waste on hating back or allowing those we don't respect to hurt us. It's difficult not to let it get to you when everything is bloody hard anyway!

CJF said...

I think the other commenters have already said what i wanted to say so I'll just add a big

HUG

for you.

C

kathz said...

First of all, congratulations to Dr Dawn.

I think you're right in telling of your experiences. People don't experience things in the same way or have the same reactions to similar events, medical conditions, etc. The important thing is to see people as they are - as human beings - and respond to them. And that means taking time, sometimes from a crowded life, to try to understand that other people have different perspectives, priorities and needs. That's what you're so good at doing - evidently some other people are so wrapped up in their own view of the world that they can't begin to see that other people experience and respond to the world differently. (I hope I've put that clearly). Your blog and your concern for others are of great value in the world.

Veralidaine said...

I also think this is one of your best posts.

I think the most remarkable thing-- well, one of them, anyway-- about you is that you don't just accept not fitting into an existing community and either change to fit in or leave. You make your own community, and damn all the nay-sayers.

I'm hardly part of the disability community either, as the token AB, but knowing people with disabilities and participating in the online disability blogosphere has taught me how to deal with my own conditions a little better, from anxiety to the stuff I've only told you about. It's pretty stupid to tell someone they don't fit in because they're not "doing disability right," when somebody like me with no disability at all is fairly well-accepted.

And the people leaving rude comments about your boxing? Just afraid of your left hook, I'd wager.

Lene Andersen said...

Crap. Now you're making me think again. I was trying to take a break from that. ;)

You and I have talked before about the weird need people have to collect in groups of same, excluding others which seems to make them feel stronger as a group. I don't get it. We have also talked about how you don't conform to the way cripples are supposed to behave - you expect things, instead of asking nicely with 30 extra pleases and 15 too many thank yous. I have learned much from you about how by asking too nicely, I submit to the stereotype. I hope to one day shed enough of my conditioning to qualify as uppity, too.

I don't know why people hate. I don't get it. Why is it so important to be better than someone else? Why do people feel free to say such things to others? Where were their parents? And why on earth do business owners not get that by blocking access, they are missing out on revenue?

cheryl g said...

Congratulations Dr. Dawn Allenbach, isn’t it great when hard work and determination pay off!

This is an excellent post. There are so many important things brought up here. We are probably all familiar with being the focus of hateful words and actions for one reason or another such as our sexuality, our physical appearance, our disability, our skin color – the list sometimes seems endless. There are too many groups that are on the fringes and lack societal acceptance. There are too many people made to feel sub-human just for being.

I have never understood how any group that is itself marginalized can perpetuate that behavior and yet it happens. There is further exclusion within groups that are excluded. In my area the lesbians don’t really accept transgender or bisexual individuals. These groups are not made welcome at events. I am not popular because I always ask how anyone who has felt hate and bigotry can willingly inflict the same type of hate on others.

I also don’t understand why some in the disabled community try to create class systems based on severity of disability or pain levels. Why does it matter if you think your pain is worse than mine? It’s not a contest. Pain is pain and one person’s pain is no greater or lesser than another person’s. It is like you say in the blog, “It all hurts and it all sucks.” The only fact that matters is that the person is in pain. Everyone has burdens and challenges and it is good to remember that.

You are right. We should learn from each other, about each other and learn how to help each other.

On a side note I really like the picture of the girl floating among the water lilies. The girl with the sword = HOT!

wendryn said...

Congratulations, Dr. Dawn!

Mean people suck, and sometimes the mean ones are unexpected. I'm sorry you had to deal with them.

I hope you get some sleep this weekend, or at least some rest. We'll be thinking about you.

*hugs*

Abi said...

Thank you for writing that - it really is food for thought. I want to write something about it, but my brain is too tired to think thoughts it didn't initiate - it won't step outside its comfort zone at the moment, which is annoying me.

Cheryl wrote: "I have never understood how any group that is itself marginalized can perpetuate that behavior".

I think that people within the group perpetuate that behaviour because that is where the power is. People within a certain group are just people, and many people want power. When they see someone who doesn't fit, they see this as an opportunity to behave towards the person as they were behaved towards by society, thus "lifting themselves", in a way. I suppose it's more like getting higher up the pile by shoving more people underneath yourself. It's just how many people work. I think that it can be trained out, but it helps if it is the individual bettering themselves because they realise that they are doing it all wrong.

I am sorry that you came up against these people, Elizabeth. They really should know better. I am also sorry that people took it upon themselves to be hurtful about your wheelchair boxing. I think that they are not getting the point.

Sending healing hugs (and did you get the energy I sent to you in yoga on Thursday? I didn't know which direction Victoria was in, so it may have veered off course. ;-)

Elizabeth McClung said...

Congrats again Dr. Allenbach.

I am so overlate, Linda is going to kill me, or she will unplug my oxygen which is the same thing (haha!).

Neil: Well, I don't know if I am nice, and I don't know if I am equal or not, I only know that those around me are, and when people say things to me, then they say things to others too. Other people matter.

Ironically, it is the 20% that I need to reach, because they matter too.

Yanub: I'm not competitive? Great, can I give you a list of people to tell that too, since they don't seem to believe me!

Strong like water - well I guess there IS more than one way to be strong, thank you for that.

Raccoon: there is a internet wall of children bullied into suicides, it is horrific, 11 year olds throwing cables over power lines and stepping in front of buses. In Cardiff a girl with cancer had enough hair grow back to return to school. On her first day back, the other children set her head of fire.

They don't shoot each other there but it doesn't seem to stop them being nasty, sadly.

RachelCreative: Well, I could afford hating myself until recently because the amount of energy I can generate to hate myself is enough to do terminal or permanant damage. So I try to avoid that when I AM rational. Still hurts though.

That's true, if I look at it as disrespecting and hurting Linda by not respecting her opinion to hold this random person as higher then hers, then I can accept it. But geez, those voices sure stay with me anyway.

CJF: thanks, I guess I thought this would bring more people down on me going, "What! disabled people being mean, you evil person you!" - but I guess we have all run into a person going through what I consider a bit of a growth cycle (the denial phase can be quite hard for the person and those they meet).

Kathz: Thanks, Linda says my ability to emphathize with a person to the point of understanding what they will do next or why they act is my gift. I don't know, I think humans are so complex it is an ever facinating subject and that only in something like fencing, where you limit the thinking can you truely get that sort of connection. I wish I could though. Every human experience.

The requirement for a Ph.D. (I looked it up when I first started) is to find ORIGINAL information and present it - to essentially volunteer to devote yourself to something that has not yet been explored and then write it up so it can be understood by others.

It seems that if our society learned to value the experience of being literally differently abled or the difficulties and experiences of a disability in this world, there would be a lot of Ph.D.'s being award for the blogs and Carnivals that have been done - narrating as some have, right until the very end. A picture of disease on an individual; beyond the diagnostic textbook. Original research. But we don't value the experience as much as a little pill that works on 27% of people to improve thier pain while only 25% of people had pain improvement on a placebo (I wish I was jesting - I'm not, read some medical tests that pass FDA or other standards).

Veralidaine: Well, I am going to continue, so I can't be untrue to myself, so I guess that means I do have to continue on with those who are interested, however few that may get. I think this is why I appreciate all the people who read, who comment, who ask for postcards, who send a card, everyone who is part of what existance I now have.

I don't know anyone who is perfectly adjusted, but some are better at running than others. We all have our 'black bag of baggage' we haul around behind us (oh if we could only let go or put it down!).

My development today. I said "No" to a care giver. And I told them to leave. That's a big step for me. I would rather have her like me a little less than drain my energy for the day.

See Lene, now I have to go and think, because that part of me is gone, so to bed I go. A good day and open sidewalks to you.

Tom P. said...

There are always people who need to feel superior to other people. They are more pitiable than anything else.

Laura said...

Beth,

About the blog. The tenants of ignorace hath no bounds. There for the grace of God go I.

There are times that I think the solution to this problem should be a manditory spinal block and allow them to sit and live in a chair for at least a couple of days. It is their ignorance that allows them to be so hateful. Yet when the tables are turned they are the first ones to cry out to have mercy on them. Then if they are asked why should they get mercy their reply would be "But I didn't know what it was like". It is their ego that prevents them from looking at life from a different prespective. As for the medical personel well that is an ego trip also. Some doctors became doctors because they dream of the big save that they think that they will make or the number of cures that they can make. Their idea of medicine is in how many people they can cure of their malady. When faced with something they know little about many times that ego won't allow them to admit that they don't know and allow them to learn about it. I know about this my Father is one of those people that can't admit he is wrong or that he doesn't know about certain things. You can't win an argument with him even though you may have tons of evidence supporting your argument. Once it is set in his brain that things are a certain way, that is the way it is going to be. He is seventy five now and now can be persuaded on a few subjects. His own life expieriences have forced him to see some of his own practices in a different light.

Some of these nay sayers are lost forever and cannot be rehabilitated. Some others are slow to be educated. A few will "get it" only when confronted with their own disability. They are the ones who are pitiful and really handicaped by their own minds.

Dear Beth I wouldn't worry so much about these negitive people. They are getting what they want by getting a rise out of you. If you don't say anything about their negitivity thet will lose interest and go away. Or you can give them to us your followers and friends and let us deal with them. They wouldn't like that one bit because I know how we defend you.

It was a good post though. Again you have found just the right images to go with the blog.

Devi said...

Regarding the haters: How small and pathetic their lives must be, and how little must they have going for them (or not be able to see it?), if they need to use the fact that they're able-bodied (for now) and you are not to make themselves feel superior!

Devi said...

Also, congrats, Dr. Allenbach! :)

Neil said...

Linda won't kill you, Beth. She loves you too much.

But at least some of the 20% of us that you still want to reach don't want to be reached, and will cost you more spoons than you can afford. That's the point where looking after yourself becomes more important than saving the world, or reaching people.

You might make an attempt to reach everyone, and if the 20% are hiding, you could take ONE try at reaching them too. But I'm afraid you just can't reach everyone, no matter how hard you try, and you're just going to have to cut your losses at some point.

I realize you may not want to hear this advice, though, so please understand that I'm smiling and hugging you gently while I try to make my point. Then I shall smilingly realize the utter futility of it all and admit you're right, 'cause you're too darn stubborn to do it my way anyway. Right?

Sending positive energy for lts of peaceful sleep and lots of cuddles with Linda tonight. And zen hugs too.
Neil

Linda? Give her a hug for me, please? Thanks!

FridaWrites said...

It is so difficult for me to accept how full of hate people are for those with disabilities--as the commenters on the youtube videos are. You are beautiful and what you do is beautiful. It does reinforce my sense that we're not safe out in the world--it is important to be aware.

You got kicked off the MSA website!?! Grrr. Did they not like that you directly addressed issues? I've sensed on one health message board that people haven't liked me referring to our disability as a disability, but heck, those of us unable to work or get around or do things that other people do are disabled--esp. those drawing disability checks.

I've missed you and will be back reading. I'm doing fine and the surgeon thinks the biopsy will be fine--the liver looks healthy.

thea said...

I hate hate crimes. I hate when people pick on others to make themselves feel superior. I hate when people make pointless remarks like some of the things that were said to you with the videos...

But remember when people see those, some of the people who *need* to see those, there is also positivity going out there 'she can do this, so maybe I can do these things too'. Like being any kind of role model or leader who does something positive, there is practically always some pitiful creature, hopefully like you say just a bad egg or uneducated, who will be rudely inappropriately about things that they see that make them uncomfortable.

thea said...

Well done Dr Dawn :) This is cool.

Drake said...

Bethy Beth Beth! Hehe...sorry. It's just been so long since I've been able to come online. Partly due to the fact that telephone lines conduct lightning and has a tendency to fry what ever is on the other end (my modem) and partly due to the new job (Trying to keep my nose clean ;)

I hear what you are saying...and I understand. No matter how much one tells your self that they put you down so they can feel good or that they won't know untill they are in the same situation as you, it still hurts... it hurts a lot.

I am also entitled to park in the "handicap" spot at shopping centres due to the fact that I can't walk that far...but the looks you get...sheesh.

All I can really say, is that I pitty those who have so much hatred in them... Life is dismal when you are like that. You know the true meaning of life and for that, you should be greatfull! I AM gratefull that you know the true meaning of life. Especially due to the GREAT postcards I get from you ;) Thank you sooo much! I received another one yesterday :D.

As for me...ummm...yea. Things are a bit weird at the moment. For the past four weeks, I have been doing nothing else other than sleep. Yep, I know my dear...I work too hard, but this is different... I get home, I eat and all I have energy for is sleep. I literally sleep 11 hours during the week and during the weekends, I only get up at 12, just to go to sleep again from 2 till 4 and then back to sleep at 8...it's a bit disconcerting but what the heck do you tell a doctor? Ummm...all I want to do is sleep? Blegh...

We helped my Grandma with her blood pressure cuff the other day...as she has no clue how to use it... My BP was 60/100...which, according to the insert is borderline ... what do you call it again? "BAD" low blood pressure? So I wonder if that's the reason... not that they can do anything about it.

At any rate, HI THERE ! And I hope you didn't miss me too much/were concern about me...

I am REALLY glad to hear about the fact that you are not cutting any more.

HUGE HUGS!!

P.S. That's brilliant news about Dawn!! Will have to stop by and congratulate her some time!

Elizabeth McClung said...

Drake: I am really glad to hear from you, I was really starting to worry. I am glad things are going well. I am so glad the postcard got to you. And I guess I am baffled by the hate which is why it confuses me so much and hurts so badly, I don't know what I did to deserve it, but it isn't about deserving it, is it?

Oh I am very concerned about you - I think if you see a doctors and ask for an NRI, or an SNRI, they help with giving a bit of energy without mood alteration. I hope that helps? And I hope that you are okay and if you need to talk, email me?

Dawn Allenbach said...

Thank you everyone BUT I am not a doctor yet. I have passed the proposal phase, which means I presented my research to date and had it (mostly) approved by my committee.

I'll comment more thoroughly on the post tomorrow.