(I wrote this today because I was thinking of my buddy, Nancy, one of those people I humbly try to speak on behalf of, and who shares a Birthday with me today. Happy Birthday!)
Sometimes people's eyes glaze over when I talk about disability issues like forced institutionalization or end-of-life politics or the Ashley Treatment or the Homebound rule. They don't see why I should go off on something that doesn't directly affect me. I am not institutionalized, I am not facing forced sterilization, and am not imprisoned due to the homebound rule. Yeah, I don't see and hear so well, but I'm "normal" otherwise. I'm not like them. Those disabled people that are vent-dependent or drooling or seizing with spasms in a ill-fitted wheelchair or not able to speak or think above a 3 year-old level. I'm not like those people.
I thought this, too, when I was younger. When I was 18 and coming out of NFB-slanted blind rehab, it was all about passing for normal. It was all about being physically disabled and making it cool. My friend, Susan and I would make sure we dressed impeccably with hair and make-up that was flawless. No one was going to tell us that we couldn't match our clothes or put on eyeliner. We knew we attracted a lot of attention, so we had to conform in all other ways to as normal as possible. Besides that white cane, in every other way we would be just like everyone else. We would pass. We were going to be the "cool" blind people. This forced us into a necessary segregation from other "more disabled" people. Sure, we could hang out with a cool and hip para...but stay as far away as possible from the mentally retarded. Especially the mentally retarded who were also blind. Lest we get confused with them.
When I decided to double major in elementary and special ed in college, I thought I could only choose to teach the physically disabled kids. The deaf kids or blind kids or maybe kids with learning disabilities. The reality is that there is no such thing as being able to limit yourself to any certain population as a teacher. Teach blind kids and several of them will have other disabilities as well, including cognitive disabilities. But as a young, stupid college freshman, I had no interest in teaching kids with significant cognitive disabilities.
But I needed money, and part-time jobs for high school educated blind people are hard to come by. I had a job lead to work with a six year old with significant cognitive disabilities who was on oxygen and used a g-button type feeding tube. I specifically remember calling Susan and saying, "I'm not comfortable with this. This isn't the population of kids I want to work with."
But while I was considering the job, we had a guest speaker in one of my special ed classes. Her name was Mary. She sat tiny in a huge power chair filled with machinery. She had a vent and was hypertonic with spasticity from Cerebral Palsy. Her speech was slurred and she was also visually impaired. She had some level of cognitive disability. She came with her adult foster family, a dentist and his wife that she lived with and who gave her support. She also had a team of nurses that rotated giving the foster family respite. It took me several minutes to acclimate myself to her speech patterns. But when I did, I enjoyed her very much. She was funny. She talked in simple sentences and some of the student's questions had to be translated into simpler language. Certain vocabulary had to be explained. But she told jokes, talked about her hobbies, going to bars, what TV star she had a crush on, what she did when she hung out with friends. And as she talked, I started noticing that this person who had seemed indefinably ageless when she arrived was my age. She was a young adult who was doing young adult things. She was from my generation and she knew the lingo and references of the kids of my age group. She became a person who had a whole lot in common with us. She became cool and hip.
I decided to take the job that week. And I met Tom, my little six year old kid on oxygen. After a couple of weeks with Tom, I realized that I was missing him on the weekends. I wanted to know how he was doing in school. I looked forward to seeing him each day. I began to love his little quirks. He would take my talking calculator and make it speak aloud the numbers 99 to 0 in reverse over and over again. He would take his little magnetic letters and put them in order of the QWERTY keyboard. He had to eat the same thing for lunch every day in the same order. He would run over to me when certain songs came on and we would have to sing and dance exactly the same way every day. I fell in love with this kid. In the summer I would take him on errands with me and we would go places together. And, this kid that I and his parents and his teachers and everyone who knew him loved so much would elicit stares and pity and even disdain from the outside. And we were having a great time. It made no sense to me. People would even say to me, right in front of him, that kids like him shouldn't be born and that parents are cruel to let a kid like that live. Why don't they just take him off oxygen and let him die? And I would say, because he is great and we love him so much and he is having so much fun you fucking hateful bastard.
And soon after that, as I've told this story before, I volunteered to provide childcare at the ARC meetings. The ARC is an advocacy group for people with cognitive disabilities. And that led to me doing respite care and babysitting for lots and lots of kids with cognitive disabilities. Many times their cognitive issues were coupled with many other significant disabilities. I babysat kids with microcephaly and kids who barely responded to any stimuli. I worked with kids who were deaf and blind and had CP. I worked with kids with psychological and emotional diseases as well. And I get to know their families and I get to know them. And you begin to see how each one has his or her own place in the world. You start having kids that you are fonder of and kids that get on your nerves. And you notice that this does not so much have to do with how disabled they are. It is not, like everyone assumes, that the less disabled ones are more likable than the more disabled ones. It has to do with who they are. Because they are people with their own personalities and likes and dislikes. It does take extra time to get to know them and learn to communicate with them. But once you do, you start to figure out that one kid doesn't like something when his eyes turn to the left. Another kid smiles when he is mad. Another kid only knows how to say one word, but you start to understand that one word means 80 different things when you listen to how she says it.
When I couldn't get a job as a teacher after I got my Bachelor's, I looked into going to grad schools. Wouldn't you know it, the one program that actively recruited me and offered me a work-study package was the University of Kansas certification program for teachers of kids with (are you ready for this certificate title?) "significant, severe/profound and multiple disabilities including deaf blindness." That is my (Kansas) teaching certificate. I can teach kids in Kansas with significant, severe/profound and multiple disabilities including deaf blindness ages 0-21. That is hard to fit on a resume.
But this figured. In my life, I always trickle over to where I am most needed. The more they need you and the harder the job, the less they care if you are disabled or not. But I liked these kids, so it worked for me and I did my grad program there. I took many, many classes on augmentative communication. Learning to communicate with "nonsymbolic" kids who did not use any form of language to communicate. I worked on a project where we took loads of data on nonsymbolic kid's behavior states to find patterns of communication there. I worked on lesson plans where things were task analyzed down to such minute detail as to make picking up a toothbrush into 50+ steps. Each one to be taught in a systematic isolation. I worked extensively on the concept of "partial participation," which is finding tiny but frequent ways for kids with disabilities to be included into the mainstream. Some of it was bullshit, some of it was great. But overall, these kids were valued in this program.
I worked with a lot of disabled kids in my 3 years at KU. I had my favorites there, too. I worked with a foster mom of 12 disabled kids. Two of her kids I worked with extensively. Both were the same age and had very similar disabilities. A boy and a girl, they were each visually impaired, quadriplegic with CP, and cognitively disabled. Chris, the boy could say a few words. Dana, the girl, could raise her right hand to say "yes." Chris was a fun kid, but I really, really got attached to Dana. The interesting thing is that I think the foster mom was more attached to Chris. When people look at these kids and see a shell, nothing...a life void and not worth living...I always want to ask them to explain then, why I like that kid so much. And why do other people have different preferences and bond with different kids differently? It is because they are human and they offer something to this world.
Dana was such a sweet girl. When I heard about the Ashley Treatment, where parents decided to force sterilize and stunt the growth of a severely disabled child via a hysterectomy, double mastectomy, appendectomy and hormone replacement therapy so that she would remain their small, prepubescent "Pillow Angel," I thought of Dana. Someone asked me to write about the Ashley Treatment when it happened. I was so sickened, I couldn't form words at the time. I don't know if I can explain this right, but this is what I remembered about Dana when I heard of this: When I first worked with Dana, she was a sixth grader. I would sometimes assist her paraprofessional aid with transferring her to a doctor's office exam style table that was set up in the school bathroom to change her diapers on. I have changed so many diapers, catheters, whatever-done so many suctions and feeding tube treatments, wiped so many snotty noses, that no body function phases me in the least any more. I certainly don't equate any body fluid management method to "dignity." So I would help with Dana and barely think twice about it. Then I didn't see Dana for several months. And I saw her again in the seventh grade. Again, one day I helped change her. Now I hope this doesn't sound weird, but this day I happened to notice that she was growing up, going through puberty. She had pubic hair and had started menstruating. And I remember looking at her and just thinking, "All right, Dana! You are growing up! You are healthy and your body is doing what it is supposed to do." It was like a camaraderie I had with her as a woman. I'm not all misty-eyed about menstruation or anything. I think it is a pain in the ass like most women do. But it was just another element of her human-ness that we shared as women. She was healthy, happy, thriving. She was becoming not a forever child but an adult. She would in a few years be my peer, not a student/child anymore. She would be a full-fledged adult. Even if she could not ever converse on my cognitive level, she deserved that. To be looked upon as an adult equal. A young woman who might experience a crush and all those crushy tingly feelings, even if she did never marry or become sexually active or have children. She deserved that and I was glad her health was letting her have that bit of normalcy when so many of her body functions were not working properly. No one should have a right to take that away from anyone just for convenience sake or a desire to infantilize and cute-fetishize a disabled person.
Kathryn pointed me to this essay called "The Other Story from a 'Pillow Angel': Been There. Done That. Preferred to Grow" that gives a first-hand account of someone who has personal experience with severe disability, institutionalization, and a version of the Ashley Treatment. It is excellent. And one of the most striking things it brings up is how so much cognition and emotion is missed by the outside world with these kids with multiple impairments. This woman was said to be severely mentally retarded and now she is writing books and essays. When things like communication, CP, vision and hearing impairments are involved, it should just be assumed by default that more is going on in these kids' minds and hearts than we can be aware of.
In my work with kids with significant disabilities, one of the most frustrating things I saw was the inability of professionals to implement good multi-modal communication systems for nonverbal kids. There is a load of wonderful technology out there to help nonverbal people communicate. It is amazing. Low tech devices like alphabet or picture boards that can be pointed to to high tech computerized speech synthesizers that are controlled by eye gaze can help nonverbal folks communicate. In my work as a teacher, I saw many great IEPs that mandated that students have these devices and be taught to use them. In reality, devices were not purchased, they were not maintained, the tech professionals did not know how to use them, they did not take the time to teach the kid how to use them, the kid could use them but her teachers wouldn't take the time to let her use them, the bottom line is that these kids were not being given workable communication systems. It was a crime that these kids were forced to go through school and their developmental years and their lives without a method of communication. The convenient excuse was that, well, they are too disabled to have much to say anyway. It is basically the equivalent of holding the keys that might help someone who is locked into the box their body has given them and dangling the keys in front of him before throwing them out into the river.
Meanwhile, I would go to KU, and see conference rooms set up with video links, electronic whiteboards, a laptop on every lap, and high tech multimedia presentations being given with computers. It is a matter of prioritizing. Can we sacrifice our technology and write notes on a pad and paper if it means that people who cannot even talk are given the tools they need to tell someone when they are in pain or what they want for breakfast?
There is a deep, deep seated prejudice against the most significantly disabled. The message is that they aren't worth the air they breathe and they have no value. This is the public's fear and sometimes hatred of them, often rationalized as wanting them not to suffer. I have another story about the crazy PICU woman at the children's hospital who hated me. Turns out, she hated all disabled people.
There was a three year old child in the PICU who had been in a near drowning accident and had been deprived of oxygen for several minutes. It was very sad. He was a typical kid and now he was severely brain damaged. Pasted on the outside door was pictures of this little blond boy with a bright face and smile doing typical active three-year-old things. Inside, was a kid who was listless and vacant. The mother was understandably a wreck. I would sit with her son while she took meal breaks. She didn't want him to be left alone. He did not really respond to much of anything but pain and hunger, thirst and fatigue. At this point, he wasn't on any life support, but would probably need a feeding tube in place. He could potentially gain more functioning in the months to come, but the outlook was grim. She cried one day when I was visiting. She said the worst thing for her as a mother was that she could no longer know what he needs. She didn't know if he was hot or cold or sad or hungry or happy. How would she be a good mother if she couldn't even know what her child needed? I said that there might be a way. I told her about the work that we did at KU with behavior states. I said it is incredibly time consuming and tedious, but what you do is you take data on what he does and you take data on the environment and you look for patterns. Chances are you will see communication and you will get to know his needs. He may always cry in the morning and you might realize that the sun is shining in his eyes through the window each morning starting at 5 am. Shut the blinds and problem solved. Communication! He may roll his eyes every time you feed him enfamil but smile happily when he gets ensure. Communication! He is a person and what he does is probably not entirely random no matter what anyone says. She asked me if I thought he should go to long term care. I said it was a personal decision that she would have to make. But that she shouldn't necessarily think that it won't make a difference to him. In long term care he is going to sit all day in a bed with no stimulation. She would have to work her ass off and change her whole life around. But she may provide him with opportunities to get up in a wheelchair and go outside and enjoy his favorite music and get some affection. I made sure to tell her that I was not speaking on behalf of the hospital nor was I telling her what to do, I just wanted her to have all the options and knowledge available.
Well, PICU boss was PISSED at me. Apparently I was not supposed to tell her anything but to encourage her to get that kid to the nearest long-term care facility pronto so he was triaged right out of the hospital's concern. If he doesn't go on to long-term care, she will expect PT and OT and SP and DME and AT and all the stuff that no one wants to provide. She accused me of giving the mom "false hope." I asked how I could give her false hope when I never gave any impression that I thought the kid would recover. I didn't think he would recover much if at all. I only educated her on what options were available for her kid. those aren't false, they really exist. I suppose I did plant the idea in her head that he is still a person with needs. And just because he can't communicate anymore is not an excuse to rationalize that he can't feel pain nor have any preferences about whether he might want to lay in a bed for the next 50 years with no stimulation or whether he might enjoy getting up and about and feeling the wind on his face and the laughter of his family and the love of his mother. That has nothing to do with how cognitively disabled he is, that's just what any living being would want. And we can't pay for that, why? Because imprisoning him in a white room with four walls for the rest of his life would allow others to travel to Borneo and buy 6 SUVs and a multimillion dollar home? Because when it comes down to it, these are the economics we are talking about.
Why this matters to you and to me and to everybody is because this could happen to any one of us or our children or our loved ones. This idea that there is a direct hierarchy between bodily or cognitive function and human worth is damaging to us all. At the most superficial levels, it is the reason why magazines are filled with perfect and unattainable airbrushed bodies. At the most basic level, it is the reason why Terri Schiavo is dead. But it affects all of us on some continuum in-between.
Take my mother, for example. My mother was an intelligent able bodied woman for the first 55 years of her life. In the last ten months of her life, she became disabled. Her brain tumor affected her cognition and her personality. Surgeries and chemo and radiation affected her ability to walk and talk and use her hand. Drugs affected her appearance, rendering her bloated, bald and discolored. We all had a pretty good idea she was going to die soon as soon as she was diagnosed with glioblastoma. The illness and the treatment in and of itself was awful enough for anyone to go through in what they knew would be their last few months of their lives. But what was hardest for me to grasp, was how her worth as a human plummeted in the eyes of everyone around her, including herself, as she became more and more disabled.
I do understand the grief everyone felt of losing the person she used to be. I felt it. One of my last happy memories of her was when I came home a few days before her brain surgery and she was still cognitively intact and still looked like the well-put together mom I always knew. It was hard to let that mom go. But the phases of the disabled mom she was to become in the next few months did not equate to a loss of dignity or worth to me. It did to almost everyone around me, though. My sister came home from visiting her a few days after her brain surgery. She said something to the effect of that it was just like talking to a first grader and if that is how it is going to be from now on then she might as well just die. I know that I was more practiced at handling the fast-paced changes that she was going through then my sister was. But when you have medical treatments and cancer and death looming, why must you worry about whether your family thinks you are worthy anymore or hospice or whoever has to wipe your ass? Why should you have to worry about being a burden? Your self-worth should be evident. Not only because of who you used to be, but because of whoever you are right now. You should know that no matter your condition you will be taken care of. You should not have to feel guilty or ashamed about going through the natural process of disability or dying.
As our parents move into old age, many of them will become disabled and many of them will lose cognitive functioning. As hard as that is, they are only burdens to us because they are no longer valued and we get no support to assist with their care. Our healthcare system is designed so that the best option for any disabled person is death. Or at the very least, the most minimal care available. This drives friends and family to the same conclusion. They have jobs and kids and burdens and no support, so their only way out is for the disabled person to die. It is all conveniently rationalized as "well the person will no longer suffer." "The person does not want to live like this." It is tough to be disabled, but it is a lot tougher to be disabled and be thought of as not worthy of being alive.
This affects me as well. I am slowly going deafblind. Even though it doesn't affect my cognition, people treat me like it does. I can tell people I am deaf blind until I'm blue in the face and that I need this, this, and this to communicate. But they would rather attribute my deafblind quirks as personality deficits. If you can't make it in the world of social norms, you can't make it and thus are not important. Deafblindness is considered a severe disability that people think makes life not worth living. As I become more disabled, people distance themselves from me. I have been in a few relationships where the break up line was, "Lisa, you are great, but I can't handle the long-term affects of your disability."
D and I were just talking the other day about my friend, J who I've mentioned recently. I love J, but I laugh about that friendship because it is my longest friendship that never really got started. I think on some levels we like each other, but on another we hardly know each other either. We also keep our distance. This may be for a lot of reasons, but one of the elephants in the room is my disability. I will always remember one day I was helping a disabled friend out at the skating rink. He had CP and a cognitive disability. He worked at the rink and always wanted to skate and no one would let him. I said he should skate if he wants to, he's an adult. So I helped him skate by basically holding him up as he stumbled across the ice. J was there. When I was helping this person skate, J cleared far away from me. Later he said something like, "I can't talk to him. I feel too bad when I talk to him." Or something like that about being uncomfortable. Right then, I knew that J was the type of person who was too dependent on social norms and etiquette to make it for the long haul with me as a disabled person. J seemed to want well-defined and inflexible etiquette in social relationships. To be in a relationship with a disabled person, at some level you have to blow all that off and not worry about it and make your own rules. Is he going to learn sign language and do tactile signing with me if it comes to that? Is he going to come over to my house and just hang out in the environment that I can communicate best in? Is he going to sit there with me and patiently wait for my software to catch up to speed in an IM chat? Is he going to be willing to do all the driving and slow down and be my sighted guide on a hike or walk somewhere? Is he going to want to be seen in public with me when I'm both white caning and signing and the whole room is staring and looking on him with pity for being with me like they do? Um, doubtful. I'm probably being unfair by picking on him a bit here, but he is not atypical. It all just seems like charity work to them, because I am less than able and thus they don't see it as being a two-way street with a level playing field where perhaps I can offer them something of value in return for their effort.
But there are people who can roll with it, like with D or Nik. D, who can't even sign at all and can't type worth a shit on the computer very much-- I don't worry about him. He doesn't care. He'll figure out some way to tell me about Art Bell and UFOs and remote viewing. Nik has already made it clear to me that he will do whatever it takes. He's all down with platonic tactile-ability. There are also a few able bodied people, that I know will desire a relationship with me enough to hang in there for the whole journey. Why? Well, maybe because I am a great person!! But mostly because they know the secret. That people, anyone-not just me-- are worth it. Humans deserve respect and compassion and most of all effort and that is what we are talking about here. Just a bit of effort.
So, I have felt a kinship with those with significant cognitive disabilities, not just because I have become friends with some of them, but because I am not so far removed from some of them. I feel a responsibility to them to help carry their message. I have the ability to speak and write, and if I can do that on behalf of someone who can't, then I'll do my damnedest to get it right.
And also, my relationships with my more significantly disabled friends have given me a great gift. And it isn't the "oh, isn't she so inspirational gift." And it isn't the "When I look at how bad they have it, my little problems don't seem so bad" gift. It is the gift of really, truly understanding that everyone is worthwhile. Of really knowing that you can value someone who is not rich or pretty or smart or physically functional or whatever such other bullshit things people think they need to be loved. My love and esteem and respect for people like Tom and Dana and Mary and several others I haven't even told you about makes me realize that no matter how deafblind and clutzy and poor and clueless and socially inept I am, I deserve love and esteem and respect, too. I don't need this artificial stuff to know that I am a good person. This is the universal truth we could all figure out if we just embrassed the gifts that people with the most significant disabilities have to offer us. Knowing that everyone really gives something to this world also gives you an incredible bullshit meter. When women worry about their weight or their boob size or any other stupid measure of their fuckability or when you see 500 commercials about men wanting a bigger penis or car or bank account or whatever, you know that in the end, it is all bullshit. Money, power, even brains... they are nice but they only are what they are. They aren't everything, and sometimes they aren't anything.
Give me a pile of poor SSI, section 8, group homed, no social skilled, slobbering disabled people (and their able bodied allies) who get this any day over a group of slickly dressed, overeducated, high powered, SUV driving, materialistic hipsters who think they've got it all any day of the week and twice on Sunday.
Whatever you want to call them, significantly disabled people will always be my peeps, and I will fight for their issues as if they are my own. Because they are. Because their issues are the most basic fundamental things that are so very important to all of us. The right to be treated as an equal and valued human being.
delurking here -
as someone who has spent some time in the PICU (and SICU, and BMT Unit), this really resonated with me. units are scary places where people are sometimes redefined, and i really liked your point that the redefinition does not have to mean worse...just different.
thanks for another great post!
Posted by: Indie mam | June 26, 2007 at 03:13 AM
Put me on the list of folks who like the long ones...
You really touched on many important points in this one. As an educator of children with disabilities I wondered (and was very naive) about how the diabled are viewed in our society. Now that I am a mother of two disabled children I know firsthand that society as a whole needs an attitude adjustment. Just because my kids are different and quirky and need extra assistance does not mean that their lives are worthless! They are human beings and deserve all rights and priveleges that every human being deserves. I cannot begin to tell you how my children are treated in public. The stares, snide remarks, things said under breath that I am not supposed to hear (or maybe I am!) the list goes on. They are CHILDREN and they are treated this way! When their abilites/disabilites become more and more apparent I wonder how it will be for them. It breaks my heart as their mother that anyone would see them any differently than I do: Amazing, happy, intelligent children with bright smiles, deserving of love and respect.
Thanks for bringing up many important issues.
Posted by: The Domestic Goddess | June 26, 2007 at 05:13 AM
Awesome post! HAPPY BIRTHDAY!
Posted by: Mariluz | June 26, 2007 at 12:32 PM
Happy Birthday to you and your friend! From a devoted fan of your's.
Lantana (only deaf, but it's enough for me).
Lantana's Latitude
Posted by: Lantana | June 26, 2007 at 04:43 PM
I do like the long ones, but pretty much only yours. Truly awesome post. i work in a huge inner city hospital that is the only healthcare available for many people, and I see these issues come up a lot, though more in the area of mental health. I'm so very sick of the eye rolling that goes on in my workplace when someone comes in that has a lot of needs and has trouble communicating them clearly or knowing to ask the "right" person. I'm so sick of getting crap for deigning to help when I can. Thank you for this. Perhaps it will make me a little braver when I defend my strategies with walk-ins.
Posted by: Emmie (Better Make It A Double) | June 26, 2007 at 08:19 PM
Thank you for writting this.
I am a woman with no disabilities. My daugther has a small temporary disability and my wife and I are trying to do a special-needs adoption.
I read your blog as a way to be educated about disability.
I am the one who suggested in another comment that you become apublic speaker and educator on disability and ableism.
Thank you for helping me identify and, hopefully, get rid of my prejudices.
Hugs
Lucía
Posted by: Lucía Moreno Velo | June 27, 2007 at 02:03 AM
I'm a lurker delurking to say that I loved this post--heck, I love all of your posts. You have opened my eyes to so many things, especially issues surrounding disabilities.
I started reading your blog when I found a link on another twin mom's page when you posted your 'day in the life of twins' in photos. I was floored at how much you give you to your kids, and how lucky they are to have such a great mom. I thought "who is this woman, she's making the rest of us look bad!". I had no idea while reading that post that you are deafblind...you are an amazing woman. I am fully abled and can't do half the things you do with and for your kids, it makes me so angry when you post about some of the nasty comments you're received IRL.
I agree that you are a fantastic voice for educating our society, I would love to see you get involved with doing public speaking or writing to help more people realize their prejudices. I never even realized how deeply ingrained some of my prejudices were until I started reading your blog.
Also, it just occurred to me; I don't know if you have any experience with feeding therapy, but grrltravels is starting that with her daughter and is looking for some guidance.
Posted by: Jeanne | June 27, 2007 at 08:07 AM
Happy Birthday!
The problem with the really long posts is that I want to write one in the comments in response! But I'll refrain.
You are right on, as usual. I think a really sad thing about Ashley and her treatment is that her parents clearly believe they would not be able to get the help they needed if they she became larger. And, to some extent, they have a point. If she starts needing outside attendants things become more complicated and she is exposed to more people, some of whom might not be kind. Surgical stunting is not the answer, but it sucks that the question of enough, and quality, care is even an issue.
As I've mentioned, my husband used to work with DD adults and some of his coworkers were not people I would want taking care of me. And he quit one job because of how mean the caregivers were. That was Fircrest, in Seattle, where they recently started housing *children.* Anyway, I don't know what my point is, except that everyone has value by virtue of being human and alive, and you state it well.
Posted by: cherylc | June 27, 2007 at 12:37 PM
What a spectacular writer you are and what a beautiful message ypu have written. I admire you very much. I would love to quote you on my blog and add a link to yours - may I? (pls see my blog at www.strangeson.com)
Best wishes in all you do, -Portia Iversen
Posted by: Portia Iversen | June 27, 2007 at 02:27 PM
On the subject of assisted speech debvices are you familiar with http://www.schuylersmonsterblog.com/
The blog is written by the father of a kid who has a genetic condition that makes her unable to form consonant sounds and she uses a speech device to communciate. Interesting stuff.
Posted by: Jess | June 27, 2007 at 04:45 PM
I meant to ask - you refer to "I worked on a project where we took loads of data on nonsymbolic kid's behavior states to find patterns of communication there." I would be very grateful if you could point me toward some of these kinds of studies. Thank you again for your fantastic blog entry and Happy Birthday! You've given US a gift on your birthday. -Portia Iversen
Posted by: Portia Iversen | June 27, 2007 at 06:03 PM
As usual, you use every sentence of your long posts to bring the point home... Thank you again for opening my eyes to these issues.
I work mostly with the elderly and mostly in a nursing home, and I see this problem (cognitive ability and/or ability to communicate = worth) all the time. I am lucky enough to work in an exceptional nursing home where there are quite a few younger disabled residents and where the staff uniformly treats everyone with respect and caring regardless of what they can say or do or how they look. Of course, that doesn't negate the fact that it's a nursing home and has all the obnoxiousness of an institutional setting; but it just makes me sad that I work in this little bubble where people with disabilities can use their abilities and be seen as valuable members of our little village, but as soon as they leave the campus they are automatically looked down upon by people in the outside world.
I second the comments of other readers who implore you to do everything you can (with all your spare time, right??) to get this message out to the larger world - through your church, through politics, through journalism, whatever. Your experiences, and your perspective on them, are exactly what we need to hear.
Posted by: Meredith | June 27, 2007 at 07:54 PM
Thanks to all of you for the birthday wishes.
Portia,
That particular project was called ABLE, Analyzing Behavior States in Learning Environments. The principal investigator on it was Doug Guess.
Other PHD-y type folks who do a lot of research in this area are Beverly Rainforth, Pat Mirenda, Fredda Brown, Norman Kunc, um... Susan Bashinski, Kathy Gee. I don't know names of studies, so these are names of the top of my head that you could put into ERIC and have a good chance of getting some good research.
Also, a good resource is TASH, the Association for People with Severe Disabilities. www.tash.org
Posted by: Lisa | June 27, 2007 at 08:24 PM
#1 - HAPPY BIRTHDAY!!! wishing you many many more...
#2 - lisa, i absolutely love your blog. the way you write is wonderful, and this blog really hit my heart deeply. i so *get* your way of thinking and how you feel about your peeps ;) i think i have some of those feelings/thoughts in my mind and heart from working with the elderly. i spent a few years working with severe-dementia and end-stage alzheimer's and to the outside world, these people were pitiful, but they deserved to be loved and cared for and appreciated. other staff i know would think, why do you bother? why do you bother to do things to keep them moving and why do you play old music that they would have liked when they were in their early 20's and why do you HAVE to slow-dance with Grace whenever "moonlight serenade" and jitterbug when "in the mood" comes on? BECAUSE...i can see the way they react. even it is was non-verbal, they relaxed or laughed or just smiled and squeezed my hand. like a *THANK YOU for seeing me in this wacky dementia shell*
and they always responded to me. i know they may not have known *who* exactly i was to them. but they absolutely KNEW that they were cared about and special to me! i think this is what i love about nursing. i can give that worthiness to my patients, no matter where they are. or who they are.
thank you for this lovely lovely post. count me as one who likes the long ones too!
Posted by: gypsygrrl | June 29, 2007 at 12:45 AM
Dear Lisa,
Thank you very much for the references, I will look them up. Talk about odd synchronicity - I just sent a donation to TASH and was asking for more information - I was invited to a fundraising event by Sue Rubin and I had been out of town so I wanted to show my support but also wanted to know more about TASH. Well the answer came more quickly than expected because I am sure my note is still in the US mail right now! Thanks again, -Portia
PS may I use an excerpt from the"long one" on my blog? Pls let me know. Thanks.
Posted by: Portia Iversen | June 29, 2007 at 10:07 PM
Chalk me up as a (currently) able-bodied long-hauler. Why? Because you seriously f-in' ROCK. And I learn about whole, huge, new realms of reality from you. Never boring.
Posted by: Shannon | June 30, 2007 at 10:12 PM
Thank you for writing this post. I read it with a smile. It was well written and educational. Most of all it has helped me to challenge my own prejudices that I wasn't even aware existed. Thanks again.
Posted by: Melanie | July 01, 2007 at 02:18 AM
Hi Lisa,
Excellent post. I do like the long ones.
For clarification here is the exact link to Anne's website:
http://www.members.optusnet.com.au/~anne.mcdonald/Anne_files/AnneHome.html
Posted by: Kathryn | July 02, 2007 at 11:19 AM
Do you have Usher's Syndrome? is that why you are going deaf-blind? My mom's roommate in California has Usher's and he was born Deaf and is slowly going blind.
I really enjoyed your post. It was very thought-provoking and pointed out some things I never would have thought about. You give me inspiration!
Posted by: Karen | July 16, 2007 at 07:28 PM
Hi Lisa-
I don't mean to bug you, but I would still like to excerpt a part of your beautiful "long one" on my blog or just put a link to it. Would that be Ok with you? It is such an inspiring, moving, thought-provoking piece. Thank you, -Portia Iversn
Posted by: portia Iversen | July 19, 2007 at 11:03 PM