Too many people, even people I like, speak of birth defects casually
They speak of screening followed by "prevention" without thought or remorse
They consider less births with deformities positive progress
Some even know that number is propped up by doctor-urged abortions
They think of birth defects as a number on paper to be reduced
They would do better to think of them as "Becky" or "Joe"
They would speak less hurtfully if they thought of us as people
Q65.9 Congenital deformity of hip, bilateral...
Q97.3 Female with 46,XY karyotype...
Congenital sensorineural hearing impairment...
I am not my birth defects, but I was born defective
To deny it is to deny the forces that shaped my life
To ignore it is to dishonor my people with my silence
If I was born today, docs knowing all I do now,
they would have told my parents many true things:
"She will never run as fast as a normal child."
"She will experience terrible pain."
"She will have quality of life issues."
"She will require a wheelchair."
"She will never hear as we hear."
"Her life will be hard."
If I was born today, docs knowing all I do now,
they would fail to tell my parents many true things:
"She will be happily married."
"She will have wonderful friends."
"She will often be employed."
"She will not let her start dictate her finish."
"She will contribute to her friends, family, and the world."
"Her life will be worthwhile."
I don't care what others think of my life's quality
I am glad to have it, I choose to continue it every day
I am a natural part of the world, not a number
I am strong, vibrant, and unique
I am content to be me
Sep 2, 2007
Jul 18, 2007
Wedded in a Wheelchair
I wrote more generally about my and my sis's double wedding in my other blog, link at the bottom right.
That said, lets dig into the wheelie bits!
In planning the wedding, it was important to me that my dignity be respected. Balk's major request in early planning was that I wear white. Mine was that he, and preferably our whole wedding party, be sitting down. It worked out pretty well, I think:
http://www.fangclan.net/pics/unitypan.jpg
On the dignity line, the thing that most worried me about the whole wedding was our first dance. Balk is an unenthusiastic dancer, and was not excited about practicing. I like to dance, and have studied from videos on the net, but my chair has a really big honkin' front angle. We only got 10 minutes of practice before the big day. I was nervous, and it was really rough at first. (He ran me into a chair, heh!) Afterwards, though, things smoothed out and we got better. http://www.youtube.com/watch?v=OxK4KSd9cMI I've been trying to solicit opinions from people who aren't my best friends, for lack-of-bias sake. Feel free to leave a comment!
Ultimately, I think much of the triumph of that night was education. Many of the guests hadn't had any opportunity to see a wheeler outside a hospital tank. When you're a radiant bride, smiles from ear to ear, and looking great, no one asks "are you okay?". They just treated me normally, sat back and watched the show. It went as well as it did because our friends had taken the time to learn what my and Balk's needs and limits were. They tapped me on the shoulder when someone was trying to talk to me from behind, put just enough space for Camel to squeeze anywhere, etc.
In contrast, I have never felt so much an alien as when negotiating for our apartment. I had to answer the same dumb questions to three different ladies. I'm not exactly modifying the place! I'm just plopping an aluminum ramp perpendicular to the back entrance and a smaller one inside that can be shoved under the stairs. Its the same thing I've done when I stayed with friends there, so I hadn't expected to receive a third degree interrogation Gah! Finally, they agreed. Now I actually have to go out there in three weeks, and when I get a chance to post about the actual moving in process, I will.
I don't think I'll make it back to the crip blogging world again till at least September. See you then!
That said, lets dig into the wheelie bits!
In planning the wedding, it was important to me that my dignity be respected. Balk's major request in early planning was that I wear white. Mine was that he, and preferably our whole wedding party, be sitting down. It worked out pretty well, I think:
http://www.fangclan.net/pics/unitypan.jpg
On the dignity line, the thing that most worried me about the whole wedding was our first dance. Balk is an unenthusiastic dancer, and was not excited about practicing. I like to dance, and have studied from videos on the net, but my chair has a really big honkin' front angle. We only got 10 minutes of practice before the big day. I was nervous, and it was really rough at first. (He ran me into a chair, heh!) Afterwards, though, things smoothed out and we got better. http://www.youtube.com/watch?v=OxK4KSd9cMI I've been trying to solicit opinions from people who aren't my best friends, for lack-of-bias sake. Feel free to leave a comment!
Ultimately, I think much of the triumph of that night was education. Many of the guests hadn't had any opportunity to see a wheeler outside a hospital tank. When you're a radiant bride, smiles from ear to ear, and looking great, no one asks "are you okay?". They just treated me normally, sat back and watched the show. It went as well as it did because our friends had taken the time to learn what my and Balk's needs and limits were. They tapped me on the shoulder when someone was trying to talk to me from behind, put just enough space for Camel to squeeze anywhere, etc.
In contrast, I have never felt so much an alien as when negotiating for our apartment. I had to answer the same dumb questions to three different ladies. I'm not exactly modifying the place! I'm just plopping an aluminum ramp perpendicular to the back entrance and a smaller one inside that can be shoved under the stairs. Its the same thing I've done when I stayed with friends there, so I hadn't expected to receive a third degree interrogation Gah! Finally, they agreed. Now I actually have to go out there in three weeks, and when I get a chance to post about the actual moving in process, I will.
I don't think I'll make it back to the crip blogging world again till at least September. See you then!
May 9, 2007
Reflections on a Weekend
I'd like to state at the beginning, I'm not sure where this post is going. I feel a need to write it though, so I guess I'll find out. You're welcome to come along for the ride with me.
I had a pretty eventful weekend. I'm now married legally, though we haven't had our huge family affair yet. We had a party afterwards that was fun, but completely overstimulating for both of us. I fear that on our actual wedding night we're going to sleep through the good part!
Yesterday, my sister and I went on a tour of various government offices to get our new-last-name paperwork done. The trip was an absolute adventure in disablism, but I'm sure I don't have to tell anyone who reads this blog that! Government buildings are built very accessible, but the government employees are experts at making them less so. By the time I left the SSA building, I was frustrated enough to come very close to letting it all out on this poor lady who rushed to hold the door open for me, giggle inanely, and say "You're pretty good in that thing." I just managed to hold my temper in check, which is a good thing. Its hardly her fault I had been glared at impatiently by state and federal government employees for trying to negotiate the physical obstacles they had placed all over the joint.
Later that day, I fell into a long pondering about my pain levels and functionality. I spent twelve and a half years in serious pain 24/7, and came to accept the constant pain hazing as a condition of my life. I accepted that I would always be in full tactical planning mode for the simplest of home activities, that I would always be a burden, and that I would never have a good quality of life. (But hey, during this time I also just denied that I was disabled!)
The last two years have completely turned this view on its ear. Over the last two years of wheelchair use, my pain levels of ratcheted down immensely. These days, two aleve a day means I experience only intermittent pain.
It is a strange feeling, one I'm still getting used to. I feel more healthy, able, and strong than ever, even though I now mentally categorize myself as a disabled person. I'm in the process of getting married, setting up a new life in another state, and helping raise my niece. I'm active, happy, and have an undeniably good quality of life.
In fact, I was feeling so well I began wondering if I still needed to use the wheelchair at all! So after much pondering, I spent about three and a half minutes hobbling around the house, pushing the 'chair in front of me so that if I fell I wouldn't be stuck on the floor waiting for someone to rescue me. In that short time, my hips completely inflamed and starting shooting strong pains down into my toes. I had to accede that yes, in fact, I had not been miraculously cured when I wasn't looking. Unfortunately, my hips haven't forgotten the slight and are still yelling at me, but it was good to know. It was good to push my limits. It was important today, when the baby and I got stuck in the livingroom due to an oversight (which is down a hard ramp) to know that it was safer for me to shuffle the 20' to her crib and exert all my self control to keep my leg from collapsing than it was to try and balance her on my lap while attempting the ramp.
It fascinates me how much pain can become part of your self identity. "I am Tokah" quickly becomes "I am Tokah, that person who is in pain all the time." But I'm not. I'm just Tokah, and what I'm functional to do at my lowest doesn't define me anymore than how well I do at my best. I might currently be dextrous, mediocre at writing, and not conventionally attractive, but none of those things can define who I am. They color my life, cause me to have experiences that shape who I am, but becoming suddenly clumsy, a brilliant author, and beautiful wouldn't make me any less Tokah.
I had a pretty eventful weekend. I'm now married legally, though we haven't had our huge family affair yet. We had a party afterwards that was fun, but completely overstimulating for both of us. I fear that on our actual wedding night we're going to sleep through the good part!
Yesterday, my sister and I went on a tour of various government offices to get our new-last-name paperwork done. The trip was an absolute adventure in disablism, but I'm sure I don't have to tell anyone who reads this blog that! Government buildings are built very accessible, but the government employees are experts at making them less so. By the time I left the SSA building, I was frustrated enough to come very close to letting it all out on this poor lady who rushed to hold the door open for me, giggle inanely, and say "You're pretty good in that thing." I just managed to hold my temper in check, which is a good thing. Its hardly her fault I had been glared at impatiently by state and federal government employees for trying to negotiate the physical obstacles they had placed all over the joint.
Later that day, I fell into a long pondering about my pain levels and functionality. I spent twelve and a half years in serious pain 24/7, and came to accept the constant pain hazing as a condition of my life. I accepted that I would always be in full tactical planning mode for the simplest of home activities, that I would always be a burden, and that I would never have a good quality of life. (But hey, during this time I also just denied that I was disabled!)
The last two years have completely turned this view on its ear. Over the last two years of wheelchair use, my pain levels of ratcheted down immensely. These days, two aleve a day means I experience only intermittent pain.
It is a strange feeling, one I'm still getting used to. I feel more healthy, able, and strong than ever, even though I now mentally categorize myself as a disabled person. I'm in the process of getting married, setting up a new life in another state, and helping raise my niece. I'm active, happy, and have an undeniably good quality of life.
In fact, I was feeling so well I began wondering if I still needed to use the wheelchair at all! So after much pondering, I spent about three and a half minutes hobbling around the house, pushing the 'chair in front of me so that if I fell I wouldn't be stuck on the floor waiting for someone to rescue me. In that short time, my hips completely inflamed and starting shooting strong pains down into my toes. I had to accede that yes, in fact, I had not been miraculously cured when I wasn't looking. Unfortunately, my hips haven't forgotten the slight and are still yelling at me, but it was good to know. It was good to push my limits. It was important today, when the baby and I got stuck in the livingroom due to an oversight (which is down a hard ramp) to know that it was safer for me to shuffle the 20' to her crib and exert all my self control to keep my leg from collapsing than it was to try and balance her on my lap while attempting the ramp.
It fascinates me how much pain can become part of your self identity. "I am Tokah" quickly becomes "I am Tokah, that person who is in pain all the time." But I'm not. I'm just Tokah, and what I'm functional to do at my lowest doesn't define me anymore than how well I do at my best. I might currently be dextrous, mediocre at writing, and not conventionally attractive, but none of those things can define who I am. They color my life, cause me to have experiences that shape who I am, but becoming suddenly clumsy, a brilliant author, and beautiful wouldn't make me any less Tokah.
May 2, 2007
Oops?
Last night, I made a serious faux pass: I forgot to consider audience I was talking to, and in doing so pretty much ended the whole conversation. I had gotten so comfortable talking online to other members of the crip community, I goofed.
I was in an IM conversation with one of my friends who went away for school. The conversation meandered, from why my wheelchair was named Camel, to how he would want a 'chair with some kind of villain fighting acid spitting device, to how I was so anti-attachment I was trying to take the wheel locks off, to how I needed to learn how get off the floor and into the chair first before I could take that leap. He commented, "See, I wouldn't have thought of learning that in advance."
"That's kind of funny," I replied, "because I didn't think of it until..." and then I proceeded to casually tell him this story:
I was going to work one day. The mortgage company I worked for had a second floor suite. The elevator was a little jerky, and on my way up somehow I fell over backwards. I honestly don't know what precipitated the fall, as I hit my head in succession on the elevator door and then the floor and briefly lost conciousness. I woke up a minute or two later with my knees on my head, a pounding headache, and a realization I didn't know what to do. I had never learned to do a floor-to-chair transfer. I somehow hit the "open door" button and pushed Camel out into the hallway, then crawled out after him. The hallway down to the suite loomed, looking longer than ever before. I grit my teeth and started crawling it, pushing Camel alongside. A few people came out of their offices along the hallway, looked at me, looked away, and then rushed for the stairs. I finally made it to the suite, and my coworkers got me off the floor and back into Camel.
His only two replies were, "Wait, no one helped you get to your suite?" and after my affirmative reply, "That's terrible." And so a very pleasant 45 minute conversation was brought to a screeching halt. He sent me a funny link later, but we couldn't really get the chat going again.
The experience I described certainly was a negative one, overall. It was pretty humiliating and made me question my ability to work outside my home for a little while there. However, it was a fairly typical type of experience for an american PWD. Many like it are described in this thread. These things aren't shocking to us, they're common and shared experiences. I could list more like it, if I had reason to. It happens, its the kind of shared experience that binds disability culture together. The circumstances might be different, especially for someone who's impairment is mental instead of physical, but the feeling of being less than a person in that moment is the same.
Previous to joining the online crip community, I didn't feel comfortable in any context talking about it, though. I talked to my friends about matters of love, about shared hobbies and social drama. But I never talked to them about what it felt like to have one's chronic illness disbelieved, to be accused by family of faking needing a wheelchair, or anything of the sort.
This was a first for me. It was the first time I mentioned a seriously negative disability-related experience to an AB friend who isn't family for all intents and purposes. I feel a little guilty about it, about making things awkward between us. But on the other hand, I wonder if that doesn't need to happen more often. Do ABs really think that this stuff doesn't happen all the time? Are they that sheltered from it? Would education help? I don't have the answers, but now at least I have the questions.
I was in an IM conversation with one of my friends who went away for school. The conversation meandered, from why my wheelchair was named Camel, to how he would want a 'chair with some kind of villain fighting acid spitting device, to how I was so anti-attachment I was trying to take the wheel locks off, to how I needed to learn how get off the floor and into the chair first before I could take that leap. He commented, "See, I wouldn't have thought of learning that in advance."
"That's kind of funny," I replied, "because I didn't think of it until..." and then I proceeded to casually tell him this story:
I was going to work one day. The mortgage company I worked for had a second floor suite. The elevator was a little jerky, and on my way up somehow I fell over backwards. I honestly don't know what precipitated the fall, as I hit my head in succession on the elevator door and then the floor and briefly lost conciousness. I woke up a minute or two later with my knees on my head, a pounding headache, and a realization I didn't know what to do. I had never learned to do a floor-to-chair transfer. I somehow hit the "open door" button and pushed Camel out into the hallway, then crawled out after him. The hallway down to the suite loomed, looking longer than ever before. I grit my teeth and started crawling it, pushing Camel alongside. A few people came out of their offices along the hallway, looked at me, looked away, and then rushed for the stairs. I finally made it to the suite, and my coworkers got me off the floor and back into Camel.
His only two replies were, "Wait, no one helped you get to your suite?" and after my affirmative reply, "That's terrible." And so a very pleasant 45 minute conversation was brought to a screeching halt. He sent me a funny link later, but we couldn't really get the chat going again.
The experience I described certainly was a negative one, overall. It was pretty humiliating and made me question my ability to work outside my home for a little while there. However, it was a fairly typical type of experience for an american PWD. Many like it are described in this thread. These things aren't shocking to us, they're common and shared experiences. I could list more like it, if I had reason to. It happens, its the kind of shared experience that binds disability culture together. The circumstances might be different, especially for someone who's impairment is mental instead of physical, but the feeling of being less than a person in that moment is the same.
Previous to joining the online crip community, I didn't feel comfortable in any context talking about it, though. I talked to my friends about matters of love, about shared hobbies and social drama. But I never talked to them about what it felt like to have one's chronic illness disbelieved, to be accused by family of faking needing a wheelchair, or anything of the sort.
This was a first for me. It was the first time I mentioned a seriously negative disability-related experience to an AB friend who isn't family for all intents and purposes. I feel a little guilty about it, about making things awkward between us. But on the other hand, I wonder if that doesn't need to happen more often. Do ABs really think that this stuff doesn't happen all the time? Are they that sheltered from it? Would education help? I don't have the answers, but now at least I have the questions.
May 1, 2007
Universal Design... not!
Its 2007, and there is still disablism, in case anyone was confused on that point. ;) This is my entry for the second annual Blogging Against Disablism Day. The first one was my main vehicle into disability blogging, so I'm very happy to get to take part in it this year. I will apologize in advance, its not as grammatical or smooth as I might like. This is a topic I'm pretty upset about, and it shows.
As it says in my little bio blurb up there, I am among other things the third parent to a darling little girl who just turned six months last week. When she was first born, I was very worried about my ability to take care of her, but as I got a chance to try it out, my worries turned to a different tune. I was perfectly able to take care of an infant, what I was unable to do in many cases was make any use of any of the care devices. There is a notable dearth of child care equipment with room under it for my feet to go, or an arms level access.
So here we are, six months later. I can't use any of the highchairs we've seen, so I feed the baby on my lap with a towel to protect my clothes. I affectionately call her bouncer chair the "demon chair", as its terribly low to the ground and I hate being off balance when I put her in it. It makes me feel like I'm going to drop her. The changing table is an exercise in back pain, and the walker barely passes muster. And mind you, we knew in advance that I'd be taking care of her, and many of these things were bought with that in mind!
Cribs and playpens get a special mention. In the early days, we used a bassinet when I had the baby, and all was well. It had room underneath it for my feet, it had casters on the bottom, it worked great. But bassinets are a phase, and soon she was too heavy and mobile for her bassinet. The crib came out. Cribs, by their general construction, are useless for me. If the side is up, I can't reach over it. If its down, it blocks me from getting close enough to reach into the crib. Playpens have similar problems, even if I pull up along side, I can't get two arms into them. We're adaptable people, we looked at our other options. For a long time, she spent her days surrounded by many pillows on my bed. She loved it, it was easy for me to use, and we put off worrying about it. But this phase has also just come to an end. She is now capable of pushing herself over obstacles and off the bed about as fast as I can disengage my wheel locks.
There are some internet sites dedicated to disabled parenting, but mostly they show you how to build or adapt existing equipment, there's nothing you can just purchase and use.
On an interesting point, I have not actually had any problems with my hearing impairment in this way. The only sound based device, our baby montior, has a little light display to tell you what volume the baby is at.
I'm frustrated. I'm not a fanatic, not every piece of baby gear needs to be usable by 100% of the population to satisfy me. (Though of course, I'd be a huge fan.) I, for instance, will not appreciate a stroller who's catches are labeled in Braille. There should be one to buy, though, for those who do. And there should be strollers that hook into manual wheelchairs for propelling, and a high chair or two that has room under it for a wheelchair. There should be equipment that has bigger, easier catches for use by people with limited hand motion or strength. They sell utensils, desks, and even shoe aids for PWDs, but not child care gear??
Though society would like to think so, we are not sexless, infertile, spinsters who weave baskets all day. We are mothers and fathers, godparents and babysitters. We need adapted gear to take care of kids with just as much as we need aids for other daily living activities.
As it says in my little bio blurb up there, I am among other things the third parent to a darling little girl who just turned six months last week. When she was first born, I was very worried about my ability to take care of her, but as I got a chance to try it out, my worries turned to a different tune. I was perfectly able to take care of an infant, what I was unable to do in many cases was make any use of any of the care devices. There is a notable dearth of child care equipment with room under it for my feet to go, or an arms level access.
So here we are, six months later. I can't use any of the highchairs we've seen, so I feed the baby on my lap with a towel to protect my clothes. I affectionately call her bouncer chair the "demon chair", as its terribly low to the ground and I hate being off balance when I put her in it. It makes me feel like I'm going to drop her. The changing table is an exercise in back pain, and the walker barely passes muster. And mind you, we knew in advance that I'd be taking care of her, and many of these things were bought with that in mind!
Cribs and playpens get a special mention. In the early days, we used a bassinet when I had the baby, and all was well. It had room underneath it for my feet, it had casters on the bottom, it worked great. But bassinets are a phase, and soon she was too heavy and mobile for her bassinet. The crib came out. Cribs, by their general construction, are useless for me. If the side is up, I can't reach over it. If its down, it blocks me from getting close enough to reach into the crib. Playpens have similar problems, even if I pull up along side, I can't get two arms into them. We're adaptable people, we looked at our other options. For a long time, she spent her days surrounded by many pillows on my bed. She loved it, it was easy for me to use, and we put off worrying about it. But this phase has also just come to an end. She is now capable of pushing herself over obstacles and off the bed about as fast as I can disengage my wheel locks.
There are some internet sites dedicated to disabled parenting, but mostly they show you how to build or adapt existing equipment, there's nothing you can just purchase and use.
On an interesting point, I have not actually had any problems with my hearing impairment in this way. The only sound based device, our baby montior, has a little light display to tell you what volume the baby is at.
I'm frustrated. I'm not a fanatic, not every piece of baby gear needs to be usable by 100% of the population to satisfy me. (Though of course, I'd be a huge fan.) I, for instance, will not appreciate a stroller who's catches are labeled in Braille. There should be one to buy, though, for those who do. And there should be strollers that hook into manual wheelchairs for propelling, and a high chair or two that has room under it for a wheelchair. There should be equipment that has bigger, easier catches for use by people with limited hand motion or strength. They sell utensils, desks, and even shoe aids for PWDs, but not child care gear??
Though society would like to think so, we are not sexless, infertile, spinsters who weave baskets all day. We are mothers and fathers, godparents and babysitters. We need adapted gear to take care of kids with just as much as we need aids for other daily living activities.
Apr 12, 2007
Carnival #12
I'd like to welcome you to the 12th edition of the Disability Blog Carnival. Thank you for coming! I hope that the many excellent submissions we have in this edition inspire as much thought in our readers as they did in me. The topic for this edition was "Disability and Culture".
Crip Culture
What is disability culture? Steve Kuusisto explores this question in Porcupines. This older post of Marmite Boy's also discusses Crip Culture. I highly recommend reading through the comments for a lively discussion of the topic.
Mark parodies the illogical splits in disability culture in Its Capital is Cripoplis. Steve Kuusisto takes a more serious look at them in School Controversy In Columbus.
NTs are Weird details six common fallacies in Disability Community Annoyances.
Assistive Technology in Cultural Context
Andrea explores the cultural differences between luxuries and necessities in "Cyborg Cool" Versus "Crip Pity".
Robert draws a vivid picture of children's easy acceptance of speech technology in Coffee Talk, while Ballastexistenz explains how "adult" cultural disapproval of speech devices hampers many people with autism in their attempts to communicate efficiently in The Real Barrier to Communication.
Lisa turns popular thinking about wheelchairs and what is embarrassing upside down in, Sometimes, I Wonder How Walkies Survive.
Joseph Shapiro wrote a brief history of Quickie and its political fallout in How a Woman Re-invented the Wheelchair.
Accessibility, Customer Service, and Plain Old Politeness
Sandy Clark posts about the heart of accessibility in LA Wake Up Call.
DarrenH debates historical and cultural value vs accessibility in London's routemasters -- icon or inaccessible dinosaurs?
Brokenclay shares her experiences with poor customer service in So demanding, or, what I want in a hotel.
Dave Hingsburger laments the modern day's diminished courtesy in Miss Manners.
Ranter expounds on Disability Dos and Don'ts.
Jules shares his experiences with discourtesy in Disability Soapbox. Ruth offers her own experiences in Do You Really Want to Hurt Me?
Zephyr presents her perspective on access to religous ritual and the joy of courteous able bodied friends in The Maiden Goddess and Me.
Disability On Screen & Stage
Jocelyn ruminates on disability and television in The Painless help the Painful.
Karen presents Through Deaf Eyes, And Through My Own, on the perspective a good documentary can grant.
For those tired of being cast as the inspirational do gooder, The Goldfish offers a different path in Nobody does it better, makes me feel sad for the rest.
Simi Linton recounts and comments on her experiences with Lazy Comics.
David is pleasantly surprised to find seamless inclusiveness on the stage in Hope on the Carousel.
Assumptions on Quality & Value of Life With Disability
Anne C takes on both assumptions at The Future Is For Everyone (Or At Least, It Should Be).
In Please don't speak for me and Is a disabled life worth living?, Jacqui and Ryn confront head on the assumption that parents of children with disabilities must be unhappy.
At "NTs are Weird", the author writes about Murder & Caring For Someone and combats the idea of "mercy" killing someone on the basis of their presumed low quality of life.
Dave Hingsburger wrote these two great posts about quality of life and disability, each from a different perspective: Normal and The Thing.
Josh Winheld presents a view looking back on life with Duchenne's in Genetically Speaking, both the ups and downs to a group of medical students.
Who to Blame?
Marymurtz writes a deeply moving post on homelessness, mental illness, and the urge to blame the victim for his troubles in Part 3.
NTE presents #uck "Suck it up", an excellent post on how mainstream culture's health views have shifted the blame onto the impaired and off of the impairment.
Mom-NOS presents A light in the darkness, a piece on the tendency of those with impairments to assume the fault when things go wrong.
Disability and Politics
Peter Tan contributes this eye opening look at the Convention on the Rights of Persons with Disabilities from the Malaysian perspective. Stephen Concklin contributes the American perspective.
No accord for disability rights in Himachal is a well documented essay on the poor state of disability rights in Ajai Srivastava's area despite theoretical legal protections.
Stephen Pate exposes PEI's interest in sex lives of disabled.
Midlife and Treachery presents A new "spin" on supercripdom, a view into how political figures with impairment impact society's perspective on disability.
Eeka discusses a Globe editorial makes a great case for changing the name of DMR.
Miscellaneous
Wheelchair Diffusion reports on Dream Toilet For Boeing 787 Dreamliner, complete with with questions as to how the wheelchair user would get to such a toilet without their wheels.
The Assertive Cancer Patient passes on De-Pink.
Crip Culture
What is disability culture? Steve Kuusisto explores this question in Porcupines. This older post of Marmite Boy's also discusses Crip Culture. I highly recommend reading through the comments for a lively discussion of the topic.
Mark parodies the illogical splits in disability culture in Its Capital is Cripoplis. Steve Kuusisto takes a more serious look at them in School Controversy In Columbus.
NTs are Weird details six common fallacies in Disability Community Annoyances.
Assistive Technology in Cultural Context
Andrea explores the cultural differences between luxuries and necessities in "Cyborg Cool" Versus "Crip Pity".
Robert draws a vivid picture of children's easy acceptance of speech technology in Coffee Talk, while Ballastexistenz explains how "adult" cultural disapproval of speech devices hampers many people with autism in their attempts to communicate efficiently in The Real Barrier to Communication.
Lisa turns popular thinking about wheelchairs and what is embarrassing upside down in, Sometimes, I Wonder How Walkies Survive.
Joseph Shapiro wrote a brief history of Quickie and its political fallout in How a Woman Re-invented the Wheelchair.
Accessibility, Customer Service, and Plain Old Politeness
Sandy Clark posts about the heart of accessibility in LA Wake Up Call.
DarrenH debates historical and cultural value vs accessibility in London's routemasters -- icon or inaccessible dinosaurs?
Brokenclay shares her experiences with poor customer service in So demanding, or, what I want in a hotel.
Dave Hingsburger laments the modern day's diminished courtesy in Miss Manners.
Ranter expounds on Disability Dos and Don'ts.
Jules shares his experiences with discourtesy in Disability Soapbox. Ruth offers her own experiences in Do You Really Want to Hurt Me?
Zephyr presents her perspective on access to religous ritual and the joy of courteous able bodied friends in The Maiden Goddess and Me.
Disability On Screen & Stage
Jocelyn ruminates on disability and television in The Painless help the Painful.
Karen presents Through Deaf Eyes, And Through My Own, on the perspective a good documentary can grant.
For those tired of being cast as the inspirational do gooder, The Goldfish offers a different path in Nobody does it better, makes me feel sad for the rest.
Simi Linton recounts and comments on her experiences with Lazy Comics.
David is pleasantly surprised to find seamless inclusiveness on the stage in Hope on the Carousel.
Assumptions on Quality & Value of Life With Disability
Anne C takes on both assumptions at The Future Is For Everyone (Or At Least, It Should Be).
In Please don't speak for me and Is a disabled life worth living?, Jacqui and Ryn confront head on the assumption that parents of children with disabilities must be unhappy.
At "NTs are Weird", the author writes about Murder & Caring For Someone and combats the idea of "mercy" killing someone on the basis of their presumed low quality of life.
Dave Hingsburger wrote these two great posts about quality of life and disability, each from a different perspective: Normal and The Thing.
Josh Winheld presents a view looking back on life with Duchenne's in Genetically Speaking, both the ups and downs to a group of medical students.
Who to Blame?
Marymurtz writes a deeply moving post on homelessness, mental illness, and the urge to blame the victim for his troubles in Part 3.
NTE presents #uck "Suck it up", an excellent post on how mainstream culture's health views have shifted the blame onto the impaired and off of the impairment.
Mom-NOS presents A light in the darkness, a piece on the tendency of those with impairments to assume the fault when things go wrong.
Disability and Politics
Peter Tan contributes this eye opening look at the Convention on the Rights of Persons with Disabilities from the Malaysian perspective. Stephen Concklin contributes the American perspective.
No accord for disability rights in Himachal is a well documented essay on the poor state of disability rights in Ajai Srivastava's area despite theoretical legal protections.
Stephen Pate exposes PEI's interest in sex lives of disabled.
Midlife and Treachery presents A new "spin" on supercripdom, a view into how political figures with impairment impact society's perspective on disability.
Eeka discusses a Globe editorial makes a great case for changing the name of DMR.
Miscellaneous
Wheelchair Diffusion reports on Dream Toilet For Boeing 787 Dreamliner, complete with with questions as to how the wheelchair user would get to such a toilet without their wheels.
The Assertive Cancer Patient passes on De-Pink.
Mar 22, 2007
Disability Blog Carnival on April 12th
I am hosting the April 12th edition of the disability blog carnival.
The topic is "Disability and Culture".
The topic is "Disability and Culture".
Mar 1, 2007
Dealing with Family, Old and New
Access means getting to a place where everybody else gets to, so you don't have to make special calls to warn them of your arrival.
-Itzhak Perlman
This past sunday, I had two family events to attend. The first was a brunch at a fancy restaurant to meet Balk's godparents. The second was a birthday party at my uncle's. I wasn't sure how long the first one was going to take, and told my uncle I probably wouldn't be able to attend the party.
Balk's family has had a tough time adjusting to the concept that they are acquiring a disabled daughter-in-law. They didn't have any visible physical disability in their family prior to my arrival, and I often get the feeling they would prefer it had stayed that way. Nonetheless, they called the restaurant before settling on it and interrogated them about their accessibility, not only in their entrances but also in their buffet. As it happens, the people at the place told them things that were less than true, but I really appreciated the gesture of thoughfulness.
I was genuinely sad I wouldn't be able to make it to my uncle's, because his house is the only one besides my own and I can get into and out of myself and actually socialize. Thankfully, Balk's thing ended just in time to head over, so we went unannounced. I braced myself for the usual drama and problems that generally are heralds of my arrival at a family member's doorstep.
Instead, something really wonderful happened. We got there, and it was just like any other couple in the family had arrived, with one major difference. Once I pulled myself up into the house and headed into the livingroom, I found my uncle folding up chairs and making me room to get around in. This might sound mundane, but this is the first time such a thing has EVER happened. He didn't even say anything about it, just treated me like a guest who wasn't some kind of crazy special burden, just treated me like family.
I don't think there is any way to convey properly to my uncle what his actions meant to me, or to Balk's mother. For the first time this weekend, I experienced access to family in Perlman's sense. I experienced consideration without forewarning and haggling, without prior arrangements between me and a family member. I just went to social things and the details were personally seen to without a fuss and without me having to be involved. I was treated like it was normal I was coming, normal that I was there. It was a good feeling, a feeling that can lead to healing and better interactions between me and my families, old and new.
-Itzhak Perlman
This past sunday, I had two family events to attend. The first was a brunch at a fancy restaurant to meet Balk's godparents. The second was a birthday party at my uncle's. I wasn't sure how long the first one was going to take, and told my uncle I probably wouldn't be able to attend the party.
Balk's family has had a tough time adjusting to the concept that they are acquiring a disabled daughter-in-law. They didn't have any visible physical disability in their family prior to my arrival, and I often get the feeling they would prefer it had stayed that way. Nonetheless, they called the restaurant before settling on it and interrogated them about their accessibility, not only in their entrances but also in their buffet. As it happens, the people at the place told them things that were less than true, but I really appreciated the gesture of thoughfulness.
I was genuinely sad I wouldn't be able to make it to my uncle's, because his house is the only one besides my own and I can get into and out of myself and actually socialize. Thankfully, Balk's thing ended just in time to head over, so we went unannounced. I braced myself for the usual drama and problems that generally are heralds of my arrival at a family member's doorstep.
Instead, something really wonderful happened. We got there, and it was just like any other couple in the family had arrived, with one major difference. Once I pulled myself up into the house and headed into the livingroom, I found my uncle folding up chairs and making me room to get around in. This might sound mundane, but this is the first time such a thing has EVER happened. He didn't even say anything about it, just treated me like a guest who wasn't some kind of crazy special burden, just treated me like family.
I don't think there is any way to convey properly to my uncle what his actions meant to me, or to Balk's mother. For the first time this weekend, I experienced access to family in Perlman's sense. I experienced consideration without forewarning and haggling, without prior arrangements between me and a family member. I just went to social things and the details were personally seen to without a fuss and without me having to be involved. I was treated like it was normal I was coming, normal that I was there. It was a good feeling, a feeling that can lead to healing and better interactions between me and my families, old and new.
Jan 31, 2007
Book Review: The Speed of Dark
While moseying through the SciFi/Fantasy section of the local Border's recently, one particular book caught my eye. It was "The Speed of Dark" by Elizabeth Moon. I was delighted to discover an unfamiliar novel by her, as she is one of my favorite authors. I flipped it over to read the back, wondering whether this was connected to either her fantasy or space opera series. To my amazement, it was neither. Instead, it turned out to be a piece of disability fiction, told from the perspective of an autistic man, set in the near future. Naturally, I picked it up and brought it home.
The majority of the story is told from the perspective of Lou Arrendale. In every event he is actually present for, we see the world from his point of view. When we meet him, he is an employee of a mega-corporation working in a specialized unit with other auties. He is content with his life and with being himself. He enjoys his job, has a comfortable routine, a crush on a girl, and is part of a fencing club. Then a new factor comes into his life: a new boss, who thinks he and his coworkers need to be cured. It starts out as an intellectual discussion, but the tension grows as his megacorp actually buys the cure and attempts to force them to take it. Now Lou must consider whether he is willing to lose his job and independent lifestyle, or whether he is willing to lose his identity.
Like any decently thought provoking book, this novel doesn't just answer the question it poses. It provides a lot of good cure vs anticure debate, explores the issue fearlessly, and allows the reader to come to his own conclusion of where right and wrong lies. It also takes on many side issues related to autism, including interpersonal relationships, religion, and the bias of the medical professions.
I loved this book... no, I fell into this book, occasionally surfacing for air and food. It was very hard to put down, and caused me a few sleepless nights. Whether you're aware of the debate over a cure or already have an opinion, this book provides much food for thought.
9.5/10
The majority of the story is told from the perspective of Lou Arrendale. In every event he is actually present for, we see the world from his point of view. When we meet him, he is an employee of a mega-corporation working in a specialized unit with other auties. He is content with his life and with being himself. He enjoys his job, has a comfortable routine, a crush on a girl, and is part of a fencing club. Then a new factor comes into his life: a new boss, who thinks he and his coworkers need to be cured. It starts out as an intellectual discussion, but the tension grows as his megacorp actually buys the cure and attempts to force them to take it. Now Lou must consider whether he is willing to lose his job and independent lifestyle, or whether he is willing to lose his identity.
Like any decently thought provoking book, this novel doesn't just answer the question it poses. It provides a lot of good cure vs anticure debate, explores the issue fearlessly, and allows the reader to come to his own conclusion of where right and wrong lies. It also takes on many side issues related to autism, including interpersonal relationships, religion, and the bias of the medical professions.
I loved this book... no, I fell into this book, occasionally surfacing for air and food. It was very hard to put down, and caused me a few sleepless nights. Whether you're aware of the debate over a cure or already have an opinion, this book provides much food for thought.
9.5/10
Jan 20, 2007
The Beauty of Mush
I love music.
This may seem a simplistic and obvious statement, but in my life it is not. I am not deaf/Deaf. I can hear at almost normal volumes - 80% in one ear, 85% in the other. However, once that input comes in, it isn't automatically translated into information for me to act on. Its just a mush, sitting there, demanding manual processing. A simple fan can reduce me to purely lip reading. As a joke, college friends once switched the audio language on a movie from english to french for ten minutes. I didn't notice, I just thought I was hearing more poorly than usual.
Interaction with the world in an audio way is a terribly stressful procedure. At any one time, I may be devoting as much as 60% of my mind to translating sound. It is very draining.
And yet, despite that, I love music. I can't begin to understand the lyrics the first few times I listen to a song, but I love music. Music makes sense, it fits into its context. It is still mush, but it is beautiful mush. When hearing the world becomes too much work, when I want to wince whenever the next person talks, I put on headphones and relax into the music, not having to process it, just enjoying the ride. It is the most relaxing thing I can think of.
And yet, not all music is created equal. Much of what other's call music feels like nothing but noise to me. This most often occurs when a song is written to do nothing but enhance a vocalist. To me, the vocalist is just another instrument, who conveys the message of the song a tad bit more directly than the music itself. The truly good music, the stuff worth listening to, delivers its message via the entire sound. The first time I heard the Yes song "Gates of Delirium" was purely instrumental, and not even the whole thing, yet I knew exactly what it was about. As the first sounds of the slide guitar sidle into your ears, you can feel the longing for peace, the sadness and loss the narrator has experienced. By the end of the song, you stand alongside him in the hope for a less war-torn world. "The Storm" by Blackmore's Night is so well composed that listening to it conjures the feeling of raindrops hitting your head, even if you can't understand the lyrics.
So, having said that, I would like to discuss Ludvwig van Beethoven. I can sink into much of Beethoven's work for hours, given the chance. Yet, some of his pieces fail to move me. With some research, I found that these most of those pieces were written before 1794, when his hearing began to flounder.
He wrote to a friend from the old country, Karl Amenda, in 1801 "Your Beethoven is most wretched. The noblest part of my existence, my sense of hearing, is very weak." In 1802, he wrote in the Heiligenstadt Testament, "O how harshly was I repulsed by the doubly sad experience of my bad hearing, and yet it was impossible for me to say to men speak louder, shout, for I am deaf. Ah how could I possibly admit such an infirmity in the one sense which should have been more perfect in me than in others, a sense which I once possessed in highest perfection, a perfection such as few surely in my profession enjoy or have enjoyed." He later went on, "what a humiliation when one stood beside me and heard a flute in the distance and I heard nothing, or someone heard the shepherd singing and again I heard nothing, such incidents brought me to the verge of despair, but little more and I would have put an end to my life".
He mourned his continuing hearing loss in a way I cannot truly understand, having been born with mine. He tried many different treatments, constantly seeking to be "fixed". He was finally considered deaf in 1806, yet between 1805 and 1815 he wrote many of his best and best known pieces, despite losing the "noblest part of his existence".
Beethoven's work in those years and years following are very whole music, not requiring the listener to be able to pick out separate parts. It is a music that resounds in the soul without any need to be processed. It is no surprise to me that he wrote it while he was losing his hearing. While he thought only of loss, he did not seem to consider the perspective on sound he gained, a valuable perspective, that it must also be beautiful in a mush.
I fear that today, at least in the developed world, so many of our Beethovens are caught for "early intervention", pushed into vocational training for things "they are more suited for" than they are interested in. I am also made sad by the modern commentary which still asserts that Beethoven fell into a joyless world of silence. With all of our society's supposed enlightenment, the masses still agree that impairment must be joyless, disability must cause despair, and that Beethoven is an inspiration for dealing well with his disability, rather than a bad example of doing so.
Mush and silence can be beautiful, too.
This may seem a simplistic and obvious statement, but in my life it is not. I am not deaf/Deaf. I can hear at almost normal volumes - 80% in one ear, 85% in the other. However, once that input comes in, it isn't automatically translated into information for me to act on. Its just a mush, sitting there, demanding manual processing. A simple fan can reduce me to purely lip reading. As a joke, college friends once switched the audio language on a movie from english to french for ten minutes. I didn't notice, I just thought I was hearing more poorly than usual.
Interaction with the world in an audio way is a terribly stressful procedure. At any one time, I may be devoting as much as 60% of my mind to translating sound. It is very draining.
And yet, despite that, I love music. I can't begin to understand the lyrics the first few times I listen to a song, but I love music. Music makes sense, it fits into its context. It is still mush, but it is beautiful mush. When hearing the world becomes too much work, when I want to wince whenever the next person talks, I put on headphones and relax into the music, not having to process it, just enjoying the ride. It is the most relaxing thing I can think of.
And yet, not all music is created equal. Much of what other's call music feels like nothing but noise to me. This most often occurs when a song is written to do nothing but enhance a vocalist. To me, the vocalist is just another instrument, who conveys the message of the song a tad bit more directly than the music itself. The truly good music, the stuff worth listening to, delivers its message via the entire sound. The first time I heard the Yes song "Gates of Delirium" was purely instrumental, and not even the whole thing, yet I knew exactly what it was about. As the first sounds of the slide guitar sidle into your ears, you can feel the longing for peace, the sadness and loss the narrator has experienced. By the end of the song, you stand alongside him in the hope for a less war-torn world. "The Storm" by Blackmore's Night is so well composed that listening to it conjures the feeling of raindrops hitting your head, even if you can't understand the lyrics.
So, having said that, I would like to discuss Ludvwig van Beethoven. I can sink into much of Beethoven's work for hours, given the chance. Yet, some of his pieces fail to move me. With some research, I found that these most of those pieces were written before 1794, when his hearing began to flounder.
He wrote to a friend from the old country, Karl Amenda, in 1801 "Your Beethoven is most wretched. The noblest part of my existence, my sense of hearing, is very weak." In 1802, he wrote in the Heiligenstadt Testament, "O how harshly was I repulsed by the doubly sad experience of my bad hearing, and yet it was impossible for me to say to men speak louder, shout, for I am deaf. Ah how could I possibly admit such an infirmity in the one sense which should have been more perfect in me than in others, a sense which I once possessed in highest perfection, a perfection such as few surely in my profession enjoy or have enjoyed." He later went on, "what a humiliation when one stood beside me and heard a flute in the distance and I heard nothing, or someone heard the shepherd singing and again I heard nothing, such incidents brought me to the verge of despair, but little more and I would have put an end to my life".
He mourned his continuing hearing loss in a way I cannot truly understand, having been born with mine. He tried many different treatments, constantly seeking to be "fixed". He was finally considered deaf in 1806, yet between 1805 and 1815 he wrote many of his best and best known pieces, despite losing the "noblest part of his existence".
Beethoven's work in those years and years following are very whole music, not requiring the listener to be able to pick out separate parts. It is a music that resounds in the soul without any need to be processed. It is no surprise to me that he wrote it while he was losing his hearing. While he thought only of loss, he did not seem to consider the perspective on sound he gained, a valuable perspective, that it must also be beautiful in a mush.
I fear that today, at least in the developed world, so many of our Beethovens are caught for "early intervention", pushed into vocational training for things "they are more suited for" than they are interested in. I am also made sad by the modern commentary which still asserts that Beethoven fell into a joyless world of silence. With all of our society's supposed enlightenment, the masses still agree that impairment must be joyless, disability must cause despair, and that Beethoven is an inspiration for dealing well with his disability, rather than a bad example of doing so.
Mush and silence can be beautiful, too.
Jan 18, 2007
Book Review: The Time Traveler's Wife
I picked up "The Time Traveler's Wife" by Audrey Niffenegger on a whim, having read the book jacket a few weeks earlier. The description sounded vaguely interesting at the time, and the author's last name was very memorable. Now that may be nice and all, but why did I decide to do a review of it on my disability orientated blog?
It is a moving and thought provoking piece of disability literature. I would recommend this book as a good read.
The protagonist, Henry, has great difficulty remaining in his current place and time, especially under stress. Worse yet, although he can and does go backwards in time, he cannot change the timeline. The novel tells the story of Henry's life with this disability and the life of his wife and caregiver, Clare.
Henry is everything I could ask for in a disabled protagonist. He is depicted as a real person, not an angelic figure, not as a villainous one. He is a man who does his best to get by in a world that isn't fit to him, doing whatever is required to survive. His personality, habits, and outlook are logical and well integrated with his life experience. Similarly, Clare is not a caricature or embodied stereotype.
Niffenegger does not shy away from the painful parts of their life together. She portrays the frustrations, the obstacles, the loneliness, the little victories, and the magical moments each in their time. I was particularly impressed by both her treatment of their consideration of and attempts at having a child, and her look into how disability can so easily drive someone into overuse of drugs and embrace experimental treatments.
Now, having put that out there, I will make my confession. There is a section in the back of the book that I am still unsure of how I feel about. It deals with the acquiring of a second disability and the interaction between the two. The deep understanding of life with a disability the author shows in the first eighty percent of the book seems to vanish, and suddenly a much more negative and stereotypical view of disability is revealed. It makes sense in context, but it did diminish my enjoyment of the book. I would like to expound on this part, but do not want to spoil the surprises for anyone.
With that said, my assessment is that this book rates a 7.5/10
It is a moving and thought provoking piece of disability literature. I would recommend this book as a good read.
The protagonist, Henry, has great difficulty remaining in his current place and time, especially under stress. Worse yet, although he can and does go backwards in time, he cannot change the timeline. The novel tells the story of Henry's life with this disability and the life of his wife and caregiver, Clare.
Henry is everything I could ask for in a disabled protagonist. He is depicted as a real person, not an angelic figure, not as a villainous one. He is a man who does his best to get by in a world that isn't fit to him, doing whatever is required to survive. His personality, habits, and outlook are logical and well integrated with his life experience. Similarly, Clare is not a caricature or embodied stereotype.
Niffenegger does not shy away from the painful parts of their life together. She portrays the frustrations, the obstacles, the loneliness, the little victories, and the magical moments each in their time. I was particularly impressed by both her treatment of their consideration of and attempts at having a child, and her look into how disability can so easily drive someone into overuse of drugs and embrace experimental treatments.
Now, having put that out there, I will make my confession. There is a section in the back of the book that I am still unsure of how I feel about. It deals with the acquiring of a second disability and the interaction between the two. The deep understanding of life with a disability the author shows in the first eighty percent of the book seems to vanish, and suddenly a much more negative and stereotypical view of disability is revealed. It makes sense in context, but it did diminish my enjoyment of the book. I would like to expound on this part, but do not want to spoil the surprises for anyone.
With that said, my assessment is that this book rates a 7.5/10
Jan 17, 2007
Disability Questions
I got these from Emma, who answered them very well. They seemed like an excellent place to start this blog.
1) If you could re-live your life without having your disability, would you?
This one is simple: no. My experiences throughout my life have been shaped by my various disabilities, and in so doing they shaped who I am today. They taught me patience, empathy, pragmatism, even cleanliness. Before my disabilities became more apparent to me, I was a very heartless and cruel child. They have shown me that my friends are truly my friends, and people who will never sweat the small stuff, or even the medium sized stuff. I would not trade my identity to suddenly be living the life of a person who could always hear, who had always been healthy and athletic and mobile. I have struggled, many a time, but my struggles have value.
2) Do you want people to show interest by asking personal questions about your disability?
As long as not all of their questions are such, certainly. Its natural for peole to be curious, and I'm glad they would rather ask than make silly assumptions. I believe the more people learn about how disabled life is, the more they will realize that we aren't all that different from them.
However, I very much dislike when people ask questions they would prefer not to have answered honestly and fully. If I am asked such a question, I had better have time to answer it properly, and you had better not act offended at my answer.
3) What is the hardest thing in life for you to do?
My biggest challenge is asking for and accepting help with tasks that I technically can do, but shouldn't be doing.
4) What is the hardest obstacle that you have to overcome often?
My pride, and other's assumptions of my capabilities
5) Do you resent people that try to help you?
I will glady accept help, even misguided help, from someone who is genuinely a kind person obviously looking out for my interests. Not only do they take "no" for an answer graciously, but they realize when they're getting in my way instead of helping me. (This often happens with would-be door openers.) I will accept that my friends are really trying to help me when they force food on me thinking I'm hypoglycemnic, even if I'm actually not.
I do resent people who help me in a patronizing manner, projecting an assumption of my incompetency. I resent people who help the poor wheelie to make themselves feel better, but ignore those who use crutches. I resent people who can't take no for an answer, or endanger me in the course of "helping". I resent those who insist on helping because I have to take something slowly, or think through the mechanics of a task. I resent those who help me to make themselves look better, or because they feel they have to. (Church people often fall astray of this one.)
6) Would you rather do things on your own?
If I can, without a lot of extra pain, without being a huge bother, absolutely.
7) Do you feel any anger towards God because of your disability?
I used to, but I don't anymore. Back then, I couldn't see any of the good results that could come of it. I wanted to be a missionary, I promised to do my best to become a missionary, and I couldn't understand why he took away my ability to serve him. I didn't understand what I had done so wrong that I would be cursed like this.
I have learned a lot since then. I am more of a missionary than I ever could have been traipsing around Lapland for two weeks. I have full faith that God has a plan for my life, and for my pain and trouble, and that it is worthwhile and will bear good fruit. I don't know what those fruit will look like, I suspect I won't know until I finish this journey. I have gotten to see small flowerings, though, and that will have to be enough for now.
8) What do you dislike the most of other people around you (ex- people staring, pointing, etc)?
I really hate it when people look away from me, but are talking to me. I can't lipread them, and the people who are doing it aren't familiar enough to me to hear decently otherwise. Other than that, I'd prefer they didn't throw rocks at me or anything like that. Pointing, staring, all of that is annoying but I can deal with it.
9) What is the best way for us to help you?
Step 1: Ask if I need help
Step 2: Assume I know what I'm doing
Step 3: Follow my directions, its better for both of us
10) Do you feel awkward when you are around people that are different than you?
I feel awkward around openly mean people. That is a difference I don't deal with well, finally being good natured myself. I don't do well among people who grew up with lots of money and the attendant luxuries. Other than that... I know and like people of many nationalities, levels of mental and physical ability, heights, interests, etc.
People are more alike than they are different.
1) If you could re-live your life without having your disability, would you?
This one is simple: no. My experiences throughout my life have been shaped by my various disabilities, and in so doing they shaped who I am today. They taught me patience, empathy, pragmatism, even cleanliness. Before my disabilities became more apparent to me, I was a very heartless and cruel child. They have shown me that my friends are truly my friends, and people who will never sweat the small stuff, or even the medium sized stuff. I would not trade my identity to suddenly be living the life of a person who could always hear, who had always been healthy and athletic and mobile. I have struggled, many a time, but my struggles have value.
2) Do you want people to show interest by asking personal questions about your disability?
As long as not all of their questions are such, certainly. Its natural for peole to be curious, and I'm glad they would rather ask than make silly assumptions. I believe the more people learn about how disabled life is, the more they will realize that we aren't all that different from them.
However, I very much dislike when people ask questions they would prefer not to have answered honestly and fully. If I am asked such a question, I had better have time to answer it properly, and you had better not act offended at my answer.
3) What is the hardest thing in life for you to do?
My biggest challenge is asking for and accepting help with tasks that I technically can do, but shouldn't be doing.
4) What is the hardest obstacle that you have to overcome often?
My pride, and other's assumptions of my capabilities
5) Do you resent people that try to help you?
I will glady accept help, even misguided help, from someone who is genuinely a kind person obviously looking out for my interests. Not only do they take "no" for an answer graciously, but they realize when they're getting in my way instead of helping me. (This often happens with would-be door openers.) I will accept that my friends are really trying to help me when they force food on me thinking I'm hypoglycemnic, even if I'm actually not.
I do resent people who help me in a patronizing manner, projecting an assumption of my incompetency. I resent people who help the poor wheelie to make themselves feel better, but ignore those who use crutches. I resent people who can't take no for an answer, or endanger me in the course of "helping". I resent those who insist on helping because I have to take something slowly, or think through the mechanics of a task. I resent those who help me to make themselves look better, or because they feel they have to. (Church people often fall astray of this one.)
6) Would you rather do things on your own?
If I can, without a lot of extra pain, without being a huge bother, absolutely.
7) Do you feel any anger towards God because of your disability?
I used to, but I don't anymore. Back then, I couldn't see any of the good results that could come of it. I wanted to be a missionary, I promised to do my best to become a missionary, and I couldn't understand why he took away my ability to serve him. I didn't understand what I had done so wrong that I would be cursed like this.
I have learned a lot since then. I am more of a missionary than I ever could have been traipsing around Lapland for two weeks. I have full faith that God has a plan for my life, and for my pain and trouble, and that it is worthwhile and will bear good fruit. I don't know what those fruit will look like, I suspect I won't know until I finish this journey. I have gotten to see small flowerings, though, and that will have to be enough for now.
8) What do you dislike the most of other people around you (ex- people staring, pointing, etc)?
I really hate it when people look away from me, but are talking to me. I can't lipread them, and the people who are doing it aren't familiar enough to me to hear decently otherwise. Other than that, I'd prefer they didn't throw rocks at me or anything like that. Pointing, staring, all of that is annoying but I can deal with it.
9) What is the best way for us to help you?
Step 1: Ask if I need help
Step 2: Assume I know what I'm doing
Step 3: Follow my directions, its better for both of us
10) Do you feel awkward when you are around people that are different than you?
I feel awkward around openly mean people. That is a difference I don't deal with well, finally being good natured myself. I don't do well among people who grew up with lots of money and the attendant luxuries. Other than that... I know and like people of many nationalities, levels of mental and physical ability, heights, interests, etc.
People are more alike than they are different.
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