Thursday, January 31, 2008
Congratulations to Scott Rains over at Rolling Rains Report
Dr. Scott Rains has been selected for the second stage of competition for the 2008 Echoing Green Fellowship with an Inclusive Tourism proposal. I'd like to extend both my congratulations to him on this achievement and thank him for all the work he continues to do toward inclusion of people with disabilities.
Visit Rome at the holidays - right here!
Courtesy of award winning Jesuit photographer Don Doll, S.J. you can enjoy a slide show of Rome right here from Wheelie Catholic. One of my favorite photos is that of the lights on in the Pope's residence, shining across the plaza.
Where's Emeril when I need him?
I love my friends, but none of them enjoy cooking. In fact, before I acquired my disability, I used to enjoy cooking for them. It wasn't unusual for me to invite folks over for a meal on the spur of a moment, and that goes back to when I was in college. My roommate and I used to always keep a pot of food on the stove, whether it was stew or soup.
Now my "cooking" is limited to pulling out the foil covered sandwiches and plates Meredith makes. On the weekends when my friends come over, I've had to make it clear that the food my aide makes me is "off limits" because we plan my meals and grocery shopping, etc. so I can't "share" or give away those meals to people who drop by.
What's developed is that a few friends 'grouse' about needing to deal with cooking. I've explained to them that I don't expect them to cook for me (especially if they don't enjoy it!) and so we often get takeout food. I thought this was a reasonable compromise until this past week, when I received a call from a friend telling me she was putting weight on because of eating takeout food when she visited.
I pointed out that she picked out the kind of takeout food she brought over and could bring a salad or something healthier, to which she replied "I guess." Then I said "You know, if food's an issue, why not just come over to watch a movie and leave the meal out of the equation?" I suppose for some folks, this might be the answer to the dilemma.
I had one sweetheart of a boyfriend who used to 'love' my Tyson ready made chicken, he said, even when he pulled it out of the packaging , microwaved it and put it on a plate with ready made macaroni salad.
"Mmmm," he would say, savoring each bite. "This is actually very good, thanks."
I don't expect everyone else to humor me with this kind of thing. But I must admit, I loved him very much for it. And I miss him.
Wednesday, January 30, 2008
New to the Blogroll: Patient Advocate Foundation
Patient Advocate Foundation's Mission Statement
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
It can be found here.
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
It can be found here.
Discovering ourselves in the love of God
"St. Bernard of Clairvaux describes as the highest degree of love the love of ourselves for God's sake. Thomas Merton calls this the high point of St. Bernard's humanism which shows "that the fulfillment of our destiny is not merely to be lost in God, as the traditional figures of speech would have it, like a 'drop of water in a barrel of wine or like iron in the fire', but found in God in all our individual and personal reality" [and, ultimately,] "that we see his will done in us."-The Genessee Diary, pg 85, Henri Nouwen
God's love isn't reserved for saints and mystics. It's there for the clueless disciples, the reluctant prophets, and even those of us who doubt, who struggle with the most basic of human faults in ourselves. It doesn't matter, you see. The love of God isn't reserved for a special few.
I was once on a retreat. One of the retreat-ants went to talk to a priest and spent an entire twenty minutes complaining to him about her life. Knowing that her problems were more from her perception of things than actual issues, the priest said to her "We aren't at this retreat to talk about our problems. We're here to find spiritual solutions" and sent her to the chapel to pray, where she met me. I was deep in prayer when she came in and began complaining to me, as she had done the entire weekend, how no one understood her.
I've been on staff at retreats for terminally ill people and found them less challenging than this woman, who had an excellent career, good childhood and lacked nothing in material wealth. Her external circumstances just were meaningless to her however. All she could see was what she didn't have and that one thing - not being married - caused her so much emotional pain that she dieted down to a size six. When that didn't help her find the right person, she came to the retreat, full of grief. The way she showed that grief was to vent. It was very hard to be around her.
So there I sat in my wheelchair in the chapel, fresh back from a retreat with terminally ill people, praying for a dear friend who died from MS. Perhaps because of this I could see that she was grieving for the life she did not have. Many of us run into these feelings as we get older and discover that maybe we won't get the education we need for that career we wanted or perhaps can't have children or may have things happen in our lives we just don't expect. What can happen is that we lose gratitude for what we do have and grieve for what we don't. And we don't get sympathy from others, but turn them away if we stay stuck there.
Her first words were "How could that priest understand what I'm going through? He can't get married!" I almost laughed, but instead turned to her and said "You're so sad that you haven't found the right person to marry", addressing her need openly. She nodded and began to cry, then leaned down and threw her arms around me, sobbing. "What's wrong with me?" she asked. "I've done everything to make myself better and no one loves me."
Gently, I told her that God loved her. She predictably scoffed at me, but I suggested that instead of feeling sad about the life she didn't have, why didn't she try to find ways to discover herself in God's love while she waited to find the right person. She rubbed her eyes and looked at me as if I had lost my mind, but then she said "I suppose I have nothing to lose." "And everything to gain," I said. And I shared the above passage with her.
Two months later, I received a phone call from her. She told me that the plans we drew up at the retreat, which included volunteering and reaching out to others without making the goal finding a husband, were working out. "I like myself better," she told me "and I made some new friends. In fact, I'm happier than I can remember being. I feel -" she hesitated- "loved, which was what I really wanted in the first place."
And after spending ten minutes on the phone with her, I even liked her better! Gone was her venting and complaining, gone was her self pity. Instead she spoke about her new, exciting life and shared that she signed up for a few more trips to help people out. "I took a lot of what I have for granted," she told me. "And I couldn't see that because I couldn't get out of myself."
Someone probably could have told her that at the retreat, but that wouldn't have helped her heal. What she needed was to feel lovable - even though many of us didn't think there was much hope of that when we met her.
Tuesday, January 29, 2008
Books and reluctant prophets
I'm reading Prophetic and Public: The Social Witness of US Catholicism by Kristin Heyer. It's an interesting - and timely book - considering the many social issues we all face in our country, ranging from poverty, homelessness, marginalization of people, and many others. Heyer discusses the writings of Charles Curran, Michael and Kenneth Himes and David Hollenbach, who are proponents of a public church and Michael Baxter's analysis of that view. There is also an interesting discussion of Murray's "incarnational humanism". Heyer points readers toward advocacy groups such as NETWORK, Pax Christi USA and the USCCB.
Her analysis of contemporary Catholic thought left me pondering many questions and issues. For example, I've written about the USCCB quite a few times and their guidance to the Church on issues concerning inclusion of people with disabilities - not only in the Church herself but in society in general. Many of their statements on economics and poverty deal with a myriad of social issues also affecting the disability population. Marginalization can occur due to a number of reasons.
And although the position of the USCCB on these issues is public knowledge and has been for over twenty years, the actual change in the Church has been slow. We see disability ministries cropping up. (See a list here of disability ministries by diocese.) Yet I have found that many Catholics remain unaware of the USCCB's writings in this area, which is both unfortunate and a bit sad, when you stop to consider the number of people whose lives disability touch.
I've sat in churches where people in wheelchairs are treated as if they are in the way ; where there not only aren't any Masses for the deaf, but no listings available for local ones; where blind people receive no hymnals or books in Braille; where volunteering and joining groups means exclusion from activities due to lack of access or negative attitudes - and I could go on and on.
I've also sat in churches where there are disability ministries and it is an entirely different world. Those congregations have a voice that speaks up and advocates for the needs of its members with disabilities. Not every disability ministry works as effectively or even in the same way, but there is much to be said for the fact that the very existence of such a ministry.
I realize that the social witness of US Catholicism touches ethical issues and is the subject of debate and intellectual discourse. There may always be some disagreement on how the Church should address issues concerning our society. It all makes for a very interesting subject.
But the book I'd like to see written would be about the growing emergence of disability ministries, their ripple effect and, on the other hand, the resistance to or apathy regarding such ministries where that occurs. There may be quite a few reluctant prophets out there who could help lead- and it would be helpful if the USCCB statements on disability were heard more often in the Catholic arena. Ultimately I believe change in this area will come through the voices of members with disabilities in the Church.
Monday, January 28, 2008
When Catholicism Was the Target
an interesting article - and perspective - on Catholicism and politics offered by a law professor at Notre Dame, touching on the Pope's upcoming visit and the legacy of John F. Kennedy in the context of today's political arena.
He writes:
"Thankfully, we live in a time when no one feels the need to take up arms to protect Cincinnati from Benedict's invading armies. We should always be on guard, though, against the temptation to demonize, dismiss, or distort the beliefs and aspirations of those whose faith seems foreign to us."
-via USA Today
He writes:
"Thankfully, we live in a time when no one feels the need to take up arms to protect Cincinnati from Benedict's invading armies. We should always be on guard, though, against the temptation to demonize, dismiss, or distort the beliefs and aspirations of those whose faith seems foreign to us."
-via USA Today
If I die, just tell everyone I'm enormously grateful...
Those are the last public words of Henri Nouwen, the Dutch-born priest who wrote over 40 books, after he had his heart attack. He is featured in the documentary Journey of the Heart: Henri Nouwen, which I saw last night on Netflix. (It was aired last April on PBS, according to this article about the documentary.)
Nouwen spent years teaching at both Yale and Harvard and gave up his tenure at Yale to spend a year in a Trappist monastery. While there, he worked alongside the other monks and struggled with loneliness while being out of the limelight. Later he was to move into L'Arche, a community where people with disabilities formed the "core group", living alongside others based upon the Beatitudes. Nouwen wrote about his experiences there. He was a complex man, who was admired for his genius, yet surprised people with his ability to engage in a child-like spontaneity. One author wrote that Nouwen dealt with the spirituality of imperfection.
In The Genesee Diary, Nouwen kept a journal of his experiences at the monastery, both external and internal. He was seeking a total commitment to God, away from the academic life of Yale. I am struck by his experience of silence, written about on page 133 of the diary, where he says that he finds "with words, ambiguous feelings enter into my life. It almost seems as if it is impossible to speak and not sin...In some strange way, speaking makes me less alert, less open and more self-centered." He then talks about St. Benedict, who wrote about the importance of silence. Nouwen wrote "Many people ask me to speak, but no one yet has invited me to silence."
I think of my Quaker friends, with whom I've spent hours in silent community. The silence is broken only by an occasional sharing or remark. There is a comfort in the crackling of the fire in the 200 plus year old fireplace, the warmth of my friend's guide dog's face in my lap, the ever present hum of electricity, added to the stone meeting hall. One time all I was able to do in that silence was imagine the schematics to put electricity in the old meeting hall. So unused to silence am I that I couldn't reach any other place, and afterward I recommitted myself to my prayer life.
Sometimes I yearn for the company of others who dare to be silent. I cherish the friends with whom I can sit and not have to perform, to speak, those with whom I can just be. Perhaps, in a way, one of the gifts I've received over the last decade since I acquired my disability, is that many of those who demanded things from me have gone on their way. Those who are left are indeed friends.
Sometimes all that there is left to say to others is that one is enormously grateful.
Nouwen spent years teaching at both Yale and Harvard and gave up his tenure at Yale to spend a year in a Trappist monastery. While there, he worked alongside the other monks and struggled with loneliness while being out of the limelight. Later he was to move into L'Arche, a community where people with disabilities formed the "core group", living alongside others based upon the Beatitudes. Nouwen wrote about his experiences there. He was a complex man, who was admired for his genius, yet surprised people with his ability to engage in a child-like spontaneity. One author wrote that Nouwen dealt with the spirituality of imperfection.
In The Genesee Diary, Nouwen kept a journal of his experiences at the monastery, both external and internal. He was seeking a total commitment to God, away from the academic life of Yale. I am struck by his experience of silence, written about on page 133 of the diary, where he says that he finds "with words, ambiguous feelings enter into my life. It almost seems as if it is impossible to speak and not sin...In some strange way, speaking makes me less alert, less open and more self-centered." He then talks about St. Benedict, who wrote about the importance of silence. Nouwen wrote "Many people ask me to speak, but no one yet has invited me to silence."
I think of my Quaker friends, with whom I've spent hours in silent community. The silence is broken only by an occasional sharing or remark. There is a comfort in the crackling of the fire in the 200 plus year old fireplace, the warmth of my friend's guide dog's face in my lap, the ever present hum of electricity, added to the stone meeting hall. One time all I was able to do in that silence was imagine the schematics to put electricity in the old meeting hall. So unused to silence am I that I couldn't reach any other place, and afterward I recommitted myself to my prayer life.
Sometimes I yearn for the company of others who dare to be silent. I cherish the friends with whom I can sit and not have to perform, to speak, those with whom I can just be. Perhaps, in a way, one of the gifts I've received over the last decade since I acquired my disability, is that many of those who demanded things from me have gone on their way. Those who are left are indeed friends.
Sometimes all that there is left to say to others is that one is enormously grateful.
Sunday, January 27, 2008
A Gaggle of Girl Scouts
Yesterday I rolled over to the local bookstore to see if they had any audiobooks on sale. Outside there was a table holding girl scout cookie boxes, lined up like soldiers. Surrounding the table was a group of a dozen or so girl scouts, with various pieces of uniforms on - patches, sashes, and/or caps.
And me. The quad. Heading toward them in The Beast at full power.
Cookies and I have a very special history. I grew up in a family where my dad worked for Sunshine Biscuits, a cookie company. Their arch enemy was Nabisco, so the one word we never uttered in our house was "Oreos". We also never bought girl scout cookies.
"Don't need those," my father would say. "We have plenty of cookies."
We did. He brought home boxes of cookies of all kinds. Marshmallow stuffed chocolate covered Kings that came off of the assembly line a tad crooked or Hydrox cookies (their oreos with a name that sounded like an acne medicine) with their tops on upside down. The factory workers knew that if cookies came off of the assembly line wrong, you could count on people taking them home for their kids if they boxed them up in cartons.
And so every Friday night my dad walked in with a box of misfit cookies for us and our friends- and took one over to the convent for the sisters to have with their tea. Every Saturday morning our friends came knocking on our front door to play - and asked surreptitiously "What do you have this week?", leaving with a handful of treats.
So when faced with this gaggle of girl scouts peddling cookies, my immediate reaction was to think "I don't need those".
But those faces. The question: "Would you buy some cookies?" The youthful exuberance of not one or two faces but an even dozen. I have five nephews and only one niece and have never been able to say no to her. Okay. So it's hard for me to say no to any of them.
"One box," I said. And with that the girl scouts went into action. Two little girls began to explain their product line, while two 'runners' lined themselves up at the bookstore door, explaining their job was to get change. Two others stood by to hand me the product(s) I chose.
Three girl scouts helped me get out my five dollar bill. Two others made sure the box of cookies was securely placed on my wheelchair, while the runners went to get me change ("Not fifty cents, a dollar fifty!" I heard them cry out when the youngest runner returned with two quarters). Several girl scouts then put my change in my wheelchair bag. It was a blur of girl scout badges, insignia and patches.
I tell you, it takes a gaggle of girl scouts to sell a box of girl scout cookies to a quad. It takes team work- it took every single girl scout there to make it happen. I never saw such an efficient, lean mean cookie selling team in my life. It renewed my faith in the future of American enterprise. It made me think they should be running homeland security.
A number of friends stopped by yesterday and all of them ate some of the girl scout cookies. "What do you have? Cookies?" they all asked, reaching into the box.
And I could picture the carton sitting on our kitchen counter, open for our friends' hands to grab the cookies.
Things haven't changed that much.
And me. The quad. Heading toward them in The Beast at full power.
Cookies and I have a very special history. I grew up in a family where my dad worked for Sunshine Biscuits, a cookie company. Their arch enemy was Nabisco, so the one word we never uttered in our house was "Oreos". We also never bought girl scout cookies.
"Don't need those," my father would say. "We have plenty of cookies."
We did. He brought home boxes of cookies of all kinds. Marshmallow stuffed chocolate covered Kings that came off of the assembly line a tad crooked or Hydrox cookies (their oreos with a name that sounded like an acne medicine) with their tops on upside down. The factory workers knew that if cookies came off of the assembly line wrong, you could count on people taking them home for their kids if they boxed them up in cartons.
And so every Friday night my dad walked in with a box of misfit cookies for us and our friends- and took one over to the convent for the sisters to have with their tea. Every Saturday morning our friends came knocking on our front door to play - and asked surreptitiously "What do you have this week?", leaving with a handful of treats.
So when faced with this gaggle of girl scouts peddling cookies, my immediate reaction was to think "I don't need those".
But those faces. The question: "Would you buy some cookies?" The youthful exuberance of not one or two faces but an even dozen. I have five nephews and only one niece and have never been able to say no to her. Okay. So it's hard for me to say no to any of them.
"One box," I said. And with that the girl scouts went into action. Two little girls began to explain their product line, while two 'runners' lined themselves up at the bookstore door, explaining their job was to get change. Two others stood by to hand me the product(s) I chose.
Three girl scouts helped me get out my five dollar bill. Two others made sure the box of cookies was securely placed on my wheelchair, while the runners went to get me change ("Not fifty cents, a dollar fifty!" I heard them cry out when the youngest runner returned with two quarters). Several girl scouts then put my change in my wheelchair bag. It was a blur of girl scout badges, insignia and patches.
I tell you, it takes a gaggle of girl scouts to sell a box of girl scout cookies to a quad. It takes team work- it took every single girl scout there to make it happen. I never saw such an efficient, lean mean cookie selling team in my life. It renewed my faith in the future of American enterprise. It made me think they should be running homeland security.
A number of friends stopped by yesterday and all of them ate some of the girl scout cookies. "What do you have? Cookies?" they all asked, reaching into the box.
And I could picture the carton sitting on our kitchen counter, open for our friends' hands to grab the cookies.
Things haven't changed that much.
Saturday, January 26, 2008
Friday, January 25, 2008
32,000 stares
One man decided to do something about the fact that people stared at him because of his disability. Born without legs, he grew tired of the gawking. So one day he took a picture of someone staring at him. This led to a trip to capture 32,000 stares. And on that journey he learned some things about staring.
He reports that when people stare, they see different things. In one place he's seen as a beggar, in another a holy man. In Montana, where he attends college, he was seen by one person as a disabled vet. They saw him in the context of their culture, among other things.
Kevin Connolly visited 15 countries in three months shooting photos, using in part a grant and prize money from a disabled ski competition. He has a statement on his site about his conclusions on staring as a response by people and how people make up stories about what they see - and how context plays a role in that. You can see his work at The Rolling Exhibition.
He reports that when people stare, they see different things. In one place he's seen as a beggar, in another a holy man. In Montana, where he attends college, he was seen by one person as a disabled vet. They saw him in the context of their culture, among other things.
Kevin Connolly visited 15 countries in three months shooting photos, using in part a grant and prize money from a disabled ski competition. He has a statement on his site about his conclusions on staring as a response by people and how people make up stories about what they see - and how context plays a role in that. You can see his work at The Rolling Exhibition.
Bluetooth technology being used with prosthetic legs
Two vets who are double amputees are testing them. One Iraq vet, Gregory Gadson, who is an amputee is trying them out. A former linebacker at West Point, he says that he hopes this technology, after testing is completed, can eventually used by many more people. Joshua Bleill, a Marine, is also using the prosthetic legs.
Hulu review: Hands free TV
I'd like to talk about my impressions of the Hulu online TV/movie viewer. Some of you may recall that I signed up for an invitation to Hulu last month and received a reply within a week to ten days. I've been using it for several weeks now.
My overall impression is that Hulu gets an A in many areas. They rate high on customer satisfaction (even though it's currently in beta and free.) Even during the short time I've used it, they keep making changes to content and viewing options that are improvements. There's a place to rate the content and to report any viewing issues on each video and feedback is encouraged. The only negative I see here is that providing feedback could be improved by giving more options in their choices, but you can email them directly.
It also gets an A in overall ease of use. You can view the content in several ways: by browsing clips or full episodes of TV shows/movies or by TV station or film studio. It's possible to see lists of the most popular clips or full episodes and you can create a playlist as you browse. There's also a welcome screen that features new shows, making it easy to keep up with new content.
Moreover, the viewing screen is easy on the eyes. You even have a backlit feature which you can click to "dim the lights". It really takes care of the problem of having so much text on a white page with a viewing screen since it "grays out" all of that and you're left with the very impressive sharp picture Hulu provides in a nice frame. Many viewers comment that this feature is particularly appreciated by seniors, but I think it is at its best in animated features.
Speaking of content, there's a wide range from action/adventures, to drama, to reality shows, to cartoons. And if you can't find anything there you'd like, there are full length movies featured. The content changes over time as episodes are removed or added and more shows are added. There's a mix of retro TV shows like St. Elsewhere and Doogie Howser, to shows that were recently on the air or are still airing. Although some of these are available free on network sites, having Hulu is a convenient way to "one stop shop:" for content.
Now let's get down to the nitty gritty for users with disabilities. I'm using an electronic tracker for cursor control so I can speak to the size of the controls and the ease of use. Not to say I don't have good aim - but let's face it, it's a bit more challenging than using a regular mouse. The screen is surrounded by eight boxes - four on each side- for ratings, dimming the lights, having the screen pop up, and other features. I can access all of these with the assistive equipment. What is a bit more challenging are the controls (pause, stop, etc.) at the bottom of the screen. They work although it sometimes feels like I'm playing a video game as they pop up and then disappear. The good news is that the one feature which was really hard to work ( rating the content with stars) was recently changed and now appears enlarged when you select it. I'd like to see more work done on all of these "boxes" to make them a bit larger for folks with disabilities so our aim doesn't have to be quite as good - but in general, even as it is, one can manage.
On the negative side, there are no captioning features nor do they provide video descriptions of the shows, features that would really make Hulu appealing to the disability community.
One area where Hulu shines is its excellent delivery of content via streaming. I've viewed a few dozen shows and only once experienced any stuttering or interruptions. I reported it but later that evening it happened at a second site so that led me to believe it was caused by my connection, not theirs.
So I give Hulu a good grade overall except for the lack of captioning - and their missed opportunity to provide video descriptions. That would truly make them pioneers of the future!
If you're interested, click here and ask for an invitation.
My overall impression is that Hulu gets an A in many areas. They rate high on customer satisfaction (even though it's currently in beta and free.) Even during the short time I've used it, they keep making changes to content and viewing options that are improvements. There's a place to rate the content and to report any viewing issues on each video and feedback is encouraged. The only negative I see here is that providing feedback could be improved by giving more options in their choices, but you can email them directly.
It also gets an A in overall ease of use. You can view the content in several ways: by browsing clips or full episodes of TV shows/movies or by TV station or film studio. It's possible to see lists of the most popular clips or full episodes and you can create a playlist as you browse. There's also a welcome screen that features new shows, making it easy to keep up with new content.
Moreover, the viewing screen is easy on the eyes. You even have a backlit feature which you can click to "dim the lights". It really takes care of the problem of having so much text on a white page with a viewing screen since it "grays out" all of that and you're left with the very impressive sharp picture Hulu provides in a nice frame. Many viewers comment that this feature is particularly appreciated by seniors, but I think it is at its best in animated features.
Speaking of content, there's a wide range from action/adventures, to drama, to reality shows, to cartoons. And if you can't find anything there you'd like, there are full length movies featured. The content changes over time as episodes are removed or added and more shows are added. There's a mix of retro TV shows like St. Elsewhere and Doogie Howser, to shows that were recently on the air or are still airing. Although some of these are available free on network sites, having Hulu is a convenient way to "one stop shop:" for content.
Now let's get down to the nitty gritty for users with disabilities. I'm using an electronic tracker for cursor control so I can speak to the size of the controls and the ease of use. Not to say I don't have good aim - but let's face it, it's a bit more challenging than using a regular mouse. The screen is surrounded by eight boxes - four on each side- for ratings, dimming the lights, having the screen pop up, and other features. I can access all of these with the assistive equipment. What is a bit more challenging are the controls (pause, stop, etc.) at the bottom of the screen. They work although it sometimes feels like I'm playing a video game as they pop up and then disappear. The good news is that the one feature which was really hard to work ( rating the content with stars) was recently changed and now appears enlarged when you select it. I'd like to see more work done on all of these "boxes" to make them a bit larger for folks with disabilities so our aim doesn't have to be quite as good - but in general, even as it is, one can manage.
On the negative side, there are no captioning features nor do they provide video descriptions of the shows, features that would really make Hulu appealing to the disability community.
One area where Hulu shines is its excellent delivery of content via streaming. I've viewed a few dozen shows and only once experienced any stuttering or interruptions. I reported it but later that evening it happened at a second site so that led me to believe it was caused by my connection, not theirs.
So I give Hulu a good grade overall except for the lack of captioning - and their missed opportunity to provide video descriptions. That would truly make them pioneers of the future!
If you're interested, click here and ask for an invitation.
Thursday, January 24, 2008
30th Disability Blog Carnival is up...
..over at Ryn Tale's Book of Days. The theme is "What professionals should know" . She writes that she got the idea:
So that is where I started. But as you will see there are many more places this sentiment extends too, including fashionista sensibilities about wheelchair design".
So go on over and check it out.
"
... for this carnival in thinking about the sensitivity and understanding or lack of both by medical professionals regarding what a patient’s life is really like. In my experience therapists, doctors, teachers, school psychologists who have shown true empathy, a willingness to listen, and respect for me and for Ellie have, sadly, been in the minority. I wish more professionals would try to educate themselves about the people they are trying to help. So that is where I started. But as you will see there are many more places this sentiment extends too, including fashionista sensibilities about wheelchair design".
So go on over and check it out.
Who's ADA?
I just wrote about meeting Hillary Clinton over at A Different Light. Before I was able to get inside, I was sent around to a few different doors and lines, one of which had a dozen steps. It took over a half hour to get inside in addition to the special transportation arrangements that had to be made. And after the event was over, it took an extra hour for me to leave. This extra time and expense is all part and parcel of the mobility advocacy I talk about that needs working on so all of us can be more mobile, not just those of us with certain mobility devices or equipment - but all of us.
"ADA! ADA!" the guards kept yelling as I was sent from one line to another. One Democratic party worker asked me "Who's ADA?" to which I chuckled.
Who indeed is ADA? And where has he/she gone, leaving her friend in the wheelchair out in the cold? The party worker added "Not much of a friend to leave you here and go inside without you" before I could stop chuckling. I was going to explain they were talking about the Americans with Disabilities Act.
Nah. It was just too precious.
I know ADA. And he's wrong. ADA was right next to me the whole time. She just can't seem to do enough to make things work.
Nursing Home Reform
'In long term care, love matters'.
This seems to be the mantra of a PBS piece about a new kind of nursing home for elder care, that attempts to do away with many of the institutional-like aspects. There are debates about feasibility from financial and other points of view in this article - go ahead and read it and see what you think.
h/t NJCIM
No doubt in my mind that we need to look at nursing home reform and alternatives to institutionalized care.
Another recent news piece about nursing home abuses is here. A night shift nurse was arrested, suspected of sexually abusing over two dozen elderly or disabled nursing home residents while working there. Some of the victims have since died.
Wednesday, January 23, 2008
Inclusion in action
There is a new affiliate at the monastery of St. Scholastica in Minnesota. Her name is Carla Flood and she is legally blind. As an affilidate, Carla will discern her call to religious life over the next six months to a year before seeking admission.
Upon her arrival, Carla was asked to state her intentions and, once those were accepted, she and the rest of the community were led in a procession by the Prioress, Sr. Lois Eckes, to the accompaniment of recorder music to Mid-day prayer.
St. Scholastica is a community of Benedictine monastic women who seek God in response to the Gospel and the Rule of Benedict. They have been "rooted in the city and diocese of Duluth for 125 years". On their website, Sr. Barbara Ann Vierzba, the subprioress, says "I am amazed at how well we share our time, gifts, and talents with one another. I belong to a Benedictine family that participates in prayer, work, and leisure. Everyone is important."
Inclusion makes it possible for communities to open their doors to all who seek to "develop their individual talents and rejoice in the sharing of these gifts through different ministries". That is the message of this story. As Carla, like any other affiliate, prays, discusses and contemplates whether she will decide to permanently join the community at the monastery, I ask all of my readers to pray for the entire community - that already includes this affiliate among them.
Upon her arrival, Carla was asked to state her intentions and, once those were accepted, she and the rest of the community were led in a procession by the Prioress, Sr. Lois Eckes, to the accompaniment of recorder music to Mid-day prayer.
St. Scholastica is a community of Benedictine monastic women who seek God in response to the Gospel and the Rule of Benedict. They have been "rooted in the city and diocese of Duluth for 125 years". On their website, Sr. Barbara Ann Vierzba, the subprioress, says "I am amazed at how well we share our time, gifts, and talents with one another. I belong to a Benedictine family that participates in prayer, work, and leisure. Everyone is important."
Inclusion makes it possible for communities to open their doors to all who seek to "develop their individual talents and rejoice in the sharing of these gifts through different ministries". That is the message of this story. As Carla, like any other affiliate, prays, discusses and contemplates whether she will decide to permanently join the community at the monastery, I ask all of my readers to pray for the entire community - that already includes this affiliate among them.
[visual description: A photo above at left shows Carla standing before Sr. Lois Eckes, the Prioress of the monastery, stating her intentions. Carla holds a cane with a white tip and is dressed in a black suit with a pink blouse. The Prioress wears a robe and carries a black book.
In a photo at right, Carla follows the Prioress in a procession of the community. Behind her the rest of the community follows.]
Tuesday, January 22, 2008
Their misfortune, not hers
Schadenfreude is a German word meaning 'pleasure taken from someone else's misfortune'. There is a form of private derision or public scorn (referred to as 'Hohn'). I suppose that this topic was on my mind as a result of an exchange I had with a friend.
She remarked about how difficult it was for her sometimes to be around other people, because they knew she had mental health issues and they devalued what she said. People question everything she says, she told me, and treat her as if she has no credibility at all. But worse than that, she explained, is the way they do it. They do it in a way where they act superior, as if her version of reality just doesn't matter. And it came across to her in this one group as gloating, to put it simply, like youths on a playing field who beat up the other team and clap each other on the back after they questioned what she said due to her mental health issues. It was humiliating to her.
What's so interesting about this is that the entire thing arises from misunderstanding and ignorance. Her mental health issues don't involve symptoms of hallucinations or altered reality at all - and , quite frankly, even if they did those would be transient states- occasional symptoms at most. Most people on medication with mental health disorders, contrary to popular belief, are quite grounded anad aware of reality. How do I know? I've worked with people and read volumes of documents about their conditions written by experts describing their disorders. I know people with mental health disorders. I'm familiar with my friend's diagnosis and know that the reaction she's getting isn't based on the right information. Most people don't know that 80 to 90% of people who get treatment for mental health disorders can function the way they used to. And what stops them from doing so? Stigma. How do we fight stigma? Through advocacy, public education and contact with those who have mental health issues.
My friend is certainly aware of it when others treat her differently. Her feelings are hurt when she is patronized, her reality is questioned and she's told she's imagining things. Not only does this serve to lower her self esteem and stunt her social opportunities - it goes much further. It dehumanizes her and attempts to turn her from adult status to the role of a child.
Schadenfreude is the German word for only some of the behavior she's describing. It's interesting to read over at Wikipedia the various ways this phrase is used in other countries. It describes a broad range of responses, from what may be called gloating to a sense of retribution. In some places, it can be about "better you than me" or "you deserve that" even if the reason isn't clearly articulated.
No one deserves to be treated in the ways my friend is describing. Yet I've seen this before - and will see it again. It isn't called by this name and some will disagree when I do so, but I think it's time to speak up about these issues honestly. We can call it bullying or we can call it teasing or we can even benignly say kids are like that (or adults are like that in a group, etc.) and the person is being 'thin skinned'.
But what's at the bottom of it is a sickening sense of false superiority described very well by this term, a pleasure taken by right of entitlement at the sake of someone who's perceived as "different". I don't think of disability as misfortune, but they do. The only misfortune going on here is that they fail to see what a wonderful, big hearted, generous person my friend is.
It is everyone's loss and there is nothing, nothing at all to gloat about.
She remarked about how difficult it was for her sometimes to be around other people, because they knew she had mental health issues and they devalued what she said. People question everything she says, she told me, and treat her as if she has no credibility at all. But worse than that, she explained, is the way they do it. They do it in a way where they act superior, as if her version of reality just doesn't matter. And it came across to her in this one group as gloating, to put it simply, like youths on a playing field who beat up the other team and clap each other on the back after they questioned what she said due to her mental health issues. It was humiliating to her.
What's so interesting about this is that the entire thing arises from misunderstanding and ignorance. Her mental health issues don't involve symptoms of hallucinations or altered reality at all - and , quite frankly, even if they did those would be transient states- occasional symptoms at most. Most people on medication with mental health disorders, contrary to popular belief, are quite grounded anad aware of reality. How do I know? I've worked with people and read volumes of documents about their conditions written by experts describing their disorders. I know people with mental health disorders. I'm familiar with my friend's diagnosis and know that the reaction she's getting isn't based on the right information. Most people don't know that 80 to 90% of people who get treatment for mental health disorders can function the way they used to. And what stops them from doing so? Stigma. How do we fight stigma? Through advocacy, public education and contact with those who have mental health issues.
My friend is certainly aware of it when others treat her differently. Her feelings are hurt when she is patronized, her reality is questioned and she's told she's imagining things. Not only does this serve to lower her self esteem and stunt her social opportunities - it goes much further. It dehumanizes her and attempts to turn her from adult status to the role of a child.
Schadenfreude is the German word for only some of the behavior she's describing. It's interesting to read over at Wikipedia the various ways this phrase is used in other countries. It describes a broad range of responses, from what may be called gloating to a sense of retribution. In some places, it can be about "better you than me" or "you deserve that" even if the reason isn't clearly articulated.
No one deserves to be treated in the ways my friend is describing. Yet I've seen this before - and will see it again. It isn't called by this name and some will disagree when I do so, but I think it's time to speak up about these issues honestly. We can call it bullying or we can call it teasing or we can even benignly say kids are like that (or adults are like that in a group, etc.) and the person is being 'thin skinned'.
But what's at the bottom of it is a sickening sense of false superiority described very well by this term, a pleasure taken by right of entitlement at the sake of someone who's perceived as "different". I don't think of disability as misfortune, but they do. The only misfortune going on here is that they fail to see what a wonderful, big hearted, generous person my friend is.
It is everyone's loss and there is nothing, nothing at all to gloat about.
Monday, January 21, 2008
Americans abroad can vote online...
..and some states seek to extend this to voters with disabilities.
Questions Kids Would Ask of Martin Luther King Jr
I've seen a number of articles written about how history and time have oversimplified - and even misrepresented - the legacy of Martin Luther King, Jr. Some note that King's fight to end war and poverty in his latter days - and how that caused him to have detractors- has been left out of the equation. Others say that what is taught to kids is only his "I have a dream" speech, which doesn't do justice to his writings, teachings and - yes - actions.
But you know kids have an innate wisdom. So when they asked one little girl what questions she would ask of Dr. King, the first question she wrote was "Did you think you were a good person?" I sat and stared at that for a bit and found myself stymied.
Would Dr. King, if asked that when alive, say "I've tried to be a good person"? Would he think of his words and how they have given hope to so many - or would he, without the benefit of history, think about his detractors?
None of us have the benefit of history and hindsight to judge our own actions. We can exercise discernment about choices we make and actions we take. Yet sometimes it isn't easy to think of ourselves as being a good person, particularly when we work toward change. It can be discouraging to have detractors, for example, or to feel like a lightning rod. If you stand up for what you believe, there will inevitably be someone who disagrees with the position you take. Many times it's just easier to remain quiet and not utter the words that draw attention.
Not all of us will devote our lives to causes like Martin Luther King Jr. I dare say it's not necessary that we do so. But the world would probably be a better place if more people got off their duffs and went out and did things to change the way things are. In fact, the world would be a better place if more people spoke up from their heart, not worrying as much about detractors.
Perhaps facing the question "Do you think you were a good person?" isn't an easy thing for anyone. No doubt it begins with the process of even defining what goodness and truth is. I don't doubt that Martin Luther King, Jr. was a good person. I can't even imagine the many sacrifices he and his family made over the years, the ultimate one being his life. His legacy will in the light of history be defined and redefined over and over again.
Perhaps those of us who are still alive can best honor him by looking to our own lives and the opportunities we have to be agents of change in the daunting issues that still prevent our society from being fully inclusive, from breaking down the walls and barriers that stand in the way of embracing our brothers and sisters.
But you know kids have an innate wisdom. So when they asked one little girl what questions she would ask of Dr. King, the first question she wrote was "Did you think you were a good person?" I sat and stared at that for a bit and found myself stymied.
Would Dr. King, if asked that when alive, say "I've tried to be a good person"? Would he think of his words and how they have given hope to so many - or would he, without the benefit of history, think about his detractors?
None of us have the benefit of history and hindsight to judge our own actions. We can exercise discernment about choices we make and actions we take. Yet sometimes it isn't easy to think of ourselves as being a good person, particularly when we work toward change. It can be discouraging to have detractors, for example, or to feel like a lightning rod. If you stand up for what you believe, there will inevitably be someone who disagrees with the position you take. Many times it's just easier to remain quiet and not utter the words that draw attention.
Not all of us will devote our lives to causes like Martin Luther King Jr. I dare say it's not necessary that we do so. But the world would probably be a better place if more people got off their duffs and went out and did things to change the way things are. In fact, the world would be a better place if more people spoke up from their heart, not worrying as much about detractors.
Perhaps facing the question "Do you think you were a good person?" isn't an easy thing for anyone. No doubt it begins with the process of even defining what goodness and truth is. I don't doubt that Martin Luther King, Jr. was a good person. I can't even imagine the many sacrifices he and his family made over the years, the ultimate one being his life. His legacy will in the light of history be defined and redefined over and over again.
Perhaps those of us who are still alive can best honor him by looking to our own lives and the opportunities we have to be agents of change in the daunting issues that still prevent our society from being fully inclusive, from breaking down the walls and barriers that stand in the way of embracing our brothers and sisters.
Sunday, January 20, 2008
Dear Waitress/Waiter
[This post was submitted as part of the upcoming disability blog carnival. The next blog carnival will be at Ryn Tales on January 24th. The Theme is "what professionals should know about disability", so I wrote about some things to know when dealing with a customer with a disability.]
I left you this note by my plate because I wanted to tell you a few things before you deal with the next customer with a disability. Consider this a cheat sheet, that you can also share with your colleagues and other service providers.
Things to Know When Dealing with a Customer with a Disability
1. Talk to the person directly, not to the person with him/her. Listen, rather than interrupt, if the person asks for accommodations (such as seating that is comfortable with a mobility device, a place to put his/her mobility device, or having his/her food cut up. Do not try to force a customer to sit in an assigned handicapped area because mobility devices and peoples' needs and wants vary). If you can't solve the issue, please check with management. Keep in mind that these requests are key to the consumer's positive dining experience and should not be treated as frivolous or unreasonable.
2. Don't ask the person intrusive questions such as how he/she became disabled while you're serving them. The person is there to eat, and such questions are not only inappropriate, but detract from the dining experience.
3. Do not touch, push, or otherwise handle the person's assistive or mobility devices without permission, even if you deem them to be "in the way". Most people in wheelchairs consider it a breach of personal space to have their wheelchair touched. Do not pet a guide dog because it distracts the animal from doing his/her job.
4. If your restaurant does not provide Braille menus, do not rush a table where someone is reading the menu to a visually impaired customer. Offer to read the specials and menu to blind customers so they know what to order or, if you can't do this, get a staff member who can.
5. Check back during the meal to see if accommodations have been made or a satisfactory resolution has been reached so that the person can enjoy his/her dining experience. Do not avoid or ignore the situation as if it will go away. Also don't offer your opinion as to whether the request for accommodation is reasonable or try to talk the person out of the request.
6. Be careful where and how you set down plates, particularly hot plates. I've been burned when wait people have put plates half off and on the table, partly because I can't feel temperatures and also because the plate was not on the table, but only perching on it. This is also true of hot beverages. Injury can also result if you say 'Please move' and immediately set a plate down without giving a person with a disability extra time he/she may need to move.
I'm going home now with a take home bag of food so I can eat in peace. My left elbow is burned and my wheelchair was bumped during the meal numerous times because my request to move to a spot where it wouldn't be jutting out wasn't taken seriously, even though spots were available. Moreover I didn't appreciate it when you laughed at me when I asked you to tell the kitchen to cut up my food so I could eat it.
I doubt I'll be back to this restaurant because I like to spend my money where I can have a comfortable and enjoyable dining experience. In that sense and many others, I'm just like other customers who come into this restaurant to eat. Have a nice day.
I left you this note by my plate because I wanted to tell you a few things before you deal with the next customer with a disability. Consider this a cheat sheet, that you can also share with your colleagues and other service providers.
Things to Know When Dealing with a Customer with a Disability
1. Talk to the person directly, not to the person with him/her. Listen, rather than interrupt, if the person asks for accommodations (such as seating that is comfortable with a mobility device, a place to put his/her mobility device, or having his/her food cut up. Do not try to force a customer to sit in an assigned handicapped area because mobility devices and peoples' needs and wants vary). If you can't solve the issue, please check with management. Keep in mind that these requests are key to the consumer's positive dining experience and should not be treated as frivolous or unreasonable.
2. Don't ask the person intrusive questions such as how he/she became disabled while you're serving them. The person is there to eat, and such questions are not only inappropriate, but detract from the dining experience.
3. Do not touch, push, or otherwise handle the person's assistive or mobility devices without permission, even if you deem them to be "in the way". Most people in wheelchairs consider it a breach of personal space to have their wheelchair touched. Do not pet a guide dog because it distracts the animal from doing his/her job.
4. If your restaurant does not provide Braille menus, do not rush a table where someone is reading the menu to a visually impaired customer. Offer to read the specials and menu to blind customers so they know what to order or, if you can't do this, get a staff member who can.
5. Check back during the meal to see if accommodations have been made or a satisfactory resolution has been reached so that the person can enjoy his/her dining experience. Do not avoid or ignore the situation as if it will go away. Also don't offer your opinion as to whether the request for accommodation is reasonable or try to talk the person out of the request.
6. Be careful where and how you set down plates, particularly hot plates. I've been burned when wait people have put plates half off and on the table, partly because I can't feel temperatures and also because the plate was not on the table, but only perching on it. This is also true of hot beverages. Injury can also result if you say 'Please move' and immediately set a plate down without giving a person with a disability extra time he/she may need to move.
I'm going home now with a take home bag of food so I can eat in peace. My left elbow is burned and my wheelchair was bumped during the meal numerous times because my request to move to a spot where it wouldn't be jutting out wasn't taken seriously, even though spots were available. Moreover I didn't appreciate it when you laughed at me when I asked you to tell the kitchen to cut up my food so I could eat it.
I doubt I'll be back to this restaurant because I like to spend my money where I can have a comfortable and enjoyable dining experience. In that sense and many others, I'm just like other customers who come into this restaurant to eat. Have a nice day.
The Skinny
There's a new line of beverages at Starbucks called The Skinny line. Basically without the whipped cream, regular milk, etc. So yesterday a friend and I went to try them out.
We arrived at Starbucks. It was difficult to even get in the door. People, baby carriages and college kids arm in arm kept coming out while we waited for a chance to go inside. We made our way through the cafe, asking folks to move carriages, etc. so the wheelchair could get through. Then we placed our order and went over to a table.
My friend said to me "I think back in the 80's people were more considerate of wheelchairs. I can't believe how people just acted. Stepping over your wheelchair, rushing in front of you to get the first latte that came out-"
I thought about that for a minute. Then I said "Well it is crowded - and what just happened isn't out of the ordinary. Maybe you're more aware of it since you know me."
She thought about that - and wasn't sure. But it was clear to both of us that the idea of access, which has something to do with efforts of builders to create ramps under the ADA, was not the same as access, which has to do with - well - cooperation. And one of the topics that comes up in such a discussion is always - is there a backlash from the ADA? In other words, do people show a resentment toward accommodating people with disabilities because of their perception of the law or its effects?
This evening a friend sent me a link to an article about the consequences of the ADA, among other things. I found this to be an interesting coincidence. It talks about the case of a doctor who is asked by a deaf patient to get a sign language interpreter, the cost involved and the doctor's reaction, as well of that of his medical colleagues. It's quite insightful.
What strikes me is that the article posits that "do-good" laws such as the ADA have been backfiring, affecting employment and "pervasive" doctors' unwillingness to treat certain patients. The author notes that in the medical context it's hard to back that up with any figures or statistics or data, but uses a study saying there was a sharp drop in 1992, the year the ADA was enacted, in employing people with disabilities to prove the theory regarding employment.
It seems to me this is very slim evidence indeed. But in a way that's not the point. The point is how pervasive this kind of reasoning is - how it's okay to openly talk about resenting being legislated to do accommodations while at the same time maintaining we don't need such laws because people will just do the right thing. Or how cumbersome the requirements are - but don't worry, without such a law people would do the right thing.
I agree that you can't legislate attitude or morality. As my ethics professor said on the first day of class, the people who already get it will still get it on the last day of class and as to the others, he'd do his best but could make no assurances. We all chuckled back then but over the years I've thought back to his words often.
People who get it may not need the laws - but what about those who don't? To me, the skinny on this situation is that we need to protect the rights of people with disabilities, and deal with the resentments and objections that come from change. Is the ADA a perfect law? No law is. Has it been used effectively? Many would say no, and there's frustration in the disability community about that. Is it a necessary law? That's where I part company with the authors of this article, because I do think we need legislation to protect the rights of the disabled. And here's why.
As I rolled home from Starbucks, I couldn't help but notice that almost every business has an accessible entrance which wasn't the case a decade ago. I was able to find a bathroom that was accessible. A decade ago I couldn't. And on the way home, I enjoyed the use of the sidewalks and curb cuts, whereas before I was in the street (as some still are).
If it is true that we really don't need "do good" laws at all, then why didn't these changes happen until after the ADA required them?
Yes it is true that such laws may backfire at times. So do other laws. In fact, my ethics professor would be the first to say that some part of enforcing the laws is a human factor, which can unpredictably dictate the interpretation of any law and its course.
Perhaps the better question to ask is not whether we need "do good" laws, since these laws are doing good, but what changes in attitudes and morality do we as a society need to cultivate to enact the changes people with disabilities require to live full and productive lives?
We arrived at Starbucks. It was difficult to even get in the door. People, baby carriages and college kids arm in arm kept coming out while we waited for a chance to go inside. We made our way through the cafe, asking folks to move carriages, etc. so the wheelchair could get through. Then we placed our order and went over to a table.
My friend said to me "I think back in the 80's people were more considerate of wheelchairs. I can't believe how people just acted. Stepping over your wheelchair, rushing in front of you to get the first latte that came out-"
I thought about that for a minute. Then I said "Well it is crowded - and what just happened isn't out of the ordinary. Maybe you're more aware of it since you know me."
She thought about that - and wasn't sure. But it was clear to both of us that the idea of access, which has something to do with efforts of builders to create ramps under the ADA, was not the same as access, which has to do with - well - cooperation. And one of the topics that comes up in such a discussion is always - is there a backlash from the ADA? In other words, do people show a resentment toward accommodating people with disabilities because of their perception of the law or its effects?
This evening a friend sent me a link to an article about the consequences of the ADA, among other things. I found this to be an interesting coincidence. It talks about the case of a doctor who is asked by a deaf patient to get a sign language interpreter, the cost involved and the doctor's reaction, as well of that of his medical colleagues. It's quite insightful.
What strikes me is that the article posits that "do-good" laws such as the ADA have been backfiring, affecting employment and "pervasive" doctors' unwillingness to treat certain patients. The author notes that in the medical context it's hard to back that up with any figures or statistics or data, but uses a study saying there was a sharp drop in 1992, the year the ADA was enacted, in employing people with disabilities to prove the theory regarding employment.
It seems to me this is very slim evidence indeed. But in a way that's not the point. The point is how pervasive this kind of reasoning is - how it's okay to openly talk about resenting being legislated to do accommodations while at the same time maintaining we don't need such laws because people will just do the right thing. Or how cumbersome the requirements are - but don't worry, without such a law people would do the right thing.
I agree that you can't legislate attitude or morality. As my ethics professor said on the first day of class, the people who already get it will still get it on the last day of class and as to the others, he'd do his best but could make no assurances. We all chuckled back then but over the years I've thought back to his words often.
People who get it may not need the laws - but what about those who don't? To me, the skinny on this situation is that we need to protect the rights of people with disabilities, and deal with the resentments and objections that come from change. Is the ADA a perfect law? No law is. Has it been used effectively? Many would say no, and there's frustration in the disability community about that. Is it a necessary law? That's where I part company with the authors of this article, because I do think we need legislation to protect the rights of the disabled. And here's why.
As I rolled home from Starbucks, I couldn't help but notice that almost every business has an accessible entrance which wasn't the case a decade ago. I was able to find a bathroom that was accessible. A decade ago I couldn't. And on the way home, I enjoyed the use of the sidewalks and curb cuts, whereas before I was in the street (as some still are).
If it is true that we really don't need "do good" laws at all, then why didn't these changes happen until after the ADA required them?
Yes it is true that such laws may backfire at times. So do other laws. In fact, my ethics professor would be the first to say that some part of enforcing the laws is a human factor, which can unpredictably dictate the interpretation of any law and its course.
Perhaps the better question to ask is not whether we need "do good" laws, since these laws are doing good, but what changes in attitudes and morality do we as a society need to cultivate to enact the changes people with disabilities require to live full and productive lives?
Saturday, January 19, 2008
Someone left the cake out in the rain
I remember the first time I heard that lyric. I was in my teens and carrying a guitar in a case covered with decals from states ranging from the east coast to Wisconsin from a road trip. My goal was to hit California - which I did.
I played my guitar at college campuses from the east to west coast one summer, traveling via a one way Greyhound bus ticket. I wanted to see the country. I remember deciding that playing guitar at campuses was the best and safest way to add to the money I'd saved, so I'd open the banged up guitar case with the worn red felt interior, strap my guitar on and start performing in a college quad, near the student center or wherever I thought students would congregate and want to hear music.
I played some Segovia and Bach, then some folk songs and eventually put a few blues tunes in. Once in a while I would wait until the crowd thinned out after classes began and just compose rather than perform. Students still wandered by, sat cross legged and listened and tossed money into the battered guitar case.
My guitar had a hole in the base of it. Its name was Oscar. I bought it at the Englishtown flea market and the seller, a grizzly 80 year old with one good tooth left in his lower jaw, told me that it got "banged around" on the delivery truck but it was otherwise new. Except for the hole. He was no guitar player, he said, so he didn't know what that did to the sound. I didn't say a word, just picked the unwanted, rosewood guitar up and began to play. I knew the moment I heard the first notes that I had something special. I paid him thirty dollars for Oscar and he threw in the worn battered case, that was luckily a turtle shell and built for traveling.
So a month later I was at the University of Wisconsin playing when a light rain began to fall. As usual, my guitar case was open, awaiting tips. When the rain picked up, I ducked under a nearby awning and as I huddled there, holding Oscar out of the rain as much as possible, I overheard a student say "Someone left the case out in the rain."
And I smiled, thinking of the other lyrics, the real lyrics. And began to sing them, running out toward the few students standing over the guitar case. We danced and sang "Someone left the cake out in the rain...I don't think that I can take it 'cause it took so long to bake it and I'll never have that recipe again..."
I can still smell the rain from that day, still see the students darting for cover, still feel Oscar's rosewood finish under the tips of my fingers. And, now that I think about it, perhaps leaving things out in the rain as a literal translation isn't a bad thing. Doing things differently can open up a whole new perspective and lead to joy. And maybe put us in a place where we're more open to challenging assumptions.
I played my guitar at college campuses from the east to west coast one summer, traveling via a one way Greyhound bus ticket. I wanted to see the country. I remember deciding that playing guitar at campuses was the best and safest way to add to the money I'd saved, so I'd open the banged up guitar case with the worn red felt interior, strap my guitar on and start performing in a college quad, near the student center or wherever I thought students would congregate and want to hear music.
I played some Segovia and Bach, then some folk songs and eventually put a few blues tunes in. Once in a while I would wait until the crowd thinned out after classes began and just compose rather than perform. Students still wandered by, sat cross legged and listened and tossed money into the battered guitar case.
My guitar had a hole in the base of it. Its name was Oscar. I bought it at the Englishtown flea market and the seller, a grizzly 80 year old with one good tooth left in his lower jaw, told me that it got "banged around" on the delivery truck but it was otherwise new. Except for the hole. He was no guitar player, he said, so he didn't know what that did to the sound. I didn't say a word, just picked the unwanted, rosewood guitar up and began to play. I knew the moment I heard the first notes that I had something special. I paid him thirty dollars for Oscar and he threw in the worn battered case, that was luckily a turtle shell and built for traveling.
So a month later I was at the University of Wisconsin playing when a light rain began to fall. As usual, my guitar case was open, awaiting tips. When the rain picked up, I ducked under a nearby awning and as I huddled there, holding Oscar out of the rain as much as possible, I overheard a student say "Someone left the case out in the rain."
And I smiled, thinking of the other lyrics, the real lyrics. And began to sing them, running out toward the few students standing over the guitar case. We danced and sang "Someone left the cake out in the rain...I don't think that I can take it 'cause it took so long to bake it and I'll never have that recipe again..."
I can still smell the rain from that day, still see the students darting for cover, still feel Oscar's rosewood finish under the tips of my fingers. And, now that I think about it, perhaps leaving things out in the rain as a literal translation isn't a bad thing. Doing things differently can open up a whole new perspective and lead to joy. And maybe put us in a place where we're more open to challenging assumptions.
Friday, January 18, 2008
Rolling
A documentary profiling three very different wheelchair users - one who is a single mom who has MS; another who is a scientist with a spinal cord injury from his youth; and the third, who works in the entertainment industry, who has ALS. The filmmaker, who is a doctor, had participants wear cameras to show the point of view of wheelchair users - and the film contains a great deal of information about the daily lives of the participants.
h/t to Pitt Rehab
h/t to Pitt Rehab
The Angry Young Guy Cries
I have certain names for different grocery delivery people. There is the Smiling Gal, who is the only female delivery person I've had. Then there's the Really Helpful Guy, the Kind Ex Linebacker Guy (who could, I think, lift a horse) and the Angry Young Guy.
So last night in the midst of a snow and sleet event, my grocery order came after 9 p.m. and the person who delivered it was the Angry Young Guy, who was even angrier than usual because of the bad weather. It takes very little to make the Angry Young Guy even angrier - things like my inability to sign my name, much less hold the clipboard or pen he thrusts at me angrily - or my inability to stay "out of his way" in my house because of the wheelchair I use. Everything probably makes the Angry Young Guy angrier, so certainly snow and sleet would do it.
"Rotten weather outside," I said to him.
"Sure is," he snarled, carrying bags of groceries. He dumped them, as usual, in front of the kitchen sink - my only sink- where they can't stay because I need to get at the sink. (You see we removed the bathroom sink so I could transfer onto the toilet and now I have one sink- a fact that doesn't bother me except when it's, uh, blocked.)
"Can you put those over there?" I asked as usual.
Now here's the thing: the Really Helpful Guy, the Smiling Gal and even the Kind Ex Linebacker Guy all remember to do this. The Angry Young Guy , who has been here at least six times, continues to pile the umpteen bags in front of the sink. Sometimes I don't ask him to move them, but last night all my help had gone home and so I dared to utter the Words that Would Bring a Scowl.
He grunted and scowled and moved the bags. After taking care of paperwork, he started out the door.
"Stay safe," I said, seeing the snow falling beyond the door he held open.
He turned and looked at me. "I will. Don't worry about me." Then he paused. "Why are you so nice to me?"
This completely floored me. I suppose I am nice to him even though I think of him as the Angry Young Guy. I shrugged. "Because you remind me of me at your age," I replied.
You see the Angry Young Guy told me one day that he is paying his own way through college and working umpteen jobs. He also told me the truck he drives scared him the first time he came.
So he goes to class, studies and works and that's about all he gets to do. And sometimes, like last night, I see tears well up in his eyes because he's so tired. And scared. And he's very young. Too young, I think, to be doing all of this in such a hard way. Too young to be out in this bitter cold, snow and sleet driving a huge truck and hauling groceries.
Anyway, the Angry Young Guy didn't look very angry when he offered to close the door behind him and lock it. In fact, the Angry Young Guy was crying.
So was I.
{Thank you Jerry for your help in posting this!]
So last night in the midst of a snow and sleet event, my grocery order came after 9 p.m. and the person who delivered it was the Angry Young Guy, who was even angrier than usual because of the bad weather. It takes very little to make the Angry Young Guy even angrier - things like my inability to sign my name, much less hold the clipboard or pen he thrusts at me angrily - or my inability to stay "out of his way" in my house because of the wheelchair I use. Everything probably makes the Angry Young Guy angrier, so certainly snow and sleet would do it.
"Rotten weather outside," I said to him.
"Sure is," he snarled, carrying bags of groceries. He dumped them, as usual, in front of the kitchen sink - my only sink- where they can't stay because I need to get at the sink. (You see we removed the bathroom sink so I could transfer onto the toilet and now I have one sink- a fact that doesn't bother me except when it's, uh, blocked.)
"Can you put those over there?" I asked as usual.
Now here's the thing: the Really Helpful Guy, the Smiling Gal and even the Kind Ex Linebacker Guy all remember to do this. The Angry Young Guy , who has been here at least six times, continues to pile the umpteen bags in front of the sink. Sometimes I don't ask him to move them, but last night all my help had gone home and so I dared to utter the Words that Would Bring a Scowl.
He grunted and scowled and moved the bags. After taking care of paperwork, he started out the door.
"Stay safe," I said, seeing the snow falling beyond the door he held open.
He turned and looked at me. "I will. Don't worry about me." Then he paused. "Why are you so nice to me?"
This completely floored me. I suppose I am nice to him even though I think of him as the Angry Young Guy. I shrugged. "Because you remind me of me at your age," I replied.
You see the Angry Young Guy told me one day that he is paying his own way through college and working umpteen jobs. He also told me the truck he drives scared him the first time he came.
So he goes to class, studies and works and that's about all he gets to do. And sometimes, like last night, I see tears well up in his eyes because he's so tired. And scared. And he's very young. Too young, I think, to be doing all of this in such a hard way. Too young to be out in this bitter cold, snow and sleet driving a huge truck and hauling groceries.
Anyway, the Angry Young Guy didn't look very angry when he offered to close the door behind him and lock it. In fact, the Angry Young Guy was crying.
So was I.
{Thank you Jerry for your help in posting this!]
Thursday, January 17, 2008
Casting Things Asunder
Lately I've had a lot of practice in casting things asunder.
First I had to cast asunder my manual wheelchair, the love of my life, the piece of equipment I most relied upon - an ultralightweight titanium piece of machinery that allowed me mobility by ground and car.
This meant that I cast asunder quite a bit of my mobility. Some would say temporarily, but it hasn't felt that way over the past months (years*). Things I took for granted, like getting in the car and going somewhere (anywhere) no longer happened without someone else's help because the mobility devices I needed no longer fit in a (nonaccessible) car. This left me dependent on others to load a manual chair and push me (costing money if I paid) OR adding to the list of things I need help with. Doesn't happen much.
This meant that I cast asunder most of my social life and plenty of opportunities to participate in organizations, causes, events, etc. Even getting to Mass. Not a small thing for this Catholic.
At some point I cast asunder my willingness to even talk about the entire subject. I wearied of listening to people making suggestions that I already knew I'd tried and wouldn't work and , although well intentioned, this did not increase my mobility one iota.
What did increase my mobility was buying (financing) a very expensive power chair. What did increase my mobility was paying people to take me places or having friends who cared enough to get me out. What did increase my mobility, although not on an earthly level, was spending more time reading. I've made time for that because I need some way to travel.
In the midst of casting asunder all of these things, I suppose the good news is that, underneath, I've found myself again. As often happens when our lives change, I find myself feeling like a different person, with different needs, wants and even a different philosophy.
But I've cast asunder my need to minimize what this has all done to my life and what I've learned it does to the lives of others. I'd appreciate it so much if others would cast aside their need to do that too. I can understand it makes people uncomfortable to listen or to wrap their brains around the idea that the lack of mobility can be one equipment change away.
As I watch the candidates debate, I don't hear anyone talking about solutions to this issue. I sit here staring at my ballot, trying to discern who should get my vote. And I must say it's difficult right now to believe that any of those candidates know one iota of what I do on this issue. They may "feel my pain" at a town hall meeting or say they will work toward change (so the signs say), but do they? Will they?
Perhaps in order to vote I have to cast asunder these doubts. I have to remember that such things like lack of mobility are not solved in four years or maybe even eight years. Right now these issues are solved on a person to person basis, through grants and fund raising, hard work, extra hours, and exhaustion. It has little if anything to do with politics or government from what I can see, and more to do with trying to wrest a miracle out of it all, a miracle of grace and happenstance.
One thing I have not cast asunder is my faith. I still believe there is a solution for me and for many others. Where that will come from remains up in the air. I can only pray that someone will listen. One thing I won't cast asunder is hope.
(*Please note the words/descriptions in the parentheses are my own addition.)
Thanks again to Barbara so I could get this post up despite my computer issues.
First I had to cast asunder my manual wheelchair, the love of my life, the piece of equipment I most relied upon - an ultralightweight titanium piece of machinery that allowed me mobility by ground and car.
This meant that I cast asunder quite a bit of my mobility. Some would say temporarily, but it hasn't felt that way over the past months (years*). Things I took for granted, like getting in the car and going somewhere (anywhere) no longer happened without someone else's help because the mobility devices I needed no longer fit in a (nonaccessible) car. This left me dependent on others to load a manual chair and push me (costing money if I paid) OR adding to the list of things I need help with. Doesn't happen much.
This meant that I cast asunder most of my social life and plenty of opportunities to participate in organizations, causes, events, etc. Even getting to Mass. Not a small thing for this Catholic.
At some point I cast asunder my willingness to even talk about the entire subject. I wearied of listening to people making suggestions that I already knew I'd tried and wouldn't work and , although well intentioned, this did not increase my mobility one iota.
What did increase my mobility was buying (financing) a very expensive power chair. What did increase my mobility was paying people to take me places or having friends who cared enough to get me out. What did increase my mobility, although not on an earthly level, was spending more time reading. I've made time for that because I need some way to travel.
In the midst of casting asunder all of these things, I suppose the good news is that, underneath, I've found myself again. As often happens when our lives change, I find myself feeling like a different person, with different needs, wants and even a different philosophy.
But I've cast asunder my need to minimize what this has all done to my life and what I've learned it does to the lives of others. I'd appreciate it so much if others would cast aside their need to do that too. I can understand it makes people uncomfortable to listen or to wrap their brains around the idea that the lack of mobility can be one equipment change away.
As I watch the candidates debate, I don't hear anyone talking about solutions to this issue. I sit here staring at my ballot, trying to discern who should get my vote. And I must say it's difficult right now to believe that any of those candidates know one iota of what I do on this issue. They may "feel my pain" at a town hall meeting or say they will work toward change (so the signs say), but do they? Will they?
Perhaps in order to vote I have to cast asunder these doubts. I have to remember that such things like lack of mobility are not solved in four years or maybe even eight years. Right now these issues are solved on a person to person basis, through grants and fund raising, hard work, extra hours, and exhaustion. It has little if anything to do with politics or government from what I can see, and more to do with trying to wrest a miracle out of it all, a miracle of grace and happenstance.
One thing I have not cast asunder is my faith. I still believe there is a solution for me and for many others. Where that will come from remains up in the air. I can only pray that someone will listen. One thing I won't cast asunder is hope.
(*Please note the words/descriptions in the parentheses are my own addition.)
Thanks again to Barbara so I could get this post up despite my computer issues.
Wednesday, January 16, 2008
Linkin'
Failing the Disabled (Part 2 of series about SSI over at cbs.com)
Criticizing Dutch practice of committing euthanasia on babies with spina bifida
Criticizing Dutch practice of committing euthanasia on babies with spina bifida
If Steve Jobs' team was in charge of designing wheelchairs...
After seeing the ads yesterday for the introduction of the new Macbook Air, I couldn't help but think what could happen if that kind of effort went into wheelchair design. (We might even get a power chair out of the mix that is more rain resistant, huh? Okay so I'm being completely unreasonable wanting that...NOT).
Just imagine an ad campaign:
The lightest wheelchair - the Wheelchair Air! Designed with the consumer in mind, it not only has wireless ability to download GPS, entertainment and research off the internet, you can also remotely download repairs and upgrades from another PC/Mac. This wheelchair saves valuable inches in the width so you can fit more easily in restrooms wherever you travel and traverse those aisles with ease. It has a built in (not optional) shock system to help prevent spasms and a rough ride because it's metallic design needs to coexist with the smoothest ride possible. Not only does the new Wheelchair Air come in a manual version, but there's an optional joystick/power accessory that you can add. This accessory will only cost an additional four hundred dollars, making this wheelchair an affordable and futuristic choice for power chair users who want the design of a manual chair but need the power features. Every part of the power system has been coated to be water resistant, reducing the user's need in current chairs to protect these features from rain and snow and increases the user's freedom. We call this product optimization for the user's needs, making the product work for the user, not the user work for the product.
Along these lines, the tires on the new Wheelchair Air represent the latest puncture proof technology while providing a comfortable ride. You'll feel like you're riding on air - but you don't need to worry about tire pressure because one wireless remote download every week instantly upgrades every feature on this chair, while simultaneously alerting you to any loose parts and making repairs that you need, reducing the need to waste time dealing with repair visits and loss of the use of your wheelchair.
The Wheelchair Air. Because wheelchairs should be given as much attention as cool gadgets. Don't you think?
(thanks to Barb for her assistance in putting up this post!)
Just imagine an ad campaign:
The lightest wheelchair - the Wheelchair Air! Designed with the consumer in mind, it not only has wireless ability to download GPS, entertainment and research off the internet, you can also remotely download repairs and upgrades from another PC/Mac. This wheelchair saves valuable inches in the width so you can fit more easily in restrooms wherever you travel and traverse those aisles with ease. It has a built in (not optional) shock system to help prevent spasms and a rough ride because it's metallic design needs to coexist with the smoothest ride possible. Not only does the new Wheelchair Air come in a manual version, but there's an optional joystick/power accessory that you can add. This accessory will only cost an additional four hundred dollars, making this wheelchair an affordable and futuristic choice for power chair users who want the design of a manual chair but need the power features. Every part of the power system has been coated to be water resistant, reducing the user's need in current chairs to protect these features from rain and snow and increases the user's freedom. We call this product optimization for the user's needs, making the product work for the user, not the user work for the product.
Along these lines, the tires on the new Wheelchair Air represent the latest puncture proof technology while providing a comfortable ride. You'll feel like you're riding on air - but you don't need to worry about tire pressure because one wireless remote download every week instantly upgrades every feature on this chair, while simultaneously alerting you to any loose parts and making repairs that you need, reducing the need to waste time dealing with repair visits and loss of the use of your wheelchair.
The Wheelchair Air. Because wheelchairs should be given as much attention as cool gadgets. Don't you think?
(thanks to Barb for her assistance in putting up this post!)
LOV and thinking snow!
I was able to go out to dinner with some friends from Ski for Light on Sunday which was wonderful. This is the week of the annual Ski for Light trip and I wasn't able to attend this year so I truly appreciated seeing some of the folks and spending an evening with them. The trip is held up at Land of the Vikings (or as we call it LOV) . There's only one accessible room there which is called "Thor" (all of the rooms have Viking names). I remember the first year I went up that I was a bit intimidated that I was in Thor's room.
Anyhow I'm "thinking snow" for everyone up there so the trails and fields are nicely covered and those little "bumps" turn into hills! LOV you guys.
[visual description: An illustration of a Viking is shown. He wears a helmet and carries a shield and an axe.]
Monday, January 14, 2008
reading and riding
The Star Market is a poem in the New Yorker creating some interesting discussion. It was written by a poet with a disability.
h/t SDS list serv
Discovered this weekend that all the curb cuts were fixed and brought into compliance on a local street due to everyone working together - ahhh so nice when that happens! Far better to light a candle than curse the darkness. And light one also for Brent Martin that he may rest in peace.
Saturday, January 12, 2008
HULU and blogging business
For those interested, got the HULU invite.
I just want to get several pieces of blogging business out of the way. Writing this blog (in general) has been a wonderful experience and I want to continue doing it, but there are changes I have to make. One is comments. I had to add comment moderation due to spamming, etc. However it's hard for me to moderate comments -physically - so I've reluctantly decided to take comments off the blog. It's unfortunate that I can't just leave comments up unmoderated but there's so much spam that gets through that it wouldn't be a pleasant reading experience for anyone - and with the subject matter of this blog, I do have to consider appropriateness.
[I've amended this post - due to some friends' help, I've been able to continue posting despite computer issues. Thank you all!]
I just want to get several pieces of blogging business out of the way. Writing this blog (in general) has been a wonderful experience and I want to continue doing it, but there are changes I have to make. One is comments. I had to add comment moderation due to spamming, etc. However it's hard for me to moderate comments -physically - so I've reluctantly decided to take comments off the blog. It's unfortunate that I can't just leave comments up unmoderated but there's so much spam that gets through that it wouldn't be a pleasant reading experience for anyone - and with the subject matter of this blog, I do have to consider appropriateness.
[I've amended this post - due to some friends' help, I've been able to continue posting despite computer issues. Thank you all!]
Friday, January 11, 2008
Sunday, January 6, 2008
The Prince Who Did Not Wish To Be King
Don't forget to visit the next Disability Carnival to be posted January 10 at [with]tv blog. The subject is Disability & the Media.
Over at A Different Light-
a new fable The Prince Who Did Not Wish to Be King
and a new short story Down by the Tracks
Over at A Different Light-
a new fable The Prince Who Did Not Wish to Be King
and a new short story Down by the Tracks
The "Other" Healing Sacrament
I received an email from a reader who said that when I mentioned the healing sacraments, I forgot to mention the "other" one, which is Reconciliation (formerly known as Penance.) Reconciliation is the sacrament we use to celebrate God's forgiveness of our sins and His infinite mercy.
I found a site by Fr. Patrick Unser that is a wonderful resource on Reconciliation. He wrote out exactly what to expect when receiving the sacrament, both in its private and communal forms and even includes a "cheat sheet" with the prayers you say.
There are some Catholics who either fear or avoid this sacrament. As a cradle Catholic, I remember being marched up to the church once a week to "say our Confession". A week may not seem like a long time in between confessing sins, but to our chagrin, if we claimed we didn't have any, our teachers would remind us of a few choice moments in the last week! This kept us honest.
In those days, the sacrament was a bit different, but the idea is the same. It's an opportunity to clean the slate (and it's emphasized to confess all your sins for that reason) but also to experience the infinite mercy that God has. Whenever I have this sacrament I always feel a sense of relief and a chance to make a new start. It's very healing.
I remember that Fr. O'Connor, who was our pastor in my youth, used to say to the children at the end of confession, after he gave us a penance (usually Hail Marys to say) the simple words "God loves you " and would insert our individual name. It was wonderful to hear that right after confessing something that was difficult to say.
So, dear reader, there you have it. The "Other" healing sacrament deserves a better rap.
I found a site by Fr. Patrick Unser that is a wonderful resource on Reconciliation. He wrote out exactly what to expect when receiving the sacrament, both in its private and communal forms and even includes a "cheat sheet" with the prayers you say.
There are some Catholics who either fear or avoid this sacrament. As a cradle Catholic, I remember being marched up to the church once a week to "say our Confession". A week may not seem like a long time in between confessing sins, but to our chagrin, if we claimed we didn't have any, our teachers would remind us of a few choice moments in the last week! This kept us honest.
In those days, the sacrament was a bit different, but the idea is the same. It's an opportunity to clean the slate (and it's emphasized to confess all your sins for that reason) but also to experience the infinite mercy that God has. Whenever I have this sacrament I always feel a sense of relief and a chance to make a new start. It's very healing.
I remember that Fr. O'Connor, who was our pastor in my youth, used to say to the children at the end of confession, after he gave us a penance (usually Hail Marys to say) the simple words "God loves you " and would insert our individual name. It was wonderful to hear that right after confessing something that was difficult to say.
So, dear reader, there you have it. The "Other" healing sacrament deserves a better rap.
The Article That Never Was
I have a confession to make. I pretended to be a wheelchair jock for a decade. And because reporters were so busy writing inspirational stories about me, I never got found out.
Part of playing wheelchair tennis was giving interviews to newspaper reporters. Sometimes my coach arranged them because we needed funding. Other times they were part of an event I was playing at or competing in.
It always went the same. I sat by the side of the tennis net, trying to tighten the duct tape around my tennis racket to my arm with my teeth while a person standing outside the fence surrounding the court waved at me and yelled "Hi! I'm the reporter from ---".
I remember shrugging and perhaps even sighing. My experiences with reporters who interviewed me about wheelchair tennis usually went something like this: they would ask questions such as how I wound up in a wheelchair and what my disability was. Then they would watch me play for a while, take a few pictures and leave. Nine out of ten times none of them asked me anything else. It was as if they were filling out a form entitled : inspirational wheelchair athlete article.
At first I was naive and went along with this. But then I caught on, after reading a few of the articles that were written that were so formulaic. I decided that I'd try to insert some real information about who I was into the interviews. Mostly it seemed to confound and dismay the reporters. If my coach was around, she would go along with it and it became like a comedy routine. Afterwards I'd always ask "Think they 'll use any of it?" to which my coach would reply "Probably not, but we tried."
There was no way, it seemed, to get across the real story which was that I played wheelchair tennis as a weekend warrior, competing at tournaments during the spring and summer for short two or three day trips, while working. The reporters didn't want to hear about my other life - the real job I had and all the other things I did with my life.
Such mundane facts seemed to put them on overload. One reporter put his pen behind his ear and just stopped writing. Another held up her hand and asked "Do you all play tennis or do you have a job? Which is it?" as if I couldn't do both. The resistance to any real facts or information was pretty strong.
Somehow no reporter ever managed to write a story about who I was over the decade I gave interviews. I guess that story just wasn't inspirational enough.
You see, I'm not really a wheelchair jock. I practically flunked gym in school. The only reason I have a wall of trophies for wheelchair tennis is because after my hands were paralyzed and I couldn't play classical guitar any more I got so mad I duct taped a racket on and started hitting tennis balls around one day. A coach saw me. He mistook my anger for athletic aspiration and set me up with lessons. And the next thing I knew I found myself competing in a tennis tournament.
That's the real story.
Oh, except for one thing. I managed to win a cross country skiing event too one year. How did that happen?
Don't even ask .But there is an article about it somewhere. And you can bet it was very inspirational.
Part of playing wheelchair tennis was giving interviews to newspaper reporters. Sometimes my coach arranged them because we needed funding. Other times they were part of an event I was playing at or competing in.
It always went the same. I sat by the side of the tennis net, trying to tighten the duct tape around my tennis racket to my arm with my teeth while a person standing outside the fence surrounding the court waved at me and yelled "Hi! I'm the reporter from ---".
I remember shrugging and perhaps even sighing. My experiences with reporters who interviewed me about wheelchair tennis usually went something like this: they would ask questions such as how I wound up in a wheelchair and what my disability was. Then they would watch me play for a while, take a few pictures and leave. Nine out of ten times none of them asked me anything else. It was as if they were filling out a form entitled : inspirational wheelchair athlete article.
At first I was naive and went along with this. But then I caught on, after reading a few of the articles that were written that were so formulaic. I decided that I'd try to insert some real information about who I was into the interviews. Mostly it seemed to confound and dismay the reporters. If my coach was around, she would go along with it and it became like a comedy routine. Afterwards I'd always ask "Think they 'll use any of it?" to which my coach would reply "Probably not, but we tried."
There was no way, it seemed, to get across the real story which was that I played wheelchair tennis as a weekend warrior, competing at tournaments during the spring and summer for short two or three day trips, while working. The reporters didn't want to hear about my other life - the real job I had and all the other things I did with my life.
Such mundane facts seemed to put them on overload. One reporter put his pen behind his ear and just stopped writing. Another held up her hand and asked "Do you all play tennis or do you have a job? Which is it?" as if I couldn't do both. The resistance to any real facts or information was pretty strong.
Somehow no reporter ever managed to write a story about who I was over the decade I gave interviews. I guess that story just wasn't inspirational enough.
You see, I'm not really a wheelchair jock. I practically flunked gym in school. The only reason I have a wall of trophies for wheelchair tennis is because after my hands were paralyzed and I couldn't play classical guitar any more I got so mad I duct taped a racket on and started hitting tennis balls around one day. A coach saw me. He mistook my anger for athletic aspiration and set me up with lessons. And the next thing I knew I found myself competing in a tennis tournament.
That's the real story.
Oh, except for one thing. I managed to win a cross country skiing event too one year. How did that happen?
Don't even ask .But there is an article about it somewhere. And you can bet it was very inspirational.
Saturday, January 5, 2008
Swimming with Scapulars read on Catholic radio show
The book Swimming with Scapulars will be read on Cover to Cover, a Catholic radio show starting January 7. Installments will be available Mondays, Wednesday and Fridays.
The book Left to Tell, about a survivor of the Rwandan holocaust, was just completed and is available as well on their site.
h/t to Catholic Media Review ( a new blog well worth a visit!)
The book Left to Tell, about a survivor of the Rwandan holocaust, was just completed and is available as well on their site.
h/t to Catholic Media Review ( a new blog well worth a visit!)
Hands free TV
I've been looking around for ways to watch TV on a computer for free. It's much easier for me to work a computer than a TV. The other day I found Hulu, a beta site that is issuing invitations for people (U.S. only) to watch full length TV programs. There are limited commercial interruptions during the shows.
Here's how it works: you email them to be put on a list to get an invitation. The wait seems to vary. Right now I don't have much time to watch anyhow, but will let you know how long it takes for me to get an invite.
Here's how it works: you email them to be put on a list to get an invitation. The wait seems to vary. Right now I don't have much time to watch anyhow, but will let you know how long it takes for me to get an invite.
Jay Leno disses Amtrak for charging wheelchair users more
I'm a Jay Leno fan - and am glad to see his show back on the air.
Tonight he won my heart again when he spoke about Amtrak's policy where they've charged wheelchair users more to ride on their trains and how it is wrong. [Amtrak won a lawsuit against a disability group in 2005 where the judge ruled that Amtrak only had to provide one accessible spot for a wheelchair and one spot to store a chair and can charge passengers more when they have to provide additional spaces for wheelchair users. The lawsuit occurred after Amtrak charged some members of the group 200 dollars in addition to the regular ticket price of 90 dollars to travel together and the group sued Amtrak. ]
Go Jay. I wish more people would speak up about issues like this, that are so blatantly wrong.
[visual description: A photo of Jay Leno, who is smiling, is shown. Actually I think he's smirking. He's wearing a dark suit and a tie.]
Friday, January 4, 2008
Prayed Upon
Meredith has written a post about something those of us with disabilities have experienced: when people tell us they will pray for us - or when some Christians seem to think we haven't prayed enough ourselves or we would be - well - cured. She addresses spiritual versus physical healing as well as practical suggestions. As a trained hospice worker and PA, she's only just beginning to write about her experiences in those professions- with my blessing.
Have I been prayed upon? I have, although not by Catholics. I consider it inappropriate and intrusive for anyone to lay hands on me to heal me or to question my faith because I am "still disabled". Please!
Our Church has a sacrament to address healing and Catholic priests have been very respectful about administering that sacrament - by request only. And no clergy member has ever said anything implying that I would be healed if I was a better Catholic.
One of my friends has been so scarred emotionally by being prayed over that she wouldn't even go into a bible bookstore when we were on a trip together. The mere sight of the crosses and bibles brought back bad memories of being "prayed over for a cure" as a child. And I think that's the result of the dangerous intersection of religion and ableism.
Have I been prayed upon? I have, although not by Catholics. I consider it inappropriate and intrusive for anyone to lay hands on me to heal me or to question my faith because I am "still disabled". Please!
Our Church has a sacrament to address healing and Catholic priests have been very respectful about administering that sacrament - by request only. And no clergy member has ever said anything implying that I would be healed if I was a better Catholic.
One of my friends has been so scarred emotionally by being prayed over that she wouldn't even go into a bible bookstore when we were on a trip together. The mere sight of the crosses and bibles brought back bad memories of being "prayed over for a cure" as a child. And I think that's the result of the dangerous intersection of religion and ableism.
Room for Reflection
This post is not a reflection. It's a post where I'm going to put links to great posts at other blogs.
As I read around the blogosphere, I see a number of people writing end of the year posts. I've decided not to do a post where I sum up 2007.
I would like to say that I've had a lot of room for reflection this past year.
I didn't learn anything from what happened with my mobility issues.
I do know there are broader societal issues involved, so I suppose some would say I shouldn't take what happened personally. And maybe, after having room for reflection, I might even agree with them that it would be best if I don't take 2007 personally.
I suppose, in the end, this is why, despite all the room for reflection I have had, there's not much to write about.
No, I won't be doing a post about 2007. There simply isn't anything to say.
However Wheelchair Dancer has written in this post about our right to passage and talks about mobility advocacy. And that's the direction I think we need to go in.
And Elizabeth has written a post about wheelchairs over at BBC Ouch that addresses some of the misperceptions about mobility devices.
As I read around the blogosphere, I see a number of people writing end of the year posts. I've decided not to do a post where I sum up 2007.
I would like to say that I've had a lot of room for reflection this past year.
I didn't learn anything from what happened with my mobility issues.
I do know there are broader societal issues involved, so I suppose some would say I shouldn't take what happened personally. And maybe, after having room for reflection, I might even agree with them that it would be best if I don't take 2007 personally.
I suppose, in the end, this is why, despite all the room for reflection I have had, there's not much to write about.
No, I won't be doing a post about 2007. There simply isn't anything to say.
However Wheelchair Dancer has written in this post about our right to passage and talks about mobility advocacy. And that's the direction I think we need to go in.
And Elizabeth has written a post about wheelchairs over at BBC Ouch that addresses some of the misperceptions about mobility devices.
Thursday, January 3, 2008
Wearing disability: addressing ignorance about disabilities
I found these wheelchair dangling earrings on ebay. At first I thought I was looking at my parking placard, with the wheelchair stick figure logo cut out. And I thought - how convenient! Much easier to wear these than bring along a placard. It certainly opens up ideas about ways to "wear disability".
People "wear disability" differently. Some people have invisible disabilities and this creates its own issues and dilemnas because there's still a lot of ignorance about invisible disabilities - and a lot of misconceptions, better addressed by someone with an invisible disability.
But I know that if someone sees me coming at them in a power chair, people "know" I'm disabled. They may not be able to guess what my disability is, but they can guess I have a mobility impairment. When they see my paralyzed hands, they realize that it is more than my legs that are paralyzed. That's the point when some people experience a recoil reaction and pull away from me or turn their heads. (I've been told it's very difficult for them, but we have to be careful in areas like this - and I'd like to try to explain why I think this is so.)
Although there's not a lot I can do about how my disability "looks", I can choose how to adapt to the environment around me and the positive, empowering choices I make may get lost on someone who remains "stuck" at a recoil reaction level. That's their choice and there isn't much I can do about it since even discussing this topic sometimes elicits a response that recoil is to be expected, understood, etc. or at the other extreme I'm told I'm imagining the recoil, as if I haven't 'adjusted' to my disability. Perhaps we could at least work toward taking "blame" out of the equation so discussion isn't silenced on the topic.
But having an invisible disability is no picnic because it requires dealing with the attitude of "if you can't see it" it's not a disability. That's absolutely ridiculous but it's still a belief that people act upon, if you consider the reactions some of my friends get. When they try to get accommodations for their invisible disability, they are questioned as if they are imagining /exaggerating their disability. Because no one can see their disability, they face grilling which on some days resembles an inquisition.
So this issue of wearing disability is not some frivolous thing. Maybe they should sell jewelry like this with the logo "The person next to you might have a disability" or "Some disabilities can't be seen" to raise awareness of invisible disabilities. Because those with invisible disabilities shouldn't have to battle just to be accepted as people with disabilities in either the disability community - or the community at large.
As for me, I don't need earrings for anyone to see my disability. But perhaps the Beast (my powerchair) might like to have a few earrings dangling off the back. After all, I just took off the red holiday bows.
[For my visually impaired readers, the logo of the wheelchair that is used on many signs, an outline in blue of a stick figure in white in a wheelchair, is on the earrings. The logo is round].
Wednesday, January 2, 2008
Infinity - and beyond
I've been told I'm a dreamer. I think that's it's more accurate to say I'm a believer.
Having faith definitely affects my perspective on life. When I think of the word infinity, I'm not necessarily grappling with a mathematical concept, or a physics definition, or even an Escher painting. I don't refer to it as some religious concept people struggle with.
That's because I believe in it. Man may be mortal, our mortal bodies are temporal, but I believe all of us are also spiritual beings. And it's those spiritual beliefs that zoom me into infinity and beyond.
Of course because I'm dealing day to day with my temporal life, I think of things in those terms. But the fact that I believe in infinity affects the way I live the hours and minutes of my day. Knowing that God's love is infinite is humbling, but it also helps me muster up more patience (sometimes) with my fellow man. Realizing that infinity exists reminds me that I am mortal and helps me put this life into perspective. It also guides me as to what work I wish to do and how to spend my time.
To me, any talents I may have, any assets I may own, and even the time I have are things I hold in stewardship for God. I am accountable for how I use or spend them. Not just taking into account what may be easier now or may make me more successful or powerful now, but in terms of what God's will is, taking into account - well - a perspective that embraces and acknowledges infinity and the infinite.
So as I start a new year, I'm not necessarily thinking about just the year 2008. I don't have a day planner, a monthly planner or an annual planner - I have an infinity planner. And that perspective is one that I can't totally embrace, except by allowing God's will to work in my life.
Which is just fine with me, since therein lies the joy.
Tuesday, January 1, 2008
Talking to kids about a parent's illness
This past weekend, when my brother in law had a heart attack, I was greatly concerned about my nephews. One is 17 and the other, who is 11, has several disabilities which make coping more difficult. Although there are articles written about how to talk to children about a parent's illness, the important thing I found is to communicate in a way where children and teens are told the information as they can handle it at an age appropriate level while being reassured that their day to day needs will be taken care of. As this cartoon emphasizes, it's important to remember that children and teens may put very different meaning to the words you say. Taking the time to make sure that they haven't misunderstood what was said is important. Some children, depending on their ages, will blame themselves for their parents' illnesses. Others will be concerned about issues you might not even think about. My youngest nephew expressed the most concern to me that his father had to stay in the hospital, away from home for a number of nights, because "the hospital is scary". Because of the number of medical tests my nephew has had during his short life, his father's hospitalization triggered his anxieties. Explaining that his father would be taken well care of by the nurses and doctors seemed to help lower his anxiety level.
[visual description: In the first box of a cartoon, in front of a castle, a cartoon figure says "Raphunzel, sweet Raphunzel, let down your hair". In the second box, a giant rabbit hare is dropped and lands on the cartoon character.]
Childhood obesity and advertising
In the UK, a ban on ads for junk foods during programs where the majority of viewers are under 16 has been imposed to address childhood obesity. The ban seeks to address the issue, among others, of encouraging excessive consumption of food.
In the US, schools have instituted healthier choices in cafeterias. Some have removed vending machines that contain high sugar sodas and candies or chips and other junk foods, imposing junk food bans with legislation begun in California. The statistics show that childhood obesity has more than doubled in our country for preschoolers and more than tripled for children aged 6 to 11.
The UK has similar bans in their schools, but limiting ads during children's programs is a step further than we've taken. It's reminiscent of the cigarette commercials that were removed from television. The ban took place on January 2, 1971. Why? To allow the cigarette companies one last time to advertise on New Year's Day.
What do you think? Is it appropriate to police junk food ads for a young audience? Or not? To see what's being done in the U.S., visit the FCC site for the Task Force for Media and Childhood Obesity. Back in June, food firms were urged to follow the socially responsible lead of Kellogg's company.
Subscribe to:
Posts (Atom)