CONVERSATIONS ABOUT INTER-ABLED ROMANCE, part 5
11 years ago
Wednesday, April 10, 2013
Sunday, November 13, 2011
Playdates
Playdates have always been hard. Think about it. How long do you suppose a 4-year-old's attention span is? 10 minutes? 5? Less? Yep, probably less. How about a 3-year-old? A kid who has seen just 24 cycles of the moon?
Historically, on a playdate, my boy and his "friend" may engage in parallel play, or even actual play with each other for a moment...then the attention span wanes (at least for the buddy) and off one of them goes...fast and probably down or up some stairs. Good luck with that, little boy who can't walk. Time to play alone again.
No malice or rudeness was ever involved. The 4- or 3- or 2-year old was just being a 2- or 3- or 4-year old. But, it sucked. It really, really, really sucked...for me that is. My boy didn't seem to really care. He's always been perfectly happy playing on his own.
Preschool recess was the same deal. It's impossible to count how many tiny pieces my heart disintegrated into when my boy told me "they don't want to play with me" when describing his classmates on the playground. Pure rage and abject sadness are apparently complimentary feelings.
It didn't help that my boy adopted a detached attitude about it all. He made no real effort to initiate play or change the status quo. He just played by himself. Frustrating for a father who wants his kid to be the center of everyone's universe (not just my own).
And, it created a chicken and egg problem. Were there no playmates who engaged with him for more than a few minutes because he acted like he just didn't care, or did he retreat into himself as a defense mechanism because he quickly learned that able-bodied kids his age would leave him behind? And, I harkened back to me at that age. I could (and did) play for hours on end alone up in my room with GI Joes, Star Wars toys, or superheroes. I was perfectly content.
Ah, the confusion and competing feelings emerge. As in much of this journey, it is hard to figure out what part of any action, attitude, or personality trait is due to the physical condition and which is just who the kid is.
So where are we now? As readers know from my last post, Kindergarten is going swimingly. But what of recess? What of playdates? Well, my boy's teacher reports that he's in surprisingly great shape at recess because there is a cadre of kids who want to play with him. That's pretty great. Still, my boy acts pretty nonplussed...even uninterested at times...but he is warming up to the attention.
But what of playdates you ask (remembering the title of this post)? Promising I reply, at least based on two very recent playdates with his best friend from Kindergarten. Hours of playing together, talking together, being friends together. That's pretty awesome.
I still don't know if all this fretting about playdates is really an issue for my boy, or just me projecting my worries and frustrations on him. Probably a fair mix of both and only time will tell how it will shake down.
Historically, on a playdate, my boy and his "friend" may engage in parallel play, or even actual play with each other for a moment...then the attention span wanes (at least for the buddy) and off one of them goes...fast and probably down or up some stairs. Good luck with that, little boy who can't walk. Time to play alone again.
No malice or rudeness was ever involved. The 4- or 3- or 2-year old was just being a 2- or 3- or 4-year old. But, it sucked. It really, really, really sucked...for me that is. My boy didn't seem to really care. He's always been perfectly happy playing on his own.
Preschool recess was the same deal. It's impossible to count how many tiny pieces my heart disintegrated into when my boy told me "they don't want to play with me" when describing his classmates on the playground. Pure rage and abject sadness are apparently complimentary feelings.
It didn't help that my boy adopted a detached attitude about it all. He made no real effort to initiate play or change the status quo. He just played by himself. Frustrating for a father who wants his kid to be the center of everyone's universe (not just my own).
And, it created a chicken and egg problem. Were there no playmates who engaged with him for more than a few minutes because he acted like he just didn't care, or did he retreat into himself as a defense mechanism because he quickly learned that able-bodied kids his age would leave him behind? And, I harkened back to me at that age. I could (and did) play for hours on end alone up in my room with GI Joes, Star Wars toys, or superheroes. I was perfectly content.
Ah, the confusion and competing feelings emerge. As in much of this journey, it is hard to figure out what part of any action, attitude, or personality trait is due to the physical condition and which is just who the kid is.
So where are we now? As readers know from my last post, Kindergarten is going swimingly. But what of recess? What of playdates? Well, my boy's teacher reports that he's in surprisingly great shape at recess because there is a cadre of kids who want to play with him. That's pretty great. Still, my boy acts pretty nonplussed...even uninterested at times...but he is warming up to the attention.
But what of playdates you ask (remembering the title of this post)? Promising I reply, at least based on two very recent playdates with his best friend from Kindergarten. Hours of playing together, talking together, being friends together. That's pretty awesome.
I still don't know if all this fretting about playdates is really an issue for my boy, or just me projecting my worries and frustrations on him. Probably a fair mix of both and only time will tell how it will shake down.
Wednesday, October 19, 2011
A blessing in disguise
Okay, I'm back (in case anyone missed me). Boy, it has been a busy-beyond-belief six months. So much to say (get over yourself, dude), so little time to say it. So, let's dive right in.
As of the last post, I was less than happy, and more than a little worried and stressed-out about where my boy would go for kindergarten. Because public schools in my town are largely selected by lottery, there was no guarantee that we'd get into the seemingly excellent neighborhood school. As luck (or fate) would have it, however, we won the lottery. I can't say it was just luck-- we made my boy's IEP was written to emphasize the importance of the local school and to preview the shit-storm we would cause if assigned to a school that was not up to snuff. (an IEP, or Individual Education Plan, is the document negotiated with the school district that specifies the services needed for any child entitled to "special education").
So, it is now more than two months into the school year and I could hardly be more pleased. Let's start with the IEP meeting itself, which was over the Summer. I have read many horror stories by parents who had to fight tooth and nail for even the most basic services. Especially in the midst of a budget crisis, school districts often cut corners and limit services as much as possible. The IEP that came out of this meeting would be the blueprint for a year, and can be hard to change. So, we went in loaded for bear. I decided I would fight like hell for everything my boy might need. It really isn't a lot, but it is a constant throughout the day.
His needs are purely physical. For example, he needs someone to transfer him from his powerchair to the rug on the floor, or his low cube chair, for morning circle. He needs help to pick up markers or pencils, to reach things that he can't access, and to open his lunch box. I also wanted to have a "para-professional," as they are called, available for safety -- to make sure he doesn't fall over when sitting on the floor -- and to make necessary adaptations -- with writing utensils or with objects that have to be manipulated as part of a lesson, for example. It is little things, but lots of little things throughout the day. So I was hell-bent on getting him "100% designated adult support"--in other words, making sure that a paraprofessional was always available as needed for the entire school day. This, I understood from my research, was the brass ring that is entirely justified for kids with SMA, but is as elusive as a rent-controlled apartment on the Upper East Side in Manhattan.
So, I headed to the IEP with extensive notes and prepared for a tussle. I was not, however, prepared for what actually happened. The principal announced that my boy would get 100% designated adult support before we even asked for it. Not only that, he proclaimed that the school district would renovate the bathroom next to my boy's classroom to add an accessible stall. Otherwise, he explained, they would no longer be able to count on all the good press they get from him (he's a superstar principal who has been written up not only in the local paper, but also major national newspapers).
Wow. It is hard to express how wonderful this was. Not just because we got the support needed to provide the educational setting my boy needs (and that he and every other child deserves), but also because it showed the he was welcome at this school. The tone set by the principal was the exact opposite of the message we got from the head of school at the private school we pay an insane amount of money for my girl to attend.
Okay, so far so good, I thought. But, would there be follow-through? Wasn't this too good to be true? Apparently not. We just had our first parent-teacher conference and the only real issue with the support my boy gets is that one of the team of paraprofessionals does a bit too much for him--intervening when he really can do something for himself, even if a bit difficult. I must say, that's a good problem to have. Still important to address because he needs to be pushed to do all he can and not use his physical limitations as an excuse for the easy way out, but nonetheless a far better problem to have than neglect, lack of support, and miserly and begrudging "services."
So, the private school's decision was a blessing in disguise. They were not prepared to do it right, so better that they didn't try. I still don't like the way the message was delivered and was offended by the attitude and ignorance demonstrated by the head of school, but it worked out just as it needed to.
As of the last post, I was less than happy, and more than a little worried and stressed-out about where my boy would go for kindergarten. Because public schools in my town are largely selected by lottery, there was no guarantee that we'd get into the seemingly excellent neighborhood school. As luck (or fate) would have it, however, we won the lottery. I can't say it was just luck-- we made my boy's IEP was written to emphasize the importance of the local school and to preview the shit-storm we would cause if assigned to a school that was not up to snuff. (an IEP, or Individual Education Plan, is the document negotiated with the school district that specifies the services needed for any child entitled to "special education").
So, it is now more than two months into the school year and I could hardly be more pleased. Let's start with the IEP meeting itself, which was over the Summer. I have read many horror stories by parents who had to fight tooth and nail for even the most basic services. Especially in the midst of a budget crisis, school districts often cut corners and limit services as much as possible. The IEP that came out of this meeting would be the blueprint for a year, and can be hard to change. So, we went in loaded for bear. I decided I would fight like hell for everything my boy might need. It really isn't a lot, but it is a constant throughout the day.
His needs are purely physical. For example, he needs someone to transfer him from his powerchair to the rug on the floor, or his low cube chair, for morning circle. He needs help to pick up markers or pencils, to reach things that he can't access, and to open his lunch box. I also wanted to have a "para-professional," as they are called, available for safety -- to make sure he doesn't fall over when sitting on the floor -- and to make necessary adaptations -- with writing utensils or with objects that have to be manipulated as part of a lesson, for example. It is little things, but lots of little things throughout the day. So I was hell-bent on getting him "100% designated adult support"--in other words, making sure that a paraprofessional was always available as needed for the entire school day. This, I understood from my research, was the brass ring that is entirely justified for kids with SMA, but is as elusive as a rent-controlled apartment on the Upper East Side in Manhattan.
So, I headed to the IEP with extensive notes and prepared for a tussle. I was not, however, prepared for what actually happened. The principal announced that my boy would get 100% designated adult support before we even asked for it. Not only that, he proclaimed that the school district would renovate the bathroom next to my boy's classroom to add an accessible stall. Otherwise, he explained, they would no longer be able to count on all the good press they get from him (he's a superstar principal who has been written up not only in the local paper, but also major national newspapers).
Wow. It is hard to express how wonderful this was. Not just because we got the support needed to provide the educational setting my boy needs (and that he and every other child deserves), but also because it showed the he was welcome at this school. The tone set by the principal was the exact opposite of the message we got from the head of school at the private school we pay an insane amount of money for my girl to attend.
Okay, so far so good, I thought. But, would there be follow-through? Wasn't this too good to be true? Apparently not. We just had our first parent-teacher conference and the only real issue with the support my boy gets is that one of the team of paraprofessionals does a bit too much for him--intervening when he really can do something for himself, even if a bit difficult. I must say, that's a good problem to have. Still important to address because he needs to be pushed to do all he can and not use his physical limitations as an excuse for the easy way out, but nonetheless a far better problem to have than neglect, lack of support, and miserly and begrudging "services."
So, the private school's decision was a blessing in disguise. They were not prepared to do it right, so better that they didn't try. I still don't like the way the message was delivered and was offended by the attitude and ignorance demonstrated by the head of school, but it worked out just as it needed to.
Tuesday, March 29, 2011
It’s the hypocrisy that bothers me
So I live in a city where few things are more stressful or difficult than getting your kids into school. Due to a long history of segregation, public school assignments are not based on neighborhood, but on some black-box formula that ends up using parental education as a proxy. So, my daughter got assigned to a failing school located across from an open-air drug market. It’s a system with good, laudable motivations that ends up not solving the problem at all and, in fact, exacerbating racial and social divisions. When my daughter was applying for Kindergarten (first, how screwed up is it that you have to “apply” for Kindergarten?), she did not get into the excellent public school that is literally a block from our house. But, she did get into one of the most coveted private schools in the city—a school we loved for its inclusive philosophy and professed commitment to diversity and difference. I really wanted to send her to that school because not just because it would be great for her, but also because I thought it would be a welcoming place for our family and for my boy when it came time for him to go to Kindergarten.
The school’s website lauds its dedication to a diverse community and a “diverse learning environment,” and speaks of commitment to “an awareness that we each have distinct power” and emphasizes that “community members represent a diversity that encompasses differences in the human experience.” Pretty cool, huh? I thought how wonderful not just for my able-bodied daughter, but also for my boy. At the school tour, the P.E. teacher even talked about tailoring physical education to each student’s abilities and recognizing the difference in physical attributes among the community of students. Wow, how cool. How inspiring. How encouraging.
What crap.
My boy is going to Kindergarten in the Fall, so we opened a dialog with my girl’s school about it. We were very open about our concerns, recognized the investment the school would have to make to commit to true inclusion, and I assumed my boy would be welcomed. I assumed that this elite private school with the great philosophy would realize what my boy’s preschool had realized—that not-insignificant, but not massive adaptations are all that he needs and that he adds so much to any community that welcomes him. That the “burden” of helping him open his lunchbox, transferring him from powerchair to floor, and even assisting with toileting is minimal in comparison to what he brings to the community. Not just because of the benefit of a community replete with diversity, but also because he is so sweet, so smart, and so damn witty/funny. The able-bodied students are enriched, the teachers are enriched, the whole god-damned community is bettered. And, it’s easy. My boy has his physical challenges, but he is not burdened with behavioral or cognitive challenges. He makes it easy for a school to achieve its “diversity” commitment with just a few simple adaptations—rearrange the tables to there’s a bit more space to accommodate his powerchair, commit to some physical assistance, take some extra care that he doesn’t tumble over while sitting on a chair or the floor.
So, when my wife and I were summoned to a meeting with the head of school and director of admissions, I imagined it was so they could reassure us that they will do what is needed to meaningfully include him in the class and that they couldn’t wait for him to join the community. I actually expected that they were going to sell us on why we could trust them with our boy. How naïve was I? I imagine it’s obvious by now that they did not assure us of anything. Instead, they told us that the school is “just not right” for my boy.
Obviously, that was a disappointment. But, that’s not what really sticks in my craw. Certainly, I’m not happy that they were so limited in their thinking that they could not see the benefits the school would get by welcoming my boy. But what really bothers me is the way they delivered the message. In my view, they were dishonest and hypocritical. They could have said that accepting and including my boy was a commitment they just are not prepared to undertake. They could have explained that they worried about limited resources they have for “special needs” students, and that they just are not set up to address those needs and don’t want to make the effort to do so. That would have been honest. Disappointing, but honest.
Instead, they fell into bureaucrat and apologist mode. Telling us how “special” our boy is, how wonderful and smart, but he just “would not get what he needs” in their program. Theirs is a very “hands on” learning environment, they said (rather condescendingly). Okay, but (1) my boy does have hands, and (2) its Kindergarten for god’s sake…”hands on learning” is sort of the definition of such early education, right? No, they explained, they just worried that my boy couldn’t participate in everything, so (again) he wouldn’t get what he needs. Well, (1) his life is and will always be a life of not being able to participate in everything an able-bodied person can do…at least not in the traditional, typical way…but that’s okay. He doesn’t need to run to understand what running is. And, (2), I will decide what my boy “needs” and what is right for him, thank you very much…at least until he is old enough to make those decisions himself. How dare you tell me what is and is not “right” for him. And, if you “compliment” him one more time while delivering this message that he is unwelcome, I’ll scream.
I didn’t scream. But, I did say that their rejection, no matter how “considered,” was really just bigotry. And, I made the point that throughout history much has been done to oppress the powerless under the guise of acting “for their own good.”
I don’t think I’ll be invited to join the board of directors of the school anytime soon…
So, where does this leave my boy? Luckily, this rant has a happy ending. He got into the local public elementary school. It is absolutely the best result, and even if he had gotten accepted at the private school, we would have sent him to the public school. The public school principal is a rockstar, who has already been more welcoming, friendly, and interested in our family than the head of a school to which we pay an obscene amount of money in tuition every year. The public school is so close to our house that my boy can roll on up the street to get there every morning—providing a significant level of independence (not to mention ease). And, the public school has a legal duty to do all the things that any school should want to do on its own to provide a meaningfully inclusive learning environment.
In the end, what still bothers me is not the result, but the disheartening dishonesty displayed by the private school. I expected much more. Their fucking loss.
The school’s website lauds its dedication to a diverse community and a “diverse learning environment,” and speaks of commitment to “an awareness that we each have distinct power” and emphasizes that “community members represent a diversity that encompasses differences in the human experience.” Pretty cool, huh? I thought how wonderful not just for my able-bodied daughter, but also for my boy. At the school tour, the P.E. teacher even talked about tailoring physical education to each student’s abilities and recognizing the difference in physical attributes among the community of students. Wow, how cool. How inspiring. How encouraging.
What crap.
My boy is going to Kindergarten in the Fall, so we opened a dialog with my girl’s school about it. We were very open about our concerns, recognized the investment the school would have to make to commit to true inclusion, and I assumed my boy would be welcomed. I assumed that this elite private school with the great philosophy would realize what my boy’s preschool had realized—that not-insignificant, but not massive adaptations are all that he needs and that he adds so much to any community that welcomes him. That the “burden” of helping him open his lunchbox, transferring him from powerchair to floor, and even assisting with toileting is minimal in comparison to what he brings to the community. Not just because of the benefit of a community replete with diversity, but also because he is so sweet, so smart, and so damn witty/funny. The able-bodied students are enriched, the teachers are enriched, the whole god-damned community is bettered. And, it’s easy. My boy has his physical challenges, but he is not burdened with behavioral or cognitive challenges. He makes it easy for a school to achieve its “diversity” commitment with just a few simple adaptations—rearrange the tables to there’s a bit more space to accommodate his powerchair, commit to some physical assistance, take some extra care that he doesn’t tumble over while sitting on a chair or the floor.
So, when my wife and I were summoned to a meeting with the head of school and director of admissions, I imagined it was so they could reassure us that they will do what is needed to meaningfully include him in the class and that they couldn’t wait for him to join the community. I actually expected that they were going to sell us on why we could trust them with our boy. How naïve was I? I imagine it’s obvious by now that they did not assure us of anything. Instead, they told us that the school is “just not right” for my boy.
Obviously, that was a disappointment. But, that’s not what really sticks in my craw. Certainly, I’m not happy that they were so limited in their thinking that they could not see the benefits the school would get by welcoming my boy. But what really bothers me is the way they delivered the message. In my view, they were dishonest and hypocritical. They could have said that accepting and including my boy was a commitment they just are not prepared to undertake. They could have explained that they worried about limited resources they have for “special needs” students, and that they just are not set up to address those needs and don’t want to make the effort to do so. That would have been honest. Disappointing, but honest.
Instead, they fell into bureaucrat and apologist mode. Telling us how “special” our boy is, how wonderful and smart, but he just “would not get what he needs” in their program. Theirs is a very “hands on” learning environment, they said (rather condescendingly). Okay, but (1) my boy does have hands, and (2) its Kindergarten for god’s sake…”hands on learning” is sort of the definition of such early education, right? No, they explained, they just worried that my boy couldn’t participate in everything, so (again) he wouldn’t get what he needs. Well, (1) his life is and will always be a life of not being able to participate in everything an able-bodied person can do…at least not in the traditional, typical way…but that’s okay. He doesn’t need to run to understand what running is. And, (2), I will decide what my boy “needs” and what is right for him, thank you very much…at least until he is old enough to make those decisions himself. How dare you tell me what is and is not “right” for him. And, if you “compliment” him one more time while delivering this message that he is unwelcome, I’ll scream.
I didn’t scream. But, I did say that their rejection, no matter how “considered,” was really just bigotry. And, I made the point that throughout history much has been done to oppress the powerless under the guise of acting “for their own good.”
I don’t think I’ll be invited to join the board of directors of the school anytime soon…
So, where does this leave my boy? Luckily, this rant has a happy ending. He got into the local public elementary school. It is absolutely the best result, and even if he had gotten accepted at the private school, we would have sent him to the public school. The public school principal is a rockstar, who has already been more welcoming, friendly, and interested in our family than the head of a school to which we pay an obscene amount of money in tuition every year. The public school is so close to our house that my boy can roll on up the street to get there every morning—providing a significant level of independence (not to mention ease). And, the public school has a legal duty to do all the things that any school should want to do on its own to provide a meaningfully inclusive learning environment.
In the end, what still bothers me is not the result, but the disheartening dishonesty displayed by the private school. I expected much more. Their fucking loss.
Thursday, November 4, 2010
Make a Wish
I never thought I'd ever know a kid who qualified for one of those wishes from Make a Wish Foundation. Now, I not only know a bunch of kids who do, I happen to be the father of one. Boy, that was a real kick-in-the-teeth when I realized that. My little boy is considered to have such a "life-threatening" condition that good-hearted people would smile a little smile to see him meet a sports hero or ride in a racecar, or do whatever thing he wishes. What is behind those smiles? Certainly compassion, good wishes, caring. But also, I'm sure, a healthy dose of "thank god it's not me or my son." I get it, and I'm sure I used to feel that way too. But, I don't want to delve into that issue now.
Instead, I'm thinking of Make a Wish because of a Moth story I heard. If you haven't discovered The Moth, check it out. It is a storytelling series -- true stories told live on stage without notes. The podcasts are free on iTunes. It's amazing. The stories range from laugh-your-ass-off to choke-back-tears...and everything in between.
Anyway, the other week, I was listening to a Moth story told by the guy who played "Steve" in the kids t.v. show Blue's Clues. His real name is actually Steve. It was a pretty funny story. One aside to the main narrative was that Steve occassionally does work with Make a Wish. A kid with, say, brain cancer will say his wish is to meet Steve from Blue's Clues and Steve will fly to Dallas or Des Moines or wherever to make the kid's wish come true. The thing Steve said he notices, though, is that even though the kids are the ones who chose their wishes, they really chose it for their parents...that time and time again when these kids who are facing disease or disability or whatever have a chance to do something purely self-indulgent, the thing they really want to do is make their parents happy, to ease their worry, to make them smile. Wow.
I guess that doesn't surprise me. Kids are smart and understand a whole lot more than we give them credit.
Does my boy know that my wife and I stay up at night worrying about him when he has a cold? Does he know how much worry and concern we put into deciding where to send him to Kindergarten? Can he tell that there are moments that we just want to scream and jump out of our skin at the unfairness of his physical limitations? God, I hope not. We try to keep that hidden. But, he's pretty damn smart.
I don't think of him as a "wish" kid. But, if he has a wish, I hope that it is his and his alone.
Instead, I'm thinking of Make a Wish because of a Moth story I heard. If you haven't discovered The Moth, check it out. It is a storytelling series -- true stories told live on stage without notes. The podcasts are free on iTunes. It's amazing. The stories range from laugh-your-ass-off to choke-back-tears...and everything in between.
Anyway, the other week, I was listening to a Moth story told by the guy who played "Steve" in the kids t.v. show Blue's Clues. His real name is actually Steve. It was a pretty funny story. One aside to the main narrative was that Steve occassionally does work with Make a Wish. A kid with, say, brain cancer will say his wish is to meet Steve from Blue's Clues and Steve will fly to Dallas or Des Moines or wherever to make the kid's wish come true. The thing Steve said he notices, though, is that even though the kids are the ones who chose their wishes, they really chose it for their parents...that time and time again when these kids who are facing disease or disability or whatever have a chance to do something purely self-indulgent, the thing they really want to do is make their parents happy, to ease their worry, to make them smile. Wow.
I guess that doesn't surprise me. Kids are smart and understand a whole lot more than we give them credit.
Does my boy know that my wife and I stay up at night worrying about him when he has a cold? Does he know how much worry and concern we put into deciding where to send him to Kindergarten? Can he tell that there are moments that we just want to scream and jump out of our skin at the unfairness of his physical limitations? God, I hope not. We try to keep that hidden. But, he's pretty damn smart.
I don't think of him as a "wish" kid. But, if he has a wish, I hope that it is his and his alone.
Monday, July 19, 2010
Most people
Okay, so there are the people like those chronicled in my last post, but most people really are lovely.
Like the physical therapist we ran into a few days ago, who was so interested in my boy's Permobil Koala powerchair. My defenses were up, but it turned out her interest was for the children who are clients of hers and could use a chair as cool, kid-friendly, and powerful as my boy's "red racer." She was just lovely.
Like the balloon man who made both my kids great balloon animals and asked for nothing. He didn't treat my boy as a poor kid who needed a lift, rather the vibe I got was that he just thought both my kids were cute and could use a balloon. Just lovely.
Like the airport baggage handler who so appreciated the laminated direction-sheet I had hung on my boy's Koala in a purely self-serving attempt to prevent damage. He said he wished everyone did that and stuck around to meet my boy. Just lovely.
Like the train conductor who made sure my boy and his Koala got good seats on an old historic (1920's) tourist train, and checked in to make sure we didn't miss a thing. Just lovely.
Like the young couple traveling cross-country who offered to take a picture of the entire family, and even help us traverse some challenging terrain. Just lovely.
Like all the people we encounter everyday who simply greet my boy just like any other kid...or look right past us as they would any other family traveling down the same sidewalk.
And, like all you wonderful readers who have sent me such lovely, thoughtful (and thought-provoking) comments about my last post.
Like the physical therapist we ran into a few days ago, who was so interested in my boy's Permobil Koala powerchair. My defenses were up, but it turned out her interest was for the children who are clients of hers and could use a chair as cool, kid-friendly, and powerful as my boy's "red racer." She was just lovely.
Like the balloon man who made both my kids great balloon animals and asked for nothing. He didn't treat my boy as a poor kid who needed a lift, rather the vibe I got was that he just thought both my kids were cute and could use a balloon. Just lovely.
Like the airport baggage handler who so appreciated the laminated direction-sheet I had hung on my boy's Koala in a purely self-serving attempt to prevent damage. He said he wished everyone did that and stuck around to meet my boy. Just lovely.
Like the train conductor who made sure my boy and his Koala got good seats on an old historic (1920's) tourist train, and checked in to make sure we didn't miss a thing. Just lovely.
Like the young couple traveling cross-country who offered to take a picture of the entire family, and even help us traverse some challenging terrain. Just lovely.
Like all the people we encounter everyday who simply greet my boy just like any other kid...or look right past us as they would any other family traveling down the same sidewalk.
And, like all you wonderful readers who have sent me such lovely, thoughtful (and thought-provoking) comments about my last post.
Sunday, July 18, 2010
"Thank you for taking care of him"
Can you believe it? In the middle of a restaurant parking lot, some bozo calls me over after my boy has driven up into the van and ends up spouting the sentence in the title of this post. Followed, of course, with a "God bless you." (and I didn't even sneeze!)
As Paul Harvey would say, here's the rest of the story...
The family and I had just finished a very good lunch on a beautiful day and were just generally having a great time. Everyone loads into the minivan (my boy does so, of course, by driving up the ramp that has been deployed from the side of the van). I go into the van to transfer him from his powerchair to his car seat, then attach the tie-downs to the Koala and close the side door/ramp. As I walk around to the driver's side, I notice someone in a white pickup truck motioning in a way that a police report would decribe as "furtively." I thought it was probably some tourist who needed directions. So, I walk over and here is the conversation with the driver, whose 12-or-so-year-old son was sitting next to him silently. My inner, unspoken thoughts are in [brackets]:
Driver: "I don't mean to get real personal, but [oh boy, here it goes, what now?] what's wrong with your son?"
Me: "Nothing [and **** you, you ****]"
Driver: "Can he walk? [really, you just saw him drive a powerchair out of a restaurant and you're asking this stupid question, d-***?]"
Me: "No, but that doesn't mean there's anything wrong with him, there's not..."
Driver (interrupting): "Oh, I wasn't saying that. [yes you were, you creep, and why the hell did I come over here in the first place?]."
Me: "He's a perfectly happy, smart, mischevious, wonderful kid who happens to use a wheelchair to get around, there's nothing 'wrong.'"
Driver: "Yeah, he does really look happy. [unlike your sullen kid sitting next to you thinking "please shut up, Dad"]. I just want to say thank you for taking care of him. [and **** you for being such an ignorant bigot]"
Me: (rather flabergasted as this is a comment I've not heard before): "What? What do you mean? What in the world else would I do? [you sack of ****]. My son, my family live a full, happy, wonderful life..."
Driver (interrupting again): "No, it's just, you know, I just went for a mountain bike ride with my son, and...God bless you."
Me: [And, so what? I've been biking, sailing, running, swimming, horseback riding, etc., etc. with my son, and he's done more cool stuff at his age than I did before I was a teenager. I'll bet he's done a lot more cool stuff than your kid, and he certainly has a better role model for a father...and I don't want or need blessings from someone as close-minded as you].
I said nothing else, I just turned and walked away, not even acknowledging his last sentence.
Two things: First, I know he wasn't trying to be a close-minded, offensive bigot. But that doesn't change the fact that he is. Second, I wish I had not been so gob-smacked, so shocked, so nearly speechless. If I face this sort of situation again, I won't say the bracketed obscenities, but I hope it will go more like this:
Driver: "I don't mean to get real personal, but what's wrong with your son?"
Me: "There's nothing at all wrong with him. He's perfect, but I can't say the same for some people's attitudes and discomfort with disability."
Driver: "Can he walk?"
Me: "If he could walk, don't you think he'd be walking? He does use a wheelchair to get around, but that doesn't mean there's anything wrong with him, and frankly it's offensive to assume that a mobility challenge means there is something 'wrong.'"
Driver (interrupting): "Oh, I wasn't saying that."
Me: "Actually, you were. I think you probably did not mean to cause offense, but it is deeply offensive to assume that people living with disabilities are somehow 'broken' or 'imperfect' or less happy or well-adjusted than anyone else. I don't define my son by his abilities or disabilities, my son doesn't define himself in that way, and you shouldn't either. We all have different challenges, abilities, and disabilities. His happens to be physical and pretty obvious. But that doesn't mean he doesn't live a full, happy, magical life. He does -- he's actually pretty darn lucky compared to most people on the planet."
Driver: "Yeah, he does really look happy. I just want to say thank you for taking care of him."
Me: "Okay, now I think you probably again didn't mean any disrespect, but that comment is so deeply offensive on so many levels. First, he's my son and what would you expect any parent to do? Second, it's not your place to thank me for anything. You don't know my son, you don't know me, you don't know his needs, you don't know everything he adds to my life, you honestly don't know anything at all about this situation, except that you saw a four-year-old leave a restaurant on wheels. What gives you the right to call me over and make a comment like that? Third, that comment assumes that I am somehow burdened rather than blessed by my son. And, not only is that ignorant and wrong, but how dare you make that assumption? Thank you for not abandoning your son by the side of the road the first time he threw a tantrum at 2, or the time he broke one of your favorite things, or whenever something happened that required some parenting."
Driver (interrupting again): "No, it's just, you know, I just went for a mountain bike ride with my son, and...God bless you."
Me: "And, so what? I've been biking, sailing, running, swimming, horseback riding, etc., etc. with my son, and he's done more cool stuff at his age than I did before I was a teenager. I'll bet he's done a lot more cool stuff than your son sitting here. He is not so limited by his disability -- the real limitations come from an attitude by others that he is somehow less-than, or broken, or unhappy, or unlucky, or what have you. I ask you to please consider your attitude and why it has so offended me. And, it's not your place to 'bless' me. You don't know me, and, frankly, I don't want or need your blessings. I have plenty already. Three of them -- my two kids and my wife -- are sitting right there in that van and I'd rather be with them than talking to you in this parking lot, so I'll say goodbye and ask you to please just google disability blogs and read a few thoughts from the perspective of adults and teens living with disabilities. I really think you might find it eye-opening."
Okay, I know that's a fantasy conversation, but it's my fantasy so I'm sticking with it. I do think, though, that since anything that doesn't kill you helps you, I can use this pretty disquieting experience to improve my discussion of disability with ignorant and prejudiced strangers who regularly feel entitled to comment on my boy.
As Paul Harvey would say, here's the rest of the story...
The family and I had just finished a very good lunch on a beautiful day and were just generally having a great time. Everyone loads into the minivan (my boy does so, of course, by driving up the ramp that has been deployed from the side of the van). I go into the van to transfer him from his powerchair to his car seat, then attach the tie-downs to the Koala and close the side door/ramp. As I walk around to the driver's side, I notice someone in a white pickup truck motioning in a way that a police report would decribe as "furtively." I thought it was probably some tourist who needed directions. So, I walk over and here is the conversation with the driver, whose 12-or-so-year-old son was sitting next to him silently. My inner, unspoken thoughts are in [brackets]:
Driver: "I don't mean to get real personal, but [oh boy, here it goes, what now?] what's wrong with your son?"
Me: "Nothing [and **** you, you ****]"
Driver: "Can he walk? [really, you just saw him drive a powerchair out of a restaurant and you're asking this stupid question, d-***?]"
Me: "No, but that doesn't mean there's anything wrong with him, there's not..."
Driver (interrupting): "Oh, I wasn't saying that. [yes you were, you creep, and why the hell did I come over here in the first place?]."
Me: "He's a perfectly happy, smart, mischevious, wonderful kid who happens to use a wheelchair to get around, there's nothing 'wrong.'"
Driver: "Yeah, he does really look happy. [unlike your sullen kid sitting next to you thinking "please shut up, Dad"]. I just want to say thank you for taking care of him. [and **** you for being such an ignorant bigot]"
Me: (rather flabergasted as this is a comment I've not heard before): "What? What do you mean? What in the world else would I do? [you sack of ****]. My son, my family live a full, happy, wonderful life..."
Driver (interrupting again): "No, it's just, you know, I just went for a mountain bike ride with my son, and...God bless you."
Me: [And, so what? I've been biking, sailing, running, swimming, horseback riding, etc., etc. with my son, and he's done more cool stuff at his age than I did before I was a teenager. I'll bet he's done a lot more cool stuff than your kid, and he certainly has a better role model for a father...and I don't want or need blessings from someone as close-minded as you].
I said nothing else, I just turned and walked away, not even acknowledging his last sentence.
Two things: First, I know he wasn't trying to be a close-minded, offensive bigot. But that doesn't change the fact that he is. Second, I wish I had not been so gob-smacked, so shocked, so nearly speechless. If I face this sort of situation again, I won't say the bracketed obscenities, but I hope it will go more like this:
Driver: "I don't mean to get real personal, but what's wrong with your son?"
Me: "There's nothing at all wrong with him. He's perfect, but I can't say the same for some people's attitudes and discomfort with disability."
Driver: "Can he walk?"
Me: "If he could walk, don't you think he'd be walking? He does use a wheelchair to get around, but that doesn't mean there's anything wrong with him, and frankly it's offensive to assume that a mobility challenge means there is something 'wrong.'"
Driver (interrupting): "Oh, I wasn't saying that."
Me: "Actually, you were. I think you probably did not mean to cause offense, but it is deeply offensive to assume that people living with disabilities are somehow 'broken' or 'imperfect' or less happy or well-adjusted than anyone else. I don't define my son by his abilities or disabilities, my son doesn't define himself in that way, and you shouldn't either. We all have different challenges, abilities, and disabilities. His happens to be physical and pretty obvious. But that doesn't mean he doesn't live a full, happy, magical life. He does -- he's actually pretty darn lucky compared to most people on the planet."
Driver: "Yeah, he does really look happy. I just want to say thank you for taking care of him."
Me: "Okay, now I think you probably again didn't mean any disrespect, but that comment is so deeply offensive on so many levels. First, he's my son and what would you expect any parent to do? Second, it's not your place to thank me for anything. You don't know my son, you don't know me, you don't know his needs, you don't know everything he adds to my life, you honestly don't know anything at all about this situation, except that you saw a four-year-old leave a restaurant on wheels. What gives you the right to call me over and make a comment like that? Third, that comment assumes that I am somehow burdened rather than blessed by my son. And, not only is that ignorant and wrong, but how dare you make that assumption? Thank you for not abandoning your son by the side of the road the first time he threw a tantrum at 2, or the time he broke one of your favorite things, or whenever something happened that required some parenting."
Driver (interrupting again): "No, it's just, you know, I just went for a mountain bike ride with my son, and...God bless you."
Me: "And, so what? I've been biking, sailing, running, swimming, horseback riding, etc., etc. with my son, and he's done more cool stuff at his age than I did before I was a teenager. I'll bet he's done a lot more cool stuff than your son sitting here. He is not so limited by his disability -- the real limitations come from an attitude by others that he is somehow less-than, or broken, or unhappy, or unlucky, or what have you. I ask you to please consider your attitude and why it has so offended me. And, it's not your place to 'bless' me. You don't know me, and, frankly, I don't want or need your blessings. I have plenty already. Three of them -- my two kids and my wife -- are sitting right there in that van and I'd rather be with them than talking to you in this parking lot, so I'll say goodbye and ask you to please just google disability blogs and read a few thoughts from the perspective of adults and teens living with disabilities. I really think you might find it eye-opening."
Okay, I know that's a fantasy conversation, but it's my fantasy so I'm sticking with it. I do think, though, that since anything that doesn't kill you helps you, I can use this pretty disquieting experience to improve my discussion of disability with ignorant and prejudiced strangers who regularly feel entitled to comment on my boy.
Thursday, July 8, 2010
A tale of two businesses
Okay, first off, I realize how ridiculously long it has been since I've posted anything. I expect that if there are any regular readers, they're thinking what the ----? And, quickly deciding to forget about my little ramblings. Okay, I'll try to do better. I have a lot of in-progress posts and will strive to get them all posted soon.
With that preface, on to the topic at hand. Accessibile shopping.
I live in a wonderful city that is generally pretty aware of the need to make things wheelchair-accessible. But, it is a city with many old (pre-ADA) buildings, many of which are very...quirky...and not necessarily easy to adapt as needed to permit shoppers on wheels to frequent them. This, I have discovered, will be a constant issue for me as I go through my city--whether with or without my boy at my side (or up in front of me, or dawdling several paces behind, or wherever that sometimes-naughty four-year-old decides to travel). You see, I sort of see the world differently now. Where before I never noticed the little step or stoop here or there, now I see them all as if they were six feet high. After all, any rise more than a few inches might as well be a few feet for purposes of my boy's powerchair being able to overcome it.
With that backgound (I promise to not start every other paragraph with a "With that" caveat), on with the story. Some weeks ago, I was preparing for my son's fourth birthday party. At his request, I had agreed to perform some magic at the party. I once dabbled in magic in a long-ago mini-career, but had not done much magic in many years (at least not the needle-through-the-baloon type of magic...I think there's lots of other magic that happens every day, but that's another topic for another post).
Despite living in a metropolitan area with several million people, there is only one real brick-and-mortar magic shop around. And, it has a step. Just one, right out front from the street into the door. And, it's tall enough to be an insurmountable barrier. I've encountered shops with steps like this before and been pleasantly surprised that they had a portable ramp in a back closet that they gladly brought out to allow entry. Pretty low-tech, cheap, and simple, but immensely effective and a just-perfect solution for a small business. But, this magic shop? No such luck. I knew this, but I really, really wanted to go there to get some supplies for the party. So I called and spoke with the owner.
I very nicely explained my situation--that I'd love to come shop there, but can't get through the door because of the step and would he please get a simple ramp or something so I can become a regular customer. Okay, so I said I was the wheelchair-user because it was much simpler than explaining I wanted my son to be able to come in, even though he wouldn't actually accompany me until later, etc., etc. The point is that I don't want to frequent a business that does not welcome my boy. No more than I'd want to go to a restaurant that serves me, but not my African-American family members.
Naive me, I figured the owner would immediately say "oh, I never thought about that and yes, indeed, I can get a ramp on Tuesday, see you on Wednesday." Not so. He was outright hostile. Basically said too bad, he doesn't particularly care that I can't get in. Couldn't be bothered to even look into the cost of a ramp, and essentially couldn't give a shit. Wow. That was shocking and infuriating. And, pretty profoundly upsetting. This wasn't just a case of some ignorant person staring at my boy, this was someone saying he does not want to be bothered with him. Needless to say, I bought my magic supplies on-line.
Depressing and infuriating.
Flash forward a week or so and I decide to go to a great old bookstore that I've been to hundreds of times. I know the entry is no problem. I know that even though there is an upstairs section, the children's section is on the ground level so I can take my kids there and get them some books. We arrive, with my boy leading the charge, and find out the store has rearranged the sections and now the childrens' books are up on the other side of four stairs. It's an old, quirky building crammed with books...one of those great semi-musty bookshops that has been around for decades. A real landmark. But, all of a sudden, unwelcoming to my family.
So, I ask at the counter to talk to the manager. Soon two men come to see me--the co-owners of the shop. I explain the predicament and ask if there is some way they can install a ramp up those four steps so my boy can grow up going to this great shop instead of just Borders or Barnes & Noble. The owners are very thoughtful about it, tell me they struggled with the fact that some of their shop is not wheelchair acessible, and have tried to do what they can with the physical space they have. They looked into a ramp, they say, but it just won't work in the space. And, I can actually see their point. There just isn't enough room in this quirky 100-ish year old building. They explain that they will do anything they can to accomodate...even bringing an entire section worth of books down to a customer who uses a wheelchair. And, I can tell they are serious and not just feeding me bullshit excuses. We have a good talk and I explain how much I was looking forward to my kids growing up and going to this bookstore (totally sincere and true). They get it. They give me their contact information. They explain they're having a meeting with the third owner next week and they will all discuss it again.
Then, a week later, I get a call from one of them. He tells me they did meet and did look into the feasibility of a ramp again, but that it just won't fit. I explain that maybe they can try a lift--not an elevator but a simple, fairly inexpensive (as these things go) platform lift that would enable someone to wheel onto it, raise it, and wheel off on the top of these four steps. He gets on the web as I'm describing this device and sees it and says they'll look into it. And I believe they will. And, even if it ends up not working out, I feel that they really will try. Because their building is so old, I think it is exempt from ADA requirements to some extent (although these experiences remind me I really need to learn the details of that law), so they don't need to do anything at all. But it's clear that they want to if they can. I'm left feeling like they don't hold my boy ini contempt like the magic shop ass. No, they respect him and his mobility needs. It's a world of difference and restores some faith in people for me.
So, that's my tale of two businesses. I guess the moral is that what you do, although very important, isn't as important as how you do it. Simply caring, and recognizing everyone's need for respect and dignity can go a long, long way to creating a less-imperfect world.
With that preface, on to the topic at hand. Accessibile shopping.
I live in a wonderful city that is generally pretty aware of the need to make things wheelchair-accessible. But, it is a city with many old (pre-ADA) buildings, many of which are very...quirky...and not necessarily easy to adapt as needed to permit shoppers on wheels to frequent them. This, I have discovered, will be a constant issue for me as I go through my city--whether with or without my boy at my side (or up in front of me, or dawdling several paces behind, or wherever that sometimes-naughty four-year-old decides to travel). You see, I sort of see the world differently now. Where before I never noticed the little step or stoop here or there, now I see them all as if they were six feet high. After all, any rise more than a few inches might as well be a few feet for purposes of my boy's powerchair being able to overcome it.
With that backgound (I promise to not start every other paragraph with a "With that" caveat), on with the story. Some weeks ago, I was preparing for my son's fourth birthday party. At his request, I had agreed to perform some magic at the party. I once dabbled in magic in a long-ago mini-career, but had not done much magic in many years (at least not the needle-through-the-baloon type of magic...I think there's lots of other magic that happens every day, but that's another topic for another post).
Despite living in a metropolitan area with several million people, there is only one real brick-and-mortar magic shop around. And, it has a step. Just one, right out front from the street into the door. And, it's tall enough to be an insurmountable barrier. I've encountered shops with steps like this before and been pleasantly surprised that they had a portable ramp in a back closet that they gladly brought out to allow entry. Pretty low-tech, cheap, and simple, but immensely effective and a just-perfect solution for a small business. But, this magic shop? No such luck. I knew this, but I really, really wanted to go there to get some supplies for the party. So I called and spoke with the owner.
I very nicely explained my situation--that I'd love to come shop there, but can't get through the door because of the step and would he please get a simple ramp or something so I can become a regular customer. Okay, so I said I was the wheelchair-user because it was much simpler than explaining I wanted my son to be able to come in, even though he wouldn't actually accompany me until later, etc., etc. The point is that I don't want to frequent a business that does not welcome my boy. No more than I'd want to go to a restaurant that serves me, but not my African-American family members.
Naive me, I figured the owner would immediately say "oh, I never thought about that and yes, indeed, I can get a ramp on Tuesday, see you on Wednesday." Not so. He was outright hostile. Basically said too bad, he doesn't particularly care that I can't get in. Couldn't be bothered to even look into the cost of a ramp, and essentially couldn't give a shit. Wow. That was shocking and infuriating. And, pretty profoundly upsetting. This wasn't just a case of some ignorant person staring at my boy, this was someone saying he does not want to be bothered with him. Needless to say, I bought my magic supplies on-line.
Depressing and infuriating.
Flash forward a week or so and I decide to go to a great old bookstore that I've been to hundreds of times. I know the entry is no problem. I know that even though there is an upstairs section, the children's section is on the ground level so I can take my kids there and get them some books. We arrive, with my boy leading the charge, and find out the store has rearranged the sections and now the childrens' books are up on the other side of four stairs. It's an old, quirky building crammed with books...one of those great semi-musty bookshops that has been around for decades. A real landmark. But, all of a sudden, unwelcoming to my family.
So, I ask at the counter to talk to the manager. Soon two men come to see me--the co-owners of the shop. I explain the predicament and ask if there is some way they can install a ramp up those four steps so my boy can grow up going to this great shop instead of just Borders or Barnes & Noble. The owners are very thoughtful about it, tell me they struggled with the fact that some of their shop is not wheelchair acessible, and have tried to do what they can with the physical space they have. They looked into a ramp, they say, but it just won't work in the space. And, I can actually see their point. There just isn't enough room in this quirky 100-ish year old building. They explain that they will do anything they can to accomodate...even bringing an entire section worth of books down to a customer who uses a wheelchair. And, I can tell they are serious and not just feeding me bullshit excuses. We have a good talk and I explain how much I was looking forward to my kids growing up and going to this bookstore (totally sincere and true). They get it. They give me their contact information. They explain they're having a meeting with the third owner next week and they will all discuss it again.
Then, a week later, I get a call from one of them. He tells me they did meet and did look into the feasibility of a ramp again, but that it just won't fit. I explain that maybe they can try a lift--not an elevator but a simple, fairly inexpensive (as these things go) platform lift that would enable someone to wheel onto it, raise it, and wheel off on the top of these four steps. He gets on the web as I'm describing this device and sees it and says they'll look into it. And I believe they will. And, even if it ends up not working out, I feel that they really will try. Because their building is so old, I think it is exempt from ADA requirements to some extent (although these experiences remind me I really need to learn the details of that law), so they don't need to do anything at all. But it's clear that they want to if they can. I'm left feeling like they don't hold my boy ini contempt like the magic shop ass. No, they respect him and his mobility needs. It's a world of difference and restores some faith in people for me.
So, that's my tale of two businesses. I guess the moral is that what you do, although very important, isn't as important as how you do it. Simply caring, and recognizing everyone's need for respect and dignity can go a long, long way to creating a less-imperfect world.
Tuesday, March 16, 2010
Public property
I remember when my wife was first pregnant reading the baby book warnings that once pregnant you become public property. That strangers will comment on the big belly, and even touch a pregnant's woman stomach. I thought how odd. What would possess a stranger to have the audacity to do that to a stranger, pregnant or not. I did see a smidgen of that sort of thing during my wife's pregnancies--especially when she was carrying my boy (he was a really big baby...9+ pounds...and my bride's belly reflected that fact). But, all in all, there was no real public property effect from pregnancy.
I've also lived overseas in a country where white people were the minority--and rarely seen in very rural areas that I visited at times. At times, kids would be fascinated by the foreigner--and his hairy forearms. So, that was a bit of an experience in being public property.
But, neither of those experiences approach the public-property aspect that comes with being my boy, or with my boy. Simply put, it's impossible to go anywhere without receiving at least some stares and comments. Usually they're good-natured. The stares are most-commonly from curious people who are (1) amazed that a 3-1/2 year old can control a powerchair so deftly; (2) taken by how damn cute my boy is; or (3) impressed at how cool my boy's "red-racer" is (thanks to permobil for making a great-looking pediatric powerchair). These good-natured looks don't bother me. They are momentary and they come from a not-bad place.
But, then there are the two types of stares that make me want to rip people's faces off. First, the open-mouthed gape. These are the folks who glare and don't look away after a second or two. In fact, don't look away even after a mother-bear or papa-bear glare back. These are the people who turn their heads...sometimes their bodies...to keep staring. Really pretty unbelievable. Rare, but enraging.
Second, the "oh, how sad" puppy dog stare. It's when you just know the brain behind those eyes is thinking "poor little boy" or "poor family." It makes me want to say "save your goddamned pity for someone who needs it--we sure don't." What the puppy-dog starer doesn't know is that my boy is not sad, or unfortunate, or an object worthy of pity. He's a happy, funny, and deeply-loved kid. And, our family neither needs nor wants anyone's pity. We're happy as hell. As my wife said to me the other day -- we dance. We fucking dance! In every possible way. It's what we do. And, if you can't dance, well, you know the rest... (thanks for that one, Emma G).
So, those are the looks. But, public property manifests itself verbally and not just visually. The comments, too, fall into several categories, but that is a topic for a future post.
I've also lived overseas in a country where white people were the minority--and rarely seen in very rural areas that I visited at times. At times, kids would be fascinated by the foreigner--and his hairy forearms. So, that was a bit of an experience in being public property.
But, neither of those experiences approach the public-property aspect that comes with being my boy, or with my boy. Simply put, it's impossible to go anywhere without receiving at least some stares and comments. Usually they're good-natured. The stares are most-commonly from curious people who are (1) amazed that a 3-1/2 year old can control a powerchair so deftly; (2) taken by how damn cute my boy is; or (3) impressed at how cool my boy's "red-racer" is (thanks to permobil for making a great-looking pediatric powerchair). These good-natured looks don't bother me. They are momentary and they come from a not-bad place.
But, then there are the two types of stares that make me want to rip people's faces off. First, the open-mouthed gape. These are the folks who glare and don't look away after a second or two. In fact, don't look away even after a mother-bear or papa-bear glare back. These are the people who turn their heads...sometimes their bodies...to keep staring. Really pretty unbelievable. Rare, but enraging.
Second, the "oh, how sad" puppy dog stare. It's when you just know the brain behind those eyes is thinking "poor little boy" or "poor family." It makes me want to say "save your goddamned pity for someone who needs it--we sure don't." What the puppy-dog starer doesn't know is that my boy is not sad, or unfortunate, or an object worthy of pity. He's a happy, funny, and deeply-loved kid. And, our family neither needs nor wants anyone's pity. We're happy as hell. As my wife said to me the other day -- we dance. We fucking dance! In every possible way. It's what we do. And, if you can't dance, well, you know the rest... (thanks for that one, Emma G).
So, those are the looks. But, public property manifests itself verbally and not just visually. The comments, too, fall into several categories, but that is a topic for a future post.
Friday, March 12, 2010
of Temple Grandin and Jenny McCarthy
HBO has produced a wonderful biopic on Temple Grandin. Dr. Grandin is a professor of Animal Sciences at Colorado State University and has pretty single-handedly reformed the entire livestock-handling industry. About half of all cattle in the U.S. go through a Grandin-designed system from feedlot-to-slaughter. Her designs have been embraced by the cattle industry and also lauded by animal welfare, and even animal rights, advocates. Cattle who pass through her systems endure much less stress, pain, and suffering.
Dr. Grandin also has autism. She credits her autism as enabling her to think visually and put herself in the place of cattle to understand what causes them stress and suffering. She has written and lectured widely on autism as well as animal science, animal welfare, and humane slaughter. In short, she's pretty amazing.
While I haven't read any of her autobiographical books, if the HBO movie is accurate, her mother was told her daughter would never talk and should be institutionalized as a young child. Her mother refused to follow that "standard of care" and instead encouraged and pushed her daughter to attend school, college even. Her mother, as with so many mothers of children with "disabilities" was her advocate. In the movie, one of her mother's mantra's is that Temple and life with autism is "different, not less."
I was struck with the horrible thought of how many children just like Dr. Grandin were institutionalized, neglected, and essentially forced to live up to the no-expectations curse that was put on them. What a crime against humanity for the children, their parents, and society at large.
Dr. Grandin has taught an entire industry that no doubt is often hostile to change, to women, and to animal welfare advocates how to do things better. Not just "different, not less," but "different AND better." What has society lost in snuffing out the potential of all the other Grandins over many generations who were condemned to institutions and the tyranny of low expectations?
Jenny McCarthy has also been in the news a lot lately. McCarthy, of course, came to fame as a Playboy model and then a comedienne and television personality. But, she's best known now as a speaker and activist on autism issues.
Full disclosure -- I don't have any direct experience with autism. But there is something about Ms. McCarthy's approach that I find deeply disturbing as a parent of a child with a disability. McCarthy is focused on a couple things that stand out. First, the supposed vaccine-autism link and second, the idea that kids with autism can be "cured" or, more crudely in her words, "fixed."
I'll leave the vaccine thing aside, except to say that I don't buy it. Not just because of the many studies debunking the one published study claiming a link, but also because I just don't see a motive in this alleged public health cover-up. What is the upside for the "vaccine deniers"? Money? Fame? Desire to create more autistic kids?
Okay, on to my larger concern, the idea that kids living with autism need to be "fixed." Again, I don't know if "a cure" is possible or not, but I have grave concerns about the message that they NEED to be fixed. And, the implication to parents that if they try all the things suggested by the "fixers" and it doesn't work, they have failed. Certainly, there are interventions, therapies, etc. that are no doubt god-sends, valuable, wonderful. For example, Grandin invented a type of squeeze-chute for herself to calm her during times of sensory overload and it is apparently helpful for others living with autism. But an intervention or therapy is not a "fix." An intervention or therapy helps people living with autism, or other challenges, to achieve their potential.
Perpetuating the idea that people with differences need to be "fixed", in contrast, does a lot to prevent those people from living up to their potential. It stunts growth, frustrates development, and fosters the attitudes that make for an unwelcoming and hostile society at large.
By advocating "fixing" kids with autism (or any other disability), it also sends the message that these people are not just different, but that they're "less." And, I find that abominably prejudiced. Stone age thinking. Whatever the equivalent is to racist when talking about anti-disability biases and attitudes.
Come to think of it, why don't we have a word for that? We have "racist", "sexist", "homophobic", "classist", etc. Okay, that's a topic for a future post.
Would anyone in this day and age suggest that we can "fix" being of color? I know there are still the "you can cure homosexuality" bigots out there, but I do think they are largely seen as the bigots they are.
Dr. Grandin also has autism. She credits her autism as enabling her to think visually and put herself in the place of cattle to understand what causes them stress and suffering. She has written and lectured widely on autism as well as animal science, animal welfare, and humane slaughter. In short, she's pretty amazing.
While I haven't read any of her autobiographical books, if the HBO movie is accurate, her mother was told her daughter would never talk and should be institutionalized as a young child. Her mother refused to follow that "standard of care" and instead encouraged and pushed her daughter to attend school, college even. Her mother, as with so many mothers of children with "disabilities" was her advocate. In the movie, one of her mother's mantra's is that Temple and life with autism is "different, not less."
I was struck with the horrible thought of how many children just like Dr. Grandin were institutionalized, neglected, and essentially forced to live up to the no-expectations curse that was put on them. What a crime against humanity for the children, their parents, and society at large.
Dr. Grandin has taught an entire industry that no doubt is often hostile to change, to women, and to animal welfare advocates how to do things better. Not just "different, not less," but "different AND better." What has society lost in snuffing out the potential of all the other Grandins over many generations who were condemned to institutions and the tyranny of low expectations?
Jenny McCarthy has also been in the news a lot lately. McCarthy, of course, came to fame as a Playboy model and then a comedienne and television personality. But, she's best known now as a speaker and activist on autism issues.
Full disclosure -- I don't have any direct experience with autism. But there is something about Ms. McCarthy's approach that I find deeply disturbing as a parent of a child with a disability. McCarthy is focused on a couple things that stand out. First, the supposed vaccine-autism link and second, the idea that kids with autism can be "cured" or, more crudely in her words, "fixed."
I'll leave the vaccine thing aside, except to say that I don't buy it. Not just because of the many studies debunking the one published study claiming a link, but also because I just don't see a motive in this alleged public health cover-up. What is the upside for the "vaccine deniers"? Money? Fame? Desire to create more autistic kids?
Okay, on to my larger concern, the idea that kids living with autism need to be "fixed." Again, I don't know if "a cure" is possible or not, but I have grave concerns about the message that they NEED to be fixed. And, the implication to parents that if they try all the things suggested by the "fixers" and it doesn't work, they have failed. Certainly, there are interventions, therapies, etc. that are no doubt god-sends, valuable, wonderful. For example, Grandin invented a type of squeeze-chute for herself to calm her during times of sensory overload and it is apparently helpful for others living with autism. But an intervention or therapy is not a "fix." An intervention or therapy helps people living with autism, or other challenges, to achieve their potential.
Perpetuating the idea that people with differences need to be "fixed", in contrast, does a lot to prevent those people from living up to their potential. It stunts growth, frustrates development, and fosters the attitudes that make for an unwelcoming and hostile society at large.
By advocating "fixing" kids with autism (or any other disability), it also sends the message that these people are not just different, but that they're "less." And, I find that abominably prejudiced. Stone age thinking. Whatever the equivalent is to racist when talking about anti-disability biases and attitudes.
Come to think of it, why don't we have a word for that? We have "racist", "sexist", "homophobic", "classist", etc. Okay, that's a topic for a future post.
Would anyone in this day and age suggest that we can "fix" being of color? I know there are still the "you can cure homosexuality" bigots out there, but I do think they are largely seen as the bigots they are.
Thursday, February 11, 2010
Essential reading
I've been thinking a lot lately about Harriet McBryde Johnson, a lawyer, author, and disability rights activist who died in 2008. I've been reading her excellent autobiography Too Late to Die Young, and seeking out her other writings to help guide me in striving to raise my boy to be a proud trouble-maker following in her tiretracks.
I imagine I'll post more thoughts on her writings and perspectives later, but for now, just two things:
First, I suggest reading her "Unspeakable Conversations" essay from the New York Times magazine in 2003. Here's the official link (subscription required) http://www.nytimes.com/2003/02/16/magazine/16DISABLED.html.
This essay comes out of well-known debates she had with philosopher Peter Singer. I read a good deal of Peter Singer's writings long before ever having a connection to disability issues, and it's wonderful to read Johnson's treatment of some of his most controversial philosophical positions. An interesting note is that Peter Singer came to respect and like Harriet Johnson a great deal and wrote an obituary for her after she died.
Second, I just have to share one of the most wonderful lines from Johnson's autobiography:
"When I die, I might as well die alive."
I imagine I'll post more thoughts on her writings and perspectives later, but for now, just two things:
First, I suggest reading her "Unspeakable Conversations" essay from the New York Times magazine in 2003. Here's the official link (subscription required) http://www.nytimes.com/2003/02/16/magazine/16DISABLED.html.
This essay comes out of well-known debates she had with philosopher Peter Singer. I read a good deal of Peter Singer's writings long before ever having a connection to disability issues, and it's wonderful to read Johnson's treatment of some of his most controversial philosophical positions. An interesting note is that Peter Singer came to respect and like Harriet Johnson a great deal and wrote an obituary for her after she died.
Second, I just have to share one of the most wonderful lines from Johnson's autobiography:
"When I die, I might as well die alive."
Monday, February 8, 2010
Rockin' out
I sit here as my daughter hits the auto-song function on her electronic keyboard (piano practice is over) and is dancing furiously to the jazzy tune that is blasting from that cool device. My boy is loves it -- "come on you guys, get up and dance" he yells to us. "Mommy, dance!" ... "Daddy go ahead and dance!" he insists as he cuts quite the rug himself, sitting in his chair in the dining room.
He insists on dancing from his seat in the dining room for two rounds of "rockin out", but I finally convince him to join us in the living room for the third and fourth rock-outs.
The Axis Dance company (http://www.axisdance.org) ain't got nothin' on us.
He insists on dancing from his seat in the dining room for two rounds of "rockin out", but I finally convince him to join us in the living room for the third and fourth rock-outs.
The Axis Dance company (http://www.axisdance.org) ain't got nothin' on us.
Tuesday, January 26, 2010
Of bathrooms and parking lots
We're far from a barrier-free world...a long way from achieving the Dream of which I wrote in my last post. But, thank God for the Americans with Disabilities Act. I cannot imagine navigating through the world with my boy in a pre-ADA world. What in the world did people who use wheelchairs do before sidewalk cut-outs and accessible entrances to businesses, airports, libraries, and museums? I think often of the disabled ADA activists who literally crawled up the U.S. Capitol steps on the run-up to the passage of that great civil rights law to demonstrate why it was so sorely needed.
Thank you, thank you, thank you to you all. Thank you to Republican Dick Thornburg and Democrat Ted Kennedy who were both instrumental in that landmark law.
Accessibility issues never really entered my consciousness until having a
child. And then, it was only to note how great sidewalk cut-outs are when
pushing a stroller. Now, of course, I think about accessibility every single day. Obviously, when I¹m with my boy, I have to search out the elevator at the mall, choose a route to the grocery store with cut-outs, and find a van-accessible parking space. But, it's also with me when I'm without him. I find myself noting whether or not my boy could get into whatever shop or restaurant or office I'm visiting; being really happy when a simple ramp makes a whole establishment accessible (and not just the foyer); and realizing that I'm not going to buy anything at that little boutique after all because my boy couldn't get up the step in front and through the door.
There are two particular components of an accessible world that I rely on and need almost every time I'm out with my boy--a disabled bathroom stall and a van-accessible parking space. Both can generally be found most places ... it's actually really great that nearly every public restroom has one larger stall that can accommodate a wheelchair and that blue curbs and disabled parking spaces are commonplace.
But, just because they're commonplace doesn¹t mean they're available to people who really need them.
Let's talk bathrooms. I've always liked the disabled stalls. Long before kids, long before thinking I'd ever have first-hand experience with disability issues, I took advantage of those large stalls. First, they¹re great when you need to change clothes--like at the airport when you desperately want to get out of the business suit and into jeans for a long flight. Second, they feel a bit more private than the other stalls, which is nice. And third, if you have a young kid with you, it's a lot easier to help her/him when there¹s space to turn around.
I always figured that if the large stall is empty, no harm in going ahead and using it. After all, I'll be done soon enough and the chances of a wheelchair-user needing it at the same time is low. I have learned, though, how wrong-thinking that was. Because so damn many able-bodied people think the same way, the large stall ends up being the first one taken -- the on most often used -- and therefore the one least likely to be free when someone really needs it.
At first, I totally understood that people-by and large-mean no disrespect or thoughtlessness in using the big stall. And I know that's true. But when a 3-year-old needs to pee, he needs to pee. And it is back-breaking, as well as completely lacking in privacy for my boy, to have to transfer him from his powerchair outside a little stall onto the toilet in the little stall.
So, I now have a routine. If we go into a bathroom and the big stall is occupied, I'll look underneath to check for a walker, or crutches, or a wheelchair. When none is there, I'll say something like, "Well, dude, looks like someone is using the only stall that will fit your wheelchair, and all these empty ones out here are too small, so we'll have to wait for him to finish" in a loud (albeit friendly) voice. That usually results in a quick flush and a hurried exit from the able-bodied big-stall-occupier.
I also tell this tale to everyone I know so they will remeber to use the little stalls and keep the big one open for those who need it.
Parking is another issue. Unlike stall-users who, I think, just don't think about whether someone might need the space, I consider disabled-parking abusers by and large selfish, callous, and rude. Well, I guess there are different types.
First type: the "I'm just waiting for my friend and will pull out of it anytime someone needs it." Okay, I know that may not seem completely unreasonable and you don't mean to be rude, but if you think for a second, you'll realize that: (1) if it appears that all the spots are taken, someone who really needs one likely will just keep driving around looking in vain for a spot; (2) people with physical disabilities aren't really able to stop, get out of their car and ask you to please move; and (3) disabled only means disabled only, damnit!
Second type: the "I have a disabled placard even though I don't really need it." Okay, maybe you can't really tell from seeing someone spring from their car and run into Macy's whether maybe they really have some hidden disability (such as a legitimate medical issue like pulmonary disease, etc.) and do need that spot. But, come on! I can't count high enough to keep track of all the perfectly-able-bodied-appearing people who have taken spots I need to unload my son from the van. I know, I just know in my heart that a huge number of people with disabled placards don't really need them and are just abusing the system. And, I'm sorry, but elderly does not necessarily equal disabled. My parents are pushing 80 and they park in steerage just like everyone else because they can actually walk through a parking lot and don't need space to unload equipment. Able-bodied people of any age need to leave the spots for those who really need them.
Third type: the "sack of ----." This is rare, but happens. People with no disability and no placard take up a disabled parking space because they are too lazy or too selfish or whatever to deal with parking like everyone else. They need to have their cars towed and sold at auction to fund disabled services for the city. Once, we even had a car park in the cross-hatch of a disabled spot--making it impossible to open the side door of our van and deploy the ramp. I've never wanted to slash a set of tires more in my life (of course, I didn't). But such selfishness really is enraging.
Also in this category are people who fraudulently get a disabled placard. See this enraging recent San Francisco Chronicle story about abuse of disabled placards: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/03/26/MNGOLORI7C1.DTL&hw=placards&sn=001&sc=1000. It focuses on the loss to the city of parking fees. I think I remember a Dateline piece some time back where they approached people who had placards, but looked very suspiciously able-bodied.
Speaking of cross-hatches -- people put all kinds of stuff in them. Shopping carts are the most common thing, but also stores leave empty pallettes, and once a moped parked in one next to my van...again making entry and exit impossible for my boy.
Okay, what's the point of this rant? I don't know, but it feels good to rant sometimes. Seriously, I am convinced that most of these offenses are simply out of ignorance and that we need a public education campaign letting people know that those stalls, those spots, those sidewalk cut-outs that people stand in all the time, exist for a very specific reason and that the able-bodied need to just keep them open. Even if it seems silly, even if it seems unlikely that anyone within miles actually needs it, just leave it free and clear because when someone does need a van-accessible space, or a large bathroom stall, or a sidewalk cut-out, they really really need it.
Oh, a ticket for illegally parking in a disabled spot should cost at least $1,000 for the first offense, $5,000 for the second, and on the third you should have your license suspended for at least one year.
Unless it's a Lamborshini Countach like the one in the picture above (found on the blog http://infospigot.typepad.com/infospigot_the_chronicles/2007/03/powerful_sports.html). This car parked outside a library in Berkeley, California actually had a placard hanging on the rear-view mirror, but boy one wonders. It's hard enough to climb into a sports car as an able-bodied twenty year old, so it's hard to imagine someone with a true physical disability would drive such a beast. If the placard for this "supercar" was not legitimate, I'd want the car seized and auctioned off and all money given to disability rights groups or other non-profits that serve people with disabilities.
Thank you, thank you, thank you to you all. Thank you to Republican Dick Thornburg and Democrat Ted Kennedy who were both instrumental in that landmark law.
Accessibility issues never really entered my consciousness until having a
child. And then, it was only to note how great sidewalk cut-outs are when
pushing a stroller. Now, of course, I think about accessibility every single day. Obviously, when I¹m with my boy, I have to search out the elevator at the mall, choose a route to the grocery store with cut-outs, and find a van-accessible parking space. But, it's also with me when I'm without him. I find myself noting whether or not my boy could get into whatever shop or restaurant or office I'm visiting; being really happy when a simple ramp makes a whole establishment accessible (and not just the foyer); and realizing that I'm not going to buy anything at that little boutique after all because my boy couldn't get up the step in front and through the door.
There are two particular components of an accessible world that I rely on and need almost every time I'm out with my boy--a disabled bathroom stall and a van-accessible parking space. Both can generally be found most places ... it's actually really great that nearly every public restroom has one larger stall that can accommodate a wheelchair and that blue curbs and disabled parking spaces are commonplace.
But, just because they're commonplace doesn¹t mean they're available to people who really need them.
Let's talk bathrooms. I've always liked the disabled stalls. Long before kids, long before thinking I'd ever have first-hand experience with disability issues, I took advantage of those large stalls. First, they¹re great when you need to change clothes--like at the airport when you desperately want to get out of the business suit and into jeans for a long flight. Second, they feel a bit more private than the other stalls, which is nice. And third, if you have a young kid with you, it's a lot easier to help her/him when there¹s space to turn around.
I always figured that if the large stall is empty, no harm in going ahead and using it. After all, I'll be done soon enough and the chances of a wheelchair-user needing it at the same time is low. I have learned, though, how wrong-thinking that was. Because so damn many able-bodied people think the same way, the large stall ends up being the first one taken -- the on most often used -- and therefore the one least likely to be free when someone really needs it.
At first, I totally understood that people-by and large-mean no disrespect or thoughtlessness in using the big stall. And I know that's true. But when a 3-year-old needs to pee, he needs to pee. And it is back-breaking, as well as completely lacking in privacy for my boy, to have to transfer him from his powerchair outside a little stall onto the toilet in the little stall.
So, I now have a routine. If we go into a bathroom and the big stall is occupied, I'll look underneath to check for a walker, or crutches, or a wheelchair. When none is there, I'll say something like, "Well, dude, looks like someone is using the only stall that will fit your wheelchair, and all these empty ones out here are too small, so we'll have to wait for him to finish" in a loud (albeit friendly) voice. That usually results in a quick flush and a hurried exit from the able-bodied big-stall-occupier.
I also tell this tale to everyone I know so they will remeber to use the little stalls and keep the big one open for those who need it.
Parking is another issue. Unlike stall-users who, I think, just don't think about whether someone might need the space, I consider disabled-parking abusers by and large selfish, callous, and rude. Well, I guess there are different types.
First type: the "I'm just waiting for my friend and will pull out of it anytime someone needs it." Okay, I know that may not seem completely unreasonable and you don't mean to be rude, but if you think for a second, you'll realize that: (1) if it appears that all the spots are taken, someone who really needs one likely will just keep driving around looking in vain for a spot; (2) people with physical disabilities aren't really able to stop, get out of their car and ask you to please move; and (3) disabled only means disabled only, damnit!
Second type: the "I have a disabled placard even though I don't really need it." Okay, maybe you can't really tell from seeing someone spring from their car and run into Macy's whether maybe they really have some hidden disability (such as a legitimate medical issue like pulmonary disease, etc.) and do need that spot. But, come on! I can't count high enough to keep track of all the perfectly-able-bodied-appearing people who have taken spots I need to unload my son from the van. I know, I just know in my heart that a huge number of people with disabled placards don't really need them and are just abusing the system. And, I'm sorry, but elderly does not necessarily equal disabled. My parents are pushing 80 and they park in steerage just like everyone else because they can actually walk through a parking lot and don't need space to unload equipment. Able-bodied people of any age need to leave the spots for those who really need them.
Third type: the "sack of ----." This is rare, but happens. People with no disability and no placard take up a disabled parking space because they are too lazy or too selfish or whatever to deal with parking like everyone else. They need to have their cars towed and sold at auction to fund disabled services for the city. Once, we even had a car park in the cross-hatch of a disabled spot--making it impossible to open the side door of our van and deploy the ramp. I've never wanted to slash a set of tires more in my life (of course, I didn't). But such selfishness really is enraging.
Also in this category are people who fraudulently get a disabled placard. See this enraging recent San Francisco Chronicle story about abuse of disabled placards: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/03/26/MNGOLORI7C1.DTL&hw=placards&sn=001&sc=1000. It focuses on the loss to the city of parking fees. I think I remember a Dateline piece some time back where they approached people who had placards, but looked very suspiciously able-bodied.
Speaking of cross-hatches -- people put all kinds of stuff in them. Shopping carts are the most common thing, but also stores leave empty pallettes, and once a moped parked in one next to my van...again making entry and exit impossible for my boy.
Okay, what's the point of this rant? I don't know, but it feels good to rant sometimes. Seriously, I am convinced that most of these offenses are simply out of ignorance and that we need a public education campaign letting people know that those stalls, those spots, those sidewalk cut-outs that people stand in all the time, exist for a very specific reason and that the able-bodied need to just keep them open. Even if it seems silly, even if it seems unlikely that anyone within miles actually needs it, just leave it free and clear because when someone does need a van-accessible space, or a large bathroom stall, or a sidewalk cut-out, they really really need it.
Oh, a ticket for illegally parking in a disabled spot should cost at least $1,000 for the first offense, $5,000 for the second, and on the third you should have your license suspended for at least one year.
Unless it's a Lamborshini Countach like the one in the picture above (found on the blog http://infospigot.typepad.com/infospigot_the_chronicles/2007/03/powerful_sports.html). This car parked outside a library in Berkeley, California actually had a placard hanging on the rear-view mirror, but boy one wonders. It's hard enough to climb into a sports car as an able-bodied twenty year old, so it's hard to imagine someone with a true physical disability would drive such a beast. If the placard for this "supercar" was not legitimate, I'd want the car seized and auctioned off and all money given to disability rights groups or other non-profits that serve people with disabilities.
Tuesday, January 19, 2010
The Dream continues
Ben Mattlin has a wonderful piece in last Friday's USA Today about the lessons of Martin Luther King and disability rights (available here: http://benmattlin.blogspot.com/
and at the USA Today website here: http://blogs.usatoday.com/oped/2010/01/column-disabled-owe-personal-debt-to-king-as-well-.html#more).
As the family listened to some of Dr. King's speeches yesterday (a yearly tradition), I couldn't help thinking of how his words still resonate not just for racial justice but also to disability rights. And, indeed, to so many politicians and pundits of today who suffer from the same "high blood pressure of words but anemia of deeds" against which Dr. King warned in his "Give us the Ballot" address.
We couldn't listen to "I Have a Dream" as a family, because my girl's class is listening to it today in school and she insisted on waiting to hear it with them. A demand to which I happily acceded.
But thinking of Dreams of the sort imagined on the Lincoln Memorial steps that day in '63, made me realize that my Dream for my boy is not that he no longer need to use a wheelchair, but that it not matter one bit that he does...
...that no store will have an entry step that poses an insurmountable barrier
...that every playground will have ramps to the top of every structure so that all may play and reach the same heights
...that all new homes and buildings will incorporate universal design
...and that my boy not have to endure the stinging stares of curiosity and the caustic comments of ignorance.
My Dream is a barrier-free world and a consciousness of disability that does not victimize or pity, but understands and respects. Seems a long way off, but I'll bet few in 1963 ever dreamed there would be an African-American president elected less than half a century later.
and at the USA Today website here: http://blogs.usatoday.com/oped/2010/01/column-disabled-owe-personal-debt-to-king-as-well-.html#more).
As the family listened to some of Dr. King's speeches yesterday (a yearly tradition), I couldn't help thinking of how his words still resonate not just for racial justice but also to disability rights. And, indeed, to so many politicians and pundits of today who suffer from the same "high blood pressure of words but anemia of deeds" against which Dr. King warned in his "Give us the Ballot" address.
We couldn't listen to "I Have a Dream" as a family, because my girl's class is listening to it today in school and she insisted on waiting to hear it with them. A demand to which I happily acceded.
But thinking of Dreams of the sort imagined on the Lincoln Memorial steps that day in '63, made me realize that my Dream for my boy is not that he no longer need to use a wheelchair, but that it not matter one bit that he does...
...that no store will have an entry step that poses an insurmountable barrier
...that every playground will have ramps to the top of every structure so that all may play and reach the same heights
...that all new homes and buildings will incorporate universal design
...and that my boy not have to endure the stinging stares of curiosity and the caustic comments of ignorance.
My Dream is a barrier-free world and a consciousness of disability that does not victimize or pity, but understands and respects. Seems a long way off, but I'll bet few in 1963 ever dreamed there would be an African-American president elected less than half a century later.
Sunday, December 27, 2009
Unconditional love
Wow. I sit here with a tear rolling down my cheek. I'm not sad, I'm just so touched and happy and amazed at the love one person can feel for another. No, not me loving my boy (well, of course, I do, but this post is not about that). I'm talking about the unconditional love of an adoring sibling.
See, my boy has an older sister. She's six. She's a typically-developing spit-fire. She can be quite a handful, but she's also the most loving, caring, amazing little human. Here's what just happened...but first the background. My kids share a room. Their beds are along opposite walls from each other. When we tuck the kids in, we always pull up the covers and give them kisses. My girl won't get to sleep unless she has at least a sheet on her (just like me...I need at least some covers). My boy can't pull his covers up because of the muscle weakness from spinal muscular atrophy. Thus, we always pull up the covers and tuck them in.
So, it's been a really great day so far. Took the kids to a museum, saw a great mummy exhibit that they thought was really cool, took the boy for a much-needed haircut, and played Sorry and Zingo as a family before bedtime. They were really tired by the time teeth were brushed, pajamas were on, and books were read. And when they're over-tired, they don't want to sleep. And when they don't want to sleep, they don't want covers on. So, the wife and I just told them goodnight and turned off the lights without covering them up. So be it -- my girl can pull her own covers up when she's good and ready, and I can go in after my boy has fallen asleep and cover him up.
Flash forward 15 minutes. I tiptoe into the kids' room and...my boy already has his covers puled up perfectly and is sound asleep with the most peaceful look on his face. My girl is still awake and tells me -- "Daddy, I waited until he was asleep and then pulled up his covers."
My heart melted. I never asked her to do that. Never suggested she do that. Never even mentioned I'd come back to cover him so he wouldn't be cold. She just did it all on her own because she loves her little brother and wanted to take care of him. I cried when I told my wife. How amazing is she? And, she does little things like this for her brother all the time. She loves him beyond anything I've ever seen. He is blessed to have her.
And I'm the luckiest Daddy in the world to have them both in my life.
See, my boy has an older sister. She's six. She's a typically-developing spit-fire. She can be quite a handful, but she's also the most loving, caring, amazing little human. Here's what just happened...but first the background. My kids share a room. Their beds are along opposite walls from each other. When we tuck the kids in, we always pull up the covers and give them kisses. My girl won't get to sleep unless she has at least a sheet on her (just like me...I need at least some covers). My boy can't pull his covers up because of the muscle weakness from spinal muscular atrophy. Thus, we always pull up the covers and tuck them in.
So, it's been a really great day so far. Took the kids to a museum, saw a great mummy exhibit that they thought was really cool, took the boy for a much-needed haircut, and played Sorry and Zingo as a family before bedtime. They were really tired by the time teeth were brushed, pajamas were on, and books were read. And when they're over-tired, they don't want to sleep. And when they don't want to sleep, they don't want covers on. So, the wife and I just told them goodnight and turned off the lights without covering them up. So be it -- my girl can pull her own covers up when she's good and ready, and I can go in after my boy has fallen asleep and cover him up.
Flash forward 15 minutes. I tiptoe into the kids' room and...my boy already has his covers puled up perfectly and is sound asleep with the most peaceful look on his face. My girl is still awake and tells me -- "Daddy, I waited until he was asleep and then pulled up his covers."
My heart melted. I never asked her to do that. Never suggested she do that. Never even mentioned I'd come back to cover him so he wouldn't be cold. She just did it all on her own because she loves her little brother and wanted to take care of him. I cried when I told my wife. How amazing is she? And, she does little things like this for her brother all the time. She loves him beyond anything I've ever seen. He is blessed to have her.
And I'm the luckiest Daddy in the world to have them both in my life.
Thursday, December 10, 2009
Just not fair
So, I'm on a cross-country flight and they show this interesting documentary that brought together Jack White (of the White Stripes and now The Racounteurs), The Edge (U2, of course), and Jimmy Page (Zepplin, natch) to talk about playing the guitar, their unique styles, influences, etc. It was pretty compelling and really gave me an increased appreciation for White. I have been a fan of White Stripes for quite some time, but now I understand his influences in southern, bare, rough blues and see how they led him to create this very spare, honest sound. Luckily, I had my iPod with me and could listen to all the White Stripes music I have in the isolation of a tin can hurtling through space and noise-canceling headphones.
Okay, so that was pretty cool. And, it made me think of my boy, who is a huge music fan. And, for a 3 (now 3-1/2) year old, he really has definite tastes and preferences. Blue Note era jazz -- wonderful; Pearl Jam, Green Day, Wolfmother, White Stripes -- great "rockin out" music as he calls it; 80's new wave -- usually likes it, calls it "Squeeze music"; The Beatles -- he has yet to develop a taste for them...oh, but he will...yes, he will. He has of late developed an unfortunate (in my view) appreciation for a current Miley Cyrus hit, but he is 3 after all, so that can be forgiven.
Anyway, all this led me to think about how he'll never be able to play the guitar. I don't know that he'd ever want to, but watching those three incredible, innovative musicians, and their love for music and drive to create something of their own, I can imagine my boy would have the drive to do the same. But, he'll never have the strength to really hold a guitar, much less mash down the strings. And that just sucks. I try my damndest to think -- "So what? He can appreciate music, he can maybe even play an electronic drum set for kicks" -- but sometimes the unfairness of it all overcomes the sunshine attitude. And, sitting on that cross-country flight, alone (in the real sense at least) and in the dark, I could not escape the reality that it is just not fair.
So, readers (if there are any), this life is not all wine and roses.
Okay, so that was pretty cool. And, it made me think of my boy, who is a huge music fan. And, for a 3 (now 3-1/2) year old, he really has definite tastes and preferences. Blue Note era jazz -- wonderful; Pearl Jam, Green Day, Wolfmother, White Stripes -- great "rockin out" music as he calls it; 80's new wave -- usually likes it, calls it "Squeeze music"; The Beatles -- he has yet to develop a taste for them...oh, but he will...yes, he will. He has of late developed an unfortunate (in my view) appreciation for a current Miley Cyrus hit, but he is 3 after all, so that can be forgiven.
Anyway, all this led me to think about how he'll never be able to play the guitar. I don't know that he'd ever want to, but watching those three incredible, innovative musicians, and their love for music and drive to create something of their own, I can imagine my boy would have the drive to do the same. But, he'll never have the strength to really hold a guitar, much less mash down the strings. And that just sucks. I try my damndest to think -- "So what? He can appreciate music, he can maybe even play an electronic drum set for kicks" -- but sometimes the unfairness of it all overcomes the sunshine attitude. And, sitting on that cross-country flight, alone (in the real sense at least) and in the dark, I could not escape the reality that it is just not fair.
So, readers (if there are any), this life is not all wine and roses.
Saturday, November 28, 2009
Thanksgiving thoughts
Okay, it has been far, far too long since I posted anything new. Sort of like joining a gym and going for the first couple weeks but then never getting around to it. I don't want this blog to become a virtual Bally's Fitness, though, so I will have to be more disciplined. Now, on with the show...
It's two days after Thanksgiving. This is the second Thanksgiving since my boy was diagnosed with SMA. The second Thanksgiving with him using a wheelchair to get around. This year, though, he has his powerchair--a wonderful machine that enables him to run around with his older sister, go where he wants to go, explore on his own, and even get in trouble sometimes. This year, I'm thankful for Permobil (the company that makes his powerchair). I'm also thankful that we're healthy. Big sis recently had a nasty, lingering cold, and both Mom and Dad have been under the weather this Fall/Winter, but my boy has been sickness-free (knock virtual wood). We're all seasonal and H1N1-vaccinated, and citrus plays a prominent role in many meals.
More about Thanksgiving. Well, it was Thanksgiving 2008 when I had a real epiphany. My boy was diagnosed with SMA in February 2008 and by November, I was back to work, our family had settled into a routine of therapy appointments, specialist visits, and the sort. Life felt pretty normal again--the new normal at least. But, there was still this lingering sadness within me. I was still mourning my vision of what might have been, the father-son activities I always had in my head but now I thought were impossible because of my boy's muscle weakness, inability to walk, etc. I had overcome the profound shock, grief, anger, resentment and whatever other typical stages of grief or loss may be, but I was not yet to acceptance. I still thought of my boy as someone who had been unfairly inflicted with a life-threatening, debilitating disease. I saw the disease as something that had happened to him and wished so much that it hadn't.
Then, we were sitting around the Thanksgiving table with family and dear friends. Everyone was going around and saying what they were thankful for. I knew I had plenty of blessings to recognize--a roof over our head, plenty of food, a loving family. Despite the pit of sadness that dwelled deep down, things were okay. But, as we went around the table and everyone said their piece, it came to my boy. What was he thankful for? "Hot coffee." It was one of the funniest things I'd ever heard and the whole table erupted with one of those laughs that had to do not just with the joke at hand, but with all the underlying emotion of the day/the moment/the year that had been. My boy -- not yet 2-1/2 years old -- was laughing hysterically. He knew he was making a joke-and a good one at that. At that moment, one friend at the table (a great dad in his own right) said he was thankful that my boy was always the happiest person in the room. And it's true. His disposition is just joyous. He's funny, he loves playing with toys, he's inquisitive, he thrives.
And then it happened--the sadness lifted. I stopped seeing my boy as someone inflicted with this terrible disease. I no longer thought "if only he didn't have SMA, he'd be able to...". I realized that he is who he is and SMA is part of that. If he didn't have SMA, he'd be a completely different person. That's a biological truth, but it's also a metaphysical one. He's not my boy with a disease, he's my boy, disease and all. It's part of who he is. And, it's now a part of who I am, who my wife is, who my able-bodied daughter is. It's not an affliction, it's a part of humanity's biological diversity. Yes, it still sucks. I'd still love for a cure to be developed. I still fear for sickness, pneumonia, further physical deterioration, scoliosis, and a host of other things. But, I don't think "what if" and I stopped thinking that "we can't do X, Y, or Z." Instead, the calculus is "how can we do X, Y, and Z." And--guess what--we can do A, B, and C, that we would never have done otherwise and that we never would have even thought about. Full disclosure--I'm not always in this good place. There are still dark moments when I can't really catch my breath, but they are few and far between--and my outlook, my paradigm has shifted.
So, what about Thanksgiving 2009? I have even more to be thankful for. My family is tight, strong, loving, happy, and healthy. I went to see the movie Precious last night. It was another reminder that so many people live with such profound challenges, survive through adversity, and really did draw the short straw in life. Thank god, that's not the case with my boy. My boy is someone living with a disease called SMA. He's someone who uses a wheelchair (he's not "in" a chair, he uses it...it is not what defines him). He's also valued, hugged, read to, sung to, and surrounded with love. I wish all kids were so lucky.
Happy Thanksgiving.
Tuesday, September 22, 2009
Riding the bus
Wow, schoolbusses haven't changed in 30 years. Rode the bus for the first time yesterday in about that many years because my boy was riding it home from school for the very first time. The only thing different from the bus I rode was that there are now seatbelts on all the seats, and since this was the "short bus," there were tie-downs for wheelchairs. It was a pretty fun ride actually. Great view of the city as we rode through it, driver is very nice, and my boy got a kick out of it (although he won't admit that to his mom).
Now, more about that short bus thing. I never thought of that term before, but now it sounds like a racial slur. Maybe it's on my mind because that new show Glee had a "short bus" joke last week--along with another "special ed kids" joke. I don't think the writers of Glee, or folks generally who make such jokes are malicious or intentionally hurtful. But, those "jokes" are ignorant and insensitive. I guess I was ignorant before joining the disability community through my son. I don't know that I ever made short bus jokes, but I know I lacked the sensitivity and understanding that my boy--and everyone--deserves.
Well, ultimately, the short bus is pretty damn cool and a much more sane place than the "long bus" that I rode as a kid. If everyone just rode it just once, they'd realize that there's nothing funny about those jokes.
Monday, September 21, 2009
My superhero
I was never heavily into comic books when I was a kid. I mean, I enjoyed reading Thor and Spider Man and, most of all, The Avengers and all, but I was never a collector or anything. I did, however, love my Mego world's greatest heroes action figures, so I guess I did really like superheroes generally. But now, I'm obsessed. I love superheroes. Maybe it's because I gravitated towards things that gave me joy and comfort as a kid as soon as my boy was diagnosed with a life-threatening disease. Maybe it's because the world of imagination and fantasy is one that is just as equally available to my boy as it is to any other child--even if running and jumping is no longer in the cards, at least he and I can read about Iron Man's origin and both think it's pretty darn cool.
And then there's the X-Men. One of them shares a name with my boy and then there's the superhero in a wheelchair--Professor Xavier, or Professor X. What a cool character, what a great role model, what a wonderful thing to have a SUPERHERO in a wheelchair! The first two things I bought for myself as a direct result of learning my family is on this journey were (1) a photo of FDR in a wheelchair, and (2) a fucking awesome Professor X statue. Both for my office, both as constant reminders that my boy, too, can see himself as President and as a superhero.
So today, he's finally old enough to appreciate his very own Professor X. So, I found a cool action figure on amazon -- from the X-Men movie. Patrick Stewart as Professor X in a wheelchair. I can't wait until it gets here. And my boy's face lit up when I told him about the superhero in a wheelchair and about the toy coming that he can play with.
He may play with this toy and see Professor X as a great superhero, but my boy is my superhero. And no father has ever been as lucky.
Friday, September 18, 2009
Welcome
Where to start? Not at the beginning -- not yet. There's time for that. I'll start now by saying that this is a blog about perfection and flaws, about all that is right in the world and things that are wrong. But, mostly it's about my effort to be as good a dad as my son is a perfect boy.
Being a good dad--a really good dad--is not necessarily easy. We men aren't usually brought up to be good dads. Yes, maybe we learn we must love and support our family, but that's just the minimum that should be expected--rather, demanded. But fatherhood is riddled with challenges and struggles. We're all going to mess it up now and then. And, more than anything, we often just won't know what to do a lot of the time.
So, that's on my mind all the time. But the main point about this blog is to share my thoughts about navigating the world with my son who uses a wheelchair. He has a neuromuscular condition called spinal muscular atrophy and that causes muscle weakness and that means he can't walk. More on all that in another post.
But, what I'm trying to figure out is how to deal with an imperfect world on my boy's behalf. You see, he's only 3 years old. So, I still need to protect him, provide for him, and teach him how to navigate in an able-bodied world and teach him to have confidence, certainty, and inner strength. I need to make sure he knows he is perfect, even if his body fails him. I need to make sure he knows that when people stare or make ignorant comments, they're the ones that have something wrong with them, not him. He is my perfect boy in an imperfect world.
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